Guestbook

Thank you for visiting our pages. We would love it if you would Add to our guestbook! Go to our page.

My daughter had a hemispherectomy when she was almost 14. We are trying to find someone who has acquired their drivers license after a hemispherectomy. She is now 16.
Caves <ReginaCave@aol.com>
Tulsa, USA -

i just found out yesterday that my best friend has epilepsy. i was shocked and i was crying really hard. i was afraid that one day we would be hanging out and she'd have one and i wouldn't know what to do. but after reading some of the things in here i feel a lot better about it and now i think that i could be able to handle it if it came about. thanks
beth mebus <bethina@hotmail.com>
wrightstown, nj USA -

I had a shunt just before Christmas for a Cyst, I am looking for more information about what has happened
David Myers <David@Huntly.freeserve.co.UK>
Aberdeenshire , SCOTLANDUSA -

I would just like to say all of you are very sweet. Although I have no problems like you people, I understand every word that you say. A couple of your poems were really helpful to me because I am really starting to miss my grandfather and they just help me with the little things in life like boyfriends and friends and school. Keep the hope faith and stregnth. Love Always Lisa
Lisa
USA -

I want to add: I get depressed due to my complications. I would love to talk with anyone. I need as much support and encouragment that I can get. Jim is wonderful but he is getting irritated with my complcations.
Linda Dalhaus <LD0425@aol.com>
New Albany, IN USA -

I am a TBI/epilepsy. I am married to Jim who has had 3 brain tumors removed. He is classifies as a ABI. My injury was caused by domestic violence. Jim is my new husband who is much different then my ex abuser. I can not work which I was a very active nurse up to the moment of my injury. I live with 2 service dogs. Rudy, german shephered, is my seizure alert dog. Rex, Cardigan Welsh Corgi, is more of a response dog but he aids both Jim and I.
Linda Dalhaus <LD0425@aol.com>
New Albany, IN USA -

I AM A RECENT SUFFERER OF EPILEPSY. IT HAS BEEN A VERY FRIGHTENING EXPERIENCE, ESPECIALLY SINCE I LIVE ALONE AND HAVE A 10 MONTH OLD DAUGHTER.
keisha barrett <keishabarrett@hotmail.com>
rahway, nj USA -

I am 19 yrs old and have had complex-partial seizures all my life. Now I have also been diagnosed with pseudo-seizures that require weekly therapy. What makes this so difficult is I am also a slow learner and my brain damage makes it difficult to express myself. Due to all of this I can not get a job so while everyone else has a life I sit at home waiting for acceptance into a group home. At least that way I might be able to hold a job with supervision. I have no friends because they treat me as if i'm so stupid and I wonder what my life will be like in the future. I am lonely and get so tired of the way people continue to avoid me. I like this site, I don't feel so alone. I live in a rural area with my parents and would enjoy hearing from anyone around my age. Again, thanks alot Debbie. Kristen -claudeb@dmv.com
Kristen Webb <claudeb@dmv.com>
Millington, MD USA -

I am the parent of a 14yr old boy with a Traumatic Brain Injury/Epilepsy. Looking for help as to how to battle insurance companies, school officials, doctors and others who keep trying to force him into the mental health system because of depression. He has Left Temporal Epilepsy as a result of his injury and has required hospitalization for it. Can't seem to get the message across that it's rehab he needs and not some Psych service.
Jaye Mills <crazyhawk5@hotmail.com>
Moultonboro, NH USA -

Hi, Tony Great website. Met old friends going through the links. How about some jokes along with the poems and stories. :-)
LILY <LILY@LIGHTLINK.COM>
NY USA -

I have Juvenile Myclonic Epilepsy of Yanz. I recently had a grand mal and my doctor does'nt want me to work midnights anymore. Now my employer does'nt have a job for me. I've asked for an accomodation (to be placed on days), but they have refused. I know this isn't right, but a lawyer has told me I dont have a case! If anyone out there had to go through this please drop me a line. thanks!
Steve <DSBCJ@aol.com>
orlando, USA -

I love your poem.My son Jamie was a near drowning at 14 months he is now 12. he has brain damage real bad. He cant do nothing but cry and laugh which I dont know what he has to lagh for but he does he a fighter He has come a long wayThey think he might be having siezures now. no medicine yet otherwis other than his injury he heathly he gos to a special scholl but any way I love your poem. Robin
Robin dalton <windmillranch@alltel.net>
Branford, Fla USA -

hey!
Tony <bubbat@wcoil.com>
Convoy, oh USA -

hey
Tony <bubbat@wcoil.com>
Convoy, oh USA -

its me a again if i was to tell you im not very good with the computer then you will understand why it took 3 messages to get this right click on my name and maybe if i did it right this time to will get to my guest page tony
tony tumbleson <bubbat@wcoil.com>
convoy, oh USA -

this is tony for got to put my url for web page i would like for you all to write and sign my guest book tony http://wwwgeocities.com/HotSprings/Sauna/6865
tony tumbleson <bubbat@wcoil.com>
convoy, oh USA -

My couson made me a web page plesase vivist and sign my guest book iahave had t b i sence 1987 am doing better would like to hear from everybody that would like to write tony
tony tumbleson <bubbat@wcoil.com>
convoy, oh USA -

My daughter KayLee was in a terrible accedent she fell out a 2 story building at the age of three,the doctors were amazed with the out come of the injury ,but told me further down the road i might just riu in some problems .And we did kaylee now is going threw somw major changes,she is 12 know and dosn't know how to act 12 ,she's having trouble in school and always has stuggled,her iq has drop to a 55,and is in big trouble .It seems as she gets older she fails ,but tries so hard ,with the faith of god and the brain trama team i think we can fine something to help her along the way sincerly sonja@gibralter .net thank you for this i needed it
Sonja Burchard <sonjab62 @gibralter.net>
beaulaville, nc USA -

I am submitting my e-amail address on behalf of my son Kent.He has a TBI and mostly complex seizures and rare grand mal seizures. His MVA accident was in 1984. He is left with a residual short term memory loss and is slower to process. He will be on the computer soon.. I am excited to see this web site. This is wonderful. You are welcome to e-mail him thru my site until he has his own. All of you parents out there with kids with closed head injuries who are needing support can ask me too as I have been thru all the hoops. :) Michele Peterson- Washington state
Michele Peterson <WabbitRN@aol.com>
Silverdale , WA USA -

I am very proud of my mom who has created this for my brother (with tbi and siezures) and three other men. Announcing West County Farm Opening April 1, 1999 Founded by a mother for the long-term care of her brain injured son, West County Farm is now licensed for four men living with brain injury. Our goal: to provide a quality of life in a safe, supervised, structured and calm environment. West County Farm offers: 24 hour support; individually designed programs; family-style setting; on-site animal and garden projects; outstanding recreational and educational opportunities; neuropsychological support; and a long-term care prospective. West County Farm is located on 10 beautiful acres with views one hour north of San Francisco (just west of Santa Rosa) in a mild year-round climate. Residents must be medically stable, ambulatory, and between the ages of 18-59 California license #496800670. For more information visit: www. westcountyfarm.com or contact: Martin Aguirre, Program Coordinator at 707-874-9501. Thank You
Anne R. Peterson <arp@wco.com>
Sebastopol, CA USA -

Would love to talk to other spouses of head injury/epilepsy people. This is a tough spot to be in, especially when you love your spouse so much. Please write me...LPB40@aol.com
Lori <lpb40@aol.com>
colorado springs, co USA -

my name is tony i got viral encephalitias in 1987 i was a senior in college i am now 34 i have seizeers i cant control i have a loss of menorey loss of balances and thr worest loss and the one i hate the most is loss of frends. iIwill write to any one that writes waiting to hear from anyone bubbat@wcoil.com
Tony Tumbleson <bubbat@wcoil.com>
convoy, oh USA -

I was so surprised to finally find a page that pertains to epilepsy. December 15, 1995 I underwent 15 1/2 hours of brain surgery to have my left hippocampus removed. I have been COMPLETELY seizure-free ever since. I would be thrilled to speak with anyone who suffers from epilepsy or has had brain surgery to cure their seizures. Have written my autobiography and am very eager to get it published, so that I may help others with this sometimes crippling disorder. Have written many poems pertaining to epilepsy also. I will answer ALL inqueries.
LISA-MARIE KINSMAN <Seizuref @aol.com>
Sheshequin, PA USA -

Sorry Shanon I forgot to put today's date. 2-18-99....... Later People Chow David R. "Still Surviving" :)
David R. <ElToro518@aol.com>
Lynn,, MA USA -

Hello everyone I would like to invite, anyone who is interrested in going to a support group. It's here close to me. It's in Salem MASS. It's just getting started,so we need people (family,friends,people surviving) who want to learn more about what we are going through. This support meeting is going to be every first Teusday of the month at Salem Hospital. If interested please e-mail me? For more info. Thanks Later Take Care David R. "Still Surviving"
David R. <ElToro518@aol.com>
Lynn, MA USA -

I THINK IT STINKS. If you want a poem look else where!@!
Sydney Dawn McCord <NA to you!!>
Grant City, MO USA -

I really enjoyed this web page I was diagnosed with seizures when I was 4 when I had a grand mal that took doctors 2 hr. to get me under control. When I started second grade they flared up again with my mom noticing my very first one in the car. Iwas taken to the doctor and was told I was having petite mal seizures. They got worse to where my medicine wasn't doing anything. In the third grade we decided to do brain surgery I was only 8 I was monitored by video camera and was hooked to wires that ran to a brain monitor that was recording my electrical impulses. To find out I was having about 70 to 80 seizures a day and would kinda have amnesia after my seizure and during b\c I didn't know where I was ,who I was, Or anyone around me. My first surgery I had a right tempalobectomy ( they removed my right temporal lobe). Iretuned back to school and they started again. That summer after school was out I went back to the hosptital and had another surgery done this time they found what hey think was scar tissue and removed I had a 50\50 chance of being paralyzed, loosing some of my hearing, & sight. During my surgery they told my mom that it was around the core of my brain and if they were to hit it I would become a vegetable so they stopped. I'm now 16 and haven't had a seizure in 7 years.
Tiffany Faye Watson
El Paso, Ark USA -

I just had a car accedent the 9th of Dec. '98. I was in a comma for six days, and then I acted as if I was awake. I didn't wake for another couple of weeks, even though I was apparently talking to everybody. Right now I am able to do a lot of the things that I did before. I think that your page is really nice to people like me. Thank you.
Derrick <zwmd85e@prodigy.com>
Presque Isle , ME USA -

I really like your website it is very positive and uplifting. I myself was epileptic when i was younger and this is a great thing that you are doing.
Sacha Butterfield <butters@hotmail.com>
Hampton, VA USA -

my father is epileptic, he has been having grand mal seizures for almost tirty years now. All of my life. I am the oldest of his thre daughters and have had to take care of my sisters when he has a seizure, he is usually out for about 48 hours. I love my father very much, and I consider myself very lucky to have him in my life. Epilepsy is something that has been difficult for my family to deal with, but I wouldn't want my dad any different. He has raised three beautiful children on his own, and we're all doing very well for ourselves. Dealing with his epilepsy has taught me responsibility and respect for others with disabilities that I don't understand.
erin gillis <barrygillis@hotmail.com>
northampton, ma USA -

I am 19 years old female that has complex partical seizures since birth, they have got worst the last few years, I have been on so many different meds, and they have not helped! They want me to have brain surgery,or have the Vagus nerve Stimulation done, I would love to to talk to some one that is going threw what I am . I can't live a normal life, it is so hard having these seizures all the time.It is very depressing. tasha1019@aol,com
Natasha Gartrell <tasha1019@aol.com>
Dearborn, Mi USA -

I am the mother of a beautiful girl who was diagnosed with epilepsy when she was 15 years old. Very shortly she will be 18, and I am concerned for her well being, since after numerous regimens of medications and hormonal treatments, the incidents of break through seizures, cannot be eliminated. Do I take the necessary steps and petition for power of attorney, or do we just let it ride for the time being. I am quite concerned that she is not as mature as she would have people believe.
Anne Courchesne <AMMC967@aol.com>
Ware, MA USA -

I have had two headd injuries in the last two years, first from snowboarding, then playing hocky. I have had Cat Scans, EEG, ECG &everything is normal, but it really isn't!! I have seizures often, especially when under stress. My neurologist didn't believe me and she asked my partner if I was acting when I had a seizure. I felt like no one could help me and I wanted to die but with love from my partner and family I'm now alot happier. I would love to hear from others, especially those who have had a closed head injury and now seizures. Maybe you can help, since the health system here in New Zealand cannot. Take Care
Deborah Searancke <97162336@uni.massey.ac.nz>
Palmerston North, New Zealand -

I'm the mother of a 13 year old with epilepsy. It's great to hear other peoples stories and issues to remind me I am not alone.
LaDonna <Dalonna@AOL.com>
USA -

I was actually job-hunting on the web when I stumbled across this site. All of the comments and stories are wonderful and I commisserate (sp?) with all of you. I am a speech pathologist who chose this career because 10 years ago, when I was 18yrs., I had a TBI and ever since then I have wanted to work with rehab. following TBI. Haven't yet found my "dream" job treating our population; if you know of any facilities that specialize in treating TBI patients I'd love to know about them.
Charlotte Bell <logo@accesstoledo.com>
Maumee, OH USA -

Please e-mail me if you know of any support groups epilepsy in Huntington,Beach, Ca. Thanks
June <petunia55@aol.com>
USA -

2/4/99 I have come forth in order to express that I am in needs of support for I and my wife are looking into opening a Epilepsy & T.B.I. support group. I am wanting to be able to support the peoples of "disabilities" within the TBI and Epilepsy patients. The one thing many do not recieve due to the TBI and Epilepsy is compassion and care. Or to get to what they need. "Love". I will ask you to give insight and mere support, provided you feel it is a true necessity to ones life.
Patrick Porte <impat10038>
Costa Mesa, Ca USA -

would like to get suport group in my town can any one help me on how to go about this
sandy <bubbat@wcoil.com>
convoy, 0h USA -

Iwould like infromation on starting a support group .we have none in are town and i need to know how to go about it
sandy <bubbat@wcoil.com>
convoy, oh USA -

HARLEY ROCKS MY WORLD
Joseph Jackson <skoidat@usa.net>
las vegas , nv USA -

I have a three months old baby boy. At day two he stasrted to have seizures. The doctors told us the diagnosis. He has Ohthara Syndrom. The baby needs ÓAcktargelÓ (ACTH) and ÓPiridoxinaÓ. Please, if there is someone that can help us to find the medicine, or tell me where can I get it. My email is adeacha@correoweb.com, my phone number is (525) 560-2198 in Mexico. All replies will be appreciated. Thanks a lot.
Alejandra De Acha Medellin <adeacha@correoweb.com>
Mexico, DF Mexico -

i love the page but i need more suport someone to write to and share with great page i had a car accident in 1996 which caused a t.b.i now i have sizures i need and qould like to give you all a big hug
christopher j dudgeon <cdudgeon@aol.com>
cheaspeake, va USA -

Hello Everyone I'm back.I'm trying to get people to view and sign my guest book.Click on my name to get to my home page.Looking for friends,people to understand what I'm going through,I know I'm not alone. But it seems like I am, this injury is so invisible,it's scary.Today is 1-19-99. Hows that shannon.Bless everyone!!! take care.......
David R. <ElToro518@aol.com>
Lynn, MA USA -

Hello Everyone, I am trying to acquire e-mail pals who have epilepsy which is also known as a seizure disorder. My name is Joe, am 48 years old, live in Chicopee, MA which is located 90 miles west of Boston. A seizure has not occurred in over two years which I am glad to say. I take depakote and dilantin to control my seizures. I look forward to many replies and all will be answered. Sincerely, Joe Kowal
joseph e. kowal <oceanside_99@hotmail.com>
chicopee, ma USA -

Hello Everyone, I am trying to acquire e-mail pals who have epilepsy which is also known as a seizure disorder. My name is Joe, am 48 years old, live in Chicopee, MA which is located 90 miles west of Boston. A seizure has not occurred in over two years which I am glad to say. I take depakote and dilantin to control my seizures. I look forward to many replies and all will be answered. Sincerely, Joe Kowal
joseph e. kowal <oceanside_99@hotmail.com>
chicopee, ma USA -

I WAS STRUCK BY A CAR WHEN I WAS FIVE CAUSING BRAIN DAMAGE WAS IN A COMA FOR ABOUT 72 HOURS. I DEVELOPED SEIZURES WHEN I WAS ABOUT 16. BEFORE THAT HAD TERRIBLE HEADACHES FOR A FEW YEARS. I AM NOW 50. I WISH THIS HAD BEEN AROUND WHEN I WAS YOUNGER. FAMILY HAD A TOUGHER TIME WITH THIS THAN I DID. THEY WERE OLD FASHIONED AS I LIVED WITH GRANDPARENTS BUT THEY WERE GREAT. I USED TO HAVE BAD GRAND MAL SEIZURES. I BEEN ON DILANTIN SINCE I WAS 16. I ALSO WAS ON PHENOBARBITAL UNTIL A FEW YEARS AGO. I WAS LUCKY IN THE FACT THAT MY ACCIDENT HAPPENED WHEN I WAS SMALL AND MY BRAIN WAS STILL DEVELOPING. I DID GO TO PAROCHIAL SCHOOL FOR 11 YEARS. I SWITCHED TO GO TO PUBLIC SCHOOL MIDDLE OF JUNIOR YEAR AS I WAS HAVING PROBLEMS WITH SHAKING IN TYPING CLASS DUE TO STRESS. I HAAE DONE SO MUCH BETTER SINCE I STARTED WITH THE POLICE DEPT AS A CLERK TYPIST 20 YEARS AGO. I CAN LET OFF STEAM AND NO ONE PAYS ANY ATTENTION. I THINK THE THING THAT HELPED ME WAS MY STUBBORNESS. WHEN I AM TOLD I CAN NOT DO SOMETHING I WANT TO PROVE THEM WRONG. I HAVE MANAGED TO LEARN TYPING-NOT FAST- BUT ENOUGH TO GET BY-WORD PROCESSING OLD AND NEW PROGRAMS-DATABASE, AND OTHERS. I THINK MY BIGGEST ACCOMPLISHMENT HAS BEE LEARNING HOW TO USE THE WEBTV. NOTHING WAS EASY. WHEN I TOOK WORD PROCESSING I WOULD SOMETIMES CRY BECAUSE IT WAS SO TOUGH FOR ME. BUT I DID LEARN. EVEN MY TEACHER WAS PROUD. I DO NOT HAVE A LICENSE. I WISH I DID.I HATE BEING DEPENDENT ON SOMEONE. I AM NOW SELLING ON EBAY. NOT BAD FOR SOMEONE WITH BRAIN DAMAGE. HOPEFULLY SOMEDAY I WILL BE ABLE TO DRIVE. SORRY IF I AM RAMBLING BUT IT IS BECAUSE YOU UNDERSTAND. THANKS
KATHLEEN CONROY <KKMMCC@WEBTV.NET>
BOSTON, MA USA -

WOULD LIKE TO GET TO KNOW MORE PEOPLE THAT ARE EPELEPTIC. I MYSELF HA HAD EPILEPSY ALL MY LIFE (35 YEARS TO BE EXACT)AND I HAD HELPED HOLD UP A MONTHLY SUPPORT GROUP IN ORANGE COUNTY CA.
PATRICK PORTER <DAVID27878@AOL.COM>
CA USA -

On May 20th, 1989. I was a buckled passenger in my girlfriend's car, sitting in the back seat after giving up the "shotgun" seat to my friend. Everyone in the car was 100% sober, yet she misjudged a left turn that put me in a coma for two and a half days. Needless to say, upon my recovery, my relationship with her did not last very long. Due to a successful lawsuit, her insurance paid for my hospital fees. After finishing a long two months visiting a facility for mentally disabled individuals that's just a few blocks from my house, and that my friends and I used to laugh about, I spent my junior year of high school at a school for the "learning disabled". This was to ease my possible return to public school, which it did. Unfortunately, during this time, I was turning sixteen, and was unable to drive. Being forced to watch the people who I thought of as friends made this time even more difficult. When I was able to return to public school to finish my high school years, I discovered that "mental disability" is a hard thing for others to accept. I went on to Community College (Scottsdale Community College), and was able to tell my story and voice my thoughts at graduation, upon receiving my Associate Arts Degree there. I am currently still dealing with short-term memory disorder, I still have petit-mal seizures (I've had a few grand-mal seizures), and have never ever driven a car. I'm attending Arizona State University, majoring in visual arts. Due to my disability, I'm allowed to take things a bit slower than my fellow students, so it's going to be quite awhile before I receive my diploma. No matter how bad things may get, I must always keep in mind that I could still be in a coma, and that I should be very grateful that I am able to deal with my disability, while others have decided to just give up. Please, always keep this in mind: you could be dead, but you're not. And please, when you think of this, remember the huge number of things that you should be thankful for. God bless you.
Paul Johnson <PaulVal@aol.com>
Phoenix, AZ USA -

JANUARY 16,1999 HELLO CORY HOW ARE YOU TODAY? I WAS GLAD TO SEE SOME ONE AGREED WITH ME. IT IS IMPORTANT WHEN YOU CAN'T REMEMBER FOR SURE ABOUT THE DATE .WHAT HAPPENED WITH YOU? I WAS IN AN AUTO ACCIDENT IN JULY OF 1995.I AM BETTER NOW BUT I NEED TO LEARN TO WALK .I'M TRYING THAT NOW.AND TO USE MY LEFT ARM AND HAND AGAIN. I AM NOW 20 AND WILL BE 21 IN JUNE THIS YEAR.
SHANNON <shanipoo@imcnet.net>
THERESA, NY USA -

I love your poems and quotes! Would there be any possibility for you to e-mail me a quote every now and then? If not, do you know of and website that will do this?
Karissa Wellman <kalika_10@hotmail.com>
Black Buttte Ranch, OR USA -

My husband developed epilepsy during the first year of our marriage 16 years ago. Doctors recently told us it was caused by a blow to the head during a soccer game. Although it is my husband's illness, it has taken an entire extended family to overcome it. Patients who are diagnosed with epilepsy should never, Never, NEVER give up. Find someone to talk to, read everything you can about current treatments, and if a physician does not give you the repect or answers you deserve find another physician. It may take years to develop a medical support group that works for you, but once the team is inplace it is much easier to deal with and overcome the illness. Emotionally it may sound trite, but take each day as it comes, don't look back and don't look to far ahead. Delight in each new day, savor it and be thankful. Because as corny as it sounds, that is really all any of us have. This is a wonderful website!
Jenny <JWDavis@topher.net>
TX USA -

I agree with SHANNON :) WIth my memeory, i can't remember if i read these till reading it unless it's dated! ANd SHANNON is right...this site IS the greatest!
Cory
Marietta, GA USA -

PLEASE PUT THE DATE IN YOUR COMMENTS:) IT HELPS TO KNOW WHEN YOU HAVE WRITTEN YOUR MESSAGE. I THINK THIS SITE IS THE GREATEST!!!
SHANNON <shanipoo@imcnet.net>
THERESA, NY USA -

When I was three years old I suffered from a TBI, I was hit in the head by a buffer machine. As a result from that accident I suffer from petit mal seizures and migrane headaches (sometimes they can be worse then the seizures). I get very disorientated easily and can't stand t be in loud noisy crowds. I have struggled my whole life in school, in sports, at home. It's hard having petit mal seizures, because people don't really understand. They think that you're just day dreaming. Before I had my accident my mother told me that I knew how to read and tie my shoes. I had to learn how to do all those things over again, plus I had to learn how to walk and talk. I couldn't go up and down stairs. I have been on tegretol sense I was fourteen years old, and before that dilantin and penabarbatol. I do have my license, but I try not to drive a lot. It definitely does put limitations on your life. Iam 26 now and have a wonderful husband, and three beautiful children. Everyday can be a struggle, but you just have to keep the faith. I am so glad to have found this web site. It has some great information on it, and it's great to know that I'm not alone out there. Sometimes people just don't understand.
Julie Pinto <Jewels1053@aol.com>
Middletown, RI USA -

I know personally that Epilepsy is a very misunderstood disease, I had Epilepsy for a decade and didnt even know what was wrong with me from a head injury in 1979. I took over 35,000 Complex Partial Seizures that were undiagnosed all due to not 1 doctor ever asking me if I ever had a head injury. The problem was that the Hallucinations and dry hieving I was having began several months after this head Injury, that is why I did not connect the two. I feel that the only people who really know about head injury's and Epilepsy, are the people who have them. There is no special book with special words that will ever explain the horrific suffering I went thru for over a decade. I have two sayins that I have devolped thru all of this termoil. I tell the know it all's : Untill You've Walked The Walk, Don't Talk The Talk" also : A Head Injury Comes With A Life Sentence. I speak from experceince.
Blaine Stanziana <Bstanziana@aol.com>
Pgh, Pa USA -

I AM A MOTHER OF A 19 MONTH OLD LITTLE GIRL (JENA ROSE) SHE WAS DIAGNOSED WITH SPINAL MENINGTIS AT 9 MONTHS IN APRIL 98. SHE SPENT 8 WEEKS AT JOHNS HOPKINS HOSPITAL WERE WE WERE UNSURE IF SHE WOULD LIVE OR DIE. WITH MANY PRAYERS AND MIRACLES WE BROUGHT JENA ROSE HOME. JENA IS COMPLETELY DEAF, AND IS PARALIZED ON HER RIGHT SIDE DUE TO THE MENINGITIS. IT HAS BEEN A VERY HARD YEAR FOR JENA AND OUR FAMILY. JENA SUFFERED ALSO FROM STROKES AND SEIZURES WHILE IN THE HOSPITAL. JENA WAS PUT ON PHENOARBITAL 30MG 2X A DAY. SHE WAS FREE FROM SEIZURES UNTIL JAN. 5, 1999. NOW OUR HELL HAS STARTED AGAIN. WITH ALL JENA'S OTHER MEDICAL ISSUES, THE DOCTORS ARE HAVING A HARD TIME UNDERSTANDING HER SEIZURES. ANY INFO. OR SUPPORT WOULD BE VERY MUCH APPRECIATED. PLEASE NOTE: THERE IS A GREAT BOOK , TAKE THE TIME TO READ IT. " SEIZURES AND EPILEPSY IN CHILDHOOD; A GUIDE FOR PARENTS. BY: JOHN M. FREEMAN. BE STRONG, DON'T GIVE UP WE CAN ALL FIGHT THIS TOGETHER. GOD BLESS YOU ALL
Lori Rowland <marpatdon4@aol.com>
stewartstown, pa USA -

WOW! What a GEEAT site! I am 20 years old and a survivor of a mild TBI. I was in a car accident about 5 years ago and didn't find out what was "wrong" with me until about a year ago. It has been a very trying struggle in living with such intense headaches, memory loss, MAJOR mood swings, etc. Sometimes, it seems as if I have so much to say, but I just can't make the words come out of my mouth. I feel trapped inside my brain- who will let me out? Well, as time goes by, I am learning to speak my thoughts more clearly! Also, I am a junior in college! By the grace of my Lord and Savior, Jesus Christ, I am doing exceptionally well with my grades! It is so difficult sometimes, and I frequently feel as if I am "dangling from a splitting thread." I mean, I can only remember what my teachers say for about five minutes. Sometimes, I have to reread the same sentance, analyzing the definition of each wor repeatedly, over and over before I can understand! AHHHHHH!!!!!! If you were to meet me on the street or in church, you would have no idea there is anything wrong with me! (I see that many of you may be in the same shoes as me!) I'm glad for that because sometimes I get sick of people "babying" me. I want to do things myself and I can't if people won't let me! I can't relearn "broken skills" if people do things for me constantly! I dont't want to be rude or prideful about people's help- I mean many people have no clue of my struggles and may just offer me advice about how to go to the grocery store to avoid traffic! It is often things like this that I need to think through! Anyway, enough rambling! I am so encouraged to stumble across this site tonight! My heart goes out to each of you who struggle with brain problems! I know how hard it is, and I only have a "mild" injury! I so desperately want to talk about my struggles with people who understand! Is there anyone who can contact me? Or, does anybody know of any TBI chat rooms? An internet support group would be so cool! Please e-mail me if you feel like chatting! THANKS! ~Ang~ Catching-The-Wild-Goose-@juno.com
Angela S. <Catching-The-Wild-Goose@juno.com>
USA -

One year ago I was sitting at my computer at school and fell over and started having convulsions. I had just been diagnosed with hypoglycemia, so it was just asumed that the reason it happened was because my sugar had dropped to low. Two and a half months ago I had a baby. Everything seemed fine I was doing good and I had a healthy baby girl. Later that night, I went into a series of siezures, one right after the other. Two weeks later I was to go in and have an EEG done to see what was wrong. It determined I had epilepsy. I was put on 250mg. of Depakote. Since the night in the hospital I have not had any problems except some petit mal seizures. It turned out that I had been having them since I was very young and didn't know. I am glad we know now why I couldn't ever learn very well in school. But I'm still scared. I am only 19 years old and I am afraid I will have to be on medications my whole life. I also have this new baby I am scared to hold because I am afraid I will have a seizure while she is in my arms. If anyone can give me some reassurance I would be grateful. My family has been great, but it's is hard for anyone who does not have epilepsy to understand what it is like. My heart goes out to others with my problem.
Cara Kearbey <bbailey@clnet.net>
Doniphan , Mo USA -

It's great that you have this website!!
Joseph Bernau
Lusby, MD USA -

its nice to find a spot just for me. my accident happened 30 august 1997, that day changed my life forever. its hard knowing i'm different than before the accident and learning to like that person is real hard,i just hope i can figgure out what to say to my daughters questions about me before the accident and how my life was easier and maybe better and hoping she doesnt take offence since i was pregnant with her. they thought i'd die and many times i wish i had, but somedays i look at my daughter and realize maybe she's my second chance at living from god. i just hope i can get over all my "new problems" misspellings, "getting things" crowds, siezures and everything else and realize i'm alive, i guess that should matter. it's just so hard being alone here in my messed up brain.
heather winegar <j.winegar@worldnet.att.net>
mpls, mn USA -

Me and my nieces, have Siezures, but are under control. I would like alot of Information on Epilepsy if I could. Send Info. to the above E- mail address! thanks!!
D.A. <Heavenspassion@hotmail.com>
Mn USA -

Beautiful and up lifting poem.
Dreamey <alsw@netscape.net>
OH USA -

I viewed your gustbook and think that you have a really good thing going. I was diagnosed with epilepsy when I was 5 years old and was put on many barbituates. I was taken to see neurologists in Morgantown,WV, Pittsburg,PA, Cleveland
lou <lu@iolinc.net>
WV USA -

TODAY IS DECEMBER 30,1998. AND I HAVE BEEN READING THE POEMS AND STORIES ABOUT ALL OF YOU. I AM A SURVIVER AND CAN RELATE TO WHAT EVERYONE IS GOING THROUGH. MY GRANDMOTHER IS TYPING THIS FOR ME AS MY LEFT ARM DOES NOT DO THE THINGS I NEED TO DO.I AM A TBI SURVIVER AND I ALSO HAVE BEAT ALL THE ODDS AND I AM ALIVE!!! I AM TRYING TO LEARN TO WALK AGAIN. I WAS IN AN AUTO ACCIDENT AND IN A COMMA FOR SEVERAL MONTHS.I HAD TO LEARN TO SPEAK,SWALLOW,TALK AND NOW TO WALK. I KNOW YOUR PAIN. PLEASE E-MAIL ME IF YOU WOULD LIKE TO .
ANN FOR SHANNON <shanipoo@imcnet.net>
THERESA, NEW YORK USA -

MY FIRST LOOK. ME AND MY GRANDMOTHER/CAREGIVER ARE ALWAYS SEARCHING FOR OTHER SURVIVERS. I AM LEARNING TO WALK . I AM A TBI SURVIVER. THEY TOLD MY GRAMMA THAT I WOULD'T LIVE. I FOOLED THEM . MY ACCIDENT HAPPENED IN JULY 1995. I'M STILL MOVING FORWARD.
SHANNON SLATE <shanipoo@imcnet.net>
THERESA, NY USA -

Blaine, You must know me, I am you.
nanook <nanookg@yahoo.com>
USA -

Adrian provided my with your site address. It was a pleasure looking in. My son (26) has been PwE since 1981. Thank you!
Bari <Bari970727@aol.com>
USA -

My 14 year old son had a closed head injury along with other major injuries in a truck accident in September of 1998. He spent 2 weeks in ICU and the rest of the time in rehab. A total of 2 1/2 months. I am still learning about this. Some of the stories are real scary, especially the ones of victims who have seizures later on in life. My son is doing very well, but after reading some of these stories, I wonder if there are more surprises in his future.
Lorrie <lorrie@sault.com>
USA -

Thanks for your sharing your story. I now feel as though somebody understands what I go through. I have also been able to safely realize I am not the same person I once was. I am finally learning to except who I now am. Thank you.
Sara S. Cherven <depung@cbcast.com>
Morris , IL USA -

I am the significant other of a 41 yo wonderful man who suffered a tbi due to a tubing/boating accident 5 months ago. I feel like I'm in a battle with everyone..the system, family, and am moving in the phase of angry recovery....looking for lots of info and support.....thanks...
melinda <queenmom 81@aol.com>
dothan, al USA -

I would like to get some more info. on the dogs that are used to help people with epilepsy, i am really interested thanks
Irene Hendricks <Bi Gemin69>
Antioch, Ca USA -

REMEMBER!, NEVER LOSE YOUR SENSE OF HUMOR! Today was another landmark day doctors told me that they don't know what they can do for tailbone pain. Neurosurgeon stated that pain was not caused by brainstem surgery. DCH trying very hard to cover-up fall out of bed DOCTORS ARE SENDING US ROUND IN CIRCLES FOR THE SECOND TIME. REFUSE TO KEEP ME ON ANY PAIB MEDS, BECOMING DEPENDENT UPON PAIN MEDS WHILE IMPORTANT ARE SECONDARY TO BEING ABLE TO GET SOME RELIEF. I HAVE BEEN TOLD THAT I HAVE HAD TO MANY BABIES,( WISH I COULD HAVE BEEN THERE AS I AM A 41 YEAR OLD MALE! MUST HAVE BEEN SIMPATHY PAINS FROM WATCHING MY WIFE OF 20 YEARS GIVE BIRTH TO OUR 3 ALMOST FULLGROWN CHILDREN IT WAS JUST A DELAYED REACTION, THEN IT WAS "ALL IN MY HEAD" THIS IS ALL A RESULT OF MY BRAIN STEM SURGERY IN FEB.98, THE FIRST HOSP CDH DIAGNOSED ANXIETY ATTAK AND NERVOUS BREAKDOWN THEY RAN CBC6; CHEM7; AND ETOH(ALCOHOL)AND DRUG SCREEN ALL OF WHICH CAME BACK NEG. IN THE MEAN TIME THEY STRAPPED ME TO A GURNEY, PUSHED ME INTO A ROOM SHUT-OFF THE LIGHT, LOCKED THE DOOR AND LEFT ME THERE UNTIL I HAD AN ACCIDENT!NOW I LIVE IN AND WITH SEVERE AND CRONIC PAIN IN MY TAILBONE! THIS IS HOW TO CARE FOR AN ANEURISM!? SENT ME HOME THAT DAY, WITH THE ADVICE I SEE A PSYCHIATRIST TO HANDLE MY DEPRESSION AND NERVOUS BREAKDOWN. SHOULD HAVE DIED THAT EVENING! NEXT DAY SYMPTOMS WERE STILL PRESENT, WENT TO DIFFERENT HOSP. WHERE PROPER DIAGNOSIS WAS OBTAINED! WHILE IN THERE CARE I SUFFERED A FALL FROM BED AND DAMAGED TAILBONE AT FIRST RN TOLD MY WIFE I HAD TAKEN A TUMBLE, NOW THEY DENY ALL KNOWLEDGE AND HAVE DOCTORED HUNDREDS OF PAGES OF NURSES NOTES TO REMOVE ANY REFERRENCE TO THE ROOM, EXCEPT FROM BILLING! (FIRST RULE OF DETECTIVES IS TO FOLLOW THE MONEY AND THERE IT WAS. NOW I EXIST ON PAIN KILLERS THAT THEY WANT TO CUT ME OFF OF THEM SO I DON'T BECOME DEPENDANT UPON THEM. THE PAIN IS INMATERIAL TO THEM! THE RECORDS AND THE HISTORY AND THE BILLING ARE NOT IN SYNC. SCREEMS OF COVER-UP TO ME!!!WHILE I'M MORE THAN GREATFUL FOR THE LIFESAVING MIRACLE PERFORMED BY THE SURGICAL TEAM. I HAVE LOST ALOT OF RESPCT, TRUST AND FAITH IN THE HEALTHCARE SYSTEM. I PRAY DAILY FOR THE STREGNTH TO MAKE ANOTHER DAY! DOES ANYONE ELSE OUT THERE HAVE ANY SIMILAR EXPERIENCES!? I'LL BE KEEPING IN TOUCH WITH THIS SITE IN AN EFFORT TO EXPOSE SOME OF THE OUTRAGEOUS ACTIONS OF THIS HEALTHCARE SYSTEM... WE ALL HOPE EVERYONE WHO READS THIS HAS A WONERFUL HOLIDAY SEASON AND RECIEVE THE STRENGTH TO CARRY ON AND ACCELL!
Dave Adams <daveadams1@juno.com>
west chicago, il USA -

I am lucky to find this page I really do enjoy reading poems just as much as I like to write them
Geoffrey B. Tolbert <boots@lycosmail.com>
Citrus Heights, ca USA -

I am the mother of a 8.4 chronologically aged little boy. He also suffered a grade IV IVH that resulted in a diagnosis of cerebral palsy, TBI and epilepsy. Our's has been an uphill battle; but I thank God for giving me hinds feet to climb my high mountains. As a result of the TBI, Fredrick also suffers (as well my family) from him having an impulsive behavior disorder. He is currently on topomax and depakote. However, he takes minimal doses compared to just three years ago he was on dilantin, neurontin and depakote... max dosing on them all. I attribute his recent progress to a wonderful nutritional supplement called RELIV. And I thank God for providing it to us. Fredrick's whole life has been complex... at birth he only weighed 720 grams and lost down to 500. He was extremely premature; 24 week gestation. It is a miracle that he is living as well thriving. His greatest strength is his sense of humor. It amazes me how this kid can laugh and make others around him laugh as well. That's his gift to the world I suppose... laughter. We all need more of that don't we. Well, as I visit this web site from time to time, I will pray for those names I see listed. God has helped my family tremendously. My son's father walked... couldn't deal with our life... We've been homeless twice; we've had to struggle like you wouldn't believe. But guess what, WE ARE MAKING IT. Soon, my oldest son will leave for college and it will be just Fredrick, myself and God... what a partnership. Be encouraged whoever you are... There is a higher purpose.
Jan Guider <jtfgs@aol.com>
Naperville, IL USA -

Mother had brain tumor removed a few years ago and is on disability and anti-seizure medication.
Lisa Nuxol <lisnuxol@gsaix2.cc.gasou.edu>
Statesboro, GA USA -

Mother had brain tumor removed a few years ago and is on disability and anti-seizure medication forever.
Lisa Nuxol <lisnuxol@gsaix2.cc.gasou.edu>
Statesboro, GA USA -

have had complex avm ressecsion, aneurism, cranoitomy, 20 brainclips, 3 shunts central dupage hosp. diagnosed me with depression offered tylenol and sent me home feel out of bed at hosp. and damaged tailbone, hosp. is trying to cover-up. feel like the lost dog blind in one eye, missing leg,ear and tail answers to the name LUCKY!!!!
dave adams <daveadams1@juno.com>
west chicago, il USA -

My husband got epilesy through a brain tumor. My husband was diagonised that he had this brain tumor, because of a seizure. Being told that once the tumor was gone, then the seizures would be gone. This is not true. I tell you this because my husband has been free from this tumor and its swelling for over 4 months and my husband had a grand mal seizure 2 weeks ago, while on the medication, and had a small one this morning. My husband and I can live with him having this if it just this, but they haven't told him that he does. I would just like them (doctors) to tell us that he has epilesy and correct his medication and not just continue to tell him that everthing is gone and everthing will be back to normal. If you can provide me with any information about why husband might be having these small seizures, I would really, really welcome it. If this information helps, my husband has these small seizures when he only takes 3 pills instead of 4, due to the doctor's prescription, and it happens when he asleep. Please help. Thank you!!
Joell Greco <Avaly@aol.com>
Savannah, GA USA -

I am a 26 year old female and was diagnosed with a seizure disorder 6 months ago. I was put on dilantin and have not had a grand-mal siezer since, but still have partial siezures. The dilantin is really a horrible drug. It makes me feel as if I am swimming in glue! My short-term memory is also severly impared. Im tired of feeling like a zombie and am searching for non-medication alternatives. I do not need surgery because there is nothing physically wrong with my brain. My MRI and CAT scan were normal and I also had a normal EEG. My doctor is of no help and is insistant that I take this wretched medication for the rest of my life! Please if anybody knows of any alternative treatment for siezures, especially natural alternatives, please e-mail me at brande.doten.gte.net. I would love to have my life and mind back! This is a wonderful sight and am greatful I found it. brande
brande <brande.doten.gte.net>
tucson, az USA -

I FELT YOUR WORDS. A ABUSE SURVIVER.
shelley n. bruce
Canada -

I came across this web page while doing research on epilepsy for a college course. Ever since my cousin died after having a seizure while swimming, I've always wanted to learn more about epilepsy. What I learned from this site had nothing to do with the technical information for my paper, but with the emotional aspects. I can't thank everyone who has submitted poems and stories enough, as I feel I've been given another chance to meet my cousin. Despite the hour I "wasted" in terms of research time reading through them, I've gained so much more that the time doesn't matter. What a beautiful site!
Sarah <owa_tajoe_kiam@yahoo.com>
USA -

Debbie, it was a great pleasure to meet you and Harley. I will ever be changed as to thinking that my own problems as small as they be are anything to get down about. When I think about what you and others such as yourself have to through everyday. Just to go out seems to be taking a risk, wondering if you will need to rely on someone to help you through your adversity. But, seeing how you overcome each obstacle as it comes and with the help of Harley (the smartest dog on earth) leaves me with a feeling of aw and wonderment. Knowing that we should all be thankful for our time here on earth and the pleasures of family and friends to help us. You are one in a million and I am so proud to be a part of your family (adoptively speaking) and glad to know you. I have so much to learn from you in the way that you deal with everyday life. God bless you, write or call me anytime if I can ever be of any help or anything else that you need. Norm
Norm Carter <norm_carter@questsys.com>
Roseville, Ca USA -

Hi I am 19 years old. I have lived with epilepsy since I was 6 years old. the reason I got epilepsy was because i feel in a water well when I was a child.When I fell i hit my head in the bottom of the well. Been able to go true it because of my family and doctors. especially dear God. Since I was a child I have been having to deal with my seizure. but thankfully I havent gooten on in three year since my medications controls it but I know i have to take my medication for the rest of my life but I thank my hole family for helping me ge though with it.I usually get ggrand mal seizure which get really bad that I have to go to the hospital. But lately I havent gotten any but I hope that I never do anymore. I want to go on with my life.I hope my experience helps others. just email me for any questions.
Maria Iabel Lopez <odie2079@hotmail.com>
Hollister, Ca USA -

I am 42years old, and became Epileptic 5/years ago, suffering 3/siezures on 1/day. Thereafter I was totally controlled on medication, but last week, devastatingly, I suffered a grand mal seizure, and was out for nearly an hour afterwards. I now find that I am in a constant state of anxiousness, and seem to be trembling inside - and in absolute fear of having another seizure. I am seeing my doctor and neurologist next week - and hopefull they will set my mind at rest. I would love to talk to someone, or be part of a support group- as I do not personally know anyone else who is epileptic and feel almost as if I am a total outsider and a bit of a freak to say the least. But most of all, I am so frightened - and feel close to tears all the time, and very trembly and scared to be alone. I hope to talk to those who have successfully 'mastered' the illness and who are now coping well. Kind regards MERCIA JACOBS TEL: 2731-3032190
MERCIA JACOBS <mit@iafrica.com>
DURBAN, RSA RSA -

I am the mother of a 17 yr. son that had a Closed Head Injury and fractured skull Dec 20, 1991. He only had a 5% chance of living and didn't come home for 5 months. He's in a wheelchair and can't talk. His seizures have changed since Sept.23. and he's having grand mal. His liver enzymes have been high and he can't take seizure med. Only 1 thats neurotin and it knocks him out and he has no quality of life. My husband & I have made the choice not to give him this. We are currently thinking about having the Vagus Nerve Stimulation done. (Pacemaker for the brain) If anyone out there has had this done that has a TBI injury please write and tell me. I can't find anyone that has had this. My son can smile and laugh and loves to eat and we are very grateful to have him. He goes to school in a special class and can do this until he turns 21.It also gives mom a break. I'm still new at this computer stuff but would love to chat with anyone that has a child with TBI. He continues to make little baby steps as I call it. God Bless And Remember NEVER GIVE UP!!!! Bonleecan
Bonleecan <Bonleecan>
Columbia, SC USA -

My sister, 48, suffered a closed head injury 15 years ago. She is now legally blind, is unable to speak clearly, has no fingertip sensation (which leaves Braille out) and mobility and coordination problems. When people are with her, it is very difficult to communicate with her as they cannot understand her. Cognitively she is fine and her biggest problem is loneliness. Close family and friends, of which are few, are her only social contacts unless we take her out. I am in the process of working with TBI in Rochester, NY. As our mother, who has been her prinicipal caregiver for 15 years, has not developed lung cancer, I am a bit overwhelmed with responsibilities for both of them as I am the only sibling here. Hopefully TBI here in Rochester will help. It's nice just to be able to read some of your letters and know we're certainly not alone. Thanks!
d winters <develop@frontiernet.net>
rochester, NY USA -

My sister, 48, suffered a closed head injury 15 years ago. She is now legally blind, is unable to speak clearly, has no fingertip sensation (which leaves Braille out) and mobility and coordination problems. When people are with her, it is very difficult to communicate with her as they cannot understand her. Cognitively she is fine and her biggest problem is loneliness. Close family and friends, of which are few, are her only social contacts unless we take her out. I am in the process of working with TBI in Rochester, NY. As our mother, who has been her prinicipal caregiver for 15 years, has not developed lung cancer, I am a bit overwhelmed with responsibilities for both of them as I am the only sibling here. Hopefully TBI here in Rochester will help. It's nice just to be able to read some of your letters and know we're certainly not alone. Thanks!
d winters <develop@frontiernet.net>
rochester, NY USA -

I have read with interest your page on encephalitis. At age 12, I contracted acute viral encephalitis. I was in the hospital for 3 weeks, and later in a children's rehab center for another 3 weeks. I walk on crutches everyday, due to this disease. Still, the lessons learned, the sensitivity I have gained through my envolvement with the ADA and other persons with disabilities have been invaluable. Today, I am 45 years old, married with 3 children and I am a city planner in Virginia. I am on the last chapter of a book I am writing on my youth, leading up to my illness. To those that struggle I wish strength and determination to accomplish your every goal. Thanks for you page!
Jim <Jimbo4466@aol.com>
VA USA -

My brother has a brain stem injury. This happened 26 years ago. All this time he has thought he would get better. He has not. Disabilitie benifits do not pay enough for him to survive. He is very limited to what he can do. I have been searching the internet to find some way to help him. He is still in denial so I do not know how to even approach him to get help. Maybe someone out there can help with info. I hope.
Melissa <damewood@cybcon.com>
Canby, Or USA -

my mom has seizures all of the time from a electrical injury. it's really hard on us all. I know how you all must feel. I'm just a teenager having to take care of my mom. But it has brought us closer than ever.
amy rogis
holland, ia USA -

none I'm interested in epilepsy as a result of uremia and encephalopathy
brenda defourneau <triniayd@aol.com>
chicago, il USA -

i JUST THOUGHT YOU WOULD LIKE TO KNOW THAT THERE IS HELP FOR EPILEPSY. I HAD SEIZURES DAILY FOR OVER 13 YEARS. WHEN THEY COULD NOT BE CONTROLLED BY MEDICATION, MY DOCTOR SENT ME TO A HOSPITAL IN PILADELPHIA FOR SURGERY. THAT WAS 3 MONTHS AGO AND I HAVEN'T HAD A SEIZURE SINCE. AND I AM ON 1/3 OF THE PILLS THAT I WAS ON BEFORE. IT IS LIKE HAVING A NEW LIFE. IF ANYONE WANTS INFORMATION, I WOULD BE GLAD TO GIVE IT.
Joe Trapper <TRAPSPLUMB@AOL.COM>
sCRANTON, PA USA -

Hey there. I thought I'd write to say that this web site has been really helpful in a report I'm doing for college. As a fellow Epileptic, I'm glad to see sites such as this one to inform people of this disorder. Hopefully a cure will be found and I think these sites are a step in the right direction.
John Koenes
Cicero, Il. USA -

EUREKA!! i got it.I am a 31 yr old mom of 3 and a wife. I have been unable to reach out to my family like i wish i could because ihave spent so much time trying to be NORMAL and no one who could really understand. To all who suffer from any type of seizure disorder, or family members all you need is patience and lots of love.I am now learning after 16 yrs of seizures that it is ok and that this who i am and i am quite proud. To all of the Debbies out there we are listening and a prayer to you and your loved ones.
MILLIE <MADISON3@AOL.COM>
NEW YORK, NY USA -

This looks real informative and resourceful.
Sheila Wilson <slw@dbtech.net>
Tuscaloosa, AL USA -

Hello...This is a very nice site. I am doing a research paper on epilepsy and I was wondering if anyone could send me information on how epilepsy effects the body. Thank you very much!
Monica <Monitca02@hotmail.com>
USA -

Enjoyed your page, it's good for me to read words such as these from time to time, keeps me focused on what life is all about Thanks
teresa <nogrubs@aol.com>
USA -

thanks
RUSS MOORE <Manicwon1@aol.com>
st pete beach, fl USA -

Debbie! this is Sandra*. from the E-List... I never knew you and Harley were so cute! I've got a collection of you poetry from the list and still love to read it.
Sandra McCall <sandra.mccall@autodesk.com>
Rohnert Park, CA USA -

My name is Joanne and my 14 year daughter was hit by a truck on Jan.14th of this year. I have been looking for a place to get info. and just to talk to someone who knows what and where I have been. As a mom of 6, 3 at home this has been so hard,and draining in everyway, I dont have a lot of time , but I hope to find time to read more of the guestbook and to find someone to talk to.
Joanne <jocon@ctaz.com>
Bullhead city, az USA -

I'M SO HAPPY TO FIND SUCH AN ENORMOUS AMOUNT OF PEOPLE WHO HAVE GONE THROUGH THE SAME THING I HAVE AND TREMENDOUS AMOUNT OF INFORMATION ABOUT TBI. I AM SEVENTEEN AND ON FEBRUARY 26 OF THIS YEAR, I WAS INVOLVED IN AN CAR ACCIDENT WHICH LEFT ME IN A COMA AND TEMPORARILY PARALYZED THE LEFT SIDE OF MY BODY. I AM NOW DOING MY SENIOR PAPER OVER THE INJURY WHICH CHANGED MY LIFE. THANKS SO MUCH FOR PROVIDING THIS INFORMATION-- I PLAN TO USE IT PERSONALLY TO DISCOVER MORE ABOUT THE INJURIES I SUSTAINED AND EDUCATIONALLY TO COMPLETE MY PAPER!
EMMA LANG <EBRUMMET@AOL.COM>
CLAREMORE, OK USA -

I was just introduced to your web site today. So many people with so many problems. Sometimes I feel like I'm the only one who has the problems and then I see others in so much pain and distress. Really makes me feel like I don't have any problems at all compared to others. I count my blessings every day for the grace that God has bestowed upon my family. When I was 19 and pregnant with my second child I had spells of passing out and seizures. My doctor at the time told my husband that I was just high strung and not to worry. After my second child was born I had another episode in the hospital. Then my doctor decided to have another doctor consult with him and take some tests. The diagnosis: Eplilepsy....I have had Grand Mal seizures since I was 19 years old. I am 55 now. For the first few years I would have seizures at least two or three times a year while on medication. Then eventually as I grew older the seizures grew farther apart. I still had to take my medication . As the years have gone by, I rarely have a seizure anymore. If I do it's because I have forgotten to take my medicine for two days in a row and then.....WOW. I am 55 now and have a son who is 37 and is suffering from a head injury from a motorcycle accident in 1985 and also a head inury from a motorcycle accident in 1993. Needless to say I am an advocate for WEARING HELMETS when riding bikes or motorcycles, but I am NOTan advocate for riding motorcycles at all!!! My son has been diagnosed as Organic- Bi-Polar Manic Depressive. Needless to say his life has been turned upside down with mood swings from depression for weeks to manic episodes that last longer and longer. The doctor told us that his episodes would only get worse as he grew older. He doesn't think there is anything wrong with him because to him he's not any different than he was before. He has been in denial for 13 years and will not admit that he has a disability. It's very disrupting for the whole family when he gets in these manic states and we (the family) are always the bad guy. He is in a hospital right now taking treatment. He is resisting treatment and it's very hard when you love someone and you know they are in pain and you have to do the "tough love" thing and think what's actually best for the disabled person. It's the hardest thing in the world to do. To look at my handsome son you would not think anything was wrong with him, but his decision making capabilities has caused him so much pain and grief in the last 13 years and we as a family cannot help him. He thinks and reacts like a small child. We do what we can but we need support and so does our son, but he doesn't think so. Are there any people out there who are "families" of survivors of head injured persons who can talk with us and relate and maybe give us some insight to our problem? We feel blessed that our son's life has been spared so many times and we feel that the Lord has a plan for him or he would not still be here.
Carol <1881n250@idir.net>
USA -

Debbie, You are a courageous young woman who has fought against the odds and you haven't let your disability disable you. I found your poem " Broken Dreams" quite good. I b belong to a program called VISTA ( a program for young adults with learning disabilities and those with traumatic brain injuries) - it is a great program. I myself am j just learning disabled, but have seen many of my friends here suffer from tbi's, and a good friend of mine has epilepsy. You certainly gave me a better understanding o of tbi's and the struggles you face. thanks for the insight! Melissa Culbert
Melissa Culbert <swb-mmc@prodigy.net>
Stamford, CT USA -

I am a 33 year old female who was recently diagnosed with epilepsy. I had a "grand mal" seizure 2 weeks ago while driving. I was extremely fortunate that no one was hurt, including the F150 that I rear-ended. I woke up in the hospital emergency room. This was the first seizure that I have had in 17 years. I had a seizure in 1982 when I was a Jr. in college that they never did determine the cause of. I was on phenobarbital and dilantin for a year and then the Dr. took me off of it. 3 years ago, I started having what I called "hot flashes". It was a sensation that I would get in my head & I would get warm in the upper part of my body. It's extremely hard to describe but I now know that these were Auras. I could never distinguish what was the cause of these and they would come at different times. I was alert when these were happening and could carry on a conversation with you and you'd never know anything was wrong. They would last around 2 minutes. Sometimes I would hear voices and recall memories but not all the time. What was really strange was there was this one particular stop light that I recall having quite a few of them at. The last thing I recall before my seizure was having this "hot flash". That is why I'm certain they were auras. At the emergency room, the Dr. put me on Tegretol (3 times a day) and referred me to my neurologist. I had been seeing him for these "hot flashes". He had an EEG ran on me prior to this seizure that didn't show anything. I thought I was crazy and was just imagining these "flashes". The day of my seizure, I had been to see my gynecologist to have a hormone check to see if I was going into early menopause. I've read alot of these stories and realize just how lucky I have it. I've had 2 seizures in 33 years and live a normal life. Is there anyone else out there that has these "hot flashes" or auras as they're called? Or has had the same experience as I've had? God bless you all and you'll be in my prayers!!!
Kenna <Froggy2@apci.net>
Belleville, IL USA -

vist was very helpfull in letting me unstandstand what my clients are going through. Thanks
Jamie <jamie67lynn@yahoo.com>
alexandria, mn USA -

I am a physical therapy student at the University of MIchigan and we were asked to review websites pertaining to TBIs for our clinical neurology course. I loved your site and appreciate all that you are doing. Please keep updating this site as it is a great resource and a great place to visit. Thank you.
Cara Bonino
MI USA -

I found your page by accident tonight after having another argument with my partner of 2 1/2 years. He suffered a TBI in an automobile accident in 1992. I love him very much and would do anything to help him. He is also a practicing Alcoholic, which only makes matters worse.This is what usually causes the arguments. 99% if the time he is a wonderful man to be with. The other 1% is horrible. We live in a rural area, so there aren't any types of support groups for either him or me. I found several sites that I think will be helpful for us. Thank you for sharing your story and to all others who have also done so. I look forward to having others to communicate with and get support from who can relate to how I feel. Hopfully, I can also be of help for others.If anyone out there can offer any support or guidance, please write me. Thanks bobbie bobbie@Tstar.net
bobbie <bobbie@Tstar.net>
llano, tx USA -

I found your page by accident tonight after having another argument with my partner of 2 1/2 years. He suffered a TBI in an automobile accident in 1992. I love him very much and would do anything to help him. He is also a practicing Alcoholic, which only makes matters worse.This is what usually causes the arguments. 99% if the time he is a wonderful man to be with. The other 1% is horrible. We live in a rural area, so there aren't any types of support groups for either him or me. I found several sites that I think will be helpful for us. Thank you for sharing your story and to all others who have also done so. I look forward to having others to communicate with and get support from who can relate to how I feel. Hopfully, I can also be of help for others. bobbie bobbie@Tstar.net
bobbie <bobbie@Tstar.net>
llano, tx USA -

I found your page by accident tonight after having another argument with my partner of 2 1/2 years. He suffered a TBI in an automobile accident in 1992. I love him very much and would do anything to help him. He is also a practicing Alcoholic, which only makes matters worse. 99% if the time he is a wonderful man to be with. The other 1% is horrible. We live in a rural area, so there aren't any type of support groups for either him or me. I found several sites that I think will be helpful for us. Thank you for sharing your story and to all others who have also done so. I look forward to having others who can relate to how I feel. Hopfull, I can also be of help for others. bobbie bobbie@Tstar.net
bobbie <bobbie@Tstar.net>
llano, tx USA -

I found your page by accident tonight after having another argument with my partner of 2 1/2 years. He suffered a TBI in an automobile accident in 1992. I love him very much and would do anything to help him. He is also a practicing Alcoholic. 99% if the time he is a wonderful man to be with. The other 1% is horrible. We live in a rural area, so there aren't any type of support groups for either him or me. I found several sites that I think will be helpful for him and me. Thank you for sharing your story and to all others who have also done so. I look forward to having others who can relate to how I feel. Hopfull, I can also be of help for others. bobbie bobbie@Tstar.net
bobbie <bobbie@Tstar.net>
USA -

When I was 13 years old, I was diagnosed as having viral encephalitis. I was in and out of consciousness for 1 week until they figured out what was wrong with me. I lost a lot of my memory and had a hard time adjusting afterwards. I was put on phenobarbital and was a walking zombie throughout my 8th grade year. I am 30 years old now and I have found that I still suffer. It was very comforting to know that I wasn't the only one who had this viral infection and that it is common to still have some of the symptons. Thanks for your website. I have learned a lot about what happened to me.
Tammy Browning <Catpause@aol.com>
Seaside, CA USA -

I am a new occupational therapy student at Eastern Michigan University. I'm interested in learning about TBIs and would love to hear any comments regarding OT services..what did they do for you, did you find it helpful..why or why not? Thank you in advance, it's important to know what is working and what needs to be improved.
Daina Miller <daina_miller@yahoo.com>
MI USA -

I am the father of a 14 year old daughter who has TBI resulting from a car accident in 1994. She was in a coma for 4 months, and is paralized on her left side, with severe ataxia on her right. She has very severe mood swings that is very upsetting to us all. She has recently started to get worse with her behavior and has been put into different hospitals for behaviorial problems with no end in sight. I have not been able to find the right help with her for all these years and am in desperate need of information. I live in Eastern Tennessee with limited resources. If anyone has any information that they could give, please e-mail me. Thanks..... Richard......
Richard <Lskynnerd@yahoo.com>
Mt.Carmel, Tn USA -

I am a graduate student at Central Michigan University. I am currently taking a course on TBI. I was searching the Internet and found your web site. Thanks for all the valuable information.
Kary Tomaw <32fofjt@cmich.edu>
Mt. Pleasant, MI USA -

I am a graduate student at Central Michigan University. I am currently taking a course on TBI and I was searching the Internet and found your web site. Thanks for all the valuable information.
Kary Tomaw <32fofjt@cmich.edu>
Mt. Pleasant, MI USA -

My daughter was in an accident in January and since has suffered with seizures and loss of taste and smell. This is all new to me and I am glad there is some place we can get answers to some of our questions. Thanks
Tea <teahhh@aol.com >
Charleston, SC USA -

I am an aneurysm survivor with 3 years under my belt. I would love to coorespond with a person who knows what it's like. Robyn
robyn <rkgoodwin@ou.edu>
USA -

I am a student at Stonehill College in Easton, Mass. I was asked to do a project on TBI which lead me to you. Right now I'm wearing a gold chain around my neck. You can't see it. I can't see it. In fact, no one can see it. But on every link of that gold chain, there is the essence of a person whom I admire and from whom I gain strength. I wanted you to know that you have formed a link on my gold chain. Good luck and keep writing. Let nothing get in your way.
Evan J <evnaflow79@juno.com>
freetown, MA USA -

I've learned a great deal by viewing your notes and stories. My husband suffered a TBI 3 weeks ago. This is still very new to us. We would like information on several things that are happening to him right now. 1) constant headaches - how long before they go away? 2)Will he ever get the months of memory just preceding the injury back? This is the scarriest thing our marriage has ever endured. Thanks for your help.
J. Welch
wa USA -

check this out. there's this guy. i stole his sweatshirt 5 years ago in tampa, moved away and hadn't seen him since. i bumped into him on AOL and we started chattin. found out that it was him and we've been talkin ever since. we have the same year and model car, the same furniture, tele and all. we both have a cabin in the same neck of the woods in hiawassee ga, it doesn't seem like much, but i think it's fate. i am so in love.... <3
MySsY <DjPhAtKaTt@aol.com>
jax, fl USA -

I AM 54 AND I LOVE PEOPLE WHO WRITE POEMS HERE IS A POEM I AM VERY GAY TODAY
ANTHONY NEONAKIS
WELLINGTON, NEW ZEALAND -

I AM GAY
ANTHONY NEONAKIS
WELLINGTON, NEW ZEALAND -

I am a 23 year old female and have been going threw seizures since I was 5 years old. I use to go threw 6 to 10 a day and my docter could not help any more then medician I am now only going threw them when I am running a temp. or when the stress is extramly hi i was wondering if you had any comments thank you for reading this.
Michelle <Mickle24@aol.com>
buffalo, NY USA -

My mom is 49 years old and has had epilepsy since the age of 17. Grand Mal seizures-coming in clusters for several hours at a time, she has gone into status few times. Her seizures have never been controlled with med's. She has been on every anticonvulsant available. In 1991 she had brain surgery to try to stop the seizures...it didnt work..it only made her situation worse, alot worse. Now she has suffered a major personality change, behavioral problems, and just plain and simple "she's not the mom that I had when I was growing up". She has tried to take her own life several times and is just a very unhappy person. I cant help but wonder why she wasnt offered any type of rehab after the surgery..it was obvious that she was having problems living a normal daily life. I tried to get her into several places and they just said she had no problem. Now here we are 7 years later...she is in a psych-facility for the suicide attempt in May 1998. HELP!! I am the only one who even cares what happens to her, and I feel totally helpless, and she has changed so much..she thinks that I am being mean to her and I think she hates me, I used to be the light of her life.Please e-mail me if your situation is similar or have any suggestions.
Kim <ZIMRMN2@aol.com>
Little Rock, AR USA -

Dear Debbie, I am working with people who have survived traumatic and acquired brain injuries. I would like any information you may have on films, support groups, etc. Thanks!
Lynnea Ritz <lritz@btigate.com>
USA -

i came across this website on saturday, october 24, 1998, and i'm glad i did. i don't have any health problems other than acne at the age of 41 years old, but i have hoped to have love, caring and sharing at this age. i'm grateful to god to allow me to have this computer and to be able to afford the internet. your website has given me more hope and i do appreciate it to the fullest. my words alone can't express my deepfelt gratitude. it is only god that allowed me to look up such important subjects. i first looked up sadness, and i just continued looking up words i thought might lead me on to others. and here i am, looking up hope and eventually, i'll be looking up prayers, and i don't know what else at this moment. but because i hoped to continue growing positively in my life, i'm growing more and more. some days just seem hopeless, but i guess that could be normal, in that i looked up the word sadness, and i discovered that it's ok to be sad, and that it's a sign that one really and truly cares about others, etc., i hope my hopelessness is perfectly normal, and that i can get hope even out of my hopelessness. thanks again for this subject on the internet. i hope you can respond to this email.
noreene m. bostick <nbos105114@aol.com>
new orleans, la USA -

Dear Debbie, I have enjoyed reading your poems and stories. I too am a TBI/Epilepsy SURVIVOR. I had a virus that attacked my brain called viral encephalitis in 1994. I was 30 years old when this happened. I can really relate to your poems/stories. I also have personally felt similar to the emotions you have expressed in your poems/stories. My entire brain was swollen, and the doctors did not even know what kind of cognitive ability I was going to regain or any kind of ability to comprehend anything ever again. I am a walking and talking miracle before people. The Lord blessed me! I had been an administrative secretary for 12 years, and I was never sick before other than an occasional flu or cold. The doctors said that the virus came from a mosquito bite. I was greatly shocked to find myself in a hospital bed with my head swollen and hurting grandly, and I was unable to remember anything. I lost my complete memory. I was erased you may say. I have gone through speech therapy, physical therapy, and occupational therapy to try to regain my ability to be able to live. By the great grace of God am I even able to read much less be able to remember things, (which my brain is still healing) and be able to walk. My body was affected with paralysis, and I had to be literally hand fed by another person. The left side of my body is still affected at times as I go through a seizure with paralysis. I am also able to still type. My skills are still retained. Thank you Lord! I have seizures though left from the illness, which I have never had before. I am also on long-term disability. I still have trouble with my memory, but I am trying to make the best of it. Adapting you may say, because, you see, I have no other choice. I notice that I do not do well under stress/pressure. I am more apt to have a seizure. I notice also that I am slower in my abilities with certain tasks that I use to perform in a more quick manner. The Good Lord said, "Do not go on your own understanding." That particular Bible verse has really helped me get as far as I have (along with many others), and I also continue to hold God's hand and walk in His ways and not my own. My plans are now His plans, because my life has completely changed. I must admit it is very, very hard at times and there has been a lot of tears that has been a great part of my healing, and I was very, very angry that this happened to me, but if I can help one person in my life for Him it is well worth the great trial that I have had to experience. If someone would like to just talk and needs someone to listen and support them as they go through their great trial, please feel free to email me. I am here for you. With great love and mercy may God bless you! Love, Dianna (LtlePeach@AOL.com)
Dianna L. Mahl <LtlePeach@AOL.com>
Oakley, CA USA -

very interesting!!! sexy017
Kate <sexy017@aol.com>
waterford, N.J USA -

Dear Debbie. Found your site to be extreamly informative and heart lifting. I am a TBI survivor. Due to a motorcycle accident in 1987. Due to seizures I was retired from my job as a police officer in California. I was on dialantin for several years and have taken myself off the medication as it was causing me to loose my teeth. I am searching for other medications, Natural or otherwise that may help. I think I am seizure free now as I have not had one in over five years but the aura's are sometimes haunting. Anyway thanks for the site. I'll be back..
Bob White <bobnrobn@cpros.com>
Grants Pass, OR USA -

I have an uncle who has epilepsy. I would love to know what he is going through and what can be done to help him. I don't know a lot about it, so when I had the chance to do a research paper, I knew my topic was going to be epilepsy. I would really appreciate any information anybody could send me. Thank you very much!:) P.S. your web site is great :)
Amanda DeBerg <evercleer@hotmail.com>
Cody, Wy USA -

I was hit by a car while riding my bike on 4/26/85. I split my head open on the windshield, landing in the grass, picking up a fungal infection. After being airlifted to Long Beach Mem. Med. Ctr., I was in a coma for 17 days, in the hosp. for 4.5 months, and underwent eight brain surgeries. From my TBI, I had a petit mal seizure, and was put on Dilantin 13 years ago. Unfortunately, every EEG and Dilantin level I have had done says I need to continue taking the medicine for the rest of my life due to irrregular brian activity. The whole story is too long to tell, so I will end off with this, WHEN YOU RIDE A BIKE WEAR A HELMET!!!!!!!!!!!!!!!!!!!!!
Lee M. Spitzer <hclspitzer@aol.com>
Cerritos, CA USA -

Second try to add to your guestbook. Sometimes the rubble I have for brains doesn't work so well... Five years ago the front tire of my bicycle blew while I was riding down a hill in San Francisco at high speed. My helmet might have kept my body alive, but the *me* who lived in that brain was killed. The new 'me' was put together from surviving fragments of that brain, but a lot of holes are left. Some cognitive deficits that are downright weird. And, potentially fatal, a biological mood disorder caused physically by the brain injury and, therefore, very resistant to treatment. Depression is my middle name. So I would like to emeet some of you out there who might have similar trouble. Maybe compare notes on which treatments have helped and which have not. What personal techniques have helped avoid falling into a depressive episode, what has helped get out of one. What defense mechanisms can guard against the worst outcome of severe depression. I've just started to explore your great site, Debby. You are a good person.
Tony Finnerty <tfinnerty@jps.net>
Vacaville, CA USA -

Hi everyone welcome. I'm back here to invite everyone to please read my short true stories. I have new ones and I had another one revised. About surviving brain inury and sign my new guessbook with your comments. Thank you all and bless you. http://www.geocities.com/HotSprings/Spa/7713 Thanks Again David R.r
David R. <ElToro518@aol.com>
Lynn, MA USA -

I suffered a traumatic brain injury after a horse fell over on top of me.I was wearing a helmet that they believed saved my life.I had to learn to walk talk read and write all over.During this process of trying to be a person,my husband was unable to handle the tragedy,he left and divorced me.Life is very difficult but I can do these things today with alot of effort and pain.I have many other injurys from the accident however,I lived beyond anyones believe so I must be strong and try to make the best of every day,I am alive. Thank you for hearing my story, BJ Zirkan
Brenda Zurkan <BrendaJ4@aol.com>
toledo, oh USA -

These poems and stories are too long.
Scott McClusky <none>
Euoroguay, Cuba -

My son is 9. He was diagnosed as an Epileptic 3yrs. ago He was found to have brain damage in hi right frontal lobe of his brain. He is a bright and wonderfully friendly kid. He can make friends whereever he goes.Unfortunately he cannot have any sleepovers because of his problem. The parents of his friends are not comfortable with the fact that Ben MIGHT have a seizure. This makes him DIFFERENT! All he wants is to be the same as everyone else. The seizures started in Kindergarten.He is now in Fourth grade and lovesit. He had a spell yesterday that lasted only a few minutes but he didn't tell the teacher because he didn't want to disturb the class. He is my only child and I understand how he thinks. The teacher did not know that Ben was having a problem. I only hope that someday Ben can lead a normal life without the worry of having a seizure. Thanks for the chance to tell my story.
Caralee Van Loon <cara208@aol.com>
Grosse Pointe Park, Mi USA -

hi i am a mum of a 16 year old boy david he was assaulted at school by three boys when he was just 13 years old he has brain damage and larst year he has no sight in the left eye from the head injury we have lots of things to deal with i would love for things to go back to that day in march but now my life is looking after him thanks lots and love to all angie
angela griffin <griffina @mpx.com.au>
wagga wagga, nsw australia -

hi i am a mum of a 16 year old bay david he was assaulted at school by three boys when he was just 13 years old he has brain damage and larst year he has no sight in the left eye from the head injury we have lots of things to deal with i would love for things to go back to that day in march but now my life is looking after him thanks lots and love to all angie
angela griffin <griffina @mpx.com.au>
wagga wagga, nsw australia -

Thank you for a beautiful and informative site. We as families of TBI survivors, and TBI survivors themselves, have a very special path to walk. Only with God's intervention and and education of the public, along with determination from all of us, will we be able to beat this devestating injury, and stay focused on lifelong rehab. God Bless to All Love, Tammy Mother of 20 year old TBI survivor
Tammy Brunt <catsoul@surfsouth.com>
GA USA -

I am 24 yrs old i have had partical complex seizures for 24 yrs .... at age 15 i had brain surgery i was having more than 110 seizures a day. the surgery they took out the right side of my brain in the middle of the surgery i had a stroke and was semi-paralized..now i am having 1 seizure every 3 mnths. all my plans in life have been screwed.. if you want to talk email me at cgalst
CLINT GALSTER <CGALST>
WAUKESHA , WI USA -

I am 24 yrs old i have had partical complex seizures for 24 yrs .... at age 15 i had brain surgery i was having more than 110 seizures a day. the surgery they took out the right side of my brain in the middle of the surgery i had a stroke and was semi-paralized..now i am having 1 seizure every 3 mnths. all my plans in life have been screwed.. if you want to talk email me at cgalst
CLINT GALSTER <CGALST>
WAUKESHA , WI USA -

In my school we have a required paper called senior project. In order to graduate we have to pass this project. The topic of our senior project has to be realted to our shop. I am in Early Childhood Education and my topic is cause and treatment of epilepsy.If there is any information you can send me about this topic, it would be greatly appreciated. Thank you!!
Jennifer Kishbaugh <jenkissie@hotmail.com>
Townsend, De USA -

Debbie: Please refer to my e-mail. Thanks for your terrific effort to help get the message out! We're all in your debt! Monk :)
Art L. <monk6272@aol.com>
Long Island ( ! ), NY USA -

I have been married to an epileptic for 22 yrs. I attended my first support group last month. My husband started having seizures when he was 10 yrs. old. He never told his family about his deja vu feelings. I had been dating him for several months before I witnessed a seizure, even he didn't know what they were. He always tried to minimize the seriousness of his problem. At first they were only a few times a year, but as they became more frequent and more strange I took him to a DR. He was only diagnosed 12 years ago. He has tried lots of meds. they do not work. He recently wrecked his car again. He is having trouble accepting that he should no longer drive.(my car) He is very artistic and intelligent, he is back in college trying to complete his education. We have only had a computer for 2 weeks and the internet for 2 days. I am so glad to have found this page. This is why we hooked up. We'll be looking for lots of help and advice.
R.P.Smith <sreesree@swbell.net>
kansas city, mo USA -

I Have been an Epileptic since 1972, I have been through people ingoring me when I have a GrandMal seizure,and at This point I have Partial seizures, but thank goodness a aura.I Know how it feels when u want a job, but the manager says no, but says it has nothing to do with my Epilepsy. I have decided it is my job, to educate people about my seizures, and what They can do if I have one with them around.Please don't be afraid of me, Just ask what You can do if I have a seizure around you. Bless You, For having this webpage. KG2@aol.com
Kelley <KG2@aol.com>
CA USA -

I'm a friend to a person with epilepsy. I don't know how it is to have epilepsy but I understand a lot about it and I know a little about it.
Lavinia Williams <ciacil@ptd.net>
York, pa USA -

I have epilepsy
Stephanie <Pare123@aol.com>
West Gardiner, me USA -

'SURVIVORS', AS WE ALL REALIZE,JUST CAN'T GIVE UP!! BACK IN 1985, I acquired my T.B.I. during my first gondola ride in Venice, Italy. I was DEFINITELY in the WRONG place at THE WRONG TIME; so CRASH-BOOM occurred, which, THANKFULLY, I SURVIVED!I spent ten weeks in a coma and was then flown back to the USA for further recovery. WELL, I WANT TO TELL YOU-ALL, THAT ALTHOUGH THAT 'CRASH-BOOM'RATHER SIGNIFICANTLY ALTERED the former 'JANE', today's Jane is doing great! I'm STILL HERE! A SURVIVOR JUST DOESN'T GIVE UP!
Jane Popkin <rpopkin@erols.com>
Glen Cove, NY USA -

Hi there. I'm the Coordinator for a fairly new Brain Injury Association. We are looking for ideas on how to expand our services. You have a great website! Thanks for the info. Carol Paetkau Community Outreach Coordinator Fraser Valley East Brain Injury Association
Carol Paetkau <paetkau@uniserve.com>
Aldergrove, BC Canada -

I think your for your page. As a TBI survivor I found it very frustating for family and friends to understand how in the span of a few minutes, I became a "different person". However, it was not all in vain as I have written a book about my experience and subsequent rehabilitation entiltled "Conquering the Darkness". This is exactly what TBI meant to me as I was "in the dark" for several years. Through a software program that I was lucky enough to find I was able to work on my cognitive and memory problems. I am now on a crusade to make the public aware of TBI and help victims as well in any way that I can. If anyone has any questions, or would just like to talk via email, please email me and I will respond as quickly as is possible.
Deborah A. Quinn <DebbieQ@aol.com>
Naples, FL USA -

This is a great reference site with a lot of information for both the professional, the family and the patients themselves. Thanks for being so easy to find!
K Bond, MS OTR/L <bondkab@aol.com>
USA -

This is an extrodinary page about extrodinary people. It makes me feel good to know that I am not alone. I could cry though, because I am not alone. The stories of hope and preserverance have touched me forever and the poetry has set up a home in my heart. Like many of you I write and read poetry, best meds I take. I am a thirty year old mother of 3. The hardest thing, next to finding a good neurologist, has been accepting help from my husband and little ones. Medication doesn't always help my body, but this page has helped my soul. You are all in my prayers
Gidget <nanookg@yahoo.com>
USA -

Iv just started working with people that have brain injuries. the more imformation i can find the better.thankyou. John Yule
JohnYule <JohnYule@bigpond.com>
newcastle, N.S.W Australia -

I presently work with ABI and TBI victums and I am finding this lifestyle of working and rehabilitating these people very insightful and rewarding. I have a bachelors degree for sociology and working towards becoming a physiotherapist. The one thing I think I have learned from working with these people is that, things change, take care everyday because it only takes 1 second for a whole life to turn right around. I don't pitty the people I work with, I just try to make their days as functional as possible and to bring normality back into their lives. I plan on making this line of work my life and hope to make the people I work with happy on a daily basis.
Patrick <pheonix@itcanada.com>
Welland, ON Canada -

I am 32 years old. I was diagnosed with Epilepsy 11 years ago after a grand mal seizure that occured out of the blue . My seizures were uncontrolled from that moment on for almost a year, having 2 to 3 grand mals a week. No one is sure what brought my seizures on. Seizures took over my life for a very long time... but I managed to graduate college and go on to get a masters in education. I am currently a teacher in the state of Tennessee. I am having some problems living life day to day out of fear of SEIZURES ! I had a seizure while driving 4 years ago. Fortunately, I knew it was coming and was able to pull off the road in time. I started having anxiety attacks about driving. These anxiety attacks have turned into panic attacks. I have tried counseling which helped me get control to some extent. I would like to talk with someone through e-mail that may be dealing with or has delt with panic due to fear of seizures. I have been seizure free for 4 years now. (only one after the driving thing) ! Great things can happen if we just let them !!! =)
vonette <tiggerr30@aol.com>
memphis, tn USA -

I am a survivor of TBI that happened when I was 5 years old. I fell out of moving car and fractured my skull. I had 40 stitches in my head. After I had my 2nd child I started falling down. I was diagnosed with low sugar. A few years later and many falling over backwards episodes, I was diagnosed with with epilepsy. I was told that they could "fix" my epilepsy, but I would have to have brain surgery to remove the scar tissue that is pushing on my brain, not an option fo me. The dr also said that it would just come back more than likely in 16-20 years. Sounds like a long time but I was only around 30 at the time. Now at 45 and on my third medication I am doing fine. The first one made me extremely dizzy, the second one worked great for about 8 years then I started having severe hives and rashes, but I could not convince the drs that it wast the Tegretal, I finally found one who listiened and am now on one that, aside from some weight gain, hasn't caused any problems so far. I am very glad that I found this page. I don't feel alone anymore.
Joanne
USA -

I am a survivor of TBI that happened when I was 5 years old. I fell out of moving car and fractured my skull. I had 40 stitches in my head. After I had my 2nd child I started falling down. I was diagnosed with low sugar. A few years later and many falling over backwards episodes, I was diagnosed with with epilepsy. I was told that they could "fix" my epilepsy, but I would have to have brain surgery to remove the scar tissue that is pushing on my brain, not an option fo me. The dr also said that it would just come back more than likely in 16-20 years. Sounds like a long time but I was only around 30 at the time. Now at 45 and on my third medication I am doing fine. The first one made me extremely dizzy, the second one worked great for about 8 years then I started having severe hives and rashes, but I could not convince the drs that it wast he Tegretal, I finally found one who listiened and am now on one that, aside from some weight gain, hasn't caused any problems so far. I am very glad that I found this page. I don't feel alone anymore.
Joanne
USA -

I HAVE BEEN A TBI SURVIVOR NOW FOR 4 YEARS WAS HIT IN THE HEAD WITH A 5lb ROCK WHILE DOING SECURITY WORK AT A BUS STATION IN 1994 THANKS FOR HAVING THIS PAGE
STEPHEN J. SWETT <swetthog6@aol.com>
ALBUQUERQUE, NM USA -

To every single person, every organization who helps provide information on this subject, thank you. My wife Karen (recent TBI from a bicycle accident) and I are only 10 days donw this road, no idea where it wil ultimately lead, but to know we are not alone and some of the things we will be encountering is so much help. Thanks.
Pat Brunsdon <peeb@pc.jaring.my>
Kuala Lumpur, Malaysia -

My 26 yr old brother died from SUDIP. That is what the doctors call Sudden Death in Epilepsy, but they won't tell you that it can happen. Tell people you love about it...and ASK YOUR DOCTOR FOR DETAILS!!!
Wendy Leigh Motherway-Toftum <wtoftum@yahoo.com>
Minneapolis, MN USA -

Hello has anyone read my Short True Stories. Please E-mail me with your comments and State you are from. Thank you. http://www.geocities.com/HotSprings/Spa/7713 Today's Date 8-31-98
David R. <ElToro@aol.com>
Lynn , MA USA -

What I have seen, looks good. I had a Left Cerebral Hemorrhage 8/15/81 Took a lot of work and support from total strangers, some who became good friends, and in 1995 I became a licensed social worker. In 1996 I went on line where my State of Idaho License is worthless, once the signal crosses the State Line, but that's Okay.(: It is my opinion that basically, Stroke and T.B.I., as well as most all brain injuries are very similar. However, the Traumatic Brain Injury is the worst, just by the nature of its occurrence. Debbie, I would very much like to communicate further with you regarding some issues. Please, contact me at your convenience? Rob Evan Hughes, L.S.W., Survivor, and Advocate for Families of Stroke and Other Traumatic Injuries. http://www.viplaza.com/hughes/
Rob Evan Hughes, Stroke Survivor <robeh@gemstate.net>
Pocatello, ID USA -

Greetings to all who tread the road in recovery from a Traumatic Brain Injury. I am a TBI "Survivor" just over 7 years post injury. Since the undergoing of 2 emergency brain surgeries, just 10 days apart, I have, with the help of numerous people created a book titled, "Poetic Awakening." The book is Inspiring/Spiritual in content, yet cuts across all religious barriers. The book is written for any who are in recovery from a Traumatic Injury to the brain. Many have commented the book was also filled with hope for the loved one's of the injured. To obtain your copy, e-mail me at mtnbliss@yahoo.com. Please be sure to include a mailing address to where a book order form may be sent to you. Faith; Hope; Love and Peace, John Snyder, TBI "Survivor;" Author
John Snyder <mtnbliss@yahoo.com>
Young Harris, GA USA -

I recently (well, today) learned that the person whom I love most has epilepsy. He was afraid to tell me because he thought I might reject him, but of course I wasn't about to let that happen. As I live in a foreign country it is sometimes difficult for me to do extensive research in my native language (English). This webpage certainly has provided support and information, and I expect to be checking back periodically. Doumo arigatou gozaimashita.
Miya L. Adams <miyaowmix@aol.com>
Chiba, JAPAN -

my daughter doesn't have epilepsy, she has been diagnosed with AICARDI SYNDROME. She has seizures on a daily basis, and we like alot of you have tried everything. Where do we go from here? For more info on Aicardi Syndrome-AICNews@aol.com
melanie <ravenms@yahoo.com>
jasper, alabama USA -

I have had epilepsy for about 25 yrs and found this page very informative.You must have put alot of hours of research into it.
Deb
USA -

I am 25 years old and I have a 5 year old little girl with epeilepsy. She has had it since she was 6 months old. She was diagnosed with Hemimegaencephaly. We tried just abotu every seizure drug available. At 2 yrs old she has a hemispherectomy. This has helped her a great deal in her seizure control. She still has them every once in a while but they are not as intense or as long as they were before the operation. I would like to talk to anyone who is in the same boat as I am or has a child with a seizure disorder.
Alison <BsBbyGrl@aol.com>
San Diego, CA USA -

@ 42 years old this is the first place i have found comfort and been able to speak freely about epilpsy it has been with me for thirty years and is the one monkey that is attached to my back that i have not been able to defeat learning to live with has been hell at times, but when i forget about it things start looking good a siezure reminds me what is really going on that is when i go through the low points. i have had to leave the construction feild and go to college mostly for the safety of my dear friends that i worked with i do not think they ever worried about me having a seziure but in the back of my mind when ever i was running heavy equipment i worried about it and i feel the stress encouraged the seziures. THANKS EVER SO MUCH lee
lee siegrist <lsiegrist@hotmail.com>
wa USA -

I have a ten year old daughter who has been suffering from seizures since birth. We have tried numerous medications to control them, and although the seizures are less frequent than they used to be, they are still uncontrolled. we have tried phenobarbitol, mysoline, depikote,tegratol,felbatol, and topamirate - the last two she currently takes. One seizure can last up to two hours and only valium or ativan stops them. To lessen our trips to the ER, we are able to administer up to 4 milligrams rectally at home. This usually works but the side effects take a great toll on Jamie. There have been many sleepness nights worrying if she is going to have a seizure in her sleep and I am so scared she will die from one. Last night was the most panicked I have ever been. You would think I would be used to her seizures by now, but this time I felt she really could have died. She couldn't get a breath of air and then she vomited and started choking on her vomit. Luckily, this siezure only lasted about two minutes. I feel completely lost!!!!!
Jodi Welch <jowelch@mindspring.com>
USA -

I have problems with epilepsy. I am struggling with it a lot. I like your web page
Leslie Bates <cvpbates@hotmail.com>
Toronto, ON Canada -

I have been an epileptic since the age of seven. When I was a baby I had infintial spasms. They put me on ACTH for a short while and it looked like I was not going to live so they annointed me and later that week I was getting better. Seven years later I started again. I have had them for nine years now and I am not doing to well. So I will try a new medicane. HOPE IT WORKS!!
Karen Giacobbe <MGiacobbe@aol.com>
Chandler, AZ USA -

On August 9, 1998 my mother was taken to the hospital with a terrible headache. About 1 hour later after CAT scan has been done she was diagnosed with the anuerysm. Doctor stated that is very serious and there are possibilities of a brain damage. Swelling of a brain also occured. They couldn't even perform a surgery on her due to a very weak heart. Now is the 10th day since it happened and there is no improvement whatsoever. At this point the doctors don't give any chance for her to come out of it. If her heart and lungs don't fail, she will be able to live but without having any control of her body and without knowing what is going on around her. These are prognoses for her.I just wonder if there is anything else it could have been done or can be done to help her.
Kris Prajzner <prajzner@sprynet.com>
Ventnor, NJ USA -

On August 9, 1998 my mother was taken to the hospital with a terrible headache. About 1 hour later after CAT scan has been done she was diagnosed with the anuerysm. Doctor stated that is very serious and there are possibilities of brain damage. Swelling of a brain also occured. They couldn't even operated on her due to a very weak heart. Now is the 10th day since it happened and there is no improvement whatsoever. At this point the doctors don't give any chance for her to come out of it. If her heart and lungs don't fail, she will be able to be alive without having any control of her body and without knowing what is going on around her. These are prognoses for her.I just wonder if there is anything else it could be done or can be done to help her.
Kris Prajzner <prajzner@sprynet.com>
Ventnor, NJ USA -

I wish to communicate with someone who has been married to an epileptic. I was married to a man who had grand mal seizures. Life was quite challenging each day. We were married for 22 years but are divorcing now.
Debra L Turk <Turk4433@AOL.com>
New Castle, PA USA -

Debbie, I wanted to tell you that I was moved by your story. I am 21 years old, and my mother has a brain injury. I run a youth group here at home for kids who have parents with brain injuries and I also have spoken at conferences about my situation. One thing that I stress in my speeches is that I am so proud of all that my mother has accomplished in her life and since her injury. I understand now that she may not be like most moms, but she's not a worse one because of her injury. I often wonder what our lives would be like had my mother not been injured, but I'm not always sure that I would want it that way. Her having a brain injury has made us much stronger people.
Tara
Calgary, Canada -

My father had an aneurysm and survived without Real Big problems, now my nice (28) had it to weeks ago. Thanks for the extra information
Joeri <Joerivd@advalvas.be>
Duffel, A'pen Belgium -

I loved reading the guest book. I have a 14 year old little girl who has TBI. thanks for all the help.
Joanne Ruiz <jocon@ctaz.com>
Bullhead city, az USA -

I had a car accident in 1990. I suffered a closed head injury and now have short term memory loss and seizure disorder.
Beth <sitterb@provide.net>
Riverview, MI USA -

I just wrote an e-mail with another address my valid address is mdeje10396@aol.com I have had epilipsey since i was 12 and have experienced alot from getting incompletes in college to breaking teeth on the floor( head banged with the floor- you'd think i were at a heavy metal concert) . It made me weak, but now i am equally as sick but see things differently- i was at suicidal points and now I'm just happy that I have the luck to live another day! Please wont someone write me and say they understand?... that was my problem my family only could sympathize not empathize what a difference epilipsy can cause in your life. I think everyone understands alittle better now too. please write me at this address... mdjcarpediem@hotmail.com or mdeje10396@aol.com , by the way carpe diem in latin means sieze the moments of life, and that's what we should especially do. now i'm 26 a female with alot to think about, and really realize what life has to offer.. we just have to reach out and grab it. NEVER let them say you can't do it! I don't believe it! Even bungie jumping and parasailing... do it all ... with safety and faith. write..., marsea
marsea de jesus <mdjcarpediem@hotmail.com>
nj USA -

hi my name is marsea. I have been epileptic since I was 12. The first day of college was one of my worst, I had 8 in one morning ! The doctors said one more and there would be brain damage! Currently, I am taking depokote (2500mg) per day and now I on;y have the seizures 2 and 2 years. However I am a 26 year old female who would like to be more independant but can't, and yes! it's frustrating !!! I understand that! But I will not let this obstacle hinder my life. I slowly am achieving 3 degrees in medicine- one one in biology, another in medical technology, and the last in clinical labortatory science so one day I can open up a diagonostic center for those who are sick too and help those as I have been helped. Please anyone e-mail me it's nice to know that there are people out there who understand. As much as I try our families can only sympathize and care but we can empathize with each other. My other e-mail address is this carpe diem in latin means seize the moments of life we especially have to do that!
marsea de jesus <mdj10396>
nj USA -

Hi, my name is Jeff, and I am a 19 year old TBI survivor. I was injured when I was hit by a car while crossing a busy street 6 years ago. I maintained much of the abilities that i had, and had many obsticles to overcome (some that I still struggle with) I have spent time in hospitals,rehab centers, doctors offices, and aywhere else I could've been placed. Today, I am what many consider to be "walking wounded," and hopefully my experience, or just my support can help you, e-mail me.( that's what im here for)
Jeffrey Steenbergh <Cush91297@aol.com>
Warren, MI USA -

Hi there! I am a 23 year old who works full time for a girl with TBI. I just wanted to say that this site is great! I have really enjoyed reading the poems and profiles.Since I have started working with" J" I have found that very few of my friends and family can really understand the dynamics of TBI and just how profoundly it changes the lives of so many people. I know that part of the reason for this is because it's such a slap in the face to mortality. No one seems willing to entertain the thought of brain injury as long as it doesn't happen to them or someone close to them. But the reality is it could happen to anyone at any time. And thats scary. I have become very involved with "J". Some days it is extremely hard to deal with her screaming and refusing and anger towards me. But I can only try really hard to understand the frustration she must feel at not being able to communicate ,and all the demands that are placed on her during her rehabilitation.It's those days that she smiles and lets me hug her or even acknowledges me with a little giggle that makes it all worthwhile.I pray that she continues to make progress although I know she faces tremendous obstacles. I read "Understand my Anger", by Debbie Wilson and it reminded me of work. I can image thats what "J" would say if she could only talk to me. I have such respect for the other caregivers and those who struggle with TBI. Bless you all.
T.L.R <Lucy207@Juno.com>
CT USA -

I have had seizures for 10 years now as a result of a stroke of unknown cause. Although I have had several gran mal seizures, and numerous MRI's showing the damage to my brain, my newest doctor claims I now only suffer from psychological seizures! I find myself confused and angry. Could this be true? Has ANYONE had a situation even remotely close to this? I'd love to hear of your experiences & perhaps share some of my own.
Anne Jende <jjende@Yahoo.com>
DePere, WI USA -

Hey guys. I'm writing to tell you that I had seizures for 17 years. I had surgery done. If you need any advice or anything just e-mail me or write to me at Ann Goff, P.O. Box 597, Twin City, GA 30471. I wish you all the best of luck.
Ann Goff <tazdevil717@yahoo.com>
Twin City, ga USA -

Debbie, have read either stories of yours or Poetry? Thinking it was poetry...but have a tbi myself so can not be sure. Ran into your story about the 4 guys and their different perspectives on what they saw and felt...enjoyed it. Found it while surfing in a search engine....Will try to access more of your site from here if I can figure out which direction to go...lol...thanks for all you do..
Toby Edmondson <tedmond@netins.net>
LaPorte City, IA USA -

I have recently been diagnosed with temporal lobe epilepsy after numerous tests and hospitalizations. I also have a rare disease called "MCTD" or Mixed Connective Tissue Disease, as well as I suffer from the many manifestations of the Lupus Anticoagulant/Antiphospholipid Syndrome. Until recently, my seizures were attributed to the Lupus problems I have even calling them Lupus Cerebritis. I was initially placed on two medications: Dilantin and Neurontin and informed to come back in three months to have my Dilantin level checked. In the meantime, I have experienced more frequent episodes of seizures, even recently having cluster seizures. Hopefully, the new doctor I met during a recent hospitalization will be able to better monitor my condition, as he attests to me that he is willing to assist me with this area of my medical care. I am 38 years old with two children and am married to my caregiver. If someone can offer me factual information concerning temporal lobe epilepsy or even give referrals, I would greatly appreciate the input.
Cheryl Johnson <leahcats@aol.com>
Washington, DC USA -

I have a twenty four year brother with a Brain Injury, I'm also his guardian and caregiver. He was fifteen when the three wheeler landed on his head, he was in a coma for 21/2 months and we have lost both of are parents from a heart disease. I am really looking for someone that has gone through the same experience who could get me some information on how to take care of a brother with brain injury and how to kept going on with your own life and not feel so guilty all the time with moving on with out him wanting to try? thanks
Wendy Cunningham <cjh@prolc.com>
Salt Lake City, UT USA -

I have a 12 year old daughter that suffered a TBI in an auto accident 6 years ago. She is having seizures and I would like to find out more information on medications and any thing else that I can to help her more. She has therapy 3x per week and is currently taking medications as an experiment to see what will work. Can any one help with information. Ashley has been in and out of hospitals and sees I can not count the number of doctors. I would love to hear from others that have had these problems and if I can help I would be delighted to do so. Please e-mail me. My prayers are with all this is a great web site.
Brenda Hitchcock <Brennmike@AOL.com>
Tampa, fl USA -

I have a 12 year old daughter that suffered a TBI in an auto accident 6 years ago. She is having seizures and I would like to find out more information on medications and any thing else that I can to help her more. She has therapy 3x per week and is currently taking medications as an experiment to see what will work. Can you help? Thanks
Brenda Hitchcock <Brennmike@AOL.com>
Tampa, fl USA -

I suffered from seizures for 17 years, I had brain surgery done. Finally, my dreams are coming true. If you need any help or want to know the doctor I went to just e-mail me and leave your address. I can't e-mail back, but I will write you.
Ann Goff <tazdevil712@yahoo.com>
Twin City, GA USA -

I suffered from seizures for 17 years, I had brain surgery done. Finally, my dreams are coming true. If you need any help or want to know the doctor I went to just e-mail me and leave your address. I can't e-mail back, but I will write you.
Ann Goff <tazdevil712@yahoo.com>
Twin City, GA USA -

I suffered from seizures for 17 years, I had brain surgery done. Finally, my dreams are coming true. If you need any help or want to know the doctor I went to just e-mail me and leave your address. I can't e-mail back, but I will write you.
Ann Goff <tazdevil712@yahoo.com>
Swainsboro, GA USA -

You can e-mail me, but I can't E-Mail back. If you leave your address, I will write back. I promise
Ann Goff <tazdevil712@yahoo.com>
Swainsboro, GA USA -

Hi. I have had epilepsy for 6 years now. I am now just turning 21. I was in an accident when I was eight years old. I was hit by a truck while i was riding my bike. Of course i never wore a helmit and that was back in early 80's when this had happened. Well when we, me and my family, had found out that I had epilepsy was when I was 15 years old. We didn't know what was going on but I was rushed to a hospital and was told quickly what I had developed. I have been put on so many different medication that I ending quiting my sinor year at high school so I could find out what type of seizures I was having. My self and my family had found out by some very special doctors in Philly hospital that I had epileptic and non-epileptic seizures. But being on the right medication, for two year now, I was able to get my GED and go one to college and I'm glad to say will soon graduating from college. I want to thank you all for your encouragement on helping me through the bad time and you all showed me how to look up at things instead of being down. I specially thank the epilepsy staff at Graduate Hopsital in Philladelpha for their great care that had given to me. I would like to become a penpale with an other that is special as I am. Also I thank God for every day he is letting me live and to educate people about epilepsy as much as i can. I would love for you all to give a smile to another each day to remind your self that it's good to be someone special in your very own special way!!!!
Melissa S. Ellison <Spanky1977@aol.com>
trooper, pa USA -

Hello! I would first like to say that I love this page! I am a 26yr old that has been dealing with epilepsy since I was 17. I was doing pretty good until this past week, I had a seizure on Wed. and I have no explanation for it, usually I know why I have one,I have done something I am not suppose to do, but this one I don't know why. I did have a long talk with the pharmacist and she said that if you take Dilantin; which I do, you should not take Excedrin or Asprin or Ibuprofin for a headache or what ails you. If anyone has ever heard this I would really like to hear from you or if you know of any other over the counter drug that I should not take PLEASE let me know. My husband wants a list of drugs that I can not take and any help from anyone who takes Dilantin would be greatly appreciated!!!! Keep up the great work on this page, I visit it almost everyday.
Venessa Fennell <v_fennell@hotmail.com>
Waynesville, Mo USA -

I am currently enrolled in a online class through UC LA extension. As part of an assignment on defining physical and health impairments I have been directed to your site. I had seizures as an infant, cause unknown. My parents always said they thought it was due to my full breech entry into this world. I have had no more seizures since I was 22 months old. I wish to thank you for allowing me to peek into your lives for a few minutes. Thanks also for the wonderful information that I received.
Kathryn Jones <kdkajones@aol.com>
Duarte, CA USA -

Articles I have read was very informational, It had help in my studies and understanding about head traumas and significant effects and symptoms. Furthermore, it widen my approach about susch disease.
Cyd Yap <CDORIA8302@aol.com>
USA -

Iam almost positive Iam a membor but it got deleted off!!!
Lynne <D.Dugan 7665 @aol.com>
Mpls. Mpls. , Mn. USA -

I am the mother of a 9 week old son who has a seizure disorder as a result of a hypoxic brain injury during labor or delivery. Our longterm picture is unclear. As we hope and pray that everything works out for our son, our prayers are always with those who are experiencing the pain, fear and uncertainty of a brain injury. I would welcome any hopeful information or words of wisdom. Heidi
Heidi <H IDRODE@aol.com>
Kenduskeag, ME USA -

Hi i am 25 years old and i have have epilepsy sence i was 18mo old and i had no problems untill june of 1998 and sence then i have not had anymore and i feel great and i am on medicen now for the rest of my life and best of all i can drive .
Lenny <newseries7@aol.com >
naples , fl USA -

Info on hydrocephalis
Melanie Osborne <mosborne@kaypublishing.com>
Oakville, ON Canada -

I am 18 years old. I have had epilepsy since I was 4.I have always felt abnormal and a burden to loved ones. My greatest fear, is to find out Im pregnent one day, and wonder if my child will be retaded or even die, because of something, I cant control. I just pray, that one day there will be a cure for epilepsy, and that it will be as easy as treating the flu. Love,BETH
bethany beverly
columbia, sc USA -

I had Epilepsy seizures from age 4 - 21. I had to take 3200 mg of medicine per day. I went to the doctor and tests were taken. I was told that I had a choice of continuing with the medicine and live 3-5 more years or have brain surgery. I told my mom and dad I wanted to have the brain surgery done. My life was miserable because I couldn't drive or any normal teen stuff. Mom and Dad agreed with me to have the surgery done. I had brain surgery on June 27, 1995 and I haven't had a seizure since. I finally got my drivers license, a car, and currently in college. If you want to know the doctor name who did surgery, then E-mail me and I will send you any information you need. I learned one thing--never give up fighting.
Ann Goff <tazdevil712@yahoo.com>
Twin City, GA USA -

hi,i'm 32 yrs. old & i've had epilepsy since i was 15. it has been really rough at times. i pray to god everynight that my life will be better. i have two kids & i pray that they don't inherit this from me. i am on dilantin ,but i feel like i'm not normal. i had to give up cheering in highschool & that hurt alot. maybe one day i can do all the things everybody else does. thank you for listening. kristina
kristina
jacsonville, fl USA -

I AM A 22 YEAR OLD FEMALE AND I HAVE HAD EPILEPSY SINCE I WAS 8 MONTHS OLD I HAVE BEEN ON EVERY MEDICATION THAT THERE IS TO CONTROL SEIZURES. AND NONE OF THEM SEEM TO BE WORKING FOR ME. AND MY DOCTORS TOLD ME THAT I AM GONNA NEED BRAIN SURGERY TO CONTROL MY SEIZURES.
TRACY LAUBACH <BOOPBABEDO>
EASTON, PA USA -

My son at the age of 16 was in a car accident and suffered a brain injury. Josh was in a coma and the doctors said he wouldn't make it. We never would agree with that and we took on the battle for his life and his recovery. Never give up. It is a tough road but it can be traveled. Josh is now 22 years old and has recovered beyond or hopes and dreams. Stand tough and trust in the Lord; He is our hope and our victory.
Gary Tucker <GTucker759@aol.com>
Blackwell, OK USA -

I am a 36 year old male in 1986 I had Brain surgury I was diagnosed with hydrocephalus in the right Ventrical. I've had seisures ever since and I have been on most medications for the disorder. I have had a new shunt put in one year later. I now of a new procedure I might have done in a month. After thirteen operations and 12 years after the first surgery Im still going thanks to prayer.
Doug Becher <mbe 267 4833@aol.com>
El Paso, TX USA -

I am a graduate psychology student starting a dissertation on the impact of TBI on marriages. I am searching now to see if there is enough interest in this topic. Please feel free to send me input on this, if it applies to you. It would be greatly appreciated. Thanks, Lisa
Lisa Altstadt <AltstadtL.aol.com>
IL USA -

I am a 31 year old daughter of a mother who has epilepsy due to a chilhood brain injury, my mom has been through the whole realm of drugs fron dilantin to phenabarb, tegretol mysolene and nuerontin. Since my father just passed away and I am unable to care for her due to her seizures she is now at the age of 55 in a nursing center and is very depressed, any advice out there? Be well.
Sheryl Van Horn <Sheryl 5192@aol.com>
Yuma , Az USA -

I found the poem on seizures very inspiring. I myself have had seizures, but luckly they went away while I was young. Not only has this specific poem touched me but the others have as well. Thanks
Jean Rothe
Sarasota, fl USA -

You poem on the need of Hope is very vivid. Keep it up!
Cliff <rummenie@greynet.net>
Meaford, Ont Canada -

i love this page i have had seizures since i was 8 months old and have been on tegretol, neurontin, dilantin and was on an experimental drug for about 3 months but my seizures got worse i almose went through a window when i had seizures and there might be one maybe two more medications out there the doctors can try before brain surgery i am currently on tegretol XR 400 and 200 mg this page has helped me so much
TRACY LAUBACH <Boopbabedo>
Easton, Pa USA -

I AM A THREE YEAR SURVIVOR OF A RUPTURED BRAIN ANEURYSM. I WOULD LOVE TO CORRESPOND WITH SOMEONE WHO HAS APPROXIMATELY THE SAME NUMBER OF YEARS UNDER THEIR BELT.
ROBYN GOODWIN <ROBYN.K.GOODWIN-1@OU.EDU>
NORMAN, OK USA -

My husband suffered a TBI 9 months ago in a motorcycle accident, and remains in a vegetative state. I would like to hear from anyone who understands what it is like to go through this
Raquel Adams <quelgal@redrock.net>
St. George, Ut USA -

I was happy to see this page. I was diagonosed back in '87 as having partial complex seizures, and my neurologist has traced it back to when I had meningitis and encephalitis at once, at the age of two. I have been on Felbetol, Tegretol, and am currently on Dilantin. I have recently felt what it is like to be discriminated against, due to my epilepsy. I was working in a restaurant, bussing tables, and was discharged due to the fact that I could not pay to get an MRI performed since I do not have any medical insurance. The company doctor who saw me even threatened to report me to DMV. I did think about filing a law suit, since I had been honest with the company from the beginning, but I decided to go on with my life. Now at 23, I realize how difficult it is to be dependent on medication, but God-willing one day I won't need to take 400mg of Dilantin every night. Thank you for this educational site. My prayers and thoughts are with you all.
Ana <ANA1210@AOL.COM>
San Diego, CA USA -

My aunty was sent home from er three times and told to take an aspirin for her headache. Just by luck, a doctor who knew what he was doing looked into the room where she was lying after finally being admitted to hospital and said "Get this woman into intensive care, she is having a brain haemorrhage !". and even though he saved her life she ended up living in a home for the impaired and if the "So called" doctors had picked her condition up in time she would be the same old aunty we used to know. So let`s make sure the trainee doctors know what to look for!
max <mjchase@bigpond.com.au>
nowra, nsw australia -

I am a survivor of TBI and epilepsy. I am willing to talk to anyone about my injuries. I have been attending a support group for my TBI. I am a college student and beginning to deal with people who do not understand who I am.
Kellan Crowley <Kellan@imcnet.net>
adams, ny USA -

I was in my senior year of college when I was involved in a terrible car accident causing my TBI. I was in a coma for 3 months in the hospital for 5, in rehab for 6 months and back at college 2 years after the accident. I've been back for a year and I have access to this web site and I'm writing a paper on TBI, so I am eager for any help anyone can give me. Thanks, Cathy
Cathy Hammond <hammondc@slu.edu>
St. Louis, MO USA -

Thank-you, sometimes it feels like there are so few people that i can relate to anymore, I feel alone. I worked as a mental health case manager when i was physically assaulted by one of my clients. That was almost two years ago and I still cannot seem to get it out of my mind. That day changed my life, as now I too have a seizure disorder. seems very ironic as the person who assaulted me does also. It's been along hard road through medicine. Somedays I want to dump it all into the toilet and get my life back. Funny though, it doesn't work that way. I used to think that I had a chaotic life before, but now just waking up promotes chaos. I've become the post-it spokes person for Peoria, without them i'm sure I'd be LOST. I am setting inthe library of the college that I'm now going to, doing a research paper on Epilepsy. I figured it might be a good idea to let people know that when I stare into space, pick my clothes apart, or even take off (not for awhile!!!!!!!), I am NOT drunk!!!!!!!! I have read so many other GUEST BOOK entries THANK-YOU.......today I do not feel alone.
Marty Pratt
, Il USA -

On 7-1-98 it will be 10 years since my 2nd TBI only because doctors could not diagnose that I had developed Epilepsy from my 1st TBI which happened on 5-1-79. The period in between the two TBIs I took over 30,000 Complex Partial Seizures due to the fact that not 1 doctor ever asked if I ever had a Head Injury when I went to these people because I was Hallucinating and Dry Heiving for almost a decade. I was 21 in 1979 and even today I continue to have problems from both TBIs and all the injurys that were a result of them, never think a doctor has all the answers, I never will.
Blaine A Stanziana <Bstanziana@aol.com>
Pittsburgh, PA USA -

I am the spouse of a TBI survivor. His car wreck left 2 people dead and he was in a total coma for 4 months. He was then in a persistant vegetative state for 4 more months. The doctors gave us very little hope of his survival much less recovery. I was asked to donate his organs. He spent 4 years in rehab. Now almost 5 years later he has returned home, and is working part time. His injury has left him with a loss of balance and difficulty with speech. However, progress continues 5 years post injury. Just yesterday he was able to take 10 steps by himself without his walker or cane or using me for balance. Doctors aren't always right!! For any other spouses who need an ear who really knows what its like email me. For any survivors who want to talk to a positive, inspiring survivor, email my husband at greenthumb@wwd.net. Keep up all the positive words.
Tracy Childers <Blossom31@imstressed.com>
Ashland, KY USA -

Well unlike many people on here i don't have any diseases. etc but i was inspired by the poems on here and would love if anyone who would want to share poetry( I write poetry)to e-mail me to read their work Kirsty
Kirsty <franet@ihug.co.nz>
Hamilton, New zealand -

Poetic Awakening, a Book written by a "Survivor" for "Survivors" has just been introduced to the TBI Community; all who read it are deeply inspired. To receive your copy email request for your order form to mtnbliss@yahoo.com Be sure to include a current address to where your order form can be sent. You will receive order form within 3-5 days following receipt of your e-mail. Don't miss out on a sensationally inspiring book written by a "Survivor" for "Survivors."
John Snyder <mtnbliss@yahoo.com>
USA -

Hi Deb, I love you way with words. I think we are walk down the same paths. I have been diagnosed has having Chair Malformation Complicated Migrains, hypoglycemic, hypochodriac,Anxious and now maybe it is sometype of seizure disorder. But, still wants me to see a psychiatrist. He originally didn't believe I had drop attacks. Then I told him I had people who wittnessed them. So, He had to at least do some sort of work up. But, I could tell I really pissed him off. Doctors don't like to admit to being wrong. I tend to let them know that they are wrong all the time. I don't mind stepping on their toes once in awhile. Keep up the great writings. Love your poetry. Sincerely, Ann Reitz:)
Ann Reitz <write@2xtreme.net>
Sacramento, CA USA -

Deb, Dropped in to pick up some valuable words. Thank you regards Wizard of OZ.
John Gray <jrgray@iinet.net.au>
Perth, WA Australia -

Wonderful site, good to know that there are others out there who have learned to overcome the hardships of Brain Traumas and Aneurysms. My Dear husband Rick, Has had three Aneurysms in the past 8 years. Two which have ruptured and one which was caught before it ruptured. Our lifes have been certainly blessed. He is still among us and doing well! And boy, do we ever love him more.....These kind of things make you seize the moment and take advantage of every memory! Best wishes to everyone! Marla
Marla Young <rustic@favorites.com>
Brigham City, Ut USA -

I just love visiting this site. I am 29 years old and have known I have TLE for 1.5 years now. I would love to chat with others that have epilepsy to share stories and suggestions. I also write poetry and fiction, and if there are others interested in sharing writings, feel free to email! Looking forward to meeting new people. Debbie, drop me a line, I haven't heard from you in a while. :)
Dawn <randi98@worldnet.att.net>
FL USA -

Please increase the print size and change your print/ background combination, it's VERY hard to read. Didn't see any info on the VNS. Pop on into my VNS page and see if it's worth a link. http://www.frontiernet.net/~dnaess/pages/vns/vns.html
David A. Naess <dnaess@bigfoot.com>
Rochester, NY USA -

Just a Speech-Language Pathology student stopping to check out the page...Good luck to you all----you are in my prayers. I hope I can make a difference some day.
Carrie Gilmore Harrell <randc@dnet.net>
Waynesville, NC USA -

I HAVE TRULY ENJOYED THE POEMS, I WRITE POEMS MYSELF,IT MAKES ME WONDER IF ALL PEOPLE WITH EPILEPSEY HAVE THIS GIFT!!!!!!!! THANKS FOR THE UPLIFT, CRYSTAL EDGE
CRYSTAL EDGE <HOMEGIRL417@PRODIGYNET.COM>
MOORE, S.C. USA -

My 8 yr old son is recovering from viral encephalitis and currently has partial complex seizures. I pray that the good that can come from this is that we can educate the public about epilepsy. Any other parent having gone through encephalitis please e-mail me about your situation. Thank you for this web pag....
Lou Ann Lake <LOULAKE05@aol.com>
CA USA -

Today is my anniversary of my stroke.....5 years ago!!!!!!!! Boy my life has done a complete about face...but, I'm allive...Now I'm the new, improved edition!. I'm asphasic and have some debilitating features...like the inability to write legibly with my right hand. If anyone out there can help me..........I'm about to persue a couple of disability issues with the ADA EEOC, regarding my former employer. Has anyone been in that position or has known someone who has.....thanks for your help!
donna thomas <dthomas2@frontiernet.net>
USA -

i thank you for your web page an poems it is a cood place to come when i need just that little help in 1994 may i had a car accidient that resulted in a t bi on june of 96 i had my frist grand mal sizure now i am on depcode and my doc seams to think that i may be sizure free by years end i feel he is a dreamer i just reaed you poem i tried i am experinceincing the same things expecp i am a singal male with no kids thanks agian chris
chris dudgeon <cdudgeon@aol.com>
cheaspeake, va USA -

I was recently diagnose with partial complex seizures. For months doctors told me that nothing was wrong, that I had the flu. One doctor had the nerve to ask me if my symtoms went a way when I drank a beer. Finally one doctor diagnosed me and put me on medicine.
Christie <christie@plnet.net>
USA -

Interested in anything that has to do with women and their peculiar problems related to Life and epilepsy (hormones, panic attacks, harder to control siezures after 40 y.o., early menopause?, concerns with effective mothering..... THanks, I'm glad I found your web-page on the internet!!!
Robin MacLeod-Jones <bruceandrobin@juno.com>
L.A., CA USA -

I recently met someone on-line who has epilepsy. I wanted to know more about it and I am glad I found your site. God bless you and everyone who has written in sharing their experiences. I leave your site with a fuller heart *smile*, and an enriched mind. Thank you again.
Catherine <catherinew_@hotmail.com>
CA USA -

incrdible! i admire alll of the hard work that has gone into this effort. i have wanted to do something similar in a non-computerized format but didin't know where to begin, you have given me much needed direction. my 21 yr old daughter was in an accident nov 96 and is in process of surviving from a tbi. thank you so much!
stacia haynes <mmarsh46@juno.com>
denver, co USA -

I have a 5yr old daughter that has epilepsy.. At first i thought she was dieing but people explained to me what was going on..and now i found this web site WOW it's realy tought me alot .keep up the good work
Penny Klee <PKlee71128@aol . com>
Jacobsburg, Oh USA -

1 April 1982 woke up out of my sleep going through a partial motor seizure. Admitted to the hospital and under went all kinds of test with negative results on why I had a seizure. Currently I still don't know why I have them. Medication: Dilantin. Glad to have found this site. I wish I was free of these seizures but GOD has made a way for my family and I. Good Luck to all of this family.
Mr. P <TPuryearii@aol.com>
Fayetteville, NC USA -

1 April 1982 woke up out of my sleep going through a partial motor seizure. Admitted to the hospital and under went all kinds of test with negative results on why I had a seizure. Currently I still don't know why I have them. Medication: Dilantin. Glad to have found this site. I wish I was free of these seizures but GOD has made a way for my family and I. Good Luck to all of this family.
Mr. P <TPuryearii@aol.com>
Fayetteville, NC USA -

i have had epilepsy since i was 8 months old and the doctors told me htat i have the type of seizures that are very hard to control with medications i have been on every medicine that is out there and i might need brain surgery the doctors are gonna try and experimental drug on me and if it does not work then i will need the surgery by Christmas
TRACY L. LAUBACH <Boopbabedo>
Easton, PA USA -

Thanks for this great information, and also thanks for that program i can download
Fabián Arocena <farocena@chasque.apc.org>
Montevideo, Uruguay -

thanks for all the great information. does anybody have experience with adult herpes encephalitis recovery? our mom has been ill for 4 weeks and the doctors have no prognosis to offer. i'd love to talk.
Stephanie <ssrogala@aol.com>
Phoenix, AZ USA -

Hi, just found your web site while looking for HELP !!!!!!!! i don't have time right now to go thru all the info to search what i'm looking for. My son jason has tbi & seizures from brain surgery 17 yrs ago. he's going down hill FAST and the drs can't give me any help on what's going on. the reason they can't is because they say that people like my son don't usually live that long, so they don't have the info to go by. can any one tell me more about "todds paralyses " or where i can go to find out more ? thanks !!!!
Rose white <rwhite8168@aol.com>
culdesac, Idaho USA -

WOW! Debbie! you have made a remarkable recovery. WOW to Harley as well - I am a big dog fan, but i never realized they could sense seizures before they start, thats amazing. Its wonderful that your best friend gets to help you so much and be your guardian angel. I wish you luck in finding a medication that is successful.
Beth <dawg@sinbad.net>
anchorage, ak USA -

I WROTE IN HERE ON MARCH 19, 1998 AND SPOKE OF HOW I WORK WITH PEOPLE WHO HAVE DISABILITIES AND HOW ALL THE POEMS HELP US AS CAREGIVERS TO UNDERSTAND WHAT THE PEOPLE WE TAKE CARE OF ARE GOING THROUGH AND I REQUESTED THAT ANYONE WHO WANTED TO COULD E-MAIL ME THEIR POEMS AND I RECIEVED SOME REAL HELPFUL STORIES AND POEMS AND THEN I MOVED SO I AM WRITING AGAIN TO GIVE MY NEW E-MAIL ADDRESS IT IS GRUMPY@GJ.NET IT USE TO BE DOPEY35AK@AOL.COM SO PLEASE EMAIL ME WITH YOUR POEMS AND STORIES.. I ALSO HAVE A FRIEND WHO'S SON WAS INJURED IN A 4WHEELER ACCIDENT AND HAS T.B.I AND IS REALLY HAVE A ROUGH TIME WITH HIS INJURY AND FAMILY MEMBERS WHO DONT UNDERSTAND AND THINK HE IS JUST PUTTING ON A SHOW. SO IF YOU CAN E-MAIL ME ANYTHING THAT CAN HELP HER COPE AND ASSIST HER SON I WILL PASS THAT ON TO HER SHE IS ALMOST AT THE END OF HER ROPE WITH ALL THE RED TAPE THAT GOES ALONE WITH T.B.I.. WELL THANKS AGAIN AND I LOVE READING ALL YOUR STORIES SANDY.
SANDY <GRUMPY@GJ.NET>
GRAND JUNCTION, CO USA -

I am a TBI Survivor from a car accident Dec. 16/94 which also broke C2 in my neck, pelvis, etc. My MRI's show definite Left Temporol Lobe damage and EEG shows mini-seizures like epilepsy for which I have begun taking Tegretol and I visited your site to get more information about that drug. It was really informative for me and I thank you for your making this Web Page available to me.
Linda Hunt <learn@tbichat.org>
Wasaga Beach, ON CANADA -

I had brain surgery two years ago for a cavernous angioma. I have not had a seizure since then but I want to be a neurologist and I am doing a paper on epilepsy. This site was very helpful. Best of luck to those who aren't as lucky as myself. My heart goes out to you.
Adrienne
Williamsville, NY USA -

i really liked it . im a person with epilepsy, and it was very educational.
leah robinson
Battle Creek, MI USA -

Hi, my boyfriend was in a skiing accident the 3rd week of Feb. He is still semi-comatose. I am so angry and frustrated. It would be nice to hear of someone that survived a TBI and give me some hope. Thanks.
Jennifer Reimer <jeeju@netutah.net>
Logan, UT USA -

HELLO HELLO HELLO HELLO HELLO I Bet everybody here won't remember my name by tonight right? Well I hope you will remember what I am about to write. I am inetrning at NRRF National Rehabilitation & Rediscovery Foundation Inc., We go into clients homes and help them in areas of their lives they want help in. Until now I had no idea this population exsisted. My heart goes out to you. But also my most sincere hopes that you will challenge yourselfs to rediscover who you were before your injury. IF YOU BELIEVE YOU CAN DO IT!!!!!!!!! If anyone has been working with a case manager or lifeskills trainer please write back and tell the wonderful or not so wonderful experiences you have been through with them. I am interested in this field and would love constructive advice from the people I want to help!!!!!!! Thanks!!!!!
Loree Bradee
Fairfax, VVA USA -

Dear Debbie: I am writing to you to let you know that I am still alive and trying to get on with my life it's hard but I am trying and I also am trying to get a support group started at our local VA Hospital but I need some information on how to go about doing it but the Epilepsy foundtion is no good so I have given up on asking them for help so I am asking you for help in where I can get some information on this. My mailing address is as follows Dennis Moody, 3245 W. River Road, Sidney, Maine 04330 thanks for being a friend to talk to Love Dennis
Dennis Moody <BMoody3496@aol.com>
Sidney, Me. USA -

I was diagnosed with a benign brain tumor almost 8 years ago. Had a head injury as a child and was on Phenobarbital for a couple of years. Noticed that I was having daydreaming episodes (partial seizures) for a couple of years. My neurologist put me on Tegretol and Dilantin but I had side effects from the. I am now on Neurontin and Lactimal but they still have not subsided. Had an abnormal EEG and have a referral to a neurosurgeon. I have tingling sensations in my scalp sometimes before a seizure. Does anyone else experience these symptoms. I would like to hear from anyone particularly with petit mal seizures.
Jeanne Abernathy <PridyKidy@AOL.com>
Saugus, MA USA -

I'ved had epilepsy now for 55 years. I wish to thank all of you for all the information i have resived from my internet God Bless All Of You
barbara keisman
port orchard, wa USA -

WELL I SURVIVED MY FIRST TORNADO ALONE BEING DISABLED. HOW DID EYERY BODY ELSE HANDLE IT?
LYNNE DUGAN <DDUGAN 7665@AOL.COM.>
MPLS., MN, USA -

I just wanted to tell you how much I loved your poems.. I have had epilepsy for 15 years and have tried to have brain surgery but was unable to because my seizures are so spread out so I got the Vegus Nerve Stimulator and it works really well.. I am not Seizure free but I am at least 50% better and I would encourage anyone to have this implant.. it is very helpful.. Again.. thank you for the poems.. they helped me alot..God Bless!! Please E-Mail me if you have any interesting imformation!
Pamela Foster <Bugsy36@city-online.com>
Columbia, SC USA - Content-type: text/plain Thu May 14 04:58:01 EDT 1998

IF YOU HAVEN'T READ THE POEM CALLED PROM, YOU SHOULD.
MEGHAN O'LEARY <BASILSCOTT7@HOTMAIL.COM>
WALDEN, NY USA - Content-type: text/plain Wed May 13 20:13:12 EDT 1998

I am a brain injured epileptic . Iwould appreciate mail from you if your in the same boat!
LYNNE DUGAN <DDUGAN7665@AOLCOM>
MPLS., MN. USA - Content-type: text/plain Wed May 13 19:13:24 EDT 1998

I am so grateful to find this site. I had a ruptured brain aneurysm in 1991,and miraculously survived without damage. However, there have been many issues I have not dealt with -- most notably feelings of grief, and I feel a great need to talk with others about these things. I would also like to find online support groups -- if anyone can help with that information, it would be greatly appreciated. So glad you're here...
Carol Garland <SybilSadie@aol.com>
Black Mountain, NC USA - Content-type: text/plain Wed May 13 18:34:48 EDT 1998

I just HATE it when people patronize me, don't you?
David A. Naess <dnaess@bigfoot.com>
Rochester, NY USA - Content-type: text/plain Tue May 12 11:55:49 EDT 1998

Hi, I just wanted to comment on how brave I think you all for being able to put up with this desease. Be strong and keep up the good work!!
Have None
Willow Grove, PA USA - Content-type: text/plain Sun May 10 17:01:35 EDT 1998

HI I JUST FOUND THIS PAGE WILL BOOKMARK IT FOR MY WHO IS HAVING ALOT SEIZURES
CHERRY COTTLE <ccottle@mars.net>
chesapeake, va USA - Content-type: text/plain Sat May 9 08:47:21 EDT 1998

great to see your page 1993 i had a severe head injury about 12mnths i had agrand mahl? seisure at present i am clinically depressed i have tinnitus no taste no smell and no sexual interest in my wife of 25yrs but life goes on i look forward to it getting back to where it was before my injury although its not easy to remember that in the detail i would like.take it easy pete
peter davidson <davidson@globe.co.nz>
new zealand - Content-type: text/plain Thu May 7 20:19:59 EDT 1998

Hey. I am not epileptic, but I do understand what it feels like to be coping with a disorder which not everybody else has. I sympathize with all of you epileptics, for epilepsy is far more tormenting that many other diseases. I wish all of you epileptics good luck.
Meera
CA USA - Content-type: text/plain Thu May 7 00:48:23 EDT 1998

I am an epileptic. I have been since being wounded while in the Army during the Vietnam conflic (war). Now I am nearly 50 years old and still having seizures. On the average, I have 2 (sometimes 3) seizures every month. I'm on medication, and I know that it helps. It just doesn't stop them. Many times I am frustrated and often depressed. Still, I feel lucky. I've seen so many far worse than I. Not being able to drive is probably the worst for me. I live out in the country--5 miles from town. My only means of travel is on foot or bicycle. In the winter, I am forced to stay put. My wife drives, but she also works. Sometimes, though she says that she will take me where I want to go, she is very tired after work, and I feel guilty in asking her to drive me somewhere, especially when it is just to get out. I am a graduate from college. My plan was to be a teacher, but that was not to be. I would like to find others like myself. I don't want to gripe, because I really have nothing to gripe about. I would just like to talk with others like me.
George <gfield@skyenet.net>
Knox, IN USA - Content-type: text/plain Wed May 6 16:24:39 EDT 1998

I just read the messages. I hope those of you that have little hope and feel all alone realize that there are somany people that have it worse. There are children who have to face this everyday. I'm glad I didn't get encephelitis and epilipsy till I was in high school but it was still hard. I thank God everyday I have with my husband and two children. I probably should have been died years ago. Send me a e mail I would love to hear from anyone.
Kathy Bittner <rkpsbitt@daves-world.net>
Fairbury, IL USA - Content-type: text/plain Tue May 5 01:50:08 EDT 1998

I am 22 years old and have had seizures since I was in the 7th grade. When I first found out what it was and what actually happens I wanted to die. That is not a joke. I didn't understand it. I didn't remember anything aboout the seizures. The only thing I knew was what I was told happened. I have had a total of 10 seizures in my life so far but that still doesn't take away all the feelings of being different from everyone else. I felt like I was all alone and that I was the only one that had this. When I was a junior in high school the doctors wanted to try and take me off the medicine and see if I had outgrown them. I was so excited at the thought of not having them anymore. I went for 2 1/2-3 years without one. I went to Six Flags with a friend of mine and while in line for The Roaring Rapids I had a seizure. I woke up in a room with my friend on one side and a park nurse on the other side. I had no idea why I was there. I asked what happened and they told me I had a seizure. I started crying because it was at that moment that I realized I would have them until the day I die. The doctors have done every test there is to do and they found NOTHING!! There was no medical reason as to why I had the seizures. I have not had any brain trauma,it's not in the family, and there was no evidence of anything being wrong with my brain from the tessts that they did.Therefore i have these seizures for a reason that I,my family,husband,and doctors don't know why. The only thing I know is that it will be with me until I die. I found this site and read most of the stories and to all of you I wish you all the luck and happiness in the world. May God Bless All Of You. Just in case anyone is wondering what kind of seizures I had-here's the list. Abscence,Partial,ComplexPartial,Tonic-Clonic and there are some other things that have happened but we don't know why .For a long time I thought I was the only one with Epilepsy-it feels good to know that their are people who understand me when I talk about weird feelings. Thank you to all the people who understand and have listened...Rebecca Miller
Rebecca Miller <gmalone@wf.quik.com>
wichita Falls , Texas USA - Content-type: text/plain Mon May 4 19:17:34 EDT 1998

At age sixteen I suffered a TBI. It not only changed me and my out look on life but it also changed my life. Now I'm nineteen years old and still trying to deal with the pain I suffered almost four years ago. I never realized how a serious auto accident can change someone's life forever.
Melissa <hartmel@gte.net>
Emmaus, Pa USA - Content-type: text/plain Sun May 3 15:22:55 EDT 1998

Well its 19 yrs ago today, 5-1-79 that and Industrial accident changed my life forever with a Head Injury. I hallucinated and Dry Heived for the next 10 yrs because doctors could not diagnose that I had developed Epilepsy. I took over 30,000 undiagnosed Complex Partial Seizures which resulted with a 2nd Head Injury due to taking a Grand-mal seizure,this Head Injury was worse than the 1st one. I have not worked in 10 yrs due to all the injurys I sustained, all I do is fight with worker comp and social securty, what a life, I was 21 when my living hell began.
Blaine Stanziana <Bstanziana@aol.com>
Pittsburgh, Pa USA - Content-type: text/plain Fri May 1 06:03:12 EDT 1998

Hi I'm David. I am surviving from TBI. Feel free to check out my web site. Thanks and God Bless!!!!!!
David R. <ElToro518@aol.com>
Lynn, MA USA - Content-type: text/plain Wed Apr 29 22:44:57 EDT 1998

my 10 year old son has had episodes of total rage. he will get very frustrated with something and if he can't calm himself down he ends up completly uncontrollable. it uaually takes 10 to 20 minutes to cylce. we use the holding therapy most (mainly to keep him and the house safe). we are seeing a neurologist next week for possible anxiety induced seziures. if anyone has any experience or information we would be greatful.
kelly grannan <BGranite2@AOL.com>
omaha , ne USA - Content-type: text/plain Wed Apr 29 21:50:14 EDT 1998

older sister to Shirley, who had encephalitis at 20,is now 36, still uncontrolled with sever memory lost. considering surgery....scared
s.dee nicholson <sophiadee.aol>
ca USA - Content-type: text/plain Tue Apr 28 13:17:51 EDT 1998

When I was 18, they think I got encephelitis from a mosquito. That was 1966. I had seisures and went into a coma. They didn't know much about epilepsy back then. And when I woke up I couldn't remember anything or anybody for about five years. But I have been lucky because my seisures are almost completely controlled. I can drive and I have two wonderful kids and a great husband. Last year, I had a bad case of anxiety and drepression. I I would hear noices and couldn't hear people talking to me. I told my doctor and thought it had something to do with my hearing but I know it was like an aura. I had two seisures. They tried different medicines and I fought taking more medicine. But I feel so much better now it doesn't matter. I'll have to take the antidepressents the rest of my live. After reading the messages, I feel very fortunate but sometimes I get fustrated and can't remember things. That's just part of my life. I have great friends and they are used to my little problems. If anyone wants to ask me anything or just talk, my e mail is rkpsbitt@davesworld.net I'd love to hear from anybody.
Kathy Bittner <rkpsbitt@davesworld.net>
Fairbury, IL USA - Content-type: text/plain Tue Apr 28 01:36:38 EDT 1998

on 3/8/96 I sustained a brain injury after being hit by a car whilst holidaying in greece.My new life is hard but i am alive.I thought i was the only one until my boyfriend gave me a fabulous book called "Doing up buttons" and introduced me to this site on the internet.Thankyou David.
linda m bull
cooks hill, n.s.w. australia - Content-type: text/plain Mon Apr 27 07:11:08 EDT 1998

I receved a depressed skull fracture 3 subdura and 4 epadura hematomas from a fall from a roof. with resulting brain damage, with 13 fixation plates. "Please lets share information it will help both of us, ok. thanks. Lewis Draney
Lewis Draney <IslandCrow@AOL.COM or ldrany@juno.com>
Ogden, UT USA - Content-type: text/plain Mon Apr 27 02:25:55 EDT 1998

Hi. I'm 25 years old and have had seizures since I was 11. I was put on phenobarbital but it caused an allergic drug reaction. Next I was put on Tegretol and it worked for almost 5 years. Since 1994, I have had lots of problems and every medicine my doctor gives me doesn't seem to work. I have been on Tegretol, Neurontin, Lamictal, Dilantin. Now I'm on Depakote and Tegretol XtendTabs. Finally, I told my doc that it seems fishy that my seizures always happen on the first few days of my menstrual cycle so now he's finally put me on an additional pill to be taken one week before my menstrual cycle begins and through the cycle itself. I'd love to talk to anyone who has seizure problems.
Christina Iwaida <chris72_@hotmail.com>
honolulu, hi USA - Content-type: text/plain Sun Apr 26 03:52:15 EDT 1998

My son, now at the age of three, has had epilepsy since one and half year and we still don´t know what kind of epilepsy his got.
Rolf Sandberg <rolf.sandberg@swipnet.se>
Stockholm, SWEDEN - Content-type: text/plain Sat Apr 25 11:27:01 EDT 1998

I think this page is great. I was looking for a chat room about epilepsy and found this. Reading the stories and comments make me realize I'm not alone. Thanks again. I'll write more after my daughters track meet. kkb
Kathy Bittner <rkpsbitt@davesworld.net>
Fairbury, IL USA - Content-type: text/plain Sat Apr 25 11:21:34 EDT 1998

Hi!. I'm a 14 year old girl. I have gone through many things in my life with famliy and friends. My sister had Down Syndrome and as a result, she needed Open-Heart Surgery. She died the day after. She was only 1. I had to see my best friend go through the same thing and she almost died as well. When I'm felling down and blue I looked at these poems. My favorite was HOPE. When I read this it makes my day go by easier. It gives me something to wake up to. It gives other people something to live for. These poems make a difference in people's lives. I thank you for making a difference in mine.
Karrie R.
Ridgway , P.a. USA - Content-type: text/plain Thu Apr 23 18:25:37 EDT 1998

This is the best site I have visited to date.Thank you so much. I am a 51 year old who suffers with epilepsy from birth.I have been taking Pheonbarb for 45 years now. I also take Depakote(valproate)and phenion. I hav't had a Grand mal attack now for over 2 years. But a have been getting a lot of petie mal's. If anyone wants to e-mail me please feel free to do so. regards BIll. bill@wjhand.globalnet.co.uk 18 April 1998
Bill <bill@wjhand@globalnet.co.uk>
Nr Liverpool, England UK - Content-type: text/plain Sat Apr 18 14:46:02 EDT 1998

My Husband first showed signs of temperal lobe epilepsy when he was about 12 or 13 years old. He tried just about every type of medicine to control it. Finally this year at the age of 44 he decided to have the surgery. he had a lobectomy on April 1st and he seems to be doing fine. He is in a rehab. hospital, but will be getting out within 1 or 2 weeks. It has been a stressful time for us but, now things are looking great!!! If any of you have Had the surgery I would like to hear from you. Thanks, Nancy
Nancy Yates <gyates2213@aol.com>
Maynard, ma USA - Content-type: text/plain Fri Apr 17 15:10:41 EDT 1998

Hi my name is David I'm 33yrs. Surviving from TBI in 94. I'm new @ this computer. But my sister helps me alot. I write my true stories sorry not peoms. She created a Page for myself. So to anyone out there who has a hidden injury and thier families. To please read my True stories and tell me how I'm not alone and that one day I'll be happy in life.... http://www.geocities.com/HotSprings/Spa/7713/ THANK YOU ALL +Bless you all!!!!! see you write soon.. TAKE CARE +Thanks again................
David R. <ElToro518@aol.com>
Lynn, MA USA - Content-type: text/plain Fri Apr 17 12:09:26 EDT 1998

When I was in fith grade, my parents thought I was ignorant to them. They sent me to the doctors. I was diagnosed with Complex Partial Seizures. A few years later problems build again, and the doctor found out I had a tumor. I had a brain surgery. I no longer have Epilepsy. After the surgery they found out I had cancer, and I got radiation therapy. The question, "Why me?" kept bugging me. If God had not given me Epilepsy and the tumor in need of surgery, I would have died in tenth grade from cancer. The cancer was called Ana Plastic Gangly Gleoma Astro Cytoma. I am cured of cancer, too. There is a chance for it to come back, but I'll put that in God's Hands.
Kendra Marshall
Loudon, NH USA - Content-type: text/plain Thu Apr 16 14:13:28 EDT 1998

When I was in fith grade, my parents thought I was ignorant to them. They sent me to the doctors. I was diagnosed with Complex Partial Seizures. A few years later problems build again, and the doctor found out I had a tumor. I had a brain surgery. I no longer have Epilepsy. After the surgery they found out I had cancer, and I got radiation therapy. The question, "Why me?" kept bugging me. If God had not given me Epilepsy and the tumor in need of surgery, I would have died in tenth grade from cancer. The cancer was called Ana Plastic Gangly Gleoma Astro Cytoma. I am cured of cancer, too. There is a chance for it to come back, but I'll put that in God's Hands.
Kendra Marshall
Loudon, NH USA - Content-type: text/plain Thu Apr 16 14:12:40 EDT 1998

I have enjoyed all these poems and all the imformation about TBI & epilepsy. My daughter was beaten by her husband and left with TBI. She has short term memory, doesn't walk well. can't keep her balance. Doesn't talk, she doesn't even realize what happened to her. this was 10 yrs, ago. She had a feew seizures right after her brain surgery but doessn't have any now. I have a grandson who is 15 yrs. old now, has had epilepsy since he was 2 years old. seems like he's never in control, has a lot of seizures. Very hard to handle sometimes. I never realized there were so many people with epilepsy and TBI. I don't feel alone anymore. Keep up the good work you all..
wanda childers <jackc@mychoice.net>
Il. USA - Content-type: text/plain Tue Apr 14 22:05:47 EDT 1998

I am a 22 year old female who has had epilepsy since 8 months old i am facine major brain surgery since the doctors ran out of medications to try on me has anyone had the surgery for epilepsy if so please e-mail me i would appreciate it
TRACY L LAUBACH <boopbabedo>
EASTON, PA USA - Content-type: text/plain Mon Apr 13 19:10:13 EDT 1998

Hello, I am a 43 year old who began having seizures in my mid teens. I had a problem with RH factor incompatablilty, and was not transfused for three days. Needless to say, my brain was damaged. The first time I had a seizure I woke up in an emergency room, looked around me, rang for the nurse and asked what I was doing there! She replied that I had an epileptic seizure in my sleep. I said "No, I don't have epilepsy", to which I was told, you have now. Over twenty years later, in 1992, I had a right temporal lobectomy to control the complex partials that I experienced. Six years later, I still have simple partials, but no longer lose consciuosness. I take a total of 1600 mgm of Tegretol CR, and 1000 mgm of Sabril (vigabatrin) per day. Thanks for the website. I enjoyed it and will return!
Rodney Owens <rodney@sprint.ca>
Victoria, BC Canada - Content-type: text/plain Mon Apr 13 02:28:48 EDT 1998

Dear Sirs, I am diagnozed as a epileptic person from childhood, 4 years old from Malaria from Africa where I was born. on the 6th of December 1970. The causes of my epilepsy are as follows : Stress/emotional upset Lack of interest activity Fatigue Fever/headache Consumption of alcohol/ as well as lots of sugar Hyper activity Heat (Very rarely) Lack of sleep (rarely) Treatment since begining : GARDINAL PHENOBARBITAL EPANUTIN TEGRETOL MALASIN NOW LAMICTAL 3 TIMES A DAY SABRIL 3 TIMES A DAY SIDE EFFECTS OF THEM : CONCENTRATION SLEEPY SENSATION CONFUSION ABSCENCES OF THOUGHTS CORDINATION SLOW IN ANY ACTIVITY / UNDERTAKE I can now/predict in advance when the seizure occurs : i get this cold or electric sensation in my STOMACH, after followed by the seizure. It occurs on the left side and my headache afterwards is on the left side. i take roughly 2-5 hours to recover from my headache. I came back to normal state then. As well, i am left handed. It is possible to have a operation I am told, and overcome all this. I have a private insurance-room by myself. SWISS INSURANCE. My question is : What are the things to consider when i decide to take the operation ? What are the side effects how much does it cost ? What are all the tests i have to take? If I take the operation abroad, will my insurance cover that ? In advance, thank everyone for providing me all the information necessary . Yours sincerely, CHUCRI CANAAN ADRESSE : CHUCRI CANAAN 11. CHEMIN DE CLAIRE-VUE 1213 PETIT-LANCY GENEVA SWITZERLAND TEL : 022. 793.40.39
CANAAN CHUCRI <CHUCK@SUPERNEWS.COM>
GENEVA, CH SWITZERLAND - Content-type: text/plain Sun Apr 12 15:51:50 EDT 1998

I really enjoy reading the poems and stories in here keep it up there wonderful!
Gina R. Ferguson <fergusongina@hotmail.com>
Anchorage, AK USA - Content-type: text/plain Fri Apr 10 17:34:39 EDT 1998

it is good to see that you are still out there
Michelle Wells <chellwells@aol.com>
USA - Content-type: text/plain Wed Apr 8 14:28:04 EDT 1998

I'm 1.5 yrs into my recovery from a TBI and my mind is still getting sharper and my memory continues to recover. I was bludgeoned by a drunk who ran a stop sign and hit me at 40 mph while I was on my Harley. He's going to prison finally after a jury trial and endless appeals. Civil action soon to follow. After reading some of your horror stories, I somehow feel blessed. Especially profound, in my opinion, was the story of a lady who started experiencing seizures 3.5 yrs. post TBI. Time will tell, but to date I have not been victimized in this manner. Best of luck to you all!
Paul Donovan <t0883@msp.psco.com>
Denver, CO USA - Content-type: text/plain Wed Apr 8 13:19:55 EDT 1998

Sorry I forgot I would also Like for people to write to me. about anything that has to due with the brain."Epilepsy" and I don't know alot of other things.
David R. <ElToro518@aol.com>
Lynn, MA USA - Content-type: text/plain Wed Apr 8 11:49:19 EDT 1998

I would like to write to people about not being 'sorry but' not being physically disabled walking around and everyone says that they look fine. But only they know that they have this hiden injury. TBI that is. write soon Thanks.......
David R. <ElToro518@aol.com>
Lynn, MA USA - Content-type: text/plain Wed Apr 8 11:29:35 EDT 1998

I would like to have someone that would write. I have had it for 35 years.
Donna Hornby <bobcat@snet.net>
Waterford, Ct USA - Content-type: text/plain Sun Apr 5 16:03:52 EDT 1998

Survivor of TBI for 43 years. Was left with Epilepsy because of this injury. Epilepsy controlled for 40 years. Am an American who is trying to make life better for the disabled in America as well as other disabled of the World. Recently started doing some writing for Suite101.Com. You can see what I am writing about by going to http://www.suite101.com/ My lisitng is under the Health section under heading of Disability Advocacy If you like what I write about please let me know. Also if you have any suggestions please leave them for me. Thanks, Bruce Robb robb@microbyte.net
William Bruce Robb, Jr. <robb@microbyte.net>
Gilbert, SC USA - Content-type: text/plain Sat Apr 4 10:02:58 EST 1998

Survivor of TBI for 43 years. Was left with Epilepsy because of this injury. Epilepsy controlled for 40 years. Am an American who is trying to make life better for the disabled in America. Recently started doing some writing for Suite101.Com. You can see what I am writing about by going to htt;://www.suite101.com/ My lisitng is under the Health section under heading of Disability Advocacy If you like what I write about please let me know. Also if you have any suggestions please leave them for me. TYhanks, Bruce Robb robb@microbyte.net
William Bruce Robb, Jr. <robb@microbyte.net>
Gilbert, SC USA - Content-type: text/plain Sat Apr 4 09:59:55 EST 1998

This actually is my sister-in-laws, E-Mail address, i am using her computor while visiting. I had a Brain anuersym in 1994, I am doing good and have enjoyed your page.
Ronald Lemke <Goontzhop@prodigy.net>
Jamestown, NY USA - Content-type: text/plain Fri Apr 3 13:11:10 EST 1998

TOOK AFALL IN JUNE 1994 I HAD DEPRESSED COMUTED (MANY CRACKS) SKULL FRACTURE. FOUR MONTHS LATER IHAD SEIZEURES COMPLEX-PARTIAL AND GRAND MALL A TIMES, IT NOT SOMETHING YOU GET USED TO RIGHT AWAY. iF YOUR WIFE STAYS WITH YOU YOU ARE BLESSED, MINE DID NOT I WAS MARRIED FOR 21 YEARS SHE USED THIS AS A WAY OUT. IT MAKES ME FEEL FRAL BAD I HAVE TWO BROTHERS WHO LOVE ME THANK GOD, OR I WOULD BE OUT IN THE COLD. ALL HEAD TRAMA FRIENDS UNITE, WE ARE ONE AND ONE FOR ALL. MY MOTO IS THAT WHICH DOES NOT KILL US MAKES US STRONGER SOME HOW.
LEWIS <ldraney@juno.com >
OGDEN, UT USA - Content-type: text/plain Fri Apr 3 03:09:13 EST 1998

I dont give a shit about your stupid seizures and to write poems about it is ridiculous. Thankyou very much for reading my message
Borbeet
newcastle, mongolia - Content-type: text/plain Thu Apr 2 11:54:47 EST 1998

All of your poems are shit
bobbit horance
darlington, england - Content-type: text/plain Thu Apr 2 11:49:38 EST 1998

I have a 15 yr. old daughter with epilepsy after having encephalitis 5 years ago. She is recovered completely except for a seizure disorder. Since then, though, she has great difficulty learning. But the greatest problem she has is rejection from friends. She once was bright and popular, having loads of friends. But now she absolutely has NO friends, no socialization, and she hungers for it so much. She is in a church youth group, but even there, no one will have any- thing to do with her. They're not mean or anything, just not friendly, and won't talk with her or include her in their con versations, etc. Any suggestions as to how I can get my daughter involved in activities, organizations where she can meet someone she can call a friend? It breaks my heart to see other teens talking, laughing, shopping together, and see my daughter left out. I'd appreciate suggestions.
Brenda Thompson <bthompso@riroe.k12.il.us>
IL USA - Content-type: text/plain Wed Apr 1 12:39:42 EST 1998

Thanks for the great listing of resources. I'm compiling a list of interesting web-sites for nurses in developmental disabilities and will include yours on the list. Thands again.
Karen Peret <Karenperet@aol.com>
MA USA - Content-type: text/plain Tue Mar 31 17:43:16 EST 1998

I fell on my head in June 1994, I died 3 times in life flite from depressed right skull fracture,with 13 fixation plates I had seven hemotomas. I now suffer from aparent sezures and extensive brain damage (Extensive encephlomalacia ) on my right frontal lobe and temprol tip. I cry for nothing it seems, and that seems to go in to some sort of seizure that can porgress at times. I can not seem to come to grips that I am having a brain seizure I just think I am wimping out or something , I can not listion to three people talk at the same time or I become sick and my face gets numb, is there any one like me out there that feels the same way? Thank you for this Web site life has changed, my wife left me, said she could not deal with my changed ways. I am 44 male and I think I am more sensitive now than before. Thank you Again, Shane Draney 5298 S. 500 w. Ogden, Utah 84405
Lewis Draney <I do not know how to use my computer>
Ogden,, ut USA - Content-type: text/plain Mon Mar 30 04:06:09 EST 1998

I fell on my head in June 1994, I died 3 times in life flite from depressed right skull fracture,with 13 fixation plates I had seven hemotomas. I now suffer from aparent sezures and extensive brain damage (Extensive encephlomalacia ) on my right frontal lobe and temprol tip. I cry for nothing it seems, and the seem to go in to some sort of seizure that can porgress,I can not seem to come to grips that I am having a brain seizure I just think I am wimping out or something , I can not listion to three people talk at the same time or I become sick and my face gets numb, is there any one like me out there that feels the same way? Thank you for this Web site life has changed, my wife left me, said she could not deal with my changed ways. I am 44 male and I think I am more sensitive now than before. Thank you Again, Shane Draney 5298 S. 500 w. Ogden, Utah 84405
Lewis Draney <I do not know how to use my computer>
Ogden,, ut USA - Content-type: text/plain Mon Mar 30 04:04:28 EST 1998

I fell on my head in June 1994, I died 3 times in life flite from depressed right skull fracture,with 13 fixation plates I had seven hemotomas. I now suffer from aparent sezures and extensive brain damage (Extensive encephlomalacia ) on my right frontal lobe and temprol tip. I cry for nothing it seems, and the seem to go in to some sort of seizure that can porgress,I can not seem to come to grips that I am having a brain seizure I just think I am wimping out or something , I can not listion to three people talk at the same time or I become sick and my face gets numb, is there any one like me out there that feels the same way? Thank you for this Web site life has changed, my wife left me, said she could not deal withmy changed ways. I am 44 male and I think I am more sensitive now than before. Thank you Again, Shane Draney 5298 S. 500 w. Ogden, Utah 84405
Lewis Draney <I do not know how to use my computer>
Ogden,, ut USA - Content-type: text/plain Mon Mar 30 04:02:34 EST 1998

Hi! My name is Rena' Jones. In October of 1997 my husband, Ronnie Jones had a bad seizure. The doctors put him on Dilatin and found nothing wrong. So, they began weening him off the medicine. Then March 26, 1998 he had another bad seizure. We still know nothing. The doctors said his first one almost put him into a coma. Ronnie lost alot of his memory for about two days, and then everything returned to normal. Well, the second one was almost the same except for he was not going into a coma. He has never had a brain injury and he does not have epilepsy. So, here we are without a clue. I was hoping someone would have an idea. The next step for Ronnie and me to take is to have him checked for a brain tumor. I'm praying to God that this is not the case. The E-mail address I gave is his mothers. Thanks, Rena' Jones from Henderson,Ky.
Shannon Rena' Jones <jonesy@henderson.net.>
Henderson, Kentucky USA - Content-type: text/plain Sat Mar 28 20:40:29 EST 1998

My brother suffered 2 TBI's. He was injured in a car accident in November 1996. He suffered a seizure in March 1997 and was re-injured. My brother and my family have gone through an unimaginable time. I have never given up hope, never stopped thinking positively of the future. Life nevers comes with a rule book or manual. You have to play the cards you are dealt. To families dealing with the injury of a loved one, there are others out there who know your pain. Never give up and trust in the power of faith and positive thinking. My brother is trying to reintegrate himself into society. It will never be the same for him, but he is alive and I love him and God left him on the planet for a reason. Good luck to all and God bless.
Betsy Leader
USA - Content-type: text/plain Fri Mar 27 16:09:12 EST 1998

I AM THE MOTHER OF TWO TEENAGERS WHO WERE IN A MOTOR VEHICLE ACCIDENT. BOTH WERE IN SERIOUS CONDITION. THEY HAVE TBI AND HAVE FRONTAL LOBE SEIZURES. IT HAS BEEN A LONG YEAR. MY DAUGHTER WAS AN A STUDENT AND VERY POPULAR BEFORE THE ACCIDENT. NOW SHE IS STUGGLING ON A DAILY BASIS TO BE ACCEPTED BACK IN HER PEER GROUP, MAKING DECISIONS, SHORT TERM MEMORY PROBLEMS AND DEPRESSION AMONG MANY OTHER THINGS. MY SON IS SUFFERING FROM GUILT FOR BEING THE DRIVER AND HAS ALSO HAD MEDICAL PROBLEMS. MY DAUGHTER HAS HAD A MAJOR PERSONALITY CHANGE WITH UNEXPECTED OUTBURSTS. SHE FEELS LIKE A STRANGER IN HER BODY. I WOULD LIKE TO HEAR FROM ANYONE WHO IS DEALING WITH THE SAME ISSUES. ANY ADVICE OR INFORMATION WOULD BE A BLESSING TO OUR FAMILY. AT TIMES I FEEL LIKE A FAILURE AS A MOTHER BECAUSE I CAN'T TAKE MY CHILDREN'S PAIN AWAY.
CARRIE PUETT <CPUETT1 @AOL. COM>
EDGERTON, MO USA - Content-type: text/plain Fri Mar 27 01:18:52 EST 1998

My son has ABI from bike/car at 11 y/o 11 years ago. He flew 30ft in air & down on concrete on Right side of head. He is 22 now with Generalized Tonic Clonic Seizure disorder,long and short memory losses, left body partial paralysis and other secondary aspects of Brain injury. He is now on Topamax for secondary medicine for seizures (1st is tegretol) The Topamax seems to be helping somewhat. Instead of 4-5 seizures a week he has been having 2-3. Our problem of today is his high anxiety that was diagnosed under 2 week 24hr EEG as being precursors to seizure even when he doesn't have a seizure. IE; aura. Since this dreaded fearful anxiety might be organic there doesn't seem to be a whole lot of help. He wanders out loud how he can go on like this. I wish he would read your guestbook but it has to be something that he thinks of and it's on my computer so it's not likely he will accidently come across on his own. He's taking Paxil right now but we're not sure if it is working or if he's just going through metabolism changes. I don't know much about this computer talk but if you'd like to reach me it is, Virginia Johnson. Email address is THEPALM@THEGRID.NET I know I have Java and WWW but it's mostly Greek to me.
Virginia Johnson <THEPALM@THEGRID.NET>
South Gate, CA USA - Content-type: text/plain Thu Mar 26 17:19:59 EST 1998

Hi! One night when we were sitting in our living room eating supper and he just started screaming. My stepmom and I didn't know what to do. So we called an ambulance. When we arrived at the hospital the doctors told us that if he would have gotten there one minute later he would have died. We now know that he had a very bad seizure. He had to take medicine but he is doing just fine now.I liked every thing that I have read. It has really helped me a lot...
Heidi <chicks99@Hotmail.com>
Mexia, TX USA - Content-type: text/plain Thu Mar 26 11:50:54 EST 1998

I'M 34 YRS OLD I WAS A CAR WRECK IN JUNE'87 , WAS IN COMA FOR3 MONTHS , PARALIZED ON RIGHT SIDE.BUT NOW ALL I HAVE TO DEAL WITH IS COGNITIVE PROBLEMS , MOVED TO OKLAHOMA 2 YRS. AGO AND TRYING TO FOR GET THAT I HAVE A BRAIN INJURY. IT JUST IS NOT WORKING OUT THE WAY I PLANNED. I JUST LOOKING TO EDUCATE MYSELF A LITTLE MORE.. THANKS FOR LETTING ME BABLE .
LIZ GALLAGHER <NATURE@BRIGHTOK.NET>
PAOLI, OK USA - Content-type: text/plain Wed Mar 25 23:57:14 EST 1998

I am 13 years old and have to take medicine every day for my seizures. I am embarressed and feel different. I had a seizure in front of my friends and don't feel like them, they are always worried about me, it makes me feel bad and very sad. I am always afraid I might have a seizure at the school or at a dance, I am not doing good in school either, I have missed a lot of school because of headaches and sometimes I am just so tired out. Mom says the medicine makes me sleepy so she lets me stay home because she is afraid if I get to tired at school, I might have a seizure. She is afraid for me to. It makes things hard at home for everyone, and I feel bad about that too. The hardest part is that I have not had a seizure in a while but I still have to take the medicine every day. sometimes I forget and Mom is angry.She is so worried I will have another seizure. I would like to talk to other kids like me. Please write. Casey Mead, 44 Mountain Street, Whitehall N.Y. 12887
Casey Mead <Sky131@CapitalNet.com>
Whitehall, NY USA - Content-type: text/plain Wed Mar 25 21:23:35 EST 1998

My son Casey is 13 years old and developed a seizure disorder last August. he had just come on from playing and had a gran mal, I was horrifed, I thought he died, as he was perfectly healthy.There is no known cause for his disorder. I would love to chat with others and not feel so alone.it has changed our lives so much! It is always a struggle and he constantly forgets his medicine! Maybe he would also like to share as he has been very depressed, and feels different. Thank you for this oppurtunity. Lynn
Lynn Mead <Sky131@CapitalNet.com>
Whitehall, NY USA - Content-type: text/plain Wed Mar 25 21:12:32 EST 1998

Where to begin... I suffered a TBI in October of 1996. I am still bitter about how the medical system shuffled me through. Now, a year and a half later I am still battling slight deficits. I have recovered almost completely, but am fighting psychological changes. Thank you thank you for giving me the information to let me know that I am not alone in re-creating my life and personality. I am presently working as a nurse aide in home health care with TBI survivors. It is fascinating how we can connect on similar symptoms. It gives me pleasure to be there for someone, and help to educate my co-workers and my client's family on how to communicate with those who have a TBI. I'd enjoy hearing from anyone out there. Thanks!
Liz Shelley <lshell@together.net>
Stowe, Vt USA - Content-type: text/plain Mon Mar 23 11:26:39 EST 1998

On May 18th I had a subdural HEmatoma and that caused a stroke. I have had pt ot and speechtherapy over a ten month period. after a huge improvement and hands on life living skills aides come in to make life more prosperous. I'm very thankful for these people who makelife more enjoyable.
Cheryl Chateauvert <lshell@together.net>
E. Montpelier , Vt. USA - Content-type: text/plain Mon Mar 23 11:11:30 EST 1998

Just thought I'd let you know that this is an incredible page! My uncle has epilepsy and he's one of the aweetest people alive. It really hurts to see how cruel people can be! Keep up the good work!
Anna
- Content-type: text/plain Sat Mar 21 21:25:35 EST 1998

I thank god everyday for people like you and what he has done for me. I have been a school adm. for the past 14 yrs. because of his grace may god bless you.
DOuglass Johnson <h13673>
mansfield, oh USA - Content-type: text/plain Fri Mar 20 22:36:32 EST 1998

Thank you so much for sharing all of your thoughts and feelings. I am doing research on TBI, and I have been profoundly touched and enlightened by your web pages. Many poems and personal stories bought tears to my eyes. I feel compelled to remind you all to focus on your strenghts..for they are many. Your weaknesses you will surely overcome or accept..that is obvious in what I have read today. Best wishes to you all.
kim pelle <kpelle@ius.indiana.edu>
new albany, in USA - Content-type: text/plain Thu Mar 19 10:01:57 EST 1998

I work with individuals who have disabilities and most of them have seizures and your poems help us as caregivers have some idea of how the people we care for are feeling since alot of them cannot speak or communicate with us. I really liked your poem titled " bird in a cage" and have passed it on to the directors of the organization that I work for and I also have it hanging in the home that I am a supervisor in so that my staff can also understand.... thank you and If you have any other good poems for caregivers please email them to me if you dont mind.... thanks again and I hope all of you the best of luck and I hope you can all make your dreams come true...
SANDY <dopey35ak@aol.com>
anchorage, ak USA - Content-type: text/plain Thu Mar 19 04:10:20 EST 1998

I have really enjoyed reading this page; and it's contents. So glad to hear of other going through the ups and downs of epilepsy. My son is the person who is have seizures, right now we are going through many changes. He had recently been put on a medication called Zeronton, he has had no success with it. He is on Epival and Topamax, which is a very new medication as of April 1997 in Canada. IF ANY ONE OUT THERE IS USING TOPAMAX PLEASE LET ME KNOW HOW IT IS WORKING FOR YOU. I AM STILL VERY CONFUSED AND UNSURE IF WE ARE GETTING THE NEEDED RESULTS. ANY INFORMATION ON THE WAY THIS DRUG (topamax) IS WORKING. THANK YOU PATRICIA CONVOY E-MAIL IS USER979754@aol.com Patricia Convoy Cambridge, Ontario Canada - Content-type: text/plain Sun Mar 15 22:20:06 EST 1998 ------------------------------------------------------------------------ Attention "Survivors" and Caregivers!!!!!!! I am a Two-time brain surgery "Survivor;" I am in the process of writing my second book. I am looking for those
Patricia Convoy <User970754@aol.com>
Cambridge,, Ontario Canada - Content-type: text/plain Wed Mar 18 09:40:27 EST 1998

Dear Debbie, this is my second time signing your guestbook. I have a 10 year old son with tbi. I just read your poem about ignorance and had to tell you that it really touched my heart. One of the biggest problems that we have is that people treat my son badly because they expect him to act a certain way and think that they have him all figured out. No matter how much information I supply his school with, or how many times I speak to certain teachers, they always seem to "forget" that he needs more understanding and patience. When I read your poem, I knew that you understood. Thank you.
Mary Taylor <Horses@ziplink.net>
USA - Content-type: text/plain Tue Mar 17 17:52:29 EST 1998

I have suffered epilepsy and it hasn't been the best thing in the world to have. The seizures have stopped, due to medication, but I still feel my mind has been affected. It is only now that I have really been thinking about my condition. This is because I have been having trouble at work; whether this is my fault or not I don't know, but I believe the problem is memory loss; I therefore attempt to use selective memory, but still it takes me a few times to go in. I occasionally feel depressed (being one result my epilepsy, I'm not sure of), but possibly having memory loss or having a completely different psychological problem is really worrying me! My career plan in computers is on a declining slope - I don't want to be manual labour! I want success, but this light is dimming slowly. I am known to be a fairly intelligent person and that is what annoys me so much. My youth training coordinator basically believes I don't take everything in and the only explanation she and I have for this is my epileptic condition. All I would like is for anybody, who understands how I feel, to reply and talk to me because there is no one else, who I know. I think the thing that worries me is that I am not fully "with it," though I definitely am as far as know. If you are intersted, I am quite happy to talk about how I think my condition was caused, what has occurred and how I am coping. Yours faithfully, Drew Reader
Drew Reader <Drew Reader/uk/contr/ibm@ ibmgb>
Bristol, England United Kingdom - Content-type: text/plain Mon Mar 16 12:31:20 EST 1998

I have suffered epilepsy and it hasn't been the best thing in the world to have. The seizures have stopped, due to medication, but I still feel my mind has been affected. It is only now that I have really been thinking about my condition. This is because I have been having trouble at work; whether this is my fault or not I don't know, but I believe the problem is memory loss; I therefore attempt to use selective memory, but still it takes me a few times to go in. I occasionally feel depressed (being one result my epilepsy, I'm not sure of), but possibly having memory loss or having a completely different psychological problem is really worrying me! My career plan in computers is on a declining slope - I don't want to be manual labour! I want success, but this light is dimming slowly. I am known to be a fairly intelligent person and that is what annoys me so much. My youth training coordinator basically believes I don't take everything in and the only explanation she and I have for this is my epileptic condition. All I would like is for anybody, who understands how I feel, to reply and talk to me because there is no one else, who I know. I think the thing that worries me is that I am not fully "with it," though I definitely am as far as know. If you are intersted, I am quite happy to talk about how I think my condition was caused, what has occurred and how I am coping. Yours faithfully, Drew Reader
Drew Reader <Drew_Reader@IBM.>
Bristol, England United Kingdom - Content-type: text/plain Mon Mar 16 12:20:24 EST 1998

Sorry forgot to leave my link to my Brain Tumor Forum Online Support Group..

Here it is
Brain Tumor Support Group Come join in..

My Post is Below

Thanks

Brenda Burey
Brenda Burey <920776@ican.net>
South Porcupine, Ontaio Canada - Content-type: text/plain Mon Mar 16 10:30:41 EST 1998

Hi Everyone My son had a Brain Tumor at the age of 6 months. Choriod Plexus Papilloma. He had a shunt put in 22 days later.. My son had no physical or mental, except memory, Problems. But 14 years later he had a very bad Brain Hemmorage.. His shunt was blocked for 1 and a half to 2 years that caused the hemmorage. The doctors told me that if everything was ok after the age of five then we won't need to worry again.. So wrong he was.. I have a hard time dealing with this chang in diagnosis. He will need further operations and we have to what that the hemmorage doesn't happen again... We have CT scans every year now and he is so deppressed and scared at times... Right now he is fine emotionaly and I hope it last for a long time. Because when he get depressed he can't sleep and stays up all night.. Then this puts a tole on me.. He sleeps on the couch so he doen't feel alone.. Any way I am the HOST of a Brain Tumor Online Support Group. If you would like to join me and others. I would like that.. Brenda Burey Mom of Steven DXD Aug 1982 shunted. Brain Hemmorage 01/96... Thanks for the great site...


Brenda Burey <920776@ican.net>
South Porcupine, Ontario Canada... - Content-type: text/plain Mon Mar 16 10:22:14 EST 1998

very useful
chris fendley
uk - Content-type: text/plain Mon Mar 16 08:32:50 EST 1998

I have been seeing a guy for about 6 months or so and he had an accident which lead to him having a brain injury about 4 years ago. Reading some of your poems and stories really helped me understand more about what he must goes through every day. Every so often he gets really down and angry - I've always listened and been supportive - I love him. But sometimes I feel it's not enough? If by chance you could email me on what I should do. cheers
jill <jillyism@hotmail.com>
Brisbane, Qld Australia - Content-type: text/plain Mon Mar 16 01:59:08 EST 1998

I have really enjoyed reading this page; and it's contents. So glad to hear of other going through the ups and downs of epilepsy. My son is the person who is have seizures, right now we are going through many changes. He had recently been put on a medication called Zeronton, he has had no success with it. He is on Epival and Topamax, which is a very new medication as of April 1997 in Canada. IF ANY ONE OUT THERE IS USING TOPAMAX PLEASE LET ME KNOW HOW IT IS WORKING FOR YOU. I AM STILL VERY CONFUSED AND UNSURE IF WE ARE GETTING THE NEEDED RESULTS. ANY INFORMATION ON THE WAY THIS DRUG (topamax) IS WORKING. THANK YOU PATRICIA CONVOY E-MAIL IS USER979754@aol.com
Patricia Convoy <user979754@aol.ca>
Cambridge, Ontario Canada - Content-type: text/plain Sun Mar 15 22:20:06 EST 1998

Attention "Survivors" and Caregivers!!!!!!! I am a Two-time brain surgery "Survivor;" I am in the process of writing my second book. I am looking for those who would like their stories published. If you would like to touch the lives of others in a wonderful way, share your story. E-mail me with your story; just indicate your permission for it to be printed. If you would like your name to be changed or remain the same in the book, please indicate this also. Following the receipt of your e-mail, I will be in contact with you via e-mail. Thanks! I look forward to reading your stories. John Snyder, "Survivor"
John Snyder <mtnbliss@yahoo.com>
USA - Content-type: text/plain Sun Mar 15 19:04:14 EST 1998

Nice page, I salute all who suffer from any type of seizure, I was diagnosed 2 years ago with partial complex (temporal lobe). currently taking 1750mg of depakote daily, if anyone else has taken this medicine or has heard of alternatives please let me know. This stuff doesn't work to great. thanks.
Jeannine Howard <jhoward@ptialaska.net>
Ketchikan, AK USA - Content-type: text/plain Sat Mar 14 16:51:23 EST 1998

I was injured a year ago, last February 12. Am allowed to work part-time at my old job, nut not to drive. Am still very sad about what has happened, but aslo realize that I was lucky in that my Dad was killed in a car accident when I was in grad. school and my brother was killed about a year later on his motorcycle. Rod
Rod E. Musselman <mussere@ssw.alcoa.com>
Linden, IN USA - Content-type: text/plain Fri Mar 13 13:47:54 EST 1998

I am a "Survivor" who has compiled, bound and self-published a simple book of poems extracted from a personal journal following my injury in early 1991. This book is Inspirational in form, and speaks deeply to "Survivors" and provides insight for family members, as to what their loved one may be experiencing. To receive a copy, e-mail me; I will contact you ASAP!
John Snyder <mtnbliss@yahoo.com>
Hiawassee, Ga USA - Content-type: text/plain Fri Mar 13 00:01:18 EST 1998

I am a "Survivor" who has compiled, bound and self-published a simple book of poems extracted from a personal journal following my injury in early 1991. This book is Inspirational in form, and speaks deeply to "Survivors" and provides insight for family members, as to what their loved one may be experiencing. To receive a copy, e-mail me; I will contact you ASAP!
John Snyder <mtnbliss@yahoo.com>
Hiawassee, Ga USA - Content-type: text/plain Thu Mar 12 23:58:30 EST 1998

I just want to say thank you. I found thius page accidentially but it has really been helpful! I've had epilepsy since a head injury when i was a teenager. More than 20 years ago. I have a great job and a wonderful family now but the seizures are a part of my life I always try to hide from other people. Obviously, it doesn't always work. I've never talked to anyone else who has epilepsy before tonight. Thank you for giving me this opportunity.
samigrrl2 <samigrrl2@aol.com>
phila, pa USA - Content-type: text/plain Wed Mar 11 21:16:40 EST 1998

Great Website! As a caregiver at Lakeview Neurorehabilitation Center I am always thrilled to come across another resource on the net with good information. Thanks!
Teena Ouellette <touellet@gwi.net>
Limerick, ME USA - Content-type: text/plain Sat Mar 7 18:03:16 EST 1998

thankyou all for the letters that you have wrote. They make me feel so good to know that I am not alone in this.My only wish is that we all can see the light at the end of the tunnel.. someday, somehow......
Bethmarie B. Groom <Birdybaby@aol.com>
manchester, ct USA - Content-type: text/plain Sat Mar 7 16:48:24 EST 1998

It was great to read letters from people who also have children with traumatic brain injuries. My daughter is 6, and had a fall at the age of 2 1/2. Since then she had suffered violent seizures, and unable to speak clearly. She is a great little girl with a great smile. I find it hard sometimes to look at her and not cry. We have had a bad week this week, with her having as many as 6 major seizures in a day. Just to know that there are people out there to talk to makes it a lot easier. Just want ed to say thanks to all......
Traci <mrsfiretee@aol.com>
ny USA - Content-type: text/plain Wed Mar 4 23:46:43 EST 1998

I really enjoyed going through the page. I read up on things a doctor I once had couldn't answer. Keep up with your reasearch and please keep us all updated and you might want to include "Depakote" and "Lamictal" to your medications list. They are working EXCELLENT for me and I have been on phenabarbitol,dilantin,tegretol,and I find Depakote and Lamictal to work best for me and may help others as well. I have had Epilepsy since I was 3yrs old and now at 31, I have to say those 2 med. works. May all readers look-up these 2 new medications. It might well be worth it, My children don't panic anymore and they're even happier. thanks to you,I now know everything..:)
Tara Montebello <TMontebell@aol.com>
Islip Terrace, N.Y. USA - Content-type: text/plain Tue Mar 3 22:58:46 EST 1998

I, too, caught referral to your site, which Dickibus sent out in post form to all Epilepsy-L group. Looks GREAT!...& SOUNDS great...to hear from you again! Big Cheers, Pat Anthony
Pat Anthony <cechop11@aol.com>
Lubbock, Tx USA - Content-type: text/plain Tue Mar 3 20:31:17 EST 1998

It is tough bein a college student with epilepsy. Sometimes I have to dig deep within myself and find enough strength to carry a twenty-five pound book bag from one end of campus to another and work in the admissions office after classes. When I had a little talk with the Lord, I've began to accept the fact that I have epilepsy and that everything was going to be O.K.
Marvin K. Lewis <130@cybrtyme.com>
Gadsden, AL USA - Content-type: text/plain Sun Mar 1 18:15:55 EST 1998

I think your site is an excellent help for parents like myself who are struggling to help their children who have suffered a traumatic brain injury as my own 13 year old daughter did. I would like to receive e-mail from others like myself who have a child with a brain injury and/or a seizure disorder as a result of said injury. Would like to share ideas on what others have done to get through these difficult times. It has been over 4 years since the fall from a tree which left her with brain damage, but in so many ways we are living as if it were yesterday. Thanks.
michele <sharris698@aol.com>
tucson, az USA - Content-type: text/plain Thu Feb 26 22:30:33 EST 1998

I have had seizures sense birth. Your Web Site has been a big help to me and, hopefully in the future it will continue being. Thank You for the the usage.
Brian L. Nelson <blnelson74@hotmail.com>
N. Charleston, SC USA - Content-type: text/plain Wed Feb 25 21:06:40 EST 1998

I think i my entry got messed up. Here it is again: Here is a poem that i wrote: Slowly the storm rolls in / Often striking without warning / Despite your efforts you cannot stay / Now you're beginning to fade away / Feelings of akwardness eat you inside out / The stabbing pains in your head slowly begin to spread / Passing through like waves / The fog creeps in / Your surroundings begin to fade / All noise is muffled by the crashing of the waves / Awful smells invade your nose / Neon yellow lights dance before your eyes / In ever changing designs / You begin to feel weak / Now, at everyone's feet / They think you're gone / But you're still there / Paralyzed and unable to move
Maya <SilvaCh326@aol.com>
pa USA - Content-type: text/plain Wed Feb 25 18:45:54 EST 1998

here's a poem i wrote: Slowly the storm rolls in, Often striking without warning. Despite your efforts you cannot stay. Now you're beginning to fade away. Feelings of akwardness eat you inside out. The stabbing pains in your head, Slowly begin to spread Passing through like waves. The fog creeps in, Your surroundings begin to fade. All noise is muffled by the crashing of the waves. Awful smells invade your nose. Neon yellow lights dance before your eyes In ever changing designs. You begin to feel weak, Now, at everyone's feet They think you're gone. But you're still there, Paralyzed and unable to move.
Maya <SilvaCh326@aol.com>
pa USA - Content-type: text/plain Wed Feb 25 18:37:35 EST 1998

I also have epilepsy. I am going to get a VNS (Vagus Nerve Stimulator) implant and I have started an information page: VNS from a patient's point of view. Please pop in and check it out. If you like what you see, add it to your links. http://www.frontiernet.net/~dnaess/pages/VNS-notes.html
David A. Naess <dnaess@frontiernet.net>
Rochester, NY USA - Content-type: text/plain Tue Feb 24 22:26:08 EST 1998

ON JANUARY 24TH OF THIS YEAR MY FATHER SUFFERED WHAT WAS CALLED A SUB-DURAL HEMATOMA, IT HAD STARTED TO BLEED AND THE ENSUING PRESSURE ON HIS BRAIN CAUSED A STROKE. THE NEXT SAY HE WAS GIVEN A CRANIOTOMY, HIS RECOVER WAS REMARKABLE (HE IS 75, WITH 2 RECENT OPEN HEARTS SURGERYS) HOWEVER 5 DAYS AFTER COMING HOME HE WAS BACK IN THE HOSPITAL FOR A REPEAT CRANIOTOMY IN THE SAME SPOT. NOW THE CRUX, WHILE RECOVERING FROM BOTH OPERATIONS HE WAS PLACED ON DILANTIN, WHICH I UNDERSTAND WAS PREVENTATIVE, HOWEVER LAST MONDAY HE STARTED TO LOOSE FEELING ON HIS RIGHT SIDE, HIS FACE BEGAN TO DROOP, HIS RIGHT ARM WAS UNABLE TO MOVE AND HIS SPEECH WAS BASICALLY NON-EXISTENT. WHAT WAS THOUGHT TO BE A MAJOR ARTERY STROKE (MIDDLE CEREBRAL ARTERY) WAS LATER DISCOVERED TO BE A MAJOR ON-GOING FOCAL SEIZURE. APPARENTLY HIS DILANTIN LEVEL HAD DROPPED, DESPITE BE GIVEN INCREASING DOSEAGES EVERYDAY. I AM VERY FAMILIAR WITH GRAN MAL SEIZURES AND PARTIAL COMPLEX SEIZURES, HOWEVER I KNOW NOTHING ABOUT FOCAL SEIZURES, WHAT THEY ARE, THERE SYMPTOMS, IS THERE AN AURA? ETC.. I WOULD APPRECIATE ANY INFORMATION, I AM GRAVELY CONCERNED FOR MY DAD, HE IS COMIMG AROUND NOW, HIS RIGHT SIDE IS FUNCTIONING, HE IS RECEIVING THERAPY BOTH OT AND PT ON HIS RIGHT LEG AND ARM. HE IS SUFFERING FROM SOMETHING CALLED "WORD FINDING DEFICIT", MY MAJOR CONCERN IS THE CHANCES OF THIS HAPPENING AGAIN. I UNDERSTAND THAT BECAUSE OF HIS 2 OPERATIONS HE MAY HAVE A SEIZURE DISORDER FOR THE REST OF HIS LIFE. CAN ANYONE HELP ME WITH STATS, INFO, WAHTEVER? THANK YOU SO MUCH!!!
CHUCK CELENTANO <NUTE36@HOTMAIL.COM>
SYRACUSE, NY USA - Content-type: text/plain Tue Feb 24 10:23:32 EST 1998

In dec 96 I came down with HSV Encephalitis. It happened on my way to work I became uncoordinated, speechless, and eventually unconcious. When I got to the hospital, the driver of the car I was in described my symptoms to the on call neurologist. About six hours later I awoke wit an IV of Acyclovir in my arm and a huge headache. It took about 6 weeks for the headache and vomiting to stop. The Doctors where unsure at a diagnosis at first but later a test came back positive for HSV encephalitis. Has anyone else come down and bounced back from this? I've been told that I got lucky with the doctor prescribing Acyclovir.
Ritchie <rcaron@uniserve.com>
Vancouver, BC CAN - Content-type: text/plain Mon Feb 23 23:27:59 EST 1998

I just love your pages. I have been a diagnosed with Epilepsy,seziure disorder when I was 14 in April 1991. It's great to feel as if I am not the only one with this. If anyone has any information that they would like to share feel free to e-mail. Thank You again. Christine
Christine J. Sales <chrisjs32@hotmail.com>
Roselle, NJ USA - Content-type: text/plain Mon Feb 23 19:20:44 EST 1998

I am a student who has worked with BIPS in the past in the rehab setting and can't wait to get my degree to get back to helping these types of pts get back tp life. I love reading all the latest news that will help BIPS get back to their families sooner.
Rosemarie Manger <rmanger.jetson.edu>
Houston, Tx USA - Content-type: text/plain Mon Feb 23 14:25:37 EST 1998

I am a student who has worked with BIPS in the past in the rehab setting and can't wait to get my degree to get back to helping these types of pts get back tp life. I love reading all the latest news that will help BIPS get back to their families sooner.
Rosemarie Manger <rmanger.jatson.edu>
Houston, Tx USA - Content-type: text/plain Mon Feb 23 14:21:41 EST 1998

I had an aneurysm repaired several years ago and then seizures quickly followed. I have uncinate seizures and haven't been able to find any medication that has a significant impact on the seizures without damaging my eyes or white cell count. Sometimes I feel very suicidal and mostly I miss myself.
Joyce <iamkui@aol.com>
Eureka Springs, ar USA - Content-type: text/plain Sat Feb 21 03:48:51 EST 1998

I was just recently diagnosed with seizure disorder. I find it hard to cope with right now. I can't deal with the no driving thing! I had a grand mal seizure on sat. and I was just put on Tegretol XR. If anyone has any info. or advice feel free to E-Mail me. I am 24 yrs old and my husband and I are almost ready to start a family.
DMR <CtWmnn>
USA - Content-type: text/plain Fri Feb 20 16:38:52 EST 1998

Hello, I wrote before, but i try again. I have a little tumor in my temporal lobe, its not dangerous, but i have a lot of psychic complains. Is there anyone who regognises this and can give me an advise. Because i'm dealing with this since 10 years. The eeg was also wrong so they think its temporal lobe epilepsy, i'm now taking tegrtol 400 mg a day, but i don't thing it helps very much. Sylvia Treure-Koster
Sylvia Treure-Koster <Wensveen@.tref.nl>
alblasserdam, holland - Content-type: text/plain Fri Feb 20 06:07:10 EST 1998

Hello, I Wrote before, but i had no response so i try again,> ai have a little tumor, wich is not dangerous in my temporal lobe. I have a lot of psychic complains. The EEG was also wrong. The doctors say its temporal lobe epilepsy, so i 'm now taking tegretol 400mg a day. But i stil sufffer, sometimes i don't no hoow to go on, i'm dealing with this problem for 10 years now. Last august the found the little tumor, but the solution is not been found yet. Is there anyone who recognise psychic problems and give me an advise. Sylvia Treure-Koster
Treure-Koster <wensveen@.tref.nl>
alblasserdam, holland - Content-type: text/plain Fri Feb 20 05:59:33 EST 1998

Hello, I Wrote before, but i had no response so i try again,> ai have a little tumor, wich is not dangerous in my temporal lobe. I have a lot of psychic complains. The EEG was also wrong. The doctors say its temporal lobe epilepsy, so i 'm now taking tegretol 400mg a day. But i stil sufffer, sometimes i don't no hoow to go on, i'm dealing with this problem for 10 years now. Last august the found the little tumor, but the solution is not been found yet. Is there anyone who recognise psychic problems and give me an advise. Sylvia Treure-Koster
Treure-Koster <wensveen.tref.nl>
alblasserdam, holland - Content-type: text/plain Fri Feb 20 05:59:00 EST 1998

"HOPE" spoke to me in many areas, and am passing it on to someone in need I ran accross last night, just by chance. I believe it will help this person...truly inspirational. Thanks, Sam
Sam <alivensf@aol.com>
USA - Content-type: text/plain Thu Feb 19 07:55:55 EST 1998

Hey Debbie, I was referred her from the Epilepsy List by Dickibus. Looks great! ANDY
Andrew Wise <awise@fcc.gov>
Alexandria, VA USA - Content-type: text/plain Wed Feb 18 12:17:44 EST 1998

I had a car accident in June of 1991. I have a TBI and was in a coma for almost 3 months. I am doing pretty good right now, but have seizures even though I am taking Tegratol. I was really surprised to see all the names on your guestbook, I have always felt alone. I really enjoyed your poem "Friends" because since I suffered my TBI I do not have any friends, well just my best friend, my Mom. I would really like to hear from others, just to chat.
Mary Ruth Pruitt <pruitt2@marshall.edu>
Huntington, WV USA - Content-type: text/plain Tue Feb 17 19:51:07 EST 1998

First of all I'd like to say that this website was great. I found tons of info. I loved the poems. My name is Maya. I'm 15. I've been experiencing weird "spells" since i was around 7 years old. The first time it happened the person with me told me i fainted. So thats all i thought it was. But it was happening to much. I started looking into it and it started to sound like simple or complex partial seizures. I can't say for sure that it is, but that's what it sounds like. Here's what happens: Well, I don't remember everything that happens but this is what i do remember. First, i get this extremely weird feeling. Then all noise around me becomes extremely quiet and i can't really hear much of what is being said. Almost like everyone is far off in the distance. Then i gt this terrible pain in my head and then throughout the rest of my body. I can't exactly describe the feeling. Sometimes during this I'll hear something but i don't know what it is. Its like this high pitched sound. Then i'll see this bright yellow light (fluorescent/neon) that almost becomes blinding. Then i'll start to see all sorts of weird bright colors and patterns like i'm looking through a kaleidescope. Sometimes i smell something, like what it smells like when the dentist is drilling your tooth for a cavity. After this i can sometimes "distract" myself and the symptoms go away. If i can't "distract" myself, the symptoms get worse and then i lose consciousness. Some of the times i know what is going on around me and i can respond to things. Other times i don't know what is going on and i can't respond to things. Has anyone heard of anything like this? Any information would be greatly appreciated. Thanks. You can email me at: SilvaCh326@aol.com
Maya <SilvaCh326@aol.com>
pa USA - Content-type: text/plain Mon Feb 16 00:43:45 EST 1998

I'm not sure I fit in here because I did not have any kind of accident that caused my brain damage and seizures. I had two brain hemorrhages from an arterial-venial malformation, and two brain surgeries. My seizures are now controlled by medication, but I have thinking problems asociated with the frontal lobe damage. I think is is called "acquired brain injury"???
Donna <dlpd@aol.com>
IN USA - Content-type: text/plain Sun Feb 15 16:35:40 EST 1998

I've suffered from Epilepsy since I was a baby. My seizures got really bad between the ages of 16-19. They changed from only partial complex to partial complex and tonic-clonic. When I went to college I went into status-epilepticus twice. I was pulled out of school. I started to look into neuro-surgery. I was fortunate enough to be chosen as a candidate. Neuro-surgery is what got my seizures under control. I'm driving now with my seizures under total control. I just had my last tonic clonic 2 weeks ago. However, that's only because I missed a dose of medicine. I will probably have to take medication for the rest of my life. But It's a lot better than seizing every 2 days(which is how it was before neuro-surgery)At least now I can be more independent & don't have to depend on my mother for car rides. Thank God. I still often feel seizures coming on, but I haven't had one, where I go unconscious, since 2 weeks ago.
Christine M. Lage <Chrislage@AOL.com.>
Morganville, NJ USA - Content-type: text/plain Thu Feb 12 11:53:11 EST 1998

I've suffered from Epilepsy since I was a baby. My seizures got really bad between the ages of 16-19. They changed from only partial complex to partial complex and tonic-clonic. When I went to college I went into status-epilepticus twice. I was pulled out of school. I started to look into neuro-surgery. I was fortunate enough to be chosen as a candidate. Neuro-surgery is what got my seizures under control. I'm driving now with my seizures under total control. I just had my last tonic clonic 2 weeks ago. However, that's only because I missed a dose of medicine. I will probably have to take medication for the rest of my life. But It's a lot better than seizing every 2 days(which is how it was before neuro-surgery)At least now I can be more independent & don't have to depend on my mother for car rides. Thank God. I still often feel seizures coming on, but I haven't had one, where I go unconscious, since 2 weeks ago.
Christine M. Lage <Chrislage@AOL.com.>
Morganville, NJ USA - Content-type: text/plain Thu Feb 12 11:52:55 EST 1998

I've suffered from Epilepsy since I was a baby. My seizures got really bad between the ages of 16-19. They changed from only partial complex to partial complex and tonic-clonic. When I went to college I went into status-epilepticus twice. I was pulled out of school. I started to look into neuro-surgery. I was fortunate enough to be chosen as a candidate. Neuro-surgery is what got my seizures under control. I'm driving now with my seizures under total control. I just had my last tonic clonic 2 weeks ago. However, that's only because I missed a dose of medicine. I will probably have to take medication for the rest of my life. But It's a lot better than seizing every 2 days(which is how it was before neuro-surgery)At least now I can be more independent & don't have to depend on my mother for car rides. Thank God. I still often feel seizures coming on, but I haven't had one, where I go unconscious, since 2 weeks ago.
Christine M. Lage <Chrislage@AOL.com.>
Morganville, NJ USA - Content-type: text/plain Thu Feb 12 11:52:50 EST 1998

I didn't read much, but I'd like to say lalala...
Guaco <jmesa@ucsd.edu>
La Jolla, CA USA - Content-type: text/plain Wed Feb 11 03:24:43 EST 1998

Hey , you two ! Where are you ??? Phone no longer working ! We are worried , please get in touch soon Love you lots , XOXO
Anja and Sal
USA - Content-type: text/plain Tue Feb 10 22:55:44 EST 1998

Hey , you two ! Where are you ??? Phone no longer working ! We are worried , please get in touch soon Love you lots , XOXO
Anja and Sal
USA - Content-type: text/plain Tue Feb 10 22:49:41 EST 1998

I would like to say that I have actually only read one poem on this page so far, but what I see so far I really like! I am writing a paper on Gratitude and how it has affected others lives and perceptions, and I would be very interested in anyone else's ideas or stories..email me or Im them to me. I would be very excited and happy!! Sincerely, Holly Hamilton
Holly Hamil <HHamil3772>
Nashville, Tn USA - Content-type: text/plain Tue Feb 10 22:42:35 EST 1998

Found some great resources on your page. Thanks!
Julie Lain <Julie@energyequip.com>
Odessa, TX USA - Content-type: text/plain Tue Feb 10 22:13:29 EST 1998

I have lived with epilepsy all of my life. I had a brain tumor which was removed but did not completely stop my seizures. I am currently taking 3 seizure medicataions (Tegretol XR, Neurontin, and Phenobarbital). I take over 2000mg. of medication a day. I still continue to live a happy life to the best of my ability and would like to encourge others to do the same. If you ever need support or would just like to talk my email address is mgreene@qlab.quintiles.com. Stay strong. Monica Greene
Monica Greene <mgreene@qlab.quintiles.com>
Smyrna, GA USA - Content-type: text/plain Tue Feb 10 18:10:55 EST 1998

Loved it!!!
John <worm0541@aol>
W.P.B., FL USA - Content-type: text/plain Tue Feb 10 16:16:05 EST 1998

I have two younger brothers and one younger sister whom all have epilepsy. I was just looking around getting more information om it and I saw this. Just thought I'd say hi and thanks for having this page!
Carey Harnett <charnett@d.umn.edu>
Duluth, mn USA - Content-type: text/plain Mon Feb 9 20:50:23 EST 1998

Hi, Just stopped by, thank you for having this page. Arthur DiDonna
Arthur DiDonna <writer@exploremaine.com>
East Wilton, ME USA - Content-type: text/plain Mon Feb 9 15:46:59 EST 1998

I was searching this site to get information on shaken baby syndrome. I am at student in Occupational Therapy and am doing a research project on the topic. I was unable to find any information on shaken baby syndrome and was wondering if you could lead me in the right direction. Thank you.
Debbie Haines <vebbie@aol.com>
Baltimore, MD USA - Content-type: text/plain Sun Feb 8 18:19:14 EST 1998

I would like to know as much as possible about TBI if there is more info that you can send my way I would love to read it. I have a great friend that has TBI and I want to help him get better any way I can.. thanks Bethmarie
B. Groom <BirdyBaby@aol.com>
manchester, ct USA - Content-type: text/plain Fri Feb 6 19:28:25 EST 1998

Hi I'm a mother of a 17 year old boy. I was told he had epilepsy after an EEG &MRI. He has been on Tegretol 200mg twice a day now for 3 years, but has never had another fit, or blackout since. He does alot of sport, is very healthy. Will he ever be able to come off this medication?
Kathryn Bennett <lemon-ad@eastcoast.co.za>
Durban, Natal South Africa - Content-type: text/plain Fri Feb 6 07:46:31 EST 1998

When I was about 14 I had my first seizure. I then went 2 years with nothing but then I was diagnosed with Epilepsy.One week or so before my 21st. B-day I had a severe headache so my doctor asked me to go to the hospital and after E.E.G.'s, MRI's and some other radio-active test I was told I needed to have a V.P. shunt, which by the way was much better than what they originally thought it was---a tumor in the brain! I am 23 now (soon to be 24) and about 6 months ago I had a revisin done on the shunt. I was in the hospital this time for 1 month and 3 days and I went in and out of 3 comas, obtained a blood clot and a few other things have gone wrong. The doctors asked my immediate family to start making funeral arrangements and told everyone else "All we can do now is pray!"....since I was basically out of it I didn't know that it was so serious until after I got out. At any rate I've been through months of therapy and I have shown so much improvement....I am so thankful for my life thats for sure!!!!!
Melissa M. Moreno <Mmreno>
Zion, IL. USA - Content-type: text/plain Thu Feb 5 11:59:26 EST 1998

On Feb.6, 1986 I was in a head-on collision. My head went through the windshield and I suffered a skull fracture from the front to the back of my head. The doctor wanted to drill holes in my skull to release the pressure. The wound hadn't bled enough. I refused. Being young and silly, I signed myself out of the hospital the next day, against doctors orders. I really didn't think I was hurt. Three years later I began having seizures.My life has deteriorated immensely. Although my seizures are somewhat controlled by medication, I often feel lost and alone. I long to be the person I was before the head injury. I find myself increasingly depressed by my condition and found it reassuring that there were others out there who felt the same way. This site is wonderful, thank you for creating it.
Janet Hokanson <JAN865@aol.com>
OK USA - Content-type: text/plain Tue Feb 3 18:16:43 EST 1998

I love this site! It is my son who has TBI, seizures, etc. I recently copied this and sent it to him. Usually he reads things I send him - I admint I do it a lot and he knows it is because he is so precious to me and I want to help- but doesn't comment much. He moved to Chicago and I am in Kansas City Missouri so we communicate by phone now but he has referred several times to the pages of this book. I am trying to get him interested in the internet and communicating with others. I just wanted you to know that your site and everyones writings really have helped our family. Any time there is an opening for talking and sharing information I believe it helps. My son really seems open to this and to realiziing he is not the only young person in this situation. Thank You! - Kim
Kim Sharitz <epakc@gvinet.com>
North Kansas City, MO USA - Content-type: text/plain Tue Feb 3 14:11:09 EST 1998

I am looking for help and "friends" I suffered a TBI on August 20, 1995 in a MVA. My life is upside down. Anything you can do would be appreciated
Bev Toma <FLOGG1@aol.com>
Hillsboro, MO USA - Content-type: text/plain Mon Feb 2 08:12:02 EST 1998

We are parents of a seventeen year old young man who has survived a severe brain injury(shear injury). He has now moved to the rehabilitation phase of his recovery. We are hopeful that he will recover well. This site is excellant.
Jim and Wanda Parker <jparker810@aol.com>
Mississauga, ontario canada - Content-type: text/plain Sun Feb 1 21:33:02 EST 1998

Hi Deb: God love you! You have once again inspired me, and you are the one so quick to compliment me, one with "IT," an "IT" which has stolen much but which has given so much more in return. Inpsried by YOU, Debbie, I am one step to filing a Civil Action in Federal Court. Why? "'IT' was meant to be," God says. Sooner or later, when we can forgive "IT" and God as well, then action follows. Oh, yes,IT is powerful in its ways but then...so are YOU! Thanks and God Bless You always! "RJ"
RJ <MC1934@worldnet.att.net>
NJ USA - Content-type: text/plain Sat Jan 31 11:04:14 EST 1998

Hi, I'm a dog lover and biochem student at Tulane. I am writing a paper on the biochemical aspects of how dogs actually are able to detect an oncoming event. Could you please email me with any info you have regarding who has done reasearch on this topic. Thanks, Peter
peter brandrup <pbrandr@mailhost.tcs.tulane.edu>
new orleans, la USA - Content-type: text/plain Thu Jan 29 16:06:32 EST 1998

I survived a MVA on 3/31/93 => "ABI/TBI". I was formerly a "Caregiver": RN, Paramedic... I like your page & would like to know if I may use it as a link. I am a member of the "Brain Injury Ring". I appreciate any feedback! Jerry ("jerryprn") >;o)
jerry <jlbajm@aol.com>
Waterloo, IA USA - Content-type: text/plain Thu Jan 29 01:44:55 EST 1998

I'm the Information and Referral Worker from the Brain Injury Association of New South Wales, AUSTRALIA. I like to keep in touch with what is happening with our sister organisations O.S., and also to hear from other interested people. Drop us an Email, we'd be happy to hear from you.
Jenny Bray <biansw@healey.com.au>
Sydney, NSW Australia - Content-type: text/plain Wed Jan 28 17:44:48 EST 1998

I'm the Information and Referral Worker from the Brain Injury Association of New South Wales, AUSTRALIA. I like to keep in touch with what is happening with our sister organisations O.S., and also to hear from other interested people. Drop us an Email, we'd be happy to hear from you.
Jenny Bray <biansw@healey.com.au>
Sydney, NSW Australia - Content-type: text/plain Wed Jan 28 17:43:59 EST 1998

My siezures have developed into tonic/clonic at the age of 30 and I'm looking for some answers as to why after so many years with atonic attacks. This has only just occurred and I'm very concerned (3 times to date within the last 4 months). Thanks.
Twyla <whoopup@telusplanet.net>
Lethbridge, AB Canada - Content-type: text/plain Mon Jan 26 20:10:49 EST 1998

I have had seizures off and on since birth. I am currently working for the United States Department of Justice, Civil Rights Division, Disability Rights Section. If you have any legal questions, please feel free to contact me and I will do my best to point you in the right direction.
Edward Hattery <Edward.Hattery@usdoj.gov>
Arlington, VA USA - Content-type: text/plain Sat Jan 24 15:51:19 EST 1998

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HEHEHEHHEHEHEHEHE <HEHEHEHHEHEHEHEHEH>
HEHEHEHEH, EHEHEH USA - Content-type: text/plain Thu Jan 22 20:21:01 EST 1998

Contacted epilepsy at age 41.Current age is 57.Became envolved with a study using the Vagus nerve stimulator. It as proved to be quite benificial. Went from approximately 27 seziures per month to about 57 actual. I can also activate the stimulator should I feel a aura coming on. I still take medication, but it has been it has been cut back considerabily. Frankly I'm very surprised about the amount of epileptic peoples that don't even know about the Device.
Gus Binkowski <binson1>
bridgeview, il USA - Content-type: text/plain Thu Jan 22 01:48:01 EST 1998

Contacted epilepsy at age 41.Current age is 57.Became envolved with a study using the Vagus nerve stimulator. It as proved to be quite benificial. Went from approximately 27 seziures per month to about 57 actual. I can also activate the stimulator should I feel a aura coming on. I still take medication, but it has been it has been cut back considerabily. Frankly I'm very surprised about the amount of epileptic peoples that don't even know about the Device.
Gus Binkowski <binson1>
bridgeview, il USA - Content-type: text/plain Thu Jan 22 01:47:35 EST 1998

Contacted epilepsy at age 41.Current age is 57.Became envolved with a study using the Vagus nerve stimulator. It as proved to be quite benificial. Went from approximately 27 seziures per month to about 57 actual. I can also activate the stimulator should I feel a aura coming on. I still take medication, but it has been it has been cut back considerabily. Frankly I'm very surprised about the amount of epileptic peoples that don't even know about the Device.
Gus Binkowski <binson1>
bridgeview, il USA - Content-type: text/plain Thu Jan 22 01:47:10 EST 1998

Contacted epilepsy at age 41.Current age is 57.Became envolved with a study using the Vagus nerve stimulator. It as proved to be quite benificial. Went from approximately 27 seziures per month to about 57 actual. I can also activate the stimulator should I feel a aura coming on. I still take medication, but it has been it has been cut back considerabily. Frankly I'm very surprised about the amount of epileptic peoples that don't even know about the Device.
Gus Binkowski <binson1>
bridgeview, il USA - Content-type: text/plain Thu Jan 22 01:42:34 EST 1998

Contacted epilepsy at age 41.Current age is 57.Became envolved with a study using the Vagus nerve stimulator. It as proved to be quite benificial. Went from approximately 27 seziures per month to about 57 actual. I can also activate the stimulator should I feel a aura coming on. I still take medication, but it has been it has been cut back considerabily. Frankly I'm very surprised about the amount of epileptic peoples that don't even know about the Device.
Gus Binkowski <binson1>
bridgeview, il USA - Content-type: text/plain Thu Jan 22 01:39:08 EST 1998

Contactedd Epilepsy from a misquito bite at age 53. Suffer from coplex partial seizures. Became aquainted with the vagus nerve stimulator study, had one implanted which proved to be quit benifictial. Since that time and based partially on my case the fda approved it fo sale.I'm quite surprised about the lack of knowledge a substantial amount of epileptic peoples dont even know about the device.
Gus Binkowski <binson1>
bridgeview, il USA - Content-type: text/plain Thu Jan 22 01:25:10 EST 1998

Contactedd Epilepsy from a misquito bite at age 53. Suffer from coplex partial seizures. Became aquainted with the vagus nerve stimulator study, had one implanted which proved to be quit benifictial. Since that time and based partially on my case the fda approved it fo sale.I'm quite surprised about the lack of knowledge a substantial amount of epileptic peoples dont even know about the device.
Gus Binkowski <binson1>
bridgeview, il USA - Content-type: text/plain Thu Jan 22 01:22:24 EST 1998

Imagine, being 7 1/2 months pregnant and taking your first seizure ever! Thinking it's all over for your unborn child and quite possibly yourself. It happened to me..I was 22 years old. Miraculously, my baby boy was born 8 lbs. 1 oz. and very healthy and normal! I was soon afterwards diagnosed with a brain tumor. I was horrified!
Lossie Reeves <LMR0204>
Falls , PA USA - Content-type: text/plain Wed Jan 21 15:34:12 EST 1998

It's a great website where many fellow epileptics could draw courage and inspiration from! Commendable effort from all who have shared and contributed to this website.
Shirley
- Content-type: text/plain Wed Jan 21 03:02:27 EST 1998

IMAGINE HAVING YOUR FIRST SEIZURE AT THE AGE OF 40 (THAT WAS A COUPLE OF YEARS AGO). I'M STILL HAVING THEM, AS THEY HAVE NOT BEEN CONTROLLED YET. THANK GOD I INFORMED MY CO-WORKERS ABOUT THIS PROBLEM. I WAS GIVING A CO-WORKER A RIDE HOME ONCE AND SUFFERED A SEIZURE WHILE DRIVING. DUE TO THE FACT THAT SHE KNEW ABOUT THIS, SHE TOOK THE WHEEL AND SAVED BOTH OUR LIVES.
DOLORES KIRTDOLL <DKIRTDOLL@AOL.COM>
USA - Content-type: text/plain Tue Jan 20 17:02:46 EST 1998

IMAGINE HAVING YOUR 1ST SEIZURE AT THE AGE OF 40. THAT WAS A COUPLE OF YEARS AGO AND I HAVEN'T ADJUSTED TO THIS YET. THIS IS A TERRIBLE WAY TO LIVE. ON 2 OCCASIONS I HAVE WET MYSELF AND DURING ONE OF THESE TIMES I WAS DRIVING DURING RUSH HOUR. THAT GOD I HAD INFORMED THE PEOPLE AT MY JOB THAT I HAD THIS PROBLEM. I WAS GIVING A CO-WORKER A RIDE HOME FROM WORK AT THE TIME AND SHE KNEW WHAT TO DO. (THIS IS A TERRIBLE WAY TO LIVE)
DOLORES KIRTDOLL <DKIRTDOLL@AOL.COM>
USA - Content-type: text/plain Tue Jan 20 16:57:42 EST 1998

I don't really have the time to make a contribution to this site right now, but I will make the time to do it very soon. My story is compelling, in that, it's about my daughter who suffered a stroke at the tender age of 22mos. She is now 8 years old and epileptic, among other problems... and has been seizure-free for almost two years now. Kellie is currently at 1000mgs daily of DEPAKOTE, it has been the most effective in controlling her seizures. I know this med doesn't work the same for all, but it's been a life saver for us. I apologize for this being so brief. Please feel free to email me.
Joanne Connolly <KelliesMOM@aol.com>
Las Vegas, NV USA - Content-type: text/plain Mon Jan 19 21:41:04 EST 1998

I don't really have the time to make a contribution to this site right now, but I will make the time to do it very soon. My story is compelling, in that, it's about my daughter who suffered a stroke at the tender age of 22mos. She is now 8 years old and epileptic, among other problems... and has been seizure-free for almost two years now. Kellie is currently at 1000mgs daily of DEPAKOTE, it has been the most effective in controlling her seizures. I know this med doesn't work the same for all, but it's been a life saver for us. I apologize for this being so brief. Please feel free to email me.
Joanne Connolly <KelliesMOM@aol.com>
Las Vegas, NV USA - Content-type: text/plain Mon Jan 19 21:42:14 EST 1998

I am researching this website for a class. I am a major in speech-language pathology and am thinking of doing my postgraduate work in tbi's. Thank you for the very comprehensive and informative website and especially for adding the guestbook.
Karen Sharpe <sharpe@warp6.cs.misu.nodak.edu>
Minot, ND USA - Content-type: text/plain Sun Jan 18 01:26:48 EST 1998

I made a mistake in my E-mail adress in my earlier letter. Here is the right one.
Syliva Treure-Koster <wensveen@tref.nl>
Alblasserdam, Netherlands - Content-type: text/plain Sat Jan 17 17:41:38 EST 1998

Hello, I am 33 years old en I have a little tumor in my temporal lobe. The tumor is not dangerous, but i have a lot of complains,suchs as fears. The EEG was also wrong. Is there anyone who has the same complains. Maybe my explanation is not so well, but i hope you will understand greatings Sylvia
Treure-Koster <wensveen.tref.nl>
Alblasserdam, Holland - Content-type: text/plain Fri Jan 16 14:38:57 EST 1998

i think this rules
Tyson <neuralbass>
???????????, ?? USA - Content-type: text/plain Fri Jan 16 09:10:57 EST 1998

Iam thankful for this Brain injury web site I relate to it been looking all over for something like this Thank you and God bless everyone God watches over us thank you again
Robert Park <RPark10424@aol.com>
Gurnee, Ill USA - Content-type: text/plain Thu Jan 15 17:04:18 EST 1998

We have a 31/2 year old son who suffere a devastating attack of meningitis in Jan of 97. It was intitially misdiagnosed as the flu so when he finally received the treatment he needed it was almost too late. Well he is a fighter and has survied every imaginable complication of meningitis - including having venrticular shunts. ( He has had 10 revisions of those in less than a year) He lost everything and spent over 6 months in the hospital. he is now home and undergoing extensive therapy. He also has absence seizure which we have not been able to control with tergratol. (depracote will be added tomorrow) Does anyone out there know of anyone who has had success in controling siezures and improving brian function through bio feedback and the use of hyperberic chambers. We are so desperate to help our son
shulugalle <Shulugalle@aol.com>
woodland hills, CA USA - Content-type: text/plain Tue Jan 13 22:02:33 EST 1998

I have read for the last two evenings your guest book. My boyfriend says that I'm hooked on the computor because I'm very new to the computor. I said no, that I've found a bond to so many people reading the guest book. I have a child that at the age of 3 fell through a set of bleachers, and has a TBI. He is now 13 years old functioning between 6 and 8 years old. It's been a long ten years for us! Fighting with the Doctor's because they wouldn"t believe me that my son also had seizures. I've had Doctors tell me that my son was a "bad kid." For the past ten years my son has been in so many Physcological treatment hospitals I've lost count. Finally as of 10/1/97 my son was admitted to a Neurorehabilition center in Battle Creek. And we are all doing better this is where my son should have been ten years ago. It will always be a battle and if it takes another ten years to get there we will. Thank you all for this page, I don't have to feel so alone with are up hill battles. Please feel free to E-Mail me Nancy Miller Rellim1128
Nancy Miller <Rellim1128>
Midland, Mi USA - Content-type: text/plain Tue Jan 13 15:39:27 EST 1998

Hi,again folks-Good Old LEAD-HEAD!!!! But seriously, I just signed on the guestbook this last Thurs.PM offering to E back to anyone searching for...? Here it is Mon.Pm, and I'm very excited to say that I've already had several very good responses!!!! I pray that the GOOD LORD will bless me as I attempt to offer solace/comfort to others. I KNOW HE will, for nothing, nothing, absolutely nothing is impossible for my GOD!!!! I'm glad that you've included the guests' E addresses in the responses-makes it easier to get in touch;although I have a suggestion that may help improve the site: How about a section devoted to important personal historic dates, ie:wedding anniversaries, birthdates, graduation dates, injury onsets, etc. What do you think? Personally, I believe that progress dealing with disabling situations can be made if one simply accepts themselves as they honestly are, seeking out others to offer comfort and understanding, as well as help and support. If anyone out there in the Wild World of Web; WWW-LAND feels that this is a good suggestion, please do not hesitate to contact me as I enjoy remembering these "special" dates; responding with appropriate cards, e-mails, snail mails, etc. Most of you folks have already made an honest breakthrough in accepting your lives, but how much good does it do you if you hide under the cover of darkness?-I hope this makes some sense to you!!!! Again, if anyone wishes to contact me, I now have three E-Mail addresses, so take yer pick, let yer fingers do the talking and let's get wired!!!!-BRUCE- Eees-To-Me: #1.)bkaesser@mail.orion.org #2.)mrbwk@hotmail.com #3.)mrbwktbi@cedarnet.org Snail:Mr.BRUCE W. KAESSER 712 Brett Circle, Nixa, Mo.65714-7801-May the LORD Bless You and Keep You!!!!
Mr.BRUCE W. KAESSER <mrbwk@hotmail.com>
Nixa,, Mo USA - Content-type: text/plain Mon Jan 12 20:53:08 EST 1998

I realy love this page. In Nov. of 1996 I was diagnoised with temporal lobe epilepsy, but I had been having seizures for about 2 or 3 years before. Since my type of epilepsy is not as common, and not as easy to detect, it took longer to diagnois. This page has helped me, I know that I'm not the only teenager with this problem. Thanks!
Gina
El Dorado Hills, Ca USA - Content-type: text/plain Mon Jan 12 18:28:37 EST 1998

Hi, I am having trouble with my partial complex seizures that developed because of a severe closed head injury. I wrote this poem and I didn't know how to get into your poem section other than this, so ... Frustration what happened? life was good I was moving ahead and I was happy Or so I thought, so many things have changed so many things haven't changed and I'm still happy but where do I start? what do I do? and most importantly what can I do? So I start over I make new friends I still have some old ones and I still have my sanity I have accepted the accident I am learning not to question so much there aren't any answers anyway so here I sit, my life upside down, and I ask - what happened? thank you, it is nice to read and listen to other people who have problems similar to mine. It has helped me deal with what has happened. Jill
jill
USA - Content-type: text/plain Mon Jan 12 14:04:17 EST 1998

My son had encephalitis in Sept.1987. He was 6 yrears old he is now 16. He does not talk any more and is in diapers. He also puts everthing in his mouth and I do mean EVERTHING.He gets chocked a lot. He has seizures almost evey day.He also has some behavior problems. He will eat anything but throws up most of the time. He only weighs about 60 pounds. He can still walk and does it well and a lot. He does wander away if he gets out of my sight. We have a half door up to the kitchen so he does not get into anything unsafe. Also we have a lock on the outside of the bathroom door,so he does'nt eat the soap. He must have constant supervision. I wonder if there are other cases like his????????
TOYVAN992 <TOYVAN992@AOL.COM>
COVINGTON, KY USA - Content-type: text/plain Mon Jan 12 11:11:22 EST 1998

My Brother has Epilepsy. The reason why I am telling you is because even though he has Epilepsy he still is is going on with every day living. Three years ago he earned his Eagle in Boy Scouts and last year he graduated from High School. If any one is out there and wants more information on how he lives a normal life please E-Mail me. I will be able to talk to anyone about what he did.
Kelly Hinds <bhinds@frontiernet.net>
Fairport , NY USA - Content-type: text/plain Sat Jan 10 15:31:33 EST 1998

I am a64 year old head trauma victim Am a born again christian and thank God for my healing I will pray for every letter on this site what a blessing for it May God bless you all and he will amen
Bob Park <rpark10424@juno.com>
Gurnee, Ill USA - Content-type: text/plain Fri Jan 9 19:45:17 EST 1998

Hi,my husband shot himself 8 months ago, and damaged his frontal lobe, I was pregnant at the time and have been his caregiver ever since, and frankly I'm going crazy, we don't have any money and I've been trying to take care of him and the baby but it's hard, welfare is giving us a hard time and I'm so fed up. The gun shot was we think an accident but we were fighting at the moment, his mom and sisters have become violent with me so we just moved to California and are homeless and are staying at a shelter. I hear all your wonderful stories of how you are all doing great but I can't feel the same.I know I should be thankful to the Lord for having have spared his life and i am it's just so hard, I've been very strong, I'm tired.We had only been married for 8 months when this happened, and I married him just after knowing him ten days, so I was just getting to know him, I wish I wasn't so selfish and felt sorry for myself. I was with him every single night in the hospital, I love him.
Celia Luna <celialuna@hotmail.com>
Chula Vista, CA USA - Content-type: text/plain Fri Jan 9 17:26:02 EST 1998

I'm 34 Years old In 1988 I HAD A CAR ACCIDENT I WAS IN A COMA FOR 3 WEEKS AFTER I HAD COME HOME FROM THE HOSP. I STARTED HAVING PARTIAL COMPLEX SEIZURES DOCTORS TRIED SEVERAL TYPES OF MED NONE SEEMED TO HELP CONTROL THE SEIZURES I've had 4 too 7 seizures a MONTH ON NOV 14 1997 I HAD BRAIN SURGERY DOCTORS REMOVED MY RIGHT TEMPORAL LOBE SINCE THE SURGERY I HAVE HAD NOT FOR SURE MAYBE 2 SEIZURES ??? OR WAS THEY JUST WEIRD FEELINGS??? I KNOW I AM STILL IN THE HEALING STAGE FROM THE SURGERY NOTE MY HUSBAND & FAMILY+ FRIENDS HAVE BEEN VERY SUPPORTIVE FOR YEARS THIS HAS HELPED ME ALOT I WOULD LIKE TOO HEAR FROM SOMEONE WHO HAS HAD THIS TYPE OF SURGERY ANY INFORMATION WOULD BE HELPFUL TOO ME E-MAIL JSKRAB026@AOL.COM FOR DIANA 1/9/98
DIANA D. BARKS <JSKRAB026@AOL.COM>
BRIGHTON , IL. USA - Content-type: text/plain Fri Jan 9 13:55:25 EST 1998

I tried to a message to Kim Sharitz by clicking on her e-mail adress, but it was sent back by my MAILER-DEMON with an unknown host. I hope she sees this and sends me her correct address
Wisoer <wlah@erols.com>
USA - Content-type: text/plain Thu Jan 8 23:23:09 EST 1998

From what I've seen, this site looks amazing I can't wait to see more!!! You're poem was so true. Dream 2b happy!
Lynn Holleran <wlah@erols.com>
Woodbridge, VA USA - Content-type: text/plain Thu Jan 8 22:53:38 EST 1998

I am a 38y.o. 15y. post TBI survivor, too. On Thursday evening, Dec. 23rd, 1982, I suffered a 22cal. gunshot to the right frontal lobe of my brain. While in my nine week coma, I believe that the LORD JESUS my CHRIST and I had ourselves a little face to face outta body chat. All I know is the only reason I'm still here alive and kicking is thru HIS devine grace and mercy. If anyone out there feels the need to get their problems off of their chests, I'll listen/try to help if I can. Even though I still have a 22cal. gun shell lodged deep in the center of my brain, I consider myself to be a winner. My life hasn't been perfect, I've made many mistakes, but compared to three-fourths the world, I'm a millioaire!!!! If anyone wants to chat, with HIS help, I will answer any and all EEEs-to-me; who knows if we're not careful, we just may solve afew problems!!!! I want to help if I can, no pity but encouragement!!!! ;-) BRUCE
Mr.BRUCE W. KAESSER <mrbwktbi@cedarnet.org>
Nixa,, Mo. USA - Content-type: text/plain Thu Jan 8 21:26:17 EST 1998

I,too am a rehabilitated post TBI survivor-15 years this last Dec. 23rd. Now I joke and claim this date as my birthday, (actually my "Born Again" B-day), because while I was in my nine week-long coma, I experienced an out of body, face to face talk with the LORD JESUS the CHRIST,in whom I have placed all of my faith, trust, and LOVE in; because "For GOD so LOVED the world that HE sent HIS only begotten SON, who that should ever believeth in HIM, shall have eternal life!!!! To GOD be the glory!!!! Anyone out there feeling the urge to be inspired/uplifted/encouraged-then please E-to-me. As a challenged person, myself, I can identify with the depression, the feelings of frustration. If you want to chat about anything at all, please feel free to connect. I will do my best with HIS help to answer any and all Eees-to-me. Well, whatareyawaitingfor? Let's talk out our problems together-who knows, we may solve a few and really live LIFE to the max!!!! Saved by HIS GRACE, BRUCE
Mr.BRUCE W. KAESSER <mrbwktbi@cedarnet.org>
Nixa,, MMo. USA - Content-type: text/plain Thu Jan 8 21:11:48 EST 1998

I really liked all the poems
Elizabeth Staley <wwjd_7@hotmail.com>
Russell, KY USA - Content-type: text/plain Wed Jan 7 23:09:04 EST 1998

Grate info! Keep up the good work!
Suzanne
- Content-type: text/plain Wed Jan 7 03:05:57 EST 1998

i have a seizure alert cocker and a landlord who doesn't understand. sometimes it is an interesting fight!
wendy <lw@youngminds.com>
gunnison, co USA - Content-type: text/plain Sun Jan 4 19:17:39 EST 1998

I just added a comment to this book and it was really long but would you believe I thought of something else I'd like to ask those of you used to dealing with this. Another problem my son has is that he continues to use marijuana. I and many others including his doctors have talked with him about this. I have gotten him literature. Sometimes I think he is purposely trying to hurt himself. When he first came home from the hospital he cut on himself, he used LSD and I really believed he was trying to kill himself. Can anyone offer any insight into this? Any suggestions for solutions? Thank You! - Kim
Kim Sharitz <epakc@gvinet.com>
Gladstone, MO USA - Content-type: text/plain Fri Jan 2 21:13:50 EST 1998

My son Adam had a car accident Nov. 29, 1997. He had a nick in his carotid artery that was not detected. Four days later he had a stroke that left the left side of his body paralyzed. He also developed seizures. He is making a good recovery. He can walk now and he is regaining some use of his hand. The seizures are really scary for him because they are having a hard time regulating them. The stroke also affected his thinking processes. It has been really hard as his mom to watch this. He is very much in denial about this and won't talk about it. It has been very hard to watch this young man (he's 19) go from very bright and "quick" to his thought processes seeming very dulled. He tried to go to college but could not focus and retain infor. It is hard for him to admit there are changes. In fact, people who didn't know him before can't tell that anything is wrong with him - but I can. We have found that some educators are very supportive but unfortunately not the majority. He did recently get a job in a mail room at a law office in Chicago. He had a seizure on the train, in the hallway of the apt bldg and is very scared that he will have one at his new job. He has a difficult time with seeing this as something that shouldn't happen to a young person. Like a lot of people he and his friends thought strokes only happened to old people. People say this to him all the time. My question to anyone out there who has dealt with this is: How can I hook him up with other young people that may have had similiar traumas? I have really enjoyed looking through this web site. I am new to the internet. I have copied a lot of the info to send to my son. God bless those of you with this problem and those who help! - Kim
Kim Sharitz <epakc@gvinet.com>
Gladsone, MO USA - Content-type: text/plain Fri Jan 2 21:08:34 EST 1998

I really like it - keep on going.
Piotr Zwolinski <pzwolinski@hotmail.com>
Warsaw, poland - Content-type: text/plain Fri Jan 2 15:24:30 EST 1998

i loved ur poem. i used to have seizures when i was little and now i'm 16, i haven't had one since i was 8 and have been off medicine since i was 9. "daddy's princess" she was staring at the skies, and tears were in her eyes, sick of hearing pointless and mindless lies. she was on her last layer of skin living in her own hell drove herto the drugs that are wearing her life so thin. what ever happened to daddy's little girl, who knew his princess would turn just like a wirl. now what you hear is screaming behind the door, smacking her around, saying shes a worthless whore. if she would ever change, would things ever change? or would they stay the same, but everyone should know shes not the only one to blame. when he heard the words "we think your daughters dead", suddenlt he fell to his kneees as his world flushed with red. as he walked down the hall to make sure it was his angles face, one thing he couldn't do was take the bad things and erase. he couldn't believe his princesses life had been taken, he double checked to make sure he wasn't mistaken. no matter what had happened, he always loved his pumpkin pie, now shes gone, but she'll always be that little twinkle in his eye.
tracy <juliet@aol.com>
bedford, ohio USA - Content-type: text/plain Wed Dec 31 20:19:22 EST 1997

Hi. First time to this page. I have a son who is eight years old. Two years ago my son got Epstein-Barre virus enchephalopathy. Because of the virus going into the brain it caused him to start having seizures. He was in intensive care for five and half weeks, during which time he went into a status epilepticus and we almost lost him. When we left the hospital, finally his neurologist had him on five different medications to control the seizures; One of which was Prednisone. Needless to say because of the steroid my son weighed many more pounds than he had when first admitted. Upon release from the hospital he didn't have another seizure for almost two months and since that time have become almost a continuous weekly thing. I have several questions that I need answered in order to better understand my son and what he is going through. Please, help if you can. These are my questions: First, his mental state seems to have deterioated extremely since leaving the hospital two years ago - to the point that he was tested with a low i.q. in September of this year and now qualifies for SSI. I have asked the neurologist if the ongoing seizures have caused more damage to the brain and she has said no all along, until recently; She now is not sure. Has anyone experienced this?; My second question is this - What happens when a seizure is coming on? I have heard about the "aura" but my son is unable to explain anything to me. He has on occasion faked a seizure, so I know he knows that something different is taking place, but I don't know what happens? Please, help me to become more learned about what my son is experiencing. Thanks. Kym
Kym <BKFriels>
Norman, ok USA - Content-type: text/plain Mon Dec 29 22:38:16 EST 1997

Hi I am writting to to everyone because I have had seizures since the age of 4. Now I am 29 yrs old and I am fully controled under medicine and have not had a seizure in over 3 plus yrs. I was able to get my drivers license last yr. and passed and got myself a car. I LOVE IT!! I had a very hard time when I was young. I always had to ask to be taken someplace and I got very tired of it. Now a days I am searching for a boyfriend and I think I found one and we are dating. Also I am thinking about moving out on my own soon. If there is anyone that wants to talk about their condition to me I am ALL OPEN to ANYONE! Feel free to email me if you can: Sheba123@msn.com Thanks
Cheryl <Sheba123@msn.com>
Pittsburgh, PA USA - Content-type: text/plain Mon Dec 29 09:38:42 EST 1997

Poems link people from all cultures
Sam
Taipei, Taiwan - Content-type: text/plain Sun Dec 28 23:44:30 EST 1997

Poems are a link to people's feelings.
Karma <kara10@webtv.net>
Gilbert, SC USA - Content-type: text/plain Thu Dec 25 16:41:21 EST 1997

THIS IS TO THE PERSON THAT WROTE 'PROM'.THAT IS THE BEST POEM I HAVE EVER READ!OBVIOSLY YOU HAD A HARD TIME IN SOME SITUATION.I'M SORRY.I LOVE TO WRITE POEMS MYSELF ABOUT HOW I'M FEELING.ITS A GREAT WAY TO GET IT ALL OUT.I'VE HAD MY FAIR SHARE OF LIFE TOO.THAT REALLY IS AN AMAZING POEM.PLEASE CONTINUE TO ADD MORE TO THIS WEB-SITE.I ENJOY THEM VERY MUCH.I ENCOURAGE YOU TO KEEP WRITING.ITS A GREAT WAY TO EXPRESS YOURSELF.AND YOU'VE GOT EXTRAORDINAY TALENT.I RECOMEND READING THIS POEM!ITS THE BEST!THANK YOU
ananomous <nomorebs@swbell.net>
spring, TX USA - Content-type: text/plain Sun Dec 21 18:23:06 EST 1997

I like the poem.
Patty <Tweety3378@aol.com>
Tallapoosa, GA USA - Content-type: text/plain Fri Dec 19 00:57:07 EST 1997

I enjoyed the pages. I have had epilepsy since the age of 11 and I am now a 33 year old woman. If you want to call me do so on Jfield@humber.ac.uk and we can chat about education (I have a Masters degree in Psychology and I am studying counselling) or work I have a full time job at the University. So all is not negative. Call me soon.
jane field <jfield@humber.ac.uk>
HULL, ENGLAND - Content-type: text/plain Wed Dec 17 08:07:49 EST 1997

excellent...I enjoyed reading your website
Tym McKamey <tmckamey@bscn.com>
Imboden, AR USA - Content-type: text/plain Mon Dec 15 18:14:00 EST 1997

My heart goes out to you. Life is full of surprises and is so unpredictable. It's no wonder there's so many alcaholics and drug addicts in this world. Too bad we couldn't all find comfort in God without running into religious conflicts and guilts. I think that's why cults are so popular, unfortunately. People are definately in need of peace. Peace be with you....peace be with all of us. Olivia
Olivia
MI USA - Content-type: text/plain Mon Dec 15 15:29:12 EST 1997

i am trying to find online support for my t bi
christopher j dudgeon <cdudgeon@aol.com>
cheaspeake, va USA - Content-type: text/plain Wed Dec 10 00:33:09 EST 1997

Hi, today is my birthday so I am giving myself gifts of friendship by connecting to you. Im new to your page, new to computer but old to Epilepsy for abut forty years. Five years Ago, friek accident at gym. Large metal shower head few off pipe and struck top of my head causing concussion. Life turned upside down as I was living a "normal life" with seizures under control. Symptoms were frightening. Five years later atty withdrew from case and can't find one to take it unless I pay hourly. Have to prove injury but atty for gym's insurance company is using prior condition as their defense. How can I prove it. Can you help because statute is about run out. Any suggestions? I feel very frightened and alone with symptoms still bothering me. Been to three hospitals and still treating. Feeling frustrated, frightened, and helpless as a victim of a "personal injury" that is almost impossible to prove. I will be stuck with all damages without legal representation. Maybe somebody out there has the answer.
Clare Mullin <CAVHM@aol.com>
Sunnyvale, ca USA - Content-type: text/plain Tue Dec 9 02:22:16 EST 1997

Hi, today is my birthday so I am giving myself gifts of friendship by connecting to you. Im new to your page, new to computer but old to Epilepsy for abut forty years. Five years Ago, friek accident at gym. Large metal shower head few off pipe and struck top of my head causing concussion. Life turned upside down as I was living a "normal life" with seizures under control. Symptoms were frightening. Five years later atty withdrew from case and can't find one to take it unless I pay hourly. Have to prove injury but atty for gym's insurance company is using prior condition as their defense. How can I prove it. Can you help because statute is about run out. Any suggestions? I feel very frightened and alone with symptoms still bothering me. Been to three hospitals and still treating. Feeling frustrated, frightened, and helpless as a victim of a "personal injury" that is almost impossible to prove. I will be stuck with all damages without legal representation. Maybe somebody out there has the answer.
Clare Mullin <CAVHM@aol.com>
Sunnyvale, ca USA - Content-type: text/plain Tue Dec 9 02:20:20 EST 1997

Im new to your page, new to computer but old to Epilepsy for abut forty years. Five years Ago, friek accident at gym. Large metal shower head few off pipe and struck top of my head causing concussion. Life turned upside down as I was living a "normal life" with seizures under control. Symptoms were frightening. Five years later atty withdrew from case and can't find one to take it unless I pay hourly. Have to prove injury but atty for gym's insurance company is using prior condition as their defense. How can I prove it. Can you help because statute is about run out. Any suggestions? I feel very frightened and alone with symptoms still bothering me. Been to three hospitals and still treating. Feeling very frustrated as you can imagine.
Clare Mullin <CAVHM@aol.com>
Sunnyvale, ca USA - Content-type: text/plain Tue Dec 9 02:14:52 EST 1997

Im new to your page, new to computer but old to Epilepsy for abut forty years. Five years Ago, friek accident at gym. Large metal shower head few off pipe and struck top of my head causing concussion. Life turned upside down as I was living a "normal life" with seizures under control. Symptoms were frightening. Five years later atty withdrew from case and can't find one to take it unless I pay hourly. Have to prove injury but atty for gym's insurance company is using prior condition as their defense. How can I prove it. Can you help because statute is about run out. Any suggestions? I feel very frightened and alone with symptoms still bothering me. Been to three hospitals and still treating. Feeling very frustrated as you can imagine.
Clare Mullin <CAVHM@aol.com>
Sunnyvale, ca USA - Content-type: text/plain Tue Dec 9 02:13:06 EST 1997

Deb, there was one thing I did forget in my previous entry. And that is Life is most unfair When you've been kicked in the teeth and have no-one you can turn to who won't say, well you did ask for it. When all you want is to feel sorry for yourself and to cry - because no-one else is going to - Life kicks you as well. Because Life throws up someone else - right where you can't help but see them - someone else who is worse off than you. If you can get some comfort from that, that there is always someone else worse off than you, then you've begun the healing process. And the pain will start to go. But I think it most unfair all the same. Can't even wallow in self pity. Chris
Christopher F Watson <cfwatson@cobweb.com.au>
Reynella, SA Australia - Content-type: text/plain Mon Dec 8 09:50:32 EST 1997

Thank you Deb. It doesn't lighten the load knowing that a great many men and women epileptics have, throughout history, contributed to the advancement of their respective peoples. It's not easy to gain solace from that. I had a motor bike accident when I was 19; being very silly; riding without a helmet, and to add insult to injury no licence either. But I DID have a brand new 250 dirt bike. A police patrol drove past, saw me, turned and came after me and being a typical teenager I took off. Going around a corner I clipped the rear of a car and the bike and I parted company and I ended up using my head as a breaking device. After being cleaned up at the hospital I was thrown in the cells, bailed out by one very pissed off Dad, copped about $300 in fines and costs, three traffic offences and within six months my very first grand mal epileptic fit. I couldn't see any good in that; I felt that I was being punished. Everyone who knew that I'd had a fit was now very wary of me; was I going to do it again? When? Should I be allowed out in public? That was 20 years ago and I'm just as selfish now as I was then. Perhaps I'm a little more resigned to it but that's all. After all these years I'm still single and part of the reason are the public myths surrounding epilepsy. None of my girlfriends have ever said that my epilepsy was an issue. But 2 of the last 5 ex-girlfriends never gave any sort of an answer to why we broke up. Perhaps I'm just paranoid. I'm very independant-minded. I'm told I shouldn't live alone: well, I've got used to it. I'm told I shouldn't consider any sort of back-packing holiday - because something might happen. But 'something' might happen to anybody. Anytime. I refuse to be dictated to; by people or by my health. Within some reason. I skipped through the entries and what I saw and read didn't describe any sort of warning they might get. Well my warning starts with a vaguely familiar, but strange, feeling. I get a sort of low key buzzing in the ears which resolves itself into a female chorus chanting or reciting and over them is one distinct female voice but before I can identify what she is reciting or singing I lose consciousness. I also empty my bladder. I have been laughed at by (or smirked at) by GP's and Neurologists when I describe this warning I get. I'm glad they find it amusing. I wouldn't wish any disease or affliction on anyone; but if I knew of a Neurologist and/or GP who was an epileptic then I'd go to them. All those I've seen so far are very short on empathy. Well, it's not all doom and gloom; over the last 15 years I have developed my writing skills and am busy collecting reject slips for a dozen childrens stories and two full length novels whilst working on several more full scale projects. I wish you and all who come here happiness, health and prosperity - in that order. Chris
Christopher F Watson <cfwatson@cobweb.com.au>
Reynella, SA Australia - Content-type: text/plain Mon Dec 8 09:08:41 EST 1997

I have had seizures since I had high fevers (6 months and 9 months old) from having Flu and pneumonia. They were petite and now they are grand mal. I am 41 now and I would be intested in knowing more and hearing from others that may have gone through the same. Thank you for this site!
Craig Watts <SusieQ997@aol.com (My Mom's)>
Fair Oaks, CA USA - Content-type: text/plain Sat Dec 6 16:05:44 EST 1997

I have had seizures since I had high fevers (6 months and 9 months old) from having Flu and pneumonia. They were petite and now they are grand mal. I am 41 now and I would be intested in knowing more and hearing from others that may have gone through the same. Thank you for this site!
Craig Watts <SusieQ997@aol.com (My Mom's)>
Fair Oaks, CA USA - Content-type: text/plain Sat Dec 6 16:04:15 EST 1997

Thanks for putting all of te data together in one place
Tom Temple <Ttemplejr@aol.com>
Houston, , Tx USA - Content-type: text/plain Fri Dec 5 15:24:02 EST 1997

Debbie, I'm glad I ran accross your page again when cleaning up my email account. It's been a wonderful experience getting to know your this semester. I think you are doing wonderfully! It's amazing how much people don't know about things like brain injury and other neurological problems. I support you with my prayers and concern. People just need to wake up and notice that life is not all peaches and cream for everyone. I will be an understanding friend. I watched as Summer held your hand during a seizure one day in the band room. I believe it was a valuable learning experience for the other moms and colorguard who were there that day. Please let me know if there is anything I can do for you. I MEAN IT! Do not hesitate to call. I like you and I really do like Summer. I know she is a wonderful daughter and loves you very much. I just wish I knew how to help her. Gotta get back to work, but wanted you to know I think you're very very special. Bye Ya'll!
Gail Kemp <gmkemp@samford.edu>
Birmingham, AL USA - Content-type: text/plain Wed Dec 3 10:58:57 EST 1997

PLEASE CONTACT ME
SCOTT C. ANDREWS <SCOTTSCW@.COM.>
PALATINE, IL USA - Content-type: text/plain Tue Dec 2 05:29:37 EST 1997

Head Injury's are no fun,in 1979 I received a Head Injury from a Industrial accident,several month's later I began to Hallucinate and Dry Hieve terribly.I then began to see doctor's who could find no reason for this,then in 1988 I then took a Gran-mal siezure on the job and fell back and struck my head again and had a second Head Injury with a Subdural Hematoma.Now in 1990 I began to get some answer's,the nearly 10 yrs I was Hallucinating and Dry Hieving,I was taking Complex Partial Siezure's.Doctor's now have estimated I took over 30,000 of these siezure's during that period.That was a very terrible decade in my life starting at age 21,what a life,I have not worked since the second Head Injury in 1988 for many reason's,physical and emotional,there are simply no word's to explain it.
Blaine Stanziana <Bstanziana@aol.com>
Pgh, Pa USA - Content-type: text/plain Tue Dec 2 01:30:31 EST 1997

My father fell off a 5 foot high platform at work 6 months ago. He suffered Traumatic Brain Injury and was hospitalized for 2 months. I am having trouble supporting him and the rest of my family and this page has helped me tremendously. I never knew there were so many cases of this kind; it was all knew to me. If anyone needs a friend to talk to email me anytime.
Cheryl greenberg <greenbe3@tcnj.edu>
Staten Island, NY USA - Content-type: text/plain Mon Dec 1 21:53:17 EST 1997

i'm doing a report on epilepsy and this is helping, thanx
leilani lafaurie <lei1370@aol.com>
diamond bar, ca USA - Content-type: text/plain Mon Dec 1 20:12:42 EST 1997

IN i982 I was diagoised with Epepilepsy,due to abuse. I get frustrated with all the tests, all the different medications and not knowing how it will all turn out. I am trying to look for a chat room,as i am alone alot, and when i have a sezure,..temperal lobe,..or gran mal,..it would be nice , to find a special neuro /epsy, chat room, for special people,...as only WE would truly understand each others pain. if anyone reads this,.. and knows of a chat room, PLEASE,E-mail me, and tell me. thank you, Sherry Lee ....*
Sherry Lee <aardvark@redrose.net>
Lancaster, PA USA - Content-type: text/plain Sun Nov 30 14:16:00 EST 1997

I'm not really sure what to say. Eight years ago I had a massive head injury followed by a grand mal seizure. Two weeks ago I had another seizure and am back at the neurologist as he begins more and more tests. The most frustrating component of a head injury is that noone else can see the injury. How do you get your friends to understand. The medication makes me dizzy, nauseas and pretty much useless. I am a 26 year old college student, delayed by the accident, wanting to get on with my life. I did not know that such web pages existed until I started to do more research on my comdition. It is nice to know that there are people out there who understand the injury, even though they can not see it. Thanks
Moira Stoddart <RICHMOI@AOL>COM>
State College, PA USA - Content-type: text/plain Sat Nov 29 16:08:50 EST 1997

My son Michael was 5 months old when he had his first Seziure. That was the worst day of my life. I'll never forget watching my little boy's eyes roll back into his head and seeing this little boy shake violently. I could do nothing for except watch him do this. After it was over the doctor's told me that he had Epilepsy. That word is so overwelming and scary. Being a single mom I am dealing with this alone. But then I found your Page and I have learned more from this page than from any Doctor or specialist. I JUST WANT TO SAY THANK YOU FOR THE INFORMATION AND HELP. YOU'VE BEEN A SIGH OF RELIEF FOR SOMEBODY WHO FELT ALONE AND SCARED. TRICIA MONTEZ
Tricia Montez <Im22sexxy @ Aol. Com>
Oxnard, CA USA - Content-type: text/plain Thu Nov 27 16:23:39 EST 1997

I enjoyed the Poem very much.
Andrew <ansuje@eon.net>
Edmonton, ab Canada - Content-type: text/plain Wed Nov 26 22:17:27 EST 1997

Ijust found this site and I am crying now from reading the poems.Brain monster! My son has a refractory seizure disorder since 2 months> He is 11 years oldnow. Tried everthing and nothing has worked. Want to talk with parents in the same situation.
Colleen <sara@penn.com>
USA - Content-type: text/plain Tue Nov 25 19:25:37 EST 1997

Hi. I am Sam's mother. I wanted to tell you that your poems are very touching and helpful. As the mother of a TBI child, it helps me to understand what my son is going through, but sometimes can't express. You are a wonderful person and are providing families with great insight and warmth. You should be very proud of what you have accomplished.
Mary Taylor
USA - Content-type: text/plain Sun Nov 23 14:56:21 EST 1997

HI I SUFFER FROM A TBI. IWAS IN A LITTLE GEO AND WENT THROUGH THE WINDSHEILD. I DO NOT REMEMBER THE WRECK ITSELF BUT I DO REMEMBER WAKING UP IN THE HOSPITAL SCARED OUT OF MY MIND. TO THIS DAY I TAKE TEGRETOL, DILANTIN. AND PHEMABARBATOL. I TAKE MEDS 5 TIMES A DAY AND I HAVE NO DRIVERS LICENCES SO I GET PRETTY DEPRESSED SOMETIMES, BUT I NOW HAVE A VERY LOVING BOYFRIEND THAT I LIVE WITH AND 3 KIDS. I THOUGHT I WOULD NEVER FIND SOMEONE WHO WOULD WANT A PERSON WITH A CONDITION LIKE MINE, BUT TO MY SURPRISE HE DOES WANT ME AND HE LOVES ME VERY MUCH AND I HIM. THANK YOU SO MUCH FOR HAVEING THIS PAGE IT REALY HELPS ALOT TO KNOW IT IS OUT HERE FOR PEOPLE TO READ AND UNDERSTAND MORE ABOUT OUR CONDITION. THANK YOU SHELLEY
Shelley <TheBrain007@yahoo.com>
Chandler, OK USA - Content-type: text/plain Sat Nov 22 03:32:00 EST 1997

Great Page! I think you need more on Juvinail Epilepsy
Kate Rowe <cutiepie_17@hotmail.com>
Melbourne, Victoria Australia - Content-type: text/plain Thu Nov 20 21:37:59 EST 1997

Your poems and stories are very inspirational. I enjoy reading them and they really make me think. I really enjoy prom. I relate to it because two of my close friends have been killed by drunk drivers, and a lot of my friends drive drunk. I really enjoyed all of them.
Amanda McCarthy <swkr29a@prodigy.com>
Indpls, IN USA - Content-type: text/plain Tue Nov 18 19:52:52 EST 1997

On Sept 18,1996 I got in a bad accident on a 4 wheeler. I got hit head on by a Dodge Ram Pick up truck. Now I have brain damage. Usually I forget words. Now sometimes I get very angry and sometimes I really get rage. But now I am doing better than I was in the hospital. At school sometimes people pick on me. That makes me very angry. When I do my work, I get really mad because I don't know what to do and I ask for help, but nobody really helps me. That makes me mad and sad. Because of that, I might quit school and get taught at home by my mother.
sam spencer taylor
USA - Content-type: text/plain Mon Nov 17 22:27:08 EST 1997

Penetrating You see through to the core of what is important. A really good experience Debbie. Keep it up. Sam
Sam Brewer <brewer@iafrica.com>
Durban, South Africa - Content-type: text/plain Mon Nov 17 04:16:13 EST 1997

This looks like a wonderful page, my brother had a head injury nearly 4 years ago and it is still too painful to read a lot of your experiences. I have poems back in my dorm room, I will submit to share with everyone at some point. Best of luck to everyone. I admire all of your courage. Stay Stong and let's share with each other.
Linda Offenhartz <linda30@wharton.upenn.edu>
Philadelphia, PA USA - Content-type: text/plain Sun Nov 16 14:57:25 EST 1997

Hi, I come to your page via a post you sent to the Advocacy listserv. I feel you have done a fine job with your page. I'm a stroke survivor. I have suffered sezuires due to the resulting brain damage. Luckily they have been under control for some time now. Goodbye. Doug, N0LKK
Doug Younker <dougy@ruraltel.net>
Plainville, KS USA - Content-type: text/plain Thu Nov 13 17:19:08 EST 1997

I'm 19 yrs. old and I've had epilepsy for about 7 yrs. People thought I was a freak after having a seizure, and it was embarrassing. But after reading the guestbbok, it just proves to others without epilepsy that those with it just MIGHT could do things that they are doing. I, myself, still have to take medication and watch myself a lot through the tough times, but I just try to remind myself that I can and will beat this. And that is exactly what all epilepsy victims NEED to tell themselves. We (victims) may be disabled, but in a way it could be an honor. That way, we could teach others of our experiences.
Marissa Hernandez
Borger, TX USA - Content-type: text/plain Thu Nov 13 12:59:09 EST 1997

Your website is really great. I was in an auto accident in Oct 1996 with an initial diagnosis of "mild concussion" back to work in three days. Well, one year later, a wonderful neurologist, tests, medications, physical therapy, etc. I sustained a TBI with a diagnosis of Post Concussion Syndrome and after 11 months of trying to recover, with set back after set back, a diagnosis of Temporal Lobe Epilelpsy. My seizures are complex partial and so far I am responding to Teretol XR, if I could just stay awake and not develop an allergic reaction as I have done with many of the other meds. I found your site looking for help with epilepsy. Thank you for your site and your wonderful poetry.
Sandra Shampang <skshampang@juno.com>
Willsboro, NY USA - Content-type: text/plain Wed Nov 12 17:36:12 EST 1997

I too am a survivor of TBI. March of 1988 I was in a car accident. When the ambulance arived I was not breathing. The doctors estimate my brain was without oxygen for at least 1/2 hour. Due to lack of oxgen the Right Temperol Lobe of my brain had been damaged. This led to Memory Loss, and Siezures. It was as if my life did a 360 degree turn around. I went from a straight A student with many full ride college scholorships to a woman that couldn't even remember what she had for breakfast. My siezures have never been completely controlled. I received Brain Surgery in 1990, but only 90 percent of the area could be removed. The hardest part of this whole journey hasn't been the siezures though, it has been coming to terms with the fact that I am disabled. I have learned ways to help compensate for the Memory Loss. I carry a Apointment Book with me wherever I go. I also taught myself Sign Language to help me remember. Also those little sticky note pads work great!
Stacy Pankuch <pankuch@micron.com>
Mountain Home, ID USA - Content-type: text/plain Sat Nov 8 16:47:56 EST 1997

I REALLY ENJOYED YOUR POEM. IT REALLY TOUCHED MY HEART. I WONDER HOW PEOPLE WHO ARE ACTUALLY SUFFERING FROM EPILEPSY FEEL. IT MUST BE DREADFULL NOT KNOWING WHEN A SEIZURE MAY STRIKE. MAY GOD BLESS THEM ALL.
AZRA KHAN <e0fwjt8w.w>
mississauga, on canada - Content-type: text/plain Sat Nov 8 13:32:28 EST 1997

THE POEMS/STORIES ARE OPENING NEW PASSSAGES INTO MY LIFE - THAKYOU
NA <NA>
SAN ANTONIO, TX USA - Content-type: text/plain Fri Nov 7 23:24:57 EST 1997

Poem was great, expressed how it is on all these damn meds. May we all soon have an answer to our prayers, my best to all.
Johnny <JRBnTEX>
Tx USA - Content-type: text/plain Fri Nov 7 08:19:02 EST 1997

It was long ago when I was a little boy, just watching the world in front of me with happiness, knowing that I thought the greatest part of my life was living with a family who I thought I once loved. Until one fatal day my parents went to the point where they were having their differences which at a young age I could not understand, so they decided to get a divorce. I could not understand that either at the young age I once was. Until one fatal day my parents had put me in the middle of things that they did not realize what they were putting me through, when all they could do was yell and scream at me about what they felt about one or the other. They did not see the torment they had put me through. So I decided to commit suicide by sniffing toxic fumes from spray paint and gasoline and I kept going at it for years and years until we had to move from my home state of Minnesota down to Texas, knowing that my mother and her new found husband was chased out of town because of her problems of not being accepted by some other members of my family, such as grandfathers and grandmothers, aunt's and uncles, and any family orientated persons of our family. So once we have gotten down to Texas I have turned towards to illegal drugs and alchohol and anything else I can think of, since I was living the life of unacceptance, because my mother's new found husband had put me through so much mental and physical abuse, that the stress of it all was becoming unbearable. I was about to be ready to explode, I was hoping death would take me right there and then. I had a hard time focusing on my school work and the homework that was given to me by my schools I attended. I became rebelious to the world and to what ever my so-called God had given me in life, I have asked my self what was the purpose of living if I am to be given the life I didn't think was healthy for me. It had felt if it was me against the world, because reality didn't make life itself something that was worth living. My brain was going through a lot of unbearable pressure from the things I have witnessed, that I shouldn't have, Then one day I fell out of a very high branch from a tree, falling with fear but also hoping that it would have been the end of my life that day. Before all this was going on, I have remember that I had a lot of head related injuries from when I was 6 years old, all the way up to the fall I was having from the tree I fell off of. A few weeks later I had the most peculiar feeling coming from my brain, then my head for some reason turned towards to the left as if it wanted to keep going and going, I had no control over it ( it was a Gran Mal siezure). I didn't know what it was at the time that I had, I was living in fear knowing that I had it. Think once my family had found out, I would no longer be accepted because not very many people in my family had any disabilities, I think I became the 1st one to meet up with this encounter. A few weeks later down the road me and my oldest brother was going to a friends house to pick up a quarter ounce of marijuana, until I realized it I had another Gran Mal siezure and this time it was right in front of a family member, and I was rushed to the hospital to get a diagnostic on what it was that I was having. It was called a siezure disorder, then my mother started to look at me like if she was asking herself, "what have I done to my son?" Well she started to wake up and smell the coffee and so was I. So I began to clean my act up by quitting the illegal drugs and alchohol, and started to clean my act up a little, at that time I met up with the new meaning of fear....... Now I'm 31 years old and I'm doing better with myself, I am now taking medication for my Gran Mals which are under control but I still facing Petit Mals. I still survive........
Tony Vogel <WolvenKing@aol.com>
Duluth, Mn USA - Content-type: text/plain Fri Nov 7 06:41:16 EST 1997

Thank you for this site. My step father was in a car accident and suffered a closed head injury, he has been institutionalized since it has been tough for my family. I found the resources on this page helpful since i am getting ready to make a mojor presentation on brain injury thanks BT<><
Beaver B. Trumble <beavert@juno.com>
Lancaster, Pa USA - Content-type: text/plain Wed Nov 5 20:23:29 EST 1997

I suffered a mild TBI seven years ago. I am still attempting to come to terms with the changes it it created in my life, both professionally and personnally. I am glad there a sites like yours out there. Now I don't feel quite as alone.
Robert Pettis <pettisr@software.hill.af.mil>
Sunset, UT USA - Content-type: text/plain Tue Nov 4 18:22:43 EST 1997

My good friend husband was dianosed with a brain tumor, the next day he had a 6 hour operation, they were able to remove the tumor. Fluid was building up in his head so 8 days later they put in a shunt. Is there a person, support group, a family that has gone through something like this, that maybe offer advice, support etc.... unfortuntly they are not online but I am, and I will be there all the way to support my friend her husband and her family with help from you out there.......
Pat <bayk@aol.com>
Seattle, Wa USA - Content-type: text/plain Mon Nov 3 23:37:04 EST 1997

My good friend husbaand was dianosed with a brain tumor, the next day he had a 6hour operation, theey were abble to remove the tumor. Fkuid was building up in his head so 8 days later they put in a shunt. Is there a person, support group, a family that has gone through something like this, that maybe offer advice, support etc.... unfortuntly they are not online but I am, and I will be there all the way to support my friend her husband and her family with help from you out there.......
Pat <bayk@aol.com>
Seattle, Wa USA - Content-type: text/plain Mon Nov 3 23:35:45 EST 1997

My friend husband just had a brain tumor a week ago, becaused the fluid in his brain was increasing they needed to put a shunt in his head, what I'm looking for is a friend a family a person who she could talk to when she is ready to seek help and support, I'm afriad it's going to be a challenge for the family, I know for the friends it is.
Pat K <bayk@aol.com>
seattle, wa USA - Content-type: text/plain Mon Nov 3 23:26:48 EST 1997

I am a case manager for a non profit assiciation which works with people with epilepsy. Always looking for good information and better understanding. Thanks.
Judy Shipman <judy@supernet.com>
USA - Content-type: text/plain Sun Nov 2 16:36:27 EST 1997

Life Realy sucks a bi one!
Charity carlson <WWW.charity.com>
sioux falls, sd USA - Content-type: text/plain Sun Nov 2 03:46:13 EST 1997

I work with individuals with TBI and really appreciate the additional information that I have read on your page, again thank you.
Bill & Penny Pelkey <wild bill @ mint . com>
Augusta, me USA - Content-type: text/plain Thu Oct 30 09:17:57 EST 1997

beautiful poems filled with such feeling. I love the one called "BUT I TRIED" it is how I feel so much of the time .
CAROLL <ONEDERWIFE @aol.com>
il USA - Content-type: text/plain Tue Oct 28 09:56:06 EST 1997

I had epilepsy as a child but grew out of it, I never really knew much about it but now that i am older I am finally starting to do some research on it and learn more about the condition i had as a child. I just wish that my parents had this much information when i was younger so i would have been able to know more about why things were happining and what they ment.
Amanda May <MANDY10000>
FT. WAYNE, IN USA - Content-type: text/plain Sun Oct 26 23:32:27 EST 1997

Please feel free to e-mail with any pertinent information regarding TBI as I am a survivor as well as a professional in the field. Tony
Tony D. Cochren <Cochretd@miamiu.muohio.edu>
Oxford, OH USA - Content-type: text/plain Fri Oct 24 19:57:13 EDT 1997

Please chekc out my 2 sites reguarding..children...i enjoyed all your links and sites...indeed we all need some ~HOPE~
Barbara <BPINKSTER2@AOL.COM>
orlando, fl USA - Content-type: text/plain Wed Oct 22 09:56:37 EDT 1997

All I can say is lets pray more and bask in the grace of the Lord ... God Bless, Anil Shekhar
Anil Shekhar <ASHEKHAR@us.oracle.com>
Santa Clara, CA USA - Content-type: text/plain Tue Oct 21 15:57:15 EDT 1997

as i sit here on a vardy dark lonely night i haveno one i can realy call friend in may of 1994 i had a car accident that caused a stroke which now i have sizures i walk alone you do have a nice site no one cares if i am here are not i wondrer why i am not taken in the accident why i am here i ask my self and not in a beter place are am i gone and this is my hell
chris dudgeon <cdudgeon@aol.com>
cheaspeake, va USA - Content-type: text/plain Tue Oct 21 04:25:39 EDT 1997

Thanks for the web sight. I am 25 and have had siezures since birth. I had temper tantrums and the why me, God? questions but, have accepted my condition. I am happy to see that I am not the only one who looks for a place to talk to others like me. Someday there will be a cure for everyone with epilepsy, brain injuries, or any other condition. we just have to keep pushing for money for research to look for the answer. Keep your chin up and do your best.
Lisa <lisa@sccoast.net>
USA - Content-type: text/plain Sun Oct 19 18:11:26 EDT 1997

on november 15 my best friend was in a car accident where another driver ran a stop sign at nearly 60 mph hitting her car directly where she was sitting in the passanger front seat Megan was the first person to be removed from the scene she was taken to strong memorial hospital in rochester ny while their and receiving her intial treatment her heart stoped for an unknown amoutn of time while receiving a ct scan megan was in picu for a month before being moved to another hospital on christmas eve she was at ST.Marys hospital Brain Injury unit from then until august 19 1997 on that day megan was flown to the chicago institute of rehabilitaion for therapys until october 26 she is now home but has not emerged from her coma and the aniversary date of the accident is approaching fast this whole situation has created many problems in my life the one that upsets me the most is that i drove thru the accident scene and looked directly at the mangled cars and friends and didnt even stop i didnt find out that it was her until some one told me who the driver was and i rushed back to the scene to be stopped by several adults who know me and also megan these people sent me back to where i had been moments before with assurance that she had been just banged up and was goingto get checked out after after leaving the soccer game that we where all going to i was alerted to how serious megan's condition had become i wish during this time that it could be me in her postion now because meg never deserved this i love her so much and miss hearing her voice that i probably will never hear again except on videos we have made the part that also kills me is that the person who did this made it thru this with minimal injury i wish all of this could end meg i love you
shawn <sowen@wvu.edu>
fairport, ny USA - Content-type: text/plain Sun Oct 19 15:21:03 EDT 1997

Very heart-felt and genuine. Thank you for posting something of such warmth and compassion. These kinds of things are needed in this world.
Andy <ABSTARZ@aol.com>
Arvada, CO USA - Content-type: text/plain Sun Oct 19 13:53:23 EDT 1997

I AM A SURVIVOR OF A TBI AND TRY TO COPE WITH THE PROBLEM. IT IS HARD TO DEAL WITH AND TRY TO EXPLAIN TO OTHERS HOW YOU FEEL. I KEEP ON TRYING AND SOMETIME JUST WANT TO GIVE UP BECAUSE THERE ARE TIMES I CAN'T COMMUNICATE MY FEELINGS OR NECESSITIES
BRAD SCAROLA <RABBIT1742@AOL.COM>
PALM BAY, FL USA - Content-type: text/plain Fri Oct 17 17:01:06 EDT 1997

Hi. I'm a frustrated mother of an 11 year old. My daughter had a seizure three weeks ago. She had a bike accident 6/97 and hit her head on a concrete sidewalk not wearing a helmet. I cannot get the doctors to tell me anything. They are even reluctant to call what she had a seizure as her CT and EEG were normal. Is the only thing for me to do at this point "wait and see" as the doctors suggest? I'd love to hear from someone with a similar experience.
Bev <Woodie2B@aol.com>
MD USA - Content-type: text/plain Fri Oct 17 13:25:27 EDT 1997

Debbie- It has certainly been my pleasure to meet and get to know you as your attorney and friend. Tell Chris not to worry about E-mailing me about this page- I found it!Kevin
Kevin Hays <umplaw@aol.com>
Pelham, AL USA - Content-type: text/plain Thu Aug 28 18:07:16 EDT 1997

I'm the outreach director for the epilepsy Center south central thatserves six counties in Wisconsin. Having spent two years ofmy military career in Hawaii, I was very interested in seeingthe type of programs you have in the Pacific. Five of our sixcounties are relatively low populations and it is difficultto maintain support groups and services when the population is sometimes sparse and many that would like to take part havetransportation problems. I would be interested in learninghow issues of this sort are addressed in various parts of thecountry.
don snyder <dsnyder@juno.com>
madison, wi USA - Content-type: text/plain Mon Aug 11 22:29:46 EDT 1997

Chris and DebbieJust visited your Website. Nice job.Bruce
bruce Simms <bsimms@nlnet.nf.ca>
st.John's, nf Canada - Content-type: text/plain Sat May 31 13:51:42 EDT 1997

Nice web page and very informative
Dan Fleury <stevew@planeteer.com>
Ajax Ontario, Canada - Content-type: text/plain Tue Feb 4 02:18:49 EST 1997

I love this page. I am still very new to this "WEB" thing, please be patient with my goofy mistakes. I have attempted to exchange correspondence with a few fellow TBI's.. hope I did it right, I am 29 years old, suffered my trauma in April of 1995. I went through rehab at a fantastic hospital.. as most of my fellow TBI's know, therapy of any kind was torture back then . I look back now and realize how all those hours of reviewing my alphabet ,numbers, days, and names , as well as those hours of screaming to straighten my limp arm and leg were very important and the best treatment I could've received. I am glad to be here and so pleased that there are people out there who care and know. I'm not alone . Write me..stuartt@earthlink.net. Melissa
Melissa Forcade <stuartt @ earthlink.net>
Austin, TX USA - Content-type: text/plain Tue Jan 14 13:55:36 EST 1997

Feb 8 1985. A day I will never remember and a day I will never forget.Like most severe head injury victims, I have no memories of the incident, but the years of medical care are crystal clear.That Friday, the roads were covered with snow and ice. The temperature was a bone chilling 8 degrees, but a careless driver was travelling 40 miles per hour and skidded across a raised median to hit my car head-on.I then spent a month in a coma, five months in two hospitals, a year in outpatient cognitive therapy and two and a half years out of work.I gradually succeeded in restoring most cognitive and physical skills, returning to a happy and productive lifestyle. But I can't let go and will never forget.I've always got a thirst for more information on head injuries--primarily prevention--and am willing to share whatever I find out. Just drop me a note.brains86@injersey.comDAVID LIPSKY
David Lipsky <brains86@injersey.com>
East Brunswick, NJ USA - Content-type: text/plain Fri Dec 6 15:33:05 EST 1996

i am a biology major at carthage college, and i am doinga research paper on epilepsy. in addition to that, ihave epilepsy.
ruyayeem rashid <rashid1@carthage.edu>
kenosha, wi USA - Content-type: text/plain Mon Nov 4 13:44:26 EST 1996

I am a person with brain injury who is beginning to networkwith others on the Internet. I am particularly interestedin memory and organization strategies, as well as mailinglists. Kathy
Kathy Moeller <teachers@brainbook.com>
Medford, OR USA - Content-type: text/plain Sat Nov 2 13:13:23 EST 1996

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USA - Content-type: text/plain Fri Sep 13 03:15:37 EDT 1996

I AM SO GLAD TO FIND MATERIAL ABOUT EPILEPSY.
RAY A. MAYER <ram49@dpc.net>
PEKIN, IL USA - Content-type: text/plain Wed Oct 15 18:28:23 EDT 1997

Dear Debbie: Your poem "Something's Wrong" really hit home.I have had epilepsy and have been medicated since birth, but when my seziures increased and became more severe, the doctors said, "it's in your head." I now take neurontin and dilantin--I still have seziures, but at least I can get out of bed. Thank you for sharing your poems with the world. In peace, Julianne 39 yrs. old.
Julianne <julabug@unm.edu>
Albuquerque, NM USA - Content-type: text/plain Wed Oct 15 08:30:51 EDT 1997

Your page is very informative. A very good friend of mine was killed in a car accident when we were 16 do to brain injuries.Now, five years later, my very best friend since we were in 3rd grade was in a accident. She was critically injured and still, 6 months later, suffers from memory loss. It is so hard to find people to understand what it feels like when someone you love so much suffers from TBI. Your page is excellent!
Nikki <s002nrh@discover.wright.edu>
OH USA - Content-type: text/plain Mon Oct 13 12:57:26 EDT 1997

Your page is very informative. Avery good friend of mine was killed in a car accident when we were 16 do to brain injuries.Now, five years later, my very best friend since we were in 3rd grade was in a accident. She was critically injured and still, 6 months later, suffers from memory loss. It is so hard to find people to understand what it feels like when someone you love so much suffers from TBI. Your page is excellent!
Nikki <s002nrh@discover.wright.edu>
OH USA - Content-type: text/plain Mon Oct 13 12:55:36 EDT 1997

That address is CandyApRd@aol.com I'll be loading my home page this week so if anyone would like the link email me. The subjects of my work are love, religion, under the influence and many others.
Alexandra Turner
USA - Content-type: text/plain Thu Oct 9 10:13:58 EDT 1997

I thought your poem called Abuse was extremely well written. I hope to enjoy more as I have time to surf. Drop me a few lines some time and I'd be glad to swap some stuff with you. And that goes for anyone else who reads this.
Alexandra Turner <CandyApRd>
DC USA - Content-type: text/plain Thu Oct 9 10:12:15 EDT 1997

My daughter Gabriela (3 1/2) is a TBI survivor (post 2 yrs) and we are looking for as much support, insight, and help that we can find.Gabriela was dropped on her head by her babysitter when she was 10mos. She suffered a subdural hematoma on the left side. She spent 3wks in PICU and 1wk in PEDS. Her survival chances were low and post surgery she survived 2 strokes and several grand mal seizures. She had a portion of the left side of her brain removed and has scar tissue all over her brain due to the fall. She suffers from seizures, partial vision loss, partial hearing loss, hemiparalysis, memory loss, and fine motor loss, and lastly delayed (not sure how much) learning. If anyone has any advise, help, support or suggestions please contact me.
Judy <jnigro@suth.com>
E Rochester, NY USA - Content-type: text/plain Wed Oct 8 13:58:35 EDT 1997

I just found your page and I think it will help my wife (suffers fom epilepsy and short term memory loss from them)to understand what happened to her and how to cope with it.Is it that rare that it first occurs over age 40? I was toldthat it's rare but it happens. How many times?Thank you
Duane Steele <Sawbuck3@juno.com>
Hamilton, Oh USA - Content-type: text/plain Tue Oct 7 22:19:27 EDT 1997

HII am a survivor of a Brain Injury April 21 1989.I am trying my hardest to put our Head Injury Association back together but it is hard. Ihave not had experiencein taking on such a task, so yes it is hard.
Fred Welling <fred.welling@sympatico.ca>
Kingston, On Canada - Content-type: text/plain Tue Oct 7 00:05:50 EDT 1997

HII am a survivor of a Brain Injury April 21 1989.I am trying my hardest to put our Head Injury Association back together but it is hard. Ihave not had experiencein taking on such a task, so yes it is hard.
Fred Welling <fred.welling@sympatico.ca>
Kingston, On Canada - Content-type: text/plain Tue Oct 7 00:05:05 EDT 1997

I find your page to be very useful. One thing that would be very helpful would be if you added the date last revisedto the bottom of your list of epilepsy links. Thank you forcollecting all these sites!
Tracy Stewart <tracy.stewart@medlib.com>
Edmonton, AB Canada - Content-type: text/plain Mon Oct 6 20:28:08 EDT 1997

HELLO!I HAVE JUST DISCOVERED THIS PAGE. FOR ME, IT´S A MARVELLOUSTHING READING YOUR PERSONAL STORIES. I FELT THE MORE MISFORTUNED WOMAN IN THE WORLD, AND NOW, I KNOW THAT I'MA WOMAN WITH A LOT OF LUCK. I STARTED HAVING SEIZURES WHEN I WAS 6 MONTHS- TONIC-CLONIC SEIZURES-. MY FATHER SAID TO ME THATI SHOULDN'T SAY ANYTHING ABOUT MY ILLNESS TO ANYOME. BUT I HAVE LUCK, BECAUSE I'M HAVING LAMICTAL (LAMOTRIGINE) AND WITH THIS TREATMENT, I NAVE NEVER SEIZURES.AT THIS MOMENT, I'M TRYING TO MAKE AN EPILEPTICS´S ASSOCIATION.I'M WORKING ON THIS WITH A WOMAN THAT HAS A LITTLE GIRL WITHA SERIOUS EPILEPSY. HER MOTHER IS DESPERATE BECAUSE SHEIS VERY, VERY DEPRESSED. IN SPAIN, THERE ISN'T ANYONE WHO CARES ABOUT EPILEPSY. EPILEPTICS ARE VERY BAD-CONSIDERETED AND A LOT OF PEOPLE HAS FEAR OF US ANDA LOT OF EPILEPTICS ARE MADE REDUNDANT BECAUSE OF THEIRILLNESS. THERE ARE NO FOUNDATIONS, NOR ASSOCIATIONS...ANYTHING. EVEN SOME NEUROLOGISTS KNOW VERY LITTLE ABOUTEPILEPSY. IT'S TERRIBLE. PLEASE, WRITE TO ME. I HAVEN´TELECTRONIC-MAIL, SO IF YOU SHOULD WRITE TO ME BY REGULAR-MAILI WOULD BE VERY HAPPY. SORRY ABOUT MY ENGLISH. I WILL TRY TO WRITEMAKE IT BETTER NEXT TIME.A LOT OF KISSES FROM BARCELONA (SPAIN)MARISOL NEIRA- C/ CLOT, 214, LEFT - BARCELONA-SPAIN
MARISOL <I DON'T HAVE IT>
BARCELONA, SPAIN - Content-type: text/plain Mon Oct 6 08:55:17 EDT 1997

Great job, add more !! You have helped me so much!!
Rebecca
pa USA - Content-type: text/plain Sat Oct 4 11:32:30 EDT 1997

Good job! I have read some of the poems and I think that it is excellent that you have the courage and stregnth to live through all the bad times. God Bless all of you!
Rachel Ellen
Ukiah , Ca USA - Content-type: text/plain Fri Oct 3 01:01:09 EDT 1997

Glad to see this site here, makes me feel not so alone on the net...
Rick Dempsey <ricknco1@aol.com>
Ft. Collins, CO USA - Content-type: text/plain Fri Oct 3 00:33:24 EDT 1997

The poems displayed are excellent. I can't wait to bring them back to my health class at Staten Island Technical High School in Staten Island, New York to put in our monthly health bulletin. These poems help us to appreciate the fight that victims of these diseases have to go through every day.
Stephen <smvinjr@con2.com>
SI, NY USA - Content-type: text/plain Wed Oct 1 15:52:45 EDT 1997

I read a couple of these wonder poems and they touched me. I am currently a student a Florida State University as a Physical Education and Health major. I loved these poems and would like to share them with the class jsut to remind everyone that life is too short and we should take advantage of every oppurtunity we get no matter what our situation. Thank you again for touching me in a unique way.
Clay McDonald
Tallahassee, Fl USA - Content-type: text/plain Wed Oct 1 15:28:42 EDT 1997

I sustained my TBI in the early morning of June 18th, 1985.I went for an estimated five to eight hours unfound. Sincerehabilitation in two hospitals, and two outpatient clinics.I was able to return to graduate from college, and wassuccessfully employed for quite a while. I got married to awonderful man in 1992, and have a beautiful baby girl, namedMorgan. Who is presently misbehaving during her nap time...got to go!If anyone is interested in contacting me, in regards todiscussion or support. Feel fre to reach me at:mkmflood@visuallink.com
Katherine Devlin Flood <mkmflood@visuallink.com>
Winchester, VA USA - Content-type: text/plain Wed Oct 1 13:13:11 EDT 1997

I am a TBI survivor (cerrebellar hemmorage-'91), and I recently put my local support group (in NE Pennsylvania) on-line. There'snot much there, yet, and I was just "visiting" any TBI (mainly survivor) relatedsites that I found on the net. I really like this one!
Melissa Borchert <missy12@prolog.net>
Mountaintop, PA USA - Content-type: text/plain Wed Oct 1 00:45:57 EDT 1997

I am very touched by your poem and am glad that you are alive to tell about it. I have lost two very two friends that were in the same situation as you. They were very young and part of the the high school drinking programs that we had several years back. I have been in law enforcement for 5 years and my husband has been a cop for 22 years and believe me we can't stop them all, it needs to come from the parents as you and I had it. Your parents must be very wonderful to have pushed that issue hard enough that it would stay with you even with the peir pressure. Let me know if there is anything I can do. God Bless you.
Chele F. Deaton <chelef@hotmail.com>
MO USA - Content-type: text/plain Sat Sep 27 12:56:34 EDT 1997

Hi there to everyone, so glad that this page exists, my own particular case is one of the tbi caused from years of various hits to my left temple. The last one was all it took to finish the job started years before. The partial complex seizures are the ones that I have and have been disabled with them for over 4 yrs now. A way that I have found to cope other than a strong prayer life and strong family, is writing. My webb page is evidence of that, I truly enjoy it. By the way the DAHH's stands for Disabled American House Husbands. Hope you will stop by and check out my page and again I thankyou for your page I am adding it to my list of favorite places.
Tim Taliaferro <Wakitaki@aol.com>
Tulsa, ok USA - Content-type: text/plain Thu Sep 25 21:04:46 EDT 1997

If anyone knows anything about dogs for people with epilipsyplease let me know. We had seen a show about this but cannotfind anything more. It would be for our 8 year old son,whostarted having seizures at 2 and has only become worse.So any help with this would be great!
Patty <trish @creative-net.net>
ky USA - Content-type: text/plain Thu Sep 25 19:18:38 EDT 1997

I like your web site! People with TBI are very special people! My heart goes out for my friend who has TBI. He always carries a planner with me. Have a great day!
Tracey Tracey <Lush500>
London, England - Content-type: text/plain Thu Sep 25 11:53:44 EDT 1997

as epilepsy has touched the life of someone very near and dear to me, the information and support available means more than you can ever know!thanks for being there!
rachel d. erenstoft <eren1783@splava.cc.plattsburgh.edu>
plattsburgh, ny USA - Content-type: text/plain Thu Sep 25 09:53:26 EDT 1997

Hi,I am a high school educator teaching psychology. We just started a unit on the brain and behavior. I do include a section on brain injuries.Please let me know if you have any valuable resources that I should be aware of. Thanks for your help.
Ken Ripp <ripp0015@execpc.com>
Eau Claire, WI USA - Content-type: text/plain Tue Sep 23 20:33:29 EDT 1997

Hi! It's me again. Since I have been diagnosed withepilepsy, I have been worried about myself and the views of other epileptics and TBI survivors. So please get back tome as soon as you possibly can, with an answer to a couplequestions I have to ask everybody. 1. What is your perspective on courage and does it differ from those thatthat have not had the experience in life as we have had?2. At what point do you think you had the most courage?3. If you have any advice for any newcomers, what would itbe? Well, my address again is P.O. Box 850, PierrePont Manor, NY 13674. And if anyone want to call, my number is 1-315-465-5213. Thank you for your time.
Jaime Dodd
PierrePont Manor, NY USA - Content-type: text/plain Mon Sep 22 13:24:51 EDT 1997

I am a TBI individual with a lot of questions. Being only 4 months post injury I wonder what my life will be like. 1-406-778-2505
PAUL TINNES
BAKER, MT USA - Content-type: text/plain Thu Sep 18 17:32:33 EDT 1997

I have just recently become an epileptic, on February 12 1997. It was on the cause of brain damage from an accident 5 years ago. I am searching every program on the internet for every possible bit of information. If anyone wants to help me get accustomed to being an epileptic, my home address is below. P.O. Box 850Pierrepont Manor, NY 13674
Jaime Dodd
Pierrepont Manor, NY USA - Content-type: text/plain Thu Sep 18 11:42:56 EDT 1997

Iwork as a case manager. I work with people who have a diagnosis of epilepsy and TBI. I need to learn alot about TBI and will continue to do research on the subject.
Maureen <Mobaby7948@Aol.com>
Congers, NY USA - Content-type: text/plain Tue Sep 16 22:46:33 EDT 1997

I think that the poem u have is a really great poem. I know itbeen passed around AOL and i have gotten many times and I knowthat it is one thing that keeps me out of trouble.
Sarah <SFlirt22@aol.com>
Burlington, ma USA - Content-type: text/plain Sun Sep 14 16:13:19 EDT 1997

I'm a survivor 35 y.o 12 yrs. post.. Living alone, wife divotced meI'm going back to college at Scott Community College in IowaTootles.......Seth
Seth Wood <Seth@qconline.com>
Bettendorf, IA USA - Content-type: text/plain Sat Sep 13 00:36:52 EDT 1997

I am very impressed with your website. I am a graduate student in Rehab. Counseling at SFASU in Texas, and I have a passion for working with persons with TBI. Thank you for providing useful information about TBI/ABI. I would like to recommend that information about Voc. Rehab. Counseling be included. It is so difficult to findinformation about Rehab. Counseling per TBI, especially issues related to "counseling and job placement". Most of it is classified under employment/community integration....Just a suggestion. The poems are beautiful!!!Thanks for your time,DORI
Dori Lazauskas <lazauskadc@titan.sfasu.edu>
Nacogdoches , TX USA - Content-type: text/plain Thu Sep 11 22:11:16 EDT 1997

I am very impressed with your website. I am a graduate student in Rehab. Counseling and I have a passion for working with persons with TBI. Thank you for providing useful information about TBI/ABI. I would like to recommend that information about Voc. Rehab. Counseling be included. It is so difficult to findinformation about Rehab. Counseling per TBI, especially issues related to "counseling". Most of it is classified under employment/community integration....Just a suggestion.Thanks for your time,DORI
Dori Lazauskas <lazauskadc@titan.sfasu.edu>
Nacogdoches , TX USA - Content-type: text/plain Thu Sep 11 22:03:21 EDT 1997

Ihave complex partial seizures and was glad to read your poems. they are very good. It is hard to explain to someone who has never gone threw anything like a seizure what it feels like. KEEP UP THE GOOD WORK YOUR FRIEND ONEDERWIFE
CAROLL TAYLOR <ONEDERWIFE @aol.com>
USA - Content-type: text/plain Thu Sep 11 11:37:55 EDT 1997

Very helpful! Thanks!
John Kuiters <jkuiters@ozemail.com.au>
Tamworth, N AUSTRALIA - Content-type: text/plain Wed Sep 10 07:51:36 EDT 1997

Very helpful! Thanks!
John Kuiters <jkuiters@ozemail.com.au>
Tamworth, N AUSTRALIA - Content-type: text/plain Wed Sep 10 07:50:47 EDT 1997

NEED INFORMATION ON HOME IN BINGHAMTON, ENDICOTT, OWEGO AREAFOR A TBI 26 YEAR OLD MALE.
JOYCE & JOHN LARNERD <JODALA@AOL.COM>
OWEGO, NY USA - Content-type: text/plain Tue Sep 9 20:50:26 EDT 1997

I am a senior Occupational Therapy student at Keuka Collegein Keuka Park, NY. Your poetry is both beautiful and touching.I feel very lucky to be in a profession where I will be able to work with similar persons and learn from them.
Kristin L. Lanterman <klanterm@mail.keuka.edu>
USA - Content-type: text/plain Thu Sep 4 18:44:35 EDT 1997

Super job; very helpful; THANKS !
keith pike <kappy@thezone.net>
st.John's, NF CANADA - Content-type: text/plain Wed Sep 3 20:48:52 EDT 1997

Debbie and Chris, I have watched your work from a distance on and off for a few years. I am a TBI survivor. I have benifited from your web site and posts on newsgroups. I hope one day my family and I can visit Hawaii and thank you'all in person. John & LaurieGriffiths-Dawson.
John Dawson <griffiths-dawsons@email.msn.com>
Webster, TX USA - Content-type: text/plain Wed Sep 3 16:03:13 EDT 1997

Hi Guys, Great page! Spent a number of years in your beautiful state during my days in the U.S. Navy
Phillip & Marlena Coons <campc@radix.net>
Waldorf, MD USA - Content-type: text/plain Tue Sep 2 09:03:23 EDT 1997

Thanks for helping me understand my TBI
Liz Zastko <EZSysInc@aol.com>
Longwood, Fl USA - Content-type: text/plain Sat Aug 30 20:35:58 EDT 1997

Wonderful. Just great.
Lucie Forget <forgev@netc.net>
St-Blaise, QQc CANADA - Content-type: text/plain Sat Aug 30 11:17:40 EDT 1997

i know the complex partial story all too well...keep your chin up! love always b
bjc <eeg@mars.ark.com>
USA - Content-type: text/plain Fri Aug 29 21:44:22 EDT 1997

thank you for all your work on this website. TBI is a very serious matter, I myself am a survivor. NOT A VICTIM, but a survivor. We must stay positive about our rehabilitation. just making it day by day takes a lot sometimes, and i'm very blessed. your website was a joy to see-thanks again
trudee <trudbrit@msmc.la.edu>
los angeles, ca USA - Content-type: text/plain Fri Aug 29 19:05:26 EDT 1997

Dear Sirs/Madam,I am writing to hopefully inspire you to inform and save others the trouble I have recently been through. I will try to be brief, and upon request I can produce ALL records and tests results to verify this story.You see, 2 years and 2 months ago I had a Grand Mal seizure, was hospitalized, and started on medication. Since then I have been on Depakote, Dilanton, Tegratol, and Topamax. I was told these epileptic seizures were from a car accident I had in 1989, when I hit my head on the windshield. End of discussion. Accept it , take medications, don't drive and move on with your life. I continued to have seizures at random, having them get progressively worse since March,1997. Recently, I went for a second opinion and was told by this neurologist that I was a good candidate for neurosurgery. This involved having extensive testing to locate the scar and then brain surgery to remove the affected area. Although it was a difficult decision to make, being told I was a good candidate encouraged us to schedule it for August, 97. By bizarre chance, I met a Lyme Disease Specialist, Dr. Gregory Bach (his wife is a dog trainer whom we were actually scheduled to meet for dog training! This is an incredible story within itself!). He visually noted some symptoms while we spoke and asked if he could do a lengthy exam and perform some tests for Lyme Disease. Stunned, I agreed and astoundingly my first Lyme test came back positive. This test was sent to IgeneX Lab in California which specializes in the most current Lyme Disease testing. It is MUCH different than regular tests run at regular labs such as Smith-Klein or Quest Diagnostics.We are still in awe, but to make a LONG story short, since the proper diagnosis I have been taking Lyme busting antibiotics, am SEIZURE FREE and feeling the best ever in 2 years. My neurologist from the University Of Pennsylvania, (who was to do my brain surgery) agrees after testing that the seizures were caused by the Lyme Disease going undiagnosed. It was undetected for so long that it progressed to the late stages of Lyme Disease. I have had other major illlnesses including meningitis and gall bladder disease (which resulted in surgery for removal) that were effects of Lyme disease going undiagnosed for a lengthy period of time. I ask you to PLEASE help inform more doctors and patients saving them a horrendous time such as my family and I have been through. I am a 29-year-old female, married to the most supportive and caring husband, with 3 children. They must all be tested now and put through more anguish themselves. This could have and should have been avoided with a simple blood test earlier. Considering the voluminous amounts of blood work I've had to have done monthly since taking seizure medications, I know now it was all for nothing. The incredible amount of money we (and our insurance company) spent on healthcare could also have been avoided if more doctors, patients, and common people were educated to be aware of Lyme Disease. And that pales in comparison to the amount of permanent scarring my family and I have spent never knowing when a seizure would occur and which child might be affected by the incident. Seeing mommy "really sick and unable to talk" could have been avoided by KNOWLEDGE. I seriously ask for your help in spreading the word and helping others that may have the same debilitating condition needlessly.Thank you!
Tara <Stoopy1@AOL.COM>
Horsham, PA USA - Content-type: text/plain Fri Aug 29 11:11:49 EDT 1997

I had a right temporal lobmectomy in june of '97. The Hipocampus was removed due to scar tissue forming on the brain from a fever at a very young age I have had no seizures since the surgery and am feeling wonderful.I would like to share my experience with anyone who isconsidering surgery. I feel this is the best decision Icould have made. No seizures, No medicine within 1 year, and until then, only 1 med instead of 2 or 3.
Heather McKay <Mckahe01@oneonta.edu>
Oneonta, NY USA - Content-type: text/plain Fri Aug 29 11:08:12 EDT 1997

great poems and quotes
priya ankiah <pankiah@hotmail.com>
england - Content-type: text/plain Tue Aug 26 16:35:48 EDT 1997

My 27 year old daughter suffered TBI in an auto accident in October, 1996. After lots of luck, rehab, and hard work, she is back to work full time. Since the accident, stress at work is really hard to handle. We'd love to hear from other survivors who are working full time. This site is great! I searched libraries without finding his much information. Thanks!
Barbara <bkipnis@enteract.com>
Riverwoods, IL USA - Content-type: text/plain Mon Aug 25 23:31:23 EDT 1997

My previous message should have read "I have not driven since 12/95". Sorry about that.
Cliff Hodnett <cliff@gamewood.net>
VA USA - Content-type: text/plain Mon Aug 25 10:04:07 EDT 1997

I have epilepsy resulting from a skull fracture sustained in a auto accident when I was 15 (11/5/55). I have been on permanent disability since 4/95 and have driven since 12/95. Iwas tested in 89 to see if surgery was a option. It wasn't. I am on my 3rd or 4th drug study at Duke UMC. I have a good neurologist, supportive wife and family, and a Heavenly Father that sustain me.Keep up the good work!
Cliff Hodnett <cliff@gamewood.net>
VA USA - Content-type: text/plain Mon Aug 25 10:01:29 EDT 1997

I do not have epilepsy but have suffered with intensive headaches and tested for brain tumors. I take medicine. I do have fibromyalsia. I am an animal behaviorist active with both Service Dogs and Animal Assisted Therapy. I would be happy to share any information with people on this subject.
Dawn Hoppe <hopk9@juno.com>
West Palm Beach, FL USA - Content-type: text/plain Fri Aug 22 11:51:21 EDT 1997

I have been a "proud" epileptic since the past four years and am under medication. Afterall it is something I share with a lot of famous people.I would love to be updated on advances in the field of epilepsy cure.Would really appreciate it if you could help.Thanks
Sandip Tarkas <Sandip.Tarkas@Fulcrum.hta.sprintsmx.ems.vsnl.net.in>
USA - Content-type: text/plain Fri Aug 22 11:21:11 EDT 1997

reading some of these other notes about personal experiences, i'd like to tell some of you to turn to god. i'm a couple months from 25 (time for insurance rates to drop) too bad i cant drive because of seizures. 3 years ago i ended up in the hospital because of a car accident, luckily noone else was involved. for several months afterward i was in and out of clinics and labs only to find out i was o.k. well, went into the navy and the seizures started over even more frequent. got a medical discharge,epte and sent home. at another hospital, found out i had a tumor in the right temporal lobe of my brain causing all of the activity. went thru some tough times and had to sign a contract of agreement for no suicide with my psychologist. finally had the tumor removed after 28 days with depth electrodes installed in my head, and a video camera in my face 24 hrs a day. months later i found out i'm havingactivity on the left side of my brain. bunches of tests to follow and a lot more stress. thought i'd behalf way done with school by now. guess again!!! i've always believed that everything happens for a reasonmaybe the navy wasn't meant for me. i'm glad that friends and family have always been there for me. now i'm gettinga lawyer involved in the fact that, if i had been notified of the results of the mri and catscans three years agoand something had been done then, would i have to worry about activity on the left side and the mental trauma.
zac carpenter <texraid@ix.netcom.com>
houston, tx USA - Content-type: text/plain Wed Aug 20 23:56:50 EDT 1997

I am a mother of six children, five girls and had one son who passed away last year with cancer. Fifteen years ago, I had horrible headace's and was having some tremors in my body. Needless to say, on my 34th birthday, I had a grand-mall seizure. My husband took me to the hospital and I preceeded to undergo alot of testing. Finally two days later, my doctor informed me that , I had a brain tumor. I was shocked and so was my children and family. At that time my twin babies were only three. The oldest was fifteen and she then had to help me with chores and tending to the little ones. I had a major operation to remove the tumor. The doctors told my husband that I may not live no more than three years. After the surgery, I started having grand-mall seizures one after another. Sometimes, five a day. I was put on all kinds of medication to control them. I was like a sombe, never knowing day from nite. My three years went by fast, and yes , I still was alive. God had been watching over me. Then when I had my forthy birthday, again I had another brain tumor. This time it was in a very bad place. It was surrounding my brain stem. The doctors again, removed as much as they could and again my husband was told that I may not live . When I awoke from surgery, I was parallezed completely on one side of my body. It was a long road ahead for me, through therapy I was able to walk with a leg brace and a walker. I still had seizures and had to under-go thirty-two radition treatments. My head had already been shaved , so it was easy for them to draw lines all over my head. I looked horrible and felt horrible. After all the treatments, the doctors told me that my hair would not grow back . I was so upset, being bauld, the rest of my life. How could that be. Now forty - nine, nine years have passed since my second surgery . Every day I wonder will that tumor grow again. On my own , I quit all medication for my seizures and doing better now than I ever had before. I still have seizures, small ones. I can handle those alot better. I do not advise anyone to stop taking their medication, I chosed too, without the doctors consent. They still want me on my medicines. I now have been off for a year, I stopped right after my son died. I went through some hard withdrawls and my husband went through them as well with me. I still were a leg brace for walking, and yes, still bauld on top of my head. My five daughters are grown and doing well and we all miss my son. You have a wonderful web-sit, and yes I feel for you as well. Just hang in their. I have went through alot, but to me , the hardest was losing my son. I could have died years ago, but now I know why I am still alive. God knew that I was needed to take care of my son to the end.Take care,Jennifer
Jennifer Jenkins <JLYNNJENK@aol.com>
Groves, TX USA - Content-type: text/plain Tue Aug 19 13:11:24 EDT 1997

Dear Debbie: I am a Disabled Veteran with Epilepsy from a head injury in the army I read your storey and if reminded me of what I had to go through in 1980 and like you I had a good job that I enjoyed a lot and now I can't do anything but go nuts and think of ways to end it all because it have a hard time to live in a jail of four walls I am glad for you and hope that you and your family can get everything back together and have a good happy life. thanks Dennis
Dennis Moody <BMoody3496@aol.com>
Sidney, Me USA - Content-type: text/plain Sun Aug 17 19:47:40 EDT 1997

What a wonderful sight! I had to stop reading the stories and peoms as I didn't want to cry too much.On February 22, 1997 at 2:50 p.m. on aa cold but sunny day, my 7 year old son was struck by a van while trying to cross the street with friends. No one expected him to live. The police filed a fatality report on him. They were wrong.He was in a coma for 4 days in pediatric ICU. The neurosurgeons didn't expect him to do very well and he would have to spend 6 to 8 weeks in a rehab center. They were wrong.He wlked out of that hospital holding my hand 9 days after the accident. He went on to pass the first grade with his class after missing 6 weeks of school.He has a brain shear injury and has damage to his brain stem, the corpus callosum, and to the left side of his brain.He has memory impairment especially with remembering names.The lady who hit and almost killed my child never even said she was sorry. Thank you for letting me share a little bit of my story. Keep up the good work! You are doing a wonderful and beautiful thing with this web site.Elizabeth
Elizabeth Potenza <dbfox@sprynet.com>
Indianapolis, IN USA - Content-type: text/plain Fri Aug 15 23:12:43 EDT 1997

Last e-mail message had the e-mail address wrong.It should read snn@coupeville.net. Sorry about thetypo. Hope to hear from you.
Sharon Samplawski <snn@coupeville.net>
Coupeville, Wa USA - Content-type: text/plain Thu Aug 14 14:03:52 EDT 1997

Really enjoy your web site and the guestbook. We havea 25 year old son who sustained a TBI 3 years ago from acar accident. He is now in a brain injury rehab facility andis doing okay. His disabilities are permanent. He is in anelectric wheelchair and so is mobile. He is very cognizantof his situation and still has his sense of humor (which isvery important!), but there doesn't seem to be very manyrehab programs currently scheduled for him at thisfacility and both he and us (his parents) are gettingdiscouraged. Although he is very aware of his situationhe struggles with his verbal skills which makes it difficultfor him to convey his thoughts. Also, he has lost most ofhis ability to read or spell. Would like to hear from familieswith similar situation. We feel there is more for him to doin the retraining, rehab area and are not willing to give up.
Sharon Samplawski <snn@coupeville.nte>
Coupeville, Wa USA - Content-type: text/plain Thu Aug 14 13:56:10 EDT 1997

My wife Liz and I have enjoyed all that you have given usover the past months and hope you will continue on
Alf and Liz Lucas <alfer@sunshine.net>
Sechelt, B.C. Canada - Content-type: text/plain Thu Aug 14 01:12:29 EDT 1997

Just had a very bad experience with Tegretol (1000mg). Caused extreme unsteadiness and was limiting my movement. I was falling and hurting mysely badly. Hope no one else has has this problem.
Terry Krinock <BareTer119>
Marcola, OR USA - Content-type: text/plain Mon Aug 11 18:11:19 EDT 1997

Debbie, I salute your courage. I have not had any experiences like your in my life. Thank God you made it through, and continue to survive. I look forward to getting to know you better this year. Emily is my daughter, Summer's friend. See you at the ballgames!
Gail Kemp <gmkemp@samford.edu>
USA - Content-type: text/plain Mon Aug 11 16:16:17 EDT 1997

I am doing research for the website at university of california at riverside, dept of special education, and came upon your site for review and inclusion in our bookmarks.
richard long <rfl@pe.net>
temecula, ca USA - Content-type: text/plain Sat Aug 9 21:16:56 EDT 1997

I found your listing when I was looking for the St. Johns TBI support group, looks like a great resource!
Cindy Huguley <chuguley@erols.com>
VA USA - Content-type: text/plain Fri Aug 8 21:29:07 EDT 1997

I printed Debbie's experience for my husband (twelve years post tbi from car accident - left frontal lobe w/ coma & partial paralysis). He was cared for by his mother and father, both in medical field, while he went through "some" physical rehabilitation. He learned to speak and walk again. However he suffers from hemiparesis (right-side) and diplopia (double vision in his left-eye). He hasa history of depression and anxiety coupled with other psychological problems. He says that no one ever understood, or he couldn't make them understand. Until I begged him (six years post tbi) to seek professional help for psychological stress and anxiety symptoms, he had just "self-medicated" and "tried" over and over to stay "sober." He knew thatmedicine would make him "feel better," but actually, medicine has hurthim more than helped him. He has tbi/sa problems, and they are serious.He appears so "normal" to everyone, with some behavior that at timesappears strange. But I have lived with him for five years, and I know,he is in physical and emotional pain. He wants help, and I will do everything in my power to help him get it. He will have the resources he needs to gather the strength to begin hislifelong recovery and take charge of his life again. Thank you for sharing your story, it will give him hope. And I pray otherswill know that when some one is hurting, don't tell that person that it's something else, or it's not anything, or whatever youtell them when you don't know, because you don't have all theinformation. Bless you both.
Cindy <wharmes@cc.memphis.edu>
Memphis, Tn USA - Content-type: text/plain Thu Aug 7 04:48:59 EDT 1997

I really enjoyed this page and all the poems. I printed them out and read them to my husband who suffered a TBI after a severe car accident. The poems made him cry and he said, "Oh my God, that is exactly what I feel, I'm not alone am I?" Thank you so much....this woke him up and he is now trying to accept the "New Him"
M. French <frenchks@terraworld.com>
Parsons, KS USA - Content-type: text/plain Tue Aug 5 19:40:09 EDT 1997

I have been dealing with epilepsy for over 10 years, after suffering from an extremely high temperature when I was 45 years old. I found your web site very informative and comforting. It takes all kinds of support to help deal with epilepsy.I can assure you that I will be returning to your site in the future. Your efforts are deeply appreciated. Thank you.
Larry Jacober <ljjacobr@midwest.net>
Carbondale, IL USA - Content-type: text/plain Tue Aug 5 00:56:47 EDT 1997

I have epilepsy as a result of a brain injury caused by a fall when I was 3 years old. I have a lot to learn and am hoping to learn from the experiences all of you have had. I have told myself that I am going to remain positive and handle everything as God has dealt them out. I am very thankful for my family who offers support and love at all times!
Kathie Brown <kinast@computer-services.com>
Haven, KS USA - Content-type: text/plain Mon Aug 4 16:27:21 EDT 1997

I have a dear friend who is dealing with life after a TBI.I appreciate your information very much. Thanx.
rebecca jones <reb.jones@mail.utexas.edu>
austin, tx USA - Content-type: text/plain Sat Aug 2 01:08:18 EDT 1997

Just trying to gather information on Epilepsy. My nephew, Kyle, has been diagnosed with it and I'm trying to learn more about it.
Tami Marsland
Roanoke, TX USA - Content-type: text/plain Thu Jul 31 16:27:39 EDT 1997

Just looking up information on Epilipsy. My nephew, who just turned 2, has been diagnosed with it and I'm trying to gather info for my brother.
Tami Marsland
Roanoke, TX USA - Content-type: text/plain Thu Jul 31 16:23:02 EDT 1997

My 19 year old daughter was recently diagnosed with epilepsy and had her third seizure on July 4th. Any support anyone can give me would be greatly appreciate.
Brenda <emirsky859@aol.com>
USA - Content-type: text/plain Thu Jul 31 15:52:57 EDT 1997

This was my first visit to the site. I am a social worker with Brain Injury Association of Florida working with survivors in the community. Hope to be coming back to site soon.
Tracy Byrd, M.S.W. <TBYRD8260@AOL.COM>
USA - Content-type: text/plain Thu Jul 31 11:50:29 EDT 1997

My 24 year old son has been head injured, with complex partial seizures and short term memory deficit, since he was 16. He is an art major at ASU. He had a temporal lobectomy 8-23-96 at Mayo Clinic, with little positive result
Charles ( Chuck) Johnson <jochas6548@aol.com>
Scottsdale, AZ USA - Content-type: text/plain Wed Jul 30 03:06:24 EDT 1997

Yuor Bookmarks have helped me serve my clients better on several occasions and I felt obliged to let you know we appreciate the help. THANKS
Stuart C. Goering <Stuartzap@aol.com>
York, Pa USA - Content-type: text/plain Tue Jul 29 23:16:50 EDT 1997

Hello, I'm a two year TBI Survivor, my life has changeddramatically as other survivors that I have talked with sincemy accident.The web page that I have on here are all my web pages puttogether. New Beginnings is a site devoted to TBI.Your site has lots of great information, would like to link?I bid you Peace and Harmony.
Rose <oregonrose@prodigy.net>
Corvallis, OR USA - Content-type: text/plain Mon Jul 28 13:35:15 EDT 1997

My father is a disabled american living in Atlanta GA. He suffers froma neurological disorder caused by a car accident in his late 20's. He isnow 55 and in serious need of moderated health attention. Today he isin good health and maintains a steady job. He has been in the care ofhis mother who is now in a Nursing Home. Since I live in New York noone can look after him. I would like to investigate a potentialassisted living situation as well as any federally fundedprograms available.Sincerely,March Wallin Chadwick30 Charlton St.New York, NY 10014212-691-9267
March Chadwick <marchc@erols.com>
New York, NY USA - Content-type: text/plain Sat Jul 26 08:36:39 EDT 1997

Your site is wonderful! My son who is 3 years old now was severely injured when he was 4 months old by a babysitter who was watching him at the time. The doctors said he had a skull fracture and bleeds in his brain. They did'nt give him much chance of living, but he did. He has been in and out of the hospital for the last 3 years with many complications. The doctors say his outlook is not good in that he will never walk or talk or be able to see. He is the sweetest child. About all he can do is smile which he does a lot of. It is so unfortunate this happened to an innocent baby. My wife and I struggle with this everyday and probably always will. In case you are wondering, the babysitter was never prosecuted.
Sean Groce <seagro@bright.net>
Frankfort, Oh USA - Content-type: text/plain Thu Jul 24 14:01:45 EDT 1997

Your site is wonderful! My son who is 3 years old now was severely injured when he was 4 months old by a babysitter who was watching him at the time. The doctors said he had a skull fracture and bleeds in his brain. They did'nt give him much chance of living, but he did. He has been in and out of the hospital for the last 3 years with many complications. The doctors say his outlook is not good in that he will never walk or talk or be able to see. He is the sweetest child. About all he can do is smile which he does a lot of. It is so unfortunate this happened to an innocent baby. My wife and I struggle with this everyday and probably always will. In case you are wondering, the babysitter was never prosecuted.
Sean Groce <seagro@bright.net>
Frankfort, Oh USA - Content-type: text/plain Thu Jul 24 14:01:21 EDT 1997

Wonderful site! Thanks for all the info! Anyone withcomplex and simple partial seizures that wants to write, feel free to drop me a line!!
Dawn <dcoder@niven.imsweb.net>
FL USA - Content-type: text/plain Wed Jul 23 23:51:11 EDT 1997

On August first 91, I was in a truck vs bicycle accident,after wich I was put instantly into a coma wich I remained in for one month. I spent from August 1st until sept. tenth I stayedin Harborview Hospital,then I was transfered to Childrens Hospital where I stayed for 9 months, then I spent 1year in out patient treatment at Evergreen Head Injury Rentry Center(HIRE Center). I now attend Edmonds community college were I am getting my highschool diploma. I was fifteen when I got hit and am 21 now.I have dealt with the ups and downs of a head injury, and it is still as newto me now as when I had to learn to walk or even move left half of my body.I am pleased to find a site specificaly for this. It is sad that brain injuries are still kept on the back burner. Thank you for the attention to this matter.
Joe Bevens <snapt1@gte.net>
Edmonds, WA USA - Content-type: text/plain Mon Jul 21 03:00:21 EDT 1997

I am 23 years old, and suffered a brain injury at 16, when I was struck by a car whilst crossing a road. I was unconscious for twenty minutes, but have been struggling ever since to have my injury and problems accepted. Nobody believes that anything is wrong.
Steven McIndoe <96614250@mmu.ac.uk>
Manchester, England - Content-type: text/plain Tue Jul 15 09:42:52 EDT 1997

I am a person dealing with having epilepsy. I feel that this is great what you are doing. I found it very comforting to read some of these poems. It made me feel a little better about my situation. I would like to receive more information that you all would be willing to share. Thank you.
Cynthia Clarke <cclarke@networkbta.com>
Detroit, Mi USA - Content-type: text/plain Mon Jul 14 16:29:14 EDT 1997

I was looking for a live chat room about epilepsy but no luck I get tired of just reading Im looking for help .
Kathy <KweenB@wbtv.net>
Las Vegas, NV USA - Content-type: text/plain Mon Jul 14 00:01:51 EDT 1997

I was looking for a live chat room about epilepsy but no luck I get tired of just reading Im looking for help .
Kathy <KweenB@wbtv.net>
Las Vegas, NV USA - Content-type: text/plain Sun Jul 13 23:35:39 EDT 1997

I LIKE THIS PAGE, IT IS PRETTY COOL!! I LOVE POEMS AND STUFF SO THIS REALLY FITS MY STANDARDS!! AREN'T YOU GLAD?? WELL GOTTA GO, LATER!!!! =Ţ
BONNIE LEGER <DAISY9801@AOL. COM>
WINNIE, TX USA - Content-type: text/plain Fri Jul 11 22:17:03 EDT 1997

I enjoyed your website.
Eric Cravey <CraveyEC@juno.com>
Orange Park, FL USA - Content-type: text/plain Tue Jul 8 22:19:12 EDT 1997

I am just looking around for informationOur daughter has a form of epilepsy which is very near toWest's Syndrome plus she is very bad hearing (-70dB) and mentally retarded. She is born on Nov 7 , 1992 and she is currently "being educated" at a institute fordeaf children in St Michelsgestel in the Netherlands.They are trying to get her to understand simple forms of communication and it has already got a little success.
Ronald Schouten <schouten@wt.tno.nl>
Delft, Netherlands - Content-type: text/plain Sun Jul 6 15:03:54 EDT 1997

awesome I thought I was alone with this but i'm not it'sbeen since 11/17/82 and it's different out there but the normiesknow not of what I speak at last I can learn more Mahalo
John Wade <johnyai@hilo.net>
Pahoa, Hi USA - Content-type: text/plain Sun Jul 6 04:12:26 EDT 1997

My favorite was "Remember Me" for those of us who have been lucky to be healthy, it makes you think. I'm a nurse and this will definitely help me deal with my patients as human beings. Keep up the good work.
Mary <gitchi@hotmail.com>
CA USA - Content-type: text/plain Fri Jul 4 17:01:02 EDT 1997

I read "Pretence". This peom tells how I feel... I was shocked to see what I say in my head so very often written down.
Renee' <Syncrogirl@aol.com>
TX USA - Content-type: text/plain Thu Jul 3 21:14:06 EDT 1997

I'm having alot of trouble with epilepsy and anxiety. If there is anyone that can give me advice or help I would really appreciate it.
Cory Hyatt <chyatt@dryden.net>
Dryden, Ont Canada - Content-type: text/plain Sat Jun 28 22:50:30 EDT 1997

This poem really touched my heart. It's something that makes you think.
amanda <GOGO324269@aol.com>
Hollywood , FL USA - Content-type: text/plain Thu Jun 26 13:53:27 EDT 1997

That poem was really sad I will never drink and drive
Cher
USA - Content-type: text/plain Sun Jun 22 22:13:04 EDT 1997

such a sad poem i'll never drink and drive.ever.
jane cox <daisyflrw@aol>
antioch, ca USA - Content-type: text/plain Sun Jun 22 14:06:37 EDT 1997

Traumatic Brain Injury Survivor. 9 months in hospital, 6 months in coma.
Ron Stafford <Survivor51@aol.com>
Richmond, VA USA - Content-type: text/plain Thu Jun 19 19:49:35 EDT 1997

I am a board member of Rainbow House, a home for TBI young people. Some of the comments help me to better understand the concerns of all individuals affected by TBI-the individuals themselves, as well as family and acquaintances. We so often take common, everyday events and tasks for granted. Working with TBI let's one take nothing for granted and constantly gives rise to evaluating one's perspective in an entirely new light.
Jeanne Parsley
USA - Content-type: text/plain Thu Jun 19 11:40:38 EDT 1997

Thank You for sharing the lovely poems. You gave me a tear in my eye, a lump in my throat and you made me laugh because I've been there too.Beautiful WEB site.Thank You so Much.Doc
Just Another Guy With Epilespy <wshumwa@ix.netcom.com>
Crete, IL USA - Content-type: text/plain Thu Jun 19 01:22:41 EDT 1997

FIRST VISIT TO SITE. THINK IT IS WONDERFUL
GB
USA - Content-type: text/plain Sun Jun 15 22:41:26 EDT 1997

Thanks for the poem. Nice to know that other people have the same problems.
Merry Roberts <afsalt@webnet.com.au>
Wynyard, Tasmania Australia - Content-type: text/plain Sun Jun 15 02:30:12 EDT 1997

I am 14 year survivor of ABI. I have gone on to finish my college education. I know work for myself as a Case Manager and trainer.I also volunteer with the New Hampshire Brain Injury Foundation and act as an advocate for surviors. My philosophy is that every brain injuryis as unique as the individual who has sustained one. Everyone has a right to individualized, progressive rehabilitation services to facilitate their recovery.Individuals have a right to achieve realistic GOALS, HOPES, and DREAMS!
Beth Robinson, MA <lunar@linwoodnet.com>
Lincoln, NH USA - Content-type: text/plain Sat Jun 14 22:00:39 EDT 1997

I am 14 year survivor of ABI. I have gone on to finish my college education. I know work for myself as a Case Manager and trainer.I also volunteer with the New Hampshire Brain Injury Foundation and act as an advocate for surviors. My philosophy is that every brain injuryis as unique as the individual who has sustained one. Everyone has a right to individualized, progressive rehabilitation services to facilitate their recovery.Individuals have a right to achieve realistic GOALS, HOPES, and DREAMS!
Beth Robinson <lunar@linwoodnet.com>
Lincoln, NH USA - Content-type: text/plain Sat Jun 14 22:00:02 EDT 1997

Great page Debbie. I have a 21 year old friend who had a near-drowning experience 2 years ago. It has left him with much brain damage due from lack of oxygen. He had a seizure under water. He now is in a nursing home. His Mother is having a really hard time coping with this. I am looking for someone who knows of the same accident or who as experienced the same at this age. If only she could find someone to talk to for support or maybe get some information. Debbie, you are doing a great thing creating this page for people like us that need help ,information and support . Keep up the good work and thank you. I also have a son with TBI due from a car accident. It has been almost 8 years now. He also lives in a nursing home. He is tube-fed,can not walk,talk or can't responed to our commands often, but he can smile and turn his head to me when I talk to him, laugh to a funny joke. Dec. 3rd,1996 he spoke a whole sentence. Three times he has answered a question "Yah". What responses we have gotten are great, Dr.s said he probably wouldn't even live. We just won't give up! May God Bless each and everyone of you I have read in the Guestbook and just keep on keeping on. Thank you.
Patricia Osborne <sunshine@vallnet.com>
Lewisburg, Tn. USA - Content-type: text/plain Sat Jun 14 21:54:05 EDT 1997

I found out about your page by browsing through, trying to find new and updated info about epilepsy.I have twin daughters who have been diagnosed with a seizure disorder of unknown origin since the age of 7 months.As a result, they are considerably late in their development.Chris is learning disabled and Jessica is mentally retarded.As they grow, even though controlled through medication, their seizure activity does not seem to lessen.Please e-mail me if you have any info that could be of use.I am in dire need of information on a good Epilepsy Centeror good doctors that can help my daughters.
marina <coolmama@hotmail.com>
san diego, ca USA - Content-type: text/plain Fri Jun 13 18:09:52 EDT 1997

Will be out this week.
Chris Wison <John Doe>
Bham, al USA - Content-type: text/plain Fri Jun 13 15:45:39 EDT 1997

test
test
USA - Content-type: text/plain Fri Jun 13 15:44:15 EDT 1997

Jean, my wife of 25yrs, was left comatose with brain injury after an auto accident 1 year ago.4 days ago she picked up a pencil and began talking with us(myself and our five children.)Jean is back and we are happyIt is a long hard road to recovery "Determination and Perseverance" !!!!!!!!!!!!!! NEVER GIVE UP, NEVER !!!!!!!!!!!!!!!!!!
clif <TBI Victm@aol.com>
Ca. USA - Content-type: text/plain Wed Jun 11 11:18:14 EDT 1997

TBI Survivor of 7 years and past President of the Richmond,Virginia Chapter of the US Brain Injury Assocation.
Ron Stafford <Survivor51@aol.com>
Richmond, VA USA - Content-type: text/plain Tue Jun 10 23:33:01 EDT 1997

TBI Survivor of 7 years.
Ron Stafford <Survivor51@aol.com>
Richmond, VA USA - Content-type: text/plain Tue Jun 10 23:18:17 EDT 1997

My daughter who is 13yrs old has had seizures since the age of 9 months. She was diagnosed as having a stroke before she was born. After many visits to many different doctors over many years we found the doctor that she has today. She has been on every anticonvulsant that there is. After about 7yrs of drugs and tests she had a right temporal lobectomy. Her doctors were fantastic. She is now 4 yrs. seizure free and doing great. We did not have all of the information back then about seizures that you have available here now. You have made it so easy for everyone to acess whatever information we need. Thank you. You have done a wonderful Job. Len, Marcy, and Christine who is 4yrs seizure free. Good Luck to you too!
Marcy Frattini <mfrattini@clover.net>
OH USA - Content-type: text/plain Tue Jun 10 08:54:23 EDT 1997

I am the woman who developed a seisure disorder because of a parasite. My E-Mail address never worked so I got a new one.
Cherri <CFruity@aol.com>
Rio Rancho, NM USA - Content-type: text/plain Tue Jun 10 01:31:33 EDT 1997

that poem was so sad, I almost cried...
Alutia <SHULA16@AOL.com>
Ft. Myers, Fl USA - Content-type: text/plain Mon Jun 9 19:56:11 EDT 1997

Hello, I'm a 10yr. recovered, head injury MOM. I had a baby boy, three days later, had a first, and last seizure in the bathroom of the hospital.I fell and hit my head on the floor. The neurosurgeon went in and remove two blood clots. Was in a coma for about 12 days. They didn't know if I would ever survive. I had awakened, and few days later went home to be with my folks, while my in-laws cared for my new-born son. I don't recall ofthe accident at all. I'm alive today. But the thought of this is all such a mystery to me. I thank God that I have my health, and my family.After going through this, it really makes you appreciate LIFE, so much more.
Sarah Rappe' <srappe@flash.net>
Houston, Tx. USA - Content-type: text/plain Sun Jun 8 19:58:23 EDT 1997

This poem really makes you think and realize things you didn't before. The same thing could happen to anyone even though you don't think so. Thank you and I'm sorry. Theat was beautiful! In the words of my mom "everyone should think before you do".
Brandy Dennis <sad10261>
Biloxi, ms USA - Content-type: text/plain Sun Jun 8 14:58:28 EDT 1997

I have that poem in a frame on my wall and everytime I read it it makes me want to cry. It's amazing what can happen in just a couple seconds of your life. I think that this poem should make people really think before they suffer the consequences of their actions.
Shawna McFadden <BUGGIE5716>
Palm Desert, CA USA - Content-type: text/plain Sun Jun 8 01:17:15 EDT 1997

I have that poem in a frame on my wall and everytime I read it it makes me want to cry. It's amazing what can happen in just a couple seconds of your life. I think that this poem should make people really think before they suffer the consequences of their actions.
Shawna McFadden <BUGGIE5716>
Palm Desert, CA USA - Content-type: text/plain Sun Jun 8 01:16:27 EDT 1997

I have that poem in a frame on my wall and everytime I read it it makes me want to cry. It's amazing what can happen in just a couple seconds of your life. I think that this poem should really think before they have to suffer the consequences of their actions.
Shawna McFadden <BUGGIE5716>
Palm Desert, CA USA - Content-type: text/plain Sun Jun 8 01:14:40 EDT 1997

thank you- i wish everyone going to my prom next sunday could also read the poem
april
USA - Content-type: text/plain Sat Jun 7 16:58:20 EDT 1997

Hello....I am 40 years old and I have had Epilespy since I was just over a year old. I was born with a rare birth defect called Arnold Chairi Malformation...This means that my brainstem is not fully developed and it is misplaced.....My brainstem is sitting insde my spinal canal.....Due to this I have had 3 brain surgeries......I have survive much longer than the doctors ever thought I would....I have had 4 wonderful children and I have a beatiful granddaughter (Desiree) ....My first marriage was a very abusive one and my second one was full of mental abuse.....No one has ever known exactly how I feel...I have numerous medical problems...one is a disorder that causes me to have bloodclots.....I take Dialatin for my seizures and take coumadin for the bloodclots; as well as other medications......It has been a long hard life for me and many times I have tried to give up and lie down and die......but I have managed to continue to go on.....I am currently in school and seeking a degree in special education.....I should graduate in December of 1998......I have been seizure free for 1 year today......It is on of the happiest days of my life.....This is the longest I have ever been seizure free....I am currently taking a speech class and I have to do a speech tomorrow.....I was searching the net for information on Epilespy and found your page......Thank you for all of the wonderful work you have put into this.....I am sure it has brought hope to many people like me.....
Cindy Theriot <ctheriot@gulfsurf.infi.net>
Pensacola, FL USA - Content-type: text/plain Wed Jun 4 22:28:16 EDT 1997

I found this page very, very informative. Thanks.
Phyllistine Travis <ptravis@adm.schoolofvisualarts.edu>
New York, NY USA - Content-type: text/plain Mon Jun 2 19:20:58 EDT 1997

I have Epilepsy from a head injury many years ago. It is always important to hear from others.
Jill M. Cordone <ABIGroup@aol.com>
Huntsville, AL USA - Content-type: text/plain Fri May 30 21:05:15 EDT 1997

petite mals
Wyant <Whim@exchange.lowe.org>
Cassopolis, MI USA - Content-type: text/plain Wed May 28 16:17:51 EDT 1997

As a second year nursing student it wonderful to read what you are doing. I was deply moved by your poems. Keep up the fantastic work.
Paul Baxter <bpaul@powerup.com.au>
Brisbane, qld Australia - Content-type: text/plain Mon May 26 17:18:54 EDT 1997

I RECIEVED THIS POEM IN SCHOOL AND ALMOST STARTED TO CRY. I THINK IT GETS THE MESSAGE OUT. I THINK IT SHOULD BE HANDED OUT TO ALL HIGH SCHOOLS AROUND THE COUNTRY SO THEY CAN SEE HOE IT FEELS WHEN YOUR AN INOCENT VICTIM.
JENNY SMITHERS <VGP 888>
HUNTINGTON, NY USA - Content-type: text/plain Mon May 26 14:51:37 EDT 1997

Well, I've searched all through your guestbook, and saw nothing as strange as what I have experienced. October of 1995, just after I turned 40, I woke early one morning and had 5 grand mal seizures, never gaining consiousness in the duration. After a CT scan, an MRI, x-rays, mamogram, 3 ambulance rides, and four days in the hospital, Doctors determined that I had developed a seizure disorder due to tape worm!!!
Cherri Reynolds <fruity@chilexpress.com>
Rio Rancho, NM USA - Content-type: text/plain Mon May 26 04:00:18 EDT 1997

The prom poem is a poem that I really like although it is sad. It makes you think about the effects you could have on not only yourself but also others. I am the Vice President of SADD at my school and we passed this poem out to all the senior in hope of reaching atleast one who may have driven while under the influenc.
Melissa Foreman <rainbow956@aol. com>
Northville, MI USA - Content-type: text/plain Fri May 23 16:19:38 EDT 1997

I had toxic encephalopathy as a child (7). As an adult I have never escaped debilitating bouts of depression. I have searched and searched the net for answers on toxic encephalopaty and come up empty. If anyone can supply any info on this disease/illness, I would very much appreciate it. I am at VEERTJE1@AOL.com. Thanks.
Jeff <Veertje1>
Atlanta, GA USA - Content-type: text/plain Fri May 23 01:22:04 EDT 1997

I HAVE ABI/TBI FROM AN ACCIDENT AT WALMARTI RECENTLY FOUND TONS OF INFO ON THE WEB.IWAS SURPRISED TO LEARN ABOUT HOW MANY PEOPLE THEY ARE.I JUST READ 'TO WHEREEVER OCEANS GO' BY BEVERLY BRYANT I HOPE EVERYONE READS IT.IT IS THE BOOK I WANTED TO WRITE BUT CAN NOT GET STARTED IT HAS LOTS OF GREAT POEMS
SHERI <IRWRIGHT@MSN.COM>
USA - Content-type: text/plain Thu May 22 20:23:18 EDT 1997

I've bookmarked this one. Lot's inspiration! Thank you!
Karen Verrill <verrillk@mailserv1.ferris.edu>
Big Rapids, MI USA - Content-type: text/plain Thu May 22 16:29:53 EDT 1997

One of your better, Debbie!
dickibus
USA - Content-type: text/plain Thu May 22 09:18:11 EDT 1997

I really enjoyed your poems.
Heather <Skibum@aol.com>
md USA - Content-type: text/plain Wed May 21 20:18:01 EDT 1997

A head injury is difficult,You never will know the full result.It is full of people who dont understand,That why you act and feel so damed.Questions that youll never get answers,But people act like its a balley dancer.You can never put a price on suffering and pain,With a head injury,you have nothing to gain.So I will go though life and all its sorrow,And hope someday I will feel a little better,Maybe tomorrow. 12-4 94
Bs <Bstanziana>
Phg, Pa USA - Content-type: text/plain Tue May 20 01:16:13 EDT 1997

As a full time caregiver/advocate for my husband the past two and a half years, I have been so frustrated with the lack of resources for the spouse. I am a brand new computer user. (One month old) I am overwhelmed with the amount of information out there I did not know was available. It has been a wonderful source of support. Thank you.
Dona <beachouse1>
Port St. Lucie, FL USA - Content-type: text/plain Wed May 14 12:58:41 EDT 1997

I really honer the work you guys are doing and I'll try to get everyone I now to sign your guestbook
Tejal Toprani <SMars2001>
Diamond Bar, CA USA - Content-type: text/plain Tue May 13 22:22:58 EDT 1997

This has become my favorite piece of poetry and I thought about it as I left the prom two weeks ago Thank you.
Duchess223
Orlando, FL USA - Content-type: text/plain Tue May 13 20:00:42 EDT 1997

It makes you think! and thinking is good
Morgen <PURPLEWIRL@aol.com>
SAlem, VA USA - Content-type: text/plain Sun May 11 11:03:48 EDT 1997

A long time ago I suffered a severe head injury in a soccer accident of all things and have had seizure like behavior ever since. Recently the doctors said that I had a type of epilepsy. Confused I found your page(s). Thank you for the imformation. I understand more now and am not afraid.
Sara Carter
Clearfield , UT USA - Content-type: text/plain Fri May 9 22:13:06 EDT 1997

I am really glad that someone has put out pages on this because I needed the infromation. My boyfriend has epilepsy, and this page will help me more understand what it is. Thank you.
Sarah Elizabeth
Houston, Tx USA - Content-type: text/plain Wed May 7 14:48:06 EDT 1997

YOUR POEM WAS REAL GOOD. PEOPLE DON'T THINK ABOUT STUFF LIKE THAT HAPPENING UNTIL IT HAPPENS TO THEM OR A LOVED ONE. IT INSPIRED AND TOUCHED ME AS I HOPE IT DOES OTHER PEOPLE. KEEP UP THE GOOD WRITING.
DANIELLE
FLORENCE, SC USA - Content-type: text/plain Mon May 5 22:14:16 EDT 1997

I find your poem interesting as I am into poetry now that my life has changed so keep up the good work. Keith
Keith Sherrard <sherrard@recorder.ca>
Smiths Falls, Ontario Canada - Content-type: text/plain Sat May 3 19:10:58 EDT 1997

I loved that poem. Everyone should read it before goingto any party, not just prom.
Leigh Ann <kerroppi10@AOL.com>
Fort Benning, GA USA - Content-type: text/plain Fri May 2 12:58:24 EDT 1997

Don't Forget To Smile!!! ;-)
Sasha Jade Azevedo <AZEVEDO@worldnet.att.net>
Charleston, SC USA - Content-type: text/plain Fri May 2 10:51:27 EDT 1997

it's sad
joan <joan8904@aol.com>
san leandro, ca USA - Content-type: text/plain Thu May 1 22:44:32 EDT 1997

I have heard this wonderful poem before in a group called TIGS at Passaic HighSchool. In charge of this group is Mrs. Minnie Hiller, who is a substance abuse counselor. TIGS is an alcohol and drug free group. This poem was read to us plenty of times, and then passed around the school for everyone to see.
Faterah J. Sykes <gsykes2656@aol.com>
Passaic Park, NJ USA - Content-type: text/plain Thu May 1 18:46:53 EDT 1997

I used to have epilepsy...I am doing a research paper on it now. I think it's important to have a page on epilepsy. Many people don't know what it is. And when you do need to know about it, it's hard to find. Thanks.
Yael Marwah
Hong Kong - Content-type: text/plain Thu May 1 06:57:04 EDT 1997

This is a very touching and sad poem about drinking and how it can affect your's and other people's lives just on choices. I would of published this peom because it is very good. Whoever did it is an excellent writer and should claim it. Goodjob!
Derek
oly, wa USA - Content-type: text/plain Tue Apr 29 23:44:41 EDT 1997

Your poem really touched me. As well as served its purpose. I do not plan to drink on prom night. It may sound gay but I think it is important to be alive.
K. Roses <KROSES3048@aol.com.>
Islip Terrace, NY USA - Content-type: text/plain Tue Apr 29 20:52:41 EDT 1997

I really loved it! It really sent a warm sensation to my heart and for that I want to thank you with all of my heart!
Bo Johnson
USA - Content-type: text/plain Tue Apr 29 13:56:43 EDT 1997

The stability one has partially lies in the hands of those who one loves. Silence on their part.. spawns ones ignorance. Everyone should stand tall, give hope, give love. Be happy with who one is, and what one has, don't contort to others social "standards". My parents are my best friends.. they have taught me well. And one phrase they taught me will always stay in my head. ~~~Be Kind. Be Happy. Work Hard.~~~ three little saying.. with endless meanings. I live by this rule now, and I see an open path to an endless future. My personal saying is do what you will.. but never harm another mentally or physically. Life is precious, it should not be cut short by anothers ignorance. To whoever wrote that.. excellent job :)
~eva~ <AquaLunar>
Pensacola, FL USA - Content-type: text/plain Sat Apr 26 21:27:20 EDT 1997

I think this is the most touching and interesting poem about prom night that I have ever read. They should not have labeled the writer as anonymous because that person should be selling this poem in a very well known book store that everybody goes to. I really enjoyed that poem and will read it to my older brother before he goes to his senior prom.
Wab736 <Wab736.@aol.com>
New Orleans , Louisiana USA - Content-type: text/plain Sat Apr 26 16:56:58 EDT 1997

I think this is the most touching and interesting poem about prom night that I have ever heard. They should not have labeled the writer as anonymous because that person should be selling this poem in a very well known book store that everybody goes to. I really enjoyed that poem and will read it to my older brother before he goes to his senior prom.
Wab736 <Wab736.@aol.com>
New Orleans , Louisiana USA - Content-type: text/plain Sat Apr 26 16:55:50 EDT 1997

The prom poem totally made me cry!
Sherri Ochotorena <BKNPINOY@AOL.com>
Brooklyn, NY USA - Content-type: text/plain Sat Apr 26 16:45:22 EDT 1997

If you have any fashion magazines, or tips send them to me.
Ashley Rather <Cheergrl77>
Oliver Springs, TN USA - Content-type: text/plain Sat Apr 26 12:35:02 EDT 1997

my only friend in 5th grade was killed by a drnk driver he hit them head on on their way home from a cub scout meeting and Ryan his father and 5 year old bro were all killed instantly his mother and babybro weren't ther because the baby was sick the drunk driver walked away from the accident
Erin Stanfield <EireRae@aol.com>
Everett , WA USA - Content-type: text/plain Fri Apr 25 15:30:19 EDT 1997

this is how my best and only friend died in 5th grade he was on his way home from a cubscout meeting and a drunk driver hit them head on and killed him his father and his 5year old brother the only reason his mom and baby bro aren'tdead is because the baby was sick with a cold so they stayed home
Erin Stanfield <EireRae>
Everett, WA USA - Content-type: text/plain Fri Apr 25 15:25:38 EDT 1997

Hi, I had an accident and have had alot of changes in my life. At first I was able to jump back into life and live. Then I started having alot of problems because of the head injury I had suffered. Now I sit at home and stare out of the window and hope that today I can do something. My life has changed so much and I want my life back. Thank you for the poems.
Jill <jill@interpac.net>
Oceanview, Hi USA - Content-type: text/plain Fri Apr 25 12:13:43 EDT 1997

I have lived with a seizure condition for the past 17 yr. Mine resulted from a fall off a horse when I was 14. Grand Malls didn't start till I had my third child. The good thing is I only have them in my sleep. That means only my husband has to deal with them. The next day I am very ill, but at least I don't have to worry about driving or seizuring at work! For that I am grateful
Janet Gibson <rgibson@sl.coastlink.com>
Kearns, Ut USA - Content-type: text/plain Thu Apr 24 18:13:00 EDT 1997

SHINING IN THE DARKNESS ININFOMATION
ANDREW KIEFER <10 DAVIS ROW>
PITTSBURGH, PA USA - Content-type: text/plain Thu Apr 24 16:00:19 EDT 1997

I received this in an e-mail from a friend and I think that it is great to have it here. I know that it opened my eyes to a different aspect of drinking that I never saw before. It isn't that you have to drink to get hurt. I know I'll think twice about drinking now.
Susan Elliott <PattiKnows@AOL.com>
Bloomington, IL USA - Content-type: text/plain Wed Apr 23 01:10:28 EDT 1997

I am a 19 year TBI survivor of a drunk driver, Thank you for your page
Dawn Schneider <dschnei@macconnect.com>
Knoxville, TN USA - Content-type: text/plain Tue Apr 22 22:46:52 EDT 1997

That was a really sad poem, and i think it will make anybody think twice before drinking and driving
Amber Benoist <Gemini1265>
Westmont, Il USA - Content-type: text/plain Tue Apr 22 17:36:29 EDT 1997

parent of 2 kids with tbi, Sp. ed. teacher, tbi, etc.
gene oneil <eoneil@sps.lane.edu>
eugene, or USA - Content-type: text/plain Mon Apr 21 16:51:57 EDT 1997

I think this waz very kool.
Chris <Machinehd@aol.com>
Bolton, CT USA - Content-type: text/plain Sun Apr 20 19:55:04 EDT 1997

i really loved that poam. it was like my sisters best friend.
Renee <RENEE 6767 AOL. com>
BOLTON, CT USA - Content-type: text/plain Sun Apr 20 19:51:44 EDT 1997

I would just like to say that that was the most beautiful peom I have ever readThat was so pretty
Kelli <Apollo.2631>
Brookfield, WI USA - Content-type: text/plain Sat Apr 19 11:22:19 EDT 1997

The Poem really moved me. I have gotten it several times through e-mail and have always passed it on to my friends. Also, I shared it with my health class at school. It is actually a very scary poem that really makes the wide scope of the hazards of drunk driving hit home. That girl could be any one of us. Whether or not you drink, it is a problem that concerns and endangers every person who gets in a car. Thank you for helping to spread this message to teens and adults throughout the world.
Julie Katz <JulieKatz@aol.com>
Miami, FL USA - Content-type: text/plain Fri Apr 18 23:02:49 EDT 1997

My wife was critically injured in a auto accident 11/21/96.I didn't get much help learning about TBI from doctors or others,but found there is a wealth of good information available here and elsewhere on the Web.
Frank Ford <fordf@jetlink.net>
Simi Valley, CA USA - Content-type: text/plain Fri Apr 18 17:24:49 EDT 1997

The most useful place I've found. God bless.
B.J. KENT <bjkent@gte.net>
Bothell, WA USA - Content-type: text/plain Fri Apr 18 01:17:13 EDT 1997

Wow, I like the things that were mentioned about hope. Hope is somehting that is needed to go on with life.
Kathleen <kcris106@makani.k12.hi.us>
Honolulu, HI USA - Content-type: text/plain Thu Apr 17 20:28:27 EDT 1997

I thought the Poem was really cool and it told me alot about how to get ready for my Prom.
Melynda <Mel Mel617>
Westport, MA USA - Content-type: text/plain Thu Apr 17 20:24:45 EDT 1997

I thought this was really meaningful, it really does happen, and maybeothers will learn from it.
Vicki <Sybrchc>
Elmwood Park, NJ USA - Content-type: text/plain Thu Apr 17 19:03:54 EDT 1997

this was really helpful thank you so much
alex <tygger197>
compton, ca USA - Content-type: text/plain Wed Apr 16 04:58:58 EDT 1997

Your poems are wonderful. I have a 19 yr. old son with TBI from an MVA 6-95. He is highly functional at this point. Is doing an oral presentation on TBI for a psyc class next week. He is closing with your poem "Life Has Changed". It is his favorite. Thanks for the great site!
Pat Stark <ostark@ssvec.org>
Willcox, AZ USA - Content-type: text/plain Mon Apr 14 00:04:41 EDT 1997

I believe that this poem is wonderful because it is simply true. I don't know how much more I can say that could possibly say more.
Teresa <Tessaa@aol.com>
Hayward, CA USA - Content-type: text/plain Sun Apr 13 19:07:35 EDT 1997

THIS POEM INSPIRED ME NOT TO DRINK AT PROM
BECKY FEINBERG <FEINBERG-LOBLEY@JUNO.COM>
PENSACOLA, FL USA - Content-type: text/plain Sun Apr 13 17:51:02 EDT 1997

I WAS HERE
SUZY ENFINGER <SUZY8115@AOL.COM>
PENSACOLA, FL USA - Content-type: text/plain Sun Apr 13 17:49:44 EDT 1997

When I first started to read that poem, I thought it was really corny and the girl in it was a total goody-goody. But then as the pom went on, it really started to hit me hard and I realized how really, really stupid it is to drink and drive. How can anyone dare risk someone else's life just for a cheap buzz???
Jennifer <WiddleOne>
USA - Content-type: text/plain Sun Apr 13 10:46:52 EDT 1997

that poem was very nice and sad and if only the people who drank read that they might not drink because they would realize what they were doing.I won't ever drink and drive thans to this poem and now i'll propably never drink because now I know how maney people it can hurt including yourself!Your poem really made a difference how i'll end my prom and every party i go to,it made a difference in me and propably all the other people who have read your poem.Thank you for writting this poem because you propaly will save many lives with it and more people will becareful what deceisions they make about prom night and party nights.the situation of the poem is very sad,and very true!I just want say your poem was very touching and beautiful,you should wright more poems,I hope I encouraged you in doing that.I loved your poem,and like I said you should wright more!Keep up your faith and your good work it will get you somewhere someday. I loved your poem!!!!!!!!!!!
Ashley
USA - Content-type: text/plain Sun Apr 13 09:18:22 EDT 1997

that poem was very nice and sad and if only the people who drank read that they might not drink because they would realize what they were doing.I won't ever drink and drive thans to this poem and now i'll propably never drink because now I know how maney people it can hurt including yourself!Your poem really made a difference how i'll end my prom and every party i go to,it made a difference in me and propably all the other people who have read your poem.Thank you for writting this poem because you propaly will save many lives with it and more people will becareful what deceisions they make about prom night and party nights.the situation of the poem is very sad,and very true!I just want say your poem was very touching and beautiful,you should wright more poems,I hope I encouraged you in doing that.I loved your poem,and like I said you should wright more!Keep up your faith and your good work it will get you somewhere someday. I loved your poem!!!!!!!!!!!
Ashley
USA - Content-type: text/plain Sun Apr 13 09:15:25 EDT 1997

Your poem really hit me hard. I've recently been through a very difficult situation in which I have been carrying a huge burden. The pain, I don't think, will ever go away, but now I know I'm not alone. Thanks
Jamie Mitchell
USA - Content-type: text/plain Sun Apr 13 03:18:32 EDT 1997

this is a very sad poem that hits you with reality.....i PROMISE, i will never drink and drive!
kara freeman <jeepgirl79@aol.com>
fontana, CA USA - Content-type: text/plain Sat Apr 12 16:20:19 EDT 1997

I'm an RN who currently practices in psychiatry and previously in neuro..I have a son who suffered a TBI at age 20 as a result of a ruptured aneurysm. I agree with a previous comment regardingthe importance of one physician providing care. It seems that we are developing new medicatons for seizures, but that manyare not that well-informed on medication and seizure management. Currently my sonhas had Dilantin discontinued and started Tegretol. He is now experiencing hair lossand ongoing rash. A GP, neurologist and dermatologist all concur...STRESS!!It seems that many others have a similar problem with medication management. I'd like to hear from anyone with similar effects from Tegretol. I am somewhat surprised (and disappointed) to hear that somany people continue to experience the stigma associated with a TBI or seizure D/O. I'm so glad to see your efforts at creating this supportive forum!Appreciate responses on medications.
Georgia <faytht@onlineimage.com>
Elmira, NY USA - Content-type: text/plain Sat Apr 12 12:50:11 EDT 1997

Wow. It's beautiful.
Sarah Pemelton <Guineve126@aol.com>
Mercedes, TX USA - Content-type: text/plain Sat Apr 12 08:49:55 EDT 1997

I loved your poem, It meant so much to me. I am taking a poetry class in school and I read it to the class. That is a great way to get the message to people to not drink and drive! Thankyou so much, the poem was GREAT!
Beth <Libby@aol.com>
Sterling, MASS USA - Content-type: text/plain Sat Apr 12 08:33:50 EDT 1997

I've read this poem about 5 times now, and i've cried every time. It is very touching and an exellent poem. I live in NC and just recently in a nearby city, a four year old girl was killed by a drink driver. It was very unforunate, because she was just a little girl
holly
nc USA - Content-type: text/plain Fri Apr 11 22:30:55 EDT 1997

Interesting. Keep up the good work.
Day R. Williams, Esq. <daywillia@aol.com>
Carson City, NV USA - Content-type: text/plain Fri Apr 11 22:07:14 EDT 1997

The poem regarding the drunk driver was passed on to mevia a friend. I passed it on to Debbie for all to see. My daughter was involved in a car accident last July - and was t-boned by a driver who had been drinking. I thank God every day that she made it - yet, this poem makes me realize every moment how lucky I am to still have her. She now has severe TBI - and is fighting back with every once of power she has - and is winning.I implore all who read this poem - to pass it on - let others read it - the individual who wrote that poem expresses all that each of us as parents, grandparents, aunts, uncles and friends can not always express. Thankyou Debbie for entering it into your section of poems. Reading the comments regarding that poem - if it can prevent just one innocent person from being hurt or worse like my daughter was - then all of us have won.Again I Thank You and add to say - God bless you Debbie.
Sandi Porter <esporter @vianet.on.ca>
Sprucedale, Ont Canada - Content-type: text/plain Thu Apr 10 22:30:35 EDT 1997

This poem was sent to me as forwarded mail under the title DEATH OF AN INNOCENT. Whatever you call it, the poem really puts things into perspective and there are certain lines that I can't help but cry over. It's a great poem.
Jennifer Kempton <Linus2690@aol.com>
Sewell, NJ USA - Content-type: text/plain Thu Apr 10 19:11:11 EDT 1997

I'm the victum of an attempted murder. I was hit on the head with a hammer by someone who was trespassing on private property. The person's accompliss punched me in the face and I fell back hitting my head on the pavement.I did not know theses people. While I survived the attempted, after brain surgery. I had a seccure a year laterwhich cause me to fall & have another head injury causing me to have a stroke. Because of this I became disabled & lost my job as a civil servant in Florida. The State has refuse to pay me my disability because it says I need 2 Fla. license doctors to confirm my disability. I find this quit perplexing, since I work for a Fla. cnty. that required 2 doctors to say I was unfit to continue to work. One of my assaillents got decapatated while out on bail ; the other spent just 13 days in the county jail. When will the State of Florida provide me with the justice I am entitled to.
George Demas <gjdemas@ap.net>
Santa Rosa, CA USA - Content-type: text/plain Thu Apr 10 18:49:27 EDT 1997

i really love that poem...did u really write it? i've seen it passed around on the internet and even at school...great poem
bess <bhc7681@aol.com>
chappaqua, ny USA - Content-type: text/plain Thu Apr 10 16:57:44 EDT 1997

Debbie, You wrote that poem? That is SO good! I write a lot of poems and I always seem to write about sad and depressing happenings too. For school (8th grade) my teacher has hadus try to write of that sort, so, I guess I am doing okay! Great Job once more, I look forward to
Callie <Callie1497@aol.com>
Noblesville, IN USA - Content-type: text/plain Thu Apr 10 16:12:19 EDT 1997

I liked your poem and thought it was really sad. I'm sorry for the lost people that it has happened to also. It is a real same that not enough people will listen when somebody tells them not to drink and drive and they do it anyways and someone innocent has to pay. Whoever wrote the poem has a wonderful ability to make people feel what they are talking about and the poem has been copied and given out at our school hoping that people will listen and hopefully not drink and drive. I just wanted to thank you for making people aware of things like this and maybe if we tell them enough that they will finally see what we are trying to tell them is that they don't need to drink or do drugs for that matter to have fun. That there are plenty of ways to have fun besides drinking and that drinking doesn't make anything better it just makes things worse because usually you will do something that you will regret later on.
Lori Eller <Lori B E>
TN USA - Content-type: text/plain Thu Apr 10 16:04:52 EDT 1997

the poem is very true the whole point to prom is to have a time to remember drinking doesn't exactly make it a time to remember
rachel negron
md USA - Content-type: text/plain Thu Apr 10 15:20:10 EDT 1997

This poem is not really called prom it is called DEATH OF ANINNOCENT and it is annonomouse. It is also not exactly about prom but it can be taken that way. I think this poem was actually started by SADD.
Sarah <SayMaye7@aol.com>
NY USA - Content-type: text/plain Thu Apr 10 11:39:39 EDT 1997

Touching poem it was very deep.To be exact it was really deep
ANRNY <Silky128@aol.com>
Baltimore , Md USA - Content-type: text/plain Wed Apr 9 18:22:40 EDT 1997

I have just found out I have epilepsy at the age of 28. I do not know too much about it yet, so if anyone would like to write to me to discuss this, I would greatly appreciate it.Thanks so much for this site and the stories and poems.
Dawn Coder <dcoder@niven.imsweb.net>
Port Richey, FL USA - Content-type: text/plain Tue Apr 8 21:04:37 EDT 1997

I just wanted to say that it was a very touching poen and the person who wrote it definatly meant it from the heart
Blair Becker <Smile02468@aol.com>
Linden, CA USA - Content-type: text/plain Tue Apr 8 19:49:16 EDT 1997

The poem was a really great way to get teens to realize that drinking along with driving is not cool.This is a sad situation that could happen to any of us. So teens, when prom rolls around, please remember this poem and "think before you drink"! It might just save a life.
Natalie Redmond <chasmo23>
georgetown, il USA - Content-type: text/plain Tue Apr 8 18:40:20 EDT 1997

Thank you for the wonderfull things on line i enjoyed reading them!:-)
jamie redding <MReddi>
Hastings, Mn USA - Content-type: text/plain Tue Apr 8 15:52:12 EDT 1997

Thanks for your page.
Emma
Kungälv, Sweden - Content-type: text/plain Tue Apr 8 03:40:06 EDT 1997

:)
Krissy M <Kymosobi@aol.com>
Portage, IN USA - Content-type: text/plain Mon Apr 7 16:20:07 EDT 1997

Over the last 10 years I have declined from Genius computerelectronics supervisor to unemployable. I now spend all of my time on the internet looking for a solution. Wonderful sites like this give me hope and courage. Thanks....
Elviin Burnett <burnettx@concentric.net>
Baytown, TX USA - Content-type: text/plain Mon Apr 7 10:29:27 EDT 1997

I wish more people would read this poem. It is very sad and very true. Maybe if more people would read it they would come to that realization and there would be less lives taken because of drinking and driving.
Shannan <ShagyG@aol.com>
USA - Content-type: text/plain Mon Apr 7 04:35:30 EDT 1997

You have developed a wonderful site that is both supportive and educational. I would appreciateany information or sharing of experience with the medicationTegretol and side effects of alopecia and a continued itching rash? This young man has been told that theseproblems are "stress" related. I would very much appreciate any experience orinformation anyone visiting this site could send me at faytht@onlineimage.com.(Keep up the great work!)
Georgia <fayth@onlineimage.com>
Elmira, NY USA - Content-type: text/plain Mon Apr 7 01:03:58 EDT 1997

This is a great poem. It's too bad it is actually true sometimes. For my school, I am involved in a club called Sigma Alpha Delta. It is against drinking, driving, and drugs. We are planning the pre-prom activity. On a field trip we took for this club, during the day, they read this poem. It really made me stop and think. I have never drank, or done any drugs. And I don't plan on ever doing any of this stuff. My mom says I will at my wedding or something, but I've made the decision to never do any of this stuff. I just find no purpose for this. I wish more people would just stop and think, then this poem would not be true. It's too bad it is true.-Nicole Cone
Nicole Cone <nicole2417@aol.com>
Antioch, IL USA - Content-type: text/plain Sun Apr 6 23:19:58 EDT 1997

Hi, Im doing a report for school on Epilepsy and was looking for info and found you. I thought your poems where great.
Kari Jean
Richmond, MWME USA - Content-type: text/plain Sun Apr 6 17:24:04 EDT 1997

U should never drink un less u r old enough. I would never drinkcause it makes ur breath stink, and makes u say stupid things.So watch what u do! Love, Priscilla and Natalie ( 16/f twins )
Priscilla <SexyGrl246>
NY, NY USA - Content-type: text/plain Sun Apr 6 13:54:46 EDT 1997

I THINK YOU SHOULD ALWAYS THINK BEFOFE YOU DRINK!!IF YOUR UNDER AGE YOU SHOULDN'T DRINK ANYWAYS BECAUSE ITONLY GETS YOU IN TROUBLE.SO REMEMBER THAT WHEN YOUR IN THEHOSPITAL OR JAIL AND YOUR PARENTS HAVE TO COME GET YOU!!!
TAMIKA HIER <TBrown9488@aol.com>
Ontario, Ca USA - Content-type: text/plain Sun Apr 6 12:57:15 EDT 1997

Love the page.
Brian Carty
Ottawa, Ont - Content-type: text/plain Sun Apr 6 01:15:51 EST 1997

I know someone that drank and then drove, he (the driver) wasn't wearing his safety belt but is still alive and not even in jail, he wasn't the one killed. His neice (the pasenger) was smart... she wore her safety belt, but that didn't help her when he crashed and she was killed instantly on impact! Please... it is an over used saying but so true, please don't let friends drive dunk! =)
Elizabeth <LoveGuard>
Loveland, Oh USA - Content-type: text/plain Sat Apr 5 18:38:12 EST 1997

IT MADE YOU STOP AND THINK ABOUT WHAT EVERYTHING MEANS TO YOU. HOW MUCH YOU VALUE THE LIFE THAT YOU HAVE.
MELANI COX <JJMJSKC@AOL.COM>
EAST MOLINE, IL USA - Content-type: text/plain Sat Apr 5 13:57:07 EST 1997

That poem made me cry, and I never cry! It was amazing!
Mary
USA - Content-type: text/plain Sat Apr 5 13:54:47 EST 1997

Hey I love your web site...I am goin to prom as a Freshman and i was so nervous about what to wear, my hair, my act...You guys really helped me out. Thanks, i know the night will be great!!!
Ashleigh Barton <SunShinR>
USA - Content-type: text/plain Sat Apr 5 10:40:18 EST 1997

It makes u think!!!!
Ellen <Lilypad962@AOL.COM>
Rhinebeck, NY USA - Content-type: text/plain Sat Apr 5 02:04:25 EST 1997

THIS IS A WONDERFUL PLACE
Tima Kozrosh <Lily36@aol.com>
Haledon, NJ USA - Content-type: text/plain Fri Apr 4 22:24:01 EST 1997

This poem was posted all over our HS for our dive smart rally. It was read at an all student assembly and drew tears from a few and made all of us think when our parents say:"It's not that we don't trust you to drive safely, it's the other idiots out there."
Brianna <Breezy4582@AOL.com>
Cascade, CO USA - Content-type: text/plain Fri Apr 4 20:48:33 EST 1997

This poem was posted all over our HS for our dive smart rally. It was read at an all student assembly and drew tears from a few and made all of us think when our parents say:"It's not that we don't trust you to drive safely, it's the other idiots out there."
Brianna <Breezy4582@AOL.com>
Cascade, CO USA - Content-type: text/plain Fri Apr 4 20:47:50 EST 1997

I received a traumatic brain injury in Sept.of 94 and boy does it suck!! (very traumatic!)
Barry Freier <bfreier@voyager.net>
Okemos, MI USA - Content-type: text/plain Fri Apr 4 12:25:15 EST 1997

I received a traumatic brain injury in Sept.of 94 and boy does it suck!! (very traumatic!)
Barry Freier <bfreier@voyager.net>
Okemos, MI USA - Content-type: text/plain Fri Apr 4 12:25:11 EST 1997

I am so grateful for finding this site. I am a survivor of a subdural hematoma sustained in a car crash just over four years ago. I walked away from the collision with a headache and confusion. It was just more than a month later, after right-side paralysis began that the injury was diagnosed and the blood was drained in surgery. I have returned to work, but not without a number of problems for my family and myself. All my energy goes into maintaining work life. There seems to be nothing left for anything else! I am grateful for the recovery to date and for the support I have received from family and friends (though many friends seem to have gone!) I have had two neuropsychological exams and some support from other survivors. It is, however, a lonely life and I can relate so readily to what I've read in your poetry and that written by Larry Huisingh. Your prayer, Debbie, was exacltly what I needed. Thanks so much.
Larry Carlson <lcarlson@sasked.gov.sk.ca>
Regina, Sk CANADA - Content-type: text/plain Wed Apr 2 16:02:28 EST 1997

I realize that this cog rehab is mostly for Doctors and Therapistbut it would be nice if a brain injured person that wants to dosome of the rehab on their own could afford your computerizedor written versions. I am a survivor of a traumatic brain injurythat is on social security and disability... therefore these rehab aids are out of reach on my budget. Any Ideas?!?!?!?THANKS!
s davis <sdavis@empire.net>
Nashua, NH USA - Content-type: text/plain Tue Apr 1 20:41:05 EST 1997

Like the site very much!!! I do think this site could use some humor :-) I have had right temporal lobe surgery twice(liked it so much I went back) still average 8 seizures a month "I guess it could always be worse?" and one I do know is laughter is the best medicine...Thank you, keep up the good work and God bless.
Steve Moore <selluahome@fuse.net>
Cincinnati, Oh USA - Content-type: text/plain Mon Mar 31 21:39:50 EST 1997

This poem was excellent & I feel that every teenager should read this and realize thatthis a real life situation. I recently had a past friend pass away in a drinking & driving accident. Even though I hadn't talked to her for a couple of years it was still hardto cope with the loss of her. Thanks again to whoever submitted this poem it made me think about lots of things!
DeeDee Pollman <polldee@feist.com>
Maize, KS USA - Content-type: text/plain Sun Mar 30 23:22:48 EST 1997

I recently been diagnoised with epilepsy, and I have been having a hard time dealing with my peers making fun of me when I have seizures at school, ( I am fifteen years old) I have been having so many seizures at schoola nd I have only had one at home. I am on the medication Depakote, and They have raised it so many times, I don;t know where I am at. Anyways it would really mean alot to me if any kid my age is going throught the same thing I am or just has epilepsy, if they could e- mail me,a nd so we can talk.
Jamie Frank <BFrank8299>
Cedar, MN USA - Content-type: text/plain Sat Mar 29 19:09:49 EST 1997

Just visiting here looking for information. My son was in a minor Auto accident and is now at the point that he cannot work. He is no longer living in my area but I mail him the information that I can find. Insurance companies and SS. are dragging him through a lot of B.S. He was a Dr. of Chiropractic prior to this accident. The insurance company wants to settle for peanuts.
David Brown <GBrown5850@AOL.com>
Broomfield, CO USA - Content-type: text/plain Sat Mar 29 15:21:39 EST 1997

I am a student in Therapeutic Recreation interested in TBI.
angela wild <344rpe6@cmuvm.csv.cmich.edu>
Mt pleasant, MI USA - Content-type: text/plain Sat Mar 29 14:39:01 EST 1997

I am 37 years old, and seizure free for almost 2 years. I've had epilepsy since I can remember. To me, this is "normal". I had spinal meningitis as an infant, which left scar tissue on my frontal lobe. I've had good times, when I'd have maybe 1 seizure a year. Then about 3 years ago, I started having them everyday, a few times a day. I was a prime candidate for surgery. But thanks to a determined doctor, and some new drugs on the market, I am proud to say that I completed graduate school, and am in my second year of teaching (a family who supports me makes it a lot easier). Life does not have to stop because you have epilepsy. My folks never treated me any differently than any other "normal" child. And that is what helped me to overcome the stigma that society often puts on people with neurological disorders. I am not ashamed to tell anyone that I have epilepsy. Hang in there!
Teri Rodriguez <tlr59@worldnet.att.net>
Memphis, TN USA - Content-type: text/plain Sat Mar 29 11:38:28 EST 1997

This truly has been a heartwarming experience. I am 14 years old and looking towards a career in epilepsy research. This page has definately opened my heart in ways nothing else could.
Candace Dowling
USA - Content-type: text/plain Thu Mar 27 20:11:52 EST 1997

I am 41 years old. Seven years ago, I was beaten and didn't reach the hospital until almost two days later. By that time, I had a blood clot resting on the left side of my brain that cause a stroke on my right side. After a year in the hospital, and two years of Rehab., I can now, surf on the Net and be telling you something that I haven't and don't tell Most. I am still working on my learning abilities. With that in mind, would you be able to find time to connect me to sites on the Net, on cognitive memory techniques and skill builders. That would help me a lot. Thank you for you time. Maybe, one day, you'll visit my site. Cindy Lindquist
Cindy Lindquist <mrapp@alaska.net>
Anchorage, ak USA - Content-type: text/plain Thu Mar 27 04:24:42 EST 1997

I was just searching through prom issues for my school newspaper and came across the poem about the poem on the innocent victim. I would just like to say that this is being spread through my school already and this is the second time I've come across this. I plan on printing it up and showing it to people that do drive drunk, it might have some impact. I've ridden in cars where the drivers are drunk millions of times and the scary thing is I am not the only one. I was in an accident recently for my first time when the driver was drunk and they didnt even test him, he didnt admit to it till after we asked him. I cant tell you how lucky I am. Thank you for making this aware.
tiffany <tiffany2utech.com>
lompoc, ca USA - Content-type: text/plain Thu Mar 27 00:09:28 EST 1997

Christine-Inch by inch is a cinch;yard by yard is hard.L.S.D.(Dave Farwell)-Into the dawns fading light I go. I aways look back and remeber the way things were and how much I want to be back there,be normal, be my self but Mcdonald road took those things from me and I hateit for that.
L.S.D.(DAVEFARWELL)-CHRISTINE BARNES <ab.hos.ponoka@ccinet.ab.ca>
Ponoka, AB Canada - Content-type: text/plain Wed Mar 26 15:12:04 EST 1997

T'WAS AVERY GOOD SITE BUT THEY SHOULD INCLUDE HUMOUROUS POEMS AND MORE SERIOUS POEMS ABOUT THENINTIES OTHERWISE IT WAS NOT BAD
jarrad o'donohoe <trent@iap.net.au>
perth, WWW AUSTRALIA - Content-type: text/plain Wed Mar 26 07:48:49 EST 1997

I jhave had two closed head injuries since 1979, the first one in an industrial accident. Shortly after this closed headi began to hallucinate terribly. Doctors never asked if i had a head injury so i did not connect the two. This terrible ordeal went on for a decade, then in 1989 i took a granmalsiezure on the same job falling back striking my head againcausing a subdural hematoma. Now in 1990 i began to get some answers the ten year period i was hallucinatingi was taking partial complex siezures, doctors estimate i took over 10,000 of this type of siezure. I take dilantin for the siezures and have been siezure free since 1990. Butthe story does not end here, since the 1979 head injuryevery time i dream of anything to do with aviation there willbe a plane crash. Doctors did not believe me they said no way, but when i started phoning them hours to days beforea plane crash thier doubts soon vanished. Now after the head injury of 1989 things began to change, now i can predict specific events. I have walked up to total strangersi new thier name, where they worked, even what they did for a living. I have seen nieghbors killed in automobileaccidents three months before it would take place.i would be asleep dreaming of a specific person dialing the phone miles away getting ready to call me, and whenthe phone would ring and wake me up it would be that exzact person. I still have the aviation dreams if only i knewwhat aircraft, all i know is in 1979 i was 21 years old withso much to look forward to i did not ask for epilepsy or these visions i continue to have i just wish it was all a baddream and i would just wake up.seen
B stan
Pgh, PA USA - Content-type: text/plain Tue Mar 25 03:07:51 EST 1997

I jhave had two closed head injuries since 1979, the first one in an industrial accident. Shortly after this closed headi began to hallucinate terribly. Doctors never asked if i had a head injury so i did not connect the two. This terrible ordeal went on for a decade, then in 1989 i took a granmalsiezure on the same job falling back striking my head againcausing a subdural hematoma. Now in 1990 i began to get some answers the ten year period i was hallucinatingi was taking partial complex siezures, doctors estimate i took over 10,000 of this type of siezure. I take dilantin for the siezures and have been siezure free since 1990. Butthe story does not end here, since the 1979 head injuryevery time i dream of anything to do with aviation there willbe a plane crash. Doctors did not believe me they said no way, but when i started phoning them hours to days beforea plane crash thier doubts soon vanished. Now after the head injury of 1989 things began to change, now i can predict specific events. I have walked up to total strangersi new thier name, where they worked, even what they did for a living. I have seen nieghbors killed in automobileaccidents three months before it would take place.i would be asleep dreaming of a specific person dialing the phone miles away getting ready to call me, and whenthe phone would ring and wake me up it would be that exzact person. I still have the aviation dreams if only i knewwhat aircraft, all i know is in 1979 i was 21 years old withso much to look forward to i did not ask for epilepsy or these visions i continue to have i just wish it was all a baddream and i would just wake up.seen
B stan
Pgh, PA USA - Content-type: text/plain Tue Mar 25 03:02:22 EST 1997

Wonderful to see what is happening in other parts of the world.
Brain Injury Association of NSW AUSTRALIA
NSW Australia - Content-type: text/plain Sun Mar 23 19:39:56 EST 1997

Parents of Christine, a survivor in the 17th month of her fight back. TBI, brain stem, skull fracture, neurosurgery to remove clot. Appx 45 day coma.This site is a sample of what good people with a good tool can do. Congratulations to the origninators. We need each other. Pleased to chat.
Reg and Janet Barnes <rbarnes@yellowhead16.net>
Kitimat, BC Canada - Content-type: text/plain Sun Mar 23 16:04:16 EST 1997

As a 4th Year Education Student who also has a friend suffering TBI, I am interested in researching educational / rehabilitation for TBI students. Current research, results, methods are of interest. Any assistance would be greatly appreciated.
June Chan <junechan@ca.com.au>
Sydney, Australia - Content-type: text/plain Sun Mar 23 08:20:44 EST 1997

I am a medical student preparing for USMLE.Before coming toUSA,I was working in a neurosurgical ICU,mostly with acutetrauma patients for 2 years.I find this site interesting asa beginer,in USA.Hope to visit your site often.Please addmore images.
Dr ABHIJEET GORHE <gorhe@worldnet.att.net>
sunnyvale, CA USA - Content-type: text/plain Fri Mar 21 21:52:38 EST 1997

I am a medical student preparing for USMLE.Before coming toUSA,I was working in a neurosurgical ICU,mostly with acutetrauma patients for 2 years.I find this site interesting asa beginer,in USA.Hope to visit your site often.Please addmore images.
Dr ABHIJEET GORHE <gorhe@worldnet.att.net>
sunnyvale, CA USA - Content-type: text/plain Fri Mar 21 21:52:35 EST 1997

I am 26 years old and I have had epilepsy since I was 18.I have just been to my doctor. I have my petit mal seisureoften. We don´t seem to find any solution on how we mix tegretol and neurontin together. In the morning I take 600 mg of tegretol and 600 mg neurontin. In the evening I take 800 mg tegretol and 600 mg neurontin. What am I going to do?
Robert Johansson <rotjon95@student.umu.se>
Umea, SWEDEN - Content-type: text/plain Fri Mar 21 08:17:28 EST 1997

none so far
purerican <pure@aol.com>
orange park, fl USA - Content-type: text/plain Wed Mar 19 21:34:47 EST 1997

I lived for 35 years with a brain injury(serious)so I no it didn't kill me yet.I think it was partly because it went unnoticed.It was there all and everything I did pointed to it. I only wish what all I forgot I could remember.I feel sorry for the ABI people and twice as sorry for all the families of ABI person's.We need more understanding on this problem. My email is
Keith Sherrard <sherrard@recorder.ca>
Smiths Falls, Ontario Canada - Content-type: text/plain Tue Mar 18 20:42:51 EST 1997

I am a pediatric certified registered nurse and my daughter is a TBI survivor. She is eight years old and sustained the injury at 4 years of age. She has come a long way and is constantly progressing even the doctors did not think that she would live, much less progress. I think that this siie is wonderful and educational. Keepup the great resources.
michelle Tracy <jtracy7666@aol.com>
pavilion, ny USA - Content-type: text/plain Tue Mar 18 14:22:33 EST 1997

I think this is wonderful, I wish that there was a website like this for other diseases.
Amisha Agrawal
Oakville, Canada - Content-type: text/plain Mon Mar 17 20:10:46 EST 1997

I am the mother of a TBI patient. My daughter was 18 at the time she was assaulted. She sustained severe brain damage in 1991. She is now 24 years old, has lost her short term memory, her judgment, parr of her eyesight and has residual seizures from all the brain surgeries she had to go through. I wish to thank you for establishing this Guestbook. It is certainly a forum for sharing the emotions that only survivors and families of survivors of TBI/ABI patients would understand. Hope to visit again soon.
Aurora Rothery <Aurora_Rothery @gap.com>
So, S,F,, CA USA - Content-type: text/plain Mon Mar 17 14:52:55 EST 1997

I am 30 years old and have had epilepsy my entire life.I recently went through brain surgery in January 1997 andI feel great! I had a right temporal lobectomy in which theyremoved the hippocampus and amygdala. I feel like NOTHINGis missing! I have been seizure-free since surgery and amfinally having success with ONE medicine instead of 2 or 3.I'll be more than happy to share my experience with anyone who is considering surgery or has had surgery also. My twodoctors have changed my life tremendously!Tracytwascher@flash.net
Tracy <twascher@flash.net>
Carrollton, TX USA - Content-type: text/plain Sun Mar 16 11:19:29 EST 1997

My son was 10 hours old when he had his first siezure, my husband and I were devistated.He was put on Phenobarbital but even though they kept increasing it the seizues didn't stop.My son has been through so many tests that I want to cry every time. The first seizure hehad in front of me he turned blue...I thought he was dead. He's now on Mogadon and so farhas been seizure free for 7 weeks (fingers crossed!!!) Thanks for all the information thissi a wonderful web site!!!
Kimberley Corcoran
Montreal, Canada - Content-type: text/plain Sat Mar 15 15:59:55 EST 1997

Fantastic web page and it's wonderful to hear about experiancesof people who have had brain injuries.good stuff
JacintaRowan <No E mail>
Victoria, Australia - Content-type: text/plain Sat Mar 15 01:49:50 EST 1997

I am going to be 30 in May. I was born with a TBI compounded by epilepsy. My TBI was not official until I was 9mths. old. I have just started to come to grips with how it has affected my life. My confidence has both helped and hindered how I deal with my TBI.
Chris Range <crange@sysnet.net>
Washington, DC USA - Content-type: text/plain Fri Mar 14 21:44:38 EST 1997

We are learning about traumatic brain injury and are interested in your web site. Keep smiling.
UBC speech/language students
Vancouver, BC Canada - Content-type: text/plain Thu Mar 13 14:41:23 EST 1997

I am 17 years old, had a brain injury at the age of 3
Max McGregor <rocky@gamewood.net>
Danville, Va USA - Content-type: text/plain Wed Mar 12 20:36:27 EST 1997

I suffered from a seizure disorder that was triggered by stress. I had to deal with the constant teasing by my peers and a learning disorder which came from the disorder. It hasbeen six years since my last seizure, but the only thing that I still retain from my seizure disorder is my learning disorder.
Ben Trotter <bntrotter@utc.campus.mci.net>
Kingsport, TN USA - Content-type: text/plain Wed Mar 12 15:36:23 EST 1997

I am a brain injury survivor, I am only 21 years old, my goal is to help others, and educate the younger generations on the seriousness of a brain injury. This has all been good therapy for me in the meantime.
ERIC MIKLOS <miklos@nbnet.nb.ca>
MONCTON, NB CANADA - Content-type: text/plain Sat Mar 8 19:12:43 EST 1997

This page is very useful for me. I am a physiciant that works wiht mentally retarded persons with epileptic seizures.
Xavier Cambrodí <cambrodi@redestb.es>
Lleida, SPAIN - Content-type: text/plain Sat Mar 8 18:32:03 EST 1997

our son who is now 34 yrs old, has been and still is on dilantincelontin, mysoline and depakene. He has never been undercontrolconcerning seirues. He has lost his ability to talk or walk.He also has a surgery so called "cc section" at 7 yrs. The doctors and the so called medical profession has been to no avail.The ABC item "First Do No Harm" that was aired severeal weeksago, paralleled our early situation. We are into a desperate situation.Anyone along these lines or suggestions please e-mail me We would appreciate it.
N George Abdo <ngeorge@busprod.com>
Tusla, OK USA - Content-type: text/plain Sat Mar 8 11:09:53 EST 1997

My father is an survior of a TBI and this site has reminded me that we as a family are not alone in this world. The one pieceof advise I can give is that never give up. The love and supportof family and friends can do wonders in a family with TBI. God bless everyone and their families.
Theresa Stang <tastang@csb/sju.edu>
St. Joseph, MMmn USA - Content-type: text/plain Fri Mar 7 14:29:18 EST 1997

My father is a survivor of a TBI. My family has been hit hard with everythingthere is to know and all the medicines that he is on. The love and supportwe get from one another is incredible. Without it we would have never beenable to continue to care for my dad.
Theresa Stang <tastang@csb/sju.edu>
St. Joseph, MMmn USA - Content-type: text/plain Fri Mar 7 14:22:47 EST 1997

I have found this to be one of the most interesting and educational sites i've been in....i get more information here than in most other areas designed to get messages across. This site also teaches that we are all united in our common battle, regardless of where we are physically, emotionally, or nationally....there are also ideas that would be most helpful for clinicians and physicians in dealing with their clients... i would recommend that anyone working with people with seizures at least see the content list of this site....Thank you
Mary Kate S. <MurKat38@aol.com>
Buffalo, NY USA - Content-type: text/plain Thu Mar 6 20:02:23 EST 1997

Bravo! You've developed a wonderful web site!
Margaret Chopel
USA - Content-type: text/plain Tue Mar 4 02:24:58 EST 1997

Thank you for a page well done!! I am an editor of a local newsletter designedfor TBI survivors, families and friends- I am currently writing an article regardingTBI resources over the net and I will definitely mention your web page! Thank youfor being an advocate and would like to dedicate the following quote:"If we all cease to participate in the sun- all will wither in darkness"
Gerard Manuel, CTRS <kgmanuel@earthlink.net>
San Jose, CA USA - Content-type: text/plain Tue Mar 4 01:40:41 EST 1997

I have had Epilepsy since I was 15 Months old, I am now going on 22 years of age. My doctors have tried every kind of medication possible to control my seizures. After 20 years my doctor finally found a drug called Vigabitron (an experimental drug form Europe not approved in the U.S. yet) and I am seizure free for one year and four months today. I have had a lot of side effect from this drug and I get so depressed sometimes because there is nothing I can do but accept the fact that I have this condition and I am going to have this problem. I ask myself "Why is this happening?" I hop everybody else whether it be male or female , young of old that has Epilepsy will some day be cured.
Jennifer Levengood
Reading, PA USA - Content-type: text/plain Mon Mar 3 12:05:44 EST 1997

I feel sorry for those who get epilepsy for the first time I know how painful it is when you have your first seizure I had mine when I was 7yrs old and I thought I was going to die but I didnt I survived and so will you just believe in god and believe in your selfand may god bless your soul.
mike clark
centerville, in USA - Content-type: text/plain Fri Feb 28 14:48:15 EST 1997

I really feel sorry for the people who first get epilepsy i know how frightning it is when you have your first seizure I had my first when i was 7 yrs old and I thought I was going to die. If you come down with epilepsy talk with some one you know.and may god bless
mike clark
centerville, IN USA - Content-type: text/plain Fri Feb 28 14:34:02 EST 1997

I am a registered nurse and have a brother-in-law whosurvived a direct hit of lightning almost 2 years ago. We aretrying to do all we can to get him back to as normal aspossible. All the things that have happened since his freakyaccident have put an immense stress on all of us who love him.I would be appreciative for any information I can find as Irefuse to give up and let him live in a group home as has beensuggested recently. He is 50 years old and a former computeranalyst. Thanks! Keep up the good work as this is a superwebsite and my best to all of you!
Pam T. <PThom99411@aol.com>
Perry, Ia USA - Content-type: text/plain Wed Feb 26 00:36:31 EST 1997

Been to your website while surfing epilepsy sites, finally tooktime to add to your guestbook. Great website, now I have to gowant to read your poems, everyone raves about them.thanks for your site, a lot of people seem to be getting great supportfrom your work here. If I can be of any service PLEASE let me know and will help any way I can. Sincerely Bill Bratton DDS
Bill Bratton DDS <wrbratton@hotmail.com>
Pollock Pines, CA USA - Content-type: text/plain Mon Feb 24 22:41:54 EST 1997

In reading the poem "I tried" it brings back thoughts I had during my medical trials. During this period I kept asking myself why I had to go thru this mess. I learned that I had an exceptional amount of help from outside sources that I wasn't aware of. I kept telling myself I didn't crybut came so close many times. My age said don't get emotional, but it was difficult to say the least. My neurosurgeon was the strongest force I had. He made me realize that I was able to handle this mess and I could SURVIVE!
Ken Parker <pahkuh@acadia.net>
East Holden, ME USA - Content-type: text/plain Sat Feb 22 19:27:14 EST 1997

My husband had uncontrolled epilepsy. He has Tonic-Clonic, Complex-Partial and Absence seizures. Unlike most of the people on this page, his was caused by his pre-mature birth. It became active when he reached purbity. When he was 25 it became uncontrolled (one year after we were married). We have been married 18 years and have a 10 year old daughter. His epilepsy is not hereditary. The older he becomes, the worse it gets. He had a partial right temporal lobectomy. He has been on expiramental drug therapy. All of this was preformed at The Epileptic Center at UCSF. At home in Lake Tahoe, we have had problems with doctors. One neurologist (the only one in town) has told us he was not having absence seizures, that it is all in Toms head. This diagnosis was with NO testing. We now have a GP that works with UCFS doctors. But the doctors don't know what to do with Tom. Nothing they try works. It feels like they don't listen to him anymore. With the side effects he complaines about, he has been told it is not his medication. He became very depressed. He took an overdose of his medication on June 6, 1996. After calling 911 and getting him to the hospital, his hart stopped during a seizure. They were able to get it going again. Then he went into status epilepticus. It took 20 minutes before they could stop the seizure. He was in a coma for 3 days. Now he is on anti-depressants. I feel that if the doctors had listened to him, he would have been on the new medication earlier and would not have taken the overdose. He takes classes at the college. This has helped his self-esteem. Which in turn has helped his epilepsy. Less stress and frustration he has the less seizures he has. I continue searching information and Tom follows what ever new instructions the doctors give him.
Barbara Nicola
South Lake Tahoe, CA USA - Content-type: text/plain Sat Feb 22 07:07:11 EST 1997

I have an 18 year old girl who acquired an ABI (closed head) from an automobile accident.Things are looking good for her. She has surpassed what the doctors thought was possible.She now wears a T-shirt that says:I put all my eggs into one basket and gave the basket to God. I am his MIRACLE.A miracle she is.My prayers and hopes are with all whom suffer from or are connected to an ABI or TBIinjured individual.Sandi
Sandi Porter <esporter@vianet.on.ca>
Sprucedale, Ont Canada - Content-type: text/plain Thu Feb 20 23:28:24 EST 1997

I am also a TBI survivor. I was a passenger in an auto that crashed into a bridge abuttment. I had many internal injuries as well as closed head and brain stem injury. It has been 19 months since that day and I am now on my own and slowly making a recovery. It is slow and many times disheartening but with perseverance I will make it. Never give up, as someone is always surprising the professionals.
Martha Makuch <martydm@flash.net>
Aledo, Tx USA - Content-type: text/plain Thu Feb 20 12:35:14 EST 1997

Our son suffered a TBI in an auto accident when he was 7. From an intial prognosis of no likelihood of survival to possibly a vegetative function, our son defied them all and graduatesfrom high school this year. Thanks are due of course to his Mom, many caring professionals and his own courage.A new set of problems have to be overcome following his graduation and we are sure yourweb site will help us all in meeting them. Thanks.
Stan Morrison <calpac@lynx.bc.ca>
Vancouver, BC Canada - Content-type: text/plain Wed Feb 19 00:46:37 EST 1997

My 87 year old aunt has had epilepsy most of her life. Even being raised in a doctor's family, she was always treated with a lot of prejudice because of her illness. She does not drive, and never had children because no one knew if it was hereditary or not. This is a great web page!
Nancy Viens <nviens@library.unt.edu>
Denton, TX USA - Content-type: text/plain Tue Feb 18 11:05:38 EST 1997

abi survivor from menengitis my beef is theres never much mention about desease related injurys i was wanting to set up a similar page no need now its been 7 years now im so glad to find this
mark norris
barrys bay, ont canada - Content-type: text/plain Mon Feb 17 21:55:05 EST 1997

Aloha!>I had the pleasure of seeing you at the TBI conference here in October, and meeting you and your husband at the general meeting of the Pacific Brain Injury Association in November. I have acquired a computer and gotten online, finally. Now I'm collecting material to complete my master's 'theses' paper (due in six weeks) so that I can graduate in May. I'm becoming a vocational rehab counselor. My paper is titled "Resources for People in Hawaii with TBI; What Is and What Could Be." With your experience here, any comments you have would be helpful and much appreciated. Lena Burian is working very hard to pass legislation that would fund a State 'TBI Committee'. Thanks for this great web site, and your hard work as a poet and advocate. You are helping many people.
Tony Hunstiger <Hunstiger@worldnet.att.net>
Honolulu, HI USA - Content-type: text/plain Mon Feb 17 15:16:07 EST 1997

I read broken dreams while looking for dream information. I don't know if Debbie Wilson will read this or not, but I'll wite this for her anyway. No, I haven't had a brain injury, but I know anyhow what it's like to have dreams broken. I know what it's like to ask for help and not get anything but silence and loniness, to be alone with no one uderstanding. But like you have done the only thing is to be patient and presistence. Don't forget that gift you have, hope, for as long as you have that nothing will seem as bad as it could be. Don't forget your dreams, maybe things can't go back to the way they were, but they can get better than before, even though it may not seems possible, either physically,or scientifically, but don't forget the gift.
anonymous
USA - Content-type: text/plain Sun Feb 16 22:30:32 EST 1997

Hello, I have been searching the internet for information on Traumatic Brain Injury. I am a Post Graduate Student at The Graduate School of America and working on a research paper. I am also a mental health worker and services children with severe emotional disorders. I am currently working with several children with TBI. Your information has been helpful for me education and professional needs. Thank You.
Trudy Tweedle <ttweedle@northernnet.com>
Grand Rapids, MN USA - Content-type: text/plain Sun Feb 16 15:57:45 EST 1997

I have very mild Epilepsy and I get very sick of having them I have 5 or 6 a day but I am having testing done at the moment please send me some mail back as I would love to get some informationThank you Narelle
Narelle Murphy <murphy @ois.com.au>
perth, Wa Australia - Content-type: text/plain Sat Feb 15 23:04:51 EST 1997

good site
Dean Eastbury <dj.eastbury@sympatico.ca>
Canada - Content-type: text/plain Fri Feb 14 15:17:56 EST 1997

Please misspelling of "conditions" in previous message. I don't always type that sloppily.
Ken Parker <pahkuh@acadia.net>
East Holden, ME USA - Content-type: text/plain Thu Feb 13 20:56:05 EST 1997

Nice to know that there are other people with similar codit-ions as mine that can appreciate what we've all been thru and can lean on each other so to speak.
Ken Parker <pahkuh@acadia.net>
East Holden, ME USA - Content-type: text/plain Thu Feb 13 20:53:08 EST 1997

I came upon your page while looking for after prom party ideas because tonight is an after prom party meeting at my house to discuss the prom party in may 1997. thank you for the poem. I hope you don't mind, I printed it so I could use it to show the other parents. It really hit home too because only two weeks ago a group of high school kids who had left a dance to go bowling, lost control of the car and hit another car head-on and killed a 46 year old husband and father of that car and also killed one of the high school students. I didn't know about it until I read about it the next morning, and I couldn't finish reading the article because I had seen the driver at a swim meet two days before. It really hit me. To close to home.
dick witulski <wituls19@rocky.orci.com>
denver, co USA - Content-type: text/plain Wed Feb 12 21:12:09 EST 1997

I found this page whle looking for info on tbi and coma. My daughter was in an accident on 013197 and has been in a coma since.I was disappointed at the lack of communication and with the staff at the hospital and I am trying to find out as much info as possible. Maybe i can be more help to her if I am more informed. There just isnt much out there re this conditon. My daughters name is Cori Rae. She is 18. She is my only child.I pray daily for GOD to bring her back to me.This page is the best idea I've seen yet. Thanks so much!
Pam Cory <cory@eosinc.com>
Springfield, Il USA - Content-type: text/plain Wed Feb 12 13:46:31 EST 1997

I was riding my bicycle home from the Buckhorn one night and woke up a week later with a tube hanging out my neck! The physical breaks were fixed in a few weeks. It took 5 months to even diagnose the TBI. But I'm dealing with it now. I am a slave to my DayTimer. Best of luck to all of you.
Skip Sailors <rsailors@wyoming.com>
Laramie, WY USA - Content-type: text/plain Tue Feb 11 17:29:37 EST 1997

I reached your page out of desparation! My wife was involved in a serious auto accident in September, 1995. By September, 1996 - after 26 years of marriage - we were separated!Since the accident I knew something other than the outward damage was wrong, yet our family doctor has continued to waive off inquiries about TBI as just "emotional" response to manyproblems.PLEASE email me with lay-level information, graphics and any other helpful information that I can use to encourage our doctor to follow-through with investigating TBI as a possiblesolution and seek help for my wife.Thank you for being here... dfp
Dennis F. Potten <dfpotten@agri-tours.com>
Champaign, IL USA - Content-type: text/plain Sun Feb 9 19:52:30 EST 1997

I reached your home page by chance while searching the netfor information about left temprol seizures. I am 49 yrsold and had my very first seizure in December. The EEG doneat the hospital showed activity on the left temple. The MRI was negative. Non-one can give me an answer of what has caused them after all these years. I have not hit my head and althoughI have a history of migraine headaches (receiving 10% disability fromVA)the last one was three years ago. I was placed on Lamitcal which after a couple of weeks made me an emotional mess,uncontrolable cryingfor hours, and a couple of days. I stopped taking it and contactedthe doctor who then placed me on Tegretol. This medication gave mea massive urine infection high blood presure, and again the uncontrollable crying. The doctor convinced that it was not the Tegretol gave me a anti-depressent which had tremendous detrimental effects. I was unable to drive home, controlmyself and the uncontrollable crying was worse. This was really bad because I work as a receptionist. I contacted my family doctor who gave me the medication to clear up the infection and placed me on 300 mg of Dilantin per day. This was in the middle of January. I took, on one occasion one tylonol PM at night to help with a headache. I believe this was a mistake because I had a seizure that night. Since stopping the tylonol Ihave not had any more seizures. A dilantin level test was done and found that the levels were 5.1 and apparently should be atleast 10. The dosage of Dilantin has been increased to 400 per day. I cannot help but wonder if there is something I ate or took that effected the levels. I am now in the process of searching books and the net to find out counter medicines should I steer clear of. All the books I have found tell me that I can take tylenol and medications containing acetaminophen are alright as long as I only take the recommended dosage. I have been taking one. If I take one at the same as Dilantin, does that effect the levels? I have a greatdeal of problem with nausea and have taken Malox, or a generic brandA pharmacist tells me that the Alluminum in the Malox is notgood. I have contacted a pharmacy page on the internet and am waiting for a reply. I do not have the funds, nor insuranceto ask for another EEG. As I have not hit my head or had anykind of brain injury, what caused the irregular EEG? I am anintelligent person whose life has been really disrupted. My doctor is not required to report my seizure to the motor vehicledepartment, but fear and conscience makes me not drive. Having torely on others is a blow to my life. I have an identical twinwho naturally asks what is the chance of this happening to her.If there is anyone out there who can help me I would be reallyhappy.I can be reached at Covert@radia1.comanother EEG
Judy Covert <Covert@radia1.com>
Acworth, GA USA - Content-type: text/plain Sun Feb 9 17:23:27 EST 1997

I am a little reluctant to post my thoughts here, simply outof respect to all of you. I am so impressed with your poemsDebbie, I wish you could put them all in a little book and make it available in bookstores across America. There are somany people who still don;t have access to the internet, andthey can benefit from your beautiful feelings. I am a HealthCare provider, and have only dealth with TBI patients in thefirst few minutes to hour of their trauma when I still workedas a Paramedic. I pray that I could become a part of thisfamily, the TBI group, so I can learn so much about your courage and love. I hope I have your permission. Thanks.
Hamid Kantara <DrHameed@flash.net>
League City (Houston), Tx USA - Content-type: text/plain Sun Feb 9 01:46:42 EST 1997

Enjoyed your site. Much useful Information.Be sure to visit ours and use us as a resource. We are members of the Ontario Brain Injury Association.
Mitchell Moshenberg <mitchm@interlog.com>
Toronto, ON Canada - Content-type: text/plain Sat Feb 8 12:11:41 EST 1997

My dad had a brain aneurysm and has recovered 90%. The family is now going through a depression stage as hispersonality has changed. He no longer has the will to doanything he used to love (for example, work).Thank-you for your effort with the information provided. If you have any further information that can help me, help my mom and dad I would be extremely grateful if you could forward it to me.Regards,Doug RoyCalgary, Alberta(403) 265-2277
Doug Roy <brids@cal.cybersurf.net>
Calgary, Alberta Canada - Content-type: text/plain Sat Feb 8 11:23:11 EST 1997

This page is great, and I found a lot of interesting information. Im associate professor in clinical neuropsychology, and I'm also father of a 17 years old, mentally retarded girl suffering from epilepsy. At the moment I'm working with disabled children, and I'm also supervising a research project on the epidemilogy of epilepsy in Western Norway. Best wishes from Norway!!
Knut Dalen <kdalen@online.no>
Bergen, Norway - Content-type: text/plain Thu Feb 6 16:59:57 EST 1997

I stumbled upon this site quite by accident as I was searching for any information about TBI and perhaps some comfort since my wife's anoxic brain injury 7 months ago. Debbie, you are truly courageous and your poetry is an inspiration and comfort to me. I will continue to revisit this site and share your words of inspiration with my wife Peggy, who now needs inspiration far beyond what I can provide her alone. Chris, you have done a great service by providing this site, and for that I thank you. I am now being forced to deal with emotions I never even knew I had, and knowing that there are others in similar situations is a comfort in itself. I know what you are going through, my friend. I have bookmarked your site, and will continue to visit it. Keep those poems coming, Debbie!
Terry Brennan <terry@nettech.com>
Raleigh, NC USA - Content-type: text/plain Thu Feb 6 15:10:45 EST 1997

this is great.
ANGELA BLAZELY
Sydney, NSW Australia - Content-type: text/plain Wed Feb 5 22:36:13 EST 1997

Your site is impressive. I complement you on your bravory,determination and what looks to be a better start than Imade in the beginning of my 13 yr experience as a TBIsurvivor. If I can be of any help I'd like that. I'm aneager Granddad to 2.5 yr old Jobie, and get to sit him oneday each week. I like that, too. If you want more info aboutmy experience with TBI, you can try: rcarl@hhs.net I'llbe glad to reply. If we need other things to talk about, myfamily is interesting, most of us Odd Balls, but interestinguntil you get to really know us.
Robert P Carl Jr <rcarl@hhs.net>
Fredericktown, Pa USA - Content-type: text/plain Sun Feb 2 01:21:14 EST 1997

I loved the page. Very moving poems.
Lorraine <overall1@airmail.net>
Dallas, Tx USA - Content-type: text/plain Sat Feb 1 21:34:37 EST 1997

I have a 4 year old godson who suffered a TBI a little over one year ago, we have always been very close and thankfully still are, he is improving at leaps and bounds and his prognosis is very good, still it has been a huge adjustment for him and all of us. Memories of the more difficult times can be haunting but it is nice have a place like this to turn to where people understand and can share similar stories and words of encourgement. Keep up the good work and thankyou.
Amy Boyle <aboyle@nmff.nwu.edu>
Chicago, IL USA - Content-type: text/plain Fri Jan 31 22:47:39 EST 1997

hi out there,just felt like saying thank you for putting together all this information.After I just moved from Europe to San Diego, I'm looking for a good doctor here and this page (haven't read ALL of it yet) probably can help me.
Peter Tiemann <75240.1173@compuserve.com>
San Diego, CA USA - Content-type: text/plain Fri Jan 31 11:56:48 EST 1997

-------**********TBI CAN BE OVERCOME**********------------- It took me 4 years to go from coma, to wheelchair, to quad cane via a MVA TBI. My short-term memory went from none at all to, now, as good as most. To all those new to the world of TBI (or not-so-new) it CAN get better. I improved my mental facilities by playing video games and remembering what I'd read in the TV Guide about the shows. TV may be chewing gum for the mind, but TBIs NEED some chewing gum to keep their brain active! E-Mail me if you need any help about anything.
Anne (Purple) Watters <Purple9999@webtv.net>
Springfield, MO USA - Content-type: text/plain Thu Jan 30 22:09:44 EST 1997

Hello!i am searching for the following coma - outcome - scale:Measure of behavioral responsiveness (MBR) Horn, 1993 ; Shiel, 1994)Thanks for your help, bye!
Katharina Schrank <k.schrank@xpoint.at>
Austria - Content-type: text/plain Sat Jan 25 13:47:30 EST 1997

ouaouou!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
elen <pantsi@hol.gr>
USA - Content-type: text/plain Fri Jan 24 12:05:35 EST 1997

I have survived 10 years with a malinant brain tumor. I also have periodic gran mal seizures. This has totaly changed my life. I can no longer work and I am now living at home with my mom and sister, who happens to be a nurse. This is a fantastic web site. Good luck to all those who responded.
L. Dennis Hodge <lhodge@neocomm.net>
Martinsville, Va USA - Content-type: text/plain Fri Jan 24 01:16:26 EST 1997

I am the mother of a 6-year-old girl, TBI survivor (hit by a car in May 1996). I would love to talk with anybody who has a TBI child about the same age. I love this web sight!
Gina Reid <reider@mvcc.com>
Nashville, MI USA - Content-type: text/plain Thu Jan 23 00:29:31 EST 1997

Thank you for this information. i was 15 and thrown offthe back of a moped. i fractured my skull, my brain began toswell and of course a concussion. i am 21 now, 6 & 1/2 yearslater i am about to graduate from college. I have enduredyears of therapy and angst battling with learning disabilitiesacquired from the injuries. i have lost my sense of smell, but not my sense of myself. i never felt like i fit in anywherewhen it came to group therapies because i am what they terma "walkie-talkie" it also took time for my frustration to whereoff when i was having problems because no one could see that was injured. this is a great forum for me to learn and to share. Thank you !! christina
Christina Bozarth <beanab@bu.edu>
Haddonfield, NJ USA - Content-type: text/plain Wed Jan 22 23:24:56 EST 1997

Lots of helpful information.
Tavia Carter <020701C@AXE.ACADIAU.CA>
Wolfville, NS Canada - Content-type: text/plain Wed Jan 22 20:46:24 EST 1997

Hello, my name is Terry. My life was turned upside down in 1982 when I suffered a ruptured AVM. The surgury that was performed on me (which saved my life} was done at the Univ. of Mich. No Hospital in the Toledo area would attempt the surgury and my sister found a doctor at UM that would attempt the process. As he put it I had no alternitive. I'll never forget that night before when he read the probable outcome, less that 50% chance of living an if I did I would probably not be able to see, talk, hear, walk. As it worked out I suffered none of those but I was left with a large scar in the lower left Pariatal portion of my brain. This scar has caused me to have uncontrable sesizures. The number of different durgs that I have taken in the attempt to place these sesizures under control is extremely long. I was placed in a number of different experemental drug studies.The most suscessful has been nourotin(I think I spelled it corectly). If anyone would care to talk to me about my experiences feel free to write me as I have went through just about everything that there seems to be avaiable.
Terry A. Johnson <tjohnso@pop3.utoledo.edu>
Perrysburg, oh USA - Content-type: text/plain Wed Jan 22 20:40:11 EST 1997

what a wonderful web site thank you needed to read this today going thru a difficult time right now God Bless All My Best to you@X@X@X@X@X@X@X@X@X@X@X@X@X@X@X@X annie
ann cullum <booandpoo@webtv.net>
east quogue, ny USA - Content-type: text/plain Wed Jan 22 12:48:02 EST 1997

I think this page is very special. it is good that people have a chance to share their own input. that prayer was very touching and made a lot of sence. i just came back from my neurologist, i have had epilepsy for 13 years (i am 18yrs old). i am 18 years of age and i am sick of this epilepsy. i have dealt with it for well over half of my life and i think it is time it stops. so i asked my doctor about the possibilities and options of Laser Seizure Surgery. she basically rejected my request and i was heart broken. i figure since the people at the hospitol can not help me, i must get help from my fellow sufferers of Epilepsy. i need as much support as the next person, thus i have constructed a web page devoted to Epilepsy (http://www.lebmofo.com/~raph). it has answers to questions and support resources. i just threw it together and it is still in the making but i believe that the easiest, and only, way to get through our condition of Epilepsy, is together. i am sorry that i am rambling on so i'll stop now. -Raph
Raph Zappala <RaPHy@lebmofo.com>
Philadelphia, PA USA - Content-type: text/plain Tue Jan 21 14:24:29 EST 1997

I think this page is very special. it is good that people have a chance to share their own input. that prayer was very touching and made a lot of sence. i just came back from my neurologist, i have had epilepsy for 13 years (i am 18yrs old). i am 18 years of age and i am sick of this epilepsy. i have dealt with it for well over half of my life and i think it is time it stops. so i asked my doctor about the possibilities and options of Laser Seizure Surgery. she basically rejected my request and i was heart broken. i figure since the people at the hospitol can not help me, i must get help from my fellow sufferers of Epilepsy. i need as much support as the next person, thus i have constructed a web page devoted to Epilepsy. it has answers to questions and support resources. i just threw it together and it is still in the making but i believe that the easiest, and only, way to get through our condition of Epilepsy, is together. i am sorry that i am rambling on so i'll stop now. -Raph
Raph Zappala <RaPHy@lebmofo.com>
Philadelphia, PA USA - Content-type: text/plain Tue Jan 21 14:23:10 EST 1997

Hello, this is a great page. My name is Ruth and I am 19 years old. I was 17 years old when I was involved in an accident on 10/1/94 when coming home with my brother and friends. I am a TBI survivor. It's been very hard for me. I lost the ability to speak, so my only way of communication is through writing. I truly know that the only reason that I am alive today is because by strong faith and belief in the Lord. I thank him daily for everything he has done for me, inspite of all that has happened to me. It has been over 2 years since my accident, and on Sunday I had 4 siezures and ended up in the hospital. I am on Dilantin 300mg daily. I am really scared. Can someone who has had a similar experience please e-mail me, and please tell what to expect or tell my about your experience. Thanks!! Love in Christ, Ruth
Ruth Piasecki <Rozokus@ix.netcom.com>
La Verne, Ca USA - Content-type: text/plain Sun Jan 19 01:01:26 EST 1997

I'm 16 and I recently had an EEG,(for the fourth time) and was told that this showewd abnormalwave activity. I had previously thought that I had partial-complex seizures, and am now told thatI have general seizure activity. They want to change my medication from Tegretolto Depakote. Is anyone on this? Does anyone know anything about it? Please let me know
Kelley Caldwell <viejoattheriver.com>
Tucson, AZ USA - Content-type: text/plain Sat Jan 18 19:05:16 EST 1997

I'm 16 and I recently had an EEG,(for the fourth time) and was told that this showewd abnormalwave activity. I had previously thought that I had partial-complex seizures, and am now told thatI have general seizure activity. They want to change my medication from Tegretolto Depakote. Is anyone on this? Does anyone know anything about it? Please let me know
Kelley Caldwell <viejoattheriver.com>
Tucson, AZazaAzz USA - Content-type: text/plain Sat Jan 18 19:04:03 EST 1997

i have a 19 year old sister with epilepsy and her behavior is starting to concern us. i want to try and help her and my family out.
ginny
USA - Content-type: text/plain Sat Jan 18 16:06:53 EST 1997

New CAP trainer very concerned about my new client and friend, a TBI victim. Will visit often.
DHS <tandem8@juno.com>
NC USA - Content-type: text/plain Sat Jan 18 15:57:12 EST 1997

Do you know of a site with the 'international classification of epilepsy'?
Kimberley Peter <k.peter@utoronto.ca>
Toronto, ON Canada - Content-type: text/plain Sat Jan 18 13:22:20 EST 1997

I'm am 14 years old I was in a car wreck in 1995 Easter night. A friend of mine and I were going out when we were leaving his house a girl came a cross the double yellow line and hit us head on. I now suffer from TBI, I hit my head on the windsheild and a couple of weeks after the wreck I had I guess what you would call a small seizure I was put on dilantin and then tegretol about 6 months before my 15th birthday I was taken off the medication so that I would be able to drive I still suffer from some of the sideaffects like short memory and short temper right now I'm 9th grade and doing pretty well. I know alot about TBI and trying to get my life straightened out and get this wreck behind me. This page is a really great thing for everyone to get to know more about their situation.
kim taylor
va USA - Content-type: text/plain Sat Jan 18 00:28:11 EST 1997

I am a 22 year old female and have had epilepsy since I was 10. I have been fortunate in that my grand mal seizures are very infrequent. Although, lately i have had several petit mal seizures. I never used to have a problem with being epileptic but now it seems to consume my life. i am so afraid that my small seizures are going to turn into larger ones. Anyone who has words of wisdom please email me I would love to hear some. The page is great and gave me some much needed confidence.
Alison Heffer <AliCats21@aol.com>
Manhattan, Ny USA - Content-type: text/plain Fri Jan 17 18:52:26 EST 1997

I think this page is terrific. I discovered that I have seizures when I was 16. This year was bad for me, since I just got my drivers license back, bought a car finally, then about two months later, I had two seizures in a row and ended up in the hospital. I am still trying to recover. I am trying to get onto a mailing list. I still feel down about my situation. Your site helped a bit. I saw that I am not the only one and that I am not alone.
Melanie Berkowitz <berkowit@pegasus.montclair.edu>
Teaneck, NJ USA - Content-type: text/plain Thu Jan 16 12:51:54 EST 1997

I am a student at Holderness School writing a research paper on Epilepsy, specifically, what it is and general information which may include stories, faq's, poems's, anecdotes, etc. If you could help me in any way I would really appriciate it. E-mail me at Noah_Sager@Holderness.org. Thank You.
Noah <Noah_Sager@Holderness.org>
Plymouth, NH USA - Content-type: text/plain Wed Jan 15 10:38:31 EST 1997

My son has had epilepsy since puberty (3 yrs). I came across your page doing research for a paper.
Warner Thelen
Suisun, CA USA - Content-type: text/plain Sat Jan 11 13:36:26 EST 1997

Andy, my soulmate, best friend, lover, and partner-for-life is the survivor of a TBI. His accident took place 3 years prior to our meeting, so I'm a new to the "world" of a TBI survivor and all associated with it. This is a wonderful site to find, not only informative, but inspiring, supportive, and encouraging as well. Please keep up the great work! I learn a little every day, and can't begin to express my admiration for the courage and determination of the disabled. I enjoy the exchange and sharing of information, and welcome any form of TBI enlightenment. You're truly remarkable, Andy, and I love you with all my heart!
Alicia M. Everest <ameverest@aol.com>
San Diego, CA USA - Content-type: text/plain Sat Jan 11 02:16:56 EST 1997

I am happy to have found this page and hope that I can provide a word of hope.I suffered (note the past tense) from epilepsy for 25 years. In July of 1995,I underwent temporal lobe surgery to control my seizures and have not had anyseizures since. I would like to share my experiences with anyone who is interested.Thank you for posting your prayer, I will print it and use it myself.If you are interested in poetry, please check out http://www.netangel.com
W. Paul Dammann (Paul) <Willy_Paul@msn.com>
Miami, FL USA - Content-type: text/plain Wed Jan 8 15:22:46 EST 1997

Thank You. I’ve had what the doctor’s refer to as a "seizure disorder" (basically I think that they don’t know what else to call it), since I was 19 years old. I am now 29, turning the big 30 this year. Most of the time I don’t think about it. Seizures come and seizures go. However, this has been a "bad" year for me, and I’ve have been wallowing about how my life is so affected by this illness. The big complaint has been that I can’t drive. Sometimes I think I am suffering from memory loss, but it not drastic, just annoying. The guest list alone has had me reflect how well I have had it. I’ve rarely feel discriminated, and haven’t lost any friends. Relatively I’ve been lucky. I don’t know any one else that suffers from this illness, not that I want anyone to have this illness but it was so comforting for me to read that others have had some similar experiences. Suddenly, I felt connected, not so alone. Thank you again. Sue
Sue
USA - Content-type: text/plain Tue Jan 7 18:09:17 EST 1997

Hello,I am a pediatric home health nurse. My primary patient is a four year old child who choked on a grape last year. He suffered global brain damage. His mother would like to speak to parents in simalar situations to discuss effective tx.The most recent improvement in his condition is the result of surgical implantation of an Intrathecal Baclofen Pump. Please feel free to write me: Kimberly Rivera 726 St. Lucy Dr. Corpus Christi, Tx. 78418 Thanks for your attention to this posting:) KR U.S.A.
Kimberly Rivera <Rainboboa@AOL>
Corpus Christi, Tx USA - Content-type: text/plain Mon Jan 6 04:25:36 EST 1997

I've had epilepsy since I was seven, and I never felt at home anywhere like I do on your site...Thank you.
Tom Meyers <themarket@worldnet.att.net>
Albany, NY USA - Content-type: text/plain Sun Jan 5 23:22:39 EST 1997

Hi, love your pages. I'm mom to a 13 yo girl with tbi and pdd,and everything that goes with it. She's great and is basically a happy kid. Life is sometimes wild and wonderful, and some wildand strange, but it's always an adventure. She is cognitively capablebut due to the tbi her short-term memory,attention, and impulsesare much like someone with alzhiemer's. Christmas is always greatsince she always remembers Santa (doesn't last long enough for her to'remember' who Santa is). Her long-term memory is excellent soshe tends to remember things as they where whenever she last sawthem. Life is grand...
leslie wilson <lawilson@sprynet.com>
TX USA - Content-type: text/plain Sun Jan 5 20:22:40 EST 1997

Good work !
Keith Pike <kappy@nfld.com>
MT> PEARL, NF canada - Content-type: text/plain Tue Dec 31 20:53:21 EST 1996

Came accross your page whilst looking for links for our updated home page. Will add you to our new page in the next couple of days. Great site for ABI etc.
Gary Roberts <kirinari@dragnet.com.au>
Wodonga, VI Australia - Content-type: text/plain Tue Dec 31 16:54:58 EST 1996

Oops!! Did it again!
Peggy Mejia <Peggy Mejia@prodigy.com>
USA - Content-type: text/plain Mon Dec 23 20:24:01 EST 1996

I would like to wish Season's Greetings to all of you good folk. You all sound like "tough cookies", and if any of you want to join the Tough Cookie Club, let me know. I had a brain tumor(non-malignant)removed in 1989, and began having petit mal seizures in 1965. Every doctor I've seen says the surgery caused the epilepsy, and that this occurs about 90% of the time with brain surgery. For real? Any similar experiences out there? But I'm alive and ticking, even if my timing is a bit off. God's blessing and love be upon us all, especially at this time of year. Sincerely, Peggy Mejia.
Peggy Mejia
Riverside, CA USA - Content-type: text/plain Mon Dec 23 20:21:04 EST 1996

As a graduate student of Speech Language Pathology, I found this web site to be of great help! I wish to work with TBI patients in a transitional care setting! Keep up the good work, people like myself really appreciate things like this!
Lara <Shoop1@aol.com>
Anaheim, CA USA - Content-type: text/plain Wed Dec 18 21:39:06 EST 1996

As a graduate student odf Speech Language Pathology, I found this web site to be of great help! I wish to work with TBI patients, in a transitional care setting! Keep up the good work, people like me really appreciate things like this!
Lara <Shoop1@aol.com>
Anaheim, CA USA - Content-type: text/plain Wed Dec 18 21:35:04 EST 1996

Really good site, i hope our members in New Zealand canlink up and find all the good things i foundPlease add the above link to Head Injury Society New ZealandKeep up the great work for all TBI sake, Please !!
Rene Turner <renet@wave.co.nz>
Hamilton, New Zealand - Content-type: text/plain Mon Dec 16 08:08:48 EST 1996

I'm mother of 21 yr old son, 4 yrs post tbi--lurk on John Lyons caregivers list, and lurked on Sprt List for a few months. Had to give that one up due to time, but saw your name here and just wanted to send a note with my best wishes and support. Your thoughts were always so helpful to me, and so right on! Thanks for being there!
Jan Sutherlin <grammaj@mbay.net>
Marina, CA USA - Content-type: text/plain Fri Dec 13 22:16:24 EST 1996

Thanks for the resource! We're currently involved in the ketogenic diet in establishing, fine-tuning, and etc the program here in British Columbia. Any suggestions are welcome! (4 year old Kimberly with Lennox-Gastaut is doing very well on it.)
Richard Merchant <rmerchan@sfu.ca>
Burnaby, BC Canada - Content-type: text/plain Fri Dec 13 14:48:02 EST 1996

I am with the University of Texas School of Public Health and am currently involved in an EFA sponsored research project to determine the direct costs attributable to epilepsy in the US. I have often found your site a valuable resource for information. Thank you.
Tom Reynolds <reynolds@utsph.sph.uth.tmc.edu>
Houston, TX USA - Content-type: text/plain Thu Dec 12 17:56:15 EST 1996

Thank you for this site. My 14 year old daughter has partialcomplex seizures. She had viral encephalitis at age 10 andwas in a coma for 4 weeks but recovered except for these seiz-ures which can't be controlled by any drugs we've tried. Andwe've sure tried numerous ones. Along with the seizures, my daughter has suffered friendships. After her rehabilitationand after coming home from the hospital, one by one, oldfriends began rejecting her. She went from being an A stu-dent to struggling to be low-average. Has anyone out thereexperienced the frustrations of rejection because of theirepilepsy at this age? Sure need answers. It's been almost 4years now.
Brenda Thompson <bthompso@riroe.k12.il.us>
IL USA - Content-type: text/plain Thu Dec 12 14:51:53 EST 1996

Haven't had much time to read EVERYTHING, but what I did read from others fortunate enough to find this web site is a litany of the miracles God has performed in each of our lives. I sustained a TBI on Sept. 23, 1996, (or so they tell me). It seems that I was out cycling when I got hit from behind by a delivery truck. After four days in a coma, I found myself in a fog that lasted for months. But in that state of un-reality, I found the peace that only God can give. Out of that experience God has opened many doors of opportunity both in the community, with a local brain-injury support group, and at church, with a special class for people with mental disabilities. And so I praise God for my injury, and the subsequent recovery that has occurred. I praise God for all of you who have fulfilled His call on our lives, to live selflessly and to comfort those who need comfort.
Scott LaPoint <brain@softdisk.com>
Shreveport, LA USA - Content-type: text/plain Wed Dec 11 17:37:57 EST 1996

I am a nursing student working on a pathophysiology project about lifestyle issues associated with epilepsy. Thank you for this page. It has helped me tremendously!
Alicia Luczaj
Columbia, MO USA - Content-type: text/plain Sat Dec 7 14:58:43 EST 1996

This has been a great pleasure for me. I am also a surviver of TBI. God only knows that it is hard. I am still gettingtreatment. I have been a "surviver" for five and a half years.I'm still fighting. I will not give up! Thank you so much for having this web page. I am not alone any more.
Tanya O'Hearn <tanyabean@hotmail.com>
Brooklyn, NY USA - Content-type: text/plain Sat Dec 7 04:33:40 EST 1996

keep up the web site. it's pretty cool
patrick moyer
ca, USA - Content-type: text/plain Fri Dec 6 13:39:01 EST 1996

keep it going
patrick moyer
ca, USA - Content-type: text/plain Fri Dec 6 13:37:21 EST 1996

Thanks for all the help. Your home page is wonderful. Keep up the good work!
Becky Garlock
USA - Content-type: text/plain Fri Dec 6 13:16:00 EST 1996

I have a cousin who has serious epilepsy and I wanted to know more about what she had. It was great to read stories and poems written by people who have the same problem. It was a real insight to know what is like for real people. THANKS!
Alicia King
west jordan, UT USA - Content-type: text/plain Wed Dec 4 21:39:28 EST 1996

Dear Debbie,Thank you for putting me on your mail list which iam receiving ok. What a wonderful site you have here.Thank you for making T B I patients feel like theyhave another home. I have Epilepsy and have justhad surgery for it. At the moment i feel the surgeryis worst then the Epilepsy. But i am alive and thatis the main thing.Bye Bye for now.NIGEL RAINS, WESTERN AUSTRALIA.
Nigel Rains <nigelr@networx.net.au>
Perth, Australia - Content-type: text/plain Wed Dec 4 21:27:56 EST 1996

I am a clinical social worker working in a community mental health system. A current goal is to develop services and funding appropriate to individuals who have survived traumatic brain injuries and who have other diagnoses as well. The current system of services which are aimed at either individuals with mental illness or developmental disablilties is inadequate at best to assist survivors of traumatic brain injuries.
Michael T. Walker <grendel@net-link.net>
Kalamazoo, MI USA - Content-type: text/plain Wed Dec 4 12:43:41 EST 1996

Very nice resource for TBI - good job
Daniel Gobin <dgobin@unilaw.com>
Colubmus, IN USA - Content-type: text/plain Tue Dec 3 18:29:44 EST 1996

I am astounded at your page, it's depth, and it's breadth. There has been a lot of very hard work gone into this, and I appreciate it totally.

I also browsed through Debbie's poems, and tears came into my eyes as I read her tribute to Cody. A tribute indeed, saying what it is not possible to put into words.

Now that I have met all of you, and you are real, living people to me, the extent of this upgrade seems fantastic; there is no end to the resources available. I give you my deepest and most heartfelt congratulations and thanks from the whole community.

Dickibus
Dickibus <dickibus@vossnet.co.uk>
Ashford, Middx UK - Content-type: text/plain Mon Dec 2 17:25:54 EST 1996

Great page!!..My wife's brother suffered a TBI in a workplace accidenton October 21, 1996. Did not have a good diagnosis for any recovery yet the day before Thanksgiving he "came out" of the coma and seems to understand all that we are saying; recognizes people and can read names on a chalkboard and know who we are writing about. Needless to say, the entire family and all his friends are thrilled. I would surely appreciate hearing from anyone that has suffered or has been involved as friend or family of other people that have gone through this process. Even though each injury is different, there must be some common threads that you could educate me on..such as what to expect and is this "better" or "worse" than what you have seen.Thanks for the great page and I look forward to hearing from all of you!..Pat
Pat McCormick <mcc19@ally.ios.com>
Minneapolis, Minnesota USA - Content-type: text/plain Sat Nov 30 10:15:31 EST 1996

It's great that you are giving people a voice on the web.
Brian Poirier
USA - Content-type: text/plain Fri Nov 29 01:33:28 EST 1996

I am a mother of a beautiful baby girl who suffers from a rare disease called Sturge Weber Syndrome. One of the manyfacets of this disease is severe seizures (from petit to Gran Mal). At only 10 months of age, she has already been hospitalized twice due to these seizures. I am forever in search of additionalsupport and information regarding Epilepsy and have found a goldmine here. I have bookmarked your page and plan on returningoften. Thank you for your dedication and devotion to helpingothers who must deal with Epilepsy in their lives.
Julia W. Yarbrough <huntjul@centex.net>
Evant, TX USA - Content-type: text/plain Thu Nov 28 05:58:08 EST 1996

I am impressed by your page and links, which have proved to be very useful in my research project at University
Clara Glanville <julian@interalpha.co.uk>
United Kingdom - Content-type: text/plain Tue Nov 26 16:45:24 EST 1996

I have had seizures for some of my life. While I had seizures I was on Tegretol. Then tegretol gave me side effects. So then they took me off it and put me on depakote. Since I have been on depakote I have been seizure free for 3 yrs. now. Just recently though I have been clastraphobic,dizzy,and shakky. Sometimes I even hallucinate things. The doctors have run an EEG,MRI,and have tried reducing my medicine. Nothing seems to work, and the test turn out negative. On thanksgiving they are going to slowly take me off the depakote,and I will only take one pill a day till the doctor says so. Then I will no longer take it. Maybe some day they can find a cure. Thanks for this page hearing about other people's epilepsy helps me not to be scared as much as I was....
Shelley Martin
midland, tx USA - Content-type: text/plain Tue Nov 26 11:38:08 EST 1996

This "Guestbook" of yours is the best thing I've seen on theInternet since getting it last week! This is what I've wantedto see. I get to hear what fellow epileptics have been through. I had brain surgery 8/93 and have been seizure freesince. I would like to hear from other people who have hadsurgery for epilepsy and I would be glad to hear from peoplewho are thinking about it and would like a little informationfrom somebody who has been through it. I'd also like to hearfrom any others.
Cory R. Flynn <cflynn@dpla.net>
Watertown, SD USA - Content-type: text/plain Mon Nov 25 22:35:24 EST 1996

I love this page! It gives out so much information! I used to play in a band, I love the midi.file in here to listen toowhile on your homepage! I have had Epilepsy since I was 15 years old.. I am now 31/M I take: Tegretol, Dilantin & Phenobarbital.. I have complex partial & generalized seizures... I really love this sight! Please Keep up the good Work!Please! Anyone with same problem, please write to me.. I need to get information & visit with all possible.. It helps alot!your friend,Randy/Chetco
Randy/Chetco <rservice@ix.netcom.com>
Vancouver, Wa USA - Content-type: text/plain Mon Nov 25 11:14:38 EST 1996

What an amazing site! I'm very impressed. My older sister has a brain injury as the result of a fall eight years ago. That was my "wake up call" regarding brain injury. For the past five and a half years I've been working for the Head Injury Association of Toronto. I can't believe how much there is to learn. Thank you for doing such a great job setting up this site. It's fantastic. I'll visit again soon!
Ruth Crawford
Toronto, ON CANADA - Content-type: text/plain Sun Nov 17 00:22:36 EST 1996

thanks for being on the net. I am striving everyday to understand my epilepsy.
richard brainard <rick@uit.net>
kansas city, ks USA - Content-type: text/plain Thu Nov 14 11:52:34 EST 1996

Fantastic Page. Lots of useful information. It's great to know it's there for families withepilepsy and others who want to help.
Juli Kainz <jkainz@unm.edu>
Albuquerque, NM USA - Content-type: text/plain Thu Nov 14 11:42:39 EST 1996

Thank you for organizing this very comprehensive list ofresources to learn about epilepsy. My son is almost threeyears old and has been on the ketogenic diet for one year.We have a lot to learn yet and your work helps very much.
Brian Bennett <brianb@xyz.net>
Homer, AK USA - Content-type: text/plain Thu Nov 14 05:10:15 EST 1996

This is a very inspirational page . I have enjoyed visiting this site . Keep up the good work .
Stacie Caudill <Skyway@harold.eastsky.com>
Jenkins, Ky USA - Content-type: text/plain Tue Nov 12 23:37:25 EST 1996

Thanks so much for this page! An old friend of mine has epilepsy and it is so comforting to know that there are others out there with her to help her get through her days. I jjust recently got back in touch with her and thought it would be nice to find out a bit more about what the condition is. The poems were great, I myself am a poet. I am going to share a few with our school's SAAD group. Thanks a bunch!
Suzannah <suzy_v_worl@halcyon.com>
Bellevue, WA USA - Content-type: text/plain Tue Nov 12 23:36:52 EST 1996

Was out surfing & stumbled across your page-FABULOUS!!!I started having seizures at 9 yrs of age-now at 32have been seizure free for 4 consecutive years!!!Your pageis a great forum for the support we all need. Keep up theGREAT WORK!!!! Would appreciate more on temporal lobe epilepsythough-THANKS AGAIN!!!
Margaret Morgan <errmojun@vir.com>
Lasalle, PQ Canada - Content-type: text/plain Tue Nov 12 20:53:11 EST 1996

I help take care of my 8 year old niece who had a major brain bleed at birth and has since struggled with the associated problems of noisy brain, seizures, ADHD, and specific areas of the brain that no longer work. She has been through just about every problem and treatment that you can imagine. However, we all keep on going forward.
Kathy Kasza
USA - Content-type: text/plain Tue Nov 12 20:49:25 EST 1996

I am a seventeen year old who began having grand mal seziuresat age eight after I fell down 6 wooden stairs head first. I am now free of seziures and have been for a year and a halfthanks to the medication Neurontin. Your page has been great in keeping my spirits up, and me sezuire free.Thanks, Emily
Emily Hackett <hackett1@juno.com>
Cincinnati, OH USA - Content-type: text/plain Tue Nov 12 14:06:45 EST 1996

I have been through the EMU at Hermann hospital with Dr. Wilmore and Weeles. I have been diagnosed with Pseudoepilepsy. I have been in counseling for 3 1/2 - 4 years for depression. I have had several accidents (car and otherwise.) I am looking for anyone with info as to hypnosis and the success rate as well as a friend that has been through this. As you all know Psuedoseizures come as a let down and an uplift at the same time. The solution you expected to receive is gone and a new problem arises. I am greatful yet discouraged. I am willing to try anything to get back to work. I have 2 small children 11-girl 7-boy and want to take control of my life back and enjoy the future. I know this is possible and will never give up hope. How does the world around us deal with these? I think better if we are more open. Maybe we should all go on Geraldo or something?:)beats watching what they have on now!!!send back if I can help in your testing or you have ideas
Beth Moore <bwhiz@worldnet.att.net>
Houston,, TX USA - Content-type: text/plain Tue Nov 12 08:32:07 EST 1996

My son was hit by a car in March of 96 and suffered tbi and mashed the left side of his face. He's 13 and now has to learn certain things over again.He can walk and talk,but he can't write what he's thinking.I was glad to find this TBI page so I could find out more on the subject. Thanks.
MARY <MADZ68A>
PALMYRA, VVA USA - Content-type: text/plain Mon Nov 11 15:16:39 EST 1996

Hi. i'm new to the internet and decided to look up anything i could find on epilepsy since i have been diagnosed as such for 5 years. i just wanted to tell you i LOVE your site. i should say that my first known seizure was 5 yrs ago, the drs think i have been epileptic since my teens just didn't know it.i started out with severe headaches in aug of 91 then had the seizure in nov. eversince then my family treats me different and i have had a hard time keeping a job even though i have yet to have a seizure during work (my seizures are almost always nocturnal (which doesn't help in trying to figure out what type they are).i plan to bookmark this and come back to it whenever i can since i found so much information on it and the personal stories are so helpful to, i thought i was the only one going through some of this stuff. thanks for listening and please email me with any comments.
Carol Tappan
USA - Content-type: text/plain Mon Nov 11 10:43:02 EST 1996

I am 18 years old and have had seizures since I was about 7 years old. I have just began to realize how many people have the same problem I do, and I was comforted by the feeling that I am not the only one. Thank you for helping me realize that I should not be ashamed of my seizures.
Brett Beasley <quadb@hotmail.com>
Roswell, NM USA - Content-type: text/plain Sun Nov 10 15:47:50 EST 1996

Hmmm this page is cool...well the teddy bears on the top are not my kinda things but it's cool I am Alan dude from italy am 20 years old and damn i had my1st grand mal seizure when i was 18!!!(kinda strange....)Fortunately i had only 2 seizures so far and i have beenfree for almost 2 years.Anyways i'm still under kinda medicine called DEPAMAG(that's good) but it does not give me problems stress or stuff like thatWhat really sicks me is that i used to stay up till late at nightbefore going out with friends to concerts and so on and now i can no more for a don't know how long period of time...anyways i am stillgoing to see the Dog eat Dog...lives goes on u know!!!:)being epileptic i reached out that i'm still a luky guythere are so many worse things...so driving a car doing bunjee jumping or extreme sports are only bullocksSO C'MON BE HAPPYLEPTIC!!!! :)))
Alan Brivio <Brivio@bbs.infosquare.it>
MILANO, ITALY - Content-type: text/plain Sun Nov 10 09:24:49 EST 1996

Fisrtly I thought that this site was truly incredible and Ihope it will continue for a long time to come.Secondly If anyone wants to chat please email me.
Lachlan Cavanagh <loclainn@nrg.com.au>
Casino, NSW Australia - Content-type: text/plain Sat Nov 9 06:27:50 EST 1996

I'M LOOKING FOR SOME THANKSGIVING POEMS TO USE IN THE PROGRAM BEFORE THANKSGIVING
TERI LEA BARTEE <BWOOLSEY@ACSNET.COM>
CHATSWORTH, IA USA - Content-type: text/plain Fri Nov 8 22:43:55 EST 1996

My son has anoxia brain injury and just started having sometype of seizure or something starting the 1st of October.Ryan was injured in Aug of 92.
Elaine K. Miller <emiller@neon.nlc.state.ne.us>
Lincoln, NE USA - Content-type: text/plain Fri Nov 8 13:13:19 EST 1996

I'm a(n epileptic) graduate student in English literature, and am considering doing a thesis on fictional accounts of epilepsy and/or epileptic authors. If anyone knows of any English-speaking authors who are epileptic, or of any texts in which epilepsy is presented, I'd truly appreciate the information.
Melissa Herb <mherb@lamar.colostate.edu>
Ft. Collins, CO USA - Content-type: text/plain Fri Nov 8 02:52:06 EST 1996

Hello everyone. I'm Pam and have been experiencing "spacey" seizures since I was 16 (that was 13 years ago--wow, I'm getting old). Anyway, I've been diagnosed with partial complex seizures and am interested in talking with others who experience the same bizarre, indescribable states of mind that such seizures bring on.
Pam Zich <zichr@erols.com>
Stafford, VA USA - Content-type: text/plain Thu Nov 7 20:34:02 EST 1996

I'm 24 and I'm a 1 1/2 year TBI survivor. I was very lucky that I never had a seizure OR fell into a coma. When I was in a hospital-induced coma during surgery to remove the blood clot in my brain, Dr. Murrle told my parents that he wouldn't expect me walk or talk again! Well, I'm going back to school after a year and a half of recovery. I only have 12 credit hrs. to finish my B.S. in Electronic Engineering Technology. Of course I'm nervous! I've got right side weakness, and my right hand is capable of doing almost nothing! But oh well, that's life... Check out my homepage, too...
Andrew Kariger <kariger@interaccess.com>
Chicago, IL USA - Content-type: text/plain Mon Nov 4 20:37:54 EST 1996

I am 16 and I was diagnosed with partial seizures when I was 12. I am always looking for people to talk to who have been through similar situations as me.
Janelle Rivera <J Curly>
Palm Bay, FL USA - Content-type: text/plain Mon Nov 4 16:58:57 EST 1996

I am 16 and I was diagnosed with partial seizures when I was 12. I am always looking for people to talk to who have been through similar situations as me. I enjoyed reading the poetry in the this area.
Janelle Rivera <J Curly>
Palm Bay, FL USA - Content-type: text/plain Mon Nov 4 16:57:57 EST 1996

i am a biology major at carthage college, and i am doing aterm paper on epilespy for my biology class. i was surfacingthe net, i a found your web page. i found this page to veryintersting and useful in my term paper. in addition to that,i have epilepsy my self.
ruyayeem rashid <rashid1@carthage.edu>
kenosha, wi USA - Content-type: text/plain Mon Nov 4 13:51:28 EST 1996

I forgot to leave my e-mail address. I would appreciate if some would with TBI would like to correspond.Jason
Jason Schwartz <AAMCJS@worldnet,att.net>
Annapolis, MD USA - Content-type: text/plain Mon Nov 4 10:42:51 EST 1996

I suffered a Traumatic Brain Injury on 12/24/95. I wasin 2 different hospitals, then in outpatient rehabilitationfor 6 months. Then I was in another hospital this pastAugust. It is very discouraging to have TBI, because sometimesI feel like no one understands (now that I'm back in the "real"world), but I'm glad that I found this site...
Jason Schwartz
USA - Content-type: text/plain Mon Nov 4 10:38:59 EST 1996

Would like to hear about reserach on nutritional aspects of treating epilesy. thanks
Sybil Montgomery <sybmont@aol.com>
Penn Valley, PA USA - Content-type: text/plain Sat Nov 2 10:24:31 EST 1996

Thank you! I suffer from complex-partials as a result of a toxic encephalopathy. I also have nonelectrical seizures which I wish I could know more about and control. Please correspond with me if you have same. I worry about never sorting out which is which and getting overmedicated. Good Luck to everyone out there.
Kara Reed <karareed@acsu.buffalo.edu>
Buffalo, NY USA - Content-type: text/plain Fri Nov 1 12:47:58 EST 1996

My 28 year old finace has experienced epileptic seizures since he was 13. They subsided around 18 and have returned in the past 3 years. The doctors don't know the cause of the seizures...but have put him back on Tegretol which he was taking as a teen. I think it is because his father and grandfather used to severely beat him as a child. On more than one occassion he was beaten in the head with a broom stick. It makes me sick that they could've caused his epilepsy. I myself have experienced "fainting spells" and strange moments in which I am conscience but spaced out. A doctor diagnosed me as having syncopal episodes which accompany severe physical or mental shock. I'm just glad that there is a place here on the Net where we can both find solace and information.
Lori Decter <LMDecter@aol.com>
Newark, CCA USA - Content-type: text/plain Fri Nov 1 01:58:11 EST 1996

Am a TBI survivor. Have found the support group very helpfuland informative in relation to what I wasn't told by the Dr.
Darlene Harwell <dharw@iswt.com>
Mansfield, TN USA - Content-type: text/plain Thu Oct 31 14:32:28 EST 1996

Excellent page. Attorney specializing in TBI cases, working hard to put together a page which can add to the excellent contribution you have done here. Also