"People don't care how much you know, until they know how much you care".
And welcome to the first ever issue of the newsletter for the National Rehabilitation Centre for the Paralysed. Particularly in the area of personal rehabilitation, the saying "People don't care how much you know, until they know how much you care", rings true. To find out about the people and to discover the latest breakthroughs, this newsletter includes an interview with NRCP's founder and chief executive, David Heard M.A. (Ex.Therapy).
Please use the Contents list coming up to choose an article of interest to you. As part of our 'Spread the Word' Campaign, please s forward the url to everyone whom it may help, so that they may do the same and thus keep the ball rolling. Thank you.
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We've recently launched a new, free service
through our website. Through an on-line form,
anyone (yourself included, of course) may request
a free video and brochure about exercise therapy
and the Centre. Please recommend this to anyone
with Spinal Cord Injury, Stroke, MS, Spina Bifida,
brain damage, cerebral palsy, or similar.
Click 'Information Request Form' from the menu.
1. SEASONAL OFFERS - Get your new NRCP Tariffs 2001/2002 in your inbox within minutes or your postbox by the morning and take advantage of the new seasonal variations which may SAVE YOU UP TO 50% off the price of your course. Inbox (1)
OFFERS PLUS - Find out about various funding
suggestions, including the NRCP's new Bursary!
GOLD REWARDS - We recognise that many of
our clients are superb ambassadors for the Centre
- and we'd like to reward that!
2. YOU COULDN'T DO THAT BEFORE - Roger Whittle's amazing story from all-round success, to spinal cord injury at C5 and C6, through to regaining "complete independence", and most recently, his wedding.
3. PURPOSE - Interview with Mr. David Heard, founder and chief executive of the NRCP.
4. SUCCESS STORIES - Similar to the progress made by Roger in the article below, whatever the gains you've made, return to employment, or similar, be it as a result of exercise therapy at the NRCP, or by other factors, help us to share your message and give hope and encouragement to others.
5. MULTIPLE SCLEROSIS - "A 56 year old lady, whose first indication was a random, mild loss of balance..."
6. STROKE - Not all people who suffer a sroke are middle-aged or more. The condition can also affect the young.
7. MEET THE TEAM - As a regular feature, we'll be introducing you to members of the NRCP team. For this issue, meet our Head of Training and Development, Jodi Mountjoy.
POSTERS - By popular demand, we now have A4 sized posters available detailing exercise therapy and the NRCP. Call Anne on 01453 887 390 (from within the UK, or +44 1493 887 390 from abroad), or email email@example.com to request a poster for your Centre, and a leaflet of your own to us for our information area. Thank you.
OUR BEST WISHES TO VANESSA - Vanessa is hanging up her typing gloves and hoping to move into the world of e-commerce and other web-bery.
Ness has been with NRCP for more years than either of us care to remember, and I am sure that she will be sorely missed by all the staff, and indeed the clients. It's a brave change of direction and I am sure like me you will wish her every success.
1. SEASONAL OFFERS, FUNDING SUGGESTIONS AND GOLD REWARDS - NRCP Tariffs Sheet 2001/2002
We are pleased to advise our new flexible pricing structure. This has been designed to assist all clients coming to the Centre, whether for the first time, or indeed for the fifteenth.
For first-time clients there is now a stepped pricing structure that not only recognises seasonal variations, but allows for some off-peak discounting. We believe that this makes the Centre more affordable and more available to a wider range of people.
We recognise that for some people even these prices may beyond their means. So for those first-time clients who are particularly hard-pressed financially there are some alternative funding offers and suggestions, including our own Bursary Scheme - see the new tariffs sheet for details.
Moreover we know that many clients are superb ambassadors for the Centre, spreading the word and encouraging other people to visit and hopefully participate in our unique programmes. These efforts should also be recognised and rewarded.
We have therefore provided a scheme for fee credits for new business introduced.
Whatever you situation, please discuss your funding needs with us in complete confidence. We are here to help.
To get your copy of the new NRCP Tarrifs 2001/02, email firstname.lastname@example.org putting 'Tariff Request' in the Subject: header. Or call Anne at the Centre on 01453 887 390.
2. YOU COULDNíT DO THAT BEFORE - Roger Whittle's inspirational story.
(The following article was also published in August's edition of FORWARD, the magazine for the Spinal Injuries Association)
October 1996 was idyllic except for that one dive. Roger Whittle was on holiday with a bunch of good friends. They were young, single, fit; physically and financially. All successful businessmen, they spared no expense on their wild weeks away and this time had chartered a yacht to cruise the crystal waters of the Caribbean.
LIFE was good. In fact more than good, it was, in Rogerís words, "bloody brilliant".
Moored out in the bay he decided to go for a swim. The water was crystal clear. So clear that the sandy bottom seemed to come right up to the hull of the boat. He dived in and that sand bar was deceptively just below the surface. He broke his neck at C5 and C6 and in that instant his life inexorably changed.
"Immediately I had my accident I couldnít move anything. No leg movement. No arm movement. Nothing would move."
The local A&E diagnosed spinal cord injury. So 24 hours, and a helicopter ride later, Roger was in the Spinal Centre, at the Jackson Memorial Hospital in Miami. He was there for four weeks where the diagnosis was confirmed as a C5/6 incomplete lesion.
Then he came back to Stoke Mandeville, in the UK, only to spend 18 weeks in bed with a pressure sore. It was perhaps his most depressing time. "I could not do anything, literally. Couldnít hold anything, couldnít lift anything. So for the first five months I was fed, washed, dressed, everything."
Roger recalls, "Once I got out of bed I needed pushing around, because I couldnít even feed myself, I had to be fed like a baby."
It was at this point that Rogerís bloody-mindedness kicked-in and he started to take control. "They wanted me to use feeding straps in my hand, so I could put a spoon in, but as I said to them, "thereís no way Iím using a feeding strap, I want to be able to do it myself." I tried to pick up a spoon. I didnít have any grip, so I tried to shove it between my fingers and just try to scoop food up."
With this primitive method Roger would attempt to feed himself and freely admits that most of the food went on him rather than in him. But there were some successes. "After days of trying I managed about two or three mouthfuls, and the spoon would drop and that was it. I was knackered."
Again his tenacity and self-belief carried him through. "I just tried to make as much effort as I could to do whatever I could for myself. And after a while I started to get better at these things".
Whatever his progress the fact is that Roger was totally dependent on carers, and freely admits that he needed help to put things into his hands and assistance in lifting the arm to his mouth. Also they spent a lot of time and patience picking things up from the floor.
But he never wavered in his belief.
"It really was, and still is, a question of trying my hardest to do things by myself. I got to the stage where I could just about move the wheelchair. I was told I needed an electric wheelchair. But I wouldnít have one, because I knew that if I did I wouldnít improve.
"So it was then a question of trying to push the wheelchair. To start with, you use the palms of your hands to push it, and after a while I started to get a grip back in my right hand, but it was basically a pinch grip. Using the thumb and the forefinger.
"I went on to the rehab ward, and told the nurses there that I wanted to be able to dress myself. I couldnít even put a sock on, and the first few times I tried it took almost an hour to put on a single sock. And I was so tired that I was finished for the rest of the day.
"The nurses on St. Josephís Ward were brilliant. They really helped me, even though it took a long time. With their help and perseverance I started to be able to dress and undress myself."
He evolved his own approach and technique for dealing with the everyday things that we all take so much for granted. "You try to work with what youíve got. If you havenít got the grip to hold something, then you canít do it the way you used to. So if that means hooking your finger around a sock to pull it on, then thatís what you have to do. You use whatever means possible to do things. I quite often use my teeth to do certain things, like opening a packet, because thereís no other way of doing it."
It was at Stoke that Roger heard about the National Rehabilitation Centre for the Paralysed (NRCP), a private clinic near Stroud in Gloucestershire. "People told me that all they (NRCP) do is to get you doing things by using spasm, and itís not really good for you in the long-term. But I thought I would make my own mind up on that."
In spite of his current ebullience Roger wasnít totally convinced and instead of the recommended three month Foundation Course negotiated a special six-week stint. However at the end of that period he immediately signed on for another six weeks, and has been going back to the Centre on a regular basis.
He notes the progress, "When I left hospital I could just about raise my right arm above my head. Obviously there was some tricep activity there, but not enough to do anything useful with. In my left arm there was nothing.
"So it was a question of trying to look after myself at home. There were carers who came in to help me get dressed and theyíd do a bit of housework."
"I remember when I first started (at NRCP) the goal was to use a knife and fork properly, as in hold a fork in the left hand, knife in right hand. At that stage I couldnít hold anything in my left hand."
Weeks later and after a lot of massage, manipulation and very specific exercise, Roger saw the beginnings of improvement. "I started actually holding a fork with my left hand, so stabbing the meat, and cutting it with my right hand."
Small steps perhaps, but momentous for Roger. "I was still not managing to hold a fork properly, but at least I was holding it and able to hold something in place, and not have to rely on somebody else to do it for me."
Roger is the first to admit that it takes hard work and a lot of application. "Itís a slow process and itís only as months went by that I noticed I could do a lot more around the house. Dressing was easier. I got to the stage where my left hand improved, and I could actually tie my own shoelaces. Shaving became a lot quicker. And I could transfer off the wheelchair into the car without any help at all. "Then as my arms got stronger I was able to get the chair in and out of the car myself."
Today, Roger doesnít rely on anyone. He has re-learned to use a computer and to write, and is now back at full-time work. He dresses himself, cooks, shops, and puts most of us guys to shame. "I can put stuff in and out of the tumble dryer, and if I have to Iíll even iron my own shirts. The difficult thing with ironing is not the iron; itís getting under the iron board because the wheels are in the way. Itís not wheelchair-friendly at all."
Although he has come so far, he is still striving for more improvement. But Roger maintains a realistic perspective. "You look back, and itís very difficult to imagine what you were like. Because you get gradual improvement you, as an individual, donít always see it. But people you havenít seen for a while are the ones that notice. Theyíll say, "bloody hell, you couldnít do that before." Then you recognise it for what it is.
"And what it is for me, is complete independence."
3. PURPOSE - Interview with David Heard, Chief Executive and Founder of the NRCP
A company or organisation is only defined by the people that are involved in running it. Particularly in the area of personal rehabilitation, the saying "People don't care how much you know, until they know how much you care", rings true. To find out about the people and to discover the latest breakthroughs, James Blacker interviewed NRCP's founder and chief executive, David Heard M.A. (Ex.Therapy)
JB: David, when and why did you found the National Rehabilitation Centre for the Paralysed?
DH: The Centre opened its doors for the first time in August 1993. The Ďwhyí was the abysmal lack of post-medical rehabilitation facilities for people with paralysis. It was clear that the NHS through the spinal and stroke units was providing high quality care in the acute phase, but once people got to a certain level of recovery they were more or less dumped back into life with little ongoing support.
JB: What was your biggest motivation at that time?
DH: We had been to Russia working on a huge project designed to demonstrate the abilities of people with paralysis. This was the Trans-Siberian Challenge, a 9,000 kilometre trip from the Baltic seaboard to Vladivostock. The plan was for teams of people with paralysis to drive, canoe, sail, ride horse and wheelchair-cycle across the Soviet Union.
In the process, we were taken to the Dikul Institute in Moscow, a unique rehabilitation centre run by Valentin Dikul. Having been to every spinal injury unit in the UK we were amazed at what we saw in Moscow. Cutting a long story short, the next 12 months were spent getting 45 Brits over to Dikul to participate in his treatment.
It became clear that we needed something comparable in the UK and during í93 we negotiated with Dikul to bring three of his therapist here and we then opened the first centre of its kind outside the USSR.
JB: Am I right in saying the Centre is unique in the UK in terms of what
For someone else to regain the ability to form a pinch grip can be life-changing. They might then feed or dress themselves, use a pen or computer more efficiently etc. And that means more self-esteem, more confidence and more control over their lives.
But that still may not be enough. So it is not what I, or my staff think is a success, but what the client values as a "success" in their life.
However, just this week we have seen one of our clients back in full-time
work, living completely independently and now getting married. Of course we
canít claim credit for all of that, but I truly believe that we have helped
two of those aspects directly and perhaps the third indirectly.
We found that she recovered knee and ankle reflexes to a normal level. When she explained this to her spinal consultant he thought that she was mad. He told her it wasnít possible and that whatever recovery she had after two years would be the limit.
However, when he then tested her to "prove once and for all that it is not possible" he was amazed to discover that she had indeed recovered those reflexes. In fairness he has since been very encouraging to her.
What this means is that there is no set period for "recovery". In
fact we have had a client with us who was in a chair for 24 years before
coming to the Centre. That person is making considerable progress and doing
things she didnít think possible.
So we are still learning about the psychology of disability, the plasticity of the brain and the re-development of neural pathways. The human mind and body are wonderfully adaptive and we have to work at extending that comprehension and belief and not to shrink peopleís horizons too readily and in a too formulaic response to their conditions.
Which is a poncey way of saying that everyone who has come to us has achieved some measure of progress, beyond what they were lead to believe. It may not be enough, but it demonstrates that they can improve their physical condition - be fitter, healthier, stronger - and maybe regain some useful function. They may feel better about themselves and it may ultimately lead to a more fulfilling and satisfactory life.
As to the future, we need to work more closely with the NHS Ė the spinal and stroke units Ė so that there is a seamless transition from the acute phase to the chronic phase, from hospital to the real world. And let everybody get the best shot at re-building their lives.
JB: David, thank you.
4. SUCCESS STORIES - Please share with others any good news you may have.
Have you made a return to full or part time employment, or gained new independence, or reduced your need for care, as a result of exercise therapy at the NRCP, or by other factors? Help us to share your message and give hope and encouragement to others in the next issue of this newsletter.
There will undoubtedly have been a time when you were inspired by the achievements of another. Here at the NRCP we'd like ot encourage a united and team approach to sharing good news, inspiring each other and highlighting ways that improvements in quality of life can be made.
To that end, and with your support and feedback, we'll make a regular feature of the success stories of previous and current clients of the NRCP, and others. We'd love to hear from you!
When you have any news to share please get in touch with us, either by email to email@example.com or telephone 01453 887 390. It can be as brief as you wish, a simple "I'm employed now" will be of great value as inspiration for others.
5. MULTIPLE SCLEROSIS - The following is taken from our Cient Case Studies File.
A 56 year old lady, whose first indication was a random, mild loss of balance, which was described as walking 'with a drunken gait'. She was subsequently diagnosed as having MS and advised to walk with a stick. As her condition deteriorated she became dependent on two crutches.
When crossing the road one day, she felt that she could not make it to the other side, and panicked. This resulted in her remaining at home for almost a month. Eventually her GP advised her to use a wheelchair, adding "I've seen lots of people in wheelchairs and they all look happy." Needless to say, the lady wasn't.
She came to the National Rehabilitation Centre for the Paralysed after being in a wheelchair for over a year, and some four years after MS had been diagnosed. After initial assessment, we determined that she would be able to exercise for about one hour each day, and as such designed a therapy programme to suit her needs.
After 13 weeks she was able to walk out of the Centre on one stick again. We had determined that her energy levels were such that she could not walk outside every day and would still use the wheelchair on some occasions. However, she was able to walk for a reasonable length of time on alternate days, with the days between considered as a 'rest' day. Not a cure, but certainly an improvement on her previous situation.
To find out more about how the NRCP helps people with Multiple Sclerosis, call the Centre today on 01453 887 390.
6. STROKE - The following is taken from our Cient Case Studies File.
Not all people who suffer a sroke are middle-aged or more. The condition can also affect the young.
A young lady was just 19 years old when she collapsed with renal failure. Emergency surgery saved her life, but under the anaesthetic she suffered a massive stroke.
The result was chronic hemiplegia - left side paralysis. Her left arm was contracted at a permanent 90 degrees and that hand was contracted into a claw and totally unusable.
Walking was restricted to around the house as she needed the support of a crutch and even then was prone to falls. Formerly a lively outgoing girl, Client E was withdrawn, uncommunicative and a virtual recluse when her mother brought her to the National Rehabilitation Centre for the Paralysed some 20 months after hospitalisation.
She refused to wear skirts, as she couldn't stand the sight of her legs, preferring instead anonymous tracksuit bottoms. Footwear was limited to trainers.
A full programme of stretching, massage and osteopathy combined with very specific exercise therapy saw her regain some functional use of the left hand and arm. This developed into the ability to hold a crutch providing further support for her walking.
A strengthening programme for her weakened left side and general rebalancing of her distorted body resulted in improved posture. This in turn lead to the ability to walk with a more uniform gait, greater mobility and an increase in confidence.
After 13 weeks she returned home with a new found zest for life. She returned to the Centre once more for progressive exercise therapy and subsequently used the services of a home trainer provided by us.
She can now walk confidently with a single stick and has resumed a normal social life, frequently travelling around London on her own. She even visited the Cenre, after a period of two years, wearing a very pretty summer dress and sporting some very stylish medium-heeled shoes.
To find out more about how the NRCP helps people after Stroke, call the Centre today on 01453 887 390.
7. MEET THE TEAM - Head of Training & Development, Jodi Mountjoy BSc Hons
Jodi joined the Centre in 1995 fresh from her native South Africa. She always had an interest in sport and fitness and apart from her own athletics training ran coaching sessions, including her own swimming school in Johannesburg.
Determined in her career choice Jodi graduated with anhonours degree in Sports Science, specialising in applied physiology, biomechanics, concepts and applications of motor learning.
Her involvement with the Centre began as part of her post-graduate development programme, and she hasn't gone back.
In the therapy room Jodi brings a lot of experience to her specialities of gait analysis, partial weight bearing gait therapy and muscle re-education.
She is also responsible for the development of assessment procedures for clients and the prescription of orthoses for client use.
As Head of Training she oversees all staff induction and development, and is responsible for the maintenance of the highest standards in therapy practice.
With the completion of an innovative research project Jodi is about to complete her Masters' Degree with the University of Bristol. The subject of her dissertation - establishing new protocols for balance assesment among those with neurological disorders - is wholly appropriate to the work of the Centre.
Jodi is a member of the Association of Chartered Physiotherapits Interested in Neurology (ACPIN) and is an accredited Sport and Exercise Scientist through the British Association of Sport and Exercise Sciences (BASES).
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