ISSUE 2
www.nrcp.co.uk
YOUR WORLD of OPPORTUNITIES...
 
 
"All our difficulties can be overcome, if we just keep talking."  - Stephen Hawking
 
Hello,
 
And welcome to the second issue of the newsletter for the National Rehabilitation Centre for the Paralysed.  Considering the importance of communication and talking between us all, this issue details NRCP's new On-Line Forum, created to help bring people together, to put them in touch with each other and the answers and services that they need.  And to continue in that vein, we have introductions to the work of two complementary organisations, WAACIS, for low cost Internet tuition for physically disabled and sensory impaired people in their own home, and Ricability, champions of consumer information for people with extra needs.

Please use the Contents list coming up to choose an article of interest to you.  As part of our 'Spread the Word' Campaign, please save this as an .eml file, re-open it and forward it on to everyone whom it may help, so that they may do the same and thus keep the ball rolling.  Thank you.
 
 
If you have yet to request your pack...
 
        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 'FREE Information' from the menu.
 
 
 
Contents
 
 
1. YOUR FORUM - It's good to talk, and so NRCP has set up an on-line chat Forum to serve you in a number of ways...
 
2. PHILIPPA HERBERT – BEATING THE ODDS - A former City investment manager, a magistrate, wife and mother, who has juggled all the demands of modern life, in 1994 she decided to add horse trials and eventing to her skills.  Eighteen months later she fell from her horse and collided with a tree, knocking her vertebrae out of alignment and damaging the spinal cord.  Here's her story...
 
3. RICABILITY - For people with extra needs, looking for specialist or high street products or services can sometimes be a minefield. Until Ricability, that is.
 
4. SUCCESS STORIES - 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. SPINAL CORD INJURY - A 48 year old male suffered a sporting accident in 1994.  This resulted in a compression injury to the spinal cord at C4/5, and a seven month stay in the Salisbury Spinal Injury Unit.  His initial goal was "to go back to work, but I would need to be able to walk properly and use a computer keyboard and mouse."
 
6. BRAIN DAMAGE - An account of a young male, 27, who suffered brain damage as the result of a motor accident.
 
7. WAACIS - For the London area, and hopefully other regions in the future, WAACIS provides low-cost Internet tuition for physically disabled and sensory impaired people in their own home.
 
8. MEET THE TEAM - Continuing our regular feature of introducing you to members of the NRCP team.  For this issue, meet our Senior Supervisory Therapist, David Akroyd-Jones.
 
POSTERS - By popular demand, we now have A4 sized posters available detailing exercise therapy and the NRCP.  Call Anne on 01453 887 390, or email info@nrcp.co.uk to request a poster for your Centre, and send a leaflet of your own to us for our information area.
 
FREE Reports - We have added a 'Downloads' page to the website at www.nrcp.co.uk for your information.  These include the NRCP's reports on 'New trials with the Neuro 4 Trophic stimulator' and 'Good sleep is good health'.  It also has reports from outside, such as 'Warfarin vs Aspirin for Stroke?' and 'Regulation of Bone Density'.  Click on 'Downloads' from the main menu.
 
 
 
 
 
 
 
1. YOUR FORUM - It's good to talk...

Like a landscape of overnight snow with not a footprint yet to disturb it, the NRCP's new On-line Forum is ready for the first users.  This is for any subjects as they relate to rehabilitation following paralysis, so covering disabilities, the need for care and carers issues, technical therapy points, returning to work, and so on.

We have arranged this facility to give you all the opportunity to meet others, discuss situations and events, place requests, leave offers, or put a direct question to one of our experts for a reply.

With that, of course, there will also be the opportunity to learn and discover various things from the previous messages, questions and answers of others, as all texts are available for viewing and/or replying to.

The link for your Forum is in the main menu of the website at www.nrcp.co.uk

 
 

2. PHILIPPA HERBERT – BEATING THE ODDS - An amazing history of how Philippa fought back from spinal injury...

 

 

Philippa Herbert is one of those people with enough determination to win wars and enough energy to light a small town. Which is just as well, because in the last six years she has had to deal with some of the cruellest challenges imaginable.

A former City investment manager, a magistrate, wife and mother, who has juggled all the demands of modern life, in 1994 she decided to add horse trials and eventing to her skills. Eighteen months later she fell from her horse and collided with a tree, knocking her vertebrae out of alignment and damaging the spinal cord.

Emergency treatment and then a five-hour operation concluded with the insertion of a stabilising metal frame in her back. This was followed by a six-month stay in the Southwest’s spinal injury unit at Salisbury Hospital. The prognosis was not good - chronic paralysis.

Philippa grappled with the implications of her new condition on a daily basis through the long months of rehabilitation. As she puts it, "There is a strong wheelchair culture in hospitals, and people with spinal injuries are encouraged to be passive. Patients are repeatedly reminded of things they will never be able to do again – activities that the rest of us take for granted; actions and capabilities that help us to define ourselves."

So she left Salisbury convinced that there had to be more, yet unsure where to find it.

Ironically, a year before she took up her sport, a clinic opened in a disused building at Standish Hospital in Gloucestershire that was to become a central plank in her life. The National Rehabilitation Centre for the Paralysed (NRCP) has one aim - to rebuild lives shattered by paralysis.

The origins of NRCP lie in Moscow and the pioneering work of Valentin Dikoul. He had been a trapeze artist with the Moscow State Circus, but became paralysed following a fall during his act. Over seven mentally and physically painful years he struggled to devise his own rehabilitation programme. He developed a comprehensive course of non-invasive exercise therapy - no drugs, no surgery - that enabled him to rebuild his strength and maximise the potential of his paralysed body.

He then persuaded the Soviet authorities that he could do the same for other people and eventually opened his now world famous clinic. Some 12 years later, NRCP founder, David Heard visited the Dikoul Institute. As Heard says, "I had visited every spinal injury unit in the UK and had never seen anything to compare with Dikoul's clinic. There was no high-tech equipment or hugely scientific approach, but the work-rate, the commitment and the results were staggering."

So much so that in the following year Heard helped to arrange for forty-five spinal cord injured people from the UK to attend the Dikoul Institute.

Realising that this was only a short-term solution he then decided to bring the treatment to the UK. So in 1993, with the help of three Russian therapists, using the same techniques, approach and attitudes that had made the Moscow clinic such a success, Heard opened the NRCP.

Since those early days the therapies and treatment programmes have been developed and refined – from hands-on experience, case studies and self-funded research. There are unique techniques employing specially designed equipment for treadmill walking and cardio-vascular exercise, specialist hand and foot clinics, electro-therapy and other treatments. But the underlying principles remain - to optimise the functional ability of the paralysed person.

One of the earliest clients of NRCP came from the Salisbury Spinal Unit and so word got back to Philippa. She recalls, "When I heard about the NRCP approach and the theory of intensive therapy I felt it had the potential to help me."

She came to the Centre, met Heard, saw the work in progress and decided that it was for her. She came initially for a 13-week Foundation Course and after was able to report: "Significant progress has been made. This includes an improved sense of feeling in both legs and feet, the ability to stand and general health improvements."

This latter aspect is not insignificant, as Philippa explains, "Exercise helps to reduce the frequency of minor ailments that can plague the lives of the wheelchair-bound."

That was four years ago and Philippa followed this with regular visits to the Centre to improve her technique and develop new strengths and skills. Through the use of treadmill therapy Philippa has regained the step function. This, in conjunction with the increase in her strength and muscle tone, has enabled her to walk short distances on crutches – a sensation she feels is underrated, emphasising that "The sense of being upright is so important to me."

But there are other aspects of the Centre's approach that she values. "NRCP has allowed me to keep my humanity. Disability can easily force one to lose regard for oneself, one’s past, one’s future, gender, and expectations – people refer to you as ‘the wheelchair’. At NRCP they acknowledge that you are an individual, which has a tremendous effect on your morale - devoted attention is paid to your legs, whereas in hospital you are conditioned never to think of them again."

It is this individual and holistic approach that is at the core of the Centre beliefs. David Heard explains, "We seek to optimise the capacity of every client. Goals are set collaboratively between client and therapist, ensuring that rehabilitation is directed towards helping the client to master skills that he or she values, and is likely to use in everyday life."

"Our programmes are hard work and there are no guaranteed outcomes. But all of our clients make progress. The scale of satisfaction with that progress is a very personal judgement, and ultimately is down to the individual client. It is the relevance of that progress to the client’s own life that is most important."

Philippa concurs and is now a strong advocate of NRCP’s methods. "Even the most severely disabled person will undoubtedly benefit from the work done there. It is by no means a miracle cure, but NRCP is most definitely a really amazing place."

Part of those methods is to design a home training programme for all clients. It is a testimony to Philippa's drive and tenacity that, with the support and skill of her personal trainer, Dave Smith, she has carried this out relentlessly. Heard is convinced that "the key to her continuing improvement is this consistency and continuity of effort."

Most importantly, Philippa is now back to doing some of the things she loves – including riding – swapping her wheelchair for horseback, and feeling free, temporarily released from her immobility. "I am now doing things I never dreamt possible. And when I am back on my horse I forget completely that I am a paraplegic."

To find out more about the National Rehabilitation Centre for the Paralysed, please call 01453 887 390, email info@nrcp.co.uk or check the web www.nrcp.co.uk

 
 
 
 
3. RICABILITY - For people with extra needs, looking for specialist or high street products or services can sometimes be a minefield.
 
However, if you then want to find out more yourself to get independent research on how products compare with each other, then what do you do? This is where Ricability may be able to help.

Ricability is a unique charity that researches and publishes unbiased consumer information on products and services to enable older and disabled people to live more independently. Ricability assesses products and services for their ease of use if you have limited mobility, poor grip, poor sight or are hard of hearing.

Independent guidance

The research is always carried out with disabled or older consumers. The information is produced as a free, colour booklet to provide you, the consumer, with some independent guidance. You can use the guides to compare products and to find out more information. So, if you are looking to make that all-important purchase these guides could help with some useful tips.

Some are available on the Internet at www.ricability.org.uk

Domestic appliances

Ricability has assessed domestic appliances - ‘Making Washing Machines Easy’ (2000), ‘Making Vacuum Cleaners Easy (2000)’, and ‘Making Microwaves Easy (2000)’ are on web-site. Though some models have changed the information is still useful. Other guides cover irons, electric kettles, toasters and tumble driers.

Specialist gear

Inevitably, products change but in some areas not as rapidly as you might think.

The Ricability Ability guide to stairlifts published in 1997 is still the only independent consumer research in the field. It has information to help you choose, how to get one and still useful advice and tips from over 100 stairlift users.


Ins and outs of choosing a car, 1996. This booklet gives advice on what features to look out for if getting in and out of a car or driving one. Includes information on techniques of getting in, details of aids and a run down of some of the ways cars can be adapted along with where to go for more information.

Getting a wheelchair into a car, 1999. Test results of 20 devices to help get a wheelchair into or onto a car – interior hoists, rooftop hoists & racks.

People lifters, 1999. This provides details of the types of devices that help wheelchair users get into a car and has test results on 8 lifting devices.

Communication matters Ricability’s has researched telephone services and community alarms:

‘It’s your call – a guide to telephone services for older and disabled people (2001’) explains what the eight major phone companies offer and the extra services available and how to go about getting them.

Calling for help: a guide to community alarms, 2000. These alarms make it easy to call for help at home. The report gives general advice on choosing and using an alarm with full test results of 16 models.

Parents with disabilities Recent research with Disabled Parents Network (DPN) is to evaluate the ease of use for disabled parents of various items of childcare equipment. At the moment they are researching baby slings and carriers. The findings, available in Spring 2002, will help parents to choose equipment that suits their particular needs.

For more information and a full publications list contact Ricability, 30 Angel Gate, City Road, London EC1V 2PT Tel: 020 7427 2460.

Textphone: 020 7427 2469 Fax: 020 7427 2468, e-mail: mail@ricability.org.uk web-site: www.ricability.org.uk

 

 

4. SUCCESS STORIES - 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 future issues 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 to 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 info@nrcp.co.uk 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. SPINAL CORD INJURYThe following is taken from our Cient Case Studies File.
 
A 48 year old male suffered a sporting accident in 1994.  This resulted in a compression injury to the spinal cord at C4/5, and a seven month stay in the Salisbury Spinal Injury Unit.
 
In May 1998, four years after his hospital discharge, he came to the NRCP.  At this time he was only able to walk a few paces with a crutch, and was unable to use his right hand and arm.
 
His initial goal was "to go back to work, but I would need to be able to walk properly and use a computer keyboard and mouse."
 
At the end of the Foundation Course, he was able to walk four miles unassisted; he could use his right arm functionally, and was regaining dexterity in his right hand.
 
He returned to the Centre in January 1999 for a further three week period.  During that time we saw improved gait, balance and co-ordination; a regaining in muscle strength in his right arm to match the left, and the ability to pick up small objects, such as coins, with the right hand.
 
He is now working 20 hours a week, as a computer programmer, and as his endurance improves he hopes to return to full time work.
 
To find out more about how the NRCP helps people after Spinal Cord Injury, call the Centre today on 01453 887 390.
 
 
 
 
6. BRAIN DAMAGE - The following is taken from our Client Case Studies File.
 
A young male, 27, suffered brain damage as the result of a motor accident.  He presented as a tetraplegic, but with cognitive problems, short-term memory loss and speech difficulties.  He had been discharged from hospital for 18 months before coming to the Centre.
 
Seated balance was almost non-existent and he was prone to falls from the chair.
 
His goals at the outset were "be able to sit unsupported and to feed myself."  Further goals were to regain any function in the left hand, to reduce the contraction in his left elbow and improve function in the right hand.  He could grip with that hand, but had limited range of motion from the elbow and no dexterity.
 
Within the 13 week Foundation Course his seated posture improved sufficiently to dispense with restraining straps in the wheelchair and to sit in a dining room chair unaided.  His inert left arm was released.
 
The fingers of the right hand were able to move independently and he had regained a pinch grip in the left hand.
 
Three subsequent sessions over the next two years saw him able to walk in a Zimmer frame around the house, feed himself and use a computer keyboard.
 
Moreover, his clarity of speech improved and his ability to concentrate and hold conversations returned to a slow, but almost normal, level.
 
To find out more about how the NRCP helps people following Brain Damage, call the Centre today on 01453 887 390.
 
 
 

7. WAACIS - Low cost Internet tuition for physically disabled and sensory impaired people in their own home.

WAACIS is a London-wide charity (Registered Charity No. 1070571), which provides low-cost Internet tuition for physically disabled and sensory impaired people in their own home.

The WAACIS course is designed for beginners and consists of ten sessions of one-to-one home tuition and, apart from a one-off registration fee of £5, is free for those whose income after tax is less than £150 per week. All we ask on the technical side is that students have access to a reasonably up-to-date computer and a modem. Once this is established potential students are visited in their home for a Preliminary Assessment session to assess their suitability for the training course.

The range of topics covered is geared to the needs of the individual student and includes tuition in surfing the world-wide-web, exchanging email messages with friends, on-line shopping for goods and services, and the use of chat-rooms. Our network of carefully selected tutors have excellent technical ability and good teaching skills, and many have specialist experience of working with the disabled. In particular, tuition of aurally and visually impaired persons.

The WAACIS service using freelance tutors was started in 1999 and welcomes applications for study from any physically disabled person living in one of the London boroughs.  You can learn more about WAACIS from our
information-packed website. The address of which is
www.waacis.org.uk.

 
 
 
8. MEET THE TEAM - Senior Supervisory Therapist, David Akroyd-Jones BSc Hons
 
After a varied career in 'the real world', including some success as a songwriter/musician (he still collects royalty cheques on his songs) A-J opted for a complete change of direction.  Putting himself through college he emerged with an honours degree in Sport and Exercise Science.  His specialty was physiology, biomechanics and psychology.
 
He then put this into practical perspective working as a fitness consultant for private health clubs.
 
A-J has a life-long passion for martial arts.  He is a registered coach with the British Council for Chinese Martial Arts, and the National Coaching Foundation, and has taught in the UK and Hong Kong.  With these experiences he developed an interest in the treatment of sports injuries and exercise therapy.  In August 1998 this led him to a training and selection weekend for therapists for the NRCP.  He has never looked back.
 
He has continued his personal development, having completed a sports massage (ITEC) qualification, as well as tutor training in sports massage with the Academy of Sport and Exercise Sciences.
 
He has been nominated for professional accreditation with the British Association of Sport & Exercise Sciences, and maintains his interest in things oriental with a study of Chinese medicine.
 
At the Centre A-J has his own client list, but also specialises in electrotherapy, gait analysis and muscle and mind re-education through treadmill therapy.  He is also developing the cardiovascular programmes.
 
As Senior Supervisory Therapist he is responsible for overseeing the team performance and for ensuring high standards.
 
 
 
 
 
Your World of Opportunities: To submit additional emails to receive this newsletter, or for other requests, please email info@nrcp.co.uk
 
 
Thank you for your support.
 
 
 
 
 
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The National Rehabilitation Centre for the Paralysed
Stuart House, Butt Street
Minchinhampton, Stroud
Gloucestershire
GL6 9JS

Tel: 01453 887 390
email: info@nrcp.co.uk
website: www.nrcp.co.uk