It is over two years since I last contributed to the FSH Newsletter.

I have been very busy with my voluntary community work whilst undergoing hospital tests. All my family and friends enjoy reading the articles in the FSH Newsletters.

The FSH Contact Sheet is a brilliant idea and through this I got in touch with Sue Wright from Basingstoke. We would love to hear from anyone else involved in the group.

I have a wonderful family including my mother-in-law Augusta who comes from Cyprus. They all help me with my every day needs. I am 38 and my wife, Miriam, is 36. We have three daughters, Samantha 12, Lynda 10 and Jessica-Marie who is 3 and an avid lover of Teletubbies. Sadly Jessica-Marie has inherited my condition. She is a regular patient of Great Ormond Street Children's Hospital, attends a special needs nursery and is working towards a main-stream school in the new year.

Kingsmead Estate Community Project - Miriam and I have worked on this project in Hackney since 1992 and have become quite well known. We were interviewed on Ester Rantzen's "Good Neighbours" television show and both received special voluntary awards for our achievements for the community of Kingsmead Estate. We have met many interesting people including Royalty, Government Ministers and several MPs. Miriam and other residents hold an annual Christmas Party for the Estate and this is an action packed day for the 250 children who attend. Sadly, I have had to give up this community work.

I am now confined to a wheelchair following a stroke. However, I am still connected with the Kingsmead Disability Group which I helped to form. The group aims to manage a Community Cafe and provide employment training. We invite specialist speakers to raise awareness and talk on disability issues. We find that very few people have heard about FSH.

As our home was not suitable for a wheelchair we have had to move to another house in Hackney, but we still keep in touch with the Kingsmead Estate.

Miriam and I both want to be involved with the FSH Support Group and we look forward to meeting Lorraine and all of you in person. Keep up the good work.

Ron & Miriam Newman

I first learned of the FSH Support Group in August of last year via the Internet and was kindly made welcome as a new member of the group by Lorraine and Norman. They told me of the annual conference that was coming up in October and invited me to attend.

This simple invitation however, occasioned much thought. My immediate reaction was somewhat negative because I thought that I would probably be meeting people with more advanced symptoms than myself and that I might find that too depressing as a view of what the future might hold for me. My wife, Joanna, thought otherwise and persuaded me that we should both go, which we did.

Did I meet people with more advanced symptoms than myself? Yes. Was it depressing? No!

We found everybody so welcoming and willing to discuss how their FSH bad developed and how they overcame the challenges brought on by the condition that the whole day was a pleasant and positive experience. The interaction between us all outside the formal conference sessions was an important part of the day. The lunch-time catering was excellent, not a good time to be weight watching!

I also enjoyed the conference sessions themselves, and I do think it important to have someone with a clinical and research background to bring us up to date. Some of the things I have been reading in the scientific press lately about slowing or even partially reversing muscle loss in the elderly may have application in MD cases once it is proven effective in humans. The suggestion that next time we might have a talk from a physiotherapist familiar with the treatment of MD patients was a good one. I have met such a person and will pass their name on to Lorraine as a possible speaker.

I think that Lorraine and Norman did a excellent job in organising such a successful day - Thank you both.

Martin Fielden

Reading and hearing about the response of certain doctors and specialists has inspired me to share my experience with you.

Seven years ago, aged 56, I took early retirement from my post as an art teacher in an inner city school. Three years later when I went back to the school on supply I noticed I was having a problem with the three flights of stairs, which I'd run up and down many times a day whilst teaching there.

I decided I had become unfit and approached my doctor who said I was "fit to become fit". Never being athletic, I started off gently with some line dancing. I persevered for several months despite constant backache until I suddenly developed a limp. My doctor considered it could be psychosomatic and would return to normal - at some point in the next year I did ask if it could possibly be muscular dystrophy or multiple sclerosis, and he said "Absolutely not". So, apart from requesting an X-ray on my back and my foot (both of which were normal) I put the matter out of my mind as well as I could.

Several months went by and I saw a chiropodist and a private podiatrist and then a specialist podiatrist recommended in another part of the country and he referred me to the neurologist at his hospital. By the time I saw him the problem had been present for 1½ years and every investigation had been instigated by me. But I still was sure that I would awake one morning and the problem would have righted itself.

After months on the waiting list my appointment with the neurologist arrived. He gave me a brief examination and without any tests or any warning, he told me bluntly "you have a rare, inherited, muscle-wasting disease", adding that it was very interesting. When I expressed my shock he responded with irritation "surely you've known this before now - what about climbing ropes at school?" I asked if I would end up helpless and dependent and he answered "not necessarily, depending on the exact diagnosis after tests". In the absence of any muscle specialist in his area or mine he said he would transfer me to the neurologist at my local hospital, adding he was pleased to meet me and left me with the shreds of my life as I had known it, and a nasty long drive home alone. The nurse in attendance said "you weren't expecting that. were you?"

As I went to my car, mind reeling, I wasn't the same person who had entered the hospital so blithely less than an hour before. I sat for a while, trying to recover from the shock and then set off to drive home going at least three times round the town as I was too disturbed to read signs for the motorway. I was fortunate that everyone else on the road that day drove perfectly as I had become an accident waiting to happen. The old familiar guidelines, the "map" of the person I had been to this point in my life had been swept away without warning by a few thoughtless words.

As the days and months went by, I tried to be positive and bright but always the new knowledge was churning about in my mind, never to be forgotten for a second, the first throught on waking, the last before going to sleep.

Since that day in 1997, I have received sensitive support from the neurologist and his staff in my local hospital, from my children (by an incredible chance adopted) and close friends, from the MD set-up, in particular Kate and her colleagues at the NM Centre at Winsford, Cheshire, who have become an extension of my family.

After such an identity crisis it has taken me about a year to rethink and adapt to the new image of myself and my future, and for my mind to be full of everyday things and not my condition. I am thankful for the good aspects of my life, and the many new friends I've made through this bombshell which splintered my world on 4 July 1997.

Elspeth B Taylor

It is now about 20 years since I was first diagnosed as having FSH/MD. In that time I have tried to live my life as fully as possible, but in recent rears have found life getting increasingly difficult. So I retired from work and invested in a computer in order that I could do some work from home.

I have felt for many years a bit of a freak as I had never met or spoken to anyone else who has the same problem as myself. I have always been the subject of much interest by medical students when ever I have had to attend hospital, although I don't mind this, it does make one feel even more different.

So imagine my delight when surfing the net (my new toy on my computer) I came across the web site of the FSH-MD Group. At Last there were others who had the same problems and suffered the same experiences, some others that could give a lay perspective to the suggestions made by my doctors. I believe the Group can only help to raise the perspective of the illness which does not get very much attention. By the way, I understand why Duchenne MD appears to have a higher profile with medical research and to some extent with the MD Group. This is simply because FSH-MD thankfully, does not usually have such severe consequences.

The Annual General Meeting at Watford was an uplifting experience; I had worried that it would consist of us wallowing in our own misery, which might have a negative effect on me. Not a bit of it, the people I met were charming and mostly positive and it lifted my spirits to talk with others in a similar position to myself. Practical advice and support was offered and I shall continue to support the Group. Well done.

Phil Johnson

I was diagnosed with FSHD at the age of 24 At that time I exhibited weakness rather than disability. I was advised by doctors to keep my weight down and keep as mobile as possible. I took up swimming and 'forced' myself to the pool twice a week.

During my twenties I got slowly worse so that by the age of thirty I was having difficulty with stairs. (I needed the use of a handrail). At the age of thirty six I had significantly deteriorated, used a stick for walking, and was even considering using a wheelchair for certain things. My arms were still quite strong so I was advised to have a scapula fixation operation as this would supposedly give me greater range of arm movement. Having come from a medical family, I did not question the advice and I had the operation. In fact the surgeon, worried about my breathing in later life, decided not to fuse my ribs, and consequently the operation failed.

Disillusioned with orthodox medicine, I began to look for treatment in the alternative world. I read an article about an Israeli, Meir Schneider, who had worked with people with FSHD for twenty years. The article described how he had helped a Brazilian woman called Beatrice with FSHD by giving her an intensive massage and movement programme. I contacted Bea as I wanted to hear from the horse's mouth about the method and whether it really did work. Bea told me that she had moved from Brazil, where she was a professor of occupational therapy at Sao Carlos University and had worked on herself for a year with Meir. She had been so impressed with the method that she had then trained as a Meir Schneider therapist.

I was convinced that I had to try this method even though exercise was a dirty word in my vocabulary as I found it so hard. I saw Meir Schneider every four months for four years for several sessions so that he could monitor and develop my exercise programme. In the first year my walking improved dramatically so that I no longer needed to use a stick, my shoulders straightened and my arms got stronger, I no longer wheezed and no longer got chest infections requiring antibiotics, my face seemed fuller and chewing food was easier.

I was so inspired by the very tangible results at first that I did three to four hours exercise a day as well as a full time job. I also had four massages a week, a necessary requisite if you do so much exercise. (The massage is not conventional massage. It involves alot of passive movement and different techniques for muscles in different stages of dystrophy.) Of course I was unable to maintain such an intensive programme but I now really try to do two hours a day to maintain my gains. I enjoy exercising now, and have found that I really miss it when I do not do it on both a psychological level as well as a physical level.

During the first four years of my treatment my massage therapist was Deborah Smyth, who became quite an expert on FSHD and gave me four massages a week. I now have two massages a week and Lesley Evans and Maggie Lyons treat me. They too have become FSHD 'experts' having visited Meir in San Francisco and worked with him for extended periods.

The Meir Schneider Method of Massage and Movement is no miracle cure for FSHD but it really helps to learn how to manage the illness and thus slow down the progression. Even orthodox medicine acknowledges that exercise helps slow down the progression of the illness, but only Meir Schneider has worked for over twenty five years devising exercise programmes for people with FSHD. (Every person is affected differently and requires different exercises which must be modified as the illness progresses. The patient is taught to devise their own exercises and also to feel when the illness is attacking a new area so they can try and ameliorate the situation).

I have written this article, despite the fact that I hate writing , to inspire some of you to try the method. I have gained tremendous support from the people around me as I soldier on. I feel I have some control over my own destiny now. Above all this method has taught me how to help myself against the odds.

Meir Schneider himself comes every year and talks at the Body Mind And Spirit Conference in May. He also gives private sessions at my home in North London. This April Bea is coming to London and is supervising therapists giving sessions for seven days and is only charging £35.00 per session.

There are now Meir Schneider Therapists all over the country, some with greater or lesser experience with FSHD who would treat you or start you off on a programme. For any further information you can contact Lesley Evans (020 7229 7168) or Maggie Lyons (01225 722 110).

Rosemary Lawy

It is now generally accepted that gentle, repetitive exercises and plenty of rest enhances the mobility of people with FSHD.

Meir Schneider, an internationally famous massage and movement therapist, has been using these principles to help people with FSHD for over 20 years. He has also found that combining exercise with massage can bring even greater benefits. His approach is based on common sense. Initially, the client is assessed to see which areas are more dystrophic than others, to discover which movements have been lost and need to be regained and which muscle groups need to supported to limit or prevent further damage.

Massage then brings much needed circulation to weak muscles - bringing them to a point where they can be exercised without fatigue and without causing harm. Massage also relaxes excessively tight and painful muscles which are overcompensating for weaker muscles and pulling on joints.

Massage is then used in conjunction with an individually designed exercise programme to repair, strengthen and allow the greatest range of movement. It increases stamina and raises energy levels.

All massage for FSHD clients is gentle. More dystrophic areas are treated to an extremely light, circular motion for 30 to 90 minutes in the same small area. All ten finger tips are used to rhythmically stroke the surface of the skin. This is the first stage, and is called 'support massage'. It seems to promote circulation of blood, lymph and other vital fluids to struggling muscle cells. During treatment, muscles 'puff up' or subtlety gain more tone. They are then ready for the second part of the treatment, 'release'.

The therapist spreads out his or her fingers, and keeping them in contact with the client lightly gently shakes. 'Release' relaxes the tension in painfully tight muscles which often cause joint pain. The third stage is 'build up'.

'Build up' is a circular motion of the thumbs and involves slightly more pressure. A deeper touch on stronger muscles can help relieve severely contracted areas which might be painful or may be pulling on a joint, restricting its movement or pulling a bone out of alignment.

During each session the massage therapist will alternate between massage, passive movement - where the therapist moves the clients limbs for them and exercises. Passive movement is important because it gives a person with FSHD the benefit of a lost or difficult movement without straining against gravity.

Passive movements are usually large, circular motions which allow for the full and free movements of joints. The therapist may support the client's foot, ankle and knee and gently rotate the hip or will cradle the wrist and rotate the arm at the elbow or stretch the Achilles tendon, rotate the ankles and toes and work on the calf muscles to help foot drop.

Clients are given a series of exercises to work on at home. These are revised as required. Client and therapist will look at a movement or series of actions like climbing stairs, reaching for an object, or closing the eyelids which are proving difficult and develop exercises to improve it.

Many of the exercises will be water exercises. Exercising in a warm pool has many benefits. The heat keeps the muscles warm and the buoyancy and even resistance of the water allows for many repetitions of movements that may be difficult or no longer possible out of the water. Clients walk backwards, sideways, lift their legs up to hip level and rotate them to the side, allow their arms to float up to shoulder level and rotate. In this way, they develop a more even and balanced use of existing muscles in and out of the water.

Together, massage, passive movement and active movement help maintain healthy muscles, nourish and prolong the life of those which are weakening; while passive movement and exercise give both muscles and joints the chance to move to maximum effect with minimum effort.

The technique involves several hours of massage and exercise a week. Initially clients need to see a therapist every week. But the massage technique can easily be taught to a partner or member of the family and need not be expensive.

Meir Schneider has been training therapists in the UK since 1992. They are intensively trained and highly skilled to work with many forms of Muscular Dystrophy. There are now about twenty in England, Scotland and Northern Ireland, with more on the way. They hope to spread themselves more evenly throughout the UK, Ireland and Europe and to organise workshops and support groups nationwide.

Meir Schneider visits the UK every year. He works from one of his FSHD client's homes in London each May and is available for private appointments. This year there will be the first visit to the UK of one of his therapists, Beatrice Nazimento. Beatrice has FSHD and was one of Meir's clients. She now travels the world teaching his work and will be supervising therapists giving sessions to a variety of clients, including those with FSHD, from April 15-27th, in London.

If anyone is interested, each 1½ hour session will cost £20. There will also be a one day Muscular Dystrophy Training Workshop on April 25th and we need clients who would like to be worked on. Their participation would be free. If you are interested in knowing more, please get in touch with Lesley Evans on 0171 229 7168.

Lesley Evans

How much are we all over the world?
I am FSH
You are FSH
He, She, is FSH
We, You, They, are FSH

But You aren't FSH
You have it!
It is enough!

While living with it,
keep on smiling!

Cheese!

Droopy never smiles with stoicism
Tex Avery's cartoon character is Droopy Dog.
Droopy looks like having FSH.
His face never smiles.
Yet, Droopy repeats all the time:
"You know what? I'm happy!"

Eric Chauveau - France