At the end of last year Robin Brown decided to stand down as Chairman of our group for personal reasons and we thank him for all his years of hard work on our behalf.

We are delighted that Gordon Nutter has agreed to take on this demanding role and we wish him good luck and success in this position.

I am delighted to welcome you all to this our second newsletter. I must apologise for the fact that it has taken so long to publish, but unfortunately we did not have enough articles. Please can all our members find a few minutes to jot even a few sentences down, either about your own experiences or helpful hints to other members. This would be most welcome as this is really our only means of contacting each other.

I am delighted that Gordon Nutter has agreed to take on the role of Chairman of our group and wish him good luck and success in his new role. I can assure him that we will give him all the help he needs.

I am pleased to say that we receive many enquiries from all over the country about FSH not just from potential new members of the group but from Health Councils and various charitable groups, so our name is becoming very wide spread. I am also on the mailing list of the FSH group in the USA and regularly receive their newsletter.

If any members would like to distribute a copy of our newsletter or information sheet to their local library, GP or hospital, I have a good stock.

I do hope that we will be able to meet at our annual meeting which is being held on Saturday 18th October at the St Mary's Hospital, Green Hill Road, Armley, Leeds LS12 3QE. I can promise you this will be a very interesting day.

It has always been our policy to try to hold our Annual Conference at a different venue each year, in different parts of the country, so as to make it possible for our members to attend as often as possible.

Lorraine Jonas

I have been able to meet many FSH Support Group members at the various annual gatherings my wife and I have attended in the last 5 years . In the next 12 months I hope to meet many more, particularly those of you who have expressed an interest in the group's activities. I am looking forward to our annual meeting in October, and also hope to attend the MDG Northern Regional Conference in November.

Now aged 61, I was diagnosed as having FSH in my early teens. Thankfully my 2 children are fit and healthy and life has been good. I have worked as an accountant from home since 1974 and appreciate being in control of my own office hours. There are many occasions when I feel exhausted in the morning but full of energy later in the day. Modern technology is a boon to those who are immobile and I enjoy using my computer. I haven't scanned the Internet yet but I understand there are some interesting FSH Bulletin Boards. I have just taken delivery of a new powered wheelchair and have had an electric hoist fitted to my estate car.

Choral singing was my main hobby until clambering over platforms became too difficult. I still attend choral concerts in Leeds town hall and Wendy and I enjoy playing bridge even though we frequently end up in the wrong contract!.

I work as a volunteer at the Leeds branch of D.I.A.L. (Disability Information Advice Line) and find this a rewarding experience. My previous experience as an advice worker at the C.A.B. has come in useful and I am now learning about the many issues which face people with a disability. I enjoy the privilege of being able to share other people's experience.

Unfortunately the FSH Group is not represented on the MD National Council. However, we are fortunate to have the stability of Lorraine and Norman Jonas as our Secretary and Treasurer.

Considerable thanks are due to my predecessor for all his work over the last few years. I am hopeful that our members can be persuaded to take a full part in promoting the groups interests in the months ahead. Telephone calls and letters will be most welcome.

With best wishes

Gordon Nutter

Buy flat shoes in any styles that stay on (sounds obvious) with rough or rubber soles rather than smooth plastic/leather soles. Have them re-heeled regularly. Shoes can be modified to combat foot drop. The National Hospital in Queens Square London can do this but it takes 4-6 weeks and they do charge for this. Alternatively, this cam be done by a local cobbler within a few hours.

Foot drop can cause ingrowing toenails which require treatment by a qualified Chiropodist on the National Health.

Exercise: Physiotherapy:

Properly prescribed exercises, after a thorough assessment of the individual, can slow down the rate of deterioration and helps to keep muscles working that might otherwise weaken because they are not used.

It is important to find a physio who knows about dystrophies, and have exercises prescribed for your particular weaknesses, rather than general exercise such as swimming (although this is still useful).

Start working on the symptoms before they become a handicap.

Sheila Hawkins

I was diagnosed with M.D. around 1964. My advice to anyone with FSH MD is to keep doing what you can do for as long as you can do it - Ignore anyone else who tells you that you're being too independent - whatever that means. (I was told this when I was in my 20's). They won't be around when you're left to fend for yourself. And they don't care how much you lose or how independent you end up. So resist the wheelchair and its easy 'solution' to walking difficulties.

Exercise whatever you can for as long as you can. I have a home-made arm exercise over my settee. It's attached to the track of my ceiling hoist (Shhh, don't tell them!) and consists of a length of mountaineering rope put through a pulley with hand loops knotted in at intervals on one end and a 2kg weight tied at the other end.

By pulling down each loop in turn I can raise the weight up to the pulley, then I put my hand through the lowest loop and pull down. the weight pulls up my arms, which I can normally not lift above shoulder height. I do three sets of as many pulls as I can do, not as much as I should, but at least 4 times a week.

You may find that you can use a similar piece of equipment at a local gym: I don't know what it's called but you pull down using both hands and you can also pull up using both hands. For safety, have someone looking out for you when you get tired, to take the pulley from you. The weight starts at 2.5kg, which most people with FSH should be able to manage. I can do a good lot of pull downs at 2.5kg; several at 5kg; then a few at 7.5kg. Don't be shy: give it a try!

I've only found one gym where I was made unwelcome, but that was by the manager, not the patrons. There will be a few others though, so be warned. Don't be afraid of looking silly, either. I've never been made to feel foolish by anyone I've met in a gym - rather there's a sense of sharing, of everyone wanting to keep as fit as each one can.

Lin Wilson

Congratulations on the very first issue of the FSH News Sheet, it was a pleasure to read. I know the feeling of putting a newsletter together, as at present I am writing my first Chairperson's report for the Kingsmead Community Trust, a limited company and registered charity.

I am a sufferer from FSH, and also have to wear hearing aids through my deafness, although being involved in the Kingsmead Community Trust has helped my muscles not totally stiffening up.

My wife Miriam and I, found the article "What's Wrong With Me?" very interesting. It is very similar to what we have been going through, apart from the operations. It will be very interesting to hear Nicholas Haworth's final results.

In December 1994 we had our third child, over the Christmas period. I find it very hard to help Miriam with certain things around the home.

I would very much like to thank the FSH Support Group, in particular Lorraine and Robin for their kind support and knowing that they are at the end of the telephone line whenever somebody like me needs questions answered, in particular when told I have the condition Muscular Dystrophy (FSH) they reassured Miriam and I.

Keep up the good work.

Ron & Miriam Newman

When I came before I discussed the areas of research I would be looking into. Unfortunately these have taken a long while to get off the ground. You may recall that one of these studies involved the taking of a muscle biopsy. Currently I have enough volunteers to make a study, but ideally we could do with more volunteers so I am writing now to see if you could circulate a request for more volunteers with FSHD for the muscle biopsy in your next newsletter. I hope the following paragraph would be acceptable:

Do you have FSHD? Are you due to have an operation? Are you interested in helping in FSHD research? If so please read on:

I am writing to call for volunteers to help in research into FSH. The study is looking into proteins that make up the structure of our muscles and is particularly designed to see if there are any detectable changes in the muscle proteins of people with FSHD. The study involves having a muscle biopsy, usually from the upper arm (deltoid muscle) or thigh muscle (quadriceps). Such a biopsy is usually done under a local anaesthetic but a number of people would be prepared to have a piece of muscle taken when they are having operations for other reasons. The source of muscle is just as acceptable to us and involves the minimum of inconvenience to volunteers. If you might be interested in taking part in this study please contact:

Dr Mark Rogers,
Muscular Dystrophy Group Clinical Research Fellow,
Institute of Medical Genetics,
Cardiff
CF4 4XW

who would be very happy to send you further information about the study. Any helpful comments would be most welcome.

Dr Mark Rogers

Not long after I became a subscriber to America On Line I met a woman with FSH. She was the first person I had ever met with MD. It was quite an eye opener for me. Until that time I felt alone in my experiences and it was good to have someone to talk to and share with. I watch the bulletin board on the web for FSH and have decided to start an online interactive chat so that we can share information, ideas and lend support, I have been working on this for about a month now and have received over 75 responses from all over the world from others that want to participate.

The problem was that there are so many different servers such as America On Line, CompuServe, Spynet, ATT, etc. that it was necessary to find a site that all could access. That was resolved by going into MIRC. We have been having chats on Sunday nights at 8:30PM EST with individuals from the US, Canada, Greece, Australia and France.

Unfortunately, I have been getting e-mail from many who do not yet know how to access that site. I sent instructions to those with America On Line and Windows 95. I can't help the others but they can ask advice from their server.

At this time we are a very small group but in time I hope others will be able to join us. Eventually, I would like to have a calendar of topics and perhaps some guest speakers. I feel it will benefit us all.

I gave up having a bath more than 10 years age due to the problems in getting out, and installed a shower cabinet. This has been manageable until 2 recent falls have resulted in a loss of confidence. The shower doors open inwards, the lip on the shower is too high for a safe exit and there is no room inside the cabinet for a seat or handrails.

For help and advice I made an appointment to visit the William Merritt Disabled Living Centre in Leeds. They were able to demonstrate every conceivable method of bathing including al the usual bath aids, the Parker Sovereign Bath as recommended by Philippa Harpin and many modern shower units.

At this stage I was anxious to have something of use both at home and to take away on holiday. The Mangar Bathlift works well, but was too heavy for my wife to lift in and out of the bath every day.

The Bath - Bubble, however, is light and manoeuvrable and appears to be simple. A plastic bubble is inflated so that you can sit comfortably while it lowers you to the bottom of the bath. By twisting the valve the bubble will bring you back to the top of the bath. I was able to persuade the local agent to lend me one for the weekend and I soon had enough confidence to get in and out of the bath unaided. The Bubble inflates to the top of the bath and in that position I find it easy to swing my legs out and stand up. The Bubble and the small motor unit which inflates it, pack conveniently into a bag which my wife is able to carry easily. The recommended retail price is £410, but the unit may be available through Social Services.

For further details contact the manufactures: TS Ability - telephone: 020 8761 1110.

Gordon Nutter

Lin Wilson

From the age of 10, I knew I had a problem with my arms and shoulders. My mother took me to the doctors and I was diagnosed as having a "Frozen Shoulder" and we were told that it would eventually sort itself out eventually. I am still waiting!

At school I learned to keep away from situations where I might need to use my arms and shoulders - e.g. trying to lift weights during a games period.

My problem persisted but I learnt to live with it and got on with my life. When I was about 12, I took up cycling, joined a club and enjoyed it, but I just didn't have the stamina to cycle for very long and eventually tired of being tired and not understanding why, I gave up cycling.

After various jobs I eventually ended up as a bus driver, a job I enjoy and can do as buses now have power steering and are either semi automatic or fully automatic. After bus privatisation in 1986 the Company I work for was sold. Different contracts were envisaged, one being that drivers would perhaps clean their own vehicles. For obvious reasons this would have caused me a problem as by now my shoulders were a lot tighter and restrictive and I had some pain occasionally.

Off to the doctors I went, not the same one I hasten to add, and after many tests etc., FSHD was diagnosed. This hit me like a bombshell and I went home to worry and contemplate. At more or less the same time my sister was also diagnosed with FSHD.

I bubbled along for a few years, joined the FSH support group and waited to get worse and perhaps lose my job. All sorts of advice has been given to me over the years including exercise, but until recently I discounted this.

About 3 years age my weight was a problem so I joined a slimming club and visited the local council run leisure centre. I was given some good advice and encouraged to join the gym. After my induction the instructor suggested exercises for me to do round my condition.

Initially I was very tired and I probably did too much too soon, but I stuck at it. The exercises I do will not cure my FSHD but I feel a great deal better physically and am more confident. My shoulders are a lot looser than they were. I can now use the rolling road for up to 1-5 minutes and use the bike and step machines.

I am fortunate that my FSHD is not very severe but I have found that through regular exercise my quality of life has improved.

Andy Findlay

I can't use the sauna around the corner
'cos the mans says I can't
Unless at times of the days when HE says
I can, but I shan't accept his conditions.
So our positions remain at stalemate,
He does what he will 'cos the Equal Rights Bill
was blown out by the State, His "insurance dealings"
and "other people's feelings" are just excuses like
"Fire regulation"
"Money considerations"
"Not enough room"
"National heirloom"
"Not enough demand"
And all the other underhand "reasons"
Trotted out season after season
To stop wheelchair users and other Life Lottery losers
From taking an equal place in the human race
Eye contact share
So I can't use the sauna around the corner
'cos the man says I can't
Unless at times of days when HE says I can.
But I shan't accept his conditions
So our positions remain as stalemate.

Lin Wilson