February 1998 Newsletter

 

To have reached a membership figure of 102 means that in recent months we have had a relative deluge of new members. Welcome to the FSP Group, and we hope you will find some value in being a part of that group. Please remember that the prime aim of the group is MUTUAL support, so do use the knowledge of others to gain support and information, and please pass on your own experiences.

A list of new members’ names and telephone numbers appears later in this Newsletter. Please retain these as the full membership list is only reprinted annually.

Rising membership has revealed a few administrative weaknesses in the way in which we have dealt with initial contacts. I apologise for any shortcomings you may have experienced, and if you feel there is a possibility that you have not received all our info sheets please phone me up. Hopefully the new system we now have in place will mean fewer -if any -problems.

Our chief recruiting source is Sally Langton. Sally works unceasingly as an unofficial communications officer contacting many charities, support organisations, hospitals, media organisations etc etc to spread word of the Group’s existence. My gratitude to Sally for all her hard work, and also this quarter she has kindly agreed to tell of her own experiences with FSP.

Sally Langton’s ‘story’

"In our family FSP comes on between 45 and 50, but we don’t know further back than my grandmother. I always complained of my father being so slow, and now I have got my ‘come-uppance’ as I am even slower! I was persuaded to have tests aged 47 and was told that there was "absolutely nothing wrong apart from rather excitable legs", and I was subsequently diagnosed at 51. I was put on Baclofen which caused severe headaches and as it did not improve my walking I soon stopped taking it. It is rather interesting that my brother, three and a half years older than me (and also an FSP sufferer), has been on it for some time and although he can walk far more quickly than me, his legs are quite floppy.

After diagnosis I was sent to the local physio department where they had never heard of FSP and gave me exercises etc for MS. The most useful information gleaned was to put a pillow between the knees, particularly at night, and I only wish I had heard that tip years before, to perhaps prevent some of the distortion.

In our family we have severe balance problems, and although it seemed strange to use a walking stick, I quickly progressed to two. I was very interested at the Birmingham meeting to see that, apart from a few wheelchairs, most people used sticks. I found sticks infuriating for two reasons: grovelling about trying to find them, and I see no point in getting from A to B if you can’t carry anything. I discovered the Tri-Wheel Walker and made a bag to suit, and it is fantastic for both shopping and gardening. I was asked by the Red Cross Medical Centre in Leicester to manufacture bags for ordinary indoor walking frames, so in the interests of designing the bag I tried out the frame, to find it to be invaluable. I now use a three-pronged folding ‘A’ Frame which easily goes in the car and can be used in one hand like a stick, when going up any stairs, and it does not have quite the same awful image as a Zimmer!

I used to be an Occupational Therapist, but have spent the last 39 years making industrial models and designing new products, including some for the disabled. For the last 14 years I have also been on the REMAP Panel - a nation-wide voluntary organisation making individual aids for disabled people where there is nothing commercially available, and at no cost to the client, but we do need people to tell us what problems they have so they can be put in touch with their local panel."

FSP - the diagnostic trauma

I all too frequently hear harrowing stories of difficulties experienced by members in receiving an accurate FSP diagnosis. This is a known dilemma for patients and professionals alike, and the ‘relief’ when the correct diagnosis is given is palpable. I am indebted to Mavis Lampard, one of our new members, for sharing her own experiences with the Group. This is her story:

"During her early fifties my mother was diagnosed as having Friedreich’s Ataxia. Since that time she has run the gamut of callipers, walking frame and now at 76 years of age is confined to a wheelchair.

Three years ago, my then 12 year old granddaughter, began to fall and suffer from leg pains. On visiting her GP the question was asked if any similar conditions existed in the family. At the mention of Friedrich’s Ataxia, my daughter, her four children, her sister and her two children were all referred to a geneticist at Southampton General Hospital. They all have the same GP.

Feeling left out I visited my GP and requested the same opportunity. Little understanding was shown at first, but he decided after an examination, that I may have had a tumour on the spine, and should see a neurologist. This would take six months on the NHS, privately within the month.

I went to King Edward VII Hospital in Midhurst, and saw Mr John Patten who immediately diagnosed ‘late onset FSP’. He wished to examine other members of my family and subsequently confirmed that my mother had FSP and that one daughter and the grand-daughter had signs of the condition but it had not yet manifested.

As a result of my daughters’ referral to the geneticist, we were all seen by a Mr Eli Hatchwell from the Genetics Dept at Southampton University who is researching this condition. He was particularly interested in our case as there are four generations from which he could take blood samples. These samples were taken from every member of my immediate family and at a later date he extended his enquiries to other members of my mother’s family scattered across the country. The condition was confirmed in an uncle and his two adult children. We requested that we be kept informed of any developments in the research, but were advised that this would be a long term project.

Annual Meeting 1998...

This is only a rumour, but mark your diaries for Saturday 11th July.... The committee will very shortly be discussing the viability of holding a one-day meeting in the summer. If you have any strong views on the subject, or would like to be involved in its organisation, please get in touch with the Secretary as soon as possible. A definitive statement will be made in the May Newsletter.

Christmas Cards ‘98...

Sippy Azizollah is likely to be going ahead with the production of an initial batch of cards, with the aim of raising the profile of the FSP condition. Send one to your MP, and to your high powered friends! Details to follow.