November 2000 Newsletter


On a personal level, I feel privileged to meet others who suffer from our rare condition and to help in the dissemination of information to members of our group.

The current committee were re-elected in their pasts and will continue to work together to support the group over the coming year.

The meeting minutes have limited space for other items of interest. I will whet your appetites with news that I have been asked, by the Human Movement & Balance unit at Institute of Neurology, to take part in research into the effect on lower limb spasticity of stimulation of the balance centres in the ears. I will let you know what happens as a result of electrodes being attached behind my ears!

We are currently producing the localised membership lists, which we hope to be able to distribute shortly. A copy of the latest accounts is enclosed for information.

2000 Meeting

The days events were steered by David Pearce, group secretary, who outlined the plans for the day and reminded the group of our 'moving forward together' theme which forms a sound basis for our groups development and, in particular, its expansion with new members.

We now have 157 members and efforts will be undertaken to contact those who have still not returned their 2000/01 membership forms. David explained that David Britton was not able to attend the meeting as his wife had been unwell. We wish her well on her road to recovery.

In committee member reports David introduced the new communication material that he had developed, utilising slips and an introductory "brochure" that could be displayed, for example, in hospital waiting rooms. The use of a consistent approach to our communications will put the group on a more professional footing and copies of the material can be obtained from David.

Our objective is to distribute the brochure as widely as possible amongst, in particular, the professional bodies with a view to increasing awareness and expanding our membership. Two new members joining our group, following its display in 4 hospitals, have demonstrated the effectiveness of the material. On your next visit to your consultant or physiotherapist please take along some of our brochures and ask them to display or distribute them appropriately. Contact David for copies.

Mike Fawcett circulated our accounts, which, despite the increased levels of membership subscriptions and donations, showed an overall decline in funds from £1,862 to £1,754. This was due, principally, to purchase of computer equipment and member support, which had both been a positive use of Group funds.

Mike explained that, with the help of Philip Stringer, the membership listing had been broken down into 14 local geographical areas. We hope that this decentralisation will encourage members to become more active "locally" and would encourage members to take advantage of the new lists when they are circulated. The lists have shown certain concentrations of members and areas where we are thin on the ground. Using this information will help us to focus our expansion plans.

Sally Langton explained that she had continued to contact magazines but that recent responses had been limited. Sally added that she had recently spoken to two group members where the preliminary diagnosis of FSP had been mistaken and they were therefore leaving the group. We wish them well in the future.

Stephanie Pengelly reminded the attendees that they were welcome to contact her with any difficulties or questions. She described her recent press and television publicity with FRODO her dog - a few new members had come forward as a result. Further information on CPI (Canine Partners for Independence) can be obtained from Stephanie or direct on 02392 45015 or at

Ian Smith described his trip to America and the important interaction within and between the scientific and "sufferer" groups over the 3-day conference. He explained that there were plans to form a loose international federation of the "sufferers" and that he had a number of contacts in the USA for anybody planning a visit.

David then introduced Martin Worth from the Bath-Knight Company who supply and fit a range of sturdy electric lifts to assist people in getting into and out of the bath. There was a sample lift on display which included a mat developed by group member Sally Langton to improve comfort whilst the sliding belt moves beneath the user. The company can be contacted on free phone number 0500 223442.

The next presentation, from Carol and Richard at the local Citizens Advice Bureau, was on the benefits to which group members may be entitled. They explained that the position was particularly complex as some benefits are dependant on the payment of National Insurance contributions (NICs) whilst others are means tested. In addition some are "gateways" to other benefits. Their key message was that group members should apply for any benefits they think they may be entitled to and to appeal if the claim is rejected.

The focus of their presentation was on Disabled Living Allowance (DLA), and the related mobility and carer elements, which are not dependent on NlCs and is not means tested. It is fundamentally dependent on the claimants' difficulties in walking and is therefore likely to apply to a large number of group members. Associated benefits can include automatic eligibility to a Blue Disabled Emblem and exemption from road tax. In addition, the DLA benefit is generally disregarded as income for the purpose of, for example, Income Support.

They also described Severe Disablement Allowance (SDA) which is being withdrawn for new claimants after April 2001 but will continue to be paid to existing claimants. This benefit is also not dependent on NlCs and is not means tested. The key criteria are that the claimant is incapable of work and must be severely disabled. SDA is dependent on other benefits, for example Income Support. In view of the imminent demise of this benefit there is a help line on 0845 7669999 for further information.

Other social security benefits to which group members may be entitled include Incapacity Benefit, Income Support and Disabled Person's Tax Credit. A useful range of benefits agency brochures describe these benefits and the eligibility criteria. The principle one is SDI (Sick or Disabled) which can be obtained from your local Social Security Office. Brochure GL24 explains what to do if the claim is declined and the claimant thinks the decision is wrong.

Following this presentation we had an excellent buffet lunch provided by the Resource Centre giving useful time for the attendees to mix. After lunch the first presentation was by Sue Edwards who is now in private practice having previously been a superintendent physiotherapist at the National Hospital in London.

Sue described the classic features of FSP leading to the abnormal gait seen in most sufferers. This is generally caused by a tightening and shortening of muscle groups in the legs leading to knees pulling together and feet turning in associated with an exaggerated hip movement to carry the feet through when walking.

The critical treatment then becomes the retention of muscle length and tone and this can be done in a number of ways with the help and guidance of a trained physio. General standing to stretch the ankle muscles to keep the feet flat can be undertaken in specially designed standing frames and even whilst undertaking day to day activities like washing up! The ankles can also be kept at right angles through the use of splints although Sue indicated that there were differing opinions on the use of such splints and patients would need individual assessment.

Sue demonstrated how raising the foot off the ground onto a (low) stool can stretch the muscles at the back of the thighs and said that some flexibility at the hips can be retained by lying flat on the floor on your front. One of the attendees added that she found riding a horse beneficial as it inevitably stretched her legs each time she rode and another attendee said that piecing a pillow between the legs at night time can help. Sue added that a "T" bar might also be useful in bed.

Controlled, gentle exercise of the muscles, with a view to retaining the range of movement, could have a beneficial effect. This might include using stationary bikes in the gym and leg raising in the swimming pool. This can be a difficult area and Sue said that only the individual sufferer could really tell if what they are doing makes them feel any better.

Sue also briefly outlined the drug treatments available including muscle relaxants taken orally or through internal pumps designed to deliver the drugs to the affected muscles more effectively. She also described the use of botulism toxin injections to relax the affected muscle groups but where the size of the muscles, and the resulting large doses of drug, can mean that the treatment cannot be undertaken.

The final presentation of the day was by Dr. Nick Wood from the National Hospital in London. He had slides showing the damage to pathways in the spine associated with FSP and said that, despite being one of a range of related conditions including MS and cerebral palsy, the symptoms of FSP were clearly distinguishable from these other conditions.

Dr. Wood described, using family trees, dominant, recessive and X chromosome linked inheritances. He also described the pure and complex variations of the condition where the former was the classic difficulty with walking and the latter included a number of very rare sub-conditions that could include difficulty with swallowing and skin problems.

Dr. Wood also showed the current range of muscle relaxing drugs used to treat FSP, including baclofen and tizanidine, and reminded us of the common side effects of feeling sleepy or spaced out associated with taking them orally. He added that the less common treatments included cannabinoids (where there has recently been some high profile press coverage with an MS sufferer).

Dr. Wood then showed the current state of play with genetic research with two genes identified and the sites on the chromosomes for a number of other genes found. He said that research was moving forward and that other genes will be found but the future, in terms of specific treatments for the condition and testing for the genes, was not clear and was, at best, still many years away.

Dr. Philip Wilkinson, a researcher who attended the meeting, explained that he has funding for 3 years full time research and will be looking initially at recessive inheritance patterns. His team will be interested in examining patients for clinical features, taking blood tests and, in some circumstances, taking muscle biopsies. He is based at the Royal Free Hospital in London but is prepared to travel to visit families if that proves simpler. He will be writing, through the group, to a number of families to seek permission to undertake the research and I would encourage those asked to support his initiative - only by working together can we hope to "break the code".

To end the day, the attendees were broken down into smaller "local" groups with a view to completing a fact find that David had drawn up and to encourage local networking. Details of the results of the fact find will be included in the next edition of our Newsletter.

Group Funds

We would like to remind group members that we do currently have limited funds available to support the purchase of equipment to help with the rough and tumble of daily living. Please let the committee know if you wish to apply.

Automatic Wheelchair Carrier

If you have difficulty with collapsing your wheelchair and putting it into your car or if you simply do not have enough space for the chair in your car have you thought or storing it on your roof?

If so you might be interested in the above which one of our group members has available at no cost although whoever wants it will need to arrange collection. If you are interested you should contact Sir Ian Denholm on 01505 842406 or by e-mail on This email address is being protected from spambots. You need JavaScript enabled to view it..

The unit is made by Autochair and the advert for it says that it folds, lifts and locks away any folding wheelchair in less than 90 seconds with no physical effort. It is easy to fit and/or transfer to any car although Ian has indicated that it might cost between £100 to £200 to fit to the purchaser's car.

Free Home Insulation

Now that the nights are drawing in and the temperature is starting to drop, have you checked that your home is fully protected against the worst the winter can throw at us?

If you're receiving an income or disability related benefit, including Disability Living Allowance, you may qualify to have your home insulated free. You may also qualify for heating improvements to your home and, if you are over 60, you could even have central heating installed, at no cost to you.

These attractive benefits are arranged through the Home Energy Efficiency Scheme (HEES) and for more information you should write to Energy Action Grants Agency (EAGA), Freepost, P0 Box ING, Newcastle Upon Tyne NE99 2RP or phone 0800 181 667 (England and Wales) or 0800 072 0150 (Scotland).