August 2000 Newsletter

We are still updating our membership lists for the 2000/2001 year and I would like to encourage those of you who have not completed your form from the last Newsletter to do so as soon as possible so that our records can be updated. If you have mislaid your membership form I will be happy to send you a new one on request. Please remember that if you are of limited means we do not require a subscription, only a statement of your continued interest in the group, and its activities. My number is on the inside back page.

Our agenda for the 2000 meeting is almost complete but I am sorry that I have not been able to enclose it with this newsletter as promised. It will be dispatched, with a map, in early August and there is still some room available for those who would like to attend.

I wish you all the best for the summer and hope to see you in September.

Marathon Success

As reported in the February Newsletter, Wendy Berridge and her friend Gail Lawes ran the London Marathon earlier this year with the FSP Group as their nominated beneficiary. As a result of their successful efforts, the Group was presented with a cheque for £660.

The above photograph shows the successful runners with Gail on the left and Wendy on the right. This was the second year in succession that Wendy has completed the Marathon but I am not sure if she will be after the hat trick in 2001!

Their valuable contribution increases the funds we have available to support members of the group (see letter from member on page 2).

On behalf on the Group, THANKS!

New Logo

David Pearce has spent some time considering a new logo for the group and has now developed the following layout, which will be incorporated into all our communications.

We have copies of headed notepaper and compliment slips should anybody need to contact third parties on behalf of the Group. They can be obtained from David whose number is on the reverse of the newsletter.

Our thanks go to David for his efforts in developing this image for us.

Pen Friends

At the recent American conference, I met up with a number of children in the eight to twelve year age range who were there with their parents.

When I spoke to them and they had got over my strange accent, a number of them indicated that they would be interested in having UK pen friends.

If there are any younger group members, or children of adult members, who would like to have an American pen friend I will be happy to pass on the details I have.

Freedom at Last

Group member Sippy Azizollah writes:

I've been a member of the FSP Group for over 7 years now, and the last 2 years have seen my energy levels drop fairly rapidly, due to the fact that I also suffer with Lupus and Fybromialgia (I couldn't be satisfied with just one!).

I walk with the aid of two sticks, but also have a manual wheelchair that has become increasingly difficult for me to use. I'd toyed with the idea of getting myself a power chair, and having been refused by the Wheelchair Service at my local hospital, decided to purchase one with my Motability.

The prices were staggering and, having found the ideal chair, I had to think of a way to try to reduce the Motability repayments so that I could buy it but still afford to live. I set myself a target of raising £1,000.

I remembered that in one of the FSP newsletters, there was an article mentioning the fact that there were funds available for people who needed help purchasing aids to help them get around.

I phoned Stephanie Pengelly (on the help line) and mentioned my idea to her. She said that she felt that the FSP Group would be able to help and said that she would check and ring back. Within an hour the phone rang and Stephanie said that everything was OK and that the FSP group would gladly make a donation towards my chair.

I had written to various other sources and received support from my local pub where I had helped in other fund raising activities.

Within 2 weeks I had 95% of the deposit towards my chair with the FSP Groups being the first I received. Two months on I have the chair and, whilst some say I need L-plates, I'm getting there slowly but surely.

In closing, I would like to thank Stephanie and the FSP Group for helping me to become a totally independent person. Without the Groups help I couldn't have done it.

Sippy Azizollah (The dodgey dodgems driver!)

American International Conference 2000

Ian Smith writes: The above photo was taken at the first international symposium on FSP held in Detroit at the Michigan University building at the end of May this year. It shows me (far left) with Philippe Grammont from France and sisters Cheryl (left) and Kathi from America. Cheryl runs the US web site.

There were almost two hundred people in attendance with 40 medical staff and 145 family members. The conference ran over 3 days with a range of scheduled meetings, or scientific presentations, for attendees to select from. I will be travelling back to America on vacation at the end of July and hope to meet up with a number of the contacts I made at the conference.

It was very rewarding to be in such a group and I will be describing my experience at our meeting in September with further details in a future newsletter.

Treating FSP

Sue Edwards, who was Superintendent Physiotherapist at the National Hospital in London before she left their service early last year, wrote the following article for the group a number of years ago. We are indebted to her for her support over the years.

FSP constitutes a group of clinically and genetically diverse disorders that share the primary feature of progressive, severe lower extremity spasticity (Fink et al 1995).

The most notable feature of this condition is the difficulty in coordinating gait. The pattern of spasticity affecting the legs is usually that of flexion, with the hips pulled in and rotated inwards, the knees bent and tending to knock together and the feet pushing downwards. There is difficulty in isolating the movement of one leg from the other and stepping forwards is achieved only with great effort.

These walking difficulties progress gradually over the years with people often complaining of increasing difficulty in cold weather. Some people may become dependant on a wheelchair for mobility.

Shortening of the more affected muscle groups, which may lead to contracture, is a constant danger and although pain in itself is not a feature of this condition, many people with FSP often develop pain as a result of stiff and painful joints.

Prevention of secondary complications of contracture is therefore of primary concern to reduce the abnormal stresses imposed on the lower limbs. The main emphasis of treatment is that of stretching the more affected muscle groups to maintain mobility and preserve independence.

Specific stretching exercises should be carried out following consultation with a physiotherapist.

These cannot be listed here, as each individual will have different problems necessitating a different regime.

Strengthening exercises are not generally recommended, as these tend to increase spasticity. However, exercise to improve control and therefore strength of the more vulnerable muscles is encouraged.

Splinting may be of value, not only to maintain range of movement at vulnerable joints, but also bio-mechanically to assist in correcting the gait pattern. For example, a below knee case controlling the position of the foot and ankle at 90 degrees may improve hip and knee control during the stance phase of walking. Again, the type of splint and the material from which it is made will differ depending on the presenting signs and symptoms.

With regard to the availability of neurophysiotherapy within the NHS, this will vary from district to district. Most people with FSP will be referred to a physiotherapist, but often following the initial consultation there is little if any follow up. FSP is a relatively rare condition and therefore many therapists may only see one or two cases in their working lives.

Whilst physiotherapy in itself cannot change the pathology of FSP, it is of paramount importance. for therapists to monitor progress and instigate treatment as appropriate. The primary aim of therapy is the prevention of secondary complications, such as contractures, and to maximize independence at all stages of the disease process.

We are planning for Jodie Barber, a neurophysiotherapist, to attend our meeting in September together with Dr Nick Wood from the National Hospital in London and a speaker from the CAB on disability benefits.