May 2003 Newsletter

I anticipate most of you would have already started thinking about a relaxing summer break. I know through speaking to several of our members fairly recently that they are worried about the difficulties that can arise when travelling (especially if journeying alone). All I would say is organisation and planning ahead are the key elements for a well deserved worthwhile holiday. There are many organisations that would be more than willing to assist you if given prior notice. For those of you that are taking a vacation have a superb time and spoil yourselves, you deserve it. You never know you could return home with some useful information or humorous holiday tales, that I could include in subsequent newsletters.

Is it time to buy a hat?

Congratulations to Stephanie Pengelly (help line) and John Flower, her husband to be. They will be celebrating the big day in style on Sunday 31st August. I’m sure you will all join me in wishing them a whirlpool of future happiness.

The button that could save your life

Living alone, an accident in the home or a disability can often lead to worrying, uncertainty and loneliness. However, with Age Concern Aid-Call, there is no minimum age requirement and you will never need to feel alone, safe in the knowledge that at the press of a button, one of your nominated key holders will come to your aid in an emergency.

You can choose two or more contacts from friends, family and neighbours as key holders, in the knowledge that there is always a friendly face to help. In the unlikely event that none of these contacts are available, the switchboard would then contact the emergency services.

Age Concern Aid-Call is a communication system that enables you to call for help at any hour of the day or night, simply at the press of a button. Age Concern Aid-Call gives you independence and security whilst providing you with peace of mind that help is at hand when it is needed. I have used this service now for approximately two years and it has proved invaluable in giving me peace of mind and is very economical at £2 per week after an initial charge of £5 (this charge may vary slightly in different areas). Like myself, most of you are probably aware; we all at certain times more prone to a risk of a fall when on our own, whether indoors or outdoors. The button itself is small, portable, convenient and very light and can be worn almost anywhere on your body at your own discretion. If you would like more information or a free demonstration, you can call Age Concern Aid-call on 0800 772266. Alternatively you may wish to visit their website www.aidcall.co.uk or email This email address is being protected from spambots. You need JavaScript enabled to view it.

Motability

This is something that many of you may find interesting concerning the Motability contract hire scheme. I recently enquired about a mobility grant for a hand control adaptation to my vehicle. I filled out all the necessary funding application forms and everything was going really well and I was informed that although the administration process might take a while the funding was available. I went away feeling elated in the knowledge that I would soon be able to travel longer distances with ease. However, I have now come across a problem, if I accept the grant, the adaptations would have to be made to my present car. Why is that a problem you may ask? My present vehicle is due to be changed in November this year and unknown to me, Motability, when funding mechanical hand controls, will not transfer them from one vehicle to another.

Apparently this is for a number of reasons, including the cost of refurbishing hand controls and changes to the vehicle they are being fitted to. It was pointed out to me that many other companies, as policy will not transfer mechanical hand controls and that motability fully accepts their reasons for this decision.

I would advise anyone that prior to making any adaptions or modifications to their motability car seek advice by calling Motability Operations on: 020 7620 0400.

Access for disabled is soon to become law

As this is the European year for the disabled I thought it might be a good time to remind everyone that on October 1st 2004, the final stage of the goods, facilities and services provision of part III of the disability discrimination act (DDA) comes into force. When the new law comes into force, everyone is supposed to be able to have access to whatever facilities they want to use –hotels, pubs, restaurants, cinemas, churches, shops, transport etc – the list goes on and on, and it is only fair that we all have accessibility.

The new duties will apply to businesses and other service providers where physical features make access to their services impossible or unreasonably difficult for disabled people. They are a further important step towards ensuring that disabled people have access to services, which others take for granted. The DDA has stressed that although quite a number of places are already making changes (wider doorways, wheelchair accessible toilets, ramps etc) there is much more that can be done.

We already have a new law against discrimination regarding race, colour and creed and it is sad to think that there has to be a law passed before people will take the trouble to carry out alterations to their premises for people who are unfortunate enough to have a disability.

The Disability Rights Commission has produced a series of booklets, which aim to help people understand and respond positively to the changes being made. Many of these are at little or no cost. I am sorry I do not have a forwarding address for these but you can download the guides from the DRC website at www.drc.gov.uk and go to the information and legislation section or call 08457 622633.

Orthaheel

Orthaheel is an orthotic shoe insert, invented by Phillip Vasyli. It helps to re-align the foot to the natural position and corrects body posture, relieving many complaints in the process.

Rolling over of the foot commonly causes heel and knee pain. As the foot pronates, the arch collapses and the muscles and supporting structures are forced to stretch and elongate. This puts traction and strain on the ligaments running from the heel to the toes.

In turn, the heelbone may “respond” by developing a bony growth right in the centre of the heel – the heel spur.

As the foot pronates, the lower leg (tibia) internally rotates, putting forces on the kneecap and weakening the muscle structures, causing knee pain. By realigning the lower limb and preventing the feet from rolling inwards, ORTHAHEEL reduces internal rotation of the leg and takes away this common cause of knee pain. As the feet roll over and the legs internally rotate, the pelvis is forced to tilt forward resulting in increased curvature of the lower back. In turn this causes tightness and stiffness of the lower back muscles. ORTHAHEEL helps align the body posture by controlling the feet, reducing internal of the legs and forward pelvic tilt, therefore, easing lower back pain.

ORTHAHEEL was awarded the silver medal at the 21st exhibition of new inventions, Geneva, Switzerland.

ORTHAHEEL can be purchased from Boots or directly by calling 0800 435 176 or by visiting www.orthaheel.co.uk (free postage and packing).

Autochair

Autochair, the automatic wheelchair carrier is specifically designed to give independence to those who are wheelchair bound but have a degree of motability. Once you are in your car Autochair will fold your wheelchair away and store it safely on the roof of your car, ready to be used when you reach your destination. It couldn’t be simpler – Autochair folds, lifts and locks away your wheelchair unaided in less than 90 seconds.

Autochair is Motability accredited and home demonstrations and fitting throughout the U.K. can be arranged. For more information, contact:

AUTOCHAIR
Milford Lane
Bakewell
Derbyshire
E45 1DX

Telephone: 01629 813493
Fax: 01629 814725
Freephone: 0800 214 045
Website: www.autochair.co.uk
email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Follow up article “For those of you with bladder problems” from FSP February Newsletter 2003.

I am now 63. At about 50 I started to notice increased urinary frequency and urgency. Whilst this may be an embarrassing topic for open discussion, I think it is fully worthwhile that I offer my views to all FSP colleagues. Not everybody will find this (yet) appropriate, but it is very likely that as your age increases, you may need to seek help in the supply of an aid to combat the inherent problems of getting to the toilet on time.

<>Anyway, let me now explain the remedy which I am able to use. This is called the urinary drainage bag system. It involves the wearing of a sheath, fitted to a narrow tube, which leads to a bag, which is strapped, or otherwise fixed to the lower leg. Such a bag may hold up to 750ml of urine which of course means that it needs to be drained off from time to time (forgetting can be an embarrassing experience). Draining off about 3 to 4 times a day is normal for me.

During the night I attach a larger “night bag” to the end of the other bag and I’m able to pass water safely all night. If you feel this method may be beneficial I recommend that you see your GP to see if this equipment can be made available to you. My tilt has been made “male only” but a similar system for ladies involving the use of a catheter is available. I end with a wish of good luck to anyone turning to this remedy.

J.M.

Follow up article “Profiling bed” from FSP February Newsletter 2003.

Dear Sharon, I have received the FSP newsletter, read the part that you told me about your bed, now I will tell you what I have done. For quite some time I have not had a good nights sleep. The bed we had was only 3 years old, but too firm for me as I cannot turn over in bed and I have to move my legs manually. I can walk but have trouble in bed as for turning, so we went to look for a new mattress.

Off we went to the bed shop to view the “Tempur” bed (expensive). The lady told me to lie on the bed and give it a try, however, you tend to sink in the bed as it moulds around the body, so this was no good for me as I could not turn again. After trying various mattresses I found the “Waterlatex” which allowed me to turn without any trouble, so we decided to purchase one. When you collect the mattress it is vacuum packed and when unwrapped you have to leave it for several hours to get air into it. We left it for 2 days as it comes with a slight odour, and on the label it does inform you that the odour will disappear after a few days, which it did. Although expensive at £400 it has proved invaluable.

I thought I would let yourself and other members know about this mattress, because if there is anyone who needs a replacement mattress, then the “Waterlatex” may well be worth considering.

The Strümpell-Lorrain Association – French support group for FSP

Here is some more information about our support group. All the Strümpell-Lorrain Associations news(the European network, the quarterly newsletters, a page in English) can be found on our internet site http://asoc.wanadoo.fr/asl.spastic

Our last contact was on September 22nd 2001 at the AGM in Milton Keynes. A few new events have come to pass since we presented our group to you then.

  • Each year in December, support groups for rare disorders meet in Paris and take part in a walk to draw attention to these diseases. This event, organised by Alliance Maladies Rares, is part of a television programme which continues for 30 hours and aims to call on national solidarity to fight against these genetic disorders. The public phone in to promise donations and 86,000,000 euros were donated in 2002 during this telethon.
  • SCD Euro (spino-cerebellar degeneration in Europe): This group which already included Great Britain, Germany and France has been strengthened by the arrival of a new Spanish national support Group, the AEPEF (http://es.geocities.com/aepef/)
  • In August 2002 a congress was ordered on Familial Spastic Paraplegia and its theme was the quality of everyday life. During 3 days participants were able to meet up, have some treatment, work and have fun! Seven medical researchers and paramedics (physiotherapists, occupational therapists, psychologists) gave us the benefit of their experience and knowledge. Accounts of the most important of the medical conferences will be translated by Gillian Dupuis and then published.
  • With 550 members (of which 440 are affected by the disorder), the Strumpell-Lorrain association continues to grow. It is currently undergoing reorganisation: election by the board of a new chairman, the role of regional delegates and the sharing and definition of responsibilities.
  • We have a discussion forum by email and would be very happy to include members of the British FSP support group. Several languages are used but in the majority we speak French. It is free and anyone wishing to join us should contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.

Tom Wahlig Stiftung (TWS) – Tom Wahlig Foundation

Here is some information about the organisation which was founded in 1998 especially for FSP.

The foundation has been named after its founder Dr Tom Wahlig

It is an independent welfare foundation, organised under the roof of the Ernst Abbe Foundation and run by Dr Tom Wahlig and two others.

The aim of the foundation is to support both research in the field of the Familial Spastic spinal paralysis and persons affected including their relatives.

We currently promote 5 projects in FSP research in Europe (Graz, Ulm, Hamburg, Kiel, Jena). Once a year we perform an annual meeting of FSP researchers, who report their projects and compare to international science.

We are in permanent contact to about 200 affected persons and families and to 250 practical neurologists and try to give them current information regarding FSP.

Our homepage http://www.fsp-info.de gives information to both researchers and those affected by FSP.