May 2002 Newsletter

I have some personal good news to share with the group, which is that Lorraine and I are expecting a baby in July. As a consequence, I am going to find it very difficult to edit our newsletter whilst being fully employed.

I would therefore like to hear from anybody who could take on the role. I will be happy to assist any new incumbent in terms of submitting articles and offering guidance on the approach that I hope has served our group well over the three years I have been editor.

These changes can be good for all of us as it can lead to new thoughts being applied to old processes with potentially exciting consequences. If there are no volunteers it is likely that I will need to scale back on the quality of the newsletter, which will be disappointing for me, and, I think, our group.

In any event I am determined to continue to support our group In these exciting times, perhaps building on some of the other activities I am currently involved in which are described elsewhere in this edition.

Congratulations to Justine & Immanuel

Group member Immanuel Greenfeld and Justine married at the Hilton hotel in Tel Aviv, Israel, on the 11th March 2002.

Flying Scholarship

If you have ever had the dream of learning to fly but have been deterred by the cost, there might be the chance to apply through the Royal International Air Tattoo flying Scholarships for the Disabled.

There is a rigorous selection process and only those aged over 17 with a serious ambition to learn to fly should consider applying. If you would like more information on these scholarships, where applications are currently being taken for next year, you should contact Martin Abbott on 01453 833481 or write to him at 1 Old Hill, Avening, Tetbury, Gloustershire GL8 8NR.

Bowen Technique

Eileen Mc Carrick writes

I am married with three children, Kathleen 8, Thomas 7 and Olivia 3. Both Kathleen and myself suffer from FSP. Kathleen was diagnosed about 18 months and when she had growth spurts her walking got worse, on her toes with knees touching and a swinging gait. Her balance also suffered and she fell over frequently.

Our health visitor gave us a telephone number and the name of a man who had an alternative possible therapy for our condition. His name was Howard Plummer and it is called the Bowen Technique. It is a hands-on holistic therapy which involves a series of non-invasive gentle moves over muscle and connective tissues with periods of rest. It is unlike any other form of hands-on therapy with no pulling or cracking of joints and no manipulation. The treatment is generally a pleasant and relaxing experience.

At the same time Kathleen and I took up Viniyoga yoga working on balance, breathing and coordination. After a few weeks, when I took Kathleen swimming, she walked the length of the pool with her heel down and moving onto her toes perfectly. I could not believe what I was seeing and was clearly very excited.

I am not sure which of these two approaches might be having the desired effect but I hope that this information might be of use to other members of our group.

Further information on the Bowen Technique can be obtained by telephone on 01373 461873 or at their website: www.thebowentechnique.com.

Editor note. In undertaking any therapy for FSP it is vital to ensure that the therapist fully understands the nature of the condition before treatment starts to reduce the risk of unnecessary damage being caused.

Hot Review

Rachael Collins writes

After reading about the warm front grant under the Home Energy Efficiency Scheme in the February 2002 newsletter, I decided I would apply. I phoned the number supplied and answered a few simple questions over the telephone regarding Disabled Living Allowance and was told that I would be contacted shortly by a representative to assess my insulating needs.

The local assessor came round within a week. He was very polite and answered all our questions and also left us with some low energy light bulbs. Approximately two weeks later the work was carried out, with no disruption to ourselves, by a polite and efficient engineer.

I was very impressed by their manner and work for which I wasn't required to pay a penny. I would recommend anybody who thinks that they may be eligible to apply.

Where appropriate, the leaflet, including application form, is enclosed with this newsletter.

Disabled Driving Instructors

If you need a Driving Instructor for the disabled you can get a copy of their register, free of charge. Send a self-addressed A4 envelope with a 66p stamp to:

Mobility Centre, Queen Elizabeth's Foundation, Damson Way, Fountain Drive, Carshalton, Surrey, SM5 4NR. Or e-mail them at This email address is being protected from spambots. You need JavaScript enabled to view it..

Area Coordinator

We are pleased to welcome Rachael Collins as coordinator in Area 3. Rachael has in mind a number of ways that she might be able to help the group in the future and is already enbarking on a car boot sale to raise funds for the group.

Families with Children

Sharon Graddidge, in Area 1, will be hosting our first meeting for families with young children on July 20th. Sharon can be contacted on 02380 619391.

Life Assurance Challenge

Ian Smith writes

I recently learnt that the life assurance industry apply significant increases to life assurance premiums and, for certain types of policy, sometimes decline to offer any cover at all where the applicant suffers from FSP.

Such adjustments are usually applied where there is a higher chance of early death. It is not clear to me that evidence will support this, particularly in the case of the pure form of FSP with no complications that could affect life expectancy.

I work in the industry and am endeavouring to have the position reviewed. I am in contact with various bodies, including the Association of British Insurers, and will be attending a conference later in the month where the industry approach to assessing rare conditions (such as FSP) will be discussed.

I will report my findings as they develop.