November 2002 Newsletter

Well the festive season is almost upon us. I must confess (no I haven’t sinned) to absolutely adoring Christmas panto’s, and acting like a child at heart (however, it does help when you take your own!). Music & the Arts for me over the past few years have proven invaluable, in providing me with many highly enjoyable times as well as introducing me to many new friends & acquaintances. In fact I’d go so far as to say that my love of music & the arts has helped sustain me when dealing with my experiences of FSP, playing a positive part in my sanity and subsequent good health. For now with care, Sharon.

Whilst we are on the subject of entertainment. Ian (Smith) wrote to me with an article for the newsletter titled “Bottoms Up”. This bizarre quote, although not clear & coherent will not be immediately apparent as yet! However, if you read on you might happen to be amused. As it happens, I am informed the concert arena at Wembley have a reasonable amount of space for wheelchairs, & also accessibility for the “walking wounded” adjacent to one of the wheelchair bays & quite near to the stage. Ian encompassed that although it is clear that disabled people do not have an automatic right to discounts at concerts or other venues, he felt inspired to write to Wembley Arena suggesting that it was probably unreasonable to only offer a discount to those accompanying wheelchair users, as, for example, a blind person who might possibly need even more help. As a result of his diligence the Arena now offers discounts to those accompanying other disabled patrons at least in the “walking wounded section”. The disabled box office can be contacted on the following number (0208 902 9141) during box office hours. Ian advises me that him and Lorraine are making the most of the arena & have recently seen a number of concerts including Gabriel, Roger Waters (from Pink Floyd), Rod Stewart, and guess where the punch line “Bottoms up” comes in? They also went to see Kylie Minogue! (who’s he trying to convince eh?).

On a much lighter note, I am sure you will all join me in congratulating Ian & Lorraine on the birth of baby Sebastian earlier this year, best wishes to you both.

Stephanie Pengelly (help line) & John got engaged this month on a weekend moonlit river cruise in the idyllic city of Paris. Congratulations & best wishes to you both for the future. Is it time to buy a hat?

I would also like to say (due to personal circumstances) “welcome back Mike” it’s good to have you back on board. Mike unfortunately, is car less at the moment, due to D.V.L.A. regulations, but has recently & independently taken a break in the Lake District, stopping in the picturesque Ambleside area. Mike had a lovely holiday (& good on him he deserves it). However, the point Mike really wanted to emphasise is that it is possible for us all to attain through researching & contacting the tourist information bureau to become thoroughly acquainted with what is available and attainable. Mike had a great time, he cruised the length of Lake Windermere, entertained a whole day tour in a minibus from Ullswater to Westwater, where Wordsworth and Beatrice Potter resided & had a thoroughly good time. The only point of difficulty encountered was via the train journey on the way back to Skipton where he had to necessitate crossing a long bridge in 10 minutes flat for which he should have booked some wheelchair assistance! However, it is important to recognise that British Rail are geared up to give assistance if needed.

A big thank you goes out to Rachel Collins, who due to family demands has had to go on a back burner. Rachel has put in valuable time as area 3 co-ordinator, which is very much appreciated, & once again I’m sure you will all join me in wishing the family all the best. N.B. our thanks go out to Stephanie Pengelly for taking over the continuity of area 3 at the present time.

And before I go into emphasising how I would like to make the quarterly newsletter as informative & innovative as possible for all our members male & female, I would like to say a big thank you to my fellow committee members & yourselves for your support, encouragement, values & visions which make the FSP Support Group unique!

We’re in the money

We are currently in the fortunate position of having funds available to support our members. This might be of use to members who wish to organise local activities or incur expenses on behalf of the group. General expense claims should be submitted to our treasurer Mike Fawcett.

Perhaps more importantly, we are able to consider grants to members who have difficulty in covering one off expenses related to their FSP. We feel that it is vital to help our members in the challenges imposed by FSP so please do not put off that expense if you think we may be able to help. Please contact a member of the committee to discuss any issues. All requests will be treated in confidence.

On a respectful note, I would like to express my heartfelt thanks to my fellow committee member, Pearcey, who produced and edited the August Newsletter on my behalf. I think between us we have now finally come up trumps in building what I hope will be a newsletter with an added bonus for our members. As David emphasises there must be many people out there, coping with FSP or likely to confront it without knowledge of us & who would benefit from the friendship, support that we have all experienced within the Group.

AGM & Conference – Leicester – Saturday 14th September 2002

Firstly, let me thank each and all of you for taking the time & making the effort to come to our 2002 Annual General Meeting at the Snibston Discovery Park in Leicester, & a big welcome to our 10 first time attendees. Many of you would have had to travel a fair distance, and also find accommodation locally. I must emphasise how your personal involvement & participation was very much appreciated. I’m sorry for the rest of you who could not make it. However, I want to accentuate how it highlights your support for the committee and the commitment members have towards the group and we are extremely indebted to you all.

On a personal level, I must say how extremely proud myself, my husband (Kevin) & my son (Ashley) were, after only being a part of the Group since August 1999, to have been in the position of meeting so many of you, (new friends and old) & getting such a warm welcome, “thank you all”!

The day was introduced by David, who undertook the formal A.G.M. functions which resulted, fundamentally, in the current committee (& additionally myself) being retained, and the accounts being approved. The committee members then introduced themselves & outlined their activities. David then went on to discuss & outline the importance of research into Familial Spastic Paraplegia, which will undoubtedly increase group awareness, which I will go into in more detail forthwith.

David also emphasised (he can “chatter on” can’t he) the importance, involvement & enthusiasm of our area co-ordinators, & how without them the group would not grow & flourish as it has. There are some “co-ordinator roles” still open & as the membership expands it would be nice to see these taken up. Another issue that was fore mentioned, & equally meaningful was the whole kit kat & caboodle of the acquisition of Charity status for our group & the need for increased committee members so; “volunteers join the queue”.

Presentations

Gita Ramdharry, a neuro-physiotherapist

Gita is based at the National Hospital in London, & portrayed during her presentation the role of being a physiotherapist as a symptom manager, who, whilst being unable to stop the disease, can monitor people to troubleshoot problems before they occur. Gita discussed how the muscle groups operated together and how lack of use can cause muscle wastage. She also amplified that spasms, stiffness, heightened reflexes & muscle weakness were features of FSP & that an arched back was a common form of compensation for the tightened muscles.

Gita also explained that a holistic approach to intervention should be adopted with sufferers “being assessed on an individual basis” to develop a range of exercises to stretch and strengthen muscles. She then went on to point out that an orthotic assessment could also be undertaken & aids provided to realign the foot and ankle. Your physiotherapy team would be best able to advise you on the management of your day to day activities, including exercise routines, pain relief and balance.

Undergraduate research into Familial Spastic Paraplegia

Andrew, Camilla, Marcus & Andrew are final year Bsc hons physiotherapy students from the University of East London. They were kind enough to give us their time to talk about why their specific test for measuring balance is important for FSP. They were looking for volunteers with FSP to take part in completing a series of “simple” balance tests. To date, little physiotherapy research has taken place with regard to FSP. Physiotherapists, need a way to accurately assess whether a given physiotherapeutic treatment has been effective or not & to determine which treatments are more effective than others. This research will then hopefully determine the suitability of this “reach test” for use specifically for those with FSP, as an objective way to measure the effectiveness of physiotherapy.

I am advised that they are still looking for volunteers. It will take place at the university and will take a maximum of two hours (if you don’t get lost like we did on the London circular). 6 hours later we arrived and had done a complete tour of the monopoly board; Big Ben, Houses of Parliament, Tower Bridge, you name it we saw it. Mind you, when we got there we received a warm welcome, cup of tea and biscuits. A donation towards travel costs of £10 is also available. All personal details and data collected is strictly confidential & all test results will remain anonymous. They are a great bunch, & if you are interested you can contact me & I will pass the information on to them.

Professor Raeburn – Life/Travel Insurance

Unfortunately I have not yet had the pleasure of speaking with Professor Raeburn with regard to these issues, but wish to thank him if he hasn’t already received our acknowledgement for taking the time to attend the AGM. I anticipate producing an article surrounding these issues in the following newsletter.

Dr McDermott – Genetics

Dr McDermott advised us as part of his presentation that researchers in America have discovered a further gene associated with dominant FSP. To be consistent with the other FSP Gene names, spastin and paraplegin, and the effort put in by the US group, the new gene is named Atlastin. He also went on to point out that almost half of HSP/FSP is caused by the spastin gene, and is the starting point for diagnostic testing. Stemcell research was also discussed, but as we now have 7 known genes in HSP/FSP & 11 unknown, is it going to give us an answer to the progression of this muscle wasting degenerating process?

Jim Rawlings, Disabled Drivers Association

Jim was very informative (in between his jokes) & discussed a range of long established arrangements with regard to access issues, fund raising, road shows, competitions & other concessions that may be available to yourselves. Jim also went on to point out that a small team of hard working staff provide an information service to both members and groups alike.

There is a publication titled “The Magic Carpet” on a quarterly basis. This provides a valuable source of information on current activities and issues. Other publications include “The Road to Mobility” & “Sorry I’m Late Again”. Various leaflets are available if requested.

Full membership is given to people (drivers & non drivers) with a disability which effects their mobility. If you are interested in joining them please contact the DDA at the National Headquarters, Ashwellthorpe, Norwich, NR16 1EX.