Transverse Myelitis Support Group

Minutes of meeting 28th January 2006 2pm - Held at St George’s Church Hall, Oakdale, Poole

Attendees:
Frank Devine, Lorraine Exley, Linda Graham, Claire Graham, Barbara Houston, Barrie Houston, Sue Hyatt, Connie King, Phil King, Malcolm Plested, Mary Plested,  
Peter Poll, Barbara Sadler, Yvonne Trapp, Graham Ward, June Ward
John Withey, Rita Withey, Robin Young, Valerie Young

Apologies received:
Teresa Bryant, Louise Higgs, Esme and Jennifer Fletcher, Wendy and Ian Bruce, Malcolm and Linda Stanley

After welcoming everyone, Frank told the group about the committee meeting which had been held, and asked for any comments.

Members were keen about the guest speakers, and would have some questions for Dr Hillier.

Malcolm began a discussion by querying about VAT exemption when converting a window to a door. Various members offered their suggestions, ranging from the builder applying for exemption through to the customer contacting a range of authorities. Discussion also ensued regarding grants.

It was agreed that more information leaflets will be required, so that members can give them to local GPs.

It was pointed out that Gift Aid forms were available so that tax could be reclaimed on donations from tax payers.

There then followed a discussion regarding different consultants, which led to members giving a brief overview of their history. A general trend emerged regarding sympathetic consultants, as opposed to those who were of very little help. Most members felt that Dr Ellis in particular had been of no help at all, whereas Dr Hillier seemed particularly good. Dr Burn was also praised. An interesting idea was then explored regarding Vitamin B. It would appear that several members had been found to be deficient in this vitamin. Another idea discussed was whether a local chemical factory could be a related cause for TM.
Treatments were also discussed. There is a neuro gym at Poole, which some members have used to their benefit. Several members were interested in this, and it was suggested that GPs might be able to refer patients.
Some members had found acupuncture to be beneficial, and homeopathy was also reviewed.
Gabapentin was discussed, with many members finding it helpful, but with caution regarding dosage/addictiveness. Baclofen is being used by some members for muscle spasms.
There is a mixture of attitudes regarding GPs. Some members believed their GPs to be sympathetic, and keen to understand the condition, whilst others left it to the patients to gain their own knowledge.

It was agreed that the next meeting be held at the same venue and time, Saturday 29th April 2006

After a successful raffle, the meeting closed at 4.00pm