Poole Myelitis Support Group Minutes of meeting 29th April 2006 Held at St George’s hall, Oakdale, Poole Attendees: Apologies received: The meeting opened at 2pm Teresa welcomed everyone, including 6 new members and their families, and Lew Gray, sec of London TMS. The new members had contacted Teresa, following publication of a short article, giving details of the group and her contact no. the Evening Echo on Sat 8th April. Teresa drew attention to the display board, and asked people to look at it during the tea break. She asked them to take copies of the ‘Friends and Families’ leaflet which had been produced by Angela Dunbar, a member who is about to start up a group in the Reading area. The leaflet has been very well received. It is downloadable from the website and explains simply what it can be like to live with TM – which is often difficult to explain to someone who has no knowledge of it. Some completed questionnaires, (which had been sent out electronically with the reminder for this meeting) had been returned, but Teresa hoped that she would receive more. Hard copies were given to new members at the meeting. Once they are all returned, the Committee will be able to make future plans for the Group. Yvonne is collecting information which she started to collate at the last meeting. She is interested to record where people lived when they were diagnosed. Is there a real glut of people in this area? Or have we moved here? Is there a concentration in a particular postcode area? She is also recording if we feel our condition is improving, reached a plateau or becoming worse. Dr Hillier will be coming to talk at the October meeting (28th) and the suggested questions for him were already very varied. Yvonne has recently attended a similar session with Dr Hillier for MS patients which had been very informative and interesting. The proceeds today from the raffle would be used to cover the hire charge for the Hall and as the Group continues to grow, some thought will have to be given to the income the group is able to generate. Lew explained about Gift Aid which enables us to increase the amount given to the TMS, a registered charity, by the tax being reclaimed. Copies of the Gift Aid form to sign were available. It is also possible to donate on line, including Gift Aid eligibility, on the main TMA website. Lew explained, mainly for new members about the TMA worldwide and the TMS here in the UK. Most people had found out about TM from the internet and registered with the TMA. Their details are then sent to the TMS. With the set up of more support groups, some new members are not actually registered on the website database, but this can easily be done by visiting the tma. org. website or if the person does not have computer access, it can be done for them and they will then receive the New Members Pack, Journal and Newsletter. Lew had a supply of wristbands(£2) for members to buy to raise awareness and provide income for the TMA. Lew also drew our attention to various articles and publications.
There was a general discussion on the names given to people’s illness and there was a general feeling that once the doctors had identified the disease, they felt that their job was done – whereas the name didn’t make a lot of difference to the patient. They had to deal with what it entailed and the name didn’t make any difference to that – apart from the feeling that more was available for patients with a diagnosis of MS. Lew felt that we are relatively fortunate in this area with the support received from consultants, neurophysios and rehab assistants. Other areas have far less expertise, resources and support. Lew told us of links and co-operation between TMS and the MS Society. It is sensible for us to take advantage of their research, facilities and resources as we are closely linked and will ensure we can access as many services as possible. Lorraine asked Lew if he could tell us more about the research which has shown that TM causes clinical depression. He told us more about the link discovered by a psychologist of a raised protein IL.6 level, present in CNS fluid linking both TM and MS (article available in latest copy of journal) Clinical depression is an immediate symptom of TM, and not a result, and should not be ignored, but requires treatment. Some time was spent discussing the format and size of the Journal, Newsletter and new members pack, (Geoff Treglown’s request - Lew to give him feedback) A break was taken for tea and the discussion continued afterwards. The aim is to produce information in enough detail for each individual’s requirements. There is plenty of information for those who want it, but for the sake of cost, and of the environment, the aim is to reduce the amount of paper, printing and postage used unnecessarily.
The new members were asked briefly to tell their stories which were interesting and varied. Gill Rowe had come from Eastleigh. She is continuing to improve and had arranged for private neuro physio which she feels has been very beneficial, when she had been discharged from ordinary physio sessions as unable to do any more for her. Paul Harvey was diagnosed 35years ago as a teenager. He continues to experience many problems. His partner Jane Tomlinson hopes he will be able to attend the next meeting. Jackie Thomas was diagnosed 30 years ago and spent 6 months in Stoke Mandeville. She has not been able to walk since, but has coped with life with the help of her family and friends. Carol Burnett developed TM this year and her left side was affected. It has improved and she is left with problems of odd sensations and sensitivity to hot and cold, and exhausting fatigue. Katie Steadman was diagnosed last year while on her placement year at Uni. She praised the rehab she had received on Portland Wd at Poole. She is making a good recovery and is now working with Carol (very unusual to have two colleagues who have both had TM!) Olga Cowden was a community nurse when she became ill in the 1970’s. She has experienced many problems over the years. She was probably at her best 15 years ago, but since then has deteriorated again. She has had many problems with pain and with continence and eventually an ileostomy was necessary. The raffle was drawn. £50 collected from raffle and teas. Next meeting will be on Sat 29th July at 2pm Meeting closed at 4.35pm.
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