Transverse Myelitis Society
Minutes of 24th Meeting London Support Group 16th January 2010
At EC Harris HQ, 34 York Way, Kings Cross London N1 9AB
Attendees: Jean Anthony (Treas), Barbara Babcock, Farshideh Bondarenko, Ann Goddard, Terry Godwin and friend, Lew Gray (Secr), Yvonne Kolesar (Chair) and Simon, Therese Loh, Susan Lucas-Upson and Paul, Jo Milne and mum, Rob Reeves, Sally Rodohan (Pres) and Sean, Jayne and Paul Rose, Janette Skillen
Apologies received from: Wilma Atherton, Hilary Barefoot, Marion Darville, Sally Dray, Margaret Duggan, Angela Dunbar, Ros Gallagher, Nick Heal, Michael Hutchinson, Peter Jones, Jacqui Manning, Ken Matheson, Peter Payne, Malcolm Penn, Samantha Rowe, Milisa Savic, Yasmin Sheikh, Martin and Linda Stanley, Edward Taylor, Jackie Turberville, Loretta Turner, Joanne Vine, Caroline Williamson
News and Announcements
- Doug Kerr has left Johns Hopkins and is moving to a pharma company called Biogen in Cambridge Mass. Doug says he will continue to treat his patients at Mass General Hospital, and will stay involved with TMA. He also says he is happy to come to London and speak if we organise another Conference.
- TMA has announced our 2010 Symposium which will be 23-26 September in Dallas Texas, organised by Dr Ben Greenberg previously Doug’s right hand colleague, who has now moved to University of Texas Southern which is in Dallas.
- 58 members have volunteered to help Amy Edwards at Liverpool University with her research project into TM and fatigue. If you received a questionnaire from Amy and you still haven’t filled it out and returned it, please do it now!
- TM Society AGM will be on 17th April, immediately preceding our next London Support Group meeting.
Speaker: Farshideh Bondarenko re Neuro-Rehabilitation
- Farshideh had a good set of slides which I am going to post on our website. In addition to reviewing how she assesses TM patients, Farshideh also talked about the importance of the language we use for motor planning, and to foster a ‘positive mental attitude’ generally (see slides). Sometimes patients are unconscious of where their eyes are pointing and gestures, which are very significant in influencing correct movement. For example for proper balance DON’T LOOK DOWN.
- After seeing many TMers, Farshideh has concluded that sensory deficit is the main problem in TM, since it subtly interferes with proper feedback to the brain to guide motor planning. Many TMers move from incorrect starting positions for example and incorrect compensatory movement is very common.
- Following Farshideh’s talk, discussion and questions, we broke for tea and lovely cakes from Yvonne. Then we moved back into ‘bucket seats’ for our usual chat about everyone and everything.
Members’ Stories and Updates
- Jan Skillen is still trying to get back to work since getting TM last July. One of her employers has been fine but the other less cooperative.
- Jayne Rose is also negotiating to get back to work (NHS Administrator).
- Ann Goddard said she was feeling electric shock-like pain in her leg.
- Sue Lucas-Upson said she was much better since last meeting.
- Rob Reeves had managed to get GP to give him exercise on prescription at a gym and he was definitely improving with it.
- Jean Anthony and Sally Rodohan said they were much the same.
- Jo Milne is a schoolteacher and a climber. She got TM after a rabies vaccination she had in preparation for a charity drive to Mongolia. She had 6 weeks of tingling and banding pain which caused breathing problems, thirst, inability to move and spasms which interrupted sleep. Unfortunately even an urgent appointment with a neurologist had a 10-week wait. She went to hospital 3 times in North London and then Kent. She still finds herself jerking backward and suffers from stabbing pain and fatigue. But there are some good days and she has found Nintendo WII game works for her.
- Barbara Babcock gave an update: she still wakes up with 3 fingers burning, has numb patches and feels rundown most of the time.
- Next meeting will be Saturday 17th April 2pm at ECHQ. Other meetings for 2010 will be 24th July and 23rd October – but check on website in case dates change later http://www.myelitis.org.uk/London/index.htm
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