Transverse Myelitis Society
Minutes of 9th Meeting London Support Group 20th May 2006
At Old Board Room, National Hospital for Neurology and Neurosurgery (NHNN), Queen Square, London WC1
Next meeting: Saturday 9th September same venue 130pm
Attendees: Jean Anthony, Johanna Atkins and brother Hans Tagg, Sue Bridge, Neil Edmunds and mother Pat and father Peter, Chris Fordham, Lewis Gray (Secr), Kenneth Matheson, Sally Rodohan (Chair) and husband Sean, Carmel Rodohan, Therese Rodohan, Roy Smith, Val Southorn
Apologies received from: Wilma Atherton, Lisa Border, Teresa Bryant, Piers Bryant, Vera Butler, Christine Checkley, Melvyn Corley (Treasurer), Cynthia Dudas, Margaret Duggan, Angela Dunbar, Karina Garcia-Casil, Carlo Hakopian, Yvonne Kolesar, Sharon Livett, Carol Lodge, Therese Loh, John Nash, Stuart Newton, Leigh Niland, Jack Pennington, Shirley Rozee, Margaret Shearer, Edward Taylor, Jane Thurlow-Buckley, Geoff Treglown
- After a welcome by Sally Rodohan to all attendees, Sally and Lew presented some topics of general interest to all members.
General Charity News
- Lew gave a quick summary of recent news re stem cell transplants to regenerate myelin. The Sunday Times Magazine has published a very interesting article on the first UK transplant operations being done at NHNN starting in September. Colour copies of the article were available on request from Lew lewgray@blueyonder.co.uk Transplants were also being marketed from Holland and Belgium but the MS Society had warned against them, and BBC Radio 4 was running a program ‘The Stem Cell Swindle’ about them.
- John Nash one of our members has taken a new job as Operations & Services Development Manager with the Federation of Disabled People for Brighton & Hove, so any members in Brighton are welcome to contact him at 01273 203016.
- Mel Corley our Treasurer has resigned due to having to go back into hospital, pressures of work etc. A new Treasurer is urgently required. (Following the meeting Jean Anthony volunteered to take on the Treasurer’s role, and handover is now in progress.)
- Sally and Lew and Geoff Treglown requested feedback from members re TMA publications:
- Any comments re TMA Journal? Members requested it should have Table of Contents. No one objected to double-sided or 2-up copying. Kenneth M said he would be happy to receive it electronically but had not been offered. Lew confirmed that this option (No Post) had only been offered to old members (prior to Feb 2006). Johanna A preferred hard copy.
- All members preferred Directory to be UK only, except Chris F who preferred pan-European Directory.
- Members unanimously preferred the new NMP3 option for New Members Pack, ie Dr Kerr textbook chapter plus abstracts only for 3 other non-lay articles.
These comments were broadly in line with other meetings at Poole and Telford. Members suggested that Geoff’s questions re publications could usefully be presented on paper with the next mailing (TMA Newsletter).
- Lew reported briefly from recent Support Group meetings in Telford and Poole. Poole group (3rd meeting) had been publicised in local paper, resulting in several new members. Dr Hillier (neuro) was due to speak at October (5th) meeting. Telford group continued to be well attended but Jan Fox the group leader had announced she and her friend Eve (co-leader) were resigning after next meeting in July and members had been invited to find a replacement. Also, the new Berkshire group held initial meeting in Maidenhead.
- Sally announced that the first TMS fundraising event would be Irish Music Night in Finchley (North London) on Saturday 17th June. (Subsequently the event raised over £1000 for TMS – 100 attendees included 10 members, friends and family and Ken M gave a short speech about TM. A second event will be Medici Choir concert in Westminster on Friday 7th July contact Lew for further info. A third event would be members running in Hydro Active 5k Run in Hyde Park in September and getting sponsors, to benefit TMS.) Also Lew announced that donations could now be made over internet at www.givenow.org.uk or see our home page www.myelitis.org.uk
- The idea of UK TMS Bulletin is still being considered. Angela Dunbar’s idea of a telephone-based support group, for members who can’t travel, has received 3 or 4 expressions of interest and may yet be organised. Members with Devic’s Disease are urged to access www.devic.org.uk and fill in the questionnaire. No progress on distributing our literature to hospitals (except at Poole where Teresa Bryant works in the hospital).
New Members’ Experiences with TM
- Chris Fordham from Sutton got TM only 2 months ago starting with strange tingling. He went for private MRI and was diagnosed quickly, but the clinic told him that ‘steroids would only speed up what happens anyway’ so he didn’t have any. Chris had banding pain and still suffers from problems with his hands. Chris knew about the BSF helpline because his girlfriend suffered from epilepsy and had a brain tumour, so used BSF as his main source of info (and found out about TMS from BSF).
- Johanna Atkins from Hemel Hempstead has two teenage children. Johanna got TM in 2004, was diagnosed after only a week. She still suffers from patchy sensation, takes pregabalin for pain and suffers particularly in the heat (almost all TM and MS sufferers find their symptoms worse in hot weather).
- Sue Bridge has 3 kids and got TM in June 2000. At first meningitis was suspected, but then after 1 week Sue lost use of her legs and left side and was transferred from Kingston Hospital to Atkinson Morley where TM was diagnosed (at T8 level). Sue contracted septicaemia as well. She was treated with 10 days of steroids and very strong antibiotics. Sue still suffers from hyper-sensation in her left leg and discomfort from extremes of hot and cold. She uses acupuncture to help her with fatigue.
- Since our February meeting Neil Edmunds had been ‘in the wars,’ with a disastrous bladder op, 2 hernias and poor sleep due to his drugs.
- £17 was collected for TMA blue wristbands, plus £40 ‘in the hat’ to contribute to meeting cost. See note at top re next meeting 9th September 130pm.
|