Transverse Myelitis Society

Minutes of 12^th Meeting London Support Group 10^th March 2007

At Old Board Room, National Hospital for Neurology and Neurosurgery (NHNN), Queen Square, London WC1

Next meeting: Saturday 9^th June same venue 130pm – NB date not as discussed

Attendees: Jean Anthony and Barry, Wilma Atherton, Piers Bryant and Helen, Marion Darville, Lewis Gray (Secr) lewgray@blueyonder.co.uk Yvonne Kolesar, Linda Lee, Cathy Mayer and Ann, Peter Payne, Sally Rodohan (Chair) sp.rodohan@btinternet.com Carmel Rodohan, Therese Rodohan, Rob Stevens and Jane

Apologies received from: Eileen Anderson, Janet Ashenden, Hilary Barefoot, Mike and Jane Batho, Farshideh Bondarenko, Teresa Bryant, Vera Butler, Martin Bye, Suzanne Carr, Christine Checkley, Lorna Cherry, Sheila Demery, Jodie Douglas, Sally Dray, Margaret Duggan, Neil, Pat and Peter Edmunds, Karina Garcia-Casil, Maureen Hodgkinson, Michael Hutchinson, Carol Lodge, Ken Matheson, Cindy Morelli, Leigh Niland, Jack Pennington, Susan Pugh, Gill Rice, Patricia Rowe, Shirley Rozee, Carola Schachtschabel, Margaret Shearer, Roy Smith, Martin Stanley, Edward Taylor, Jane Thurlow-Buckley, Geoff Treglown, Loretta Turner, Daniel Wieder, Sally Wilkinson, David Williams, Dave Wolff

TM Society Annual General Meeting

1. After a welcome by Sally Rodohan to all attendees, Sally presented a short summary of the TMS’s activities and achievements in 2006. The London, Poole, Scotland and Telford Support Groups were well established and new groups were getting started in Berkshire, Southwest, Manchester and East Midlands. We had achieved our objective of improving fundraising; in addition many members had switched from receiving TMA publications by post to email, which had reduced our expenses markedly. There were 85 new members in 2006.

2. In 2007 we planned to continue forming and supporting new Support Groups. We would continue to raise awareness of TM. Our biggest effort would go into holding the 1^st ever UK TM Conference in October.

3. Many thanks were due to all the Committee members, and also to Geoff Treglown (new members packs), Margaret Shearer (Scotland Group), Teresa Bryant and Barbara Houston (Poole Group), Anna Paulsson-Habegger and Kelvin Holmes (took over from Jan Fox who led the Telford Group for 10 years).

4. Rob Reeves (Southwest Support Group) and Angela Dunbar (Berkshire Support Group) were nominated and elected to join the Committee for a three-year term. Sally Rodohan and Karina Garcia-Casil stepped down by rotation and were re-elected to the Committee for three years. Additional positions on the Committee were still open if any member was interested to join.

5. Lew Gray gave a brief Secretary’s report. Lew wanted to acknowledge the contribution made by Sally and her daughters, to kick-start our fundraising (Irish Night £1100) and also all the hard work to distribute TMA Journal and 2 Newsletters, plus enlisting their employer’s financial support, so we could save our money for the 2007 Conference. Yvonne Kolesar had catered for all our London meetings, and also initiated a new policy of regularly telephoning and welcoming new members to TMS. Jean Anthony had taken over the Treasurer role in the middle of the year and done a fantastic job.

6. Jean Anthony presented the 2007 Accounts. Due to members’ accepting publications by email, our expenses for posting them had been less than £2000. Sally’s employer AP Info Ltd had kindly paid most of the expenses, making a donation in kind over £1200. Combined with £2200 fundraising, this had generated a healthy surplus and we now had over £7000 in the bank, which would be used for the 2007 Conference. Jean wanted to especially thank Liz Holmes, Julie Johnson and Amy Douglas who organised fundraising events on our behalf in 2006.

7. Following tea break (excellent food provided by Yvonne), the 12^th meeting of the London/Southeast Support Group took place.

London/SE Support Group Meeting – Members’ Experiences with TM

8. Marion Darville told us about her son’s experience with TM. He is 38 and currently living alone in Cambridge. After 3 weeks of flu-like symptoms he was diagnosed at Addenbrookes in November 2004, where he had 3 days IV steroids. After 6 months he could walk 50 metres, and he continued to have physio for 12 months but recovery has stopped and he hasn’t been able to return to work. Marion mentioned an anti-inflammatory (anti-edema?) remedy named serrapeptase, but no one knew about this remedy (mostly used in Japan and Europe, from silkworm larvae it says on the internet). Lew promised to send a copy of Piers’ exercise programme to Marion in the post.

9. Robin Stevens (68) had got TM overnight and was admitted through A&E in Basingstoke, then referred to neuro in Southampton and treated with IV steroids. After 13 days in hospital he was released and treated by Community Rehab physio. He continued to suffer from fatigue – this led to brief discussion of Christine Clamp’s email and Dr Joanne Lynn’s comment on fatigue from the TMA website (in About TM - Frequently Asked Questions no.11 http://www.myelitis.org/faqs.htm#11 ). Rob was very lucky his wife Jane was a senior physio and she had quit work to look after him.

10. Peter Payne said he was still making slow but steady progress and could now walk 300-400 yards. He was continuing with his physio and exercise programme, requested a copy of Piers’ exercise programme by email.

11. Cathy Mayer was back at work and had learned to live with TM. But she was still very troubled by pain – magnets didn’t work for her like they had for Wilma. Yvonne had had good experience with acupuncture - Jane Stevens recommended the Acupuncture Association of Chartered Physios www.aacup.uk.com  Cathy said she was taking a drug named cloazeprine (sp?). Lew recommended Cathy get in touch with Annie Schofield in Tunbridge Wells. Cathy was also interested in the new botox treatment for bladder and promised to feed back info after her upcoming appointment at Queen Square in April.

12. Yvonne Kolesar had TM 3 years ago. She had a dose of flu with fever a few weeks ago, which caused a relapse/return of her TM symptoms including banding pain. She just wanted to mention it could happen, in case it happens to someone else.

13. Linda Lee got TM at age 10, 50 years ago – although she never realised that was what it was. Linda is having a hard time with arthritis pain and is considering a knee replacement like Sally’s operation 6 months ago. She is struggling to lose weight. There was a discussion about exercise programmes, and Piers suggested Linda might try aqua-aerobics which would take some weight off her painful knees.

14. £30 was collected ‘in the hat’ to contribute to meeting cost. See note at top re next meeting Saturday 9^th June 130pm. (NOT 2^nd June as discussed, but 9^TH June instead.)