Transverse Myelitis Society

Minutes of 1^st Annual General Meeting

(and 4^th Meeting of London Support Group)

12^th February 2005

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

Attendees: Jean Anthony, Wilma Atherton and husband John, Clare Blake and husband Chris (and infant Henry), Tony Brohn, Richard Clarke, Wendy Coleman, Leigh Daskalova, Bayard Ficht and wife Aphrodite Gonou, Margaret Duggan and husband Doug, Karina Garcia-Casil, Lew Gray (Secr), Barbara Houston and husband Barry, Yvonne Kolesar, Sally Rodohan (Chair), Carmel Rodohan, Therese Rodohan, Roy Smith, Susanna van Langenberg

Apologies received from: June Adderley, Catherine Auburn, Lisa Border, Peter Butler, Lorna Cherry, Mel Corley (Treasurer), Abby Evershed, Mark Gregory, Amanda Harris, Mark Harris, Angela Hawkins, Felicity Hayward, Peter Hider, Pauline Hughes, Michael Hutchinson, Carol Lodge, Rowena Macauley, Margaret Moran, Cindy Morelli, Yvonne Parfett, Jack Pennington, Margaret Shearer, Jane Thurlow, Geoff Treglown, Simon Turner, Loretta Turner, Sally Wilkinson

General Meeting to set up UK registered charity

1. After a welcome by Sally Rodohan to all attendees, the following members were elected to the Executive Committee by the meeting, replacing the interim Committee who signed the Constitution and Charity Commission Application for Registration in December:

Sally Rodohan (Chair) for 2 year term

Lew Gray (Secr) for 3 year term

Mel Corley (Treasurer) for 1 year term

Karina Garcia-Casil for 2 year term

Jean Anthony for 3 year term

Yvonne Kolesar for 3 year term

Tony Brohn for 2 year term

Simon Turner for 1 year term

All Executive Committee members were familiarised with the responsibilities of charity trustees and signed declarations (except Mel and Simon who were absent and would sign later). In addition the Committee voted to co-opt Carmel and Therese Rodohan as Committee Members and they too signed declarations.

2. Lew presented the key points of the Constitution which had been adopted at the December meeting and explained the Resolution to amend the Constitution (the Charity’s Objects etc). The meeting voted to approve the Resolution.

London Support Group Meeting

3. Margaret Shearer of Scotland Support Group recommended St John’s Wort (herbal) macerated oil for banding pain, and was happy to talk on phone (once she returned from Florida) with anyone who was interested. Lew promised to send Margaret S’s details to Margaret D.

4. Margaret Moran in Lincs mentioned magnetic therapy and acupuncture helped with her pain. Wilma agreed magnetic therapy worked for her too, but not acupuncture which had made her worse. No others could recommend magnets from experience. Lew was still trying to get more detail from Margaret Moran.

5. Yvonne K thought acupuncture had helped her enormously, not primarily for pain relief but to increase her energy level and help fight fatigue and depression. Whereas homeopathy had not helped Yvonne at all.

6. Bayard F was experimenting with bio-resonance which was reducing his fatigue somewhat, but it was too early to tell if it would help otherwise or in longer term. He had also tried osteopathy and kinesiology with no result.

7. Susanne van L had tried chiropracty which helped her somewhat, but Margaret Duggan said it hadn’t helped her.

8. On the other hand Margaret D said cranial osteopathy (from her acupuncturist - 2 sessions per week for 1 year) had been the only remedy that stopped severe spasms, that used to bounce her out of her wheelchair. Margaret and her acupuncturist also used a strange technique called “pumping” from US, that had actually helped her with bladder.

9. Leigh D had benefited from cranial-sacral therapy (she originally contracted TM in US).

10. Confusion continued to reign re advisability of flu jabs for TM sufferers with conflicting advice from doctors. Lew mentioned that one Scottish member thought he contracted TM as direct result of  hepatitis vaccination, which was now compulsory for workers in NHS!

Members’ Experiences with TM

11. New members (8) attending for the first time reviewed their experiences with TM and there was general discussion, comments and suggestions. As at previous meetings, most new members have never previously met anyone else with TM, and everyone was delighted to be able to discuss their experiences with fellow sufferers.

12. Wilma’s first TM 2 years ago had slow onset, resulted in 4 months in hospital. Then Wilma became pregnant and now has a lively 9-month daughter. Five months later in October, Wilma suffered 2^nd TM. She suspected the original TM might be associated with Repetitive Strain Injury from her job. She combated depression with breathing exercises and meditation. Magnets had helped. Wilma was still in Wellington Hospital for rehab, hoped to be discharged at end of February.

13. Richard C had TM 18 months ago, now had recovered pretty well with residual coldness in left leg only, some sensation and pain problems (‘gravel rash’), was able to do his (outdoor, active) job again. He thought he might look further into acupuncture.

14. Clare B had got TM when 6 months pregnant, but Henry had been born fine! After 6 months at Wolfson Rehab her recovery had plateau’d. Acupuncture had only temporary effect for her.

15. Bayard F had very slow onset 3 ½ years ago, became very listless, had a year off work, suffered from fatigue, cognitive problems and depression. When TM was diagnosed he thought that was it, only to discover that diagnosis alone didn’t help much at all!

16. Susanna van L had recovered somewhat from tingling and numbness, but feared her muscle strength was getting worse and she had frequent falls (balance?). She was worried she wasn’t getting correct advice from doctors.

17. Margaret D got TM 7+ years ago. Her initial attack was followed by much worse 2^nd attack after 3 weeks (Lew G had similar experience of ‘relapse’ after steroids were reduced quickly). Margaret ended up 12 months in hospital, still suffers from severe pain on one side (allergic to drugs), does physio, hydro.

18. Wendy C was a disabled assessor for Winchester Council when she contracted TM (sudden onset) in 1992. Wendy can walk (and sky dive) but still had lots of problems and mixed sensation – but she wasn’t letting it slow her down! Swimming helped a lot.

19. Leigh D had contracted TM in USA (New Hampshire) 8 years ago, had recovered pretty well following massive doses of steroids and cranial-sacral therapy.  

20. Further to the last meeting, Barbara Houston said she had found a specialist neuro physio via the ACPIN.net link on the internet, and she was very delighted with progress already and very hopeful for the future. The recommended physio was based in Lymington.

21. Karina updated the meeting on her daughter Zoe’s surgery in January.

22. Abby Evershed had emailed Lew with details of a website ownersdirect.co.uk where she had been able to find disabled-friendly holiday accommodation, even including private pool with hoist. (But Geoff Treglown was only able to find 2 wheelchair-friendly places in England.)

Ideas and Plans for Future of TMS and London Support Group

23. Sally reported that Simon Turner had volunteered to join the Committee and coordinate fundraising for TMS. Karina also confirmed that her employer was prepared to provide financial support for TMS meetings as soon as registration was achieved (received 19^th – no.1108179!). 3 people had volunteered to sponsor TMS via running the London Marathon in April and were asking for the registered charity number. Lew responded that registration should be complete in a few days and in any case by the end of February. Donations from members were trickling in by post (5 so far). Over 70 members had requested to receive Newsletter electronically which saved over £200.

24. Further to last meeting, the Warren Mitchell (TM sufferer) article in Daily Mail had been found and copies were available, along with another article which appeared in The Independent in January (found by Susanna). Clare B worked for a magazine publisher, and thought Woman magazine might be interested in a TM story.  

25. The idea of promoting knowledge of TM to NHS PALs was discussed (visits to sufferers? Leaflet to design?), along with the imminent publication of the NHS National Service Framework (Information Standard) for people with long-term neurological conditions – The Brain & Spine Foundation was seeking views and feedback and TMS should comment. Brain & Spine TM Booklet insert still needed correcting too.

26. Lew explained that 15 DVDs were available from the August 2004 US seminar at Johns Hopkins, which contained state of the art updates on TM research. DVDs only cost $8 each plus $8 for shipping (up to 6). Members should have received a DVD Order Form with their Newsletters. Lew had brought sample DVDs to the meeting, and these would be available to play on Tony’s TV/DVD at the end of the meeting, for members who wished to sample them. Lew particularly recommended the Summary of Research presentations on DVDs 10 and 14.

Next Meeting

27. The next AGM for the TMS was not until 2006, but there would be another meeting of the London Support Group on 14^th May at same venue (NHNN). Members agreed that the Committee should try to organise a speaker for the next meeting.