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

Next meeting Saturday 12th February 2005 2pm - same location

Attendees: Sally Rodohan with daughters Carmel and Therese, Rachel Bond, Lew Gray, Cindy Morelli, Tony Brohn, Abby Evershed, Yvonne Kolesar,
Roy Smith and daughter Emma Chidwick, Jean Anthony and husband Barrie,
Barbara Houston and husband Barrie

Apologies: Karina Garcia Casil, Ellen Nagle, Angela Hawkins, Mel Corley, Des Rogers, Margery Daubney, David Dance, Chris Elliott, Jenny Fletcher, Tony Irish, Sandra Mitchell, Corrin Tulk, Glen Palfrey, Liz Holmes, Roger and Sally Wilkinson, Christine Checkley, Jack Pennington, Betty Storey, Lorna Cherry, Teresa Dempsey, Carol Lodge, Stuart Newton, Paula Jenkins, Richard Clarke, Mark Harris, Amanda and Mark Harris,
Loretta and Simon Turner, Christine Walls, Vera Butler, Bradley Adams, Mark Gregory,
Leigh Daskalova, Christine Tanner, MRA Darking, Danielle Godbold, Jenny Mullen, Penny Knock, Pam Timberlake, Pauline Hughes, Michael Hutchinson, Peter Butler, Jane Thurlow, Philip Youngs, John Nash, Rowena Macaulay

Part 1. General Topics discussed

(NB comments and feedback received after the meeting are added in italic.)

Status of our members' database(s) and problems contacting members by email - different members had turned up at each meeting from June to December, depending on lists and who was contacted - we were using the TMA database and a combination of email and post. But many members remained difficult to contact. There were still about 40 members in London area who we were unable to contact.

One priority in the new year would be to get Brain&Spine to reword insert which they hand out in their booklet re TM, to mention that there is now a UK TM Society (assuming we get Charity Commission approval - see below). Geoff Treglown knows the author of this booklet (at Institute of Neuro next door).

Was Warren Mitchell (actor) a sufferer with TM? Yes we learned subsequently.

Had there been article in The Times? No it was the Daily Mail.

Sally Wilkinson had previously volunteered to help with publicity. Is there a Spinal Injury magazine?

Possibility to recruit a friendly Consultant Neurologist, to liaise re research in US. Or we might be better to concentrate on a rehab specialist or a "consultant in neurological disability" (suggested by Geoff Treglown) or what might be called a "physiatrist" in US, to focus on symptom management. Can anyone recommend a good contact interested in TM, for us to talk to?

Need to allow for telephone contact from among this group, publish a contact phone number in the Minutes. The following agreed to serve as telephone contact/support: Sally Rodohan Finchley, Yvonne Kolesar Surrey, Jean Anthony Hampton, Lew Gray Brentford.

Our priority should be to reach new sufferers as they were discharged - after-discharge rehabilitation and support was the major problem we had all faced. This would require work by everyone to contact their previous hospitals and rehab centres, to seek cooperation or at least put something on noticeboards.

Speakers who might add value to future meetings (Yvonne's acupuncturist? Lew's physio? Medical speaker? Any further suggestions?).

Anyone receiving the "mobility component" of Disability Living Allowance was automatically eligible for London Taxicard, which provided big discounts using London black cabs via Computer Cab. If you did not get DLA or Attendance Allowance, you could still apply with GP attesting your condition. The contact phone no. is 020 7484 2929.

Part 2. Individual Experiences with TM

Attendees reviewed their individual experiences with TM, which as usual were extremely various. Several people mentioned they had never met another person with TM before! Members who had suffered repeated attacks were especially interested in others' experiences, and many were still suffering from pain and/or apparent relapses and/or fatigue, and also many had issues with employment, social services and NHS physiotherapy.

Abby (1997) was still having problems with spasticity and needed more hydrotherapy. Jean suggested the Richmond Back Pain Group at Teddington Pool - contact details available on request from Jean Anthony. Abby had tried cranial osteopathy which helped initially only, and was also having Botox injections here at NHNN to help with spasticity in her arm. Abby's lesion was C3-C7 and variable.

Yvonne (March 04) had rejected steroid treatment and tried several alternative approaches. Acupuncture had produced best results (more energy). But she was still suffering from banding pain, and the variability of her symptoms was depressing.

Roy Smith (1998) had made a good recovery and suffered only pins and needles.

Rachel (1998 at age 21) was having physio twice a week, still suffered from poor sensation, occasional falls and susceptibility to infection.

Jean Anthony (1995) was still seeing neurologist at Charing Cross, suffered from diabetes too. Jean noted the wide age distribution of the attendees and wondered if there were any patterns. Lew promised to dig up the US TMA survey of 454 sufferers, which appeared in October 2001 TMA Newsletter (p.23). This showed 30-39 and 40-49 as the most common ages at onset - but was unreliable due to size and method of survey.

Cindy had had 3 attacks with different symptoms each time. Her consultant advised her to avoid echinacia and vaccinations, and use primrose oil and vitamin B as if she had MS. Her homeopath treated her like MS, recommended zinc. Following her last attack 1 year ago, the banding pain had reduced to numbness which was reducing at the rate of one inch per month.

Barbara had had very sudden onset (2002), also suffered from lupus (which someone else said Dr Kerr in US had identified as second most frequent cause, where a cause for TM could be identified). Barbara had a second attack one year ago. She had great difficulties with rehab in Christchurch and also with Hampshire Social Services, plus problems keeping her job (teacher) in a wheelchair. Barbara needed ongoing physio and others had several suggestions: Woking Rehab Centre (ask Amanda Harris), Lew's physio or the acpin.net website (Assoc of Physios Interested in Neuro).

Tony's original lesion was at C3. He was worried his walking was deteriorating. Tony was helping with research here at NHNN. His consultant at Kings thought he might have MS, was treating him as MS. At least 3 members of TMA in UK have subsequently been re-diagnosed with MS.

Lew had had TM in 1984 (related to cold sore attack?), with relapse after a week, lung abscess probably side-effect of steroid treatment, eventual partial recovery after 6 months in wheelchair, now resumed physio (private) for last 2 years after ankle fracture, felt he was improving.

Sally originally had TM in 1950's when she was 12, was over a year in hospital, then suffered Optic Neuritis at age 26, then suffered 3rd attack in one arm which was diagnosed as MS and then reversed. Her current difficulty was mainly osteo-arthritis and she took care to avoid citrus.

Part 3. Charity Business

Lew Gray handed out copies of the new 2004 TMA Newsletter (88 pages). Lew mentioned two herbal remedies (Skullcap and Wood Betony) which were mentioned in the new Newsletter (p.47). He hadn't tried them, but his wife had supply of Skullcap if anyone wanted it to try.

Lew was planning to try distributing the Newsletter electronically in .pdf form - if members could receive .pdf by email (needs Acrobat Reader available FOC on the internet), then we might be able to save costs of photocopying and postage which were £3 per Newsletter.

Lew also recommended the streaming video presentations from the August Johns Hopkins TM Symposium, which were now available on the TMA website (required RealPlayer download), for anyone with fast internet connection. DVDs of the symposium were also available, Lew has tested and they do work on UK DVD player.

Lew presented the key points of the proposed Constitution including the TMS charity's objectives, open membership and timing of meetings. The meeting agreed to adopt the Constitution.

Further volunteers were sought to join the Executive Committee - Yvonne, Jean, Tony and Carmel volunteered. Since 3 other prospective members of the Committee had been unable to attend this meeting, it was agreed that all would attend a committee meeting in January (not in Central London to save money) to finalise their terms of office, allocate work etc. The Committee would then stand for election by the general membership at the first Annual General Meeting in February, at the same NHNN venue.

The TMS bank account would be opened by January, since Loretta the Treasurer was too busy to set it up before Xmas due to caring for her TM child. In the meantime Sally was responsible for the charity's assets which now amounted to £100 after passing the hat for £80. Lew would make a donation on behalf of TMS to NHNN, for the use of the Old Board Room. Lew's and Karina's and Sally's employers had already indicated their willingness to match employee contributions and other fund raising. Lew's company had also indicated willingness to continue to support the Newsletter distribution (although US TMA was also still expecting to pay as well).

A temporary Executive Committee was required to sign the Constitution and the Declaration by Charity Trustees. Lew distributed copies of the Charity Commission booklet Responsibilities of Charity Trustees and explained the essentials. Jean and Tony agreed to join Lew and Sally on the temporary Committee, to sign the Constitution and the Declaration.

Next meeting: First Annual General Meeting 2pm Saturday 12th February at National Hospital for Neurology and Neurosurgery, Queen Square London WC1.