Transverse Myelitis Society

Minutes of 8th Meeting London Support Group 18th February 2006

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

Next meeting: Saturday 20th May same venue 130pm (NB start time)

Attendees: Jean Anthony, Piers Bryant and Helen, Angela Dunbar, Neil Edmunds and mother Pat and father Peter, Lewis Gray (Secr), Yvonne Kolesar, Carol Lodge, Kenneth Matheson, Sally Rodohan (Chair) and husband Sean, Carmel Rodohan, Roy Smith, Val Southorn

Apologies received from: Eileen Anderson, Janet Ashenden, Wilma Atherton, Mike and Jane Batho, Teresa Bryant, Freeda Burford, Vera Butler, Suzanne Carr, Christine Checkley, Lorna Cherry, Melvyn Corley (Treasurer), Anne Corley, Marion Darville, Cynthia Dudas, Margaret Duggan, Abby Evershed, Karina Garcia-Casil, Pam Grietens, Peter Hider, Louise Higgs, Penny Knock, Vicky Lambell, Therese Loh, Cathy Mayer, Sandy Mitchell, Margaret Moran, Stuart Newton, Margaret Palmer, Jack Pennington, Judith Pottle, Therese Rodohan, Annie Schofield, Margaret Shearer, Martin Stanley, Betty Storey, Jane Thurlow-Buckley, Geoff Treglown

1. After a welcome by Sally Rodohan to all attendees, Sally presented a short summary of the TMS’s activities and achievements in 2005. The London/SE Support Group had regular successful meetings and was now joined by new Poole group. The older Scotland, Telford and Manchester support groups continued to flourish. TMS had formed strong alliances with British Brain & Spine Foundation and Neurological Alliance, and contributed to joint consultation with Dept of Health and Healthcare Commission re the new National Service Framework for Long Term Neurological Conditions. The Committee had also made hundreds of corrections to the TMA database. Unfortunately our fundraising had been poor. There were 76 new members during 2005.

2. Tony Brohn had resigned from the Executive Committee, and Simon Turner and Mel Corley retired by rotation. Mel Corley, Carmel Rodohan and Therese Rodohan were elected to the Committee for new 3-year terms, to join Sally Rodohan, Lew Gray, Yvonne Kolesar and Jean Anthony who continued in their posts. All Executive Committee members had been familiarised with the responsibilities of charity trustees and had signed declarations for the Charity Commission.

3. Sally emphasised that there were still two positions vacant on the Executive Committee and any members who were willing to assist would be welcomed and co-opted onto the Committee for 2006.

4. In Mel Corley’s absence, Lew Gray presented the Annual Accounts. The charity had received 46 donations from members, over and above the money collected at support group meetings – we are very grateful and every donation was acknowledged and thanked. Generous corporate donations had also been received from Zurich Assurance and Computer Associates (employers of members). Committee members donated all their expenses. Our costs were also minimal because there was no TMA Newsletter (Journal) to distribute in 2005, which would cost up to £2000 in early 2006 and be our major expense and wipe out most of our 2005 surplus of £2541.43. Our fundraising had been poor in 2005 and we needed to improve this.  Lew would submit the 2005 Annual Return to the Charity Commission next week.

5. The members present voted to accept the accounts, and to thank Mel Corley for his excellent work setting up the bank account and organising Gift Aid which had collected almost £800 during the year. A few questions were raised from the members attending. Shouldn’t the TMA Newsletter be distributed electronically if this was our largest expenditure, so TMS money could be devoted to research, treatment or even symposium?

6. Sally outlined TMS aims and objectives for 2006. We would concentrate more on fundraising in 2006. The first fundraising event (Irish music and dancing) was scheduled for 17th June in Finchley.  The Committee would like to organise a possible visit to UK by Dr Kerr later in the year or early 2007.

7. A discussion took place regarding TMA/TMS publications. The sense of the AGM was that UK members needed a Newsletter (to cover news and fundraising, as opposed to scientific articles and In Their Own Words which would appear in the TMA Journal). Members felt there was no shortage of material for a Newsletter. Ideally the Newsletter should be international, with space left for individual countries to insert their own news and events. The Newsletter ought to appear regularly at least quarterly, and be distributed electronically by default and on paper by request.

8. Upcoming events were announced:-
• TMA Journal was coming soon (104 pages)
• TMS fundraising 17 June Finchley North London (near North Circular Rd / A1)
• TMA Symposium Johns Hopkins Baltimore USA 19-23 July
• Mobility Shows were at Edinburgh 5-6 April and Swindon 8-10 June www.mobilityroadshow.co.uk
• Myelin Project fundraiser football match West Ham 20 May
• TMA Kids Camp in 2007 (South Carolina)

9. Following tea break (excellent food provided by Yvonne), the 8th meeting of the London/Southeast Support Group took place.

10. Piers Bryant (33) is a personal trainer. He got TM in 2003 which GP totally failed to recognise and dismissed as possible trapped nerve. Piers was having osteopathy at the time, which he feels aggravated the TM symptoms. Lyme Disease was suspected. Piers had arm weakness for weeks and then pain at the top of his spine, numbness in toes rising until he was paralysed for 4 weeks, then went to Switzerland and got MRI and 4 shots of cortisone. The MRI showed C4 ‘blemish’ spreading up and down to T3. A Swiss doctor expert on TM said his sensation was unlikely to change and he had 20% risk of recurrence. On return to Sussex (Hurstwood), UK doctors gave him antiviral intravenous treatment every 4 hours, followed by steroids since it was dangerous to do both simultaneously. Piers also attended Johns Hopkins in US (Dr Pardo) where a neurosurgeon surmised that his hereditary stenosis (narrow canal in spine) might have combined with prolapsed disk in cervical spine to compress spinal nerves and possibly cause TM. (Johns Hopkins was very expensive.) Piers still suffers from poor sensation and bowel problems but is back at work.

11. Kenneth Matheson got TM in 1952 when he was 14, was permanently paralysed from T5 down, hasn’t seen a neuro for 25 years. Kenneth has basically lived in a wheelchair ever since, although he also did National Service in ‘50’s, worked since ‘60’s as clerical officer and recently Access Advisor for LB Hammersmith Planning Dept until he retired last October. Kenneth lives alone in his own flat, drives his own Motability car, swims weekly for exercise, struggles with kidney and bladder problems. Kenneth thinks we could improve our disabled driver info on our website, is a member of Disabled Drivers Association.

12. Neil Edmunds got TM 10 years ago when he was 19, while playing rounders at the pub. The local Romford hospital couldn’t diagnose his hyperventilating, so he waited 2 weeks to see a neuro. He tried to carry on working in manual job but couldn’t manage, was told to slow down last year by his neuro (who has gone private in Brentwood since 2000). The neuro says he is amazed there hasn’t been a second attack, has suggested a personal exercise program.

13. Carol Lodge was diagnosed with T7 lesion in April 1996 by Dr Barnes at Atkinson Morley, took steroids at home for 2 weeks but got worse after tailing off the steroids and had to be admitted to hospital. She had intravenous steroids for 4 days which improved her condition. But she relapsed again at the weekend and then had another 4-week course of oral steroids. By that time she could walk on sticks and went home, was off work and continued steroids for 5 months until November 1996. Carol read that Johns Hopkins think that 20% of TM diagnoses have recurrence within 12 months. In her case her fingers started tingling, banding pain came back and she went on steroids again. She recovered again, raised her children (son now 17, daughter at Nottingham Law School).  She tried forcing herself to walk 4 miles a day from 2001 until her father died in 2002. Now she can still do 4 miles once a week but using a walking stick (poor sensation).

14. Angela Dunbar had sciatica and numbness in her legs and feet in July 2002 which doctors thought might be due to stenosis (pressure on nerves due to constricted channel in cord). She had MRI privately (only 6-week wait, during which she developed more symptoms in her hands). The MRI looked at the lumbar and thoracic part of the spine, and showed up a disk bulge. Problems continued with extreme fatigue, migraines, jaw and bowel problems. Osteopathy helped at times, but symptoms continued. Angela went back to NHS and had MRI at Wexham Park (Slough) of her entire spine and brain, which found single lesion at C3-C4, was diagnosed with TM in September 2005. She continues to suffer from pain and sensory impairment, but believes a positive outlook is the very best medicine.

15. Members agreed that now that we had better literature we must try harder to get it into the main neurological hospitals – starting with NHNN where we are now!

16. Lisa Mann was asking our advice to suggest a better neuro locally. Dr Hillier in Poole was recommended by members – but Poole is a long way from Brighton. (Subsequently John Nash member in Brighton has taken a job as Operations & Services Development Manager with the Federation of Disabled People for Brighton & Hove, and he was able to assist Lisa.)