Transverse Mylitis Society

Minutes of 11th London Support Group Meeting 3rd December 2006

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

Attendees: Carmel Rodohan, Sally Rodohan (Chair), Therese Rodohan, Yvonne Kolesar, Jean Anthony (Treasurer), Linda Lee, Jodie Douglas, Roy Smith, Rob Reeves and Silvana, Edward Taylor and Sheila, Sally Dray, Peter Payne and Caroline, Wilma Atherton, Carola Schachtschabel

Apologies: Lew Gray (Secr), Kenneth Matheson, Abby Evershed, Hilary Barefoot, Martin Stanley, Jack Pennington, Elaine Foulds, Lorna Cherry, Loretta Turner, Maureen Hodgkinson and friend Jean Sole, Ian Kirk, Piers Bryant

General Charity News

1. Sally welcomed everybody particularly new members Linda, Peter and Jodie to the meeting and passed on apologies from various absent members.

2. Other support groups were discussed particularly Poole. Dr. Hillier a local neurologist gave a very interesting presentation on TM to the Group at their October meeting. Sally and Lew attended. He confirmed that there are no cures for TM yet but said to concentrate instead on TM management. For 8000 patients with neurological conditions in Dorset, there are only 3 neurologists. The field is having difficulty recruiting as it is so specialised and so complex. More support groups will help to raise profile and interest in TM.

3. Jan Fox has retired from the running of the Telford group. New leaders Anna  Paulsson-Habegger and Kelvin Holmes were happy that 30 members attended their first meeting.

4. Manchester meeting was less well attended but very worthwhile, and we are confident that attendance will be increased in the future. The same applies to new group in Berkshire which had a second meeting.

5. SR and LG attended the Neuro Alliance AGM/Conference. SR reported that it was extremely beneficial. The NA want to do a lot of work but their funding was cut after NSF launch, which has restricted the amount they can do. The NSF is being implemented gradually, but is happening at a much slower rate than was hoped for. But there have been some successes. The Alliance does however encourage member organisations to think of how they can use the Alliance for campaigns that can benefit all. They also welcome opportunities to co-sponsor campaigns led by member organisations. Full details are available.

6. Currently the Committee is concentrating on making the TMS better known. This is being undertaken in several ways: Firstly by contacting other useful organisations such as the MS Society and the Neuro Alliance. Also by updating the UK part of the website regularly. Finally we are contacting new members quickly. This all amounts to the charity becoming more accessible to TMers.

7. Plans for the TMS to hold a Conference/seminar are slowly being formulated. It is thought that this will go ahead in June, possibly at the Institute of Child Health in Great Ormond Street near NHNN. Dr Doug Kerr, a neurologist from John Hopkins University has agreed to come over and speak, and Prof. Giovanoni and Dr Diane Playford UK neurologists have also agreed to speak.  A number of questions were raised and discussed regarding this matter:     

1. What format would the Conference/seminar take?
2. Would we charge people to attend?
3. How will we find a date that suits everybody?
4. How will we attract neurologists (other than the above) to partake?
5. Who will be invited to attend?

Tea Break

8. During the break, everyone enjoyed much appreciated tea and refreshments kindly provided by Yvonne and we raffled a cake home baked by Yvonne, a bottle of Sherry donated by SR and some liquors donated by CR.  The raffle raised £75. Winners were Piers, Wilma and Sally D.

9. Wilma also brought along some handmade Christmas cards and a further £18 was raised from sales at the meeting. Sally took the remaining 21 cards to sell and will forward the proceeds to Jean Anthony (Treasurer).

New Members’ Experiences With TM

10. Linda Lee got TM when she was a child. She wasn’t sure of what was wrong with her until she was 20. It affected her by paralysing her down the left hand side and by loosing the sensation on the right. She was hospitalised at the time for 3months. She was determined to walk and did make a fairly good recovery. She remembers having to wear a plaster/splint to bed. For some time after discharge from hospital. For thirty years things have happened to her and she never associated them with TM. Currently Linda is not seeing a Neurologist but has developed arthritis and is attending an orthopaedic specialist for treatment. He has suggested a knee replacement so she is deciding for or against the surgery at the moment.

11. Jodie Douglas’s sister introduced her to the TMS. She contracted ADEM after a severe bout of food poisoning. She was in hospital for quite a long time and underwent a kind of blood washing before finally being diagnosed with ADEM. Another form of treatment she tried was acupuncture along with 6 other members of the group. They reported varying levels of success. Jodie’s sister completed the Brighton ten mile run in aid of the TMS and raised £523. We are very thankful.

12. Peter Payne had a quick diagnosis of TM.  He is still experiencing symptoms, particularly in one leg but is reasonably mobile. Learning to live with the condition.

13. Wilma Atherton, who attended her first meeting last year in a wheelchair, reported that she had ongoing improvement. She recently spent some time in a Buddhist nunnery, and found it very helpful. She also gains pain relief from the use of magnets.

14. Carola Schachtschabel arrived a bit late having been to a Christmas fair where she was selling some of her own handmade decorations.  Carola was very unhappy having lost her job the day before.  This was a temporary contract but because she has had to have so much time off due to TM, her employers were not keen to lengthen her contract. Her hands in particular are very painful and she is finding life quite difficult.

Other members contributed to general discussion relating to the various experiences

Other news

15.  Julie Johnson daughter of Brian Anderson took part in the great North Run and raised £586. Well done and Thank you.

16.  Next meeting will be on Saturday, 10th March 2007 at 1.30pm.

17. The meeting closed at 4.15pm.

PS Please note since the meeting Dr Kerr has contacted us to say that June is not suitable for him to come to London. He has mentioned autumn as a preference. Hopefully, we will be able to fit in with this time and will keep you informed of developments later.