Transverse Myelitis Support Group

Minutes of meeting 29 th October 2005

Held at St George’s Church Hall, Oakdale, Poole

Attendees:

Teresa Bryant and Andrew, Frank Devine and Jean, Lorraine Exley and Mark,

Esme Fletcher with her mum Jennifer. Linda Graham and John plus daughter Claire,

Wendy Greenhalgh and Teresa, Louise Higgs, Barbara Houston and Barrie,

Sue Hyatt, Connie King and Phil with son Alex, Malcolm Plested, Peter Poll and Barbara, Yvonne Trapp, Graham Ward and June, John Withey and Rita

Guest speaker: Sally Rodohan, Chair of London Support Group

Apologies received:

Georgina Bailey, John Birch, Wendy Bruce, Freeda Burford, Martin Stanley, Lew Grey ( London support group secretary)

The meeting opened at 2.00

After welcoming everyone, Teresa explained the history of the idea of a local support group. She then introduced Sally Rodohan, the chair of the London Support group, and of the Transverse Myelitis Society.

Sally told us how she had contracted TM as a child in 1958, and gave an overview of her subsequent medical history and treatment. It was not until a few years ago that she heard of anyone else having this condition, and therefore even later before she actually met another TMer. She then explained how the London group came into being, along with the TMS. She explained her visions for the future of the society.

During the tea/coffee break attendees mingled, exchanging ideas. Much lively discussion was held.

Following the break, the group was asked for thoughts about the future. Everyone agreed that a group should be formed, with meetings each quarter. All felt the venue was ideal, with even a comment that the toilets were better than at Poole Hospital! Saturday afternoon is acceptable to all.

Teresa asked for volunteers to help run the group. The following people agreed to form a committee:

Teresa Bryant, Frank Devine, Lorraine Exley, Barbara Houston, Sue Hyatt, Barbara Poll, Yvonne Trapp and June Ward

Discussion ensued regarding possible content of support group meetings. Suggestions about guest speakers were made – a neuro-physiotherapist (possibly from the neuro gym at Poole Hospital), a neurologist (Dr Hillier perhaps), an Expert Patient Programme organiser. It was also suggested that a member could act as a contact for newly diagnosed TMers. Pain management created an interesting conversation. Sally mentioned the treatment of one of the London group, which was Spinal Cord Stimulation, by means of a surgical implant.

Finally there was discussion regarding the length of time involved in improvement. There were several very different responses to this, leading to the conclusion there is no ‘one’ answer. Questions were asked regarding progressive, relapsing and recurrent TM. Sally read some of Sandy Siegel’s article in the latest TMA newsletter.

It was agreed that the next meeting be held at the same venue and time, Saturday 28 th January 2006

The meeting closed at 4.00