Minutes from Poole & Bournemouth Transverse Myelitis Support Group Meeting

26^th January 2008 at 2pm, St George’s Hall, Oakdale, Poole

Present: Mary Bergin, Andrew Berry, Patrick & Janet Biss, Teresa Bryant, Pauline Cashmore, Christine Francie, Barbara & Barrie Houston, Enid & Ted Jones, Malcolm Plested, Peter Poll, Gill & Alan Rowe, Barbara Sadler, Francesca Stanford, Judy Stanford, Yvonne Trapp, Kathleen Vincent, June Ward, Amy White, John & Rita Withey, Jean & Roy Wright, and Robin & Val Young

Apologies: Frank Devine, Lorraine Exley, Lance Harris, Sue Hyatt, Louise Higgs, Connie and Phil King, Alison Ridout, Linda & Martin Stanley, and Graham Ward.

Teresa opened the meeting by welcoming new members, Patrick & Janet Biss, from Somerton, Somerset. Roy Wright was also welcomed.

She said she was pleased how new members were able to make contact and attend meetings, although her telephone number on the contact information is incorrect. Her address is :20 Tangmere Place,

2 Gibson Road, POOLE, BH17 8QY Tel: 01202 244356

She informed the group about Lew’s wife, Val, passing away. She also mentioned that Sally’s husband, Sean, has had a stroke. We are all thinking about Lew, Sally and Sean.

Jean & Roy have a friend called Mary, who runs the Three Craft Group. She has donated funds from her garage sales to our group – a total of just over £112. She will also be donating funds raised from their Jan/Feb/March sales to our group.

At the last committee meeting, funds were discussed. Subs pay for the hire of the hall, whilst the raffle and the money from the sale of Val’s cards, plus donations, create quite an income. The group was asked for ideas of how to use this money. The committee thought that one way would be to help newly diagnosed members, perhaps with help to pay for an initial consultation with a physiotherapist. Enquiries had been made regarding private physiotherapists, and several leaflets/information sheets had been obtained. A list is being created.

Another possibility is to have social events. Something before Christmas, perhaps? It will be discussed further at the next meeting, but could members think about it and come with ideas.

Yvonne’s son has produced some leaflets – perhaps they could be put up in doctors’ and dentists’ surgeries, as well as libraries and community centers. This will raise the profile of TM.

Yvonne is now the librarian and publications officer. She had information from The MS Trust. There is an exercise DVD called Move it For Me, and also a book of exercises which Yvonne recommended. There is a magazine called New Pathways, plus leaflets available from the MS society. Anyone interested can ring and ask for them. Yvonne had brought a collection of items for people to look at.

The official Patients sourcebook on TM has been purchased, and is available on loan.

Teresa mentioned that the group is now more than 2 years old, and needs to develop. More committee members are needed. Would anyone like to offer their services?

Val has now put a TM sticker on the back of her cards, along with the charity number.

Gill Rowe mentioned the Neurological Alliance. A group has just been set up near her. Teresa thought it would be a valuable group for lobbying

A speaker will be asked to come to the April meeting. Suggestions of an OT for fatigue management, a physio or someone to talk about benefits were made.

Malcolm told us that he has finally been given a diagnosis – not of TM or MS, but Spastic Paraplegia.

In his case, exercise is extremely important.

There was discussion regarding the fact that few consultants know what is on the TMA website, and also how few medics know anything about TM.

Pain relief was talked about, particularly regarding Gabapentin.

For the remainder of the meeting there was informal chat with tea and the drawing of the raffle.

The next meeting will be on Sat 26^th April at 2pm.