Transverse Myelitis Society
Minutes of 16th Meeting London Support Group 16th February 2008
At EC Harris HQ, 34 York Way, Kings Cross, London
Next meeting: Saturday 19th April same venue 2pm = Annual General Meeting
Attendees: Jean Anthony and Barrie, Wilma Atherton, Helen Considine, Jodie Douglas, Lew Gray (Secr) lewgray@blueyonder.co.uk and Lew’s sister Priscilla Scott, Yvonne Kolesar and Simon, Ken Matheson, Emma Murray, Sally Rodohan (Chair) sp.rodohan@btinternet.com Carmel and Therese Rodohan, Roy Smith
Apologies received from: Clare Blake, Harry Blankson, Piers Bryant, Lorna Cherry, Jane Clark, Sheila Demery, Sally Dray, Cynthia Dudas, Margaret Duggan, Abby Evershed, Pauline Hughes, Penny Knock, Cathy Mayer, Glen Palfrey, Jack Pennington, Gill Rowe, Milisa Savic, Martin and Linda Stanley, Rob and Jane Stevens, Jane Thurlow, Loretta Turner, Roger and Sally Wilkinson
- We started off with lovely refreshments prepared by Yvonne. Everyone agreed the new venue was easy to find and access.
- Sally welcomed everyone, especially Helen Considine who was a new member. There was a brief discussion of why there were fewer new members in the last couple of months. Lew mentioned that Geoff Treglown who normally processed all new members for UK and Europe had been ill. Members offered to help Geoff. (However Geoff is now up to date with new members and New Members Packs posting with Sally’s help photocopying.
- Helen Considine from Finchley told her story about TM. (Actually this was more a dialogue since there was lots of discussion which is not recorded here.) Helen started off with a ‘grab on the ribs’ pain from August to October 2006. Her GP thought it might be a slipped disk. She went privately to Prof Jarman at Queens Square who put her on steroids. But she continued to deterioriate and in December Prof. Jarman said there was nothing more he could do for her, apart from offering drugs for pain and fatigue which Helen was reluctant to take – a nice holiday in Cyprus helped more. Helen went back to work (works at home with children) but had a relapse in August 2007, when she lost her grip strength in hands, suffered from spasms and poor balance and her vision was affected. She heard about our TM Conference, attended and met Dr Playford who agreed to see her and gave her a multi-disciplinary assessment at Queens Square. Helen found the physio unhelpful (claimed she ‘didn’t need’ physio) but the O.T. was very good apart from a somewhat exaggerated focus on work which the OT really didn’t understand properly. Lew suggested that Helen might consider going to his physio Farshideh Bondarenko in Ealing (has attended our meetings and offers FOC assessment to anyone with TM) www.neuro-physio.co.uk
- Jean Anthony gave an update. Jean had rejected the suggestion of a bladder augmentation operation, was continuing to use oxybutinin and detrusitol.
- Jean and Jody Douglas had both experimented with botox injections for continence. Both found little effect, but the dosage used was only 20mg whereas 30mg was recommended for neuro conditions. Jody was intending to try a higher dose in 6 months.
- Jody was also interested in going to Johns Hopkins to consult Dr Kerr, and asked if any other members had been there. Piers Bryant and Gaynor Eyles had both been there, and Gaynor continued to consult Dr Kerr as her main contact. Lew promised to update Gaynor’s email and send it to Jody and other members who had asked the same question (Wieders from North London and Janet Thompson from Oldham), so they could talk to Gaynor if they wished. (Gaynor said she was having good results from coca leaf tea from Peru!)
- Emma Murray was having good results using a chiropractor. Emma was keen to write an article about TM and Cosmopolitan was interested. Lew promised to select women 20-35 as potential subjects and put them in touch with Emma. Emma is planning a wedding in May!
- There was a discussion how to organise these meetings in future. The main purpose of the meetings was to support new members. Speakers would be useful on special topics eg nutritionist or Expert Patient course tutor, but we didn’t want to lose the interactive/conversational feeling of the meeting. Someone suggested we alternate Support and Informational (speaker) meetings. We could also consider updating the Members Questionnaire originally done in 2004.
- Provisional dates for next three meetings in 2008: 19th April, 12th July, 18th October.
- Lew and Farshideh are going to TM Symposium in Seattle 16-19 July. Is anyone else from UK interested in going / further information? Please contact lewgray@blueyonder.co.uk The Symposium website is now available http://www.myelitis.org/rnds2008/
|