Transverse Myelitis Society
Minutes of 23rd Meeting London Support Group 24th October 2009
At EC Harris HQ, 34 York Way, Kings Cross London N1 9AB
Attendees: Jean Anthony (Treas), Wilma Atherton, Barbara Babcock, Mary Bergin and Andrew, Farshideh Bondarenko, Sally Dray, Ann Goddard, Terry Godwin and friend, Lew Gray (Secr), Peggy Hughes and Duncan, Al Ishmael, Yvonne Kolesar (Chair) and Simon, Therese Loh, Susan Lucas-Upson and Paul, Ken Matheson, Cathy Mayer and friend, Rob Reeves, Sally Rodohan (Pres) and Sean, Carmel Rodohan, Yasmin Sheikh, Janette Skillen and husband, Roy Smith, Leonilde Soares, Rob Stevens and Jane, Edward Taylor
Apologies received from: Larissa Barker, Rachel Bond, Piers Bryant, Marion Darville, Jodie Douglas, Angela Dunbar, Margaret Garnham, Pauline Hughes, Jacqui Manning, Joan Murphy, Malcolm Penn, Sarah Romain, Milisa Savic, Annie Schofield, Martin and Linda Stanley, Jackie Turberville, Loretta Turner, Joanne Vine, Davena Wilson
News and Announcements
- First we had a number of announcements: 2010 meeting dates will be 16th January, 17th April (AGM), 24th July, 23rd October. Put these dates in your 2010 diaries, but be careful to check website in case dates have to change later http://www.myelitis.org.uk/London/index.htm
- Annie Schofield and Peggy Hughes are planning to set up a new Southeast Support Group which will be meeting near Tunbridge Wells (probably Pembury Village Hall) in the New Year. All members from Kent, Essex, Sussex, Surrey and southeast London are invited. Further information from peggy.hughes@btinternet.com
- Anu Jacob reports on his research into TM cases at Walton Centre: original records search gave 319 cases with TM diagnosis. However on close examination most of these were re-diagnosed later to something else, and there are only 31 cases of idiopathic or post-viral TM. There are another 10-20 TM cases found more recently, and Anu proposes to combine about 30 NMO cases since the symptoms are very similar.
- The Brain&Spine Foundation is planning to re-write their booklet on TM (which we distribute via our website) during 2010, and they asked for any comments from TM Society members. The booklet has been downloaded 1033 times from the BSF website. Ann Goddard mentioned the booklet had been very useful to educate her physiotherapist who was unfamiliar with TM.
- Several fundraising events: The Wells and Glastonbury Young Farmers raised over £8000 in their group parachute jump during September. Jodie Douglas who usually attends London/Southeast meeting is going on a sailing Clipper Round the World Race. She is having a Bon Voyage Party for family and friends at end of November, and setting a target to raise £5000 for TM Society. Another member Bradley Atkinson did a parachute jump in September – this was a real achievement for Bradley as he is frightened of heights. Then, after completing his jump from 12000 ft successfully and raising money for TM Society, Bradley went on holiday in Turkey, fell off a pontoon and broke his sternum!
- We have received lovely thank-you notes with lots of photos from Rosie Swift (son Owen) in Middlesbrough and Mags Rogers (daughter Kaitlan) in Birmingham, who were very grateful for TM Society support towards their families’ travel to North Carolina for the TM Kids Camp in August. Both families had a wonderful time and got the chance to meet Dr Kerr etc. The Turners (daughter Emily) from Horsham also went to Kids Camp for the second time but didn’t require any support from TM Society.
Speaker: Barbara Babcock re Goal Setting
- Barbara said today is the first anniversary of her discharge from St George Tooting. She recommended anyone with TM needs to think about their readiness to change. It was essential to review your goals, analyse whether they are achievable, and then design action plans to achieve them. Barbara handed out a sheet entitled How to Set a Well-Formed Outcome.
- Following Barbara’s talk, discussion and a practical exercise, we broke for tea and lovely cakes from Yvonne. Then we moved back into ‘bucket seats’ for our usual chat about everyone and everything. As usual, Yvonne invited the new attendees to tell their stories which led to lively discussion.
Members’ Stories and Updates
- Peggy Hughes was on holiday in New York City in March when she got TM. There was no preceding illness. Eventually after initial diagnosis in NY, she returned to UK and was under Dr Howard at Queens Square. Peggy had 7 weeks of physio at Queens Square daily for 3 hours a day. Then she went home to Kent and has been having private physio 3 times a week, and is on the waiting list for Sevenoaks NHS Rehab Centre.
- Janette Skillen started TM in July with a tingle in left foot which took only 4 hours to rise to her hip and make it numb. She spent 9 days in Colchester General Hospital where she was diagnosed and given 3 doses of IV steroids. She had been taking drugs for rheumatoid arthritis since 2005. Her rheumatologist thought the drugs might have caused the TM so they are stopped now. Janette has recovered partially but still has one numb leg and bad fatigue. She is getting hydrotherapy.
- Yasmin Sheikh had pneumonia after a weekend in Bratislava. Then she had back pain which led to bladder retention and weak legs within 2 hours. She was in St George Tooting for 12 weeks and then went for rehab at Stanmore until October. Yasmin felt being in a wheelchair did not mean her life was over at 30 – she felt her eyes are opened now. She had been treated by Dr Pereira at St George.
- Al Ishmael had been under Dr Foster at St George, where he met Yasmin.
- Leonilda Soares came from Angola. She got TM in August and was being treated at the Wellington Hospital. Initially she felt heaviness in her abdomen, banding pain and then paralysis. She went to South Africa for 3 months, then came to London, initially at Cromwell Hospital then Wellington. Wilma Atherton had also been treated at the Wellington which has good neuro-physiotherapy.
- Edward Taylor gave an update. He feared his ballroom dancing days are over. His doctor now says he is suffering from peripheral neuropathy.
- Sally Dray gave an update. Her neurologist now thinks she has Primary Progressive Multiple Sclerosis.
- Cathy Mayer gave an update. The botox treatment for her bladder has been a great success after 12 months, and when it wore off she was determined to have another treatment. A couple other members agreed the botox treatment was effective and all TMers should look into it if they have bladder problem.
- Next meeting will be Saturday 16th January 2pm at ECHQ. Other meetings for 2010 will be 17th April, 24th July, 23rd October – but check on website in case dates change later http://www.myelitis.org.uk/London/index.htm
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