Transverse Myelitis Society

Minutes of 13^th Meeting London Support Group 9^th June 2007

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

Next meeting: Saturday 1^st September same venue 130pm

Attendees: Nana Yaa Agyeman and friend Viv, Gill Archer, Wilma Atherton, Harry Blankson, Farshideh Bondarenko, Lewis Gray (Secr) lewgray@blueyonder.co.uk Therese Loh, Cindy Morelli, Rob Reeves, Sally Rodohan (Chair) sp.rodohan@btinternet.com Therese Rodohan, Roy Smith

Apologies received from: Jean Anthony, Hilary Barefoot, Clare Blake, Teresa Bryant, Andrew Butler, Martin Bye, Pat Capp, Sally Dray, Cynthis Dudas, Margaret Duggan, Angela Dunbar, Penny Knock, Yvonne Kolesar, Carol Lodge, Ken Matheson, Carmel Rodohan, Carola Schachtschabel, Margaret Shearer, Rob Stevens, Martin Stanley, Edward Taylor, Jane Thurlow-Buckley, Geoff Treglown, Loretta Turner, Adele Wieder

Announcements – TM Conference 13^th October, MS Society cooperation

1. Sally welcomed everyone and then Sally and Lew gave an update on the first-ever UK TM Conference which is scheduled for Saturday 13^th October. In addition to Dr Kerr who is coming from Johns Hopkins in US, we have some excellent speakers including Dr Diane Playford who is a specialist in Neuro Rehab – so the Conference will not be just about diagnosis, acute treatment and research. We are still working to finalise the agenda and the Conference brochure.

2. The MS Society has issued an official assurance that all members of TM Society are eligible to use MS Society local services and join local MS Society branches, since TM and Devics are definitely ‘related conditions’ to MS (in the meaning of the MS Society Constitution). Any questions or need a copy of the email? -  please contact Lew.

3. We then stopped for tea break, with excellent refreshments provided by Sally and Therese.

Speaker’s Presentation on Neuro-Physiotherapy

4. We welcomed Farshideh back to the TM Society. (Farshideh’s website is  www.neuro-physio.co.uk ) Farshideh explained that after an injury to the brain/spine, within 48 hours the brain is developing new patterns of ‘compensatory movement’. This allows the body to cope, but it causes extra work/fatigue, imbalance, strain and pain elsewhere. In order for recovery to proceed, the brain must be re-trained away from compensatory movement (sometimes long established), back to original, natural patterns. At first true natural patterns feel more difficult and less effective, because they make us work the injured, weakened muscles – but it is essential first to involve these muscles, in order to recover strength.

Farshideh also emphasises the psychological aspects of TM. It’s as though one loses the ‘trust’ for one’s own body, which is very traumatic. Ideally the therapist needs to work with the patient to re-empower him/her and ‘re-establish trust’ in the new body, learning a new posture, balance and movements which the patient never had to think about before. Unfortunately the medical professionals make things worse. They expect the patient to ‘simply adjust’ after diagnosis, whereas the patient is traumatised and trying to get his/her head around the new situation. Rehabilitation is often denied or limited as well, which makes the situation worse. A simple list of exercises means nothing if it is not integrated with daily functional life. It is vital for the patient to get information because information is empowering. The patient needs to feel powerful enough to ask questions of the therapist, agree goals and work together. 

Members’ Experiences with TM

5. Harry Blankson told his story.

6. Therese Loh got TM back in 1991 in Norfolk. She had hemiplegia (one side weak) plus bladder retention. She was sent home on weekends because the hospital ward closed on weekends, but of course she couldn’t cope. For a year she suffered from extreme sensitivity pain, fatigue and depression. Eventually she was referred to St Marks Hospital who proposed bowel surgery but she refused.

7. Nana is from Ghana where she is starting up a TMA support group – see her website sharecare4u.com  Her own case started with vomiting in 1996. When her limbs got weak she was referred to neurologist, diagnosed with Guillain Barre Syndrome and treated with steroids. When everything recurred in early 1997 she came to UCH in London, was diagnosed with bilharzia (parasite) and treated with steroids again. When the steroids were tapered off she collapsed again, was admitted to Queen Square and required ventilator support to breathe. A spinal biopsy discovered lesion. She went to Queen Square’s own rehab unit in Finchley, managed to walk again after 3 months (DVT complication). She went back to Ghana, was treated with regular steroids, tried physio but too fatigued to continue. In 2001 she started to go blind, was treated again with steroids which improved eyesight but weakened her legs. In 2003 Nana had a seizure and went blind in one eye, went into Intensive Care for a week. She was reluctant to have steroids again but gradually worsened for the next 2 months until she couldn’t move at all. In late 2003 a new neurologist diagnosed her with MS, put her on steroids to treat the symptoms and then azathioprine (immune suppressant) to prevent further relapse when steroids were tapered off. Nana got back home by end of 2003. In 2005 she adopted rigid naturopathic diet which has helped her but the discipline is hard to maintain. Now it is almost certain that Nana has Devic’s Disease (NMO), and this was confirmed by Dr Mike Boggild from Walton Centre recently.

8. Gill Archer got TM after a flight from Australia in 2005. Originally it was suspected she had Deep Vein Thrombosis (DVT). After 8 months of symptoms she was referred to Dr Chataway at St Marys Paddington, who gave her oral steroids and she recovered. But she had a recurrence at Xmas 2006 which was worrying and Dr Chataway recommends azathioprine (the same immuno-suppressant drug that Nana and other NMO sufferers take).

9. Cindy Morelli started off with numbness in 1995. She too went to St Marys who suspected a slipped disk. She had MRIs but was OK after a week. Then in 2000 she had a persistent pain in one side. Then in 2005 she had ‘buzzing’ feeling. Her MRI shows her nerves are ‘shrinking.’ She is now diagnosed with secondary progressive MS, but with preceding nerve damage possibly from TM. Cindy now runs a women’s fitness studio named Curves in Hemel Hempstead, but she is worried by her progressing disability and is taking lamotrigine in a trial.` 

10. £87 was collected ‘in the hat’ to contribute to meeting cost. Next meeting Saturday 1^st September 130pm.