TRANSVERSE MYELITIS SOCIETY
 
TM S.E SUPPORT GROUP 6TH MARCH 2010
Venue: Pembury Village Hall  1.30 pm till 5pm
 
Attendees:  Jane Pearson, Laura Pearson, Jayne Rose, Paul Rose, Farshideh Bondarenko, Paula and Malcolm Penn, Barbara Babcock, Lew Gray, Joan and Tim Bridges, Clive Dibben, Mark Flynn, Fran Rourke, Sue Attenborough, Michelle Lee, Claire Roberts, Lucy Schofield, Duncan Hughes, Annie Schofield (Group Leader), Peggy Hughes (Treasurer), Carol Preece (Secretary).
 
Apologies:  Barbara Brett, Dave Wolff, Julie Johnson, Karen Corr, Rachel Bond, Loretta Turner, Margaret Duggan, Theresa Cary, Yvonne Parfitt, Cynthia Dudas, Glen Palfrey, Peter Bennellick, Jeff Hooper Claire Blake, Al Ishmael, Lorna Cherry, Ros Gallagher, Vicky Gray, Graham Doughty, Heather Coltman,Simon Dray.
 
Annie welcomed everyone to the first South East Support Group and began today’s meeting by introducing Lew Gray who has TM and is the secretary of the London Support Group and Farshideh Bondarenko, a Neuro Physiotherapist who would be giving a presentation.
 
Introduction
 
Annie set the scene regarding the group being formed. In 2004 she found herself paralysed in hospital with a diagnosis of TM, Annie recognized her initial reaction was to blank the condition yet to feel empowered and have control she found herself researching TM and discovered quickly how we all tackle TM in different ways. Annie began to communicate with Lew which she found supportive but the distance to London for the support group would have been too exhausting. Annie wanted to be actively involved in a support group and with Lew’s encouragement contacted Peggy and Carol. The three of them met in February for a planning session……………..and here we are!
 
Annie said she had received a lot of interest from people who were unable to attend today but who had requested Minutes and to be kept informed of further meetings. To get the group up and running the three of us had agreed to take on specific roles, Annie as Chair, Peggy as Treasurer and Carol as Secretary.(As the group gets established these roles will be reviewed in case other people wish to take a lead part)
 
Peggy shared her TM onset being paralysed from the waist down in March 2009 and felt TM had changed her life-style and attitude towards life for the better. Peggy described TM as ‘something you have to work on every day’. Peggy found reading about the extraordinary wide ranging symptoms we all manage enlightening and that from each personal story we can learn more about TM and hopefully by then sharing this with health professionals we are educating them too.
 
Carol found waiting 7 months for a diagnosis the most stressful part of TM, initially becoming ill in July 08. Through information via the London Group minutes she was able to ask more specific questions of her consultant but now with hindsight and information she has gained from Peggy and Annie realizes she did not question health professionals enough. Carol felt being able to laugh at her own appearance and situations she found herself in helped her get through.
 
Lew was diagnosed 21 years ago with TM initially paralysed for 5 months. Lew linked in with the American support groups but realized we needed our own in the UK. In 2004 The TM Society was set up as a charity starting small with just approx 80 new cases a year now we have between 150-180 new members each year. Lew described how other groups were located geographically. Lew felt it was important to continuously exchange our experiences and information as every case is different.
 
As a group we all acknowledged that by sharing and passing on relevant information to health professionals/alternative therapists etc we were then informing and hopefully assisting in changing practice.
 
General TM update
 
Lew shared the following information;
 
AGM is 17th April in London
 
June 5th Planning meeting for all Group Leaders which will inform the agenda for the TM Conference in Spring 2011
 
Amy Edwards A Psychology student (who contracted TM as a teenager) is carrying out a study into the fatigue side of TM using the  M.S scales and applying them to TM. She has had 58 people respond initially but has not received enough completed questionnaires, therefore Lew asked anyone interested to let him know.  Paula and Jane asked to be linked to Amy.
 
The Walton Research Project are trying to get the British Association of Neurology to publish clinical research. The next stage of the project is to look at clinical review data, which could show how medication is used and the outcome, however the ethics of this study have to be explored first.
 
American Symposium September 2010 in Dallas. Last time some travel grants were agreed to assist people in attending, anyone interested contact Lew.
 
In the last news letter Barbara Satler advised all TM’ers to take a friend to all consultant appointments so they could take notes/ask questions you may not think of, she also stressed the importance of sharing what works for us eg; Botox
 
 
Presentation from Farshideh Bondarenko
 
Farshideh is a Neuro Physiotherapist who works with people with TM, enabling them to know what to do for themselves and how to make a difference to their quality of life. Farshideh is a member of the TM Society Committe.  Farshideh also specializes in working with children.  She spoke about how she had changed her practice from the focus being on movement to feelings/sensations. Examples were given that we can all relate to, lack of sensation, numbness, over sensitive, pins/needles, vibratory sensation and neuro pain. Farshideh stressed that TM’ers need to take control of their own recovery and by understanding how to address the feelings we can the affect more positively change in our movement.
 
Today's session focused on balance and sensation. This was very practical with Farshideh demonstrating her ‘bag of tricks’.
 
Ball for mobilising the spine which could be used on the floor or a bed
 
½ Hedgehog balls for balance and stimulation.
 
Moving Step good to learn weight transfer
 
Plank Walk again for balance and posture
 
Weight transfer helps to realign the pelvis, and also helps with eye movement for recognition of distance and space( a lot of TM’s walk looking down at feet/stick which can create other pelvis/lower back problems)
 
Farshideh explained how everybody has the ability to change and that tightness/spacity can be reduced if we use proper movement. “Thinking about how to get the best out of the body I have got, it's about changing our own ability”
 
Most people tried the various pieces of equipment. Farshideh distributed web sites and approx costs.( These can be found again attached to the minutes)
 
Everyone agreed Farshideh had motivated us all with her inspiring advice.
 
 
Break for refreshments and a relaxed getting to know each other time
 
 
CIRCLE TIME
 
Everybody present shared their individual stories and from this various discussion points were raised.
 
Some people found they now suffered from fatigue and it was agreed how debilitating tiredness can be, but it does not often seem to be recognized as part of TM.  This may be an area we can cover more in a group meeting.
 
There was a discussion on alternative therapies that can help to raise energy levels, assist with improving breathing and increase the blood flow.  The complementary therapies that some people had tried and found useful, where Shiatsu, Tai Chi, Cranial Sacral Therapy, Reiki and Acupuncture.  Alongside this, people had found swimming, Yoga and Pilates helpful for balance and coordination. 
 
To improve pins and needles and to help with sensitivity, Farshideh suggested using a ‘brushing technique’ down the legs and on the feet which can help to desensitize, and holding a small metal comb in the palm of the hand can help if the hands are affected.
 
There was a short discussion about bladder problems and how Botox can be extremely effective.  However, this can only be used if you have spasticity of the bladder.  An ultrasound is needed to confirm this.
 
Annie thanked everyone for attending and hoped they would return at our next meeting in June.
 
Thanks to Claire, Michelle’s friend who was our physio ‘guinea pig’.  Thanks to Duncan and Lucy for serving refreshments and helping to clear up after the meeting.
 
Farshideh presented Annie with an orchid from TM London Group in recognition of her work in setting up the South East Support Group.
 

Next meeting – Saturday 26th June 2010 @ 1.30 p.m.
 
 
 
 
 
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