Present: Mary Bergin, Patrick & Janet Biss, Teresa Bryant, Frank Devine, Jo Gilfillan, Lance & Angela Harris, Clive Harris, Keith & Lin Hooper, Bob Leach, Peter Poll & Barbara Sadler, Gill & Alan Rowe, Ann Sparling, Sylvia Subramanyam, Yvonne Trapp, Kath Vincent, and Jean & Roy Wright, Robin & Val Young.
Apologies: Connie King , Hilary Barefoot, Barbara Houston
Teresa introduced Dr Charles Hillier and he gave a very informative presentation on TM and answered a number of questions many related to the link with MS. Slides from his presentation are attached to the email with these minutes. He also brought two papers which will be available at meetings. They can both be accessed online and are recommended reading if you wish to have a better understanding of monophasic TM, recurrent TM, links with, and likelihood of progression to MS. The first is a factsheet produced by the MSTrust entitled 'Clinically Isolated Syndrome' which can be found by accessing publications on www.mstrust.org.uk . The other article he recommended if you wanted a good overview of what TM is, how it is diagnosed and its treatment, is found on the US website www.myelitis.org in the section on TM 'Transverse myelitis: Pathogenesis, Diagnosis and Treatment'.
A number of members were concerned that over time their condition has worsened but it is difficult for this to be acknowledged as there is no regular follow up. Dr Hillier encouraged members to ask for referral back to a neurologist if there was a definite change or deterioration over a period of time as this should not occur following a monophasic episode of TM. Some members felt that although they knew their symptoms were worse, further scans had not shown any change. Dr Hillier explained that this did not mean that there had been no change. Scanning techniques are always improving and MRI scans now pick up what CT scans previously did not, and it is likely that in time it will be possible to see more detail. TM may exist as part of a multi-focal disease of the central nervous system (eg MS) or as part of a multi-systemic disease (eg lupus erythematosus) or as an isolated incident without cause. He explained that people with TM show such a variety of symptoms because it relates to the area of damage to the myelin – at what level this occurs on the spine, and whether the area damaged affects sensory (causing changes in sensation) messages, or motor messages which will affect movement, or if the damage is 'tranverse' (i.e. right across), it will affect both and likely to lead to permanent disability.
After Dr Hillier's presentation there was a break for tea and cakes.
Mary then resumed the meeting telling the Group about the following items.
The last meeting on July 23rd was a yearly overview and a talk from Richard Bristow, manager of Poole CAB who told us about recent and proposed Benefit changes.
We were sad to hear of the death in September of June Ward after a long battle with cancer. June and her husband, Graham (a TM sufferer) have been involved with the Group since it was formed in 2005. June was an active and valued member of the Committee until ill-health made it impossible, but our memory will be of a very positive, inspiring loving lady who will be greatly missed. Several members of the Committee were able to attend her funeral.
The sponsored walk in June raised a magnificent total of £1,780.86. Thank you to all 15 people and dogs who took part. The website is currently being updated with photos of the wet walkers.
Mary has attended a cheque presentation, where she was given a cheque for the Group for £1005.26, by Stephen Bell. The money had been raised by a Mower Race in August 2011, an event which was organised in memory of Stephen's mother who died from TM/NMO in April 2010. The family have asked that this donation is used to raise awareness of TM and the charity. The Committee have discussed this and propose to organise articles and advertising for the Group to be published in local papers and magazines with this aim in mind.
The local page on the TMS website has been updated with lots of new links and photos. Please take a look.
Please look at www.changing-places.org – a website giving details of accessible toilets, with hoists and changing beds which can be accessed using a radar key.
It has been decided nationally that June 9th 2012 will be TM Awareness Day. This is being co-ordinated locally by Jo Gilfillan who will be organising TeaM (tea) parties. For ideas and more info about this please contact Jo at jo_gilfillan@hotmail.com. The Facebook TM Awareness Day page is now up and running on www.facebook.com/groups/165583246856635
11 new members have contacted the group since Oct 2010
Mark Adams, a new member of the Group, has an electric wheelchair which does need a new battery, as it was last replaced in 2006, and this would cost around £110. He would like the chair to go to a new home. Bearing in mind the cost of replacing the battery for the new owner, all Mark is asking is for a suitable donation to go to Julia's House Children's Hospice in Corfe Mullen, where his wife works as Lead Nurse. If you are interested please contact Mary for more details.
We have a supply of collection boxes, displaying the TM logo, for your small change which are available at meetings. When full, please bring back to a meeting and give to Frank, our Treasurer.
Gill Rowe represents TMS on Hants Neurological Alliance and is their Membership Sec. We have paid £25 to be affiliated to the Alliance and included in their listings, with a link through to the Poole webpage.
Money was raised for the group at the meeting through (a) the sale of Linseed (£1 a pack) -a natural remedy to keep constipation at bay, backed by research (and anecdotally by several members!) and through ( b) Paperback book swap (50p a book)
Lance gave out slips with details of next year's meetings:- 28th Jan, 28th Apr, 28th July and 27th Oct 2012. The Jan meeting will be from 1-3pm. There will be no physio, but as in previous years the January meeting will be social gathering when homemade soup, bread, jacket potatoes and cheese will be served at a cost of £3 (this includes subs). There will be a raffle and the meeting will close at 3pm to allow for travel at this time of year.
The Poole Group has now been in existence for 6 years, founded by Teresa and Barbara H. Mary has been Chair/Group Leader since April 2008, but due to changes in her personal circumstance she announced that as from the January meeting she would be stepping down as Leader. The group has developed and grown under her leadership and TM Awareness has been raised through her enthusiasm. The Committee will discuss the way forward for the Group and the appointment of a successor for Mary.
We would appreciate feedback on the value and suitability of the neurophysio sessions held before meetings. Helen Curtis who supervises the sessions will be our Guest Speaker for the April meeting next year. She will be asked to design a suitable exercise sheet to encourage regular stretches and gentle exercise to build up flexibility and muscle strength, which is so important following discharge from immediate therapy at diagnosis.
The raffle was drawn at the end of the meeting and this time the hamper of Christmas goodies was won by Patrick Biss. Mary wished everyone a happy Christmas and New Year and the meeting closed at 4.15pm.
Next Meeting – January 28th 2012 at 1-3pm |
