TRANSVERSE MYELITIS SOCIETY
 
TM S.E SUPPORT GROUP 26th June 2010               
Venue: Pembury Village Hall  1.30 pm till 5pm
 
Attendees: Mary and Andrew Bergin, Sally and Simon Dray, Taryn Davidson, Peter Bennellick,  Jane Pearson, Jilly Johnson, Bliss and Ricky, Keith, Sarah and Ian Romain, Debbie Weller, Alice Schofield,Tim  Duncan Hughes, Annie Schofield (Group Leader), Peggy Hughes (Treasurer), Carol Preece (Secretary).
 
Apologies: Fran Rourke, Michelle Lee, Jeff Hooper, Rachel Bond, Lorna Cherry, Jim and Joan Bridger, Clare Blake, Paula and Malcolm Penn, Clive Dibben, Jack Pennington.
 
 
Annie welcomed everyone to the second South East Support Group and began today’s meeting by introducing Mary Bergin who has TM and MS. Mary is the Group Leader of the Poole TM Support Group. Mary has been a nurse for 14 years and has written an article regarding TM which was printed in The Nursing Times, today she would be giving a presentation.
 
Feedback from the Committe
 
Annie gave feedback from the Group Leaders Conference that was held on the 5th June 2010. The main topic was planning the U.K TM Conference for March/April 2011. This will have a variety of workshops for people to attend. The venue is yet to be decided as it needs to have overnight accommodation suitable for those with a physical disability. The last conference 300 people attended and as there are now more members the figures are likely to be increased. Annie will keep everyone informed as the plans develop.

Annie informed everyone of the new booklet explaining TM available from the Brain and Spine Foundation. Copies were circulated. As a group we felt it was crucial for us all to take responsibility to circulate these with health professionals we all had contact with, Physiotherapists, Neurological Consultants, G.P, Alternative Therapists etc to raise the knowledge about TM. Everyone felt it was an ideal size and had been produced in a manner that family members and friends could also find informative. (Further copies are free from www.brainandspine.org.uk or 0800 808 1000)

Peggy informed the group that we now had a £50 donation to open up the bank account. Peggy asked members to think about how we could raise further funds.
To cover refreshment costs we were suggesting a donation of £2 from each TM but any drivers/family members supporting that person had free refreshments.

Peggy brought to everyone’s attention ‘The Rough Guide to Accessible Britain’ it is free to Blue Badge holders and anyone who has a Disabled Persons Railcard. It gives advice on different venues and disability access. (www.accessibleguide.co.uk or 0800 953 7070 quote MO404D)

Carol spoke briefly about the recent Care for the Carers Week and distributed a list of organisations with their website and helpline numbers. These organisations can give benefit and equipment advice, act as a signpost to other organisations, give emotional support for the carer. Some organisations are specific to supporting children and young carers under 19 years old (see attachment for list)

Guest Speaker
 
Mary Bergin gave a power point presentation on Defining the Diagnosis between Transverse Myelitis and Multiple Sclerosis.( For copy right reasons we are not able to attach the presentation but a copy will be posted to those  apologies.)

The presentation prompted questions and discussion. Mary emphasised that getting the right diagnosis is crucial and where symptoms are constantly changing a second opinion should be sought as the treatment for TM and MS is completely different.
Mary encouraged everyone to “focus on what you can do and not on what you are not able to do”. That it takes time to learn to adapt to body changes but in order to help ourselves we needed to find an exercise regime that suited. This led to a short discussion on healthy eating with one member sharing the changes she had made to increase the level of natural anti oxidants and had found this beneficial.

Break for refreshments (it was good to see people breaking into small groups and pairs and supporting one another)

Circle Time

New people to the group shared their story and people who had attended previously shared what they had tried and found useful to improve the symptoms they had been left with.

One member’s statement was agreed by everyone “that exercise is the main weapon to tackling TM as it’s something you’re in control of”. It was noticed by all that their condition worsened when exercise was not taken.

Swimming and aqua aerobics were found beneficial for co-ordination and strength in arms/legs.
Treadmill and spin-cycling had been found useful for balance and strength in lower back and legs.
Rowing machine for developing upper body strength and Power plate at the gym which helps to stretch muscles
Pilates and Tai Chi for developing balance, concentration on specific parts of the body and relaxation.
Walking but learning to stop before the pain increases and to work slowly on upping the pace and distance.

One person recommended Davina McCall kick boxing DVD, finding the punching and stretching exercises were a good release for tension (both physical and emotional)

Annie thanked everyone for their participation with special thanks to Mary and her partner travelling from Poole to be with us.

Thanks also to Alice, Tim and Duncan for setting up the room and clearing away.
Special thanks to Andy Brett from First Office Systems in Tunbridge Wells who provided the projector and screen free of charge.
 

Next meeting – Saturday 18th September 2010 feel free to arrive from 1.30 p.m for refreshments and the meeting will commence at 2pm.