Poole and Bournemouth Transverse Myelitis Support Group
Minutes of meeting 28th April 2007
Held at St George’s Church Hall, Oakdale, Poole
Attendees: Andrew Berry, Teresa Bryant, Carol Burnett, Frank Devine, Lorraine Exley, Barrie & Barbara Houston, Sue Hyatt, Mark Jevicevic, Connie & Phil King, Peter Poll, Gill & Alan Rowe, Barbara Sadler, Katie Steadman, Beverley Tankard, Olivia Thomas, Yvonne Trapp, Graham & June Ward, Tim Wilson, Robin & Valerie Young.
Apologies received: Hilary Barefoot, Olga Cowden, Lyn Graham, Lew Grey, Louise Higgs, Malcolm Plested, Judy Stanford and John & Rita Withey,
The meeting opened at 2p.m. Teresa welcomed everyone. We had a new member – Olivia from Yeovil. She developed TM in February, and is making a good recovery. She received physio almost immediately whilst in hospital, with a follow up between once and twice a week for 3 weeks following.
Regarding fundraising, it was agreed that subs would be £1, and a raffle will still continue, but with no more than 10 prizes. Val Young has brought her cards along to sell again, with proceeds going to the group.
Sue Hyatt, the treasurer, informed us that a bank account was now open. £100 has been placed in savers’ account, and £76 in the Treasurer’s Account. A generous gift has been made by Malcolm Plested following the death of his mother. The group was asked for ideas of how to use the money. A book on TM has been ordered. A possibility will be to purchase T-shirts.
Katie Steadman had run the Reading Half-marathon. She said she had enjoyed it, and her brother had run as well. Unfortunately she sustained an ankle injury about 8 miles in, but this did not deter her from completing! She completed the run in 2 hours 18 minutes, ending up at the Madejski Stadium. Money can be donated up to 3 months after the event, so donations can still be made on-line. She now hopes to run the Bristol Marathon on 9th September. So far she and her brother have raised £1,200. Well done to you both.
The saga with the Osborne Centre continues. Apparently the Centre doesn’t have particularly strong links with the MS Society. Perhaps we should be looking to link with the Society. Gill brought information regarding the Winchester group – which is open to TM members. Teresa is going to persevere.
Doug Kerr, a TM expert from Johns Hopkins Center is due to come to London October 13th to head a one day conference. He will be joined by a neurologist – Gavin Giovannoni, and a neuro rehab consultant Diane Playford,. When asked who from our group thought they would like to attend, all present said they would. Discussion followed regarding group transport – suggestions made were a community bus, a coach or the train.
The next meeting for the 28th July will be held at the usual venue. There will be no guest speakers on that occasion. However, the meeting following that, October 27th, will have Val Mitchell coming to talk about carers support.
Teresa asked if anyone would like to take on the role of social secretary, could they please let her know.
Yvonne’s son is studying graphic design, and has taken on TM as his topic. He has produced posters, worked on the logo and presented the TM leaflet in a more attractive, colourful way. His work is extremely impressive, and some work from his portfolio is to be sent to the London group. The large designs we were shown were really high quality.
Yvonne also brought along information she had gathered from an MS meeting. These included a paper on stem cell research, as well as leaflets for various activities, including Sailability and sailing on the Knoticat. This boat goes out daily from Cobbs Quay, Poole, and carries 8-9 people, including some wheelchairs. If anyone is interested in sailing the tall ships, apparently funding is available.
Bethan Edwards, a neuro physio from Poole came to speak to the group. When asked why a neuro physio is important with TM, she explained that they have a greater understanding of the brain and spinal damage on the body. They have the same training initially as other physios, but they then specialise. They have links with the neuro consultants. Their task is to empower and educate the patients to manage their symptoms in order to enable independent living. When working with a patient, the neuro physio will check for weakness, after which there is a cycle of evaluating, treating, and re-evaluating to see what effect the treatment has had. During the acute stage, symptoms are managed – e.g. fatigue, how much pain can be tolerated. The treatment varies according to each patient.
Regarding longer term treatment, Bethan told us that a lot of the difficulties are down to funding. She also pointed out that there is insufficient capacity, as new cases are diagnosed each year. This means that obviously the number of sufferers increases. However, ideally a change in condition would benefit from a short, sharp burst of physio. A review system would be of benefit, but that is not yet in place. This could ensure that patients maintain a functional lifestyle. It is possible to go through the GP for a referral to a gym under the GP Prescription Scheme for exercise. A fitness instructor is then allocated to work with the individual. Access to transport can be a hurdle. Some patients benefit from attending Woodlands, which is Community based. It has a multidisciplinary team, ensuring a whole team approach, including helping with home environment issues. Treatment is usually offered as a 6 week block. The GP or District Nurse can make referrals directly to the neuro physio dept when there is a change for the worse in physical capabilities.
Most neuro physios should understand TM, as they have specialised in neurological diseases including stroke, MS, Parkinson’s etc. However, as it is a rare condition, the neuro physio may not have had direct experience. They will, of course, look up relevant information, but will use skills practised in other neurological conditions.
Exercise can easily be incorporated into daily activities, such as housework, gardening, walking the dog, using the stairs instead of the lift. Other suggestions made were Nordic Walking, water-based exercise, cross trainers. It was emphasised how important stretching down after exercise is – at least 30 seconds for each muscle group. Flexibility is important – a range of movement should be made, along with balance and core stability – Pilates is good for that. One needs to be careful of ‘triggers’ to nerve responses – work out what causes it and then be careful.
It is important to monitor responses to exercise, and build up to new exercise/activity. If the response is favourable, then it is alright to continue, but if not, then drop back and increase more gradually.
Regarding improvement of function, this needs to be maintained, adding little by little each day. Small improvements need noting. Low intensity/high repetition exercises are good functional activities. They will improve muscle strength and function.
Fatigue is often a major hurdle. Fatigue from muscle disuse requires careful exercising. It needs to be constantly maintained, which will break the cycle. However, it needs sustaining without dips and troughs. The need to pace the day is important – pacing carefully will reduce fatigue.
Core stability exercises benefit everyone. Val has offered to photocopy some low level exercises for members. It is important when exercising core stability; the correct muscle group must be activated. The corset muscle should be working all the time _ Bethan showed the group where it is. There is a book produced by the MS society regarding exercises, and passive movements references can be found on their website.
When asked if sports injuries take longer to heal, Bethan thought not – soft tissue injuries usually need 6 weeks to heal. However neural responses might make a difference. Katie will have to be patient for another couple of weeks!
The subject of FES then came up. At present, reviews are only held at Odstock. The purpose of Functional Electrical Stimulation is to send impulses to muscles to make them work. For example, with drop foot, if the nerve is intact, but the message is not getting through, then the nerve can be stimulated and the muscle will pick up the foot. Orthotics can be placed in shoes to realign the bony structure. If these are used, it is recommended to continue using them.
Many thanks to Bethan for an extremely helpful talk. To show our appreciation for giving up her time, she was presented with flowers.
Meeting closed at 4pm
Next meeting Saturday 28th July
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