The 9th June is Transverse Myelitis Awareness day, and this year it was celebrated at Surrey Hills Rehab in Smithbrook Kilns which is run by Kim Wilson, with tea, talk and lots of cake.
TM is a rare disease of the central nervous system involving inflammation of the spinal cord. This results in messages from the brain to the body being blocked, causing sensory and motor impairment. Sufferers can experience numbness, tingling, pain, paralysis, spasticity, weakness, fatigue and problems with bowel, bladder and sexual dysfunction.
Only about 300 people in the UK are affected each year, across all age ranges. Sometimes onset follows an illness but more often the cause is unknown.
There is no cure, but some people make a full or partial recovery, and symptoms can be alleviated and mobility improved by physiotherapy and exercise, preferably from a specialist neuro physiotherapist.
At the meeting on 9th June there were 23 of us – all people living with TM and their families and carers. Barbara Babcock, who has TM and who has chaired the TM Society, gave a presentation on ‘Living well with TM’, followed by questions. This was enlightening and very was well received.
When you have a rare illness you can feel very isolated, so one of the great joys of the day was to meet other TM sufferers and their families and to share experiences. Many GPs know little if anything about TM, so it was very good to hear how others coped with their condition, and what and who had been helpful to them.
Kim Wilson at Surrey Hills Rehab has experience and expertise in helping people with TM and other neurological conditions, and is accredited by the TM Society as part of their NeuroPhysio bursary scheme.
Kim and her team see people individually at their studio or in their own home. They also run special exercise groups such as Pilates, Yoga and Stronger for Longer which are suitable for, and helpful to, people with TM.
We are in the process of forming a new support group for people with TM in the Surrey and Sussex area. We have planned another TM meeting at Smithbrook Kilns on 6th October. Kim will be talking about the benefits of specialist physiotherapy, there will be time to mingle and chat, and there will be cake!
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I myself have benefitted from neuro physiotherapy, much of it from Kim; 7 years ago I spent 6 weeks in hospital more or less paralysed following the onset of Transverse Myelitis. This was followed by 2 months of residential neuro rehab. Now I can walk short distances with sticks or a walking frame, drive, ride a horse and terrorise the people of Cranleigh on my mobility scooter.
Written by Sally Jones