Clare's interview
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How did all start?
I felt an odd tingling and pins and needles down my right thigh one evening. That leg became weak. The following morning the other leg was also involved and I could hardly walk. We went straight to hopital
Do you already have a diagnosis? How long did it take you to get it?
Transverse Myelitis diagnosed after 4 or 5 days in hospital, having eliminated a slipped disc, spinal stroke, tumour
For what medical specialties have you been treated? What has been the most useful specialty for your?
In the past, a slipped disc, cancer of the breast, bilateral sub-dural haematomas. It was the Neurologists who quickly identified the problem
What has been the most useful thing for you so far?
Plenty of intensive physiotherapy in a large specialist 'Centre de Reeducation' in the town where I live in South West France, starting as an inpatient for two weeks and then, over the following 5 weeks, going 3x then 2x per week. By then I could walk unaided for short distances.
What have been your biggest difficulties?
At first, relearning to walk, getting my balance back and confidence in moving around. Now getting used to the altered sensations in my pelvis, legs and feet, and the fact that, if they are changing, it is very slow.
How has your social and family environment reacted? Have your social or family relationships changed?
I am lucky enough to have a very supportive husband who has encouraged me all the way. My children and friends also try to understand and help. So I can still do most of the things I want to do.
What things have you stopped doing?
I can no longer ski and can't go for long walks in the mountains
What do you think about the future?
I hope that this was a one-off happening and that it will not recur. So I am living for each day, making sure I take enough exercise and rest enough in between. I think I should be able to continue to do most of the things I want to do
So far, which years have been the best years in your life? What have you done during them?
Probably my forties, when my children were becoming independent and I started to play the cello and did a university degree in music
What would you like to do if you didn’t have your condition?
Go on more ambitious holidays which involve standing or walking a lot, to visit buildings and museums in towns and cities which I cannot manage now. I'd love my legs to feel normal again
If you had to describe your life in a sentence, what would it be?
A good life making the most of all the advantages I have, and being aware of how lucky I have been compared to many others with TM
Finally, what advice would you give to a person in a similar situation?
Get to see a good neurologist and physiotherapist and keep exercising to teach your nerves to make your muscles do more of what you want them to do. Most important is to keep positive, optimistic and and make the most of what you have.
