Sunday, 14 May 2017
Something funny has been going on with my legs for some years and was becoming increasingly obvious to others, I can't run, I fall over occasionally, I lose balance if I look behind me, I am increasingly jumpy, and I was fed up with not knowing, doctors didn't know what it was. and then I was asked at one appointment,
' Do you want to know you future?'
It sounded like some oracle you have paid to consult in a fairground, not a sober request from a doctor in a day clinic in a busy hospital. I was fed up with MRI scans X-rays electrical nerve tests blood tests and doctors staring into computer screens and telling me monotonously that 'they couldn't find what was wrong with you Mr Stone.'
So I wanted to know. I told them to go ahead.
A few weeks later the results came back and I was given an appointment with a professor at the National Hospital for Neurology where I was told I had a slowly developing incurable neurological condition SCA17 (Spino Cerebral Ataxia). At first it was great to know, get an Ataxia membership card get my pack through the post, see a DVD of other people walking funny like me...
But then I realised what I had. I read an article where the life expectancy was talked about : ' people with sca17 rarely live beyond 60. I am 58 . I can look forward to losing all sensation and use of my limbs, slobber, slur my speech, have uncontrollable spasms.... Lovely! But the doctor said my case was mild and they really didn't know when it would develop- it could be soon or it could be 25 years off, and they might find a cure meanwhile. There is a lot of research happening. This disease has a sense of humour it really is a bit of a tease. The joke of the disease is:
I don't know if It will develop this year or when I am 75. Right now it is obvious in my walk, but not in my my hand eye co-ordination which is good. It is not obvious in my speech - it isn't slow and slurred. No difference really! just don't want to waste time now- its precious
but I somethings are clear - My diagnosis 'a very rare form of autosomal dominant cerebellar ataxia' I am scared, I wobble, I fall occasionally, I have withdrawn from the world and become extremely careful.(If you want to know more go to ataxia.org or ataxia.org uk and there are videos on you tube, or talk to me.)
Although its hard to accept, I think its better to know about it. If I don't, I'll worry, and better to worry knowing, than worry in a cloud of unknowing. I've done that for years-I have known something's wrong but I don't know what',meanwhile I got on with life and found a precarious balance that enabled me to survive. If you know, you can do something about it. It is, and increasingly will be, a part of my life now, so I can cannot deny it. Some say denial is a good thing- hmm maybe partially, but I cannot deny the diagnosis, but I will deny the prognosis thats my line. I intend to eat well and stay fit,do lots of body work weave it into my work, have always been drawn to music and breath and movement, balance and its relation to healing, now I have avested interest. I want to be closer and helpful to others who have ataxia. I am currently in good health and able to do everything but run and jump, I am seeeing a physio and keeping fit and just have to get on.
I hope ataxia helps me to become a better person and accept and work within my limitations. As famous doctor Osler said, quoted by Ollie Sacks said, 'ask not what disease the person has but what kind of person the disease has'. Only time will tell how I live with it. It is now part of me I hope I can learn to live well with it.