Ataxia is not much known about by medical professionals, even those in neuro units. Therefore the information they give us is largely based on their experience of seeing patients presenting with ataxia like symptoms.
The standard balance tests, walk along the corridor, toe to heel walking, standing on one leg then closing eyes, following finger with eye etc will only indicate how well or badly the person is at that moment in time. And only then when compared with the sample of patients seen so far by that professional.
About a week ago I went to Oxford to take part in a small research study for sca6, which I have. The young doctor used all the standard balance tests on me. She then said, "you have a mild case of ataxia!" Compared to her sample of patients I performed well in the standard tests. No surprise to me. I do 30 minutes yoga every morning before breakfast. I have worked to change my gait, by lengthening and widening my stride. I have trained a different part of my brain to speak so the cerebellum interference is reduced (less slurring), I do eye exercises as part of my daily yoga and finally as many of you will know from my posts and my website Ataxiafightback.wordpress.com I am determined to reduce the impact of being an ataxian on my daily enjoyment of life or my plans for the future. I realise my determined optimism may be a little wearying for some of you struggling to come to terms with ataxia.
When first diagnosed in Southampton the neurologist asked me to do the same tests. I failed fairly miserably. So had the doc in Oxford seen this she may have said "you have a severe case of ataxia". Either way she is wrong to qualify the mildness or severity based on one quick set of tests on one day. It's quite likely she was partly saying this to herself, in terms of her research project, and partly out of the naturally human desire to give me the best news possible about a condition she clearly doesn't want herself! If I was someone who paid attention to 'experts' this comment might have caused me to think all the effort I'm expending is unnecessary and to slacken off. After all who wants to work hard if it's not needed!
As a psychotherapist of 25 years practice, I listen beyond the words to find intention and deeper meanings. What her snap diagnosis of 'mildness' has told me is how much difference I am making to how ataxia affects me. In her experience my handling of the balance tests was only related to the condition. Despite having visited my site she discounted my attitude and the work I'm doing to stay healthy. Didn't fit in her model of the world.
Similarly when Alison (wibblywobbly) reported on her eye improvement, her optician could not find a reason (within optical knowledge) for the improvement. Some Opticians and doctors dismiss the Bates method of eye improvement as making no difference. When Bates first shared his findings with his colleagues they roundly denounced him as improving someone's eyesight does not help you sell them more glasses! So a bit like pharmaceutical companies avoid 'cures' and look for something to provide symptomatic relief. That way you ensure the condition never gets better and you have a customer for the rest of their almost pain free life! Excuse my cynicism!
How ataxia affects you up to now has to do with your genetic inheritance, your lifestyle choices and other stuff that has happened to you. How ataxia affects you from today onwards depends entirely on the choices you make today. You may choose, like me to fight back and find ways to preserve your health. You may choose to find ways of seeking help from state, charities, family or by buying gadgets to help. (I have got lots of aids to improve my situation). Or you may feel this is all beyond you. At one time or another we have all been in this "life as I knew it is gone forever" place. You don't have to stay there. How you got to where you are is partly down to you, partly down to luck - both good and bad. How you move forward is entirely up to you. Choose people around you who will help you achieve what you want.
We may have the same or similar condition. Our personal experience of it is just that, personal. Share your ups and downs here. Find someone to buddy up with who also has ataxia. It's okay to ask for help, even if you are a man!