Brief reflection about limitations and some of their key factors from my experience

Hi Distoweb

Thank you for your reflection which really is deep from the heart. I think the place you have arrived at is awesome!.

The medical community at this stage has a very limited understanding of dystonia. We have much to learn. When it comes to something that one lives with throughout life I think we have a huge amount to learn from people living with movement issues like yourself.

When it comes to understanding differences in brain function the medical model is very impoverished. It is hoped the that behavioural neuroscience may provide insights into the nature of dystonia and eventually ways of improving movement. The traditional model of disease/cure will always be deficient in understanding movement disorders. However I feel we need to proceed with humility in better understanding what people are living with.

My experience of dealing with people with dystonia and other movement disorders is that many span the entire range of intelligence and many are highly intelligent. For example people living with athetoid CP sometimes appear to have exceptional abilities in such areas as maths. So when is a disorder a true disease and when is it more of an extreme variation of the spread on normal experience. A genetic variation is of itself not necessarily a diagnosis - sometimes no more than a tendency in a particular direction. Likewise gene expression can be modified by environmental experiences and by behaviour.

People living with dystonia and other movement disorders often report very negative experiences with the medical community. Let’s be frank: sometimes bordering on abusive treatment. This is somewhere where we need to do a lot better.

So thank you again for your message and for prompting is to think how we could become better practitioners when dealing with people living with dystonia.