Living with Dystonia

Living with Dystonia

It’s nice to feel that we are in control. But for anyone with dystonia, in every waking minute there will be a part of your body that is not in your control. Dystonia can affect one or many parts of the body. It can prevent your eyes from opening, your vocal chords from letting you speak, your hands from writing, your legs from keeping you upright, your head from facing forward.

Dystonia is a neurological movement disorder that causes abnormal movement or posture due to incorrect messages from the brain. It is not a well-known movement disorder but is actually more common than multiple sclerosis. It can also be a symptom for sufferers of conditions such as Parkinson’s disease and cerebral palsy. I was interested to discover recently that dystonia is a recognised condition in the Paralympic Games.

At the time of my diagnosis with cervical dystonia (dystonia of the neck), I was the principal bassoonist with the Adelaide Symphony Orchestra, had performed as a soloist on TV and radio both in Australia and overseas, had won prizes in competitions, and was active as a music teacher. It was a devastating loss to be told I had a permanent disorder and would most likely never play my instrument again.

I still remember those days when I could barely walk or lift myself off the bed due to strong contractions in my neck that turned my head right around to the side and up.

The sensation of having dystonia in your neck is like a constant tug of war, with the antagonist (opposing) muscles continually contracting. Some minor temporary relief can sometimes be gained by touching parts of the face or neck, and for this reason I often cradle my head in one or both hands.

Due to the effects of Dystonia I had to give up my music career completely and find a new life in the world of administration. Dystonia often affects people’s ability to work and at the moment I feel grateful that I am able to work at all. I’m currently suffering a relapse of symptoms after initially making very good progress in treatment, and it has been difficult to go through it all again. I have learnt that the lifelong path of Dystonia is one of constant ups and downs.

Being part of networks such as my Staff with Disability Network in my current workplace has made me feel that I’m not alone in dealing with a big barrier on a daily basis. The Network is a great initiative that recognises diversity and supports people with disabilities to perform at their best. I also enjoy being part of the Australian Dystonia Support Group on Facebook where I can talk to other people who also suffer from dystonia.

Additonal Information

A short film ‘Dystonia’ was released in 2018 about Margot’s life, a highly successful musician who was diagnosed with Cervical Dystonia and had to face her devastating fate. Written and directed by Peter Chiverton. Starring Lydia Fay, Nathan Bolton and Charlotte Jakubowski. Click play to view film! 

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