Margot’s story: Living with Dystonia

Brain Foundation: Can you tell us a bit about your story? What was your life like before you were diagnosed with dystonia, and what was the process of diagnosis like?

Margot Chiverton: As a musician in a high-performance environment, when I started to feel strange tension in my neck muscles, I assumed it was a psychological problem that I needed to solve. I tried every form of relaxation and psychological help and became quite competent at managing performance anxiety, but there was no improvement in the sensations in my neck. It impacted my performance as I needed very fine muscle control. This was terrifying when I performed with prominent musicians like Luciano Pavarotti or played live radio broadcasts. After nine years of struggle, during a particularly heavy playing period, it became clear that my head was now twisting all the way around to my shoulder. Shortly after this, the head twisting also occurred when I was away from my instrument. Until that point, it had only ever occurred while playing.

Then followed a string of appointments to seek a diagnosis, including a GP who treated me for anxiety and psychoanalysed my past. The GP told me the head twisting was voluntary and was a response to my thoughts. Luckily my husband encouraged me to see a physiotherapist, who tried all her treatments, which failed and made me worse, but she knew this meant I needed to see a neurologist. The neurologist finally diagnosed me with cervical dystonia, an involuntary movement disorder caused by incorrect signals from the brain. This was a great relief to know what was happening, although he told me I might not ever play music again.

BF: How did dystonia affect your life?

MC: After a year of rehabilitation, I managed an initial return to work, and felt so free and in love with playing music, as my symptoms were finally being treated correctly. But eventually the symptoms became severe again, and I had to give up my life as a musician.

I needed to learn how to live with limitations on my physical ability and with a condition that can be socially embarrassing at times. My ability to drive and walk was affected. The hardest thing was accepting that this is one disorder I can’t solve. It won’t go away no matter how many alternative treatments or healthy living changes I try.

BF: How did you cope with these changes?

MC: Starting at a very low level, my confidence gradually grew through joining a public speaking group, and eventual success in finding a supportive workplace in administration. The social support from the Australian Dystonia Support Group on Facebook was a major help, and from there I have met others with dystonia and now organise lunch catch ups. After many years, I finally found the inner peace to sell my instrument. My husband shared my story through a fiction book and short film, which took me on quite a journey, and I’m now in a place of contentment and acceptance. My husband hopes that someday his feature film on my story will be made, in order to spread dystonia awareness.

His book is available at: Life and Music by Monty Raymond and the film at: Dystonia by Peter along with a subtitled version: Dystonia by Peter (with subtitles).

BF: Are there any treatments or therapies available for dystonia?

MC: Botox injections and neuro-physiotherapy have been the most helpful treatments for me. Medications were not recommended in my case due to the side effects, although deep brain stimulation surgery is something I could consider.

BF: What did you wish people knew about dystonia?

MC: I wish people knew the name, dystonia, and that there is a condition that causes your head to start twisting to the side. My whole body becomes compromised by the effort of reducing the head twist, even when it’s not always visible.

I can’t express myself with body language the way I mean to, and I can look shy, neurotic and unassertive, even when I don’t feel like that.

I have this idea that vision loss associations could provide aids or training to dystonia patients, in case it helps with the lack of full vision to the side.

I would love researchers to spend time with me and other patients discovering in greater detail what types of brain use worsen the symptoms. It feels like I have an insider’s knowledge from years of observation that could lead to better understanding and treatment for this under-researched disorder.