Inspiring People who have Dystonia

It is Thanksgiving in my country as I write this. Those of us with dystonia would be hard pressed to claim we are grateful for it.

But in this journey I can’t help but be grateful for the doctors who research it, and the family and friends who are so helpful through it. I am particularly amazed and grateful for the courageous few fellow patients who have gone public, admitting they have it. The writers of books who chronicled their journey, many of whom are now online friends of mine are dear to my heart by now. I think of Cher Tannenbaum, Beka Serdans, Rev. Mike Beck, Brenda Currey Lewis, Carmine Petrangelo. But there are others too.

In news reports and Youtube videos we see their courage. When I am sad with this condition, their image pops back into my mind and I feel stronger again. I have been able to contact a few of them, laughed with Marcellin Chiasson at his wonderful story.

Their particular journeys are possibly unique and none of their treatment experiences is being endorsed here or recommended for the website. However their courage stands out for me in these publicly available online reports. Here are a few of my inspirations: (play the videos or click the links to view):

In 1996 a 50 year old Nova Scotia legal assistant, Marcellin Chiasson, began to notice he was blinking excessively. Within six months his eyes were clamping shut all the time and though his vision was fine, he was now functionally blind. He had to quit his job, consulted numerous doctors in two provinces and after two years got a diagnosis – dystonia. However he had noticed that his eyelids suddenly opened if he played his fiddle or mandolin and clamped shut again the moment he stopped. They did not open when he strummed his guitar. They also for some reason opened the time he stood at the back of a church, very intent on not tripping as he walked his daughter down the aisle at her wedding. For those brief intervals, he could see fine. In 1998 he went to Ottawa for a successful myectomy, surgery on the eyelid muscles above the eyebrows. Now, though he still has dystonia, his eyes can open. He was interviewed on ATV Evening News about his journey. Here he is playing mandolin.

In New Jersey, runner Justine Galloway ran a great New York marathon but started to have problems with her leg. Eventually she was diagnosed with runner’s dystonia and could not run forward efficiently at all. However she discovered she could still run up stairs or backwards. Ignoring what others might think, she practised running backwards. and has now competed in several marathons. In 2015 she set a Guinness book record for fastest half marathon run backwards.

Pianist Akiko Tsukamoto Trush in about 2004 noticed as she practised that her right thumb was folding in and she could no longer perform some passages. Over the course of a few weeks the condition moved rapidly. Her thumb folded in so she could no longer easily write with a pen, press enter on a keyboard, wave good-bye, shake hands or shampoo her hair. She found however that when she swung her arms by her side, the thumb was loose and did not fold in. It was this secret that helped her figure out a gradual way to deal with the condition.

Vocal cord dystonia often hits those who use their voices a lot. They may be cattle auctioneers, radio or TV talk reporters, announcers, courtroom lawyers. One used old tapes to create a text-to-voice simulator so he could still speak and continue his career.

Here are examples of reporters with dystonia:

Diane Rehm – radio show host US

Jamie Dupree – 30 year reporter Capitol Hill

If the hand muscles are affected, this seems to happen more for seamstresses, typists, stenographers, even cake decorators, artists. Here’s cartoonist Scott Adams:

Musicians affected are often the particularly adept, whose practise is intense. Dystonia has affected guitarists, violinists, and pianists in one finger, or several fingers. Some have had to refinger the pieces of music they play or change hands, change instruments or sometimes give up their careers.

People who play wind instruments may develop mouth and jaw dystonia and have trouble making an embouchure. Margot Chiverton in Australia had to give up her very successful orchestral career as a bassoonist when she developed dystonia. Her husband has made a video about her journey: