Dystonia
By Swaydeer © 2005

Living in a world of pain.
Living with uncertainty of what tomorrow will bring.
There is no cure for this I know.
Depression sometimes plays a part.
For some of us trying to cope.
I seldom find comfort.
So seldom do I sleep.
But this I know, I am not alone,
there are many who suffer.
This disease is not to be taken lightly,
for it has taken its toll on me.
It is a daily struggle.
It is a constant battle.
There is also strength and courage.
There is a hope.
A hope, that one-day there will be a cure.

I’ve Come A Long Way 
By Chloe Belisle, Area Contact

How can one know your suffering when you’re not in there shoes? It is simple, you can’t. Only those who suffer truly understand what it is like.

I am one who suffers from this disorder. I have since I’ve been a child. There are so many things I see now that I did not see then.

I started to notice my head shaking when I was a young teenager. The pain and the tremors were uncontrollable, after a while my head started to pull to the left and up and it would stay that way. I often suffered from depression, falling to my knees when I got home from school in the corner of my room crying wondering what was happening to me.

The worse the symptoms became the more I retreated inside myself. I would stay in my room and not interact with many people. I suffered in silence, telling no one what was going on. I thought it was all in my mind and I could make the shaking stop.

I was 17 years when my family doctor asked, “Why are you holding you head?” When I did not reply, he asked me to remove my hands and he saw the uncontrollable shaking. Tests soon followed and a name was given to what I had—Spasmodic Torticollis. I did not fully comprehend what I was up against; perhaps I was too young. 

Treatment with Botox was recommended, which really helped with the symptoms. However, it was very expensive and I eventually had to stop and fall back into full-blown dystonia. At age 28, I saw another neurologist for Botox treatment at the Jewish General Hospital and I have been with him since then. Botox has made my life easier.

Today I am 43 years old. Now my hands shake and I have trouble writing. I have mycolonic jerks in my body, which we are looking into. I have constant pain in my back and at times it seems too much to take. But life goes on. 

Thanks to medical research and a wonderful neurologist I began to understand exactly what I was dealing with. Dystonia has changed my life forever. It has been a rough road through denial, anger, the “why me” stage. I have learned that Dystonia is a part of me, but it does not define me. Through strength and courage I fought my way to acceptance. 

Through the many changes, I’ve learned to adapt. I had to sell my motorcycle, as it was getting too dangerous for me to ride. I can’t drive when I am due for my Botox and I cannot hold a camera any more so I use tripods and a camera stick for my photography. 

It is not easy living with Dystonia but I will not let it stop me from living my life to the best of my ability. I decorate and paint my house. I am an amateur wildlife photographer. I write poetry and short stories as a hobby and as a way of expressing myself. I also do various crafts. My website (Swaydeer © 2005), is my creation, with some of help from a wonderful friend. Having dystonia at times is challenging, but I am always up for a challenge. 

Too Many of us who suffer from this disease, suffer alone. This is where the Dystonia Medical Research Foundation Canada comes in. This is why I am proud to play a part in the Foundation as an Area Contact reaching out to those who have Dystonia so they are not alone, and so that they know that there is someone that truly understands what it is like to have Dystonia. The Canadian Foundation helps to promote awareness and raise funds so one day we will find a cure. And it provides patient support: being an Area Contact is just one more way the Foundation seeks to support Dystonia-affected Canadians. 

I’ve come a long way. You can, too. Let’s do it together.

Dystonia Links:

Dysonia Medical Research Foundation

Life in Motion

WE Move: Worldwide Education and Awareness for Movement Disorders

MDVU.ORG

Spasmodic Torticollis/Dystonia, Inc.

 

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