Welcome to Cycle for Dystonia. Come along with me as I cycle across America for dystonia awareness. On July 10, 2010, I will embark on a 2 ½-month trek from Seattle to New York City. This has been a dream of mine for the last five years and now it’s finally here. It has been an amazing journey so far. Let me tell you how it all started.
In 2003, I was struggling with the emotional and physical pain of cervical dystonia. At the time, I joined dystonia organizations to educate myself and become well informed. As I interacted with other people on dystonia web site forums, I realized that not many people, even those in the medical profession, had ever heard of dystonia. People went for years misdiagnosed until they were led to the right neurologist or found their diagnosis on the Web.
Yes, there was fundraising and research going on, but on a small scale compared to many other disorders. I believe that before the public will donate to an organization and support its research or cause they need to know and be educated about it. It’s all about awareness. Not only for the public but also for those undiagnosed people suffering with dystonia.
In 2005, when I was putting the finishing touches on my book, “How Big Are the Pancakes?”, a book about my first cross-country bicycle trip, I wondered if I would ever ride my bike again. It was at this time that God placed on my heart that not only would I ride my bike again, but that I would cycle cross-country again….this time for dystonia awareness. At the time, I didn’t know when or how I would accomplish this, but this purpose gave me hope and new meaning to my life. I knew I had to step out in faith and trust God to guide my steps and lead me in the right direction.
In 2006, I found a wonderful neurologist, who helped reduce my cervical dystonia symptoms with Botox injections. Over the last four years, I have responded well to treatments and have been able to lead a normal life. I am thankful for the second chance I have been given and I am ready to make a difference for dystonia. I am ready to cycle across America and educate the public about dystonia, so that I won’t’ have to hear comments like, “Dystonia, I’ve never hear of it.” “How do you spell that?”