Saturday, November 01, 2008

Kyle's Story

“Little did I know this was just the beginning and this disease would lead me to things beyond my imagination.”

For the first half of my life I had no idea that I had Friedreich’s Ataxia. I played sports and carried on just like other kids. When I was thirteen, watching me play baseball, my Dad noticed that something was wrong. In the beginning, my family simply called it clumsiness, but as my coordination and muscle control continued to deteriorate, we started looking for answers. After a year of searching, my family and I were unsettled with the diagnosis of FA not knowing what this disease would bring to our lives.

Many Ataxians are all too familiar with that helpless feeling, the “there’s nothing we can do my life is over” feeling. Two and a half years ago I had that feeling when FA had progressed to the point that it was unsafe for me to continue riding my bike. I was quite frustrated and I figured this is the beginning of the end. Little did I know this was just the beginning and this disease would lead me to things beyond my imagination. I found a trike and started riding. I fell in love with the freedom that came with it. I decided I wanted to do more. I wanted to do something huge that would be life changing for me and that would be an inspiration to all suffering from the effects of Ataxia. So teamed with my family and some close friends we made a 2,500 mile journey from San Diego to Memphis on bike to the National Ataxia Foundation Annual Membership Meeting. We had so much fun on that trip we decided to do it again the following year this time Sacramento to Vegas. Our Vegas trip was amazing because many people came together to participate and fight this disease.

Currently, there is no treatment or cure for Friedreich’s Ataxia. However, I find that strenuous exercise is the best treatment for me. Cycling boosts my physical, mental and emotional strength. Although Ataxia is slowly impairing my physical ability, I have never felt better than I do after a long ride. Cycling is my therapy. When I feel frustrated I can crank out 30 or 40 miles leaving all my frustration on the bike trail. Cycling has boosted my confidence. Cycling gives me a platform to address Ataxia with friends and coworkers. I am proud of my ability instead of ashamed of my disability.

I have found that life is not over and there is much I can do. I am confident that the doctors and researchers are doing all they can to find a treatment or a cure. Until we find a cure, I plan to have fun staying healthy and active as I fight this disease.


Anonymous said...

"Cycling is my therapy" ;)
"I started ride a trike. Fell in love with the FREEDOM that came with it. Want to do more!" ;)
I could not have said it any better - my huge, life changing and inspiration is to ride with you!

jpearl said...

I have been riding a recumbent bike for about 6 years. I have cerebellar ataxia so I can ride better than I can walk, such freedom!! I ride with my two dogs, I have a service dog patch for my Lab and I have taken him to the bank and he helps me walk in.

Anonymous said...

this is SO inspiring. i can't wait for the ride from portland to seattle- even though i might only go for part. not that i have a trike or have ever ridden one, but i'm for sure going.
sophia s.

Vickie Musni said...

Love what you share hear...can't wait to hear more tomorrow at the ADJA meeting in Reno!

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