Cerebral Palsy: A Little About My Disability

With my aspirations regarding Paralympic competition it is common and expected for me to field questions regarding my disability and how it affects me in and out of competition. I'm going to try to write about it here for anyone who wants to know more or feels uncomfortable asking me directly. I know that disabilities can be a sensitive issue for many and I will not hold it against you for being shy.

I have become progressively more open about about my disability for several reasons. First, I live with Cerebral Palsy every day, it is as much a part of my life as being 5'9" tall or having a 28" waist. Trying to hide it or ignore will not make it go away, but on the other hand I do not feel the need to broadcast to everyone that I have CP. It has helped shape my outlook on life but it is not the only factor that affects my life. Second, if people with disabilities treat their conditions as a normal, integral part of life then able-bodied people will be more likely to understand and accept disabilities. It will also expedite the medical understanding and treatment of disabilities. Tertiarily, I feel that as a person with Paralympic aspirations I have chosen to put my disability on display for all to see. I am going to be representing this country so it is my responsibility to let the people I am representing know why I have this opportunity.

What the heck is Cerebral Palsy (CP)? CP is a blanket term for a group of disabilities caused by brain damage. It usually occurs prior to birth, by complications during birth, or by trauma during infancy. CP is non-progressive and non-degenerative although the secondary effects can progress rapidly during adulthood. CP is classified by local and affect of the disability.

My disability is classified as Spastic Hemiplegia. Spastic meaning that the affected areas do not receive signals from the brain as quickly and the muscles in that area tend to be tight. Hemiplegia means I am only affected on one side, in my case that is my left limbs.

I arrived in the winter of 1986, I was born a healthy and perfect little boy (though my mother and ex-girlfriends may disagree with the perfect part). When I was 4 months old I became sick and was prescribed penicillin, this was to be the decision that would forever my life. I had a severe allergic reaction to the antibiotic and became dangerously dehydrated. When I was seen in the ER it took 26 (yes, twenty six on a 4 month old) needle pricks to draw enough blood for testing. Then I had a stroke. A few years later I was diagnosed with Cerebral Palsy, apparently I was displaying impaired motor functions such as dragging my left foot and an inability to pick things up with my left hand. I did physical therapy for a while, but I don't remember anything I've recounted to this point.

Fast forward to age 12 when I had my first surgery at the Shriners Hospital in Greenville, SC. I was fortunate enough to attend Church with a few men involved with the Shriners and they introduced me to the Shriners Hospital system. After countless trips to Greenville for initial overviews and pre-ops I had a muscle release and 2 tendon transfers in my left wrist. Then there were another set of countless trips for post-ops, rehab, and therapy. I gained a tremendous amount of functionality in my left hand after that operation. 4 years later I received a botox injection in my arm to relax the spastic muscles in the my arm. Intense therapy left me with even more use of my left hand. I'd like to pause now and thank my Mom for driving me on all of those countless trips to Greenville, I know it wasn't easy with the other kids and everything she had to do. And while I'm on a roll I have to thank the Shriners for fixing me at no cost to my family. You made my life better, and I mean that with the deepest sincerity.

That brings us to the present and how having Cerebral Palsy affects my life and athletic pursuits. My disability is more severe and noticeable in my left arm. There is a permanent bend in my elbow that does not allow me to extend it all the way, my left hand is smaller than my right hand and does not work as well. It is weaker and slower to respond to brain commands. I find that my fine motor control is more affected than gross motor control. In real life, I type with one hand and do a lot of other things with one hand. Picking things up can be awkward. On the bike I have all shifting duties handled on the right side. I use a bar-end shifter to control the front derailleur and I have rerouted the brake cables so my right hand controls the front brake where all the stopping power is.

My left leg is smaller than my right leg and is putting out a smaller amount of power than my right leg. I also have issues with ankle flexibility and leg suppleness. When you see me spinning out at 160+ RPMs it is the result of a lot of practice at high RPMs. Skills come hard and leave quickly with my left limbs, but I know that and train with that in mind. I also have issues with the cold increasing the spasticity of my muscles so I tend to ride slower and slightly less smooth in my pedal stroke when the mercury drops.

My Paralympic classification is CP4 which is the category for the least-disabled people affected by CP, stroke, and brain damage.

I think that is a pretty good summary of my disability, and if you have any questions feel free to post them in a comment or ask me in person.