Disease only slight bump in the road

Michael Chamberlain has familial spastic paraparesis, a rare form of muscular dystrophy, but still finds a way to participate in sports, such as biking and skiing.

As Henry David Thoreau once wrote, “However mean your life is, meet it and live it.”

Michael Chamberlain has chosen to meet and live with his degenerative muscle disease, which has been only a slight bump on his road toward success.

The 21-year-old Denver native has been dealing with familial spastic paraparesis, a rare form of muscular dystrophy, and knows the importance of staying positive and overcoming the setback.

“Like most people with a disorder there are days when I’m down on myself and I feel it may affect me throughout the day,” said Chamberlain, “But I always talk myself up and keep my spirits high. I know that other people might be worse off.”

FSP essentially attacks the spinal cord and creates degeneration of the spinal cord fibers that supply messages to the legs. The loss of leg use becomes imminent.

According to Dr. John Fink from the Department of Neurology at the University of Michigan, FSP creates a daily struggle for most patients, who find it increasingly difficult to walk with the loss of strength and mobility, and some days walking isn’t an option.

This loss of mobility can be devastating to any person, and is especially cruel for Chamberlain, who centers his world around sports. The senior mass communications major at Colorado Mesa University has turned his loss into gain, and is currently the sports director for KMSA Radio with dreams of becoming a broadcaster.

“I’m a huge sports enthusiast but obviously I have a hard time actually competing and playing sports. I want to broadcast sports on the radio or TV,” said Chamberlain, “I’ve also thought about moving somewhere warm because my joints freeze up easily in this cold climate. Whatever I do, I want it to keep me around sports — it’s my passion.”

Despite having FSP, Chamberlain remains as active as possible. Chamberlain frequently rides an arm-powered tricycle. He rode last summer in the annual Courage Classic which benefits Denver Children’s Hospital.

While skiing, Chamberlain rests in a seat with his legs strapped on the mono-ski, using poles to keep balance.

“I really strive to not let FSP hold me back. I want to do everything I can to the fullest,” said Chamberlain. “Skiing is such a fun and different experience. The most intimidating thing is learning how the poles interact with the ski and balance, but skiing and biking allow me to be active.”

Chamberlain also drives, and his truck is fully equipped with hand controls. He can’t push the accelerator or brakes, but he uses metal bars attached to the floorboard, pushing down for gas and pulling for the brakes.

For frequent transportation, Chamberlain rides his other set of wheels—a Segway — a dual-wheeled device that allows the driver to stand while driving. He didn’t like sitting in a wheelchair because he was constantly looking up at his friends.

“The Segway has made a huge difference with my mobility. I try to walk most of the time if I’m close to class, but if I have to get around different places quickly I use the Segway,” said Chamberlain. “I like walking because it stretches my legs, but usually the Segway helps save my legs and the fatigue factor.”

Although Chamberlain is like any other student or member of the community, people treat him differently due to his appearance.

“I’m very subconscious when it comes to meeting new people and dating. Most people see the outside of me and they look at my legs and how I walk. That’s all they think about,” said Chamberlain. “Most people don’t see my personality and don’t take the time to get to know me. It hurts.”

Chamberlain remains positive and continues to accomplish his goals — with graduation and a degree next on his list.

He can teach everyone a lesson with his attitude toward life, and shows that optimism coupled with hard work can make you happy, no matter what you’re up against.


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