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Living with Parkinson’s, 100 miles at a time

By Charmaine Smith-Miles, www.independentmail.com

ANDERSON — Steve Quam tries not to focus on the 4,000 miles of pedaling ahead of him as he prepares to ride his bike from one U.S. coast to another.

He’s prepared for the snow that he could run into in the mountains out west. He has the right equipment with him in case he gets lost, and he will pack his small trailer with precision so that he has only the absolute necessities for his journey.

He’s not worrying about the vastness of it all.

He is 66 years old and has Parkinson’s disease, diagnosed four years ago. Because of the disease, the right side of his body sometimes shakes uncontrollably, and Quam has to think through simple tasks like tying his shoes.

On April 15, he plans to set off from Edisto Island to pedal his bicycle all the way to Newport, Ore. — his third cross-country trip since his diagnosis.

“When I tried to pull me and my trailer over the Cascade Mountains last time, I was about to give up,” Quam said. “Then I started thinking about it as 100 miles at a time. Four thousand miles seems overwhelming. But 100 miles — I can do that.”

That attitude pulled him through that first bicycle journey to Oregon in 2010.

It helped again on a 16,140-mile motorcycle trip from Anderson to Fairbanks, Alaska, in 2011 and a one-day bicycle trek across the Copper Triangle, a 78-mile loop in Colorado that reaches an elevation of 11,318 feet, the same year.

It also helps him live with Parkinson’s every day.

Quam is a semiretired music therapist who specializes in helping the deaf and those who are dealing with a mental illness.

He retired around the same time his disease was diagnosed. Some of the stresses related to the work were not good for his health, he said. But he has not taken his retirement or his diagnosis as a cue to quit.

He still works part time at the McKinney House in Mauldin where he was once the director. He still plays a variety of instruments and will have a flute with him on his upcoming journey.

Quam said his Parkinson’s diagnosis helped him make sense of how he’d been feeling.

He explains in a soft, calming voice. His father had Parkinson’s, and so did his paternal grandfather and his father’s aunt. In 2008, Quam noticed changes in his own health.

“All along, I assumed I would be diagnosed because it was in my family,” Quam said. “It was more of a relief that they could put a label on the things I was already experiencing.”

Quam watched as the disease changed his father, making it impossible for him to recognize his own daughter. He saw his father die in 2003 at age 88 after a seven-year battle with the disease — long before Quam’s mother, who will turn 100 this year. Quam has also met others who have dealt with the illness and heard their stories.

He said he knows the disease can lead to depression, cause forgetfulness, and make him lose control of muscle movements and the ability to swallow. Some people with the disease act out dreams as if they are real.

He’s already experienced some of those symptoms.

Quam is reteaching himself how to play the flute — an instrument he’s played for 45 years. For a year and a half, he couldn’t get his lips to make the shape necessary to blow air across the mouthpiece to make a tone.

The tremors, not pronounced on his first cross-country bike ride, are there now. Some forgetfulness has set in. The toes on his right foot have started to curl under. He’s having trouble swallowing.

And he’s started having dreams in which he throws himself onto the floor. Five or six times he has awakened when he actually hit the floor.

He also knows a bit of what lies ahead.

“I know that sooner or later, I will be confined to a wheelchair,” Quam said.

Until that day comes, he said, he thinks about what someone has told him since his diagnosis, as he struggled with losing some of his musical talent.

“They told me, ‘Celebrate what you can do and don’t lament what you can’t do,’” Quam said. “With Parkinson’s, it is easy to become a couch potato. But I’m fighting against that.”

Quam, who wears his long gray hair in a ponytail, is meeting the disease head on — a determined, happy man with a sense of humor.

He laughs at the thought of losing some of his memory.

“I’ll always be making new friends,” he said.He’s actually doing things now that he didn’t do when he was 40.

He’s ridden a bicycle since he was a boy. When he was 40, he rode 600 miles on a bike with 150 other cyclists. Now, he’s riding alone and will be pulling a 100-pound trailer with his supplies on it. On his first cross-country trip, he survived nights in tents with bears on the prowl nearby.

He also knows that his cross-country trips mean something — not just to him but to others.

On his first bicycle ride, he raised $9,000 for the Davis Phinney Foundation, whose focus is helping people live a healthy life with Parkinson’s disease. On his motorcycle ride, he raised $3,000 for the foundation. He will collect donations for the foundation during this ride as well.

The money helps, but the effort also publicizes the foundation’s work and what it is like to live with Parkinson’s disease.

During Quam’s journey, he will stop at churches. When he can, he’ll pull out his slim black flute case, play with a choir, and tell a congregation about this disease and his journey.

The dozens of families who will host him along the way will know his story. So will countless strangers that he’ll meet.

“For me to do these things, to know that I am part of something bigger than myself, it’s the carrot that keeps me going,” Quam said.

The T-shirt he’s wearing during his interview says: “I have Parkinson’s, but it doesn’t have me.”

View photos and slideshow.

For more information on Steve Quam’s “Pedal for Parkinson’s” fundraiser and awareness campaign, visit stmatthewumc.net/pedal-for-parkinsons or email pedalforparkinsons@charter.net.

© 2012 Anderson Independent Mail. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.  Living with Parkinsons, 100 miles at a time

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