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Cyclist on journey to live well with disease

Cyclist on journey to live well with disease

By GLENDA CAUDLE
Special Features Editor
For Steve Quam, the most important part of his cross-country bike journey is the opportunity it gives him to connect with others who have Parkinson’s Disease, to learn their stories and see for himself what they do to “live well.”
Quam, who is semi-retired and works part-time at a residential facility for the deaf and those with significant mental illness, spent Monday night in Union City as the guest of Union City First United Methodist Church. He says churches have been of significant help to him as he undertakes his second journey from shore to shore to call attention to Parkinson’s Disease. Quam also has a small music therapy private practice, which he works in with his wife, Jeanne. Both are board-certified professional music therapists. Mrs. Quam also plots her husband’s bicycle course for him.
In the churches where he has stopped along the way, Quam has both visited with parishioners and slept within the welcoming walls of the houses of worship, has camped on church property, has spent some nights with church members, has practiced with church choirs and sometimes sung with them in a service and has met other people of faith who are dealing with Parkinson’s in positive ways. In fact, he recently was seated next to someone facing the same challenges he faces at a church choir practice.
“I appreciated learning his story and hearing his experience and was amazed at how well he is doing over the 10 years since he was diagnosed,” Quam says.
In Union City, he joined the Tuesday “Pray for the Children” prayer group for an early-morning start to the day that would then take him to East Prairie, Mo., via Hickman, Ky., and a trip across the Mississippi River by ferry.
At home in Anderson, S.C., the bold bicycler worships at St. Matthew United Methodist Church in Greenville, S.C. His home church members are displaying his travel diary on the congregation’s website and charting his progress there.
“They’ve been very supportive of these ‘outlandish’ trips I do,” Quam says with a smile.
This is his second sea-to-shining-sea trip. He undertook the first two years ago. That was two years after he was diagnosed with Parkinson’s. For his inaugural journey, he set out from Anacortes in northwest Washington state and marked the end of his 4,224-mile trip at Edisto Island in South Carolina.
This time, he began pedaling April 15 at Edisto and intends to call a halt in Newport, Ore. The Quams’ son, Mikkel, lives there and plans call for father and son to celebrate the successful completion of the trip by then driving to Minneapolis, where they will be involved in a joyful marking of the 100th birthday of EdithGrace Quam, their mother and grandmother, on Aug. 28.
Quam hopes not only to call attention to Parkinson’s Disease and the urgency of battling it in research labs, but also to the valiant efforts waged each day by those who are determined to “live well” with the illness. He is living proof that such a lifestyle is possible.
He chose the Davis Phinney Foundation for Parkinson’s because he admires the organization’s philosophy — Living Well With Parkinson’s — and because he has been a longtime “fan” of bike racer and fellow Parkinson’s fighter Phinney.
Phinney was the first American to win a stage in the Tour de France and also claimed an Olympic medal. He was diagnosed with early-onset Parkinson’s when he was 40. Most of those who receive the news get it after age 60, as did Quam, who was 62. Phinney shares his early-age diagnosis with the likes of actor Michael J. Fox, who learned about his life-changing opportunity at 29.
Quam says he was thrilled to be able to enjoy a private dinner with Phinney two years ago. While not a bike racer himself, the cross-country rider is a member of a bicycle club and has been in love with the sport since he was 6 years old and first learned to stay upright and moving forward on a two-wheeler. “I’m living proof that you can accomplish anything if you set your mind to it,” he says.
The idea to take his plea for support on the road came after Quam attended a Parkinson’s Support Group seminar that focused on the Davis Phinney Foundation. He realized, he says, that he could do something to “give back” while he still had the necessary balance, strength, endurance and ability to get the job done.
“I had wanted to bicycle across country, so I decided to do it to bring awareness to Parkinson’s. People asked me what I would do next when I finished the first trip. So last year, I motorcycled 16,140 miles to Fairbanks, Alaska, and in the middle of that journey, out of shape though I was, I did the hardest bicycle ride of my life. I had my bike shipped out to me there and I did the Copper Triangle. That ride included scaling two peaks above 10,000 feet and one above 11,000. It took me from Copper Mountain (Colo.) Ski Resort to Leadville, Colo., to Vail, Colo., and back to Copper Mountain. It was the hardest ride of my life. I was invited to participate in it by the foundation and I’m proud to have completed it in 14 hours and 41 minutes for the 78-mile route,” Quam says.
This time around, he will be tackling some challenges in Snowy Range, Wyo., and he is looking forward to revisiting Yellowstone and the Grand Tetons.
The most important part of the new journey for Quam, however, is reconnecting with as many hosts from his previous trips as possible.
“I had such a warm reception from so many across the country and last year I met up with many of them again. Now I’m planning a third reunion. I’ve stayed with friends and relatives and friends of relatives and relatives of friends and I’ve had support from Gold Wing members.”
Only occasionally, Quam recalls, has he found himself with no human hosts on his journeys, but he brings along camping equipment, just in case an outdoors evening is necessary. He says he will always remember once in the northern Cascades when it fell his lot to pitch his sleeping bag so near the side of the road that there was barely enough room to stretch out. But stretch out he did, even though he was warned of the danger of bears. He says he simply hoisted his food pack a little higher in a nearby tree and made it through the night just fine.
The solo bicyclist is living his dream and counting each day a triumph and a blessing. To help make it possible for more Parkinson’s patients to live well, go to http://sqpd.us and contribute whatever you have to offer.
Glenda Caudle may be contacted by email at glendacaudle @ ucmessenger.com.

Published in The Messenger 5.18.12

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