Michael Westphal of Great Cranberry Island smiles while sprinting for the finish line of a 5K road race on May 16 in Seal Harbor. Westphal, who is battling Parkinson’s disease, is training for the Great Run marathon on June 20 on Great Cranberry Island. PHOTO BY TAYLOR VORTHERMS

Runner with Parkinson’s races for a cure

GREAT CRANBERRY ISLAND — A few years ago, Michael Westphal fielded an unexpected question while grocery shopping.

“Why are you dancing?” asked a 4-year-old girl in the Hannaford aisle. She was referring to Westphal’s excessive movement, or dyskinesia — a side effect of the medication he takes for his Parkinson’s disease.

“Oh,” Westphal began, “I just like to dance.”

The girl smiled before her mother summoned her away.

“Little kids are like mirrors,” Westphal says. “You can really see yourself in their faces because they don’t think twice about staring.”

Westphal, a 58-year-old carpenter who lives on Great Cranberry Island, was diagnosed with Parkinson’s about nine years ago at the age of 49. The progressive central nervous system disorder can make even the simplest aspects of life, such as blending into a public setting, increasingly difficult. But Westphal has found a reprieve from this kind of attention through one unexpected activity: running.

While some Parkinson’s patients lose their ability to walk, Westphal — one of Maine’s elite runners in the 1970s and ’80s – seems to shed his symptoms between the starting and finish lines of road races. On June 20, Westphal plans to run his first marathon in 22 years — Great Cranberry Island’s annual Great Run marathon — to raise awareness for Parkinson’s as well as money for the Michael J. Fox Foundation.

“Mike is literally in the race of his life,” says Great Run organizer and fellow Great Cranberry Island resident Gary Allen. “He’s raising money to hopefully help find a cure.”

Westphal began fundraising with a $4,000 goal leading up to the marathon. As of today, he has raised almost $28,000 for the foundation’s research programs, putting him among the top 10 of more than a thousand 2015 fundraisers.

“I feel kind of embarrassed about the publicity,” Westphal says, smiling. “But I’m going to keep doing it, as long as it’s raising money to find a cure or relief for some people.”

Allen, also an avid runner who has known Westphal since they were children, isn’t surprised by his friend’s modesty.

“That’s Mike — he’s a quiet person who doesn’t want to make a fuss,” Allen says. “But as a competitor, good luck staying with him. He lets his feet do the talking.”

Decades before Westphal’s diagnosis, he was one of the top runners in the state. The University of Maine track star could run a mile in four minutes and 19 seconds. In 1979, Westphal paced the first female Olympic marathon gold medalist in the Boston Marathon before passing Maine’s Joan Benoit Samuelson, who won the women’s division for the first time that year.

Westphal has finished 12 marathons, with a personal best time of 2 hours, 29 minutes and 32 seconds.

“Mike was that rare combination of people who works hard and has natural ability,” Allen says. “There was a period in eastern Maine where, if you wanted to win any race, you had to go through him.”

Westphal faded from the competitive running scene in the 1990s as he grew more involved with his family and operating his carpentry business on the island. But running always remained part of his life, that is, until 2006 when he began feeling soreness in his left shoulder.

“I just thought it was a pulled muscle,” Westphal says. “But it wouldn’t go away.”

The pain gradually worked its way down his arm, prompting Westphal to visit an orthopedist. The doctor prescribed him a neck brace and assigned him exercises to reduce the stiffness, but the discomfort persisted.

Next, Westphal sought relief through physical therapy. When the therapist asked Westphal to tap his feet on the ground, she noticed some hesitation in his left foot — a red flag for movement disorders. Without sharing her suspicions with Westphal, she referred him to a neurologist.

There is no simple diagnostic test for Parkinson’s, and its symptoms are unique to each individual. The disease results from the dying off of dopamine-producing cells responsible for coordination and movement.

The neurologist prescribed Westphal with Carbidopa-Levodopa  — a dopamine replacement drug — which immediately alleviated his symptoms, verifying their cause.

“I just didn’t believe it was Parkinson’s at first,” Westphal says. “Even when she told me, I didn’t quite believe it.”

With the help of this medication, Westphal’s symptoms ranged from mild to nonexistent for the next few years — a time during which he remained unconvinced he had Parkinson’s. But slowly, Westphal began losing coordination, and the stiffness once isolated to just one arm began to seize his whole body.

“I think he started to sort of withdraw,” Allen says. “He stopped running and doing the things he loved. And when you’re a runner, running is part of you. You don’t feel whole without it.”

Westphal says the worst part of Parkinson’s is what he calls the “slow periods,” which occur when his medication begins to wear off. Before his next dose can kick in, Westphal says he often feels like a “zombie,” shuffling around while hunched over, with his facial expressions flat and his arms unmoving by his side.

“You’re just uncomfortable in your own body,” Westphal says. “At times, it’s torture. You just don’t feel like doing anything.”

For years, that’s exactly what Westphal would do during these periods: nothing. He would suffer through the hour or two until it passed.

Until one day last summer, Westphal didn’t wait; he ran.

“At first, my knees will lock together, and I’ll be clomping along,” Westphal says. “But after about a quarter-mile, it goes away.”

The only hint of Westphal’s Parkinson’s while he’s running is a slight head bob.

“I’m used to seeing him struggle — his movements are so affected by his disease,” Allen says. “Then, to see him out running again… It was like, ‘Holy crap, look at him go!’

“Gradually, you could see that spark come back and that fire return in his eyes.”

Westphal began entering road races again this spring, and he has been competing almost every weekend. Though Westphal says the running community has been very supportive, he occasionally notices the looks his uncontrolled movement attracts before and after races. Westphal describes his dyskinesia — a result of an excess of artificial dopamine — as “annoying, but tolerable.”

“With Parkinson’s, the first thing you’ve got to lose is your vanity,” Westphal says, paraphrasing a quote by his inspiration who’s also battling Parkinson’s, Michael J. Fox.

“I used to kind of hide when it came to public events because I was embarrassed,” Westphal continues. “People would look at me and not know what was wrong with me. I figured this year, it was time to get out and show people what Parkinson’s is all about.”

Westphal is now running 50 miles a week in preparation for the Great Run. On Memorial Day, he and Allen totaled 20 miles together, with Westphal also running Ellsworth’s annual Memorial Mile race that morning in five minutes and 32 seconds.

“I thought it was completely abstract that Mike would ever run another marathon,” Allen says. “He’s climbing back up that mountain, which I think he felt like he’d been knocked off permanently.

“I don’t throw the word ‘miracle’ around often, but what Mike is doing is on the verge of being a miracle.”

Westphal says he doesn’t really understand the big deal.

“I’m just doing what I like to do,” he says. “I think everyone ought to do what they can to enjoy what their passion is. Mine is running.

“Just don’t give up.”

According to the Michael J. Fox Foundation’s website, 89 cents of every dollar donated goes to supporting its research programs to help speed a cure for Parkinson’s. Donate by visiting Westphal’s fundraising page.

Find more information at michaeljfox.org or by emailing Westphal at [email protected]

Taylor Vortherms

Taylor Vortherms

Sports Editor at The Ellsworth American
Taylor Vortherms covers sports in Hancock County. The St. Louis, Missouri native recently graduated from the Missouri School of Journalism and joined The Ellsworth American in 2013.

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