Although Bill Bucklew of Wilmette, Illinois, suspected he might have Parkinson’s, the diagnosis in early 2012 still felt like “a punch in the chest.” But this 43-year-old adventure athlete wasn’t knocked down for long. He immediately took action to make an impact on the disease — by volunteering for clinical research and raising funds to find a cure.
A few years prior, Bill noticed stiffness in his legs while running. His doctor diagnosed him with sciatica and prescribed physical therapy. As his symptoms continued to worsen, Bill began looking for answers elsewhere. A friend pursuing graduate work in Parkinson’s research recommended he see a movement disorders specialist.
Bill went to Northwestern University, where he saw Tanya Simuni, MD, who confirmed his PD diagnosis. But she also presented him with an opportunity to do something about it. As a newly diagnosed patient not yet taking any medications, Bill was eligible to take part in the Parkinson’s Progression Markers Initiative (PPMI), the landmark biomarkers study sponsored by The Michael J. Fox Foundation.
Having never participated in clinical research, Bill had a few reservations about joining this five-year study. He also jokes he’s a “big baby” when it comes to needles, so he was nervous to have his blood and spinal fluid drawn. Within three weeks of his diagnosis, however, he decided the potential long-term good far outweighed any temporary discomfort he might experience. He says, “We all want answers in how the disease progresses. If there’s something I can do to help figure this out, I’m in.”
His experience in PPMI has been seamless so far. Along the way, he’s learned a lot about the disease and its symptoms. Prior to the study’s smell test, he wasn’t aware his sense of smell had been affected. Bill has also found the volume of research being conducted in Parkinson’s to be very encouraging. “It gives me hope for what I’ll see in my own lifetime,” he says. The first in his family to be diagnosed, Bill thinks his father may have Parkinson’s, too, and possibly his late grandfather. Bill’s father has already scheduled an appointment with a specialist to see if he has PD.
While clinical research is a new avenue for Bill, competing in extreme athletic events is not. Last March, he decided to take on his most challenging race yet: the Wisconsin Ironman in Madison. To raise awareness and research dollars that could help patients like him, he joined Team Fox and set a $1,500 fundraising goal. With less than six months to go, he had to prepare himself to swim 4224 yards, bike 112 miles and run 26.2 miles. His training schedule was beyond rigorous. “I’d get up at 5 to ride 20-25 miles on my bike. Then at lunch, I’d go to the gym to run or swim. On the weekend, I’d go on long rides or runs,” he says.
Running was the hardest, but he found swimming and biking to be especially helpful in managing his PD. He says he felt his symptoms actually diminished during his training. He had competed in other triathlons before, and even climbed Mt. Rainier in 2007. But there’s nothing like the Ironman. Bill admits, “I was concerned if I could finish.”
On September 9, he proved that he could do it, Parkinson’s or not. He crossed the finish line in 14 hours, 49 minutes and 18 seconds. “It was a long day,” he says, “but I felt great during the race. It was an unbelievable experience.” He was also proud to beat his fundraising goal, generating over $3,500 for MJFF. Thanks to the Brin Wojcicki Challenge, every dollar he raises will be matched dollar for dollar.
Impressed by his feat, a local paper recently picked up Bill’s story. While those close to him knew of his PD, he hadn’t told everyone yet. He says, “In a way, the article made it easier to share with people. I was worried they might feel sorry for me.” In reality, they had the opposite reaction. Bill explains, “People have said, ‘If he can do the Ironman with PD, I can do something, too.’”
Bill is inspired to do more. He’s already thinking about his next Team Fox event, which might be the 2013 Ironman World Championship — if he gets in. “Through PPMI and Team Fox, I want to do my part. By getting involved and being proactive, I know I’m helping myself — and others for the future.”