On the day Jason Kopacz learned that he had Parkinson’s disease, he went home, dusted off his running shoes and hit the road. 

Kopacz was just 36 when he was diagnosed with Parkinson’s, a neurodegenerative condition that impacts a person’s movement over time. Currently, there is no cure for Parkinson’s — only interventions that can alleviate some of its symptoms, including tremors, muscle stiffness and balance problems. 

After getting his diagnosis, Kopacz was determined to get in shape. 

“After that, I just thought, ‘Better get moving!’” Kopacz recalls. “I figured it couldn’t hurt, and if nothing else, my heart would be in good condition.” 

So Kopacz went for a run. And then another. And then hundreds, maybe thousands, more, including six marathons.

 Twelve years and some 14,000 miles after his diagnosis, Kopacz is still running. And today, he’s logging miles for more than his own health. In 2018, he created the Team Kopacz Foundation, which uses running as a way to raise money for Parkinson’s disease research at the University of Minnesota Medical School.

“We’re trying to bring everyone closer to a future without Parkinson’s,” Kopacz says.

Changing course

During a routine physical in 2014, Kopacz’s doctor noticed that the father of four in front of him wasn’t moving his left arm. The doctor suggested Kopacz see a neurologist, so Kopacz made an appointment with Paul Tuite, MD, a professor in the Medical School’s Department of Neurology. 

Tuite noted the stiffness in Kopacz’s left arm, and then he asked him an interesting question: “Can you smell your babies’ diapers?” 

Kopacz’s wife, Kristi, had twins about 18 months prior.

“I was like, ‘No, I can’t,’” Kopacz recalls. “And [Tuite] says, ‘Yep, that’s another classic sign of Parkinson’s.’” 

Tuite told Kopacz and his wife that although a Parkinson’s diagnosis is scary, it’s not an insurmountable challenge. There are ways to lessen the disease’s impact, he told them, including committing to exercise.

While the diagnosis was surprising, especially at Kopacz’s age, it didn’t come as a complete shock. His grandmother also had the disease, and he was aware there was a genetic risk of him having it, too. With his grandmother’s memory and Tuite’s advice in mind, Kopacz set out to live a more active lifestyle alongside his diagnosis. 

“My grandma, she was pretty bad toward the end,” Kopacz recalls. “And unfortunately, she didn’t move around much. I figured the opposite of not moving is moving, so that’s what I did. I wanted to get better for my wife and my kids.”

Movement matters

Parkinson’s disease damages, weakens and ultimately kills neurons that produce dopamine, which acts as a messenger between the brain and muscles. When dopamine disappears, communication between the brain and muscles is interrupted, and movement is hindered.

While certain medications can bolster or replicate dopamine’s effect, there is still no way to slow the  disease’s progression or reverse its damage.

Exercise, however, might be different. Colum MacKinnon, PhD, a professor in the Medical School’s Department of Neurology and member of the University of Minnesota’s Udall Center of Excellence in Parkinson’s Disease Research, says smaller studies in animals and people have shown that high-intensity exercise may have neuroprotective qualities, meaning it actually prevents the death of neurons.

“If that’s the case, it would be the first intervention that actually slows the progression of the disease,” he says. 

Today, MacKinnon and his team are part of a nationwide research study that aims to answer this question more definitively. 

Patients enrolled in the study are asked to do 30 minutes of exercise, four times a week, for one year. One group does moderate exercise (at 60-65% of their maximum heart rate) while the other does high-intensity exercise (at 80-85%). MacKinnon and the research team collect data every three months to assess disease progression. 

“The implications from this study could mean that, if you get a diagnosis of Parkinson’s disease, or if you’re at risk of getting it, exercise has to be your first-line treatment,” MacKinnon says.

One foot in front of the other

Kopacz isn’t in the study, but he’s happy to attest to exercise’s positive impact. He credits running with his ability to live with few limitations since his diagnosis. 

“Parkinson’s sucks, don’t get me wrong,” he says. “But it’s not the end of the world. I try to challenge myself and challenge others who have been diagnosed to live life on your terms, and above all else, have some fun.”

Fun for him has meant finding purpose in the Team Kopacz Foundation. Through fundraising golf tournaments and the Knock Out Miles for Parkinson’s 5K run, Team Kopacz has raised more than $250,000 for research at the University of Minnesota, including support for MacKinnon’s work. 

Kopacz doesn’t know what his future holds, but right now he feels good. He plans to keep running his usual 3 to 5 miles every few days and to keep supporting research that might help others like him in the future. 

“I try to take every day in stride,” he says. “Will we have a cure for Parkinson’s in my lifetime? I don’t know. But I know we’ve got a lot of smart people working on it, and I’m going to remain an optimist.”