At the Davis Phinney Foundation, we're big fans of cycling. And for a good reason: research studies have shown that many people with Parkinson's have experienced significant benefits such as improved motor function, aerobic capacity, mood, cognitive function, social connections, and more from pushing pedals regularly.
The Davis Phinney Foundation funded some of the earliest research studies on the benefits of cycling for people with Parkinson's, a few of which went on to receive multi-million-dollar funding from the National Institutes of Health. And, just as importantly, they helped countless people with Parkinson's live well, right away.
Pushing the Pedal on Cycling Research
One of these studies began in 2018 when Dr. Anson Rosenfeldt and Dr. Jay Alberts led a project to determine if Pedaling For Parkinson's™ (PFP), an existing, low-cost program typically hosted by public recreation agencies and YMCAs, can slow Parkinson's progression. Also, the project sought to identify which individuals respond the most to this type of exercise. This study represented a translation of clinical research to everyday life, showing the power of research on people's quality of life.
The research team followed 50 participants, tracking their motor symptoms, non-motor symptoms, number of classes attended, and quality of life over 12 months.
Manuel Ramos, a study participant and member of the Pedaling For Parkinson's class in Arvada, Colorado, hopes that the study would "corroborate the belief many of us have that high-intensity exercise like cycling is one of the best things to do to combat Parkinson's."
Motivation to Move
Manuel had already been participating in the Arvada PFP class for about a year when the study began. "I felt good about the fact that something I was doing to help myself could also be the basis for potential benefits to others with Parkinson's," he said. "By participating, I also learned about the various tests we were taking to measure our progress, and it helped me focus on the importance of the exercises we were doing."
Like Manuel, Judith Wilson joined the project after having been part of a PFP class. "I frequently heard about Dr. Alberts and his work on spinning and cycling for Parkinson's treatment. The more I learned, the more intrigued I became, and the more I came to realize that perhaps I could contribute to this ongoing effort to determine Parkinson's cause(s), cure(s), and eventual prevention."
Fred Limbach, too, joined the study after having been an active part of the Arvada PFP class. "When Tom [Palizzi, the leader of the Arvada class] spoke of the opportunity to participate in a study by the Cleveland Clinic and funded by the Davis Phinney Foundation, I readily joined. I knew of both groups and their excellent reputations, and it was a chance to see if forced exercise slowed the symptoms of Parkinson's. Being part of a study group allows one to discover a new treatment and eventually a cure hopefully."
The Research Study Experience
Judith says that at the beginning of the study, the participants completed physical and cognitive assessments and were given a heart rate monitor and a cadence (RPM) monitor used to collect data in each spin episode. "Then, we were off!"
She says that their PFP group "continued on its merry way – working hard every session but having so much fun that occasionally an outsider would pass the room and turn around and come back, requesting to join the group that was 'having too much fun doing something as hard as spinning!'"
Observing the quantifiable variation of one day's ride compared to another was interesting, Judith says, as was seeing how "consistent pictures of each of our capabilities and performance outcomes became noticeable over time."
Encouraging Data and Personal Outcomes
Data from the study suggested just what Manuel had predicted it would. Findings indicated that cycling might be an ideal mode of exercise for people with Parkinson's because it enables individuals to achieve and maintain a moderate to high intensity of exercise regardless of disease severity. The study's compliance data showed that people with Parkinson's regularly attend community-based cycling classes without external encouragement. They can achieve and maintain moderate levels of exercise intensity without direct oversight.
That's because, the participants say, being part of PFP is a joy. "The best part is being with others who have Parkinson's so we can share support, experiences, news," Manuel says. "There is no pressure, no stress. Participants vary a lot in terms of cycling experience, and I've never heard anyone in the class criticize any other participant. The instructors are very helpful and supportive, and the other cyclists provide advice and suggestions, especially the more experienced cyclists who often are eager to offer tips, suggestions, and equipment recommendations."
"PFP is nothing short of amazing. It offers opportunities you may not see in any other Parkinson's setting. You will build relationships. You will build a community. And, you will increase your health quotient."
Fred agrees, both about the physical benefits of the study and PFP itself. "The study was very positive, with both short-term and long-term personal benefits," he says. "The short-term impact was that I grew stronger in my biking. The long-term benefit is I have had a lot of fun, and I feel better. Exercising in a group and the camaraderie you feel is very supportive. Plus, the study emphasized that exercise is one thing I can do and enjoy that has a positive impact on my quality of life."
Judith says she's occasionally asked why she chose to be part of a research project that was "so hard, for so long." The answer, she says, is "really fairly simple. I knew from the beginning that participating in this would allow me to make a difference in the lives of real people – helping to increase the body of knowledge about Parkinson's, leading to more and better treatment options, and potentially leading to the discovery of a cure(s) and preventative measures."
A side benefit of being one of the study subjects, she says, was the discovery that she still can improve physical performance. "I discovered three things about myself, which I believe are directly attributable, at least in part, to the study program: 1) over time, I was able to achieve and maintain an increased intensity of effort; 2) I could improve my overall performance better under guidance (forced effort) than I could do on my own; and 3) I discovered that I enjoy tandem cycling a lot, and the 50-year relationship my husband Ken and I shared was not threatened by communication, cooperation, and trust required by the two wheels of the tandem!"
Almost three years after the Pedaling For Parkinson's study began, Manuel says he does not doubt that "cycling can slow down the progression of Parkinson's, so I take it regularly and consistently, like any of my other medications."
Fred, too, remains an active PFP cyclist. "All a person needs to get is a stationary bike to get involved in Pedaling for Parkinson's and enjoying the benefits of exercise," Fred says.
Having once said about herself that "a cyclist I am not," Judith is now a cyclist role model. "I have never been in better physical condition in my entire life than I am right now," she says, "and PFP has had a substantial role in helping me to get to where I am today."
How You Can Get Involved
Our research program at the Davis Phinney Foundation, like our core mission, is uniquely focused on helping people with Parkinson's live well today. Each year, we partner with leading researchers and institutions to fund quality of life research that shows promise to help change how people live with Parkinson's, not years in the future but right away. Guided by our Science Advisory Board, we have supported more than 30 research studies focused on exercise, nutrition, gait, speech, telemedicine, alternative therapies, and other interventions that affect quality of life. Many of these studies have progressed to late-stage clinical research. Others have received NIH and PCORI funding, while others have become therapies that are being used today by people living with Parkinson's. And some, like the Pedaling For Parkinson's study, do all of these, helping countless people with Parkinson's live well immediately (and years later as well).
You can play an essential role in this research by supporting our Quality of Life Research Fund. Click here to learn how your contributions help our Science Advisory Board say "yes" to more promising research projects that change people's lives.