A recently concluded study has delivered an important message: for some people with Parkinson’s disease, movement can be medicine.
UCHealth University of Colorado Hospital was one of four sites for the SPARX (Study in Parkinson Disease of Exercise) trial, funded by the National Institute of Neurological Disorders and Stroke (NINDS). The phase 2 randomized trial enrolled a total of 128 individuals in the early stages of the neurologic movement disorder, which affects about 1 million people in the United States with another 60,000 cases diagnosed annually.
The study addressed a couple of questions. First, is high-intensity exercise safe and feasible for people in very early stages of Parkinson’s disease who are not yet on medications? Further, which intensity (moderate or high) could potentially slow the progression of the disease and therefore warrant further investigation?
The trial randomly assigned people with Parkinson’s disease to one of three arms. Those in the control group did not exercise for six months. A second group engaged in moderate treadmill exercise three times a week for six months, bringing their heart rate up to 60 to 65 percent of maximum capacity. The third group exercised as frequently and for the same duration as the second group, but they brought their heart rate to 80 to 85 percent of the maximum. Those in the exercise groups wore monitors that collected and downloaded data about their physical activity.
Researchers assessed the study participants at baseline and at six months with the Unified Parkinson’s Disease Rating Scale (UPDRS) Motor Score, which measures the progression of the disease – the higher the score, the worse the disability.
Make a move
The results of the three-year study, which concluded in 2016, were published early this year in JAMA Neurology. The findings were significant. High-intensity treadmill exercise is, indeed, safe and feasible for people in early and mid-stages of Parkinson’s disease. At the end of the six months, the UPDRS score for the high-intensity exercise group hadn’t changed, indicating that their motor function overall hadn’t deteriorated. By contrast, the control group’s score increased by 15 percent, while the score for the intermediate exercise group rose about 8 percent.
The bottom line: Providers caring for many people with Parkinson’s disease can safely prescribe exercise for them. It was a satisfying finding for Margaret Schenkman, director of the Physical Therapy Program at the CU School of Medicine, and principal investigator for the SPARX study in Colorado. Schenkman has been studying the effects of physical therapy on patients with neurologic diseases for more than 30 years.
“We didn’t know going in on the SPARX trial if high- or moderate-intensity exercise for people with Parkinson’s disease would be worthy of further study,” Schenkman said. “The study shows that neurologists can rest assured that it’s safe and feasible for their patients to exercise at a high intensity. That’s huge. We can get people started right away on exercise habits, when that is easier to do.”
Answers raise questions
Schenkman offered several provisos about the findings of the trial. She noted, for example, that the SPARX study participants had not yet started taking medications so as not to cloud the conclusions. “We wanted to be clear about the benefits of exercise,” she said.
It is possible that regular exercise could help people with Parkinson’s disease delay starting medications, which can produce debilitating side effects, such as dyskinesia (involuntary movements), dystonia (spasms and changes in posture) and hallucinations, Schenkman said. But that is a “tricky question that requires further investigation, she cautioned.
“It is important that people begin meds soon enough to stay functional,” she said. That points to making sure to involve specialists in movement disorders in balancing medications. Two of them, Drs. Benzi Kluger, and Brian Berman, both of whom practice at UCHealth University of Colorado Hospital, were co-authors of the Jama Neurology article and are important advocates for neurologists and physical therapists forging partnerships in treating people with Parkinson’s disease.
“Not every neurologist gets that,” Schenkman said.
The study also raises questions about other effects of high-intensity exercise, Schenkman said. “Exercise is good, but Parkinson’s disease is hard, and asking people to do it is not trivial,” she said. It will be important, Schenkman said, for researchers to understand whether high-intensity exercise improves or decreases quality of life and if fatigue from the exercise takes away from other activities as the disease progresses.
The results of phase 2 of the SPARX trial call for a phase 3 study to “establish efficacy.” That will require another years-long round of study, but Schenkman noted that the Parkinson’s disease community is unusually engaged and often pushes clinicians toward new treatments, not the other way around. She said she began receiving letters from patients interested in her physical therapy work 20 years ago, well before it had attracted much notice from neurologists. She continues to listen to and explore ideas outside the academic community.
For example, independently of the SPARX trial, Schenkman and Jean Marie Berliner, a PhD student in the CU Physical Therapy program, spent 12 months collecting physical performance and other data from a course developed by Gary Sobol, founder of GZ Sobol’s Parkinson’s Network. Sobol, 78, was diagnosed with Parkinson’s disease in 2008 and developed a high-intensity exercise physical therapy regimen that includes standing, marching, twisting and reaching. The class targets eight “deficits,” including rigidity, hand dexterity, posture, cognition, stability, gait, balance, slow movements and the inability to move spontaneously.
Sobol’s class began in January 2012 at a Boulder Valley YMCA and continues to meet each week. The Parkinson’s Network, which he created in 2013, now holds classes for 3,200 people in 35 states and 65 cities and provides training all over the country. He met Schenkman after she spoke at a Parkinson’s disease support group in Boulder, where they formed a natural partnership.
“People asked us, ‘How do you know this course is working?’ ” Sobol said. “That’s why we went to Margaret. You can’t just go out anymore and say, ‘This is what this does.’ You have to have science-based research.”
Schenkman, in turn, said she and Berliner are working to determine the “impacts” of Sobol’s class and whether it results in any “adverse events” for participants. “We are in the process of reviewing the information to decide whether it will be publishable,” she said.
The work Sobol is doing underscores Schenkman’s point about the importance of patient activism in driving forward understanding of Parkinson’s disease and other movement disorders (He’s also deeply involved in using high-intensity exercise to help people with multiple sclerosis). He was an ultramarathon runner before his diagnosis but said in retrospect he got an early clue of disease onset in 1999 when he couldn’t smell fertilizer fumes that made others at a gathering react with distaste. He now knows that losing smell is a warning sign of Parkinson’s disease.
“There was a message there,” Sobol said. “I often wonder what would have happened in ’99 if I’d been able to get on medication right away.” As the years passed, he began tripping and falling and his left arm stopped swinging when he walked, as if he’d had a stroke. He also had trouble lifting his left leg, and his handwriting deteriorated to the point that he couldn’t write a check.
Instead of accepting the physical deterioration, he said he worked on exercises to improve his manual dexterity and regained the ability to write legibly. He told his neurologist about the improvement, wondering how he could do this with a degenerative disease. “You probably created new [nerve] pathways,” his neurologist told him.
He was in a support group in Boulder when he was asked to lead an exercise class. Sobol agreed – even though he admits he didn’t know exactly what he was doing at the time – and the CEO of the Boulder YMCA offered to provide space and resources. A Denver Post article covered the opening class, after which he arrived to find 45 people waiting to sign up. A yoga instructor from Boston heard about the class, met with Sobol, learned his exercise techniques and took the knowledge home. The number of instructors and people taking the classes has grown ever since.
Schenkman believes that as word spreads about the SPARX trial and long-term exercise programs like those developed by Sobol and the Parkinson’s Network, more medical providers will look to collaborate with physical therapists to help manage Parkinson’s disease and other debilitating neurologic conditions and improve patients’ lives.
“Thirty years ago, there was almost no one thinking about it,” Schenkman said. “Now we are training the next generation, and I believe physical therapy in the future will be thought of like medicine.”