Long before Jose Cabassa, MD, chose to specialize in movement disorders, his grandmother planted a seed in him.
“My grandmother was a master at making birthday cakes,” Dr. Cabassa said, reflecting on his childhood in Ponce, Puerto Rico. He remembers his grandma as “a typical loving grandmother” who was “always smiling and laughing, even though she hated being in pictures.” Then he added, “My grandmother was also the first person I knew who had Parkinson disease.”
Dr. Cabassa would watch his mom struggle to care for his grandmother at home as she declined, recalling her moving in and out of hospitals and nursing homes. “I know they both suffered,” he said. By the time he was in medical school, working under a movement disorder specialist, his grandmother was in the last stages of the disease. He knew which specialty he was being called to pursue.
An Old-Fashioned Approach
Today, Dr. Cabassa has his own movement disorders practice in East Harlem, New York. He sees patients from all five boroughs, and all backgrounds. “I love seeing patients,” he said. “I see patients from Washington Heights and the Bronx, from all over Manhattan. I’m from Puerto Rico and Spanish-speaking, so I get a large line of Latino patients.” When he works in single-day clinics throughout the city, like the clinic in Queens he worked in recently, his patients come from families all over the world: “Europe, Asia, Central America.”
Dr. Cabassa describes his style as a doctor as an “old-fashioned clinical approach and bedside manner.” He says he’s a teacher at heart, wanting to educate and empower his patients. “If I can at least make somebody understand why we’re doing this [particular treatment or therapy], they’re more likely to do it.” Dr. Cabassa says his approach is also about listening closely to a patient, taking careful notes, using their history—not just tests—as a guide for treatment. “Patients sometimes say to me, ‘Are you sure you can take this much time with me? Don’t you have to move on?’” he said. Then, laughing, he added, “‘No,’ I tell them. ‘I’m the boss.’”
A Ringside Revelation
A few years ago, Dr. Cabassa was invited into what he calls the “ringside physician world,” working with professional boxers. It was an unexpected turn: “I was never part of or had anything to do with that world before,” he said. But his encounter with top-notch, professional athletes sparked him. In his clinic, he has access to some of the best medications. But something was still missing for people living with Parkinson’s: high-quality, steady exercise.
The thing about that kind of exercise is it has always existed, but only if you pay for it.
Closing the Care Gap
In 2019, Dr. Cabassa launched the nonprofit Moving Brains Foundation, a physician-monitored, moderate to high-intensity, skill-based fitness program run by professional athletes and trainers. It’s designed specifically for people impacted by Parkinson disease at any stage of their disease. And it’s free.
“Sometimes, the ‘free’ part shocks people,” Dr. Cabassa said. But he’s committed to closing the gaps in care.
From the beginning of his academic career, Dr. Cabassa’s been interested in health equity. He did studies in gender differences in drug use and in epilepsy in the Latino population. And he sees it firsthand in his one-day clinics in North Philly, Baltimore, the Bronx, and East Harlem, where his private practice is. “With proper management, PD patients can make significant improvements in mobility and tremor,” he explained. “But my experience in different urban areas is that, in poorer areas, there’s poorer management of the disease.”
Closing the gaps, he said, is a “complex question.” The Moving Brains Foundation is, in part, his way of finding an answer to that question.
A Revolution in Care
A recent study that looked at access to care in people with Parkinson’s states that “there are only 660 movement disorder specialists who practice in the U.S., with a total of six in rural areas. There are one million people in the U.S. living with Parkinson’s.” As Dr. Cabassa puts it, “There’s a gap in doctors.” As he knows, going into private practice as a movement disorders specialist isn’t easy: “If you’re going to do this on your own in a place like New York City, you may not survive. If you’re in a rural area, it’s almost impossible to specialize.”
This means many people living with a movement disorder are not seeing a specialist at all or not seeing them as often as they need.
“That’s one of the benefits of the Foundation,” Dr. Cabassa said, describing the potential his fitness nonprofit has to revolutionize care. “Most patients are seeing their doctor every 6 months. In the gym, I’m seeing them every week for this program.” What he wants to do is create mobile gym units where doctors like him could order medications and make adjustments while they’re in the gym. He’s already doing this with his patients.
“The participants in my program get to see their Parkinson’s doctor every week and interact with them in an environment that isn’t stale.” He says he’s not waiting for his patients to report a problem in six months or “to become frail.” They’re making changes and improving mobility on the spot.
“My passion,” he said, “is helping people now, today.”
A Commitment to Hispanic Families
This is why Dr. Cabassa is drawn to PMD Alliance’s mission: we, too, are committed to supporting the entire Movement Disorder Care & Support Ecosystem© in living well today.
Dr. Cabassa is now a full-fledged PMD Alliance Ambassador and recently brought his expertise as a guest presenter on one of our Spanish-language Saber es Vivir livestreams. “I often joke that my second sub-specialty is Spanish,” he said. “But it’s really not just about Spanish, but about being bilingual. Today, people want information in Spanish and English,” as different generations of the same family may have different needs and preferences. For Dr. Cabassa, this has been an enriching experience. “I get to know people from all over South America, Central America, the Caribbean.” He wants to continue to connect to the movement disorders community in this way by coming back and offering more of his resources and insight through Saber es Vivir.
The Future: Prescribing Exercise
Lower dopamine levels in people with Parkinson’s can make it a struggle to stay motivated. But in his gym program, Dr. Cabassa has seen the opposite: he has seen commitment and resilience. “Even when people have a hard time in class one week, they come back. They get up and come back.”
“All our patients ask for more,” he said. “When we’re on vacation, they’re upset. They want to keep exercising through this program.”
For Dr. Cabassa, this is the future of movement disorders care. “You take your medication every day,” he said. “It’s time we do the same with exercise.”
Help the helpers
With too few providers trained in movement disorder management, PMD Alliance provides free continuing medical education and an annual conference for healthcare providers to expand informed care. We also host weekly, live webinars with experts of all kinds to connect people with the information they need right now.
A donation of just $250 supports scores of people without access to expert care, providing them with weekly, free, expert guidance from movement disorder specialists.