In an average week, Janet Barr jabs, hooks and crosses her way through three Rock Steady Boxing classes. She also sings in two virtual choruses, practices chair yoga and Tai Chi and takes modern dance, swaying to the music and losing herself in the story.
Seven years ago, she never imagined she would join any of these groups — but, then again, she never expected to be diagnosed with Parkinson’s disease, either, the uniting theme among them.
“I’ve made a lot of new friends because of Parkinson’s disease,” Ms. Barr said last week from her home in Westhampton Beach, just shy of her 80th birthday. “Most groups you join because you’re interested in what they’re doing, but with Parkinson’s, you don’t choose to join it. You just get assigned to it.”
Every year, some 60,000 Americans are diagnosed with Parkinson’s disease, a fraction of 10 million people living with the “common yet treatable” neurodegenerative disorder worldwide, explained neurologist Dr. Guy Schwartz, co-director of the Stony Brook Parkinson’s and Movement Disorders Center at Stony Brook Medicine, which has a location in Hampton Bays.
In its early stages, the disease causes stiffness, imbalance, tremors and slowing of movement. But as it progresses, it can eventually impact walking and talking.
“It is a difficult disease to live with and until one experiences it or one has second-hand experience seeing a loved one go through it, there’s no question that it profoundly changes the lives of patients and those who are close to them,” Dr. Schwartz said.
For those living with the disorder, every month is Parkinson’s Disease Awareness Month, but April specifically shines a light on it — a disease made famous by figures such as Muhammad Ali and Michael J. Fox, who has raised over $900 million for Parkinson’s research through his eponymous foundation.
“Parkinson’s disease is really at the forefront of advancement in science,” Dr. Schwartz said. “If you look back to the 1920s, when the first treatment for Parkinson’s disease was a surgical treatment, it wasn’t until the 1960s when the first drug was developed. We’ve come a long way. That should be an inspiration to individuals living with any disease, that there’s hope — because science is very powerful.”
But when Ms. Barr received her diagnosis in 2014 — with a slight tremor in her left hand and a drag in her left foot — what she immediately felt was fear and uncertainty. While medication and exercise are managing her symptoms, treatment plans vary, Dr. Schwartz explained.
“As the disease reaches different stages, the algorithm implemented to keep up with the changes of the disease varies and continues to be tailored and dynamic, because the disease is dynamic,” he said, noting the “holy grail” of treatment will ultimately arrest the disease or prevent it in at-risk people who are not yet showing symptoms.
“Targeting a particular protein may be the lynchpin of developing a neuroprotective or disease modifying treatment,” he said. “There’s a lot of funding and interest and excitement about getting to that level of detail and understanding.”
Last month, Sag Harbor’s Bret Parker — who serves as co-chair of the Patient Council for the Michael J. Fox Foundation — joined some 350 advocates for a series of virtual meetings with U.S. Congress members and staff to discuss federal funding for Parkinson’s research, which has decreased by millions of dollars in recent years.
“Believe it or not, one of the main sources for funding for research for Parkinson’s in the congressional budget is through the Department of Defense,” he said. “We see a disproportionate impact in veterans and people who served in the military with Parkinson’s. It could be from exposure to chemicals, or it could be from brain trauma.”
While seeking federal funding, Mr. Parker takes on the cause himself, pushing his limits in physical feats and recently bringing his fundraising total to $700,000 for Team Fox — the grassroots arm of the Michael J. Fox Foundation — since his diagnosis at age 38 in 1997, which he kept a secret for five years.
“I was scared, at first, about sharing this with people, for fear that they would have pity for me or feel bad for me. And, in fact, people have just been completely supportive,” said Mr. Parker, who also works as the executive director of the New York City Bar Association.
Now 53, Mr. Parker’s symptoms have progressed. A tremor in his hand and rigidity kick in more often, his medication isn’t as effective, and he said he has to try harder to keep the disease at bay.
“But I’m very fortunate that my progression has been very slow and, for the most part, I’m doing everything that I did beforehand,” he said.
In 2018, Mr. Parker snared national media attention as he completed the World Marathon Challenge, tackling seven marathons in seven continents in seven days. Last July, he took on the Calendar Club, cycling the same number of miles as the day of the month — 496 miles altogether — and has unofficially committed to the 2021 New York City Marathon, if it isn’t canceled due to COVID-19.
Dr. Schwartz often prescribes exercise to help delay the “insidious disease progression,” pointing patients to Stony Brook Southampton Hospital’s Center for Parkinson’s Disease, which runs a robust, evidence-based program built by Administrator Sarah Cohen.
“It was really astonishing to find a body of literature and a body of research that so conclusively showed that people with Parkinson’s disease who exercise regularly do better than those who don’t,” she said. “That was really exciting and motivating for me, as a physical therapist.”
Before the center launched in 2017, exercise and arts classes for Parkinson’s patients did not exist on the East End, Ms. Cohen said. She kickstarted the programming with “Paint at the Parrish,” in partnership with the Parrish Art Museum, and Rock Steady Boxing, a national affiliate taught locally, and now virtually, by Michelle Del Giorno and Seth Greiner, who instructs Ms. Barr.
“Our boxers aren’t patients. They are not defined by Parkinson’s disease,” Mr. Greiner said. “They are athletes and fighters. We are one community with a common goal: fighting the progression of this disease and supporting each other along the way.”
The programming has expanded to include chair yoga, Tai Chi and Qi Gong, singing and nutrition classes, and Urban Zen Integrative Therapy, all underwritten by the hospital and offered free. With the classes, a sense of community has grown, too, Ms. Cohen said.
“This is a group of people who support each other, we enjoy each other, we celebrate each other,” she said.
The center is hosting free virtual classes every Friday in April, in partnership with the New York Institute of Technology College of Osteopathic Medicine, and the Friedberg JCC in Oceanside, providing a well-rounded overview of what it offers, Ms. Cohen said, especially for those reeling from a recent diagnosis.
“I think you have to give people the space to come to it when they’re ready, and people are ready at different times, and I really respect that,” she said.