Exercise is key for Parkinson’s relief, but bias, underdiagnosis hold back Black patients

Exercise is considered fundamental to the treatment of Parkinson’s disease. Studies show it can ease symptoms and improve mobility, flexibility and balance. But people who run Parkinson’s exercise programs in Chicago and elsewhere say it’s been hard to get Black people to sign up.

Eric Johnson, founder and CEO of Movement Revolution, says fitness centers in Chicago and the suburbs have offered a free six-month exercise program for Parkinson’s patients and tried to get the word out in Black communities but had little response.

“It was a challenge,” says Johnson, whose centers are in Edgewater, River North and four suburban locations.

David Leventhal, program director for one of the largest U.S. exercise programs for people with Parkinson’s, says he has faced a similar challenge in New York City.

Leventhal and his team at Dance for PD with the Mark Morris Dance Group hired more instructors who speak Spanish or Mandarin and produced materials in those languages. He says that boosted the number of participants from Hispanic and ethnically Chinese communities. But efforts to recruit Black participants haven’t been as effective.

“In Parkinson’s, movement is medicine,” Leventhal says. “So, if you’re not figuring out how to engage communities in movement, it’s basically like withholding medication. If this were a pill, there would be an uproar.”

A small Yale University study found that, after six months of exercise, participants’ dopamine-producing neurons — the kind Parkinson’s destroys — grew healthier.

Other research published in a British medical journal earlier this year urged for a “paradigm shift” in which exercise would be “individually prescribed as medicine” at an early stage of the disease.

One hurdle to enrolling Black patients is that many don’t even know they have the disease. The biological and genetic risk factors have long been understudied in people of African ancestry, though recent research identified a novel risk factor for Parkinson’s.

Studies show Black people are less likely to be diagnosed with the disease. An article last year in the journal Nature reported that bias can influence the evaluation of patients with decreased facial expressivity — a common Parkinson’s symptom that sees the facial muscles harden, making it difficult to smile, raise eyebrows and express feelings.

When a white person shows up with such symptoms, a doctor would probably recognize those as signs of Parkinson’s, according to Bernard Coley, an advocate for people with Parkinson’s disease, especially those in underengaged communities. But, when a Black person has the same symptoms, the doctor might interpret their behavior as “disconnected” or “angry,” says Coley, who’s on the board of the California chapter of the Parkinson’s Foundation.

Coley says bias can lead to a delayed or missed Parkinson’s diagnosis and that, once diagnosed, a Black patient might hesitate to join an exercise program out of fear about how that will be viewed at work.

“You do not want to come off as sick or challenged,” he says, “because [your employer] will use any excuse they can to get rid of you.”

Pride and privacy are other factors, according to Wendy Lewis, chief executive officer of the Parkinson Council in Philadelphia.

“Black and brown families don’t share and tell their business,” she says.

Tammyjo Best, nurse coordinator for the Parkinson’s Disease Comprehensive Care Clinic at Emory University in Atlanta, says it’s important, as a way to increase participation in Parkinson’s exercise programs, for Black people to lead the education and recruitment. As a Black person who recruits patients for clinical trials, Best says, “When they look at me, they see themselves.”

After his less than successful efforts to recruit Black Parkinson’s patients for his exercise program in Chicago, Johnson says that the fact that he isn’t Black is an “important factor.”

Leventhal has come to the same conclusion. His organization in New York is raising money to provide microgrants to groups in underserved communities to start Parkinson’s dance programs so “they can become the holder of the purse and the puller of the pursestrings, and they’re making those financial decisions on their own.”

KFF Health News is a national newsroom that produces in-depth journalism about health.