A few years ago, the organizers of one of the largest U.S. exercise programs for people with Parkinson鈥檚 disease realized they had a problem: Most of the students were white.
鈥淲e鈥檙e always asking who鈥檚 not in the room, and why are they not in the room?鈥 said David Leventhal, program director for Dance for PD with the Mark Morris Dance Group in New York City.
Leventhal and his team went to work. They hired more instructors who spoke Spanish or Mandarin and translated marketing materials, which boosted the number of participants from Hispanic and ethnically Chinese communities. But efforts to recruit Black participants haven鈥檛 been nearly as effective, Leventhal said.
Exercise is considered , with studies showing it can alleviate symptoms of the disease and improve mobility, flexibility, and balance. But people who run Parkinson鈥檚 exercise programs in a handful of U.S. cities describe great difficulty in recruiting Black people.
鈥淚n Parkinson鈥檚, movement is medicine. So if you鈥檙e not figuring out how to engage communities in movement, it鈥檚 basically like withholding medication,鈥 Leventhal said. 鈥淚f this were a pill, there would be an uproar.鈥
A by researchers at Yale showed that after six months of exercise, participants鈥 dopamine-producing neurons 鈥 the kind destroyed by Parkinson鈥檚 鈥 grew healthier.
Research published by a British medical journal this year in which exercise would be 鈥渋ndividually prescribed as medicine鈥 to patients at an early stage of the disease.
That鈥檚 why people like Eric Johnson, founder and CEO of Movement Revolution, are frustrated. Johnson said his Chicago-area initiative offered a free six-month exercise program for Parkinson鈥檚 patients and increased marketing in the Black community but got little traction. 鈥淚t was a challenge,鈥 he said. 鈥淚鈥檒l be honest.鈥
One big hurdle: Many Black people don鈥檛 even know they have the disease. The biological and genetic risk factors have long been understudied in people of African ancestry. identified a novel risk factor for Parkinson鈥檚 in the population.
Studies show Black people are less likely to be diagnosed with Parkinson鈥檚. Some point to doctor bias. For example, an concluded that bias can influence the evaluation of patients with , a common Parkinson鈥檚 symptom in which the facial muscles harden, making it difficult to smile, raise eyebrows, and express feelings.
When a white person shows up at the doctor鈥檚 office with such symptoms, a doctor would likely recognize them as signs of Parkinson鈥檚, said Bernard Coley, an advocate for people with Parkinson鈥檚 disease, especially those in underengaged communities. But when a Black person has the same symptoms, the doctor might interpret their behaviors as 鈥渄isconnected鈥 or 鈥渁ngry,鈥 said Coley, who鈥檚 on the board of the California chapter of the Parkinson鈥檚 Foundation.
About 1 in 5 Black adults say they鈥檝e been treated unfairly or with disrespect by a health care provider in the past three years because of their race or ethnic background, compared with 3% of white adults, according to a last year. The survey also found that 6 in 10 Black adults say they prepare for possible insults and feel they must be careful about their appearance during health care visits, while 1 in 3 white adults say they feel the same way.
Coley said that bias can lead to a delayed or missed Parkinson鈥檚 diagnosis, and then once diagnosed, a Black patient might be reluctant to join an exercise program, for fear of retribution on the job.
鈥淵ou do not want to come off as sick or challenged,鈥 Coley said, 鈥渂ecause [your employer] will use any excuse they can to get rid of you.鈥
Pride and privacy are other factors, said Wendy Lewis, CEO of the Parkinson Council in Philadelphia. 鈥淏lack and brown families don鈥檛 share and tell their business,鈥 she said. 鈥淭hey don鈥檛 trust their story with anybody else.鈥
An important step toward building trust and increasing participation in Parkinson鈥檚 exercise programs is for Black people to lead the education and recruitment, said Tammyjo Best, nurse coordinator for the Parkinson鈥檚 Disease Comprehensive Care Clinic at Emory University in Atlanta. As a Black person who recruits patients for clinical trials, Best said she often overcomes mistrust.
鈥淲hen they look at me, they see themselves,鈥 she said.
After his less-than-successful efforts to recruit Black Parkinson鈥檚 patients into his exercise program in Chicago, Johnson concluded that the fact that he鈥檚 not Black is an 鈥渋mportant factor.鈥
Leventhal, who runs the Parkinson鈥檚 exercise program in New York, has come to the same conclusion. His organization, the Mark Morris Dance Group, is fundraising to provide microgrants to groups in underserved communities to start Parkinson鈥檚 dance programs, so that 鈥渢hey can become the holder of the purse and the puller of the purse strings and they鈥檙e making those financial decisions on their own.鈥
