Several years ago, the leaders of a prominent U.S. exercise program for individuals with Parkinson’s disease confronted a significant issue: the majority of participants were Caucasian.
“We’re always inquiring about who’s absent from the room and why they’re absent,” explained David Leventhal, the program director for Dance for PD with the Mark Morris Dance Group in NYC.
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Leventhal and his team sprang into action. They recruited more instructors fluent in Spanish and Mandarin, translated promotional materials, and as a result, successfully attracted participants from Hispanic and ethnically Chinese communities. However, their efforts to recruit Black participants have not yielded the same success.
Exercise is considered essential in Parkinson’s treatment, with research indicating it can alleviate symptoms, improve mobility, flexibility, and balance. Despite this, organizers of Parkinson’s exercise programs in a few U.S. cities express challenges in recruiting Black individuals.
“In Parkinson’s, movement is medicine. Failing to engage communities in movement is akin to withholding medication,” Leventhal emphasized. “If this were a pill, there would be outrage.”
A recent Yale study demonstrated that after six months of exercise, participants’ dopamine-producing neurons, typically affected by Parkinson’s disease, showed signs of improvement.
A study published by a British medical journal this year advocated for a “paradigm shift” in which exercise is “individually prescribed as medicine” to patients in the early stages of the disease.
Eric Johnson, the founder and CEO of Movement Revolution, expressed frustration with the lack of response from his Chicago-based initiative aimed at providing a free six-month exercise program for Parkinson’s patients in the Black community.
One significant obstacle is the low awareness of disease prevalence among Black individuals due to historic underrepresentation in research. Recent studies have identified novel risk factors for Parkinson’s within this demographic.
Several studies suggest that Black individuals are less likely to receive a Parkinson’s diagnosis due to doctor biases, leading to delayed treatment.
Biases can also deter Black patients from joining exercise programs, fearing job repercussions if their health condition becomes known.
To combat misinformation and encourage participation, it is vital for Black individuals to take the lead in educating and recruiting for Parkinson’s exercise programs, as noted by Tammyjo Best, a nurse coordinator at Emory University.
Leventhal and Johnson have acknowledged the necessity of empowering underserved communities by funding programs tailored to their needs, ensuring financial autonomy.
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