{"id":3153,"date":"2024-08-12T09:17:20","date_gmt":"2024-08-12T09:17:20","guid":{"rendered":"https:\/\/healthynewsusa.com\/?p=3153"},"modified":"2024-08-12T09:17:24","modified_gmt":"2024-08-12T09:17:24","slug":"exercise-is-key-for-parkinsons-relief-but-bias-underdiagnosis-hold-black-patients-back","status":"publish","type":"post","link":"https:\/\/healthynewsusa.com\/?p=3153","title":{"rendered":"Exercise Is Key for Parkinson\u2019s Relief. But Bias, Underdiagnosis Hold Black Patients Back."},"content":{"rendered":"
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A few years ago, the organizers of one of the largest U.S. exercise programs for people with Parkinson\u2019s disease realized they had a problem: Most of the students were white.<\/p>\n

\u201cWe\u2019re always asking who\u2019s not in the room, and why are they not in the room?\u201d said David Leventhal, program director for Dance for PD with the Mark Morris Dance Group in New York City.<\/p>\n

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\u2019t been nearly as effective, Leventhal said.<\/p>\n

Exercise is considered fundamental to the treatment of Parkinson\u2019s<\/a>, with studies showing it can alleviate symptoms of the disease and improve mobility, flexibility, and balance. But people who run Parkinson\u2019s exercise programs in a handful of U.S. cities describe great difficulty in recruiting Black people.<\/p>\n

\u201cIn Parkinson\u2019s, movement is medicine. So if you\u2019re not figuring out how to engage communities in movement, it\u2019s basically like withholding medication,\u201d Leventhal said. \u201cIf this were a pill, there would be an uproar.\u201d<\/p>\n

A small study<\/a> by researchers at Yale showed that after six months of exercise, participants\u2019 dopamine-producing neurons \u2014 the kind destroyed by Parkinson\u2019s \u2014 grew healthier.<\/p>\n

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Research published by a British medical journal this year encouraged a \u201cparadigm shift\u201d<\/a> in which exercise would be \u201cindividually prescribed as medicine\u201d to patients at an early stage of the disease.<\/p>\n

That\u2019s 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\u2019s patients and increased marketing in the Black community but got little traction. \u201cIt was a challenge,\u201d he said. \u201cI\u2019ll be honest.\u201d<\/p>\n

One big hurdle: Many Black people don\u2019t even know they have the disease. The biological and genetic risk factors have long been understudied in people of African ancestry. Recent research<\/a> identified a novel risk factor for Parkinson\u2019s in the population.<\/p>\n

Studies show Black people are less likely to be diagnosed with Parkinson\u2019s. Some point to doctor bias. For example, an article published last year in Nature<\/a> concluded that bias can influence the evaluation of patients with decreased facial expressivity<\/a>, a common Parkinson\u2019s symptom in which the facial muscles harden, making it difficult to smile, raise eyebrows, and express feelings.<\/p>\n

When a white person shows up at the doctor\u2019s office with such symptoms, a doctor would likely recognize them as signs of Parkinson\u2019s, said Bernard Coley, an advocate for people with Parkinson\u2019s disease, especially those in underengaged communities. But when a Black person has the same symptoms, the doctor might interpret their behaviors as \u201cdisconnected\u201d or \u201cangry,\u201d said Coley, who\u2019s on the board of the California chapter of the Parkinson\u2019s Foundation.<\/p>\n

The Mark Morris Dance Group in New York City runs one of the nation\u2019s largest exercise programs for people with Parkinson\u2019s disease. \u201cIn Parkinson\u2019s, movement is medicine,\u201d says David Leventhal, the Dance for PD program director. (Eddie Marritz\/Mark Morris Dance Group\/Dance for PD)<\/span><\/figcaption><\/figure>\n

About 1 in 5 Black adults say they\u2019ve 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 KFF survey<\/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.<\/p>\n

Coley said that bias can lead to a delayed or missed Parkinson\u2019s diagnosis, and then once diagnosed, a Black patient might be reluctant to join an exercise program, for fear of retribution on the job.<\/p>\n

\u201cYou do not want to come off as sick or challenged,\u201d Coley said, \u201cbecause [your employer] will use any excuse they can to get rid of you.\u201d<\/p>\n

Pride and privacy are other factors, said Wendy Lewis, CEO of the Parkinson Council in Philadelphia. \u201cBlack and brown families don\u2019t share and tell their business,\u201d she said. \u201cThey don\u2019t trust their story with anybody else.\u201d<\/p>\n

An important step toward building trust and increasing participation in Parkinson\u2019s exercise programs is for Black people to lead the education and recruitment, said Tammyjo Best, nurse coordinator for the Parkinson\u2019s 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.<\/p>\n

\u201cWhen they look at me, they see themselves,\u201d she said.<\/p>\n

After his less-than-successful efforts to recruit Black Parkinson\u2019s patients into his exercise program in Chicago, Johnson concluded that the fact that he\u2019s not Black is an \u201cimportant factor.\u201d<\/p>\n

Leventhal, who runs the Parkinson\u2019s 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\u2019s dance programs, so that \u201cthey can become the holder of the purse and the puller of the purse strings and they\u2019re making those financial decisions on their own.\u201d<\/p>\n