Valerie Gibson, PT, DPT, is founder and CEO of the Advanced Physical Therapy and Rehabilitation Center. Credit: Photo courtesy of Valerie Gibson

By Valerie Gibson

Too many African Americans with Parkinson’s disease experience invisibility when it comes to their medical care.  In fact, no one in the Parkinson’s healthcare community even has an estimate as to the number of Blacks in this country living with the disease.  As a Black neurological physical therapist who has treated Parkinson’s patients for over 40 years, I am painfully aware of the pervasive racial disparities in healthcare that deprive Black Parkinson’s patients of the care they need and deserve.  

Parkinson’s is a disorder of the central nervous system that affects movement and coordination.  Caused by nerve cell damage in the brain, it is a chronic, progressive disease in which motor symptoms continue to worsen and become more debilitating.  Typically, Black patients with Parkinson’s are first seen at later stages of their disease than White patients.  

Much of this disparity is attributable to an inequitable healthcare system.  While there is no known cure for Parkinson’s, physical, occupational and speech therapy, combined with certain medications, are critical to effective treatment.  A recent study commissioned by the Michael J. Fox Foundation found that profound disparities exist in Black Parkinson’s patients’ access to care, treatment, and rehabilitation. (Racial and Ethnic Disparities in Parkinson Disease, A Call to Action (2023)). Among the study’s findings were that Blacks were much more likely to be previously undiagnosed with Parkinson’s disease and/or misdiagnosed with a different movement disorder, delays in diagnosis often result in Black patients presenting for care at more advanced stages of Parkinson’s and therefore exhibiting worse symptoms as compared with White patients, and there exists a glaring lack of diversity in Parkinson’s clinical trials.  

These findings mirror my own observations and experience in treating Blacks with Parkinson’s.  Case in point – a Black patient was told by her doctors after her medications were no longer effective that “there was nothing more” that could be done for her even though they failed to refer her for any movement disorder therapy.  She is currently undergoing a vigorous physical therapy regimen in my clinic and showing marked improvement as a result.

What can we do to provide Blacks living with Parkinson’s the same level of care given to their White counterparts?  We must work more effectively to educate the African-American community and medical providers to recognize Parkinson’s symptoms in Blacks at the earliest stage possible.  Emphasis must be on earlier and accurate diagnosis – the earlier the diagnosis and beginning of treatment, the better chance to mitigate symptoms and arrive at an improved outcome.  Timely referrals must be made to physical therapists and other movement disorder specialists as their programs can make a substantial difference in the well-being of Black Parkinson’s patients.  Efforts must be made to identify and recruit more Blacks to participate in clinical trials to facilitate better research into how the disease affects Blacks specifically.  

Finally, foundations and other organizations must grant funds for programs designed to treat and rehabilitate the African-American Parkinson’s community.  Recently, the Parkinson’s Foundation denied applications for grants for physical therapy programs for Black patients specifically, while continuing to fund therapy and wellness programs treating other demographic communities.  It is past time for the Parkinson’s Foundation to stop paying lip-service to being inclusive and to become serious about funding programs that would provide better outcomes for Blacks with the disease.

Every Parkinson’s patient, regardless of race or ethnicity, is entitled to be equally visible to the medical community and should be given the highest quality care possible to enable them to live a life with dignity.   Unequal healthcare is not only unjust, it is inhumane.  We must do better. 

Valerie Gibson, PT, DPT is founder and CEO of the Advanced Physical Therapy and Rehabilitation Center. 

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