Black Community & Parkinson’s

Black and African American people diagnosed with Parkinson’s disease (PD) have unique experiences and needs when it comes to living with this disease. Challenges to PD management may include awareness of PD symptoms, difficulty finding PD specialists, and health and economic inequities that may interfere with access to care. These inequities also directly impact those who care for them.

The Parkinson’s Foundation works towards bringing awareness to these disparities so we can make health care more accessible. With information and awareness, all people with Parkinson’s can be empowered to advocate for the care and quality of life they deserve.

Diagnosis

An early Parkinson’s diagnosis is the first step to getting Parkinson’s symptoms under control and living well with Parkinson’s. Getting a PD diagnosis is also one of the first obstacles many in the Black PD community experience.

Research shows that Black people with PD are diagnosed at a later disease stage than white people.

Research also shows that Black people with PD are diagnosed at a later disease stage than white people and are less likely to be diagnosed compared to other racial and ethnic groups. However, this may be due to an underrepresentation of Black patients in the healthcare system, underdiagnosis, or a delay in diagnosis for the Black community.

Although these factors can negatively influence health outcomes, there are steps you can take to advocate for yourself to live a better life with PD today. When you notice an early sign of Parkinson’s, speak to your doctor and ask for a referral to see a specialist.

Care

Working with specialists who understand and treat Parkinson’s can help you better manage your symptoms and reduce complications. People in the Black community are often less likely to see a PD specialist. Learn more about how to build your care team.

It can take time for you and your care partner to build trust with your expert care team. Consider asking your spouse or family member to attend doctors’ appointments with you. They can assist you in communicating, taking notes and offering support as you built trust with your PD doctor.

Remember that non-movement symptoms, like depression and anxiety, can also be symptoms of Parkinson’s. Maintaining your emotional health will help you maintain your physical health.

The cultural stigma associated with mental health challenges, the expectation that mental health symptoms should remain private, and the lack of providers who are culturally sensitive to the needs of Black people can make it difficult to access mental health services and support. You are not alone. There are different types of healthcare professionals who can offer support including psychologists, psychiatrists, therapists, mental health counselors, social workers, as well as your movement disorder specialist and neurologist.

Research

Because Black people with PD are underrepresented in Parkinson's research, the full impact of Parkinson's on the Black and African American community is unknown. There is no current estimate of how many Black people are living with Parkinson’s in the U.S.

Limited research recruitment efforts, financial burdens to participate, social factors of health such as residential location, and valid feelings of mistrust towards researchers and physicians stemming from historical discriminatory and harmful research practices have all contributed to the exclusion of the Black community in research.

Research is vital to helping us better understand Parkinson’s and will one day lead to a cure. Diversity in research is essential to setting the foundation to find new treatments. Studying health disparities, conducting more targeted and inclusive research, and more accurately diagnosing PD in the Black community will help us learn more.

Including diversity among participants in PD research is critical because it will advance our understanding of how the disease specifically affects these populations and which treatments are most effective. With this information, researchers can identify and develop new treatments and medications that better serve the unique needs of these communities.

Join a Parkinson’s research study today and explore our research advocate program to help make research more efficient and effective. Consider enrolling in our genetics study, PD GENEration: Mapping the Future of Parkinson’s disease. This study is looking to figure out how gene changes cause Parkinson’s disease in different people. Your results may help you enroll in more clinical trials and help drive advancements in how we treat Parkinson's in the future.

Building A Support Team

Living with a chronic disease can be overwhelming, and finding the support you deserve can take time. Remember that emotional well-being is individual to each person. Give yourself the opportunity to try different things as you find the wellness routine that works for you.

Do not underestimate the impact of a strong support network for you and your care partner. Choosing to disclose a PD diagnosis with your loved ones can be challenging, let alone discussing your experiences with the disease in detail. It is normal to have hesitations about opening up. However, sharing your feelings with your family and friends can provide opportunities for connection, comfort, understanding and support.

Consider joining a support group within the PD community. These groups can provide the opportunity to talk about shared experiences and can help prevent feelings of isolation. Support groups can also be particularly helpful in identifying educational materials, PD specialists, and other community resources. Staying connected with others in the PD community can relieve stress and lead to new friendships.

Tips for Black People with Parkinson’s

These tips can help you navigate PD:

• Address early symptoms. When you or a loved one experiences an early sign of Parkinson’s, speak to your primary care physician and discuss seeing a specialist.
• Find a specialist you trust. Ask your spouse or family member to accompany you to appointments. It’s never too late to find a PD specialist you trust.
• Join a Parkinson’s research study. Explore the different opportunities to get involved with Parkinson’s research.
• Become a research advocate. Help Parkinson’s researchers improve their understanding of PD and find new treatments
• Find support in your area. Finding a support group or spiritual advisor that works alongside you can help fight the isolation that sometimes accompanies Parkinson’s.

Making an Impact

The Parkinson’s Foundation works to remove barriers to care, make research more inclusive, and ensure that information and resources are always accessible.

Together with BlackDoctor.org, the Parkinson’s Foundation co-published the book Parkinson’s Disease and the Black Community: How to Live Better to raise awareness. The Foundation’s Learning Institute is also hosting a training for the Black PD community, where participants will learn about the importance of PD research, and gain leadership and advocacy skills to confidently interact with researchers and the community.

View our two-part series “Parkinson's Disease and the African American Community,” hosted in 2022. These events explored the myths associated with Parkinson’s in the Black community, discussed available treatments and the role faith and spirituality play.

Explore Parkinson’s Disease Storybook, a compilation of narratives of African American and Black individuals and caregivers who are living with PD, produced by Columbia University Irving Medical Center, a Parkinson's Foundation Center of Excellence. 

The Foundation’s community grant program also funds programs that reach the Black community, such as the 2021 program, “Parkinson’s Disease Outreach Program to African Americans in Alachua County.”