## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [Finding Care](/living-with-parkinsons/finding-care) ## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [Finding Care](/living-with-parkinsons/finding-care) # Black Community & Parkinson’s ## 💡 Quick Summary - Black and African American people with Parkinson’s face later [diagnoses](/understanding-parkinsons/getting-diagnosed "Getting Diagnosed"), less access to specialists and barriers to research participation due to health disparities. - Early diagnosis, working with a trusted PD specialist, [exercise](/living-with-parkinsons/treatment/exercise "Exercise") and building a support system help manage symptoms and improve quality of life. - Inclusive research, such as [PD GENEration](/advancing-research/our-research/pdgeneration "PD GENEration: Powered by the Parkinson’s Foundation") and community resources empower the Black PD community and improve access to care and information. ![Black son with his arm wrapped around his mother](/sites/default/files/styles/no_sizing/public/images/BlackCommunity.jpg?itok=JQJXU1wt) Black and African American people diagnosed with Parkinson’s disease (PD) have unique experiences and needs when it comes to living with this disease. Many of the Black and African American members of the PD community often face health disparities, which can lead to decreased access to resources, care and research opportunities. The Parkinson’s Foundation works to bring awareness to these disparities so we can make health care more accessible across the PD community, through reaching and supporting [populations of focus](/about-us/vision-mission/diversity-equity-inclusion "Our Commitment to Diversity, Equity & Inclusion"), including those who identify as Black and African American. With information and awareness, all people with Parkinson’s can be empowered to advocate for the care and quality of life they deserve. ## Living with Parkinson’s An early **[Parkinson’s diagnosis](/understanding-parkinsons/getting-diagnosed "Getting Diagnosed")** is the first step to getting PD symptoms under control and living well with the disease. Getting a PD diagnosis is commonly the first obstacle many Black people with PD experience. > **Research shows that Black people with PD are diagnosed at a later disease stage than white people.** Research also shows that Black people are less likely to be diagnosed compared to other racial and ethnic groups. This is in large part due to Black communities being historically excluded in the healthcare system and research studies. Because of this, the full impact of the disease within the community is still unknown. Since these factors can negatively influence health outcomes, it is important to be aware of the **[early sign of Parkinson’s](/understanding-parkinsons/10-early-signs "10 Early Signs")** and speak to your doctor if you notice symptoms. ### Tips for Living Well with Parkinson’s When you’re ready, here are tips to help you start managing this disease early on: - **Find a specialist you trust.** Ask your spouse or family member to accompany you to appointments. - **Exercise.** Physical activity helps maintain and improve mobility, flexibility, balance and non-movement symptoms such as depression. [Find your Chapter](/resources-support/find-your-chapter "Find Your Chapter") for a list of local and free exercise and wellness classes. - **Join a Parkinson’s research study.** Explore the different opportunities to get involved with PD research and consider becoming a [research advocate](/advancing-research/advocate-research "Advocate for Research"). - **Build your local support system.** Finding a support group or spiritual advisor that works alongside you can help fight the isolation that can accompany Parkinson’s. - [Explore free resources.](/resources-support "Resources & Support") Find information and tools designed to help empower you. For help building your Parkinson's care team, finding a specialist and exercise class near you, call our [Helpline](/resources-support/helpline "Helpline") at 1-800-4PD-INFO (1-800-473-4636). ## Stories from the Black PD Community ![Christina Weaver Jackson and her father](/sites/default/files/styles/340x400/public/images/Christina-Weaver-Jackson.jpg?h=c9aea1bc&itok=IXdSFjWr) Care Partners ### [ Christina Weaver Jackson ](/living-with-parkinsons/stories/christina-weaver-jackson) READ NOW ![volunteers blog charles harris](/sites/default/files/styles/340x400/public/images/volunteers-blog-charles_harris.png?h=5193ff8a&itok=CNDepBLY) Health Professionals ### [ Charles Harris ](/living-with-parkinsons/stories/charles-harris) READ NOW ![Kim Gamble headshot](/sites/default/files/styles/340x400/public/images/kim-gamble.png?h=534f1021&itok=ebsqKETl) Health Professionals ### [ Kim Gamble ](/living-with-parkinsons/stories/kim-gamble) READ NOW ## Care Working with specialists who understand and treat Parkinson’s can help better manage symptoms, reduce complications and improve overall quality of life. Black and African Americans with PD are often less likely to see a PD specialist due to limited access to quality care. [Learn more about how to build your care team.](/living-with-parkinsons/finding-care/building-your-team "Building Your Care Team") It can take time to build trust with your expert care team. Consider asking your spouse or a family member to attend doctors’ appointments with you. They can assist you in communicating, taking notes and offering support as you build trust with your PD doctor. ### Addressing Mental Health Keep in mind that [non-movement symptoms](/understanding-parkinsons/non-movement-symptoms "Non-Movement Symptoms"), like [depression](/understanding-parkinsons/non-movement-symptoms/depression "Depression") and [anxiety](/understanding-parkinsons/non-movement-symptoms/anxiety "Anxiety"), are 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 culturally competent providers can make it difficult to access mental health services and support. You are not alone. There are different types of care professionals who can offer support including psychologists, psychiatrists, therapists, mental health counselors, social workers, as well as your neurologist or movement disorders specialist. ### Find Expert Care Near You For help building your Parkinson's care team and finding a specialist near you, call our Helpline at 1-800-4PD-INFO (1-800-473-4636). [CONTACT US](/resources-support/helpline) ![tyaishablount-dillon](/sites/default/files/styles/535x680/public/images/tyaishablount-dillon.jpg?h=c9aea1bc&itok=X67rwiJu) MY PD STORY: Tyaisha Blount-Dillon Parkinson’s stretches you. It can force you to do things that you never thought you'd have the ability to do. You just need to develop ways to fight through it. People may feel that they cannot improve, but I am living proof that you can. [ READ Tyaisha's STORY ](/living-with-parkinsons/stories/tyaisha-blount-dillon) ## Research Black and African American people have been historically excluded from research and recruitment efforts. Financial burdens to participate, social factors including geographic location, and feelings of mistrust towards researchers and physicians stemming from a history of discriminatory and harmful practices have all contributed to the exclusion from research. No two people with PD are identical, which is why making research inclusive is critical to accelerating Parkinson’s breakthroughs. Through studying health disparities and prioritizing diversity among study participants, researchers can better understand how PD affects each population, leading to more accurate diagnoses and better outcomes for the entire community. Through its genetics study, [PD GENEration: Mapping the Future of Parkinson’s Disease](/advancing-research/our-research/pdgeneration "PD GENEration: Powered by the Parkinson’s Foundation"), the Parkinson’s Foundation is working to increase diversity in genetics research and making genetic testing accessible to everyone with PD. The study offers free genetic counseling in English and Spanish, and participation can be in person or at home. [Join the study.](/advancing-research/our-research/pdgeneration "PD GENEration: Powered by the Parkinson’s Foundation") #### Working with Morehouse School of Medicine to Diversify Genetic Data With a shared value of improving health disparities that Black people with PD face, the Parkinson’s Foundation partnered with Morehouse School of Medicine, making it the first historically Black institution of medicine to become a PD GENEration. [READ MORE](/blog/research/morehouse-school-medicine) ![Chantale at a Morehouse event ](/sites/default/files/styles/298x194/public/images/Chantale-Morehouse-Blog.jpg?h=a70bbd98&itok=1HFnGSu9) [Join a Parkinson’s research study today](/advancing-research/join-study "Join A Study") and explore our [research advocate program](/advancing-research/advocate-research "Advocate for Research") to help make research more efficient and effective. The Parkinson’s Foundation trains research advocates how to work alongside researchers and government partners to share experiences while advocating and informing key decisions about PD treatments and development. ## Building A Support Team Living with a progressive 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. [Telling family and friends about your PD diagnosis](/blog/awareness/children "Parkinson's Q&A: How do I talk to my children about Parkinson's disease?") can be challenging, let alone sharing details about your symptoms and [treatment](/living-with-parkinsons/treatment "Treatment") plan. 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. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find one near you. Staying connected with others in the PD community can relieve stress and lead to new friendships. ## Making an Impact ![Book Cover: Parkinson's Disease & the Black Community: How to Live Better](/sites/default/files/styles/380x361/public/images/bdopfbookcover.jpg?itok=_maghOJp) The Parkinson’s Foundation works to remove barriers to care, make research more inclusive, and support [populations of focus](/about-us/vision-mission/diversity-equity-inclusion "Our Commitment to Diversity, Equity & Inclusion") through information and resources. - Check out the book [*Parkinson’s Disease and the Black Community: How to Live Better*](https://blackdoctor.org/parkinsons-disease-black-community-how-to-live-better/), co-published by the Parkinson’s Foundation and BlackDoctor.org. - View our two-part series [Parkinson's Disease and the African American Community](https://www.youtube.com/watch?time_continue=3&v=815F8F_9Txw&embeds_referring_euri=https%3A%2F%2Fwww.parkinson.org%2F&source_ve_path=MjM4NTE&feature=emb_title). These videos explore the myths associated with PD in the Black community, available treatments and the role faith and spirituality. - Explore [Parkinson’s Disease Storybook](https://www.neurology.columbia.edu/patient-care/specialties/movement-disorders/pd-movers-we-keep-moving-storybook), a compilation of narratives of Black and African Americans with PD and care partners, produced by Columbia University Irving Medical Center, a Parkinson's Foundation [Center of Excellence](https://www.parkinson.org/living-with-parkinsons/finding-care/global-care-network#Centers). ![Video: Parkinson's Disease & the Black Community: How to Live Better](/sites/default/files/styles/820x460/public/images/video-pdafricanamericancommunity.png?h=17c3cd98&itok=KEDzAi_8) ### Community Grants Working Towards Change The Foundation’s [community grant program](/resources-support/community-grants "Community Grants") funds programs that reach the Black and African American members of the PD community. - ### 2023 Featured Grantees ### Promoting Health Equity in Parkinson Care for Black Families through Faith-Based Partnerships **Atlanta, GA** Fayron Epps, PhD, oversees this impactful grant through Emory University’s Alter program, which addresses structural inequities affecting Black people with PD and responds to the needs of their family care partners and people living with various forms of dementia (including [Parkinson's disease dementia](/understanding-parkinsons/non-movement-symptoms/dementia "Dementia")). The mission is to increase dementia awareness, develop a supportive and faith-based, dementia-friendly infrastructure and create communities to support Black families facing dementia by partnering with places of worship. The long-term goal of Alter is for the infrastructure to be widely adopted in similar communities across the U.S. to support care partners and reduce health disparities related to Parkinson's and dementia. ### It Takes a Village: Parkinson’s Disease Educational Program for the San Francisco Bay Area Latinx and African American Communities **San Francisco, CA** Jill Ostrem, MD, and the team at the University of California, San Francisco are running an educational symposium to reach Latinx and African American people living with PD and their families in the San Francisco Bay Area. Topics include PD symptoms, with emphasis on [cognitive](/understanding-parkinsons/non-movement-symptoms/cognitive "Cognitive Changes") and mood disorders because Hispanic and African American people with PD experience higher rates of PD-related dementia and psychiatric symptoms compared to white people with PD. Since caring for a person with PD takes a village, informal [caregivers](/resources-support/carepartners "For Care Partners"), such as family members, are encouraged to participate and play an integral role in this symposium, which will provide caregiver education, support and resources. [View all 2023 grantees](/sites/default/files/documents/2023-cg-recipients.pdf "2023-cg-recipients.pdf") #### Looked Over, Left Behind: Black Americans Face Gaps in Parkinson’s Care This U.S. News & World Report article addresses the barriers to care and a lack of awareness about Parkinson’s disease for the Black community. Explore the story of one family and hear from PD doctors helping address this national disparity in care. [Read More](https://www.usnews.com/news/health-news/articles/2023-05-11/black-americans-face-gaps-in-parkinsons-disease-care) ![Halston Mathis with her stepfather](/sites/default/files/styles/298x194/public/images/Halston-in-the-news.png?h=548d52c3&itok=JNRtjSpE) ## Related Materials Podcasts ### [ Episode 39: PD Across Race & Ethnicity: Outreach to the African American Community ](/library/podcast/39) [Listen Now](/library/podcast/39) Videos & Webinars ### [ Neuro Talk: PD GENEration and the Black Community ](/library/video/pdgene-black-community) [Watch Now](/library/video/pdgene-black-community) Podcasts ### [ Episode 146: Parkinson’s Disease in the Black Community ](/library/podcast/146) [Listen Now](/library/podcast/146) ## Related Blog Posts ![Headshot of Ashley Rawls](/sites/default/files/styles/500x360/public/images/ashleyrowls-preview.png?h=9105c3fe&itok=eIe95U26) Raise Awareness ### [ Local Parkinson’s Program Reaches Black and African American Community ](/blog/awareness/program-reaches-black-african-american-community) READ NOW ![Headshot of Shah Hiral](/sites/default/files/styles/500x360/public/images/shahhiral-preview.jpg?h=9105c3fe&itok=i-vB6nEX) Advancing Research ### [ Advancing Mental Health Care in Parkinson’s ](/blog/research/advancing-mental-health-care) READ NOW ![Dr. Branson, Movement Disorders Specialist](/sites/default/files/styles/500x360/public/images/Dr.Branson-blogpreview.png?h=fb0bd1b2&itok=9F1R9tvN) Advancing Research ### [ Partnering with Morehouse School of Medicine to Diversify Genetic Data ](/blog/research/morehouse-school-medicine) READ NOW ### Connect with Others Explore our PD Conversations discussion groups to find answers or talk to others going through similar experiences. [Join Now](https://www.pdconversations.org/) ### Share Your Story Empower others navigating Parkinson’s when you share your story about living with Parkinson’s. [SUBMIT YOUR STORY](/living-with-parkinsons/my-pd-story/submit) - Share on Facebook - Share on X - Share on LinkedIn