## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [My PD Story](/living-with-parkinsons/stories) ## Breadcrumb - [Home](/) - [Living with Parkinson's](/living-with-parkinsons) - [My PD Story](/living-with-parkinsons/stories) # My PD Story ![Phyllis Higgins headshot](/sites/default/files/styles/470x550/public/images/phyllis-higgins-preview.jpg?h=5193ff8a&itok=VEc80mbY) Care Partners ## Phyllis Higgins ### My Journey Into Parkinson’s Advocacy My journey to Parkinson’s disease (PD) became deeply personal in 2020 when my husband James was [diagnosed](/understanding-parkinsons/getting-diagnosed "Getting Diagnosed") after several months of unanswered questions and three different doctors. Just months later, my father was diagnosed with [Dementia with Lewy bodies](/understanding-parkinsons/non-movement-symptoms/dementia/lewy-bodies "Dementia with Lewy Bodies") and Parkinson’s. For more than two years, I balanced full time work with frequent travel to Florida to manage his care until his passing in 2023. > Supporting both my husband and my father opened my eyes to the realities many families face especially Black families, who are often underrepresented, underdiagnosed and overlooked in Parkinson’s research and care. Finding Rush University Medical Center's Black Parkinson’s Support Group was a turning point — Rush University Medical Center is a [Parkinson’s Foundation Center of Excellence](/living-with-parkinsons/finding-care/global-care-network#Centers "Global Care Network"). It was one of the few spaces where we could speak openly about our experiences as [African Americans navigating this disease](/living-with-parkinsons/finding-care/black-community "Black Community & Parkinson’s"). Look for Phyllis in our new PSA aiming to help people find real answers to their Parkinson’s questions. [WATCH NOW](/about-us/press-room/psa) In 2023, during one of those meetings, I learned about the Parkinson’s Foundation newly redesigned Research Advocacy Program, created intentionally to address the unique needs and experiences of Black and African American people living with Parkinson’s. We were selected to join a national cohort and completed a three-day intensive training in Atlanta with about 40 other advocates who looked like me and shared my journey (read the [article here](/blog/awareness/empowering-black-pd-communities "Empowering Black and African American Communities with Parkinson’s: Education and Advocacy in Action ")). ![Phyllis Higgins with her husband](/sites/default/files/styles/380x361/public/images/phyllis-higgins-in-line.jpg?itok=ks_9AMub) Together, we learned how to elevate the patient voice, understand the research process and evaluate data through a culturally informed lens. We returned home prepared to collaborate with researchers, scientists, and government partners to ensure our lived experiences help shape the future of Parkinson’s care. Since then, advocacy has become a central part of my life. I’ve participated the past three years in Parkinson’s Foundation [Moving Day walks](https://movingdaywalk.org/) in Chicago, raising more than $12,000.00 individually. I’ve created a silent auction to raise money, spoken on panels and shared my story at work where I discovered just how many people know someone living with Parkinson’s. In 2025, I traveled to Washington, D.C. for the Parkinson’s Policy Forum to advocate “On the Hill,” urging lawmakers to seat the National Parkinson’s Council and ban paraquat. Through it all, I’ve learned the importance of caring for myself. As a [care partner](/resources-support/carepartners "For Care Partners"), I make it a priority to work out or do something that brings me joy, because I can’t support others if I’m not taking care of me. This is not a club I ever wanted to be in, but I’m here and I believe there is purpose in that. I’ve met incredible, resourceful people in what I call the Parkinson’s village. I share what I learn, I learn from others, and I remain committed to pushing for awareness, equity, and representation. James and I continue this journey with community, purpose and hope for a future where every voice — especially Black voices, is heard and valued in the fight against Parkinson’s. **Black and African American people living with Parkinson’s have unique experiences and needs. Explore tips and stories on our [Black Community & Parkinson’s page](/living-with-parkinsons/finding-care/black-community "Black Community & Parkinson’s")**. ## Related Materials Books ### [ Caring & Coping: A Care Partner’s Guide to Parkinson’s Disease ](/library/books/caring-coping) [Read Now](/library/books/caring-coping) Podcasts ### [ Episode 146: Parkinson’s Disease in the Black Community ](/library/podcast/146) [Listen Now](/library/podcast/146) Fact Sheets ### [ Coping Skills for Care Partners ](/library/fact-sheets/coping-care-partners) [Read Now](/library/fact-sheets/coping-care-partners) ## More Stories from the Parkinson's community ![Jordan and his dad](/sites/default/files/styles/340x400/public/images/jordan-levin-pd-story-hero.jpg?h=c9aea1bc&itok=iXWnmqlh) Care Partners ### [ Jordan Levin ](/living-with-parkinsons/stories/jordan-levin) READ NOW ![Kimberly O’Roark headshot](/sites/default/files/styles/340x400/public/images/Kimberly-ORoark-pd-story-hero.jpg?h=c9aea1bc&itok=3GKsm-4c) Care Partners ### [ Kimberly O’Roark ](/living-with-parkinsons/stories/kimberly-oroark) READ NOW ![Christine and her dad at a baseball game](/sites/default/files/styles/340x400/public/images/christine-rowley-pd-story-preview.jpg?h=c9aea1bc&itok=vGc6e0Op) Care Partners ### [ Christine Rowley ](/living-with-parkinsons/stories/christine-rowley) READ NOW [VIEW ALL STORIES](/living-with-parkinsons/stories) ### Share your Story Do you have an experience with Parkinson's that you would like to share? 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