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 after several months of unanswered questions and three different doctors.

Just months later, my father was diagnosed with 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. It was one of the few spaces where we could speak openly about our experiences as African Americans navigating this disease.

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).

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 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, 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.