Parkinson’s advocate pushes for greater awareness in Black community

When Phyllis Higgins’ father Johnnie Franklin continued to arrive for his doctor’s appointments in mismatched clothes and sneakers and skipping his trademark cologne, his physician alerted Phyllis that she suspected he might have dementia.

Johnnie was always an impeccable dresser, so while this was a subtle change in behavior, it was enough to concern his doctor and motivate Phyllis to visit him in Florida where they consulted a neurologist.

Johnnie was diagnosed with Parkinson’s disease and Lewy body dementia; although two distinct disorders, they share the same underlying changes in the brain and very similar symptoms. Every other month for more than two years, Phyllis traveled from her home in Streamwood to Miami to care for her dad until he passed away in May of 2023.

As her father’s caregiver, Phyllis drew on her experience as an advocate and care partner for her husband James, who has been living with Parkinson’s since January of 2020.

The disease has weakened James’ legs, leaving him dependent on a walker and forcing him into early retirement. Phyllis and James have learned how to adjust their daily activities to accommodate James’ health and have altered their plans for the future.

The changes have empowered Phyllis to become a Parkinson’s advocate in the Black community. “It’s critical that Black people are represented in research studies, they understand their unique risk factors for PD, that we reduce stigma within Black and Brown communities and people of color have ample opportunities to seek support from others who look like them.”

According to the Parkinson’s Foundation, getting a diagnosis is commonly the first obstacle many Black people with Parkinson’s disease experience. In fact, research shows that Black people with Parkinson’s are diagnosed at a later disease stage than white people. Also, 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 health care system and research studies.

As Parkinson’s Foundation Research Advocates, last year Phyllis and James participated in an event held in Atlanta in collaboration with Morehouse School of Medicine. The event sought to engage and understand the needs of the Black Parkinson’s community and taught attendees how to work alongside researchers and advocate for changes in research.

Phyllis has shared her knowledge during a church presentation and soon will be interviewed about Parkinson’s on her employer’s internal podcast.

And on Oct. 5, Phyllis will gather at Soldier Field with friends and family as “Team Steady Steppers Striders and Shakers” at Moving Day Chicago, an annual walk to benefit the Parkinson’s Foundation. The event honors people living with Parkinson’s disease, raises awareness, supports the life-changing work of the Parkinson’s Foundation and celebrates movement proven to help manage PD symptoms. Moving Day will feature a family-friendly walk along the lakefront, information booths, kids’ area and physical activities, such as boxing and dance.

When Phyllis participated in Moving Day 2023, she alone raised nearly $1,700.

Phyllis has bigger plans for Moving Day Chicago 2024. Recently, she hosted an educational and social fundraiser, which raised $1,500. These funds will be added to donations from friends and family — and matched by her employer, Zurich. And already, Phyllis’s team has surpassed their $6,000 fundraising goal, collecting $7,600 to date.

To learn more about Parkinson’s disease and register for Moving Day Chicago, visit movingdaywalk.org/event/moving-day-chicago/.