A support group at Pennsylvania Hospital not only provides resources on how to manage symptoms of Parkinson’s disease, but also fosters friendship among the participants. The Support Group for Black Patients with Parkinson’s Disease, launched in February, serves as a space where patients in an underserved community can connect with those with shared experiences.
“Many of the patients say they’ve never met someone like them with Parkinson’s,” said Amanda Cruz, a clinical research coordinator in Neurology, who leads the support group meetings. “This group builds up our patients’ support systems and creates a sense of community.”
Research shows that Black people are diagnosed with Parkinson’s disease much later than white individuals—one of the reasons being that patients may only seek medical attention when their symptoms, such as tremor or muscle stiffness, are more pronounced. Cruz explained how most people think these symptoms have to do with a normal part of aging and don’t realize they’re neurological.
“They may not seek immediate medical attention because they may not consider milder symptoms a priority, and there is a historical lack of trust in [medical] institutions,” Andrew Siderowf, PhD, director of the Parkinson’s Disease and Movement Disorders Center, told the Philadelphia Inquirer.
At the monthly meetings, with attendees joining either in-person or virtually from their homes, the patients discuss how they’ve been handling their symptoms and how their families have been involved in their care. They also offer suggestions for meeting topics, such as hearing from a neurologist to understand how this condition impacts the brain, and a dietitian to learn what kinds of foods could be beneficial for patients with Parkinson’s.
There is “never an awkward silence” at the meetings, said Cruz. “Some patients may feel scared or in denial about their diagnosis. It’s nice to see them laughing and joking with each other.”
Support continues beyond the monthly meetings. The patients stay in touch over emails and phone calls to check in on each other.
“If someone calls me and tells me they’re having a rough time, I give them advice and tell them to think of a peaceful place. I think of being on a beach,” said C.J., one of the support group patients.
In November, the group formed a team called “On the Move” for the Parkinson Council’s Walk to Stamp Out Parkinson’s event, raising awareness and more than $3,400 to support local families impacted by this disease.
The group hopes to continue gathering for activities, which will be supported by a recent Penn Medicine CAREs grant. Cruz applied for and received a grant through the CAREs program, which provides funding for staff and their community initiatives across the regions Penn Medicine serves, including both regional and international efforts. The grant will also go towards providing food at meetings and funding for ridesharing services, for patients who are unable to drive to in-person sessions.
“This is a group that needed to be had,” said Cruz. “I, myself, am a minority, so it was important to me to create a group for others where they can feel supported by people who can relate to them.”
Changing the picture for dementia
Penn Medicine is working to address the challenges patients and families face following a neurodegenerative disease diagnosis, from experiencing cognitive decline, to grappling with financial and emotional losses as caregivers navigate the journey alongside their loved ones. Comprehensive centers, like the Penn Memory Center, play a pivotal role in helping to navigate these challenges, providing educational resources, support services, and access to clinical trials for treatments on the horizon. Read more about Penn’s work to dismantle barriers to care in
Penn Medicine magazine.