Improving Parkinson’s Awareness and Outcomes Through Multigenerational Health Literacy Programs

Divya Palanisamy, MD, is passionate about improving multigenerational health literacy, helping people better understand general brain health and conditions like Parkinson’s disease (PD) long before a diagnosis. As a Parkinson’s Foundation Wesley G. McCain Movement Disorders Fellow (in honor of Dr. Lucien Côté), she works to support people with movement disorders, both as a physician and an educator.

Dr. Palanisamy completed her fellowship at Columbia University Irving Medical Center, a Parkinson’s Foundation Center of Excellence, and is currently a movement disorders specialist at SUNY Downstate Health Sciences University.

We spoke to Dr. Palanisamy about her exciting work in the PD field, and what inspires her.

What led you to Parkinson’s research? 

I was always interested in movement. I did karate as a kid, and I grew up paying very close attention to how my body moved and how subtle adjustments could have a specific effect. I also always had a love for neuroscience and the brain, and how humans use movement and the mechanics of the brain to shape the way we move throughout the world. 

After I went to medical school, I was putting those two things together and that led me to movement disorders and Parkinson’s disease. As I progressed further in medicine, I started to see myself and other physicians more as educators rather than just people who provide clinical care. A provider can really influence the way someone navigates their own identity because of an illness, and the education piece of the job allows them to help shape the course of care beyond just medications

What spurred your interest in multigenerational health education and community building?

I did a gap year program between undergraduate and medical school called City Year, which is an AmeriCorps program. I was an assistant teacher in a fourth-grade classroom. There was a clear lack of science education — the main focus was math and English. So, I started a neuroscience club, and it really took off. Not only did the kids participate, but they were telling their friends about it. It showed me that kids naturally gravitate toward being ambassadors of health information. 

I started to think about how I could take advantage of their natural inclination to spread information by empowering them to be ambassadors of health information to communities that are challenging to reach in traditional settings. That became my hypothesis. I designed a seven-week curriculum for students in partnership with St. Luke's A.M.E. Church in Harlem, and we did programming on various brain health topics. The program was my first time exploring whether the health information we deliver to children can ripple out into their communities. In piloting this program, I learned a lot and hope to carry these lessons forward.

I also helped build a community website while I was at Columbia University that was meant to be a hub for people who may see a doctor at Columbia but were looking for additional resources. This website, called Community Movers, was meant to be a place doctors could direct people who wanted to see things like a calendar of local events and nearby spiritual information and support. The project showed me, again, how providers can connect people with resources beyond clinical recommendations, which is important for building trust.

How will receiving the Parkinson’s Foundation award impact your career?

The biggest impact is a personal one. This award honors Dr. Côté [Lucien J. Côté, MD, was one of the most respected and beloved PD doctors in the U.S.], and being at Columbia, I was able to talk to some of my mentors and senior attendings there and get a sense of who he was and what the practice of movement disorders meant to him. It was so inspiring to hear about how he prioritized education, which of course resonates a lot with me. I heard stories about how he would stay for hours, just going over one detail of a presentation, and stay not only with patients but with students as well. 

It is so reassuring and very humbling to realize that the same values, the same priorities of education, of patient empowerment have been around for a long time, and, incredibly, I am just a continuation in some small way of all the work that came before me. 

Are you working on any Parkinson’s research?

I am also an American Academy of Neurology Healthcare Equity Scholar, which is a year-long program where I workshop a community health initiative similar to the one I did, but I receive feedback and develop it further. I'm building another iteration of the community health literacy outreach initiative that I ran as a pilot. This time, it'll be in association with SUNY Downstate in Brooklyn, where I work as an attending.

How do you see your work and research improving the health and lives of people with PD and their children?

What I’ve seen often is that delivery of this kind of core brain health knowledge doesn't happen until someone gets diagnosed with Parkinson’s disease. Then you're trying to deliver not only foundational brain health information, but also a diagnosis and treatment options. I think that can get overwhelming. My hope is that by delivering core knowledge much earlier, integrating it into the community through schools, students, young people, it will have some sort of foundational improvement in the types of brain health knowledge that patients come in with overall. 

Even more directly, I hope my work will highlight that brain health conditions can be approached as a family. 

When people are diagnosed with a neurodegenerative condition like PD, education and support often focus on the adults in that community, but kids are affected too. As more young people are diagnosed with Parkinson's, their children and grandchildren also need help navigating this disease. 

There aren't as many resources directed toward children. I hope that by making kids the focus for this type of outreach, we will start to see that the family support unit for patients with Parkinson's becomes stronger — on more than a direct caregiver level. It engages and empowers the family unit to come together, no matter the ages of the family members.

What gives you the greatest hope for the Parkinson’s community?

What gives me the most hope is how excited people are to engage in discussions about Parkinson’s. People are thinking creatively about how we can support people with Parkinson's beyond medication, clinical trials or clinic interventions. 

There are drawing classes, painting classes and boxing classes for people with PD. The creativity people bring to improving quality of life with this disease gives me the most hope because creativity is not something you see a whole lot of in other parts of medicine. When we think about supporting people outside the clinic, there is so much room for creativity, discussion and partnership.

It's these types of interactions and research that make me the most excited, the most hopeful, for what's to come.

Explore more topics and resources mentioned in this article:

• Join our Children of People with Parkinson’s Community Network
• Parkinson’s and Your Children/Teenagers
• Young-Onset Parkinson’s
• Frequently Asked Questions: A Guide to Parkinson’s Disease
• Find your Parkinson’s Foundation Chapter and explore PD wellness or exercise classes near you.

Find a neurologist or movement disorders specialist at Parkinson.org/Search or call the Parkinson's Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636).