A Columbia Neurologist is Humanizing Parkinson’s Care and Research
As a young neurologist, Hiral Shah, MD, didn’t envision launching a national Parkinson’s disease movement. But she admits she has always been the kind of person who champions the vulnerable. “I am quite vocal and upset when I observe injustice,” says Dr. Shah.
That injustice was apparent at her own clinic, where very few of her patients were Black or Brown despite being located in the multicultural neighborhood of Washington Heights.
In 2021, Dr. Shah created PD Movers to address that gap and provide culturally informed Parkinson’s books, educational videos, and webinars for Black and Brown communities. PD Movers has published two books featuring the personal stories of Black and Spanish-speaking families living with Parkinson’s. The latest book, “The PD Movers – We Participate in Research,” shares the experiences of Black individuals with Parkinson’s clinical research.
Dr. Shah tells the story of how it all started.
My father moved from India to the United States in the ‘70s for his training as a physician. Almost every year growing up, we would go back to India, which was and still is a country where you see a juxtaposition of great wealth and access alongside real struggle. People who didn't have the means simply didn't get the care they needed.
My dad would often take unused sterile instruments that were probably going to be discarded in the United States and pack them in our suitcases, and we would take them to India.
It made me aware of the fact that one's experience is not necessarily the experience of all in one's community—that access to health care is not equal. I have always been drawn to understanding how we can rectify that and ease the suffering of those less fortunate.
Years later, as a physician at an academic medical center, I’m exposed to a broad range of research to advance our understanding of health conditions and their management—and I’ve been concerned about who is being left behind.
When we first started PD Movers, the idea was to humanize the experiences of Black and Brown people living with Parkinson's, to think about who they were before the diagnosis, and demonstrate how that lived experience influences how they seek and receive care.
I partnered with a church in Harlem, where I observed how storytelling and giving testimony was a way that people felt supported and respected. I realized that storytelling would be a powerful mechanism to share health information in communities with low health literacy in a way that would be easily digestible, as opposed to the complex ways in which physicians often communicate; that’s how the idea for the first book came about.
“While some aspects of living with Parkinson’s are universal, there are some differences in how various communities experience stigma.”
In 2025, we launched a second PD Movers book specifically for the Spanish-speaking community. While some aspects of living with Parkinson’s are universal, there are some differences in how various communities experience stigma. We are working on a second Positivos book that will include a component about how couples navigate life with Parkinson’s—often there’s tension when one person has the condition and the other is trying to be supportive. Next, we will focus on resources that will focus on mental and spiritual well-being.
As people in the community who had first helped create PD Movers learned about Parkinson's, questions about health disparities—and what we can do to correct them—naturally bubbled up. Soon, the conversation began to focus on how research can change the trajectory of health disparities—not just by adding numbers to trials but also by engaging the community to select outcome measures that are relevant to the community.
In response to these discussions, we decided our latest book would focus on stories that touch on the benefits and challenges of participating in research. On the benefits side, we want people from under-engaged communities to know that participating in research may provide access to new treatments, and the findings from these studies may be more generally applicable.
Among the challenges, many patients from under-engaged communities who were told they did not qualify for a particular research study perceived this as a rejection, and it was really demoralizing. We included another story of a gentleman living with Parkinson's who had a tremor and was taking part in a study that involved MRI scans. During a scan, the research tech asked him to stop moving—but moving is inherent to his condition. We need to ask what we can do to ensure that the process is more respectful, collaborative, and inclusive so that someone knows that if they did not qualify for one trial there may be a future opportunity to participate.
Another objective of the book is to demystify what research is. Most people, if you ask them what it means to participate in research, they don't really know. It can be anything from filling out a survey to being interviewed, donating specimens, or getting an investigational drug.
It’s also important to acknowledge the muddied history of research and how we’re taking steps to ensure that people who participate are not being exploited. The book explains the participant’s rights and the guardrails that protect their privacy and security.
“I think that we all want a future where there's less Parkinson's. But that advancement will require us to make some progress scientifically.”
Today, we get our free PD Movers books out locally and nationally through word of mouth, professional networks, and advocacy groups. We have distributed more than 8,500 copies of the first PD Movers book, and all of our resources can be downloaded. And as we strengthen our network, we are always listening to what people are saying about the challenges they are facing so we know what to focus on next. Our aim is to make sure that people have the knowledge and the choice to participate in research studies—or not.
I think that we all want a future where there's less Parkinson's. But that advancement will require us to make some progress scientifically. And I think the best progress is going to be made when everyone is a part of it.