An individual’s journey with Parkinson’s disease (PD) is shaped by so many factors: their age, their gender, where they live, the type and severity of symptoms they experience, their community support system and more. One important, though often under-addressed, factor is the way race and culture affect life with Parkinson’s, particularly when it comes to bias and stigma.
In this podcast, four people from different backgrounds have a candid conversation on race, stigma and Parkinson’s. They share their experiences trying to find culturally competent medical professionals, overcoming the barriers to research participation, and communicating with their communities about their diagnosis. And they offer tips and advice on finding empowerment through education and advocacy.
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In this episode, Denise Coley, who was diagnosed with PD in 2018 and is a Parkinson's policy, health equity and awareness advocate, a co-founder of the organization Special Interest Group Black Diaspora and a member of The Michael J. Fox Foundation Patient Council, leads a discussion with:
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Wanda Kim Lilley, JD, who was diagnosed in 2012 at the age of 52. She is a Parkinson's advocate, a cyclist, a skilled fundraiser, and a member of The Michael J. Fox Foundation's Patient Council. Wanda is a Korean American and has lived with her husband in the UK and France since before she received her diagnosis.
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Israel Robledo, who was diagnosed in 2007 at age 42. He is a special education teacher, a writer and Parkinson's advocate. He has represented people living with Parkinson's from the Hispanic community with government officials and on research advisory boards. He also is a member of The Michael J. Fox Foundation Patient Council.
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Hiral Shah, MD, a movement disorder specialist and assistant professor of neurology at Columbia University Irving Medical Center. Her work is helping to eliminate health disparities and offer support and resources to people affected by Parkinson’s in underrepresented communities.
View a transcript of the podcast.
For more information on efforts to address racial bias in Parkinson’s research and care, check out this blog.
Denise Coley and Hiral Shah, MD were both involved in the creation of the illustrated storybook The PD Movers: We Keep Moving, a compilation of narratives of African American and Black individuals and caregivers who are living and thriving with Parkinson’s disease.
The Foundation’s landmark study, the Parkinson’s Progression Marker’s Initiative, also known as PPMI, is recruiting volunteers. People from all backgrounds with and without Parkinson's can help move research forward. Join the study that’s changing everything at michaeljfox.org/podcast-ppmi.