Parkinson’s Disease Storybook
THE PD MOVERS - WE KEEP MOVING storybook is a compilation of narratives of African American and Black individuals and caregivers who are living and thriving with Parkinson’s disease. The goal of the storybook is to inspire and connect individuals in the community by sharing the experiences of these remarkable individuals. We also hope these stories will educate others by removing the mysteries and misconceptions of Parkinson’s disease and provide useful resources regarding diagnosis and treatment to allow others to thrive with Parkinson’s disease.
Download PDF format of the book
Who are the PD MOVERS?
In the Spring of 2021, the PD Movers group was born - Doctors and researchers at Columbia University Irving Medical Center (CUIMC) and Teachers College, Columbia University invited a group of Black and African American individuals with Parkinson’s Disease and their caregivers to come together to develop an educational guide for Parkinson’s disease (PD) designed specifically for the Black and African American community.
PD Movers Group
Individuals with Parkinson’s disease and their caregivers:
BERNARD COLEY is a care partner for his wife with Parkinson’s disease. Along with his wife, he advocates for participation in Parkinson’s related research, engages in outreach work in Black communities, and supports Parkinson’s related organizations. He desires to serve the PD community and inspire other care partners to find the silver linings while taking care of Parkinson’s patients.
While battling the disease herself, DENISE COLEY actively serves on the boards and committees of various Parkinson’s disease organizations, participates in support groups and studies, and mentors PD patients. She hopes to educate under-engaged communities and empower PD patients to live a better quality of life.
SANDRA COPLIN felt scared when she was diagnosed with Parkinson’s disease, but relieved that the diagnosis allowed her to move forward. Fearing the unknown, she is beyond grateful to have her faith, family, friends, and physicians by her side to support her as she walks on her path.
Due to a scary experience with medications, VICTORIA DILLARD tried to manage Parkinson’s disease on her own. After several years, she bravely mustered up the courage to ask for help. Today, she counts her blessings, including her family, friends, doctors, and the PD community, all who have supported her through the rough days.
LORRAINE HAYE is a caregiver for her mom with Parkinson’s disease. As she navigates her role, she learns the importance of being patient with her mom, forgiving herself when days don’t go as planned, and relying on her faith to help sustain her and practice gratitude.
ANGELA HUCKABEE is the wife of Richard Huckabee, who has Parkinson’s disease. She admires her husband’s determination to fight this disease and is hopeful for the future.
For RICHARD HUCKABEE, it was a long journey to his diagnosis of Parkinson’s disease. After nine years of experiencing symptoms, several misdiagnoses, and even losing his job, he finally received a proper diagnosis. He feels strongly that there is no excuse for his prolonged diagnosis just because he, a young Black male, does not fit the typical PD profile of an “old white male.”
DON RANSOM is a man of many talents. He was a musician in high school, served in the United States Air Force, was an employee of the United States Postal Service and is a dedicated athlete. He longs for the way his life used to be, but is grateful that he is able to share his journey and story with others, hoping to impact others and make it better for them.
KERMIT SMITH, a enthusiastic football coach and avid traveler, had his life upturned when he was diagnosed with Parkinson’s disease. Through his faith and the help of a neurologist and psychologist, he finds the strength to continue doing what he loves.
Doctors and researchers at CUIMC and Teachers College, Columbia University
Elizabeth Delaney, LCSW joined the Columbia University Irving Medical Center (CUIMC) Movement Disorders team as a Licensed Clinical Social Worker and Center of Excellence Coordinator in June 2017. She is also the social work manager for the department of neurology. Her interests include mental health of the chronically ill and disabled, and health care disparities.
Danielle Kipnis, MA is a yoga instructor and dancer specializing in yoga, breathing, and movement for neurodegenerative disorders as well as emotional and physical traumas and pain. She received her Masters in Applied Physiology at Teachers College, Columbia University, and is continuing in the program, pursuing her PhD in Kinesiology. She is grateful to be a part of this project and help share the PD Movers’ stories to make Parkinson’s disease care more accessible.
Michele Lin is currently a student at Barnard College of Columbia University and a research assistant at the Neurorehabilitation Research Laboratory (NRL). She is honored to be part of a meaningful project that she hopes will touch lives in the Black and Brown community. Her future plans include pursuing a career in healthcare administration or management in order to improve patient experience and satisfaction, as well as communication and transparency within healthcare.
Chelsea Macpherson is a Doctor of Physical Therapy specializing in adult neurorehabilitation. She is a PhD candidate at Teachers College, Columbia University where she studies exercise induced neuroplasticity and physical activity behavior change across neurodegenerative diseases. She currently holds a position on the Academy of Neurologic Physical Therapy’s Parkinson Disease Knowledge Translation Taskforce which is aimed at synthesizing and translating scientific evidence to disperse applications, products and tools for clinicians, and people with Parkinson’s to use readily.
Alissa Pacheco, OTR/L is a Licensed and Board Certified Occupational Therapist who is currently in pursuit of her EdD in Movement Science and Education at Teachers College, Columbia University with a focus on Motor Learning & Control. She has over ten years of clinical experience in neurorehabilitation. Currently, she is the Manager of the Neurorehabilitation Research Lab at Teachers College and an interventionist for research studies involving the self-management of physical activity routines in early-stage Parkinson’s Disease.
Anita Parker is a licensed social worker and serves as the Community Outreach Director of St. Luke A.M.E. Church. She is a community partner to the research team and a staunch advocate for bringing resources to NYC Black and Hispanic communities.
Lori Quinn, PT, EdD is Professor in the Department of Biobehavioral Sciences at Teachers College, Columbia University, and holds joint appointments as Adjunct Associate Professor in Rehabilitation and Regenerative Medicine (Physical Therapy) at Columbia University Medical Center. Dr. Quinn is a research physical therapist and is the director of the Neurorehabilitation Research Lab at Teachers College. She is the principal investigator of several ongoing clinical trials of exercise and physical activity interventions in people with Parkinson's disease.
Hiral Shah, MD is a movement disorders specialist who is committed to reducing health disparities for the Black and Brown Community with Parkinson’s disease and is inspired by the stories of her patients. She believes that storytelling is a powerful method to teach and inspire others to live and thrive with Parkinson’s disease.
PD Movers Webinar
In 2021, PD Movers invited a group of Black and African Amercian individuals with Parkinson’s and their care partners to develop an educational guide for Parkinson’s designed specifically for the Black and African American community. This group of “movers” includes doctors, researchers, and teachers from Columbia University Irving Medical Center (CUIMC) and Teachers College, Columbia University. What came from those initial gatherings is a beautiful storybook filled with narratives of African American and Black individuals and care partners who are living and thriving with Parkinson’s.
During this series of webinars, you will get to meet the “movers” of this storybook and advocacy coalition and learn how they have been removing the mysteries and misconceptions of Parkinson’s in their communities through storytelling and more.
- Session #1 – PD Movers: A Tool for Building Trust, Awareness, and Empowerment in the Black and African American Community [watch video]
- Session #2 – The Power of Story: On Using Narratives in the Black and African American Community to Connect and Inspire Those Affected by Parkinson’s [watch video]
- Session #3 – The Role of Faith-Based Leaders in Health Promotion and Outreach in the Black and African American Community.