In April 2021, Bernard, my husband, and I were invited to attend a meeting with doctors and researchers from Columbia University, Irving Medical Center, and Teachers College; Black and African American people with Parkinson’s; care givers; and the Community Outreach Director of St. Luke A.M.E. Church to work on an educational guide for Parkinson Disease that was designed specifically for the Black and African American community. It was during this meeting that PD MOVERS was born.
There was one striking emotional moment that I will never forget. It was seeing the many Black and African American faces on Zoom, representing the many faces of people in the Parkinson’s community (people with Parkinson’s, care partners, researchers, doctors, illustrator, designer, and social worker). We all were in awe and shocked. It was the first time that any of us had seen that many Black and African Americans with connections to Parkinson disease in a meeting. I had to pause, reflect, and be grateful for this moment. I will never forget it. Just knowing that we all were not alone.
During the winter of 2020, Bernard and I created Special Interest Group-Back Diaspora (SIG-Black Diaspora). The SIG-Back Diaspora mission is to expand inclusion of Black and African American communities in Parkinson’s awareness, resources, education, services, best practices, and disease research. We address medical disparities amongst members of Black communities (including but not limited to Black PD patients, Black care givers, Black medical professionals, Black social workers, trusted advisors, and potential Black funders). We have built train the trainer models which address culturally sensitive ways to work with under-engaged communities. SIG-Black Diaspora looks at health gaps and determines innovative solutions.
Which brings me to the emotional moment when we saw so many Black and Brown faces affected by Parkinson disease. We each were shocked to see so many, because we seldom see more than a couple at a time, if ever. We each thought we were the only ones. As we continue to look at the needs of the African American PD community, there is a need to connect and get information.
In March 2023, I had an idea to recreate that moment of seeing those Black and Brown faces. I decided there was a need for the Black, African American Women who were care partners and people with Parkinson’s to connect and form a community that would meet monthly as a social networking group.
I contacted medical professionals and program managers to discuss the proposed solution. They all agreed it was a gap in the way the PD community addresses women of color, and they were pleased that I offered a possible solution.
Next, I contacted three friends individually and discussed the proposed solution, using each as a sounding board. I took the comments and updated the proposed solution.
The social networking group is called “Shades of Strength, Empowering Women’s Group.” The group has open enrollment for Black/African American Women with PD and Women Care Partners. This social hour is for us to meet and connect with one another on this journey in a safe place.
Our mission is to unite a community of Black/African American Women with PD and Women Care Partners.
Our goal is a networking community that creates connections and support for women with similar stories, sharing activities that bring joy, participating in engaging conversations, and trying new things together.
I asked my three friends to be on the steering committee (pictured below with myself), and we prepared for our first meeting.
We had a kick-off of the social networking group and here are two of our recent monthly activities: meditation and sand art.
Enrollment will be open to new members that are referred by a medical professional and/or current member, that meet our criteria for registering: Black/African American women with PD and women care partners.
View the flyer here for more information.