Uniting and Supporting the Black Parkinson’s Disease Community

Meet Denise and Bernard Coley, Leaders in the Black Parkinson’s Community

You’ve seen us put a spotlight on APDA-funded researchers as well as interesting and inspiring people living with PD, and today we are excited to introduce you to Denise and Bernard Coley – two special people who are extraordinary advocates for the PD community and have been involved in numerous initiatives to improve Parkinson’s health outcomes in the Black  community.

APDA is interested in expanding the reach of PD support and education and broadening the diversity of PD research. Our strategic plan has us focused on reaching more under-engaged and under-represented communities and our specialized Diversity in Parkinson’s Research Grant is helping to study the health inequities and/or differences among under-studied PD communities. We have collaborated with the Coleys in several ways over the past two years and we’re excited for you to learn a bit more about them and their efforts.

Denise and Bernard Coley are both retired executives with decades of experience, Bernard as Principal and Denise as Founder of Enable Your Vision, a firm that has had a significant impact on global supplier diversity. Denise was diagnosed with PD six years ago.

You may recognize them from PD Movers: We Keep Moving. Their narrative is told in this beautiful storybook of the experiences of Black people with PD. You can obtain your own downloadable or free hard copy of PD Movers on the APDA website.

Denise and Bernard have been featured on two APDA virtual programs. They joined us for a Dr. Gilbert Hosts broadcast to discuss PD in the Black community and the PD Movers storybook. They also participated in a person with PD and care partner panel focused on reaching under-engaged communities in research endeavors during APDA’s Virtual Diversity in PD Research Roundtable (you can jump to 1:59:29 to go straight to the panel discussion or watch the full program to learn more about APDA’s diversity-focused research funding.)

We are so inspired by Denise and Bernard’s work and wanted to find out more about some of the new projects that they are working on.

Our conversation with Denise and Bernard

Shades of Strength™️ is a virtual community you created for Black women affected by Parkinson’s disease. Tell us how this started.

Denise: It started with the story of the PD Movers book. When we had our first PD Movers meeting, we were all in our little Zoom boxes, and all the boxes were filled with black and brown faces. And we were all in a state of awe. We needed to pause, absorb, and take a minute before proceeding forward. Up until that point, many of us thought we were the one and only Black person with PD! I kept thinking about that moment and how representation matters. I kept thinking – how can I reproduce that moment?

Over time, I slowly gathered a group of Black women who have Parkinson’s disease like me, and Black women who are care partners. I wanted to create something for them, and I started germinating ideas.

Bernard: If you listen to the patients’ voice, they’re asking for something different than you see in the traditional support group. One of the themes that emerged from the group was: We may have Parkinson’s, but Parkinson’s does not define us. We need a place for us to be people again as we were before and so in reaction to that Denise structured this group as a social group where Parkinson’s is the thing that they have in common, but it is not the focus, and the results have been spectacular.

Denise: In typical support groups, you might not put people with PD together with care partners, because each group is going to have a very different viewpoint, but then I thought, what if we made it a Social Hour instead of a traditional support group? I consulted three medical professionals and said to them – this is the gap I see. Let us bring together these women and we won’t necessarily talk about Parkinson’s. I am joined by Angela Huckabee and Charice Williams, the Shades of Strength Steering Committee.

We meet each month virtually. We start with an ice breaker and then have an activity. We laugh. We have joy. We do art projects. We do writing projects. We do all kinds of different things so that we step outside that Parkinson’s box, be ourselves and just have a good time. Planning the month’s activities rotates through the members so that all the members are part and parcel of this and have ownership of the group as well.  We also have added a half hour at the end to have some interactive time where people can just talk with each other. Connection is important because we’re building a community. You can join when you can and if you can’t make it sometimes that’s okay too. It is very welcoming.

We have a newsletter that keeps everybody up to date. The newsletter is also created by various members of the group.

If someone wants to join Shades of Strength, what should they do?

Denise: You need to be referred to the group either by a doctor, another member of the health care team, or a current group member. We need to know that you have Parkinson’s and that you are under the care of a doctor.  If you don’t have a referral and want to join, you should email me at decoley@me.com and I will be happy to talk with you.

You have another initiative in which you bring together the leaders of Black support groups?

Denise: As we discussed, Shades of Strength is not a support group, it is a social networking group. But some people may want a more traditional support group and specifically one that reflects themselves. I was frequently asked if there were any Black support groups. I started collecting a list of them and it was not until December 2023 that I finally found more than 10 Black support groups.

I thought “I’m going to contact every group and connect all of these support group leaders!” and one by one I did that. The groups are located in North Carolina, Florida, Georgia, Michigan, Chicago, New York, Pennsylvania, and California. By connecting these groups, we created the Black Parkinson’s Disease Support Group Leader Alliance.

We meet once a month with the leaders of these 10 support groups. We want the leaders to realize that they’re not alone. We talk about what their goals are, what they are trying to accomplish, where they need help, what best practices are, what resources they need, and what they would like to share. This is a group that can depend on each other. There is strength in numbers.

If there is another Black support group leader out there who isn’t yet connected with the Alliance yet, what should they do?

Denise: Email me at decoley@me.com

What advice do you have to help the broader PD community reach under-engaged communities?

Bernard: I am always asked this question. First of all, remember, not everyone is looking for the same thing so there can’t be one template for how programs are offered. The Black community may need different things and one size does not fit all. There is so much great information and education available for people with PD. Our job is to get the Black community in the door so they can be receptive to it.

Here are some of our guiding principles:

  • Remove the stigma. If you call your group a “support group”, many people in the Black community may not come. They will think of AA and drug addiction groups that use those words, too. “The last thing I need is to have PD and for someone to think I am on drugs!”, people will think. So, we changed the name. In addition, if you focus right away on Parkinson’s disease, that will not draw people. But information on “brain health” – and you will get a line out the door and around the block.
  • Focus on developing trust. The forming of any group begins and ends with trust. Don’t start the group talking to participants about lots of information and education. I always say, “Connection before content”. The group should be a chance for both the group participants and leaders to get to know each other to develop trust first. Have food at your meetings! It is culturally significant and is a great way to break down barriers.
  • Use culturally sensitive patient-facing materials that will resonate with the community. The goal is to get people in the door. Use specific vocabulary and images with the right context and history.
  • Go to the community instead of waiting for them to come to you. Community centers, rehab centers, and senior centers – members and visitors of these venues are willing to hear what you have to say. But begin by going to them.
  • Utilize storytelling to communicate information and education. The PD Movers book showed that storytelling is a traditional and effective model for disseminating information. There is a lot of educational information in that book and the relatable stories allow for that education to take hold.
  • Give practical take-home messages and tips that people can leave with and implement almost immediately.
  • Listen to the patient and community voice!

Finally, tell us about your recent Black PD Summit.

Bernard: First let me tell you about our Special Interest Group (SIG) – Black Diaspora which was created in 2020. This is an affiliation of people from the Black community who are people with PD, care partners of someone with Parkinson’s disease, movement disorder specialists, as well as neurologists, researchers, clinicians, patient coordinators, therapists, and social workers, focused on working and serving people with Parkinson’s. SIG-Black Diaspora is a grassroots working group that brings expertise and best practices focused on developing solutions to mitigate health disparities and focus on issues in the Black community. Our mission is to improve Parkinson’s health outcomes in the Black PD community, to increase their participation in clinical research, and to empower members of the Black PD community to live their best lives despite having PD.

SIG-Black Diaspora recently launched the inaugural Black PD Summit, a four-part virtual event which was food for the soul.  In attendance were Black people with PD and their care partners, as well as Black healthcare professionals who work with people with PD. The first session was an opportunity for community networking. The second session was a town hall meeting where we wanted to listen to the community. The third session highlighted Black Excellence in healthcare professionals who work with the PD community. For the fourth session, we invited outside organizations to present to our group as part of a Brain Health and PD Resources Expo.

The event was extremely successful in connecting the Black PD community and we look forward to moving forward with new SIG-Black Diaspora initiatives.

We are thankful to Bernard and Denise for their dedication to making life with PD better for the Black community as well as other people with PD, and for taking the time to share their efforts with us. We hope you enjoy learning about their important work.

Tips & Takeaways:

  • Denise and Bernard Coley are using their personal PD experience together with their business acumen to create a sense of community among Black people with PD and find ways to reach the community with important PD information.
  • APDA supports and distributes PD Movers: We Keep Moving, which you can download or request a free hard copy.
  • To learn more about SIG-Black Diaspora, contact Bernard at rbernardc@aol.com, and for Shades of Strength, contact Denise at decoley@me.com.
  • APDA’s applauds The Coley’s efforts as our strategic plan is focused on expanding our reach to under-served, under-studied and under-represented communities to promote health equality and access to care, and provide education and support.
  • Through our Diversity in Parkinson’s Research Grants, APDA funds and supports PD research that explores the health inequities and/or differences among under-studied PD communities.

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