A conversation with Denise & R Bernard Coley
The day she got her Parkinson’s Disease (PD) diagnosis, Denise Coley searched for a pie chart. After spending years in the corporate world, she was used to using data to help process information and make decisions. Yet, her biggest insight came not from what she found, but from what was missing – diversity.
While often thought of as an older, white man’s disease, Parkinson’s does not discriminate by age, gender, race, or ethnicity. 1, 2 A study published by the Parkinson’s Foundation last year revealed significant gaps in PD care in the US with the greatest disparities found among women, people of color – which included those who identify as Asian, Black, Hispanic, and Native American -- and people living in rural areas. 3, 4
As Black Parkinson’s advocates, Denise and her husband Bernard don't fit the usual mold of a person with PD and care partner. Drawing from their professional backgrounds, they have refocused their skillset towards engaging and empowering Black families living with Parkinson’s through much-needed awareness, education, and resources.
Kyowa Kirin recently invited Denise and Bernard to speak with employees about their journey and how the healthcare community can bridge disparities in PD care. Following is an excerpt from our conversation:
When did you first begin to notice the symptoms that would ultimately be diagnosed as Parkinson’s disease?
R. Bernard: Thirteen years before the diagnosis, I was working in the high-tech industry and Denise had a corporate DE&I supply chain career which required global travel. I noticed changes early on and would join her on her travels to assist her; I could work remotely. We received various diagnoses along the way; one doctor thought she had high-altitude sickness. We started traveling a day early to allow for recovery. That was our life on the road.
At home, we were independent career-wise and in the community. But when Denise constantly felt fatigued and regularly dropped dishes in the kitchen, I knew something was wrong. Then came Thanksgiving dinner when she was noticeably shaking. Her first reaction was to deny it because this was normal for her, but not normal for me and our family. And that began our journey to the diagnosis.
Denise: The 13-year marker fits because from 2000 to 2005, I did intense exercise like marathons and a 3-day breast cancer walk. Intense exercise is known to slow Parkinson's progression. 5 It was not until I stopped intense exercise that the Parkinson’s symptoms became more pronounced.
R. Bernard: Unknowingly, she was doing the right thing with exercise. When she stopped, symptoms progressed.
What was that moment like to finally learn it was Parkinson’s disease?
R. Bernard: For thirty minutes after he said, "Parkinson's disease," all Denise heard was "wah, wah, wah." Fortunately, I was there, listening. That is why we advocate always having someone with you at your doctor’s visit for support. It was not so much a shock as it was a relief. Relief because we now had a name for what was going on with Denise. We were no longer guessing. The shock, though, had more to do with the delivery of the diagnosis. It was very curt: "You have Parkinson's disease. Take this pill. If you stop shaking, you have Parkinson's. Come back and see me maybe in six months." That was it.
Denise: I returned and asked the doctor about Rocksteady Boxing, which we now know is good for Parkinson's patients, and he said, "If you want to, go ahead. I am not going to tell you no.” 6 That was all. No details about the future. No more information about Parkinson's. Many Parkinson's patients face this—getting a diagnosis without enough support or information.
What sparked your transition to becoming Parkinson’s advocates?
Denise: I am not one to twiddle my thumbs. The first step was to reconcile with myself about Parkinson’s disease. I went to my aunt, who was almost one hundred years old, and asked if there was anyone in the family who had Parkinson’s. I found out that in my maternal line, I was the third person to receive a Parkinson’s diagnosis with one relative suffering from an essential tremor. I thought we need to be passionate about what we are doing, so other families don’t go through what we are going through. So, I decided to make a pledge to myself to do that.
The day that I received the diagnosis, I began the daily habit of researching for the latest Parkinson’s information. I looked to see if there were support groups for women or people of color and found 2 women support groups. I knew from our background and skills that there were things that we could do to make a difference. As Parkinson’s advocates we could raise awareness, bring resources to the community, talk to the medical professionals, talk to the schools and hospitals.
How has living with Parkinson’s impacted your family?
R. Bernard: Culturally, we don't talk about diseases, so you feel isolated. We felt alone with Parkinson’s, not unlike others. We know white men get it, but we asked, "What about us?" Denise got the diagnosis, but the family also got Parkinson's. It affects everyone, even pets. Non-motor symptoms like anxiety and depression are tough. You look fine outside but walk slow, and people ask what's wrong. Socially, her voice gets low, and people can't hear. We weren’t warned about this. It’s irritating, and we need better solutions.
Based on your experience, how can the healthcare community improve care and support for communities of color living with Parkinson's Disease?
Denise: Often, hospital or pharmacy staff think I am drunk when picking up my medications. They say, "Don’t drink with this," and I must repeatedly tell them, "I don’t drink." An EMS professional also suggested I document and keep my medication dosage and schedule handy when visiting the hospital or pharmacy. Since then, we've been advocating for people to always carry their medical ID and have their medical information on their phone. Additionally, they should be prepared and obtain the Parkinson’s Foundation Hospital Safety Guide, a tool and information to help a person with Parkinson's during their hospital visit.
This is just one example of how better communication and understanding can improve care. Additionally, healthcare providers and organizations should invest time in communities, meet them where they are, participate in local health fairs, and engage with trusted community members to build trust and ensure culturally sensitive care. By taking a few steps, we can make a real difference in providing support to under-engaged communities facing health disparities with Parkinson's Disease.
R. Bernard: Meeting people where they are is not just a slogan; it’s a prerequisite to success. There are two experts in an exam room – the doctor who is an expert in science and medical condition, and the patient who is the expert on the lived experience. Nobody knows their lived experience like they do.
Treat the person in front of you as you wish to be treated and reflect diversity in patient-facing materials and staffing. Get to know the person and demonstrate a commitment to listening, discovering their treatment goals, and being culturally sensitive. This is extremely important on the first visit.
It’s important to acknowledge the justified existence of trust issues and validate the community’s concern. Seek out trusted community members, explain your interest in connecting, and implement meaningful patient community engagement and inclusion best practices. Give the trust-building process adequate time to develop organically. Connect, listen, build trust, and communicate your commitment by sustaining your presence in their environment.
As we conclude, could you share any upcoming projects or initiatives that you're particularly enthusiastic about and anything we should keep an eye out for in the upcoming future?
R. Bernard: Our current focus includes three pivotal initiatives:
- The Black Parkinson’s Disease Summit, held in February 2024, was a groundbreaking event that brought together the Black Parkinson’s community in a safe and culturally sensitive setting. We're planning a second summit due to popular demand.
- The Black Parkinson’s Disease Family Quilt was launched to evolve the Parkinson’s narrative reflected in medical and educational resources. The digital Quilt features the faces of Black people with Parkinson’s, their families, and Black researchers and healthcare professionals focused on serving the greater PD Community.
- The book "PD Movers – We Keep Moving" continues to serve as a powerful tool for education and awareness. It includes a collection of stories from the Black Parkinson’s community and has been a successful model for engaging communities of color in a culturally sensitive and effective way.
- Our messages are clear: to the PD Health services, we emphasize that representation matters; to the underrepresented community, we affirm that they are not alone.
Denise: Building connections within the community is also important so that no one feels alone and that every voice is heard and represented. We launched two programs that address this:
- Shades of Strength ™, a social network for Black women with PD and care partners, launched in June 2023, offers a supportive space for connection and shared experiences.
- The Black Parkinson’s Disease Support Group Leaders Alliance, started in February 2024, provides a monthly forum for support group leaders to discuss goals, challenges, and best practices in a safe environment.
Denise and Bernard’s advocacy has helped to forge greater awareness, understanding, and support for Black families affected by Parkinson’s disease. Their work has been pivotal in fostering a sense of unity and strength.
To read more about their journey, recent projects and successes, see:
For These Spouses, The PD Health Disparities “Gap” Is Personal, PMD Alliance, February 2, 2022.
Meet Denise and Bernard Coley, Leaders in the Black Parkinson’s Community, American Parkinson’s Disease Association, April 20, 2024
REFERENCES
1 Pearson, C., Hartzman, A., Munevar, D. et al. Care access and utilization among medicare beneficiaries living with Parkinson’s disease. npj Parkinsons Dis. 9, 108 (2023). https://doi.org/10.1038/s41531-023-00523-y
2 New Medicare Study Finds Critical Gaps and Disparities in Access to Parkinson’s Care. (2023, July 10). Parkinson’s Foundation. Retrieved August 5, 2024, from https://www.parkinson.org/blog/awareness/care-access-disparities
3 Pearson, C., Hartzman, A., Munevar, D. et al. Care access and utilization among medicare beneficiaries living with Parkinson’s disease. npj Parkinsons Dis. 9, 108 (2023). https://doi.org/10.1038/s41531-023-00523-y
4 New Medicare Study Finds Critical Gaps and Disparities in Access to Parkinson’s Care. (2023, July 10). Parkinson’s Foundation. Retrieved August 5, 2024, from https://www.parkinson.org/blog/awareness/care-access-disparities
5 de Laat, B., Hoye, J., Stanley, G. et al. Intense exercise increases dopamine transporter and neuromelanin concentrations in the substantia nigra in Parkinson’s disease. npj Parkinsons Dis. 10, 34 (2024). https://doi.org/10.1038/s41531-024-00641-1
6 de Laat, B., Hoye, J., Stanley, G. et al. Intense exercise increases dopamine transporter and neuromelanin concentrations in the substantia nigra in Parkinson’s disease. npj Parkinsons Dis. 10, 34 (2024). https://doi.org/10.1038/s41531-024-00641-1
