For These Spouses, The PD Health Disparities “Gap” Is Personal - PMD Alliance

A Long Line of Community Helpers 

For spouses Denise and Bernard Coley, community service is in their bones. “It goes all the way back to my grandmother,” Bernard told me. “She was a midwife in the deep South at a time when mobility for Black people was very, very restricted.” Because his grandmother delivered babies throughout the community—Bernard’s family estimates she delivered over 3,000 babies—she had an unusual level of freedom. Her mobility meant she became the town social worker, helping people throughout her travels, and the town crier, carrying the news from place to place. She called upon her children to help out and support their community, too, which instilled in them the importance of service. “This got passed down to my dad,” Bernard said, “and then to my family.” Today, Bernard has served on nonprofit boards for 51 years and is a 36-year member of Kiwanis International, which supports children across the globe. 

Denise has also spent her life deeply invested in her community. She started off her professional life as a speech pathologist and teacher, and carried the spirit of education into her corporate life, empowering diverse businesses across the globe. In the U.S., diverse businesses are at least 51% owned and operated by an individual or group that is part of a traditionally underrepresented or underserved group, such as women, minorities, veterans, the LGBTQ+ community, and people with disabilities. Denise believes these businesses don’t need a handout, but they do need the opportunity to grow. She, too, has been committed to nonprofit work, especially when it comes to building relationships in diverse communities. 

Wife and husband Denise and Bernard Coley at a restaurant

Denise and Bernard Coley

Their promise to give back meant that when Denise was diagnosed with Parkinson disease, they weren’t only going to tend to their own needs, they were going to look at Parkinson’s through the lens of community care: does everyone in the Parkinson’s community, no matter their background, have access to the care and supports they need? And is this care delivered in a culturally sensitive way? The choice to engage in collective care was an easy one for Denise: “It was a natural transition of what my life has been, just in a different aspect and, now, more personal.”  

Today, the Coleys are translating their significant experience and skills building businesses and engaging with diverse communities to reduce what Bernard calls “the gap” – health disparities that most profoundly impact minority communities.

Alone in a Crowd: The Ever-Present “Gap” 

Denise and Bernard know what it’s like to face subtle but chronic discrimination, including the kind that pervades healthcare systems. Denise is part of two women’s Parkinson’s support groups but, to this day, she knows personally “only two or three Black women and approximately 13 Black men with Parkinson’s.”  

The couple has also experienced the loneliness of being at a Parkinson disease conference surrounded by 2,000 people and turning to each other in surprise, saying, “Oh, look! There’s another Black person here.” During breaks in the conference lectures, they make an effort to find those people and start conversation. When people from diverse communities meet in a PD conference or similar setting, they explained, “instead of the usual socialization you’d expect, there’s tears and ‘Oh, my God, I’m not alone.’” 

To be clear, this is not because PD is a disease of only white, older men. Instead, this sense of feeling alone in the community is in part because, as Bernard told me, “research has excluded a lot of people, leading institutions to misunderstand how prevalent Parkinson’s is” and even to misdiagnose a person of color. Bernard added, “Most doctors aren’t prepared for young onset or people of color coming in with Parkinson’s because, if you look at the pictures, it’s older white males. Sometimes, doctors are dismissing or late in diagnosing people from minority communities because they don’t fit the profile.” 

I wanted to know if this difficulty finding people who looked like them in the Parkinson’s community included not only people with the disease and their care partners, but medical professionals, too. “Was it easy to find a movement disorder specialist who comes from a diverse community or to find support groups with people who look like you, who represent all people in the Parkinson’s community?” I asked Denise.  

In response, she and Bernard laughed. “That’s a joke, right?” Bernard said, still laughing.  

But without missing a beat, he added, “I want you to know, even though we make a joke about it, we joke because it’s painful. It is absolutely painful and for most people we represent and have talked to, both Parkinson’s patients and caregivers, it’s a very painful topic. So the short and the long answer is, No.” It wasn’t easy.  

Spouses Denise and Bernard Coley holding hands outdoors

Making a Difference, One Connection at a Time 

How are Denise and Bernard working to close the health disparity gap?  

One way they’re making Parkinson’s care and support more equitable is by talking to Parkinson’s organizations. “There are all these wonderful organizations, but if they’re not present on the ground in diverse communities, their resources aren’t helpful there.” In other words, diverse communities can’t access resources that aren’t available or known to them and aren’t in tune with their unique needs.  

“We see great programs from some of these organizations,” Bernard explained, “but when you look at the minority participation, it’s often miniscule. Part of our mission is to provide organizations with reasons why.”  

“To reach the Black community or the Hispanic community or the Native American community,” Bernard said, “the number one thing organizations need is a trusted partner. If an organization hasn’t established itself in the community for years, the community is not going to trust them.” Bernard suggests organizations engage with trusted partners, like counselors, faith leaders, elders, senior family members in the Asian and Pacific Islanders (AAPI) community, who can lead organizations into the community.  

In fact, Denise insists that the key to bridge-building between an organization and a community is showing up and listening. “Before you speak up,” she said, “take some time to listen and learn. That’s the most important thing I can stress because it’s been true for me throughout my career.” Listening is the gamechanger. “It really makes a difference,” she explained. “You have to be there to show up. If you’re not where they are, no matter what the population, culture, or the people are, there’s no trust. Then you’re just another salesperson trying to sell something to them and that’s not going to be appropriate, either.”  

Another leg of the Coley’s efforts is becoming trusted community partners themselves. They’re certified research advocates who are doing the hard but meaningful work of cultivating trust and connections both in diverse communities and with organizations, acting as a bridge that will allow minority communities to be more fully represented in research and Parkinson’s institutions. 

An Added Burden: Cultural Insensitivity 

Towards the end of our conversation, Bernard started sharing specific examples with me of what added burdens communities of color carry in addition to a PD diagnosis. Beyond trying to find a specialist who looks like them, what’s most important is to find a doctor who has the cultural sensitivity to care for all communities, including the unique needs of minority communities.  

“A doctor might say to a patient, ‘You need to exercise more,’” Bernard said. “What does that look like? For many people in communities of color, they may need a free program to meet a budget that’s already stretched too tight. The doctor might say, ‘Here’s a free program.’ The problem is, the program is across town, 50 miles away, an hour and a half drive, and the doctor’s prescribing the program for four times a week.” That’s not practical, he explains, and is an example of a lack of cultural awareness.  

As Bernard began to list more added burdens for people of color, I asked him and Denise if this is infuriating.  

“You’re asking me what it’s like to be Black,” Bernard said. “We don’t get the luxury of getting a break.” For them, this is not just a passion project or something they can take a vacation from: it’s a pervasive part of their experience. “So when you say, how can we keep going? What gives us hope?” Bernard said, “There are no alternatives. We don’t have the luxury. We have to keep going.”  

A Partnership Built on Compassion 

Denise and Bernard have chosen to lean in even when it’s hard. They’ve chosen not to be consumed by an added burden but, instead, to use it as fuel for collective care. “We’ve assembled groups that look like us to address health disparities a piece at a time,” Bernard told me. “We’re not going to solve this whole problem at once.” But by leaning in, Bernard and Denise are the hope. Rather than waiting on others, they have become the leaders and advocates they were waiting on, a choice that has been instilled in them since their beginnings.  

Denise tells me that she’s grateful that their advocacy has provided opportunities for them to work together. “I love that Bernard has always been giving of his time and knowledge,” she said. “When we got married, we said we’re married for life, in sickness and in health. We didn’t think about Parkinson’s when we got married 45 years ago. But Bernard has taken that vow seriously.”  

Spouses Denise and Bernard Coley at restaurant

Bernard loves Denise’s ability to “dive in” and educate herself. “She spends time every single day educating herself on Parkinson’s,” he told me, and he laughed when he explained that this saves work for him, as she’ll share the gist of what she learned with him. “She complements me,” he said. “We know each other’s strengths. It’s a good partnership.” 

A good partnership, indeed. One that’s sharing the love and compassion they cultivate together with the world.  

To learn more about racial disparities in Parkinson disease care, please read our interview with Disep Ojukwu, MD, MBA, MPH.

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