Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation. We want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.
Parkinson's disease has historically been portrayed in books and images as a disease affecting elderly white men, but that image is wrong. The disease can affect people of any race or ethnicity, women as well as men, and even younger people. The perceptions of the disease based on old photos and drawings of people with PD have led to its under-recognition and therefore under-treatment, especially among the Black community. Compounding the problem has been access to care, as well as some distrust of the medical community based upon historical wrongs done to them.
I spoke with Denise Coley, who, since her diagnosis, has been very active with the Parkinson's Foundation at the national level, and she now chairs the Mission and Outreach Committee of the California Parkinson's Foundation Advisory Council. She discussed the need for better awareness of Parkinson's disease in the Black community, and some ways that that can be achieved. Being a highly proactive person, Denise describes how she set out on her Parkinson's journey.
Denise Coley 1:58 After my Parkinson's diagnosis, I immediately began the daily Parkinson's disease research. In my research, I found out about the Parkinson's Foundation programs that were available, and I was invited to attend PAIR, which is a research program that trains people with Parkinson's disease and their care partners to become involved in the research process and to become a research advocate.
From there, my husband and I had a heart-to-heart discussion, and we jointly decided to become Parkinson's advocates for awareness, resources, and research. Then I joined the Parkinson's Foundation People with Parkinson's Advisory Council, and after that, and also coinciding, I joined the California Parkinson's Foundation Advisory Council, and I am the chair of the Mission and Outreach Committee. I also am on a WPC (World Parkinson's Coalition) Clinical Research Working Group, and I'm also a member of the Wellness Committee at PD Adventures.
Dan Keller 2:56 It sounds like you're deeply into this, so what would you say your experience as a Black woman with PD is, possibly compared to Black men, white men, white women? Do you get a sense that there's a different approach to you or by you?
Denise Coley 3:15 Yes. More often I get the comment that, "You don't look like a typical Parkinson's patient." There are no support group meetings for Black women that I'm aware of. Black women and men are slower to get diagnosed. It's difficult to access care sometimes; it could be six months to get into a movement disorder specialist or neurologist.
I have learned to be my own advocate and be empowered for my Parkinson's disease journey, and take my care partner with me to all meetings. In some cases, it is hard to be heard if they are surprised that it is a Black woman sitting across from the doctor and that the diagnosis is Parkinson's. We especially need to be heard regarding medications, risks, and drug treatment, and whether or not they've been tested on Black women and men.
Dan Keller 4:02 Do you think there are misperceptions or fears or lack of knowledge about PD in the Black community, not only among physicians treating them, but within the community itself?
Denise Coley 4:13 Yes, there are fears, because there have been previous studies on Henrietta Lacks and the Tuskegee Project. People are concerned that they will be used as guinea pigs. There's a lack of knowledge about Parkinson's disease. Some people will think shakes are nothing to worry about, it is a sign of just getting old. Others think it doesn't affect Black men. They have never seen anything other than the old men pictured with Parkinson's. They may be unaware that it affects all ages, all genders, and all ethnicities.
Dan Keller 4:45 How and where can health literacy be improved and communicated?
Denise Coley 4:52 Health literacy should be communicated when you go to the doctor, so they can give you the information. But more often than not, if there are community services within different communities, they can also be helpful in health literacy.
Dan Keller 5:08 Right, churches, hair salons, senior centers, things like that.
Denise Coley 5:15 It could be in any of those situations. But also remember, as you go into the community, you have to find a trusted person in the community to help open doors and make sure that you're getting to the right connections that will widely spread and distribute the information.
Dan Keller 5:31 PD GENEration is a genetics study in the community for people with Parkinson's, and it's really expanding to thousands of people. What's been your experience with PD GENEration, and why do you think genetic testing is important in the Black community?
Denise Coley 5:49 Well, I was one of the first few people to be tested on the in-home PD GENEration, and to me, genetic testing is important for all people to be tested, so that it is all-inclusive. The more information that is gathered in the database will help treatments, therapies, and the possibility of finding new genes. So I'm encouraging everyone who has Parkinson's to try to be tested. Most family members will ask the person with Parkinson's—which happened to me—to get tested. Some of my younger relatives, they wanted to know if there was a risk to them or their family members to have it, or do they have Parkinson's, and wanted to know what the symptoms were, and there were other considerations.
If you think about it, Parkinson's disease GENEration meets an unmet need. They're giving the genetic tests, and they are affordable. Parkinson's disease is not affordable, and it's not covered by some health insurances, so that's a problem for people in the community. And then there are many genetic tests that do not offer genetic counseling, which can help interpret test results, which people want to have more information about, and people with Parkinson's do not know if they carry genetic changes that are important to Parkinson's-related genes. For instance, I have two other people in my family that have Parkinson's disease in the maternal line over the last two generations.
PD GENEration is the first-of-its-kind national initiative that offers genetic testing for clinically relevant Parkinson's-related genes, and the genetic counseling is so important so that people can understand what they've gotten and what the risks are. And it's at no cost to the people who've done it. Participation in PD GENEration can and has been done at home—mainly a cheek swab, just like all the other genetic tests that you have, and then you send it in, so it's very easy. It's not invasive, and you get the genetic counseling.
Dan Keller 7:48 Great. Let's move on. You've been involved with a book called PD Movers: We Keep Moving. In general terms, who are the PD Movers referred to in the title?
Denise Coley 8:02 The PD Movers is a group of Black individuals and African Americans. They are people with Parkinson's and care partners who are affected by Parkinson's disease and have come together to establish a network of trust and support, as well as create culturally sensitive educational resources to allow individuals and families to live well and thrive with Parkinson's disease.
Dan Keller 8:25 What does the book consist of, and what are its goals?
Denise Coley 8:30 So, the book is a compilation of narratives of African American and Black individuals and caregivers who are living and thriving with Parkinson's disease. The goal is to inspire and connect individuals in the community by sharing the experiences and stories of African Americans and Black individuals with Parkinson's disease. We hope the 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.
Dan Keller 9:03 Does the book help break stereotypes, considering it involves people in the Black community and not a bunch of only old white guys, or at all? And does it raise awareness of PD in communities of color?
Denise Coley 9:18 The book itself is a collaboration of knowledge and perspective of people with Parkinson's disease, care partners, and health professionals. When you look at the book raising awareness of African and Black communities, people can see Black and brown people and read their stories—people who look like them.
We have received a lot of feedback regarding the raising of awareness and positive outcomes. Some of the comments we've gotten is people from different cultures have asked for access to the book to share with families and friends. People use the book to open discussions about Parkinson's disease with family, friends, and children. Children have enjoyed the book and specifically enjoy the stories through the illustrations alongside the book.
Medical professionals have been happy to see this book, and they share it with their patients and communities. Many organizations have placed the book on their websites and are incorporating it into their webinars. People stated the inclusion of symptoms and medical information is a great compilation, and lastly, this is what was missing and what was needed to inform their communities that Parkinson's affects all people, all genders, all ages, and ethnicities. People have read all 63 pages in one sitting. That's pretty phenomenal.
Dan Keller 10:32 Besides narratives, does the book present any practical tools or resources?
Denise Coley 10:38 Yes, the book itself is an educational tool that includes people's lived experiences and stories, Parkinson's disease symptoms to look out for to understand Parkinson's disease as a health problem, and breaks down the myths of Parkinson's disease. The last two are Parkinson's disease treatment education, especially the importance of exercise and the existence of deep brain stimulation to alleviate debilitating tremors, and lastly, it has exercise sources, simple but valuable patient activities, and diversity options for people with Parkinson's.
Dan Keller 11:16 How can people get access to the PD Movers book?
Denise Coley 11:20 People can access the site by going to the Columbia University website and looking up PD Movers. You can also go to the links on the PD Movers pages of Facebook, LinkedIn, and Instagram.
Dan Keller 11:35 In a nutshell, what's the message you want to tell people in your wider community?
Denise Coley 11:41 To me, it is important for people to have access to Parkinson's disease information and resources to help them on their Parkinson's disease journey. This is a book that brings information in an illustrative form that breaks down barriers and provides a tool to reach more people to help them find hope and guide them on their Parkinson's journey. So I would suggest everyone listening to the podcast that they go to the Columbia website for Parkinson's disease and download the book on PD Movers.
Dan Keller 12:10 Great, thank you.
As Denise suggested, good ways to become more informed about Parkinson's are to rely on your movement disorder center and your neurologist, social worker, and palliative care team. In the larger community, good sources are church community health centers and trusted individuals with health knowledge. A social worker in your movement disorder center, or a local librarian, should be able to point you to other community resources. And, of course, there's always the Parkinson's Foundation helpline to answer your PD questions.
For a discussion of health disparities and outreach efforts to communities of color, search our website at parkinson.org for "the Black community." You'll find a blog post called Tackling Disparities in PD Care, a Movement Disorder Specialist's Story by Linda Nyaboke. We also have a podcast with her called Meet the Researcher: Disparities in PD Care. Several past podcasts discuss outreach to underserved communities and addressing gender differences in needs. Just browse our list of podcasts at parkinson.org/podcasts. As always, our helpline staff can help you find information and resources.
If you'd like to be a leader in PD research for the Black and African American community, attend the Parkinson's Foundation 2023 Learning Institute and learn more about research, Parkinson's community priorities, and the importance of being a research advocate through in-person training. If you're interested in applying, please email patientengagement@parkinson.org.
Finally, PD GENEration provides free genetic testing and counseling to empower people with Parkinson's disease to improve their Parkinson's care and help scientists better understand the role of genetics in Parkinson's disease. Join PD GENEration today. You can find information about the study at parkinson.org/pdgeneration.
News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts.
At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till next time, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO. That's 1-800-473-4636. Thank you for listening.
