[Webinar Recording] RAISING AWARENESS AND HOPE IN THE BLACK AND AFRICAN AMERICAN PARKINSON’S COMMUNITY

PD Movers - Randell Pearson Illustrator

In 2021, PD Movers invited a group of Black and African American individuals with Parkinson’s and their care partners to develop an educational guide for Parkinson’s designed specifically for the Black and African American community. This group of “movers” includes doctors, researchers, and teachers from Columbia University Irving Medical Center (CUIMC) and Teachers College, Columbia University. What came from those initial gatherings is a beautiful storybook called PD Movers. It’s filled with narratives of African American and Black individuals and care partners who are living and thriving with Parkinson’s.

As a way of sharing this work, we hosted three panel-styled webinars and an interview with the illustrator to give you a chance to meet the “movers” of this storybook and advocacy coalition. 

We hope after watching this series, you’ll be inspired to initiate the kind of work that would be useful and meaningful to those in your community.

To learn about all of the panelists who were part of the series, visit here.

PD Movers: A Tool for Building Trust, Awareness, and Empowerment in the Black and African American Community

You can download a pdf of the transcript here.

PD Movers: A Tool for Building Trust, Awareness, and Empowerment in the Black and African American Community 

Note: This is not a flawless, word-for-word, grammatically-correct transcript, but it’s close. 

Jackie Hanson (Program Manager – Audio and Video Producer): 

In 2021, PD Movers invited a group of black and African American individuals with Parkinson’s and their care partners to develop an educational guide for Parkinson’s, designed specifically for the black and African American community. This group of Movers includes doctors, researchers, and teachers from Columbia University, Irving Medical Center, and Teachers College Columbia University. What came from those initial gatherings is a beautiful storybook filled with narratives of African American and black individuals and care partners who are living and thriving with Parkinson’s. The following webinar is the first in a series of three where you will get to meet the Movers of this storybook and advocacy coalition and learn how they have been removing the mysteries and misconceptions of Parkinson’s in their communities through storytelling and more. 

Claudia Martinez (MD, Hispanic Community Engagement Manager): 

Hello everybody. It is my pleasure to be part of this first webinar of the series and learn a lot more about PD Movers with a wonderful group of panelists. And I’m going to get started by asking them to introduce themselves. So, let’s get started with Dr. Shah. 

Harold S. Shah (MDS, Columbia University): 

Hi. Good afternoon everyone. My name is Harold S. Shah. I’m a neurologist and movement disorder specialist based here in New York, and I work out of Columbia University. 

Claudia Martinez: 

Thank you, Dr. Shah. And welcome, Denise. 

Denise Coley (Founder, Enable Your Vision) 

Hello, everyone. My name is Denise Coley, and I’m a patient with a person with Parkinson’s. I was diagnosed in 2018 and I’m one of the PD Movers. 

Claudia Martinez: 

Thank you, Denise. And now let’s welcome Wendy. 

Wendy Lewis (Chief Executive Officer, The Parkinson Council): 

Hi, everyone. I’m Wendy Lewis. I’m the CEO of the Parkinson Council in Philadelphia. I’ve been in this role for almost 13 years. 

Claudia Martinez: 

Thank you, Wendy. And last but not least, our gentleman in the panel. Go ahead, Bernard. 

Bernard Coley (Founder & Principal, RBC & Associates, Morgan Hill, CA): 

Hi, I’m Bernard Coley. I am a care partner first, and after that, I am also an activist who is working on engaging indigenous and minority communities worldwide. 

Claudia Martinez: 

Thank you, Bernard. And well, as you saw, most of the people who are here with us today are curious about learning more about PD Movers. And I’m going to ask Dr. Shah to get us started by learning more about what Peter Movers is and how the idea of Peter Movers was born. 

Harold S. Shah: 

Thank you so much, Claudia. I’m so excited to share this work with you all. So, it’s certainly been a long journey, you know, to tell you a little bit of background of what led to this project, I’m the product of Indian immigrants. And growing up I witnessed healthcare disparities in India as like many of my Indian diaspora. We would travel every year to India. My father was a physician. So, from a very young age, I had a lot of great curiosity and appreciation of issues of health equity. As I completed my training, it became very obvious to me that in Washington Heights and Inwood, despite being nestled in a very diverse community full of ethnic minorities, our clinics did not represent that. So, I was really eager to try to understand why that was the case and what we could do about it. 

And through a series of leadership and training opportunities, including one that was organized by Dr. Martinez when she was at the Muhammad Ali Center, she led the Hispanic Outreach Leadership Conference. And there I learned about her many amazing approaches to engage with the Hispanic community. And one of the approaches that she shared with us was the Promotor project, which included the development of a flip book with a fictional family and utilizing that as an educational tool to engage and empower individuals and families with Parkinson’s disease. So, I came back to New York with those ideas percolating in my mind and met Ms. Anita Parker, who is the outreach director at St. Luke, a church in Harlem. And together approached her with this pr challenge of how we improve engagement of minorities in Parkinson’s disease care. And we first had to take a step back and recognize that we wanted to start with brain health, that in that community, it was important to begin education and empowerment. 

Not with Parkinson’s disease, but with just brain health generally. So, we started to have a series of brain health lectures that were very interact. This spawned other relationships in the community at tenants associations, housing projects as well as senior centers. And over time, we built our relationship-built trust and began to have yearly health fairs to further engage the community, and later did focus groups. And Ms. Parker taught me that what we needed was to conduct a training for care partners about Parkinson’s disease. And what really was missing was the individual’s journey with Parkinson’s from the perspective of African American, black, and brown individuals. So, we brought together a group of individuals, which we later named the PD Movers. So, they’re individuals and care partners who are African American, black, and brown, affected by Parkinson’s disease. And our mission is to develop culturally sensitive educational information and establish a network of trust and support. 

And so that’s kind of how the PD Movers were started, and it led to the development of the storybook. That’s really been just such a beautiful project to see come together. It’s a compilation of first-person narratives that include really vibrant images that underscore the importance of representation combined with these authentic voices so that you can learn directly from the individual rather than a physician or other healthcare professional trying to educate the community about Parkinson’s disease. So hopefully that will get our conversation started, and I’m eager to have the others jump into 

Claudia Martinez: 

Yes, this wonderful start. Thank you, Dr. Shah, for giving us all that information. And first thing that comes to mind is something that I many of us have heard when outreaching to underrepresented communities, and it’s the fact that many times we’re told, oh, it needs to be somebody from the community doing the outrage or being front because that’s a person who’s going be easier, doing easier to trust of everybody. But Dr. Shah is not that case, right? You are not part of this community. And I’m curious to know or hear from people from the community who are in the panel, what things, or what steps or what is that Dr. Shah did that helped her win that trust in your eyes and in the eyes of the black and African American community. So, who would like to, 

Bernard Coley: 

So, I’ll handle that one because I, this is one of, of the ones that I really like to talk about. So, the way to say it is, what, what do I think were the important things that Dr. Shah did leading up to this project and the, and the wonderful outcome we are achieving? So let me start by saying this I have a slight disagreement. Dr. Shah is part of the community. In fact, the steering community that we lead on engaging the black community. One of the things we talk about is the black diaspora. And we like to define it this way, included in the black diasporas, all those who are treated like they’re black in the United States. And clearly, Dr. Shah falls in that category because what we’re really talking about is the conditions under which we work, live, and play. 

And Dr. Shah falls in now, but there’s an important piece, and that’s where I’ll start. So, the first thing I’ll say was important about the way Dr. Shah proceeded is she was willing to check her ego at the door of the community. And let me explain why that’s really critical. Dr. Shah sort of hinted at it, but Dr. Shah has an impressive resume out graduate or prestigious institution. She has all the credentials you need to talk about brain health and Parkinson’s disease, but that was not going to solve the problem. There are plenty like that. Okay? And to her credit, she recognized that at the door and said, maybe I have something to learn, to be culturally sensitive, to become a resource, not to be the spokesperson or to tell you how to do it, but to become the resource I need to sit down and learn. 

So, point number one was she checked her ego at the door. Second thing is she was willing to be led by a trusted member of the community. Mrs. Parker was there; she’d been a practitioner. She’d been talking health in the community for many, many years. And Dr. Shah was willing to say, okay, I’ll let you tell me I, and I won’t tell you everything about what I’ve got. I’ll just listen and come along. So, she became, and it’s an important thing, a collaborator. She worked with Dr. Parker. She treated Dr. Parker and those around her with respect for their expertise. So maybe she knew more about than anybody else about Parkes’s disease, but she understood and respected the fact that they knew more about how to reach the community. And if the goal is ultimately to uplift the community, raise awareness, and do hope, it doesn’t really matter what everybody else’s credentials are, what matters is how do we get there? 

How do we get the goal accomplished? The third thing is, not only was she willing to be led by Dr. Parker, but she also joined Dr. Parker. So, when we talk about how you earn trust in the community, Dr. Shah said this was years in the making. And that’s right. That’s a very critical step in reaching communities. You must be present, but not one, and done not throw up a webinar, not, okay, we’re done. I don’t, you should know everything about. No, you have to be there month after month after month, year after year after year. Because quite frankly, this is human nature. You’re not going to trust someone who simply shows up and tells you what you ought to be doing. That’s just not the way people are built. So human nature is, I, I, you know, I want to really understand and believe that you are committed to this. 

And Dr. Shah showed that. And she didn’t just show it by being there. She was willing to admit where she didn’t know, and if she made a mistake and willing to adjust and willing to follow along. And those are absolutely critical and often missing in initiatives to engage the community. And I’ll say two more quick things. I mentioned that she valued and respected those she worked with as peers and for their particular knowledge. Well, let me take it as a step further. She also recognized and valued that no one is better at explaining the PD journey in communities of color than members of the community of color. And so, she has made her mantra to uplift the voices of those in the community, to state their own priorities, to say what’s important to them and to, and to identify what their needs are. 

So rather than the voice of the practitioner, the service provider saying, well, this is what PD is and this is how it impacts you, and this is what it’s going do to your life, she says, no, what’s more, important is, and the result is the PD mover’s book, the voices and the stories of those who are in fact, the actual experts on the subject, their lives, their stories, their needs. So, I want to commander for earning the trust of the community by being there, learning, opening up, being receptive, and going beyond simply the technical expertise of the disease. And she didn’t say she wanted to continue to just tell people what PD is. She said, no, I want to become a trusted resource when you need me. You can find me. You can c you can come to me. I’ll be right there waiting. But I’m willing for you to tell me what’s important. And I will step forward with my resources to assist, to help, and be there. 

Claudia Martinez: 

Well, thank you. Thank you, Bernard. I think that you pointed to very, very important aspects of building trust and also representation. And PD Movers is a wonderful example. And actually, Sarah just posted on the link. So, for those of you who are not familiar yet with PD Movers, then you can download the PD Movers book. So, make sure that you check it out or click on the link, so you have it available. But as we move forward with this discussion, I would love to hear when this point of view on these important topics that Bernard taps into when the, what has been your experience in outreaching, and what has been the challenges that you found that also those key points that have helped you open the doors when, you know, trying to outreach to the black and African American community in the Philadelphia area? 

Wendy Lewis: 

Well, thank you, Claudia, and thank you for Bernard for like really synthesizing what it means to be part of a community and how to build that trust in a community. And Dr. Shah, obviously, thank you so much for, you know, just your hard work and dedication and stick to this in this process. So, I’m, and speaking from the behalf of the Parkinson Council, sitting in a community which has about a 46% rate of people of color living in the region. And that, and that reach that region ranges from African Americans to Hispanic, Latinos Asian it has been a challenge for organizations to reach different communities with different messages that resonate. And so, one of the things that we talked about as an organization is that as we partner with these big institutions that we consider like really very strong partners, Penn and Jefferson and Moss, and, you know, all these amazing groups that are doing this work that are just doing it every day, is that we realized that sitting in a community with a majority of people of color and having a waiting room that doesn’t represent that pe those people of the people of color, was an eye-opening experience for a lot of our partners. 

And I think all of that resonated for us during the summer. I call it the summer justice Summer of 2020 when we realized and recognized that there were some systemic barriers to care to, in, within these institutions, we realized that you know, whether it’s access to appropriate insurance or the right insurance or transportation or, you know, just even understanding Parkinson’s, we knew that there was something that we could do better. And actually, helping first for us to learn who the community is, where the community is within our own, within our own systems, and also to like look and reflect back on how the community sees us. So, it was really important for us to do that deep dive, be really reflective about the fact that where all these have these institutions that have all these resources as all this expertise, they had a little trust from the communities they were trying to reach and serve. 

And so one of the first things we looked around when we created this group called the Diversity PD, which stands for the Delaware Valley Endeavor for Racial Solidarity in Parkinson’s disease, which thankfully to the Davis Phinney Foundation, we can do some of this really good important work, this vital work because we’re a grant, community grant team, is that we realized that the first thing we need to do, educate ourselves because we wanted to go in and g guns blazing. This is what we have, you need it, you’ll take it, and then everybody will be fine. And it just did not work. It hasn’t worked for years. And so, what we realized is that we had some people that were missing from around the table. We had those faith-based leaders that were trusted in the African American community, the Latino community, and the Asian community that we had not done any really real outreach to or any real, you know, sit downs with or hearing what their issues were. 

And so, what the first thing we needed to do was to reach those trusted members of the community. Even though we had all this expertise, we had movement disorder specialists, we had nurses, we had outreach coordinators, nurse navigators, social workers, we had every single member of a com comprehensive care team that was trying to do this work. And they couldn’t really get to the point where they could do the work in a way that was viable or even sustainable over time. I mean, yeah, they put money into like, you know, providing outreach coordinators or you know, somebody who can get out into the community and into the education. But it was really kind of a fit and start, you know, somebody will do a little program and they’ll come back into the institution and then they’ll do another little program and they’ll come back to the institution. 

And the institution put tremendous amount of pressure on those folks who are doing that kind of work. Like, okay, well we’re investing in this and, but where are the people that you’re talking to? Why aren’t they coming here? And so, it became really clear that it needed to be done over a sustainable long period of time, that it was a, an opportunity for those institutions to listen to what those communities say they wanted, not what the institutions thought they needed. And so, it does take a lot of time. And so, after two, almost three years of doing this work, it is, we see, we still see these gaps that exist in terms of how we are communicating not just among ourselves, because I think we all want the same goal, but how we’re communicating because things, in times things shifted, I think the pandemic really shifted a lot of people’s mindset, you know, if, you know, isolation happened. 

And so now not only do, are you dealing with the physical, the veer the visible aspects of Parkinson’s, you’re also now dealing with some mental health issues from social is isolation. So now we have to shift our language and I, what are we going attend to now? What is the thing that we need to, you know, be most aware of related to these communities? Depression and anxiety already exist in a lot of these communities. And when you’re ping on a chronic disease, how are you, how are you communicating those things of, of what you’re able to provide to both respond to their Parkinson’s? And then there are mental and emotional needs. And so, we’re shifting a little bit, A lot of the folks that we initially relied on, which were the moving disorder specialists, they’re there, but we know that the social workers are now front and center of a lot of that work. 

You know, when you’re talking about, you know, working with care partners and how care partners are able trying to navigate these, not just what’s happening to their loved one, but what’s happening for them as well. We’re relying on the nurse, we’re not relying on social workers to be able to come back to us and say, this is what we’re seeing. This is what they’re saying they want, and how are we going respond to that? So, while, you know, Parkinson’s is so many layers and tears to, you know, how Parkinson’s impacts families, you know, you have to be on the lookout. You have to listen, and you have to be aware of what the community is saying they need over any given time. So, it will, you have to keep an open mind, you have to be able to keep an open heart and you have to like to be very aware of what’s happening within your own community. 

So, I really commend Dr. Shah and, you know, others on this screen for all the work that that they’re doing to make sure that there’s a holistic approach when dealing with Parkinson’s. It doesn’t Ch but it, but it’s not a one and done it constantly evolves, and you have to keep on top of what those needs are within the community, which means that you have to put yourself in a position to be able to listen and be available and be present and be authentic. And that’s hard because people want to, you know, solve things. When you’re in this position, you want to solve it. And sometimes the answer comes from that community. It doesn’t necessarily come from your lab or your clinical social, you know, or your clinical, you know, research or it, it will come from the community. They’ll tell you exactly what the things are that are important to them and how you respond to that. Did that answer your question, Claudia? 

Claudia Martinez: 

Yes, Wendy. And you touch on so many important points and I’m really happy that we are getting comments and in the chat saying, you know, how interested different participants are in learning more about this topic. So, we are also really gr grateful that we’re not going just have this opportunity, but two more webinars that are going take place, you know, in the months of February and March so that we can continue talking about this important topics and how we can, you know, do a better, better job when trying to outreach to diverse communities. And Wendy, you ta you talked about the importance of listening and also giving, giving the people the opportunity to say what, what their needs are how we should approach them. And I think that’s part of the beauty of PD Movers as we’ve noticed before, that this is the voice of the, of the community, the voices of real people living with Parkinson’s and with their families as well as their care partners. So, I want to ask Denise, because Denise and Bernard are one of the couples whose story is part of the PD Movers. So, I want to ask Denise, what or how first, how you decided to be part of this project and what’s the value that you think that all these stories have when you know, they were put together in PD Movers? 

Denise Coley: 

Well, I have been a Parkinson advocate shortly after my diagnosis, and I’ve been doing a lot of talks and webinars and I actually was on a webinar with Dr. Shah, and she was talking about her thoughts and what she was going to do. And so, it was a natural synergy and we got together and started talking and we went to the meeting. And the thing that I had to say touched me most as a patient or a person with a Parkinson’s, you come to the Zoom meeting and the whole screen is full of faces that are black and brown. I have never been in a single meeting where there are that many people who have the disease or are community members or care partners. It was a touching moment for all of us, which never went away. And that’s probably the only time I’ve met that many people who are people black and brown. 

But most importantly, it falls into what everyone else has said before. It’s about trust and communication. And so why would I want to do this? I want people to know that there are people who look like them, who can get the disease. Parkinson’s is an equal opportunity disease that doesn’t care about your age, it doesn’t care about your ethnicity, it doesn’t care about your sex. You might get it or one of your friends might get it. So, it’s really important to go to the community to have conversations, to talk about Parkinson’s so that they can help people have hope and have quality of life. So, when I thought about my story, I thought every story in that book is genuine and authentic according to the person who said it, because each of us has Parkinson’s, but each of us has different aspects of symptoms or reactions to Parkinson’s and it changes over time. 

And that’s the beauty, the fabric, the cool, the tapestry of the PD Mover’s book. We’re seeing all these different individuals personally sharing their stories as they live through Parkinson’s. And each of us had different reactions when we first got the diagnosis, I told the doctor that he gave me a death sentence. Other people said, well, during the journey I looked about several linings and having hope. So, it was a beautiful collaboration to look at it. And it goes back to, if you can’t share and tell it to other people, how will they know that there’s somebody there who’s suffering, who looks like them and can give them good advice through their life experience? So, each person in the book took their life experience and told the stories of different things that happened so you could see the diversity in it. And then on top of that, we had Dr. Shah who talked about the symptoms, the medical, what you should do, what are miss, what are not miss. So, you have one nice educational tool or handbook, whichever way you wanted to look at it, that can take a person through the Parkinson diagnosis, what to expect, what you can do, and hear personally from the individual. So, when I look at it’s important to first tell a story. All of my meetings that I’ve had before Parkinson’s and after, we always have the first couple of minutes where each person tells their story. So recently I’ve been going out with people in the last few years. I will tell my story, then they have questions, then I say, now you had to tell me your story. And that really brings a good com camaraderie and collaboration. So, if we look at the PD Movers tool, we’re telling our story, why is it important? 

Because in the black community it builds trust. But another important thing about stories is culturally, there are a lot of cultures that storytelling is so important and is oral history that is carried from generation to generation. This book is an oral history of black and brown people with Parkinson’s. So that is a good way to come into the community. Second of all, when you go to the community, you go in with someone who is actively engaged. And that was Ms. Anita Parker, who is a social worker and with the church. And she bought the church and community in through her faith-based organization. And through her job as a social worker. Then once you have everyone together, you can’t just tell them, you’re not going go in there and sell lemonade if that’s what you’re selling. You want to know what is going on. So, when you go into the community, you tell your story, they tell their story, they tell their needs. 

So, you’re there to listen and learn. And once you establish the trust, continue to come back so that they know that you’ll come back again and again and work together to bring the information and resources and help people in the community know what is so important. Because when you get that Parkinson’s diagnosis, at least for me, I had this moment like, okay, so I thought it was a death sentence. They said, you can have a good life. What does quality of life mean? What do you have to do? So, there’s stories about exercise, about food, about hydration along with the medication that you take. So, it is really important to have in one place everyone talking about the different aspects so people can relate to what’s being talked about. And then last, once you have that trusted relationship with the partners in the community, you can come back and give more information and hopefully that they’ll pass it on. 

The greatest hope for us is that this book started out as an eBook. Anybody could get it in distribution, which makes it livable. I’ve had friends from all different cultures ask, where can I get the book and when will the hard copy come out? Because I’m sharing it with my community because it’s so important. Everything here and one page one book that shows culture. And so, as a need that is really great. I’m thankful that all my peers also tell their stories because it’s a difficult thing to sit back and think about when you got the diagnosis and the journey you’ve been to this point. And it takes a lot for some of us or most of us to share the most personal instances so that others can have hope. So, my greatest part of it is the value of telling my story and hearing everybody else’s story, and that people will know that they can live well with quality of life and have hope with a disease that’s not curable. 

Claudia Martinez: 

Yes, thank you so much, so many valuable things that you’ve shared with, with us. And then one of the things that that I want to point to before I forget is that in the chat, besides the link to access to the PD Movers, you can also find some social, social media pages that are also important in order to continue learning and sharing about PD Movers. So please don’t forget to check those. And also, I want to share that for net the next webinar, we will invite the illustrator who was part of PD Movers. And I think that that that was also a really interesting approach and very successful approach to have this person to be part of the project. Dr. Shah, would you like to share a little bit about it? 

Harold S. Shah: 

Yeah, sure. And so, in terms of the illustrations and the entire production of the book, an another thing I just wanted to mention is that it was really important for me that it was collaborative, and everyone was included from the start. So, from our very first meeting after we planned and invited the participants, we had a video producer and an illustrator all on the call from the first meeting. And so, they observed that powerful moment that Denise described when everyone looked around the zoom room and saw faces that looked like themselves. And I think we all felt like something really special and powerful was happening. There was such a powerful moment of a sense of connection that happened right then. So, and from the printer as well, we wanted to support, you know, a black printing press so that from start to finish the project was really built around identifying that as the community partnership. 

So, in terms of an illustrator, it was also through word of mouth. But, you know, I looked for instance, like on Etsy, on different platforms for illustrators that might be appropriate. And when I saw Randy his work, I think it really resonated with me because the images were so lifelike and you could, it brought the person to life. And having illustrations allowed us to tell a story in another layer. So, you could have the images of the individual in the church, you could have the image of someone in a hospital bed with the picture of their family at the foot of their bed, and how the hospital room feels a bit cold and isolating. And I think that the pictures became another character. As a part of the PD Movers, we also included a little shadow figure that some may have noticed in some of the illustrations, which was thought to be a metaphor for Parkinson’s disease, where it becomes like this extra person that somehow is in your life and has become this intruder. 

I think many of the PD Movers shared how there was this uninvited guest that now was a part of one’s life. And I think that having that shadow was another way to communicate that. And I think that, you know, people have looked at the storybook and some people start with the pictures. Some people are the pictures are what draws them in, and it makes them curious and wants to read the book. And I think what we keep hearing over and over again as this resource has been shared is that it’s a 62-page you know, item, and people read it from start to finish. And so, to have someone reading an educational resource I think it speaks to the compelling nature of the images, of the authentic voices in the stories. And that’s really what’s made it resonate and relevant. 

And when we, you know, you read the literature about community-based participatory research or community engagement and how that really increases the relevance of the item to the community, I think this is that in action. But I do want to say it was not easy. So, I don’t want people to think that you could, even if you go into the community and you listen and you have all of the best intentions, as I think I do and many of my colleagues do, of course, we all want to help. But I think that we have to recognize that I made a lot of missteps as well. And I think I was very open and willing to admit, you know, that I needed to learn to. So, there were periods of time where there were lulls because some of the participants, I think naturally as Denise said, it’s hard to share your story and be vulnerable. 

So that took time for us to develop that kind of trust and relationship where someone’s willing to talk about that really low moment where they were diagnosed and maybe on the floor crying because they didn’t want to take their medications or you know, the moment where they admitted to their doctor that I, I’m not taking medicines for whatever reason, and these are not moments that are easy to share. So, in some cases, you know, some of the stories poured out of the members and others, we had to, it took time to cultivate that trust and ability to share. So, I just, I also don’t want any of the listeners to think that it happens overnight or easily. It takes time. And we of course made our own mistakes, and we continue to make mistakes and our learning. But I’m trying to be open and even if I’m like, oh my gosh, I don’t think I can do it. I keep making these mistakes or I’m, I might have upset someone, or maybe we could have done this better. I think it’s important to start the new day and say, okay, you know, what is our mission? What is it that’s driving us to continue this work and how can we take it forward? So 

Claudia Martinez: 

Yes, thank you Dr. Shah. And as you said, the book itself, even if it took time for the stories to be able to be, to be shared, I think I’ve heard in one of our previous conversation that just the fact of having the book, I think it was ese that said that it makes it so much easier for some people to start those conversations because some of the, some of the people who have been diagnosed with Parkinson’s many times even doubt or take time for them to be able to share the diagnosis with their own families and to involve the younger generations in their families. And so, the kids, the people who, who have young kids or who have teenagers this has in any way this this book being a tool for them to approach their own family in, in your experience. 

Denise Coley: 

I’ll go and answer that one because I wanted to follow off on what Dr. Shah said. The job that Randall did is the best that we could ever think of. I had not personally talked to my grandchildren about Parkinson’s, but with the book, I could take the book with two at a time, two at a time about Parkinson’s and starting with the eight-year-old and the 11-year-old, they went immediately to the pictures, and they went through the whole book, and they had a thorough understanding and asked one or two questions, and the youngest one walked away, but the 11-year-old read the book. Then we did it with the 13-year-old and the 10-year-old, the same type of thing. Taking the pictures that Randy had put out as a story base going through the whole book and then going back to read the book, it made a tremendous amount of difference. And it was much easier for them to understand the disease as opposed to, well, why grandma does this, that, or another. This is a very holistic way to do it. And it worked quite well. And I think that for people who are hesitant to talk to little ones, this is a perfect tool to use that. 

Bernard Coley: 

I want to add a couple in the series coming up, I invite you all back to webinar series two, where you are going get to meet many of the people who told their stories. And I’m just going to throw one out on this topic, which I think is absolutely critical. We got many benefits out of the book that we, that weren’t part of the original plan, not expectation. One of ‘me was one of our members Mr. Smith has had Parkinson’s for many years. He took the book with him to his family’s holiday dinner and shared the book. And he, when he came back, he shared with us what an amazing experience it was as his brothers and sisters relayed to him that for the first time in the, I guess his 15, 18 years he’s had Parkinson’s, they began to understand what he was going through and why he wasn’t communicating. 

So, we are extremely excited that the communication isn’t just reaching Under engaged communities, it’s helping members of the Under engaged community reach each other, their families, the important people who will make up their care team, who will be there to help them out now that they understand. So, we’ve gotten this benefit out of the book that goes beyond the technical part of explaining to people what Parkinson’s is. It’s letting people understand what the Parkinson’s journey is and allowing people’s voices to come out. Mr. Smith got to talk the family, his voice matters now in the family, they understand more about why he is the way he is and what he has done and are able to express back to him. Not so much sorrow, oh, it’s too bad you’re going through this, but more we’re there for you know we understand what we can do now. 

Tell us what we can do to help in, in a way that’s really meaningful. Not just, oh, I’ll be there if you need me, call me. It’s like, oh, now I understand a lot more. And for us, that is just extremely exciting. We’ve got communication going on, as Dr. Shah said at many levels. And that’s been a beauty of the book, and I’ve tied us together with the illustrator. Denise and I have actually talked about this book in several presentation, and I actually don’t go past the first page. I can tell you everything about this book on the first page because what I tell people is this cover itself communicates and speaks to our community without reading a single word. You see hope, you see our fu our, you say faith. So, several people ask, well, how does it bridge the gap? 

Well, let’s how bridge the gap it speaks in a language that we understand it’s immediately gotten; we have a translator. We, you see everything about our community and that family, et cetera. On, on and on. It all came off of this initial picture. Okay? And it communicates things that are important. The story adds the story wraps around education, but this is critical. We’re talking and if you’re going raise awareness, you’ve got to get discussion going. So, a key bridge that this book has, this why we call it now a tool, is it’s been a tool to open the dialogue, it’s opened up the conversation. It’s allowing us to talk about what hadn’t been there before and what’s there now, what things are needed in the community and why certain other professionals in the community are just as important as the medical profession. 

Claudia Martinez: 

Yes, definitely so many, so many benefits from this tool and we want to make sure that we give some time for the, to get an, the answer to some of the questions that we get in the chat. So, I’m going follow up with this one that relates to the book itself and this participant ask the book, the book is so beautiful, in addition to being informative and inspiring, how did you determine the format you use for the book and what is the importance of the visual language? And I think the largest just tap into, into the importance of the visual language as well as the needs. But then what about the format then Dr. Shah, or would you like to an answer that? How was the decision made 

Harold S. Shah: 

In terms of the format? I’m not exactly sure what the question is about, but I’ll answer it this way. That we knew we wanted to describe the journey with Parkinson’s from, you know, when one recognizes initial symptoms to getting the diagnosis, engaging with treatment and care, and then living and thriving with the disease. And that’s kind of the general story arc that we wanted to take. Of course, everyone’s narratives didn’t neatly fit into those categories, so, but we started with what narratives we did have, and we went through and kind of would plug it into that so that it would make a more cohesive story arc from beginning to end. And we wanted to also make sure that we captured and emphasized certain themes and messages that came across throughout our conversations, whether that be the fact that minorities often face delays in diagnosis, which was exemplified by Mr. Huckabee’s story, where he unfortunately, you know, went through many misdiagnoses and the frustration that followed.  

We knew we wanted to emphasize the role of faith in the community, and so we made sure to highlight those aspects of the narratives because I think in the African American black and brown communities faith spirituality is such an important part of one’s life, but also how one copes with a disease like this. And then we wanted to also be sure we included the care partner and their perspective and a variation of care partner perspectives, meaning like the spouse perspective, which Bernard provided, but also lo Ms. Lorraine Hay, who is the daughter and juggling, you know, living her life, working with an older mother who also needed her care. So we were, you know, it took a lot of conversation and again, collaboration of are we getting the message right? Are we, is this sounding right? Is this resonating with the PD Movers? And I hope Bernard and Denise would agree that, you know, they, they would get a lot of copies of feedback and what, you know, we would had a lot of back and forth. So, but I think those were the general principles that we tried to follow as we put together the product. 

Claudia Martinez: 

Thank you Dr. Shah. And we have another question that asks as how do you include the community without overburdening them and being sensitive to the emotional toll that it could take to share these stories? 

Harold S. Shah: 

Yeah, that’s a great question. So again, I think it’s about listening and respect that you ask, you know, even what time of day should the meetings be? So, we had some meetings in the evenings and sometimes during the day to kind of try to get folks at that, their availability and being respectful where some people could contribute more at certain times, and there may be an ebb and flow. Some people life went on during this period, right? So, there were times where some people were d pr were dealing with an illness or a family member that was going through a medical problem. So, I think it’s about just, again, listening, being respectful and going with the flow to some extent. And, but continuing to lead and keep things moving forward so that we also didn’t want the project to kind of stagnate and languish but recognizing that there was an ebb and flow to how much people could participate in at different times. And I think that when people feel, and maybe I should let Bernard and Denise speak to this, but it seems to me that when people feel heard, they’re more motivated and more willing and more interested in being engaged and it becomes a natural dynamic that evolves. 

Claudia Martinez: 

Thank you, Dr. Shah. And going back to what I think Bernard tap into, there’s a question that asks, what change have you seen in your community with this tool? How have people of color living with Parkinson’s improved their quality of life through the connection to this tool? 

Bernard Coley: 

Let me throw something out really quick. So as Denise and I have been on this journey working and trying to bring the Parkinson’s awareness to our community, Parkinson’s disease is not one of the big five in the black community. No hypertension, the heart, I mean, we just are not in the big five. So, you go in and initially, you know, nobody wanted to talk to you, what’s this Parkinson’s thingy? Whatever this book has opened the door to where the community health community want, sees the value of the tool, sees what it’s doing, Parkinson’s is now on the menu. So, the critical thing I want to say is that we’ve cracked the getting at the table with the big five, which he wasn’t happening very well before because what you learned from this book is more than just, again, Parkinson’s disease. You learn about dealing with the generative brain disease, you know, the diseases with no cure people around you and how they are coping. 

And that message exceeds just a Parkinson’s diagnosis or a Parkinson’s problem. It’s how do we live, how do we go, how do we deliver the support that can be given. Raising the voice of people who, you know, for, who see themselves for the first time getting to talk. You know, I, you know, I don’t want to criticize any other organizations doing to see specific work, but you know, a lot of people are making or have made the same mistake. They want to go into the community, tell ‘me what to do, and there, and they’re going. So, what this book has done is we hope that it will be a model. So regardless of what the primary is issue, the medical issue is that people see this is the way to get the conversation going. This is the way to inform people about how to have better lives. This is the way to help. 

Harold S. Shah: 

And just if I could just say one thing is Sure. One change I’ve seen even in my practice is just to underline, it’s allowing people to feel like they’re not alone, and it’s allowing them to feel like they’re part of a bigger community and they’re connected. You know, I see general neurology patients and I can’t tell you how many times after just sharing this more broadly to raise awareness about Parkinson’s disease, people will come out and say, oh, my aunt has had Parkinson’s for 15 years, or, my uncle or so-and-so has the shakes, or, but it’s, and I keep hearing Ms. Parker’s words that she would say that people are living in secrecy, that they don’t talk about it, and we’ve got to get people to start talking about it. And so, I think that when someone like Mr. Smith, who’s a football coach is a strong black man and is sharing his story and being vulnerable in talking about mental health challenges, I just think it opens the door for others to do the same. Right, 

Claudia Martinez: 

Definitely. And we have a question for Wendy in the chat, and it’s it, this participant asks, have you introduced this tool, this Speed Movers tool into your work? And what have you seen happen with these stories in the work you’re organizing in Philadelphia the Monday? 

Wendy Lewis: 

So, thanks for the question. So, we have shared that amazing book with all the members of our diversity PD group. They all are filling very excited to be able to take this as a tool first to learn themselves. I mean, it’s a learning, it’s a tool for the providers as well and the other community folks for first to learn and read those stories and hope it resonates when they talk to their, you know, their patients or their family members about the importance of having that support group to having, I think, think we’ve used it as a tool for education, but also creating that sense that you are not alone. That there are other people in the community here to support you, but the hope that that specialist or that nurse or that, you know, social worker will say, well, I’m here too. 

This is you. I am now part of your community. This is a tool to help you sort of see that there. That it takes a, for lack of a better word, takes that village and takes, you know, you can expand upon that village. You can include endive individuals from families. You can include part of your care partner team. You can include members of your church community or your, you know, your faith community to help support you. So that we’ve used it as a tool to actually have them expand their sense of awareness, those providers in, and allow them to open the door to have a conversation with individuals who typically may have been less forthcoming about their experiences. So, it’s really been a tool for them to actually share, you know, what they’ve learned and also have the client, or the family members share what they’re going through as well. 

So, it is actually serves as a dual purpose for our group. You know, it is a not just a tool to give to the community, it is a tool for us as community to learn more about the work we do and how we can help and support families. So that’s what we’ve done. We’ve introduced, and we’re talking about a reach, if you’re talking about sharing within the communities of Jefferson and Penn and Cooper and Temple, we’re talking about thousands and thousands of opportunities for this book this tool to get into the hands of family members and people living with Parkinson’s. So, they’ve, they’ve embraced it, they are excited about it helps open the door for conversation and it also helps us learn a little bit more about ourselves and how we can support the community as well. So, yeah. 

Claudia Martinez: 

That’s wonderful, Wendy. Thank you for sharing. And also, we want to thank a lot of the participants who’ve left comments about, this series and including people from the Parkinson’s Foundation in West Pennsylvania and our friends from the Michael J. Fox Foundation as well. So, we are definitely very happy to be able to put, put together this series and we want to make sure that you join us again next month for the second webinar. And we will definitely let you know or send you a reminder the fact that you register for this first session means that you will be automatically registered for the two following ones. So, we’ll definitely follow up as well with the different links that we share today in the chat and we’ll make sure that we are, get to answer any questions or comments that we weren’t able to get to today. 

The Power of Story: On Using Narratives in the Black and African American Community to Connect and Inspire Those Affected by Parkinson’s

You can download a pdf of the transcript here.

The Power of Story: On Using Narratives in the Black and African American Community to Connect and Inspire Those Affected by Parkinson’s

Note: This is not a flawless, word-for-word, grammatically-correct transcript, but it’s close. 

Sara Linn (Ambassador Leadership Program Manager, Davis Phinney Foundation): 

Hello and welcome everyone to the second webinar in our Raising Awareness and Hope in the Black and African American Parkinson’s Community series. Today’s webinar is called The Power of Story on using narratives in the Black and African American community to connect and inspire those affected by Parkinson’s. My name is Sara Linn, and I am the program manager for the Ambassador Leadership Program here at the Davis Phinney Foundation. I am joined today by my amazing colleague, Gabby Dimotsantos, who will be helping me lead the discussion with our panel of storytellers here. Hi Gabby. Would you like to introduce yourself? 

Gabriella Dimotsantos (Community Engagement Manager, Davis Phinney Foundation): 

Hi, yes. Thank you everyone for joining. My name is Gabby Dimotsantos. I am the Community Engagement Manager here at the Davis Phinney Foundation, and I’m just grateful to be co-facilitating here with you today, Sara. 

Sara Linn: 

Thank you. With that, I’m going to invite our panelists to turn their videos on, and I’m going to kind of pass it off to Gabby to start introductions for us today. 

Gabriella Dimotsantos: 

Hello. Wonderful to see your faces again. Thanks for hopping on. So, I have the joy of introducing our panelists here today, and what I’ll do is just go around the screen in the order that I see you and we’ll see if it’s congruent with the way that the audience sees you or not. And as we go through the introductions, I would love to hear a little bit about your story and how it has personally impacted you being involved with PD Movers. So, Mr. Kermit Smith, I have you first on my screen as our PD mover, if you’d like to introduce yourself. 

Kermit Smith (PD Mover): 

Yes. Good afternoon, everyone. My name is Kermit Smith. The first thing I’d like to do first is to say thank you to the host for giving us the platform to share what’s going on in our lives as far as living with Parkinson’s. And I often say, I mean, everyone knows Harriet Tubman was a slave, Frederick Douglas was a slave, but they needed platforms to bring forward the plight of the slave and what it was like to come to Freedom. And that’s what this does: gives me a platform to let people know that you can live, and you can thrive with Parkinson’s, but it takes work. I mean, I’m 67 years old, next week I’ll be 68. And I was diagnosed with Parkinson’s in 2015. The first thing I noticed was that it wreaked havoc with my life, I didn’t really realize that I had Parkinson’s. My doctor said you need to go to a neurologist and be checked out. 

I went to the neurologist, and he told me, he said, I think you have to beginnings of Parkinson’s. And I ran away, said, no, not me. I don’t think so. That’s for Muhammad Ali and other people, I don’t have that. Then I prayed for longer life. I realized the differences, you know, differences, the way I was walking, the way I was talking, the fact, you know I didn’t have much of a tremor, but everything else seemed like it was off. My fine motor skills were off. And then I said, well, you know, maybe they have something here. Maybe I do have Parkinson’s. And that opened up a door for me, a door to let me know that, you know, I was in for the fight of my life. I was in for the fight of my life. I wanted to succeed in life and do the things I wanted to do in life. 

I need to learn how to have, how to fight, how to live with Parkinson’s. And I often say I’m very mindful of the way I speak about it. I never say I suffer with Parkinson’s. Never. I live with, I have a funny way, I have a, my own way of speaking about Parkinson’s. I call Mr. Parkinson. I call Mr. Parkinson’s because I have a healthy respect for him, but he plays havoc with my life. My job is to not let him do that. Find ways and means to not let him do that. And there’s help out here for, you don’t have to suffer with Parkinson. You can do whatever you want to do. Brought me the PD movement, my neurologist, she asked me to be part of the group that wanted, to bring awareness to the African, African-American, or community about Parkinson’s. And that’s right. 

I love doing that. Anything that I help my people, I will do basically anything that helps anybody I would do when it comes to our people, I would do it, you know. Cause as first and foremost, my mother was an activist, my brother was an activist, and my sister was an activist. So, I’m an activist also. So, this, you know, being a PV is very, very important to me. Very, very important. It just, you know, it’s just something that I’m born to do. And God gives us all something to do in life. You know, we find what we need to do. God gives us something to do. My job is just to be obedient to God and just do it. I’m very happy to be a people mover. I’m very happy with what I’ve been presented with today. Thank you. Thank you. Welcome for coming. 

Gabriella Dimotsantos: 

Yeah, thank you so much. And we’re so grateful to have you here and share your story. It’s so powerful and really appreciate your metaphor in naming Mr. Parkinson. I think that’s such a nice way to kind of identify and separate that part from an identity. So, I think that’s really powerful. Thank you. Richard, I have you next on my screen. If you could share a little bit about yourself, your story, and how it has personally impacted you being involved with PD Movers. 

Richard Huckabee (PD Mover): 

Well, hello everyone. It is a pleasure being here, and I’m just excited to be able to share my story because I’m just so grateful that I’m able to, you know, I wake up every morning with joy and gratitude, and thankfulness that I’m still here. I would like to definitely thank the Davis Phinney Foundation for giving us this platform. I would like to thank everyone involved and the PD movers because this is an outstanding resource and an outstanding book, and we hope to reach the black and African American communities so that they will understand that there’s hope. So, we’ll get into that. But like I was saying, my name is Richard Huckabee. I was diagnosed with Parkinson’s Disease in 2013, but my story really started nine years before that time, it was in 2 0 4 that I realized that something was wrong with me. I knew something was going on, so I went to the doctor and all I could say was, I just don’t feel like myself. 

I just don’t feel right. So, he gave me a number of tests and said, you’re fine. I would do that for the next nine years. I would be diagnosed with Lyme disease, vitamin deficiency, stress, and panic attacks. I would just have so many misdiagnoses during those years, being in two 13, my doctor was getting transferred to Florida. So, she said, we done tried everything, Richard. We done had you hooked up to machines, MRIs, everything. And I just don’t know what’s going on with you. But since I’m getting transferred and before I leave, I’m going to send you to a neurologist. I went to that neurologist’s office and within the first 10 minutes of doing certain procedures, he had me touch my nose, touch his finger, touch my nose, touch his finger. He had me do this. He had me walk. Then he said, you have Parkinson’s disease. 

And I tell you, I was devastated. I was happy on one hand to know what was wrong with me, but I was devastated that it took so long because so many things had happened to me along that journey. I lost my job because I couldn’t maintain, I was having cognitive issues on the job, calling people by the wrong name. I had an executive management position, so I had to do a lot of tasks, and I just couldn’t remember. It was, I was freezing when I talk. I would hold a manager meeting with 40 people in the audience, and I’m leading the meeting. And you could imagine I’m the only black face in the meeting and I’m hosting it, and I’m freezing up there not understanding what’s wrong with me, and having to tell them, I’m sorry, I’m going to have to finish this on email, and I’m going to have to call an adjournment to the meeting because I froze. 

It was just devastating going through the nine years before I got diagnosed. It was just a whole lot more involved in that. But I was happy to get diagnosed. And the one thing the neurologist did for me, because he couldn’t really give me any answers other than you have Parkinson’s disease, he almost made it sound like it. I was doomed. But he said I will give you therapy. You could go get Parkinson’s Pacific Therapy. And really that changed my life because when I went to that therapy session, what happened there, it was a drumming and exercise study that was coming up, and the therapist invited me to join that exercise study. And in that exercise study, it was a group of people, other couples, and individuals, and we met, and we actually became friends. And this was in 2013. And still today, we are friends. 

We get together for hikes; we get together for breakfast. We get together for birthday parties to celebrate with each other, and we talk. And from that connection, doors just started opening up. I learned about exercise. I learned about I should be going to a movement specialist or neurologist instead of sticking with my general neurologist. So, when I went to the movement specialist, and neurologist, the first thing that that specialist did for me was send me to a PD 1 0 1 class. Now, this was two years after I was diagnosed. I got sent to a PD one on one class. I talked about all kinds of resources available in my area from support groups, and seminars. It was just a wealth of information. And it was there all along. I couldn’t understand why the general neurologist didn’t know about that class. It was the same hospital system, but they just didn’t talk to each other. The right hand didn’t talk to the left hand. So, we was missing out on so many resources. 

But this neurologist did something that I talk about in the book that really set, set me back. He prescribed a dopamine agonist. And that dopamine agonist had negative side effects on me. So, I want people to be warned about what dopamine agonists can do for you; it increases your dopamine. And what it did to me was give me compulsive behaviors. All of a sudden I started gambling like crazy, didn’t understand why. And that behavior almost cost me my marriage, finances and so much more. But I was able to get a grip on it by getting help. I went to see a psychiatrist who told me about gambling Anonymous, went there, and tried everything I could. And finally, and speaking with my doctor, telling my doctor what was going on, he described something else, but it was still a dopamine agonist. He prescribed Ropinirole. First, it was Nepro, then it was Ropinirole, the same thing. 

Finally, he took me completely off the agonist and my compulsion went away. But in the meantime, I had talked to lots of people telling my story, that particular story. And they were saying they had compulsion shopping, compulsion, sex addiction, porn, addiction, just whatever. They had the propensity to; they were experiencing it. And I was saying, talk to your doctor. It may be that agonist that’s giving you these urges and let’s get off of it. So, I definitely want, wanted to share that part of my story, but it’s just so much. But the story ends in hope because throughout everything I learned about exercise, and I’m fortunate that I live in the city outside of Cleveland, where there’s a wonderful facility called In Motion where you can learn about exercise, Parkinson’s education, do as much exercise as you can, boxing, spinning related disease type exercises. It’s just wonderful, a wonderful resource. 

So, at one point I was going down, down, down, down, walking with a cane, couldn’t drive, falling all the time, and having all kinds of issues. But because of the exercise I’ve built up and I’m able to do more than ever, I travel. Now I can drive. My wife used to think she would’ve to drive me around everywhere, but she doesn’t because I’m driving her around everywhere now. So, it’s hope. I have lots of friends. It’s opened up a whole new world for me. And I’m just having the best time of my life, even though I have Parkinson’s disease, I’m keeping it at faith and just enjoying life. I think I went a little long, but thank you, 

Gabriella Dimotsantos: 

Thank you. You, your story is so powerful and really such a strong story of resilience and persistence. And so, I really appreciate you sharing that. And especially in this space where certainly there are others who are going to be impacted if they haven’t already been impacted by your story and your experiences of that persistence with the medical community to say, it can be better, and I know it can be better. And then to finally be in a place where you’re like, yes, it is getting better. That’s really powerful. So, thank you for sharing that, and not an off-course at all. So, thank you. Dr. Shah, last but not least, I have you on my screen here. 

Hiral Shah, MD (Movement Disorder Specialist, Columbia University Department of Neurology): 

Thank. Thanks, Gabby. So, I’m Hiral Shah. I’m a neurologist and movement disorder specialist at Columbia University. I think some of you heard from me last month as we brought together Denise and Bernard Coley, who are two of the other individuals featured in PD Movers, along with Lewis, who’s CEO of Parkinson’s Council. And you know, during that webinar we talked about the importance of building trust. And I just want to kind of underscore that today that this work and development of the PD movers came after years of working with our partner, St. Miss Anita Parker, who’s the outreach director at St. Luke AME. And she taught me so much about how we can best engage with the community. And one thing that I think along the way, as I would go to events at church health fairs, I saw what spontaneously would happen is testimony in church. 

And it was often a way that individuals participating in our brain health discussions would share an obstacle or hurdle or challenge that they faced and their journey and how they overcame it. And that along with you know, one of my training experiences where I attended a leadership conference hosted by Dr. Claudia Martinez where she shared her work of the Proma Torres, where she had developed a flip book as an educational tool. But I think it was all of that put together that really created this idea of creating a book that includes first-person narratives, where you’re really hear hearing from the individual, because obviously I don’t need to tell you all, but how powerful stories of Mr. Smith and Mr. Huckabee are. And that goes far beyond anything that I, as a medical provider could do to educate the community. 

So, I think that’s why this tool, the PD movers has really taken off and, and been so engaging and well received, is because of the first-person stories of these remarkable individuals that you’re hearing from today. And that coupled with the illustrations, I think it just shows us the importance of representation, the importance of the illustrations as another tool to tell stories and give you the emotion that’s happening behind the words, which are so powerful. So, you know, I think at the beginning of this webinar, Gabby asked the question, how have we been affected by being a PD mover? How have we been changed? And I just wanted to mention that for me too. It’s been a very powerful and transformative experience. I’ve gotten to know the Huckabees, Mr. Smith, as well as the rest of the PD movers. 

I’ve gotten to meet advocates like Wendy Lewis and others in the field. And I think that it’s also just continues to enrich and inspire me to make sure that we do everything we can to empower individuals so that they can live and thrive. And I think that’s one of our greatest missions is that everyone may not have access to a movement disorder specialist or even a neurologist, but if we can somehow get a tool like this into their hands and they can educate themselves and be empowered, then nothing can stop them from making sure they get the care and treatment that they deserve and need. So, I think that’s the power of story, that when you share your story, it encourages others to open up and share their stories. I think many people are unfortunately living with this disease isolated and alone and feeling disconnected from others. And so, we hope to use the power of story to connect those so that no one feels that they’re alone in this battle. That we are all here. And that we hear you, we see you, and that we want to understand where you’re coming from. 

Sara Linn: 

Well, well really beautifully put Dr. Shah, thank you so much for sharing that. And thank you Richard and Mr. Smith for sharing a bit more about your story and, and what you’ve shared within this. And I think we’re hearing a little bit about how that’s really impacted you and, and you know, how storytelling can be so powerful for not only you, but for those around you. And so, I want to take us maybe a step back and hear from, from you, Mr. Smith, and Richard, just what really drove you to be a part of PD Movers? What really made you want to share your story and, and share those testimonies with others? Mr. Smith, I have you first, if you want to unmute yourself and share with the group. 

Kermit Smith: 

I guess the first thing that got me, that got me wanted to be involved with PD movements was my neurologist. She, she’s a very, very, very important part of my, of my dealing with Parkinson. You know it’s very important to get the right kind of doctor on your phone that you can work with. Could you get another, you have to have a bond. You have to have a feeling that she wants the best for you as much as I want the best for myself, you know? So, by speaking with her, she made me feel that I was just important, like anybody in the world, she didn’t me know that she cared about me. She cared which direction my life was going to go. And she, she wanted the best for me. She wanted me to succeed in life. So, if she asked me a part of PD movers, I, let me first give you a little background. 

I’m a person that I never wanted anybody to know I had Parkinson’s. No, I didn’t want anybody to know the last people that knew the better off I was. Cause that’s just the way I’m very detective of me of, I coach football and I didn’t want any coach to know I had Parkinson’s. I went to the gym. I go to the gym every day. I didn’t want anybody in the gym to know I had Parkinson’s. I go to physical therapy. I didn’t want anybody there to our, although they, they had to know I had positive, you can’t go to the therapy for getting the diagnosis. But I’m very protective of it. So, the, what really happened was that she let me know that I can’t help anybody and that I let go of that. And there’s something that’s very important for African-American understand. I want, I’m very protective of the word psychiatrist. 

I don’t want to go to a psychiatrist, you know, going to a psychiatrist met, he’s going to prove medications and he’s going to make me feel like I have to survive these medications. So, getting a neurologist and a psychiatrist to work together is very important for the betterment of my, of, of my life. Now, I’ve gotten, I got followed psychiatrist that was very, very helpful. He didn’t push any, he never pushed medication. Only once he said, he said, Ker, I believe that we could talk our way through. He’s the one that he, he got me back into coaching football. He got me back into traveling. He got me back onto the world of life just by speaking with we, we would meet once a week and we develop a bond. I trust him having an allow and she trust to have a psychiatrist that you trust, having physical therapist that you trust. 

It’s all a family that are working for the betterment of me. So, becoming involved with PD rubs was a way for me to pick the mask off and share what, what I commonly call my experience, strength and hope with other people. You can’t help anybody unless you let down the mask. Let people see who you are coming, let people feel who you are coming. You can help people. If you let people feel who you are, you can reach out to people. People feel who you are. They don’t know who you really are. And that includes my family. Cause I remember going to Boston and being in a hotel room with, with my brother. So, people, yeah, I live by my social people never see me in the morning. They see me after I had my medication. I’m doing pretty good after I, my first medication. 

But it happened in a hotel. My brother called me, and the medication didn’t kick in yet. So, I was taking these little, small steps without having them breakfast. I was thinking about these little, small steps. He says, who floors? I said, I, he said, it makes you do that. I said, yeah. Said, give about 15 minutes, 20 minutes, and you see them differently. So, the lady, I had a little cup of coffee got kicked in. Now taking these long steps said, wow, that’s incredible. I said that’s what we do. So, it did. I opened up my family to the fact I nurse practitioner, she realized there was something wrong and she didn’t know exactly what she know. The, a difference in my voice. She knows that I was dropping weight. She knew was my gait was off. So, she knew something was wrong with me. You know, I’m very lucky to have a sister like that, you know. 

So, the bottom line is that if a, if a family disease and my neurologist and my psychiatrist let me know that the family disease, there’s disease and people can help you. If they know what’s going on, no one can help you. If they don’t know what’s going on, come no one. I suffer. You know, like heard to one time, you know, when the doctor did you, what happened, doctor, that you, you suffer. If you suffer peace, you don’t stop suffering with yourself. Peaceful. So, I don’t want something like that. I want people to know who I’m, and by letting people to know who I’m, I can help people. Cause give prime example, a friend of mine called there, I an invitation to this, called them and said, doctor, said, I may have Parkinson’s because wow, I get an invitation to this webinar. And my doctor told me today that may have Parkinson’s. 

He called me, he knows I have ps. So, I gave him to direction. He said, well, you know, go, go see what happens when you go to then get a second opinion and get a third opinion. Be show the diagnosis, but don’t just fit on it and wait, be proactive. And that’s what I learned how to do. I learned how to be proactive. You know, you see pictures up in the background. Those are my pictures of when I went to Egypt in 2018. I learned how to do things. I go to the theater, I to at least two times a month. 

Sara Linn: 

Yeah. 

Kermit Smith: 

And I learned how to take cause because I learned how to take my medication. I can’t take it like I normally take it. I have to kind of change it around so that I can function at the theater and not have the action of I’m going down low. I can stay high, I can enjoy the show, very important. But you, you know, I have to learn how to listen, what they were telling me to do, to enjoy life. I’ve been, I’m planning to go to Ghana. I mean, I go to the gym every day. Like I said, I go to dinner. I mean, I live life. Life is a small worst thing. And I want to do the best I can to sing this song called Life as long as I live. And I better stop talking. 

Sara Linn: 

No, thank you. No, no, no. That was amazing. And I, what I heard and was picking up too, from what got you to the phase of wanting to share your story after not really wanting to share with others or be vulnerable in that, in that sense that you found vulnerability with really trusted individuals that you had built those strong relationships with through, through your physicians and, and through those, those individuals that you have really small one-on-one interactions with. I think a lot of our, our audience can resonate with not wanting to share this aspect of their life, but noticing once, it doesn’t have to be such a huge you know, shout out from the rooftops, but just those small interactions that then lead to these bigger steps is, is so important. So, thank you Mr. Smith for sharing that. Richard, I’d love to hear from you. What, what got you interested in getting involved with PD movers and sharing your story? 

Richard Huckabee: 

Well, for me, it was a natural progression of events. As I stated, when I first went to a neurologist, he got me involved with the physical therapist who got me involved with the exercise study. And from the exercise study, I met people that introduced me to seminars. But the seminars on Parkinson’s was great, but they would only come once a year. What do you do in the meantime? Well, then one of the friends that I met in the exercise study told me about a place called in Motion. Then in motion was a place where you could get exercise at no cost to people with Parkinson’s disease. And then from there, I learned and met more people and got in and got more contacts, and then started learning more about exercise research studies. So, then I started getting involved in exercise research studies down at Cleveland Clinic. 

And from there, it was, it was wonderful doing those exercise research studies because it was like free therapy. I was doing psycho studies. I was doing a combination where you do exercise and cognitive at the same time. It was just wonderful. It was showing how good movement is. Then I started getting involved with the Parkinson’s Foundation from there. And with the Parkinson’s Foundation, I became a research advocate. And my specialty in research was exercise research. So, I was telling everybody about all the types of exercise researchers that you could do. Ken State was doing them, the veterans administration was doing them. We was just getting people involved in different types of exercises. They got exercises. Well, people, some people got a free, a free spin bite. It was just, it was just growing out of a movement revolution. I was moving. And then the Parkinson’s Foundation representative told me about this organization called PD Movers, where they was trying to get some African Americans together to talk about their experiences. 

And all of the studies I’ve been in and all of the support groups, it was just a small amount of African-American to know African Americans in the group, but myself or myself and my wife. So now I had the opportunity to get with a group of all African Americans. It was just something that was new to me, but so familiar that me and my wife jumped at the chance. And we loved it. To see all the black faces on the zoom screen, it was just unbelievable. And it just went with our pattern because we have become movers. I was involved with the Michael J. Fox races. I was involved with Parkinson’s moving day. I was involved with Davis Finn, every victory count challenge. So, I was moving all along. And then the PD movers came along with all black faces. It was just unbelievable. So, I had to become a part of this, this movement, because it’s just, it just fit. Movement is medicine folks. Movement is medicine. We’re the PD movers. 

Gabriella Dimotsantos: 

Thank you. That’s so wonderful. Thank you. And just such a beautiful tie to all of it in the name of the group. Oh, what a, what a wonderful story. Thank you so much. And, 

Richard Huckabee: 

And the illustrator did a beautiful job, and the writers did a great job editing it. It’s just wonderful. You all have to get this book. 

Gabriella Dimotsantos: 

And Dr. Shah, I did get to speak with the illustrator doc, Mr. Randall Pearson, yesterday, and we did record our conversation. So that will be coming out as a supplement to this webinar series. And it was really powerful to talk about the impact of those illustrations. And I think anyone who has seen the PD movers book knows the feeling that you get when you see those illustrations accompanied by those personal stories and how moving that is. So, if you haven’t had the chance to take a look at that yet, please do go do so. And then stay tuned for that recording as well. And before hopping into the next question, Dr. Shah, I saw you came off of mute, so I wanted to make sure you had space as well. 

Hiral Shah: 

Thanks. yeah, I just wanted to add and underscore, you know, as Mr. Huckabee and Mr. Smith pointed out, I think that something really beautiful that we were able to do is, you know, these, all of these individuals, the PD movers, they all have their voices and their stories. We just created a space where they felt comfortable sharing that. And I think we were very mindful of including members of the team that were representatives. So, we were all black and brown in that core team, including Ms. Parker, our outreach director and community partner, as well as the illustrator, Randy, and a videographer Caleb, which who’s helping us develop some videos to kind of accompany the storybook. So, stay tuned for that. But just how important it is to see and recognize yourself amongst this group. And so again, we just can’t underscore the importance of representation because it allows for people to build that community and trust and a sense of kinship. 

You know, I wish we had recorded our first webinar. I think we all felt the magic in that virtual room looking around the screens of all of the black and brown faces. And I think we all felt like something magical was ha happening. And so, as you said, you know, even Randy, I think he brought his lived experience and so much that was unsaid to creating these illustrations that really resonate with the community that reflect the importance of family and faith. And that comes across without y we, us needing to explain it. And I think that really resonates with the African-American, black, and brown communities, cuz we all have that in common. And again, just to say that when one person shares their story, it empowers someone else to share their story. And I think for the individuals that are out there that may be new to Parkinson’s or don’t have as much exposure or earlier in their journey, this can be a resource. 

I know Wendy Lewis at the Parkinson’s Council told me a story about how, there was a couple that came to her that was really struggling and she was so empowered to have this tool to share with them and say, look at this book, see the stories of other people that, and that might help bring you some hope, because as Mr. Smith said, everyone with Parkinson’s can live and thrive if we allow ourselves to open up and connect to others. So, I just want to thank advocates like Wendy and others in the community who are sharing this resource. And you’ll hear from Ms. Parker at the next webinar, because there’s such an important role of faith-based organizations in storytelling and in reaching our communities. So, I think that that connection can’t, you couldn’t, we couldn’t have done it without that piece. So, part of the story also was the story of faith. And we’ll talk more about that next time. So, I just wanted to be sure I added that piece in. And thanks again to Mr. Smith and Huck Huckabee for sharing that. If, if I might point out, I know that for Angela too, Mr. Huckabee’s wife it was a really wonderful experience and I know that she may not be here or able to lend her voice, but Mr. Huckabee, I just wanted to remind you or ask was there anything that you wanted to share from Angela’s perspective? 

Richard Huckabee: 

Well, Angela was really enthusiastic about the PD movers because she is passionate about reaching other blacks and African Americans that’s affected by the disease and the, and that might have it, but not even realize it. So, she was excited about building the awareness in the black and African American communities and having this tool to talk and to introduce the topic. It’s just a wonderful tool and she’s really happy to be a part of it. 

Gabriella Dimotsantos: 

Thank you so much. And I just want to also take that moment with all of the power in how you’ve been sharing your stories. If while recognizing, being respectful of your time and want to have time for our q and a is just a couple of words or a sentence on what has been the result for you personally sharing your experiences and sharing your stories. What has that done for you? Yeah, Mr. Smith, I saw you come off of mute. 

Richard Huckabee: 

Well, for the first thing that has done. 

Kermit Smith: 

Is renew mother faith. God, I was first diagnosed. I was at, at a period in my life. I just lost my mother. I stopped working, I retired. I’ve been on my job 41 years. I was at a very low point, point in my life and then became a diagnosis of Parkinson’s. So, I was crushing God. You know, why, why you, why you giving me this? I’ve done, I’ve done the things that you wanted me to do. And now you are giving Parkinson’s, well, you realize, well, God give you Parkinson’s. P byproduct of life. I deal with Parkinson’s is, is my job. So, I wake up every morning and the first thing I do is thank God for the next thing I do. I talk to my ancestors, my mother and my father, my brother, and my great-great aunt. And I ask them all to empower me, to give, to help me to walk with them, not me. Walk, not them, walk with me, help me to walk with them. The next thing I do, I say affirmations. Cause Parkinson’s is very, very tricky. Very, very tricky. Sometimes, you know, the day the Parkinson’s wins, but most of the time I call the shots and I kill that, you know what? I may have Parkinson’s in Parkinson’s does not have me. 

So, you know, I talk to myself, and I say, you know, I’m strong, I’m healthy, I’m disease-free. I can do anything I want to do. And I say over and over and over and over again to myself to become, it becomes a way of me taking back what has been given to my body and not, not triumph over me. Parkinson’s will never triumph over his body. Never. I won’t let it. And I’ll fight, fight, fight now, keep fighting. Cause I know that’s the way to has done. It reinvigorated me to want to fight and help others fight. 

Gabriella Dimotsantos: 

Yeah. Thank you. 

Kermit Smith: 

I’m a winner. We’re all winners. As long as we keep getting up in the morning, we’re a winner. Put positive affirmation that our, like we’re all winners. 

Gabriella Dimotsantos: 

Oh, that is so wonderful. Thank you so much. Richard, how about you? Just a couple of words, takeaway on what this experience has meant for you. 

Richard Huckabee: 

Well, this experience has just really been fantastic for me, all inspiring. And when I tell my story, I think it inspires others to get involved and to keep moving because as the title states PD movers, we keep moving. Movement is medicine. And I just like everyone to know that there’s hope. You can thrive with Parkinson’s disease. You can still do things. It’s not a death sentence as long as you keep moving, as long as you keep fighting. One of my daily mantras is every day I fight and all of us we’re fighting something. I’m fighting Parkinson’s Disease, but others may be fighting high blood pressure, diabetes, or something else, but if we keep fighting, we will have victory. And just telling my story through PD Movers has been all inspiring and I’m just grateful to be able to do so. 

Gabriella Dimotsantos: 

Oh, thank you so much. And we do have a few minutes to jump into q and a, so I’ll go ahead and let Sara take the stage for that. 

Sara Linn: 

Yeah, thank you so much. Thank you both. Thank you all three of you for joining us today and sharing these really impactful stories and important messages. We’re, we’re so grateful to have the opportunity to share your inspiring stories and how you all live well with Parkinson’s today. So, thank you so much. As we kind of start to collect some questions as a reminder, please feel free to add any questions you have for our panelists in the chat. Gabby’s bringing up the PD movers slide that has a QR code on it for you to scan with your mobile devices so you can download the PD movers storybook on your devices and get to hear more amazing, inspiring stories from others as we hear, you know, the ripple effect of sharing this with others is, is so important and why it’s spread. So, as we kind of let you all take some minutes to collect your thoughts and ask some questions, we’ve seen a lot of really just grateful comments come through around, you know, what wonderful, inspiring stories. Thank you so much for sharing with- 

Gabriella Dimotsantos: 

Oh, it looks like Sara Linn froze that there, I think she’s been having some challenges with her computer of course, in this moment, unfortunately. But just to build on that, yes, we would love to see any questions come through the chat. I’m so grateful for everyone’s engagement. And we do have one question that we can start off that was from our last webinar that we carried into this one. So, for anyone who it feels appropriate to respond there was a question, storytelling, and asking if the book addresses, does address the African American and Latino population to know if Indians are included. 

Hiral Shah: 

So, I might be of Indian decent, I might take that one on. Although, you know, I’ve been hearing and I also identify as a person of color, I think that more important than the social constructs are likely our shared experiences and what we have in common. But I think that in terms of addressing the Indian community, I can speak from personal experience that, as I’ve shared this with my family, and I think that the stories resonate with them. Certainly, there are differences, you know, in religion or culture, but I think that the stories do resonate. That being said, my parents are actually in India. My father’s a physician and he has been sharing the book with his colleagues. And it’s interesting how each community reacts in a really interesting way and his medical school classmates are so excited to see this book. 

I think it’s so unique and its storytelling that it captures the attention of anyone. And they all are asking, when are we going to do one for the Indian community? They’ve already translated into Gujarati, so we’re looking to figure out, you know, how are we going to share that with others, but also how can we develop a similar tool that addresses any of the specific concerns that may be unique to the Indian community. You know, and I think that just speaks to when putting together a resource like this. I think we had a period of where we got to know one another as a group. And I think we were all mindful of what the key messages were that we wanted to make sure we highlighted as we created this resource. And I think the key messages for me if I’m not mistaken, and, and Mr. Smith and, and Huckabee can correct me if I’m wrong, but the importance of representation; the importance of faith, the importance of family, the importance of this being a positive and optimistic resource that focuses on recovery, including exercise and other things that you can do and be empowered to take care of yourself.  

So, I think that that is just so important as we try to help other communities develop resources similar to this. So, you know, I think it’s always important to include the voice of the community from the outset, which is why we were sure to make sure that the publisher, the artist, the videographer, that everyone identified themselves as African-American, Black, Brown, so that we created, had that shared experience. So, there was that immediate sense of trust and comfort as people shared very vulnerable experiences for themselves and even sometimes shared stories that they had never shared outside of this group. I know that Mr. Smith, that was true for you. So, I’ll let the others, you know, jump in. 

Gabriella Dimotsantos: 

Yeah. Thank you. 

Kermit Smith: 

You want me to go? 

Gabriella Dimotsantos: 

You don’t have to have a response if it doesn’t, if you don’t have one, that’s okay. Ok. 

Hiral Shah: 

Mr. Smith has something he wanted to say. Great. 

Kermit Smith: 

No, I think Doctor Shah hit it on the head. When I think about it, I think that is very important that we get this out to the community. African American community is very, very, they don’t like going to the doctor if you mention the word psychiatrist, that’s a no-no. When I, when I was having problems with my voice, for example, when I was having problems with my voice, they were, I was speaking like this. So, Dr. Sharp, she recommended that goes to LSBT training, I think it stands for Lou Silverman Boy Strength. And I learned how to raise my voice to learn how to speak. So, whatever’s going on in your life, we have things that are there for you. If you just open up and know what’s going on, that will help you, you know, so I’m very, very happy to be part of this. And again, I want to thank you all for the opportunity so I can raise my voice and let people know that there’s hope out there. There are people out here that want to help you, but you got to first want to help yourself. And if you want to help yourself, people will come to your rescue. That’s the way God works. 

You let people know what’s going on. God, God let’s argued on door to God. The universe. The universe will give you what you want, but you got to tell the universe what’s going on with you. 

Hiral Shah: 

And if I could just jump in and add on to what Mr. Smith said about, I think he’s not alone and having this experience of being reluctant to seek psychiatric treatment. I think unfortunately mental health and mental health treatment is stigmatized across many cultures including the Indian culture. I know that in my family, mental health is something that is brushed under the rug. We don’t discuss it. It’s seen as a weakness. It’s seen as something that you should just be able to overcome with yoga or meditation or which are wonderful modalities and can be very effective. But I just think it’s so critically that we work to normalize this in our community, including Parkinson’s disease. So that having people like Mr. Smith and Mr. Huckabee who are willing to share their experience, willing to speak openly about being a gambler’s anonymous or being in treatment with a psychiatrist is so empowering for others who look to them and see a strong black man who doesn’t appear weak, doesn’t appear in any way to be someone that what you would think would be stigmatized or have any vulnerability or insecurity. 

And I think that when we share our vulnerability with others, it really opens the door to allow them to be vulnerable and to recognize that these are issues that are a part of life and part of humanity and the fabric of our communities, and that we need to talk about them and connect people to the appropriate resources because there’s no reason for Mr. Huckabee to have suffered for so many years. And if him sharing his story prevents even one other person from suffering alone we will feel that we’ve really achieved something wonderful. And I just noticed Dr. Grutman has a question in the chat, if you don’t mind, I’ll just take it on about applying this model to other diagnoses with negative connotations that isolate people and discourage pursuit of treatment. I think he absolutely. I think that this model of using first person storytelling coupled with educational material where the book is developed or the tool is developed, rather with the community in involved at every step to make sure that, you know, we as doctors and me, when I say we are saying the medical enterprise may be very well-meaning and think that the educational resources there are patient-centered or culturally sensitive. 

But I think unless you have a person with that disorder in the room, you can’t be so confident. So, I think it’s a really wonderful model to destigmatize and normalize as well as validate and give credibility to the individual. So, I think by printing these stories in the book, I think it also gives so much credibility to the experiences of these individuals. And I think that’s huge for the community at large, who feels like they can identify with that. But I want to be sure, I let Dr I mean, excuse me, Mr. Huckabee speak too. Cause I saw he came off of mute. 

Richard Huckabee: 

I know we’re running out of time. So, I just want to say one, one of my things I would like people to take away is to become an advocate for your medical health. Because if you go to the doctor and they can’t find what’s going on with you, just request to see a neurologist yourself because you got to become your own advocate. If you find that they, they’re prescribing the wrong medications for you, talk to your doctor, let them know if, if weird behaviors start happening, you got to talk and speak up so that you don’t continue with long. Like for example, they prescribe four Cobra Carbidopa for me personally a day. Then after two years, they jumped up to five. During that time, I was doing an exercise study. I went into the exercise study with that fifth pill in me and the study people was telling me, you look lethargic, what’s going on? 

I said, well, my doctor gave me an extra pill and said, let me get used to it. They told me, you need to not take that pill. Let’s talk to your doctor. Let’s get you off that pill. You, you’re exercising. You don’t need that extra dose. So, he took me off. Then he told me, if I’m going to exercise and let that be part of my medicine, then work hard at it, sweat. So, I started to work hard and sweat. So pretty soon I went from four carbidopa/levodopa a day to three. And this was in 2019. And I’m still at three because exercise is one of my medications. So become your own advocate and know that this is not a death sentence. That there is hope that you could do what you set your mind to do even though you have Parkinson’s disease. Because as Carmen said, you may have Parkinson’s disease, but Parkinson’s disease does not have you. Thank you. 

Gabriella Dimotsantos: 

Thank you so much. What a powerful message. And Mr. Smith, I want to give you some space if you have any, anything you’d like to say before we do some closing up and some housekeeping here at the end. 

Kermit Smith: 

I guess the thing I like to say, again, I want to thank you for the platform for being to tell my story. And I hope and I pray, you know, I don’t, I told you all before what’s going, what, what’s happening here is it’s blessed by God. It can’t fail. This, what we’re doing here cannot fail. It’s going to succeed, it’s going to grow, it’s going to get bigger. And we are all blessed by us coming the contract with each other. This makes us family, my family just got larger this webinar. I appreciate you all. There’s anything I can ever do for any of you. Just let me know. I’ll be good. 

Gabriella Dimotsantos: 

Thank you so much and thank you again, Mr. Smith. Mr. Richard Huckabee. Thank you Dr. Shah so much for your time in advance of this webinar and today in sharing your story, sharing your voices, and such important information that is being shared with the community. And as we’re wrapping up our session for today, I would just like to share a couple of reminders here. We have one more session in this series. So next we will be meeting on March 16th same time, 11 o’clock Mountain standard time, or one o’clock eastern time to talk about the role of faith-based leaders in health promotion and outreach in the black and African American community. In response to this webinar, everyone who registered and attended will be receiving a recording and some additional materials in their inbox within the next week. And thank you again, and we hope to see everyone here next month. 

The Role of Faith-Based Leaders in Health Promotion and Outreach in the Black and African American Community

You can download a pdf of the transcript here.

The Role of Faith-Based Leaders in Health Promotion and Outreach in the Black and African American Community  

Note: This is not a flawless, word-for-word, grammatically-correct transcription, but it’s close. 

Kayla Ferguson (Grants Program Manager, Davis Phinney Foundation) 

Thanks again for joining. This is the third and final webinar in our PD Movers Raising Awareness and Hope in the Black and African American Parkinson’s Community Series. And today’s webinar is called The Role of Faith-Based Leaders in Health Promotion and Outreach in the Black and African American Community. My name is Kayla Ferguson and I’m the grant manager at the Davis Spinney Foundation. And today I’m joined by a handful of great panelists as well as Dr. Hiral Shah, who’s an assistant professor of neurology at Columbia University Medical Center in the division of Multi-Specialty Neurology. And she’ll be leading the discussion with our panel of experts. And in just a moment, I’m going to let Dr. Shah talk about this amazing resource as well as introduce the series that we’ve done today and herself in a little bit more detail. But before that, I’m just going to go through a quick few housekeeping items that you’re likely already aware of, but it never hurts to have a refresher. 

For this webinar, it’s best to be in the gallery view, that way you can see all of the speakers and the facilitator as we’re moving around the room. You might have also noticed that we have the closed captioning on, and you can click that at the bottom of the screen and hide that if you don’t want to see these captions throughout the conversation. Also, the chat. As always, we at most Zoom rooms love people to use the chat, and so do we. So, feel free to let us know where you’re logging in from. You’re your name of course. And then you can choose who’s seeing your chat with the blue box at the bottom. You can choose everyone, or panelists or individual people feel free to put whatever questions and answers or questions in the chat, and we’ll do our best to answer them as we get going towards the end of this webinar as well. 

Claudia, on our team who I don’t think is on screen right now, she’s going to be keeping track of this chat and we might not get to all of the questions that people ask, but we’ll do our best to follow up with any that we don’t address in the follow up for this webinar. Which brings me to my last point is that this is being recorded. And this will be sent to your inbox to watch the replay or send along to anyone who might also want to watch it in about a week after this webinar wraps up. And I guess my last note is that this is a webinar so you cannot be seen or heard, and the only way for us to hear from you is through the chat. So, I think that’s it. I’m going to pass it over now to Dr. Shah. I’d love for you to introduce yourself in a little bit more detail and then give us some context for this amazing series and these amazing panelists before I do some bigger introductions of everyone who’s here. 

Hiral Shah, MD (Assistant Professor of Neurology, Columbia University Medical Center): 

Thanks, Kayla. So, I’m Hiral Shah. I’m a neurologist and movement disorder specialist and the medical director of the Parkinson’s Foundation Center of Excellence at Columbia University. As Kayla said I’ve been one of the leaders in developing the PD movers and wanted to thank Davis Phinney for really giving us the space and time to share this amazing resource and many of its applications. Just to kind of give you all a little bit of background, if you hadn’t joined us before, a reminder of what the PD movers is. So, it is a book and a compilation of narratives of 10 remarkable individuals who are living with Parkinson’s Disease and their care partners who identify as black or African American. And this compilation of narratives is told in the first person and accompanied by vibrant illustrations underscoring the importance of representation. And we’ve traced these individuals and care partners in their journey of Parkinson’s disease, when their symptoms began, how they were diagnosed, and how they’re coping and thriving with this disease, including some of the treatment approaches that they’re AP applying throughout. 

This is the thread of the importance of faith and as well as the empowering messages so that people that are living with this disease can have the best quality of life and access to resources that they deserve. By way of a little bit of background, as Kayla said, this is the third in a series of webinars. So, the first was really just talking about PD movers as a tool for building trust awareness as well as empowerment of Parkinson’s disease in the African American and black community. During this first webinar, we discussed the importance of gaining trust in the community and some of the work that I did with Miss Anita Parker, who’s on as a panelist on today’s webinar to build trust in the community. As we prepared for this book, it took several years of building trust before we came to the point where the community felt open and welcoming, and comfortable so that we could share the knowledge and information we wanted. 

We talked about the book as not only a tool, and an educational resource, but as a model of how to engage with otherwise under-engaged communities that individuals and organizations could then utilize to tackle problems in other areas of health that face healthcare disparities. We spoke about the importance of including the community from the beginning, from conceptualization through implementation, and our use of the community-based participatory research model. And finally, we spoke to the impact of the book, how it was sparking conversations, creating connections, and opening doors, and the fact that it was so impactful in this way and so highly acceptable because of the approach that we took including an uplifting the voice of the individual and care partner. So, the second webinar was great as well. In this, we focused on the power of the story. Richard Huckabee and Kermit Smith, two participants in the PD movers shared their narratives and how their life was changed when they were diagnosed with Parkinson’s disease. 

And the obstacles and opportunities that presented their moving words showed us the importance of maintaining hope and optimism and the role of faith in that journey. And the other conversation I wanted to highlight, which we weren’t able to get to in our second webinar, was a conversation with Randy Pearson, the illustrator of the book. He had a really moving discussion with myself and other members of the Davis Phinney team about why he chose to participate in this project and how it changed things for him. He himself was a caregiver during this journey, and I think that he was able to bring the narratives to life using these vibrant images and illustrations that almost are another character in this storybook of PD movers. So that brings us to the session today where we’re going to be talking about the role of faith leaders and faith-based organizations in building awareness and empowerment in the African American and black community. And I’m so thrilled that you’ll get to hear from our wonderful panelists today. So, I’ll let Kayla take it from here and introduce our team. 

Kayla Ferguson: 

Yeah, awesome. Thank you for that context. I think that’s really helpful to set the stage for the conversation going into today. And yeah, I’m just going to take a few minutes and let everyone know who’s on the screen. So, when they’re answering our questions, you have some context for their expertise and the work that they do. When I say your name, if you can maybe give a little wave. I know we have your name already on your screen, but feel free to wave so people know who I’m talking about. I’m not going in any particular order on the screen, so that’ll be helpful. So, Wendy Lewis, she is the Chief Executive Officer at the Parkinson Council. And since her tenure, the Parkinson Council has reinvested over five and a half million dollars into the greater Philadelphia region for research comprehensive care and quality of life initiatives. 

And she also is one of the Davis Phinney grant recipients for the Diversity PD initiative that you’ll likely hear more about today. In addition, there’s Fredericka Waugh and she is the faith be Faith-based liaison with the Parkinson Council and the Diversity PD initiative. She’s responsible for collaborations between the Parkinson Council and Faith-based Institutions. Fredericka retired in May 2020 from the Alzheimer’s Association, Delaware Valley chapter where she worked as the Associate Director of Diversity Inclusion. And currently, Fredericka is the program coordinator and lifestyle change coach for the CDC Diabetic Prevention Program, to prevent type two diabetes. That was a lot of words there, so hopefully I didn’t say it too fast because she has so much, so much experience. Next is Sandra Coplin. If you want to give a wave Sandra is 66 years old and she is living with Parkinson’s and one of the PD movers. And she also has stage three chronic kidney disease. She was diagnosed with Parkinson’s several years ago and is a proud member, as I said, of the PD movers and contributed to the PD mover’s book, which tells their stories. Sandra credits Faith in her family as the motivation that keeps her moving through any trial that she encounters. 

And next, we have Anita Parker. She is the director of community outreach at St. Luke AME church. She’s also a licensed social worker with over 30 years of experience working in multicultural communities with individuals and families. Additionally, she is a member of the PD movers as well and has served on several community boards that address health disparities and social justice issues that impact communities of color. And last but not least, we have Dr. Nia Mensah. She’s an associate professor at LIU, Brooklyn’s DPT program where she is an in-house fitness for but where she, where there is an in-house fitness for PD program. Her passion is working with adults and children with brain-based disorders, and she is a member of Mount Neboh Baptist Church where Dr. Johnny M. Green Jr. Is the senior pastor. Nia has worked with Teachers College and CUIMC health initiatives for people with Parkinson’s over the past three years as she is passionate about reducing health disparities in the black and brown communities locally and abroad. And then of course we also have Dr. S Shah, who is our kind of facilitator for today, and she did a great job introducing herself. So, I don’t think I need to redo that introduction. But with that very, very quick those very, very quick bios that we also have on our website, by the way, in case you want to reread them and know better. I will pass it over to Dr. Shah for, to get this conversation going. 

Hiral Shah: 

Great. And so just as Kayla pointed out, I think you know that we have a very diverse, experienced group of women, I should point out, that are directing this panel today. And I wanted to start as we always should with our person on the panel who’s living with Parkinson’s disease. I always think it’s so critical that the voice of the individuals that are dealing with this illness be put front and center. And so, Ms. Coplin, if you don’t mind sharing with the group, you know, how does faith play a role in your life? I know that we’ve discussed this extensively, but if you could share with this par the participants today and I think Ms. Coplin, you’re muted. 

Sandra Coplin (Member and Contributor, PD Movers): 

I’m so sorry about that, everyone. Yeah. So, I was raised by a single mother who raised my sister and I to be God-fearing to people. And I’ve carried that through my life. I was a member of the church in the Bronx. I live in Connecticut now, but I was a member of the church in the Bronx during all my school years. And after that, when I moved to Manhattan, I was attending St. Paul’s church. I’ve never been a member of any committees and so forth, but that strong background of faith and belief is what has started, from back in the early days and taken me through to this current time. It has led me to be strong, do some very difficult deaths of children and the family diagnosis of cancer with children and the family. 

So, when it came along from my diagnosis of Parkinson’s, it was shocking, but by no means anywhere near what some of the other tragedies have been. And again, this is where faith came in. It has never led me to question why something has happened or why is this seems to be a continual thing that we go through in life. I believe that the trials are just a part of my journey through life, and I handle it the best I can, and I’ve found that that has been helpful. And I don’t foresee where there could be anything more difficult than some of the things that I’ve dealt with involving children. So, I kind of feel that anything else I can deal with and that all comes from the strong faith and belief. And like I said, my worship doesn’t only come from an institution because since I’ve moved up here to Connecticut in 2020, I have not yet joined in the church. Partially because in 2020 the covid was the outbreak and so forth. But that didn’t bother me at all because my faith is within me and that has helped me through all of this with the Parkinson’s and gets me through each day. 

Hiral Shah: 

Absolutely. Thank you so much for sharing that. What I’m hearing is that faith for you has been a steadying force despite any obstacle that you might face. And I think we all know that we all face challenges and obstacles and there are factors in our life and family that serve to uplift us and give us that inner strength that we all need. And for you, it seems that faith has played a central role in that. Yeah. And I just want to underline that you state stated that you may have had a church in your life before, even though there may not be the institution of the church. Those values and principles remain important to you today. 

Sandra Coplin: 

Absolutely. 

Hiral Shah: 

And as a healthcare provider, it reminds me that when I’m considering an individual before me, that’s facing an obstacle and a challenge that it behooves me to inquire about whether someone has faith or spirituality in their life and whether that can be something that provides them strength. Because of course many people come to the doctor when they’re in a period of difficulty. But one thing that we know Ms. Parker, is that they don’t always come to the doctor for a source of support, but they may instead turn to their church, which is a place of information and trust within their community. So, I wonder if you could speak to that and in terms of the role faith plays in your life, but also faith plays to the Parkinson’s community. 

Anita Parker (Director of Community Outreach at St. Luke A.M.E. Church): 

Well, faith for me started way back when, when growing up and I was always in the church. And then my mother died when I was 10 and my aunt had to take five children in a home. She had no children. So again, that faith walk, knowing that family was there, the church, St. Luke AME church, the church I belonged to, still belong to was there to help us as children. And again, going to school, life changes. And again, like mentioned before, struggling sometimes with my faith because that happens. But all in all, going to school, getting my education, and giving back to the community, one thing I learned about faith is that if you receive, you have to walk and share. And that’s what, as a social worker I did, you know, all the different fields. So, people come at different levels. I may have met someone when I was in high school, but now they reconnected me in adulthood and they say, you have not changed. 

Not letting titles, anything. I’m just a humble servant. And once you realize you’re a servant, the community, the faith, you walk, and young kids see how you walk. Some people talk the talk, but don’t walk it So I’m always conscious of that. So, dealing with health and faith together, I realized I could make a big difference when I return. I was in Florida, I lived in Florida for a while and I did the one church, one child, I said whole different. And then Yankees coming down here telling us what to do, and that’s what I was called. But again, I was accepted. Trust in the faith community is very important. Trust in the church and outside of the church, the community have to see you and accept you. So, working with health issues, the main thing for me, because of my life experience with health. 

So, I was able to collaborate my faith and health together and work with people on different levels. Parkinson’s disease is another way of connecting with people. I saw it in my church, I saw it in my community. And one of the doctors who I work with in HIV and AIDS with children adolescence, he said, I got something. I want you to try to do this application, and get your church involved with this. I said, okay. I didn’t know what topic they were going to do, but when I got there, met Dr. Shah and Dr. Lynn, and I connected. It was a connection there, I guess kind of experience. We connected and we began and I began doing some research and sharing information that’s happening in my church and my community and what I saw. So that made me want to stick to what we had. 

One of the assistant ministers, Reverend Minsk, and we had a nurse, normal husband who’s passed on, died. And when the transition came about, I still felt that this is important. We came into the church, we had focus groups, people at you don’t know who you’re going to meet, you know, like I, they may not have, but they may know somebody. So again, the numbers kept increasing in our focus groups getting ready to talk about it, they women brought women from housing developments. It was an open and the pandemic came, we didn’t stop. And that’s the beauty of being seen in the community. You did not leave us. A lot of people said that when he had our first health fair, Nina did Mount Neboh. I just St Luke and people said, you are still here. And they came. And that’s important with Parkinson’s disease. We got to get the message out here in every venue. We are now doing work in the interfaith groups in five different barrels, talking to the faith leaders. We are being asked to come and through health fairs just come and talk and we are available. So let people know Parkinson disease is very important to us and our community. We must educate. 

And that’s one of the things I find that working with Parkinson disease and working with the community, educating them, it’s very important to making people know what we can do to help others and prevent Parkinson’s. You know, help people to live and thrive with it. Because that’s important too, because sometimes doctors may say, that’s it. 

Hiral Shah: 

That’s right. 

Anita Parker: 

So again, thank you. 

Hiral Shah: 

So, Ms. Parker, I think I just wanted to highlight some of the things that you shared in terms of when we work together. I still remember your words that you said that we can’t start in the community with Parkinson’s disease. They won’t come. We have to start with brain health. And I think that I was very recco cognizant that I needed to follow your lead when I was going into the community because you as a faith-based leader, have that trust of the community. And as you said, people will move, you have to model the behavior for the rest of the community. So, they see you coming out, they see that you’re not afraid to talk about this. They see that you’re open to learning. And that is a model for the community itself because you’re a trusted partner. And as you said, you know, we are also we’re sure to educate that that’s where we’ve started and educate and empower. And the more information we share, the more that the community wants to learn. So, I wanted to bring in some of our other experts that have expertise in the community. So maybe Wendy, if I could invite you to join the conversation in terms of how have you worked with faith-based organizations to promote Parkinson’s disease or health as the CEO of Parkinson’s Council.  

Wendy R. Lewis, MNPL (Chief Executive Officer, The Parkinson’s Council): 

Thank you so much, Dr. Shah. And thank you for the panelists on here sharing your, your expertise and your life experiences. So, the way that we’ve used, our way that we’ve partnered, let me just say it that way. With faith-based communities and understanding that being trusted members of a community, particularly communities of color we understood that in order to be able to share our information or be able to learn more about the community, it was important for us to actually reach across that particular part of the organization. That faith-based organization was incredibly important for us to be able to develop a relationship and develop trust even with the faith-based organizations because just because they’re sitting in a church, just because they’re sitting in the community doesn’t necessarily know mean that they’re going to automatically trust who you are either. 

So, it was actually helpful for us to be able to develop, develop those relationships with the congregants, with the leaders. And we’re so thankful that Puerto Rico Wall, who is a part of the one first faith-based community organization that we went to Salem, was so helpful that her minister, her pastor understood the importance of having a place at the table when we have these conversations about educating community members about a disease that goes often underdiagnosed or undiagnosed in the African American community. So, it was important for her to be at the table to be able to share what the experiences are for her congregants, what the level of understanding they may or may not have about a chronic disease that will impact, maybe impact some of their family members. So, our importance was to develop that relationship first within the leadership of the particular institution, the faith-based organization, and then to help them help to translate that information to their own folks. So, it’s not just about like, here’s to tell a bunch of information, can you send it to your congregant? It’s understanding for us as well to learn about what congregants may know or not know about a Parkinson’s. And then also what we can do to support them is all about empowering, engaging them in a level that empowers them about their own mental health. So, it was important for us to do that as a group. 

Hiral Shah: 

Yeah, that’s so important. As you said, it’s a collaboration and a partnership. It’s not about organizations or researchers or medical providers going into the community and giving them things or asking for things in return, but it’s really about uplifting the voice of the community and having a seat at the table. And I think that’s a perfect moment for Ms. Waugh. If you could speak to your experience with working with Wendy’s team as well as more broadly. Cause I know you’ve worked in the Alzheimer’s space as well in terms of faith-based organizations promoting health. 

Fredericka E. Waugh, MSW (Program Coordinator and Lifestyle Change Coach, PD Movers) 

Yes, thank you so much. It’s been a pleasure to work with Wendy and the Parkinson’s Council through my church, which is Salem Baptist Church of Abington. And I have a pastor that is open to being sure that the congregation is healthy and open to the information. So, he has allowed me and appointed me, so to speak, to speak for him and to also bring in the information. So, we’re still in the process of doing all of those things. And we are planning to do some type of workshop around brain health and just, you know, because it’s important that people understand where this is coming from. As you know, frequently when you ask, well do you know anyone with Parkinson’s? People say, no, then that’s because they don’t know what Parkinson’s is. So, we know we have to go back and do this education and to allow the congregation to understand. 

And for me, it was the same way with Alzheimer’s is a disease and oh, you have to, you know, people have to understand what it is. And so since there are so many neurological diseases we are going to focus on Parkinson’s disease, but we’re going to bring in some of the others so that people can understand and make the connection and you know, and then that will hopefully increase the numbers of people that will come in and talk with us and understand and have a, you know, an experience around what are these neurological diseases. And yes, they probably will then say, I do know people with Parkinson’s disease. So, the collaboration has been really good and continues to be really good. 

Hiral Shah: 

Yeah, that’s right. So, it sounds like there’s, there’s an importance not only of education, but also recognizing and aligning one’s priorities that, you know, what are the priorities of the congregation or organization in the community, which is of course health. And people are, I keep hearing they’re concerned about mobility, they’re concerned about falls, they’re concerned about their memory, and people may not be aware of Alzheimer’s disease or Parkinson’s disease, but once they come to know about it and learn about it, they’re hungry to learn more in a way that is approachable and impactful that they can understand how it affects their everyday life. So, Nia I’d love for you to jump in at this point and speak to some of your work that you’ve been doing at Mount Neboh and beyond in terms of the role of the faith-based organization and health promotion. 

Nia Mensah, PT, DPT, PCS (Assistant Director of Clinical Education, Long Island University Brooklyn’s Physical Therapy Program): 

Oh, well, thank you. It’s an honor to be here. I am more of a newcomer. I give honor to the leaders in the community that have been doing this for decades. And I will want to say this just out the black church has been the cornerstone of an African American community since the inception of African American communities in the United States of America. So, the black church has continued to bring leadership political leadership information the cornerstone of the black family. And so, it is no different today. I know it’s; it seems to be watered down with the climate of social media and all the things we see in negativity we see. But the black church is still the cornerstone, so it only makes sense that they’re leading the charge with healthcare and breaking down the walls of health disparities in the black and brown community. 

And so, like Ms. Waugh, my pastor is very passionate about educating the community. He started a coalition of pastors to impact to help educate black communities, not only in New York City, but in other cities in New York, in other states to help bring awareness to conditions like Parkinson’s and other brain-based disorders so that we can get early diagnosis. I think that’s the continual pro, the pro problem in our community. We are diagnosed late in many of these instances. Personally, my connection with working with the faith-based community how it got tied to me as a physical therapist was when I first got really saved and born again. After college, I really took to the mission field with a group of therapists PT students. And that was, it was then where I was connect. 

It was clear to me that my purpose was also not only to share the good news of Jesus Christ and his love, but also to share my knowledge as a therapist and the position that my family and God has placed me in to be upfront and honest about what is available to our community and so that we can break down these barriers. And so, the great commission is gone ye therefore right to baptize and teaching others and making disciples. But we don’t have to go across, overseas. We can do this right in our community. And I think the black church continues to do that with the sick and shut-in list with people that are not able to get out of their homes. And that’s the case with a lot of people with Parkinson’s. There is some, there’s, it’s come down, but there’s still a stigma about movement disorders or even postal stroke or something that is limiting movement where many people are not necessarily comfortable with people seeing, physically seeing that there’s a challenge going on. 

We’re very private people, you know, especially people that are not part of the community. So, I think that is part of the challenge when you’re working with movement disorders. And so, the black church continues to go out in the community. The black church continues to reach those people in their homes. And I think that’s maybe a good place to start as we continue to grow these efforts by reaching those individuals that can’t, that may not be able to make it out to church or to the health fairs so that we can have a globe more of an impact. 

Hiral Shah: 

Absolutely. And I think you speak to even the folks that maybe can’t get to their medical appointments, but the church is still committed to reaching them. So, it’s about reaching, engaging, and empowering. And I think that the church is so well positioned to do that and is doing that work. I mean, I know that I remember Wendy, we had in a previous conversation where I think that Covid brought this to light, given that we saw that our faith-based organizations were doing this work. They were already out there, they were already engaging and reaching the community. And me, I want to just highlight something you said about stigma. I think that often in many communities, it’s the norm to stay quiet about conditions like Parkinson’s disease, Parkinson’s conditions where many people may have different abilities, not so many disabilities. And it’s a prideful community, much like my community of the Indian community. So, I think I can definitely relate to that. And I think that engaging and empowering is one way to address that stigma. But Wendy, please add to that conversation. I saw you came off mute and I was just trying to wrap up my thought.  

Wendy Lewis: 

No, I love that. And I appreciate that. I think that for us as an organization, we typically would like to think of ourselves as enter the intergenerational in a lot of ways, interface collaborative and in a sense that we tried to make sure that other organizations that were working in space also have a voice and a place at the table. And it’s, and it, and it can be a very difficult conversation when everybody is, has their own needs and they have their own wants and they have their own activities, I think. But once we put the clients, the community, the family at the center of that work, it becomes a lot easier for us to work together because we’re building towards the same mission, which is to improve quality of life, to create a pathway for communities of color, black, brown Asian communities to access healthcare high-quality healthcare, like those with more privilege and more resources available to them. 

So, once we are all on the same page, bringing in people from different faiths, different backgrounds, and different beliefs are a very easy thing to do once we set aside our own needs to be front and center of these projects. So, I’m so grateful to have all the folks on the screen doing that and being a voice and being an advocate. Cause that’s what we think that the church actually allows us to do a little bit more of. And as, as you said, that the, been the cornerstone of this work for hundreds of years since we’ve stepped foot on this on the continent, and it’s a way for us to be able to get not just the information, the news, the resources, but it also is a, it’s a word of a lot of word of mouth of who’s doing well this way. 

And the goal for this group is to make it through maybe a little bit more public so that people aren’t afraid to speak up when they need that help and care and support. So yeah, I think definitely we don’t want to ensure, we want to ensure that everyone has a place to the table has a voice and that we also actually believe that having organizations, faith-based other organizations have the internal structures available to make sure that those resources get, get into the right hand. So, the infrastructure has to be in place as well. Just throwing out a bunch of information and not having someone who is willing to filter and promote and just or distribute is as important as anything else. 

Hiral Shah: 

And I think that so much of what you just described is mirrored in the PD mover’s book and approach. So, this is exactly why it’s been successful, is because we got out of the way, and we let the people and care partners who are living with this condition take front and center. We allowed the book to uplift their voices and blend validity and credibility to their experience. And we’ve created a tool that has legs, it moves on its own, we can now share it. And it’s allowing this type of conversation, which I think is not so common about the role of the church or the role of faith-based organizations, but it’s allowing for that conversation to happen. And not only that conversation, but so many more because we’ve put the experience of the person at the center rather than thinking about how do we educate the community. 

So, I just put that as another plug for others that are listening to consider always including the patient’s voice and the care partner’s voice and allowing that to take the lead to dictate priorities, themes, concepts that are critical and important to the community member and putting our own ego and priorities aside. And then once that’s done, the work does, you know, happens itself. And we’ve used a similar approach that’s mirrored in the church with giving testimony. This is exactly where the inspiration for even the packaging or concept of the book came from. Because we sat in the church and at Brain Health talks people and often would stand up and give testimony spontaneously. And it was such a beautiful expression of hope, optimism, and the way that people in the community challenges when they face them. So that’s where that came from, from the church. 

And so, it may not be the same in all communities, but that’s why you have to go into the community, listen, listen, listen first, and act next. And so, we then have used word of mouth, just as Wendy pointed out, that’s the best way that this message gets out. And when people hear about the resource from a trusted individual, they pass it on. And so that’s allowed us to not have to do the hard work of spreading the word. I went to the Unity walk this weekend and was walking around to the various boots asking or just mentioning, if you haven’t heard of the book, I’d like to share it with you. Oh, we’ve heard of it. We already know it. We have it. We have it, Anna. So, it’s just so wonderful. So, I wanted to now invite the whole panel now that we have this wonderful start to a conversation for the next few minutes. If we could speak to, you know, how can faith-based in institutions, communities continue to serve as a space that’s a safe space that creates community and that creates connection for those that are living with Parkinson’s. So, I’ll open it up to anyone that would like to jump in. Maybe Ms. Parker, if you don’t mind, I can pick on you. 

Anita Parker: 

I think most important that they’re having access to get into the church and every church as far as the ramp, whatever they need, the access is there for people living with Parkinson needs to be there as a challenge in some churches, but it can be done with support. I mean, especially in different communities, they have organizations will help the church set up that system where they could put a ramp in, could have access and also lower levels where they could have a fellowship or not walk up the steps. There are some, I have talented. So again, those are the things I know, and I’ve observed that made a difference. Sick and shuttled less visit phone calls even every day, a lift of encouragement, a word I, that’s something that I do. And it’s so important. You can’t imagine how it just waking up and seeing someone’s thought about me. 

Never send me a text or a phone call ministry or presence. That’s what I would like to see more of. Even with now with food insecurity and the children, making sure it’s not just for parents. Because sometimes parents lock that cabinet. So we as a church have to go out there and be out in front of that on our corner with our little goodies for the snacks with the parents because they can’t afford to buy the snacks because of the economics of this country right now. Those are the things make a difference. That’s what I would love to see more of in giving them information. Why are we passing out the snacks? Here’s the PD boo’s book. Read it, share it. And we have a multicultural community that is waiting for it in Spanish and other languages. So again, but the children will read to their parents, to the grandmother, to the cousin. So that’s what we foster. They know that we are there for them. And then if more churches will just do this, it’s not going to hurt. They paid light and gas bill anyway. They might as well do it. That’s the way I see it. <Laugh>, that’s what I’d like to see more of. Outreach. Okay. Thank you. 

Hiral Shah: 

That’s right, Ms. Parker. So, I think you’re saying that, you know, the church often bears witness to these challenges that individuals are going through, and I think that even as healthcare providers, organizations, individuals, and families, we need to recognize the importance of that being that steadfast source of, of faith and bearing witness to some of these challenges is also important. But that these types of resources might get into the hands of people that need them, not just from the adults and older adults in our communities, but the children. And so, we have to think about the community and as a family or as families and what their needs are, not as individuals. Ms. Coplin, I wanted to invite you to comment again on what, what are your, some of your thoughts as a person who is living with Parkinson’s? 

Sandra Coplin: 

Well, I’d like to comment and include in that answer my grandchildren. I have two grandchildren seven and 10 years old. And it’s important that they know too, and that there’s not a fear. Like, so if they see me with the tremor or if they see me walking slowly, you know, they’re very outspoken. They will ask a question and say, grandma, why are you moving so slow today? But it’s very important to get them informed as well and accurately informed through media. Like you had sent me some books that you recommended that spoke to children about Parkinson’s because there should not be a fear when they see some of the side effects maybe or witnessed some of the side effects. My grandchildren have not seen much, but you know, as time goes on, they probably will. 

And I like knowing that they are informed at an early age where absolutely Cynthia, and they can communicate that they were very, they were included in the book. Their little pictures were part of the PD movies book, and they were just so happy to see themselves. But in terms of, they were only interested in my story, unfortunately, but it’s a way it was done so well. And Randy’s illustrations, the book was just so, the color and everything just drew your eye to it, that they immediately picked it up and that that definitely is something that we can think of and should be thinking of. But our generations down the road, hopefully by the time they’re much older, you know, the situation will be better medically where people are able to be helped a lot more. 

Hiral Shah: 

But educational material, you never know who it will reach, right? 

Sandra Coplin: 

And unfortunately, they don’t have the strong faith background that I have. You know, the generations, unfortunately, some of us I raised my son in the church and so forth, but they’re not raising their children per se in the church. Which again, as I said, I don’t believe that that’s absolutely necessary. But I do believe that the practice then has to be in the home. And so, I find myself, because I watch them in the afternoons when they come from school, I just bought, offered a pearl of grandmotherly wisdom to talk about certain things with them. And I just feel that when it comes to faith that they’re told that to have that passed down from one generation to another. And if that’s being skipped by the parents, then I look forward to doing it myself. 

Hiral Shah: 

Thank you for sharing that. Ms. Waugh, could you maybe, or Nia, I’m sorry. I saw Nia came off of Mute. 

Nia Mensah: 

That I just wanted to piggyback on Ms. Coplin. Specifically, you asked the question about, you know, what can we continue to do? Well, conversations like this is, I mean, just so important. So, continuing to have the conversation, like not just stopping would be my first thought. And then the second thought, because I remember the brainstorming conversation when PD Mover’s book was birth, and it was a conversation about how we can engage. Ms. Parker, I believe, is on that conversation. So, was about how can we engage our community and how can we share? And we talked about culturally African American, we are storytellers and Ms. Copeland, that’s what you’re doing, you’re sharing with your grandparent grandchildren and how fortunate are they to have access to you directly to get the glean the wisdom that you have on a regular basis. And I say that to say it was that conversation that I was fortunate to be a part of because of my ancestors and what they went through to allow me to be in a position, to be a PhD candidate at Teachers College to share about my heritage and what the African American community looks to and what will help build trust. 

Not just coming to do something and then leaving, but to build a relationship. And I think that is what has happened. And I’m so excited to see how vision has manifested into this beautiful illustration of storytelling and the conversations happening. And I think representation matters. That was just going to be my biggest point. Having people at the table from every level, people with Parkinson’s, African Americans, medical providers, African American researchers, African American aids, African American church workers, and having the relationships at every level because that is going to be what will be carried on down from generation to generation so that the playing field is even. And then we can break down some of these barriers. So that was what I wanted to piggyback off of Ms. Coplin, what she’s doing, and how she’s sharing wisdom. It is that wisdom that will be continued to be passed down and that is the representation that we need as we continue with these conversations. 

Hiral Shah: 

Thank you, Nia. So well said. Ms. Waugh, can, I’d like to invite you back into the conversation from your perspective. 

Fredericka E. Waugh: 

Well, I think what Nia just said is very true. And what all of the people on the panel have said, we have to bring in the community. So therefore, they have to trust us as an organization, as a church, and as a congregation and we have to be able to have the resources, we have to know who is in the medical community and the information community when it comes to Parkinson’s or any of the other neurological diseases. So, if they’re going to, in order for them to look toward their faith in through their church, they need to know what is there. They need to know that they can trust the fact that we have the information. We may not be the experts in the field. We may not all be the doctors and the movement specialists, but we can hook them into that. 

We can share that information with them. And so that is what, you know, we are trying to do at, at my church and the churches that I collaborate with through the Parkinson’s Council. Yes, it’s about allowing people in the community, the faith-based community, as well as just the physical community to know that here’s a place where you can get the information, here’s where you can get some of the answers. And if we don’t know every little thing, we do know whom you can call, we can refer you to a doctor, refer you to Jefferson Hospital and the social worker there. And so, we, those are the kinds of things that churches need to know. We do, like Mrs. Parker, were saying we have the food banks, and we have all these other things. In fact, one of the ideas is to put maybe the PD mover’s book as we are passing out food, you know, on Thursday afternoons. 

Just give them a book at that time because we have to begin to talk with them and have something that they can hold in their hand and read. Our pastor is very much in love with all of the children at our church, so this book is going to be wonderful. And if he passes it out to them, they will read it and they will begin to learn. So those are the things that I will have a discussion with Wendy and with Marshall Mitchell about, is how can we get this into the hands of the people that are going to help us understand what is Parkinson’s disease the same way that we worked on what is Alzheimer’s disease, you know, and I know it can be done, but we have to keep working. It’s not easy work. Wendy knows it’s not easy work.  

Ms. Parker knows it’s not easy work, but I’m willing to do it. And I know everyone here is willing to do it, and you just have to keep, keep doing it. Little, little pieces at a time. But I think when it comes from the church, and especially when you have a pastor like we have who is very inspiring, who is out in the community, you know, like the pastor at Mount Neboh, they’re out in the community, all of the C communities, he’s here in our suburban community and he lives in Philadelphia. He’s with the Philadelphia community. And so those are the things you, you need. And when you have someone like that, it can be difficult to catch up with them to have them work in these, these areas with you. And that’s why he appointed all, all of us to do the work. However, we know that sometimes he’s going to have to step out. We need to see his face. And so that’s the other thing that Wendy and I work on is getting him out. And with the other church that we work with right now, we’re getting ready to do a program that’s Sunday with Enon, and Enon is one of the largest churches in Philadelphia. So, you know, we, you, you have to keep pushing little at a time. It’s not always the way you want it to be, but every little bit, every little step helps. 

Hiral Shah: 

Absolutely. you said that all so beautifully. I was trying to mentally take notes, but I think you touched on and almost summarized the conversation that we had, the importance of trust, the importance of education and empowerment, the importance of having a seat at the table, the importance of communication and being present and consistent. And with that in mind, you know, on May the sixth Nia, we have our fair coming up at Mount Neboh Church where we’ll be having conversations about cognition, brain health balance, we’ll have yoga demonstrations, hopefully some music. And then May 20th, we have the health fair at St. Luke, a m e church in partnership with St. John’s. And we’re so excited for those events to continue to spread this message because we know the church is a place where people come through trusted information and when they’ll, when they’re feeling vulnerable. 

At the end of the month, we’ll be at, or excuse me, not the end of the month, but at the beginning of next month, we’ll be having a tabling event at the event for Michael J. Fox, PD, and IQ in Delaware. And thank you to Wendy for reminding us of the importance of that event. So, we can bring the books there. And in the summer, we’ll be at World Parkinson Congress in Barcelona. So, you know, we are going to continue to do this work with PD movers and we’d invite anyone to join us or reach out to us to collaborate and partner. I do want to, I know we only have five minutes left with this really rich conversation, but in the event that there’s questions from the pa participants that we wanted to get through, Kayla, did you want to maybe bring up one of the questions and we could see if we could squeeze in a few more nuggets of wisdom from our panelists? 

Kayla Ferguson: 

Sure. It’s I know, I feel like we could keep talking for such a long time and there actually was a question we wanted to close out with, and six minutes is not enough time to do this question justice, but I guess it, hopefully, it can maybe leave people with some action items because I do know one of the audiences for this webinar and this webinar series is people who recognize the need to outreach to these communities, but maybe haven’t necessarily figured out how, and they might be asking, oh wow, faith-based communities are such fertile soil for education and for the community. How do I reach out? Because I’m also hearing in this webinar, so much of it is relationship-based. You know, you all have done so much relationship building over decades, even to kind of like build this network within these faith-based communities. So, I don’t know if there’s an easy answer to this question, but for people who might be sitting there saying, this sounds great, I would love to do this. How do I get started? What would be a suggestion of how to take some of those first steps in building those relationships or really kind of cultivating that network, if you will? Which again, hopefully I’ve given us this much time for that question.  

Hiral Shah: 

Parker, I hear, do you want to go ahead, Ms. Parker? 

Anita Parker: 

Yes. Yes. One of the ways it’s person-centered. I have to say that because if you go into that, hear the message and you hear what the people, the different things they’re doing and feel, stay after. And if they have a fellowship moment and introduce yourself, introduce yourself, come back again, what can I do to help and take baby steps? But it works. Coming back to New York, when I came back, it was baby steps going back into my church and I went in, they had a ministry going. I came in, I listened, and I, you know, they said, welcome home, but I’m here to work, not just to come home. And people in the community can make a difference by just going into a faith community or if you are in a faith community, joining one of the ministries listening to what they go do, what they have, do, serving whatever it takes, doing something holiday, come up, help with the feeding of the people, anything back through the Sunday school, books, folders, anything, anything you could do to begin to do baby steps to do, make a difference in regards to working and educating people about Parkinson’s Disease and other health issues that impact your community. Thank you. 

Hiral Shah: 

And I’ll just say from my point of view that, you know, it’s better to give than to receive. So, start by just listening, listening, listening. You’ll learn a lot along the way. While you listen, you may be provoked or feel the need to say something but resist that urge and just keep listening for a long time. And, you know, for instance, for, sorry, my but one thing I would say is also read the PD mover’s book, share it, and see what happens. And I think you’ll see the magic in taking this type of approach. 

Nia Mensah: 

And I was just going to add, God looks at the heart. Don’t worry about, you know, anything from your past, what you look like. Your, the church is a great place to start, but it doesn’t have to be the church. It can be a community center, it can be a senior center ho a senior home, you know, and just, you know, just remember that it’s not about the outside, it’s about what you feel in your heart and let that lead you. 

Fredericka E. Waugh: 

Yes. I want to just add that our senior center has been renovated and so they’ll be opening a full-time in a few weeks. And so, I plan to, I am a member and I plan to be there and just taken those baby steps that Ms. Parker just mentioned and start talking it up. Because that’s, you know, one of the pubs they have, you know, about a hundred or more members and they’re not, you know, some, most of them are from the church, but not all of them are. So it is that is a place where I know I can, you know, stick my nose in and open my mouth and start to do this work there. 

Hiral Shah: 

I wanted to take, I see the time is two o’clock, and I also just wanted to un bath behalf of the PD movers and our whole team and all of the panelists that I’ve gotten to know over the last few months and weeks. Thank you all for your time and sharing with us. And thank you for giving the time and space to share this work about the PD movers. You know, I feel that I found the work that I’ve been meant to do, and I can’t tell you how empowering it is to be able to be authentic and spread this information and knowledge with others. And I hope that others have found this series as moving as I have. 

Wendy Lewis: 

Thank you, Dr. Shah. Thanks, Davis Phinney, for this and the lending space for us to be able to share this information. Voices heard. So, thank you for including us, I appreciate it. 

An Interview with PD Movers Illustrator Randell Pearson

You can download a pdf of the transcript here.

A Conversation with PD Movers Illustrator Randell Pearson

Note: This is not a flawless, word-for-word, grammatically-correct transcript, but it’s close.

Jackie Hanson (Program Manager- Audio and Visual Producer, Davis Phinney Foundation):

In 2021, PD movers invited a group of black and African-American individuals with Parkinson’s and their care partners to develop an educational guide for Parkinson’s, designed specifically for the black and African-American community. This group of movers includes doctors, researchers, and teachers from Columbia University, Irving Medical Center, and Teachers College Columbia University. What came from those initial gatherings is a beautiful storybook filled with narratives of African American and Black individuals and care partners who are living and thriving with Parkinson’s. In the following interview, you will get to meet the illustrator of the book, why he joined this project, and the importance of the illustrations on the impact of the book.

Gabriella Dimotsantos (Community Engagement Manager, Davis Phinney Foundation):

Hello. Thank you so much for joining us as a wonderfully supplementary piece to the PD Movers webinar series. We’re so fortunate to have you both on screen here. So, we’re going to just have a brief chat about a piece of the PD mover’s work that we didn’t get the chance to talk about explicitly during the webinar series. And that is the illustration and the creative side of this work and the powerful story that’s told by this side that’s so creative and wonderfully illustrated. So, my name’s Gabby and I’m our Community Engagement Manager here at the Davis Phinney Foundation. And Dr. Shah, I’ll let you go ahead and introduce yourself as well.

Hiral Shah (Assistant Professor of Neurology, Columbia University Medical Center):

Hi, my name is Hiral Shah. I’m a neurologist and movement disorder specialist at Columbia University.

Randell Pearson (Illustrator, PD Movers):

I’m Randell Pearson. I am an independent graphic designer and illustrator. I have been working as a creative since 1974, probably before many of you were even born. So, I predate the Mac computer. I come from the dinosaur age where we did everything by hand. But I’ve learned to use technology and work with the technology over the years and it’s been fascinating and then, the blessing of my life being a creative

Gabriella Dimotsantos:

Oh, thank you. What a like, beautiful journey to be on, to be a part of this technological shift with graphic design.

Randell Pearson:

That’s wonderful. Yeah. I actually fought against it in the mid-eighties when they brought the first Mac into the studio and I said, I don’t want to use that. And I said, you have to use it or you going to get left behind. That’s how I learned.

Gabriella Dimotsantos:

And do you feel like that was beneficial to learn? Oh, absolutely. Randell Pearson:

I be there. There’d be no place for me right now if I had not learned. Gabriella Dimotsantos:

Well, we’re glad that you learned for the sake of the impact that you’ve been able to make in your community.

Randell Pearson:

Right. And that’s afforded me a career and a roof over my head. So that’s a good thing, Gabriella Dimotsantos:

Yeah. Well, thank you so much for that. So, we just have a quick couple of quick questions to go over and I feel like would love to just learn more about your experience being approached for this project with PD Movers and why did you choose it, especially with such a long career?

What stood out about this? Randell Pearson:

Well, I’ve been an independent since 2008. Prior to that, I worked for different design boutiques and advertising agencies throughout New York City. When I went on my own, projects were coming my way started. At first, it was difficult, but by the time it was, I believe it was two 2021 when we started here. Yes. Early in 2021, I got a call from one of the hero’s patients Dr. Ker I’m sorry, Kerman Smith, not to Dr. Kerman Smith, but he gave me a call and asked me, Randy, you do illustrations, don’t you? And I said, yes, indeed. So, he said, well, my doctor needs an illustrator for a project. And I said, well, you know, give me her information

here. And I connected, I sent her my portfolio. She liked what she saw, and that was it. And I thought it was just such an inspirational project to get involved with, have known permit for many years, and had noticed recently a change in the way he was moving., but he never, he was very private about it, so I never asked him what was going on, and he never said. So, this was the first time I had learned that he had PD. So that was pretty significant too.

Gabriella Dimotsantos:

Yeah. What a powerful experience to be introduced through that. Yeah. And with a project at the same time.

Randell Pearson:

Right. And then when we had our initial zoom meetings, we were all getting to know each other. I was so inspired by all the PD movers that were on the Zoom meetings. Every time we’d have one, I get more inspired and more charged up about doing a project and wanting to do a really good job for these people. They sent their headshots, you know, I asked them for a front view. It was three-quarter view profiles, so that could capture their likenesses in this book. Cuz I think part of the human experience is testimony, and that’s what this book is. It’s a book of testimony of faith, courage, endurance, and perseverance. And all of these people seem to possess those things, and that when you have P PD and in the case of some of the couples that were on there, that the caretaker is affected as much as the person actually living with the disease.

So got to learn a lot about that. And again, now what’s going on in my life? I’ve gotten to understand the caretaker’s role and how important that is in the life of the PD you know sufferer. So, when we got started it just was so inspiring to present the illustrations and then they would see themselves and nobody loves anything more than seeing themselves immortalized and artwork. So, they were loving it, and that’s all I needed to fuel me to keep going. There’s a lot of illustrations in this book, and it was a lot of work, but it was enjoyable. You know, I never felt like it was working and it has never felt like work for me. I, that’s one of the blessings of being a creative is it really works if you love it. And I say, no, it isn’t.

You know, so, and when it becomes work for me, and I have a difficult client out, don’t think God to go, I fi I fired a few clients. Not a lot. I can count on one hand, but if, if I’m not enjoying it because it’s coming from my soul. So, I’m sharing a piece of my soul with all of these PD movers. And I think that came through in the illustrations. I don’t know who said a pictures were for a thousand words, and it’s very cliche, but it is so true. And that’s why the thing that drives a children’s book is the pictures. There are some great stories but imagine a children’s book without pictures. It ain’t going to fly, not with kids. So, and I think there’s a kid in all of us when we see ourselves in a book, and it’s telling a story about us, and they have, so you have a testimony and an image of the people, what’s better than that?

And what better way to convey their experiences through these testimonies? And so, I got to learn, I was very impacted by the group. I didn’t even know I was a PD mover until today. I kind of thought I was just a hired gun. But I guess I’ve been an honorary induct feed and I’ll, and I’ll take that. You know, I couldn’t, you know, couldn’t be happier to be part of a group like this. So, it’s been a very rewarding experience. I’ve had just, I could probably count on my one hand how many real highlight projects I’ve had in my long career. And first was when I was 13, I did a portrait of Martin Luther King. My mom, without me knowing, sent the portrait to Coretta Scott King. And she wrote me back and gave, wrote a very inspirational letter. And I still have the letter to this day.

I was 13 then early tooth about 20 years ago. I did a book, a tribute book for Jane Fonda, the Actress. And the Smithsonian Institute on Martin Luther King was a tribute book that was going on a tour. So that was great. I got to meet Jane Fonda and, you know, Nikki Giovanni, who wrote the introduction. I got to speak with her and talk to a few really important folks, and they put the illustration that I did with Martin Luther King at 13 in the book. So that was pretty exciting. It was called The Spirit of Martin if you ever want to look it up. I think it’s still available on Amazon. But and yeah, and I’m, and I’m going to put the PD Movers book, you know, in, in that, in that grouping, you know, as, as highlight projects of my life, you know, it was that important.

It was such a big project. It was a little daunting at first when the girls said, we’re going to need 30 illustrations. And I’m like, whoa. But it was impressive. Everybody loved what I did, usually on the first pass. So, it was a joy, you know, it was a win-win for me anyway, so that’s about it. So, we got the book printed, and the printer that I found Hero insisted that the printer be a printer of color. So, I did my research and found a print printer in India, Indianapolis priority press, and they did a wonderful job. I’m sure you’ve seen the book, Debbie. And they did a very good job. And you know, if we do more books, you know, I’d like to, you know, keep that, you know, keep the team together. I think that’s, you know, we’ve got a good situation going with them. That’s about it. So, I’m ready for the next one. When you are a hero.

Hiral Shah:

Well, I think you know, kind of spoke to how you’ve been personally impacted by this work. Yes. So, but maybe you can share with us from your perspective as an artist, you know, how you feel that the images and visual representation help to facilitate the storytelling. Like, I remember us having conversations about the shadow in the book. Yes. And I think even people have been so struck by how clear it is, the importance of faith and family and community just by looking at the cover. So maybe you could speak to a little bit about where that inspiration came from, how you thought about even the backgrounds as you told the story with your visual, you know, with these beautiful, vibrant illustrations. Yeah.

Randell Pearson:

Well, reading each one of their narratives, I was able, able to extract enough there in terms of what is what was a feeling as well as a literal interpretation and literal being more that I was trying to capture their likenesses and what have you. But it’s about expression, it’s about in the picture with Lorraine, hey, when she’s hugging her mom, you know, those kinds of things are so important to convey that when Lorraine is praying in front of that church those kinds of things are the visual interpretation of the written word. So that was my objective to try to, my slogan for my business is bringing your ideas to life. So, the ideas that were in those narratives I tried to bring to you know, fruition and then in the visual. So that was the objective. And I, you know, the response from the group was, I was pretty good with that, you know.

So, but that’s what I’ve been doing. I’m doing my 14th children’s book right now. And that’s what I’ve had to do. I have to read the author’s narratives and then interpret visually. I go out and go down through the narrative and pick out the parts of the story, the author’s narrative that best illustrate the overall story, you know, what I feel to be the visual high points. And they would always just like in the, in, in our storybook, it’s just like the children’s storybook. It’s, it’s the image that op that’s opposite that the narrative section of the narrative that aligns with it. And so that I’d use the same principle here, employ the same principle with the PD mob’s book, almost like a children’s book for adults, you know?

Hiral Shah:

All I can say is thank you for your artistry, your creativity, and your commitment. Randell Pearson:

It was such a pleasure. And the group was meeting with the group. The times that we met all collectively was such a joy. They really inspired me through this, because an art, an artist loves nothing better than praise for his work. It’s, it’s like an offering of our spirit, of our soul. And the acceptance of that is everything. It goes well beyond a check, you know? That helps too. But, you know, but saying, I love what you did. You’re amazing, da da, da, da. Oh my God, we love that. love that. It’s nothing. Well, and I do it.

Gabriella Dimotsantos:

Well, and I echo the thanks because I think you achieved that so powerfully, even for someone like me and others at the Foundation who viewed your work and viewed the story and were able to feel just our hearts were just really drawn into the work because of the stories and because of the accompaniment that the illustration is just so beautifully tied in the heart of the stories. Right. And imagine that’s

Randell Pearson:

Not easy. Imagine the book without pictures, without Yeah. It just becomes, you know, another document to read, and you just kind of have to imagine everything else. So, this gives you like a reference point, a visual reference point that you can say, oh, wow, yes, this and this together is complete. And it’s a whole, you know, a whole thought, a whole experience on these two pages.

Gabriella Dimotsantos:

Yeah. Well, it was tremendously moving, so thank you. Because like you said, without it’s almost like another webpage with a blog post.

Randell Pearson:

That it’s a children’s book. Without illustrations, nobody’s going to buy it. Gabriella Dimotsantos:

Yeah. But thank you so much for sharing your experience and your passion and how this impacted you. And it’s so tremendously moving for me, and I can only imagine how moving it’ll feel for others who are viewing this, whether they have seen the book and the illustrations, or not yet. It’ll certainly encourage folks to take another look.

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