Beyond Clinical Walls Podcast

Parkinson's Disease and the Black Community

Dr. BCW - Dr. Curry-Winchell, M.D. Season 1 Episode 3

In this Beyond Clinical Walls Podcast episode, Dr. BCW hosts a discussion on Parkinson's disease, featuring guests Dr. Shah and Mr. & Mrs. Coley. The guests share their experiences and work raising awareness about Parkinson's disease, emphasizing its impact on various communities, specifically communities of color with which Parkinson's is not commonly associated. Dr. Shah, a neurologist and movement disorder specialist, focuses on addressing healthcare disparities, increasing access to care, and ensuring high-quality treatment for Parkinson's patients.
Mrs. Coley, a Parkinson's advocate and patient herself, highlights her efforts to provide education, resources, and research on Parkinson's to underrepresented communities. Mr. Coley, her care partner, emphasizes the ripple effect of the disease on the entire family and discusses the importance of addressing health disparities, particularly in communities of color.
Dr. BCW acknowledges the progressive nature of Parkinson's and the challenge of detecting its symptoms, especially in underrepresented groups. The conversation aims to shed light on the intersectionality of Parkinson's and its impact on individuals and communities. The guests discuss invisible symptoms, known as non-motor symptoms, which can affect various organ systems in the body. They stress the significance of early diagnosis and treatment to prevent individuals from suffering without appropriate care.
The episode concludes with Dr. Shah discussing the group's work on their book PD Movers, a free book aimed and providing increased health literacy regarding the impact of Parkinson's on the Black community. Check out this great episode in its entirety for more information. 

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Dr. BCW
Hello, everyone. Welcome to Beyond Clinical Walls. I am excited to introduce my guests, Dr. Shah and Mr. and Mrs. Adams and Bernard Coley, who are here with me today to talk about Parkinson's disease, the work that they are doing to raise awareness about this disease is beyond the traditional measures that you see, far as letting people know about the disease, but also sharing how this disease can affect anyone.
And so when we talk about beyond clinic walls, you know, it's about bringing forward new information as well as information that is about health equity. And when I think about Parkinson's disease, there is so much work to be done in respect to sharing what this disease does as well as how it can affect anyone. So I'm excited to have my guests here with me. It is Parkinson’s month. And so I’ll let Dr. Shah go ahead and introduce herself.

Dr. Shah
Thanks so much, Dr. BCW. And thank you for having us. We're so thrilled to be here to share our work. My name is Harold Shah. I'm a neurologist and movement disorder specialist. I practice out of Columbia University in New York City and I'm the medical director of the Parkinson's Center of Excellence at our facility. And my work really is most centered around how we can address health care. Disparities increase access to care for Parkinson's disease, and ensure that people receive the highest quality of care. So thank you so much for giving us this opportunity to share our work with you. I'm looking forward to today's conversation. 

Dr. BCW
I'm so excited to have you here, Mr. and Mrs. Coley. Please introduce yourselves.

Mrs. Coley
Hello. My name is Denise Coley, and I am a person with Parkinson's. I was diagnosed in 2018 and I am a Parkinson's advocate. And I try to bring education, resources, awareness and also research about Parkinson's to under engage communities. And I want to thank you so very much for having me on this particular panel. Thank you.

Dr. BCW
Thank you for Joining Mrs. Coley


Mr. Coley
Good morning. And thank you for allowing us to address this very important topic. My name is Robert Bernard Coley. I am the care partner and as I like to say, however, I have past is to not because I have the disease. But one of the points we want to share with you this morning is that when the patient is diagnosed with Parkinson's, the entire family and those around her get Parkinson's disease.
So I like to introduce myself also is the person with Parkinson's, because there's no way you can avoid being impacted when a family member has Parkinson's disease. So I represent the voice of the care partners in the situations for caregivers. Their support is being extended family, and that will be part of the message that we share with you this morning.
I, too, am a certified research advocate. I like to say my focus, though, is broader than that, in that we look into the health disparities that impact. One thing you hear is amplified later is that in the communities of color, Parkinson's is diagnosed much later than the norm. And so we're here to address and inform you about some of the health disparities and what we're doing over time.
So, again, thank you for the update this morning and I look forward to this conversation.

Dr. BCW
Absolutely. As you were speaking, there were a couple of things that really came to mind, and this happened immediately when I first got to meet you guys as well. You know, when we talk about Parkinson's disease and we know it's a progressive disorder that, again, can affect anyone, and often there's so many different symptoms that go under the radar or not detected.
And when you think about that, you look at what symptoms are you supposed to be looking for? And there's not a lot of information out there, but there's also not a lot of information with you just mentioned, Mr. Coley, that it does affect people of color and being able to highlight that not only just for patients but also for providers.
So today we are going to look at all of those intersectionality and how they impact the disease and also share awareness and solutions and hopes that anyone listening out there can have some take away is not only for themselves but for their families, and hopefully join your efforts in raising awareness about this disease. So first, I'm just going to kick it off to Dr. Shah. How would you describe Parkinson's disease for the listeners out there? 

Dr. Shah
Sure. So Parkinson's disease is a disease of the brain. Unfortunately, it's a progressive condition, meaning it does change or worsen over time. And it's a condition with the hallmark of four motor symptoms, meaning symptoms that affect one's movements, that being a tremor or a shaking of the limbs, stiffness of the muscles, which can manifest just kind of when you're walking. You may not swing your arms or the body feel stiff and less fluid slowness of movements. I often hear that it takes twice as long to get ready and out the door and finally imbalance and to make a diagnosis of Parkinson's disease. You really only need two of these for clinical symptoms to meet criteria for a clinical diagnosis, meaning that when someone's diagnosed with Parkinson's disease, most often that diagnosis is made by a clinical history and examination. But as you pointed out, there's many invisible symptoms in the neurological world. We refer to these as non-motor symptoms, and they really can impact every organ system in the body. So some examples may be a change in sleep, a change in energy level or fatigue, constipation, urinary symptoms, sexual dysfunction. So it's really important to be aware of the various ways that Parkinson's can manifest or show up in one's life and allow one to get early diagnosis, because that's really what we want. What we don't want people out there struggling or suffering with these symptoms without treatment for decades, which is the story we often hear absolutely. We often hear that people felt like, did I need to seek out mental health or get more physicals for testing because I couldn't figure out what was wrong. 

Dr. BCW
So thank you for sharing that. I hope everyone listening can think about those things that she just shared and keep those in the back of your mind. Keep those in your pocket As far as symptoms be associated with Parkinson's disease. Now, when we talk about that, I always love to highlight personal stories, and I think that really helps give life to diseases. And so, Mrs. Coley, if you could share with the viewers your journey, I would love for them to hear what your journey as well as Mr. Coley's journey, because I love how he is part of this process of what happens. So if you could share that with listeners, that would be wonderful.

Mrs. Coley
Wonderful. I'll share the story, but I want to make one quick comment for everybody to keep in mind. Parkinson's Disease, Equal Opportunity Club that you're inducted into, it's all cultures. All races are ages and throughout the whole world. 10 million plus and the world 1 million plus in the US. Also, by the time you get your diagnosis of Parkinson's for 10 to 15 prior years. So that's a little headline before I get started on my story. My story begins as Thanksgiving dinner in November 2017. We were eating dinner and my children said, Mom, you're shaking. And I said, No, I'm not shaking. I looked like I guess I was shaking and Vanessa's, Yes, you're shaking. We made an appointment with our doctor and he said that I needed to go see a neurologist. I was perfectly fine going to see the neurologist because I think I was essential tremors. I've heard a lot about that. So we went to the office. He did a few tests and he promptly says, You have Parkinson's. The wall went down. I heard nothing else after that until the very end of the appointment because of the shot Parkinson's. He just gave me a death sentence. What? My world is flashing before my eyes and I'm thinking all the things I love and advocate, advocate for and passionate about. I will no longer be possible. So from there we went home. We decided that I would get the death scan and the desk and show that, yes, there were some loss. So I had a really sit down and think about it. So I gave myself a short pity party about three months pregnant will say otherwise. I only told I Have taken. I only told four people because if my life was collapsing before my eyes and everything that I knew that I loved, that I wanted to do and continued to do was at a success. So I was sort of a state of shock and I had to really sit down and think about what was going to be done from that night on. I had Parkinson's research daily, wherever I can find updates on what's going on. And then I had a topic for an hour and I said, You know, maybe we should look at these gaps and work together on this. And he looks at me like I have my whole plate of work. I have so much work to do. Putting this on is just going to be an enormous piece. But we decided that perhaps there are some significant gaps that we were interested in looking at under engagement, getting messaging out, making people aware, making sure people don't suffer, and that they have hope and quality of life. So we decided that we would repurpose some of our skills and work together to be a Parkinson advocate. So I contacted the Parkinson Foundation and the foundation had a program called Parkinson Advocates and Research. So Bernard and I both were accepted. We went through the program so we could be certified to work with researchers as a salient part of offices. As the very final day they ask you, Well, you should become a Parkinson's advocate. What is your emphasis? And so at that point I had made up my mind that for me, as brings awareness, which is is not old age symptoms that slowly affects you, but you need to be aware of the symptoms, says Michael. You need to make sure that you are given the resources to help yourself and now whom to contact. And thirdly, to make sure once you have been diagnosed, you've got the research, you've gone to see the neurologist and M.D.s that you participate in research because everyone who has Parkinson's should participate and research. And today's generation is available to those who have good sense and there's no charge and you get counseling. And why is that important? Because if all of us do not participate, especially those who are women and people in under engage communities, we won't have a full big enough to find out if there are other genes out there that might help in terms of therapy treatments. So that's a little short story. And with the ending at that point, that was two years ago I met Dr. Shah and we became part of the city Movers and the book Lady Movers. We keep moving.

Dr. BCW
Thank you for sharing that. You know, and now go ahead, Mr. Coley.

Mr. Coley
So so now I'll put us back on the road. Yeah. As as is my role on the air partner. So let me go back and touch a couple of places along the journey. So we mentioned that Dr. Shah mentioned the motor symptoms which are generally used to diagnose Parkinson's disease. The challenge, though, from the perspective of the family, the care partner and those others that are impacted is that there are many other symptoms and they show up well before some of the motor symptoms. So, for example, I began doing business travel with Denise some seven or eight years before she was diagnosed because she was falling, she was having trouble lifting things. She was slowing down. We began to have to travel at least a day in advance of conferences or any work that she was doing, because at the time we thought she was having air sickness and needed a day or so to recover. And I'm mentioning these kinds of symptoms. There were others. Her handwriting was small. So my role as Cure partner didn't begin with her diagnosis. In fact, I like to say my journey as a care partner happened on July 4th, 1976, the Bicentennial, because I said I do. And and the journey began at that point. And what I tell people, though, is what I didn't know as a care partner was the informed consent form was really lacking, and I didn't know what I was signing up for when I said I do. But here we are. One point a highlight for those of you who find yourself in similar positions is your role as a care partner. You should think about that as part of the treatment plan because Parkinson's patients need a lot of support and you are the first line of defense in this degenerative disease. So right there in the exam room, when Denise got the diagnosis that she has Parkinson's disease, I like to tell people that what happened next was a scene out of peanuts as she was looking at the doctor and what she heard was wah wah wah wah, wah, wah, wah wah wah wah, wah, wah wah. For the next 30 minutes, she heard nothing. She pronounced intended as the doctor had given it as a death sentence. I said, That's not what he said, but I get it because it was that for people in our community who aren't familiar with degenerative brain diseases like Parkinson's disease, it translates into a death penalty or a death sentence. You know, all your worst fears come right before your eyes and you don't have the experience due process as it, which is why we set off partly on a journey of raising awareness because there is not a need to suffer as much if you know more about this and how it impacts and the things you can do. So I mentioned that I had started traveling on the nation's business jet. We started doing more together on trips. She would go with me. I'd go with her many years before we got the official diagnosis because she, in fact, that Parkinson's, that so many other things were pretty challenges when she was giving speeches, the need to review things, I mean, all those things so that she could continue. Let me add two insightful points right here. So one of it is the lack of information in our community, but also the lack of information outside of our community about how we're impacted. So, for example, Denise mentioned Julie told four people, and that was one of our first bones of contention because I said, no, we have a lot of people, but there's there's good reasons. For example, we've talked to a lot of Parkinson's patients who will not tell anybody because they want to keep working. And when we talk about lack of information in communities of color and outside of these communities about what's going on, there are real fears that aren't just, oh, Henrietta Lacks or Tuskegee, their real world, things like I can't afford to lose my job, I've got to help. Or if you are a female with Parkinson's disease, I got to take care of my family. I don't want people to know because I don't want to not be in a position to carry out my responsibilities in life. So there are things we impart now as we go out and inform other communities who have these resources about why sometimes why they are not reaching under engage communities, what are the challenges? For example, you can't just hold an educational seminar and expect people to show up because if they don't want anybody around them to know because they fear they might lose their job or they might be ostracized because of the stigma attached to any diseases that are in many of these communities. They're not coming. I mean, they're just not coming. So so that's point number one. We need to talk about this stuff. We need to raise awareness, but it's bi directional where it is. We both need to inform the community and we need to inform those who are trying to serve the community, who have great intentions, but better understand what that what the challenges are. So moving along our journey that I like to say that the longest travel we had was the journey across Siberia. Okay? It was a trek that was from the doctor's office to the car in the parking lot because a lot happened on that trek. Number one, I had to convince my wife she wasn't going to die before we got to the car. Number two, the argument started about telling people because I said, look, people see something's going on. I'd rather fill in the gaps than to have people guess because they don't always guess the nicest things. And if we're going to do this thing, we're going to have to deal with it. And at that time, I knew a smidgen of what I now know about heart disease, but I knew we were we were about to get in engaged in the fight of our lives for the remaining time. And it was going to have a significant impact because in fact, we had already been having impacts noticeably for at that point, like I said, at least seven years. And then when we figured it out, it was more like ten years before that that many of the symptoms we now know showed up.

Dr. BCW
Ms. and Mr. Coley want to stop you there just because there's so many important pieces that you have shared and I want to bring them to light for everyone listening. You know, when I think about the fact that you said even before the diagnosis, she was slowing down, she was falling. There were all of these things that were happening. And I think it's important that we emphasize that, because I'm sure there's someone listening right now that might have the symptoms that you are mentioning or know a family member that has seen something like this, because the symptoms are quite general, but they could be Parkinson's. And I think that is so important to really have that connection where anyone listening right now, if there's something from a loved one, a friend, a family, and you've noticed that they're not at their baseline, that there are things that they used to do that they didn't that they can't do. Right now, the handwriting has changed any of those kinds of things. I want you to consider this disease. And so I stop you there because I think it is so important what you mentioned for viewers to kind of take note. The other piece that I want to highlight was the fact that you talked about people in our community. It's often a barrier just for us to even feel like we can trust the health care system. And then there's also, I think, our own personal circle, whether you want to say it's race, ethnicity or culture, we're there is this fear of sharing what is happening to us. And I think there's a lot of things that are associated, such as, Oh, that family's not as strong or this family's having issues, and there's this thought that we have to hide things in our community. And I, I would assume you know where I'm coming, whether it's mental health, physical health and so forth. But you mentioning that I think it's important for people to think about their health is, of course, your most prized possession. And by sharing what's going on, not only with your health care provider, but with your community, that is vital and being able to get the care that you need or get there sooner because as you mentioned earlier, this disease or these symptoms were happening or Mrs. Cooley mentioned 10 to 15 years beforehand. So I think all of those parts are just really important that we highlight. And when we think of the health inequities and how this disease is often not talked about in people of color, can you share some of those, some of the things that you were able to find out during your research when you were diagnosed?

Mrs. Coley
One of the things that I found out is there weren't many people of color who were individuals that you could look up to with Parkinson's. You had Linda Ronstadt, you had Muhammad Ali, and Reverend Jesse Jackson and Brian Grant were some of the ones that we had. So I had to really dig down and do some research. And there are a couple of things that tie into it further. It says that I can also emphasize with that I had the disease 10 to 15 years before diagnosis. The problem we had was from 2000 to 2005, I did marathons for leukemia lymphoma, and I did a three day breast cancer walk. So I was in optimum physical shape and I was putting in lots of mileage seconds after a diagnosis. And because it's a slow degenerative disease, it small. It came on. I slowly was starting to fall. I slowly was starting to have fatigue. I slowly was being tired and I slowly couldn't do my ten hour days and things of that sort. So those things were very slow in coming. And then when I was diagnosed, it was the whole body is affected the families for an hour, but it also affected the animals. The biggest dogs will walk me up the stairs and walk me down the stairs, which they never had to do before. And developing the right care team. Bernard I spent a lot of time about parenting. If you find someone who has the symptoms of fatigue micrograph here, insomnia, thermal disorder, dysregulation, which I have quite frequently, as well as the fatigue, and you have to look for those symptoms. You should probably go and have a checkup to see what's going on. And then each one of us is different. Each one of us experiences symptoms, motor and non-motor, but not all the same. And if you're an advocate, which I decided to do, I started taking all my research and putting out on social media.

Mr. Coley
Which if we're not out there, this is an important point I want to drive home. If we're not out there, the doctors don't think people in communities of color have Parkinson's disease. So part of what we discovered was the need to inform the medical community, many of whom received a thumbnails worth of education about parts of disease during their training. They've heard of it. They know it's a degenerative brain disease, but they have not experienced, to their knowledge, a patient of color who has party disease. So they're reticent to diagnose. It doesn't even come in their thought pattern to diagnose it. Also, people then in your surrounding community because they don't know anybody. We had prior disease, don't think that's your problem. You know that you have too much to drink or you know what's going on. Why are you falling? Why are you bumping into things? Why are you stammering when you talk a little? Why is your voice so soft? Like, oh, are you? Which is one of the symptoms So we have to get out there and raise awareness so that people, even if they go to the medical facilities, get properly diagnose. So that was one of the things that we learned. The second thing is developing the trust. So how do you get there? Well, first we have to communicate back to our communities things that have changed in the way of protocols around clinical research, reasons why they can begin to trust the research environment more than they could in the past. So it behooves us to communicate that back to the community, that there are more safeguards in their work and then probably we like to put it under a big hand of representation matters. The book itself, who's in the book? The storytelling about us by us that representation is important, but it's also important that we show them that there are neurologists, MDs who are from the community of color, that there are people that look like them. We often describe the moment we were first on the screen with PD movers. Literally, we were on the screen and for the first time in our lives, we saw more black people with PD than we knew existed. It was an aha moment for us, but it was also across the screen tears. We were all choked up looking at each other because we were all experiencing in that moment the same thing. None of us had ever seen that many black people on the screen at the same time with Parkinson's disease and here we are. We're just like, Wow, we are not alone. So one of these other things that I want to lift up, Doctor, is that you're not alone. And that's important. I you know, if I'm out there in the alley by myself, I have a completely different feeling from the feeling that I get if I just need to go out and find more like me. So one of the other things that's come out of our research, for example, is we're exploring the need for special culturally sensitive support groups. Because if you take all the baggage that we bring good and bad culturally into living a better life with Parkinson's, you need to be involved in a support group. But what if you can't find one where you feel comfortable? You don't feel like you can open up and trust the people in there? And yes, there's a historical context to all that. But now that we recognize that, one of the things we've set out to do is to inform organizations who support the support group, leaders of how they can reach the other, engage communities and inform others of the need for us to produce culturally sensitive support groups to be able to support our community. And so as the initial bridge, we began to focus from our research on solutions to the various problems and in the Parkinson's community, which are impacted by these health disparities and the challenges with trust, you know, we were there.

Dr. BCW
So that was perfect. Mr. Coley. I appreciate that. And this is where I'm going to want Dr. Shaw's opinion, and I'm going to share a little bit of mine as well. The information we receive as physicians going through medical school and really knowing a lot about the disease. I endorse fully that you mentioned. There's just not a lot of emphasis put on the disease. And when it came to what would a Parkinson's disease look like, it definitely wasn't someone that looked like me. And so there is more work that we need to do in respect to really what Parkinson can look like, what should be the answer. Anybody can get this, especially we need to put more time into medical students and residents to look at people of color and put that part of their differential diagnosis. What are your thoughts on that? 

Dr. Shah
Yeah, I'd have to agree. You know, I think that in medical school and often in training, we see the image that James Parkinson sketched back in the 1800s of an older white gentleman with tremor and we now know that not only is that image inaccurate, but it misses a lot of the complexity of Parkinson's disease. So there are different phenotypes or meaning, different ways that the disease presents. Not everyone with Parkinson's disease has tremor, so if you're only looking for the tremor, you're going to miss a lot of folks out there that have Parkinson's disease without that specific symptom. And just to underscore that, you know, as Denise pointed out, this is a disease that affects each person in a different way. So people need to be aware that there's a variety of motor and non-motor or invisible symptoms that can be the heralded feature of this disorder. So including loss of sense of smell. We've heard about fatigue, constipation, pain, anxiety or depression can precede Parkinson's disease, apathy, a lack of kind of interest, sleep disturbances and so on. So it's a very complex disorder. But I guess, you know, we're trying to raise awareness of the fact that it can affect all genders, all ethnicities and races, the young and the old. And so it's not just a disorder of an older adult, but it can affect all ages. And it's critical for people with Parkinson's and their families to be educated and empowered so that they can access these critical resources. Because, you know, just to summarize or restate what has been echoed here, African-American black and brown individuals, unfortunately, face prolonged delays to diagnosis because of many of the this lack of information. They're less likely to be started on medication. At diagnosis, they're four times less likely to be referred to rehabilitation services like physical therapy, occupational therapy, speech therapy. They're eight times less likely to be referred for advanced treatment like deep brain stimulation. So this all leads to higher rates of disability and compounds the impacts of underrepresentation in research. So we really need to bring this to everyone's minds because one of the disturbing facts is we don't know how many African-American, black and brown people are living with Parkinson's disease today in the United States. And that's really sad and disturbing and speaks to the fact that we're not reaching, you know, these communities. And that's part of what brought us to this type of work. You know, I saw that lack of representation in the clinic waiting rooms, and that's what led me to pursue a community based participatory research program, training. And that's where I met Ms. Anita Parker, who's been my partner, along with Dr. Lori Quinn. Ms.. Parker's the outreach director, and say Amy Church And she told me from the beginning here, all we have to talk about it. People aren't talking about it. And if you go into the community, start talking about Parkinson's disease, they're not going to come. And so over time, we did a series of events and educational events.
We showed up and we built that trust that you're talking about so that we could inform, educate and empower. And the product was the pre movers book, which has just been, I think, so amazing because it combines first person narratives that use a storytelling approach which is engaging, easy to understand whether you have limited health literacy or experience with the medical enterprise or you're a professional. I've been told that, you know, people learn from this book because it's the stories of the individual and we're putting them front and center and using, as you said, illustrations that underline the importance of representation. When people see themselves in these stories, it's opening doors. It's opening minds and hearts to the lived experience. So we're just so proud of this work, and I think it's a model of what we can do if we put the patient and care partner at the center and how impactful a resource that can be developed. I think we as doctors, we often think, why aren't all the answers or I know how to solve your problems, but I think we are not aware of the many assumptions that we make about the preferences and priorities of patients and their families. So I think it behooves us, and I've learned so much through this process of how important it is to have patients and care partners involved. Every step of the way from conceptualization to implementation. And so that's really been so important to me to share and remind people of how important that is. Absolutely. And this is the perfect time to really highlight the book and how you can order it when you see this cover. 

Dr. BCW
I just want to share when Dr. Shah sent it to me and I opened it and I got to see the illustration and just the the level of detail and representation put just from the cover of this page, it actually it was overwhelming because of happiness to see something be represented as it should be. It's called the PD movers. We keep moving, living and thriving with Parkinson's disease in our black and African American communities. I am so excited for people to check out this book. What did I do? Not doing is bringing my guests back where a part two and part three series where we can really highlight even more about this disease. Highlight What does it mean to be a care partner or a caregiver as well as how do we make strides in making this disease more at the forefront? What can we do to increase engagement? So for me, I'm all in as a partner, not just as a one time. Let's amplify this, let's continue the conversation, let's continue the work and hopes that more people know about this disease and we increase representation. I want to start with Mr. and Mrs. Colley and see if there is any other parting words. I know when I first met Mr. Colley, he had a very powerful quote or statement that he shared with me, and I'm excited for the viewers to hear, so I'll kick it off with you two. Any parting words.

Mr. Coley
Around the area of research? I like to tell people that I'm also a scientist background and science and math, and I tell people that what you may not realize is that we may be one diverse patient away from finding a cure or producing a powerful and better treatment. And so it is extremely important that we bring diversity into the research space, the education space, because we have been depriving ourselves simply because of the lack of diversity and inclusion in clinical research work.

Dr. BCW
Perfect. And Ms. Coley.

Mrs. Coley
I truly believe that each patient and care partner in their ecosystem can be empowered to take control of their journey with their help. Imps and Neurologists. My last parting words is something that Maya Angelou said. Maya Angelou said, Hope and fear cannot do this together. So I always think about that, and I say well, I choose hope because we can empower people to have resources to take control of their journey.

Dr. BCW
I love that. And Dr. Shah, I would love for you to share how people can get to know about the book information. 

Dr. Shah
Of course, the website that Mr. or Mrs. Colley, the organization that they have all of that information. Can you share with the listeners, please? Absolutely. So you can connect with us on Twitter, Instagram, LinkedIn or Facebook. You can also download the book at the Columbia website. If you were to Google Columbia PD movers, you'll find it. You can also get a hard copy of the book for free through apeda. The American Parkinson's Disease Association, who's partnered with us to support its dissemination and distribution. But I just want to make sure everyone knows this book is free. You know, our goal is to get this book into as many hands as we can. Share it with your friends, your family, your community, whether it's in a YMCA, a senior center at your church. If you'd like a bulk order, we're happy to accommodate you because we want people to get this book and see the beautiful stories of individuals like the colleagues, and more so that you can really know that Parkinson's disease. There are ways to live and thrive and that it does affect all people. So we all need to be educated and empowered. Love it.

Mr. Coley
One final statement to on that. We want you to know something that we discovered almost by accident. We started hearing almost immediately from people that they were reading the book cover to cover in one setting. And that really said, as obviously white, they're reading about a medical book and they're reading it cover to cover. And the punchline is 60 pages. But then the next thing that got us excited and that was, as my wife likes to say, it's multi generation. We hear people talking to their children. We have families now talking to each other where they weren't sharing the diagnosis before. So we're excited. And for a lot of you will check out the book because it has opened the dialog, something that all of us have been trying to do. People are communicating, using the book as a tool.


Dr. BCW
Love that. Yes, it is a form of health information and it's it needs to get out there even more so. Thank you all for joining me today. It has been a wealth of information and I'm really excited for listeners to push the needle, move that needle and share this information. Let's keep the conversation going. This is Dr. CW.
I just want to thank everyone for taking the time. Do listen, this is Dr. BCW with Beyond Clinical Walls. Thank you.


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