As we sit down with the fervent Dr. George Ackerman, he unveils the depths of his dedication to battling Parkinson’s disease, a quest born from the profound loss of his beloved mother, Sharon. "Together for Sharon" is not just an initiative; it's a beacon of hope, symbolizing the relentless fight against the silent encroachment of a disease that robbed him of a loved one. Our conversation traverses the rough terrain of early detection, the pitfalls of misdiagnosis, and the overarching need for heightened awareness. Dr. Ackerman imparts the tale of his mother's battle with Parkinson's, her struggles with its surreptitious symptoms, and the dire need for our collective resolve in this escalating fight. We weave together the power of human stories, which serve as the catalyst for change and a torchlight pointing towards a more informed future, where Parkinson's disease is not a whispered fear but a challenge we meet head-on.
The dialogue takes a turn to spotlight the broader societal implications of understanding Parkinson's, touching on the heartrending incident of a woman with Parkinson's unjustly ousted from TikTok due to misinformed perceptions. The urgent call for comprehensive education within law enforcement becomes apparent, emphasizing its criticality in sensitively managing interactions with those affected by such conditions. My own journey of interviewing individuals across the globe who live with Parkinson’s threads into our discussion, underscoring the transformative power of shared knowledge and empathy. This episode is an intimate expedition outside the traditional clinical confines, inviting listeners to join a movement where awareness isn't just about recognition but about active and compassionate support. Remember to subscribe and engage with our content to keep pace with the narratives that transcend the clinical realm on Beyond Clinical Walls.
Thank you for Listening to Beyond Clinical Walls Podcast.
To find more from Dr. BCW
As we sit down with the fervent Dr. George Ackerman, he unveils the depths of his dedication to battling Parkinson’s disease, a quest born from the profound loss of his beloved mother, Sharon. "Together for Sharon" is not just an initiative; it's a beacon of hope, symbolizing the relentless fight against the silent encroachment of a disease that robbed him of a loved one. Our conversation traverses the rough terrain of early detection, the pitfalls of misdiagnosis, and the overarching need for heightened awareness. Dr. Ackerman imparts the tale of his mother's battle with Parkinson's, her struggles with its surreptitious symptoms, and the dire need for our collective resolve in this escalating fight. We weave together the power of human stories, which serve as the catalyst for change and a torchlight pointing towards a more informed future, where Parkinson's disease is not a whispered fear but a challenge we meet head-on.
The dialogue takes a turn to spotlight the broader societal implications of understanding Parkinson's, touching on the heartrending incident of a woman with Parkinson's unjustly ousted from TikTok due to misinformed perceptions. The urgent call for comprehensive education within law enforcement becomes apparent, emphasizing its criticality in sensitively managing interactions with those affected by such conditions. My own journey of interviewing individuals across the globe who live with Parkinson’s threads into our discussion, underscoring the transformative power of shared knowledge and empathy. This episode is an intimate expedition outside the traditional clinical confines, inviting listeners to join a movement where awareness isn't just about recognition but about active and compassionate support. Remember to subscribe and engage with our content to keep pace with the narratives that transcend the clinical realm on Beyond Clinical Walls.
Thank you for Listening to Beyond Clinical Walls Podcast.
To find more from Dr. BCW
Hello everyone. This is Dr BCW with Beyond Clinical Walls. I am so excited today to introduce my guest, dr George Ackerman. The work that he is embarking on and the reason why he's doing this work is just amazing. He is doing amazing work in the space of Parkinson's disease. He represents advocacy, and when we talk about really finding a cause that is true and near and dear to your heart and finding ways to amplify it in a way that is connected to his passion and dedication for change, I'm just going to share a little bit about him and then I'm going to let him introduce himself, but I just want to talk about Dr George Ackerman and the reason he has the organization together for Sharon.
Speaker 1:George lost his mother, sharon, from Parkinson's disease on January 1, 2020. He wanted to find a way to honor his mother and continue to help in Parkinson's awareness. However, he wasn't exactly sure how he was going to do it, but through family and through just this amazing level of investment in the disease and community involvement he has been able to create together for Sharon. It has allowed him to not only keep the legacy of his mother alive through, of course, just his personal experience, but also allow her memory to live amongst others through a level of advocacy. Dr George Ackerman reached out to me through LinkedIn and wrote a beautiful note sharing why this work was so important to him. I'm so excited for you to meet him. Welcome, dr George Ackerman, to Beyond Clinical Walls.
Speaker 2:Thank you, dr, and thank you to all your listeners. It means the world to me and my family that took up this opportunity to talk about Together for Sharon. Unfortunately, today we're brought together for sadder reasons, but I find, in the long term, some incredible relationships and inspiring people like yourself, so it helps me cope. My mother passed away four years ago, approximately around the holiday time, which is even more tough, but, like I said, what I decided is I didn't want her to be forgotten. I find that in our society, unfortunately, there are a lot of issues, but they kind of forgot Parkinson's disease, and it's one of the most in my research, one of the more highly growing ones in the United States and throughout the world. Approximately one million people have it in the US, but 10 million in the world, so it's something that should be more focused on. More laws need to be made and I'm just trying. I'm only one son, one person, but together I'll be able to hear. Our voices are so much stronger and again I thank you for your time.
Speaker 1:Oh, you're welcome and I thank you for your time. You know I always start off with the question of why you do what you do and I think it's interesting to hear about you know why you decided to really amplify this work or this, this movement towards more awareness about Parkinson's disease.
Speaker 2:Thanks. I feel selfish but in a way I didn't want her to be forgotten and it helped me cope, you know, by talking about my mother. But then I learned how many people in the world have it and I found it's not just about us anymore, it's about other people. When I see people, you know, with tremors, shaking, when they can't sleep, many sleepless nights, when they feel that they're losing hope because the doctors just don't have a resolution, that's all the little things that drive me and I started to go to the past year on calm. It's just a website, it's just me.
Speaker 2:I always mention I'm not a medical doctor. I'm a doctor in philosophy, criminal justice and also a lot of my background is in law enforcement and law. I was kind of thrust into the world of care taking when I found out my mother just needed more than just the you know hello and sorry to hear I took over, you know, everything in her life towards the end. The last three years are really tough. She had Parkinson's for about 15 years but I wasn't aware. So my goal not just speaking to you today but also going forward and in the future is that we can reach the people who don't have Parkinson's and the people who aren't aware, because I find if we can get everyone as a group together, collectively throughout the world, that we can really finally end Parkinson's disease.
Speaker 1:Absolutely. And when we talk about that disease, you and I know, and a lot of people listening have heard you know the symptoms can be quite vague and not everyone thinks right away that this could be Parkinson's, whether it's the clinician, whether it's the patient. The more that we can have this topic part of the conversation, part of when symptoms are mentioned, that the thought that could this be Parkinson's disease is so vital, because we have seen, and I've actually highlighted in the past, studies that show sometimes patients are diagnosed for seven to 10 years later after living with these symptoms and how disruptive it can be for just your everyday life as well as just your interactions with others when you don't know why these things are happening. Dr Ackerman, I would love for you to share you know what were some of the telltale signs now looking back that you weren't aware of with your mom that were early signs of Parkinson's, and then also share with everyone you know some of the later signs that once you were aware of the diagnosis.
Speaker 2:You mentioned late diagnosis, but unfortunately they're also misdiagnosis, so it's a whole world that still is being researched as we speak today. My mother had it for 15 years. We didn't really know much because she was that kind of tough Brooklyn independent, you know mom, who didn't really want to burden other individuals, like myself, even with her issues or problems. Even today, if she knew what I was doing on her bath she would laugh and say, george, don't bother, go spend time with your family. So that was just how she was. So what I noticed? After like 11 years she really was still able to drive, have an independent life shop. Her left arm now started, after towards the last three to four years, becoming stiff, though she, when we went out to restaurants my wife and her and I she had trouble cutting food. So that's when I knew something was wrong.
Speaker 2:She said Parkinson's, but I never really took it serious because we were told by many doctors that you don't die at Parkinson's, you die with it and that you can live till 80 or 90. That you mentioned earlier from a clinical perspective, something very important that each and every individual listening today, even myself, who could get it because that's another topic we have time later. But everyone's different so it treats every individual completely different. That's why it's such a difficult disease to really capture and focus on. My mother didn't have the external traumas like someone, a leader in the area of awareness, michael J Fox, who has. He is out there fighting for awareness, so you'll see him. He has a much more exterior where you can really see it.
Speaker 2:So she had, she said, internal, but she had dyskinesia where the toes started curling. She also had some movements that weren't something that were normal, plus very sad to see, where she would kind of like just move and involuntary is really the word. So these things kind of just kept building up. But again, every time we thought about it we were told not something that you have to not worry, but that we'll be able to handle. And unfortunately she went for a special study because we were out of ideas. We tried everything. When she came back that night I found her at 4 am. I didn't live at the same house, but I rushed over 4 am and I found her moving her furniture out of her house and at that time I think the dementia set in, because that's an additional issue that occurred and with her hallucinations and delusions she thought someone was inside trying to harm her.
Speaker 2:And that was really the night that not only changed my life forever, but I literally took over my mother's life from banking to food to not allowing her to drive anymore, and it was something very heartbreaking because someone who for 60, 78 years lived that independent life, to tell them they can anymore is very difficult.
Speaker 1:And when you had shared that story with me even before and hearing it again, it is heartbreaking on so many different levels, not only for your mom, of losing that identity, losing those pieces that are a part of her. And then you often wonder how much she can really understand when you think of the trajectory of the disease and the progression of it. And so there's a loss there as well, of not only for that individual but also the ability to understand what's happening. And then I also include you and I know you have been so wonderful in respect to always talking about your mom, but I also have to highlight how this impacted your life and, of course, as an amazing son, you jumped in and you were her caregiver and did everything that you possibly could do to help her. But that is also, as you mentioned, a life-changing event for you becoming a caretaker.
Speaker 1:All of those things can be quite overwhelming, even if it's rooted in compassion and love and wanting to do it.
Speaker 1:It is a lot for the entire family. Thank you for just sharing that piece, because, whether it's Parkinson's disease or other diseases, there is someone out there listening to your story that is experiencing this or may experience that being able to pull from your story can really help someone in a moment that could change their life. One other piece that I wanna highlight to your point we talked about late diagnosis and early diagnosis, and I love the fact that you mentioned misdiagnosis, because that is happening so much when we talk about Parkinson's disease and I would love for you to share when you and I were talking before the interview you had mentioned, when we talk about the symptoms, how vague they can be and also be associated with other things someone in law enforcement you have brought forward when people are pulled over or driving, they could actually be displaying symptoms of Parkinson's disease, and I think that misdiagnosis, that kind of misopportunity, instead is turned into a punitive or something else, and so I'd love for you to highlight that.
Speaker 2:There's a lot of issues I'm working on. Unfortunately we don't have enough time in the day, but there are many nights I don't sleep just thinking about all those who are you know. Gee, they're just starting out going through this. That's why sometimes I find myself stuck in my own little world because I don't. I'm not diagnosed with Parkinson's and I'm not no longer caring for someone alive with Parkinson's, so I'm stuck. It is really not a community and some days I feel for me. So I try to help all the different communities because I was a caregiver. But again, it's an interesting you know area because I'm not in those two big ones With awareness. There's so many facets and aspects that are so important as an attorney and law enforcement officer reserve. There's many stories I've been hearing and I'm actually just starting to research. I will write a book where it'll probably take a little time.
Speaker 2:I actually did research this week before we met and see nothing really out there. I used to teach at the police academy and I can just imagine and some of the stories. The other day I had a story that someone was actually kicked off TikTok and somebody reported her stating that she is either drug addict or drinking, making videos. Well, sadly and my heart was broken again when I found out no, she just says Parkinson's and she actually was not banned from TikTok but banned for the live video and she actually made money to help support her ability to gain medicine for Parkinson's using the live and now she's been thrown off. So thankfully, I'm an attorney and I'm fighting for these individuals and I won't take money or anything, I just do it free. So I wrote out. I wrote to her and told her let me know how I can help. Let's get you back on there. Those social medias can be great in one way, but it's terrible for another, especially when you're trying to appeal things. But again, I haven't heard back yet from her, but I hope I can still help her.
Speaker 2:There's one example of scenario where someone, because they're shaking and they're at this condition, their signs of Parkinson's is now getting them banned from TikTok, which makes no sense. So there's a misconception. There's a lot of problems with entities like that. And back to my area in law enforcement, there's no time at all dedicated in the whether it's six months full time or eight months at evening to the police academy for understanding with Parkinson's. We do have a little portion, maybe an hour or two about mental ill like Baker acting thing, but in my lessons and what I've taught I've never seen it. So I think it's something that needs to not just be changed federally through Congress and House of Representatives, but really implemented throughout the whole entire law enforcement and all first and first responder areas like fire departments. Medics have a little bit more knowledge obviously, but it's something that needs to also be changed in the standard operating procedures of each department.
Speaker 1:So for those who know me and have listened in and taken the time to know my journey and my reason why I do beyond clinical walls is to really provide health information in a non-traditional format that advocates and shares information, because the more you know, you can advocate not only for yourself and for your loved one, and why I bring that forward is bringing forward this information through this podcast. It's a way to reach people so they can hear when Dr Ackerman is talking about how the symptoms of Parkinson's disease can. They can vary and here we have an individual who was on TikTok and her symptoms were misconstrued as a substance abuse disorder and something else. The more we can highlight diseases and what is associated with it, the more knowledge and health literacy that we can put out, the more we can advocate so people can know about these diseases and be able to have the information to help.
Speaker 1:I love that you mentioned whether it's in law enforcement or different areas. We have to share this information, we have to cross pollinate. So we talk about mental health and how you know, when we're going out to different scenarios and being able to have that mental health component to it, that law enforcement isn't always the right avenue. Well, think of how amazing we what we could do is if we could share more health information as well, because having the knowledge that that individual has Parkinson's disease or other diseases, and how that builds a more versatile repertoire of why this person is behaving in a specific way, why certain things happened in that situation, is vital and can really change our narrative and how we treat whether it's mental or physical health and its impact in certain situations, and so I'm so grateful for the work that you're doing in creating that narrative so people are more aware.
Speaker 1:I'd also love. You have an amazing community, and so, although you say you know you're no longer a caregiver and your position within the disease is different, I find your position to be so remarkable because you have continued to put this work forward and you're not stopping. You're helping whoever you can Can you share with the listeners. You know some of the work that you're doing right now that you're advocating for, as well as some of the communities that you're involved with.
Speaker 2:Sure. When I found out a few months ago that there were 10 million people around the world with Parkinson's, I was, you know, again shocked. So I decided again, it's not really just about Together4Sharoncom, there's no longer just about myself and my mother. Obviously, we have a journey, but there's so many journeys out there that need to be shared for awareness. So I decided why not, you know, share other people's work? I thought I was going to do one or two and that would be it. In three months I've done about 400 interviews with people around the world, from England, spain, france, italy, Africa, australia so it's not just the US anymore and we put them under interviews.
Speaker 2:If you go to Together4Sharoncom, I do everything myself, pay myself. I don't ask for money, I don't even want donations. Like it's funny, because we do walks for Parkinson's, we'll have a table and my wife and I just hand out, you know, bracelets that say in memory of Sharon. I have one here. And then you know we do it for free, but we're in the middle of all the pharmaceutical company, so sometimes the people pass by and they're scared of us because they think we want to sell something, and then when they realize we're just there to support them. They come over and they cry and they hug and kiss us. So it's really that's the best feeling, because you know I don't want anything again in return. I want everyone listening to know we send our love and support and literally don't send money, like I'll be the only person you might ever meet that says don't, we don't want anything. We just want to share journeys, want to share stories and we want to cure. My dream would be not to do this anymore. Obviously, I'll still talk about my mother. We're writing a book now about our journey, but I'm also going to write a follow book on all the interviews.
Speaker 2:I actually had the honor to interview Muhammad Ali's daughter. I've had some incredible individuals from the Parkinson's Foundation, the American Parkinson's Disease Association, the Michael J Fox Foundation, brian Grant Foundation, which is a great story. He was a professional NBA basketball player with the Portland Trailblazers and, ironically, I'm a big basketball fan. I grew up watching him and I was shocked to find out that he had Parkinson's. So there's just so many great people out there. I just don't find that we all come together. So if you go to the website togetherfishermancom, you can click about us to see more about me and my mother. You can click interviews and just look through the 400.
Speaker 2:There's also what I take the most important personal is the button that's as partnerships, and that's like when I was going through this and my mother, I felt alone, like I had no one to speak to. I didn't know where to go. So what I did is I tick all these organizations and different resources and put them in one space to someone and again, I don't want money and we don't ask them to pay, so I just do it for myself because I want them people like caretakers, like me at the time, and those diagnosed to know that they're never alone. And finally, if you click media I tried to make it a little bit more fun where you'll see, you know, different things. I've been involved with music presentations. We started our own little podcast and my wife and I just a conversation on awareness, and then today's podcast I'm going to add is I think that it's important that we share also all your incredible work, because I think we're all family in this fight together.
Speaker 1:Thank you, dr Ackerman. I just you know I I often hear from people they'll send me messages or when I'm actually diagnosing in the clinic, whether it's you know, a wide variety of topics. The first question is where can I learn more, where can I get resources? And the fact that you and your wife have created this one stop shop where people, whether you're a caregiver, whether you're just trying to know more, it's all there. It's a lovely collection of not only information and resources but patient stories, and I think that is something that we have to continue to really invest in, because when you can hear or see someone who has gone through something similar or who is going through something similar to your loved one or yourself, it really puts a new light, a new perspective and allows you to kind of okay, I'm going to create this roadmap for myself and also helps you, you know, pivot away from things that could have, that weren't successful for other people.
Speaker 1:And so I think there's an opportunity to really advance health equity by by sharing this type of information, creating this type of information in our work, you know, to advance health equity, and so I encourage everyone to reach out to Dr Ackerman, and he prefers the he always says Sharon's son, george, but I still wanted to give him credit for his PhD. But his love, his passion for this disease is helpful and you can see it through his website. So I encourage everyone to check out his website because he is reaching thousands of individuals across the country for Parkinson's disease awareness and, like he mentioned, you'll be able to hear interviews from different individuals, caregivers and Parkinson's warriors as well. So, in closing, I would love just for you to share a couple of words that you would like people to think about. So, dr George, please share with one more time how people can get in connected with you, and just some parting words.
Speaker 2:I still learn every day, even while we're sitting here. I thought of an idea and I'll probably have to leave. I'll probably follow up. But I might add a section about research, because I've been reading the book on Parkinson's disease. There's some incredible experts in the world and maybe I'll put their bios and so you know, every time I meet the one and you're to me an expert.
Speaker 2:But I wouldn't be who I am today or have what I am without my mother. She was my best friend. Sometimes it's hard to even talk about like we spoke and joke that I'm like I said. I'm a lawyer and a police officer, a professor. I've talked in front of thousands of people with no shame and I have no. I like talking, but when I talk about my mother sometimes it's not easy, still even four years later. So I imagine that'll probably stay forever. We used to talk 10 times a day. I'm just. I was like a mama's boy which I miss, and you know, it's just. I was lucky to have her for all that time.
Speaker 2:I feel if someone had fought, or more people, and we all joined together, like other diseases and, unfortunately, things like COVID. Obviously this might not be a cure, but there are methods to make people feel better, you know, get through tougher situation better. And again, I owe everything, even this conversation, to my mother, because she might not be with us physically but she's still always with me and, you know, drives me to help others. Again, I want to thank you and your listeners for the time today. It's really an honor and again, I just don't know what I'd do without all of you, because you I still want you know there is hope and there's someone named me, sharon sent George, who's not going to stop fighting, and that there are people like us out there who sent our love and support and we want nothing in return. And again, thank you all.
Speaker 1:Thank you. It was a pleasure to connect and I'll just share with everyone. You know Dr George reached out via LinkedIn. We did not know each other and again, the note that he wrote was so powerful and touching that I knew I wanted to learn more, because I could see that his love and dedication to raising awareness was really wanting to give back and that synergy, it really connected to my soul, because a lot of you know, the work that I have privileged to be able to do every day is lands from my father and he recently passed away. But I, his memory, his love, his drive of standing up and helping others, is something that I am so grateful to have a part of my fabric in hopes that I can help others. So this synergy, this connection, was meant to happen. I'm just so in awe of the work that you're putting forward. So thank you, as always, to everyone who took the time to listen. I am grateful.
Speaker 1:This is Dr BC W. Thank you for watching Beyond Clinical Walls. Don't forget to subscribe and turn on notifications so you don't miss my next upload, and if you found this information helpful, please hit the thumbs up. It really helps the channel, as always. Thanks for watching and thank you for your support.