Together For Sharon: George Ackerman’s Story of Love and Advocacy

In this episode, George Ackerman, also known as “Sharon's son George”, shares his deeply personal journey of caring for his mother, who battled Parkinson's disease.

He lost his mother, Sharon Riff Ackerman, on 1/1/2020 due to Parkinson's Disease. To honor his mother and continue helping in the Parkinson's awareness cause, George started TogetherForSharon® as a family initiative to keep Sharon Riff Ackerman's memory alive and to spread the message of Parkinson's Awareness and hope for a cure. Today, https://www.togetherforsharon.com/ reaches thousands across the country for PD Awareness. 

George discussed the importance of early diagnosis, noting the Michael J. Fox Foundation's progress in identifying a biomarker for Parkinson's. He hopes this research will lead to a simple blood test for early detection, which could significantly impact treatment and quality of life.

The conversation also touched on the emotional toll of caregiving and advocacy. George shared how his mother's hallucinations and delusions added to the difficulty of her care, ultimately leading to heartbreaking moments. Despite the challenges, he continues to fight in her memory, advocating for better support and awareness for those affected by Parkinson's.

He highlighted the importance of self-care for caregivers, acknowledging his own struggles with balancing advocacy and personal well-being. George's story underscores the necessity of community support and the power of collective voices in the fight against Parkinson's.


George remains dedicated to his mission, driven by his mother's memory and the desire to prevent others from feeling alone in their journey. His advocacy extends to supporting the National Plan to End Parkinson's Disease, urging listeners to reach out to their senators for support.

George is on a mission, and nothing will stop him until there is a cure. Join him and share in the mission toward a cure at https://w

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These shirts are designed for those of us who believe in open, honest conversations about death, dying, and grief. 

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Transcript

[00:00:00] George: That's really why I do this today. I don't want anyone to ever think they're alone. I fight today in my mother's memory, but for all those diagnosed and the families still fighting and battling this horrible disease. 

[00:00:11] Jill: Welcome back to Seeing Death Clearly. I'm your host, Jill McClennen, a death doula and end of life coach.

[00:00:17] Here on my show, I have conversations with guests that explore the topics of death, dying, grief, and life itself. My goal is to create a space where you can challenge the ideas you might already have about these subjects. I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true.

[00:00:36] In this episode, I welcome George Ackerman, also known as Sharon's son George, to discuss his journey of caring for his mother with Parkinson's disease. George shares his experience as a caregiver, the emotional toll that it took, and his transition to becoming a passionate advocate for Parkinson's awareness.

[00:00:57] He highlights the variability of Parkinson's symptoms, the importance of early diagnosis, and the promising research currently happening. George also discusses the necessity of self-care for caregivers and the power of community support. Through his website together for Sharon, he connects with people worldwide, sharing stories and raising awareness.

[00:01:19] Thank you for joining us for this conversation. Welcome to the podcast, George. Thank you so much for coming on. I know that your story is a kind of sad one. You got into this. because of your mother. So I do want to hear all about your mother and the movement that you've really done to bring awareness to Parkinson's, because I actually don't know that much about Parkinson's.

[00:01:41] I definitely want to hear more about it and the work that you do, but why don't you just start us off? Just tell us a little bit about you, where you're from, if you want to share, anything like that. 

[00:01:50] George: All right, first I want to thank you and your listeners. That means the world to me to be able to talk. Uh, I really admire you and your work, especially the name of the show, literally, because I think that there's not even enough awareness for the end of life, for death with dignity, for some important topics.

[00:02:06] And I'm a believer if you don't tackle those tough topics, we'll never come closer to some important resolution. Hopefully we'll get to that. But even from a will to the end of life type situation that can actually help save people you. So much grief, even more than just the loss. So anyway, my name, as you said, I go by Sharon, son, George was because, uh, all this is just in memory of my mother.

[00:02:28] I wish I didn't have to be here. We're here for Parkinson's awareness. My mother was my best friend. She passed on one, one, 2020 sadly, and I became her caregiver the last four years of her life. Going back more in history, which is why I'm really excited. Just a week ago, we released a book because it really goes much more into it because we never will have that time.

[00:02:49] But my mother was a school teacher. She had a master's degree and she really gave up her life and sacrifice. To really take care of me and my brother. And I knew that the time she needed me, that I would sacrifice the same for her in a moment. I don't feel I'd be the man I am today if it wasn't for her.

[00:03:06] And she raised me on my feet pretty well, because that's what we do today. I don't accept money. We don't want anything. We just want people to know that they're never alone and that you have a voice in me fighting for their behalf. So it's very important and I'm grateful to be here with you today. 

[00:03:22] Jill: Well, thank you so much for coming on because it is nice to talk to people that have a similar mission to mine, which is just normalize some of the more difficult things in life that we need to talk about them.

[00:03:35] Avoiding them is not going to prevent it from happening to us. I appreciate you coming on the show, taking your time. I'm really sorry to hear about your mother. As a mother myself, I know how hard it would be on my son and my daughter if they were to have to care for me at the end of life and to have me die before old age, before it seems natural, right?

[00:04:01] When you were giving for your mother, was that a full time thing for you? Because again, I don't really know that much about Parkinson's other than I know that it's a really difficult thing. Illness. It's something that requires a lot of care. What did that experience look like for you? 

[00:04:18] George: Going backward a little, my background is I became an attorney in Florida and Washington, D.

[00:04:22] C., and then I became a police officer, which my mother didn't like. It was dangerous. And then I did my Ph. D. in criminal justice, so I'm not a medical doctor. And they talk about experiences that we've gone through. Parkinson's is difficult because it treats everyone differently, but it doesn't discriminate.

[00:04:38] It reaches 1 million people in the U S and 10 million throughout the world. Two years ago, I decided it's not just about my mother and me anymore. It's about everybody. I do feel like we're a family and despite even coming on today, we just reach one person and we've changed the world for the better. And now I'm learning that even if I teach you a little, that's important.

[00:04:56] So Parkinson's unfortunately is a neurodegenerative disease. It's one of the fastest growing in the world. What it does is, uh, with my mother, she had it for about 15 years. We don't know if she. Wasn't aware how quickly it could progress, or she didn't want to burden the family, which is her, that's how my mother was.

[00:05:14] So she didn't tell me enough early enough. I only became really involved the last four years. I actually heard of the word Parkinson. I didn't know what it was either for several years. She was still able for those beginning years to live independently. You had her own home. She shopped herself. She saw her friends.

[00:05:30] She lived life like anyone would. She had stiffness. The last year before I took over her life to help as a caregiver in her left arm. So she had trouble, didn't cripple her to be able to live independently. But then when the disease caught up, she also had dystonia, which is the curling of the toes, which you don't, you know, it's like involuntary.

[00:05:50] She had more internal tremors. Mr. Michael J. Fox, a famous actor has external tremors. Also things like rigidity, bradykinesia. And also the biggest one is just a stiffness, but almost like your brain to walk. But your body won't continue and actually do the movement. And that's what cripples people from being able to have a career anymore.

[00:06:10] A lot of people don't want to talk about it. Don't want to advocate just because it's heartbreaking. But I'm the opposite. I feel my mother lost 15 years of her life and 15 years after. So I feel like she's taken too soon. And that's why I fight today. She was only 69 when she passed, which is way too young.

[00:06:27] And that's some of the journey. But. I took over on one night that I'll never forget, which we write about in the book. She tried everything. We did everything. We have 15 medical experts. Everyone said, you don't die of Parkinson's, you die with it, which was a problem because we didn't know what the future brought.

[00:06:42] We didn't think it would be an end of life issue because Florida doesn't, doesn't recognize Parkinson's as end of life. My mother had no other medical issues really ever. She went from walking three miles a week. The cane for two years, then to the walker for a year, then a wheelchair and then bed bound.

[00:06:59] In the last seven days, I wrote a chapter on it in the book. It was the toughest because for seven days, again, we didn't know she was going to pass away, but she had a heartbeat and nothing else, like she didn't exist. And in Florida, we don't have yet the Death with Dignity Act. And we treat our animals better than our loved ones, which is shockingly sad.

[00:07:15] So the fourth year before she passed, when I took over, she went from Parkinson's trial and again, I don't get upset. Some people might in my friend, but I don't hit the doctors cause they're just trying their best. I'm mad and I hate the disease. She came home and at 4 a. m. I got a call to rush over to her home, which I don't think anyone could prepare for, and I found her, again, in a horrible moment, moving her furniture out of her home.

[00:07:38] So I asked her what's going on. She said she thinks that Nazis inside her home and they're gonna harm her. So I rushed her to the emergency room and they said I saved her life because it was some kind of reaction. I think they might have changed her medicine too drastically, but that night she was never the same and that wasn't even the worst of it.

[00:07:55] That was just one, it was almost like a horror movie just starting chapter one in my life at that moment. The next four years, I brought her to the hospital. She was okay. I went back to get her some clothes because they wanted to watch over her for a week. And when I got to her house, the whole room was surrounded with post it notes, like the movie A Beautiful Mind, and she had written names of animals and people who are not actually there anymore.

[00:08:17] It's at some point she had late onset dementia, and hallucinations and delusions wouldn't allow her to understand or appreciate. Who is in reality there at some points and who wasn't, and that was like really more heartbreaking than anything. And that's when I decided I had to take over her life and help her.

[00:08:36] And I didn't want her to be able to feel alone. That's really why I do this today. I don't want anyone in your listeners to ever think they're alone because even though it's too late for our family, it's not for so many more and I fight today and my mother's memory, but for all those diagnosed and the family is still fighting and battling this horrible disease.

[00:08:53] Jill: Is the dementia related to Parkinson's? Is that something that people with Parkinson's tend to also get as a symptom of Parkinson's, or were they totally not related? 

[00:09:03] George: Yeah, Parkinson's is very hard and doesn't have a cure because it's so different in every person. Not everyone will have dementia, so that would be a no.

[00:09:11] But unfortunately, she did. There are also different signs from each. A lot of people have Parkinson's. Share a lot of the similarities, but it's so difficult because everyone's so unique. That's why there's no cure Even if you go to a medical doctor, there's no actual test for Parkinson's What they do is test for other diseases and then they kind of narrow it down and say, oh here you go You got Parkinson's actually last year of the Michael J Fox Foundation and their research raised over two billion million two billion dollars And they found a biomarker where you can actually have a needle in your spine, which I don't think many people still want.

[00:09:45] And it'll determine if you have Parkinson's. But the good thing is they're working now to take that technology and breakthrough medicine and move it to helping to get a regular normal blood test. And if we could have that in every doctor's office in the next decade, it'll change the world because early diagnosis is critical.

[00:10:01] Not being misdiagnosed is critical. And understanding the disease is important because we don't have a cure, but you can slow the progression in many people. I think it was too late for my mother, but it's a neurodegenerative disease. And now we found out if you do 45 minutes of exercise a day, it can slow the progression.

[00:10:17] And there's just so much information out there that's kind of scattered all over the place. So that's why I started togetherfishiron. com. It was really, I started remembering my mother to remember our journey, but then I decided it's again, not about just us. I interview 600 people around the world, from Africa to England to Spain to France to Iceland, Australia, Nova Scotia, I mean, Parkinson's, unfortunately, is everywhere.

[00:10:41] And until it's not, I'm going to keep fighting until we have a cure. 

[00:10:44] Jill: And you recently met Michael J. Fox, didn't you? 

[00:10:47] George: I had an honor. We're actually traveling to New York City for the Michael J. Fox Foundation's Unity Walk, where everybody, once a year, it's the 30th anniversary. I've never been. It'll be a great day.

[00:10:56] Story and meet some incredible people, but it's in central park and we're just going to walk in memory of my mother. But a lot of work I do is virtual. This month happens to be Parkinson's awareness month of April. We've done a lot of events and I'm kind of burning myself out, but every time I want to give up or quit or have my own pain, I think of all those still fighting battling, and I don't want anyone to go through what our family did at the beginning of the month.

[00:11:19] We had, we're at the Michael J. Fox foundation IQ. It was a community event, South Florida. And we went to the Parkinson's Foundation Walk, which is called Moving Day. And last week I did the American Parkinson's Disease Association Symposium. This was the final event. Now I don't think that Parkinson's Awareness Month is over for me, and it certainly isn't for all those battling.

[00:11:41] I know I always say my slogan is, Parkinson's disease doesn't take a break. So why should I? But one lesson in my book, I try to teach caregivers and those battling it, you have to take care of yourself or you'll be no good to others. Even saying that as a caregiver and as an advocate, I don't follow it. I am honest and I'm like a lie because I feel like if I take a break or let's say we didn't eat today because of scheduling, then we might have missed one person out there who might feel wrong.

[00:12:06] Now they see us and please everyone listening, share this. I support the show. I'm going to share it on my website forever. I feel we're a family and let's fight for a cure. I might just be one son, one voice, one individual who lost his best friend, his mother, but together our voices are just so much stronger.

[00:12:22] Jill: That's so true. And I will for sure, and all my listeners know, all the links are going to be in the show notes, so your website, your book, all that. Anything we talked about today, people can easily find in the show notes. So I'm for sure going to do that. But, you know, it's so important to care for yourself.

[00:12:41] I know you're saying it and you don't always do it. And I'm guilty myself of sometimes knowing better. But for caregivers out there listening, it really is. It's important that you take care of yourself because if you burn out, if you get sick as well, you're not going to be able to care for the person that you are taking care of.

[00:13:00] And I know it can feel selfish. A lot of times it's like, well, I'm here to take care of this person, or even in your case, like I'm here to spread this message. And for sure, but also you need to take care of yourself. So make sure you take some time to take care of yourself and do something just for you that you enjoy.

[00:13:18] George: Thank you. The reason I really wanted to be with you today is the story of your show and the name of the show because I'm still grieving even four years later. Speaking to you helps me and also meeting those individuals in the community, writing the book and just every day a new journey shows up out of the 600 on my website.

[00:13:36] Everything's completely free. We do not accept money. You send me a penny, I'll send it back to you. Even though that'll cost a lot of stamps, but that's not why we do this. I don't like when people say, it'll get better, but I don't think it does. I just don't want her memory to be forgotten. Selfishly, I have like a guy on both sides.

[00:13:53] You ever see the cartoons where the good and the bad One is saying it's better she's not here in a way because she was suffering. The other one is saying, no, I wish she was with me. There's so many moments like family gatherings or holidays that are very, very difficult. And it's even hard sometimes. I'm six, two, well, a fortune, 200 pounds.

[00:14:11] I'm a mama's boy. I'm proud of it. And some days I was. Do speeches like this or talk for several hours and I'm fine. But then I go to the next room in the office and I'm lucky to have my wife, who's been an incredible support of my children, but I'll fall apart and just tears because it's still the only way to say it is it sucks.

[00:14:28] Jill: Yeah, it does suck. The. Reality is both things can be true that you could be glad that she's not here and in pain and suffering anymore while also really missing her. The biggest thing is really you just wish she didn't have the illness at all, right? Like we never want to watch our loved ones suffer, especially when it's something that We can't help, we can't do anything to really take them out of that suffering as much as we want to, as much as we try, we can't relieve the suffering.

[00:14:58] I hope that that will never be the experience that my children will have to go through with me, but we don't know for sure, right? We don't know what's coming for us. And the idea of early diagnosis of a lot of these illnesses. I find especially in our country with, I don't know whether it's lifestyle, lack of good health insurance for a lot of people, how many of us just say, Oh, whatever this thing is, something weird's happening, but like, I'm not going to go to the doctor for it.

[00:15:25] I'm not going to worry about it. And then by the time that we go to the doctor, then it's kind of like, Oh, well, you should have come to me months ago, years ago, we would have had better options on how to treat it. Right. Thank you. But a lot of us do wait for a lot of different reasons. 

[00:15:40] George: And I think that this show is important because we have a middle, beginning, and end of life, and nobody ever wants to ignore the end of life.

[00:15:46] And I actually thought of, we have our own podcast that's more on Parkinson's, but maybe someday we'll show him together. I think we need more shows that grief. I think that there's not enough things for grief out there. And it's more important really than life at times or beginning, because this is, uh, Something at the plan for I was lucky in a way, cause my mother was so responsible.

[00:16:06] She had me with her. We did a will, even as an attorney, I had another attorney do the will. I didn't do it. I was a power of attorney. I mean, she had the whole funeral plan. Obviously that was more for her future. We didn't know what it was going to be due to this disease, but there's just so many tough topics that really have more people need to shed light.

[00:16:23] Not just on Parkinson's awareness, but also on this area. And actually the book helps because I go much more into the, the Good to bad and the ugly and if you don't mind, I have a few sentences on the last year of her life. I kept the journal. I also kept video and pictures, but I'll never share those because I don't want her to be remembered like that.

[00:16:40] But I did write a journal of what I was going through and it takes you really into it. And this is good for the grief bar, but on September 28th, which was actually her birthday, 2019. Today, I realized I won't be able to speak to my mother on the phone any longer. Visa talk eight. To 10 times a day, a night, and I did so for almost my entire life, even in my outlook, I knew she would always be there for me and I could count on her.

[00:17:04] And when she couldn't speak or respond anymore, it was heartbreaking. And that's just one passage from what it was like, but I can't even sometimes say that anymore. But sometimes I tell people to skip that chapter too, because it's not easy, but takes you through the last year, like literally day by day of what I was dealing with from my mother's point of view, from mine, whether it was caregivers we had over to try and help her when I couldn't be there, she had the hallucination, we had to fire like 20.

[00:17:30] Companies, 16 aides, and I just wanted a person there so she wouldn't fall. None of these people were trained. They didn't even know what Parkinson's was, but I just didn't want her to fall because I knew that would be another issue. She went from being independent and living alone to strangers coming in and out, men with hallucinations, and she thought they were harming her.

[00:17:47] And I would get frantic calls 24 7. One time called the police. We had to remove her phone. I'm a police officer. She had a gun. I had to remove the gun because nothing happened, but who knows what can happen. It was just like an ongoing. battle internally, and that's, uh, you know, very, very difficult for her, for me, for both of us.

[00:18:06] And it was really just us at the end of the day. I didn't have a lot of people, but we have family, but they couldn't really be there like I was. And some days I wish I wasn't, I wasn't me alone, but just how it felt. 

[00:18:19] Jill: You bring up some good points too, about the passage that you read, where Especially when we're dealing with an illness that is extended over a period of time.

[00:18:29] There's so many losses. Before we actually get to the death of the loved one. And so all of those moments of realizing that They're not the person that they used to be that there's not going to be the phone calls anymore. That's grief That's really a hard thing to sit with and say, okay, they're still here physically but a lot of

[00:18:55] George: And we don't always have the time because I really talk a lot more about my mother because it's about her, but the book is nice. I didn't even want to do a book, but I just wanted her journey out there. But it really goes into the first signs of Parkinson's symptoms, my caregiving, my support for my wife and children.

[00:19:10] That's a whole nother hour of talk about my children because they didn't even understand what was happening to their grandmother. There's a lot of positive things From the grief though, like it's not just the sad look, it's a lot of positive and I always say there's a lot of light at the tunnel of darkness and met some incredible people like you, your audience, and all those still fighters.

[00:19:28] I call them warriors, sparking some warriors out there. They inspire me every day and also family and friends. Actually, one chapter is about yeah, All her friends wrote little messages and what they thought of Parkinson's and how they were shocked when they found out. And some of them read it. And now I can tell you it's written to me and said they didn't realize, and they wrote an Amazon review and one of her best friends said she didn't even realize what my mother went through until now, you know, it's important to get the story and the journey out so other people can learn.

[00:19:56] One chapter I'm proud of is advocacy and mission forward, because it's my own journey, a new one, a mission of advocacy and really, uh, doing all these events. Great on a trip. Demi donation. I don't want anything, but it's not easy from the money to the time. Some days you talk about grief. I feel like even maybe today, I feel like laying down after this talk and just feel like a truck rolled over me because I just probably do too much and I don't want to stop because like I said, if we just reach one person who feels alone or grieving, maybe a loved one who lost somebody from Parkinson's and now they listen to this show and realize they're not alone, that's what helps me keep fighting.

[00:20:34] Jill: And it sounds like your book's a great resource for people that aren't just dealing with Parkinson's. But if you talk about the family support and about hiring caregivers and all of these things that all of us are probably going to have to deal with it at some point for our loved one. And it is something that it's a whole new world for most of us.

[00:20:55] There's no trainings. Well, actually I shouldn't say that. There's probably some trainings out there that if you wanted to take a training on how to be a home caregiver, you could. But most of us, when we have to become a caregiver for a loved one, it's just kind of like the doctors send them home. And it's like, hey, Here's your person.

[00:21:12] Now you need to take care of them. And there's medical equipment, and there's medications, and there's hallucinations, and there's all these things that we need to learn how to deal with. And you're right that it feels so lonely. So much of our family and friends, they don't know how to help us. They can't really help us because so much of it is so personal.

[00:21:33] It's just that day to day. It's those middle of the night wake ups. It's like all the things that. Everybody else is not around for and so we just can feel so alone. And then when you try to talk to friends and family, whether it's discomfort or whatever it is, there's not a lot of. helpful discussion sometimes.

[00:21:54] Some of it is just kind of like, Oh, it'll be okay. You'll be fine. Everything will be fine. Well, okay, yeah, maybe in the long run, but it's not fine right now. And so that's why I think having these discussion and having your book out into the world can really help people not feel so alone, help them know what they need to do to better prepare.

[00:22:14] For a really difficult situation, I also like to think of it as a gift that we give our loved ones to be able to care for them, especially like you said, your mom, like she cared for you and your brother, that's the way that I feel too with when I took care of my grandmother at the end of her life, like she cared for me, it felt like a gift to be able to do the same for her, I just wish I knew better what I needed to do and what the experience was going to be like because it wasn't what I expected because I just based it off of what you see in movies or TV, which is not real.

[00:22:51] George: Yeah, well, I don't think if we had it over again, the one thing I'm proud of is that I don't regret anything. There's nothing else except for a cure we could have done. We tried everything back then. We didn't have podcasts really. And the technology, I wish I had a show with my mother before Parkinson's.

[00:23:06] And that would have been a beautiful thing to have today to remember, you know, cause Parkinson's doesn't define you. It takes a lot from people, takes loved ones, it takes lives. But I would have loved, that's the one regret I wish I could have done, but we wouldn't have had it. technology then, but now I find myself shifting.

[00:23:22] The first book is in memory of my mother, but for those people struggling in any disease and those family members, but I do find myself today. I'm not diagnosed with Parkinson's and I'm no longer a caregiver of someone alive. So. I'm in like the C category and I've actually been treated sadly, badly at some point because I'm left out, I feel, of the conversation.

[00:23:42] There's probably 10 million or more people who lost a loved one due to Parkinson's and I love them all, all these great organizations. They really do want to cure, which is fine, but they completely forget, in my view, in my experience, the people who have lost loved ones due to Parkinson's. The next new book I actually finished, I'm not going to put out for a while, but it's We added a section on together for Sean, both in memory and it's trying to find people or loved ones who are still fighting and want their loved ones memory to be remembered because I find that in my experience that our loved ones still matter and our voices still count, but I still don't see as much, even with this bill that just passed, it's incredible.

[00:24:20] The national plan, Dan Parkinson's disease just passed the United States house last year. December cutting to the Senate this year and next. So everyone, you and your viewers can actually reach out, please, to your senators and urge them to support the national plan to end Parkinson's disease. The first bill in us history that will help fund financial aid from the government for Parkinson's research.

[00:24:41] I love it. I'm a supporter, but there's not even a section which I wish they would add. And that's what my other book will be about. To dedicate to people like me for grieving and who lost a loved one. A lot of people with Parkinson's, they were taught and we were too, that you don't die of Parkinson's, you die with it.

[00:24:56] As you can see, there's many stories that that's not always true. Now, whether my mother passed due to Parkinson's or all the side effects of the medicine, that's fine. I'm not here to argue, but obviously we lost her because of it, due to it. And that's a lot of people. This is why the show is important.

[00:25:11] Some people who have Parkinson's and our family members don't want to have the word except. That they could end their life. They just kind of, in my opinion, this could be controversial. They don't want to, they put it off. Like even the other day, I was at a lecture symposium and the person on the panel said, there was a husband and wife.

[00:25:28] They said, they don't die apart, they die with it. And I'm sitting there thinking, you don't know my journey, my mother's story, but they might not want to know it because it's, again, they don't want to realize, except the grief and the future and the death. So it's a very interesting struggle I find myself still going through and that's why I'm so honored that a lot of the Parkinson's community did open their arms wide to me.

[00:25:50] But I started together to share and it's almost like become its own world. Like you mentioned, I take a movement. I don't need to rely on other people. I feel we'd have three people see the website. We've had over 40, 000, which to me is like tremendous. I mean, it's not a lot, I guess. I'm on every social media, which I don't know why.

[00:26:05] It's all just me. It means a lot to me that we end this disease and I'll keep fighting along your side until we do sonic here. 

[00:26:13] Jill: Yeah. And the idea that only 40, 000 people have seen it, but you have to think too of the ripple effect that that has that those 40, 000 people, it impacts the people that are around them.

[00:26:27] And over time, more and more people will find it. And it is important information to have out there. And what is the typical amount of time? Is there a typical amount of time, like, from diagnosis that people live with? Because I feel like Michael J. Fox has lived with it a really long time. But that doesn't seem to be the norm.

[00:26:47] Or maybe it is. I don't know. 

[00:26:49] George: Unfortunately, it's different for everyone, but there are five stages of Parkinson's, and the last is the toughest. It's the end stage. The first two, really, I believe you can have Parkinson's, but it doesn't affect your life where you have to kind of resign from work. One thing, the first one, symptoms at this stage are mild, do not often interfere with daily activity.

[00:27:10] There's no time frame that answers your question, I wish there was. Stage two, symptoms at this stage become worse, making daily activities more difficult. The person though still can look after themselves. Then we have stage three, symptoms are mid stage. More severe, but you could still be independent and here's where it gets tough and this is where the four years where I stepped in.

[00:27:31] Page four is independent living is almost impossible because a lot of activities like eating, bathing, dressing, sleeping, and walking are limited. And finally, stage five, it's so debilitating, so severe that they can't stand the individual on their own and that might be impossible. Some individuals end up like my mother being bedridden in a wheelchair.

[00:27:52] and can't even move around. And also that's where the delusions, hallucinations, loss of smell, constipation, which again we could do a whole show my mother's stomach was really destroyed from all this medicine, poor reasoning and memory, weight loss. My mother went from a healthy female at 50, 60 to the, uh, 70s.

[00:28:09] Almost pencil thin sleep disturbances. She never sleeps and I don't even, and then finally vision problems. So it wasn't again, just about the disease. It felt like I was a nail hammer. It was just like pounding me every day. Another thing, every time I tried to get the nail up at boom again, and it was something again, so tragic that I don't want anyone to ever have to go through it, but we're still seeing now more and more people having Parkinson's, or maybe they're not having it, but their loved one or the neighbor or a community member, a rabbi, a priest, a mailman, so it's more, it seems like it's just, I don't know if my work, I always say it's getting well known, or it's just a disease that's getting even more well known because so many people are now diagnosed.

[00:28:49] Jill: Yeah, and that's one of those questions too of, is it just that we're getting better at diagnosing things? Or is there more people that are? Getting it. I don't know. I feel like there's a lot of cancers that are kind of the same way where they're like Oh, we're seeing more and more people with it. Why is that?

[00:29:06] And I'm not a doctor I don't know the answer to it but it is something that probably all of us at some point are gonna have to go through with a loved one and Learning about the illnesses that our loved one gets diagnosed with is important, too I know you said it's hard because you couldn't predict timing wise and things like that, but understanding the symptoms, understanding the treatments, knowing what to kind of plan for and expect, and getting the information.

[00:29:35] But you're right, the information anymore, it's like you can Google things. And you'll get so much info that it's almost overwhelming. You don't always know what websites to trust, what is accurate information, but it is a full time job. Were you actually still working as a police officer when you were taking care of your mother?

[00:29:55] George: I'm still an attorney in my reserve, not for police. So I don't go as much cause of my back issues, but I'm also college professors. I teach around the world online. So it was good cause I could kind of work around helping her, but it was still a nightmare cause I still have my work, but I wanted her more important than my work.

[00:30:13] And my work suffered, but I was able to make it up and things, but just. So many things and now you're adding that too, which I didn't get to the work and the family. It was just a lot. I have three children. My mother, we put a room in my mother's home, actually moved her closer. So she'd be closer to us. I rush over a lot.

[00:30:30] And we put a room that was allowed to be a destruction and the children was called the kids room. So my mother went, even when she was in the wheelchair towards the end, she loved hearing them all screaming and playing. That was her favorite day. At the time, they were like, I think one was too young, two and seven, five, but that was their favorite time coloring with them and blowing bubbles in the backyard.

[00:30:51] And I once gave a speech and couldn't even get through that because I walked by my backyard now and I don't see that stuff. Some days I feel like showing the house we have cause we bought a bigger house. Sold my mother than she was supposed to move in with us. I don't know if it was better that she didn't.

[00:31:05] I don't think I could have handled that 24 7, even though I did help her 24 7. At least she was at her home having her here. She was screaming and upset or scared. It was tough. Now, I walked by the hall as a room. My mother-in-Law didn't, but it was really for my mother. So not easy, really any day. To even think back and then some days I think maybe I should stop it all, move on and worry about the family.

[00:31:28] My mother was funny. She would say, George, don't waste your time. Stay with your family. But she didn't raise me to do that. She raised me to help others. Before my career, I call it a career, but my time caregiving, I was an advocate and I still am. But my dissertation was aiding African American mothers through grief and the loss of a loved one due to crime.

[00:31:48] I sat with a group of mothers, African American in West Palm Beach, Florida, and tried to research. Why are you losing a loved one due to crime and their victims are not here, but the families become secondary victims and that they're forgotten by the criminal justice system. I always had a passion to advocate for victims of crime and their grief.

[00:32:06] And the only way they reintegrate themselves back into society is through community support. Spiritual and religious beliefs and that doesn't work for everyone, but that helped them. And that's devastating to lose someone, not just from a disease, but from crime. It's horrible. And then I kind of correlate that to what I do today because I show the Parkinson's community is often forgotten by society because we need more awareness.

[00:32:28] I wrote the 15 news stations. And not even one responded, I wrote to 15 celebrities and thankfully due to technology, I did. Kenny G was my favorite, my mother's favorite musician, the saxophone player. He wrote a song and played a message. It's on our website for her. Jack Osborne gave me a message because Ozzy Osbourne, famous musician, has Parkinson's.

[00:32:49] I met Janet Reno many years ago, and that's on the website. And I met Mr. Michael J. Fox a few months ago. So, you know, I've been able to reach a lot of people, but how much work to be done. 

[00:32:59] Jill: There is so much work to be done. And I know we're coming up on the end of our time. And I actually, you gave me a copy of your dissertation, because I know that was one of the things that when we first connected, we realized how many things we were really passionate about that we had in common.

[00:33:15] And that is something that I have learned is that the grief within the Black communities, especially with the women, is something that, you know, is unique to, um, the way that most of us have to deal with grief. And so that's something we could do a whole separate show on because that's a huge topic. I so appreciate you coming on today and why don't you just tell us where people can find you.

[00:33:41] I know we already talked about your website, but is there anything else you want to share with guests before we wrap it up? 

[00:33:46] George: I have a little message. I always share it. So this is to you and your audience. We love you. We support you and we care a lot about you and you're never alone. I will advocate for you along with your host here.

[00:33:57] Our voices are so much stronger and I'm just getting started because every day I meet. Somebody like you inspires me and your audience and the people still battling and their family members or people who lost a loved one due to Parkinson's. It inspires me just yesterday. I met a couple of the beautiful story.

[00:34:13] It's almost like a movie and they both have Parkinson's and they're getting married, but they both had Parkinson's. Deep brain stimulation, which is a major surgery in the brain for Parkinson's to control tremors. But just speaking to them lit my eyes up in my life, and I'm going to be talking to them in a podcast in the future.

[00:34:29] But the only journey that breaks my heart is the one I'm not aware of, and imagine how many people I'm aware of any of these, so please come to the website. There's no charge, no shark tank, but wait, there's more. It's all free and it's just inspiring. If you click on the interviews, you'll see the 600 people from around the world.

[00:34:47] Again, you're never alone. I'm grateful for your time. I don't think this is just about a talk and then goodbye. I think this is something important that could be a. Continuation because, uh, so much more, even not just Parkinson's that I think needs to be brought, I have a good friend. She lost her husband due to Alzheimer's, literally on the same day that I lost my mother due to Parkinson's and somehow magically we met.

[00:35:08] Her name's Betsy and she has a show too, but. We became like family over the years. And then we started a blog on the website. It's called tackling tough topics where we talk about grief and that's what dig so many topics. It could be itself a podcast, each one. And I just think that more needs to be done is I found you.

[00:35:25] Cause I looked up the word grief shows and really like maybe 10 in the whole world, there's not that many. And I think that's a big part. Problem when I see a problem, I don't just walk away. I fight and I try to bring that to everyone's attention. So you never know, maybe someday we'll have a show together, but I really enjoyed the time and I value your friendship, your care, and just urge everyone out there to please support you, the show and all you do, because it means the world to me and my family.

[00:35:51] So thank you. 

[00:35:52] Jill: Thank you. That was very touching. I do appreciate your time. Thank you so much, George, for coming on today. Thank you. In my next episode, I talk with Yvonne Caputo, who shares her insights on end of life planning, shaped by her experiences in a retirement community, and caring for her parents.

[00:36:11] Yvonne shares a story about her father, where a candid discussion around the five wishes document led to a precious and peaceful end of life experience. She emphasizes the importance of advanced directives and clear communication with loved ones to ensure that final wishes are respected. Join us as we explore how embracing end of life planning could lead to living a full and meaningful life.

[00:36:37] If you enjoyed this episode, please share it with a friend or family member who might find it interesting. Your support in spreading the podcast is greatly appreciated. Please consider subscribing on your favorite podcast platform and leaving a five star review. Your positive feedback helps recommend the podcast to others.

[00:36:53] The podcast also offers a paid subscription feature that allows you to financially support the show. Your contribution will help keep the podcast advertisement free. Whether your donation is large or small, every amount is valuable. I sincerely appreciate all of you for listening to the show and supporting me in any way you can.

[00:37:10] You can find a link in the show notes to subscribe to the paid monthly subscription, as well as a link to my Venmo. If you prefer to make a one time contribution, thank you. And I look forward to seeing you in next week's episode of seeing death clearly.