DR. GEORGE ACKERMAN, Ph.D., J.D., MBA: From Tragedy to Advocacy for Parkinson's Awareness

In Episode 83, Don and I had a heartfelt and informative conversation with Dr. George Ackerman who started the movement Together for Sharon to honor his late mother Sharon Riff Ackerman, who succumbed to complications from Parkinson's Disease and Alzheimer's Disease on January 1, 2020. George is an absolutely  tireless #advocate for those who suffer with PD and their families and has an unending hope for a cure. Come join us and learn about this important movement and why this is so important to George and his family.

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Love Conquers Alz!
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If someone you love experienced neglect in a nursing home…Then you know how desperately the system needs to change.  History has shown us that It takes people power to change anything worthwhile. That’s why we we’re launching something that’s never been done before. On September 27, communities across the country are coming together for the first-ever National Long-Term Care Reform Day.This is a peaceful national walk for dignity, accountability, and change in long-term care.We’r

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When the world has gotcha down, and Alzheimer's sucks, it's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is love conquers all is a real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now, here are your hosts Susie singer, Carter, and me, Don Priess Hello, I'm Susie Singer Carter. And I'm Don Priess. And this is Love Conquers Alz. Hello, Susan. Hello, Donald. I've lost my brain. It's gone. I think right now. In fact, if we can get through this episode without I'm really exploding. I, I think it's a win. Win to Yeah, we are. We are we are. We're seeing the light at the end of the tunnel on our plot on our documentary, No Country for Old people. We are. We've been working so hard, which is why we haven't had you know, our signature two episodes, a month of love conquers all, because we literally couldn't, we can't. So we have to really pare down over the last couple months, and probably the next few coming months, you know, but But nevertheless, we're still here. And we're still so happy that you've joined us and that you're listening to us and that you, you continue to support because I think that you know, I'll be it. There's a lot of podcasts to listen to, and especially now during you know, with care in the caregiving arena, but I think all of everybody's brings something different. And I hope that you know, we bring something that's a little more, you know, positive and a better as aspect in a way to distinguish signify distinct destigmatize, let's try that again. Thank you. awaited sting. Our first fix air first explosion, yeah, boom, there. This is what happens on no sleep. So yeah. And then we just we really want to be able to do that not just for Alzheimer's, but for, you know, all diseases that we as caregivers have to deal with. Because at the end of the day, we are we're doing the same thing. It doesn't matter whether it's Alzheimer's, whether it's it's, you know, M.S. Or ALS or, or Parkinson's, like our guests today, right, done. Absolutely. Yeah. And it is because there are similarities. I think no matter what the disease is, and sometimes it's a physical sometimes it's a mental sometimes it's combination there of there's going to be consistencies that we as caregivers all need to share with each other. And that's why we're here. And you know, but just just to you know, anything new going on in life I know there's been some exciting things with your daughter's recently that you've you've experienced because they but we just saw them perform recently both of them in different venues. It was amazing. Oh, they're following in my footsteps. There's That's so wrong. But my my younger daughter performed with with with her group and did a tribute to a song that I recorded with Chuck Lorre, the Chuck Lorre of, of of, you know sitcom fame, who was producing me as, as a teenager in a group called two chicks. And, and my daughter was very much a you know, it's very retro now it's it was an 80s video song called Bad Dreams in Hollywood. And they did a tribute to it. It was phenomenal. I felt so old. But it was yeah, it was really fun. It was fun to hear them and they were just like everybody coming up oh my god that we saw the video were like love edits, like sick roll, and he just feel you feel like you know, very, very honored. It was very honored and yeah, that's it. My daughter and my other daughter just did a an incredible chorale for Christmas, a Christmas concert here in Los Angeles, which was phenomenal. She's got a voice like an angel, like my mom's and I'm just very proud I cried like my like my mom used to always say, Mom, why are you crying now? I know I cry. So anyway, but let's let's introduce our guests today. I think we can do that. Today. Our guest is Dr. George Ackerman and he dedicates himself to law, policing and education. But on the first day of the year 2020 Dr. Ackerman faced the loss of his beloved mother, Sharon Rifaximin. Due to the relentless progression of Parkinson's disease, in honor of his mother's memory and to contribute meaningfully to the Parkinson's awareness movement together for Sharon was conceived. It's a heartfelt initiative founded not only to preserve the cherished memory of his mother, but also to shine a light and further to the message on Parkinson's awareness. And the ongoing hope for a cure together for sharon.com now extends its reach across the nation becoming a beacon of awareness for Parkinson's disease. And he is here today to bring that message to us. So let's welcome Dr. George Ackerman. Hello, George. I thank both of you and all your viewers for your time, and the dogs and their party I show. Actually, if you go to that website together for sharon.com and scroll down, you'll see our little yellow. Bella the love we call the love doodle, but it's a little mascot. It's perfect. Oh my gosh, what kind of dog? Is she? The golden doodle? Oh my oh my god. Just the best. Oh my god, I love Yep. You can't have better listen, it's so great to have you here. We finally did it, George. And, you know, like I was saying in the intro about caregivers in it. And I thought, you know, because you think why? Our show is love conquers all is but I don't think that matters. Because when I when I learned your story, and and, you know the story of of Your beloved Mother, Sharon, and I feel I felt such a Kismet to you because I felt like I've gone through such a similar journey, although the details might be different. But the emotional journey is the same. And my mom was my favorite person in the whole world, too. And so I totally understand. I understand that loss, and, and the frustration of not being able to fix the problem. And so how to lean into it, which is what you did, and and the end and to continue to honor your mother is just a beautiful thing. Right. And I love that. And that's what I hope that I'm doing with this show. And with all of the projects that I've done, you know, to to, to make sense of what they've gone through. And so can you tell us for the eyes about a little bit about how this all started for you, I believe it was a long journey like mine. Sorry to hear about your loss to like I said, I My dream is to have a cure someday for all these diseases. I found myself really a sense of being alone when it happened. You don't train or plan for being a caretaker, especially when your mother or any loved ones your best friend, I mean, I spoke to her about 10 to 10 times a day. And I might be six, two and 200 pounds law enforcement. But I become a softy when I'm with my mother are talking about her. But it started about 15 years before to 2020 she had Parkinson's but she was a type of independent woman who didn't want to tell anyone else about her issues, which is kind of sad, because I wish she did and not that we could have done anything different that maybe we could have treated her a little better. But she I found out. So for many years, like several, she lived a normal independent life she lived on her own, she drove she shot. But she had a little loss of her ability to use her left arm like a stiffness. And so we were able to still all kind of live without any huge life challenges. And her struggles are continued. And she kind of hit them, which was another issue for another podcast that I wish we would talk about, about how people might not want to share you know their diagnosis with individuals or maybe don't want to talk about it because in a sad way, they're ashamed. But they have to realize that they have love and support, and that we're all here together to help fight any of the diseases. So to fast forward a little to 2021 120 20 She passed. But the last two, three years were very tough. The last seven days or something I can never even describe to you. She didn't really live she just had a heartbeat. Florida where I'm located doesn't have the Death with Dignity Act. So basically the last three years it was just like, as a human being or a loved one. I felt there was just one thing after another to every time I thought of an idea that maybe it could help it just got crushed and destroyed and then it was just felt like building blocks like you're walking up the steps and you keep going backwards. That's kind of what happened her health deteriorated. They say there's five stages of Parkinson's the fifth was really the worst. But again, people are rare thing with Parkinson's is everybody's so different. So what happened to our journey doesn't mean long. will happen to someone else's. Michael J. Fox has the external tremors but my mother didn't. She had more internal than the dementia, hallucinations and the delusions all set in. And that was something out of like a horror movie. I'm so sorry. I'm so sorry. And I know what that the creeping up of that disease could feel like because my mom also had Alzheimer's and was for 16 years and was diagnosed with mild, mild cognitive impairment. And of course, you know, I stepped in like the superhero and said, We're gonna fix this, we're gonna get this mom, other people's have haven't, but we are we're gonna get this, you know, and then you start realizing it's bigger than you. And you don't know a thing about it. Because why would why would we write? Why would you know anything about Parkinson's? I mean, unless you're thrown into it, it's not something that you're going to spend time in your life on. And I like what you just said about, you know, the fact that that your mom tried to to underplay what was going on, and not speak about it. Because, as did my mom, and as do a lot of people with with, you know, progressive diseases that it feels to me, and I'd love to hear your perspective on it, it feels to me that my mom needed to do that, you know, and it was survival for her because while she was still fairly cognizant, and copious medicine, really, you know, functioning in the world to admit to that would be, would diminish the life that she was having at that time. And it would put a lot of stress on her in terms of the dignity like you just said, right. And, and, and I also, and I'm gonna let you take the floor, but I just setting this up for us. I also felt like I needed to protect her dignity, which now in retrospect, I realized that was me protecting me. I was excited to join you today. Because one thing you mentioned is, unless you have Parkinson's, or some of these illnesses, that people in a way, sadly, don't care, but I dream to and goal is to reach people, not just in the Parkinson's community, and people not just diagnosed and caretakers, not just helping or aiding individuals with Parkinson's, because the only way I feel will have a cure one day is if we can get everybody in throughout the world to join in and understand. As far as her my mother was kind of, she was always finding, even doing this today. She would say, George, don't do it. Stay with your family configuration. So she always she's very selfless and caring, loving. But I think part of her didn't want to burden us. I mean, I was working in law enforcement, I was an attorney. And I have a PhD. So I was you know, teaching around the country doing my thing. My prior lifetime. As I say it was I fought for victims rights, an advocate for victims rights. Again, not to get too far. But I've always saw the criminal justice system where the family members of victims are forgotten. So in a way, I kind of calculate and look at the victims of parkinson patients, sometimes they're victims of the health care system. Because right now in the United States, we have no laws really helping fund or aid really research and right now through Congress. So the first time in history in the US, there is a bill through the mark, Michael J. Fox Foundation is helping called end Parkinson disease now, so I was really lucky enough to speak to my local representative, and you too, can and all of your listeners, and you can speak to your local representatives and try to help support the bill. And it's bipartisan, which is shocking, you know, anyone would go against, it's all for parking, the debit helped with research. And we were spending about $12,000 a month just to have somebody watch over my mother, and they weren't really medically prepared. And that's another interesting story we can talk about for caregiving. But just because you're the caregiver doesn't mean you don't need also some hands on help, because I also had to work and have my family. But I couldn't even leave her with these people because they weren't trained. Some didn't speak English some more in qualified but it was so expensive that the normal person or family just can't afford them. That's not counting, you know, entertainment, food and living. So it's just another conversation that has to be listened to. Well, it's absolutely I mean, that's why we're doing No Country for Old people the documentary because our system is you know, wrought with with ageism and ableism. And so, you know, the desert are forgotten the population unfortunately and and easily dismissed because it's not it's it's pervasive everywhere, you know, in society. It's unless you're touched by it, then then, you know, it's very it easy to fall into that that perspective of ageism, ableism. And that, you know, they're old, and they've had their life and that's it, you know, and, and it's okay. It's, it's very dismissive. And, and, and it's come at what didn't used to be like that. It didn't, you know, and it's all been evolving with capitalism and, and, you know, it's permeated everywhere, not just our country, but everywhere in countries that, that have really maintained their, their community based kind of society, it's changing, it's changing everywhere because of money. And so, you know, you're, you're definitely, you know, absolutely on point on that, and it's something that is bigger than that everything it's really needs to change. I mean, it has to change, it has to be a shift in the way we all think, because whether you get Parkinson's or Alzheimer's, or, you know, heart disease, whatever, whatever it takes you down, which we will all be taken down at some point, we're still victims of the system, which is, which is highly, you know, it's dysfunctional, at best. Well, it's also set as my mother past age 69. So I've always dreamt in my imagination and my mind that we all get a chance, you know, from 60 or 65, to like, maybe 85 to relax and she loves sitting on Sundays with her grandkids and, you know, blowing bubbles in the backyard. And every time I walked by the backyard now, I did saddens me because I think about how she was really robbed at that time, she knew she had a little money saved, and it was wiped out because of caring for Parkinson's disease. And, you know, she, we bought her a little beautiful home community away in South Florida. And we're just I pictured her sitting for 10 years, and just relaxing and looking back and being happy. And she only was at the house for one year. So we never even got that one year was a nightmare. I never got that. I'm so sorry. Again, I mean, do you think that I mean, when you say 69? To me, that just seems like tragic and so sad. But but But you think about, you know, when you when the when statistics come out about, you know, the elder community, it begins at 65. Right? And you know, it, we just can't, to me, we have to re we have to re re reframe how we look at aging, because 65, it's just, you know, just because I'm getting closer to it doesn't mean that you can't get that it doesn't mean I'm being sour grapes, but it means that I you know, I have no intention of slowing down until I have to, right, it's a different world down, it's a different way that we take care of ourselves, we've extended our lives. So 69 is like the prime of your life. Really, you know, and and so, but it's still looked at as, as, you know, the as aged and it's, it's treated that way. I mean, you only have to look at COVID, during during the height of it when they were taking away, you know, deciding who was going to be vented and who wasn't. And there's laws to protect our diverse population. There's laws to protect our, our disobey our disabled population, but there was no laws to protect our elders. So they were the ones that suffered. What do you think about that? I mean, how does that come into your conversation when you think about it? Because your mom was? I mean, she was taken out of this world too soon. Yeah, as an attorney also, I mean, I always think about how laws were not properly fit in many different ways. Even down to the topic of medical marijuana. We have, we had gotten a license from my mother, because I thought if she's in horrible pain, at least that would help but the distilleries don't speak to the patient or the doctor, and it was a disaster. So I felt like we mentioned earlier, every little step or hope that I had just didn't work out. And actually the reason I had to take over my mother's life and one of the hardest things I've ever done in my life was a few but one was taking away her car keys, because I couldn't allow her to drive because it's just a danger to herself and others. But she went for a special study because we were out of ideas. Three years before she passed, and they think she might have they might have changed her medication too drastically. When she came home that night. She was kind of I was called to rush over to her house at 4am. And I found her erratically and moving her furniture out of her home because she thought someone was inside I was going to harm her. And I think it just really caused her more that's when the whole star you know, the downfall began and they said she we saved her life that night, but kind selflessly feel that that was where it got, you know, maybe it wasn't a good idea what we did. But obviously you can't look back on the past, you have to look to the future with that another that same night I had brought her to the hospital, went home, I hate telling the story, but went to get some of her clothing. And I've never seen anything like it, it was almost like in one of the scary movies, but throughout her room, she had posted notes, like we used to write notes. And she wrote on the names, some of the dogs and family that she had to see if they were really there and who wasn't there. So she had lost a lot of the reality because of the dementia setting. And that was like one of the moments that just broke my heart forever. Even today, it's hard to talk about it. But I'm actually writing a book now, or I'm not supposed to tell anyone, but I can't stop every time. And it's kind of gonna be about our journey through mine as a caretaker and my mother's throughout her whole life, because I wouldn't be who I am today, if it wasn't for my mother and her sacrifices. So I'll be grateful forever. And as we move forward together, when we talk together for sharon.com, it's really just designed to, because when I was going through this, I was lost. So I thought we could put all the resources I found in one place, maybe would help one or two people. But I realized there's a million people in the US with Parkinson's. But I discovered three months ago, four months, throughout the world is 10 million people. So I decided this is not just about me and my mother anymore. It's about everybody. So I've actually been had a great opportunity. In the last three months of kind of cutting back and stuffing now that I've interviewed 400 people around the world from advocates to those diagnosed caretakers, you can all find it on together, for sure. And I do everything free. I do not allow people to donate money to us. We don't accept money. I just saw that. Yeah, amazing. We actually I've been lucky because it wasn't easy at first because I who am I I'm just some guy. They think, you know, people sadly and 2023 think you have to have something behind, you know, you have to have something you want are you selling but I want people to know, in your audience that there are people who love and send out support no matter what. And we don't want anything in return except the cure, that I was able to have interviews in Africa, Asia, France, Italy, Spain, Australia. I mean, it's just amazing to be able to share because in Africa, it's called Parkinson's, Africa. People think that they it's witchcraft to have Parkinson, and it's very sad, because they don't get the right treatment because of that, and funding. But again, these are all so much to talk about the just have to eliminate it obviously for time, but again, I just dedicated the rest of my life and to helping others. But I mean, I could still get Parkington they're not sure if genetic or not. I think honestly, it might have been something chemically, because my mother lived in a home which was nice, but for 20 years and they had the termites the head, you know, back then test spray was nothing no one ever share with a spread. It's really frightening. And you chose to because you some people chose choose when they go through an ordeal like this to just say that's it. I'm done. I'm moving on with my life. Was there was there ever a moment you said I, I need to separate that from myself separate from this order it was it always like, No, I know what I need to do. I think that's an incredible question. So I want to thank you for that. It's funny, one of the nurses during the tough times for my mother we had we actually had long term which was a year hospice because Parkinson's is not considered an end of life disease. And my mother had no other medical issue. That was very frustrating. But one of the nurses one night late, and I said they're amazing me because most families sadly just send their loved one to a home. And they actually live in different states and then ever seen again. And I saw while my mother was able to understand and not understand that we would never do that we'd always keep her in her own home. Even that guy very difficult, though, because if again, there's so many obstacles, whether it was stomach issues, whether it was you know, the medicines or the caretaker that even put video cameras in our home because she felt the caretakers were harming her. Luckily, they weren't. But there was one we found was neglecting her because she didn't sleep very well. She was screaming, it's like haunting. But I have a video, her yelling for help. And nobody came. And that was why I swore because when you send your loved one to the home, you don't really know what's happening there. And obviously, everyone's in a different position. So I can't ever judge anyone. I respect everyone and every family for what they have to go through. But I swore no matter what the we would at least be able to be with her until the end. And we were able to do that. Even though it's heartbreaking. Right? But I think yeah, I think like like you just said we all choose different ways to to deal with our own journey and our grief. You know, and I for me, I do. I'm doing the same thing. I'm taking what I've learned and paying it forward. Because I also, you know, I think like you because the journey was so long, and they can be very long diseases that, you know, we learned a lot. And we also need to, to, you know, really, really sort of get it out be have a cathartic sort of, you know, reckoning with all this all this journey because it is so I, I you talk about it like walking up stairs and then falling back down, I call it Whack a Mole because I couldn't keep up. You know, it just when I thought I conquered something, then another thing came up. And I had to conquer that and I couldn't keep up. At the end, you know, the last five, last six months of my mom's life was hell, and I couldn't keep up. And so, you know, on I had, you know, there's really no one to talk to. Because, you know, it's very difficult because you're trying to keep your loved one safe. And also stay healthy yourself. It's really hard. So I understand what you went through. Is there what what can you What would you like to talk about that you because you've done so many interviews? What what is something that you don't often get a chance to talk about that you feel that would be really, you know, helpful for others and yourself? What what would that be great, and I love your show is because it also talks a lot about caregiving. I'm in a world now. And I think about sitting here even while we talk, I don't have Parkinson's. And my mother is no longer with us. So I'm kind of stuck in the amount of caretaker now. And I'm not diagnosed, sometimes I actually still feel alone. But when I get to interview or speak to individuals that have been diagnosed and work with foundations, like the Parkinson Foundation, the American Parkinson Disease Association, and we do walks, it makes me feel a little hope and a little better. We do walks for Parkinson's. And we have a table where you just hang out like bands for free about awareness that sometimes we're in the middle of all the pharmaceutical company. So people walked by, and they're like, scared to come to us, again, they think we're selling, but then when they see that together for sharing, and they come up to us, they cry, and they thank us. And that's what really keeps me going. But I still, you know, again, learn a lot. I read a lot on this topics, writing my book. And our story is tough too. Because, like you mentioned, it brings me back to those months and years that were very tough, I felt alone, but I just want everyone to know, they're never alone, they just have to know, you know, were there people like all three of us out there that support them. And that's why we do what we do. I still wish to it's more for individuals like myself, who lost a loved one to Parkinson's, but isn't really grieving, or is still grieving because I've been to a few support groups, but again, it's for people going through it now. Or people who are diagnosed, so I still feel some days in my own kind of space, like forgotten. So I think that's one area that might need to be improved. But uh, the only thing I look for, again, because it's too late for our family, I don't want any other family to ever have to go through what my mother and I have. It's interesting, my my mother who's 89 should actually be 90 In two months but she was diagnosed with Park low level Parkinson's about maybe three years ago. And they said, Well, it probably won't progress but they they don't know how they know this, but they said it probably will not progress a lot. It'll probably stay kind of where it is. The thing is, as you said, Every one is different. Every every one is different. We never know with what she's going through whether that is that the Parkinson's is that old age is that you know what is it and it's so hard to address. And you know what, you know, doctor know if that is that they could say well that could be it's so hard to to grasp it especially at that level. And because there's there's so little that's consistent with each case, it's very difficult to navigate. And even with medications on another path and then I had three garbage bags big hefty black one full of medicines and I'm like well now here we go back two more questions. You know, she had you know, diagnosed fine, but which disease is it for the dementia? Is it for the Parkinson's? Or the caretakers I'm leaving to watch over giving them at the right time they kept journal but the people I don't have enough they again understood bargains and then is she getting too much of the medicine she take it the right there was just like you I think the example you use with the pawn hitting the little you know thing on the head. I mean, that sounds exactly what I felt like and even now talking about I feel like that again because you know, it's just you don't have answers. You want them you reach out and you just feel helpless. Sitting alone as a caretaker, I was lucky to have a supportive wife, but the rest of my family, you know, they weren't able to help as much. So I was really with my mother, you know, most of the time. And I just sitting there, and she would ask me is this, you know, am I going to be able to see her, her granddaughter, Brooke, you know, be at her wedding. And it broke my heart, because I couldn't, I wouldn't have a lot of my mother. That's another thing. She never, you know, get falsities or you know, you want to care for them and kind of help them along, but I never lied to my mother, but not having the answer was even worse than, you know, kind of telling a fib or, you know, a lie. Yeah. Do you ever have PTSD after basically B? And if so, how do you deal with it, you know, this is for others who may be experiencing kind of the same thing. There's probably moments where you feel like you're almost back it because because it's still part of your life, it's such a huge part of your life. I think we all have that I don't need, I don't think I need to take a medication thing. But I think what helped my medication is together to sharon.com. Because, like I said, my mission is that we have more awareness speaking to amazing people like both of you. But this is even helping me cope. It's like my therapy session as we talk. And you've all brought out some incredible thing that I didn't think of, that's why I love doing this. We could talk for 20 hours, you won't want me back. There's so many areas, and, you know, we just never have the time, but even the short time together, again, can change the world, even if we had just one person, I always had one voice, one son and one individual that together, voices to do so much stronger. I love you know, people have a misperception that, you know, that it's always the females that are caregivers, right. And so, and, and I know that that is not true. But you know, we don't see as many men being out there and vocal and really presenting themselves. And I think it's really wonderful that you're doing that, because I think it will pave the way for other, you know, sons and husbands and brothers and you know, just the males to come out and really embrace that, that role of being a caregiver, and be able to, to speak to that to other males. Because, you know, it's generally thought of as a as a female sort of role. And so I'm proud of you for that. I think that's fantastic. You know, and when, when you were talking about grieving, I was thinking about the same with with Alzheimer's, because it's such a long disease. And we don't, we can't predict really when it's going to end. And because it's such a slow progression, right, then you start getting used to each stage. And so each stage, like, I remember thinking, Well, I'm so lucky, because I can go and I can hold my mom's hand, I can get in and cuddle with her and still kiss her and love her up. I'm lucky I don't have to visit her at the cemetery. And even though so every loss that she had, I kept telling myself, you're so lucky, she's here. But there's that that phrase, you know, anticipatory grief that we experience while they're alive. And we keep and it's a stress, it's a stress because you know, it's going to happen at some point. But for me, and I'm assuming for you, it's it's that feeling of like, this stage is going to last forever, and until it doesn't. And so you grieve again, you grieve that loss, you keep grieving losses until when they finally leave the Earth. It's it's a very for me, it was a very confusing phenomenon. Like I, I, I really thought I was going to lose it before it happened. And I was so much stronger than I thought I was going to be. And I know that I haven't dealt with it. So yeah, can you talk to that? That's like an inner battle or struggle with yourself. Because, again, you're trying to find different I didn't even know what five stages of Parkinson's was. But like you said, when we were at number one, I was trying to combat ever getting to number two, that you can't do that. And it was just like an every day that was something else. Like I finally had one relief Navy because she was okay for the minute but then something else like we thought she had a stroke one day because she lost the ability to use part of her face and it was not stroke. But it's just like one thing after another and writing the book now. It's kind of making me bring it back, which is not easy actually. When I was going through the last year, I didn't dream it would be her final year but I kept a little journal and just a handwritten one I wrote notes so that'll be incorporated and I also videotaped and photographed but I won't ever share the video or the pictures because I don't want her to be remembered like that. But I am going to share the journal and it really is a raw footage written of how I felt and how I was kind of screaming for help and nobody was responding and it was you know, hopefully What I want people to do, and I guess the book will be in the future I won't talk much about but I want people to know, again, that they're not alone. And that, you know, maybe if they could learn one thing through our, my struggle, that it'll help them and they really felt that there was no one out there. Who could have we went to like seven or eight expert doctors. I had to pull the last Doctor into an office by ourselves, says my mother gonna live as she I couldn't answer her and he didn't even know. So just a horrible situation for a caregiver and even more obviously, for the individual that diagnosed. Yeah, I think, recommend not have Oh, go ahead says no, I was gonna say that speaks to the anticipatory grief that we experienced. Because, you know, no one can tell us anything, you know, definite it that will give us some sense of, of, you know, direction and, and timeframe. So, you know, I always dread the dreaded calls, you know, that I would get like a call and my heart would beat and I'd go, I'd let it go go to voicemail before I pick it up, because I wanted to, you know, take a breath before because I was always fearing the worst. And and that's that's a that's a horrible place to live. You know, always fearing the worst. Right? Did you? Yeah. I mean, even we had made a vacation with my family before we knew who was getting so bad. And the second I got on the plane for the second I went there. The second I got home that she was calling 24/7. And I answered No matter what, that it was, like, you know, I couldn't even have that one minute to myself, I used to be into personal training fitness. I remember I played like competitive basketball for also for fun. In one Sunday morning, I was all excited at 8am to go play with my friends and had all the gear on, which takes a long time because I broken everybody apart. But after I had had it all ready to go, my mother called and I dropped everything for myself to go help her. Even though I couldn't help her. I just want her to know I was physically there. But uh, you know, and then there was a day, I hate telling some of the stories where I was just sitting on the bed with my mother and my daughter. At the time, she was about six, my mother started hugging her, like one of the pillows, saying how much he loved Brooke, but she didn't realize that Brooke was next to her. It wasn't the pillow. She was hugging the pillow. And those things are just kind of heartbreaking. My daughter looked at me and I didn't know what to say. And that's another book I'm planning is to write a book about, you know, dealing with the grandparents and kids, when you because I couldn't explain to my kids. There's a lot of things again, I have planned in retrospect, to for to help others. Would you recommend not taking the route of drop everything, don't take care of myself? Because it's not healthy. And it's not good for the person that you're caregiving for. Also, if you're unhealthy if you're you know, it, it's you do have to, as the you know, using the old adage, put your oxygen mask on first, sometimes in order that you're healthy enough to take care of them? Would you kind of have a recommendation people that no, do take time for yourself, do keep yourself healthy, don't start stop working out. Because those are all making you less healthy mentally and physically, which is not a benefit to the person you're caregiving for. I think you make an amazing plan. Again, I think each individual is different. So for my case, I would I would recommend people to definitely take a little time, maybe an hour a day and just don't bring the phone. But the problem is, like Suzy was mentioning, I don't think I could do that. Because if something in that hour happened, I would never want to look back and regret it. That's my big thing is never looked back and regret something. We tried everything. So I know that in my heart, if we had to do it again, which I would, there's nothing I could have really changed because we don't have a cure. But you know, so me personally, it's a bad advice. And I would just do the same thing. But you do have to try and make time to or you'll lose your mind in a way. Because there were days where I felt like like the wily coyote in the, you know, the Looney Tunes, like were just hitting me and I'm getting better, you know, I would fight back and win in the end. Because I feel like we did win even though obviously, I lost my mother. Her stories I hope will live on not just from my time, but I'm going to hopefully my daughter will continue this and you know, I mean, I'm hoping we'll have a cure before that. But if not, I want this to go on until we do that. I don't want anyone out there to think they're alone. And the fun. The nice thing is when I do publish the interviews like every day, there's a new one done 365 There's many more are working on. But one every day anyone comes up with like a new story to tell. And it just makes my heart feel better because knowing that, you know one more person has a place now to share their journey. That's what again, keeps me motivated, going. That's, that is a beautiful thing that I feel the same way with this show is that you know, that we the more stories that we share, you know, the that is that is the penicillin for for caregivers right now are other people's stories because we, if we can see ourselves in other people's stories, then we don't feel alone. Right, and so in it does make you feel so supported and validated for the choices that you make. I mean, that's why we did our movie, my mom and the girl, you know, really showing what is the day in the life of you know, and so that, and I think, for us, I know, for us, you know, hearing people come up to us and or getting letters to this day, we did this film six years ago, you know, this film is my life, you said you told my story, and it's not their story, but it is. Because it's, it's the emotion. And, and it's and that's, that's all we can do is to share our stories, that's the most powerful thing we have. And so what you're doing is is, is for me, the perfect thing you're doing is, you know, what you're doing, honoring your mom, and, and paying it forward with everything you've learned and giving a safe space for people to, to express their stories is it's the highest thing you can do as a caregiver. And so, you know, I know that both Don and I feel very, you know, excited for you and happy for you that you're doing this and happy for other caregivers out there that they have a place to go, you know, and specifically for Parkinson's, and you know, that that's, that's a gift. The only thing that still breaks my heart is the one journey that I'm not aware of, because there are people out there, and I just might not know about them, I always encourage people to reach out anytime 24/7 And you know, someone, even both of you I have I continue the information because I you both have amazing stories to share. And I also like keeping the memory of your loved ones alive forever. But you know, and then there's a, luckily, out of maybe 500, or 402, or three just didn't want to but those are the ones that really kind of made me upset too, because I just want them to be remembered like that. And I understand someone diagnosed obviously, it's privacy, and I'm for that, but that organizations, there's one there was out of the US that said they're not into that I'm like, the whole purpose of what you're doing is what we're trying to do is share you know and get help them fundraising, I don't want to but you'll always have you know, one or two in every field and things but again, the one individual or organization that kind of hurts is the one that doesn't want the short term story told, or the one that I just am not aware of the other day, quick stories, I'd actually met someone who Instagram me and I didn't even know because he you know, you know, you have so many I'm it's just me, like there's not a foundation, it's just one guy like me, who lost a mother and loved one. So I was able to reach out to them. And in one day, I pushed their story forward. He's a lawyer, he, you know, he's fighting with the same issues in the Parkinson's field. And just I was really fascinated, they started their own little organization. And it's just fascinating. And he's very small. So by me putting up, it's up right now, their story, that, you know, maybe it'll help them fundraise for Team Fox, or Michael J. Fox Foundation. But those are the little things that again, just make me in the world. To me, it's really sharing other people's journey and helping them to. Yeah, it's so important because, you know, if if you say some people, you know, it's it is a private thing, and it definitely is, but the more we, we just put it out there, it removes the stigma of it. And I think because and then there the therefore the fear, and therefore, you know, it opens us up to to, you know, when and again, this comes back to telling your stories, that that's, you know, if we don't keep it in the shadows, it's never going to progress, you know, where the so, you know, for people to and therefore, like Michael J Fox, there's nobody who could put himself more out there than him. This is, you know, somebody who knew the public knew before and now and that's why it's so important. So what you're doing is, you know, just a huge, huge kudos because, you know, you're allowing, you're allowing that, you know, a platform for these people. So, bravo to you. Yeah, I think telling our mistakes that we've made as caregivers can alleviate the any stress that other caregivers are having now like you and I are are not currently caregivers and we probably will be again at some point. And, but right now we're not so we can take that information that we've learned, like I always I'm very, very transparent about the mistakes I made in the beginning with my mom and, and how, you know, I learned and decided to embrace her disease as best I could because that was the right thing to do. And but it took me a while and you know, I put put it in the documentary where, you know, it makes me cringe sometimes to think about the mistakes I made, but that's okay. Because that's how we learn. And I can maybe, with with by telling it, like you're doing we can we can alleviate any stress that someone may be going through right now. Or, or, you know, be able to to have them skip that step, you know, and not have to go through it and be frustrated. So that's why it's really valuable. Is there anything else that you would want to talk about? No, I mean, I really, I really appreciate the time. And I just happened to have this up, I don't think in theory, but tomorrow, I have a story about it's Linda and Keith Hall from Parkinson's fitness. It's a fan of husband and wife who started doing a little bit of organization for fitness for individual Parkinson. One thing I didn't really know and my mother kinda was too late was fitness is really important because Parkinson's and neurological disorder, and we didn't get a lot of time to talk about that. But if you can do fitness, like this punching for Parkinson's is walking for Parkinson's, the dancing for private been able to really interview all these individuals around the world, and is even ping pong for parking. I never knew how many things there were. And so I tried to bring them all on my page, just so you can see. But if you go through all the interviews, it's just fascinating to see how Parkinson's can affect the family. But instead, like you said, instead of just living with it, and keeping down and quiet, they're all trying to do their best to fight back. So the next book I'm planning after the journey of my mother and my myself as a caretaker, is going to be publishing all the interviews. So I've got approval from everyone who I interviewed. So there's a lot of amazing things coming. And I just, you know, stay tuned, really thank you both for your time. And, again, I feel like we've become family and just the short time and your your time in the world. And I've had some great opportunity, I was able to interview Muhammad Ali's daughter, I've spoken to some really incredible famous celebrities, which is great because you want them involved because they have more awareness. Some of them they'll respond, but that's because I'm just me. Tired, I've even written to, you know, again, there's so much to talk about, I've written to 15 politician that didn't really get any response, which is hard said, because we need them involved that fit into newspapers, who will cover other things, but not Parkinson's and didn't get any responses. But I'm the type of person that you come to know me that won't give up. And there's a good reason for it. It's just I want more people, again, to be aware, like we started and that I feel, if we had individuals more aware that we would already have a cure. So again, you know, everyone listening, thank you for your time, there's people like me out there who say I love and support again, and I'm grateful. Thank you. Well, thank you, thank you for doing what you're doing in such a altruistic, open, you know, very generous way. And I'm glad that we finally got to do this together for sharing is an amazing resource. Please go and check it out. You know, if you if you haven't, please do, please. And if you have a wonderful story to tell, please, you know, reach out to George he's so he's so you know, a meaningful and just, you know, a human being a mensch, as they say in French and so and I and I promise yeah, I've gotten very Jewish now that my mom's started I like taking it on. Yeah, I've embraced my my Jewishness so anyway. And but I think that you are you are definitely my mother would say you're such a match and your mom, you know, you're doing well by your mother. I know your mom's proud of you. We're proud of you. And really take advantage you guys of this of this wonderful resource and also an outlet and a platform to tell your story about Parkinson's and your your journey with it. We really thank you for coming on today. And, you know, I'm wishing you the best of luck and you'll come back again. And when you get your book done. Talk about your book. Yeah, that'd be wonderful. Yeah, good luck. Good luck, George. Thank you so much. Thank you