Latest / The Bridges and Beacons Podcast / In Memory of Sharon for Parkinson's Disease Awareness & Hope for a Cure

Transcript

In Memory of Sharon for Parkinson's Disease Awareness & Hope for a Cure · The Bridges and Beacons Podcast

• 0:39
  SPEAKER_00: Hello, hello, hello, and welcome to the Mystic Nerd Squad podcast.
• 0:44
  SPEAKER_00: I'm your host, Kelly Meyerson, and today I'm joined by Dr.
• 0:49
  SPEAKER_00: George Ackerman.
• 0:50
  SPEAKER_00: And before we start, I'd like to share just a little bit about him.
• 0:54
  SPEAKER_00: Dr.
• 0:55
  SPEAKER_00: George Ackerman, Sharon's son, lost his mother, Sharon, on 1-1 2020 due to Parkinson's disease.
• 1:02
  SPEAKER_00: With his family, he started Together for Sharon for the purpose of keeping his mother, Sharon's memory alive and to share the message of Parkinson's awareness and hope for a cure.
• 1:14
  SPEAKER_00: Today, TogetherForSharon.com reaches thousands of individuals across the country for Parkinson's disease awareness.
• 1:22
  SPEAKER_00: George, I want to start by saying welcome.
• 1:25
  SPEAKER_00: Thank you for being here.
• 1:28
  SPEAKER_00: And before you say hello, I just wanted to encourage the listeners to really tune in today, really pay attention.
• 1:36
  SPEAKER_00: George has an incredible mission.
• 1:39
  SPEAKER_00: He's doing some amazing work for Parkinson's disease and to help hope for a cure.
• 1:47
  SPEAKER_00: So make sure to listen carefully because he's going to give you some great ways at the end to help in this mission.
• 1:54
  SPEAKER_00: So, George, welcome.
• 1:56
  SPEAKER_00: Thanks for being here.
• 1:58
  SPEAKER_01: Thanks.
• 1:58
  SPEAKER_01: I appreciate your time and the viewers.
• 2:00
  SPEAKER_01: It means the world to me and my family.
• 2:02
  SPEAKER_01: Also is excited because I love the name of your show, which I think is uh I consider myself a nerd in different ways, but this one is an important mission.
• 2:11
  SPEAKER_01: And uh that actually captured a lot of people's attention because I kind of told people online throughout several social media that I'll be appearing on the show.
• 2:19
  SPEAKER_01: And they were they're like they all like the name.
• 2:22
  SPEAKER_01: So I wanted to thank you for that.
• 2:23
  SPEAKER_00: Oh, thank you.
• 2:24
  SPEAKER_00: I appreciate that.
• 2:25
  SPEAKER_00: Yeah, I mean, I same like I'm a nerd with a science background, you know, as an occupational therapist, I've spent, you know, my career in the sciences.
• 2:36
  SPEAKER_00: Um, but also believe that there's a lot more to what we can accomplish.
• 2:41
  SPEAKER_00: And I think your story definitely fits in with that.
• 2:44
  SPEAKER_00: So, George, would you just start out?
• 2:47
  SPEAKER_00: Um, this mission is a big one, but it's also a very personal mission for you because it's really about your mom, about Sharon.
• 2:56
  SPEAKER_00: So could you tell us a little bit about her?
• 2:59
  SPEAKER_01: Yeah, unfortunately she passed, like you mentioned earlier, due to Parkinson.
• 3:03
  SPEAKER_01: So it's I get that question, why am I even doing this?
• 3:05
  SPEAKER_01: And it's because obviously we can't bring her back.
• 3:08
  SPEAKER_01: But I never want, number one, anyone to feel alone because I felt alone as a caregiver, and my mother really felt alone as someone diagnosed battling Parkinson's.
• 3:17
  SPEAKER_01: But also, uh, you know, it's important to keep awareness out and hope that no one else has to ever go through what my mother or our family has.
• 3:26
  SPEAKER_01: So that kind of is where uh brings me today.
• 3:29
  SPEAKER_01: There's a lot to talk about.
• 3:31
  SPEAKER_01: It's not enough time ever.
• 3:33
  SPEAKER_01: Usually I don't even get to talk about me because I don't get through anymore.
• 3:36
  SPEAKER_01: Like I kind of become like if it's joke, like a Madonna and Oprah, because I try to go by Sharon's son, George, because I feel that I wouldn't be the man I am today or have the success I have in life if it wasn't for my mother's sacrifice.
• 3:49
  SPEAKER_01: She was a school teacher, loved children, and also had a master's, and she literally threw it off when they gave it up to raise me and my brother.
• 3:57
  SPEAKER_01: So I knew when it was the day that kind of been a calling for me to step up and be there for her when she needed it, uh, that I would do that and be proud of it.
• 4:06
  SPEAKER_01: Uh so she was really loving, supportive, and sometimes at a fault because she had Parkinson's for 15 years, but she didn't even tell us much about it till almost seven years.
• 4:18
  SPEAKER_01: And the only uh thing I could think of is she didn't want to burden the family, which I wish she did.
• 4:24
  SPEAKER_01: But towards the last four years is when everything changed, which we'll get to later if we have time.
• 4:29
  SPEAKER_01: But that's when I really had to kind of take over really her life.
• 4:32
  SPEAKER_01: She was very young, she was only 69.
• 4:34
  SPEAKER_01: She had no medical issues really her whole life.
• 4:37
  SPEAKER_01: Uh, but those last four years were tough.
• 4:39
  SPEAKER_01: She went from walking several miles a week to uh two years of the cane, a year uh walker, a year uh wheelchair, and then bedbound for seven days.
• 4:50
  SPEAKER_01: So it was not something that I could ever dream of or something that young that you think you'll ever see.
• 4:56
  SPEAKER_01: You know, again, I'm in a weird mind space feeling that 2024 we should be living till 85, 90, and obviously things happen towards that time, but not 69.
• 5:07
  SPEAKER_01: But again, I could be wrong, it's just my opinion.
• 5:10
  SPEAKER_01: Uh and again, she was really uh amazing.
• 5:12
  SPEAKER_01: She her favorite time was being with her three grandchildren, blowing bubbles in the backyard.
• 5:17
  SPEAKER_01: So even today it's tough because I walk by the backyard and you know, I miss those memories, or the holidays, or seeing my daughters now.
• 5:24
  SPEAKER_01: She was about seven at the time my mother passed, and uh now she's almost gonna be 12 next month.
• 5:31
  SPEAKER_01: So it's you know, all those birthdays and things without my mother having a seat at the table is tough.
• 5:36
  SPEAKER_01: Uh, but there are a lot of important memories.
• 5:39
  SPEAKER_01: Like if we get to the book, the cover of the book is actually the mother son dance and my wedding.
• 5:45
  SPEAKER_01: And I always say it's one of my favorite memories of my life because in that moment, if you see the picture, she were both smiling and Parkinson didn't exist or matter at that three minutes.
• 5:54
  SPEAKER_01: I know it's not a long time, but I have it on video and I could look back to see her laughing and uh smiling.
• 6:01
  SPEAKER_01: The only regret I do have, which we didn't get to yet, but it always kind of hits me in the head.
• 6:05
  SPEAKER_01: Uh, 10, you know, six, seven years ago, no one had shows.
• 6:09
  SPEAKER_01: Like now everybody kind of has a show, which I love because you have an opportunity to voice your opinions and life and help reach people like this.
• 6:17
  SPEAKER_01: And uh I wish I had a podcast with my mother, but not about Parkinson's.
• 6:21
  SPEAKER_01: I wish we had talked about life and my childhood and her childhood, because I put a lot of it in the book, but it's so much like kind of empty spaces I'll never remember or remember know because I'm so young.
• 6:32
  SPEAKER_01: So that's one regret I'll always have.
• 6:34
  SPEAKER_01: But like I said, there's no way we could have had the technology back then.
• 6:38
  SPEAKER_00: Yeah, I I think so many people, uh, myself included, can relate to that, you know, losing a parent as an adult, but also losing the memories that will never happen.
• 6:52
  SPEAKER_00: That is such a hard thing.
• 6:53
  SPEAKER_00: Um, and I think it's such a beautiful thing.
• 6:57
  SPEAKER_00: I'm glad you brought up the book.
• 6:58
  SPEAKER_00: Um, I'm I'm a huge book fan.
• 7:02
  SPEAKER_00: So um I love that you've been able to create this book and share your journey in a way that, you know, thinking about future generations, your kids get to know a little bit more about the background of of your mom and her life and your journey.
• 7:19
  SPEAKER_00: Um, so tell me a little bit more about the book and how that came to be and um what made you decide to go for a book?
• 7:28
  SPEAKER_00: There it is.
• 7:29
  SPEAKER_00: I love it.
• 7:29
  SPEAKER_01: Yeah, I didn't want, I wasn't gonna write a book.
• 7:31
  SPEAKER_01: Um my background is I'm a police officer reserved now.
• 7:34
  SPEAKER_01: I'm an attorney in Florida and DC, and also have a PhD in criminal justice.
• 7:38
  SPEAKER_01: So I've written books on the constitutional law and criminal justice.
• 7:42
  SPEAKER_01: I kind of stopped because the whole world is so polarized with that, and I don't want to be on like one of these TV channels, and then everyone doesn't even want to support Parkinson's awareness.
• 7:51
  SPEAKER_01: So I gave up and all that.
• 7:53
  SPEAKER_01: But my whole life I've been an advocate before Parkinson's disease as a caregiver, or today as an advocate, I was an advocate for uh uh not just one population, but specifically African-American mothers who lost their loved ones due to murder due to crime.
• 8:08
  SPEAKER_01: So it's uh what I found sadly in being in the criminal justice system.
• 8:13
  SPEAKER_01: A lot of times, sadly, you have a victim of crime, but then the family becomes secondary victims and they're often forgotten.
• 8:20
  SPEAKER_01: And I feel the same way in a way with the Parkinson's population, because there's about one million people in the U.S., which really is not a lot if you think about it.
• 8:29
  SPEAKER_01: But if it affects you or your loved one, it's destruction.
• 8:32
  SPEAKER_01: It's like literal, I don't know if that's a better word, even for Saturday morning, but it's uh the disease is horrifying and terrible in seeing you know, healthy my mother go from someone who was, you know, how healthy, independent, lived alone to someone who was bedbound after only four years.
• 8:51
  SPEAKER_01: We don't understand why it progressed so quickly.
• 8:53
  SPEAKER_01: Again, the tough thing and why we have no cure is Parkinson's is different for every person.
• 8:58
  SPEAKER_01: So what happened to my mother's journey doesn't mean it'll happen to someone else.
• 9:02
  SPEAKER_01: So that's why we have no cure.
• 9:04
  SPEAKER_01: The book came about because I was shocked.
• 9:07
  SPEAKER_01: You know, I do a lot of research, like you in your medical field, and I was shocked.
• 9:11
  SPEAKER_01: And I always say, everyone's listening live or recorded, email me if I'm wrong because I love it.
• 9:17
  SPEAKER_01: But I've never seen one book in the world, like literally in the world, about a son who lost their mother due to Parkinson's, uh, like a book.
• 9:25
  SPEAKER_01: I mean, I'm still don't get it, but that's what I why I decided.
• 9:28
  SPEAKER_01: Plus, I kept a journal the last year of my mother's life, uh, as a caregiver, the good, the bad, and the ugly.
• 9:35
  SPEAKER_01: Literally had to date and a timestamp several times a day of how I what I was going through.
• 9:40
  SPEAKER_01: And it's almost like me screaming for help, but no one helped came.
• 9:44
  SPEAKER_01: And uh, you know, we lost the fight.
• 9:46
  SPEAKER_01: We tried everything.
• 9:47
  SPEAKER_01: There was nothing that we ever could look back to now, today.
• 9:52
  SPEAKER_01: Even have a funny story about getting the Florida just allowed back then, medical marijuana license, and I'm a cop.
• 9:58
  SPEAKER_01: So that was uh I felt like James Bond or Mission Impossible going into the store because I didn't want to get arrested, even though everything was legal.
• 10:06
  SPEAKER_01: But it was like a comedy show, but I swore I would try anything so she wouldn't have to have pain.
• 10:11
  SPEAKER_01: Unfortunately, the distilleries and the doctors don't speak, so I don't know if you know viewers are all know a lot about that, but the uh they don't there's no way to say, you know, here take this or this amount.
• 10:23
  SPEAKER_01: So it's all like experimental, it's safe.
• 10:25
  SPEAKER_01: But so one time she took a little and she kind of fell out, you know, uh got more agitated, and then she took too much and fell over in the wheelchair sleep.
• 10:35
  SPEAKER_01: So never really worked, and it didn't help with pain.
• 10:38
  SPEAKER_01: So I do I'm a big believer in it if it helps someone like for horrible life-ending disease, but unfortunately for us it didn't work.
• 10:46
  SPEAKER_01: But it's a journey of me and my mother, also my mother's life.
• 10:51
  SPEAKER_01: I spent a tremendous amount of money on it just because I wanted it to edit it properly because it's her story, but uh, we didn't make a lot because it's hard.
• 10:59
  SPEAKER_01: You know, it's uh Parkinson's awareness is not an easy, it's like an uphill battle.
• 11:03
  SPEAKER_01: But the nice thing is that whatever we made, we donated directly to the Michael J.
• 11:08
  SPEAKER_01: Fox Foundation and other organizations that are out there offering resources.
• 11:13
  SPEAKER_01: You know, we started together for Sharon.com in her memory, and I thought we'd have like three people, and I would have been fine with that.
• 11:18
  SPEAKER_01: But we've had over 50,000 visit the site and it's growing.
• 11:22
  SPEAKER_01: I don't know if it's because of our work or that the disease is progressing.
• 11:26
  SPEAKER_01: And one last shocking thing is that all of a sudden, just this month and last, you've been seeing huge, huge, huge celebrities coming out for the first time talking about how their parents passed or fought Parkinson's like Ryan Reynolds.
• 11:39
  SPEAKER_01: You had the national issue with President Biden, who again, I don't care if he I hope he doesn't, but I don't I'm not worried about if he had or not.
• 11:47
  SPEAKER_01: I I just think it's important that it's a national, it's out of your like lips now.
• 11:50
  SPEAKER_01: A lot of people, the word Parkinson's there never was before.
• 11:54
  SPEAKER_01: So uh again, more and more and more celebrities now were coming out talking about it.
• 11:59
  SPEAKER_01: And that's important because you know Michael J.
• 12:01
  SPEAKER_01: Fox is a hero of mine.
• 12:03
  SPEAKER_01: I had the honor to meet him a few times, but he could have he had a young onset, early onset, Parkinson's in the 30s.
• 12:10
  SPEAKER_01: He could have kind of led a private life and never spoke about it, but he didn't.
• 12:14
  SPEAKER_01: He fought back, and even today he's the face of the you know movement and he's the hero of mine.
• 12:20
  SPEAKER_01: Uh unfortunately, I don't know if you saw, but recently he was uh playing on stage, which was beautiful with cold play, but he's not doing well.
• 12:27
  SPEAKER_01: I think he was in a wheelchair for the first time.
• 12:30
  SPEAKER_01: So, you know, I see the incredibleness of it all that's a word of the nurse.
• 12:35
  SPEAKER_01: But the sad thing is at the same time, it's like I've seen a little of my mother.
• 12:39
  SPEAKER_01: And I actually met him.
• 12:40
  SPEAKER_01: Uh we went to Comic Con or one of those Com MegaCon.
• 12:43
  SPEAKER_01: I've never been to one of those.
• 12:45
  SPEAKER_01: It's really fun for the nurse.
• 12:47
  SPEAKER_01: I uh, you know, I'm not a big fan of that.
• 12:49
  SPEAKER_01: I love it when I was younger, just on time because I work so much.
• 12:53
  SPEAKER_01: But when I was there, I used it for an opportunity that I thought was once in a lifetime to meet him.
• 12:58
  SPEAKER_01: I got to speak to him.
• 12:59
  SPEAKER_01: I told him about my mother.
• 13:00
  SPEAKER_01: We actually handed him the ban, which you weren't allowed to do, and I'm proud that I did it.
• 13:04
  SPEAKER_01: He actually put, if you look at the picture on our website, he has it on, and he thanked me and I told him how much we love him and that we're fighting for him, and we donated to his, and he was really uh appreciative.
• 13:14
  SPEAKER_01: But you know, I wanted to ask him to have an interview, but I didn't want to bother.
• 13:18
  SPEAKER_01: So next time I do, I'm gonna throw that part in.
• 13:22
  SPEAKER_00: Yeah, that I that I mean, I as a child of the 80s, uh, Michael J.
• 13:27
  SPEAKER_00: Fox is, you know, one of our favorites at my house too.
• 13:32
  SPEAKER_00: I think hearing you say all of that and and the tremendous response that you're getting, um, and more people talking about Parkinson's, whether they're coming out to say, you know, I have it, a parent fought it, I think that's a huge step forward.
• 13:53
  SPEAKER_00: And I just have to believe that part of your tireless efforts are part of why that's happening.
• 13:59
  SPEAKER_00: Um, you know, I know you're you're continuously talking to people, talking about it, advocating.
• 14:07
  SPEAKER_00: Um, and it's it's really impressive and and sadly unprecedented.
• 14:13
  SPEAKER_00: But I think this is just such a great moment to see with social media, with podcasts, with the connectedness that we have, how quickly a journey and a story like yours can become viral and can become something that gets in people's minds and uh hopefully on their hearts to to do something and to be a part of the journey and making things better.
• 16:01
  SPEAKER_00: So what is it that would be really helpful for the research for this disease?
• 16:08
  SPEAKER_00: Where are we not doing enough right now in terms of the science community?
• 16:14
  SPEAKER_01: First, I'm grateful for your time and your show because honestly, I've done a lot of them, but I'm trying to not target but speak to outreach people like you and your show.
• 16:23
  SPEAKER_01: I mean, you have a background, but a lot of the hosts don't.
• 16:26
  SPEAKER_01: And the other day I did a show, she had a show for seven years, and she said today was the first day she's had someone to talk about Parkinson's awareness.
• 16:34
  SPEAKER_01: So I really try and I love the Parkinson's community, but I try to go outside and find individuals who inspire me like you, but also that haven't talked about or the viewers aren't don't have Parkinson's or aren't aware because I think that's the only way we'll ever find a cure.
• 16:50
  SPEAKER_01: Science community, because the Michael J.
• 16:52
  SPEAKER_01: Fox Foundation has made some big groundbreaking things.
• 16:55
  SPEAKER_01: Unfortunately, I remember when my mother was very sick, we heard there was going to be a pill, like a magic pill that you take and it's gone.
• 17:02
  SPEAKER_01: Didn't happen, and I don't think it will anytime soon, but they discovered a breakthrough called the biomarker two years ago, I think, and it's a needle, it's evasive, so I'm not doing it because I've had enough surgery and acting that they put in your spine, and they can, I believe, find out if you have Parkinson's, which is important to avoid misdiagnosis and late diagnosis.
• 17:25
  SPEAKER_01: So that's very because there's been people who they don't even know if they have Parkinson's, so they're giving them medicine, but it's the wrong medicine, so it's tragic.
• 17:33
  SPEAKER_01: So that it's some progression with the uh actual uh cure, uh not cure, but the uh different signs.
• 17:40
  SPEAKER_01: But one big thing is just a few weeks ago, history was made when the first law in federal law in US ever history, which I'm shocked at the first time, I don't get it, but the national plan to end Parkinson's disease passed, uh excuse me, and that was signed by uh President Biden just a few weeks ago.
• 17:59
  SPEAKER_01: It's the first bill in history spearheaded by the Michael J.
• 18:02
  SPEAKER_01: Fox Foundation, but so many more.
• 18:05
  SPEAKER_01: And that's uh, excuse me, that's the first bill that will help now with awareness, funding federally, which is never done before for uh uh research for a cure and awareness, and really just incredible.
• 18:18
  SPEAKER_01: If everyone has time, you can see more about it uh togetherfish.com or just go to you know the web and type in the national plans and Parkinson's disease.
• 18:27
  SPEAKER_01: It's actually kind of mirrored a little from Alzheimer's, but Parkinson's just hasn't had the attention until recently that it needs.
• 18:36
  SPEAKER_01: And um, you know, if we get to it, I can tell you a little bit about the stages, which is kind of tough.
• 18:40
  SPEAKER_01: But I do mention that there's a lot of positive and light from the darkness that I've gone through.
• 18:45
  SPEAKER_01: And I met some incredible people like yourself and your audience.
• 18:49
  SPEAKER_01: And just two years ago, I was shocked to find out.
• 18:52
  SPEAKER_01: I knew there was about a million people in the US, but I wasn't aware there were 10 million around the world, and uh that was hard.
• 19:00
  SPEAKER_01: Sorry, that was heartbreaking because uh I didn't, I was shocked.
• 19:04
  SPEAKER_01: Like so I realized two years ago it wasn't just about me and my mother only anymore, it's about everybody and how I feel we have to be a family in this fight.
• 19:12
  SPEAKER_01: There are a few people who don't agree, which is sad, but 99.9 agree.
• 19:16
  SPEAKER_01: Uh, even coming here today, I feel like you know, you sharing this and then I will around the world, it just if we just reach one person, we've changed their life forever, knowing they're not alone.
• 19:27
  SPEAKER_01: So I've interviewed about 800 people around the world from Italy, France, Spain, Nova Scotia to Iceland.
• 19:33
  SPEAKER_01: Parkinson doesn't discriminate, and we put them all in together for sure and completely free.
• 19:38
  SPEAKER_01: There's no catch.
• 19:39
  SPEAKER_01: Uh as I forgot to mention, I always say, which is sad, but I have to kind of remind people we don't accept money.
• 19:45
  SPEAKER_01: Don't send any to me because I have to send it back and then I have to pay for that.
• 19:50
  SPEAKER_01: But we don't, uh, you know, it's sad, but I get like looked at in weird the 1% odd.
• 19:55
  SPEAKER_01: Like, why is he doing this?
• 19:56
  SPEAKER_01: He can't bring his mother back and just move on.
• 19:59
  SPEAKER_01: But that's another book I'm actually working on about, you know, I don't have Parkinson's, I'm no longer caregiver someone alive with it, but there's a third category of billions of I feel it's sad, but millions and millions and millions, more than 20 that lost a loved one over the past decade due to Parkinson, but there's not really a place for us.
• 20:18
  SPEAKER_01: So I honored to start to go for Sharon in a way because it gave me a voice, and my mother still has a place, I think, in this fight for a cure uh for others.
• 20:28
  SPEAKER_01: So, and then I'm excited, like I mentioned before the show.
• 20:31
  SPEAKER_01: Just found out that the book is almost literally done with editing.
• 20:36
  SPEAKER_01: There's my second book in the area of Parkinson's, but my first uh interview book will be 200 interviews of different people who have Parkinson's advocates across the world, uh, and it's just so incredible.
• 20:48
  SPEAKER_01: It's made to inspire people, it inspires me.
• 20:50
  SPEAKER_01: That's why I still do this on the tough days.
• 20:52
  SPEAKER_01: I don't want to do it anymore.
• 20:54
  SPEAKER_01: Like we're here Saturday morning, a lot of people are sleeping, and I'm gonna be going back to work after, but it's like, you know, I'm driven because I don't want people to go through this.
• 21:03
  SPEAKER_01: And uh hopefully it'll be a four-book set, then I'm gonna stop because I have probably reaching a thousand interviews, but I can't.
• 21:10
  SPEAKER_01: A lot of this, we don't we're not a foundation on purpose.
• 21:13
  SPEAKER_01: I didn't want it to be about money, but I'm spending thousands and thousands and thousands, and you know, I don't ask for a money back, we don't accept it, but it gets tough.
• 21:21
  SPEAKER_01: So, my reason I'm explaining that is I'm really trying hard and I think it'll be done.
• 21:26
  SPEAKER_01: We'll offer a soft cover, which will be a fee, but we're gonna try and offer for the first time an ebook completely free.
• 21:32
  SPEAKER_01: So that's really exciting because it's not easy to do that.
• 21:35
  SPEAKER_01: I mean, I spent three to five thousand putting it out and we're gonna offer for free, but I just think that so many people inspire me, their their mission and their journey have to be out there, and that's why I'm uh really excited.
• 21:48
  SPEAKER_01: So I think in a month or even less, I'm already working on the cover.
• 21:52
  SPEAKER_01: It's an exciting process.
• 21:54
  SPEAKER_01: The writing is not even that hard.
• 21:55
  SPEAKER_01: It's the putting it on Amazon or self-publishing that is a nightmare.
• 22:00
  SPEAKER_01: My first book, my wife, thank god, she's my support.
• 22:03
  SPEAKER_01: She took two weeks, like 24-7, is when you do it on Word, not to bore.
• 22:07
  SPEAKER_01: This is the nerd part, not to bore, but when you write a book, it's not hard, easy, it's not uh easy, but just getting it from like the Word to the P the KDP Amazon is a nightmare.
• 22:18
  SPEAKER_01: So it almost was so rough that I almost didn't want to do it again.
• 22:22
  SPEAKER_01: But I you know there's a reason to do it, and you know that's why we have a lot of things planned.
• 22:27
  SPEAKER_01: I want to write, we're writing a kid's book.
• 22:29
  SPEAKER_01: We have one that's fun.
• 22:30
  SPEAKER_01: It's actually might be a fiction where I'm throwing in aliens, uh, zombies, time travel.
• 22:37
  SPEAKER_01: I'm putting everything because that's what's so great.
• 22:39
  SPEAKER_01: I love those things.
• 22:40
  SPEAKER_01: And uh we last night we just not to get off the top, we watched that show, the movie where the silence, I forgot the name where the aliens, and they you can't speak, you know.
• 22:50
  SPEAKER_01: I don't remember, and it was the first the one that just released, and I love that stuff.
• 22:54
  SPEAKER_01: But anyway, so one character will have park in this.
• 22:57
  SPEAKER_01: That's all yeah, but yeah, part of the right fiction.
• 23:00
  SPEAKER_01: I can't even like then to write reality because you're living it, but to write fiction, I don't know how they feel.
• 23:06
  SPEAKER_00: Yeah.
• 23:07
  SPEAKER_00: Well, the thing that comes up for me with that is uh representation matters.
• 23:13
  SPEAKER_00: You know, um, some of the children that I've worked with over the years have either, you know, neurological diagnoses or degenerative diagnoses.
• 23:24
  SPEAKER_00: Um, and I think it's important that we we talk about it, we sit in the discomfort of having to watch somebody's journey and feeling the pain of that.
• 23:36
  SPEAKER_00: And I think sometimes that might be why people turn away.
• 23:39
  SPEAKER_00: It's hard.
• 23:40
  SPEAKER_00: You know, I if I had$10 for every time somebody said to me about the work that I did with kids with multiple disabilities, that must be really hard.
• 23:48
  SPEAKER_00: It must be really sad.
• 23:49
  SPEAKER_00: I'm like, oh my gosh, if you only knew how much joy my day has when I'm working with these kids.
• 23:55
  SPEAKER_00: But I love the idea of creating.
• 23:59
  SPEAKER_00: Books that can reach different audiences to normalize conversations.
• 24:04
  SPEAKER_00: Because when it becomes part of our typical conversation, when we're talking about these disorders and diagnoses, and people become invested in the idea that we should be finding a cure.
• 24:17
  SPEAKER_00: We should be putting our energy towards a cure.
• 24:19
  SPEAKER_00: And like you said, it's not just about the individuals.
• 24:23
  SPEAKER_00: It's not just about Sharon and the millions like her who went through this horrible diagnosis, but it's their families and it's, you know, the generations that don't get to be part of their life that that becomes more of the story.
• 24:39
  SPEAKER_00: So I love that.
• 24:40
  SPEAKER_00: And I love reaching children because I'm sure you know having kids, they're the most accepting bunch.
• 24:47
  SPEAKER_00: You know, you tell them this, this young person needs to use a wheelchair.
• 24:52
  SPEAKER_00: They're like, oh, that's cool.
• 24:53
  SPEAKER_00: How do you make it go?
• 24:54
  SPEAKER_00: You know, they're not, they're not like asking all the questions and making judgments.
• 24:58
  SPEAKER_00: So I think getting kids to understand and normalizing people having to go through it, not in a sense of that it's normal, but that we can we can talk about it and have people feel included.
• 25:12
  SPEAKER_00: Um and I'm also excited to hear about the stories because I think reaching people with a story is always such a great way to explain really challenging topics and being able to relate to people's journeys.
• 25:26
  SPEAKER_00: And I'm just thinking too, when somebody finds out that they have someone in their life who is diagnosed with Parkinson's, they now have resources to go to to know what to expect, how how to feel, to connect with other people who will understand their journey.
• 25:42
  SPEAKER_00: So uh what you've done in in this amount of time since you lost your mom is really kind of incredible, George.
• 25:52
  SPEAKER_00: It's uh you've you've reached so many people and pulled people in.
• 25:58
  SPEAKER_00: And I think your your intention and the meaning behind it.
• 26:03
  SPEAKER_00: Um and I'm sure certainly it it doesn't bring Sharon back, but I think you're creating such a legacy of who she was.
• 26:13
  SPEAKER_00: Um, and you don't need to tell us much about her for us to know how much she meant to you.
• 26:18
  SPEAKER_01: I appreciate it.
• 26:19
  SPEAKER_01: There's uh one thing is uh about Parkinson's, is about five stages and just the fast forward version.
• 26:26
  SPEAKER_01: The first two are it's a movement disorder, it's a fastest growing neurological disease, Parkinson's, unfortunately, in the world.
• 26:34
  SPEAKER_01: And you'll see uh some it differs in people.
• 26:37
  SPEAKER_01: So Michael J.
• 26:37
  SPEAKER_01: Fox has more external tremors, and mother had some more internal towards tilt toward the end.
• 26:43
  SPEAKER_01: It also causes uh issues with the nervous system, uh, so movement such as rigidity and also affects certain parts of the body, also posture balance, so that's the first stage.
• 26:55
  SPEAKER_01: The second kind of moves to where it's a little tougher to walk and balance, but you can still live independently.
• 27:01
  SPEAKER_01: The third stage also is kind of where it's like the tipping point where you might start having a little bit more hallmark symptoms like uh issues eating, bathing, and dressing, but you can still do it.
• 27:12
  SPEAKER_01: So four and five are the big problem.
• 27:15
  SPEAKER_01: Four is where independent is really impossible, almost where you can fall.
• 27:19
  SPEAKER_01: So that's the toughest.
• 27:21
  SPEAKER_01: And then the last one, which is the toughest to me, was when my mother had uh so she was had Parkinson's for several years, and then the last four years is when I said I took over one night.
• 27:32
  SPEAKER_01: Well, she went to a special pro program for people at Parkinson to try to you know fix it or cure, which didn't work because uh that night I got a call at 4 a.m.
• 27:42
  SPEAKER_01: to rush over to her home, and she came back the same morning from the obviously that uh you know uh area in the university, which I don't name because it's not their fault, it's a disease.
• 27:53
  SPEAKER_01: And I found her moving the furniture out of her home at 4 a.m.
• 27:56
  SPEAKER_01: and asked what was going on.
• 27:58
  SPEAKER_01: She was frantic and said there were she thought there were Nazis inside her home.
• 28:01
  SPEAKER_01: They were gonna harm her.
• 28:02
  SPEAKER_01: So I rushed to the emergency room and they saved her life, they said.
• 28:06
  SPEAKER_01: But that was like the downhill spiral from that moment, those four years, and that's when I took over as her caregiver.
• 28:14
  SPEAKER_01: But the that night was something I never heard of delusions and hallucinations.
• 28:19
  SPEAKER_01: And from the next four years, it was just horrifying.
• 28:21
  SPEAKER_01: Like again, try not to depress people on a Saturday morning, but she saw animals, which sometimes were cute because she had giggle like that she had in the past that she thought were in the room with us.
• 28:32
  SPEAKER_01: She saw her parents.
• 28:33
  SPEAKER_01: She didn't know uh who was actually there at times and who wasn't.
• 28:38
  SPEAKER_01: She also had a big fear of the people, caretakers who we paid.
• 28:42
  SPEAKER_01: We were spending four twelve thousand dollars a month for a while just to keep her.
• 28:47
  SPEAKER_01: Uh I knew she was, you know, had Parkinson's and the other things, but I didn't want her to fall because if she fell, I knew that would end everything.
• 28:54
  SPEAKER_01: So we spent tremendous amount just to, it's almost like I feel like they were just there to babysit.
• 28:59
  SPEAKER_01: They weren't trained properly.
• 29:00
  SPEAKER_01: We had to fire, I talk about in the book, we had to fire like seven organizations, over a hundred AIDS.
• 29:05
  SPEAKER_01: Finally, towards the end, we found two that were heaven, but it was kind of too late.
• 29:10
  SPEAKER_01: It's not easy in Florida to find, you know, good uh caregivers.
• 29:14
  SPEAKER_01: But uh those were the toughest moments.
• 29:16
  SPEAKER_01: I remember I wrote about it once my my daughter uh was sitting on the bed with my mother and me on a Sunday morning, and my mother started hugging the pillow and saying how much she loved Brooke.
• 29:27
  SPEAKER_01: That was her name, my daughter's name.
• 29:29
  SPEAKER_01: That's her name.
• 29:29
  SPEAKER_01: And uh we me and Brooke looked at each other, like kind of like didn't laugh, didn't cry, but just kind of confused, and it left there.
• 29:37
  SPEAKER_01: And that's why I do one day I'll write a book about kid children because I still today have trouble explaining what the heck happened, you know, how her best friend, her grandmother was taken, you know.
• 29:48
  SPEAKER_01: My uh not to get too long on this, but in another story in the book, my mother uh had two boys, so she always dreamt of having a daughter.
• 29:56
  SPEAKER_01: So when I'll never forget my mother's face when she was crying when we were all my wife and I said our firstborn is gonna be a girl, and she just went out bought dolls and dresses, and she's always like okay.
• 30:08
  SPEAKER_01: I think I would buy her best moment more than having me.
• 30:11
  SPEAKER_01: But other other things in stage five is uh loss of smell, poor reasoning, weight loss, which was really sad.
• 30:18
  SPEAKER_01: Vision, but sleep was bad.
• 30:20
  SPEAKER_01: My mother didn't sleep for the many years, and also to be honest, one of the worst things to even talk about, which I did a whole show on myself, is the stomach and the gut, which uh is really destroyed from the medicine.
• 30:33
  SPEAKER_01: But she had we had the nurses come and things with them a male, I couldn't even get much involved, which is another show about the lack of male caregivers, which I didn't even realize until someone asked me to be a speaker at a male caregiving event, the first one ever, a few months or a year ago.
• 30:49
  SPEAKER_01: So, you know, there's a lot out there.
• 30:51
  SPEAKER_01: Uh you know, they just uh we're still learning my journey and my mother's over, but we don't know if I'll get Parkinson's.
• 30:57
  SPEAKER_01: They think it could be, which I agree, environmental.
• 31:00
  SPEAKER_01: Mother had a nice home, and uh they you know, she had termites at one point and mold, and the stuff they sprayed back then, it's horrific.
• 31:08
  SPEAKER_01: Like I think that did it.
• 31:09
  SPEAKER_01: You know, today I kind of thought to myself, you know, we have you know a home and they don't even come in the house now, which is actually incredible.
• 31:17
  SPEAKER_01: Like bug companies do not go, at least in Florida, into the home.
• 31:20
  SPEAKER_01: And I think that's why, but they only spray the external.
• 31:24
  SPEAKER_01: We haven't had any bugs, but I remember, I mean, they used to come in the house, even though they said it's environment friendly, which you know, we trust these people.
• 31:31
  SPEAKER_01: I don't know, you know, they're not even regulated very well as a lawyer.
• 31:35
  SPEAKER_01: Uh, and also in the U.S., there's something called paraguay, which is used in a lot of these poisons, and it's not even banned in the US, but it's banned in China.
• 31:43
  SPEAKER_01: So I don't understand a lot of what our politicians are thinking or why, but we all need out there one step to get involved is to contact your legislator.
• 31:52
  SPEAKER_01: The national plan, Dan Parkinson, might have passed, but now we have to implement it.
• 31:56
  SPEAKER_01: So it really means not much to me if you pass a bill.
• 31:59
  SPEAKER_01: It's how it's put into play.
• 32:01
  SPEAKER_01: So we need to still be on top of them.
• 32:04
  SPEAKER_01: Uh and as a caregiver, uh, my tips are take care of your health first.
• 32:08
  SPEAKER_01: I didn't do it, so I'm a hypocrite and I'm proud of it.
• 32:11
  SPEAKER_01: But I didn't do it with my mother because she only felt comfortable with me around, and I knew I didn't know.
• 32:16
  SPEAKER_01: They tell you that you don't die of Parkinson's, you die with it.
• 32:19
  SPEAKER_01: So I thought she was gonna live till 85, no problem.
• 32:21
  SPEAKER_01: But all of a sudden she's almost at her door at her endpoint, and I don't know to this day, I don't understand why the doctors don't either.
• 32:30
  SPEAKER_01: Uh so people do live till 90 or more with it.
• 32:33
  SPEAKER_01: They don't die of it, they die with it.
• 32:34
  SPEAKER_01: So I don't understand, you know, why they progressed so quickly.
• 32:38
  SPEAKER_01: Maybe the medicines weren't right, the doctors weren't right, or they weren't giving it right.
• 32:42
  SPEAKER_01: You know, the people we hired, who knows?
• 32:44
  SPEAKER_01: But I don't think I could have done much better because I don't have a medical background and never prepared for something like this, you know.
• 32:51
  SPEAKER_01: I can't really take a class on caregiving.
• 32:54
  SPEAKER_01: So that was a comment.
• 32:56
  SPEAKER_01: And they don't think it's genetic, but I do think again it's environment.
• 33:00
  SPEAKER_01: Uh but you know, it's just tough because there's no cure, and that's what really and also last comment is uh before I let you take back or sorry, is uh the media.
• 33:11
  SPEAKER_01: That's the big problem I have, is it's just not enough attention.
• 33:14
  SPEAKER_01: I've written 15 beautiful letters on attorney, police, pre Professor Letterhead.
• 33:19
  SPEAKER_01: I think it would do it.
• 33:20
  SPEAKER_01: Didn't do I I did it three separate times for Parkinson's a Wernitch month and didn't get any responses.
• 33:25
  SPEAKER_01: So, you know, it doesn't you never stop fighting.
• 33:28
  SPEAKER_01: But that and politicians and even celebrities, you know, we've been lucky enough to have messages from Jack Osborne because Ozzy has it.
• 33:35
  SPEAKER_01: Kenny G wrote a song, my mother's favorite musician in her life, which I wish she had was here to see it.
• 33:41
  SPEAKER_01: He actually played a song and said a message lately.
• 33:43
  SPEAKER_01: We had Leah Thompson from Back to the Future who gave me a message and a few others, but it's on uh the website together for Sharon.
• 33:51
  SPEAKER_01: You know, it's growing bigger than I could ever dream.
• 33:54
  SPEAKER_01: And in a way, I'm grateful, but I'm not because you know I wish we could shut it down tomorrow and find a cure.
• 33:59
  SPEAKER_01: Um yeah.
• 34:02
  SPEAKER_00: Oh my gosh, that's such a that's such an honest answer, George.
• 34:07
  SPEAKER_00: It's it's great.
• 34:09
  SPEAKER_00: It's everything you dreamed of for building something so other people don't have to experience what you did.
• 34:16
  SPEAKER_00: Um, but you'd also love to shut it down.
• 34:19
  SPEAKER_00: So because there's a cure, we don't have to worry about it.
• 34:22
  SPEAKER_00: I think that's really interesting, the perspective that you had on environmental issues and um the generation that your your mom was part of.
• 34:34
  SPEAKER_00: So much um exploration with chemicals and uh additives and things that were just introduced to make life better, that better living through chemistry, um, without the knowledge of how that those chemicals were going to have an impact on people's bodies, their nervous systems.
• 34:55
  SPEAKER_00: So um we still have such a long way to go.
• 34:57
  SPEAKER_00: I agree with you on that.
• 34:59
  SPEAKER_00: I think we we take for granted what we allow in our environment.
• 35:04
  SPEAKER_00: So um we could be on to something there.
• 35:07
  SPEAKER_00: I am so grateful that you came today.
• 35:10
  SPEAKER_00: It means so much to me for the work that you're doing.
• 35:14
  SPEAKER_00: Um, and I really encourage, as you're listening, please go to TogetherforSharon.com, you know, follow George's journey, read the book.
• 35:24
  SPEAKER_00: As you said, the ebook is going to be free and released uh digitally.
• 35:30
  SPEAKER_00: So it's there's no excuse for not reading these stories and sharing.
• 35:37
  SPEAKER_01: The interview will be free, I hope the ebook, but not the first one.
• 35:41
  SPEAKER_01: Right.
• 35:41
  SPEAKER_00: Yeah.
• 35:43
  SPEAKER_00: Yeah, absolutely.
• 35:45
  SPEAKER_00: And and support by purchasing the book, A Son's Journey, um, to learn a little bit more about Sharon.
• 35:53
  SPEAKER_00: Obviously, she was an amazing human being and a mom and a grandma.
• 35:58
  SPEAKER_00: Um, and you're you're doing amazing work um in her honor, George.
• 36:04
  SPEAKER_00: So um any final words for the listeners?
• 36:08
  SPEAKER_00: Anything you'd like them to do?
• 36:10
  SPEAKER_01: Yeah, I forgot to mention them.
• 36:11
  SPEAKER_01: No, if you are diagnosed with Parkinson, the number one way to uh not, you know, we can't cure it, but to reduce the progression or lower it is exercise.
• 36:21
  SPEAKER_01: So uh it's um we'll probably spend 10 hours just on that, but exercise, exercise, exercise.
• 36:26
  SPEAKER_01: For the caregiver, it's take care of your health exercise too.
• 36:30
  SPEAKER_01: And even as an advocate, I don't do that because I think that I don't want to see people fighting that I'm not gonna stop till we find a cure that I don't recommend that for everybody.
• 36:40
  SPEAKER_01: And then finally, uh just have a little message for you and the listeners.
• 36:43
  SPEAKER_01: Uh we love you, we support you, we care a lot about you, and you're never alone.
• 36:48
  SPEAKER_01: I, along with your amazing hosts, will advocate for you.
• 36:50
  SPEAKER_01: And together I feel our voices are so much stronger.
• 36:53
  SPEAKER_01: And finally, uh I always say I'm just getting started because if you do have a chance to read the interviews, I mean they're all free right now at togetherforshrend.com.
• 37:02
  SPEAKER_01: You click interviews, it's kind of overwhelming because it's almost a thousand now and they're all there, but a book is like kind of you have it and it's nice.
• 37:09
  SPEAKER_01: But uh, so you know, they're out there.
• 37:12
  SPEAKER_01: But I every time I see a new story like last week, I couldn't believe four gentlemen rode around the world and raised awareness.
• 37:20
  SPEAKER_01: And I think they raised like 40 million dollars.
• 37:22
  SPEAKER_01: That's one area I can't.
• 37:23
  SPEAKER_01: I'm not very good at the uh fundraising.
• 37:25
  SPEAKER_01: I've tried.
• 37:26
  SPEAKER_01: We've done about$30,000 from our own family.
• 37:29
  SPEAKER_01: I wish we could figure out how to get even a dollar or even 50 cents or a quarter from everyone in the world would change the world.
• 37:36
  SPEAKER_01: It would really help find a cure faster.
• 37:38
  SPEAKER_01: But that's one area maybe they can you can all help jump on.
• 37:42
  SPEAKER_01: And if you go to Together for Sharon, there's a donation link.
• 37:45
  SPEAKER_01: But there's four or five organizations I support, I support everyone in this cause.
• 37:49
  SPEAKER_01: But you act, they've been so beautiful to make a link from their organization in Emory, my mother.
• 37:55
  SPEAKER_01: So all the money goes to them.
• 37:56
  SPEAKER_01: I have nothing to do with it.
• 37:57
  SPEAKER_01: We don't accept anything except that again, no one's alone and we want a cure.
• 38:02
  SPEAKER_01: So keep fighting and never give up, and feel free to reach out.
• 38:06
  SPEAKER_01: So if you go to together for sharing.com, it's just me.
• 38:09
  SPEAKER_01: Everyone thinks we're foundation or not, it's just me.
• 38:12
  SPEAKER_01: And I'm on every social media.
• 38:13
  SPEAKER_01: I don't, you know, some days I feel like that's it, I can't do anymore.
• 38:16
  SPEAKER_01: But then speak to you, and I've already coming up with a million new ideas, and I want to thank you too for your background because actually, occupational everything is incredible for Parkinson's too, for helping speech for just uh everything.
• 38:30
  SPEAKER_01: So uh we need more amazing people like you in the health care and medical field, because again, that could be a topic for another day.
• 38:38
  SPEAKER_01: But I feel that this conversation today, we're gonna share it around the world, add it to the page, but it can't just end today, has to continue to be shared.
• 38:46
  SPEAKER_01: So, everyone, please support the show and support your again, amazing host, because if we share this around the world, we'll become closer to a cure.
• 38:55
  SPEAKER_01: So, thank you again.
• 38:56
  SPEAKER_01: And uh, we send our love and support to everybody after.
• 39:00
  SPEAKER_00: Thank you so much, George.
• 39:01
  SPEAKER_00: So go to TogetherforSharon.com.
• 39:04
  SPEAKER_00: Everything is there.
• 39:06
  SPEAKER_00: I'll link it in the show notes so it's an easy click.
• 39:09
  SPEAKER_00: Whatever you can do, donate, purchase a book, share the message, and of course, share this interview so people can learn more about George, his mom, the book, um, and what you can do.
• 39:21
  SPEAKER_00: And I thank everybody for being here, for listening.
• 39:25
  SPEAKER_00: Um, and keep fighting.
• 39:28
  SPEAKER_00: Don't stop and see George as an example of how you can take something challenging and be resilient and make a big difference.
• 39:39
  SPEAKER_00: All right, everybody, take care.
• 39:41
  SPEAKER_00: Bye.