How to Advocate for Parkinson's Disease as a Family Caregiver

Ever Wondered How Deep the Caregiver's Journey Goes?
Welcome to our latest episode, where we explore the heartfelt and resilient journey of a caregiver navigating the challenges of Parkinson's disease.

How to Advocate for Parkinson’s Disease as a Family Caregiver

0:00:00 Introduction: Dr. George Ackerman's Mission
0:03:04 George's Personal Connection to Dementia Caregiving and Parkinson's Disease
0:05:26 The Impact of Dementia Hallucinations and Delusions
0:12:06 Challenging Symptoms and Difficulties of Caretaking
0:14:33 Finding Hope and Support in Sharing Journeys
0:20:39 Embracing Animals and Faith for Support
0:21:22 Supporting Parkinson's Foundations and Fundraising Efforts
0:23:27 Misconceptions and Stigma Surrounding Parkinson's Disease
0:25:16 Heartbreak and Frustration with Unresponsive Organizations
0:27:29 Reflecting on the Journey and Offering Advice for Others
0:29:31 Dedication and Support for Parkinson's Caregivers
0:31:31 The Conversation Podcast

The story begins with a son's devotion to his mother, who battled Parkinson's for 15 years. The final years were particularly challenging, marking a significant shift in their lives. This transition from child to caregiver reveals the deep emotional and practical struggles encountered daily.

Navigating the Unpredictable World of Parkinson's

Parkinson's disease is not just a physical condition; it encompasses a spectrum of challenges, including hallucinations and delusions. Our storyteller shares poignant experiences that highlight the emotional toll of these symptoms, both on the person with dementia and the caregiver.

Innovative Approaches to Caregiving

In coping with these challenges, Dr. George Ackerman explored various approaches, from traditional medical treatments to alternative therapies. This exploration underscores the need for adaptability and creativity in caregiving.

The Power of Community and Shared Stories

One of the most striking aspects of this journey is Dr. George Ackerman's commitment to sharing his story and building a community. Through his platform, he connects with others worldwide, sharing experiences and offering support. This sense of community is a beacon of hope and solidarity.

Lessons Learned and Future Aspirations

Reflecting on this journey, Dr. George Ackerman emphasizes the importance of continuous learning, adaptation, and the quest for more awareness and understanding of Parkinson's disease. His dedication extends beyond personal experience to a broader mission of supporting research and advocating for better care.

Conclusion: A Message of Hope and Solidarity

This episode is more than just a story; it's an invitation to understand the profound journey of caregivers. It's a testament to the resilience, love, and unwavering commitment of those who stand by their loved ones in the face of daunting challenges.

To our viewers and listeners: How have your experiences with caregiving shaped your understanding of resilience and empathy?
Share your thoughts and join the conversation.

Dr. George Ackerman is from Brooklyn, N.Y. Now residing in Florida, he works in the fields of law, police, and education. George lost his mother, Sharon Riff Ackerman on 01/01/2020 due to Parkinson’s Disease.

George wanted to honor his mother and continue to help in the Parkinson’s awareness cause and did not know how to bring change.

With my family, we started TogetherForSharon® as a family for the purpose of keeping my mother, Sharon Riff Ackerman’s, memory alive and to share the message of Parkinson’s Awareness and hope for a cure.

Today https://www.togetherforsharon.com/ reaches thousands of individuals across the country for PD Awareness.

George currently interviews individuals throughout the Parkinson’s community including various foundations, caregivers, and Parkinson’s warriors to help share their stories and causes.
Website: https://www.togetherforsharon.com/
Email: [email protected]
LinkedIn: https://www.linkedin.com/in/george-a-00871a82/
TikTok: https://www.tiktok.com/@togetherforsharon1
Facebook: https://www.facebook.com/togetherforsharon112020
Twitter: https://twitter.com/togetherforsha1
Instagram: https://www.instagram.com/togetherforsharon/
& Threads
YouTube: https://www.youtube.com/channel/UCIeBLOelhaLQNvgeNMzu-5g

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Transcript

Introduction: Dr. George Ackerman's Mission

[0:01] Welcome to Dementia Caregiving for Families. I am very excited about our next guest here today.

His name is Dr. George Ackerman. He is not a doctor of medicine, but he is a PhD type doctor.

And George is near and dear to my heart because he has a mission to bring his mother's story story to the world related to Parkinson's disease.

[0:32] And I don't talk about it a lot because my grandfather has passed away many, many years ago, but we do have a family connection to Parkinson's disease.

It was one of the very first specialty certifications that I got as an occupational therapist, as well as for many years when we lived in Springfield, Missouri, I served on the Parkinson's board of the Ozarks.

And a very little known fact about Lisette is if you go look at, there's a book put out by the National Parkinson's Foundation that I was an editor on from maybe 20 plus years ago.

So my one claim to fame in authorship related to being an editor of of a Parkinson's type of book.

So listen to today's episode.

Welcome to Dementia Caregiving for Families

[1:31] Hey there, success seeker. Welcome to Dementia Caregiving for Families.

Do you feel overwhelmed with the daily struggle of dementia caregiving, looking for an easier path?

You're in the right place. On this podcast, we teach you the skills to simplify caregiving.

We unravel the mystery of dementia and guide you through the often difficult behaviors.

I'm Lizette, your host, and fellow family caregiver.

As an occupational therapist, I bring my professional and personal experience to this community.

Here we speak the truth, but without the verbal vomit.

I know you will find value in today's program, so buckle up while this flight takes off.

[2:25] Well welcome back to today's program called dementia caregiving for families and i'm super excited to have a wonderful new guest he's somebody i've been around kind of fringely i've i've heard of his mom and his mission george's mom had parkinson's disease and since parkinson's disease has a very strong component of dementia over time for certain people.

I thought it would be a good idea to highlight dementia and dementia caregiving and Parkinson's disease in this episode today.

George's Personal Connection to Dementia Caregiving and Parkinson's Disease

[3:04] Plus, I have a family connection with Parkinson's, so I have a very strong love of helping people who are struggling with Parkinson's disease.

So thank you for being here today, George. I'm so excited to hear your story.

[3:21] Thanks. And I really appreciate your time and your viewers. It's an honor to be able to share our story today, but also send my love and support to you and all of your viewers for all the struggles.

But I try to take the negatives and again, bring it a little bit of positive light on the subject.

And I do find we've become family and all the viewers because we're all in this together.

Unfortunately, my mother passed approximately four years ago.

She had Parkinson's for 15 years, but the worst came towards the last three to four years when I really was thrown into it.

You don't sign up really to the course in law school for caretakers.

And even if you took one, you still can't be prepared.

My mother was very independent. She lived alone. She was hardworking.

She sacrificed a lot in her life so I can become the man I am today.

So she didn't really want to share Parkinson's with us.

She had my father, they were divorced, but he helped her.

And I'd say for about seven, eight years, she had it, but we never, I didn't even know what it was.

I didn't really think about it. She had a little trouble with her left arm was stiff.

So towards the seventh year, it was trouble cutting food, but she still was able to live in a normal light and not let me really know about it.

I kind of regret that looking back because I wonder, or a what if, but you can't really do that all day.

So I was able to, unfortunately, we tried everything.

[4:45] We would need hours to talk about the different things. But unfortunately, she went to a special program where it was like a trial thing.

And I think that night she came home, they might've changed the medication too drastically.

And I had a call to rush over to her home at 4 a.m.

And I never would have ever, my life changed that night. That's when I took over her whole life because she was moving her furniture out of her home and I think the hallucinations and delusions from dementia that set in and she thought people were inside the house harming her she was moving her furniture out and I rushed to the hospital they said I saved her life, But in a way, that was where it really started getting worse.

The Impact of Dementia Hallucinations and Delusions

[5:26] One last thing is I went back to her home and I was picking up her clothes.

And this is the time where I knew it was really heartbreaking.

[5:34] Like we all use post-it notes, the little yellow notes.

She had put them around her room and she wrote on the notes names of dogs and people who might not even be alive anymore because she couldn't differentiate at that point who was still with her.

And she was just seeing things. And again, it was so heartbreaking and shocking that, you know, any loved one or anyone, for that matter, has to endure that.

And in a way, she was alone.

But then I also felt alone as a caretaker because she looked to me to help find a cure.

And obviously, we tried everything and I wasn't able to do that.

So my mission now with TogetherForSharon.com is really to spread awareness in my mother's memory and mine.

But it's not just about us anymore. more it's about a lot more people and i want to try and share their stories too sure so a quick clarification or a couple of clarification questions in your journey with your mom um it sounds to me did you know the whole 15 years that she had parkinson's or did she hide it for the first little bit but if she's hit it more just to her my father i think unfortunately and it's it's reasonable.

Some people are ashamed of it. They don't know what their future brings.

[6:55] They don't really know what else to do. But every day was something more.

When I took over, I mean, it was like...

[7:03] Being hit over the head like down like a hammer and a nail every time i wanted to try something to help one thing it seemed like another issue came up so we even hired several companies like caretakers i don't know what you really call them that but they were more like just kind of babysitting she didn't sleep well so and that was costing us 12 000 a month but she was telling me they were harming her so i didn't sell video cameras in her house and i luckily they weren't but there was one that neglected her when she needed help so luckily we were able to see that right uh i always swore and we never did thankfully put her in a home so we kept her in her own home that was not easy but and then we actually bought a home uh when she was still alive she didn't make it and now in my new home which would have had a room for her i often walk by it and i'm sad because that was her room so i just in a way to between us and everyone listening i don't know if i could I could have handled her at the point we were at with the hallucinations and kids.

[8:06] I have three children, her grandkids, and we love her. There were some points where, you know, you have like the little people in your head, one saying good, one's evil, and you're like, keep helping, but you can't handle it.

So again, I went through a lot of stress, burnout, lost a lot of my own relationships, but I would still do it all again to help my mother in any way I could.

Sure. so for years you didn't know that she had it she was hiding it from you and then it sounds like you mentioned overnight turning into a caregiver because she had a medical emergency.

[8:41] And was the medical emergency was that when she started to have the hallucinations or did the hallucinations come after she had been in the hospital and they messed with her medicine and then she came home and had them.

[8:58] Yeah, I think she didn't hide it from me. I just think she didn't want us to worry.

And it didn't affect her so badly that she couldn't, you know.

She went from that time I saw her, like, from a cane. She loved to walk.

She went from walker, like a walking person, independent, loved fitness, going to a cane for a year, and then from the cane to the walker, which was hard, and from the walker to the wheelchair, and then finally bed down.

And I think, again, one of the hardest things in my life was taking her car keys away because it became, you know, a danger to herself and other people.

And, you know, anyone like you and I, our independence is all we have.

You want to be able to have the power to go get a haircut, go get your toes done.

When you take that away, it's, you know, life changing.

[9:46] So that was a tough one. But the bad, the worst things I think did come when after that day at that program, again, on a regular visitor, it was actually a trial.

We were hoping for the best, but it turned out it wasn't. And then for everyone, but I don't blame the doctors or the program, because we can't control Parkinson's.

It also affects every person in dementia so differently.

Michael J. Fox is a great hero for awareness in Parkinson's.

And he has external tremors. My mother didn't have those noticeable ones towards the end.

He did start getting dyskinesia, and that's where the endostonia, where the curling of the toe.

Again, you're more in the medical profession than me, but I could just speak from my experiences with my mother and I.

And then I notice people now when I go to the doctor for my own health, I see some older people.

[10:44] Doing kind of moving, but not tremors. And that's what my mother, it almost now I can see Parkinson's on people because of the experiences I've had.

And again, I can, we don't know the causes, so I can still get Parkinson's also.

They think it could be, they don't know if it's genetics or environment, or it could even be, you know, contaminated water, the Paraquai, or even Camp Lejeune are big lawsuits.

As an attorney, I've been actually doing a lot of research on that.

I do feel my mother lived in the, for about 15 years in a home that was beautiful, but didn't really keep up with it.

She had mold, she had termites. So back then, who knows, you know, the spray that they use today, they say it's more environmental friendly, who knows if that's true, but I think a lot of that did also cause, could possibly potentially have caused Parkinson's.

Yeah, for sure. Like there's a lot of the, there, there is a familial type of Parkinson's, but it's not as common as the Parkinson's that is probably due to other factors that I don't think we're entirely sure of exactly what causes them.

You had mentioned earlier about her hallucinations and that that was something that was difficult for you to manage with her. You want to tell me a little bit about that?

Challenging Symptoms and Difficulties of Caretaking

[12:06] I'd say out of all these symptoms, and unfortunately, there's so many, even from the stomach, where she had to have horrible stomach issues and nurses over 24-7 couldn't go to the bathroom, the constipated, because all the medicines do that.

I had my own experience with back surgery, and I know exactly.

I mean, I felt like I was giving birth, which I can't, but it was horrible.

I think that was worse than the surgery for me.

[12:29] So I try not to remember this one specific instance, but it's the one that kind of shines. My mother was sitting on her bed with my daughter at the time.

She was six, her grandchild, Brooke.

And my mother loved Sundays with the grandkids and few little bubbles.

Sometimes I walk by the backyard and I think of those times.

You can't do them anymore.

[12:50] So she was sitting on the bed. She started hugging her pillow and saying how much she loved Brooke.

And Brooke and me just looked at each other because it wasn't Brooke she was hugging. It was a pillow.

And I, again, what do you tell a child? child she looked at me and smiled in a weird way and we just moved on you know you come to accept those things but those were the most difficult because i couldn't explain it to my kids i couldn't explain it to myself i really wanted to try just help my mother and i didn't ever lie to her and she would ask me oh george i want to live to be at brooke's wedding someday and i just didn't know what to say but those are the types of things but to me the delusions and hallucinations got worse.

I had to remove her phone at some point because she started calling the police because she was scared.

The caretakers were harming her, but they weren't. I had to remove a weapon, a gun. I'm a police officer.

I trained her. She actually was fun. She went once or twice to the range and she lived alone.

So she had a weapon, but I had to take it away after that night because I was, you know, I could show up and that could lead to bad things.

So taking away things that you have a right to. It was a very big struggle for me.

Also taking over her life with her banking.

[14:01] Thankfully, she was an incredibly, Not just independent, but what's the word, like, just an incredible person, planned.

She already had planned her whole funeral, which was horrible.

So when I had to go through all that, and this was unexpected because she was only 69, and we were told by every doctor you don't die from Parkinson's, you die with it.

So most lived to 85 and even to 100.

But my mother had no other health issues. So these are some of the battles that I just continue to have. I've been, like I said, I'm very honest and open.

Finding Hope and Support in Sharing Journeys

[14:33] I talk about everything and anything.

I'm 6'2", 200 pounds and policing.

The other day, I actually had a little talk with someone on a podcast.

I left the podcast so excited because it helps me still cope.

Went into the office with my wife and I started crying like a baby.

Even though it's been four years, it still breaks my heart every day.

But because of individuals like you and your audience and really reaching people, not just in the Parkinson's field, but people outside that don't have Parkinson's, people that don't have dementia, people that aren't caretakers in this area, we don't get everybody involved throughout the world.

We're never going to find a cure. And the last thing is, so we started together for Sharon.com.

[15:17] My purpose was to have something to remember my mother and to share my journey.

But i realized there were about a million people in the u.s with parkinson's but then i discovered a few months ago there are about 10 million in the world i decided just like a little light bulb and the cartoon too popped up and said george this is not about you and me anymore this is about everybody so in the last four months i've interviewed over 400 people throughout the world from africa to uh from france spain italy australia i mean you name it i really china I try to target every country and share their journeys, whether they're diagnosed, whether they are caregivers, whether they're foundations like the Michael J. Fox Foundation.

Because I really think that the only journey that also is disheartening is the one that I don't know about or the one that I can't share.

And it just gets me excited every morning. A new one pops up, a new story, and it's like someone's life. And really, that's why that's what continues to push me and to drive me.

I was going to tell you today which one popped up, but it's taking a little bit.

Maybe I can get back to it a little later. You can go ahead.

[16:31] I hear it. This is Leslie Davidson. It's hard to show him there.

If you go to www.togetherforsharing.com and you click interviews, under that link, you can actually share your journey.

So if anyone like you would like someday to do, if you click on that, so Leslie's article comes up.

She's a 72-year-old retired teacher, and she's actually traveled the world.

But her husband was diagnosed in 2011 with Parkinson's and dementia.

So that's where this started.

And that's now where we turn from my story to hers. And if I could, again, just shed some light, even now, we just said her name and people read her story and she can share it and people share it. It's just a beautiful thing.

Yeah. So the intent behind TogetherForSharon.com is to continue to expand and bring to light the stories of people living with Parkinson's. Fundamental.

[17:37] Yep. You said your mom was young when she passed away.

Yeah, she was only 69. So I feel robbed.

I feel like she was robbed. Because I always thought of, we bought her her own house, a little one. It was down a little lake.

And I always thought for 10 years, at least she could enjoy her time with the grandkids and just not worry about life.

[17:57] Unfortunately, all her retirement money had to be wiped out by Parkinson's.

We spent, I mentioned earlier, spent $12,000 a month just for her caretaking.

That doesn't even count for the food and the living expenses.

Is we also have an amazing thing that supported my wife.

My wife and my mother were best friends too.

Luckily, sometimes I hear that's not the case, but she tried hard too to help my mother towards the last year.

She brought in people to do manicures, to do her hair.

Some days were tough though. She didn't want people. We also have music therapists.

One nicer story, which if you go to togetherwithsharon.com, scroll to the bottom of the main page, you'll see a video.

I'm from Brooklyn, New York. My mother used to bring me to Broadway when I was a child. And we saw the movie, the Broadway show Cats.

One of her favorite songs was Memory.

So I've been playing, I played guitar for 15, 20 years just for fun.

Well, the week before my mother passed, the music therapist showed up.

And together we played Memory for my mother.

And unfortunately, at the end, you might not hear it, but she says thank you. And I loved it.

That was the last time she spoke at all.

The last seven days of her life, she just had a heartbeat but didn't function.

And that's another issue is in Florida, we don't have something called death with dignity.

I find we treat our animals better than our loved ones and that really has to change.

[19:25] So you said something really interesting about the music and how much it brought her back, even if it was just for a short period of time.

I love that you did that because that's one of the parts of our brain that actually remain, that we can tap into later in either a dementia process or even a Parkinson's process, like true just Parkinson's without dementia.

I actually, when I work with people who have Parkinson's, my colleagues would always look at me like I had grown another head because I'd be walking down the hallway with them doing what we call the big fancy words of rhythmic auditory stimulation, clapping my hands, trying to hold on to them, clapping my thigh, trying to hold on to them and singing to help them be able to move better and walk better.

So the music is a very important part of being able to help somebody with Parkinson's be able to actually move a lot better if you tap into their brain using music.

So thank you for sharing that. I find that fascinating.

Embracing Animals and Faith for Support

[20:39] Also, they have animals. I love the idea. They didn't have them at the time, unfortunately, but animals to come over.

Also, like faith individuals, like your rabbi or priest.

But what I discovered, and again, when I was going through this, I felt really alone.

I didn't know everything was all out there. I have an area of resources and partnerships.

I partner with a lot of groups for dementia, for dystonia, for fitness moving, like what you were saying, music therapy, and also different big groups.

And I actually started a new section for researchers and scientists that I interviewed because they're leading the way to groundbreaking research.

Supporting Parkinson's Foundations and Fundraising Efforts

[21:22] Now there's a place where everyone can just go and see different foundations.

Everything's in one place. I don't charge. I do not allow money.

I don't accept donations.

We support, you can even see donations. We support the American Parkinson's Disease Association, the Parkinson's Foundation, and the Michael J. Fox Foundation.

But there's so many more that I've interviewed. And we've donated and raised about $10,000 in four years for the American Parkinson's Disease, APDA.

We do their walks. We hand out bands for free.

Sad, though, in 2023 where people sometimes think you're not real or something because you don't want anything in return.

Everyone seems to want to. When we do the walks, it's funny.

We're in the middle. We're at a little table, and there's pharmaceutical companies everywhere selling things.

[22:13] Sometimes people are scared to come over, but when they realize what we're there for, they actually hug and kiss us, and it's heartfelt.

I remember recently I got a little award, which I didn't expect for fundraising and things.

But one of the things that was amazing is there was a gentleman who had a veteran.

He was a veteran. He had a military hat, and he had Parkinson's, but he was wheelchair-bound.

He couldn't speak at all. You know, when I spoke to him for a minute, he just smiled and he shook my hand.

And that's why we do what we do. And I always say I'm just getting started, even though I've been doing it for a while.

But I'm working on a few books, working on my mother's journey and my journey.

I really want to change the world of background law enforcement and law.

In law enforcement, they're not trained at all. It's not their fault.

It's not ignorance. It's just the timing or they don't realize.

But if someone gets pulled over and shaking late at night, a law enforcement officer might not be aware of that.

And I don't want it to ever end poorly because they just weren't aware.

And I don't see much out there for that. I've been doing, again, a lot of research.

[23:23] Oh, I think you're 100% correct. I don't think there's anything because the

Misconceptions and Stigma Surrounding Parkinson's Disease

[23:27] first thing they're going to think of is this person's on drugs.

Right, or drinking. And sadly, I know someone on TikTok, another person who has Parkinson's, she was actually banned. And this is a week or two ago on TikTok because people reported her doing drugs and drinking because she shakes when she does a TikTok.

But she earns a living on the TikTok live. I don't know how they I don't do that.

But I was sickened when I saw that. I wrote to her directly and said, I'm an attorney. I'll help you for completely free.

We'll write to them. I think they finally gave it back. But that's the problem.

It's a big misconception that if you're not aware.

And again, I don't blame people. I just wish we could have more awareness, but doing this talk today really changes the world.

So thank you again for that. Oh, you're very welcome.

I mean, my grandfather had Parkinson's.

So as an occupational therapist, when I first started working.

[24:21] And the area that I initially specialized in was actually Parkinson's disease.

And I did a lot of advocacy for Parkinson's disease in Missouri when we were living in Missouri.

I was part of the Parkinson's group of the Ozarks, which was a not-for-profit. I was on the board there.

I think I interviewed them, or if you ever know anyone, I'd love to still interview them. Yeah, it's been about 20 years since I've been there.

I don't know if I still have contacts there.

Those are the kind of folks, like we were saying, those are what I, that's my goal now is to share.

It took you, you were with them for 20 years. You know, many people are still not aware of it, but we can change that. So that's the one thing.

I mentioned the only people I'm kind of sad about is the ones I don't know about or the ones I email and don't respond, which is understandable.

Heartbreak and Frustration with Unresponsive Organizations

[25:16] Again, they don't know who I am or what we're doing. It literally takes three to four minutes, and that's all I need on the email.

And there's like one or two organizations that didn't want to join in.

And again, those are the heartbreaking ones, because why wouldn't you want to be a part of this one?

Number one, I want nothing in return. And number two, they're really getting free kind of promotion. Absolutely. Absolutely.

[25:39] You know, that's what that's on them, George. You know, if they want to be if they don't want to be able to see what you're offering, because, you know, I think this is a tremendous resource for anybody.

It doesn't even need to just be Parkinson's disease.

[25:54] Anybody could benefit from looking at your site and seeing what resources are out there, because you never know when you're going to be faced with a diagnosis like this.

You know it's not something that you can necessarily anticipate and it doesn't always run in families so you could be the first person in your family or recognize if you know what the signs and symptoms of parkinson's is you can like you pointed out earlier right now that you've seen it you can see it in the community right and i can't tell you how many times i've had patients come in where sometimes not even doctors recognize that this person has Parkinson's disease until one of us as therapy who work with them say, hey, they have the cardinal signs of Parkinson's.

And then they start to look and they're like, oh yeah, you're right.

And so people with Parkinson's are highly underdiagnosed.

[26:55] Well, that's another issue is the underdiagnosed, the misdiagnosed, or the ones that don't even discuss it or maybe not really aware of it right for sure so if you were to make one thing easier if you looking back if you could have made one thing easier for yourself as you were going through the journey with your mom and her parkinson's what what do you want people to know what do you want people to what could you have done differently or what Because you know it now.

Reflecting on the Journey and Offering Advice for Others

[27:29] Like looking back, if you had done something differently, it could have made it easier for you.

[27:35] Unfortunately, I always look while I was going through it. I didn't want to regret anything.

So luckily, we tried it. We tried licensed medical marijuana.

That was funny because I'm a police officer. So I'm not really for it.

I am for those with, you know, ending life type things.

But it didn't work because the distilleries don't talk to the doctor.

So either she only tried the pill that she was either falling over because it was too much or then even worse with delusions and hallucinations.

So I you know I don't regret anything I don't think there was really anything left but a cure I wish I could tell you advice on how to deal with stress and coping but unless it's different for everyone I just wish people would never abandon their loved one always care you know remember what they did for you I'm shocked still that I actually am doing a podcast in the future they wanted me to talk about being a male caregiver and that was like a shock to me because I didn't even think that that was so rare.

And there's no one in my research that's even speaking out like me that's a son of a person.

Obviously, people are out there. But there's literally nothing.

That's why I wanted to write a book because there's not one out there.

I'm probably telling my secret here.

[28:47] No, that's great. I think that's great. And to be very honest, I didn't even consider it because I've worked in healthcare for so long in that regard.

But you are 100% correct.

You know, most caregivers of somebody living with Parkinson's or dementia are female.

Most, you know, it's not. And then of the remainder, it's about 66% are women.

So that's about a third that are men and probably primarily the caregivers in the male category or the spouses, not the sons. Yeah.

[29:23] Yeah, that's sad. But I always say, you know, in every podcast I do on my own, I send my love, my support.

Dedication and Support for Parkinson's Caregivers

[29:31] You're never alone. And I'm only just getting started.

So I literally dedicate 24-7 to this. I'm kind of stressing more about it.

But it helps me cope still.

It's been four years. The holidays are the roughest. But, again, you know, you keep coming up with ideas hard because it's just me.

This is not a foundation.

It's not a company. company could have went their route, but right now I don't, I like what we do like this.

And, you know, when you start getting accounting and this, and then the IRS and all that, it's like, it's just trying to help people.

I don't want to, so that's why we don't accept money.

Leave that drama for the big foundations to deal with.

And I do this again, just because I care. I don't want any other family or caregiver to have to go through what we did.

[30:17] It so where can people find you a great question i'm around 24 7 on every social media but if you go to www.together4sharon it's spelled out no number so together f-o-r sharon.com it'll go right to me it's just me there's no if my wife helps but emails go to me we have a subscription for free so i send out once a month like a little newsletter and things growing it's crazy because I never dreamt it would be. I thought it would just be 10 people.

We had like 50,000 people following.

I use every Instagram, Facebook, TikTok. I never thought I'd be on TikTok.

[30:55] I just started some new things. I'm glad you asked. I started a section on researchers and scientists. Mm-hmm.

Book called n barkinson disease and it's a lot more scientific and not me not being an md or in that field i still like to learn any of the interviews i do out of the 400 there were researchers and scientists i put them especially there because that's really cutting edge uh information yeah we started our own podcast but they're like you know they're a lot of work so i only do one a month but it's my wife and i and it's called the conversation on awareness like Like we're doing, we just talk.

The Conversation Podcast: Interviews with wife and inspiring Parkinson's individuals

[31:31] But the cool thing was the first one was me interviewing my wife.

You got to see the female perspective.

She took care of my mother too. So that's a really interesting podcast.

And just the other night, excuse me, we started the first podcast, in my opinion, in history.

[31:48] It's me and three individuals who are, in my opinion, some of the most inspiring people on social media.

They all have Parkinson's. And it's the first time that I know of, because I did a lot of research again, and I really do the research, I don't just say that, but where we're taking people with Parkinson's and a caregiver coming together alive.

[32:07] I have never seen that before. I see people with Parkinson's, and it's a caregiver, but I've never seen everyone join.

And I'm also in a sad world, which is why I'm also planning, and it's in production, to start a therapy group.

I'll be the host of it, and it's going to be people like me.

So, again, another interesting fact, there are people with Parkinson's and they have support groups and there's people who are caregivers with loved ones who are alive with Parkinson's.

But there's absolutely nothing for someone like me who is still grieving four years later at all.

And I've actually attended and there's some great groups out there.

I went to them and I felt so bad because I can't say my experiences because I don't want to depress people.

You know and i don't and then even they're talking about wills which i did all that i know like there's so many steps you know you have to have a will prepared the funeral all this stuff some of them are tough topics people don't want to talk about for sure you have to talk about the tough topics so those are some of the things i'm planning so you're the um you brought up a really um something i'm very super interested in the support group or the group that you're going to start is that going to be a geographic group or is that going to be an online group.

[33:26] Online and i like online like we're doing because you can reach people around the world and if i, i'm going to look to see i can't remember the name but it's an organization they've been around for a very long time and they're really nice because they uh you know reached out to me, It's PSP. It's like for awareness that they deal more with things, not just Parkinson's, but like Parkinsonians, which are what you mentioned earlier, individuals who are misdiagnosed or people who have similar issues of Parkinson's but don't necessarily have Parkinson's.

And so, again, there's a lot of interesting things coming.

I'm trying not to overwhelm myself, but I feel that if I don't keep doing this and keep pushing that, again, we'll never have answers or find a cure.

And I wish we could find, obviously, a cure for everything, but I have to really concentrate on dementia and Parkinson's. Yeah, for sure.

[34:22] Well, George, thank you so much. You have such an interesting story, and you are doing so many different things.

I am very excited about a lot of what you have told us about, especially your website that people need to go check out, which is www.togetherforsharon.com, not the number four, but www.forsharon.com.

And anybody who is listening or listens to this podcast in the future, if you have Parkinson's or if you're helping somebody with Parkinson's, reach out out to George because he's trying to collect people's stories and highlight your life so that you can truly be recognized for your specialness.

And he does this in honor of his mom. And I'm super grateful for that.

I'm probably going to go on and write a story about my granddad because he is one of the reasons that I got into the whole dementia caregiving space.

Was through Parkinson's and then into dementia.

It's a very natural, unfortunately, a very natural progression.

Not everybody who has Parkinson's gets dementia, though.

So if you have Parkinson's, don't necessarily freak out and think you're going to get dementia.

[35:44] But do know that a large percentage of people actually do develop, especially if you live with it for an extended period of time.

George, thank you so much for your time today.

I have really enjoyed this conversation.

I still have homework I need to do for you, and I promise I will get to it.

It has been a whirlwind as I have started my podcast, so I promise I will get there.

But thank you for our conversation today.

[36:12] I really appreciate your time and all your listeners. Thank you all for what you do. Send my love and support. Sorry for your loss.

Again, my only message really, again, is that I always have hope because people like me are going to fight 24-7, literally.

And you're never alone. You can always reach out to me or our website.

And again, I'm trying to bring life to other stories now. And it's just incredible.

Someone once told me recently, and I put them up. I never thought of them.

I thought it would be nice, just one or two. It just kept growing, almost viral.

Somebody said they went on the other day and read it. They spent like 10 hours reading interviews.

And I couldn't believe it because I don't even spend 10 hours to read them because there's so many.

But again, there's so many more that are not, I don't know about.

And I hope to learn more about yours and others who are out there.

And the nice thing, too, is 365 days a year, my dream is a lot of times we do interviews and, you know, you put it, see you, goodbye.

[37:15] That's not my belief. My belief is we become family. So I'm going to reshare them.

So when I'm done sharing, I'm going to start over again.

So you're going to see if you do, you'll see yours up three years, maybe 10 years. And my dream is to have my children continue this on.

Or I'd rather have a cure and get rid of the whole thing.

But, you know, the goal. But again, I really send my love and grateful for our time today and also for our future sharing awareness. Oh, for sure.

And definitely, we are going to be posting this everywhere.

And we'll put George's information in the show notes later and listen to next week's episode or the next episode.

I do them twice a week right now. So anyway, thank you for being here.

And we'll talk to you again soon. Bye.

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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