Episode 249: A Journey of Love, Grief, and Advocacy for Parkinson's Caregivers with Dr George Ackerman

Listen on Apple Podcasts Listen on Spotify

Episode Transcript

Charlotte Bayala: Thank you, George, for being here

Dr. George Ackerman: with us. Thank you for your time, and also all your viewers, listeners, it means the world to me and my family to have this opportunity to not just get to know you, but in my opinion, become family, because this is important. It's not just about a podcast or a little talk.

I hope it continues for as long as we both can.

Charlotte Bayala: Thank you, I appreciate that. I'm very interested in learning more about you. Learning more about your story and sharing it with other people. So why don't we start with, how you became a

Dr. George Ackerman: caregiver? My name's, uh, again, Dr. George Ackerman, but I'm here more as Sharon's son, George.

My mother was my best friend. Unfortunately, she passed on 1- 1- 2020 due to Parkinson's disease. She also had late onset dementia. She was my hero. She was an inspiration and really she's the reason I am the man I am today because of a lot of her sacrifices. She had Parkinson's for 15 years.

Unfortunately, she didn't really talk much about it. It didn't affect her whole life except she had some stiffness in her left arm towards the middle of that time. But I, I look back today and as we'll talk, I wonder if she was either not aware enough or ashamed or maybe the medical science didn't help.

But we kind of just. lived with it with no big deal till the fourth year before she passed when she went for a special test, you know, like a study at a university. And again, don't blame the university or any doctors. It's really the disease's fault. But she came back from that, visit, unfortunately excited that maybe something would help if we tried everything.

And they might have drastically changed her medications too fast or quickly. And she ended up, uh, got a call at 4 a. m. that she was moving her furniture out of her house because she was in fear that someone was going to harm her in her home. So I got there. I was in shock. That was really the start of my journey.

Woke me up quickly, to learn about Parkinson's because I, I myself wasn't aware. So I often get mad at myself because, you know, you don't, it doesn't affect you personally. Sometimes we don't think about things and that's a sad part of this disease.

I think the more awareness we get, the more likely we'll end this disease forever. So,

Charlotte Bayala: she had Parkinson's, but it wasn't really evident until that four year mark before she was gone. Looking back is always easy to do, right? And, and seeing the things that you couldn't see, but I feel like that happens for a lot of us.

I think being out here and talking about your mother and your experience could help someone who may be catching this and thinking, Oh, wait, here, here are some things that maybe I'm seeing in my loved one. Do you have some of the things or that were leading up to that moment before she was diagnosed?

Dr. George Ackerman: Yeah, I mean, unfortunately, there's a lot, the odd problem, really, with Parkinson's is everybody's so unique and different. So what happens to my mother doesn't mean, you know, it'll happen to someone else. What happens to someone else might not be exactly what happened to my mother. One example is she didn't really have the external tremors like individuals may, Michael J. Fox, unfortunately, is an example. Or if you see him physically, you might have issues. It's uncontrollable movement. Also, some curling of the toes, dystonia. Also, you always want to make sure they're not going to fall. Because if you fall, even at an old, she wasn't even old, in my opinion, in 2024.

You know, what's old, maybe 90 these days or 85. She was only 69 when she passed, which to me, you know, she had at least 10 years of her life robbed from her. It's also, uh, you can see she didn't have a lower, lower volume of her voice. So that could occur. It's just again, unfortunately, the list goes on. And another problem with that is sometimes people are misdiagnosed because they may have signs of Parkinson's, but it's actually some other illness.

So that's been a big issue. Misdiagnosis is the problem or not seeking the diagnosis early enough. Today, though, there's individuals with early onset Parkinson's. And again, I hate to keep bringing up Mr. Michael J. Fox, but he, I believe, had it at age 30. So people, it's not just something you get at later stages in life, you can get it early on now.

I'm not a medical doctor, so I just really talk about my experiences and what I went through with my mother and there's also many medications, but.

A lot of those two also can cause other side effects, but the big things that come with Parkinson's, you might not even see things like depression, difficulty swallowing, emotion, urinary constipation. No one likes to speak about it, but my mother had major issues that kept her up many nights due to constipation and also sleep problems.

She unfortunately also got late onset dementia, which not everyone gets which to me is very frightening because it brought about hallucinations and delusions, like the one that I mentioned to you, where she thought people were going to harm her. So it's very frightening as a caregiver. And obviously for that patient who is diagnosed with Parkinson's.

Charlotte Bayala: But I think it's good to right. Neither one of us are doctors, right?

But I feel like it's good for people to hear that there isn't, you know, everyone thinks of Michael J. Fox with Parkinson's and they feel like that is the picture.

Of what they're supposed to see if someone had the disease, but that's not necessarily the case. I think it's good for them to hear from other people that their loved ones who did have Parkinson's or do have Parkinson's have different symptoms of the disease because. It comes as a, as a surprise, first of all, when someone is diagnosed, but to not just say, Oh, well, they don't have tremors.

They don't have uncontrollable movements of their body. So this isn't something that I should be concerned with. If there's a concern. For the health of your loved one or yourself, right? Because as you said, this is a disease that isn't for older people it can present itself in younger generations and To just be aware that if there is something that doesn't feel right to go talk to a medical professional so that you can at least rule out something big Sure, if it's nothing it's nothing right, but if it's something it's good to know early on , because just like you said, it feels like what happened to your mom the outcome could have been better if she would have had a diagnosis early or for her to be treated, for the disease.

Dr. George Ackerman: Yeah. We're not really sure. I mean, the problem is we went to several doctors and again, like you said, it might have been kind of too late towards the end, they try because it's something that I wouldn't wish anybody to have to go through,

Charlotte Bayala: How old were you when you realized that you had to jump in and care for your mom in a different way?

Dr. George Ackerman: It was about four years ago. So I would say, I would say make it eight because that's when we were going through. The worst time now I'm 46. So I'm not a math person, but do you mind it?

Charlotte Bayala: Me neither. That's why I'm here.

Dr. George Ackerman: Leave it there. But 48 minus six is how old.

Charlotte Bayala: So you were, still a young person, relatively speaking and, becoming a caregiver for your mother. I know from the conversations that we've had off the podcast and on here, you definitely have a lot of love for your mother.

And I, I get that you wouldn't have thought twice to take care of her, but there are, we all know if our caregivers listening to this, that there are changes that have to happen for you to be able to care for a person, especially if they need a lot of care. I'm just wondering, once you realized and figured out that that was what your life change was going to be, how

did

Dr. George Ackerman: that feel for you?

I never even planned it, didn't think about it. I kept thinking, this is not going to take her life, I never dreamed that this would have, again, taken her from me and I felt a piece of me died with her.

And that's why, you know, there's a lot of types of people, and I respect everyone, but they decide that some people will just, you know, move forward, remember their loved one, of course, because it means a lot, but kind of go back to life and think about them, but I'm the opposite. I just don't feel that I can rest in peace literally every day.

And there are some nights I don't sleep many nights just thinking about. All the incredible people I've now become family with who have Parkinson's or other caretakers if we could just reach even today one person, then I feel like we changed the world and, oddly enough, when we met, uh, 2023, a lot of amazing things have happened.

Just in a few months, a bill just went through. The House of Representatives, the first bill in the United States history, called the National Plan to End Parkinson's Disease, and on Christmas it passed, I mean, that's like, when we're talking about history made, now this year, 2024, we're trying to get it to the Senate, pass it into law, and Michael J.

Fox Foundation spearheaded it, and I had the opportunity to work with them and speak to my representatives to help them. And I've actually interviewed a few of the sponsors of the bill, which has really been an honor. That's on the website. But when we started it, really, we just want to remember my mother and my journey. We thought like five people would see it and it hit me that this is no longer just about my mother and me. It's about everybody. I decided to interview over 500 Individuals, either they had Parkinson's or don't, they were caregivers or they were in foundations like Bryan Grant Foundation, who was a former NBA basketball player, or the American Parkinson's Disease Association, or just people, it was just an incredible experience.

I didn't think anyone would respond, but it just took off. And I was able really to sit here and tell you that I've interviewed people from France, England, Spain, Italy, Australia. Iceland, uh, I mean, you name it, India and Africa. And what I learned is that there's just not awareness anywhere. These are the misconceptions that need to be thrown out of the world.

So that's what I try to give back. It's just, you know, I want people to know that they're never alone and that someone like me is out there and we're going to keep fighting till we rid our planet, not just the U. S., but the planet of this disease.

Charlotte Bayala: Yeah, well, and you're creating this wonderful community as you meet all these people.

Did you have a community to tap into before this? Did you have other people you knew that were Parkinson's caregivers?

Dr. George Ackerman: I'm glad you said that. And that's why I started to go for sharing their country that felt alone. Like I found a bunch of things, but nobody really to, talk to. I mean, again, I won't name them, but some big organizations didn't.

I'm in South Florida, which is a big elderly population. A lot of people are nobody was really around. I did get one organization, the American Parkinson's Disease Association. So see, they showed up my house. Unfortunately, their programs were great. They're more like exercise, but it was too late, but I really I never forgot that they did that so it's kind of nice to have some great organizations like them and the Parkinson's Foundation, Drive Toward a Cure. Power for Parkinson's and, uh, Michael J. Fox Foundation and also Team Fox so they get any of the support we can give to them.

Charlotte Bayala: Yeah. So as you decided to do the Together for Sharon website to honor your mother and it, in your mind, was going to be this small thing that maybe a couple of people would see and now it has grown.

Can you. Explain the process that it took you through. Did it help you, process losing your mom in a way by you giving to the community

That had

Dr. George Ackerman: Parkinson's? Yeah, I mean, , even today, I'm still unfortunately grieving even today, four years later, I'm still grieving. And even speaking to you help speaking, letting you having your listener support helps

I mean, during the holiday, we have a seat empty and, you know, she's not with us. So these things still , drive me to keep pushing. Like you mentioned, I thought we'd have 10 people look at the site. I, somehow I realized if you go to the very bottom of our front page, home page, it actually says there's over 30, 000 people who have visited the site.

And that was like something again that, you know, it's heartfelt, but touches my heart. I know again, there's a lot more to do, but I just plan to, I didn't plan any of this. It just kind of, now these days is a life mission and I won't stop till we find a cure for Parkinson's.

Charlotte Bayala: and you have a. Great variety of people that you've interviewed how do you find the people or do they come to you to help you spread the awareness?

Dr. George Ackerman: I love this field. I wish it didn't exist, obviously, because I don't want people to suffer, but just everybody's so friendly.

I reach out a lot, but then when I'm on social media, I'm on all of them. As I'm on there, I see other people's stories. I see other people. And I always say the only journey that breaks my heart is the one that I don't know about.

We have 500 now if you go to Together for Sharon.com click interviews, the thing that inspires me every morning and keeps me going is every single morning I wake up, a new story is told.

These are things that are timeless. They'll be out there forever. And those people know that they're story will never be forgotten and their memory will always be remembered.

So I'm gonna keep fighting

Charlotte Bayala: well, and, and you mentioned, Michael J. Fox's organization a couple of times and you just recently had a closer connection with them.

Do you want to share?

Dr. George Ackerman: Oh, yeah. I mean, it's been amazing. They're one of the leaders in the field and their goal again is to end Parkinson's so they don't have to do this like me. There have a foundation, and they're leading the way in research

They also work hard on, awareness.

I've been able to speak with their public policy team many times in this. I share podcasts with them really feel that it's important because then Parkinson's bill that's going to the Senate, hopefully this year, then the president will sign into law, dramatically increases federal funding, which we never had for Parkinson's in the U.S. developed pathways and treatments, improved diagnosis early on early. Sparks new innovative models, creative measures to prevent it and also for awareness.

I don't want people to have to struggle like Mr.Fox, my mother, or again, I'm optimistic, but I can get it. Anyone can get it.

Charlotte Bayala: Well, if you were to have someone come up to you who is a Parkinson's caregiver, what would, one of the most important pieces of advice you feel you could give them right now?

Dr. George Ackerman: Oh, again, unfortunately, everyone's so different, but it depends, you know, how long they've had it. I find that now, we didn't know years ago, I felt, you know, burnt out, stressed, depressed, uh, sitting next to your loved one, anyone telling them you don't know what tomorrow is going to bring, calling a doctor one day in a room, to say, look, doc, you know, is my mother going to live?

It's something that I don't want anyone to ever have. It's just more, I don't know if it's scary to not know or to know.

So if I tell a caretaker, you're not alone, keep fighting. And you know, this is, you don't know how much longer you could have 20 years. Do you want to make every moment somehow positive? My wife was incredible. caretaker because she my mother was some point towards the last year was just way too sick to even leave the house.

She went from independent strong woman driving to having to take away her car because there was danger. Then she went to the cane, then to the walker, then to the wheelchair, . Very quickly, like a year. And, , my mother, just liked to be, you know, look good like anyone, and happy.

So even for small moments, my wife would bring in like a hairstylist or, you know, pat pedicure. I don't know, my god, I don't know a manicure , but it a little things to try and make a smile for a minute. So for caretakers, just try and keep positive for your loved one, for those diagnosed. Again, keep moving and know that there's people like me that are not going to rest, so that we have a cure.

Charlotte Bayala: If there are people that are listening and really interested in helping your advocacy work, what, what do you suggest? I know you talked about talking to your, representative, when that bill was in the house. What can they do to do more?

Dr. George Ackerman: Just reach out to your senator. It's a lot easier, because your House of Representatives is sometimes very confusing because there's so many, but now it's really simple.

It's just your Senate, U. S. Senate, usually there's one or two, we have two in Florida, so I already have them on board. I'm trying to get interviews with them. But best thing to recommend is to get go to Together for Sharon com. 

Charlotte Bayala: Is there any last thing that you want to share to the Parkinson's community, the caregivers that are there, working to help their loved ones live?

Dr. George Ackerman: I just want to thank you and the viewers. You have a special place, again, in my heart. I feel like we're all family in this fight because, you know, no one loses anything. We only gain from advocacy. And, you know, if I tell one person. Where they share this podcast and this talk in the future. Maybe it'll again, change somebody's life. I recommend to go to Together for Sharon. I don't want you spending 10 hours there. Somebody wrote me a few weeks ago. I really enjoyed it. He was on the interviews for 10 hours, which was great, but the nice thing is he had Parkinson's and he realized he wasn't alone.

That's really nice. Oh, I mean, we have a lot planned. I'm in law enforcement and it concerns me as a academy instructor in the past, but there's no awareness for Parkinson's and policing or a lot of the first responder world.

So if someone pulls someone over late at night and an individual might be shaking because of Parkinson's, that's going to be very bad if that officer is not trained. I'd like to bring a bill throughout the united states and change our law enforcement world forever for parkinson's awareness But on the last note is I always say this on my podcast and everyone I go this is for all viewers or listeners.

We love you. We support you. We care a lot about you and you're never ever alone I will advocate and so We'll advocate for you and together our voices are so much stronger And I always say I'm just getting started, even though, you know, I really haven't, but I feel like every day you're kind of renewing yourself and when I want to give up and quit, I think of those people who can't, because I always say Parkinson's disease doesn't take a break.

So why should I? But again, I just, you know, really want to thank you and hope this conversation continues beyond today. Yeah.

Charlotte Bayala: Thank you so much, George, for being here. Really appreciate it.

Dr. George Ackerman: I appreciate it and thanks again for everyone and please, keep in touch. Again, togethershine. com, it's created a memory of my mother, but it's really just me, one person, one son, and one voice can really make a big difference. But without all of you, you know, I wouldn't be able to do this. So, again.

Charlotte Bayala: Thank you.

Links:

Together for Sharon  https://www.togetherforsharon.com/

Bryan Grant Foundation  https://briangrant.org/

Michael J Fox Foundation  https://www.michaeljfox.org/

National Plan to End Parkinson’s Act  https://www.congress.gov/bill/118th-congress/senate-bill/1064#

American Parkinson’s Association  https://www.apdaparkinson.org/