From Personal Experience to Public Advocacy: Stories of Hope with Dr. George Ackerman

Have you ever felt the weight of the world on your shoulders while caring for a loved one suffering from a debilitating disease? Dr. George Ackerman knows that feeling all too well. He opens his heart and shares his personal journey of caregiving for his late mother, Sharon, who battled both Parkinson's and dementia. His poignant narrative about the challenges he faced in ensuring proper medication and making the difficult decision to keep her at home is bound to resonate with many listeners.

Dr. Ackerman's dedication to raising awareness about Parkinson's disease is evident in his tireless work with the Together for Sharon. He also emphasizes the importance of movement for those living with Parkinson's, a simple yet crucial aspect that greatly impacts their quality of life. His family's trials and tribulations with his mother's dual diagnosis, as well as the support they received from the American Parkinson's Disease Association, offer a realistic look at what life is like for caregivers and their loved ones.

In the final segment of our conversation, George finds the strength to share uplifting stories and offer messages of hope and resilience. Through his platform, Together for Sharon, and his advocacy work, he continues to inspire and support those who are navigating their own seasons of caregiving. Tune in to hear how Dr. George Ackerman's experiences serve as a beacon of light for others amidst the challenging world of caregiving.

Transcript

[00:00:00] Rayna Neises: Welcome to A Season of Caring Podcast where we share stories of hope. for family caregivers, breaking through the busyness and loneliness of caregiving to find God, even in the midst of the season. This is Rayna Neises is your host. And today I'm excited to introduce you to Dr. George Ackerman. He's from Brooklyn, New York, who's now residing in Florida. He works in the field of law, police, and education. George lost his mother Sharon Riff Ackerman on January 1st, 2020 due to Parkinson's disease. 

[00:00:31] George wanted to honor his mother and continue to help in the Parkinson's awareness cause and didn't know how to bring about change. With his family, he started Together for Sharon for the purpose of keeping his mother, Sharon Rift's, memory alive and to share the message of Parkinson's awareness and hope for a cure. 

[00:00:48] Today, Together4Sharon. 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. George, thanks so much for joining me today. 

[00:01:09] It's an honor to have you here. 

[00:01:11] Dr. George Ackerman: Thanks for your time and also for your viewers. It means the world to me and my family. So I really appreciate it. 

[00:01:17] Rayna Neises: Well, I love what you're doing to honor your mom. Tell us a little bit about her and what caregiving with her looks like for you. 

[00:01:24] Dr. George Ackerman: My mother unfortunately passed away. It's three years, but it feels like every day to reoccurring, but due to Parkinson's, she had it for about 15 years, but never really affected her inability. She was very independent, lived alone, was able to, you know, grocery shop and do normal things until the last year where I really, unfortunately, excelled, I don't know, due to, medicines and things, but I kind of fell into the world of caregiving without my choice or even much knowledge on it, I've never done anything like it, but I found myself, quickly trying to maneuver and try anything I could even imagine or not even dream of to try and help my mother. 

[00:02:05] We really try to so many things. I always said to myself that never want to regret anything and if we had to do it over I would and it's really the only thing we need now is a cure and that's why I do what we do today because I feel that awareness is a big problem that was when I was going through my struggles with my mother and our journey, and I don't want anyone to ever have to have that feeling that I did. 

[00:02:30] So that's why, again, we fight every day. Some days I don't sleep, but I just want more people to be aware of Parkinson's disease because I find And I feel in my heart if more individuals were aware that we would have a cure by now. 

[00:02:45] Rayna Neises: I think that's one of the hardest things for me as well, my mom was diagnosed when I was only 16 years old with Alzheimer's disease and she lived 12 years and then seven years after that, my dad was diagnosed and he lived 14 years and it amazed me that the medications my mom was on in the 80s were the same medications my dad was on, you know, 30 years later. 

[00:03:07] So it is such a difficult thing. And like you said, it seems like a lot of the research and the funding and things are starting to catch up. Do you feel like they're doing a better job with the research in Parkinson's? Or is it still pretty far behind? 

[00:03:22] Dr. George Ackerman: Michael J. Fox Foundation is making great progression because of their, hard work. They're actually introducing individuals like me to our local congressmen and women, and they're trying to get, and actually it's already going through the process, the first bill in our U. S. history of the political world. 

[00:03:40] It's called End parkinson's Disease, so it's an actual bill through Congress and If more individuals, even your listeners in their cities, they can reach out to their congressmen and women to really get involved. I was able to give in a three minute speech and practice it for weeks. No problem. 

[00:03:56] I'm a good speaker, but I fell apart during the speech because there's a one part where I talk about how my mother's favorite thing to do is on Sundays, the blow bubbles in the backyard with her grandkids. And unfortunately, you know, we can't do that anymore. So it was definitely me. are warming but heartbreaking and, I'm just hoping that they do pass this bill. 

[00:04:17] They do have for other diseases, but Parkinson's, unfortunately, never had that attention. We're lucky to have, unfortunately, Michael J. Fox, who has the progression, had early onset, but he's an incredible fighter and warrior for this terrible disease. Now individuals like ourselves and your viewers can reach out to their local representatives and also get involved. 

[00:04:38] So I find that they're doing some great things. There was a biomarker found that there might be a chance soon that you can actually test to see if you will have it. And that helps a lot because then you can actually, give the proper prescriptions and treat the proper illness. But I'm not, I'm a PhD, I'm not a medical doctor. So I don't really, I can only talk about our experiences. But my mother passed, I mean, there were garbage bags full of medicines and I can't imagine that didn't, add to the speediness of the stages of the Parkinson's because, you might be prescribed something, but every individual is different. 

[00:05:14] So who knows if it's the right amount, the right doses, and you have caretakers putting those into play at the right time. So one little thing is it's just very, very difficult. And she was lucky enough that we kept her in her own home. We didn't put her in a home. So that was also, you never know if that's good or bad. 

[00:05:32] I just wanted her to be cared for. And, but, you know, we don't know if in a home they might have, you know, given better appropriate medicines at the right time. So, these are just things that I kind of think back on, but again, I can't have any regrets. 

[00:05:48] Rayna Neises: Yeah, you just have to do the best that you can. And it sounds like you did a lot to help support your mom. And I know for my dad, there was a lot of comfort in being in his own home. So I think a lot of times that can be more comfortable for them. Definitely more challenging to get the care to them sometimes that they need. 

[00:06:04] But so I'm glad that you're really involved and I do encourage the listeners to get involved in the political side of it. I don't. Love that. But I think that lobbying piece can make such a difference. And so many times, our causes are getting to where they're really easy to send emails and to stay engaged in those bills. So thanks for reminding us of that, George. I think it's so important to be able to just remind those lawmakers, how important these things are. 

[00:06:30] Dr. George Ackerman: And it's a bipartisan thing. It's not political, really. The sad thing is, I'm not sure of the state, but I was told a week ago a local congresswoman had to actually step down because she found out she had Parkinson's. So now it's affecting, you know, more and more, unfortunately, individuals. I was shocked that I always thought that there were about a million people approximately with Parkinson's in the U. S., but four or five months ago, I learned about something called the World Parkinson's Congress, and that's a group who has all self funded volunteer. They bring all the Parkinson's community around the world together. And it was a beautiful event in Barcelona, Spain. I couldn't attend, but I was able to really network a lot. 

[00:07:12] I've been able to meet a lot of inspiring people. But now I'm aware there's still about 10 million people around the world. So, Parkinson's is really affecting more people than we could ever dream. And again, awareness is the problem. I wasn't aware of that. But I decided we head Together for Sharon. com and it's a website. We're not a company. It's just me. And I, you know, it was alive, it was out there, but it's kind of just, you know, occasionally I do things, but I said, why not use this platform to share other individual stories? But I decided, and I kind of went a little bit too much for one person, it's just me, but I've interviewed about 300 people now in just three months. 

[00:07:50] And again, it's been an honor and pleasure because I'm learning so much and it makes you also as a caregiver know that you weren't alone. And now today that's my new journey really is to just help others and every day I try to publish another interview or story and I plan on going back to number one and just doing it all over again. 

[00:08:10] So, hopefully forever I can keep doing this or until we find a cure. I'm currently writing my first book. I've written books but not on Parkinson's and gonna be on the journey between my mother and I. And it's going to be really in depth and bring us into the sad parts and the happier times. But I kept a journal during this whole, that whole last year. 

[00:08:31] I even documented it. I won't share pictures and videos because she wouldn't want to be remembered like that. But I did want to try to just share the good stories. My wife and I also started our podcast once a month. It's just a conversation on awareness where we get to speak to people in the Parkinson's community. 

[00:08:49] You know, so we're trying to just kind of stay out there. I'm in South Florida, like you mentioned, and I'm sad sometimes that we only might have a walk a year, and it's just not enough. Last year we had one, a tornado came, and while I was standing there, it ended the whole thing. We love those events because you get to be with the people and usually a little desk and we have a table where we hand out bands. 

[00:09:12] And I'm usually in the middle of all the pharmaceutical companies. So sometimes people are actually scared to come over because they think we're selling something but I had a great opportunity in one time. where somebody realized that we were just, there to support them. She started crying, so, you know, we all cried together, but it's my main goal even talking today that individuals know that there are people like us who really love them, support them, and I don't want anything really in return just to find a cure. 

[00:09:42] Rayna Neises: Yeah. So important. So what would you say surprised you most about stepping into that caregiving role? 

[00:09:49] Dr. George Ackerman: How much you're not prepared. I mean, I went to law school. I've been a police officer and I have a PhD. None of it prepared me at all for this. Again, it was really a full time job plus five more full time jobs on top of my regular job and I have three children and my wife. Luckily, I had a great there she's amazing support, but I didn't get to see my, you know, family. And then the worst is that my mother had also dementia, which causes delusions and hallucinations. So she would say the, an aide who just kind of more like, helped out just to watch over her. She told me once they harmed her and things. 

[00:10:25] So that, you know, Police officer, I believed her, and then I had to put video cameras in, so I noticed one time one did kind of neglect her, and she needed help at 4 a. m., and they didn't show up, so we went through basically like 10 companies, spent, it was 12, 000 a month for us to have somebody watching over her. 

[00:10:44] That's just to for the care and offer food and living expenses, so it's not easy for most people, and the financial part of Parkinson's is something we would need 10 more series of podcasts about, we just, you know, wouldn't have the time. But I think the most surprising thing is, even today, I don't have you know, I don't, I didn't, I learned what, you know, how to be, what to do, but it's still you know, you're still learning. 

[00:11:09] Rayna Neises: Yeah. there's so much responsibility and so many different areas to become acquainted with it is difficult. And then, like you said, just managing care, bringing helper in is is a whole job in itself, isn't it? So there are so many hats that we wear as caregivers, and I think that's 1 of the things that support groups can really help is to kind of make you not have to discover everything on your own, but can give you, you know, people that have been there or are in the middle of it can give you support in that way. 

[00:11:39] But it definitely can be overwhelming. So share with us, George a story of when you felt like God really showed up for your family. 

[00:11:48] Dr. George Ackerman: It's hard to zero. You know, for some odd reason, we remember more of the dark times than the positive. The last year, I was questioning that, but I think unfortunately, in the end, she was at peace. She had a tough seven final days , she really didn't really live well the last seven days. That was the hardest time, I'd say, in my entire life. My mother was my best friend, we had a, I call it an odd relationship, but other people would just say. It's great. But we spoke like 100 times a day. I remember when I met my wife, even on our first date, I called my mother excited and told her, you know, about her and they fell in love, too. 

[00:12:26] I got a lot of individuals, my mom, like their parent in laws, but I always loved each other. And I would always, you know, my mother was the first person, whether it was passing the bar, passing the police academy or having our baby. That I called. So having that gone, you know, is tough. And even today, like we went to Lionel Richie concert. And you know, after we left, I thought about calling her on the drive home. But, she's not there. So what I would say the big impact I did have, where I would think individuals are watching over is really Together for Sharon and an odd way of being able to reach out to the community, you. to still share my mother's memory and to continue to learn. I think we, the best thing in life is that we're continual learners. I might have a lot of school, a lot of degrees, but I learned so much from every individual I meet. 

[00:13:18] Rayna Neises: Yeah, definitely. And in the dark times, it can be hard to see God in the middle of it, but I think it's important to remember he doesn't ever leave us even, even in those hard times. What would be one thing that you would like the listeners to know specifically about Parkinson's disease or just maybe symptoms or things that might give them a clue if there's something going on that they aren't aware of. 

[00:13:40] Dr. George Ackerman: Yeah, one thing I've learned unfortunately, at the point we were reaching out, my mother was kind of, it was too tough for her, but moving is the key word really this synopsis and the whole entire movement when you have walks and things, but with Parkinson's disease, if individuals box or if they, you know, walk or do exercise, it seems to slow down the progression. 

[00:14:03] It's a neurological disease that affects the brain. Again, everybody's so different, so some individuals can respond much better to that. We were lucky because we reached out to many organizations, but one did show up. That's the American Parkinson's Disease Association. We raise about 10, 000 of my own family's funds every year. 

[00:14:23] We donate and we walk. We also support other organizations like the Parkinson's Foundation and the Michael J. Fox Foundation. But a American Parkinson's Disease Association actually showed up our house. Unfortunately it was again too tough for her, but they did offer different resources and that really helps big time when you feel alone. 

[00:14:42] So I think that that's important, but being in the community to me is very important. Meeting other individuals going through the same thing, whether caretakers or someone diagnosed is really critical and pivotal in this entire fight. 

[00:14:56] To conclude on that note is really. Moving. So moving is very, very important. Have to keep moving. If you ever, ACE recommend like 40 minutes of exercise a day. A lot of times people do that, but some don't. But my mother, she liked to walk, but she wasn't into the most physical fitness. So I became a personal trainer. that I end up having recently back surgery myself. So I always joke into myself and say, my wife, and say I might be healthy if I never did any exercise. But very Parkinson's and again to the point it's moving. You have to keep moving. 

[00:15:33] Rayna Neises: It's so, it's funny because it seems like it's the opposite that would be the helpful thing, but definitely I know in my area in Wichita, there's a group that does, it has exercise classes specifically for people with Parkinson's and I think it's becoming more well known that the movement is making a difference. And so that's, that's important to know. 

[00:15:53] Dr. George Ackerman: Yeah, you mentioned some signs. A lot of individuals, if you look at the new movie by Michael J. Fox, which I recommend, it helps a lot with awareness. I don't know if you've seen it, but I did a little review on my website, but The big usually the tremors or some signs. My mother didn't have external. She said she had internal. 

[00:16:12] So the tough thing is again, I'm looking to write about this more in the future and law enforcement. I'm a police officer reserve now. And even an officer, I've heard stories where they'll pull someone over and someone's shaking and moving and they don't realize it's just, Parkinson's, so we need to get, again, more awareness in every venue, in every field. 

[00:16:32] But she had more of a left arm and very stiff, so she was able to, again, live a regular normal life. There were times where she couldn't, when we went out to dinner, she couldn't even cut her food. That was like a sign one of them. But then when it started getting worse, she would start having more issues. Her toes would curl up. She complained of fibromyalgia, which is located in the back pain. Dystonia, different symptoms of so again, the curling of the toes. She also made, like, different movements were not what a regular individual would have. They're all just signs that something wasn't right. 

[00:17:08] They looked into it, and they did specific tests. Again, I'm not a medical doctor, but they were able to determine where some people actually misdiagnosed, which is a problem, too. But those were some of the signs that the worst is really... The Delusions and Hallucinations. Some are caused by the medicine, but number one time I wrote in my book is my mother and me and my daughter. She was about six at the time. We were just sitting on her bed on a Sunday, just talking. My mother went over to hug her sheets, her pillow sheets, and was hugging and saying, I love you, Brooke. That was my daughter's name, but Brooke wasn't, you know, sitting there. So those are the kind of things that really are depressing, but frustrating. And again, I feel if we have more awareness, we would have a cure for many of these areas. 

[00:17:54] Rayna Neises: Yeah. So to wrap up, can you share one thing you feel like helps you to live content, love well, and care without regrets? 

[00:18:03] Dr. George Ackerman: Yeah, just writing helps me a lot. Again, I kept a journal during this, the last year, writing a book now it's going to be a journey and we're changing the title. And then after that, I'd like to follow up with all my interviews. We're going to put all the interviews I've done around the world in a book. 

[00:18:18] I've even thought of a children's book because it was hard because I couldn't explain to my children. So I have a lot of things in the future really excited about. But these things like a podcast with you really touch my heart and make me feel great today and tomorrow. And I get really excited, it's I do live chats for work, like for the professor and I do get excited with that, but this is much more exciting because I feel like we're all on this planet for a purpose. 

[00:18:46] Unfortunately, I've taken a horrible situation, but I feel that we've turned it into a positive, so I just want everyone listening, and I want to thank you and your listeners, but really, just, I always leave everyone with one thing, that there are people like me who want to send love and support, and I'm always just an email or a call away. 

[00:19:05] I'm never going to stop fighting until we have a cure, and again, I just really want to thank you and your listeners for this time. It just, I can't say enough, but it really means the world to me. So thank you. 

[00:19:17] Rayna Neises: Well, thank you so much for coming and sharing about your mom, George. Again, you can reach George at www.togetherforsharon.Com and see more of those stories as he's publishing them regularly, as well as keep your eye out for his book. Thanks again for being here today. 

[00:19:34] Dr. George Ackerman: Thank you. 

[00:19:34] Rayna Neises: Listeners, thank you for joining us for Stories of Hope from George. This episode has been brought to you by Content Electronic Magazine, available today, to help you find God in your caregiving season. Take a moment to find him, and then jump back into your caregiving refreshed and ready to go. It's available now at www.contentmagazine.Online. If you would like to sponsor an episode of a Season of Caring Podcast, feel free to reach out. I'd love to hear from you. 

[00:20:03] A Season of Caring podcast has been created to share stories of hope for living content, loving well, and caring without regrets. If you have legal, financial, or medical questions, be sure to consult your local professionals and take heart in your season of caring.