Episode 74 - Living with Parkinson’s: A Tribute to Sharon Riff Ackerman and the Quest for a Cure
Welcome to Caregiver Relief. I'm Diane Carbo, RN your host. Today we are addressing Living with Parkinson's, a tribute to Sharon Riff Ackerman and the quest for a cure. I'm honored to have Dr. George Ackerman, a family caregiver, a dedicated advocate, Educator and an author. Dr. Ackerman has joined us to share his inspiring journey, and I love that Dr. Ackerman, as a mom of two sons, I love it that he's known as Sharon's son. I enjoyed that. He faced a heartbreaking loss on January 1st of 2020 when his mother, Sharon Riff Ackerman, passed away due to Parkinson's disease. In her memory, Dr. Ackerman and his family started Together for Sharon, an initiative dedicated to raising awareness about Parkinson's and advancing the hope for a cure.
Through Together for Sharon, which now reaches thousands across the United States, Dr. Ackerman connects with individuals in the Parkinson's community, warriors, caregivers, and advocates to share their powerful stories and amplify their cause. In today's episode titled, A Son's Mission, Dr. George Ackerman's journey from loss to legacy, we dive into Dr. Ackerman's personal journey and his relentless pursuit of a world free from Parkinson's. So join us as we explore his latest book, his interviews about the brave voices of the Parkinson's community and his unwavering commitment to his mother's legacy. And don't forget to visit Together for Sharing to learn more about his mission and to stand alongside the Ackerman family in the fight for a cure.
Welcome, Dr. Ackerman. I'm really excited to be able to have this conversation with you and to share this information with my listeners. I'm honored to meet you and thanks for your time and we send our love and support to you and all the listeners during this holiday season.
Not always easy for me and our family because of the seed missing at the table due to Parkinson's disease. Thank you. Yeah, that's a tough one. I've lost several family members, none to Parkinson's, but it's the holidays are always a tough time for me. Dr. Ackerman, first, I would like to ask if you could start to share a little bit about your mother, Sharon, what she was like, and how did Parkinson's affect her life and the lives of those around her?
Yeah, she was my best friend, still is today, always will be. And the only reason we do this voluntarily is because I don't want people to ever feel alone like I did as a caregiver or she did as someone diagnosed with Parkinson's. Also, I don't want anyone to have to go through the battle like she did and unfortunately we lost, but still many people out there fighting a million or more in the U. S. And 10 million around the world. So this is really brought some positive, even though it's from sadness. So I've been able to meet incredible people like you and your audience and so many today that I feel they're like family in this fight for a cure.
My mother was someone who sacrificed her literal career and almost her real life throughout her time here. She was a school teacher, had a master's degree and gave it all up, sacrificed everything to raise me and my brother. So I knew the day that it was time, which I never dreamed it would be, to help take care of her was a challenge, but I don't think I'd be the man I am today or have my success if it wasn't for her sacrifices.
So doing the show, meeting you and the listeners, we, in a way, we help her memory to live on forever. That's a beautiful testament to your mom, and I know she's looking down on you and very proud of the work that you're doing. If you met her, it's funny, people say that because she would laugh and say, George, don't waste your time with all this spending with your family should be how, but, like I said, I wish we could find a cure tomorrow.
And I could just call in to talk about something else and oh, I know, that's the typical mom response. Don't worry about me. Just get on with your life. Yes. Can you tell us about the day or the moment that shaped your resolve to even start Together for Sharon? Yeah, a lot of it. Even today, we didn't plan on.
We never dreamed it with, my mother was only 69. So my world is really young, even 2024. I feel we should be living to 85 90. And there are many people who have Parkinson's that are still alive at 80 90 because everybody's journey so different. She had it for about 15 years, but didn't really tell us anything for seven.
And it was almost like I heard a word that's called Parkinson's, I didn't even know it was a disease. We all, didn't ignore it, but we didn't think much, but she was still able to live independently. She was a single woman, lived independently, had a really nice life, friends, family, shopping, she could do it all, driving.
All of a sudden, the eighth year. That I first became big time aware and took over in a way her life was she went for they tried everything. She wasn't doing well. The only noticeable thing is her left arm started becoming stiff, so she couldn't cut food. And again, it was something that was terrible, but not life, we thought life threatening.
So it was still not the worst. I was always like, all right, now I know it's a disease, but what is it? And every doctor we saw, like 15 said, you don't die of Parkinson's, you die with it. So she had no other medical issues. So there you go. We were still just dozing around and living life.
Not wondering if my mother would ever not be here. It was like still shocked today, five years later. So finally she went for a special trial because she didn't feel well. Yeah. And I won't say the school or the person because it's not the doctor's fault. It's the disease, but she came home that night and that's when my world ended, really, of my life and started a new page, which was my mother's caregiver.
She came home and then I got a call from my father in New York because they were somewhat, friendly, but he didn't live here. I'm in Florida. Said, George, at four a. m. you got it. And I'm like, I'm, my background is I'm a lawyer and a police officer. I'm like, PhD is criminal justice. Trained for police response, but not you know your family.
I got to her house at four a. m. and she had been moving her furniture out. And she said she thought there were Nazis inside her home and in fear. So I didn't know what the heck was going on because I knew that wasn't obviously happening. I rushed her to the hospital and they said she, we saved her life that night, but in an odd way, I feel like that was really the time where her life started to go downhill and I don't know what happened or maybe the medications would change too drastically, but her life and our spiraled downhill the last four years like nothing I've ever seen or anyone should in their life and we're actually making a documentary now about it because we didn't want to the last year of her life.
I documented her video and pictures, but I never shared it because I didn't want her to be remembered for that. So what I did is and if we get to the book, I didn't really want to write a book. I never even dreamed about it, but the last year I did keep a journal for myself about literally how and what and the good, the bad and the ugly of caregiving and from my perspective and from my mother as someone with Parkinson's and it's even time dated and stamped in one chapter, the cause, the issues, the lack of support, everything like inside that some people might never want to see because it's the truth and a lot of people don't really want to know.
I think it's a great thing because now you can be aware. And have a lot more into saying I also give a lot of tips to caregivers, but that was when the night the world of caregiving started for me. You're the typical person who's a family caregiver. It starts out intermittent and unpredictable and then all of a sudden.
One thing happens that changes your lives and you're you get into being a full time caregiver and it's, and people are struggling. I just want you to know that I'm excited that you're doing a documentary because so many caregivers feel alone. They feel just invisible to the healthcare professionals and even other family members.
So the only thing I'm worried and I'm honest, just the might only be, 10, 15 minutes, but I'm worried about the part sharing the tougher times because I did still never do that. So part of me is an inner struggle do I put that out there? But I think we have to, because we'll get attention.
But then again, I don't again want her to be remembered for that. But it was Parkinson's in a fast forward version. We don't have hours, but it's the one of the fastest growing neurodegenerative diseases in the world. Mr. Michael J. Fox is one of the advocates who has it. And unfortunately, just recently, I think he's now in a wheelchair, which is heartbreaking.
It's a motor issue, neurodegenerative, which means your body and your mind or your mind is like saying, I'm going to walk or touch the screen right now, but your body doesn't allow it. Parkinson's brings so many things that are different for each person, but the majority have external or internal tremors.
And they always say, if you don't see, someone could be standing like me, looking at you and talking, and inside you don't realize what they're going through. Also, rigidity is one of the major problems, facial masking. The biggest thing is this five, they believe in research five stages. First three is a lot of body issues, so you can still live independently.
The problem is when you get to stage four and five, that's where it's almost impossible to live independently because it's hard to bathe, to walk, to even eat or do many things. You also can't drive, which was a day I write up my book, one of the hardest days of my life, because anyone especially my mother, a female strong woman.
When you take away the ability to drive, you've just now taken away their independence, and it was heartbreaking. Stage four is where you need help dressing, bathing, sleeping, almost walking and also really just walking around. Movement's a problem. But the final stage, which was really the last year, And we have no clue the progression, why it goes quickly for some and slower for others.
But the symptoms are so debilitating that they have, and this is where I've never even heard of before, delusions and hallucinations were actually sometimes more frightening than Parkinson's itself. Other things were loss of smell, poor reasoning, weight loss, sleep disturbance, and vision problems. And that's only, again, the kind of fast forward version.
I'm going to encourage you because I've been a caregiver. Both professionally and personally I've been a nurse for over 52 years and family caregivers, here's a statistic that family caregivers are not aware of, 63 percent of family caregivers become seriously ill or die before the person they're caring for does because of the chronic stress, the lack of support or the, or even the perceived lack of support, lack of respite care available to them.
So I'm hoping that you'll find it in your heart to share those difficult And challenging times with listeners, because in your documentary and I hope you'll share that documentary with us when it's finished, because I think that people need to see the struggles and understand them and realize that they're not alone.
I have to ask you, what inspired you to channel your grief into an advocacy initiative rather than another outlet? Yeah, this is a big topic for a different show, but a lot of times people just not move on, but they have to move back to their life and they still always have a place in their heart.
I was in shock and I felt that my mother lost 15 years alive due to Parkinson's and likely 15 years after she passed. And my wife and I, we weren't prepared for a funeral and I even saying it is shocking. So all of a sudden my mother passed after a struggle of a year and I was like lost.
Like again, she was my best friend. We spoke 10 times a day, every day, seven days a week. So we decided to make these little things or just bands. And it says Parkinson's awareness in memory of my mother Sharon has the website and we gave, we thought we'd get 50 of them and that'll be it. And I was surprised.
How many people did come to her funeral to support us? So we left the funeral and I thought, that would be it. And I told my wife, maybe we should make a little website just quick, and just have a few pictures and that would be it. My brother in law now back then, he was just, dating my sister in law.
He took a picture for some reason with the band and if you can't see visually, but it was just his hand in the band, not his face. And because, and I'm a cop and lawyer, I'm like, that's interesting. People like their privacy, but so I thought, why not? All right. Why don't I put this band on and anywhere I go the next few years show my hand and the band and anywhere I am, like Disney World, the gym, the supermarket, just so people know that she's still with me and she's not forgotten.
I don't know what happened, but it went viral and people famous people were wearing it like really guys from I think NBC his wife Christina had it on and was saying to keep fighting and all these people around. It was just amazing, even up to Michael J Fox himself. It was wearing it and we have a photo with me and him together.
He's wearing the band. So I stopped doing the band just because it cost a tremendous like we were sending them. We don't accept money. Even today, I don't allow money. I'm not in this for that, which is odd even money. We sell the book We donated fully to the Michael J Fox Foundation. I do have receipts if anyone I don't do this for that.
I just don't want my mother to be forgotten or the other reasons I said earlier, but it went viral and it was just beautiful. It just shows that the world if they can hear about it will respond positively. This is not politics. No, everyone just wants a cure. No, you can't. I can't imagine even an argument, about this because it's just we want everyone not to suffer.
So eventually I stopped. I do pass them out at live events, but I couldn't afford to do. And I really didn't want to ask for money just yesterday. We decided to put the band for sale on the website, but I'm not promoting it or anything. If somebody wanted, they can find it. But, that was just amazing.
And I have like thousands of photos of people with bands and hands. It's just a beautiful, it's on the website. And then all of a sudden from what I thought, the website together, pusharound.com, though, we'd have five people and I would have been fine with that, but we've had over 40, 000 people visit the site.
It's become something bigger than me. And we have our own several shows now it's become like a media thing. And it's just becoming bigger than me. And the problem is as an advocate it's extremely expensive and time can basically do it full time and I'm hoping I can keep it up.
But, we didn't want to be a foundation on purpose because I love helping other foundations, but someday it might have to change. Otherwise I won't be able to fund that we've spent over a hundred thousand dollars. So far, I understand that. Totally. I absolutely do. Especially if I experienced the same thing with my website.
I have to ask Parkinson's awareness is at the heart of your mission. What do you believe are the biggest misconceptions people have about this disease? It's an amazing question. And the answer is that everyone used to think it's the elderly man disease, but that's completely wrong. Today we have something called young onset Parkinson's.
So there's more younger people from 20 to 30 to 40 and also females. I've been highlighting on my show by 20 beautiful, incredible human, strong beings, female. And bringing highlights as topics and issues that obviously I'm a man wouldn't even think of from being pregnant with Parkinson's to menstruation and things that I think there are women, might go with the show.
And we've had some incredible guests. We have Bernie Kosar, the famous NFL legend who has Parkinson's. We've had Senator Rick Scott, United States Senator, to talk about laws that just passed to help people with Parkinson's, but it's very important because there's someone sitting there right now as we are talking to you.
Might just have been diagnosed and their world is like stop, but if they knew that there was people out there were support and that they can also reach out to us anytime, I do feel that they would smile a little bit more and realize they're not alone in this fight now through together for sharing you've connected with so many in the Parkinson's community, as you've said, is there a particular story or an interaction that stands out in your memory that you might want to share with us?
Yeah, actually my second book and third because it's a two part it's called Voices of Resilience and they're all available on together for sharing. com. It's pretty I mean we just started learning how to you know I'm new at this to sell it on the website because you know I don't want to say what big company out there but they would take everything so we like to donate it but they would we would get you know nothing so we can't donate it but my second two books have actually their journeys and stories of other people around the world. I've interviewed a thousand people from England, France, Spain, Italy, Africa, Nova Scotia, places you wouldn't, Canada, US, some places you wouldn't even imagine or even think about that would Parkinson's would be at.
It doesn't discriminate, it can affect any race, gender, person, diverse, cult, doesn't matter. I realized two years, I thought, again, there were about a million people in the U. S. several years ago that have Parkinson's. But my heart sank again when I learned there were 10 million people around the world with it.
And they need a voice too. And there are some underserved communities in the world that don't even have doctors for Parkinson's like Africa. I decided it's not just about me and my mother at that point anymore. We have to all be a family. So I published a book or two about other people's journeys now.
All thousand are completely free at Together for Sharing. If you click interviews, you can get it free. But I just took about 20 of the stories, not that they were the most important. It was just so it was the first ones I did. So I just wanted that to be out there. And to share other people's journeys, because again, people will see that and realize they're not alone and you can also reach out to those people.
I feel like the world is a conduit, like where I don't really want anything from anyone. I just want you to go and reach out to those people. And you can speak to them, first hand. And I think that's a beautiful thing. But biggest problem in concluding later, anytime on a show is really awareness.
And, we're releasing a new book, which is very important next April for Parkinson's awareness fund, but the problem is getting them out there and knowing people, knowing that they exist, that's the biggest problem I have with Parkinson's awareness, we're on seven social media's.
I'm on 24 7 and we have 40, 000 people, all of them combined, but that's not enough. We need to reach the world through you all. I hope we can do that someday. Then I'm going to ask you, I know you didn't expect this to go to the way it did, but how do you hope to see Together for Sharing, continue to grow and impact the Parkinson's community in the future?
The first one is that it would end by finding a cure, so if we could do that, I would leave it up and just be happy and talk more about my mother. But I would, obviously the big thing is I need more people to be aware. We're actually working on a children's book and also the big one coming. It's actually just almost finished.
It's about policing and Parkinson's, which is the only one in the world. Can you believe that? And also my son's journey. The big reason I wrote a book was because I'm shocked and I challenged everyone listening. I always joke and say, please yell at me and tell me I'm wrong, but I'm the only, there's only book, son's journey of and it's not a visual, but that a son who lost their mother due to Parkinson's, it's the only book in the world.
And I'm shocked to say that. And I'm not proud of it because I was really surprised. I am. And that's why I did it. But again, we're gifted and lucky that the Michael J. Fox Foundation actually has it. listed on their website because I never dreamed they would be, my mother would be on their page so it's beautiful but it still hasn't gotten the awareness we need but the next book I'm really excited because of my background and I won't get into it maybe in the future but It's really to bring awareness throughout the entire police force throughout the United States that right now, and the statistics and the data for new trainees in the academy throughout the country, they list to mention Alzheimer's with Parkinson's disease is not mentioned anywhere really.
So this is going to be a research Facebook with 200 references. My PhD hat was on when I did it. And I interview people who have Parkinson's and talk about their interaction with police, interview 30 police around the country about their awareness of Parkinson's. And I also researched and spoke to one academy in every state and the findings are very sad, which is what I expected.
But it's a pro positive book and really something I hope can change the world and bring safety to police officers and people with Parkinson's because as you know better than me, because you're a nurse and many listeners. Parkinson's is a movement disorder, so if an officer pulls someone over, it doesn't matter the hour, time, day, or vicinity, or location, that person might not have taken the medications or it's wearing off, they officer might think they're drugged or drunk and it's not going to end well, but if they even just knew my dream of this book is just that every academy had it for training new trainees and sworn officers and that just to take one second to understand what Parkinson's is could save a life.
You know that I was going to ask you how your professional background in law, police and education influenced your approach to advocacy and awareness for Parkinson's and you just answered that. I'm also working on one this one take longer about the wall because there's a lot of people with Parkinson's who are being terminated falsely and violations of the laws and they're not aware. I don't want that to pay 300 an hour. So I'm actually working with two incredible women who have Parkinson's. One's an attorney with Parkinson's. So three of us are now actually, and I never announced this, but we're working on a book about the law in Parkinson's.
So I try to find, areas that aren't out there. I don't enjoy writing a lot because it's, the Sundays and days, I don't see my family. I think these all need to be out there. And again, it costs a tremendous amount of editing and just self-publishing had trouble with publishers. 'cause again, they don't really not aware and that's the problem.
So I won't stop fighting. I probably should because it, like you said, this is not easy and it worst feeling is that the books are out, but they're not getting the coverage. And I've written to 15 major networks, even in local and everything. They just don't respond. And it's heartbreaking over and over.
But that doesn't stop me at all, because this is more important there. I feel my mother and all we probably lost, 20 who knows millions of people due to Parkinson's that are often sadly forgotten. And I'm here to fight in memory of all the people we've lost because I think that they still matter and their families still have a voice.
Absolutely. Your commitment to finding a cure is very deeply personal. What do you believe is needed to push the Parkinson's research community closer to that goal? I don't like bringing up COVID and things, but the whole nation got abort, and really under, now and more and more, if you ask a friend at a party or a neighbor, all of a sudden they're like, you know what, my friend has Parkinson's, my cousin, or a good, everybody seems to be now connected.
And also there's been more national tension. And again, not to get too overwhelming, but just three months ago, through the House Senate and President Biden signed the first ever bill in U. S. history called the National Plan to End Parkinson's Disease. I have the honor to be a part of it. In South Florida, but it's the first bill ever in history and political world.
Number one that everyone agrees on. But that passed and I'm hoping next administration will really work on it and continue it forward. But that's incredible news. So now it is. Funding and also this is more sadder, but there's a the only way we can slow the progression since it's no cures through exercise and sports.
We have a show too about sports and how you can reduce the progression of Parkinson's through sports and every show, we take a different sport. We're going to be doing pickleball. We're going to be doing ping pong. That's what the whole show is about. But people aren't aware of that have Parkinson's or the family that you can actually slow the progression through things like rock steady boxing.
There's just so much out there, but people aren't aware. Just my biggest thing is really awareness. I think with it, we can be closer to a cure, but. If we don't have more people, that's why I wish people and hope they'll keep sharing my show. We don't accept money and it's very hard to put a show on and you know I just keep doing it.
I want to do one. My show is literally only for the parkinson's community and I can't reach all the parkinson's community because it's hard It's just me but this has been some incredible. Yesterday, we had the president and CEO of Rocksteady. This is a program around the world now, worldwide, where people go to join.
It's like boxing, but you don't, no fighting. It's just the movements and it's literally slow down and save lives. And I just think there's a lot of people who aren't even aware of it. Oh, that's a really important tip that you shared. I hope the listeners are paying attention to what you said, because that's a powerful tip that can help their family member with Parkinson's or themselves.
And I don't, it's 2024, but I don't want anything. So when we're on this show, or when we share it, we will be sharing it everywhere around the world to help make sure people are aware of the beautiful things that you're doing in your audience. But. I don't want anything in return except that no one again feels alone even during holidays.
And my mother actually was sad. I thought the other day she never met someone who had Parkinson's, and today I have so many friends and family who have it now. And I just think even if we had, if she had known that she would have been a little bit more smiling and a little bit less stressed, even though it's still, tough.
But that's one thing I wish for everyone. Yes, what advice would you give to family members and caregivers who are just beginning their journey with a loved one diagnosed with Parkinson's? Number one is really the book Sons Journey. Why? Because the whole, I never, it's funny because I'll do hundreds of the shows.
Of course, yours is unique and incredible, but we don't, we talk about Parkinson's, what it is, and my mother, we don't really have the time to talk about caregiving. But this book is for people who, and it's not just for people with Parkinson's, it's any, my mother, we thought also might've had late onset dementia, but this is really for anyone struggling, anyone, any disease.
And we just started on togetherbashram. com covering other journeys, not just Parkinson's because I want to cure for everything. I want to cure for Alzheimer's, ALS, everything. I don't want anyone to, so in the book it's very important. Because the index is one of the most important things, but it actually goes through first signs of Parkinson's, but then goes right to my caregiving my support, which was my wife, my children, finding good aids, great caregiving.
So we give a lot of tips and then the mission forward and how grateful I am to so many, but I go through like literal in depth, my stress managing my home life, my marriage. My children, and it's just so much in there that we'll just I never even it's funny whenever someone says that. I forget that there's like a whole world of caregiving that I never really talk about because the most important message is really.
I don't want people with Parkinson's to feel alone, but there are a lot more audiences and people out there. I think that would benefit from it. Oh absolutely the caregivers out there are the ones that would benefit from your message as well. I think sharing your caregiving journey is of the utmost importance because everybody like you feels alone. They feel abandoned by everybody. The health care system ignores the family caregiver and they have health issues that they ignore and many of them become very ill because of the stress. So I'm really pleased that you're going to consider covering that in the future. I know you have, you've got a good heart and you're looking to cure.
But until we cure, that's the thing that I hope that our future government will finally address 'cause they've been promising it for decades is addressing the family caregiver because the family caregiver provides over $650 million of unpaid care. Many of them end up at or below poverty level when their caregiving journey ends.
And they do without health care, they do without so much. And I don't think tax benefits for people that aren't working is going to matter. They've got to do something more to support our family caregivers. Because while we're waiting for a cure, we are causing illness and sickness in our family caregivers.
Yeah, I agree. And the more we all advocate, the better we all will be. Yes. Yes. George, can you tell my listeners how they can support together for sharing and get involved in raising Parkinson's awareness? Yeah, we have a free newsletter. Everything's free with me. There's no shark tank moment where I say, but wait, there's more.
If you go to together, F-O-R-S-H-A-R-O-N, so together for sharon.com, you can even just do a general search. We're coming up everywhere now, which is amazing, but we also have seven different social media, so please sign up and join us and all. It's just me. So it sounds funny 'cause people always think we're like this mega company and something, but we're not anything. It's just one son, me, who lost his best friend and mother. And there's a piece of my heart that's unfortunately gone forever, but it is being filled with positive, amazing people like yourself and your audience. And I do have one little message to give to everyone listening.
We love you. We support you. We care a lot about you, and you're never alone. I, along with your amazing host here, will advocate for you. And together, I feel our voices are so much stronger. I always end with saying I'm just getting started, because even though I'm not, I do meet people like you who drive me to one.
And when the lights and cameras go off now, And all the fame and the celebrities go away and the paparazzi from our show. But that's when we, the real work needs to be done and dust myself off. Even the days where I've had four back surgeries and horrible medical issues and realize that even from the ER, the second the anesthesia wore off, I grabbed my phone.
Made videos to get out there and keep advocating for Parkinson's cure because we need more people out there doing. George I've really enjoyed talking with you. It's just been an amazing A lot of information you've given us. I like to end my shows with to my family caregivers out there, remember, you are the most important part of the caregiving journey.
Without you, it all falls apart. So please, practice self care every day because you are worth it.
