Pushing Forward Parkinson's Awareness with Dr. George Ackerman

Dr. George Ackerman lost his mother to Parkinson’s disease and refused to let her story end there. His promise became Together For Sharon, a family-driven platform for Parkinson’s awareness, caregiver support, and education that now reaches thousands of people searching for answers and community.

Advocacy is not optional when research depends on funding. George shares what it’s like to go to the Capitol as a Parkinson’s advocate, what he learned through the Michael J. Fox Foundation community, and why Parkinson’s research funding should stay bipartisan. We talk about the fight for better diagnosis, including progress toward biomarkers, the harm of misdiagnosis, and the hope for a simple test that can catch Parkinson’s earlier.

Then we go where it hurts and where it helps: the caregiving reality. George describes dealing with medication changes, mobility trouble, and what families face across the stages and symptoms of Parkinson’s. The power of consistent outreach to elected leaders provides hope for a cure.

For more on Dr. George Ackerman:

Together For Sharon

Transcript

Welcome And Guest Introduction

SPEAKER_01 0:23

Welcome back to Out of the Blue, the podcast, where real people hear real stories of resilience, hope, and the incredible power of the human spirit. I'm your host, Vernon West, joined today by my son Vernon West III, a gifted musician and creative visionary who brings his own spark to these conversations. Today's guest is someone whose mission is as personal as it is powerful, a man who turned heartbreak into a lifelong calling, and who has built a movement that now reaches thousands across the country. We are honored to welcome Dr. George Ackerman. George is originally from Brooklyn, New York, now living in Florida, and he's dedicated his life to service, working in law, policing, and education. But everything changed on January 1st, 2020, when George lost his beloved mother, Sharon Riff Ackerman, to Parkinson's disease. In the midst of a brief George made a promise to keep his mother's memory alive and to fight for a world without a Parkinson. From that promise came Together for Sharon, a family-driven mission devoted to Parkinson's awareness, education, and hope for a killer. What began as a tribute to his mother has grown into a nationwide platform, one that now reaches thousands through interviews with foundations, researchers, caregivers, and Parkinson's warriors whose stories deserve to be heard. George has also documented this journey in his powerful book, A Son's Journey from Parkinson's Disease, a caregiver to advocate, inspiring countless families walking their own path through Parkinson's. George says, I'm on a mission, and nothing will ever stop me until there is a PD cure and nothing. And today we're grateful to stand beside him in that mission. So settle in this is a conversation filled with heart and purpose and the unstoppable love of a son determined to change the world one story at a time. This is Dr. George Ackerman, and this is Out of the Blue the podcast. Hi, Dr. George Ackerman. Welcome to Out of the Blue.

Parkinson’s Is Growing Faster Than We Think

SPEAKER_02 2:58

Well, thank you, your son, and actually all your listeners for the time today. Really means the world to me and my mother continues uh at least our memory to live on through uh both of you, but also if we even reach one person today that might feel alone like I did and my mother, then we've changed the world also for them. So thank you both again.

SPEAKER_01 3:17

You're so welcome. I mean, I personally have known someone who had Parkinson's and it was, you know, heartbreaking. That's a heartbreaking uh condition, illness.

SPEAKER_00 3:29

It's incredibly common too, you know. This is definitely something that a lot of people will find comfort in.

SPEAKER_02 3:34

It's kind of sad in a way of my advocacy because uh, you know, I never dreamt I'd be doing this, or you know, writing a book about it or any books, or having to put 24-7 into this. But as we are speaking, I was shocked to find out every 20 minutes somebody's diagnosed today with Parkinson's. And this is a worldwide epidemic. Uh, we have approximately 1 million people diagnosed in the U.S., but they believe in shockingly in only 10 to 15 years, it'll be 20 million. So it's going to go from one to 20 in just a few years. And that's just the United States. We have 10 million out of the US who also become my family because I don't feel anyone should ever feel alone in this fight for a cure, no matter where you're located.

SPEAKER_01 4:17

Amen. That's just really that's what this is all about. That's why, of course, out of the board, we stand with you in this mission. We would want to, we want to definitely get that out there. Yeah, it's it touches my heart deeply. And um, I can only imagine, you know, having your mom. So you really, really um, you know, it's just commendable and of course, and uh highly amazingly inspirational that you've taken this on.

SPEAKER_02 4:40

I think there's probably 80 million people, unfortunately, who lost the loved one or friend or in a community member to Parkinson, they just weren't aware in today's show and any work that we all do together, I feel is changing and bringing more awareness because uh there might not be a cure, but there are other methods and things to do and to take that people still are not aware of.

SPEAKER_01 5:02

Yes, yes, yes. I mean, they they are making some strides. Do you know anything about the things they're doing in the research and development of that?

SPEAKER_02 5:10

I've had the uh, you know, I started out, it's togetherforsharon.com, thinking it would be a website with three or four people see it, and I would be happy with that. Uh, unfortunately, as the disease grows, so does the advocacy. And I had the honor just a few months ago to actually be selected by the Michael J. Fox Foundation to be one of 200 uh advocates from the across the country to go to the Capitol. So I was at the Capitol advocating to politicians, no matter the side, because this is not a disease that discriminates, it affects people uh across genders, race, uh countries, states, and uh we have to again really voice to the politicians because they have the an imaginary key to unlock funding. And this year, unfortunately, funding has been cut significantly, which is really tragic for the Parkinson's community. But I'm just signed on to go back to DC in March. Uh last week, though, I was uh had the honor to meet with Mr. Michael J. Fox again. I met him before, and uh they've we in just one night at an event he put on in New York City, raised four million dollars for awareness. But in Mr. Fox's time, he's been battling it over 25 years, but he created a foundation to help with awareness, and they've actually that night they raise uh or so far, not that night, but in the last 25 years, they raised over one billion. But you know, so that's incredible. But it's unbelievable. Yeah. Wish we had, you know, we still don't have a cure, which is why it's tough. You know, every journey is different. So what happened to my mother does not mean that's what will happen to somebody listening or someone else's loved one. But since my mother passed only now six years, they created something called a biomarker, which was discovered through research just two years ago. Now you can, and it's kind of harsh, but you can have an injection in the back, and it's uh they take fluid from your spine. I've had enough back surgery, so I won't be participating, but it's uh where they the goal is to determine if you have Parkinson so you can be treated properly. Um, there's been a lot of misdiagnosis, and guess what? If you treat someone with the wrong illness or disease, that's tragic too. Right. And also it could the dream really, though, at least now for science and medical field, is that we can someday get to where it's a minor blood test in every doctor's office uh throughout the nation to be able to determine because right now there's no actual test for Parkinson, they just do a few little gestures and other uh things, but that's very complicated and very bad when you want to uh you know know what your diet loved one has or what that person has so you can treat it properly. So that's been one of the toughest right now.

SPEAKER_01 7:51

Yeah, yeah. I I that that thing with the needle in the spine reminds me of a lumbar puncture. I've had a lumbar puncture with leukemia. It's similar to that they stick a needle in your spine between your vertebrae and get some of that spinal fluid out and they they examine it. But um very uncomfortable, obviously, not a fun test. But um, if they um find a way to at least what have it determine if it's a case of Parkinson, right? That's the that's the main focus of that particular test.

SPEAKER_02 8:21

Yeah, because right now we don't we don't believe, we're not sure it's a genetic. We do, I feel, and many uh agree that it's environmental. So whether it's the pesticides, I just they just did a study which is also frightening. I'm in Florida, and they said it could be caused by golf courses. So we have one on every block. So my goodness. Yeah, the water, also this Campajune, which is a famous lawsuit. The military and their families were getting Parkinson due to the uh water that was uh, you know, chemicals in the water there and the families were affected. Uh, but I do think environmental, I was shocked to find out of one of the nation's leading uh doctors for Parkinson's said on my show that you can actually possibly get Parkinson's from the dry cleaning. And while he was saying that, I was thinking of ways to remove my shirt. You know, it's frightening. So now what we do, and there's ways you take, if anyone listening, if you have dry cleaning, just take it out of the plastic, let it air out for 10 minutes outside. It might stop it. So a lot of doctors are now saying and making claims, or some people are shocked, some people agree that this is actually something that can be prevented. We have right now there's a uh chemical, it's poison called paracoy. It's banned in every single country except uh, I believe Australia and the US. And they're just not banning it. So we go back to DC each year to ask them to ban it. There's two reasons we just spoke. You could uh you can get ban that, that'll stop a lot of this, can fix some of those pesticides sprayed on our food that our children and babies future are eating. Uh we need to do every day. There's just there are a lot of things that are happening, but people need to write their legislators and demand them for change.

Taking The Fight To Washington

SPEAKER_01 10:00

Right. So if we listen and please let's think about that. Let's get on our, you know, let's get on our horses and do something. It's up to us to affect this change. I mean, we we put people in government. Um, we shouldn't just like let them go automatic pilot. So this is what we should be doing. We should we should get everybody um motivated to do something like that. Because if this is environmental and if it can be regulated, if government can set regulations in place to stop paracat from becoming you know commonly used, not to mention like how it must appear in vegetables and fruits. And with with Parkinson's, the the research is getting to the point where you've got a good idea of what you got at least some solid proof. I think paracord is definitely not uh not on the on the um that's not on a good list. That's on the not not good list, right? That's the list we've got to do something about.

SPEAKER_02 10:52

And also the uh, you know, past uh uh the spug sprays too in the home. And I think that's what my mother, you know, she had no medical issues, she was perfectly fine, and then she was diagnosed for 15 years. We didn't know though, I didn't even know Parkinson's was a disease until the last four, because we were told by a 15 specialist that you don't die of Parkinson's, you die with it. So we were kind of humming along and thinking that this is it stinks, but it still she'll be with us. And then all of a sudden, uh if you read the book, which I'm gonna get you both a copy, but uh some she went for a trial, which we recommend trials. That's how we find cures. But she came home that night and I got a call. Uh, you know, I'm in Florida, my father's in New York, said a call at 4 a.m. Rush over to your mother's house. I didn't know what was going on or why, because nothing this never happened. Well, I reached her home at 4 a.m. Even with law enforcement background, I wasn't prepared for fine. My mother was moving her furniture out of her home. So I asked her what was wrong, and she said she thought there were Nazis in the house and they were going to harm her. And we don't know if they changed the medication too drastically, but it caused hallucinations and delusions. And some people due to Parkinson's or side effects. So that was really some of the that was the start in the down slide uh of my mother, unfortunately, illness uh disease accelerating, and and we don't understand why it was so quickly. But she went from someone who could walk a few miles a week to two years of a cane, then a year of a uh walker, then wheelchair, and then the last seven days she was bedbound and only had a heartbeat, which Florida not sure why we don't have the law for death of dignity like New Jersey and other states do. So I don't think there's uh really anything ever in my life going forward that'll be as tragic as those last you know seven days of her life.

SPEAKER_01 12:44

Oh my gosh, George, my heart breaks, it really does. So you are good. And um, I will say this uh people should realize that it can happen to you. It's you are not it's it happens everywhere. It's there's nothing to do with socioonomic socioeconomics, it has nothing to do with uh even heredity. Everybody is uh susceptible to this. We need to realize that. And you're saying it's gonna be 20 million. I mean, that is an alarming number. Uh that that should be that should set off bells in everybody's heads. And but the f the problem I see with with the with the podcast out of the blue, we we've brought a lot of things to raise awareness and different types of uh uh uh problems. Uh and what what what I find is that the stigma of these things uh makes people want to not talk about it. Makes them want to uh forget it, like put it in a corner somewhere until it hits them. You know, until it hits their own family. And then it's too late. You know, we have to become uh aware that this is a family. We are all in one big family. And so sooner we get that mindset, uh, we're gonna be dealing with this kind of stuff. You know, we need we need to listen to Dr. George Ackerman and everybody and and y follow the lead, you know, that we have to care and go out there and do something about it.

SPEAKER_02 14:03

I want to thank you both because I love the name of your show. That's what attracted me to it because I felt like you know, Parkinson's literally it's came out of the blue. Like I don't think I can name this even I have to name the show and your show the same thing this week because uh it was just something that changed my life forever and not to get too long into it. But I don't blame the doctors, I don't blame uh, you know, the people we've met, I blame the disease, and I kind of don't want to, you know, but 24-7, all I could think about is making sure my mother's not forgotten because of the disease, but in her memory, we fight for everyone else and all the other families because I don't want them to go through this. My mother and I thought she was the only one in the world who had Parkinson'cause we didn't have anyone, we didn't know anyone, we weren't aware. That was the problem. I didn't even know that Parkinson's was actually the disease until it was kind of too late. So uh shifted my whole life, was geared towards uh the world of law enforcement. I became an attorney, worked at the prosecutor's office, then became a police officer, and then I did my PhD in criminal justice, which changed my life for the better because I was able to work with a group of African American mothers who lost their loved ones due to murder in West Palm Beach, Florida. So I finally got to work with, you know, people uh who lost, you know, a huge part of them. And I found the only way they were re able to get back into the world and still live after such a loss was through faith, uh, you know, religion and community. Because without those pieces, they would never be able to uh do that. And I do it now today through advocacy. And again, just meeting both of you today and your audience will help me also cope because I'm still grieving even six years later.

Better Testing And Environmental Risk Clues

SPEAKER_01 15:48

Oh of course, you are I mean, I am also actually, you know, uh I I'm very empathetic uh and I just uh uh yeah, I'm feeling a lot about this myself, but um nothing compared to you, of course. But um I definitely feel that um this is a community is everything. We have to be that community, sense of community that's helping those uh the women who've women in in uh South Florida that you're talking about. That that remo that's so so so important. Community is very much what Audible is about. Like we we say we're starting a resilience movement, but it's a community. It's a community of people that don't want to he anybody suffer alone.

unknown 16:29

Uh-huh.

SPEAKER_01 16:29

There's no need to have any kind of uh suffering by yourself. We there's somebody out there that's been through that that that can help you, talk to you, uh, and maybe even just make you not feel so uh unique. Because that's a that's a painful aspect. It's it separates us from from from healing. Like I noticed that when I uh when I have my own pain in suffering, I I felt unique. I felt separated from the communities. It's like look at a look at a gr uh uh uh you know, um uh what do they call them? Let's say a bunch of animals, whatever a pride of lions or something. But when one of them gets sick, they go off by themselves. They don't they you know what I mean? It's almost like a natural instinct to separate yourself from the community because you feel ill. You know, I see my cat, I've had a cat do that. When he when it got sick, it would go hide under the couch. Because it they there's some reason they're they're embarrassed or ashamed to be sick. That's gonna stop. We have to say uh we have to welcome uh anybody suffering and we have to be there for them. Because that's what it's all about. That's what life is about. I found that that's the whole reason I do it out of the blue. Because when I when I got to the point where I thought I was gonna well, I didn't beat leukemia, when I got to the point where I knew I was gonna come out the other end and uh standing or at least alive um I said I wanted to pay it forward and I and I was inspired by uh the words out of the blue that everybody that's gotten any kind of serious illness or anything, it always seems to come out of the blue. And I thought like how can we take something from out of the blue and turn it into something that connects us? Because it is something that can connect us. And I think that's the essence of your together for Sharon is about connection. It's about connecting with other people out there who don't know about Parkinson, for one thing, raising awareness, and possibly people out there that are have it that have that in their family, in their life, that feel that feel that aloneness, you know. Um, so that's why it's so wonderful what you're doing. I really just can't say enough. Tell us a little more about how you're doing that and what you're doing in Florida now with your career, and uh any more information on that we can share?

When Medication Changes Everything

SPEAKER_02 18:50

Yeah, I mean, uh, you know, every year I kind of don't have a plan on purpose. I hope we could find a care and I could stop it all. But I uh I am excited. There's a lot of big things. We actually published uh, I don't want to say last, but I think it might be the last of the children's books coming in January because I have three children and I still have trouble explaining what happened to their grandmother. So I wrote a few books as we spoke. Uh the first one was my about my mother and our journey. But as I was thinking, uh, you know, as I was advocating, I was realizing there's some areas that are just missing, you know, that no one is speaking about. One is uh lack of awareness and law enforcement and policing. That's a whole different show. Uh there was one where I felt uh as an advocate, it wasn't always easy. I've actually had very odd things, you know. You think you get into advocacy, it'll be simple, easy. Had doors slammed in my face, people not want to speak, others just the media not really caring, uh, politicians shutting their door. But no matter what they all said, I just keep kicking and pushing and crawling and can't give up. And sometime, some way, the door will even open a little. I'm traveling now, which I didn't want to do because it's very expensive. You know, do all this voluntary, uh, but we've uh also we our family donated last year like$50,000 to different organizations. I can't keep all this up, but also um I can't say much, but there's a chance we might be doing our first ever walk for together for sharing with support of my police department in the city I work for, and that might be bigger than anything. You know, I've never done a live event on purpose because it's a lot, you know, you have your reputation, you have I don't want to deal with money and things, but we'll be picking an organization to everything will go completely to them. I don't do this uh, you know, for money, I just do it for awareness. And the last thing is I'll be traveling to Arizona in May. Um, it's not easy because again, it's uh well it's hard to travel. I've had a lot of my own bat medical issues, but there's something called the World Parkinson Congress, and it's every few two years, I believe, and it's usually not in the US, it's out around the world where all advocates, doctors, scientists, researchers in the Parkinson's community get together for a conference, but it's the only one like it, and it's just where everyone comes together. I'll be meeting, I've interviewed and have 2,000 people written and 350 on my show. Uh it's called QA with Sharon St. George, where I sit one-on-one with actually not celebrities. We've had we've had some Bernie Kozar, the famous football player, has been on. I have another famous uh comedian coming next year. I've had politicians, U.S. Senator Rick Scott's been on. So we're you know, reaching places, people, but uh you know, I just don't feel even if I do it day and night, it's enough because as you saw earlier, the numbers are the people diagnosed are growing. So I feel like it's almost like a hammer, or that little what's that video game where you bop the little gobs. Yeah, I feel like I'm the mole. Like every time I jump up for air, I hit it again. But that's how it felt in a way, even when I was you know helping my mother, and I just wanted to say what. One thing, if you're not aware, everyone, of Parkinson's disease, it is the fastest growing neurodegenerative disease in the world. But what it does is uh a few of the quick symptoms and signs you might see is tremors. Now, not everyone has external tremors, some have internal. External would be like the famous actor Michael J. Fox, who's a hero of mine. He has external tremors, so sometimes it's hard to stop. You'll see him in interviews where he just is moving. Same thing with Muhammad Ali. And recently, unfortunately, we lost another beloved Parkinson's warrior. We call him Ozzy Osborne. He also was battling Parkinson. So, in the way they, you know, I do this too, so they never forgot him. But some other symptoms are handwriting becomes smaller, loss of smell, very bad sleeping, uh, sometimes stiffness and balance issues. So the five stages of Parkinson's. So the first two or three are where you uh you can still live independently, but it starts to get a little bit more troublesome. And one thing we worried about a lot with my mother, we never wanted her to fall. Because if she fell, that would have been uh the end of a lot of this, uh, even trying to support her because that was gonna now affect you know so many other areas. But so for the stages one to three, I often say, you know, you might see some of these other areas like uh um softer low voice, something called facial masking. So if you're speaking to someone, they might look like they're not listening or really able to make an expression, but they are also uh some sadly dizziness, fainting, uh stooping, hunching over, and one of the ones we don't talk about a lot is constipation. A lot of times my mother was up 24-7, so we had to hire staff, like literally to make sure she uh you know was able to just be uh kind of feel safe. Then you add on the hallucinations and uh delusions, and she thought every person we hired was going to harm her. So that was just adding to it. And then as a caregiver, you also go through your own stages, which you know there's no such thing. But uh, you know, I went through everything from fear, depression, stress, anxiety, you name it just to figure out a way to help her. But the five stages as you get to the last three or last two are the toughest. That's one person might even fall, might have trouble walking. So stability is an issue, and I'll never forget one of the saddest days of my life was making a decision that I had to take my mother's car keys away because I felt she could be a danger to herself or someone else. So when you live alone and independently for 20, 30 years, the only thing you have is independence. And you take someone's car and she's not arrested or criminal, or anything, then that's it. So there's just so many thing topics. So and then the last stage, again, five, is where they uh you know, almost uh towards the very end, my mother was almost, you know, just not with us. She couldn't really eat, uh, couldn't talk, and it was uh, you know, it's almost like a disease that's gradual, but the problem is no stages are the same for anyone. So that's why we have no cure because everybody's you know journey is so different.

SPEAKER_01 25:16

Yep. It's a I can see that this would be hard to diagnose. People might be dealing with it and not even be aware of it.

SPEAKER_02 25:24

And one thing we're trying to get rid of is the misconception, it's an elderly white man disease, because that's what we thought in the beginning, but now women are getting it. I had an interview with a young lady who was actually pregnant while she had Parkinson's, and those are questions and issues that need to be also addressed so that women don't feel alone. Also, African American population, other population, this disease doesn't again discriminate, it affects everyone.

SPEAKER_01 25:49

Well, well, you know what this is really helpful for people out there to understand that these these stages don't necessarily the first three are probably something you wouldn't even think I have Parkinson's or somebody has Parkinson's. But um, if they go in, they can get this tick this kind of test now.

SPEAKER_02 26:06

Yeah, the thing with the test is great, is that you know, we don't have a cure, but we do know that sports and exercise, and I wrote a book on it, but it's can slow the progression. Now, again, it's not guaranteed, but you so let's say, well, guess what? If you don't know you have Parkinson's, you're not gonna be able to even slow anything. So let's say you know you just found out, well, you can get on a little program. I mean, we should all be doing this, even if we didn't have Parkinson's, even the caregivers, but something you could do with your loved one, and together you can do it. But uh exercise, you know, I wrote a book, it's actually 30 stories of 30 sports, uh, and they're all told by different people who have Parkinson's. And I did that and I didn't accept anything. Like literally all the money goes to them because I wanted to, I don't want people to have to pay for their own medicines. So uh each what what the goal with that book is, you know, we have sports out there, but if someone hates a sport, many times like my mom, they say, you know what, sports is not for me, and that's they shut the door and that's it. But what I'm trying to show is if you hate one sport, there's still 30 or 100 more, why not go try something else? Don't just give up. So I didn't even know they have you know ping pong for Parkinson's, we have pickleball, bowling, you know, tennis, so many golf there's groups out there now doing things, as you know, walks, is uh I uh because I had four back surgeries. I have a trike. Some people don't know what that's where you like kind of lay down and you use the bike, but uh you know, it's like more reclined. But anyway, there's so just you know, you gotta keep exercising. So they do think the science shows it can slow the progression. So maybe you that person would have several more years, and that's important. But again, it's you know, we're not sure, you know, who is at what stage, and it also you have to see uh your own specialist, a motor movement specialist. Uh anything I say is not science and not medical, so I want to make sure I always it's just my experience through my mother and our caregiver.

SPEAKER_01 28:00

But you you seem to be making good strides in this area. Michael J. Fox is an amazing human being. He has he's raised awareness so much to Parkinson's. I mean, I c I can say that I myself am a fan of Michael, and I I remember when he got uh Parkinson's many years ago. And uh my my my heart broke down, but he's been so courageous and strong. And I think that that that that uh desire to spread the word and help people with that has kept him going. I mean, I can see that as an advocate. Would you say that helps you to keep going? I mean, I know how much pain it must be every day to think about what you you lost, but by by advocating, wouldn't you say that how's that work into your life?

SPEAKER_02 28:45

Yeah, I think without it I wouldn't even make it. That's the honest opinion. And every time I meet somebody like today, you know, my mother kind of lives on in her in her memory. And every interview I do, an inspiring person, I had a guest, two gentlemen, there's actually four of them, they got in a boat and they literally with nothing, a little teeny boat. It almost looks like a rowboat. They paddled their way to past Hawaii around the world and raised money for Michael J. Fox Foundation. They've raised like$30 million and just this, and one of the gentlemen on the boat had Parkinson's and didn't give up, and they documented it. And it's just uh they were on my show, which was an honor. But those stories uh and those people, uh those that's what keeps me going. And uh knowing, unfortunately, there's still people out there struggling. But also the only journey that breaks my heart today is the one that I'm not aware about because there are people out there I don't know, you know, we're only one person. Some people joke and come to me and say, you know, can they get an interview or this or that? And it's like they think we're a whole corporation, but it's just me. So they like, you know, I just don't give up and I don't stop. I mean, sometimes my own, you know, they the famous saying, which I'm tired of hearing, is you as a caregiver, you have to take care of yourself before your loved one. I never did that caring for my mother because we didn't know how much time she had. And I'm glad I didn't uh take even a minute away because then I would have missed that minute. Is no polit even politics is not an issue. You know, they uh last year was the first bill US history in December that passed through the former President Biden. It swept right through the Senate and the House, like nothing I've ever seen fully unanimous uh to vote to pass the national plan to end Parkinson's because it's not uh political, it's bipartisan. Everybody wants a cure. I think it's the only bill I've seen in years, uh, you know, that no one argued about and they all said yes. So unfortunately, with the new administration, it's kind of hasn't, you know, since last December, they had they're supposed to have a council. They haven't seated it yet. I've been nominated by 40 people around the world to be on the council, but I don't know if I'll you know be assigned or get it. But this is one thing that, you know, we need to fund research NIH, and that's another thing we ask when we go to the Capitol and everyone out there, write to your congressmen and women, doesn't matter what party, what local, city, county, federal, state, and tell them we need more funding.

SPEAKER_01 31:13

That's the thing. Everybody listening today, and what whenever you hear this podcast, do that. That's simple as simple as that. Call your write your your local congressman, your representatives, everybody you can reach out to, and you're gonna feel better for doing it.

Symptoms Stages And The Caregiver Toll

SPEAKER_02 31:30

It is a literary, I've done it, and the problem is if I write a letter, no one they don't care, but if everyone at the world flooded them, they would care. But it just takes you write a paragraph and you email it, you can message on their social media, you can call them, and if you don't get them, ask for their you know schedule or and ask for in a meeting. Don't just send it and say, all right, they got it, move on. You gotta still keep up with it till they do something. So that's the next part. It's send the letter, make the call, but don't just stop even once a month for three minutes. Uh that would be incredible. But I think, and I'm pretty positive if we the whole country, you know, did this, made answered your call and did uh and your message and mine and all of ours, and we would have priority have a cure.

SPEAKER_01 32:17

I think that's that's that's a unbelievably great, powerful point that you it doesn't cost anything.

SPEAKER_02 32:23

Yeah, right.

SPEAKER_01 32:24

And you do it, you don't just do one, it's not a one and done. You gotta do one, and then you gotta follow it up again, and you've got to check back and say what's going on, are you doing something about it? You know, just keep on it. Because if once when they know you care, that's the essence of hopefully, uh hopefully that's the essence of anybody that's got elected into politics. That's a different uh for another I know that is a different show right there. Um Verna, do you have any any opinions about what's going on in your age group? How is Parkinson's view? Do do people know about it?

SPEAKER_00 32:58

Yeah, oh yeah. Um but I mean, I think it's I think it is very common. I think I've I've heard a lot about it. I mean, as Michael J. Fox is a is a famous charismatic survivor of it with it. And I think that that's he's he's beloved by my you know my generation for his you know his amazing acting and his looking back to the future and all that stuff. Um so we like I'm aware of it. I have friends that have you know dealt with it, and I think I think it's just something that we isn't really discussed is the fight to cure it because it does seem like such a helpless thing. And then if someone is dealing with it, you really have so much love and concern for the caregivers like we were talking about. And like like my my heart goes out to you, George, and like I know that you said you're you're working tirelessly and it's hard to take care of yourself and things, but you know, I I hope that you do find the time and the gentleness to to be there for your yourself and your health. And I you know, I'm grateful to hear that you have a community and you're fostering the ability for other people, other caregivers and other people who have been affected by loved ones having this to have a community with each other because of course you prioritize the health of the person going through it, but it is also very important for people like you who are using their health to protect those loved ones that are that are suffering to also be protected as well, and to have people that give them like the motivation that maybe the person that they loved once gave them. So that's and and I think we definitely need to be for a lot of reasons reaching out more to our local politicians, asking them for just some some eyes on certain things. Like even just even just awareness is good. Like even if they can't uh do anything immediately, uh awareness is really important. So I think that the like there's a lot of small things that we can do in our day-to-day.

SPEAKER_01 35:31

That's it. You don't need to be have thousands of followers, just put it on your account if you have 200 followers, because 200 people that maybe don't know. And I think the the biggest takeaway I'm getting from today, George, is there's some hope in that they're looking for a cure. Now, do you have any more information about that that we can maybe leave our people leave people with before we wrap up?

Treatments Exercise And Realistic Hope

SPEAKER_02 35:53

Yeah, I mean, there's definitely a lot that's uh you know to be excited about. And uh, I mean, just for I was at a round table with the Michael J. Fox Foundation, and they provided this uh important information that now we have uh you know more motor. The the biggest thing is you need a movement disorder specialist. So now we have uh 103, which is not enough, imagine the whole, but we need more individuals going into the field of motor uh specialty. This in 79k uh thousand more patients out there being cared for. There's also a lowered screening age eligibility for some of the programs uh you know out there. We want to give more people the ability to be, you know, to find out to be tested. There's 175 plus drugs in testing right now. Right now, there's not that it's all uh Levodopa is the famous one, carbon Levadopa, and that's the main one. That just helps with tremors if the person has tremors, but uh it still doesn't you know slow a lot of the other issues, and sometimes they can cause even more. Uh FDA has approved an increased number of treatment options for people with Parkinson's. There's three dopamine treatments and two surgical. One is the uh it's it's the one it's called deep brain simulation, and they actually will uh you might have seen it where it's not for you know, everyone. My mother was kind of scared of it, but there's a lot more innovations and technology just keeps improving. That's also helps uh control tremors. You know, if you can control tremors, it's hard to do anything, unfortunately. Uh, and that's not even the only symptom of Parkinson. So there are things happening, and there's a lot more events, and the science is promising, the community is united, and there's a clear path, but we have to have everybody out there, you know, uh involved. It can't just be a few people or even uh, you know, a thousand people. We need everybody out there talking, uh contacting their representatives. Uh nice thing is together for sharing.com is completely you know free. It's another resource. I've built it myself because I thought that when I was struggling with my mother, we didn't know who to call, what to look, and I decided why not just bring everything like uh into one site and get it for free, which sounds also today. You'd be surprised I spent so many hours in 2025 explaining why I'm doing this for free. And I even talk about advocacy, which is kind of sad for society. But yeah, it's a state. Yeah, I challenge everyone to go on there, and of course, unfortunately, you have to charge a small amount for any books just because I have to pay to print it and send it. But even the ebook, like we said, I'm giving out now through the holiday completely free.

SPEAKER_01 38:37

So speaking of the book, I just want to show this. There's the book, and that we want to tell you what a wonderful book it is, and it raises it raises money for Parkinson's, and that's what we that's what it's all about. Because Dr. George Ackerman is totally dedicated to his mother's leg m memory and legacy. And wow, we couldn't have been more honored to have had you for a guest today, Dr. George Ackerman.

SPEAKER_02 39:02

I want to just say as we wrap up, I never say the show ends because after the lights pop her out and camera and close, we still have this conversation because we still have work to be done. But I wanted to let you and everyone know that we love you, we support you, we care a lot about you, and you're never alone. I, along with our incredible hosts and this beautiful show, I think will advocate for you, and together I feel our voices are so much stronger. And I always kind of end my show with just I'm just getting started because although I've been doing it for almost six years now, on the days that are, you know, from the hospital like you too, you know, you got tough days, you have health, you have medical, you have politics, you have family, and then you feel, at least I do, like maybe it's time to step aside and give up. But then I hear another inspiring story, or another person out there struggling, and I realize that we have to shake ourselves off and jump right back up and get out there and keep advocating until there's a cure for everybody around the world. So thank you both.

SPEAKER_01 39:59

Yes, like you said, like I said in the intro, I am on a mission and nothing will ever stop me until there is a PD cure. Nothing. And today, uh George, Dr. George Ackerman. We are so proud to stand with you together in this mission. And um this this is an ongoing thing. This is just the beginning. So we'll be in touch, obviously, for future. We'll get you back again even to keep get get back and tell us more of what's going on, inform spread the word as much as we can. And um I just really want to thank you from the bottom of my heart for sharing your time with us. You are an incredible man, and your mother is very proud of you. I can just tell that. I know she is. And I gotta say one thing, my son Vernon and his sister Jackie, they both were my caregivers when I first came home from the hospital. Okay. And my wife got COVID.

unknown 40:51

Okay.

SPEAKER_01 40:52

So I was stuck in bed. And these uh these two beautiful kids well, they're grown-ups now, you know, but call you know, we call them kids. But um, they took care of me morning, noon, and night, and it was amazing. What an outpouring of love it is to have someone that you love being your caregiver. It is something uh very special. It's uh I think it maybe even I I don't know. I think it's it's it's uh it's the answer to everything. Uh just gotta help each other, right? Take care of each other. Uh and that's what I like to leave everybody with on at the end of the podcast is first of all, thank you for joining us here on Out of the Blue, the podcast is our special guest, Dr. George Ackerman.

unknown 41:30

Uh-huh.

What To Do Next And Farewell

SPEAKER_01 41:30

And please do everything we said in this podcast as far as raising awareness, write your congressman, get on it, send emails, don't just don't just send one and done, follow it up, and check back and also go to the website that we're going to post at the end of the website at the end of the episode. Uh-huh. And also information on how you can get a copy of A Son's Journey Parkinson's disease, Caregiver to Advocate by Dr. George Ackerman. And thank you so much. And remember everybody, take care of each other. Thank you very much for joining us. Out of the Blue, the podcast, hosted by me, Vernon West. Co-hosted by Vernon West III, edited by Joe Gallo. Music and logo by Vernon West III. Have an out-of-the-blue story of your own you'd like to share? Reach us at info at out of the blue-thepodcast.org. Subscribe to Out of the Blue on Apple Podcasts, Spotify, or wherever you get your podcast. And on our website, out of the bluepodcast.org. You can also check us out on Patreon for exclusive content.