Hey , hey , everybody , Welcome back to Conquering Chaos . A mom's guide to self-care and sanity . I'm your host , Sydney Crow , and today we have Dr George Ackerman . Welcome , George . George lives down in Florida . He's originally from Brooklyn , New York . He had his mom recently pass away from Parkinson's , but he has pivoted his lifelong career of advocacy , whether that was in the criminal justice area to now in the medical realm . So I'm really excited to have this conversation with you today , George .
Speaker 2I appreciate your time . It means the world to me and my family to be able to speak to you and your listeners today .
Speaker 1Yeah , I mean , why don't you share to the listeners a little bit more about yourself and who you are and what this journey is all about for you ?
Speaker 2Yeah , I started my journey , my career , first in the world of law enforcement . I always had a dream of helping victims of crime . I just wasn't sure how to do it . So after some time I decided to go into law . So I worked in the prosecutor's office intern and I saw that there just wasn't enough time to help victims . So I wasn't sure what better way to help them , support them , so I decided to go into the field of policing .
Speaker 2Found out again , you just don't have time , like I would have liked , to hand a brochure and you have to move on to the next call .
Speaker 2So I did find myself kind of not lost but wondering how I could make an impact , and luckily through teaching as a professor , and then my dissertation was in the area of family members of homicide victims .
Speaker 2So I was really had an honor to work with a group of African-American mothers in West Palm Beach who sadly lost their loved ones to the murder crime , and I was really impacted myself because I was able to sit almost knee to knee with these individuals and help them , you know , reintegrate back into society . So I've always been an advocate . Unfortunately , I was thrown into the world of caregiving when my mother started to decline the last four years of her life . She had Parkinson's disease for approximately 15 years . It didn't really affect her whole life like where she wasn't able to be independent for the last four years , and that's when I really took over and cared for her . And I always say I don't think I'd be the man I am today if it wasn't for her sacrifices . So when it was time for me to kind of step up and help her , I was ready for the challenge .
Speaker 1I can completely appreciate that and it's a challenging journey but a beautiful one when you're able to be there for your loved ones . I mean , as you know , my father recently lost his life to PSP , which is very similar to Parkinson's in a lot of ways , and in his journey , thank you , wasn't as long as your mom's from diagnosis , which was misdiagnosed originally as Parkinson's , to his passing was less than four years , and it it is . It weighs on you a lot in the end . So why don't you talk a little bit more about about your mom's journey , about your journey ? I mean , you've been a very strong advocate for Parkinson's and to raise awareness for it . So I know that you were recently at the Unity Walk and got to meet Michael J Fox again . Why don't you talk just a little bit more about how you are able to advocate and what this means to you , to bring awareness to it ?
Speaker 2Yeah , as you have , and I'm sorry again to you and your family for your loss . I wish we could end all these diseases . I just you know there's different types of people think you're like me , we fight back . I could have just kind of went away , you know , and remember my mother between us and that's it . But I started together for shramcom In her memory . I thought maybe three people would see it . We've had over 40,000 people visit .
Speaker 2I don't know how , why or what , but part of me is worried that that means the disease is growing . It's the fastest neurodegenerative disease in the world , not just in the US . It was only two years ago I discovered that 1 million people approximately have Parkinson's in the US , but also 10 million in the world . And I was shocked because I you know I'm in the US , I believe you are , and kind of just in our little bubble . You know I love other countries but I never think much about them because you know I'm stuck in Florida . So when I discovered that I decided it's not about my mother and me only . So I interviewed 600 people around the world from England , france , spain , iceland , even Nova Scotia , australia , africa and just was shocked to find out Parkinson's disease doesn't discriminate . It can get to , unfortunately , everyone anywhere . And that's when I decided to go on the journey and it helped me kind of grieve and cope . Even today , speaking to you , it helps , but the more I kind of remember my mother's memory it helps me still . It's been four years .
Speaker 2But one quick thing is if you can see the this side , that's not real . We just released a book , a week or two ago actually , and I didn't really have a dream . I've written books , but more about constitutional law and you know the legal matters , but this is the first in Parkinson's awareness because I wanted to share my mother's journey . But it goes through this before you know , beginning of her life , how she was a school teacher and had a master's in psychology but gave it all up that sacrifice and take care of and raise me and my brother . So that was . And then it leads up to Parkinson's and our struggle . I actually documented in my own little journal , which I never did before , the last year of her life . If we have time I can read just a teeny paragraph , but it just brings you really inside that the good , the bad and the ugly . But there is a good side at the end , which is I met some incredible people like yourself and your audience , who really inspire me to keep pushing and keep fighting until we find a cure , not just again , again for Parkinson's , but for PSP , as you mentioned .
Speaker 2Actually , if we have time again , there's just so much to talk about . There are a lot of individuals who are misdiagnosed and that's a big problem because you can't get the right treatment . Some people aren't diagnosed early enough but you can't get the treatment . We don't know what happened in my mother's case , doctors , we went to 15 . I did everything you could dream of and more . So I have no regrets , except we didn't have a cure .
Speaker 2But you know , it's just very tough type of topics . But there is a light in the tunnel of darkness at the end of life because I've been able to , you know , meet so many incredible people . Even today I got a call from a gentleman who has Parkinson's , not doing well , but I met him on social media . He wrote a book and you know , a lot of times people are scared to meet me or talk because they think in 2024 , you want something in return . But when they speak to me , when they meet me , when they get to know me , they're in kind of shocked , I guess . But I don't want anything in return . We don't accept money . The only thing I do accept is that everyone listening can please share this and support your show , but know that there are people out there like us fighting for them , and I'll never stop until the cure .
Speaker 1I mean , it is just a beautiful journey that you're on and you're raising so much awareness . I mean the fact that you started your website with the hopes that you know maybe three to five people would see it , and now I think the number you said was 40,000 .
Speaker 2It's secret , which is not secret , but if you scroll down a little there's a little counter . I didn't even know if someone told me and it actually tells you how many times people visited , which is so cool , and you know . Again , I don't do it for any of that , but I just , you know , I want people . The only journey is my favorite saying which is not good , but my only . The only journey is my favorite saying which is not good , but my only . The only journey that breaks my heart is the one that I'm not aware of , and there's just so many incredible people out there , like yourself and your family , that just people aren't aware . And if they were , I guarantee we'd have more support , we'd have more people involved . You're always going to have the cuckoo people I'm not like , even we just happen to be talking and we .
Speaker 2I was at the unity walk of such a dream . I got to meet Katie Couric , which is like a legend . It was an act . I got to meet Muhammad Ali's daughter , who I interviewed a year ago , but I got to meet like 20 to 50 people who I've actually interviewed already a year ago , but we never got to physically see each other because there's no way . I'm just . You know they're all over the world , so there's no way but this brought everyone together so we posted .
Speaker 2Michael J Fox wasn't supposed to be there . He shows up out of nowhere . I happen to be standing there . He gave a speech . He wasn't doing too well , which was tough to see , but I love him , he's a hero of mine . But you put that on YouTube and you got this wacky person saying so what happened ? I don't want to go . So this is funny story I put . I try to film things when I'm live because I want to share the whole people . I want people to feel it , because a lot of people might have bargained they can't travel , so I try to get things early . Well , when I do it early , there's no one there . I do that on purpose so people can get a feel of it . So this doofy person and I'm in law enforcement and attorney , so I don't care , but it bothered me a little . Still , they write for such a good cause . There's no people there . I mean the guy , we . They raised over two million dollars , I think in one day . They're over like thousands of thousand people . But because I didn't put it on my video .
Speaker 1So you're always going to get that .
Speaker 2that's actually what a future book I've already written is going to be about . Is you know , whether it's social media or in your real life , never , ever , ever , let one person , some stranger or anyone tell you not to do something that your heart says to do , and in my case it's fight for others and , like I , said no matter what happens ? I'll keep doing that .
Speaker 1I mean you're just such a generous and giving soul and I mean this definitely is a cause that needs as much awareness as possible . I mean , like you said , I'm actually up in Canada , but I mean this disease does not discriminate and it kind of comes up out of nowhere . It really it feels sneaky . At least that was for me . You know , one minute my dad was doing okay and the next he just wasn't . The decisions that were happening , there were circumstances and and we needed , there were red flags that were coming up , but in those moments it just it felt like it came up out of nowhere . And I know with a lot of diseases like this I mean a lot of times it can it just feels like it comes up out of nowhere . Can you speak to that a little bit ? I mean , I know you've documented this journey with your mom and you've raised so much awareness . What is your ?
Speaker 1take on that .
Speaker 2Yeah , I do want to say I love Canada because I've actually interviewed Parkinson's Canada so they actually share my information . I interviewed their staff and right now it's a long story fast In the United
States . Last December was the first time in US history we passed through the House of Representatives the national plan to end Parkinson's disease and sadly but excitingly in both words we've never had any laws ever in the history of the United States with people with Parkinson's . Now we're trying to move it to the Senate . But my dream is , if and when it passes and signed to law , I'd love to see Canada and every country take it as a boilerplate and pass it in your states and countries , because no person with Parkinson's should really have to pay for medicine . It's a disease that they didn't ask for and I feel that that's what we just started a section , if we get to , called PWP , it's people with Parkinson's .
Speaker 2On my website on Together for Sharing , and what it is is , I just list people who have Parkinson's but they have some incredible traits or things Like one's an artist , one makes t-shirts for Parkinson's , one just can't afford the medicine , so we put them all up there with their website . I have nothing to do with it and I'm hoping people will help fundraise for them directly , because all the big organizations are great , a lot of times the little people don't really see that . So anyway , I'm always really innovating , trying to think of ways to help people , and we don't accept a penny , like I said , for any of that . It's just up there to answer your question . Can you repeat it ? Sorry ?
Speaker 1That's okay . Yeah , I just said like it feels like it's almost sneaky , like it kind of comes up out of nowhere and in my dad's case , because PSP is very aggressive , it was really fast yeah .
Speaker 2All right , so much I want to talk about . I don't have the time for everything , but to answer that I agree , like I mentioned earlier , my mother had Parkinson's for 15 years . She had towards the seventh year she had stiff , like her arm was stiff , so she had a lot of trouble but she still was able to live independently , drive shop , have friends shop , do clothing everything like a regular person . Do you know clothing everything like a regular person ? But the last four years it felt like it came out of nowhere because we were told so many times that you don't die of Parkinson's , you die with it .
Speaker 2So my mother was a young , 69 years old and she had no other medical issues at all , nothing . So all of a sudden we decided because all the doctors you know they tried . I don't blame doctors or anything , because it's not their fault , it's a disease but they went to a special university for a trial . The same night she came back I don't know if they drastically changed her medication , but she was never the same . I got a call to rush over to her house at 4 am and she was moving her furniture out in fear the Nazis were inside and they were going to harm her . I rushed her to the hospital and they said she could have died .
Speaker 2She had some kind of a like attack or something was horrible and you know , no matter what field you're in or class you take , you're never going to be prepared for that , to see your loved one , and that she was . Really it was a mess of anxiety . Anyway , I found out later she also had on late onset dementia , which now , not only with Parkinson's , you can have external tremors , like Mr Michael J Fox , and also some internal , and dystonia , which is the curling of the toes , a lot of rigidity , which is stiffness , but really the famous . I don't think it's famous , but the kind of some of the misconception is that it's like it's the moving disorder . You , literally , your brain , might say to move , but you're stuck like literally you can't . You're like the , you just can't move and that's what . And then some others , like my mother , it's uncontrollable shaking that she would just move and couldn't control , which was horrible .
Speaker 2So you take a beautiful , any one person , and you put this disease that destroys them , and she lost a sick amount of weight . All the medicines were destroying her gut and her stomach . She didn't sleep . We had to hire staff just to watch over her so she wouldn't fall , because I knew if she fell , you know . So all this , like you've asked , that came out of nowhere . It's like I said they . She was only 69 when she passed , but the four last four years were the toughest . So on top of parkinson's , then you have the dementia , which brought hallucinations , delusions , which is something that I can't even explain .
Speaker 2It was just horrible and I actually I can read like one chapter on page 70 . I just have one . It's on j June 11th . I documented the last year . You can really see how I felt .
Speaker 2At 8 am my mother calls very upset and cries that I shouldn't forget about her and take her out of her place and to my house . She believes people are harming her . I calmed her down but these calls are constant , repetitive and almost round the clock . She says that the nighttime aid is mean but likes the daytime aid . Yesterday she loved the nighttime aid but hated the daytime aid .
Speaker 2So you know , if you want to really be taken deep into it , you can read the book I've been doing really well , like I'm surprised because the hardest thing is with Parkinson's or PSP . People aren't aware . So if they're not aware they might not even know about the book . So my dream is really to get the book out in the world and I shouldn't say it and I keep saying it , but I don't care about the money because it's really more . I feel like it's more educational and so many people who could benefit from it .
Speaker 2Some people might not want to read it because you don't want to know . You know some people . Just , it's a beginning , a middle and end of life and for some people just want to ignore the end of life when you could plan for an attorney , power of attorney . You can plan for will . You can plan for so many important things housing that if you just wait that could destroy a family and become 10 times worse . But that's a different world to get into .
Speaker 2But again , to go back to your question , I mean it came out of nowhere . I wasn't prepared , I'm still not in shock , and one thing we mentioned earlier is the number one rule in caregiving is to take care of yourself first , so you're no good to your loved ones . And I didn't do that because I just didn't want my mother to feel uncomfortable for some reason . When I was by her side she was okay , like she was . I mean , she saw the you know disease , but she was , she felt safe . And now today it's an advocate . I'm still not following the golden rule because , like we said , if I let's say I'm not doing too well today , I'm kind of sick and I didn't want to miss this because I feel like , if we even reach this one person out there and then I wear a PSP and Parkinson's and then dementia , that we've changed the world . So you have to sacrifice some time time . But I'm struggling personally still today with how much .
Speaker 2And we went to New York the other day for one day , which was not an easy trip flying . I didn't sleep in the hotel at all , because I just don't sleep well in hotels , and it was . It's an incredible experience , but I stood for like six hours meeting people and lost my voice , got home , didn't feel too well and then went right back to work and you know you have to juggle things , but to me this is really like my life's work . I feel like there's a fire in my heart and I can't stop till we find a cure , because every time I hear somebody like you who lost a loved one or I mean mr michael j fox , I like when I met him a month or two ago , it was just us and I was in a special area with a lot of people , but I got to speak to him and he put the band we have , this band we give out , and he knew about my mother and it was like amazing .
Speaker 2But at the same time I went into the bathroom after I fell apart and I'm 62 , 200 pounds a law enforcement , but I saw my mother a little in him , but he's struggling and now he could barely walk . He was in a wheelchair recently and I hate seeing that , so that's what drives me to not give up . But then again I'm battling . I could probably write a book about that , but I'm tired of no more books .
Speaker 1It is important . I mean I will advocate for you for the self-care . I mean it really is important to just take pause , but I know when you have , like you said , a fire in your heart on a cause that is just so needed . I appreciate your drive . So thank you for doing that and thank you for spreading so much awareness around this . I'm very excited You've recently shared that there is a group in Canada , PSP Awareness , so I'd love for you to just talk a little bit on that before we sign off and we can let you go rest , because I know it is important You're actually helping me and your viewers and it means the world to me to have this time .
Speaker 2I hope this is really not just about a conversation that you know you do a show and you say goodbye and you part ways . This conversation does really have to continue until we find a cure , because until we do we still have a lot of work to do . So I don't have Parkinson's . We're not really sure how someone gets it and that's another podcast , but I feel pretty strongly . It's environment . My mother had a nice home but she had mold , she had termites . We had weird people spray . Who knows what they used back then . It's just frightening . That we even have pesticides in the supermarkets is frightening .
Speaker 2I found out after interviewing an expert in parkinson's , a professor , a doctor and professor . He said you can actually get parkinson's possibly from the cleaning . So when you dry , clean it because they're using horrible chemicals . So he was telling me this while I had chemicals on my jacket . I wanted to burn the jacket while we were speaking . That was interesting , but anyway . So I don't have parkinson's right now . We don't know future whatever , and I don't .
Speaker 2I'm not , unfortunately , a caregiver of someone alive with parkinson's and that kind of got me upset because I do feel sometime now you have the world , they've really opened their arms to me . But there are individuals and organizations that still , I feel , don't keep us in the conversation . And I say us because you know , unfortunately you lost your father , but you know it's like they concentrate which I agree on the cure and for people alive and their caregivers . But you know we have 10 million or more people who've lost loved ones due to these diseases . They don't have . They should have a whole wing . I'm writing a book on it now for people like us , because we still have a voice . My mother and your father still matters and I see a lack of , uh , something missing for people like that and I feel if you brought those millions of people , families back to keep their memories alive , what a force we would have , even 10 times stronger . But you know they just don't have the resources of time , I don't know . But so that leaves me in the world .
Speaker 2So I went to , I tried to find support groups because I do think it helps virtual . I went to some with people diagnosed . I didn't fit in so I didn't say anything . It was odd . Then I went to caregivers , but that was for people alive .
Speaker 2So again , I'm not going to share my journey and things because then they'll be all mad at me or upset , because I still hear people say to this day , like you know , even on stages they say you don't die , but you die with it . My mother maybe she didn't die from Parkinson's , she died from all the Parkinson's medicines or something , so it was because of Parkinson's . So anyway , I'm not a scientist , so I don't get into all that , but I could only speak on my journey . Also , there's no cure because everybody's so different , which is also a complicated thing . What happened to my mother ? She had late onset dementia . It doesn't mean someone else with Parkinson's will even get dementia .
Speaker 2So anyway , I found myself kind of grieving again , feeling like I didn't count , I didn't matter , and I just thought about , you know , starting my own thing and thankfully , a group in Canada which is near you , probably Laura , she was incredible , but it's called PSP Awareness and they're a group in Canada but they cover the world and we together decided why don't we start something ? So we started a support group . It's once a month for an hour . I think it's like the third Tuesday , but if you go to Together for Sharing . Click About Us .
Speaker 2The support group's right there . It's all free . It's confidential . But it's for anyone who's lost any loved one due to any disease so confidential . But it's for anyone who's lost any loved one due to any disease . So psp , parkinson's , dementia , alzheimer's everybody's welcome . Again , it's completely private , confidential . Luckily we've had a nice group
. I don't really want it to be too many people . If you don't have , if you have more than like few , then it's you don't get to talk . So it's just an amazing .
Speaker 2Last month I remember two people had lost a loved one due to PSP and one with Parkinson's , and as he was talking , my heart was shuddering because I'm like you're in the right place , you know , because we have a lot in common , unfortunately .
Speaker 2But it helps to talk about things and that's why I really enjoy these talks , because you know it still helps . Even looking at the cover sometimes , I found myself almost very sad , even though it was my one of my happiest moments in my life . That was the picture of my mother and I , and we were actually dancing at my wedding . So it was an incredible day because I finally got to marry my wife , who's my best friend now . She's been my support of the whole chapter from my wife and the book and my children and my mother used to love like sunday morning blowing bubbles in the backyard with the kids and I often walk by the backyard and don't see that anymore and it's you know , sorry , it stinks . I don't want to curse on your show , but I'm from brooklyn that's okay , I appreciate it , nothing we couldn't bleep out anyways .
Speaker 1But I know I and that feeling it does it . I , I don't know , with grief , if that feeling will ever go away .
Speaker 2I mean , it's to be determined , I guess the one thing is uh , parkinson's might take a love , one PSP , but it can never take the memories . And that was my favorite memory of my mother and I , because in that moment , even three minutes , parkinson's didn't exist . We joked , we talked , we laughed and we loved , and that symbolizes her life . And that's why this book is so important , beyond any selling things , because it'll keep her memory alive forever , beyond me , beyond my family . And I mean just today somebody incredible I don't even know why I did it , but he took a picture with the book and put it on LinkedIn and I just was scrolling and I see my mother . It was a great feeling . That was kind of worth it all for me , and I hope it goes viral and other people .
Speaker 2I encourage everyone out there , if you can get it , we have an audio book . I never dreamt of that . I hired a professional voice , not mine , because I don't want to hear myself . But you know it's an ebook , it's a hardcover , softcover , but just very important to be out there . And you know , I just think there's so much more in there that we just wouldn't have the time to get to .
Speaker 1Yeah , and that's okay . We'll make sure to include a link for the book in the show notes so that everybody who is wanting to get a copy that will be able to . One last question , because you kind of touched on this and we don't really know where Parkinson's or PSP comes from . But it's interesting to me that the focus is so on finding a cure when we don't even know where it starts In your research and your advocacy . Do you have any insight onto that ?
Speaker 2Yeah , I don't think it's genetic . I feel it is social , not just the surroundings , like the environment . So the water we drink , the dry clean , the food we eat , the pesticides bug spray , I mean there's a thing called Paraquai that was banned in China , the pesticides bug spray . There's a thing called Paraquai which was banned in China but not in the US . I'm not sure about Canada . That's poison . We need to get legislators , we need to get more involved .
Speaker 2The other problem is if you want to be very healthy , which you should , so diet is big , exercise 45 minutes a day , even if you don't have Parkinson's , you have to do that . We know these things are out there but we still , you know , do it , which is tough . Like you go , you got to get , you got to eat , so you go to the grocery and then when you talk about organic , which is the best , that's very expensive . Some people just can't afford it . So it's a society where we can do the things , but we still , some people , can't because of how things are regulated , because of the high costs . So all these things need to be changed . I don't know if they will or when . And then also there's a famous lawsuit called Camp Lejeune , where people from the military were getting Parkinson's and dementia because they believe the water and the contamination in the military camp .
Speaker 2So there's a lot of cases out there , but no one's . You know they're not doing enough about it . So we have to make ourselves aware , not just about the disease but about the surroundings or environment , the stress .
Speaker 1I mean I'm pretty sure there's a study out there now that is saying that more of first responders are predisposed to Parkinson's because of the high stress environment and so , yeah , I mean bringing this awareness . I appreciate this conversation so much . You guys make sure we'll put George's website in the show notes as well as a link to his book , so you guys will be able to find more information out . Spread the word . I mean it is still fairly raw for me losing my dad at the time of this recording just a couple months ago , and hearing your journey and hearing more of your story . I mean that loss , you know , we just don't know when that'll start to alleviate . Sorry , I'm getting a little choked up , so we will .
Speaker 2I don't . I usually end everything with this message but don't fall apart , please . This is for motivational , but if you don't mind , I want to just say this to you and the viewers but we love you , we support you , we care a lot about you and you're never alone . I will advocate for you and together I feel our voices are just so much stronger . And I always say I'm just getting started , because , meeting you now , while we're talking , all these amazing thoughts and things , now I'm ready to go out there and keep fighting for you , for your family and for everyone out there .
Speaker 2And you know , unfortunately , some days , like I said my , I'm having major spine surgery , a third one next month , but I guarantee from the bed I'll still be fighting for parkinson's awareness because , uh , no matter what I have or pain , it's nothing compared to what the people I've now consider my family , like you , are going through , and I don't want others to . So we gotta again keep working together because our voices together just so much stronger we might . You know I'm only one son . One person lost his best friend , mother . Look what I can do and if we join to you , with you , like 10 other people in your audience , oh my gosh . We could crush these diseases and them forever and maybe talk about something else , like the weather outside . So until then , we have to keep fighting and I'm going to be right out there by everyone's side until we end this . So again , I'm so grateful for your time and we send our love to you and your family and , like I said , I'll never let your father be forgotten too .
Speaker 1I appreciate that , George . I'm very grateful that we were able to be connected and that you were here and thank you so much for that lovely closing message . And thank you , guys , for tuning into today's episode where we help you conquer the chaos , one day at a time .