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180. Advocacy for Parkinson’s Awareness and Caregivers with George Ackerman
81 Plays22 days ago
Dr. George Ackerman (Sharon’s son) is from Brooklyn, N.Y. Now residing in Florida, he works in the fields of law, police, and education. George lost his mother, Sharon Riff Ackerman on 1/1/2020 due to Parkinson’s Disease.
George wanted to honor his mother and continue to help in the Parkinson’s awareness cause and did not know how to bring change. We started TogetherForSharon® as a family for the purpose of keeping my mother, Sharon Riff Ackerman’s, memory alive and to share the message of Parkinson’s Awareness and hope for a cure.
Today https://www.togetherforsharon.com/ reaches thousands of individuals across the country for PD Awareness. George currently interviews individuals throughout the Parkinson’s community including various foundations, caregivers, and Parkinson’s warriors to help share their stories and causes.
"I am on a mission, and nothing will ever stop me until there is a PD Cure.... nothing. Join me, share and we are a family in this mission toward a cure, always! " https://www.togetherforsharon.com/about-us/#mission
Author, A Son’s Journey from Parkinson’s Disease Caregiver to Advocate. To order your copy click https://a.co/d/gqUwKJX
Website https://www.togetherforsharon.com/
Email [email protected]
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Transcript
Introduction to Shared Stories of Grief and Hope
00:00:01
Speaker
The cover of the book is actually me and my mother dancing at my wedding. And I always say, besides having our children three children, that was one of my favorite days in my life, like honestly, because it was just, ah in those few moments of me and my mother and I dancing, the whole world froze. We laughed and talked and joked, and we're both too so happy, and Parkinson's disease didn't exist at that moment. And you know even talking about the other day, I was kind of falling apart. I'm 6' 2", 200 pounds, law enforcement, and it's tough to still talk about.
00:00:41
Speaker
This podcast is about exploring the grief that occurs at different times in our lives in which we have had major changes and
00:00:58
Speaker
I created this podcast for people to feel a little less hopeless and alone in their own grief process as they hear the stories of others who have had similar
00:01:19
Speaker
Today, I am chatting with Dr. George Ackerman, also known as Sharon's son. He is from Brooklyn, New York, and now residing in Florida. Today, our conversation will be mainly about the roles as caregiver of someone with a terminal illness. In his
George's Caregiving Journey
00:01:39
Speaker
case, his mom who died of Parkinson's. So welcome, George.
00:01:45
Speaker
Thank you for your time and your audience. It means the world to me and my family. And I really ah was excited to talk to you because a lot of your show concentrates on an area I think we need a lot more in the world of. And that's the, unfortunately, in my book, the chapter is called The Aftermath. And that's ah where I am today, even though I'm advocating in memory of my mother for Parkinson's Awareness and hope for a cure. I still, unfortunately, miss her each and every day. So again, I'm really honored to be with you today. Thank you.
00:02:15
Speaker
Yes, the aftermath of grief, that part of sometimes like people think ah grief is just in that moment when you go to the funeral and so forth. But here we are four years later after your mom died. And there's still, of course, a lot of grief that still shows up because grief it doesn't necessarily end depending on what we're grieving for. It just transforms through time. So let's chat about you. Tell us about your upbringing and your role your role as a child of your mom, Sharon, and and your family dynamics a bit, please. Thank you. My mother is my best friend. So part of when she passed, part of her I feel, you know, passed me and myself. My mother was very selfless and encouraging and very
00:03:07
Speaker
reliable. She was always there. The first person I called for the good, the bad, and the ugly, and she would never found me. She was always like literally right there anytime I need anything. And I always thought of her as like a mentor. She was raised herself in a lower kind of class, didn't have a lot of money, and they struggled throughout their life and kept fighting to just give their own family ah you know opportunities. And we were from originally Brooklyn, New York.
00:03:36
Speaker
and she was a single mother, raised me and my brother and I don't think I would be the man I am today or even the advocate if it wasn't for my mother because she sacrificed so much so I could be you know again achieve success today. She gave she was a school teacher for children and actually had a master's degree and really just kind of gave it up to raise me and my brother so you know She was always encouraging. She was right by my side, whether it was through my law school graduation career, my police career, and my PhD in the field of criminal justice. and She always taught me to help others. i've
00:04:15
Speaker
been honored to fight for family members who lost their loved ones due to murder in West Palm Beach, Florida, and really victims of family members of victims throughout the world. They just, sadly, are often forgotten by the criminal justice system, and that kind of correlates to what I do today in advocating for the Parkinson's community, because unfortunately, I feel, and you can see the statistics, that they're forgotten and by even the government, politics, and legislature. Thankfully, while we're speaking live,
00:04:45
Speaker
Last December was the first bill in U.S. history to pass the House of Representatives. That was called the National Plan to End Parkinson's Disease. So, as we're speaking, it's an honor to say that we're literally going through history. And I'm hoping next year or the year after the first legislation will be signed into law to help aid individuals diagnosed and caregivers and for the future to diagnose people properly early and give people the ability to kind of reduce the symptoms, not cure it yet, but at least reduce them. The support that is needed when when people are going through an illness like this that completely shifts the life not only of the individual that is going through it, but the families because a lot of times
00:05:32
Speaker
the the families become the caregivers, which was the case in your case. And that shifts also your role as being able to work. You have to kind of juggle it all. So it affects everybody. Therefore, not only emotionally, but also social economically when someone is dealing with an an illness that requires ah attention and care. So tell us about your, before we dive more into that, about your ah your family, your wife, your little, your nucleus, and then I'll ask more regarding you your mother. So I want to know more about you, George.
Advocacy and Legislation Efforts
00:06:16
Speaker
Thanks. I mean, a lot of time, unfortunately, in these shows, I don't get to talk about me because it's all about my mother, but I'm glad we have an opportunity. That's why I wrote my book. It's just a journey of my experiences, a memory of my mother from Parkinson's disease. Yeah, say the title.
00:06:31
Speaker
Sure, it's called a son's journey from Parkinson's disease caregiver to advocate in memory of my mother, Sharon. But actually I dive a lot more into caregiving. Some of the chapters are my primary caregiving support for my wife and children and trying to find good aides because unfortunately I needed some support also for my mother. A little bit about me again. I mean, I've been in of the field of I'm an attorney in Florida and Washington, D.C.
00:06:59
Speaker
federal in Florida and also a police officer reserve. I have done policing since 2006, completely free. So it's actually voluntary. And if I had pull you over, which I know you never pulled over because you're a law buddy. Oh yes, yes, yes. Sir, I always go the speed limit officer. You're over by me. You wouldn't notice a different set of my reserve. But that was one aspect my mother didn't like because I put my life on the line for others, completely free, voluntary, which is very dangerous. But again, I always felt that I wanted to make a dent in society and try and make
00:07:36
Speaker
even my community better and I felt volunteering in that drastic way in law enforcement was important and then I fell in love with education and I'm a professor now but I really lived through my students and ironically I received an email today from a school in Texas, Texas A and&M And a student has actually asked me to do the honor of putting the hood on them for their graduation, which is, ah unfortunately, I'm in Florida, so I can't make it. I'm having my own back surgery next month, so I have things, but that's ah that's the reason I love doing that. we look you know I'm inspired every day by the students and by individuals, unfortunately, you know still fighting for Parkinson's. So a lot of my life, in my opinion,
00:08:18
Speaker
might sound spread out but it all does come back together and there's a reason again my ah heart and soul and passion is in advocacy today fighting for people who I've now become like family who are still diagnosed and showing the signs and struggling and for their families I don't want anyone to ever go through what we did and I think by meeting you and reaching out to your audience and advocating and reaching people who do not have Parkinson's, the people who are not caregivers is very important if we're ever going to end this disease.
00:08:53
Speaker
Thank you for for sharing about your background and your career and what you do and what you're passionate about and your advocacy. If you don't mind also sharing about your, you were mentioning that your wife has Cuban background. can you You and your wife have ah done podcasts as well on your website together for Sharon. So tell us about year you're your your wife and how it is that you guys now also use that platform of interviewing people as well as sharing for your own even grief process as a way of mourning and at the at the same time of awareness and also honoring your mom.
Balancing Advocacy and Family Life
00:09:34
Speaker
I really feel even talking to you today helps me grieve because it's just nice to be able to share her memory and now even if we reach one person out there now is aware of not just my mother but Parkinson's we've changed the world for the better. Some of the important things is my wife luckily went the day it's Even in the book, the day my wife and my mother met, ah they fell in love too and they were best friends. So that was incredible because during some of the toughest times my mother had, the last four years, her health deteriorated drastically. She at times was ashamed to even go outside because she yeah got so skinny that my wife went above and beyond and tried to bring in a manicure person, a pedicure or a hair person. And some days it was too tough because she was sick, but you know just for those small moments,
00:10:19
Speaker
We wanted my mother to feel like a person again and I always say Parkinson's disease doesn't define you but unfortunately it can you know harm you but we have to always keep the good memories. Another thing is the the cover of the book is actually me and my mother dancing at my wedding and I always say besides having our children three children that was one of my favorite days in my life like honestly because It was just ah in those few moments of me and my mother and I dancing, the whole world froze. We laughed and talked and joked, and we're both just so happy, and Parkinson's disease didn't exist at that moment. And you know even talking about the other day, I was kind of falling apart. I'm 6' 2", 200 pounds, law enforcement. And it's tough to still talk about because that picture, you know, I can't have that again. So that's why, again, I think we I even need to show like that grief. I think I just rather do it with someone like you because it's more interesting. But I think grief is something that unfortunately a lot of people don't want to talk about. Someone said we have a beginning, middle and end of life, but no one ever wants to talk about the end.
00:11:21
Speaker
And I think it's important to tackle tough topics so we can find good resolution to be prepared. I was also lucky that my mother was so like an angel because she we prepared her will. I was a power of attorney. She went to the banking. She had her funerals. Everything was done. And one thing I want to touch on, you mentioned earlier that see the problem in Florida and most states is Parkinson's disease is still not an end-of-life disease, which is shocking because my mother had no other medical issues. She passed at the young age of 69. Thankfully, they just started a program a few years ago, which was a year-long hospice, and that's not normal. Usually, it's just a weekend or a month. My mother, unfortunately, was in a whole... The last year of her life was end-of-life care.
00:12:06
Speaker
And that was a you know constant struggle. And it wasn't just Parkinson's at the end. She had late onset dementia, which brought hallucinations and delusions. And back to my wife, I don't think I would have made it through the process or even today without her and my children.
00:12:21
Speaker
because even though some days we didn't see each other because I was helping my mother, I knew that everything at home was still okay and she would have my support. A week ago, we still even now have some talks so serious talks that I'm doing too much for advocacy, but in my some nights I don't sleep.
00:12:37
Speaker
because I miss my mother, but I don't want anyone again to ever have to go through this. And I feel if I don't do that one more show or we don't, you know, do one more video or go to one more event, I might be missing one person that we could have really changed. But the one downfall of my caregiving and write about in the book and even my advocacy, which I don't follow, is you have to take care of your health your own health first. I was just going to say that. yeah I don't do that. And I'm proud of it. and and I have no regrets. If I had a shirt that said something, the quote would be no regrets. Because I don't think if I had to do it again, I could have done anything differently. And we don't have a cure still, which is the toughest part.
00:13:17
Speaker
hu Yeah, it's hard to know like when to have like this balance as well and as your wife was mentioning of the how much do you do towards advocacy and at the same time still having that time with your children, with your wife, you know, and all of those things. It's hard when you have this mission and especially when you know that you're you're doing it not just for yourself, really you're doing it for others of helping and impacting others. You mentioned something in the conversation right now regarding being able to express and and your grief and the part of you being in the role that you are as an officer, the the you know this macho maybe mentality or or viewpoint we may have of an individual, how has vulnerability
00:14:07
Speaker
played a part for you now as you grieved and while you were actually as a caregiver and how different was that part for you then prior did you feel you had to tap more into the part of being vulnerable and asking for help more after your mom's diagnosis and her passing than who you were before.
00:14:29
Speaker
I was shocked when I was asked a few weeks ago, and it was a year of process, but to ask me to speak at a summit. And I was shocked because the the topic was male caregivers. and And in my brain, I didn't even realize that there's not really many male caregivers speaking out. And I'm like, I consider myself a momma's boy. I loved it. My mother, again, was my best friend, always will be.
00:14:50
Speaker
And I was proud of that. So vulnerability, I think is important. I don't mind. I'm very honest. If you see somehow I'm on every social media. I just put a video right before we met thanking you actually about, you know, getting being able to speak about grief and um Some days ah the videos are sad, some days they're happy, so I'm very honest and I don't want to hide anything. I even say a hundred times that if you go to togetherfasharn.com, our website, we do not accept money, we don't want anything. Literally, which is so crazy today in 2024, I have to tell people that, but we literally just want people to know they're never alone. like That's literally my only message. that
00:15:29
Speaker
You might be alone physically and fighting, but there's someone like me out there who sends our love and support. So the vulnerability to me again is very important. I don't think I had time to think about all that during caregiving because I was thrown into it. I never knew I was going to be a caregiver and you can't plan for it even if you took a course. Unfortunately, my mother had Parkinson's for 15 years. She was able to live a regular independent life.
00:15:55
Speaker
She had like stiffness in her left arm, so she had some trouble, but I think a part of it was she was didn't want to burden the family. I heard the word Parkinson, but I don't know what it was until the last four years when she went to a special trial at a university. And again, I don't blame the school or the doctors. I blame the disease, but she came home that night and I don't know if they drastically changed her medicines, but I had a call from my father in New York to rush over to my mother's house at 4 a.m.
00:16:22
Speaker
and I found her moving her furniture out of her house and she told me she was in fear that Nazis were inside and they were going to harm her. but That's the night I discovered about possibly dementia, hallucinations and delusions and I knew I had to do something more and I was going to have a big job at hand and it wasn't even Parkinson's.
Inclusion of Bereaved Families in Advocacy
00:16:41
Speaker
It was even that we didn't have end-of-life type laws in Florida. I tried everything. We even tried licensed medical marijuana, which was a disaster because they the distilleries don't speak to the doctors. Plus, I'm a cop, so I didn't want to do any of that. but I didn't want my mother in pain. But anyway, we tried everything. and So I still think I'm vulnerable today, but I think you have to be because you can't be honest. and
00:17:05
Speaker
Like I said before we met, um I don't have scripts even like you don't, we just talk because everything's really from the heart and there's no intent because I don't want anything in return except the cure for Parkinson's. What would that mean for you? would like Do you feel that By you being an advocate and finding a cure, is that part of your mourning process? Do you feel that that goal and that drive to get to that resolve is something that's going to help your mourning process and your grief?
00:17:39
Speaker
I think it will for knowing the other people out there. It won't help, obviously, because my it's too late for my mother. But I think I do want to stop all this eventually. I'd love to keep my mother's name, obviously, memory alive. Something I just started. on My website, you know, I don't have Parkinson's.
00:17:57
Speaker
I could still get it in anyone. We don't know why people get it yet. We think it could be environment if we have time. I can talk, but so I don't have Parkinson's. I'm sadly no longer a caregiver of someone alive with Parkinson's. And I actually wrote another book, which I'm going to wait a year or so. It's a little more controversial than my first book wasn't. My first one was dedicated memory of my mother, but to everyone diagnosed and caregivers today.
00:18:20
Speaker
But my second book is likely going to be called The Seat at the Table because we no longer have a seat at my table because of Parkinson's for my mother. And i i know't and i'm not I'm a caregiver, but no longer someone who is alive. And I still find, even today, the big organizations, I don't name them, but a lot of groups and people still, I feel, I'm left out of the table and the conversation.
00:18:42
Speaker
And I don't agree with that because I think my mother still matters and my voice still counts. And if we went back and got all the millions and millions of families who lost their loved ones due to Parkinson's and we had a wing for them like literally and had more light and attention, I think that this would be incredible because all those people would still be helping and be back.
00:19:03
Speaker
I think a lot of the time people lose a loved one, whether it's Parkinson's or anything, they grieve and then they move on, but it's not like they forget that they move on because there is nothing out there for them. Like they don't really have any, you know, so that's a big area that I'm trying to work on. We just started a section called In Memory on Together for Sure and Completely Free again. And if you click on it, there's a candle lit.
00:19:27
Speaker
and it moves, and then under it are journeys. And I only have a few because it's hard to find the family members to come back, but it's some journeys of people who are sharing their loved one's memory. I interviewed them to never forget. Also, people like Janet Reno, who used to be the attorney general I met her years ago, and she passed due to Parkinson.
00:19:47
Speaker
And it' it's been taken off. I don't know how. I felt we'd have like six people see my website. but There's a little counter it tells you and we've had over 35,000 in the last few years. So it's just, I don't know if it's growing because of my work or that the disease is the fastest growing neurological disease in the world. One million people approximately in the US and 10 million around the world.
00:20:08
Speaker
And I even have interviewed people from Colombia, from Spain, from France, Italy, Nova Scotia, and even Iceland, which are shocked. That just shows that Parkinson doesn't discriminate. It couldn't go anywhere.
00:20:22
Speaker
It's like one of those things that it's, it's like you don't know if having that amount of viewership is a good thing on your website or a bad thing, right? Because you're like, Oh my gosh, that awareness like 235,000 people at least have been impacted that have been driven to this.
00:20:39
Speaker
page and that's like huge, you know, it's huge to to to see that. And that's just the ones that know about it. So let's talk about Parkinson's before we go. Tell us if your mom was diagnosed 15 years prior to her passing. Tell us more about the disease itself and at how how far into her diagnosis that that she already started needing someone with her to be caring for her. She didn't really need anyone until the last four years when I took over in a way but she you know she lived alone so she was able to pay her bills and have friends and eat up for dinner a lot and always running she had a car and drove it.
00:21:23
Speaker
Florida you have to and then uh so a lot of so she had the stiffness in the left arm but again she didn't tell us a lot so I don't know you know unfortunately if we had if she was back here I actually had a question the other day and if I could have ever changed something I would have had a podcast with my mother but before Parkinson's because I would have loved to have shared all this now we have you know we've done our own my wife only comes down once a month because we're busy with the kids but I have That's the Together for Sharon podcast where we interview people who are Parkinson's and advocates. and Then I have, I started the Q and&A with Sharon's son where I literally just interview people and I do a lot of those. I've actually just interviewed United States Senator Rick Scott, which was an honor to get a United States Senator who they don't you know have time, but to show that he cares about people with Parkinson's means the world. and that so i've had and Michael J. Fox Foundation has been on and actually met Michael J. Fox a few months ago and
00:22:19
Speaker
We're going to New York to the Unity Walk, so that'll be a great opportunity at the American Parkinson's Disease Association symposium. But ah back to your question, if you could repeat it. ah In terms of what, how did your mom find out? first off that she had, what were some of the signs that led her to find out she had Parkinson's? Let me do it in bite sized pieces ah because I end up um asking super broad
Exploring Parkinson's Origins and Diagnosis Challenges
00:22:44
Speaker
questions. people So what, how did she find out she had it? And then as you said, like the first symptom was like the step el elbow, but how did she find out she had Parkinson's and how does Parkinson's affect the individual for those of us that might not know as much since it's, since you were wanting to talk about the disease and awareness about it too. yeah The reason there's no cure right now is that no one knows the exact origins, but we do think it could, we don't think it's genetic, it could be environmental. So even dry cleaning, I learned, could be a problem. The toxics, you know, toxins, the environment like pesticides, the fruit weed, and water. Like, Camp Lejeune is a famous lawsuit going on through to the military.
00:23:26
Speaker
And also, ah so my mother lived in a nice home for 20 years, but she had mold and termite, so who knows what they sprayed. And that's what I, honestly, 100%, even though I'm not a medical doctor, ah believe it's from the environment. And I've spoken with experts in the field recently, like Dr. Ray Dorsey, who actually believes that it could it can't It's not that it's going to be cured or it can be cured, but he thinks it could be prevented, which is an interesting point. He gets a lot of, I guess, some grief from that because it's not always, ah you know, that's not easy to show. And there are people who always look at both sides. But I am a big believer of that my mother had signs, but she didn't, again, tell our family. And my father happened to be an orthopedic surgeon in New York.
00:24:09
Speaker
that he worked with her closely and he diagnosed that he says but another problem is because Parkinson's is so different to everyone it doesn't mean what happened to my mother will happen to the next person. Everybody's again very different. As you know, Mr. Michael J. Fox, the famous actor, he had young onset Parkinson's and and around age of the year 30s, in his 30s. And he has external tremors, so it's uncontrollable shaking. My mother did have that towards the end, but most of her, seven years before I helped her, she had more internal, but she had something called dyskinesia and dystonia. There was a curling of the toes, stiffness. Unfortunately, sometimes the individual feel like they're frozen. So they let's imagine we're walking, and they just can't. They're just literally, their brain is saying to walk, but their body can't.
00:24:58
Speaker
So those are some of the unfortunate signs, but again, there's actually no test right now that can tell you if you have Parkinson's. So if you go to the doctor, I recommend to see you know a movement specialist, but they can't they do test for other diseases and other illnesses, and when they rule that out, they say you have Parkinson's. So unfortunately, still today, that's not the most accurate method, and people are being misdiagnosed or late diagnosis, and that's a big problem.
00:25:24
Speaker
Thankfully last year they did but have a breakthrough in technology and it's called the biomarker which I wouldn't do even though I'm already having spine s surgery which is horrible enough but they have a needle they can put in the spine and it can determine I believe don't quote me on it that if you have Parkinson's or not that'll change the world but now what they're trying to do is take that needle and put into a basic little blood test so you can get in every doctor's office around the world and that would be important because now we know exercise 45 minutes a day can slow the progression diet you know food environment so if we know we have someone knows that have it they can try and do some of these things earlier but if you're too late like I think our family was and you can see unfortunately
00:26:08
Speaker
what Parkinson's can do and I don't know if it's with the disease that took her I don't know if it was the medicine but you know just so many medicine when she passed we had talk about grieving it's in my brain haunts me every day that we had five huge garbage bags like the contractor bags that are heavy duty of medicines that we threw out and I can't imagine even if it helps slower down the tremors and things that that's gonna help your stomach or your you know life living Hmm. Yeah, I know what you you mentioned several people and at and people that have been advocates. You mentioned Michael J. Fox and how early on, you know, his his tremors started and how he i hit it for so long. Right. ah in the I watched his biography, the movie still ah ah still. Right. Was that on Apple? I forget which.
00:27:03
Speaker
What was it an apple forget an apple? or item Yes, it it really it really does ah Help to have that perspective because it creates an empathy also when we know that Regarding our our health and how we take care of ourselves not only our Would it help to know if maybe we have a, you know, a prognosis of something that may come, but just the fact of just being advocates for our health, working out, like you said, taking care of our body, regardless of whether we have something genetically maybe predisposed is so important. So important. I i tell my children, I was talking to their teenagers, but how old are yours? What ages are your children? Your three kids?
00:27:58
Speaker
11, 10, and 7. No, I have three, but after you have the second, you forget all the birthdays. 11, 10, and 7.
00:28:10
Speaker
yeah Oh, okay. So your two oldest are like mine are or also a year apart. My two kids, my two oldest. Your two oldest are like my two. the ah I was talking about the compound effect, you know, and in ah in just even investments, right? Like the compound effect that it has when you invest in compound interest and all that. And I was sharing about a book that I was listening regarding the compound effect and even just the part of health, how the little choices that we make Yeah, it may not show up in a year, but how it could show up 10 years from now, the choices we're making now towards our health. So in your in your household, how how has that even impacted the way that you guys
00:28:58
Speaker
live and care for each other. You were talking about not maybe doing enough self-care for yourself, not sleeping at night. George, you need to sleep well too because you have to rest and self-care is so important too. So how do you take care of your own health and then your family also take care of your health? Like what have you noticed that you guys do maybe differently or that you've always done?
00:29:28
Speaker
Unfortunately, I'm an addict to work, so you on I don't think I have a job. I think it's, again, a passion. though I don't really consider work teaching, so I love my students, and i I feel like at some point I'm kind of not old, but I'm done with my career a little bit. and I live through the students so I love that because now I see them a achieve success and it makes me feel like I had a little bit of part of it and I don't teach I teach it's not just about a course, it's about changing the world and your own community so those are my big beliefs but
00:30:00
Speaker
At home, it's hard because we actually moved. My mother had that house. It was nice, but it was falling apart. and Again, I think that's how she got Parkinson's or why. and we moved out We bought our brand new home, which I couldn't do earlier in my life, but I'm so proud. and we had It was only a community over, and we thought it'd be great because she'd be close so I could rush over. and So we got her there. I remember the picture and we took video of her walking and she was in heaven because it was a beautiful brand of sparkling one, you know, floor house like her own with a beautiful backyard and the lake. And I thought she'd have at least 10 years to, you know, see blow bubbles in the backyard, which she loves to do on Sundays with the children.
00:30:36
Speaker
And her favorite time, even though the kids were younger, their screaming was once their children. And we actually put a room in for the kids. We called the playroom and they were allowed to destroy it with toys because we were really neat, you know, with the rest of the place. But unfortunately, that's, you know, the last year was when she went down bad. And we actually decided to sell that house and buy it where I am now. This house is like a bigger one, but it had a room and it was supposed to be my mother's room. So even saying this is not easy and that's why I'm here for the grief part of the show but every day I walk by that room I think of my mother and I wish she ah you know had that chance to be with us but then the other it's like having two people on my shoulder and the one and saying you know you won't selfishly want her here
00:31:17
Speaker
the other one saying that she was through going through like literal hell with the pain and the suffering and I don't even know there were some points in the book if you the viewer looks or read I go literally I kept the journal the last year of her life and that was how I coped a little bit with it I never shared it with anyone. I took video and pictures. I won't share those because I don't want her to be remembered like that, but the journal helped me. and i know I'm not a journaling person, but I wrote literally the date and a few words every day for the last year of how I felt and the hell, the the good, the bad, and the tougher time.
Emotional and Financial Struggles in Caregiving
00:31:51
Speaker
There were days I wanted to give up. I swore to her I'd never put her in a home, which we didn't. But this all comes back to what we're talking about. If she was in my house, I don't think I could have physically handled it because ah ah I think the Parkinson's was bad enough that the hallucinations and delusions were torturous for everyone.
00:32:08
Speaker
died and I'm not trained for that. I don't think anyone is even the doctors and nurses who came, but she thought so we had to hire people. I call i guess you call them aides. They weren't really caregivers. They didn't even know what Parkinson's was, but I needed someone to make sure she didn't fall. I knew if she fell, that would have been the end of everything.
00:32:25
Speaker
And so for like four years we had to struggle and I spent $12,000 a month just to find people to watch her 24-7 because she didn't sleep. she was ah Her stomach was destroyed from all this medicine. We had to have horrible things that we won't even get into today. but Like, oh, then I'm a male caregiver, so I couldn't, I didn't want to go in the bathroom. I had to put video cameras in her house, not in the the private places, but because she would call me 24-7, telling me that the aides are harming her and they're hateful and this and that, which wasn't true.
00:32:57
Speaker
because I was able to see it, but I had to comfort her. and But my own mind at the time, not just grieving while she was alive, was seeing you know my mother, her loved one, deteriorating. And the last year was something that I could only put in a book, because that's how hard it was. And I even say sometimes, because I'm not looking to sell anything, but you might want to skip that one chapter, it's called The Final Week, because She went from being someone who could walk for like several miles to the last four years to the last two. She had a cane, then the cane to the walker, then the walker to the wheelchair, and the wheelchair at to bed bound. But the bed bound, none of this is planned or known because they said Parkinson's again, you don't die from. So we were to this day still in shock. And she returned to me and said, I want to be at Brooke, which is her granddaughter.
00:33:43
Speaker
I want to be at her wedding and I'm going to keep fighting, but and there's only so much you can fight. And also, and it was just a tough, but the last seven days was something I, the first time I'm even talking about it, it's in the book, but there she was just laying there and didn't have a life. Like she didn't speak, she just laid there and we just waited for her to pass. I never spoke about really, but I don't know anything worse that could even be torturous. We didn't know if she was in pain or not.
00:34:10
Speaker
She didn't have life, but her heart moved. So for seven days, we had the family keep coming. And just imagine you don't know what's going to happen when. they Meanwhile, Florida is not an end-of-life situation. So it was definitely a journey, a tough one. I wrote about it. I didn't think I was going to put a book out about it. I just wanted my mother again to be remembered. and So I'm glad it's out there, but it's definitely ah tough stuff. What I do today means a lot to me, and I continue to agree, but shows like yours who become a family, because this is not just a show. To me, this is about life, and so many people are literally waiting on us, our show, and looking for a hope and to grieve too, and not just the people diagnosed, but the loved ones.
00:34:57
Speaker
And ah again, I don't have Parkinson's, I'm not currently a caregiver. So I felt ah alone still, ill be even after three years, because again, there's not really much out. I went to one group, but there was for people with Parkinson's, I didn't fit in. And then I went to a group of people caregiving alive and I'm like,
00:35:13
Speaker
I can't tell them these stories that we're talking about because I don't want to hear it. The good thing is I have ability, because I speak a lot, to just talk about the good stuff, but they don't even sometimes offer that to me, a lot of these bigger things, the organization. So it's just sad. So I decided to you know make my own way, and my own outlet, and my own website become almost like a TV channel now.
00:35:34
Speaker
And I've interviewed 600 people around the world. It's all up there for free. I've had people write me. and This is what how it helps me grieve. But I've had people write me and say, I spent 10 hours on your site reading you know interviews and I want to thank you. And I told them, that's great, but don't spend 10 hours. and i just that that they They love them because they feel they're not alone.
00:35:54
Speaker
And then we, ah the last thing is we actually, I was approached by a group in Canada, and they actually, it's called ah PSP Awareness, and we had it yesterday. Once a month for completely free, we have a support group for people like me now, and it's amazing. It's for anyone who lost a loved one due to any disease and can sign up. If you go together for sharing, click about, you'll see support group. groups and everything's free. No, I'm not recorded, confidential, but yesterday we actually had one and four people to join. We don't want a huge group because you can't get to talk, but one gentleman was, ah he lost his mother due to Parkinson's and second he said that like my heart stopped and said I can help him, at least tell him he's not alone. So that's what helps me today.
00:36:37
Speaker
you You touched on a lot of things and in in sharing that, and the part of one of them is the aspect of community while you're grieving and the importance of that. And if you can't find community, in your case, you went ahead and created your you know you created a space and community because you can find a place that you fit in. so that That is huge. The other thing you talked about, the fact that you wrote every day you know wow while your mom was ill, was one of your tools of grieving. So let's talk about those tools. What tools you've created. you Advocacy is ah an an outwardly expression of your morning as well as advocacy. you're You're writing, you have the podcast. Tell us more about these tools that have helped you navigate grief.
00:37:30
Speaker
as well as incorporating maybe your, but and let's just go there and then I'll ask the another question regarding that.
00:37:40
Speaker
Yeah, I mean I
Global Impact and Resources for Parkinson's Advocacy
00:37:41
Speaker
started to together for Sharon.com just because I wanted my mother to be remembered. I feel again that Parkinson doesn't define you and it can't take ah the memories away. So I thought a few people would see it and then we kind of had it up there for two years. I didn't do podcasts. I took one or two. I didn't really know that there were out there and it's become bigger today, which is great because you all everyone has a voice now.
00:38:02
Speaker
but so Then, two years ago, I discovered, and I was shocked that there are 10 million people around the world that have Parkinson's. To me, and I was in this little bubble, US, of course, but I was shocked. so I just decided it's not about my mother and me only anymore. It's about everybody and our family in this fight. so That's when I decided Why not interview you know people around the world? and It wasn't easy because some people, again, unfortunately, they think you want something you know like Shark Tank. where But wait, there's more. you know like I'll do this, but you have to pay. that That's not how it works. It was literally free. Finally, people started catching on. It was an incredible experience because now I've met people around the world and we're Basically like family and friends and they share the article and this and every day it's just being shared around the world and together for Sharon I mean I go places and people actually coming up to me and saying that they heard of me Which is crazy because ah you know, I go by Sharon Sun drawers like Madonna has the one name I only do that because it is all about, in my opinion, my mother or anything I do is in memory of my mother. That was an incredible thing, but then it shifted to now we have a section called PWP. It's People with Parkinson's. and I just started this a few months ago. and i Again, we have a donation link. None of it's my stuff. It's actually a link that was created by different organizations in memory of my mother.
00:39:22
Speaker
So if somebody wanted to donate to the cause, they would they would go to my website, click donation. They have choices of different organizations. And let's say you click on Michael J. Fox, you can donate even a dollar and it goes to them. So I have nothing to do with it, but they'll know it's in memory of my mother. but So I love what they all do, all the organizations.
00:39:40
Speaker
But I still feel sometimes the little guy and girl don't get get anything from that. You know, they're trying to help the world, which is good. But what about the one little person to me? Not a little, but like me, but I don't have PG. So we started, people with Parkinson's, it's a section, and i all I do is ask for anyone listening who has Parkinson's, send me a little two sentences and your website. And what I did is I put them all on the website, our website free, and it helps promote the people. So let's say there's an artist with Parkinson's or a friend I've become with a very close, he made t-shirts for Parkinson's and now his website's online. Click there, you can order things and it'll actually fund his own medications and things. And those are the kind of things I really want to get bigger
00:40:24
Speaker
We don't want to become a foundation because that's not really what my intent is. ah Maybe someday we might have to because again that segment of the population who lost loved ones are forgotten in my opinion and I would make a whole world for them which we have done on the website. but So that's together for Sharon. We somehow got into podcasting because I again I wanted to to hear from more people that I don't think have a voice.
00:40:47
Speaker
and so if you go there you can click podcast you'll see my wife and I's podcast my podcast alone and then our podcast today will be on there and all the ones I've done and it's just you know it's almost like a living thing now it's on its own and then the book has just come out and that's on there and just incredible things happening but to get back you know unfortunately there's some days i feel like a truck drove over me because i'll do like 10 shows and it's great but you know i don't get paid for any of this like you you know it's all volunteer and sometimes my own work suffers so i'm trying to figure out how to you know
00:41:20
Speaker
juggle that but I don't want to stop because I still think if we reach even one person even even today we've changed the world I guess eventually I hope that it's not something like Parkinson's and that's what tears in my heart still help forcing me to grieve and just until we find a cure it'll definitely help but it won't you know fix what I've had to go through with my mother and the book has actually helped me a lot because it tells a lot more in-depth and deep that I can't get into here, but so grateful again for your time and the audience and everything you do.
00:41:53
Speaker
Yeah. So sharing, sharing your story and sharing your mom has been part of the way that you've been able to grieve. The, the Sharon's son is how you sign your, your emails. Sharon's son, George Sharon's son is one of the ways that you introduced the part of saying the name. And I think that that is something so important that a lot of times we don't want to forget. And by keeping on mentioning and mentioning the names of those that have passed away is so important. And one way in which you honor your mom's name, one of the many ways, one is the name of your website, one is the way you sign, one is the way you introduce yourselves is honoring, again, her name and keeping her memory alive in that way.
00:42:47
Speaker
So thank you for that and for for keeping her light and her legacy because you're her legacy, your kids are her legacy as well. But then just even what you're doing for others and and in her honor is also her legacy. So thank you for all that you that you do in that arena.
00:43:11
Speaker
I wanted to ask you George is there anything I have not asked you that you want to make sure you share with the audience regarding grief itself or as a caretaker if you have any tips of what things you you wish you knew as a caretaker or any any other thoughts you want to share with somebody that might be listening to this that may be going through the same thing.
00:43:40
Speaker
First, I want to thank you and your audience for the time today. It means the world to me and my family, and I think we need more talks like this about grief because it is I don't think there's enough. Obviously, you can't see it on the screen, but this is the tulip. If everyone wants to go online, it's just a tulip. It's red.
00:43:56
Speaker
at the top in green. And actually, if you look at it online, it's the word PD, which is Parkinson's Disease. And I wear this like literally 24-7. And I just, you know, want to I don't want us to have to fight. And I don't want us to have to keep doing all this. I think if we had more awareness, we would already have a cure. We would end this disease. And so many families wouldn't have a seat missing at the table.
00:44:20
Speaker
I'll keep fighting them until then. I have a little statement I always say at the end of my show, but we this is for you and your audience, and I'm sure you agree, but we love you, we support you, and we care a lot about you, and you're never alone.
00:44:34
Speaker
I alongside with the host will advocate for you and together our voices are so much stronger and I always say I'm just getting started because every day I meet incredible individuals like you and your audience and those interviews that pop up every day on my side because I've done so many I can't remember everyone but it kind of when I see it it just pops in my head like this is why we do this this is why we have to keep fighting this is why I will never stop until the secure memory and my mother so ah the only other tips are that again it sounds like repeating it that you're not alone in this and fortunately until we get more awareness people still out there don't know we're even here or we exist which is a sad thing but the only journey that breaks my heart today is the one that I'm not aware of.
00:45:18
Speaker
And together with your show, your viewers, if you share this and support your show everywhere, please share, share, share. I think, again, we' as a team, as a family, we'll be closer to a cure. So grateful again for your time and friendship. And like I said, this is to me, it's not going to end here, I hope.
00:45:37
Speaker
ah Thank you, George. And yes, it it is a matter of awareness. And maybe somebody listening to this, you you may not be someone living with Parkinson's or know someone of Parkinson's. But if you share this on social media or any of this, that you've listened to this podcast or about this topic, there will be someone out there. As you said, there's 10 million people in the world as of now that of are diagnosed with Parkinson's. And if you've interviewed 600 people on your podcast, talk to that that in itself is huge. So please
00:46:19
Speaker
share because someone else may need this type of community and going to together for sharing Sharon dot.com and we will put the links below. as And on that website, you'll be able to see all the links for your podcast as well as your book and how to be able to purchase it as well and how you're able to donate some to some organizations that support the research for Parkinson's disease.
00:46:45
Speaker
So thank you, George. Again, this was George Ackerman. I am grateful for you being here. Sharon's son, George. Thank you.
00:47:01
Speaker
Thank you again so much for choosing to listen today. I hope that you can take away a few nuggets from today's episode that can bring you comfort in your times of grief. If so, it would mean so much to me if you would rate and comment on this episode. And if you feel inspired in some way to share it with someone who may need to hear this, please do so.
00:47:29
Speaker
Also, if you or someone you know has a story of grief and gratitude that should be shared so that others can be inspired as well, please reach out to me. And thanks once again for tuning into Grief Gratitude and the Gray in Between podcast. Have a beautiful day.