Healing Through Advocacy: George Ackerman on Losing His Mother and Helping Others Fight Parkinson’s

Hello again, good people. And welcome to the cancer and comedy podcast, this podcast where we look to offer hope to

help you cope with adversities in life, particularly health-related. We talked about cancer quite a bit where we really.

talk about any kind of health-related adversity that people go through. And today, we're pleased to have you with us

Dr. George Ackerman, from the website togetherforsharon.com. And he else has a new book, “The Son’s Journey: From Caregiver To Advocate.”

and particularly has an emphasis on how Parkinson’s disease has impacted his family. So,

George, welcome to our conversation here today.

I really appreciate your time and your audience. I love the name of the show, even though you go through tough times,

there's always a good positive light at the end of the tunnel. Hopefully, that's how my journey will unfold today, too.

So thank you for your time.

I'm sure that your journey is gonna be helpful to us to our audience. So, when you call your you the website that you

have is called Together For Sharon. So, tell us who is Sharon? What does she mean to you?

Sadly, my mother died on 11/1/2020 due to Parkinson's disease. So, we started, or I started togetherforsharon.com and her

memory. I thought maybe a few people like five or 10 might see it, but it's We've checked the other day over 40,000

have visited and it's really become more than just me my forte, I lost my mother, unfortunately, due to Parkinson's disease.

She also had late onset dementia; she had Parkinson's for about 15 years. But it didn't really cripple her life until the last

four years. When I became her full time really caregiver. For the first several years, she didn't really share much I knew

the word Parkington that I myself was unaware of what it really was, we were told by many doctors that you don't die

from Parkinson's, you die with it. So, we would never have dreamt that she would pass it early, young, at age 69. She had

a few signs in the first few years of her left arm were stiff. It didn't really complicate her life like it did finally, the last four

years, we tried everything, and it didn't work. So, we went to a special University for a trial. And unfortunately, I don't

know if they changed the medication too drastically. But they came back that night. For me, it was called to rush over

to her home. And she had been moving her furniture out of her house due to feeling that there were Nazis inside and I

found that late-onset dementia might have come about, and she had delusions and hallucinations. So that's when I

knew it was time to really step in and help her at least be as comfortable as we could make it and also sometimes have

Parkinson's or the stiffness or rigidity of the body. Also, external tremors, some have internal and also really feel

unfortunately crippling where you X many can't continue to work. So, it's a fortunate disease. And

it's heartbreaking in so many ways I joined you in this George my own father, I had Parkinson's for many years. And he

manifested some of the things that you're sharing there about the stiffness of the body and the early onset dementia and

some several things he in, in his case, lost his voice, and he was a retired preacher. And so that was really hard on

him to lose his voice. And so, we had to deal with that for several years. And he passed away from a combination of that

and kidney cancer and some other problems that he had. But I joined you in that little bit of sadness, but you have

also shared here how your website in your book and the advocacy that you do is to remember your mom, so one of the

things we like to do here is to share good stories and stories that put a smile on your face are so good memory,

do you have any good memory or memory of you of your mom that kind of makes you smile or makes you feel

good? In comparison to some of these tough things you've already shared?

Yeah, I mean, one is my favorite. It's the cover of a book or my book. It's the if you can see here, they're watching that

it's such a journey. That photo I used with actually in my wedding goes to my favorite moments in my life first, obviously

getting married with my wife, but also my mother and I had the son-daughter dance and those few minutes. We really

Parkinson's didn't exist. So, it's one of the most memorable times I look back on. And that's why I chose it for the book, but we

we’re shooting just smiling. We were talking and laughing and you know nothing the world's felt like it's still for that

moment. And I always say Parkinson's doesn't define someone; unfortunately, it can take over their physical being, but it can

never take the great memories that they know you have but their loved one, so that was one of them. But there's so

many I know I miss sound funny now that we used to argue every Sunday morning when the whole family got together

to order food. Really bad. You know, everybody wanted to do specific food

and now Yeah, Sunday's common. actually, miss it.

In a weird way you missed the arguments. Is that what I'm hearing? You speak? Yeah, yes, sir. Well, you've read, you've

written this book,The Son’s Journey from caregiver to Advocate, and you have the website together for sharon.com with

lots of resources there. So, who are these resources for?

And what are they going to do for someone who picks up these resources

There are few years ago, I decided it's not just about my mother and my, my journey anymore. It's about everybody.

Unfortunately, it's the fastest-growing neurodegenerative disease in the world, 1 million people approximately have it in

the US, but it's growing and 10 million throughout the world. So, I actually interviewed 600 people throughout the world

from England, France, Spain, Iceland, and even Nova Scotia, I didn't even know they had, you know, that shows what

Parkinson does and how far that reaches. I put all the 600 interviews on the website, we don't accept money. We don't

want anything except people to know they're never alone, I started the website because I felt alone as a caregiver. And

even from my mother, we just didn't know where to go, it was all over the place chaos. So, I decided to build a site and

put resources specifically for people who have Parkinson's, for people who are caregivers. And we started a new section

in memory of older people who we've lost, unfortunately, due to Parkinson, because it's probably millions and millions.

So, we were just wanting to build a safe space for everyone to really feel. Number one, they're not alone. And number

two, that they also have a voice and that I'm out there, even though it's too late. Unfortunately, for our family, it's not for

everybody else fighting the disease. And my goal now is to meet with amazing individuals like you who become family

and your audience, because I'm trying to reach people who do not have Parkinson's and people who are not aware and

the only way we're going to ever end this disease is if we have everybody together in this fight.

So, I hear a couple of things here, George, I think are really good. You emphasize not being alone. That because many

people feel lonely when they go through Parkinson's or cancer or are related to people who go through those things

are somehow adjacent to it. And then you also said something about how you can then come together as a family to

fight it together. So, tell me about some of the stories that you've heard from people who may felt alone in this whole

process. And they found some new way to not be so alone. Do you have any stories like that, and people you've talked

to get to know who've been able to come together and be a family together?

Yeah, a lot of versus somebody wants to throw me that they were on the website reading during interviews for 10 hours.

So I wrote back and said, that's great, but don't spend the whole day. Because you know that he felt he had Parkinson's, he

felt alone. And he saw all the journeys, you know, I would say the only journey that breaks my heart is the one that I'm

not aware of today. But being able to go on there and see advocates, medical experts, and other people with

Parkinson's and their stories and their contact information all for free. Or you can actually reach out to them, and many

of them will respond. But together for Sharon is just me. We're not an organization on purpose. We're not a foundation, I

don't really want it to be one. I just you know, miss my mother, she was my best friend. And I just don't want others to go

through this also, big thing is this month is actually Parkinson's AwarenessMonthh throughout the world. And I've been

able to go to several events live. So, I love podcasting and also virtual because it brings so many people together that

couldn't have been there in person. I was at a Michael J. Fox Foundation event and, Parkinson's foundation event, this

Saturday, I'll be at American Parkinson Disease Association event. And being there live and people struggling coming up

and hugging us and crying and knowing that they're never alone. That's what it really pushes me to keep going forward.

One thing you mentioned there is that really Parkinson's and cancer and other debilitating diseases are no respecter of

persons you mentioned Michael J. Fox, and there's some other celebrity type folks that well known folks who this has

impacted and you've been able to bring, make some connections there and bring some of those folks into the family as

aware of what you're working on. Just a little bit about that and how that being able to make those connections, maybe

it's been able to help kind of raise the, you know, raise the tide for all people to have a little bit more awareness

because I know that's one of your the of your things that you're going for is awareness.

Yeah, I mean, I've been shocked and amazed at the support I've had. I actually recently had Jack Osborne who is Ozzy

Osbourne son was fighting the disease. He gave a little video from me. We also have Kenny G the famous musician

what is my mother's favorite musician. He actually played a song on the website, and also, as I met Janet Reno a long

time ago. Fortunately, she passed due to Parkington. So unfortunately, it seems that maybe me and you might, you are

affected in Iowa. So there goes that, but maybe someone in the fact that directly, but now I'm hearing every week that

their neighbor has Parkinson's, their cousin, or even the mailman, so it's unfortunately just spreading. And it's tragic, but

it is I keep hope that we will find a cure. If we get more people involved and have a celebrity that is great, obviously,

it's hard because they're very busy. But seeing that they, you know, put their word out there, and they're advocating like

Michael J. Fox, I met with him a month or two ago, and it was about heaven, like a dream. But it was so fast that flash,

but it's like a flash fire in your life. And, but at the same time, I was excited and thanking him because he was a hero,

because he could have just kind of went away. But he didn't, he decided to start a foundation. He's free $2 billion to

research. But I also saw the downside, he wasn't doing too well. He recently won an award. And he had too actually

come out in a wheelchair. So, you can specifically see what the does to people, he has more external tremors, which are

more noticeable. My mother had more internal. So, you know, it's even a struggle. Some people don't want to talk about

it. Some. I spoke with a famous celebrity recently, and I was hoping to speak to them and interview them. But they said

at that point, they're a little busy. And then I found out a little later on.

It was Richard Lewis and he had passed away. So, I mean, it's a horrible disease, and we really need to care to stop.

But it seemed like you also have seen the commonality of the, of the impacts of the disease upon people in all these

situations. And maybe, but each the unique gifts that people bring to bear to these, you know, you mentioned, Michael

J, Fox was able to raise a lot of money, a couple million dollars for his foundation. And yet I'm sure there's other people

out there. other walks of life are doing their own thing to help out a neighbor or to just to be connected as a friendly

voice to others. What do you think are some of the actions that people can do? You know, you're a, you went from a

caregiver, really, and I know how involved that can be. And it sounds like you were very involved with your mother to an

advocate, what are some of the actions that people can take to really be helpful? Whether you are the person with

Parkinson's are one of the caregivers, what are some actions people can

take to kind of step up their level of involvement here.

in my career prior to caregiving was I was a police officer and an attorney and have a PhD in criminal justice. But I've

always advocated for victims of crime. And today kind of correlated a little with the family mean with the Parkinson's

community because since last year, we've never had any legislature ever for Parkinson's. And finally, December

2023, the House of Representatives passed the first ever national plan 10 Parkinson disease, and now we're hoping it'll

go the Senate this year or next. So, all the viewers including yourself can reach out to your senators and tell them to

please urgently support the National plant and Parkinson's disease, which will be the first bill in US history. So, we're

actually, speaking now. And we're going through history a few years from now, hopefully it'll pass and I won't be able to

say everybody listening can now join into this is like a very rare and special moment. And hopefully, if it is passed, it'll

help change the world for funding for research for a cure. Also help family members, caregivers and those diagnosed

who are battling Parkinson's. This is a very historic time actually had the opportunity a few a week ago into the United

States Senator Rick Scott, and we discussed the national plan so it is making big progress and our you know, politicians

are listening and it's bipartisan, which is nice, because nothing

these days seems to be bipartisan, who wouldn't want to and

good point where Joe but I'm also hearing you say you're George is this is to be an advocate can not only be an

advocate for the particular person in your life, there can be things like raising money and legislation and other things

that you can do involvement in community groups, support groups, and so on, that people can do. Shorts

tirthankaras, any kind of all US frame it this way, any kind of way that that, that there's a higher power involved or a

spiritual element or anything on this line that's involved with people who can get involved with this, that as a part of the

process of helping to cope with Parkinson's or any other

debilitating diseases there an aspect of this that's involved from where you sit.

I mean, I feel I'm still grieving been for years, but I miss my mother every day, sometimes six to 200 pounds worked in

policing and I'll be sign on our podcast or talk and then I'll leave and fall apart because it's still very tough to talk about

it. I think coming together with other people is very important. Unfortunately, I'm not diagnosed and fortunately, but

and then I don't no longer a caregiver of someone living with Parkinson's. So, a lot of the time, I still feel alone. And I, me

second book follow up is going to be about that. But we decided, because I went to several support groups online, and I

just, I couldn't say much because I don’t, I'm not diagnosed. And then I didn't want to caregivers fighting. Now I don't

want to hear unfortunately, some of the tougher situations like your show, you know, kind of contracts on the phone

hard. So, we joined together with an incredible organization in Canada, and the more PSP awareness, we have a texture

tomorrow at four o'clock once a month, we have a support group for anyone who lost anyone, a loved one due to any

disease. So, it's from cancer to Parkington, dementia, Alzheimer's, and it's just a safe, confidential place is now recorded,

where we all meet, and we just talk and know that you're not alone. So, there are still a lot of work that has to be done

for people who have lost a loved one due to these diseases.

But I will definitely keep fighting until we have that out there.

Part of the heat fighting part is to kind of put one foot in front of the other and to keep going, as you mentioned, here,

you've you took some actions here, and you would use still kind of an emotional thing, you know, you still are grieving,

as you mentioned there. And I'm interested now in some of the kind of habits or day to day processes that people may

find to be helpful to cope with, to cope with Parkinson's or to cope with other some other debilitating disease, either

from a care cage caretaker perspective, or otherwise, what do you think, you know, you had to up uproot your life as a

academic person and as a police officer. And as an attorney, it sounds like you had to really uproot your life to really

focus on your mom, and now you have leaned into the advocacy. What are some things that people can do? The

day to day to cope, you know, kind of a day-to-day disciplines to cope when you have this massive thing over your

head. It's just there all the time? What are some of the day-to-day things people can do to cope I'm talking about it

could be exercise, it could be diet, it could be reading, it could be any number of things.

What do you think are some of the day-to-day things people can do to cope?

I think number one is you have to tighten follow this, unfortunately, and I just didn't have the time. But you have to take

care of your own health first if you want to be a great caregiver, because you're only as good as yourself to

the other, to your loved one. So, 45 minutes a day for both Actually, could I do it together with your loved one, but that's

very important diet is important. They don't know if still, if someone gets Parkington that we think it might be the

environment. So, the water we drink the camp lets you in cases out their people who went to serve in the military and

their families are now finding out they might have Parkinson, also the I just heard which are shocked your dry cleaning

the chemicals they use on the dry cleaning. I didn't even know that. And then finally, the mold and the pesticides are a

big problem. My mother was very healthy. She had no medical issues, but she lived in a nice house. But for 20 years, it

had mold and termites and we had people spray and back then we don't even know you know what was in there. We

also need to ban things like Powerlink, which is a dangerous chemical that banned the China than on the US. So, we

have to get our lawyers involved, legislators and a lot you can do, but really, for the regular person who is not out there in

the legal world, it's really just diet, exercise, and take care of yourself first because, again, if you're not healthy and taking

care of yourself, it's gonna be harder to take care of someone you love.

And say like a part of the process is the mental health part of it as well as it's important to try to be mindful and have a

mindset that is positive and progressing and try not to spiral down into some pretty dark places. You mentioned

loneliness several times for instance, do you think go into some dark places is a danger you know, for you know, people

who sometimes get so depressed or whatever that they threaten to

harm themselves or things like that? Is this a part of the danger that people deal with Parkinson's?

Unfortunate it is I have a friend who has Parkinson's and she told me that she actually almost tried to commit suicide

over the stress and all that and that's an important point you bring up that many haven't so we need to focus on the

mental health more. myself. I've been through a lot so I kind of deal with things but in my book, I actually have a

chapter called the last week and you know, my mother went from someone walking several miles a week to cane for

two years and a walker than a wheelchair and then dead down out of nowhere like literally span of four years. So, I was

sitting there with her we didn't know you know, we never thought she passed from it. But I went through depression

sadness, fear, anger. It's almost like the hierarchy of Maslow. I went My whole thing. Yeah. So, you know, again, great in

but I definitely agree with you. And I think that's a topic that should be maybe in the next chapter for another book

because I think it's a, I'm actually gonna write it down if I find my time. But I think the whole world needs to really look

more towards the work mental health. And ironically, I teach that. But even though we teach it some days, we don't, you

know, we think of others, like in law enforcement and all that, but can you tell us how you practice it to?

Well, you've, you mentioned how you, you know, the mental health part is important. And, and you've taught that and so on.

And I think another part that I really like to touch base with you about is how serving others, especially with a sense of

love and care, true care is important part of coping with bad things that happen. And it seems to me you're doing that

through your book, and through your advocacy or website. And some of that must have come from your mom, how did

your mom serves others? How did she serve you? For instance? What was a part of what she did to serve other people?

That's a great question. And it's a lot of proof to that she

was a school teacher for children and had a master's degree and she sacrificed everything to take care of me and me

brother growing up, though, I don't think I would be the man I am today. If it wasn't for her and her support, she was

always there, through the good, the bad and ugly, within a minute, she answered the phone, or at least I knew where I

could count on her. Anything, she advised me, I always took that advice. She was always right next to me on stage for

law school graduation, the police academy and my PhD, though I wanted to quit several times, all three of those things.

And she just said, don't give up and keep fighting. And that's what I'm doing to. Unfortunately, again, with too late for

us, for the euro, but not for, you know, the 600 people that have affected me that I've met and the million that are out

there and 10 million in the world and diagnosed there is a lot of groundbreaking research happening, they discovered

the Michael J Fox Foundation, a biomarker, that now there's actually a needle you can have in the spine, which is not

something I would want to do. But it'll determine if you have Parkinson, that trying to take that technology and bring it

to a simple blood test, I think in the next few years will be incredible. Because it helps not that you get Parkinson's, but

it'll help with the progression. So now we know that you know exercise can follow the progression, that if you're not

aware and know you have Parkinson's, you might you know, wait too long, and then it's too late like for our family. So

there's a lot of huge technological advances in medical research happening.

So, I'm confident someday there'll be a cure. I just don't know when unfortunately. Yeah.

You mentioned your mother's encouragement to us to don't give up and it sounds like yet your encouragement to other

people don't give up and how I don't want to things you mentioned in your in your website is one person can make a

difference. One person can bring positive change. So, let's share with me hell, a story now about somebody in your life

who you've seen impacted either by your book or by your work or by something in there that you've seen, have some

kind of change of heart or change of mind, or, you know, some change of their personality even perhaps, but how

they're handling it. I know you've dealt with an awful lot of people have you seen people change, for instance, you

mentioned people lonely, maybe people have found some way to make connections, can you share the story about

somebody who's had kind of a transformation, because of the ways you're helping them cope?

I mean, many people I meet the are out there fighting themselves, people who are diagnosed with Parkinson's, they're

on social media and on several social media and any day that I'm actually having my own spine surgery, a third one,

which hasn't been very successful next month, but I lay down and I think my pain and then I see their posts and how

they're struggling with Parkinson's and I literally filmed a video the other day of me getting up off the bed and just keep

going with Parkinson's awareness. Because no matter what we might have in our own life, we still have other people

struggling, maybe even more with other things. So, I just don't want to see that I want them you know, Michael J Fox

Foundation, I love that slogan. It's a We'll be here until Parkinson's is not. I think the same way. Don, I'm going to keep

doing this forever. We don't accept money I don't get paid for any of this the book even I don't care if anyone buys it,

which is they shouldn't say but I just wanted my mother's journey in the world out there. So, people who do want to learn

or understand the inside of what's happening or becoming a caregiver, they have that but my big thing again is if you

come to the website if you follow me on social media, we're all team in this we're family and I don't want anything in

return but for everyone to know that we you know, are there for them and we're not going to stop till we find the cure.

Not going to stop to find a cure. That's wonderful. Well, tell us what it let's just say that there's somebody out there

dealing with Parkinson's or a caregiver so with Parkinson's, they may have They're just kind of starting their journey?

And what help could they find on your website or in your book to help them navigate their journey?

And then after that, tell us tell us, tell us ways we can people find good find your book,

I just want to thank you and your audience again, for the time, it just means more than just a speech or a talk. It's mean

so much to so many. I'm grateful. My website together for sharon.com, you can spell it out, it's just me, it looks like it's a

corporation that just did I put a lot of my heart and money and time into it, but it's not Do you want to donate, you can

go to our website, and there's actual links from organizations like the Parkinson's Foundation, they're actually their links,

not mine. It's just a memory of my mother. So, if you donate it goes right to the big organization, we don't have anything

to do with it. But the book is important to me. And again, it just came out a week ago, actually. And it'll show you the

first signs of Parkinson's symptoms that are associated, my caregiving and how important my wife and children were in

my fight to support me. Also, the last week of my mother's life, family and friends actually wrote passages and how they

remembered her, and also the mission forward and how grateful I am to so many that I always leave everybody with

this message. We love you, we support you; we care a lot about you, and you're never alone. I will allow the kid

alongside, obviously you together will advocate because our voices are so much stronger. And I always say I'm just

getting started because every day I wake up and find a new individual struggling or you know, journey. I wasn't aware it

kind of reenergizes me to get back out there and keep going. But again, I just want everyone to know that we send us

love support, and you're never alone in this fight. And thank you all again for your time today.

And you're never alone, which is kind of the key to everything you talk about here. You're never alone in this fight. And

therefore, the name of your website is to gather for Sharon Who was your mother this together for sharon.com, and we'll

put links to your website at our website, cancerandcomedy.com, and the name of the book is The Son's Journey

from caregiver to advocate and our guest today here on Cancer And Comedy

Dr. George Ackerman. Goerge, we thank you so much for being our guest today.