December 7, 2024 • 29 mins
What happens when a dedicated law enforcement officer transitions into a full-time caregiver role? Join us in a moving conversation with Dr. George Ackerman, as he shares his personal journey from serving his community to caring for his mother throughout her 15-year battle with Parkinson's disease. George opens up about the emotional challenges and triumphs of caregiving, offering a heartfelt tribute to his mother's legacy through his advocacy work. Discover how his newly released book and website aim to raise awareness and support for millions affected by this debilitating disease worldwide.
The episode also highlights significant legislative efforts in the U.S. aimed at tackling Parkinson's, including a groundbreaking move to establish a national plan. We reflect on our personal experiences with the disease, including the emotional toll it takes on families and the urgent need for public awareness and education. Together, we explore potential environmental and social factors contributing to these illnesses and the power of community in navigating such challenges. Through storytelling and advocacy, we remind listeners of the strength found in shared memories and collective action, a testament to the enduring support available for those affected by Parkinson's and similar conditions.
Find George Here: https://www.facebook.com/togetherforsharon112020
http://www.togetherforsharon.com
Mama Mental Wellness Guide: https://www.sydneycrowe.com/mamamentalwellness589191
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Hey, hey, everybody, Welcome back to Conquering Chaos
.
A mom's guide to self-care andsanity.
I'm your host, Sydney Crow, andtoday we have Dr George
Ackerman.
Welcome, George.
George lives down in Florida.
He's originally from Brooklyn,New York.
He had his mom recently passaway from Parkinson's, but he
has pivoted his lifelong careerof advocacy, whether that was in
(00:22):
the criminal justice area tonow in the medical realm.
So I'm really excited to havethis conversation with you today
, George.
Speaker 2 (00:30):
I appreciate your time.
It means the world to me and myfamily to be able to speak to
you and your listeners today.
Speaker 1 (00:36):
Yeah, I mean, why don't you share to the listeners
a little bit more aboutyourself and who you are and
what this journey is all aboutfor you?
Speaker 2 (00:44):
Yeah, I started my journey, my career, first in the
world of law enforcement.
I always had a dream of helpingvictims of crime.
I just wasn't sure how to do it.
So after some time I decided togo into law.
So I worked in the prosecutor'soffice intern and I saw that
there just wasn't enough time tohelp victims.
(01:07):
So I wasn't sure what betterway to help them, support them,
so I decided to go into thefield of policing.
Found out again, you just don'thave time, like I would have
liked, to hand a brochure andyou have to move on to the next
call.
So I did find myself kind of notlost but wondering how I could
make an impact, and luckilythrough teaching as a professor,
(01:28):
and then my dissertation was inthe area of family members of
homicide victims.
So I was really had an honor towork with a group of
African-American mothers in WestPalm Beach who sadly lost their
loved ones to the murder crime,and I was really impacted
myself because I was able to sitalmost knee to knee with these
(01:49):
individuals and help them, youknow, reintegrate back into
society.
So I've always been an advocate.
Unfortunately, I was throwninto the world of caregiving
when my mother started todecline the last four years of
her life.
She had Parkinson's disease forapproximately 15 years.
It didn't really affect herwhole life like where she wasn't
(02:10):
able to be independent for thelast four years, and that's when
I really took over and caredfor her.
And I always say I don't thinkI'd be the man I am today if it
wasn't for her sacrifices.
So when it was time for me tokind of step up and help her, I
was ready for the challenge.
Speaker 1 (02:28):
I can completely appreciate that and it's a
challenging journey but abeautiful one when you're able
to be there for your loved ones.
I mean, as you know, my fatherrecently lost his life to PSP,
which is very similar toParkinson's in a lot of ways,
and in his journey, thank you,wasn't as long as your mom's
from diagnosis, which wasmisdiagnosed originally as
(02:50):
Parkinson's, to his passing wasless than four years, and it it
is.
It weighs on you a lot in theend.
So why don't you talk a littlebit more about about your mom's
journey, about your journey?
I mean, you've been a verystrong advocate for Parkinson's
and to raise awareness for it.
(03:12):
So I know that you wererecently at the Unity Walk and
got to meet Michael J Fox again.
Why don't you talk just alittle bit more about how you
are able to advocate and whatthis means to you, to bring
awareness to it?
Speaker 2 (03:24):
Yeah, as you have, and I'm sorry again to you and
your family for your loss.
I wish we could end all thesediseases.
I just you know there'sdifferent types of people think
you're like me, we fight back.
I could have just kind of wentaway, you know, and remember my
mother between us and that's it.
But I started together forshramcom In her memory.
I thought maybe three peoplewould see it.
We've had over 40,000 peoplevisit.
(03:46):
I don't know how, why or what,but part of me is worried that
that means the disease isgrowing.
It's the fastestneurodegenerative disease in the
world, not just in the US.
It was only two years ago Idiscovered that 1 million people
approximately have Parkinson'sin the US, but also 10 million
in the world.
And I was shocked because I youknow I'm in the US, I believe
you are, and kind of just in ourlittle bubble.
(04:08):
You know I love other countriesbut I never think much about
them because you know I'm stuckin Florida.
So when I discovered that Idecided it's not about my mother
and me only.
So I interviewed 600 peoplearound the world from England,
france, spain, iceland, evenNova Scotia, australia, africa
and just was shocked to find outParkinson's disease doesn't
(04:29):
discriminate.
It can get to, unfortunately,everyone anywhere.
And that's when I decided to goon the journey and it helped me
kind of grieve and cope.
Even today, speaking to you, ithelps, but the more I kind of
remember my mother's memory ithelps me still.
It's been four years.
But one quick thing is if youcan see the this side, that's
not real.
(04:50):
We just released a book, a weekor two ago actually, and I
didn't really have a dream.
I've written books, but moreabout constitutional law and you
know the legal matters, butthis is the first in Parkinson's
awareness because I wanted toshare my mother's journey.
But it goes through this beforeyou know, beginning of her life
, how she was a school teacherand had a master's in psychology
(05:10):
but gave it all up thatsacrifice and take care of and
raise me and my brother.
So that was.
And then it leads up toParkinson's and our struggle.
I actually documented in my ownlittle journal, which I never
did before, the last year of herlife.
If we have time I can read justa teeny paragraph, but it just
brings you really inside thatthe good, the bad and the ugly.
(05:31):
But there is a good side at theend, which is I met some
incredible people like yourselfand your audience, who really
inspire me to keep pushing andkeep fighting until we find a
cure, not just again, again forParkinson's, but for PSP, as you
mentioned.
Actually, if we have time again,there's just so much to talk
about.
There are a lot of individualswho are misdiagnosed and that's
(05:52):
a big problem because you can'tget the right treatment.
Some people aren't diagnosedearly enough but you can't get
the treatment.
We don't know what happened inmy mother's case, doctors, we
went to 15.
I did everything you coulddream of and more.
So I have no regrets, except wedidn't have a cure.
But you know, it's just verytough type of topics.
But there is a light in thetunnel of darkness at the end of
(06:14):
life because I've been able to,you know, meet so many
incredible people.
Even today I got a call from agentleman who has Parkinson's,
not doing well, but I met him onsocial media.
He wrote a book and you know, alot of times people are scared
to meet me or talk because theythink in 2024, you want
something in return.
But when they speak to me, whenthey meet me, when they get to
(06:34):
know me, they're in kind ofshocked, I guess.
But I don't want anything inreturn.
We don't accept money.
The only thing I do accept isthat everyone listening can
please share this and supportyour show, but know that there
are people out there like usfighting for them, and I'll
never stop until the cure.
Speaker 1 (06:53):
I mean, it is just a beautiful journey that you're on
and you're raising so muchawareness.
I mean the fact that youstarted your website with the
hopes that you know maybe threeto five people would see it, and
now I think the number you saidwas 40,000.
Speaker 2 (07:05):
It's secret, which is not secret, but if you scroll
down a little there's a littlecounter.
I didn't even know if someonetold me and it actually tells
you how many times peoplevisited, which is so cool, and
you know.
Again, I don't do it for any ofthat, but I just, you know, I
(07:28):
want people.
The only journey is my favoritesaying which is not good, but
my only.
The only journey is my favoritesaying which is not good, but
my only.
The only journey that breaks myheart is the one that I'm not
aware of, and there's just somany incredible people out there
, like yourself and your family,that just people aren't aware.
And if they were, I guaranteewe'd have more support, we'd
have more people involved.
You're always going to have thecuckoo people I'm not like,
even we just happen to betalking and we.
I was at the unity walk of sucha dream.
I got to meet Katie Couric,which is like a legend.
It was an act.
I got to meet Muhammad Ali'sdaughter, who I interviewed a
(07:48):
year ago, but I got to meet like20 to 50 people who I've
actually interviewed already ayear ago, but we never got to
physically see each otherbecause there's no way.
I'm just.
You know they're all over theworld, so there's no way but
this brought everyone togetherso we posted.
Michael J Fox wasn't supposed tobe there.
He shows up out of nowhere.
I happen to be standing there.
He gave a speech.
He wasn't doing too well, whichwas tough to see, but I love
(08:11):
him, he's a hero of mine.
But you put that on YouTube andyou 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'mlive 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 peoplecan get a feel of it.
(08:32):
So this doofy person and I'm inlaw enforcement and attorney,
so I don't care, but it botheredme a little.
Still, they write for such agood cause.
There's no people there.
I mean the guy, we.
They raised over two milliondollars, I think in one day.
They're over like thousands ofthousand people.
But because I didn't put it onmy video.
Speaker 1 (08:50):
So you're always going to get that.
Speaker 2 (08:52):
that's actually what a future book I've already
written is going to be about.
Is you know, whether it'ssocial media or in your real
life, never, ever, ever, let oneperson, some stranger or anyone
tell you not to do somethingthat your heart says to do, and
in my case it's fight for othersand, like I, said no matter
what happens?
I'll keep doing that.
Speaker 1 (09:11):
I mean you're just such a generous and giving soul
and I mean this definitely is acause that needs as much
awareness as possible.
I mean, like you said, I'mactually up in Canada, but I
mean this disease does notdiscriminate 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 wasdoing okay and the next he just
(09:34):
wasn't.
The decisions that werehappening, there were
circumstances and and we needed,there were red flags that were
coming up, but in those momentsit just it felt like it came up
out of nowhere.
And I know with a lot ofdiseases like this I mean a lot
of times it can it just feelslike it comes up out of nowhere.
Can you speak to that a littlebit?
(09:54):
I mean, I know you'vedocumented this journey with
your mom and you've raised somuch awareness.
What is your?
take on that.
Speaker 2 (10:02):
Yeah, I do want to say I love Canada because I've
actually interviewed Parkinson'sCanada so they actually share
my information.
I interviewed their staff andright now it's a long story fast
In the United States.
Last December was the firsttime in US history we passed
through the House ofRepresentatives the national
plan to end Parkinson's diseaseand sadly but excitingly in both
(10:24):
words we've never had any lawsever in the history of the
United States with people withParkinson's.
Now we're trying to move it tothe Senate.
But my dream is, if and when itpasses and signed to law, I'd
love to see Canada and everycountry take it as a boilerplate
and pass it in your states andcountries, because no person
with Parkinson's should reallyhave to pay for medicine.
(10:46):
It's a disease that they didn'task 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.
On my website on Together forSharing, and what it is is, I
just list people who haveParkinson's but they have some
incredible traits or things Likeone's an artist, one makes
t-shirts for Parkinson's, onejust can't afford the medicine,
(11:07):
so we put them all up there withtheir website.
I have nothing to do with itand I'm hoping people will help
fundraise for them directly,because all the big
organizations are great, a lotof times the little people don't
really see that.
So anyway, I'm always reallyinnovating, trying to think of
ways to help people, and wedon't accept a penny, like I
said, for any of that.
It's just up there to answeryour question.
(11:29):
Can you repeat it?
Sorry?
Speaker 1 (11:31):
That's okay.
Yeah, I just said like it feelslike it's almost sneaky, like
it kind of comes up out ofnowhere and in my dad's case,
because PSP is very aggressive,it was really fast yeah.
Speaker 2 (11:43):
All right, so much I want to talk about.
I don't have the time foreverything, but to answer that I
agree, like I mentioned earlier, my mother had Parkinson's for
15 years.
She had towards the seventhyear she had stiff, like her arm
was stiff, so she had a lot oftrouble but she still was able
to live independently, driveshop, have friends shop, do
(12:04):
clothing everything like aregular person.
Do you know clothing everythinglike a regular person?
But the last four years it feltlike it came out of nowhere
because we were told so manytimes that you don't die of
Parkinson's, you die with it.
So my mother was a young, 69years old and she had no other
medical issues at all, nothing.
So all of a sudden we decidedbecause all the doctors you know
(12:25):
they tried.
I don't blame doctors oranything, because it's not their
fault, it's a disease but theywent to a special university for
a trial.
The same night she came back Idon't know if they drastically
changed her medication, but shewas never the same.
I got a call to rush over toher house at 4 am and she was
moving her furniture out in fearthe Nazis were inside and they
were going to harm her.
I rushed her to the hospitaland they said she could have
(12:49):
died.
She had some kind of a likeattack or something was horrible
and you know, no matter whatfield you're in or class you
take, you're never going to beprepared for that, to see your
loved one, and that she was.
Really it was a mess of anxiety.
Anyway, I found out later shealso had on late onset dementia,
which now, not only withParkinson's, you can have
(13:10):
external tremors, like MrMichael J Fox, and also some
internal, and dystonia, which isthe curling of the toes, a lot
of rigidity, which is stiffness,but really the famous.
I don't think it's famous, butthe kind of some of the
misconception is that it's likeit's the moving disorder.
You, literally, your brain,might say to move, but you're
(13:33):
stuck like literally you can't.
You're like the, you just can'tmove and that's what.
And then some others, like mymother, it's uncontrollable
shaking that she would just moveand couldn't control, which was
horrible.
So you take a beautiful, any oneperson, and you put this
disease that destroys them, andshe lost a sick amount of weight
.
All the medicines weredestroying her gut and her
(13:54):
stomach.
She didn't sleep.
We had to hire staff just towatch 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, thenyou have the dementia, which
brought hallucinations,delusions, which is something
(14:15):
that I can't even explain.
It was just horrible and Iactually 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.
At 8 am my mother calls veryupset and cries that I shouldn't
forget about her and take herout of her place and to my house
(14:38):
.
She believes people are harmingher.
I calmed her down but thesecalls are constant, repetitive
and almost round the clock.
She says that the nighttime aidis mean but likes the daytime
aid.
Yesterday she loved thenighttime aid but hated the
daytime aid.
So you know, if you want toreally be taken deep into it,
you can read the book I've beendoing really well, like I'm
(14:59):
surprised because the hardestthing is with Parkinson's or PSP
.
People aren't aware.
So if they're not aware theymight not even know about the
book.
So my dream is really to getthe book out in the world and I
shouldn't say it and I keepsaying it, but I don't care
about the money because it'sreally more.
I feel like it's moreeducational and so many people
who could benefit from it.
Some people might not want toread it because you don't want
(15:21):
to know.
You know some people.
Just, it's a beginning, amiddle and end of life and for
some people just want to ignorethe end of life when you could
plan for an attorney, power ofattorney.
You can plan for will.
You can plan for so manyimportant things housing that if
you just wait that coulddestroy a family and become 10
times worse.
But that's a different world toget into.
(15:42):
But again, to go back to yourquestion, I mean it came out of
nowhere.
I wasn't prepared, I'm stillnot in shock, and one thing we
mentioned earlier is the numberone rule in caregiving is to
take care of yourself first, soyou're no good to your loved
ones.
And I didn't do that because Ijust didn't want my mother to
feel uncomfortable for somereason.
When I was by her side she wasokay, like she was.
(16:03):
I mean, she saw the you knowdisease, but she was, she felt
safe.
And now today it's an advocate.
I'm still not following thegolden rule because, like we
said, if I let's say I'm notdoing too well today, I'm kind
of sick and I didn't want tomiss this because I feel like,
if we even reach this one personout there and then I wear a PSP
and Parkinson's and thendementia, that we've changed the
(16:23):
world.
So you have to sacrifice sometime time.
But I'm struggling personallystill today with how much.
And we went to New York theother day for one day, which was
not an easy trip flying.
I didn't sleep in the hotel atall, 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
(16:45):
and then went right back towork and you know you have to
juggle things, but to me this isreally like my life's work.
I feel like there's a fire inmy heart and I can't stop till
we find a cure, because everytime I hear somebody like you
who lost a loved one or I meanmr michael j fox, I like when I
met him a month or two ago, itwas just us and I was in a
(17:06):
special area with a lot ofpeople, 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 waslike amazing.
But at the same time I went intothe bathroom after I fell apart
and I'm 62, 200 pounds a lawenforcement, but I saw my mother
a little in him, but he'sstruggling and now he could
barely walk.
He was in a wheelchair recentlyand I hate seeing that, so
(17:29):
that's what drives me to notgive up.
But then again I'm battling.
I could probably write a bookabout that, but I'm tired of no
more books.
Speaker 1 (17:38):
It is important.
I mean I will advocate for youfor the self-care.
I mean it really is importantto just take pause, but I know
when you have, like you said, afire in your heart on a cause
that is just so needed.
I appreciate your drive.
So thank you for doing that andthank you for spreading so much
awareness around this.
(17:59):
I'm very excited You'verecently 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 wesign off and we can let you go
rest, because I know it isimportant You're actually
helping me and your viewers andit means the world to me to have
this time.
Speaker 2 (18:16):
I hope this is really not just about a conversation
that you know you do a show andyou say goodbye and you part
ways.
This conversation does reallyhave to continue until we find a
cure, because until we do westill have a lot of work to do.
So I don't have Parkinson's.
We're not really sure howsomeone gets it and that's
another podcast, but I feelpretty strongly.
It's environment.
(18:37):
My mother had a nice home butshe had mold, she had termites.
We had weird people spray.
Who knows what they used backthen.
It's just frightening.
That we even have pesticides inthe supermarkets is frightening
.
I found out after interviewingan expert in parkinson's, a
professor, a doctor andprofessor.
He said you can actually getparkinson's possibly from the
cleaning.
(18:57):
So when you dry, clean itbecause they're using horrible
chemicals.
So he was telling me this whileI had chemicals on my jacket.
I wanted to burn the jacketwhile we were speaking.
That was interesting, butanyway.
So I don't have parkinson'sright now.
We don't know future whatever,and I don't.
I'm not, unfortunately, acaregiver of someone alive with
(19:17):
parkinson's and that kind of gotme upset because I do feel
sometime now you have the world,they've really opened their
arms to me.
But there are individuals andorganizations that still, I feel
, don't keep us in theconversation.
And I say us because you know,unfortunately you lost your
father, but you know it's likethey concentrate which I agree
on the cure and for people aliveand their caregivers.
(19:39):
But you know we have 10 millionor 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 nowfor people like us, because we
still have a voice.
My mother and your father stillmatters and I see a lack of, uh
, something missing for peoplelike that and I feel if you
brought those millions of people, families back to keep their
(20:01):
memories alive, what a force wewould have, even 10 times
stronger.
But you know they just don'thave the resources of time, I
don't know.
But so that leaves me in theworld.
So I went to, I tried to findsupport groups because I do
think it helps virtual.
I went to some with peoplediagnosed.
I didn't fit in so I didn't sayanything.
It was odd.
(20:21):
Then I went to caregivers, butthat was for people alive.
So again, I'm not going to sharemy journey and things because
then they'll be all mad at me orupset, because I still hear
people say to this day, like youknow, even on stages they say
you don't die, but you die withit.
My mother maybe she didn't diefrom Parkinson's, she died from
all the Parkinson's medicines orsomething, so it was because of
(20:41):
Parkinson's.
So anyway, I'm not a scientist,so I don't get into all that,
but I could only speak on myjourney.
Also, there's no cure becauseeverybody's so different, which
is also a complicated thing.
What happened to my mother?
She had late onset dementia.
It doesn't mean someone elsewith Parkinson's will even get
dementia.
So anyway, I found myself kindof grieving again, feeling like
(21:02):
I didn't count, I didn't matter,and I just thought about, you
know, starting my own thing andthankfully, a group in Canada
which is near you, probablyLaura, she was incredible, but
it's called PSP Awareness andthey're a group in Canada but
they cover the world and wetogether decided why don't we
start something?
So we started a support group.
It's once a month for an hour.
(21:23):
I think it's like the thirdTuesday, but if you go to
Together for Sharing.
Click About Us.
The support group's right there.
It's all free.
It's confidential.
But it's for anyone who's lostany loved one due to any disease
so confidential.
But it's for anyone who's lostany loved one due to any disease
.
So psp, parkinson's, dementia,alzheimer's everybody's welcome.
Again, it's completely private,confidential.
(21:44):
Luckily we've had a nice group.
I don't really want it to betoo many people.
If you don't have, if you havemore than like few, then it's
you don't get to talk.
So it's just an amazing.
Last month I remember two peoplehad lost a loved one due to PSP
and one with Parkinson's, andas he was talking, my heart was
shuddering because I'm likeyou're in the right place, you
know, because we have a lot incommon, unfortunately.
(22:06):
But it helps to talk aboutthings and that's why I really
enjoy these talks, because youknow it still helps.
Even looking at the coversometimes, I found myself almost
very sad, even though it was myone of my happiest moments in
my life.
That was the picture of mymother and I, and we were
actually dancing at my wedding.
(22:27):
So it was an incredible daybecause I finally got to marry
my wife, who's my best friendnow.
She's been my support of thewhole chapter from my wife and
the book and my children and mymother used to love like sunday
morning blowing bubbles in thebackyard with the kids and I
often walk by the backyard anddon't see that anymore and it's
you know, sorry, it stinks.
(22:48):
I don't want to curse on yourshow, but I'm from brooklyn
that's okay, I appreciate it,nothing we couldn't bleep out
anyways.
Speaker 1 (22:56):
But I know I and that feeling it does it.
I, I don't know, with grief, ifthat feeling will ever go away.
Speaker 2 (23:04):
I mean, it's to be determined, I guess the one
thing is uh, parkinson's mighttake a love, one PSP, but it can
never take the memories.
And that was my favorite memoryof my mother and I, because in
that moment, even three minutes,parkinson's didn't exist.
We joked, we talked, we laughedand we loved, and that
symbolizes her life.
And that's why this book is soimportant, beyond any selling
(23:26):
things, because it'll keep hermemory alive forever, beyond me,
beyond my family.
And I mean just today somebodyincredible I don't even know why
I did it, but he took a picturewith the book and put it on
LinkedIn and I just wasscrolling and I see my mother.
It was a great feeling.
That was kind of worth it allfor me, and I hope it goes viral
(23:48):
and other people.
I 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 outthere.
And you know, I just thinkthere's so much more in there
that we just wouldn't have thetime to get to.
Speaker 1 (24:09):
Yeah, and that's okay .
We'll make sure to include alink for the book in the show
notes so that everybody who iswanting to get a copy that will
be able to.
One last question, because youkind of touched on this and we
don't really know whereParkinson's or PSP comes from.
But it's interesting to me thatthe focus is so on finding a
(24:32):
cure when we don't even knowwhere it starts In your research
and your advocacy.
Do you have any insight ontothat?
Speaker 2 (24:42):
Yeah, I don't think it's genetic.
I feel it is social, not justthe surroundings, like the
environment.
So the water we drink, the dryclean, the food we eat, the
pesticides bug spray, I meanthere's a thing called Paraquai
that was banned in China, thepesticides bug spray.
There's a thing called Paraquaiwhich was banned in China but
not in the US.
(25:03):
I'm not sure about Canada.
That's poison.
We need to get legislators, weneed to get more involved.
The other problem is if you wantto be very healthy, which you
should, so diet is big, exercise45 minutes a day, even if you
don't have Parkinson's, you haveto do that.
We know these things are outthere but we still, you know, do
it, which is tough.
(25:23):
Like you go, you got to get,you got to eat, so you go to the
grocery and then when you talkabout organic, which is the best
, that's very expensive.
Some people just can't affordit.
So it's a society where we cando the things, but we still,
some people, can't because ofhow things are regulated,
because of the high costs.
So all these things need to bechanged.
I don't know if they will orwhen.
And then also there's a famouslawsuit called Camp Lejeune,
(25:44):
where people from the militarywere getting Parkinson's and
dementia because they believethe water and the contamination
in the military camp.
So there's a lot of cases outthere, but no one's.
You know they're not doingenough about it.
So we have to make ourselvesaware, not just about the
disease but about thesurroundings or environment, the
(26:05):
stress.
Speaker 1 (26:06):
I mean I'm pretty sure there's a study out there
now that is saying that more offirst responders are predisposed
to Parkinson's because of thehigh stress environment and so,
yeah, I mean bringing thisawareness.
I appreciate this conversationso much.
You guys make sure we'll putGeorge's website in the show
notes as well as a link to hisbook, so you guys will be able
to find more information out.
(26:27):
Spread the word.
I mean it is still fairly rawfor me losing my dad at the time
of this recording just a couplemonths ago, and hearing your
journey and hearing more of yourstory.
I mean that loss, you know, wejust don't know when that'll
start to alleviate.
(26:47):
Sorry, I'm getting a littlechoked up, so we will.
Speaker 2 (26:51):
I don't.
I usually end everything withthis message but don't fall
apart, please.
This is for motivational, butif you don't mind, I want to
just say this to you and theviewers but we love you, we
support you, we care a lot aboutyou and you're never alone.
I will advocate for you andtogether I feel our voices are
just so much stronger.
And I always say I'm justgetting started, because,
(27:11):
meeting you now, while we'retalking, all these amazing
thoughts and things, now I'mready to go out there and keep
fighting for you, for yourfamily and for everyone out
there.
And you know, unfortunately,some days, like I said my, I'm
having major spine surgery, athird one next month, but I
guarantee from the bed I'llstill be fighting for
parkinson's awareness because,uh, no matter what I have or
(27:32):
pain, it's nothing compared towhat 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 workingtogether because our voices
together just so much strongerwe might.
You know I'm only one son.
One person lost his best friend, mother.
Look what I can do and if wejoin to you, with you, like 10
(27:54):
other people in your audience,oh my gosh.
We could crush these diseasesand them forever and maybe talk
about something else, like theweather outside.
So until then, we have to keepfighting and I'm going to be
right out there by everyone'sside until we end this.
So again, I'm so grateful foryour time and we send our love
to you and your family and, likeI said, I'll never let your
(28:14):
father be forgotten too.
Speaker 1 (28:16):
I appreciate that, George.
I'm very grateful that we wereable to be connected and that
you were here and thank you somuch for that lovely closing
message.
And thank you, guys, for tuninginto today's episode where we
help you conquer the chaos, oneday at a time.
Hey, hey, everybody, Welcome back to Conquering Chaos
.
A mom's guide to self-care andsanity.
I'm your host, Sydney Crow, andtoday we have Dr George
Ackerman.
Welcome, George.
George lives down in Florida.
He's originally from Brooklyn,New York.
He had his mom recently passaway from Parkinson's, but he
has pivoted his lifelong careerof advocacy, whether that was in
(00:22):
the criminal justice area tonow in the medical realm.
So I'm really excited to havethis conversation with you today
, George.
Speaker 2 (00:30):
I appreciate your time.
It means the world to me and myfamily to be able to speak to
you and your listeners today.
Speaker 1 (00:36):
Yeah, I mean, why don't you share to the listeners
a little bit more aboutyourself and who you are and
what this journey is all aboutfor you?
Speaker 2 (00:44):
Yeah, I started my journey, my career, first in the
world of law enforcement.
I always had a dream of helpingvictims of crime.
I just wasn't sure how to do it.
So after some time I decided togo into law.
So I worked in the prosecutor'soffice intern and I saw that
there just wasn't enough time tohelp victims.
(01:07):
So I wasn't sure what betterway to help them, support them,
so I decided to go into thefield of policing.
Found out again, you just don'thave time, like I would have
liked, to hand a brochure andyou have to move on to the next
call.
So I did find myself kind of notlost but wondering how I could
make an impact, and luckilythrough teaching as a professor,
(01:28):
and then my dissertation was inthe area of family members of
homicide victims.
So I was really had an honor towork with a group of
African-American mothers in WestPalm Beach who sadly lost their
loved ones to the murder crime,and I was really impacted
myself because I was able to sitalmost knee to knee with these
(01:49):
individuals and help them, youknow, reintegrate back into
society.
So I've always been an advocate.
Unfortunately, I was throwninto the world of caregiving
when my mother started todecline the last four years of
her life.
She had Parkinson's disease forapproximately 15 years.
It didn't really affect herwhole life like where she wasn't
(02:10):
able to be independent for thelast four years, and that's when
I really took over and caredfor her.
And I always say I don't thinkI'd be the man I am today if it
wasn't for her sacrifices.
So when it was time for me tokind of step up and help her, I
was ready for the challenge.
Speaker 1 (02:28):
I can completely appreciate that and it's a
challenging journey but abeautiful one when you're able
to be there for your loved ones.
I mean, as you know, my fatherrecently lost his life to PSP,
which is very similar toParkinson's in a lot of ways,
and in his journey, thank you,wasn't as long as your mom's
from diagnosis, which wasmisdiagnosed originally as
(02:50):
Parkinson's, to his passing wasless than four years, and it it
is.
It weighs on you a lot in theend.
So why don't you talk a littlebit more about about your mom's
journey, about your journey?
I mean, you've been a verystrong advocate for Parkinson's
and to raise awareness for it.
(03:12):
So I know that you wererecently at the Unity Walk and
got to meet Michael J Fox again.
Why don't you talk just alittle bit more about how you
are able to advocate and whatthis means to you, to bring
awareness to it?
Speaker 2 (03:24):
Yeah, as you have, and I'm sorry again to you and
your family for your loss.
I wish we could end all thesediseases.
I just you know there'sdifferent types of people think
you're like me, we fight back.
I could have just kind of wentaway, you know, and remember my
mother between us and that's it.
But I started together forshramcom In her memory.
I thought maybe three peoplewould see it.
We've had over 40,000 peoplevisit.
(03:46):
I don't know how, why or what,but part of me is worried that
that means the disease isgrowing.
It's the fastestneurodegenerative disease in the
world, not just in the US.
It was only two years ago Idiscovered that 1 million people
approximately have Parkinson'sin the US, but also 10 million
in the world.
And I was shocked because I youknow I'm in the US, I believe
you are, and kind of just in ourlittle bubble.
(04:08):
You know I love other countriesbut I never think much about
them because you know I'm stuckin Florida.
So when I discovered that Idecided it's not about my mother
and me only.
So I interviewed 600 peoplearound the world from England,
france, spain, iceland, evenNova Scotia, australia, africa
and just was shocked to find outParkinson's disease doesn't
(04:29):
discriminate.
It can get to, unfortunately,everyone anywhere.
And that's when I decided to goon the journey and it helped me
kind of grieve and cope.
Even today, speaking to you, ithelps, but the more I kind of
remember my mother's memory ithelps me still.
It's been four years.
But one quick thing is if youcan see the this side, that's
not real.
(04:50):
We just released a book, a weekor two ago actually, and I
didn't really have a dream.
I've written books, but moreabout constitutional law and you
know the legal matters, butthis is the first in Parkinson's
awareness because I wanted toshare my mother's journey.
But it goes through this beforeyou know, beginning of her life
, how she was a school teacherand had a master's in psychology
(05:10):
but gave it all up thatsacrifice and take care of and
raise me and my brother.
So that was.
And then it leads up toParkinson's and our struggle.
I actually documented in my ownlittle journal, which I never
did before, the last year of herlife.
If we have time I can read justa teeny paragraph, but it just
brings you really inside thatthe good, the bad and the ugly.
(05:31):
But there is a good side at theend, which is I met some
incredible people like yourselfand your audience, who really
inspire me to keep pushing andkeep fighting until we find a
cure, not just again, again forParkinson's, but for PSP, as you
mentioned.
Actually, if we have time again,there's just so much to talk
about.
There are a lot of individualswho are misdiagnosed and that's
(05:52):
a big problem because you can'tget the right treatment.
Some people aren't diagnosedearly enough but you can't get
the treatment.
We don't know what happened inmy mother's case, doctors, we
went to 15.
I did everything you coulddream of and more.
So I have no regrets, except wedidn't have a cure.
But you know, it's just verytough type of topics.
But there is a light in thetunnel of darkness at the end of
(06:14):
life because I've been able to,you know, meet so many
incredible people.
Even today I got a call from agentleman who has Parkinson's,
not doing well, but I met him onsocial media.
He wrote a book and you know, alot of times people are scared
to meet me or talk because theythink in 2024, you want
something in return.
But when they speak to me, whenthey meet me, when they get to
(06:34):
know me, they're in kind ofshocked, I guess.
But I don't want anything inreturn.
We don't accept money.
The only thing I do accept isthat everyone listening can
please share this and supportyour show, but know that there
are people out there like usfighting for them, and I'll
never stop until the cure.
Speaker 1 (06:53):
I mean, it is just a beautiful journey that you're on
and you're raising so muchawareness.
I mean the fact that youstarted your website with the
hopes that you know maybe threeto five people would see it, and
now I think the number you saidwas 40,000.
Speaker 2 (07:05):
It's secret, which is not secret, but if you scroll
down a little there's a littlecounter.
I didn't even know if someonetold me and it actually tells
you how many times peoplevisited, which is so cool, and
you know.
Again, I don't do it for any ofthat, but I just, you know, I
(07:28):
want people.
The only journey is my favoritesaying which is not good, but
my only.
The only journey is my favoritesaying which is not good, but
my only.
The only journey that breaks myheart is the one that I'm not
aware of, and there's just somany incredible people out there
, like yourself and your family,that just people aren't aware.
And if they were, I guaranteewe'd have more support, we'd
have more people involved.
You're always going to have thecuckoo people I'm not like,
even we just happen to betalking and we.
I was at the unity walk of sucha dream.
I got to meet Katie Couric,which is like a legend.
It was an act.
I got to meet Muhammad Ali'sdaughter, who I interviewed a
(07:48):
year ago, but I got to meet like20 to 50 people who I've
actually interviewed already ayear ago, but we never got to
physically see each otherbecause there's no way.
I'm just.
You know they're all over theworld, so there's no way but
this brought everyone togetherso we posted.
Michael J Fox wasn't supposed tobe there.
He shows up out of nowhere.
I happen to be standing there.
He gave a speech.
He wasn't doing too well, whichwas tough to see, but I love
(08:11):
him, he's a hero of mine.
But you put that on YouTube andyou 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'mlive 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 peoplecan get a feel of it.
(08:32):
So this doofy person and I'm inlaw enforcement and attorney,
so I don't care, but it botheredme a little.
Still, they write for such agood cause.
There's no people there.
I mean the guy, we.
They raised over two milliondollars, I think in one day.
They're over like thousands ofthousand people.
But because I didn't put it onmy video.
Speaker 1 (08:50):
So you're always going to get that.
Speaker 2 (08:52):
that's actually what a future book I've already
written is going to be about.
Is you know, whether it'ssocial media or in your real
life, never, ever, ever, let oneperson, some stranger or anyone
tell you not to do somethingthat your heart says to do, and
in my case it's fight for othersand, like I, said no matter
what happens?
I'll keep doing that.
Speaker 1 (09:11):
I mean you're just such a generous and giving soul
and I mean this definitely is acause that needs as much
awareness as possible.
I mean, like you said, I'mactually up in Canada, but I
mean this disease does notdiscriminate 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 wasdoing okay and the next he just
(09:34):
wasn't.
The decisions that werehappening, there were
circumstances and and we needed,there were red flags that were
coming up, but in those momentsit just it felt like it came up
out of nowhere.
And I know with a lot ofdiseases like this I mean a lot
of times it can it just feelslike it comes up out of nowhere.
Can you speak to that a littlebit?
(09:54):
I mean, I know you'vedocumented this journey with
your mom and you've raised somuch awareness.
What is your?
take on that.
Speaker 2 (10:02):
Yeah, I do want to say I love Canada because I've
actually interviewed Parkinson'sCanada so they actually share
my information.
I interviewed their staff andright now it's a long story fast
In the United States.
Last December was the firsttime in US history we passed
through the House ofRepresentatives the national
plan to end Parkinson's diseaseand sadly but excitingly in both
(10:24):
words we've never had any lawsever in the history of the
United States with people withParkinson's.
Now we're trying to move it tothe Senate.
But my dream is, if and when itpasses and signed to law, I'd
love to see Canada and everycountry take it as a boilerplate
and pass it in your states andcountries, because no person
with Parkinson's should reallyhave to pay for medicine.
(10:46):
It's a disease that they didn'task 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.
On my website on Together forSharing, and what it is is, I
just list people who haveParkinson's but they have some
incredible traits or things Likeone's an artist, one makes
t-shirts for Parkinson's, onejust can't afford the medicine,
(11:07):
so we put them all up there withtheir website.
I have nothing to do with itand I'm hoping people will help
fundraise for them directly,because all the big
organizations are great, a lotof times the little people don't
really see that.
So anyway, I'm always reallyinnovating, trying to think of
ways to help people, and wedon't accept a penny, like I
said, for any of that.
It's just up there to answeryour question.
(11:29):
Can you repeat it?
Sorry?
Speaker 1 (11:31):
That's okay.
Yeah, I just said like it feelslike it's almost sneaky, like
it kind of comes up out ofnowhere and in my dad's case,
because PSP is very aggressive,it was really fast yeah.
Speaker 2 (11:43):
All right, so much I want to talk about.
I don't have the time foreverything, but to answer that I
agree, like I mentioned earlier, my mother had Parkinson's for
15 years.
She had towards the seventhyear she had stiff, like her arm
was stiff, so she had a lot oftrouble but she still was able
to live independently, driveshop, have friends shop, do
(12:04):
clothing everything like aregular person.
Do you know clothing everythinglike a regular person?
But the last four years it feltlike it came out of nowhere
because we were told so manytimes that you don't die of
Parkinson's, you die with it.
So my mother was a young, 69years old and she had no other
medical issues at all, nothing.
So all of a sudden we decidedbecause all the doctors you know
(12:25):
they tried.
I don't blame doctors oranything, because it's not their
fault, it's a disease but theywent to a special university for
a trial.
The same night she came back Idon't know if they drastically
changed her medication, but shewas never the same.
I got a call to rush over toher house at 4 am and she was
moving her furniture out in fearthe Nazis were inside and they
were going to harm her.
I rushed her to the hospitaland they said she could have
(12:49):
died.
She had some kind of a likeattack or something was horrible
and you know, no matter whatfield you're in or class you
take, you're never going to beprepared for that, to see your
loved one, and that she was.
Really it was a mess of anxiety.
Anyway, I found out later shealso had on late onset dementia,
which now, not only withParkinson's, you can have
(13:10):
external tremors, like MrMichael J Fox, and also some
internal, and dystonia, which isthe curling of the toes, a lot
of rigidity, which is stiffness,but really the famous.
I don't think it's famous, butthe kind of some of the
misconception is that it's likeit's the moving disorder.
You, literally, your brain,might say to move, but you're
(13:33):
stuck like literally you can't.
You're like the, you just can'tmove and that's what.
And then some others, like mymother, it's uncontrollable
shaking that she would just moveand couldn't control, which was
horrible.
So you take a beautiful, any oneperson, and you put this
disease that destroys them, andshe lost a sick amount of weight
.
All the medicines weredestroying her gut and her
(13:54):
stomach.
She didn't sleep.
We had to hire staff just towatch 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, thenyou have the dementia, which
brought hallucinations,delusions, which is something
(14:15):
that I can't even explain.
It was just horrible and Iactually 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.
At 8 am my mother calls veryupset and cries that I shouldn't
forget about her and take herout of her place and to my house
(14:38):
.
She believes people are harmingher.
I calmed her down but thesecalls are constant, repetitive
and almost round the clock.
She says that the nighttime aidis mean but likes the daytime
aid.
Yesterday she loved thenighttime aid but hated the
daytime aid.
So you know, if you want toreally be taken deep into it,
you can read the book I've beendoing really well, like I'm
(14:59):
surprised because the hardestthing is with Parkinson's or PSP
.
People aren't aware.
So if they're not aware theymight not even know about the
book.
So my dream is really to getthe book out in the world and I
shouldn't say it and I keepsaying it, but I don't care
about the money because it'sreally more.
I feel like it's moreeducational and so many people
who could benefit from it.
Some people might not want toread it because you don't want
(15:21):
to know.
You know some people.
Just, it's a beginning, amiddle and end of life and for
some people just want to ignorethe end of life when you could
plan for an attorney, power ofattorney.
You can plan for will.
You can plan for so manyimportant things housing that if
you just wait that coulddestroy a family and become 10
times worse.
But that's a different world toget into.
(15:42):
But again, to go back to yourquestion, I mean it came out of
nowhere.
I wasn't prepared, I'm stillnot in shock, and one thing we
mentioned earlier is the numberone rule in caregiving is to
take care of yourself first, soyou're no good to your loved
ones.
And I didn't do that because Ijust didn't want my mother to
feel uncomfortable for somereason.
When I was by her side she wasokay, like she was.
(16:03):
I mean, she saw the you knowdisease, but she was, she felt
safe.
And now today it's an advocate.
I'm still not following thegolden rule because, like we
said, if I let's say I'm notdoing too well today, I'm kind
of sick and I didn't want tomiss this because I feel like,
if we even reach this one personout there and then I wear a PSP
and Parkinson's and thendementia, that we've changed the
(16:23):
world.
So you have to sacrifice sometime time.
But I'm struggling personallystill today with how much.
And we went to New York theother day for one day, which was
not an easy trip flying.
I didn't sleep in the hotel atall, 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
(16:45):
and then went right back towork and you know you have to
juggle things, but to me this isreally like my life's work.
I feel like there's a fire inmy heart and I can't stop till
we find a cure, because everytime I hear somebody like you
who lost a loved one or I meanmr michael j fox, I like when I
met him a month or two ago, itwas just us and I was in a
(17:06):
special area with a lot ofpeople, 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 waslike amazing.
But at the same time I went intothe bathroom after I fell apart
and I'm 62, 200 pounds a lawenforcement, but I saw my mother
a little in him, but he'sstruggling and now he could
barely walk.
He was in a wheelchair recentlyand I hate seeing that, so
(17:29):
that's what drives me to notgive up.
But then again I'm battling.
I could probably write a bookabout that, but I'm tired of no
more books.
Speaker 1 (17:38):
It is important.
I mean I will advocate for youfor the self-care.
I mean it really is importantto just take pause, but I know
when you have, like you said, afire in your heart on a cause
that is just so needed.
I appreciate your drive.
So thank you for doing that andthank you for spreading so much
awareness around this.
(17:59):
I'm very excited You'verecently 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 wesign off and we can let you go
rest, because I know it isimportant You're actually
helping me and your viewers andit means the world to me to have
this time.
Speaker 2 (18:16):
I hope this is really not just about a conversation
that you know you do a show andyou say goodbye and you part
ways.
This conversation does reallyhave to continue until we find a
cure, because until we do westill have a lot of work to do.
So I don't have Parkinson's.
We're not really sure howsomeone gets it and that's
another podcast, but I feelpretty strongly.
It's environment.
(18:37):
My mother had a nice home butshe had mold, she had termites.
We had weird people spray.
Who knows what they used backthen.
It's just frightening.
That we even have pesticides inthe supermarkets is frightening
.
I found out after interviewingan expert in parkinson's, a
professor, a doctor andprofessor.
He said you can actually getparkinson's possibly from the
cleaning.
(18:57):
So when you dry, clean itbecause they're using horrible
chemicals.
So he was telling me this whileI had chemicals on my jacket.
I wanted to burn the jacketwhile we were speaking.
That was interesting, butanyway.
So I don't have parkinson'sright now.
We don't know future whatever,and I don't.
I'm not, unfortunately, acaregiver of someone alive with
(19:17):
parkinson's and that kind of gotme upset because I do feel
sometime now you have the world,they've really opened their
arms to me.
But there are individuals andorganizations that still, I feel
, don't keep us in theconversation.
And I say us because you know,unfortunately you lost your
father, but you know it's likethey concentrate which I agree
on the cure and for people aliveand their caregivers.
(19:39):
But you know we have 10 millionor 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 nowfor people like us, because we
still have a voice.
My mother and your father stillmatters and I see a lack of, uh
, something missing for peoplelike that and I feel if you
brought those millions of people, families back to keep their
(20:01):
memories alive, what a force wewould have, even 10 times
stronger.
But you know they just don'thave the resources of time, I
don't know.
But so that leaves me in theworld.
So I went to, I tried to findsupport groups because I do
think it helps virtual.
I went to some with peoplediagnosed.
I didn't fit in so I didn't sayanything.
It was odd.
(20:21):
Then I went to caregivers, butthat was for people alive.
So again, I'm not going to sharemy journey and things because
then they'll be all mad at me orupset, because I still hear
people say to this day, like youknow, even on stages they say
you don't die, but you die withit.
My mother maybe she didn't diefrom Parkinson's, she died from
all the Parkinson's medicines orsomething, so it was because of
(20:41):
Parkinson's.
So anyway, I'm not a scientist,so I don't get into all that,
but I could only speak on myjourney.
Also, there's no cure becauseeverybody's so different, which
is also a complicated thing.
What happened to my mother?
She had late onset dementia.
It doesn't mean someone elsewith Parkinson's will even get
dementia.
So anyway, I found myself kindof grieving again, feeling like
(21:02):
I didn't count, I didn't matter,and I just thought about, you
know, starting my own thing andthankfully, a group in Canada
which is near you, probablyLaura, she was incredible, but
it's called PSP Awareness andthey're a group in Canada but
they cover the world and wetogether decided why don't we
start something?
So we started a support group.
It's once a month for an hour.
(21:23):
I think it's like the thirdTuesday, but if you go to
Together for Sharing.
Click About Us.
The support group's right there.
It's all free.
It's confidential.
But it's for anyone who's lostany loved one due to any disease
so confidential.
But it's for anyone who's lostany loved one due to any disease
.
So psp, parkinson's, dementia,alzheimer's everybody's welcome.
Again, it's completely private,confidential.
(21:44):
Luckily we've had a nice group.
I don't really want it to betoo many people.
If you don't have, if you havemore than like few, then it's
you don't get to talk.
So it's just an amazing.
Last month I remember two peoplehad lost a loved one due to PSP
and one with Parkinson's, andas he was talking, my heart was
shuddering because I'm likeyou're in the right place, you
know, because we have a lot incommon, unfortunately.
(22:06):
But it helps to talk aboutthings and that's why I really
enjoy these talks, because youknow it still helps.
Even looking at the coversometimes, I found myself almost
very sad, even though it was myone of my happiest moments in
my life.
That was the picture of mymother and I, and we were
actually dancing at my wedding.
(22:27):
So it was an incredible daybecause I finally got to marry
my wife, who's my best friendnow.
She's been my support of thewhole chapter from my wife and
the book and my children and mymother used to love like sunday
morning blowing bubbles in thebackyard with the kids and I
often walk by the backyard anddon't see that anymore and it's
you know, sorry, it stinks.
(22:48):
I don't want to curse on yourshow, but I'm from brooklyn
that's okay, I appreciate it,nothing we couldn't bleep out
anyways.
Speaker 1 (22:56):
But I know I and that feeling it does it.
I, I don't know, with grief, ifthat feeling will ever go away.
Speaker 2 (23:04):
I mean, it's to be determined, I guess the one
thing is uh, parkinson's mighttake a love, one PSP, but it can
never take the memories.
And that was my favorite memoryof my mother and I, because in
that moment, even three minutes,parkinson's didn't exist.
We joked, we talked, we laughedand we loved, and that
symbolizes her life.
And that's why this book is soimportant, beyond any selling
(23:26):
things, because it'll keep hermemory alive forever, beyond me,
beyond my family.
And I mean just today somebodyincredible I don't even know why
I did it, but he took a picturewith the book and put it on
LinkedIn and I just wasscrolling and I see my mother.
It was a great feeling.
That was kind of worth it allfor me, and I hope it goes viral
(23:48):
and other people.
I 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 outthere.
And you know, I just thinkthere's so much more in there
that we just wouldn't have thetime to get to.
Speaker 1 (24:09):
Yeah, and that's okay .
We'll make sure to include alink for the book in the show
notes so that everybody who iswanting to get a copy that will
be able to.
One last question, because youkind of touched on this and we
don't really know whereParkinson's or PSP comes from.
But it's interesting to me thatthe focus is so on finding a
(24:32):
cure when we don't even knowwhere it starts In your research
and your advocacy.
Do you have any insight ontothat?
Speaker 2 (24:42):
Yeah, I don't think it's genetic.
I feel it is social, not justthe surroundings, like the
environment.
So the water we drink, the dryclean, the food we eat, the
pesticides bug spray, I meanthere's a thing called Paraquai
that was banned in China, thepesticides bug spray.
There's a thing called Paraquaiwhich was banned in China but
not in the US.
(25:03):
I'm not sure about Canada.
That's poison.
We need to get legislators, weneed to get more involved.
The other problem is if you wantto be very healthy, which you
should, so diet is big, exercise45 minutes a day, even if you
don't have Parkinson's, you haveto do that.
We know these things are outthere but we still, you know, do
it, which is tough.
(25:23):
Like you go, you got to get,you got to eat, so you go to the
grocery and then when you talkabout organic, which is the best
, that's very expensive.
Some people just can't affordit.
So it's a society where we cando the things, but we still,
some people, can't because ofhow things are regulated,
because of the high costs.
So all these things need to bechanged.
I don't know if they will orwhen.
And then also there's a famouslawsuit called Camp Lejeune,
(25:44):
where people from the militarywere getting Parkinson's and
dementia because they believethe water and the contamination
in the military camp.
So there's a lot of cases outthere, but no one's.
You know they're not doingenough about it.
So we have to make ourselvesaware, not just about the
disease but about thesurroundings or environment, the
(26:05):
stress.
Speaker 1 (26:06):
I mean I'm pretty sure there's a study out there
now that is saying that more offirst responders are predisposed
to Parkinson's because of thehigh stress environment and so,
yeah, I mean bringing thisawareness.
I appreciate this conversationso much.
You guys make sure we'll putGeorge's website in the show
notes as well as a link to hisbook, so you guys will be able
to find more information out.
(26:27):
Spread the word.
I mean it is still fairly rawfor me losing my dad at the time
of this recording just a couplemonths ago, and hearing your
journey and hearing more of yourstory.
I mean that loss, you know, wejust don't know when that'll
start to alleviate.
(26:47):
Sorry, I'm getting a littlechoked up, so we will.
Speaker 2 (26:51):
I don't.
I usually end everything withthis message but don't fall
apart, please.
This is for motivational, butif you don't mind, I want to
just say this to you and theviewers but we love you, we
support you, we care a lot aboutyou and you're never alone.
I will advocate for you andtogether I feel our voices are
just so much stronger.
And I always say I'm justgetting started, because,
(27:11):
meeting you now, while we'retalking, all these amazing
thoughts and things, now I'mready to go out there and keep
fighting for you, for yourfamily and for everyone out
there.
And you know, unfortunately,some days, like I said my, I'm
having major spine surgery, athird one next month, but I
guarantee from the bed I'llstill be fighting for
parkinson's awareness because,uh, no matter what I have or
(27:32):
pain, it's nothing compared towhat 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 workingtogether because our voices
together just so much strongerwe might.
You know I'm only one son.
One person lost his best friend, mother.
Look what I can do and if wejoin to you, with you, like 10
(27:54):
other people in your audience,oh my gosh.
We could crush these diseasesand them forever and maybe talk
about something else, like theweather outside.
So until then, we have to keepfighting and I'm going to be
right out there by everyone'sside until we end this.
So again, I'm so grateful foryour time and we send our love
to you and your family and, likeI said, I'll never let your
(28:14):
father be forgotten too.
Speaker 1 (28:16):
I appreciate that, George.
I'm very grateful that we wereable to be connected and that
you were here and thank you somuch for that lovely closing
message.
And thank you, guys, for tuninginto today's episode where we
help you conquer the chaos, oneday at a time.
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