May 15, 2025 • 56 mins
In this episode of ‘The Aging Well Podcast’, Dr. Jeff Armstrong is joined by Samuel Simon, also known as “Dementia Man.” Sam shares his personal journey from being a public interest lawyer to becoming an advocate for those living with Alzheimer's disease. He discusses the impact of his diagnosis, the importance of advocacy, and the need to change the narrative surrounding cognitive decline. Sam emphasizes the value of living a meaningful life despite the challenges of Alzheimer's and highlights the importance of support systems, such as cognitive navigators, in enhancing the quality of life for individuals with cognitive impairments. In this conversation, Sam Simon shares his personal experiences with cognitive decline, the challenges of caregiving, and the emotional journey that accompanies these experiences. He discusses the importance of finding meaning and joy in relationships, the financial burdens faced by families, and the need for policy changes to better support those affected by cognitive disorders. Through his storytelling, Sam emphasizes the significance of living a meaningful life despite the challenges posed by cognitive decline.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
You see that? Yeah.
It is something that was gifted to me by someone who saw my
show. It was after.
It's a woman's husband's self-image of memory loss.
But it was a week after he passed away and had seen my show
and she wanted me to have it. And I just love to tell that
story. Our guest, Samuel Simon, is a
(00:28):
man who has spent his life fighting for social change, from
his early days as a founding member of Nader's Raiders to his
decades of work shaping Internetand telecommunications policy.
But in what he calls the 4th actof his life, Sam is tackling
perhaps the greatest challenge yet living with early stage
Alzheimer's disease. Diagnosed in 2021, Sam refuses
to let cognitive decline define him.
(00:49):
He's an award-winning playwrightand actor, using theater as a
powerful tool to shift the narrative around dementia, a
term he passed fortunately rejects.
His autobiographical show, Dementia Man and Existential
Journey, offers an unfiltered look into the patient
experience, the challenges of our medical system, and the
urgent need for reform in neurocognitive care.
(01:11):
Sam is a storyteller and advocate, and as he proudly
calls himself, a troublemaker. Today we will talk about his
journey, his mission to redefinelife with cognitive disorders,
and what we can all learn from his unwavering commitment to
living fully and aging well. Let's begin by having you tell
us a little bit about yourself and your path to becoming
(01:32):
Dementia Man. Well, thank you, Jeff for having
me. And you know, I'm it's a weird
story in some ways. I was born and raised in El
Paso, TX, of all places, and very middle class, lower middle
class. My dad was a traveling salesman.
(01:53):
And then the play, I say I wrotea play about this.
I think Willie Loman, I don't know if you remember the depth
of a salesman, but he would yeah, he my dad would get in a
car and we would drive even all the way out to the West Coast in
an UN air conditioned Chevy. They take the back seat out.
(02:14):
He puts all the people forget their this was he did in the mid
40s to the late 50s, early 60s. They air traffic wasn't that big
there wasn't the Internet. So salesman went to big regional
conferences or in my case my dadwould go to small towns, take
out his bags of children's and infants Ware and I grew up
(02:38):
there. Not sure what I want to do with
my life. Ended up getting very very
young. We were Susan was 20 I was 21
and went to law school and endedup unlikely.
I my parents wanted me to stay in the Army and I actually have
a brother-in-law. My oldest sister married a West
(02:59):
Point guy who retired as a MajorGeneral and they said you know,
work for the stay in the Army and work for the governments.
It's safe because they've grown up in the Depression.
Anyway, I'm telling you too muchanyway and go to law school and
but and as a kid, it's in this Isort of became a troublemaker
(03:19):
even as a kid, good trouble. And since I I got mad at the
City Council of El Paso and I would 14 went down and told them
they were the curfews were unconstitutional and they
shouldn't have a 11:00 PM curfewfor kids something and under
anyway and and I'm going to law school and I did I it feels like
(03:40):
it's almost a gene of when when something seems unjust, the
temperature rises in me. I you know, I it seems almost
something I can't control. But in an unlikely event, one of
our classmates was a, you know, Ralph Nader people.
It's been a while. He's still alive.
He still does a weekly podcast. Ralph Nader was just getting
(04:02):
started. He wrote the book Unsafe at Any
Speed. And because of him, you know,
have airbags and seatbelts and all that stuff.
But he was just starting out. A Austin law firm, somebody had
worked in, in the summer, a Nader's Raider, what they called
him and came back to our class and said Ralph is hiring for
some full time lawyers. I did have a military
(04:23):
obligation, but he had come up anyway.
And I spent my first year working for Ralph Nader, as in
Nader's Raider kind of public interest lawyer, one of the
first Public Interest Lawyers. And I sort of had a career doing
that. So I'd like to call myself a bit
of a troublemaker, but I'm, I ended up doing a public affairs
company in Washington, DC. You know, I even have a son now
(04:47):
who's in this going to be 55 andhe's a member of the Virginia
Legislature. We're we're troublemakers.
So I, you know, I, I wasn't an actor.
I wasn't a performer. We didn't, you know, they
didn't, I didn't see any dementia in my family.
We had some folks. I have an aunt, by the way, I'd
(05:09):
love to brag about her, who did go into nursing home later in
life in 1920. She was the 16th woman ever to
be a lawyer in Florida. We just knew it knew family.
We're troublemakers. All this and two things begin to
happen. I, so I, I had a career.
(05:30):
So I started with Prof in 1970. Now we're talking about about
2006. I had built a public affairs
firm. I sold it.
I was able to, I was actually became a senior fellow for a non
profit in New York. I actually commuted every other
week. But I started doing some theater
improv. I love improv.
(05:52):
It taught me, I encourage anybody who is interested in
even even the old people like me.
I would be 80 this year. The most important thing I think
I've learned in my life was improvisational theater and in
aging. And in the certainly dementia
world, there is teepa snow. I don't know if you know the
name. She's a woman who specializes on
(06:16):
how to work with people with dementia in nursing homes, and
she uses improv strategies. A Yes.
And if somebody has serious dementia and they say we're not
home, even though they are, you can't tell them they are.
You say, yes, of course you're home of course you're not home.
(06:37):
Let's go hang in the car, drive around the block and go back.
We're home now you can't anyway.And so I used I fell into a
theater because my wife and talked about aging these
happens. My wife in around 2000 was
diagnosed with advanced breast cancer and the doctors pulled me
over and said get ready. She's not going to make it.
(06:57):
No, she did unlikely a survivor.And we went through that process
of getting ready for somebody, you know, the one you love most
in the world. And she survived.
And it took me almost nine yearsto realize that I hadn't dealt
with that issue. And I ended up was doing some of
my improv work and I discovered that I had a story to tell.
And I there was my first play and I because I happened to be
(07:19):
going back and forth New York, I, I wrote a play called the
actual dance loves ultimate journey from the care partner
caregiver. He talked about the aging
journey. A whole lot of us are either get
sick and we have somebody care for us or we have our partners
or family members and they beginto get ill and we care for them.
It is almost inevitable roles for many, many people and I was
(07:45):
a care but I call love partner. That was my name for it.
I came to understand that there are two parts of that.
There's a care partner where I actually had to give her care.
I had sometimes I'd give her shots on her stomach and learn
how to do that. My heart was breaking.
So we're a love partner. So we have those two parts of
that role. She gets well, I keep work doing
(08:06):
things in New York and back and I was I wrote my play about that
journey I was doing performing my play and all of a sudden I
start driving on the wrong side of the road every now and then
and all of a sudden I can't remember things.
I start by getting lost. I can't remember things.
My internist when I complained and it was a couple of years.
(08:29):
I was complaining. He said, Sam, you're just an
over educated man overreacting to normal age.
And so we kept doing that. Then I had anyway why I'm
getting into the subject of the play.
But anyway, I, I discovered thatit was early stage Alzheimer's.
(08:50):
We can go in a little bit more detail.
And that's where we are now writing a play and performing a
play with Alzheimer's disease. You get a diagnosis of a
terminal disease. And you know, the first question
is what what do I do? What It's so tempting to curl up
and go into your room and don't come out.
Actually, my friend, I'm not oneof my first performances.
(09:11):
Somebody in the audience, we do discussion afterwards.
Somebody, one of the first people who spoke, I can still
see the woman stand up and say my husband was diagnosed and he
came home and he went in his room and he didn't come out.
It's her words and that was figurative.
But and so that's my story. I'm sticking to him.
We can talk some more about the play, but if in so many ways I'm
(09:33):
an unlikely, I was as Ralph Nader, advocate public affairs
guy in Washington. And did you know, I got a little
publicity, You know, when I was doing that back in the late 90s
and early late 90s, I was on Face the Nation, Good Morning
America Today show. He was even on the Oprah Winfrey
Show once. And my son called me a minor
(09:57):
celebrity back then. You know, I just, yeah, I could
never imagine being here doing this.
I don't know how you know stories of growing up and
becoming something you never imagined.
So it seems like when you got your diagnosis you did the
opposite of going into your roomand not coming out, but is that
(10:17):
the case? Just the opposite.
Well, I, you know, I, I'm talking to play and I talked
about my life. I started troublemaker.
I'm I had a background. I worked, you know, very
visible, very visible. I even as I'm what are you doing
the Ralph Nader work in public? You know, I had taught a couple
of things. It's still probably nice day.
(10:40):
If you're in a starting in a newfield and you're trying to be an
advocate, raise your hand, be noticed, talk.
And you know, like I said, at 14, I'm down to the City Council
meeting telling them that their curfew was unconstitutional.
And I always had that personnel.I've been loud a bit.
(11:01):
You know, I've been, I've done that a couple of times.
I don't know if I need to go in a couple of times in my life
where I'm all of a sudden the loudest guy in the room.
And often that way they handle it is all right.
You be president of the board oryou take on that test.
So, and I was doing when I was diagnosed with ultimate, I had
been doing the play about Susan,about being the care partner.
(11:24):
And so I had developed a theatrical cohort.
I call him a, you know, there's this big conference every
January, New York. They usually don't have people
like, you know, again, I went toit every year for about 5 years.
I had other actors who knew my work, knew I play.
I started telling people that myfirst diagnosis was mild
(11:45):
cognitive impairment known as MCI.
And that was in 2018. But until 2022 that I got the
Alzheimer's, why I was mildly cognitive impaired because I had
early stage Alzheimer's and theywere telling me since write
about it, take it, put it on thepage and on the stage.
That's what actors do or particularly solo actors.
(12:06):
It didn't register at 1st and mild cognitive impairment wasn't
all that bad. It was explained a few things of
what was going on. The Alzheimer's was a little bit
harder. We it took a minute, it took a
minute and we had, we have two adult children.
Of course, I'd love to say 1's alawyer and a legislator.
No, but one's a lawyer. The other one therefore has to
(12:27):
be a, of course, she's a pediatric dentist, a doctor.
And we talked to our children and, you know, I guess I didn't
know what else to do. In some ways I didn't want, and
I had the experience of writing about an existential matter.
You know, I mentioned I was working with the, I worked part
(12:48):
time in New York every other week.
It was with the social justice ministry, a nice Jewish boy.
I went and worked with the social justice ministry, the
Collegiate Church of New York, the oldest church in America.
And the friend had taken it overand they were, we were using
theater and art and music aroundsocial change.
(13:09):
And I had experienced and saw, and I still believe now, and now
I believe people's people can bepersuaded by emotion more than
theory. You know, you can write this
policy paper and send it to somebody and they'll read it.
But if you can give them an opera or a show or something
(13:30):
that hits them in their heart, they'll think differently or
they'll maybe reconsider. And so I hadn't seen that and
done that. I had this encouragement and I
had people I'd worked with aboutthe other play and it wasn't, it
wasn't again obvious to me. I'm learning now.
(13:50):
I, I'm, I've entered this whole the whole universe of people
with cognitive decline cognitive, you know, the baby
boomer generation and their children.
It's huge that are being confronting cognitive or just
late in life diseases and we're living with the Alzheim Dr.
(14:15):
Alzheimer's narratives and people don't know what that is.
You know, it's almost a Frankenstein idea of what
somebody would, you know, reminded when we growing up,
cancer wasn't mentioned as a word.
It was the C word. Now we have the cerebral word
dementia, but, and it is based on the idea that there's sort of
(14:36):
this, this late stage version ofthe disease of the person
sitting in a nursing home without kind of lurk on their
face. And that is late stage.
My neurologist when I got diagnosed with Alzheimer's said
it could be 5 to 10, maybe even 15 years before I got a lot
worse. I'm seven years into it and I'm,
(14:57):
you know, beginning to feel it more.
I know my I know a clock is ticking, but there are so many
of us in these earlier, earlier stages.
And if I have anything wonder it's possible live a meaningful,
purposeful life with this disease.
And then you may know there's a counter narrative and I feel
like I'm just talking, talking about.
(15:19):
That's what you're here for. But one of my motives actually
was I was exercising one day listening to a podcast.
No, maybe like a good podcast, but the guest was a person who'd
written a book. I'm not going to give them
credit. I don't always talk thing to be.
But the book was about how this woman's husband was diagnosed
with early stage Alzheimer's, mydiagnosis.
(15:41):
And she quotes him as saying, I don't want to die, but I don't
want to continue to become a lesser and lesser person.
And the rest of the book, it washow hard it was to get for them
to get to sorts of them so he could kill himself with poison.
And there is a narrative in support of that choice.
And I want to be the opposite boys, that life with this
disease is worth living and we can still continue to be leading
(16:06):
a meaningful, useful life and dothings.
And there is a there's a whole new movement.
I've just learned this and I'm making connections with them in
senior living homes and in senior living around the
Montessori method. It's like, oh, I thought that
was for grade school kids in my the rich side of how in
(16:27):
Montessori, which I did not understand, is about working
with people in this instant in grade schools and schools.
It's see a child's natural inclinations and work with that
lead with, you know, if they're a good typist or if they're a
good actor or if they athletic teach them through that and let
(16:47):
them develop their own strength.They're beginning to apply that
idea to people with dementia, with cognitive decline.
I was talking to somebody on thepodcast, just my own podcast
with somebody and they were joking in because they were they
were doing it, they were familiar with this.
(17:07):
He said, well, if you came to our place, we would put you in
that in charge of the drama club, in the memory unit.
They would have a drama club even for those.
And So what I hope I can be partof is helping people reimagine
this journey, even with cognitive issues.
And you know, so that's sort of my story at the moment, what I'm
(17:30):
trying to do. You're on the West Coast or but
your podcast is everywhere, right?
Yes, yeah, we're, I don't think on almost every continent one or
two people, but yeah. You know, are you familiar with,
there's a big conference coming up in April in Florida called On
Aging. No, I'm not familiar.
(17:50):
Yeah, I'm going to be there, that's all Mates, Maybe people
here, they could have. I had never heard of it.
It's called On Aging and I'm going to I have a room April
20th at 5:00. If you if you, if anybody
listens, is going to be at the on aging come conference, come
say hello. But this, you know, that's more
(18:13):
this is what's happening to America and to and so, you know,
it's a huge cohort of and I I want to be part of this movement
that you can live even in impaired ways, even as your own
health changes. I don't like the word
(18:33):
deteriorates changes. And you can find joy, you can
find meaning, you can find purpose, you can help each
other. You can be in a drama club and
have maybe even mid stage Alzheimer's.
But anyway, so that's, that's myenergy and that's my story.
I'm sticking to it. Yeah, we don't ever hear of
(18:55):
people talking about middle stage Alzheimer's.
I just realized that, you know, it's like either early stage or
late stage. There's never talk about the
middle stage and. And it is a process and it is a,
it is a, you know, it can changequickly on the sometimes and
sometimes it's slow. There's a consensus right now
(19:17):
with my wife and my neurologist that my doing this work is
slowing down the progress that my energy and working at this,
by the way, I was looking to seeif I had it.
I don't have it with me. I carry the script in my hand,
but I can't memorize. I, I memorized the first play, I
would boom, boom, boom, an hour play memorized.
(19:39):
There was no problem. And in fact, one of the the
symptoms and during the pandemic, I was still doing the
other play, the actual dance, but I was doing it from home.
Now I was had my phone and I wasable to perform over Zoom for a
lot of the the breast cancer clubs around the country,
(20:01):
Gilda's clubs. And it was actually fortunate
why Susan, my wife, would sit onthe side.
She would have the script, but usually that wasn't an issue.
I started missing my lines, forgetting lines so she could
cue me up from the side. Now, even though I carried the
script on stage. So I refer to it.
I refer to it more than I think when I see videos of me on stage
(20:22):
when it's done. So I'm looking down too much.
But anyway, so now Susan carriesthe script and sits in the first
row. I call it my cognitive
navigator. And you know, there's an there's
a big advocacy piece of my work,by the way, and I can transition
to that because I want to get rid of the word Alzheimer's.
And there is a movement there isa delete the D word or get rid
(20:46):
of the D word there. I did not know this.
You know, federal government cannot use a word retarded in
federal documents that other Congress passed a law that says
you can't do that. There's a group of people headed
by this gentleman out of Iowa. We're bringing together a
lobbying effort says, and you can't use the dementia word You
need to use the medical world has even changed in it.
(21:09):
And then it's called the DSM 5, which is the neurology book on
out of classified diseases called neurocognitive disorder
major minor 2013. They changed it.
So I I'm with them. I want to get rid of the word.
I used to be active in the disability movement.
I was on the board of directors of the World Institute on
(21:31):
Disability for 15 years. I was even vice chair of the
board months and that. And you know, America, right?
You have curbs, curb cuts for people with wheelchairs,
millions of them. You have ramps into every public
building. You have Braille on the elevator
(21:54):
doors. What do you have for me right
now? Not anything.
And the ADA, the Americans with Disability Act was amended in
2018, No 2008 to include cognitive disorder
accommodation. So I, I want businesses
particularly into interfacing with the public to have a, a
(22:19):
cognitive disorder desk or a, you know, I'm going to get
something here real quick and I'm back.
I don't know if you've seen thisbefore.
You can get it in an airport if you have a cognitive store that
has hidden disability. And in Europe at airports and
train stations, they have a deskwith big yellow flowers.
So if you have a disease and you're there, you have a
(22:40):
cognitive disease, you can go upand get help.
Increasingly at airports now youcan get these and we have we had
an experience where I was traveling to Iowa for a
performance. We were coming back.
I was wearing this as we were inthe airport.
Susan and I put my bag in. I move forward.
Susan's my wife's behind me. The TSA agent sees me, looks at
(23:04):
her say are you with him? She says he says yes, yes, I'll
take care of your bags. You go stay with him.
So they know and but what about when I go?
I can still go to the grocery store, but it's going to take a
little longer. I won't remember where anything
is anymore. I'm going to need a bit of help.
So again, in this Iowa community, they were working
(23:27):
with grocery stores to have carts with a yellow sign with
flowers on front of it. And the checkout line that, you
know, right now there are there are still a few checkout lines
left. And you know, one who could have
the sign so that you don't slow up everybody else and they could
take time, but they know that you they don't get there.
You know, the person helping doesn't get frustrated.
(23:48):
But you could do that almost anywhere in any environment
because just as we forget that there is mid stage, I can stay
more engaged in the community for much longer if there was
just a little help. And so that that's part of my
advocacy. I want cognitive navigators as
available as curb cut. I want to get rid of that the D
(24:12):
word and I'm the strong voice against the company suicide.
I'm going to talk a little bit more about that as we go.
But I teach a course in exercise.
It's pathophysiology and exercise.
And so you have just informed meI need to stop using the the D
word. And for some of our listeners
(24:33):
that are listening to this as opposed to watching it, they
didn't see your air quotes. I use air quotes a lot too.
So I always have to express thatI'm using air quotes around
dementia. And I like the the neuro
cognitive companion or assistant.
What was the term you used there?
Navigator. Neural Navigator.
I get starting adopting that a little bit more too and really
(24:54):
expressing to my students how important it is because I have a
lot of students that can go on into physical therapy, physician
assistant programs, occupationaltherapy, They they and I.
And that's why I love teaching exercise science and having
people going into professions like that because they have a
little bit greater training in regards to kind of the social
(25:14):
interactions. I teach my students that, you
know, all conditions that we're dealing with are biomechanical
psychosocial. And if we don't address that
psychosocial piece or understandthat there's more going on in
the persons life than just this condition or their need for this
particular exercise or whatever it might be, we're going to miss
them dramatically. And I, I love these terms.
(25:35):
I'm learning a lot to. Cognitive navigator.
It's cognitive shorthand. CN my CN my cognitive navigator.
Sorry, I misstated. It Oh, that's OK.
You're allowed to misstate stuff.
I misstate stuff all the time. So.
So what were some of the biggestchanges you had to make in your
(25:55):
daily life after your diagnosis?Well, you know, a couple of
things are going on. One of the biggest issues was
driving. Now I still drive, but barely
alone. The risk of getting lost is is
moderate, but increasingly and Iworry about it.
And so I actually pushed my neurologist to give me a
(26:20):
prescription to be tested by a vocational training organization
and they do that. I was should have done it
earlier. But they have a system in
Virginia and I suspect every other state that I'm going to
put office on movement one second.
OK, sorry about you. Maybe one of my accommodation.
(26:41):
Alexa, just remind. Well, I'll let you listen to it.
Sam, here is your reminder. Take my pills.
So I have Alexa remind me every morning to make sure I've taken
my morning medication to be current.
I need to add the evening because I forgot to take my
pills last night. I hated it.
This is pisses me off because not until this morning I went to
(27:04):
take my morning medicine and there's some pills from last
night. I didn't do it again.
You want to know one of the things that that's real time, my
friend, real time. But you know, so driving, I took
the test. I had to take it twice.
I surprised myself. They said you can continue
driving, but on distances, make sure there's somebody in your,
(27:27):
your car finding directions. You know, I, I don't say first
remembering where I left things,put my keys because you know,
the, you say that and the first thing is, oh, I've done that
too. We've learned there is a
difference. And somebody suggested to us off
being Susan to me. And the difference between me
and my wife is she can retrace her steps and find it.
(27:49):
I can't retrace my steps. I don't, I won't remember where
I put my keys or my wallet. I don't know where I won't know
where I had been. I so I can search everywhere,
which is what I end up doing, except we have set places.
We have, this is where it belongs.
And Susan works and I mean, and we change, we accompany even,
(28:09):
you know, again, because it's socurrent, because it's happened
today. Literally Susan realizes my wife
that she has to affirmatively remind me to take my evening
pill, that we can't just assume that it's happened, you know,
and I don't. And the frustration means I
don't understand how it happened.
They're sitting right where I brush my teeth right next to it.
(28:30):
And I did that. I went through everything.
I went to my but I didn't and I don't remember why I didn't.
I mean, it's why wouldn't I? They're there.
I do it every night or almost every.
And so again, the difference between the occasional I forget
this and me is it there's nothing there when it happens
and it and so these are some of the the symptoms and you know,
(28:56):
traveling. I used to, like I mentioned
earlier, I used to travel to NewYork every other week.
I'd go up on a Monday, come backon a Friday.
I'd stay at a hotel, I'd get on the train and go alone.
Travel now has built such anxiety in me that, I mean, it's
hard and we have to travel a dayearlier.
(29:17):
Like when I perform, I travel the next day earlier just to get
over the anxiety that builds andjust traveling.
And these are all new things. And I don't read nearly as much.
I used to read a book a week andagain, it's something you
notice. It's not like intention.
It's also I'm not doing it. You know, I love to read, I love
(29:38):
stories. I just don't know why it doesn't
happen. But I can't perform my play.
I love doing my play and again, it's not memorized it.
I have to be on book and the time like the clock is ticking.
We had to make an affirmative decision.
So I started in the July of 2023and through half of 23, all of
(30:02):
24, and we had to make a decision.
Should I keep even trying for 2025?
I like to book things and then all of a sudden I can't do it.
We feel I can get through that, but we have to be alert and
aware every, every time. And I look to others to notice.
By the way, I'm not the best judge of my own cognitive Helen.
(30:25):
And so that's why I'm very, I'm very lucky, Susan and I.
I'll tell you, I used to do a podcast from my granddaughter
because she complained that grandpa always went deep.
So Grandpa is about to go deep. You know, there's something very
fortunate about our journey. You know, I, I had to get ready
very actively to hold Susan. I thought she'd take her last
(30:47):
breath. And now we're, our roles are
switched and not imminent. But this is not curable.
And so I think we both would agree, we both thought we there
is a gift in being able to be ofcomfort and hold somebody you
love as they face the end of life.
And it is a gift to each other. It's not just one way.
(31:09):
Now, it is not easy. The cared partner journey, and
I'll talk about that in a secondis is difficult, but they're
underneath it. And then just talk to somebody
else. What bigger gift to be able to
let somebody know as they take their last breath that they're
loved, they're loved to their core.
What a bigger gift can you give to anybody and what gift can you
(31:31):
give to allow that person to feel that way?
It's a mutual gift. It's not easy to get there, but
I think we're lucky that we found that.
You might call what that Susan almost died from breast cancer
and I'm an incurable disease now.
Well, what's lucky is that we can live the life with it in
this way and that's if anything I want to be able to offer is
(31:55):
these ideas to others that is unhappy if we may be as shocking
as it is at the moment. If there is the possibility of
finding meaning and joy and loveparticularly and have to be a
spouse to be a parent, you know,a child to a parent, you know
what a gift to be able to do that to your mother or father.
(32:16):
Like, I know there are all sortsof other things out there and
other relations. But anyway, you got me and I
forgot where I was going. Going deep, like your
granddaughter said. Yeah, Grandpa goes deep.
So what kind of reactions have you gotten from your audiences,
both from those experiencing cognitive decline and from their
(32:36):
loved ones? Well, I've learned some.
This is sounds odd. I've learned I I discovered this
when I did my first place. I learned from first of all my
own performances. I understand my own story
differently and I learn from audiences.
And one of the first things I never anticipated and still is
one of the frequent first comments is thank you, Sam.
(32:59):
I've always wondered what my father, uncle, whoever, how
their mind might have been working.
Now I think maybe I understand it a little bit.
You know, I don't think we've talked about yet the biggest
cognitive experience or maybe I should stop and mention because
the thing that got everybody excited, or I'd say excited
(33:20):
concern, was when I began to develop a phenomena.
And it's sort of the theme of the play that the entire right
side of my brain when I started trying to remember things.
I'm going to have like 2 tiny eyes in the front of my forehead
inside but turn to the right. This sounds crazy.
I where am I going tomorrow? All right, where am I going
(33:42):
tomorrow? Eyes, right?
Look for the answer. And instead there's like outer
space. There's an infinite black place
that I literally fall into looking for that answer and then
I'm back. And so that Doctor Who said, oh,
you're just a over educated man overreacting to normal aging.
As soon as I told him about that, that's when he got me to a
(34:03):
neurologist. And so the play is about
disappearing into Infinity. I should have been.
Yeah, Sam, it is about disappearing into Infinity.
I'm taking the medicine that stops that.
I don't remember, but this senseof floating in inner
intergalactic space, I'm literally in the real world.
(34:24):
I'm sitting in a chair writing or thinking or in front of
somebody, but in the moment, in my head, I'm in.
I gave it a name, the Nothingness Place.
I'm just sitting in Infinity, and it's probably, you know, a
nanosecond, a second, a minute. I don't know.
People don't even notice it. Now that pill has gotten rid of
the phenomena. Not it doesn't have to.
(34:45):
Oh, so now you remember everything?
No, I just don't go there. And it scared me and it
frightened me. I and the story put, you know, I
was getting diagnosed and I wentfor a second opinion and I went
to there's a Georgetown hospitalhere.
It's a very well known memory clinic.
They were, they were my second opinion.
(35:06):
The honcho guy, head of the clinic memory clinic's got his
enter in there. The, you know, a doctor is going
to getting certified as a neurologist.
She looks at me and after I tellthis story, she says well was
that was that real? Was that a real nothing this
place or I called it a wall, a wall.
Was that a real wall or was it ahallucination?
(35:27):
And my instant reaction was it was real.
And then I go, of course it wasn't a real wall there.
I said no, I guess it was a hallucination, but that, you
know, we should have started with that.
Sorry. That was the biggest symptom
that sent me for the the diagnosis and then treatment and
medicine is taking that that particular thing away, hadn't
(35:50):
added the memory. I still can't remember these
things when I'm looking for it, but I don't end up floating in
an outer space and not knowing where I am for whatever short
moment that maybe we should go back and start this thing over.
No, this has been awesome. I mean, just it's so informative
for me because, you know, we, wecan talk and you know, we've had
(36:12):
people on the podcast that are, you know, medical doctors,
experts in the area of cognitivedegenerative disease and getting
better. And you know, we can get it from
that perspective. But you're the first person I've
had on here that can really educate our listeners and our
(36:33):
viewers on the perspective of this is what it's like going
through this particular condition.
And so I really appreciate, I don't care how many different
stories or divergent paths you go on today.
I'm absorbing this and I'm loving it and well.
And so we were back to audience.So hearing that from audiences
that that's so when I had that in the show, people say no, I
(36:55):
think I understood maybe what was going on in the mind of my
loved one door or something likethat.
So that's one of the reactions they they pick up that it's a
love story. It gives people, I hear hear
them say that gives them energy to keep on the thing.
I do want to say that the care care partner, the cognitive
(37:16):
navigator, again, the privilege,I wasn't for my wife.
It was not easy, but Susan was always Susan.
You know, I would. She wouldn't allow anybody to be
sad in front of her. I mean, she pushed us out of the
room. My daughter would say I had to
go into my car to cry. I had to go on her front porch
to cry and I needed to cry. We couldn't do it in front of
(37:37):
her. But she was tough and determined
and she was, you know, her courage and her determination
helped us. But the journey for those the
care partners in in the love partner in neurocognitive
diseases and cognitive decline, dementia is magnitude of orders
more challenging. I've seen it, I can hear it.
(37:59):
And so I'm I honor my wife for doing it.
I've seen that because I, you know, blind the play.
I wonder what the say, you know,I may disappear the line, the
opening line, the play is so this is how it ends.
So I'm not going to die. I'm just going to go away,
transform, become someone and Susan's going to stay with that
(38:20):
someone else. And I know that, you know, later
on I say, I wonder what the Sam of me then will know about the
Sam of me. Now, this is not hypothetical,
my friends. There is a ton of stuff.
I there was an article in the New York Times about two sons.
They were doctors of their theirdad who had been a Doctor Who
said I don't want to if I ever get Alzheimer's, don't treat me
(38:41):
because I don't become like them.
Well, doctor, son gets Alzheimer's, get sick and now
the sons have to say, should we treat him?
He has pneumonia. Their dilemma.
He was in the senior loving center, had a new girlfriend and
he was loving the good life withthe disease.
But we can't imagine that. We don't know that.
So thereby, and people can be agitated, people can with the
(39:06):
disease, you know, and it can get very hard there.
I'm thinking about it, so I'll mention it.
So what do you do if the challenge gets too hard?
I think that right now is one ofthe biggest, biggest dilemmas in
this disease because our countrydoes not provide strong support
for families in this circumstances.
You know, if you want to go intoa memory center, memory clinic
(39:29):
and a senior living facility, you probably know this.
There's a brand new one in our neighborhood.
You have to put down between 600,000 to 4.5 million because
we've went and visited to see ifit was something we were
interested and there are 11 to 12,000 a month.
You know, I, there was a obituary of someone I knew from
way back in the, you know, in the 90s, he'd been a well known
(39:51):
political consultant and moved out to Santa Fe.
His obituary, he'd gone to Switzerland and he said he did
not. And he, he went to Switzerland
to kill himself. He said, I, I'm getting to that
phase. I don't want to be a burden, an
overwhelming burden to my familythat shouldn't, we shouldn't
have to kill ourselves because we can't afford to be sick.
(40:12):
And I, I don't have a good answer to those families and
those dilemmas. I don't, I don't know what to do
luckily. We're not facing that though we
are having to decide should we find someplace should I go into
a memory center or should we move into a senior living with a
memory center? If you wait too long as we have
and already have a diagnosis, you can't get into their best
(40:36):
financial plan or not financial.Yeah, got lifelong life
something program where they'll give you a price when you come
in and that you're guaranteed tokeep it until you even if you
get. We're finding it out.
Turns out there's a new Sunrise living center walking distance
from our home, the memory Center.
Maybe maybe if I if I have to gosomeplace, I go to the memory
(40:59):
center and Susan could walk and see me.
Or, you know, there are adult day care facilities.
I did myself for the National conference of the Association of
Adult Day Care Providers. They're going to grow and bend.
So it's a show I get. I mean, I was surprised at how
(41:19):
well it's received, how people react to and how many people are
are facing this now are beginning to face it and there
are growing number of patient based organizations.
Dementia is a dementia friendly movement in the United States
(41:39):
that came from Europe. And my favorite place is called,
is called The Joy of Dementia and reimagining Dementia, taking
it to the streets. And it's in Brooklyn and she's a
good friend. And Mary Fridley, you know,
gives courses on this, how to live a meaningful and joyful
life and how to let people know we're around.
(42:01):
Hey, here I am. I'm real, right?
I love that. Taking it to the streets, that's
a new thing. There are others that are more
just, you know, having a lot of zooms with other Susan and I go
to Friday Zoom, you know, wantedto find the best Zoom, where's
the best zoom to have a support group for us here in McLean, VA.
Well, the one we found is in LasVegas, NV, a lot of the senior
(42:25):
living facilities have support groups because they want you to
go live there. They're marketing things more
than and that may be unfair, butthat that's how we've
experienced. It's why we like this particular
group and it's for people with the disease and their partners.
So there are some resources, butthen the audiences love it.
(42:45):
And I didn't understand it. I didn't know it.
I didn't, I had no idea. And so I love it.
I mean, I it's so meaningful to me to know that I have something
to offer is I go through somebody.
Once we were calling it late stages of life.
You know, mines this. There are all sorts of other
things. Maybe I'm maternity this year.
(43:09):
Maybe I'm going to be lucky enough.
I don't know if it's lucky or not.
I want to be 120. But you know something else
maybe, maybe it won't be this. I have a, a blog that I've
titled Carpe Memento and I just,it's a theme in life.
So just no matter what's going on, you gotta just live in a
moment and go from there. You know, you can't.
You, you can't. Yeah.
(43:30):
I mean, you have to make the best of of whatever comes your
way. So Susan and I on that point
work at that. So what do I mean New Year's
Eve, we actually talk about now.We're we're not going to go
there. We're not going to be Oh my God,
how bad are you going to get this year?
No, we're going to talk about how great this year's going to
be and what we can do. And we have to be intentional
(43:52):
about it. We have to I'm using my hand
wish off those those energy or down energy things that can pop
up there and no more. Why me?
That was a big thing in breast cancer.
Why me why you know, the answer is it is me.
I can't change this. And even if I knew who my by the
(44:12):
way, I have a genetic risk. My father's mother's side of the
family have the APOE 4 genetic risk.
I have one instance who knew I'mnot mad at them.
They didn't, you know, I mean, people can in me occasionally
run into that, but not much. And I want to be a voice for
live the day the best you can. That doesn't mean you don't make
(44:34):
plans. That doesn't mean to ignore the
obvious take risk. But I also under people say I
don't want to know. That's one of the things that's
the counter big thing in medicine, by the way, is that
there are new medicines. They can slow the progress, they
can't cure it. The earlier you're diagnosed the
better. The more you know your genetic
(44:56):
risk, the better. Again, if you want to be
current, I talked to somebody yesterday in this business with
the foundation around Alzheimer's and I don't know
anymore that who had parents andgrandparents with all timers.
And I ask her, well, have you been checked to see if you have
a genetic risk? So I don't want to know.
How can you not want to know what we see?
(45:18):
Well, I can't do anything about it.
Yes, you can. You can begin living that life.
You can begin changing lifestyles that help a little
bit. You're right, it's not curable.
And and this is my other advice to people on why they should
find out. There is a possibility that
there is something with me or with you that will help medicine
(45:39):
move the day of the cure for this disease.
Maybe just by a nanosecond, but I'll take whatever gift I had to
give. Maybe it's by a day, maybe it's
bigger. But if I can in that process,
maybe they find something that will help me.
But in that process, by being involved, that's why I was in a
drug test. And I, I sign up my as my wife
(46:03):
crazy. I sign up for every study of the
brain, you know, they come and ask you to do.
There's some place they just want to trace my handwriting and
my eye movement. I don't know.
OK, I'll do it for you if I can be of help in that.
What bigger gifts can we have tothe world, us, little me?
Maybe have something that can save millions of lives
eventually, just by a little, just by a day, just by a day.
(46:27):
Imagine that you can add a day on to 1,000,000 people's lives.
A good day. I don't know, sorry, that's an
exaggeration, but. No, I don't think it's an
exaggeration at all. I I wholeheartedly agree with
you that you know, if you can add a day to your life, how much
more impact can you have that you might not even be aware of?
Right and to other people's lives or by being part of the
(46:48):
and I don't know whether you know, I talked about that woman
whose book where they went to May.
I said that about maybe his namewas Brian by the way, at this
was maybe Brian had something unique about him that would let
it help science or find that care for me.
But we'll never know. And of course the odds are maybe
not I don't. I will tell you one other story.
(47:09):
I don't know how much time you have left, but when I was
letting people know I was on a phone call with some guys.
There was a phone call and we have a group of guys who have a
call every and I let him know I had Alzheimer's.
He said, you know one thing I said I have an aunt who has
Alzheimer's in the memory. I visitor once a month.
I talked for 1/2 an hour and I leave I've been doing it for
(47:29):
three years. The last Wednesday I went it's
been 3 years. I started to leave.
She turned to me thank me by name for coming to visit her
that I was stunned because everyother meeting she just sat there
and stare. We don't know what goes on
behind that blank face. Now maybe science has some
thoughts and can tell you what goes.
(47:49):
I still don't think we know I mean, And so living in a
meaningful life with the disease, taking what happens to
you, particularly if it's inevitable.
And then I always like to give ashout out to my once former, I'm
gonna say this with a :) girlfriend.
I was married, but her name was Lynn Fielder.
(48:11):
Lynn was on the board of directors with me at the World
Institute on Disability. And somehow we developed, you
know, friendship. And the first time I met her,
she insisted taking me to lunch and she said, you know, I'm not
poor Lynn with all Parkinson's. I'm not, you know, poor Lynn.
You've got that ugly disease called Parkinson's.
She died at 62 with the disease.But she always said, no, I am
(48:32):
Lynn with Parkinson's and I'm going to be the best Lynn with
Parkinson's world has ever seen.So her gift to me was I'm Sam
with Alzheimer's and that will be the best Sam with the
Alzheimer's the world has ever seen.
I'm not poor Sam. Why did I have to get it?
And it's hard, it's not. But I'm so lucky to met Lynn.
(48:54):
I just like to always give her ashout out.
And but it is this idea. How do you live a meaningful
life with what you're given, whether you want it or not?
But you can, you can do it. It's not always easy.
And the biggest unresolved problem for me in this journey
and for people is the unaffordability that becomes of
it and how it can ruin. I mean, we haven't talked about
(49:16):
it. It can ruin a family if they
don't have enough resources. And you know, people, you know,
I don't have a good answer when somebody else say I have two
kids or three kids and we have alittle money to help them get
along and we want to leave them something, but it'll all be
gone. And if they have to take care of
us and they bankrupt them too, and I don't want to do that and
I don't have, I'm not so full ofmyself to say I have a good
(49:39):
wish. I don't want them to have to
kill themselves. I don't think they should.
Anybody should ever have to be in that position.
I think our our society, AKA thegovernment needs to be in a
position to make sure that neverhappens.
So do you have any ideas in yourfrom your decades of advocacy
what needs to change and how we approach?
(49:59):
I'm going to just say the disease instead of saying
Alzheimer's or dementia and any of these, you know, more
neurocognitive disorders at A, at a more policy level.
Well, I, I, I think, look, Medicare pays for breast
navigator. Nobody pays for a cognitive
navigator. You have to hire somebody.
(50:20):
That's one of those costs that could help a lot right now.
They just get it covered. So the I knows with Alzheimer's
you need outside help them. However he defined it that I'd
sign help get paid to Medicare. It's typically them or or
whatever the government program,you know, it's society taking
care of the least of us. Every religion has that, every
(50:41):
ethical system has that. So that is a good start, whether
it's Medicare, Medicaid, or something unique for this
disease. And the financial burden isn't
so heavy. And then putting more into
research. And I love the idea of dropping
the word dementia. So it helps build words and
language of dignity and the ideathat we're, you know, you know,
(51:01):
respect for elders and those in our community.
I mean, that's to me my most immediate.
And that's not necessary a policy thing.
That's what something that each of us individually can advocate
for and just change our own personal behavior toward older
individuals. I think we, we have really
failed the aging population in this country in so many
different ways. And then, you know, one that we
(51:23):
just don't respect aging in thiscountry.
We think aging is just, well, it's expected you're going to
have cognitive and physical decline.
So there's nothing we can do about it.
Would just throw some pills at it.
And we spend billions of dollarson research that's ineffective
in terms of treating these. I know I had Charles Pillar on
recently who did an expose on the research that, you know,
(51:46):
basically is falsified research in Alzheimer's where they've
spent so much money chasing down, you know, just falsifying
data to support the amyloid hypothesis and not really
looking at what what can we be doing not only to treat the
disease, to prevent the disease,but more importantly, how do we
(52:07):
deal with it once it happens And, and we spend so much money
on the treatment side of things.It's.
About really dealing with how how we manage the conditions.
And we, we need to keep investing as a society in in
research and in studies. And I think that's one of them
(52:28):
and being willing to do that and, you know, respecting, you
know, dignity, you know, and butthat's policy too.
It's not just government policy,it's also social policy.
And, and, and we have a narrative going on into the in
(52:48):
our society that works at Gintelright now.
And you know, everybody has a role in trying to help this
change. Kind of last thing, where can
our listeners learn more about you and find where you're
performing? Do you have a website?
Yeah, Dementia man.com would be is a place and it has all sorts
(53:13):
of things. We even have merchandise now we
have a you know, puzzles are great.
You can so I'm and it has a calendar and that's a good, you
know, calendar. Is there the everything you need
to know about Dementia Man? I do a week, I do a weekly
podcast and it's on YouTube and on the last page, if people want
(53:34):
to sign up to get, you know, an e-mail, let the blogs up, they
can do it on the, the contact mepage is a place to sign up.
We'll provide links to all of that.
And yeah, I'm going to have to get you back on here.
Let's kind of get some regular updates in terms of, you know,
what's happening. Are you going to change your
name when we get, you know, we ban the word dementia?
(53:56):
You're going to have to be you. Know you're not the first person
to notice. In fact, early on somebody once
said, if you hate that word so much, how come you call your
play dementia man? And well, the answer is that's
the word that's out there for now.
And I'd love to be able to call it the cognitive decline man or
(54:19):
the CN, not CNN. Well, we'll come up with the
word, the cognitive, the cognitively impaired man, the
memory trip, the memory journey.I don't know.
We'll work. On that by the next time we have
you on here. We'll have a contest and the
people have to the window will get a title on the play.
(54:40):
How's that? Sounds great, but this again has
been awesome. I'm looking forward to actually
sharing this episode with my students and helping them to
better understand the D word a little bit better.
And, you know, just keep doing what you're doing.
You know, normally, and it sounds kind of odd to say keep
aging well. But, you know, despite the fact
(55:02):
that you are battling this degenerative disease, I'd have
to say you're aging well. But you know something, Jeff, I
love the title because it is thegoal.
No matter by definition, we're going to age.
Age means we get older and they may and we all end have the same
end. We can do every part of that
(55:23):
well, if we work at it, if we have a models available, if we
talk about it. And that's what you offer.
And you too. Yeah, just keep it up.
All right. Well, you have a great rest of
your day. Really appreciate the
conversation. You've warmed me today.
Thank you. Thank you for listening.
(55:44):
Hope you benefited from today's podcast.
And until next time, keep aging well.
You see that? Yeah.
It is something that was gifted to me by someone who saw my
show. It was after.
It's a woman's husband's self-image of memory loss.
But it was a week after he passed away and had seen my show
and she wanted me to have it. And I just love to tell that
story. Our guest, Samuel Simon, is a
(00:28):
man who has spent his life fighting for social change, from
his early days as a founding member of Nader's Raiders to his
decades of work shaping Internetand telecommunications policy.
But in what he calls the 4th actof his life, Sam is tackling
perhaps the greatest challenge yet living with early stage
Alzheimer's disease. Diagnosed in 2021, Sam refuses
to let cognitive decline define him.
(00:49):
He's an award-winning playwrightand actor, using theater as a
powerful tool to shift the narrative around dementia, a
term he passed fortunately rejects.
His autobiographical show, Dementia Man and Existential
Journey, offers an unfiltered look into the patient
experience, the challenges of our medical system, and the
urgent need for reform in neurocognitive care.
(01:11):
Sam is a storyteller and advocate, and as he proudly
calls himself, a troublemaker. Today we will talk about his
journey, his mission to redefinelife with cognitive disorders,
and what we can all learn from his unwavering commitment to
living fully and aging well. Let's begin by having you tell
us a little bit about yourself and your path to becoming
(01:32):
Dementia Man. Well, thank you, Jeff for having
me. And you know, I'm it's a weird
story in some ways. I was born and raised in El
Paso, TX, of all places, and very middle class, lower middle
class. My dad was a traveling salesman.
(01:53):
And then the play, I say I wrotea play about this.
I think Willie Loman, I don't know if you remember the depth
of a salesman, but he would yeah, he my dad would get in a
car and we would drive even all the way out to the West Coast in
an UN air conditioned Chevy. They take the back seat out.
(02:14):
He puts all the people forget their this was he did in the mid
40s to the late 50s, early 60s. They air traffic wasn't that big
there wasn't the Internet. So salesman went to big regional
conferences or in my case my dadwould go to small towns, take
out his bags of children's and infants Ware and I grew up
(02:38):
there. Not sure what I want to do with
my life. Ended up getting very very
young. We were Susan was 20 I was 21
and went to law school and endedup unlikely.
I my parents wanted me to stay in the Army and I actually have
a brother-in-law. My oldest sister married a West
(02:59):
Point guy who retired as a MajorGeneral and they said you know,
work for the stay in the Army and work for the governments.
It's safe because they've grown up in the Depression.
Anyway, I'm telling you too muchanyway and go to law school and
but and as a kid, it's in this Isort of became a troublemaker
(03:19):
even as a kid, good trouble. And since I I got mad at the
City Council of El Paso and I would 14 went down and told them
they were the curfews were unconstitutional and they
shouldn't have a 11:00 PM curfewfor kids something and under
anyway and and I'm going to law school and I did I it feels like
(03:40):
it's almost a gene of when when something seems unjust, the
temperature rises in me. I you know, I it seems almost
something I can't control. But in an unlikely event, one of
our classmates was a, you know, Ralph Nader people.
It's been a while. He's still alive.
He still does a weekly podcast. Ralph Nader was just getting
(04:02):
started. He wrote the book Unsafe at Any
Speed. And because of him, you know,
have airbags and seatbelts and all that stuff.
But he was just starting out. A Austin law firm, somebody had
worked in, in the summer, a Nader's Raider, what they called
him and came back to our class and said Ralph is hiring for
some full time lawyers. I did have a military
(04:23):
obligation, but he had come up anyway.
And I spent my first year working for Ralph Nader, as in
Nader's Raider kind of public interest lawyer, one of the
first Public Interest Lawyers. And I sort of had a career doing
that. So I'd like to call myself a bit
of a troublemaker, but I'm, I ended up doing a public affairs
company in Washington, DC. You know, I even have a son now
(04:47):
who's in this going to be 55 andhe's a member of the Virginia
Legislature. We're we're troublemakers.
So I, you know, I, I wasn't an actor.
I wasn't a performer. We didn't, you know, they
didn't, I didn't see any dementia in my family.
We had some folks. I have an aunt, by the way, I'd
(05:09):
love to brag about her, who did go into nursing home later in
life in 1920. She was the 16th woman ever to
be a lawyer in Florida. We just knew it knew family.
We're troublemakers. All this and two things begin to
happen. I, so I, I had a career.
(05:30):
So I started with Prof in 1970. Now we're talking about about
2006. I had built a public affairs
firm. I sold it.
I was able to, I was actually became a senior fellow for a non
profit in New York. I actually commuted every other
week. But I started doing some theater
improv. I love improv.
(05:52):
It taught me, I encourage anybody who is interested in
even even the old people like me.
I would be 80 this year. The most important thing I think
I've learned in my life was improvisational theater and in
aging. And in the certainly dementia
world, there is teepa snow. I don't know if you know the
name. She's a woman who specializes on
(06:16):
how to work with people with dementia in nursing homes, and
she uses improv strategies. A Yes.
And if somebody has serious dementia and they say we're not
home, even though they are, you can't tell them they are.
You say, yes, of course you're home of course you're not home.
(06:37):
Let's go hang in the car, drive around the block and go back.
We're home now you can't anyway.And so I used I fell into a
theater because my wife and talked about aging these
happens. My wife in around 2000 was
diagnosed with advanced breast cancer and the doctors pulled me
over and said get ready. She's not going to make it.
(06:57):
No, she did unlikely a survivor.And we went through that process
of getting ready for somebody, you know, the one you love most
in the world. And she survived.
And it took me almost nine yearsto realize that I hadn't dealt
with that issue. And I ended up was doing some of
my improv work and I discovered that I had a story to tell.
And I there was my first play and I because I happened to be
(07:19):
going back and forth New York, I, I wrote a play called the
actual dance loves ultimate journey from the care partner
caregiver. He talked about the aging
journey. A whole lot of us are either get
sick and we have somebody care for us or we have our partners
or family members and they beginto get ill and we care for them.
It is almost inevitable roles for many, many people and I was
(07:45):
a care but I call love partner. That was my name for it.
I came to understand that there are two parts of that.
There's a care partner where I actually had to give her care.
I had sometimes I'd give her shots on her stomach and learn
how to do that. My heart was breaking.
So we're a love partner. So we have those two parts of
that role. She gets well, I keep work doing
(08:06):
things in New York and back and I was I wrote my play about that
journey I was doing performing my play and all of a sudden I
start driving on the wrong side of the road every now and then
and all of a sudden I can't remember things.
I start by getting lost. I can't remember things.
My internist when I complained and it was a couple of years.
(08:29):
I was complaining. He said, Sam, you're just an
over educated man overreacting to normal age.
And so we kept doing that. Then I had anyway why I'm
getting into the subject of the play.
But anyway, I, I discovered thatit was early stage Alzheimer's.
(08:50):
We can go in a little bit more detail.
And that's where we are now writing a play and performing a
play with Alzheimer's disease. You get a diagnosis of a
terminal disease. And you know, the first question
is what what do I do? What It's so tempting to curl up
and go into your room and don't come out.
Actually, my friend, I'm not oneof my first performances.
(09:11):
Somebody in the audience, we do discussion afterwards.
Somebody, one of the first people who spoke, I can still
see the woman stand up and say my husband was diagnosed and he
came home and he went in his room and he didn't come out.
It's her words and that was figurative.
But and so that's my story. I'm sticking to him.
We can talk some more about the play, but if in so many ways I'm
(09:33):
an unlikely, I was as Ralph Nader, advocate public affairs
guy in Washington. And did you know, I got a little
publicity, You know, when I was doing that back in the late 90s
and early late 90s, I was on Face the Nation, Good Morning
America Today show. He was even on the Oprah Winfrey
Show once. And my son called me a minor
(09:57):
celebrity back then. You know, I just, yeah, I could
never imagine being here doing this.
I don't know how you know stories of growing up and
becoming something you never imagined.
So it seems like when you got your diagnosis you did the
opposite of going into your roomand not coming out, but is that
(10:17):
the case? Just the opposite.
Well, I, you know, I, I'm talking to play and I talked
about my life. I started troublemaker.
I'm I had a background. I worked, you know, very
visible, very visible. I even as I'm what are you doing
the Ralph Nader work in public? You know, I had taught a couple
of things. It's still probably nice day.
(10:40):
If you're in a starting in a newfield and you're trying to be an
advocate, raise your hand, be noticed, talk.
And you know, like I said, at 14, I'm down to the City Council
meeting telling them that their curfew was unconstitutional.
And I always had that personnel.I've been loud a bit.
(11:01):
You know, I've been, I've done that a couple of times.
I don't know if I need to go in a couple of times in my life
where I'm all of a sudden the loudest guy in the room.
And often that way they handle it is all right.
You be president of the board oryou take on that test.
So, and I was doing when I was diagnosed with ultimate, I had
been doing the play about Susan,about being the care partner.
(11:24):
And so I had developed a theatrical cohort.
I call him a, you know, there's this big conference every
January, New York. They usually don't have people
like, you know, again, I went toit every year for about 5 years.
I had other actors who knew my work, knew I play.
I started telling people that myfirst diagnosis was mild
(11:45):
cognitive impairment known as MCI.
And that was in 2018. But until 2022 that I got the
Alzheimer's, why I was mildly cognitive impaired because I had
early stage Alzheimer's and theywere telling me since write
about it, take it, put it on thepage and on the stage.
That's what actors do or particularly solo actors.
(12:06):
It didn't register at 1st and mild cognitive impairment wasn't
all that bad. It was explained a few things of
what was going on. The Alzheimer's was a little bit
harder. We it took a minute, it took a
minute and we had, we have two adult children.
Of course, I'd love to say 1's alawyer and a legislator.
No, but one's a lawyer. The other one therefore has to
(12:27):
be a, of course, she's a pediatric dentist, a doctor.
And we talked to our children and, you know, I guess I didn't
know what else to do. In some ways I didn't want, and
I had the experience of writing about an existential matter.
You know, I mentioned I was working with the, I worked part
(12:48):
time in New York every other week.
It was with the social justice ministry, a nice Jewish boy.
I went and worked with the social justice ministry, the
Collegiate Church of New York, the oldest church in America.
And the friend had taken it overand they were, we were using
theater and art and music aroundsocial change.
(13:09):
And I had experienced and saw, and I still believe now, and now
I believe people's people can bepersuaded by emotion more than
theory. You know, you can write this
policy paper and send it to somebody and they'll read it.
But if you can give them an opera or a show or something
(13:30):
that hits them in their heart, they'll think differently or
they'll maybe reconsider. And so I hadn't seen that and
done that. I had this encouragement and I
had people I'd worked with aboutthe other play and it wasn't, it
wasn't again obvious to me. I'm learning now.
(13:50):
I, I'm, I've entered this whole the whole universe of people
with cognitive decline cognitive, you know, the baby
boomer generation and their children.
It's huge that are being confronting cognitive or just
late in life diseases and we're living with the Alzheim Dr.
(14:15):
Alzheimer's narratives and people don't know what that is.
You know, it's almost a Frankenstein idea of what
somebody would, you know, reminded when we growing up,
cancer wasn't mentioned as a word.
It was the C word. Now we have the cerebral word
dementia, but, and it is based on the idea that there's sort of
(14:36):
this, this late stage version ofthe disease of the person
sitting in a nursing home without kind of lurk on their
face. And that is late stage.
My neurologist when I got diagnosed with Alzheimer's said
it could be 5 to 10, maybe even 15 years before I got a lot
worse. I'm seven years into it and I'm,
(14:57):
you know, beginning to feel it more.
I know my I know a clock is ticking, but there are so many
of us in these earlier, earlier stages.
And if I have anything wonder it's possible live a meaningful,
purposeful life with this disease.
And then you may know there's a counter narrative and I feel
like I'm just talking, talking about.
(15:19):
That's what you're here for. But one of my motives actually
was I was exercising one day listening to a podcast.
No, maybe like a good podcast, but the guest was a person who'd
written a book. I'm not going to give them
credit. I don't always talk thing to be.
But the book was about how this woman's husband was diagnosed
with early stage Alzheimer's, mydiagnosis.
(15:41):
And she quotes him as saying, I don't want to die, but I don't
want to continue to become a lesser and lesser person.
And the rest of the book, it washow hard it was to get for them
to get to sorts of them so he could kill himself with poison.
And there is a narrative in support of that choice.
And I want to be the opposite boys, that life with this
disease is worth living and we can still continue to be leading
(16:06):
a meaningful, useful life and dothings.
And there is a there's a whole new movement.
I've just learned this and I'm making connections with them in
senior living homes and in senior living around the
Montessori method. It's like, oh, I thought that
was for grade school kids in my the rich side of how in
(16:27):
Montessori, which I did not understand, is about working
with people in this instant in grade schools and schools.
It's see a child's natural inclinations and work with that
lead with, you know, if they're a good typist or if they're a
good actor or if they athletic teach them through that and let
(16:47):
them develop their own strength.They're beginning to apply that
idea to people with dementia, with cognitive decline.
I was talking to somebody on thepodcast, just my own podcast
with somebody and they were joking in because they were they
were doing it, they were familiar with this.
(17:07):
He said, well, if you came to our place, we would put you in
that in charge of the drama club, in the memory unit.
They would have a drama club even for those.
And So what I hope I can be partof is helping people reimagine
this journey, even with cognitive issues.
And you know, so that's sort of my story at the moment, what I'm
(17:30):
trying to do. You're on the West Coast or but
your podcast is everywhere, right?
Yes, yeah, we're, I don't think on almost every continent one or
two people, but yeah. You know, are you familiar with,
there's a big conference coming up in April in Florida called On
Aging. No, I'm not familiar.
(17:50):
Yeah, I'm going to be there, that's all Mates, Maybe people
here, they could have. I had never heard of it.
It's called On Aging and I'm going to I have a room April
20th at 5:00. If you if you, if anybody
listens, is going to be at the on aging come conference, come
say hello. But this, you know, that's more
(18:13):
this is what's happening to America and to and so, you know,
it's a huge cohort of and I I want to be part of this movement
that you can live even in impaired ways, even as your own
health changes. I don't like the word
(18:33):
deteriorates changes. And you can find joy, you can
find meaning, you can find purpose, you can help each
other. You can be in a drama club and
have maybe even mid stage Alzheimer's.
But anyway, so that's, that's myenergy and that's my story.
I'm sticking to it. Yeah, we don't ever hear of
(18:55):
people talking about middle stage Alzheimer's.
I just realized that, you know, it's like either early stage or
late stage. There's never talk about the
middle stage and. And it is a process and it is a,
it is a, you know, it can changequickly on the sometimes and
sometimes it's slow. There's a consensus right now
(19:17):
with my wife and my neurologist that my doing this work is
slowing down the progress that my energy and working at this,
by the way, I was looking to seeif I had it.
I don't have it with me. I carry the script in my hand,
but I can't memorize. I, I memorized the first play, I
would boom, boom, boom, an hour play memorized.
(19:39):
There was no problem. And in fact, one of the the
symptoms and during the pandemic, I was still doing the
other play, the actual dance, but I was doing it from home.
Now I was had my phone and I wasable to perform over Zoom for a
lot of the the breast cancer clubs around the country,
(20:01):
Gilda's clubs. And it was actually fortunate
why Susan, my wife, would sit onthe side.
She would have the script, but usually that wasn't an issue.
I started missing my lines, forgetting lines so she could
cue me up from the side. Now, even though I carried the
script on stage. So I refer to it.
I refer to it more than I think when I see videos of me on stage
(20:22):
when it's done. So I'm looking down too much.
But anyway, so now Susan carriesthe script and sits in the first
row. I call it my cognitive
navigator. And you know, there's an there's
a big advocacy piece of my work,by the way, and I can transition
to that because I want to get rid of the word Alzheimer's.
And there is a movement there isa delete the D word or get rid
(20:46):
of the D word there. I did not know this.
You know, federal government cannot use a word retarded in
federal documents that other Congress passed a law that says
you can't do that. There's a group of people headed
by this gentleman out of Iowa. We're bringing together a
lobbying effort says, and you can't use the dementia word You
need to use the medical world has even changed in it.
(21:09):
And then it's called the DSM 5, which is the neurology book on
out of classified diseases called neurocognitive disorder
major minor 2013. They changed it.
So I I'm with them. I want to get rid of the word.
I used to be active in the disability movement.
I was on the board of directors of the World Institute on
(21:31):
Disability for 15 years. I was even vice chair of the
board months and that. And you know, America, right?
You have curbs, curb cuts for people with wheelchairs,
millions of them. You have ramps into every public
building. You have Braille on the elevator
(21:54):
doors. What do you have for me right
now? Not anything.
And the ADA, the Americans with Disability Act was amended in
2018, No 2008 to include cognitive disorder
accommodation. So I, I want businesses
particularly into interfacing with the public to have a, a
(22:19):
cognitive disorder desk or a, you know, I'm going to get
something here real quick and I'm back.
I don't know if you've seen thisbefore.
You can get it in an airport if you have a cognitive store that
has hidden disability. And in Europe at airports and
train stations, they have a deskwith big yellow flowers.
So if you have a disease and you're there, you have a
(22:40):
cognitive disease, you can go upand get help.
Increasingly at airports now youcan get these and we have we had
an experience where I was traveling to Iowa for a
performance. We were coming back.
I was wearing this as we were inthe airport.
Susan and I put my bag in. I move forward.
Susan's my wife's behind me. The TSA agent sees me, looks at
(23:04):
her say are you with him? She says he says yes, yes, I'll
take care of your bags. You go stay with him.
So they know and but what about when I go?
I can still go to the grocery store, but it's going to take a
little longer. I won't remember where anything
is anymore. I'm going to need a bit of help.
So again, in this Iowa community, they were working
(23:27):
with grocery stores to have carts with a yellow sign with
flowers on front of it. And the checkout line that, you
know, right now there are there are still a few checkout lines
left. And you know, one who could have
the sign so that you don't slow up everybody else and they could
take time, but they know that you they don't get there.
You know, the person helping doesn't get frustrated.
(23:48):
But you could do that almost anywhere in any environment
because just as we forget that there is mid stage, I can stay
more engaged in the community for much longer if there was
just a little help. And so that that's part of my
advocacy. I want cognitive navigators as
available as curb cut. I want to get rid of that the D
(24:12):
word and I'm the strong voice against the company suicide.
I'm going to talk a little bit more about that as we go.
But I teach a course in exercise.
It's pathophysiology and exercise.
And so you have just informed meI need to stop using the the D
word. And for some of our listeners
(24:33):
that are listening to this as opposed to watching it, they
didn't see your air quotes. I use air quotes a lot too.
So I always have to express thatI'm using air quotes around
dementia. And I like the the neuro
cognitive companion or assistant.
What was the term you used there?
Navigator. Neural Navigator.
I get starting adopting that a little bit more too and really
(24:54):
expressing to my students how important it is because I have a
lot of students that can go on into physical therapy, physician
assistant programs, occupationaltherapy, They they and I.
And that's why I love teaching exercise science and having
people going into professions like that because they have a
little bit greater training in regards to kind of the social
(25:14):
interactions. I teach my students that, you
know, all conditions that we're dealing with are biomechanical
psychosocial. And if we don't address that
psychosocial piece or understandthat there's more going on in
the persons life than just this condition or their need for this
particular exercise or whatever it might be, we're going to miss
them dramatically. And I, I love these terms.
(25:35):
I'm learning a lot to. Cognitive navigator.
It's cognitive shorthand. CN my CN my cognitive navigator.
Sorry, I misstated. It Oh, that's OK.
You're allowed to misstate stuff.
I misstate stuff all the time. So.
So what were some of the biggestchanges you had to make in your
(25:55):
daily life after your diagnosis?Well, you know, a couple of
things are going on. One of the biggest issues was
driving. Now I still drive, but barely
alone. The risk of getting lost is is
moderate, but increasingly and Iworry about it.
And so I actually pushed my neurologist to give me a
(26:20):
prescription to be tested by a vocational training organization
and they do that. I was should have done it
earlier. But they have a system in
Virginia and I suspect every other state that I'm going to
put office on movement one second.
OK, sorry about you. Maybe one of my accommodation.
(26:41):
Alexa, just remind. Well, I'll let you listen to it.
Sam, here is your reminder. Take my pills.
So I have Alexa remind me every morning to make sure I've taken
my morning medication to be current.
I need to add the evening because I forgot to take my
pills last night. I hated it.
This is pisses me off because not until this morning I went to
(27:04):
take my morning medicine and there's some pills from last
night. I didn't do it again.
You want to know one of the things that that's real time, my
friend, real time. But you know, so driving, I took
the test. I had to take it twice.
I surprised myself. They said you can continue
driving, but on distances, make sure there's somebody in your,
(27:27):
your car finding directions. You know, I, I don't say first
remembering where I left things,put my keys because you know,
the, you say that and the first thing is, oh, I've done that
too. We've learned there is a
difference. And somebody suggested to us off
being Susan to me. And the difference between me
and my wife is she can retrace her steps and find it.
(27:49):
I can't retrace my steps. I don't, I won't remember where
I put my keys or my wallet. I don't know where I won't know
where I had been. I so I can search everywhere,
which is what I end up doing, except we have set places.
We have, this is where it belongs.
And Susan works and I mean, and we change, we accompany even,
(28:09):
you know, again, because it's socurrent, because it's happened
today. Literally Susan realizes my wife
that she has to affirmatively remind me to take my evening
pill, that we can't just assume that it's happened, you know,
and I don't. And the frustration means I
don't understand how it happened.
They're sitting right where I brush my teeth right next to it.
(28:30):
And I did that. I went through everything.
I went to my but I didn't and I don't remember why I didn't.
I mean, it's why wouldn't I? They're there.
I do it every night or almost every.
And so again, the difference between the occasional I forget
this and me is it there's nothing there when it happens
and it and so these are some of the the symptoms and you know,
(28:56):
traveling. I used to, like I mentioned
earlier, I used to travel to NewYork every other week.
I'd go up on a Monday, come backon a Friday.
I'd stay at a hotel, I'd get on the train and go alone.
Travel now has built such anxiety in me that, I mean, it's
hard and we have to travel a dayearlier.
(29:17):
Like when I perform, I travel the next day earlier just to get
over the anxiety that builds andjust traveling.
And these are all new things. And I don't read nearly as much.
I used to read a book a week andagain, it's something you
notice. It's not like intention.
It's also I'm not doing it. You know, I love to read, I love
(29:38):
stories. I just don't know why it doesn't
happen. But I can't perform my play.
I love doing my play and again, it's not memorized it.
I have to be on book and the time like the clock is ticking.
We had to make an affirmative decision.
So I started in the July of 2023and through half of 23, all of
(30:02):
24, and we had to make a decision.
Should I keep even trying for 2025?
I like to book things and then all of a sudden I can't do it.
We feel I can get through that, but we have to be alert and
aware every, every time. And I look to others to notice.
By the way, I'm not the best judge of my own cognitive Helen.
(30:25):
And so that's why I'm very, I'm very lucky, Susan and I.
I'll tell you, I used to do a podcast from my granddaughter
because she complained that grandpa always went deep.
So Grandpa is about to go deep. You know, there's something very
fortunate about our journey. You know, I, I had to get ready
very actively to hold Susan. I thought she'd take her last
(30:47):
breath. And now we're, our roles are
switched and not imminent. But this is not curable.
And so I think we both would agree, we both thought we there
is a gift in being able to be ofcomfort and hold somebody you
love as they face the end of life.
And it is a gift to each other. It's not just one way.
(31:09):
Now, it is not easy. The cared partner journey, and
I'll talk about that in a secondis is difficult, but they're
underneath it. And then just talk to somebody
else. What bigger gift to be able to
let somebody know as they take their last breath that they're
loved, they're loved to their core.
What a bigger gift can you give to anybody and what gift can you
(31:31):
give to allow that person to feel that way?
It's a mutual gift. It's not easy to get there, but
I think we're lucky that we found that.
You might call what that Susan almost died from breast cancer
and I'm an incurable disease now.
Well, what's lucky is that we can live the life with it in
this way and that's if anything I want to be able to offer is
(31:55):
these ideas to others that is unhappy if we may be as shocking
as it is at the moment. If there is the possibility of
finding meaning and joy and loveparticularly and have to be a
spouse to be a parent, you know,a child to a parent, you know
what a gift to be able to do that to your mother or father.
(32:16):
Like, I know there are all sortsof other things out there and
other relations. But anyway, you got me and I
forgot where I was going. Going deep, like your
granddaughter said. Yeah, Grandpa goes deep.
So what kind of reactions have you gotten from your audiences,
both from those experiencing cognitive decline and from their
(32:36):
loved ones? Well, I've learned some.
This is sounds odd. I've learned I I discovered this
when I did my first place. I learned from first of all my
own performances. I understand my own story
differently and I learn from audiences.
And one of the first things I never anticipated and still is
one of the frequent first comments is thank you, Sam.
(32:59):
I've always wondered what my father, uncle, whoever, how
their mind might have been working.
Now I think maybe I understand it a little bit.
You know, I don't think we've talked about yet the biggest
cognitive experience or maybe I should stop and mention because
the thing that got everybody excited, or I'd say excited
(33:20):
concern, was when I began to develop a phenomena.
And it's sort of the theme of the play that the entire right
side of my brain when I started trying to remember things.
I'm going to have like 2 tiny eyes in the front of my forehead
inside but turn to the right. This sounds crazy.
I where am I going tomorrow? All right, where am I going
(33:42):
tomorrow? Eyes, right?
Look for the answer. And instead there's like outer
space. There's an infinite black place
that I literally fall into looking for that answer and then
I'm back. And so that Doctor Who said, oh,
you're just a over educated man overreacting to normal aging.
As soon as I told him about that, that's when he got me to a
(34:03):
neurologist. And so the play is about
disappearing into Infinity. I should have been.
Yeah, Sam, it is about disappearing into Infinity.
I'm taking the medicine that stops that.
I don't remember, but this senseof floating in inner
intergalactic space, I'm literally in the real world.
(34:24):
I'm sitting in a chair writing or thinking or in front of
somebody, but in the moment, in my head, I'm in.
I gave it a name, the Nothingness Place.
I'm just sitting in Infinity, and it's probably, you know, a
nanosecond, a second, a minute. I don't know.
People don't even notice it. Now that pill has gotten rid of
the phenomena. Not it doesn't have to.
(34:45):
Oh, so now you remember everything?
No, I just don't go there. And it scared me and it
frightened me. I and the story put, you know, I
was getting diagnosed and I wentfor a second opinion and I went
to there's a Georgetown hospitalhere.
It's a very well known memory clinic.
They were, they were my second opinion.
(35:06):
The honcho guy, head of the clinic memory clinic's got his
enter in there. The, you know, a doctor is going
to getting certified as a neurologist.
She looks at me and after I tellthis story, she says well was
that was that real? Was that a real nothing this
place or I called it a wall, a wall.
Was that a real wall or was it ahallucination?
(35:27):
And my instant reaction was it was real.
And then I go, of course it wasn't a real wall there.
I said no, I guess it was a hallucination, but that, you
know, we should have started with that.
Sorry. That was the biggest symptom
that sent me for the the diagnosis and then treatment and
medicine is taking that that particular thing away, hadn't
(35:50):
added the memory. I still can't remember these
things when I'm looking for it, but I don't end up floating in
an outer space and not knowing where I am for whatever short
moment that maybe we should go back and start this thing over.
No, this has been awesome. I mean, just it's so informative
for me because, you know, we, wecan talk and you know, we've had
(36:12):
people on the podcast that are, you know, medical doctors,
experts in the area of cognitivedegenerative disease and getting
better. And you know, we can get it from
that perspective. But you're the first person I've
had on here that can really educate our listeners and our
(36:33):
viewers on the perspective of this is what it's like going
through this particular condition.
And so I really appreciate, I don't care how many different
stories or divergent paths you go on today.
I'm absorbing this and I'm loving it and well.
And so we were back to audience.So hearing that from audiences
that that's so when I had that in the show, people say no, I
(36:55):
think I understood maybe what was going on in the mind of my
loved one door or something likethat.
So that's one of the reactions they they pick up that it's a
love story. It gives people, I hear hear
them say that gives them energy to keep on the thing.
I do want to say that the care care partner, the cognitive
(37:16):
navigator, again, the privilege,I wasn't for my wife.
It was not easy, but Susan was always Susan.
You know, I would. She wouldn't allow anybody to be
sad in front of her. I mean, she pushed us out of the
room. My daughter would say I had to
go into my car to cry. I had to go on her front porch
to cry and I needed to cry. We couldn't do it in front of
(37:37):
her. But she was tough and determined
and she was, you know, her courage and her determination
helped us. But the journey for those the
care partners in in the love partner in neurocognitive
diseases and cognitive decline, dementia is magnitude of orders
more challenging. I've seen it, I can hear it.
(37:59):
And so I'm I honor my wife for doing it.
I've seen that because I, you know, blind the play.
I wonder what the say, you know,I may disappear the line, the
opening line, the play is so this is how it ends.
So I'm not going to die. I'm just going to go away,
transform, become someone and Susan's going to stay with that
(38:20):
someone else. And I know that, you know, later
on I say, I wonder what the Sam of me then will know about the
Sam of me. Now, this is not hypothetical,
my friends. There is a ton of stuff.
I there was an article in the New York Times about two sons.
They were doctors of their theirdad who had been a Doctor Who
said I don't want to if I ever get Alzheimer's, don't treat me
(38:41):
because I don't become like them.
Well, doctor, son gets Alzheimer's, get sick and now
the sons have to say, should we treat him?
He has pneumonia. Their dilemma.
He was in the senior loving center, had a new girlfriend and
he was loving the good life withthe disease.
But we can't imagine that. We don't know that.
So thereby, and people can be agitated, people can with the
(39:06):
disease, you know, and it can get very hard there.
I'm thinking about it, so I'll mention it.
So what do you do if the challenge gets too hard?
I think that right now is one ofthe biggest, biggest dilemmas in
this disease because our countrydoes not provide strong support
for families in this circumstances.
You know, if you want to go intoa memory center, memory clinic
(39:29):
and a senior living facility, you probably know this.
There's a brand new one in our neighborhood.
You have to put down between 600,000 to 4.5 million because
we've went and visited to see ifit was something we were
interested and there are 11 to 12,000 a month.
You know, I, there was a obituary of someone I knew from
way back in the, you know, in the 90s, he'd been a well known
(39:51):
political consultant and moved out to Santa Fe.
His obituary, he'd gone to Switzerland and he said he did
not. And he, he went to Switzerland
to kill himself. He said, I, I'm getting to that
phase. I don't want to be a burden, an
overwhelming burden to my familythat shouldn't, we shouldn't
have to kill ourselves because we can't afford to be sick.
(40:12):
And I, I don't have a good answer to those families and
those dilemmas. I don't, I don't know what to do
luckily. We're not facing that though we
are having to decide should we find someplace should I go into
a memory center or should we move into a senior living with a
memory center? If you wait too long as we have
and already have a diagnosis, you can't get into their best
(40:36):
financial plan or not financial.Yeah, got lifelong life
something program where they'll give you a price when you come
in and that you're guaranteed tokeep it until you even if you
get. We're finding it out.
Turns out there's a new Sunrise living center walking distance
from our home, the memory Center.
Maybe maybe if I if I have to gosomeplace, I go to the memory
(40:59):
center and Susan could walk and see me.
Or, you know, there are adult day care facilities.
I did myself for the National conference of the Association of
Adult Day Care Providers. They're going to grow and bend.
So it's a show I get. I mean, I was surprised at how
(41:19):
well it's received, how people react to and how many people are
are facing this now are beginning to face it and there
are growing number of patient based organizations.
Dementia is a dementia friendly movement in the United States
(41:39):
that came from Europe. And my favorite place is called,
is called The Joy of Dementia and reimagining Dementia, taking
it to the streets. And it's in Brooklyn and she's a
good friend. And Mary Fridley, you know,
gives courses on this, how to live a meaningful and joyful
life and how to let people know we're around.
(42:01):
Hey, here I am. I'm real, right?
I love that. Taking it to the streets, that's
a new thing. There are others that are more
just, you know, having a lot of zooms with other Susan and I go
to Friday Zoom, you know, wantedto find the best Zoom, where's
the best zoom to have a support group for us here in McLean, VA.
Well, the one we found is in LasVegas, NV, a lot of the senior
(42:25):
living facilities have support groups because they want you to
go live there. They're marketing things more
than and that may be unfair, butthat that's how we've
experienced. It's why we like this particular
group and it's for people with the disease and their partners.
So there are some resources, butthen the audiences love it.
(42:45):
And I didn't understand it. I didn't know it.
I didn't, I had no idea. And so I love it.
I mean, I it's so meaningful to me to know that I have something
to offer is I go through somebody.
Once we were calling it late stages of life.
You know, mines this. There are all sorts of other
things. Maybe I'm maternity this year.
(43:09):
Maybe I'm going to be lucky enough.
I don't know if it's lucky or not.
I want to be 120. But you know something else
maybe, maybe it won't be this. I have a, a blog that I've
titled Carpe Memento and I just,it's a theme in life.
So just no matter what's going on, you gotta just live in a
moment and go from there. You know, you can't.
You, you can't. Yeah.
(43:30):
I mean, you have to make the best of of whatever comes your
way. So Susan and I on that point
work at that. So what do I mean New Year's
Eve, we actually talk about now.We're we're not going to go
there. We're not going to be Oh my God,
how bad are you going to get this year?
No, we're going to talk about how great this year's going to
be and what we can do. And we have to be intentional
(43:52):
about it. We have to I'm using my hand
wish off those those energy or down energy things that can pop
up there and no more. Why me?
That was a big thing in breast cancer.
Why me why you know, the answer is it is me.
I can't change this. And even if I knew who my by the
(44:12):
way, I have a genetic risk. My father's mother's side of the
family have the APOE 4 genetic risk.
I have one instance who knew I'mnot mad at them.
They didn't, you know, I mean, people can in me occasionally
run into that, but not much. And I want to be a voice for
live the day the best you can. That doesn't mean you don't make
(44:34):
plans. That doesn't mean to ignore the
obvious take risk. But I also under people say I
don't want to know. That's one of the things that's
the counter big thing in medicine, by the way, is that
there are new medicines. They can slow the progress, they
can't cure it. The earlier you're diagnosed the
better. The more you know your genetic
(44:56):
risk, the better. Again, if you want to be
current, I talked to somebody yesterday in this business with
the foundation around Alzheimer's and I don't know
anymore that who had parents andgrandparents with all timers.
And I ask her, well, have you been checked to see if you have
a genetic risk? So I don't want to know.
How can you not want to know what we see?
(45:18):
Well, I can't do anything about it.
Yes, you can. You can begin living that life.
You can begin changing lifestyles that help a little
bit. You're right, it's not curable.
And and this is my other advice to people on why they should
find out. There is a possibility that
there is something with me or with you that will help medicine
(45:39):
move the day of the cure for this disease.
Maybe just by a nanosecond, but I'll take whatever gift I had to
give. Maybe it's by a day, maybe it's
bigger. But if I can in that process,
maybe they find something that will help me.
But in that process, by being involved, that's why I was in a
drug test. And I, I sign up my as my wife
(46:03):
crazy. I sign up for every study of the
brain, you know, they come and ask you to do.
There's some place they just want to trace my handwriting and
my eye movement. I don't know.
OK, I'll do it for you if I can be of help in that.
What bigger gifts can we have tothe world, us, little me?
Maybe have something that can save millions of lives
eventually, just by a little, just by a day, just by a day.
(46:27):
Imagine that you can add a day on to 1,000,000 people's lives.
A good day. I don't know, sorry, that's an
exaggeration, but. No, I don't think it's an
exaggeration at all. I I wholeheartedly agree with
you that you know, if you can add a day to your life, how much
more impact can you have that you might not even be aware of?
Right and to other people's lives or by being part of the
(46:48):
and I don't know whether you know, I talked about that woman
whose book where they went to May.
I said that about maybe his namewas Brian by the way, at this
was maybe Brian had something unique about him that would let
it help science or find that care for me.
But we'll never know. And of course the odds are maybe
not I don't. I will tell you one other story.
(47:09):
I don't know how much time you have left, but when I was
letting people know I was on a phone call with some guys.
There was a phone call and we have a group of guys who have a
call every and I let him know I had Alzheimer's.
He said, you know one thing I said I have an aunt who has
Alzheimer's in the memory. I visitor once a month.
I talked for 1/2 an hour and I leave I've been doing it for
(47:29):
three years. The last Wednesday I went it's
been 3 years. I started to leave.
She turned to me thank me by name for coming to visit her
that I was stunned because everyother meeting she just sat there
and stare. We don't know what goes on
behind that blank face. Now maybe science has some
thoughts and can tell you what goes.
(47:49):
I still don't think we know I mean, And so living in a
meaningful life with the disease, taking what happens to
you, particularly if it's inevitable.
And then I always like to give ashout out to my once former, I'm
gonna say this with a :) girlfriend.
I was married, but her name was Lynn Fielder.
(48:11):
Lynn was on the board of directors with me at the World
Institute on Disability. And somehow we developed, you
know, friendship. And the first time I met her,
she insisted taking me to lunch and she said, you know, I'm not
poor Lynn with all Parkinson's. I'm not, you know, poor Lynn.
You've got that ugly disease called Parkinson's.
She died at 62 with the disease.But she always said, no, I am
(48:32):
Lynn with Parkinson's and I'm going to be the best Lynn with
Parkinson's world has ever seen.So her gift to me was I'm Sam
with Alzheimer's and that will be the best Sam with the
Alzheimer's the world has ever seen.
I'm not poor Sam. Why did I have to get it?
And it's hard, it's not. But I'm so lucky to met Lynn.
(48:54):
I just like to always give her ashout out.
And but it is this idea. How do you live a meaningful
life with what you're given, whether you want it or not?
But you can, you can do it. It's not always easy.
And the biggest unresolved problem for me in this journey
and for people is the unaffordability that becomes of
it and how it can ruin. I mean, we haven't talked about
(49:16):
it. It can ruin a family if they
don't have enough resources. And you know, people, you know,
I don't have a good answer when somebody else say I have two
kids or three kids and we have alittle money to help them get
along and we want to leave them something, but it'll all be
gone. And if they have to take care of
us and they bankrupt them too, and I don't want to do that and
I don't have, I'm not so full ofmyself to say I have a good
(49:39):
wish. I don't want them to have to
kill themselves. I don't think they should.
Anybody should ever have to be in that position.
I think our our society, AKA thegovernment needs to be in a
position to make sure that neverhappens.
So do you have any ideas in yourfrom your decades of advocacy
what needs to change and how we approach?
(49:59):
I'm going to just say the disease instead of saying
Alzheimer's or dementia and any of these, you know, more
neurocognitive disorders at A, at a more policy level.
Well, I, I, I think, look, Medicare pays for breast
navigator. Nobody pays for a cognitive
navigator. You have to hire somebody.
(50:20):
That's one of those costs that could help a lot right now.
They just get it covered. So the I knows with Alzheimer's
you need outside help them. However he defined it that I'd
sign help get paid to Medicare. It's typically them or or
whatever the government program,you know, it's society taking
care of the least of us. Every religion has that, every
(50:41):
ethical system has that. So that is a good start, whether
it's Medicare, Medicaid, or something unique for this
disease. And the financial burden isn't
so heavy. And then putting more into
research. And I love the idea of dropping
the word dementia. So it helps build words and
language of dignity and the ideathat we're, you know, you know,
(51:01):
respect for elders and those in our community.
I mean, that's to me my most immediate.
And that's not necessary a policy thing.
That's what something that each of us individually can advocate
for and just change our own personal behavior toward older
individuals. I think we, we have really
failed the aging population in this country in so many
different ways. And then, you know, one that we
(51:23):
just don't respect aging in thiscountry.
We think aging is just, well, it's expected you're going to
have cognitive and physical decline.
So there's nothing we can do about it.
Would just throw some pills at it.
And we spend billions of dollarson research that's ineffective
in terms of treating these. I know I had Charles Pillar on
recently who did an expose on the research that, you know,
(51:46):
basically is falsified research in Alzheimer's where they've
spent so much money chasing down, you know, just falsifying
data to support the amyloid hypothesis and not really
looking at what what can we be doing not only to treat the
disease, to prevent the disease,but more importantly, how do we
(52:07):
deal with it once it happens And, and we spend so much money
on the treatment side of things.It's.
About really dealing with how how we manage the conditions.
And we, we need to keep investing as a society in in
research and in studies. And I think that's one of them
(52:28):
and being willing to do that and, you know, respecting, you
know, dignity, you know, and butthat's policy too.
It's not just government policy,it's also social policy.
And, and, and we have a narrative going on into the in
(52:48):
our society that works at Gintelright now.
And you know, everybody has a role in trying to help this
change. Kind of last thing, where can
our listeners learn more about you and find where you're
performing? Do you have a website?
Yeah, Dementia man.com would be is a place and it has all sorts
(53:13):
of things. We even have merchandise now we
have a you know, puzzles are great.
You can so I'm and it has a calendar and that's a good, you
know, calendar. Is there the everything you need
to know about Dementia Man? I do a week, I do a weekly
podcast and it's on YouTube and on the last page, if people want
(53:34):
to sign up to get, you know, an e-mail, let the blogs up, they
can do it on the, the contact mepage is a place to sign up.
We'll provide links to all of that.
And yeah, I'm going to have to get you back on here.
Let's kind of get some regular updates in terms of, you know,
what's happening. Are you going to change your
name when we get, you know, we ban the word dementia?
(53:56):
You're going to have to be you. Know you're not the first person
to notice. In fact, early on somebody once
said, if you hate that word so much, how come you call your
play dementia man? And well, the answer is that's
the word that's out there for now.
And I'd love to be able to call it the cognitive decline man or
(54:19):
the CN, not CNN. Well, we'll come up with the
word, the cognitive, the cognitively impaired man, the
memory trip, the memory journey.I don't know.
We'll work. On that by the next time we have
you on here. We'll have a contest and the
people have to the window will get a title on the play.
(54:40):
How's that? Sounds great, but this again has
been awesome. I'm looking forward to actually
sharing this episode with my students and helping them to
better understand the D word a little bit better.
And, you know, just keep doing what you're doing.
You know, normally, and it sounds kind of odd to say keep
aging well. But, you know, despite the fact
(55:02):
that you are battling this degenerative disease, I'd have
to say you're aging well. But you know something, Jeff, I
love the title because it is thegoal.
No matter by definition, we're going to age.
Age means we get older and they may and we all end have the same
end. We can do every part of that
(55:23):
well, if we work at it, if we have a models available, if we
talk about it. And that's what you offer.
And you too. Yeah, just keep it up.
All right. Well, you have a great rest of
your day. Really appreciate the
conversation. You've warmed me today.
Thank you. Thank you for listening.
(55:44):
Hope you benefited from today's podcast.
And until next time, keep aging well.
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