79 year old Sam Simon could tell that his memory was fading and finally was diagnosed with early-onset Alzheimer's disease.  Faced with this, Sam has dedicated himself to awareness of what Alzheimer's is, how it makes you feel, and how you could and should embrace people experiencing this incurable disease.

Sam started his career in Washington, DC as a lawyer for Ralph Nader’s first advocacy group. He then spent 25 years as head of a public affairs firm. In that work, he was often in the news, with appearances on Face The Nation, Phil Donahue Show, Oprah Winfrey Show, Good Morning America, and many more. His first play, The Actual Dance, Love’s Ultimate Journey Through Breast Cancer, has toured from 2013 to the present. In 2021 The Actual Dance was turned into an award-winning biography.  His new play is called Dementia man.

On this episode of Home Care Heroes and Day Service Stars, Sam performs a preview, that he calls the "Showcase Version" of Dementia Man and then answers questions about his experience and the show.

If you'd like to learn more about Dementia Man, or even book a performance in your town, please visit www.dementiaman.com or email Sam and his wife Susan at sam@dementiaman.com.

Home Care Heroes and Day Service Stars is produced and sponsored by Ankota - If you provide services that enable older or disabled people to continue living at home , Ankota can provide you the software to successfully run your agency. Visit us at https://www.ankota.com. 

Here's a Transcript:

00:00

79 year old Sam Simon has been driving positive change his entire life. And now that he's been diagnosed with early onset Alzheimer's, that's not changed a bit. In this chapter of his life, he's dedicating himself to helping people better understand Alzheimer's and other forms of dementia. This is a podcast you're going to learn something very important from.

00:23

Welcome to the Home Care Heroes and Day Service Stars podcast. If you provide services to keep older or disabled people living at home, then this podcast is for you. Now, here's your host, Ken Accardi. Well, hi, and welcome to the next installment of the Home Care Heroes and Day Service Stars podcast. Today, you know, I often say that we have a special guest. Today, we have an extremely special guest. I actually met our guest. His name is Sam Simon.

00:53

Last week when I was at the conference, the National Adult Day Services Association Conference, that was in Atlanta, and I had a great chance to meet Sam and to speak to him briefly. But I was also able to participate in a one man, one act play that Sam has written. And the play is called Dementia Man. And by means of backgrounds, Sam himself is actually experiencing early stage Alzheimer's.

01:22

And when confronted with this in his life, he actually, what you'll learn is that he decided that he wants to share his experience with other people. And that inspired him to create the Dementia Man existential journey, which is just a really great show. So what we're going to do is we're going to have Sam present what he calls the showcase version of Dementia Man. So Dementia Man in its entirety is about a one hour.

01:51

experience. And today the showcase version is going to be shorter. And then after that, I'll have an opportunity to speak with Sam and ask him some other questions and get from him other things that he'd like to share with you. And also if you're moved by this experience as I was, you might even want to book Sam and his lovely wife Susan to come and present this live where you are. So that's the opportunity that you have.

02:15

So the one or two things that I'll say before I give the floor to Sam himself is that number one is that because of the early stage Alzheimer's that Sam is experiencing, he is going to hold his script and he'll have that with him during the experience. And then the second thing is that the play here is about Sam's actual life, but there is one thing that you'll hear about, which is a

02:40

a trip to Europe and that's actually not something that really happened in real life. So that's the only portion that is not true to reality in Sam's story. So with that and with Sam's permission, I am going to hide my camera. By the way, I know that the majority of you listen to the Home Care Heroes and Day Service Stars podcast as a podcast. So maybe you're driving to appointments and you're listening and I think the experience is going to go perfectly well.

03:07

in that venue. But if you do, in this case, maybe you don't even know this, we always put the podcast out on YouTube in a recording form. So what I'm going to do here is I'm going to hide my camera. And this way, we're going to be able to give the full screen to Sam. And those of you who are experiencing this on YouTube, you'll, you'll see Sam and get to know him better. And I think you might get a little bit more out of the experience from that. So right now I am hiding, I'm stopping my video.

03:36

And let me introduce Sam Simon and the showcase version of the Mention Man. Well, I'm going to thank you very much for having me first. And then I'm going to stand up and we'll see a little bit of me moving backwards here. And you'll occasionally see, I see that it white lights out sometimes, but you'll hear me for the whole thing.

04:03

So this is how it ends. Oh, I'm not going to die, at least not right away. I'm just going to transform, become someone else. Alzheimer's disease. That's what I got. There is no doubt. And there is no cure.

04:29

Oh, damned, I'm here again. I can't believe this place exists. Nothingness.

04:39

No light, yet I have eyes. No sound, yet I have ears. No smell, no taste, no feel. No touch, my feet move, yet there is no floor. There must be a door, there must be another side. There has to be!

05:02

I know I'm not dead, or at least I think I know I'm not dead. Wonder what dead feels like.

05:12

Oh, I went, wait, wait. I remember I was about to start a presentation of my new play, a showcase version. I remember that I need to speak my opening line. Okay, my opening lines, my opening line. No, no, dammit.

05:35

I hope I can do this. Maybe if I can find the first word, I can remember my lines. All right, so the first word, the first word. No, no, damn it, where am I? What's going on? If this is how I will be, if this is what my life will be like, disappearing for moments, that feel like years into infinity over and over again.

06:06

What are my choices?

06:10

What should I do? Maybe, maybe I should just exit. Leave while I'm still me, while I still know my life story. End it all right now. So Susan and I fly all the way to friggin' Switzerland. We have to be on the same page. Hell, we talked about it for hours and hours and hours.

06:36

We saw a counselor and talked to her for hours and hours and hours. We bought two airline tickets. One was round trip. We paid the outrageous fee for this death facilitation place. They call it accompanied suicide. Now Susan tells me I don't have to do this. You can still change your mind, Sam. I love you. If you let me choose, I choose

07:06

to keep you however you are. You will never, ever be a lesser person to me, please. Let's just go home and make the best whatever time we have left.

07:20

So look, if I don't take a cup of poison, I don't end my life there. Right now, what's gonna happen to me? Does the present Sam just vanish, go away, disappear into infinite nothingness, become a different person, be different Sam, or an overwhelming burden on everyone in my entire life?

07:45

I wonder how long this condition has loomed inside of me. When do everyday screw ups become symptoms of something worse and how do you tell? Have you ever driven on the wrong side of the road or the long way down a one way street? The first time for me was around 2016 and it scares the crap out of me. I must have simply been distracted. And yet when I tell others,

08:15

What happened to me, I just get, oh, I've done that too. So I write it off as something that happens to everyone. Then a few months later, something entirely new. You see, for every Friday at noon for five years, I would have lunch with my best friend Larry at a local, I live in McLean, Virginia, restaurant.

08:41

This time, you know, it's only a mile from my house. This time, my friend Larry drives home by himself. I get in my car and as I'm leaving the parking lot, I lose cognitive awareness. I'm in my car. It's like a floating machine as it rides down the road. I'm a spectator now. The street signs and building signs jump up out in front of me. I don't recognize the street names.

09:09

And why is a 7-Eleven store sign sitting on the front of my car facing my windshield? It's somehow, somehow as this floating machine goes down, I recognize.

09:24

and left turn and I turn and off the main road I pull over, I close my eyes, take deep breaths and when I open them the world has returned to normal. I don't tell anyone what just happened. I drive home very, very slowly. What really scares me though is something new and weird. It is the appearance one day in the center of my brain.

09:54

a infinite black law. It's like an entrance through which I am sucked into infinite nothingness. I eventually name it the nothingness place. It's much like deep space and then hides the answers to everything I want to know. Names, dates, words, places, everything.

10:22

And I disappear into this place at random moments, over and over and over again. I'm scared and I know I need help. So I start with an appointment with my internist. Now, I've been complaining about my memory for a couple of years, and my internist seems to think that I'm an over-educated man, overreacting to normal aging, and maybe a small dose of mild depression.

10:53

And then I tell him about the nothingness place, and he immediately schedules me for an appointment with the neurology practice with Dr. Howard. And then when I tell Dr. Howard about this nothingness place, he schedules me for every electronic study of the brain that exists, a sleep study, an MRI of the brain, an EEG studies up the gazoo. And finally,

11:22

gold standard of cognitive testing, a neuropsychological exam. It's five hours long. And it takes six months to get through all of these tests. And each test makes me more anxious. Finally, I get a call from the neuropsychologist that test results are in. I show up, he hands me a 15 page report filled with medical jargon. Then he directs me to the last page.

11:52

and tells me I have MC on. I am mildly cognitively impaired. I have no idea what that means, though I am delighted. And as soon as I leave his office, I pump my fist. I pump my fist, yes, yes. I'm not making this stuff up. I am not normal, I knew it. And I can't wait for that next visit with Dr. Howard to get the full nine.

12:22

Diagnosis, what's causing my impairment, treatment plan, and a path to full recovery.

12:32

My wife Susan insists on joining me for all my future appointments. And when we arrive to Dr. Howard's, there's a 20 minute wait. He bustles into the treatment room. He doesn't explain why. He's holding the MRI of my brain. Sits down, puts the MRI up against the light.

12:55

And he seemed very pleased. He says, look, Tim, I know you got MCI, but look, there's no black tangles in your brain. So Susan and I stare at him. And we're all right, we don't see him and that looks like, you know how he's talking about.

13:12

Then he starts to leave without saying anything else. And then I stop him, wait, wait, Dr. Howard, wait, what does this all mean? What's my prognosis? What's my treatment plan? How am I gonna get well? He turns, he says, there's only one road for you, Sam. Down, you'll only get worse. Oh, here, let me give you a prescription for Aricep. And then he ends.

13:45

As soon as Susan and I get back home, Susan takes charge. She calls a friend of hers whose late husband had had a cognitive disorder. Her friend recommends their neurologist, Dr. Banks. We happens to have an office around the corner from where we live. And using Susan's friend's name, we get the appointment. First availability, six weeks.

14:14

Everything now seems to take at least six weeks. We arrived together in a completely different experience. He tells us, this is Dr. Banks talking to us. I've reviewed your medical file and I agree with the MCI diagnosis. What we need to find out now though is a way for you to get better, to get one of these PET scans with contrast.

14:44

They're very expensive. Most people don't get them, because they're typically not covered by insurance. I do have an idea, he says. I know the director of the University Memory Center, and if you can qualify for one of their drug trials, then the sponsor of the drug trial will pay for the scan. Well, it takes another six weeks. We arrive at the University Memory Center. And then...

15:12

Six more weeks we go through more testing. And finally, I get the scan. And the results aren't given to us, they're sent to Dr. Banks, his our new neurologist office. And this time when we arrive, we're invited into his private.

15:34

He's looking down at a piece of paper sticking out from a file sitting on his lamp.

15:42

And he says, I think we're at a new diagnosis. And then he mumbles, early, stage Alzheimer's.

15:51

There is an infinite moment when the universe just stops. We're unsure of what to make of it. He doesn't go into any detail. However, he does give me a prescription for galantamine and says it could take five or maybe even 10 years before things get a lot worse. And today, the end of September of 2024.

16:18

I am now at the six year mark since that initial MCI diagnosis. I have since learned more about Alzheimer's and I do sense that things are getting worse. It raises the stakes on what to do next. What are my choices? One is Switzerland, accompanied suicide. And if I want to do that, I need to decide soon while I'm still competent enough to get

16:47

informed consent. Or maybe I should stick around and figure out how to lead a meaningful life as a deeply forgetful and confused person. Maybe I can continue to cause trouble and advocate for the world to accommodate me as I will be, as I am becoming. You know, I've been a troublemaker most of my life.

17:16

Right out of law school in 1970, I went to work for Ralph Nader. Yes, that Ralph Nader. Some called us Nader's Raiders because lots of trouble back then. And I spent most of my career advocating for consumers and people with disabilities. I served on the board of directors of the World Institute on Disability for 15 years. I worked with folks like the late Judy Heumann, who's now known as the

17:45

mother of the modern American disability movement. And the late Frank Bow taught it, Frank was a professor at Hofstra University. He was deaf and he's now known as the father of American disability policy. We all advocated mostly for accommodations under the ADA for people with physical disabilities.

18:14

So maybe I should stay around and cause enough trouble to get the world to adapt for people like me, cognitively impaired. Like, of course I'm worried. I know this mind stuff is different from wheelchairs. I know that. How do you accommodate a man who just stares into the sky or who lives in a different universe?

18:42

Of course, I'm not there yet. What about the other changes in me? Agitation, for example. Recently, Susan insisted we talk to a social worker about my growing agitation. It was over Zoom. Susan tells the social worker with me sitting right next to her, that I on occasion scare her and she's afraid I might hurt her.

19:07

I was shocked. I would never hurt my wife, my love for 58 years, Susan. I would never knowingly do that, and I don't want to create the circumstances where that might happen.

19:21

forces me to again imagine an early end to my journey. Protect Susan, make it easier for everyone around me. Don't be a burden. Imagine us, Susan and me sitting in a room in Switzerland ready to drink Kappa poison with Susan right next to me.

19:42

You know, maybe doing that to Susan is as wrong as if I did hit her. Wouldn't her pain be even greater? As usual, Susan is right. Let's just take that Switzerland option off the table. And then with the help of family and friends, and maybe even people listening to this podcast too, see if there aren't a few more meaningful years of safe troublemaking left in me.

20:12

Thank you so much for listening and watching if you are.

20:17

Fantastic. So Sam, why don't you come back and sit again? And I wish that I had a studio audience here who can who can applaud and share their appreciation for what you shared with us. It was very, very special and moving even more so the second time. And yeah, and I do think that this is going to move a lot of people. So so thank you again, one more time. Are you okay to jump into some questions? I'm ready. Do I want to see you? Do I get to see you again?

20:46

Sure. Thank you. I'll share my own video. Sorry for the gloomy day in Boston. For those of you who are seeing us here, it's usually a little brighter, but you know, the weather is out of our control. So Sam, let's start with just some some basic facts. So when did you first get this feeling that you weren't quite yourself and start going down this path of medical visits?

21:11

You know, it started a lot longer ago than I at first understood it. There are people often say, once you're diagnosed, you'll look back and see it coming. And I mean, I don't even know the year, maybe around 2010 or earlier. I had complained to my longtime internist that I thought I was having memory issues. And he sent me to a psychologist, not a neurologist.

21:41

And I was running the company, I had 50 employees, and he gave me an antidepressant thinking I was just overstressed from work. It was almost a decade later that when I finally told, as it's in the play, talked to my, started experiencing this nothingness place, which was real, it was like half my brain was in, was just black, dark, and I would go into that looking for information.

22:11

And I went to see that first neurologist portrayed in the play. We didn't go back to him. It was a terrible experience, which is not unusual. So it was really driving on the wrong side of the road a couple of times, getting lost and this black infinite nothingness. I went to a new internist and was able to get, and it's hard to know exactly what it was. So I knew I'm mildly cognitively impaired, but finding out why was

22:41

hardest part and the rest we got the scan and I'm amyloid positive but tau negative. Which is I don't know if people know those details but that's good and I actually am now in a drug trial and the drug that I'm trialing is designed to prevent the tau from forming.

23:09

Those are like black worms in your brain. And they are more advanced, and the disease moves more rapidly. So if they can work, that will help me live longer. Got it. Well, thank you for sharing all that. I guess just one not even a question here, but I do have a small connection to McLean, Virginia, where you live. So my first job after graduating college was I worked for a GE in the DC area. We actually lived.

23:39

in Alexandria and then in Springfield, Virginia. And my wife and I actually got married in McLean at the St. John's Episcopal Church over by, you probably know where that is, over by the CIA headquarters, so. Well, yes, I do know exactly where that is. Now, is that the one that has a labyrinth on it?

24:03

I'm not sure. It's kind of interesting because we then moved to Massachusetts after working at GE Healthcare in Wisconsin. I know that our church in Massachusetts has a labyrinth with them. I'm not sure. I may become a labyrinth lover, by the way. And I walk them whenever I can. Got it. All right, so let's kind of go up to a hardball question here. So you do describe this as an existential journey.

24:31

And you did share that this trip to, I think it was Switzerland, didn't really happen. But, you know, when you found out that you had mild cognitive impairment or early stage Alzheimer's, I mean, is that something that actually went through your mind? Is that, you know, hey, maybe I shouldn't be here. Maybe I should prevent myself from causing burden on people or maybe hurting Susan. And are those true emotions?

25:00

So here's how it happened quickly. Anytime you get a terminal diagnosis, I'm not that different than most people. It's a shock for Susan and myself. We have two grown children. They're fully aware and they're all close, but you know, close family. But he's, what do I do? What should I do next? And I had the misfortune of listening to a

25:28

podcast of an author who I will not mention because I don't want to have anybody else buy her book. In which she described how she and her husband who had been recently diagnosed went to Switzerland and he did kill himself. It was a nanosecond. That's what I say. I said, should I do that? And that pissed myself off. Sorry for the language. I was so angry that I would even think of that.

25:57

But I've since become aware that this is not that unusual and that there is a broad negative that life with the disease is not worth living. Now, I had already written a pre-display. I had been in the position of caregiver to my wife, Susan, who is now fine, but she was diagnosed with advanced breast cancer. And the doctors pulled me over at one point in the journey and said, get ready, Sam.

26:27

We don't think she's going to make it. So I was on the other side of that. And so I was already performing. My artistic community, my friends who saw my other play and with whom I worked, said, Sam, write about this. Encourage me. Write about it. And that's what brought me. But it's not easy. Yes, you do have these thoughts. And this can become financially devastating to families.

26:55

And I understand, there was another gentleman who I knew well in his obituary mentioned that and quoted him saying, I don't want to be a burden to my family. So our country needs to fix that. People shouldn't have to have the choice of bankrupt the future of my family, my children, or should I go kill myself? We need a system that sustains and supports.

27:23

People when they have this misfortune, not their fault, and even if it were, to live a dignified life to normal end of life. I know that some people believe in a complete suicide. And my two cents or 50 cents is, I hope that going through the full term of whatever happens to me and I don't know.

27:52

will not only give me more years of meaningful life, but then maybe contribute to finding a cure to the disease. I'm gonna say something really controversial. I think the decision to commit suicide is a selfish decision. That it's about what makes me feel good, what's good for me. And on footnote, we need to fix the financial burden of that decision, but I'm just staying alive.

28:21

I hope we do and I hope insurance will help people work their way through. And even if I become someone else, my journey helps discover new things for others in the future.

28:38

Yeah, I agree with you that that would make it all worth it. And I think what you're doing is really helping people. So I guess I'm going to move to a fun question for a minute here. So one thing later in the show, you refer to this new wave of generative artificial intelligence. And you say, well, maybe there could be a chat GPT robot that maybe tells my story and things like that. So I guess, I mean, if this is something that you felt like it's been.

29:06

coming on for quite a while and that sort of thing. It looks like, I would say the average person that I know that's maybe not in technology probably wasn't even aware of the existence of chat GPT until probably sometime in 2023 in the past year. And, but here it is, this is something that you obviously know what it is and you have some thoughts on how generative AI can help with dementia. So, so kind of, I guess my question in all that is

29:37

How are you kind of living your life knowing that your memory and your cognitive capability is diminishing, but you're also keeping up with the latest and newest things that are happening? How do you kind of juxtapose those? I'm going to answer it slightly differently, though. It'll answer it. So we are given a choice of how to experience life with a disease. And Susan and I just had our 58th wedding anniversary.

30:06

And we had to have, we had a discussion. And the discussion was, do we sit here and on our 58th anniversary and say, I wonder if we'll make our 59th. Oh, it's gonna be a tough year. Or do we, or how do we make our 58th anniversary feel like the first? How do we have to have intention about

30:35

searching and finding the joy, knowing that there are these other moments and then working to say, whatever happened. You know, on our first anniversary, something could have happened to us. So yes, it's out there. So even though, you know, I happen to have had a background in technology. Some people, like I had a company, some people thought I broke up AT&T and a phone company. I don't know. Not all your listeners know that there used to be only one phone company. We are a technology advisory company

31:05

for a lot of companies, even for some of the phone companies, and how to use the technology. So I believe that we look for the new things and if we can imagine, you know, I'm gonna later today, I'm gonna talk to a technology company, for example. I have a phone company, I'm using my own past sort of infamy in this field to get a...

31:34

high level. And I'm going to ask this company if they can stop, they can create a version of their product that doesn't change so much, that they can sustain an old product so that those with cognitive issues and have used it before can continue using that. And I advocate for ideas of adaptation to our everyday world.

32:02

that recognizes that there are some people who can't fully be in it as they used to be. And what can we do? Just like we created curb cuts, people in wheelchairs. So they did it for people in wheelchairs and did it for folks with baby carriages and the UPS and the FedEx delivery people. And their gullies now have an accommodation. So by looking to adapt the world to work.

32:30

well for those like us, might also help everybody else. So I don't know if I even answered the question, but it's how I got to this idea. Well, what if there were such a they could would know me well enough that it could talk to the rest of the world for a while as I would have or then on stage, I say or whispered in my ear my line, so I don't have to carry that script. But yeah, I believe that

33:00

You know, there's some people who have said that the ADA ends at the neck. And we can't imagine adapting. And I advocate for cognitive navigators. I said, I call it CN. There are curb cuts. There are people who would be with us or maybe simply available. Like in the airports, more in Europe today, even. There is big yellow flower behind a desk. You go up to that.

33:28

And they arrange for you to be helped onto the flights. Because you have identified that the yellow flower in Europe is signs of a cognitive disorder. I actually found out that Dallas Airport and National now, if I go to the help desk, will give me a green with yellow flower lanyard to wear so they'll know folks at the gate and elsewhere know I need extra help, because we can get confused.

33:58

Susan generally goes with me as well. You know, this disease is awfully complicated and whether I get at today because they're not looking at me, they're talking to certain women. So there are beginnings of this awareness. And I hope my play and you for bringing it to others, help all of us begin to recognize that we need to address this, the baby boomer generation and their children. That baby boomer, those two generations together.

34:27

are massive. And this journey is going to become hugely extensive and pervasive in our society. Got it. Well, I think, first of all, you answered my question brilliantly. So thank you for doing that. So I think we're going to, and I will say it's kind of interesting, a lot of times using software and making software in our company, you sometimes get that, hey, we have a new experience. Do you want to try it out early? Or?

34:57

or they're going to switch you over to it in a month or in 60 days or something like that. So I could definitely see that when you have a technology, you know how to use it, and you have an impairment, that it might be nice to have them keep a version that is more stable. So I think that's a brilliant idea. Well, because we also, I can still use, I don't want to use the name of the product, but I can use this product because I've been doing it for 20 years. Sure.

35:23

I do have a new version on one of my machines, and several of us, we've had this conversation. It's just so hard to figure out. It didn't used to be. I used to be Mr. Te... In fact, the Washington Post did a profile of me calling me the gadget guy. I raised advanced. And now I struggle with the basic stuff. Here you go.

35:47

All right, so I guess time wise, I think time flies when you're having fun. I think we're going to move to close. So I have a few ways that folks could get in touch with you. And one way would be the website, which is going to be www.dementiaman.com. Dementia man is all one word. And so I guess my other question is, though, I do have an email for you and a phone number, which would be best to share both or?

36:17

Let's do the email and then we can always connect. And I'll say it. It's, you know, sam at dementia man dot com. And by the way, even though it says dot com, I do this work as a nonprofit. I'm not corporately one, but there is a an organization called and it's all on our website, Fractured Atlas, which tax deductible contributions could be made to support.

36:46

And our mission is to, anybody and everybody who needs to see this show has an opportunity to do so. And I do it in person. It's an emotional show. I'm not comfortable in just putting it up and anybody gets to watch it, because there's a lot about that other option in it. And I don't want to be unmoderated and any particularly young people who might be suicidal.

37:16

think about this. Yeah, for sure. So, okay, so great. So, I mean, if you're moved by Sam and his journey and this existential journey as is described in the same way that I have, and you're interested in learning more or bringing this to your community so more people can experience it, then yes, either the website, the www.dimensionman.com or you can email sam at dimensionman.com.

37:42

And with that, let me one more time say a great thanks to Sam Simon and thanks to all of you for participating in this episode of Home Care Heroes and Day Service Stars. Have a great day. Thank you. Thank you so much. Thank you so much, Sam.

Thanks for joining us today on the Home Care Heroes and Day Service Stars podcast produced by Ankota. You can listen to back episodes by visiting for homecareheroes.com. That's the number four, then the words 4HomeCareHeroes.com.