Greg O’Brien was 59 years old when diagnosed with early-onset Alzheimer’s disease, unmasked by doctors after suffering a serious head injury. The award-winning journalist, husband, and father of three, lost his mother, father, paternal grandfather, and paternal uncle to Alzheimer’s.
Greg learned from his beloved mother, Virginia, what it means to truly live with Alzheimer’s, and it was her inspiration that prompted him to write and speak openly about his own diagnosis. Ever since, Greg has been chronicling his thoughts, addressing medical conferences and Alzheimer’s support groups around the world. In 2014, Greg, now 72, published a memoir called On Pluto: Inside the Mind of Alzheimer’s, which won the 2015 International Book Award for Health.
The memoir is the first book written by an investigative reporter embedded inside the mind of Alzheimer’s, chronicling the progression of his own disease. Lisa Genova, author of the best-selling Alzheimer’s novel, Still Alice, whose screen version won an Academy Award, wrote the foreword. “If you’re trying to understand what it feels like to live with Alzheimer’s…then you need to read this book,”
Now, a new documentary feature film, Have You Heard About Greg? A Journey Through Alzheimer’s with Faith, Hope and Humor, about Greg’s life opens nationwide May 6, 2022. (Written and coproduced by Greg O’Brien. Directed and coproduced by his childhood friend, Steve Ecclesine.)
Powerfully told, HYHAG puts a human face on the most terrifying disease of Alzheimer’s and other forms of dementia.
Don and I spoke with Greg and Steve about the inspiration behind the documentary and why its message is so very important.
(Greg is a board member of UsAgainstAlzheimer’s in DC, has served on the national
Susie Singer Carter 0:01
Hey, this is Susie with Love Conquers Alz. And before we start today's episode, I just wanted to make you aware of a brand new positive podcast called Goodnix.
Announcer 1 0:11
Goodnix explores the journey and meaning of doing good in the world.
Announcer 2 0:15
I get to choose every day when I wake up, whether I'm going to work for a fortune 500 and make a ton of money or work for the movement that is the Ark of moral justice.
Announcer 4 0:28
But I realized that I also had an obligation to weaponize my privilege one day, we said, okay, the city's not going to do it, the state's not going to do it. If some large corporations not going to do it, why not us?
If there were enough of you, if you were organized enough, if you were loud enough, it would be too difficult for them to ignore you.
Announcer 1 0:50
Goodnix., Created by Jeff Lightner, hosted by Annalisa Malay. available everywhere you listen to podcasts.
Don Priess 1:04
Alzheimer's sucks, it's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is love conquers all is a real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now here are your hosts Susie Singer Carter, and me, Don Priess.
Susie Singer Carter 1:38
Hello, everybody. I'm Susie Singer Carter.
Don Priess 1:40
And I'm Don Priess and this is Love Conquers Alz. Hello, Susan.
Susie Singer Carter 1:45
Hi Donald. How are you?
Don Priess 1:46
I'm, you know, I'm good. I mean, you know, I'm good. I'm here. I'm good. How are you?
Susie Singer Carter 1:52
I'm great. And I'm great and bad at the same time. Yeah, yeah.
Don Priess 1:57
A lot going on.
Susie Singer Carter 1:58
It's been a rough month. And my mom is, was in and out of the hospital. And we've been through a whole hell a whole hell of a hell. It's been. It's been pretty, pretty terrifying. And now she's back where she belongs in the, in the residence where she's where she feels most comfortable that she's used to and, and she's, she's making her transition. And it's something I've been afraid of for a very, very, very long time. And, and now I'm feeling feeling like a rock star about it. I feel like I'm honored to walk her through that door. And I w ant to be there with her. So...
Don Priess 2:39
and you're able to do that now. I mean, with COVID you you've had so little contact with her over the last two years.
Susie Singer Carter 2:45
Don Priess 2:45
And and now you know, despite all the hell that has been going on, which is a whole nother story and subject, but you you've been you're able to be with her every day and put your head on her shoulder and, and whisper in her ear and tell her that you love her. And that's the most important thing at this point. So -
Susie Singer Carter 3:06
And sneak liquid into her mouth when the nurses aren't looking.
Don Priess 3:10
Don't tell anyone. But oh, she likes that.
Susie Singer Carter 3:13
Oh my God. She literally goes, "Ahhhh."
Don Priess 3:19
Well, I think we should get we have two amazing guests today. And I just get to it. And I'm going to tell you a little bit about them. And then we'll say hello. So you ready, Susan?
Susie Singer Carter 3:30
I couldn't be more ready.
Don Priess 3:32
All right, let's do this. Today our guests are truly amazing. As a career investigative journalist Greg O'Brien has chronicled the stories and journeys of countless others. But his diagnosis of early onset Alzheimer's has led him on a path of self discovery and on a mission to shine a light on this insidious disease. His lauded book "On Pluto: Inside the Mind of Alzheimer's" is a powerful and intimate firsthand account of Greg's own journey with Alzheimer's. And now he has joined with his lifetime friend, filmmaker Steve Ecclesine, to create a beautiful, poignant and personal documentary, "Have You Heard About Greg?, an important, enlightening and candid look at Greg's remarkable Odyssey.
Greg O'Brien 4:11
There are millions of people who are undiagnosed who are walking around on the path to Alzheimer's.
Greg O'Brien, has written a book called "On Pluto: Inside the Mind of Alzheimer's"
Lisa Genova 4:23
Anyone who has ever chatted with Greg knows that that's a real conversation and it's heart to heart at soul bared and it's funny and it's irreverent and it's loving and just brutally honest,
Greg O'Brien 4:37 (TRAILER)
I believe that God, first of all has a sense of humor. And God will talk to you in language that you just understand. Okay, now I lost my train of thought. Oh, have we met before? Greg O'Brien. Damn pleased to meet you. We have one foot in the next realm in one foot here. And I'm just waiting for the Lord to pull me over the next realm. And he keeps saying not yet I go, Well, how about today? Not yet. We're not done.
Don Priess 5:17
We are honored to have them both with us today. Please welcome filmmaker Steve Ecclesine and the inspiring Greg O'Brien. Welcome.
Susie Singer Carter 5:25
Hi Steve and Greg,. Thank you for coming on our show. We're so honored and pleased to just be in your world today. So thank you.
Steve Ecclesine 5:36
You're welcome. We're excited to be here.
Greg O'Brien 5:38
Susie Singer Carter 5:39
Well, thank you. Thank you. I mean, I think, you know, this is such a such a rich and fertile topic. And I've wanted the opportunity to talk with Greg for... it feels like a lifetime. I feel like I know him from reading so much of his writing. I know, Steve from watching the documentary that your mom suffered with Alzheimer's, as did Greg's mom, as does my mom. And it's, you know, and I did a short film on my mom with Valerie Harper. And I know how hard it is to relive sort of that, put yourself back there. And in some ways, it's celebratory. And in other ways, it's, it's, it's, you know, it's it's heartbreaking, again, to look back on it. But I found it, what I didn't know about you is that your mom had Alzheimer's, I didn't know that. I didn't know that she was so dynamic, like my mom, a five foot five foot package of Dynamo, like my mom. And that we shared this, you know, this such an affinity and relationship and connection with our moms. So I found that very, very warm, and I feel closer to you. You know, it is that's that's what happens with this, as being a caregiver it, it makes us kind of a, an extended family. Because we have an understanding. Right, right?
Steve Ecclesine 7:00
It's true. You've been where I've been, or you're going through what both Greg and I have gone through with our mothers and watching them. And, uh, you know, there's a point in the film where I think I say that, Greg, maintains that they're up there waving at us, they're basically up there, thanking us for our contribution to the cause. So anyway, it's, it's, this has been a privilege from the beginning, from my point of view. And it's funny because you mentioned lifelong friends and, and in a way, Greg and I are lifelong friends, because we were there together at the beginning. And we spent our first 18 years in pretty close proximity from kindergarten up through 10th grade. And we got to age 18. And we both hit our respective diving boards. And Greg went off and became an investigative journalist. And I went off and became a filmmaker. And we didn't give a thought about each other over the last 50 years. It was at my 50th high school reunion three years ago, where a childhood friend said, "Have you heard about Greg?" And in those five words, he changed my life. And I said, Greg, who? He said, t he Greg O'Brien, you know, baseball teams, Altar Boys Catholic school, I said, Sure, I remember him. I've given a thought about them in 50 years. And he said, "Well, he's written this book called "On Pluto: Inside the Mind of Alzheimer's. And since my mother had died of it, I immediately got it, read it. And we basically I connected with Greg and and what you see now three years later is a movie that I think is going to touch a lot of people who see it both people who are already in the fight and people who are on the verge of getting into this fight against this pandemic that has been pushed to page 27 in the newspapers because of COVID. And hopefully we'll come back and we will achieve our goals of what we started out with which was A) to get people talking about this disease again, B) to try to increase the funding as best as we possibly can and see to get people to pay attention to their own brain health. That when they go in to get their next checkup, talk to the doctor and ask him about from here up instead of just here down.
Susie Singer Carter 9:41
Right to take it one step further is to redefine how we look at this disease because it's it's it's often dismissed as you know, which, unfortunately, words get get bastardized and they get they get, you know, they get connotations attached to them that you can't get rid of. Like the word demented, you know, and that becomes part of our of the lexicon of our medical system, you know, where someone is demented, and therefore, they're not worthy, or they're just really not here. And so I aim to change that because I know they're still here. Because I talk to my mom, every time I'm with her, whether she can speak or not.
Greg O'Brien 10:26
Well she hears you in your heart, I believe, which is the
Don Priess 10:32
Absolutely!! It's something we always said, you know, when when people said, you know, "why do you go visit? They're not gonna remember, you know, 30 seconds after you leave, they're not gonna remember." We say that has nothing to do with remembering here. It is all about remembering here.
Greg O'Brien 10:45
Well, yeah, you're so right, my mother, and beautiful woman, Irish lady and gave birth to 10 kids. And she, in her journey taught me how to write and speak from the heart. I was a caregiver and then ended up with a diagnosis. I had two serious head traumas that I shouldn't have survived which doctor said, unmask a demon in the making. And, and, but she taught me while she was alive, how to write in and speak from a heart, the place of the soul and she is the hero of my life.
Susie Singer Carter 11:25
Indeed, Greg, I I've read all your blogs and your and your book and everything, and I see I feel your mom and everything that you write, I feel also very Kismet to your mom in a way. Just the the way you describe her affinity towards the color yellow and how significant that was to to her. And and and and you know, in turn to you and your and your siblings, at least you and your brother both went out and got Jeeps, yellow Jeeps? Just to make up...
Greg O'Brien 11:54
Yeah, we would always talk about the color yellow and and my wife would be driving around and when I don't not allowed to drive anymore. And she would always say, "Oh, look at that yellow car. Look at the... My wife was there. What is it with yellow ? So I started looking it up. If anyone does yellow has a lot of good definitions. But one of the definitions, it's the color of angels. And I'm an imperfect guy, Irish Catholic, more evangelical, we all find our faith in the wrong way. But I felt in my heart. And my mom is on my heart today helping me with my writing that the angels were coming for her.
Don Priess 12:33
Susie Singer Carter 12:34
It's so beautiful. It's so beautiful. Because I and also it, it was a little bit like it took me aback because yellow has always been my favorite color of since I was a little girl. I've always it's that if that is my color, and it makes me happy. And it's always made me happy. And it it brightens any room. If I can throw a bit of yellow somewhere. I'm so happy. And and I think you talked about it being, having to do with the chakras and your solar plexus.
Greg O'Brien 13:03
Susie Singer Carter 13:04
Yeah. And I just thought, "Wow, it's amazing, because I feel I feel like I'm heart centered. And I always have been impossibly. I always thought too much.
Greg O'Brien 13:15
Yeah. Well, I don't think you can be too much. I think more of us, particularly in these horrible times we live in, there's so much hate so much war in the world to find that place of the heart. Just getting back quickly to your comment before that. People often and Alzheimer's can speak to their heart and they're a lot more aware than people think because they have these just horrible stereotypes of First of all, the disease, the experts will say takes 20 to 25 years to run its course there are always exceptions. And if someone says well, my mother died after being diagnosed of Alzheimer's eight years later, the the answer you don't get Alzheimer's on the day you're diagnosed, I also have cancer and you don't get cancer the day you're diagnosed. And that that woman or that man probably fought for 15 years because they were scared out of their mind. And what you're trying to do and what I'm trying to do is to bring people out of the closet and on this and realize that their strength in numbers and it's okay to talk about it and it's difficult but... just on my mom, when my brother got his yellow Jeep because my mom always... he pulled in the driveway on Cape Cod. I didn't know this until after I wrote the book. My brother Tim, they were in the bedroom and my mom... Tim wanted to show her out the window of the yellow car and and she said, "Oh my God, that's so beautiful". I just found this out a year ago. She then told Tim, "Did you know that yellow is the color of angels?" She said to... excuse me, I'm just uh, emotion.... She said that to my brother. in the throes of Alzheimer's knew that however you wanted to find faith and we all define a different ways and I understand that, but in her faith, something was real... and she said yellow is the color of angels.
Susie Singer Carter 15:14
No, but see that's that's a perfect example of what I'm what I feel is so misunderstood... is that what's important and the things that are important to someone with with dementia or Alzheimer's like my mom... there's time... my mom hasn't spoken since pretty much on her own at all. Ever since COVID, you know, being isolated has just exasperated this disease and accelerated it very quickly. And but when I when I the last time I visited her in person, I say to her, you know how much I love you. I always tell her the whole story. I whisper, if I can make her laugh, it's a good day, and I can still make her laugh. I can still make her laugh and I go, you know, you're a pain in the ass. You just a pain in the ass and you're a troublemaker, I told you, you're a troublemaker. She laughs, I go, you know who I am? "My daughter." She knows.
Greg O'Brien 16:06
Well, just again. And I know you know this. When my, the end came from my mom... sad we had to put her in a nursing home after my father had Alzheimer's died. She was there at his bedside. Likewise with me. And I got a call from the nurse. I'm just looking at some notes I have here because I have to now. I got a call from the nurse of the nursing home said, "Your mom's not doing well. She scared. You need to come down." So I came down in my yellow jeep. It was about two miles away from where I live on Outer Cape Cod. And she was asleep. She was five foot two, 100 pounds. That's pretty much how her weight all her life. And, and I woke her up and I said Mom, I'm sorry to wake you up. The nurses said you were scared. This is real close to what she's about to die. And this, this pushes back. And I know you believe this. On stereotypes. She said plain as day, which is in my book, "Greg, I'm glad you're here." That was the first time in eight months, she could use my name. And I put I pulled the chair up and put my hand she's lying down on top of hers. And she waved around because she you know, didn't have a lot of strength and put it down on mine. And we talked and not big stuff. But we just talked. Finally she and I had put a photo, excuse me, which I have right here in my office of her father, my grandfather, who died of Alzheimer's, and I put it at the foot of her bed. So when she woke up every morning, she could see your father and I don't care what anyone says. I felt his presence in the room. And I said, Oh my god, something's about to happen. And she fell asleep. And I went over and I kissed her on the forehead. And she woke up immediately. And as plain as day said, "Greg, where are you going?" Excuse me. And I said, knowing that the end was there. I said," Mom, I'm not going anywhere. We're gonna ride this one out together." And she held my hand and I held hers. She closed her eyes, I kissed her on the forehead and she never woke up again. And she in my heart now; she helps me with my writing. The doctors told me that that's probably because I fight like that the last thing to go, I have what they call cognitive reserve. But the rest of my life if I could say this is a shit show with my memory and rage and getting lost and loss of place. So please don't mistake from my ability to because I'm dealing with notes that my life is a shit show and I can't wait right now to cross that line and go to heaven. But I feel God, The Universe, whatever you want to say is saying, "Not yet. You got more to do." And and I say that in humility. I tell people I've committed every sin a man could commit, but murder and adultery and I've been tested in both. So I'm not an altar boy even though I was when I was younger. Steve knows. I'm just saying.
Susie Singer Carter 19:22
okay, um, I should have not put mascara on you because I'm going to be crying through the whole thing.
Don Priess 19:28
But you've never lost that connection with her. You still use you say you still connect with her. All the time. She She guides you. She she she writes for you is almost what you said.
Greg O'Brien 19:42
I said before and, and this isn't faith and this is my mother when it took me three years or more to write on Pluto. And I'm also working on a screenplay, an adaptation of the book that's taking me a long time. Steve knows all about. But my mom is helping me with that. But there are times and I wrote it from 2000 pages of notes. After my diagnosis, I took notes to, I was worried about adding to all the stuff I'd forget, which I do now. And I have all the notes in my laptop. And I wrote it from there. But there were times when I was writing, in her spirit Spirit of God, the universe, whatever you want to say, where I'd look at my laptop and say, so many times, where did that come from? I was just in the zone. No, in sports, and there's a zone in writing, and there's only one knows and the other I was in that zone. And I take no credit for it. It's the Spirit of God, the universe, my mom. So I don't deserve I was just the, the guy in the horn section. But from the times when I look back at the book now, which I couldn't write today, I still say, in awe of my mother, God, the universe, where did that come from? And I just want to be clear to anyone who's listening, I deserve no credit for my journey. As a journalist, you just do your job.
Susie Singer Carter 21:11
You did your job. Yeah. But but but you also did it. And I'm going to push back on you a little bit. Because you because the your writing, and that's your words. So yes, you got you, you were helped. And you are given some kind of, you know, guidance along the way. But you, that's your heart speaking and that's you your words, and you're you're they're they're delightful, and they're meaningful, and they're deep, and they're and they're anecdotal, and they're, they're everything, you're you're extremely a captivating writer, and you know, and you can't I just want to give you credit for that. Because, yes, maybe you're the conduit, and I'm a writer, too. And I wrote a beautiful movie for my mom that resonates with people. Every day, I get letters like, and I know that. I don't say I say it's my mom's story. I just wrote it down. That's all.
Greg O'Brien 22:03
Susie Singer Carter 22:03
And so I get it. But you know, I do I just think, you know, there, you were, you're chosen for that, because you could do it. Because you are that person. Because you have that, that you have you have that affinity towards words, and you use them and you put them together just right.
Greg O'Brien 22:24
Well, you know, what am I you probably, Do you know, Lisa Genova? She's a very close friend, and we get together for coffee. And she's got a great sense of humor, and with all the other stuff and the cancer and stuff. She said to me the other day, what did you do to piss off God? That's a direct quote, and I said, "He's laughing." And I said, Did you ever read about Job in the Old Testament? The guy was tested and everything was restored, and that will be in heaven. And she said, "Okay, good answer."
Susie Singer Carter 22:57
I swear to God, someone told me I'm a star seed, which is basically like, you're put on earth to like, to for with a huge mission, but everything's going to be super hard. And my life is so super hard. Like, if it's gonna, if it could happen bad, it will happen to me. And yet, I'm like Sisyphus, I just keep pushing that rock up to the top. And just when I get it, there they go. "Pa!! Here's another one!!" You know, so I keep having to push that rock up the hill. But....
Don Priess 23:24
There's people like you who can you know, they're, you're, you're built to handle it. Whether it's, it's I mean, like you say, it's a shit show. It is a lesser people would would not have survived to up to now. So,
Susie Singer Carter 23:38
And Greg, I have a picture of my mother's mother, my Grandma Rose, who looks like Hedy Lamarr. She was the most delicate, wonderful, gorgeous woman. And I have a picture of her framed at the at across from my mom in the room as well. Because I know that she will be there for her.
Greg O'Brien 23:55
You know, in getting angry because anger is part of my deal. And then being in places where I don't recognize people I've known all my life. And so I the other day, I was really pissed off. And I had a WTF talk with God of the universe. And I won't use the words because they're probably not supposed to drop F bombs,
Don Priess 24:17
Drop whatever you want.
Unknown Speaker 24:19
So I said I was angry, and I believe God, the universe has got big shoulders. And I said, What the fuck? I said, I'm doing the best I can. In the Alzheimer's. You gave me cancer. I have no feeling. And for the most part from my knees to my feet, it's it's neuropathy, but but it's brain cells not connecting. I've lost 40% of my sight right now because the eyes are failing. My spine has broken down because the brain signals and I had spine reconstruction surgery at New England Baptist where they cut me from the neck to the to my ass really, if I could say that word,. And 54 staples, plate screws, steel rods, five hour operation turned out to a 10 hour, I lost seven pints of blood on the operating room started a heart attack. And I said What the fuck? You know who I am. And I said I'm trying to do the best I can. And I heard in that place in my heart I believe God, the universe will talk to you in language you use all the time. And and the answer came back with language that I use all the time. I heard immediately. "Yes, dumbass, I made you and I have you right where I want you and keep up that sense of humor and the fight." And i said, "Okay." I just wanted God the universe to know that. I wanted to know they were there.
Don Priess 25:45
You're on to them..
Susie Singer Carter 25:47
I love it.
Don Priess 25:47
I mean, that brings around something which you I mean, hope, faith and humor is your mantra. Right? And you use humor to help cope and make others comfortable about what you're going through? But was was humor something you used from the beginning? Or did it take a while to laugh?
Greg O'Brien 26:02
Well, my, my mother in law would always say I don't think he's particularly funny. But I've always thought that I have a great sense of humor. And humor has always been well, when I was reporting on the mafia, I wasn't writing humor, but but humor has always been part of of my life.
Steve Ecclesine 26:24
Don Priess 26:26
Steve Ecclesine 26:27
Don Priess 26:28
When you talked about using it, you know, to deal with Alzheimer's and to talk about help talk about to help open up other people to it. Was that something when, you know, obviously, when you learn you have Alzheimer's, that's not funny. How long did it take til humor became part of your arsenal?
Greg O'Brien 26:43
I...There are a couple.... That's a very good question. So there... Over time, there were a couple of times, I was taking notes, I wanted to write the book, and beyond my notes, and I kept hearing in my soul, my heart, not time, not time yet, not time. And then one day, I heard time, it's time with a sense of humor. And, and that that's that's that's when I when I started right. And so I've always done that. And my which I'm kind of proud of. But I was asked a while back to Boston has Alzheimers big run in Boston is one of the biggest in the country. And so they had a night for a preview of it. And they had it at a comedy club in the north end of Boston. And so they asked, I was asked to speak by the Alzheimer's Association. So I go in and the place is filled like close to 300 people. And the guy said, Okay, we want you to talk about Alzheimer's. Be brief, and talk. So I said, "Okay", I said, "Can I be funny?" And he said, "What?" I said, "It's a comedy club, isn't it? Can I be funny? And he said, "Okay." He was a little nervous. And he said, "I'm going to stand in the back. And if you're not funny, I'm going to give you the cut off. And if you are funny, I'm going to give you the hand wave." I said, "Okay." Well, when I was supposed to talk for 10 minutes, 45 minutes later, I was getting a standing ovation where people were high-fiving each other and laughing at the funny stories I would tell about... I don't want pity parties with people I want them to be able to laugh about getting lost. Because if we can walk in humor, then we could talk about it and tell stories. I got a better story than you and I you know, you'll listen to my story. And it's praying . Well, you know it you frees the soul.
Susie Singer Carter 28:45
Absolutely. It's it's, it's, I have to I have two very powerful tools in my arsenal to to open the doors with my mom. One is music, because she was a singer. And so I we use music and we I still do that is my that's my key. That's my strongest one and humor. And I always have and because my mom and I my mom has an amazing sense of humor. And I'd love you to watch my film. But then the very first scene is it starts off with my mom. With the year she lived with me banging on my door at four in the morning, waking me up and going, "Where where's my baby? You stole my baby!" And I said, "Mom, you don't have a baby. It's four in the morning, please go back to bed." And she was like, "You're a whore. And you are. And I'm going to find that. I know you sold that baby. You sold it. What a horrible thing to do. You're despicable. And she goes, :I'm going to find my baby!" And she goes running down. I was living in a loft and she was running down the stairs at night and I was chasing her, I go, "Mom! Stop! Mommy, stop mommy!" And when I said Mommy she it it connected. She turned around and she said, "Ah! You're my baby. Oh my god." And then she said, "You got to put me in a home. You kind of got to live your life." And I said, 'Oh, you're going? Where you're not ready yet. And I'm not ready." And she said, "Oh, well, when?"
Greg O'Brien 30:14
My mom would have things like that, she would, because I had a lot of brothers and sisters, but we at times would be in the house, and she would yell, she wouldn't know who we were. And she said, Get out of my house. Get out of my and I understood what was going on. But rest of the family was in the New York City area we grew up in right outside Manhattan. My mom was born on the Upper West Side of Manhattan, my dad in the Bronx. And they didn't understand because they weren't there. And it was just devastating to them. And you know, she would serve my father coffee grinds for dinner at night, because neither one of them wanted to go to a nursing home. So we had 24/7 care. And, but she, she, she and then she would talk to me about in her hallucinations, which I have now to the floor opening up, and people trying to pull her down. And there was a time that many instances like this, where I was one time I was asked to speak in Hollywood at The Night at Sardi's is the Alzheimer's Association and I was asked to be for Alzheimer's as a keynote speaker, which was one of the honors of my life. And we're getting ready at the Beverly Hills Hilton or whatever it's called. And my wife said, "Okay, we got to go put your shoes on." And I turned to her in full honesty I said, "I can't, someone's standing in my shoes." There was a person standing in my shoes moments before. And this is important story. So when I got to give my speech, I'm standing backstage. And I'm nervous. And I usually I get nervous if I have to do math, but not about speaking. But I was nervous and looked out at 1000 people in the audience, world beaters and incredible people and, and I got scared, I looked up in heaven. And I said, "Mom, this is for you." And I heard in my heart, which I know you would relate to, "Greg, you rock this." And this is in my book, "You just rock it". And I I speak from speeches that I write I don't ad lib anymore. And I went out and I rocked it. And and and I knew I rocked it because I felt my mom was with me. And it was kind of nice. Onstage behind me there was a woman standing there that made me feel so good. So friendly. So encouraged. So at peace. And I kept wanting to turn around to see who it was. And in my heart I kept hearing, stay focused, finish this, finish this. And so at the end, there's a standing ovation and I started crying and people in the audience started crying and I wanted to turn around to thank the woman behind me. She was gone. And I went down to our table. And I said to my wife, Mary Catherine, "Who is a woman standing behind me, who was was so encouraging, made me feel so much at peace. So at home so loved? Who was it?" My wife said," What?" I said. "Who was the woman behind me? Who made me feel so at peace, so calm, so loved?" "Greg, there was no woman." And I went around the table of 10. And I asked everyone and they said, "There was no woman. You were there alone." And I said, "No, I wasn't. There was a spirit of my mother, and maybe hundreds of others in Alzheimer's who were here for the cause. And my mom was with me on stage."
Don Priess 34:01
She's always with you. I think she's I mean, she's not I mean, did you at the time did you feel like you saw her or just felt the pressure
Greg O'Brien 34:09
I saw a woman but I'm walking on the stage and there's a woman there and I need to focus I don't want to trip on the way to the port. There was a presence there. I saw it. I didn't focus on it. It was an older woman and blond hair like my mom - you know when you get older she dyed her hair blonde hair - and and I just went up. I was nervous and went up to thing it said, "Okay, there's someone stand... and then I said,"Geez, that's good. I'm glad I'm not here alone." And then and then all of a sudden that feeling in my heart. I'm kind of feeling loved here and this is encouraging and someone in the audience told me I saw you at times trying to turn around and then you didn't you didn't and I figured you wondering what was going on. And but you didn't you stayed focused and when I get off the stage when I knew someone was there, everyone said, "You were there alone." I said, "No, I wasn't. My mom. My mom was there in spirit. Um, I, I don't know what else to tell people. But if you reach out, and again, I'm not here to proselytize. If you reach out, there's a lot out there. This is just a veneer that we live in. And there's a whole realm out there.
Susie Singer Carter 35:21
Interesting. I find that so comforting. I have a question, a selfish question. And because I used to try to get inside the mind of my mom, because I felt like we're so Kismet that I could understand everything, like we could just look at each other and go, you know, and my mom yeah, she's she was hilarious, because she would she loved as she lost her filter, as you talk about in your book, losing your filter. And I'm wondering, are you are you aware of it, and if I can just share a little anecdote when my mother was at my stepfather's funeral, smack dab in the middle of her Alzheimer's and her step, stepdaughter, my stepsister, who my mom wasn't very fond of, because she was just not a very nice person. And, and she really wasn't very involved with the family. She went up to do a eulogy for my stepfather. And she's, she's begins and she's pontificating, and she's, you know, accolades and this and that. And all of a sudden, you hear my mom go, "OH BULLSHIT!"
Don Priess 36:24
Craacked up the whole place.
Greg O'Brien 36:26
I, I have, I've become who's a personal hero of mine, but he doesn't know I exist. Larry David-like, yeah, Larry David, and I love the man, he sent me a picture because Steve knew someone who but, but he's another hero of mine. Because when I watched the shows, and the reruns all the time, and I love his, his his lack of filter, because he says what he wants to say. And I deal with that all the time. But there was a time when, for the cure. I'm on the board of us against Alzheimer's in DC, and very active in that and I support. And I told you before, I was on the Alzheimer's Association, early onset advisory board in Chicago, and the Cure Alzheimer's Fund in Boston, and I was at a Cure Alzheimer's Fund event, which I was involved in, at Harvard Club, and heard him speak. And so afterwards, after the speech, you know, they had a reception upstairs. And I don't know, this is with your mom, in Alzheimer's, you can't filter noise. And the brain doesn't know where it's coming from. And it's very loud. And it's like the scene in "Psycho", where someone who was about to be stabbed. And there was a guy who was talking, I'm sure, very quietly in front of me to someone else. And I'm with a few friends of mine, because they always watch over me because they know I'm going to lose my shit. And, and, and so the noise got louder and louder. And I couldn't bear it. And I went up to him. I said, "Excuse me", and I went up to him and I said,," Would you shut the fuck up?" Now, all of a sudden, pause, my friends huddled around me and said, "You know, Greg has Alzheimer's dementia", and Lisa Genova was up there. She was aware of it. She said, "Come on, Greg, we're going to go downstairs and sit on the couch and talk. We need to take you out of here." Stuff like that happens all the time.
Susie Singer Carter 38:33
Do you feel it though? Do you, what, you know what's gonna happen? Is it sort of like when you're in throes of an argument, say like, you know, I've been in those places where you're just, you know, all bets are off. You say anything that comes out because you just don't care at that moment? Because because the the emotion is overwhelming? So is it, so you're aware of it? So like, I just wonder where my mom would look at me and say, you know, "Well I know a good corner that you could go stand on, why don't you go back?" You know, I think where's that coming from? And then later, I would say to her, "M om, do you know you said that to me?" She'd go, "Huuuuuuuh? I would never say that to you!" I go, "Well, you did!"
Greg O'Brien 39:08
i And it's Alzheimer's, as they say like snowflakes. They're no two patterns alike. Yeah, in cases like that. I'm not aware that I said it until after I set it. I'm not aware when I go into rage. There are times when I'll sit in my studio. This I'm in my writing studio. It's next to the house on Cape Cod, where I'll be screaming because something stopped something's not right. I'll be yelling and screaming and dropping up and what's what's wrong? And I'll say, not realizing the moment that I was doing it I'm not so I find that it just with the rage, it just happens and I'm not aware of it until after the moment and that's why in public situations, usually I have a lot of friends or family with me just to babysit.
Susie Singer Carter 39:59
You've got some wranglers.
Greg O'Brien 40:00
Don Priess 40:01
So Steve, Steve, what? So the fact that you were basically working with Larry David - what were some of the challenges that you faced while making your film? I mean, did this come into play as you were shooting? And, uh, and did you choose sometimes, you know, that say, Oh, we shot that, but maybe we shouldn't use it? Or what were some of those challenges?
Steve Ecclesine 40:22
I think that, you know, documentaries have come into vogue. Since everyone's been landlocked. In COVID land. The world of documentaries have been discovered by a whole lot of people who never paid attention to documentaries. I had spent my entire career working on scripted television shows for the most part, where you have the luxury of having a script, a budget, and a schedule. So these are all plans that get put together in order to make the process of making that movie or TV show come to life. And in this particular case, Greg, let me know that he was coming out to Scottsdale Arizona in March of 2019. And I said, "Well, that's close enough. I'll bring out some cameras, and we'll shoot some footage." And I'm amazed here in retrospect of how much that how much of that footage that we shot on that first day is still in the film. And the film that people will see in the theaters is, at this point in time, it's version 23. Because there's no script, you have an idea, I want to make a movie, and you start shooting. When it was all said and done, we basically shot probably about 70 hours of footage, we got it down to eight hours of footage. And and and I was lost. And then I had a wonderful conversation with a guy named Dr. William Lin, who is over at the Joseph Campbell Institute. And he basically gave me the idea of of the formula that they use, which is to break a story into a four act play. There is the autumn when everything is fine, you introduce everybody. There is the winter, when everything falls apart and goes to hell. There is the spring, where hope springs eternal. And then there is the the summertime, where the hero rides off with the girl and the villain has been vanquished. And in our particular case, I knew that we didn't have "the villain will be vanquished" yet. And I knew that that was something that we're going to have to contend with there and act four. But in the meanwhile, all the other pieces started to materialize and just going through everybody's information and just combing down, combing down... culling. And getting it down to 90 minutes was amazing. And then we showed it at a film festival in December, just to take a quick look and see what it looked like on the big screen. And we realized that there were redundancies and things that we were so close to the material we had been combing through combing through that we did not realize that there were things that were repetitive and redundant and what have you. So we we chopped out another six minutes, and it's now 84 minutes and it just flies. So there were 1000 things that you know we had to contend with in terms of how do you you're basically building a linear jigsaw puzzle, Three seconds of this. Two seconds of that. Oh! We need a graphic, etc. A whole film is usually 2000, 3000 edits of of little two second three second clips that will get glued together in a particular order. And I was just fortunate that we were able to have all this wonderful information. I've got another film sitting on the cutting room floor of material I couldn't fit into this 84 minutes of good stuff material that you know these brilliant people that Greg had turned me on to, they just sat down and opened up and told me everything and that was great. And so I tried to get it glued down and put it into an order polish it up. And I do know that it does reach in and affect your emotional fusebox and I do know it's going to make you laugh and I do know it's going to make you cry. And it's going to make you feel, And and Greg's story is so wonderfully powerful and at the same time individual that here's this, here's this voice that hasn't been silenced yet. There's this voice that enables us to look at this terrible disease from inside. For every person diagnosed, there are going to be 10 people whose lives are affected. The family, the friends, the caregivers,
Greg O'Brien 45:06
Can I ask a question of the most beautiful person on the zoom here. Can I ask you a question?
Don Priess 45:11
Oh, that would be me. So yes,
Greg O'Brien 45:13
No, no, no.I told you I lost 40% of my sight. I'm asking the most beautiful person... are, are you afraid that you're going to get Alzheimer someday?
Susie Singer Carter 45:28
Yes, all the time. And that was a question I was gonna ask Steve, this because I, I panic every time I lose a word. If I can't think of a word because I love words. My heart beats like literally, like beats, and I, I'm so afraid that I'm going to get it all the time,
Don Priess 45:49
Because I have to constantly remind her that sometimes... first of all, everyone forgets even you know, 15 year olds forget, that... and without saying, hey, we shouldn't be, you know, aware and be vigilant about, you know, the possibilities. Bum, and oftentimes, it's just stress. You know, sometimes you've got or sometimes when I forget things, and I do forget things all the time. It's usually while I'm thinking about something else, you know, it's, but absolutely, I mean that you, to just say, "Ehhhh. I don't I don't fear that at all." I mean, I don't think that's being realistic. It's an it's a reality that that affects so many people.
Steve Ecclesine 46:29
And I remember... Don, I would recommend, here's a plug for Lisa Genova has written a book called "Remember", it was on the New York Times bestseller list within two weeks. And she really does a wonderful job of taking very complex subjects and boiling down to being comprehensible by anyone lay people. And she says so, so many times we forget things. And it's out of, it's because it's out of context. I'm lying in bed, I'm watching, I'm reading a book, and I want to go into the kitchen and get something to drink. I get to the kitchen, and I forgot why I'm here. Now - I go back to the bedroom. And I say, "Ah, I went in together a glass of water." So when you removed yourself from the place of out of context, you lost what the idea was that had promote prompted you to go do something. As soon as you come back, you say, Ah, okay, I remember it was that I wanted to go get a glass of water. And that's a big difference between remembering and being... having Alzheimer's
Greg O'Brien 47:37
What Lisa does in her book, which is right here. So another shameless plug for me. Lisa writes the difference between forgetting where your car keys are and not knowing of car keys. On Cape Cod, we take our trash to the dump.I know you guys probably think that that's barbaric, but but I like going to the town dump because you know, people campaign there I think there should be a sports pub, you know, pub there and you know, you just meet people so when I was still driving, I drove my yellow Jeep to the dump and I took all my stuff out to throw away and I was standing there right in front of my yellow jeep. And I said to myself, "Okay, how do I get home?"
Susie Singer Carter 48:20
Greg O'Brien 48:20
And my mind my brain in that moment would not tell me it was a four door yellow Jeep that that jeep was my car. And finally, I thought I'll call my wife or call friends or whatever and finally someone could tell I was you know, and they knew my situation and they said, "Greg. Get in the car. It's okay.
Susie Singer Carter 48:44
Greg when you when that happens? So you can reflect back on it and remember that you those feelings
Greg O'Brien 48:52
only because I wrote about it that's why I'm looking at...
Susie Singer Carter 48:55
But afterwards you did thoug, You were able to write about it so I find that fascinating that you went through it and then you were like you had you had the...
Greg O'Brien 49:05
But I have to write the moments down immediately.
Susie Singer Carter 49:08
Greg O'Brien 49:09
That that's what triggers to my brain. Not remembering it but saying I... You will never see me without my laptop every day writing everything down that happens and and you'll never you'll never see that.
Susie Singer Carter 49:22
I just wanted to say this before I forget is that I love the way that you your friend. nicknamed Alzheimer's "Al", and then you adopted it and then you you extended it to "Little Fucker".
Greg O'Brien 49:36
Susie Singer Carter 49:36
I think so if you don't love this guy now already, you'll that that's just that clinches it for me.
Greg O'Brien 49:44
By the way. Before we end. I know you're going long here. I have a story about my sister Maureen that takes us full circle into what we're talking about today.
Don Priess 49:53
We will go as long as you want. We are We're in no hurry. So as long as you'd like to go with that. That's fine with us.
Greg O'Brien 50:00
But this gets back to the spiritual other realm of things. And in I think all of us are on the same place. We come from different backgrounds, but my mom would always say, which I wrote about, I can't get sick, I can't get sick, cuz she wanted to take care of my dad who was in the throes of dementia. And he had he had cancer. You know, inheritance isn't all that it's cracked up to be, that's all I could tell you, but he, he had all these other stuff. And, and I've said that in my life, because I got, I got kids and grandkids, I can't get sick, I can't get sick, I can't get sick. And one of the closest people in my life was my sister, Maureen. And she was a nurse outside Manhattan and in Manhattan. And she coached me through, you know, she was also I think, hearing from my mom, and she coached me through Alzheimers, and how to deal with things on the medical side. And so what, what happened is, she ended up with blood cancer, and was in recently, for a couple years and was at Presbyterian Hospital in Manhattan, she had to get chemo type and things like that. And what it breaks your system down. And what happened was, she got a virus in her body that in 48 hours, gave her a heart attack and she died. She she she died, she died at the end of the summer. She, I mean, that's but the point is, I was born on her birthday. Two years later, March 22. Next Tuesday, I turned 72. And it's the first time in 72 years that I haven't shared with my sister. Now, this gets back to what's happening upstairs in heaven. We had in the driveway, this plant that my wife was in my face, so she should be the ticket to the dump. And for some reason, I kept forgetting. I came out one day, and this plant that was dead, was sprouted with a yellow carnation, which I took pictures of that I could send you. And it was dead. And it had a yellow carnation. And I talked to my sister's two kids. And and, and her daughter said, "She's just letting you know she's here watching you." And I said, "No, she's not. She's letting me know she's still in charge." So I expect on Tuesday, I'm going to hear from her and my mom and my dad who're all up in heaven saying, "Okay, how can we fuck with Greg?"
Susie Singer Carter 51:18
Exactly! I Love it!
Greg O'Brien 52:02
That would be the best gift.
Oh, that's that's my birthday present. I think
Susie Singer Carter 52:55
You're an Aries. Like my mom. My mom is April 1. I don't know if she's gonna make her birthday this year. But she
Greg O'Brien 53:01
Please let me know. Can you send me the link to your film? Please?
Susie Singer Carter 53:05
I would be honored to.
Greg O'Brien 53:07
...I want to watch it, so...
Steve Ecclesine 53:09
Susie Singer Carter 53:10
Yes, please watch it. And, you know, it was interesting. Just just just an anecdote on that is that Valerie Harper, who plays my mom so beautifully, and it was her last performance. She had cancer. And it was and beating it to death. Like she just said, eight years before I'm not going to go to my funeral until I'm ready.
Don Priess 53:29
.And she was given six months to live at that point.
Susie Singer Carter 53:31
And she was meant to do this film. She had met with my mom. They held hands and sang for two hours together and she went and saw my mom on her birthday on our own. When we got on the set, Valerie was taking medication that I didn't know mimicked a lot of Alzheimer's you know the way that in her memory and affected her memory. But when we were rehearsing, she always was on book, so I didn't notice it. Yeah. And I and it was like, I was the best director for her because I knew how to I knew how to work with her. And we got the most beautiful, you know, performances. She's she's a she's an... she's an angel.
Greg O'Brien 54:14
Well, you can you can look and things like that if you're connected with one another, how you can read between the lines between body and spirit. Just to final a point on Maureen which I forgot to mention which I wrote down here... Three days before she died... And I had no idea because she was on Cape Cod. We spent a week together a couple of weeks before she died. She um uh, like I said, we have between my wife and I we have 45 nieces and nephews, I'm 1 of 10; Mary Catherine's 1 of 8. And in the family, they call me the patriarch and as I said, I got plenty of money. It's just tied up in debt, but I like to advise...give people advice. So she emails me three days before she dies. And she said, "You are the patriarch. Keep at it. You can't give up. Three days later - and I think she had a sense of what was happening - three days later, she died. And it was, those were the, that was the last words that she said, You cannot give up. You are the patriarch, you have to hang in.
Susie Singer Carter 55:19
I love it. Please, please don't give up. You're
Don Priess 55:23
just gonna make sure you are doing that.
Susie Singer Carter 55:26
I don't know, you grid, but I love you.
Greg O'Brien 55:28
Love you , too.
Susie Singer Carter 55:28
I think you are a gift, you are a gift to us. You've been a gift to me your gift to everybody that's going through this or doesn't or knows somebody's going through this or, you know, like you said, it's, it's, it's going to be a pandemic of a gargantuan size at some point, you know, if we don't if we don't put nip this in the bud, you know, and
Greg O'Brien 55:51
it's like putting COVID on steroids.
Susie Singer Carter 55:54
Totally, totally. You know, and I, I mean, I would love to continue talking to you. I just, I mean, I love everything you wrote. I mean, I guess if we have to sum it, if we want to tie it up, I just want to ask, because I know what what you wrote. But please explain your title "On Pluto", because I think it's so magnificent.
Greg O'Brien 56:15
Yeah, I had all my notes, 2000 pages of notes. And I said, Okay, I'm going to start to write, and I heard inside my mom, the spirit, the universe, God, not yet, not time, not time. And then I heard time. So I started writing. And as I said before, there are things that were coming out of me, I had no clue where they were coming from. And then I said, Okay, what do I call this book when I got two thirds into it? In my heart, I heard you call it on Pluto. I know this sounds bizarre. And and at the time, what was happening with Pluto is Pluto was a planet that was being demoted because no one was paying attention to it. And I and I said, "Okay, I'll call it Pluto. And then I felt okay, I got it. I don't want people to think it's a scientific book. And then I came up with inside the mind of Alzheimers, but I got Pluto from my heart. And immediately when I was saying, "Okay, what do I write?" It was like, seconds later, I just heard one word, Pluto. And then I looked it up. And I wish I could claim credit for it. But I can't.
Susie Singer Carter 57:25
But the metaphor is magnificent. It's it hits the spot for me, especially what afterwards that I was told by one of the chaplains at the home that my mom is at, who told me, you know, your mom's demented? And she's not there. So you know, her brain is full of holes right now. So you can't really don't worry about her being scared. And don't worry about her being this. And I thought
Don Priess 57:49
She said, "there's nothing there".
Susie Singer Carter 57:50
Don Priess 57:51
I mean, she literally said those words, there's holes, it's just full of holes. ,
Susie Singer Carter 57:56
Full of holes. And I said I, she said her soul is there, but she's not there. I said, "Well, I'm going to push back on you on that one lady."
Greg O'Brien 58:02
Good for you.
Susie Singer Carter 58:03
Yeah. And I said, "She's there. You just don't know how to find her. I do." And, you know, you you write about that the the parallels of, of when they were researching Pluto, and all the crevices and the and the caverns and everything. But as they got closer, they realized there was a lot of a lot of a lot of space in between those. Right, right. Yeah. And I say that's where the magic is. And that's where that's that's how we as people that love and are more open minded and understand this as well as we can know that we're just have to traverse those crevices and those holes and get to that solid land. We'll find them there. They're there.
Greg O'Brien 58:44
One of the greatest blessings about Pluto was, after all of this and people saying it's not a real planet, and it's way out there in the middle of nowhere. And New Horizons came and found that Pluto had a heart. That was confirmation for me way after I wrote the book. Pluto has a heart and that's what we're talking about in this journey. The heart.
Susie Singer Carter 59:10
The heart, so much so I Okay, I guess we have to tie this up. I'm, I'm just I'm so emotional. I love I again, I love you so much. Steve, I love you for making this movie. And bringing me into your world with this and allowing me to share it with my audience. And wow, just read, read, read that book. Everybody read this book and read Greg's blogs and you'll get a sense of you know, a deeper sense of what he's his journey. It's beautiful. It's it's hard it's it's everything. It's life. It's just freakin life. That's all what it is is life. And that's you know, we all if you're going to live life, it's going to get hard and you just have to ride those out. I'm an expert.
Steve Ecclesine 59:54
May the 6th is when the movie is going And, and go see the movie because you won't walk out of there depressed, you will walk out of there informed, and, and enlightened, and hopefully have that sense of hope that Greg so magnificently represents in a world where it Alzheimer's is a big whitewash old person's disease. Well, we got a person here, who it has has this particular disease, but he still knows how to reach inside and talk to you. And all of his writing is, is just basically talking directly to the heart, the other hearts of the people who are were drinking from Greg's fountain.
Susie Singer Carter 1:00:48
100%. Where can people see the film on May 6,
Steve Ecclesine 1:00:51
it's there's going to be a limited theatrical window where it'll start off in 30 films 30 theaters in about 10 cities. The second week, it'll go to 60 theaters, the third week of go to 120 theaters. And we have a website called HYHAG (Have you heard about Greg?.com. And on that, you will be able to find where the theaters are and where they can go and drink and drink this in.
Greg O'Brien 1:01:20
Here's a picture of Maureen by the way.
Don Priess 1:01:22
Oh, wow. She's beautiful.
Susie Singer Carter 1:01:24
Awwww, well, there isn't an ugly person in your family. I just gotta say. Like, my mom says...
Greg O'Brien 1:01:29
I take no credit for that.
Susie Singer Carter 1:01:30
...we don't you ugly, but you don't do ugly. I'm telling you, all of you including you, Greg. So, yeah, you're all beautiful. Your granddaughters beautiful.
Don Priess 1:01:41
Oh, Steve, you're a looker too?
Susie Singer Carter 1:01:43
Yeah. Yeah, I love Yeah. For sure. So, um, oh, gosh, I have to see I get nervous because I can't remember what I was gonna say. I was gonna say something. But I can't remember.
Greg O'Brien 1:01:55
I have pills for that if you want.
Susie Singer Carter 1:01:58
Greg O'Brien 1:01:59
I have pills for that if you want.
Susie Singer Carter 1:02:05
I'll call you Greg. Okay, well, listen, Greg, you hang in there and stay with us for a little bit longer as long as you can. Because I'd like to meet you in person and give you a hug one day. And I hope that I get to do that. We I can't believe we haven't crossed paths. Us Against Alzheimer's was my fiscal sponsor for our film. I've been I've been a I've been a spokesperson and a face for Alzheimer's, Los Angeles for the past four years. And I just I am very much a supporter of our community. And I hope that I help in some way some little way by bringing humor and hope like you. So and also because we come from the heart, which is why we call our show - Don... tell us.
Don Priess 1:02:50
As we said, your your mantra is hope, faith and humor, and our, to add to that which is all part of yours, too, is love. And that's because love is powerful. Love is contagious, and LOVE CONQUERS ALZ. And we are honored to have you both here today. And, and we'll see everyone next time. Thanks for joining us today.
Susie Singer Carter 1:03:11
If you'd like to share this and share all the information today, and we'll also have all of the information in our show notes and we love you! Bye!
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