

Have You Heard About Greg? A Journey Through Alzheimer's
8/7/2023 | 56m 6sVideo has Closed Captions
A profile of journalist Greg O’Brien and his life with Alzheimer’s Disease.
Greg O'Brien, an award-winning investigative reporter, was diagnosed with early onset Alzheimer's at the age of 59, and has seen first-hand the emotional, economic, and physical toll; the disease has taken several family members. Greg is committed to starting conversations about this killer, with millions worldwide, relying on his lifelong craft of writing.
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Have You Heard About Greg? A Journey Through Alzheimer's is a local public television program presented by PBS SoCal

Have You Heard About Greg? A Journey Through Alzheimer's
8/7/2023 | 56m 6sVideo has Closed Captions
Greg O'Brien, an award-winning investigative reporter, was diagnosed with early onset Alzheimer's at the age of 59, and has seen first-hand the emotional, economic, and physical toll; the disease has taken several family members. Greg is committed to starting conversations about this killer, with millions worldwide, relying on his lifelong craft of writing.
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How to Watch Have You Heard About Greg? A Journey Through Alzheimer's
Have You Heard About Greg? A Journey Through Alzheimer's is available to stream on pbs.org and the free PBS App, available on iPhone, Apple TV, Android TV, Android smartphones, Amazon Fire TV, Amazon Fire Tablet, Roku, Samsung Smart TV, and Vizio.
♪♪♪ ♪♪♪ ♪♪♪ Greg O'Brien: Hi, I'm Greg O'Brien.
Damn pleased to meet you.
I deal with a memory issue.
It's called Alzheimer's, and it took out family members: my mother, my grandfather, my uncle, my father, and now Alzheimer's is come for me.
I've heard people from different places across the country and some foreign countries, they can see their own lives or the lives of loved ones through this journey.
I see this as a window for the baby-boom generation and see things in their own lives in this disease that we need to bring out of the closet and talk more openly about.
Imagine, if you will, a terrorist organization announcing tomorrow that they had a bioweapon that was going to infect 80 million people by 2030.
Can you imagine the globe's response to that proposition?
This is a quiet thief in the night that relentlessly robs from the patient the sense of identity, personality, and ultimately the very essence of self.
Alzheimer's, it's like having a sliver of your brain shaved every day.
Sixty percent of my short-term memory can be gone in 30 seconds, and every day is a fight for me, and I put a stake in the ground as a journalist and said, "We're gonna start to talk about it."
Rudy Tanzi: If we don't do anything, by 2050, minimally 14 million patients in this country, it will single-handedly wipe out our healthcare system.
Greg: There were millions of people who were undiagnosed who are walking around on the path to Alzheimer's.
Lisa Genova: Anyone who's ever chatted with Greg knows that that's a real conversation, and it's heart-to-heart, and it's soul-baring, and it's funny, and it's irreverent, and it's loving and just brutally honest.
This is probably the magic of Greg, right?
Some people don't wanna talk about Alzheimer's, and it's depressing, it's scary, it's all of those things that we'd just rather not look at.
It's the old person's disease, like, "A-la-la-la, I've got other things to do."
But Greg is so charming and delightful to be around, and he's so honest about what's going on, and you just get taken in by him, and he gives us an opportunity to look at this monster and see that it's--you know, he doesn't sugarcoat it.
He's not saying, "Oh, it's not scary, don't worry about it."
No, it's scary and, like, "Let's look at it together.
And I'm gonna make it a little easier for you to look at this really scary thing," and, you know, he is out there, you know, you've heard him, see him give a talk, and it's amazing that he does this because it takes a lot out of him to do that.
He's charming people everywhere he goes in the best kind of way.
He's making it possible for people to look at this disease long enough to do something about it, 'cause otherwise, people just look away.
Greg: I was diagnosed when I was 59.
Two serious head traumas, doctors said, unmasked the disease in the making that was going to be happening later in my life.
In the old days, we never talked about cancer.
It was the Big C. We never talked about AIDS, and now we do.
And when you strip away the stereotype of any disease, people move from hiding to caring, and the stereotype of Alzheimer's is wrong.
It's not just an 80-year-old lying in a bed and incontinent.
I'm incontinent myself now, that's why I wear black pants.
It's okay if you laugh, folks, 'cause I'm gonna try to get you to laugh 'cause, without humor, the enemy intimidates, and if you have humor, it's punching back at the enemy.
Rudy: Every time you see Greg, I don't know how he does it.
Smile on his face, cracking a joke, makes you feel like a million dollars, you know?
This is a guy who makes everyone around him feel great, despite the fact he doesn't feel so great.
And that cannot be easy.
That's a level of emotional, and I would say, even spiritual, resilience that is really inspirational and a model for us all.
Greg: I believe that God, first of all, has a sense of humor and God will talk to you in language that you just understand.
That, okay, now I lost my train of thought.
Have we met before?
Greg O'Brien, damn pleased to meet you.
Doug Scalise: Good to meet you, Greg.
David Shenk: We're being filmed right now by an old dear friend of yours, Steve Ecclesine.
This is a project from his heart and he's doing what all of us are doing, which is he's trying to figure out a way to tell the story of Alzheimer's in a way that enlarges this conversation, and-- Greg: He knows firsthand on it 'cause Steve and I grew up in Rye, New York, outside Manhattan.
Steve's mom and my mom were friends, and they both died from Alzheimer's.
And this disease has brought us back together after 50 years we hadn't seen each other.
George Vradenberg: One of the many things that's remarkable about Greg is that he is deep into this disease, and yet has the ability to marshal his energy and his focus and to speak about his disease in a way that's touching, empathic, and inspiring.
I know many people now who are in the throes of this disease.
He has a unique capacity that takes him both inside the disease but able to talk about it.
There is something about training your brain all your life to do a singular thing, not singular in the sense of narrow or singular in the sense of inconsequential, but singular talent.
I saw this with Glenn Campbell.
Glenn Campbell was a musician which, if you've seen the movie, "I'll Be Me," is the story of what was to be his final tour because he had been diagnosed with Alzheimer's because he was basically less and less able to communicate.
And he had scheduled a tour of, I don't know, three to five concerts.
A hundred and fifty concerts later, he would go onstage, he would be able to play the music he'd played all his life, and he'd come offstage, he wouldn't know where he was.
And I think Greg, because of his writing skills, has a capacity in his brain that he draws on, even though the rest of his brain is deteriorating about it.
You can call that cognitive reserve, you can call it just building up the synapses of your brain because you've done something all your life but, in fact, what is happening here is he's drawing on something that's been there and been developed during his entire life and he's now drawing on it.
Greg: I wanna talk to you today about living in faith and humor while researchers and medical professions race for a cure.
And I wanna talk to you today about hope when, at times, there is no semblance of it.
My brother-in-law, Lou, and I'm gonna have some fun with him 'cause he was just here for the free coffee, but Lou and I roomed together at the University of Arizona with his other brother, Tommy, and they used to give me all sorts of -- coming from the East Coast and so I thought I could really screw them up by marrying their sister, so she's pretty so it was very--it was--it worked out good for me.
George: Many people are inside this disease.
Few can talk about it generally.
Few indeed, uniquely, probably a handful, can talk about it in a way that is inspiring, because of the quality of his writing and quality of his thinking.
Even as you know that he's expelling just about every last piece of his energy, and he essentially, I don't know if I can say collapses, but he basically, at the end of one of those hour-long sessions in which he speaks to people, he is exhausted.
It is remarkable to see, but it is saying something about how we do or do not really understand how our brain works and as brilliant as all these scientists are, and as insightful as all these physicians are, they don't know bupkis yet about the brain.
Greg: When I was a cub reporter at "The Arizona Republic" out in Phoenix, my first court assignment was covering the courthouse, and I was assigned to cover a case.
The judge was a woman judge.
She was on the bench and, all of a sudden, she hits the gavel and says, "We're done.
You guys aren't prepared."
And she storms off, and I had to cover the story, and I didn't wanna screw it up, so, [knocking on table], knocked on the door, and I heard the yell, "Who is it?"
And sheepishly, I said, you know, "I'm Greg O'Brien.
I'm a cub reporter."
So she came and opened the door, and I said, "I was in your courtroom, and I covered that case.
I'm not sure what happened.
I know you were upset, you didn't think the lawyers were prepared.
But I don't know what to write and I don't wanna screw it up, can you tell me what happened?"
Her whole demeanor changed, and she said, "Well, sit down," and she told me everything, and this is how it goes, and this is what it meant.
I got a great first story out of it.
And then she said, "Are you gonna continue to cover Superior Court?"
And I said, "Sure," so she said, "Why don't you keep coming back, and we'll talk about court reporting, and I'll tell you everything I know, and I'll help you out."
So we became good friends, and I kept coming back, and then one day Ronald Reagan called her and she became the first woman Supreme Court Justice of the United States, Sandra Day O'Connor.
She taught me court reporting.
So Sandra always told me, "Greg, keep asking questions.
Keep asking questions until you get the answers."
And I've never forgot that, and little did I know that Sandra and I were on parallel tracks.
She lost her husband to Alzheimer's and recently announced to the public that she's dealing with the symptoms of dementia and Alzheimer's.
Tim Armour: It's a tough struggle because it's only recently that people in general began to realize this as a disease.
It wasn't very long ago that most people thought, "Well, it's unfortunate but you get old, you get crazy.
It's just the way it is."
It's not the way it is, but that's the way it was thought.
Mary Catherine O'Brien: He must use the word, "I'm so confused," 25 times a day, even though I'm not even with him all day.
Whatever I might say, he just shakes his head and say, "I'm so confused.
I'm so confused."
Greg: In the summertime, I went out on a bike ride with my son, Conor, to see my mom.
Little did I know she's in that stage of early Alzheimer's.
Conor knew that something was wrong with his grandmother and it was 85 degrees in the summer and she said, "It's so cold.
The kids need these big sweatshirts."
And graciously, he put it on and I said, "Mom, it's okay," kissed her, and I left.
And soon as we turned the corner, I said, "Okay, you guys can give me the sweatshirts."
So I had the sweatshirts draped over the handlebars and I'm just about 60 years old and I'm riding no-handed, speeding.
And it's working and I feel like I'm a kid.
And then something inside me, I believe it was God, said, "Something bad is about to happen."
In slow motion, seconds later, I saw one of the sweatshirts slowly slip off the handlebars, grab the spokes, brought the bike to immediate stop, flipped the back tire up and threw me 10 feet or so into the tarmac.
And because of that sense that something was gonna happen, I was able to get my left hand up to break the fall and, when I hit the concrete, the cut went right through to my knuckles and then my hand came up and my face hit the pavement twice.
I got up and I felt like someone had sprayed me with a water hose, and I looked up and it was all blood.
I was totally numb.
But that was what the doctors called the unleashing and, basically, the doctor said, "Little did you know that day that you unleashed a demon."
Colleen O'Brien Everett: I think it was the summer after I graduated college.
We had kind of been noticing some things that just were off and that was kind of when my parents sat us down and talked to us about it.
I guess at the time, we didn't really know much about the disease so, like, we weren't really sure what to expect or what it really meant.
And so I guess that was back in 2008, I wanna say, is when my parents kind of sat us down as a family and talked to us.
Brendan kind of really took the lead as kind of the head of the household, and Conor has kind of been sort of a caretaker position.
I'm always the emotional one of the family.
Brendan O'Brien: The family dynamic's always been tough because the way that we deal with our emotions is internally.
It's not as much on the sleeve as a family.
And so, we'd rather just enjoy each other's company and, you know, my little brother has been sucked into this whole thing.
I think that's a dynamic that has been very drastically, sort of, changed through my dad's diagnosis for him having to take care of him.
Yeah, it's tough.
Conor O'Brien: In D.C., this was a few years ago, just checked into a hotel, and he had a big speech.
We'd just got off the flight.
He was exhausted.
I went down to the gym, he came back up, and he took a quick nap.
I walk in, and he didn't know who I was, and he started to panic, and I had to sit him down and say, "Dad, I'm your son.
You have a speech in about an hour.
Get in the shower and let's go."
And then he just snapped right back into it.
Lisa: People with Alzheimer's tend to be shamed and stigmatized and alienated and excluded from belonging because, "I don't know if you're gonna recognize me.
I don't know if you're gonna say something weird or you're gonna forget.
Like, I'm just not gonna invite you anymore, not gonna call.
It might be really uncomfortable for me.
Your Alzheimer's is gonna be uncomfortable for me, so I'm gonna ignore what's going on with you, 'cause that's my simplest solution."
No one wants to see this happen to someone you love.
So you stick your head in the sand and you think, "This is just a normal part of normal aging," which is some of, you know, the myth that our culture has bought into because nobody wants to look at this disease.
Greg: My mother and I became closer in Alzheimer's.
She saw a lot of my father in me and was taking it out on me rather than my father 'cause she was scared to take it out on my father 'cause she realized she needed my father, but she couldn't talk to my father about what she was going through.
I used to sit and watch her in the kitchen in Rye, New York, staring out the window, out to Pluto, moving her mouth like she was talking to someone when there was nobody there.
And I didn't understand it at the time.
I didn't understand it until I started dealing with this.
And we didn't get along for a while.
It was very hostile, and then she said, "Can you come with me to the bank?"
She was a banker and she said, "Can you help me with my ATM card?"
And she's standing in front of the ATM and she starts crying.
And she says, "I can't do this anymore."
I said, "What, Mom?"
She starts sobbing, so first person she told about what was going on in her life and about this thing inside her, what it was doing to her.
I just melted at that moment and I realized that all that anger and animosity was because of a monster, not because of my mother.
I just felt in my heart that my mother now, because of this, could teach me how to fight Alzheimer's and live with it, so maybe I might be helpful in teaching others.
Brendan: When he was taking care of his parents, I don't think I really appreciated the--what it was taking out of him because at that stage in my life, I wasn't mature enough at the time to really see that and what was happening, but now, looking back, it took a lot out of him.
You know, he--it was his second full-time job so he was working, you know, 100 hours a week between that and his real job.
He had asked me to be his power of attorney, sign all of these documents, basically, giving away his right to be alive if something were to ever happen, all of these sort of things that you never wanna do as a son, especially in your mid-20s.
There's this giant granite boulder that sits out on the millpond, and this nature trail leads right up to that big granite boulder.
And so we just sort of found ourselves going down this path that leads to the boulder and we're sitting out there and we sat on the rock and was just silent.
The first words out of his mouth were-- was, "Brendan, I'm so scared."
And that was--that was probably the first time I ever saw him cry and it was also the first time that he, sort of, admitted how scared he was about this disease and how vulnerable he felt about it.
Greg: I've become more Larry David-like.
He's a--he is a personal hero of mine.
A bucket list of mine is to meet him someday.
He says what everyone else wants to say but is inhibited.
Not me, not anymore.
God bless you, Larry David.
Conor: Yeah, his filter's gone and, yeah, he does, you know, say inappropriate things that I have to remind him, you know, "Don't say that, Dad."
Maybe I'll give him a nudge in public.
You know, don't curse, you know?
If somebody's trying to help him out, you know, a perfect--a stranger, you're trying to help him out just like he tends to be a little bit of a jerk, and he's not that guy.
He's not a jerk.
He's a very loving, caring father and person and so, you know, sometimes I just have to kind of bring him back to earth.
David: The reason that I wanted to do this podcast in the first place is that I have been writing about, reporting, researching, trying to communicate about Alzheimer's for almost 20 years, and I've never met anyone who is as candid as you are, and who is as articulate as you are about--who actually has the disease, who can actually speak to us from the inside.
I've seen some new impairments.
You and I were talking last night at dinner, and we were talking about you need to sell your house for financial reasons, and we were talking about the numbers around that transaction, and you were having--I don't think you noticed this the way I did, but you were having some problems talking about numbers in the correct way.
Greg: It's like, how in the movie, "2001: Space Odyssey--" Dave Bowman: Open the pod bay doors, HAL.
HAL 9000: I'm sorry, Dave.
I'm afraid I can't do that.
Greg: So, HAL says, "Okay, smart guy.
You wanna write and speak from your heart, even though now you can't do it so much from your brain, your heart is the place of the soul.
There's only so much juice so we're gonna shut other things down."
I have now no feeling in both legs from my feet to my knees.
And to some degree, it's neuropathy, but the doctors have also said it's complicated by nerve signals from my brain not going down.
I have no feeling in parts of my hand.
My body is breaking down.
I have spinal stenosis, acute spinal stenosis and scoliosis.
I was just diagnosed with macular degeneration and glaucoma, which some doctors now say the eyes are the window to the brain and they feel that there is a connection between the two.
And everyone wants to do the drive-by because, one, they don't know how to handle it; two, it scares them; or three, they don't give a-- Doug: Control is really an illusion and what you're saying about suffering, it also reminds me of what Paul writes about in Romans chapter 5 where he says that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us because God's love has been poured into our hearts through the Holy Spirit that's been given to us.
Kate Granigan: Aging is a big business and so, from a consumer point of view, it's really important that the consumer who is, as we saw with the O'Briens, you know, they're fearful, they're, you know, many families are lost and so the last thing they need is someone walking 'em down the path that doesn't know the directions themselves.
Greg: I was diagnosed with prostate cancer three weeks after I was diagnosed with Alzheimer's.
I'm taking a lot of medications for Alzheimer's at legal limits: 23 milligrams of Aricept, 28 milligrams of Namenda, and I take 30 milligrams of Celexa to try to control the rage.
Melanie Braverman: You have to think outside the box because the box is irrelevant.
There is no box, right?
So you have to be adaptive and creative.
Molly Perdue: The financial burden for families is big.
It's really big.
It was estimated that I think the per-person cost of Alzheimer's is about $174,000 per person, something like that.
But we know that the care costs of what families have donated back to their communities has been about $360 billion.
When you're 87 years old and you're doing 24/7 care and your only choice is to then be declared poverty stricken, that there's a disincentive for not, you know, running out your own clock and sometimes predeceasing the person you're caring for.
Greg: We're facing bankruptcy, and it's robbing our finances, and so it's a two-headed financial fight to get the government to increase appropriations and to find ways to keep yourself out of bankruptcy, but that's probably not gonna happen.
And that adds to the loss of self-esteem, so you can't remember, you fly into rage, you've got deep depression, and now you can't pay your damn bills and you're facing bankruptcy, I don't know, David, I feel like a loser a lot.
George: In Washington, we have found the most difficult thing is to get the government to shift its priorities, absent an emergency.
Lisa: So I write stories about people living with neurological diseases, conditions, in mental health, and I've told Greg if "On Pluto" existed in the '90s when I was looking for this information, I would never have written, "Still Alice."
Alice Howland: I have Alzheimer's disease, early onset.
Lydia Howland: What?
Alice: I am not suffering.
I am struggling.
Struggling to be a part of things, to stay connected to who I once was.
Live in the moment.
♪♪♪ Lisa: I think a lot of us are really scared of Alzheimer's, and a lot of that fear comes from the fact that we're not really familiar enough with it.
We don't really understand it.
And we get uncomfortable really fast when we don't understand something or if we're not familiar with something.
And the quickest way for me to relieve that discomfort is to just look away.
The Alzheimer's Association did a study and found that about 45% of people who have a diagnosis of Alzheimer's aren't actually told that they have Alzheimer's by their physicians.
Lisa: But by not mentioning Alzheimer's, then families don't have the language and the realistic expectation of what is going to happen, and so they're being robbed of the opportunity to prepare realistically for what's going to happen.
Colleen: The role of the caretaker is really underestimated, especially financially, and so I would love to see more of a focus on kind of the caretaker's role and how are they taking--the caretaker actually taken care of, especially when the person who has Alzheimer's is kind of the breadwinner of the family.
Melanie: Caregiving is something people come to out of love, that as something they come to out of love, it should be honored and upheld, rather than penalized.
Well, we live in a culture where taking care of somebody's actually penalized and saves the community an enormous amount of actual dollars by providing this work for free.
Lisa: My friend, Michael Verde, who runs Memory Bridge, he says, "You've got to feed the feeders," because the caregivers will get depleted of all of the resources, and we're not just talking financial.
It's emotional, it's spiritual, it's physical.
And so, there's--we need to replenish the well for those caregivers or they'll burn out.
Molly: My mother used to look out at Cape Cod Bay 'cause we lived in Provincetown and she would see these buoys and she would swear when she was having a really negative day that there were drowning women.
And I had to immediately get on the phone and call the Provincetown police so the coastguard could come rescue these poor women that were drowning out at sea.
And, you know, when it first happened, I'm sure my blood pressure probably went right off the, you know, off the charts, but then, you know, as I learned how to deal with my mother and I learned how to pretend to call the police and talk her down and find a way, you know, it made everything doable.
And we know that for family members, the stress of the reaction to the dementia behavior is where so much of the distress comes in.
Greg: And then there are the spiders.
There's sometimes, at all times of day, I see platoons of them floating along the wall and they float down in--at right angles right at me, and my mother told me a long time ago, who experienced the hallucinations, she said, "They're not real.
Just brush them away."
Mary Catherine: After seeing his mother and I can see why he doesn't wanna go down that road.
I can talk till I'm blue in the face, say, "Please go see the doctor.
Please, you know, get the--" but it's not gonna change.
Conor: It's been a drag on all three of us, you know, it kind of brings us together in, you know, some sort of way.
I guess you could say it's a blessing in disguise, in some sorts.
But, yeah, it's not a--it's a marathon, it's not a sprint, you know?
Mary Catherine: Actually, he's more angry with himself than he is with anybody else, mostly.
It's the frustration of not remembering something.
He will shut down.
He'll just say, "I can't," you know, he--"I can't talk about it," or "I'm done," or he just--he will shut down.
Greg: I don't want anyone's pity.
I'm trying to explain it in ways that people might understand it so they might better understand a loved one or a friend who's going through it, so I see myself as a window not a martyr, 'cause otherwise I don't wanna do this.
Doug: People often think of eagles being these amazing birds that can fly really high, but geese, in fact, fly higher than eagles.
And if you study how geese fly, they take turns being the point because whichever bird is first, they're breaking the wind, they're expending the most energy, they're working the hardest, and the other geese in the formation are honking encouragement, and they take turns, that another bird will fly up to the front and the one in the front will drop back, and it's because they work together that geese fly higher than eagles.
And I think when it comes to suffering, when it comes to a disease that impacts not just the individual but their whole family and their whole circle of relationship, that team around that person, like Mary Catherine and your kids, and your friends, and all those who have been helping you, it's, I think, that team that helps us to be able to keep going where, if you were just that solitary eagle, I think it's hard to make it.
Greg: A death is a death.
Alzheimer's respects no demographic, no gender, race, religion.
If there ever was a bipartisan issue to stand on, it's for a swifter, earlier diagnosis for a cure.
Judy Johanson: There's 5 million people living with this disease.
So, yes, I think we need to use a megaphone to say, "Help those who are living with the disease and support those caregivers.
Greg: The number of people worldwide affected by Alzheimer's is expected to double in 20 years.
I'm not gonna be here for that.
There were times when I tried to take my life twice.
I'm not proud of that.
I need to stay and fight for my family and your family, and that's what I'm gonna do.
Brendan: Medically, Alzheimer's is obviously-- it's terrifying.
There's no heroic element to it.
You know, with cancer, we've, thank God, have created this sort of like, "All right, yeah, you've got cancer.
We're gonna stand behind you.
We're gonna battle this with you.
You're a warrior, you know?
You're gonna go fight this thing.
You're gonna beat cancer."
I guess that's the thing too, you can't really beat Alzheimer's.
And I think that is one of the reasons it's the most terrifying disease you can have.
Greg: Alzheimer's is "Invasion of the Body Snatchers."
speaker: You're next.
We're in danger.
Please, listen to me.
Something terrible!
Greg: You become someone else.
You go into rage, you hallucinate, you can't recognize people and places.
You have a complete loss of self.
[screaming] Brendan: It becomes impossible to remember them for who they were because that's the last time you remember them was--it's not just a moment; it's five years, ten years, you know, like, I even say to my wife who never really knew him before his--she didn't know him before his diagnosis.
And like, I mean, she loves him but I'm like, "You--he was a totally different person before you knew him," you know?
And I just wish--sometimes I wish that she had gotten a chance to, like, see that side of my dad, you know?
'Cause he was really--I know he keeps it together these days but he was a different guy back in the day, and he's, you know, I just--I wish that she could have shared that a little bit, you know?
Judy: And I would say to anybody on the political front, on the medical front, on the pharma front, on caregiving front, is to make this a priority.
George: Where, in fact, now the fastest-growing segment of caregiving populations are millennials.
This is now affecting all generations.
We have not yet been able to shift the focus from the image of the little old lady sitting in a wheelchair in a nursing home to all the impacts of that little old lady sitting in that wheelchair in that nursing home.
Rudy: So this is everyone's disease, and I think especially younger generation have to realize that and they need to start supporting this disease to get rid of it, 'cause it's gonna hit them twice, with 50% probability: their parents who they have to take care of, and then theirselves 'cause they're gonna live long enough to have a 40% or 50% chance of getting the disease.
This type of awareness needs to get out there.
Society needs to know this, and then we'll get more people on board to help.
Lisa: If you can delay the onset of your Alzheimer's by a year, two years, five years, collectively we're gonna save billions of dollars, right?
So, can we delay it?
Yeah.
Rudy: I like to use this acronym, SHIELD, for protecting your brain.
Shield your brain.
S is Sleep 7 to 8 hours.
That's how you get rid of the plaque and debris in your brain.
H is Handle stress: meditate, measure your expectations, try not to get too stressed.
I is Interaction.
Stay integrated in society and with your family and friends and loved ones.
Don't isolate.
Loneliness is a risk factor.
E, Exercise.
We've got a big paper showing that exercise can cure Alzheimer's mice by promoting the birth of new nerve cells in the brain.
L, Learn new things.
So, learning new things creates new connections between nerve cells.
D, Diet: Mediterranean diet, number one.
And a healthy gut with bacteria that are healthy means a healthy brain.
So, heart healthy, brain healthy, gut healthy, brain healthy.
Greg: For reasons of just not understanding this disease, or for reasons of saying, "I don't wanna deal with this disease because there are other things in my life I have to deal with, they'll say, "Oh, I can't remember a name too," to which, 'cause I'm just at the stage now I have no filter, I go, "Well, do you pee in your pants or pee on the floor or do you poop in your pants?"
And they go, "What?"
I go, "Well, that's part of what's going on with me."
Greg: We first played by the rules, then we broke the rules, then we made new rules.
And then we went off and we did establishment types of things, and now many of us, as we're coming into the final laps at life, are understanding that there's something bigger out there.
Greg: The book, "On Pluto: Inside the Mind of Alzheimer's," is not about me.
Greg: It's not about my family.
It's a window.
But it--okay, so there again, is that this is the head injury again.
You've got to tell me-- Doug: It's okay, you were talking-- Greg: And this is happening-- this is real-time stuff now.
This is happening when you have a head trauma, it-- the brain shuts and I'm totally lost it.
Doug: It's okay.
You were talking about how your book, "On Pluto," wasn't just about Alzheimer's, it wasn't about you.
Greg: Okay, yeah.
It's about embracing heaven, so it's interesting that you asked that question.
Greg: My dad had prostate cancer like me and he had severe circulation disease and he had dementia.
So there was a mix-up on getting the morphine up to the hospice at their home in East Ham and I was asked by the nurse with authority to go to CVS and ask for the morphine, which then I brought up to the nurse with my father, realizing on the way up I was delivering my father's death sentence.
What a horrible thing to go through at the time.
It just hit me, driving up.
And I said, "Whoa, whoa, whoa.
Wait, I got nine brothers and sisters.
I can't.
I gotta call the kids."
"You don't--you don't have time to call the kids.
You gotta say 'Goodbye,' 'cause he's gonna go once he has this."
So my dad couldn't speak, but he could shake his head.
He's lying in bed, and I held his hand.
My mom, in full-blown Alzheimer's, is lying next to him, holding on to him, and I said, "Dad, if you hear me, shake your head."
And he shook his head, and I said, "Dad, I want you to know we're gonna take care of Mom.
We're gonna take care of Mom.
You have no worries.
Shake your head."
He shook his head.
And I said, "Dad, I want you to know it's okay to go," and he shook his head.
And then I said, "Dad, do you see a light out there?"
He shook his head.
I said, "Dad, you run for that light.
It's okay.
We want you to go to heaven."
He shook his head.
And then finally, 'cause he's a military man, I said, "Dad, it was an honor to serve you."
I started crying, and I saw some tears coming down his eye.
When he went to sleep that night, he never woke up, my mother in full Alzheimer's, slept next to him with his arms around her.
I get the call in the morning, raced up there, and I said, "How you feel, Mom?"
And she goes, "I'm not so sure how much longer I wanna be around here."
And I said, "Mom, you go wherever you want.
You go when you want."
Colleen: He was so concentrated on my grandfather for so long because he had so many ailments that I think we missed a lot of things with my grandmother and we just kind of thought, "Oh, she, you know, it's old age."
And then, looking back, knowing more about Alzheimer's now, it makes a lot more sense and explains a lot of kind of odd behaviors that we saw and the things that she said.
But she did a really good job of hiding it for a long time, and I think once my grandfather finally passed away is when she kind of--sort of let go.
Greg: I remember getting a call one night when she was right at the end and the nurse said, "Your mother's very upset.
You need to come down and let her know everything is okay."
I woke her up, and I said, "Mom, I'm really sorry to wake you up," and she's right at the end, and she says, "No, Greg, I'm glad you're here."
It was the first time in 8 months she could use my name.
And so we talked, and--not big talk, but we talked.
So my mom falls asleep, and I got up, and I kissed her on the forehead.
Seconds later, her eyes opened wide and as plain as day, this is a woman in full throes of Alzheimer's, speaking from her heart, disabusing all the stereotypes, the heart different from the mind, says, "Greg, where are you going?"
That plain.
And I realized the moment was at hand, and I said, "Mom--" Excuse me.
I said, "Mom, I'm not going anywhere.
We're gonna ride this one out together."
And I sat down and I held her hand until she fell asleep.
I kissed her on the forehead, and she never woke up again.
Steve Ecclesine: I was there with my mother when she died and-- Greg: You never forget.
Steve: No.
Greg: Love is enough.
Steve: The second greatest thing that can happen to any of us is birth and death.
So, I got a chance to say goodbye.
Kate: You both are talking about love, you know, really, and what you're talking about is the love that your mother brought and that you both felt and that you're, you know, even today.
And when we talk about Alzheimer's, we talk often about being in the moment, really, because the moment's all we have, and I think we could broaden that to life.
Greg: Not long ago, I had a shout-out with God.
I finally yelled at him and I said, this is out loud 'cause I do that sometimes.
Doug: Hm, that's fine.
Greg: Do you know who I am?
And I heard immediately in my heart a word in a response that's a word I use all the time.
I heard, "Yes, dumb-- I made you.
And I have you right where I want you."
And I started laughing and I said, "Okay, I just needed to know you were there."
Greg: And I'm not here to proselytize.
That's not my place.
My place is to talk about how I deal with the disease in faith, hope, and humor.
I think everyone has to find their own faith, but I don't know that you find faith until you pursue faith.
Steve: It doesn't pick up the phone and call you, that's for sure.
Greg: I'm at the stage now where I wanna go home.
This fight is a 24/7 fight, and it's kicking the--out of me just to even sit in here with the camera and stuff like that.
Nobody knows what it's like, except others on this journey.
I've asked God on a number of occasions where I've prayed at night recently, "Please don't let me wake up."
I feel right now and I know others in this journey feel that we have one foot in the next realm and one foot here.
And I'm just waiting for the Lord to pull me over to the next realm, and he keeps saying, "Not yet."
I go, "Well, how about today?"
"Not yet, we're not done."
Molly: I do believe that there are things that we can do.
You know, long-term care supports, not unlike Social Security, not unlike Medicare, there are reasons why we share the risks and the costs.
I mean, it's something that started back when we knew we had to bury people in our communities and funeral costs were shared and, from there, you know, here we are in the day of insurance, yet long-term care insurance is only held by 6% of the population in the United States.
So that's, you know, that means, like, 90-something percent of people are out there without it, and, you know, that makes a tremendous difference.
So I think there's a lot of room for innovation in so many ways that underlie chronic disease in our country.
Lisa: Like a lot of others, I'm, you know, I'm solution-agnostic.
I don't care who solves this, so I'll work with anyone who is willing to roll up their sleeves and join us in this fight.
Brendan: I really do believe that "On Pluto" has had a huge impact on a lot of people's lives, the disease in general, the way that we talk about it.
Greg: The last trip I came back, there's this pretty woman, 20 years younger than me, waving at me, and you know, I don't care if you're Irish or Italian or whatever, you're gonna wave back, man.
It's a pretty woman, you know?
And she has a copy of "On Pluto."
And I said, "I'll be right over."
And when I went over to her, she said, "I saw you on TV and I saw you speak," and she said, "I'd like you to meet my father."
And she said, "I want you to know that my dad has Alzheimer's, and he wouldn't talk about it.
He wouldn't talk to any of us at all until I gave him a copy of 'On Pluto.'
And now that he's read it, he's talking for the first time about what it's like because you made him.
You took him inside the disease.
It made him feel it's safe to talk about it."
And she goes over to him and says, "Dad, see that--" This stuff doesn't just happen.
Talk about God.
"See that man over there?"
What are the chances?
"That's the guy who wrote 'On Pluto.'"
So he gets up and comes over.
He hugs me, I hug him.
He starts crying, I start crying.
We start talking.
It was--it was like a spiritual thing.
Greg: Airports are a place of great confusion for me.
They took up, for airports, a word out of the dictionary.
It's called customer service.
It does not exist anymore.
And they have these things that look like R2-D2, and it's very confusing, so my wife was poking at R2-D2, and so I said to her, "It's not working."
She said, "Yes, it is," and I said, "No, it isn't.
It's not working."
Now, I was starting to draw a crowd and, all of a sudden, I drew the attention of the TSA, and this woman, I'm sure she's very nice, but she was big.
I think she used to play linebacker for the Giants.
And she came over and said, "What's wrong, sir?"
And I looked at her and I said, "It's not working."
And she said, "Yes, it is."
And I said, "No, it isn't."
So then she pushed me out of the way and went to R2-D2 and gently pushed my wife aside, starts poking, and all of a sudden R2-D2 starts spitting all this stuff out and, in Alzheimer's, your DEFCON increases when you're confused, so I'm getting up there now.
She hands me this thing and it's this long strip thing and she said, "Here," and I said, "What the hell am I supposed to do with that?"
And then she talked to me like the two-year-old that I was and she said, "You put them on your bag."
And then I said, without thinking, in my loud voice, "Well, am I supposed to fly the--plane too?"
You're not supposed to say that.
Mary Catherine: From when he got diagnosed to now, I think it's unbelievable what people are learning and what's been--what's out there.
So I think it's increasing and I think it's going to increase.
I mean, just every time we go to a conference like this, I mean, so many people come up to us and as you--and Conor knows, you know, they're telling us--they wanna share their story, and then finally they're feeling they're comfortable enough to do that, and I think Greg's given people that avenue.
Greg: If someone doesn't tell their own story, someone will tell it for them and not accurately.
Folks, we need collectively to tell our story.
It's the elephant in the room, yet this elephant forgets.
Conor: It's a scary thing, but that's why you have to, you know, treasure every moment with them and just don't take it for granted.
Greg: We need to start to give it about a lot of things, look at what we're doing in society today.
We're so busy talking over people and hating people that there's no love.
Maybe Alzheimer's is a bipartisan disease that affects women more than men, the minorities more than white Irish guys like me.
And if there was anything that we can all come together on, it's the fight against Alzheimer's and dementia.
But we have to build that critical mass, and if that's the one thing I can help do before I leave this planet and it's the one thing you have to have a vision, and that's my vision when I get up.
And I don't wanna see my kids have this.
I don't wanna see your kids--I don't wanna see your grandkids or anyone who's watching, their grandkids, to have this.
This disease--sucks.
Greg: You want to get an early diagnosis and everyone on this planet needs to pay attention to brain health.
I was asked by the Alzheimer's Association to speak out in Los Angeles.
It was called "A Night at Sardi's," which they don't do anymore, and it had all the top Hollywood people, Oscar, Emmy, Tony Award winners, anyone you could think of.
David Hyde Pierce: Good evening, and welcome to the final performance of "A Night at Sardi's."
Greg: They had entertainment and about 1,000 people there, and they raised a lot of money, over a million, it was huge.
I was asked through the Alzheimer's Association to be the keynote speaker.
Normally, I don't get nervous before I speak, but instinctively I looked up to heaven and I said, "Mom, this is for you."
I heard my mother's voice saying, "Greg, you rock this.
You just rock it."
And I went out and I rocked it.
And as I was speaking, it was really cool.
There was a woman who was standing behind me.
She made me feel very comfortable, very secure, and at the end of my speech, I was overwhelmed and I turned around and I wanted to thank this woman.
She was gone.
So I went back to the table, turned to my wife and I--Mary Catherine, and I said, "Who was the woman standing behind me?"
She said, "Greg, there was no woman."
I went around the table to ten people, and I said, "Who was the woman?
There was a woman--" "Oh, Greg, you were on the stage alone."
And I said, "No, I wasn't.
My mother was there and the souls maybe of many others who have died of Alzheimer's or dementia were there, celebrating this cause, and I wasn't alone.
And I want people who are listening to realize you're not alone.
They're not alone.
It was one of the most moving moments of my life.
Kate: You know, and people recognize that, you know, that this--that despite the fear or despite the challenges, that there is hope and I think you are someone who represents that.
Molly: What we do know is that in 100 years, none of us will be sitting here, but other people, hopefully, will be, and what is gonna be our legacy that we leave for them?
George: The larger audience we can gain for his story and him, and thus the story of what the disease does to an individual, the more the better.
Doug: While listening to you tell that story, it actually reminds me of Frank Capra's movie, "It's A Wonderful Life."
George Bailey: I'm in trouble, Mr. Potter.
Doug: George Bailey, played by Jimmy Stewart, feels like he's--all he's got is a life insurance policy and he's so depressed that he thinks about taking his own life.
Though the end of that film, of course, when he gets the message saying, "Remember, George, no man is a failure who has friends."
And thank God for friends and faith and family, for people who are facing this disease.
Colleen: You never know what life's gonna hand you and you never know, you know, our struggle right now is Alzheimer's.
Everyone's, you know, everyone's got something.
And most people have more than one thing, so, no, I don't, I think it can be very easy to get caught up in life and stuff gets busy, especially when you have kids and, as I'm learning, especially having a toddler.
It's very easy to get caught up in, you know, we have grocery shopping and chores and laundry and all that, you know, all that stuff, and work and you have to remember to come and take pause and enjoy life and sometimes I think, you know, Alzheimer's or other challenges people are facing can kind of force you to do that.
Greg: We're all rushing for the cure for Alzheimer's and I think that's so, so, so important.
But I believe, and again, you wanna call it the universe, you wanna call it God, that there's a bigger purpose here to learn how to go out with some dignity and do some good things on the way out.
David: You are this exceptionally unique individual who can share with the rest of the world what you and all of the other people are going through and it makes you so valuable to us.
We need what you have.
This is being selfish as hell, I'm not thinking about you right now, I'm thinking about the rest of us.
We need what you have and what you do because I've never met or talked to anyone like you.
Mary Catherine: It's what he says, it's brought us all a lot closer to--as any disease does.
You kind of hop on board and do what you have to do.
Rudy: But my hope is that 50 years from now there won't be patients 'cause you stop it early on, just like heart disease is going down because we stop that disease early on.
Diabetes is going down.
I don't think a day goes by where I don't think about Greg and his smiling face and his cheery disposition and think, "Man, we've got to help this guy."
Lisa: It's been one of my life's greatest joys and gifts to know Greg and it's so strange and surreal to me that the reason I know him is because he has Alzheimer's.
Greg: In three words, I can sum up everything I've learned about life, quote, "It goes on."
Greg: Ultimately, they will find a cure if we can build a critical mass.
But in the meantime, people like me, we have to live on faith, hope, and humor.
And that's what we're trying to do, and we're trying to tell our story and I really need your help in telling this story.
God bless you.
♪♪♪ ♪ I need someone to hold ♪ ♪ To hold on for me ♪ ♪ To what I can't seem to hold on to ♪ ♪ The life we used to live Is slipping ♪ ♪ through my fingertips ♪ ♪ Like a thread that's unraveling ♪ ♪ I hope I'm one thing worth not forgetting ♪ ♪ Tell me that you'll never let me go ♪ ♪ When I can't find the words that I'm trying to speak ♪ ♪ When I don't know the face in the mirror I see ♪ ♪ When I feel I'm forgotten and lost in this world ♪ ♪ Won't you please ♪ ♪ remember me ♪ ♪ Remember me ♪ ♪ Remember me ♪ ♪ Remember me ♪ ♪♪♪ ♪♪♪ announcer: This film is dedicated to the families, caregivers, and friends of the 50 million-plus individuals worldwide who've been diagnosed with Alzheimer's and other forms of dementia.
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Have You Heard About Greg? A Journey Through Alzheimer's is a local public television program presented by PBS SoCal