Barbara Howard: Alzheimer's research is the focus of a nationwide campaign being dubbed Move for Minds that comes to Boston this Sunday, June 3, with broadcaster Maria Shriver there. She'll be hosting along with Greg O'Brien, he'll be there as well. Greg is living with Alzheimer's. Maria is on the line with us right now. Talk about what is happening on Sunday.
Maria Shriver: Move For Minds is a partnership we created four years ago with Equinox. I wanted to go into these gyms where people were concerned about their bodies, focused on fitness, and try to spread the message about brain fitness to them. The goal is to get people thinking not just about their bodies, but their brains, because what we now know about Alzheimer’s is that it's 20 years or longer in your brain. And we're trying to get the message about caring for your brain and preventing Alzheimer's to people who are in their 30s and 40s.
Howard: Your mother, of course, is Eunice Kennedy Shriver. She's a sister of President Kennedy. But it was your father, Sargent Shriver, who inspired you to take up this cause. He was a rather vibrant man, a diplomat, an activist. He was perhaps best known for being the driving force behind the creation of the Peace Corps. But then Alzheimer’s struck, and you've thrown yourself into this cause. What does it mean for you to be so involved?
Shriver: Since it was my father, I started looking at this as something that happened to older people, and particularly maybe older men. And then I found more and more women, and when I kept going around the country saying ‘I think this is happening to women,’ everybody said to me ‘no, you're crazy.’
Howard: Tell me about the numbers.
Shriver: Well, the numbers, it's every 65 seconds a new brain is diagnosed with Alzheimer's. And two-thirds of those brains belong to women, and no one knows why that is.
Howard: We're going to turn now to get an insider's view of Alzheimer's from a man who is living with it. Greg O'Brien of Cape Cod was just 59 years old when, like his mother and his grandfather before him, he was diagnosed with early-onset Alzheimer's. As a professional journalist all his life, he has been chronicling what it's like to live with Alzheimer's, and he's been featured in a film, he's been in a series of radio pieces that aired on NPR. And he's also written a well-received book titled “On Pluto: Inside the mind of Alzheimer's.” Thanks for coming into the studio, Greg.
O’Brien: It’s a pleasure to be here.
Howard: Your children are grown up now, but when you were first diagnosed, that was nine years ago. What was it like for them?
O’Brien: When they got the word, they were worried about what was happening. And we went out to Coronado as a family, and I got there early with Brendan and — he's my oldest boy — and I made him read the medical reports. And he didn't want to read them, and he said ‘Dad this is B’ — I won’t use the words — ‘this is BS, this is BS.’ And I said ‘no Brendan, read it.’ And he was yelling and screaming, and finally he took my medical records — 30 pages declaring I was losing my mind — ripped them in a million pieces and said ‘this is BS, Dad.’ He buried his head on my shoulders and cried.
Howard: You know, somebody listening to you Greg, though, would say it has been nine years. You sound pretty OK. Your delivery doesn't show what the day to day…
O’Brien: If I showed you the ugly side then you would pity me. This has just happened just recently, this is how it goes: I was — my son Connor is with me every day now, I don't drive — and I was in the supermarket on Cape Cod, in line. And I got to the counter, I knew the woman, and what happens is you lose continence. And I felt this, I’ll just say it, this huge flushing going down my left leg. I didn't want this woman to see it. I didn't want my son to see it. So I pushed up against the counter and then I got the shopping cart and walked outside, into the car. It wasn't until the way home, my son, almost like being the parent now, said ‘Dad, did you pee in your pants?’ And I said ‘Yeah, I did again.’ But I don't want anyone's damn pity. I'm a journalist and I'm telling a story, and that's just what I’m supposed to do.
Howard: Is that what it is that brings such honesty, when you tell these stories? That you're a journalist at heart.
O’Brien: I just hear in my mind, ‘Don't screw it up, Greg. Don't screw it up.’
Howard: I would think that your son, at moments like that, I would think that he'd feel honored to be helpful to you.
O’Brien: I think he is, and just like my son Brendan and my daughter Colleen. They've all risen to the occasion and it's made us a stronger family.
Howard: Talk about some of the daily challenges of living with Alzheimer's.
O’Brien: It's like having a sliver of your brain shaved every day. So where am I today, about 60 percent of my short-term memory can be gone in 30 seconds. More and more I don't recognize people I've known all my life, including my wife on two occasions. And I experience penetrating, horrific, Stephen King-type hallucinations and fly into an inexorable rage when the light in the brain goes out. You know, I have a debilitating, more and more loss of filter and judgment and time and place, and depression seems to have no bounds or bottom.
Howard: I know you've talked about when you've run into people on the street. You had one episode where a fellow came up and gave you a big hug, he'd known you forever. You’re like, ‘I don't know who this man is.’ You've made such light of it. I mean, it's a very serious thing, but you seem to have brought humor in some ways to this horrible disease.
O’Brien: It's the Irish in me. And you know, if you can't laugh at an enemy — and Alzheimer’s is a demon — then the demon owns you. You have to laugh, and with that humor lift other people. I've said many times that I can't do this without faith, hope, and humor.
Howard: Well, and your family. One of the things I think that's brought some lightness to your life is your granddaughter. What, she's about a year and a half old now?
Howard: When she came into the world, did that give you any relief?
O’Brien: Yeah, I was at the stage where — I get emotional talking about it — but I kind of wanted to let go. And then I became a grandfather.
Howard: Let me ask you about this other diagnosis you've had: prostate cancer, stage 3. You had to make a decision.
O’Brien: Yeah, I'm not treating my prostate cancer. As a reporter, I was there when my mother died, and there when my grandfather died. And by the way, my mom, she was a caregiver for my father while she had Alzheimer’s. And I became her family caregiver, and then she succumbed.
Howard: So your decision not to be treated — was that a way to have what you might call a more graceful exit? Is that what you're looking at here?
O’Brien: Yeah. I kind of wanted to have a say in how it was going to go down. I have to tell you, I'm not afraid to die.
Howard: You're not afraid to die. But are you afraid to live to the end with Alzheimer's?
Howard: Is that what's prompting your desire not to treat the prostate cancer?
O’Brien: Yeah, I'm afraid. You know, I can sit and talk and you go, you know, and people drive by and they go, ‘Greg, you look so good.’
Howard: And you do.
O’Brien: It’s really, it pisses me off, because you’ve got to look inside the brain.
Howard: What can families and friends do to be of help with someone who has been diagnosed with Alzheimer's?
O’Brien: Love. Four letter word.
Howard: You're getting a lot of that at home, sounds like.
O’Brien: Yeah, yeah I am.
Howard: Thanks so much for coming in.
O’Brien: God bless you. I appreciate this.
Howard: Thank you too, Maria.
Shriver: Thank you. I just, can I say one final thing?
Shriver: We so rarely talk about what's going on inside of people. So I just want to thank Greg for the courage. What he said here today is so deeply moving and raw, and I feel honored to have just listened to it.
O’Brien: Well, I'm honored to be on your team, Maria. Team Maria.
Shriver: Thank you.
Howard: And the two of you, Greg O’Brien and Maria Shriver, will be taking part in an Alzheimer’s focused Move for Minds event, coming to Boston on Sunday.