Episode 470 - Have You Heard About Greg? - Greg O’Brien Chronicles His Journey with Alzheimer’s

Welcome to Voices in My Head, the official podcast of me, Rick Lee James. I'm a recording artist, a singer, a songwriter, an author, a worship leader, and an ordained minister in the Church of the Nazarene. The Voices in My Head podcast is where I discuss music, movies, books, pop culture, theology, and more with friends, colleagues, and sometimes just by myself. Now make sure to let me know what you think of today's episode by leaving me a review on iTunes or by tweeting at me @RickLeeJames on Twitter. And please join my mailing list at RickLeeJames.com where you can receive an email every time a new episode is released. By the way, in case you're interested in a daily dose of kindness and encouragement beyond this podcast, I also run the Twitter account @MrRogersSay where I post daily quotes from Fred Rogers, one of the voices in my head. Well, I guess that's it for the intro, so sit back, relax, and listen to the latest episode of Voices in My Head.

Welcome back to Voices in My Head. As always, I am your host Rick Lee James, and I'm so glad that all of you who are listening today have joined us once again for what I know is going to be a fascinating conversation. The new film, Have You Heard About Greg, puts a human face on the terrifying disease of Alzheimer's and other forms of dementia. The heart of the story is the resilient spirit of the O'Brien family that has already lost several family members in their fight against Alzheimer's. Greg O'Brien, a Lifetime Award-winning investigative reporter, was diagnosed with early onset Alzheimer's at the age of 59. And has committed his quality time remaining to getting people talking about this quiet killer and increasing the research funding. This is a unique cinematic journey through Alzheimer's with faith, hope, and humor, featuring an array of dedicated experts who have joined the fight, who will hopefully inspire you to get involved. Greg O'Brien is the producer and star of the documentary Have You Heard About Greg? And he's here for a visit today. Greg, Welcome to Voices in My Head.

Well, thanks. Um, the, the, the producer, which is part of the story, is this gentleman. I'm just in God's horn section, okay?

Okay, he got it.

The producer is Steve Ekelson. Uh, he's a Hollywood filmmaker, and Steve and I grew up in Rye, New York, outside Manhattan. And his mother and my mother were friends. Um, we're both from large families. I'm from one of 10 kids. And I think Steve is from '08, but he'll correct me on that. But they were friends, they were den mothers together, and they both died of Alzheimer's. And so the film itself is dedicated in its own way to our mothers. And I've been blessed out in Los Angeles, there's a whole crew, and I won't get all their names right. Brad Wall, former top executive with Warner Brothers, Scott Kennedy, Amy Prenter, just helping out and there's a long list of other people, but I'm not going to remember them.

Well, they all did a wonderful job.

I will remember them, but I won't remember the names.

I understand. I totally understand that. Well, they definitely did a wonderful job with the film. I had a chance to finish it earlier this morning, and I'm so glad that you mentioned your mother and the way that you both, you and the producer, wanted to kind of dedicate this film to mothers. And I wonder if we could maybe start there. Share today with your story, because I know that Alzheimer's affected you really at a very young age, partially because of your mother and what she was dealing with. And I wonder if you could just share some of that story with us.

Sure. Um, Alzheimer's took, um, uh, you know, my maternal grandfather, my mother, my father who died from dementia and other complications, and, and my paternal uncle. Um, I had a front row seat pretty much, with the exception of my uncle who was down in the Carolinas struggling through this, but I would see him periodically. My mom became the hero of my life, and she taught me over time how to fight this demon. And it is a demon, and you fight it in faith, hope, and humor. There are so many stereotypes about Alzheimer's that are so incorrect, and I understand how stereotypes come about. But the experts will tell you that Alzheimer's is a disease that can take, there are always exceptions, 20 to 25 years to run its serpentine course. And my mom, it took her all of 20, 25 years. And in the beginning with all the kids, we just, you know, she'd be in Rye, New York, outside Manhattan, Westchester County, where we lived on Brookdale Place. I live on Cape Cod now and they moved here before they passed away. She'd be staring out the window in the kitchen and just talking to someone. And we just thought, must be the stress of all the kids. And then there are other things. And so this was, looking back, I could see some of the symptoms. You know, she had a range of 20 or 25 years on this course. And so what happens is that sometimes you talk to someone and someone will say, well, my mother, was diagnosed and she died 7 years later. All of that may be true because there are exceptions, but the reality is— and I would tell that person— the reality is, is that your mother probably suffered silently for 15 of those years and was afraid because of the taboo. And what my book on Pluto Inside the Mind of Alzheimer's and have you— the film Have You Heard About Greg?— is to kind of shine a light on this disease and to show people that there's a lot— the disease takes a while to run its course, but there's strength in numbers, and to get people talking more open about it and open in the way of faith, hope, and humor. And my mother was very instrumental in that with me and encouraging me.

Well, thank you for sharing that. And, you know, you just mentioned a few moments ago that there are a lot of stereotypes around this disease, and that's the reason that people often don't talk about it. I wonder if you could share what are some of the stereotypes that you think people have about these, and maybe some of them are founded and some of them are badly misconceived, but just some of the reasons you think we don't talk about it more.

Well, first of all, it's the brain. You can't remove a brain. Okay. And, and, and I think that people don't want to talk about it because it's a scary thing. It's your brain, keep it inside. And it— you don't get— and this is an important thing to say— you don't get Alzheimer's the day you're diagnosed, just like you don't get cancer the day you're diagnosed. I have advancing prostate cancer now and other things breaking down in the body. When the brain signals don't go, it'll break things down, and the disease will find the lowest common denominator. If If you're pushing because you want to save your speech to some extent and you're writing, then the enemy says, well, we're just going to shut this down and shut it because there's only so much juice. It's like the film— you're young, I don't know if you saw it— 2001: A Space Odyssey.

I have seen it.

And HAL was the maniacal computer, and the astronauts would say, HAL, go a little faster, turn left, turn right. I'm paraphrasing here. And Hal would say, I can't, there's only so much juice. And that's what it is. And so, but God has given me the ability to fight, and the Lord deserves all the credit, not me. I'm just in God's horn section in this symphony. And I really, I stink at music. So, but it's The Lord has taught me how to keep a focus on it. And part of my book on Pluto and the film is to show people, to prepare them for paradise. You know, I want to see a cure for Alzheimer's. I want to see a cure for cancer. But part with, you know, as the great Bugs Bunny once said, and he was paraphrasing someone, don't take life too seriously because nobody gets out alive. And Part of my journey, I believe, through God, the most imperfect guy in the world, is basically to open doors for people and so God can touch their hearts, which is the place of the soul. And so I could do interviews like this, but I think you were kind of asking about it. Today, 60% of my short-term memory can be gone. And I have notes here I'm looking at. Be gone. So don't try this trick at home, as the saying goes. But 60% of my short-term memory can be gone in 30 seconds. I don't recognize often people I've known all my life. I see things that aren't there. I go into tremendous rage. I deal with black hole depression and, and all the symptoms, and it's getting worse and worse now. And I was diagnosed, by the way, after two serious head traumas, and which doctors said I probably shouldn't have survived. And a head trauma is not going to cause Alzheimer's or another form of dementia, but if you're predisposed, if all the genes and everything else is in place, it could bring it on earlier. And it's part of the early onset with me. And so, but it is what it is. God doesn't give you anything more than you can handle. And this journey has taught me more and more to live one day at a time and let go and let God, you know. And two clichés, but boy, do they work.

Yeah, well, you know what, clichés are sometimes there for a reason because sometimes there's truth to them, for sure.

Yeah.

Thank you for sharing about that. And I was just thinking about, you were diagnosed, I believe, at age 58. And it's been about 59. Okay. And I think it's been around 13 years.

Uh, yeah, the sad thing, if you do the math, I could have another 10 years or so in this journey.

Wow.

And I don't want that. And so, um, I'm not, uh, fully treating my prostate cancer now because I don't want to. I may get some radiation soon at Dana-Farber in Boston to keep it in its, in its core. My PSA is up Um, but, um, I don't want to take it. We have some wonderful nursing homes in the country, so please don't anyone be offended. I was there for my parents, and I don't want to put my family through that and, and the bankruptcy and all of that. I just hope when my time comes, God just takes me.

Yeah, well, I'm amazed at the way that you carry yourself and your attitude, because I, I think you were diagnosed with cancer within weeks of your also—

Yeah, 2 days after. And I tell this story often. First of all, God, I believe, has big shoulders. Yeah. And there isn't any word God hasn't heard before. And so I was upset the other day and I started yelling at God. And God has big shoulders, you know. It's almost like, here he goes again. And God is saying, you know, it's— I always talk to someone the other day, I said, I sometimes with the Lord, I feel the Lord is like Lurch with me, where in The Addams Family, "Ugh, here he goes again." You know what, I just lost my train of thought here.

That's okay.

But it was important. Oh, so yes, I think God teaches us how to speak and work through the heart, which is the place of the soul. So I had, and I won't use the words for it, just the letters, I had a WTF talk with God the other day. Sure. And I was yelling and screaming at God and I said, you know, you gave me Alzheimer's, you gave me cancer. I've lost 30% of my sight now. I had major spine reconstruction surgery because the body's breaking down. Parts of my body are numb. And I'm trying to do my best. Do you know who I am? And I believe God will speak in your heart and use words that you use all the time so you know it's God. So this came out from nowhere. I said, do you have a clue who I am? And I heard like a bullhorn in my heart and my soul, and a word I use all the time, yes, dumbass, I made you and I have you right where I want you. And I said, okay, that's good. I just want to know you're there. That's all I needed to know.

That's, you know, that's— I've heard you tell that story on the documentary, and I love the honesty there, and I love the way that you talk about your relationship with God. And at some point in the documentary—

but I just want to make it clear for anyone, I didn't mean to interrupt.

No, no, go ahead.

I'm just a regular Irish guy, okay? I'm not a saint. I'm not, I'm not. You know, I always kid with people. I tell people, look, I've committed every sin a man can commit but murder and adultery, and I've probably been tested in both. So I'm not, I'm not, I'm not this great guy.

Sure. Well, and I think when it comes to our spirituality and our journey with God, we're all beginners no matter how long we've been walking it. And at one point in the documentary, I, I can't remember exactly how you phrased it, but I love the way that you were talking about the way that, that God will speak to us, um, as you just said there, in ways that we understand. And I've often wondered at times, because I'm actually studying right now to become a medical chaplain and I'm doing my master's, and there are times that I'll encounter people who I wonder if they can hear me or not. And I think in those moments that there must be a way that God is communicating in a way that we can't, and we don't know what they're receiving from the Lord in those times. And I think that you are evidence of that. Of the way that God is still speaking. It may be different some days than it is others, but I think you're open to receiving that, and I think that's a very important part of the journey for sure. Well, I wanted to say thank you for being, I guess, brave and transparent in this. You've talked about being a regular guy, but you are so transparent in your story. I haven't had a chance to read your book yet, but I have a feeling that there's a lot in there to help people who are going to get it on Amazon. So yeah, and we're going to have all the links on our website to your book and to the documentary so people can get to that. But one thing that I noticed, a lot of people might just feel like Job, and I'm sure you've had those days where you just decided, you know, there must be a lot of despair and a lot of pain with that. But as you have said, there's also a lot of humor in the film. There's, there's a lot.

But you know what, on the Job thing, um, I have a good friend of mine who wrote Still Alice. It became a movie.

Yes.

Lisa Genova. She's a very good friend. She lives in the next town over. So, and there's a word I'm going to use here. It's not so bad, but it's so typical. So she knows all the stuff that's going on. This gets back to the Job analogy. And she said to me, what'd you do to piss off God? I started laughing and I said, remember Job in the Old Testament?

Yeah.

I said, it's all going to be restored, but It may be for me in the next realm. And so that's a good analogy.

Yeah, and Job is one of those— I really think it's a parable for all of us in those moments when there's no rhyme or reason to it and we don't know what to do. And I think many times those scripture stories are there just to show us that God is walking with us in those times. We don't get an answer for it, but there is a presence for sure.

Well, it's the footprints— again, another cliché— but it's the footprints in the sand. Yeah, which is so powerful.

Definitely, very much so. Well, you mentioned, uh, your, your friend Lisa Genova and the book Still Alice, and, and that was another book that was made into a film, and it was an Academy Award-winning film. Tell us what was so important, or why it was so important, to include her insights into this story, um, in telling the tale, because she makes several appearances in the documentary.

Yeah, I, I first met her, um, because she lives in the next town over. And I knew she had written Still Alice. And I was starting to write a book. Once I got my diagnosis, I wrote about 2,000 pages of notes and gathered information because I was afraid I'd forget. And then just waiting for the moment when I felt God said, okay, go with it now. And so I emailed her and said, can we have coffee? And next town over, and we became friends. And she encouraged me. And, you know, she's a big help, a big encourager. And I had also William Martin, who's a— and Anne LeClair, who both are New York Times bestselling writers. And they kind of surrounded me and directed me and helped me. And I couldn't write Pluto today. Yeah, I couldn't. But there are times when I wrote it, and I'm sure a lot of your audience will understand, where you learn to write and speak from the heart, the place of the soul, as my mother taught me. And I'd be writing on my laptop, which I'm using to look at you right now, and I'd look at something I just wrote and I would say, where did that come from? I mean, it would blow me away because I know it wasn't me. Yeah, you know, all glory, all honor. I know that's not— I'm not that good. And, uh, you know, I'm— as a journalist, I'm good, but, but this was— and I would say a couple of times, where did that come from? Yeah. So I, I want to give the Lord, yeah, obviously all the credit. It's God. He made all of us. And, uh, for a good friend of mine who is a, uh, a preacher, uh, out in, in Kansas City, um, once said, uh, Keeping it simple. Let go and let God.

Yeah, very much so.

Guy's name is Mike Bickle, and he's a, you know, I haven't seen him in many, many years, but he's a tremendous force in the Lord.

That's terrific. Well, I'm actually heading to Kansas City next month. I'm leading some music for a conference.

Oh, look up Mike Bickle.

Mike Bickle.

I have to—

B-I-C-K-L-A. All right. You know, if you mention my name, he probably wouldn't know me, but he'd know my brother-in-law Lou McGeorge.

They were friends. Oh, okay. Great.

Well, I'm writing the name down now so I can try to look him up for sure.

Yeah.

Well, let me ask you another question relating to the film. I know that filmmakers and people who are in films, they have a lot of motivations behind doing that. I have a feeling that your motivation for releasing this film is different than a lot of people's for sure. What's your biggest hope?

The team that we have was simpatico on this, but You're right, people. So maybe ask the question, just knowing this, that we had it. I didn't have to get into fights, but they listened to me. It was almost like when I wrote on Pluto, I insisted on telling my own story. And, and then work through— when you're dealing with a book, there's certain ways and things that you need to do, and when you— for flow, and likewise with a film. But be true to your story.

Yeah, be true to your story. That's fantastic. How long did it take you to put the film together? How many months did they spend?

2 years.

2 years.

Wow. 2 and a half, 2 years.

Really quite an endeavor. And I'm sure there were all kinds of challenges even in the midst of it.

I couldn't have done it without the Steve Ekelsons, Brad Burr, Scott Kennedy, Amy Prenter, and millions. And I'm forgetting all the names and I apologize right now for that. But with the team, I couldn't have done it without them.

Well, I'm so glad that they were able to get in touch with you and get this to happen. One of the parts of the film I enjoyed is you said that Larry David has become your hero because there's like all inhibitions are gone at this point.

I wonder if you— yeah, he has no filter. And I think we all want to be Larry David. And, and so it— because he says what he wants to say. Right. And, and so I I so relate to that in Alzheimer's. You probably might be offended that I said it like that, but maybe he might enjoy it. I have a— wait a minute, I can find it here. Hold it. Um, the producer had some connections to Larry David. Oh yeah, I'm showing a picture of Larry right now.

Oh, I see.

Autograph for me that basically said, "To Greg, here you go, Larry David." It was hanging in my office and, uh, Larry David, which I hope I get to meet someday, is a true inspiration to me. But on the spirit of the story of inspiration, I don't know how much time. I wanted to tell an anecdote about my mom. So just to make sure we have enough time.

Please feel free.

Yeah.

It's all part of the faith, hope, and humor part. My mom, toward the end of her travel in Alzheimer's, her journey, would see the color yellow all the time. And my wife would be driving. This was after my father— my father was still alive, but he was on his way too. And she said, well, look at that yellow this, look at that yellow car, look at that. And Mary Catherine would say, what is it with your mom and yellow? All of a sudden, I start driving around and I start seeing yellow.

Oh, wow.

And I said, what is this all about? So as the journalist, I, I researched yellow, and anyone can do that. And you'll get a lot of different definitions, all of which are kind of cool. But one thing you'll come up with, it'll say yellow is the color of angels. And I said, oh my God, the angels are taking my mom home. And yes, this was after my father died. The angels are coming to take my mom home. And I felt that in my soul. So my brother Tim went out and he bought a yellow Jeep, two-door yellow Jeep. I went out and I bought a four-door yellow Jeep just to show my brother that mine was bigger than his. It's kind of an Irish joke that doesn't go anywhere, but I don't want your viewers to hang up yet. But when Tim and I didn't know this until Last summer, and I wish I had known it before I wrote the book, Tim was telling me that when he pulled the car up and went into the house and said, Mom, I want to show you, because she had been talking about yellow, yellow Jeep, and my mom looked out in the throes of Alzheimer's and said, oh my God, it's beautiful. Do you know yellow is the color of angels? Wow. She said that to Tim as, as she's going off the ledge. So when it came time for me to take her to the nursing home, Tim was packing and I was in the car and I was driving him. I called him. I said, you're never going to believe this. There are two yellow cars in front of us and two yellow cars behind us. And then they peeled off and I called them back and I said, just coincidence happened all the way down to the nursing home. So my mom basically went there to die and she had told me that. And I said, Mom, you go, you go home to Dad. I had two young brothers who died. You go home to see the family. And so one night, she's only there for 4 months, I think. One night I got a call from the nurse and said, your mom is very upset and she's scared and you need to come down. So it was the nursing home 2 miles away. It was a wonderful nursing home. And I got there and I woke her up and I said, mom, and she's right at the end. I said, I'm sorry to wake you up. The nurses here said that you were scared. She opened her little eyes. She's 5 foot 1, about 105 pounds, 10 kids, 5 miscarriages, so go figure. And she said, "No, Greg, I'm glad you're here." I've written about this in Pluto. And it was the first time in 8 months she could use my name. Wow. And she had a countenance about her. Just as you know, sometimes when people are getting ready to die, doesn't happen all the time, there was a countenance. And I had put a picture of her father, my grandfather, who died of Alzheimer's, at the foot of her bed. So every morning when she woke up, she would see him. And, you know, people will take issue with this and that, and that's fine. We live in America. But I don't care what anyone says. I felt the spirit of my grandfather in the room. I felt his spirit in my heart, in my soul. And I said, wow, something's going to happen. And I sat down and I held my mom's hand. And we talked where she couldn't talk before. Not big things, little things. And I waited until she closed her eyes and I got up and I kissed her on the forehead. She was asleep and immediately she woke up and very plainly in the final stretches of Alzheimer's said, Greg, where are you going? And I realized that the moment was at hand. And I sat down, I said, Mom, See, this is always tough to talk about, but I said, "Mom, I'm not going anywhere. We're riding this one out together." And I held her hand till she fell asleep. I kissed her on the forehead and she never woke up. Fast forward, I'm almost done with this. Fast forward, months later, I was invited by the National Alzheimer's Association to speak before a Hollywood group. It was called The Night at Sardi's. It was one of the last ones they had where 1,000 Hollywood people, Emmy Award winners, Oscar winners, entertainers, they were all there. They raised millions of dollars that night. And I was the keynote speaker on Alzheimer's. They had a lot of entertainment after me. And I'm standing backstage and I'm getting really nervous. And generally I'm not nervous before I speak. And I had a prepared speech and I looked up to heaven. I said, Mom, this is for you. Immediately in my heart, I'm just telling you, but I, I know the difference between my head and my heart. I heard very loudly, Greg, you just rocked this, you rock it. And, uh, and, and that's how my mom would speak. And I went out with my speech and I rocked it. And, um, and there, while I was speaking, which was kind of cool, there was a woman standing behind me. She made me feel so, uh, wanted. She made me feel so safe, so encouraged. And, you know, I wanted to see who she was, but I kept saying, no, keep focused. She made me feel so loved. And at the end of the speech, 1,000 Hollywood people stood up and applauded. David Hyde Pierce, the actor, was the emcee. And he goes, that's what we're talking about. I turned around because I wanted to thank this woman, and she wasn't there. So I went back to the table, tables of 10. And I sat next to my wife and I said, who was the— and this is in my book— who was the woman standing behind me? She was so nice. She made me feel so encouraged, so loving. Who was she? And Mary Catherine said, what? And I said, who was the woman standing behind me? She made me feel loved. She made me feel, uh, so comforted. She made me feel like I wasn't alone. Who was she? And she said, Greg, there was no woman. And I talked to the 10 people at the table, and they said, Greg, you were on the stage alone. And I said, no, I wasn't. The spirit of my mom was there, maybe the spirit of thousands of others who are in God's kingdom now who died of this disease.

Wow.

She was there. She was on the stage.

It makes me think of the writer of Hebrews who said that we are surrounded by so great a cloud of witnesses. And I think I think there's something to that for sure. Thank you so much for sharing, um, not just that story but so much of yourself. Um, I appreciated the documentary. I look forward to reading your book, and I want to let all of our listeners know as well that we're going to have links in our show notes and on our website to the movie, to the books, ways they can help. Um, before we close today, is there any final thought that you want to share with my listeners today? Anything that we didn't get to talk about that you would like to?

Well, um, I probably said this before, my advice having failed at so many things in the Lord is let go and let God. Yeah. And we, we serve an awesome Lord, Father, Son, and Holy Spirit. And, um, I've learned the hard way, uh, because I'm stubborn Irish But I'm not letting go. So I would encourage anyone listening who are dealing with problems, don't let go. God is there, and it may not seem like you can, but the Lord doesn't give us more than we can handle. And there's some real horror stories out there, but the prize in coming in the next realm is, is worth it. That's all I would say.

Wow. Wow, thank you so much for that. Greg O'Brien, thank you for being one of the Voices in My Head this week.

All right, God bless you. Thank you.

Thank you for joining me here this week on Voices in My Head. I hope you'll visit me on my website at rickleejames.com where you can find out more about me, get my music on vinyl and CD, follow my blog, and even schedule me for a concert or a speaking engagement. Better yet, even a book signing in your neighborhood. You can find all that and more at rickleejames.com. Also, it would mean a great deal to me if you could write a review of this podcast on iTunes. The more positive reviews that we receive, the more visible this podcast will be online. And now for the benediction: May the God of hope fill you with all joy and peace and peace in believing, so that by the power of the Holy Spirit you may abound in hope. God bless you, and thank you for listening to Voices in My Head.