Ep 84: Greg O'Brien – Advocating for Scientific Research for Alzheimer’s

Journalist and author Greg O'Brien, diagnosed with early-onset Alzheimer's over a decade ago, shares with BrainStorm host Meryl his determination to be heard at the Washington D.C. rally at the Lincoln Memorial to protest proposed cuts to NIH biomedical research funding that would critically affect Alzheimer's disease research.  Greg also candidly shares what it takes for him to navigate at this late stage in the disease.

This episode also features a TopLine commentary by George Vradenburg, founder and chair of UsAgainstAlzheimer's, on the mobilization of patient advocacy organizations across diseases fighting to maintain the integrity of America's biomedical and scientific research.

This episode is sponsored by Genentech.

Transcript

Greg O’Brien (00:00):

Ernest Hemingway's brilliant work, A farewell to Arms. He wrote quote, the world breaks everyone. And afterwards some are strong in the broken places. And so I pray for all of you today to be strong in the broken places and that's why we're all here today with drastic cuts on the table for critical medical research for Alzheimer's and cancer and other horrific diseases, innocent lives will be lost.

Meryl Comer (00:31):

This is BrainStorm and I’m Meryl Comer, several thousand of our nation's top researchers sent an SOS in an open letter that the nation's scientific enterprise is being decimated by what they call the Trump administration's wholesale assault on US. Science threatening America's position as a global research leader, as well as the health and safety of its citizens. Groundbreaking projects at the NIH, the world's largest funder of biomedical research are in jeopardy with massive budget cuts and workforce layoffs that also persist across the FDA and CD. C supporters have rallied in 32 cities and globally to protest and protect independent scientific inquiry. So how is the Alzheimer's advocacy community responding with a top line call to action is George Vradenburg, founder and chair of UsAgainstAlzheimer's.

George Vradenburg (01:30):

We have organized a coalition of patient advocacy organizations from Alzheimer's cancer, heart diabetes, rare Disease in order to provide a patient voice in the current fights about maintaining the integrity, honesty, and high performance of our biomedical and scientific system. So we are in this fight now to maintain at least a semblance of reasonableness as we approach this downsizing of our government so that in fact we will end up in a year or two years or whenever this downsizing is finished with a functioning NIHA functioning FDA and A functioning CDC. So that in fact this scientific establishment in both universities and at NIH can actually stimulate the cures of the diseases we care so much about. And it's an alliance of all of us. It's a patient voice. It's powerful. Indeed. One of our board members, Greg O'Brien, went to the Lincoln Memorial, introduced by the former director of the NIH Francis Collins and spoke to the patient, patient view about the importance of the scientific and biomedical establishment to cure his disease. This is the place that Martin Luther King spoke steps of the Lincoln Memorial. This is the place that there was a march on Washington against inequality and poverty. This is the place where major events occur and us against Alzheimer's Board member Greg O'Brien spoke eloquently and powerfully about the importance of the patient voice. We're the patient voice, we're organizing other patient voices to speak up at this important time.

Meryl Comer (02:57):

Thank you, George. Our guest today is journalist author Greg O'Brien. Diagnosed more than a decade ago with early onset Alzheimer's. After a series of serious head traumas, Greg said to work to unmask and track his personal journey and the disease progression in the award-winning book on Pluto. Along with several award-winning documentaries, the latest on PBS. Have you heard about Greg? Greg, thank you so much for joining us today. Tell us why you were so determined to make it to the rally in Washington DC

Greg O’Brien (03:34):

Thank you, Meryl. Anyone on this journey would know. It took a lot out of me. My feeling is I want to do this to get support from other people for more research. I lost my maternal grandfather, my mother, my father and paternal uncle to Alzheimer's. And now the disease has come from me. And my sense in talking with a lot of Alzheimer's experts that when they do get around to a cure, it'll be more for people in an early stage and later a little bit talk about my symptoms. So it's probably not going to do much for me, but on my way out, I want to do much for others and gives me a purpose, if that makes sense to you.

Meryl Comer (04:15):

All right, Greg, what's your secret? How do you get in the zone?

Greg O’Brien (04:19):

I have a strong faith in God and I've learned over time, and some people would understand this to get in the zone and you can't at times be in the zone in Alzheimer's. It's like athletes, basketball players, musicians, writers. It's that place where your soul or whatever you want to call it takes over. And I've had to train. I think it's a gift from God. Meryl, there are times that I'm writing in the zone and I wrote this speech in the zone and I'm hitting away at keys on my keyboard and then I look up at the screen and I've said, where did that come from? I'm not that good. And I don't know if that helps explain it. Greg.

Meryl Comer (05:06):

Travel has become a hassle for all of us. How do you manage travel at this late stage in the disease?

Greg O’Brien (05:13):

My wife usually travels with me and she's Mary Catherine. She's gorgeous and she deals with a lot and she sees the stuff that you guys don't see really at some point you see me in the zone, but I can't be in the zone 24 7 and I'm not good at airports as a good example. And I'm very confused and dropping a lot of F bombs. My brain can't focus. It starts going crazy. I don't know if this is for everyone, but I know from research I've done, at least with me, the brain when there's a lot of noise, can't compute that it also elevates the noise because someone could be talking normal, but my brain will raise that volume.

Meryl Comer (06:05):

You made it down to Washington dc you were made it the other side by Susan Quirk, a co-producer of brainstorm. And tell me why her presence was important to you.

Greg O’Brien (06:19):

She was like a mother to me and I felt calm around her and I think she could tell that I really needed her if she was going someplace. I was wondering, where are you going? And, and I didn't want to do that, but I wasn't able and comfortable just being alone. They put me in an office and that's good. And she'll know that I would go by and look at the office next to me. And she may know that there were several times I just walked by to make sure she was there. And then I felt okay. So sent her a nice email. Nice. She was fantastic.

Meryl Comer (06:55):

Greg, I'm going to invite Susan into the conversation. Susan, thanks for joining us. What's your take on the day?

Susan Quirk (07:02):

Well, first of all, Meryl, thank you for including me on this. And Greg is amazing. I have to say that from beginning to end, I know it was quite a hard travel day. His flight was at 6 45 in the morning, landing in DC at eight 20, getting to an office, you know, preparing for his speech. And then we were on the mall, the national mall down at DC on actually a beautiful day. But it was allowed, there was a huge crowd, over 10,000 people all rallying. And in addition there was music and over 20 other speakers and they were amplifying the speeches out. So it was a very loud environment. And watching Greg as he described getting into the zone was just absolutely amazing. I was so honored to be asked to do this with him and I have so much respect for Greg doing this. I know it was not easy and you really just wowed the crowd and really got things going at this rally.

Meryl Comer (08:06):

Greg, I've read your speech several times. It's insightful, eloquent. I don't know how you do it.

Greg O’Brien (08:15):

I've been blessed by understanding how to get in the zone and it's a gift and I do everything I can not to show people the wacko side of Alzheimer's 'cause I want them to listen to me, not feel sorry for me. Does that make sense Meryl?

Meryl Comer (08:32):

Absolutely. It makes sense. Susan, take us through the rally itself.

Susan Quirk (08:38):

He was introduced by Dr. Francis Collins who was a director at the NIH. And he gave an excellent introduction. And at the beginning of it, I'm sure they thought Greg was a scientist or somebody that he had worked with at the NIH. But then when Dr. Collins mentioned that Greg had Alzheimer's, I think after that speech, I think people were amazed. And Greg, I don't know if you remember, but we finished and we had to weave our way through the crowd to get to an Uber to take us back to the airport. And everyone said, great job. That was amazing.

Meryl Comer (09:14):

Well, for those of us who weren't there, Greg, we'd love to hear the speech that you gave on that very important day because you spoke for all of the Alzheimer's advocates in your inimitable fashion. So let's have it. Greg O'Brien.

Greg O’Brien (09:32):

So let me read this. Meryl Ernest Hemingway's brilliant work, a farewell to arms, he wrote quote, the world breaks everyone. And afterwards some are strong in the broken places. And so I pray for all of you today to be strong in the broken places. And that's why we're all here today with drastic cuts on the table for critical medical research for Alzheimer's and cancer and other horrific diseases, innocent lives will be lost. That's just a fact if you would argue against the need to cut government waste. But the need must be thoughtful, not a meat cleaver approach that we have before us today. For the record, I'm a career journalist politically in the middle. I have no party affiliation other than advocating for as long as I can for what I believe are the right things. And so my comments today are not about shoveling ashes on the White House, that can be for others and it's deserve.

Greg O’Brien (10:32):

My focus is building a strong constituency for unilateral support and medical research for mans upon mans of those suffering. Today I am deeply concerned about the future. It's simple math. I learned at a young age the Sisters of Charity in an Irish Catholic school outside Manhattan. That one plus one is two, but if you subtract two, you have zero. And that's not right yet. I fear that's where we're headed. It shouldn't be that way, it just shouldn't. Good research and science are not dirty words. I lost my maternal grandfather, my mother paternal uncle before my father's death. He too died of dementia. One of 10 kids. I was both at my parents' death beds on Cape Cod, the family caregiver. That image burns inside me several years, Alzheimer's came for me. I also have prostate cancer, an ongoing breakdown of my body. Even brain signals are not connecting.

Greg O’Brien (11:36):

I deal with serious internal hemorrhaging at times and a degree of numbness from my neck to my feet. I feel like Gumby Alzheimer's with some can be a 20 year journey. The experts say it's like having a sliver of your brain shaved every day. That's why, why we need more research to slay the demons of this disease. Today I have little short-term memory. A close friend of mine calls it CRS, translated in Gaelic, can't remember ship. Thus, my MacBook Pro laptop is my best friend. I write in the moment, everything down before it vanishes. As with others on this serpentine journey, I deal with disconnections every day with hallucinations, deep depression, all out confusion, a loss of self and place. It's not pleasant. And there was twice that I contemplated and tried to take my life and I'm not proud of that. Again, we need more research.

Greg O’Brien (12:36):

But I keep moving forward, not retreating while I can. And I write to encourage others in my faith, I say God is good and carries me footprints in the sand. I'm a wholly imperfect person. And see my relationship with the Lord as a combination of the agonizing lurch and the Adams family who go, you know, all that time. And Telly Sevalas, the lollipop Kojak, who loves your baby. The point of all this is that without adequate funding for medical research and strong commitment to this, we lose our soul as a nation. I would like to believe that Republicans and Democrats alike would not want to go there. This is not a liberal or conservative cause. It's a fight for life issue. And so on my journey, I've turned to the iconic film Animal House and to the late John Belushi, the Bluto Blutarsky in his epic speech, rallying, defeated, fraternity brothers facing school expulsion over.

Greg O’Brien (13:38):

Did you say, over Bluto goes to them. Nothing is over until we say it is. And so folks, it's not over. Keep rallying, keep the faith. Be strong in the broken places. God bless you. Well, I need people like you 'cause I won't remember that <laugh> can't remember. You have to. And if anyone is listening and another side of it, I don't know how one gets through this without faith. And faith comes in different formulas and I, I understand that, but you have to have a sense of humor. It's a coin of life. You have to be able to make fun of yourself so you relax others. So they might listen to you. This disease can go 20 years and it's disturbing to me, me knowing how long it can take me all. There are exceptions to everything and I get that. But there are people who have said, well, my mother or my father was diagnosed with Alzheimer's and died 10 years later.

Greg O’Brien (14:39):

And the answer to that is, first of all, they could have been an exception, but more than likely they suffered for 10 years or 15 years privately. 'cause They didn't want to tell anyone and they were afraid. And what helped push me on was not only faith, but as a journalist, I felt I need to tell the story. Need to tell people what this is like to give them some hope that it's not over until we say it's over. The neurologist said, Greg, this is one of the clearest cases of Alzheimer's I've ever seen. And he said, I want you to take it seriously and I want you to fight. And I remember reaching for my wife's hand and the first thing I said, what about the kids? Because this disease is about the kids. People like me. At some point we won't be around, but it's about the kids.

Greg O’Brien (15:33):

It's anyone who's listening. Your kids, your grandkids. I don't want kids. And my grandkids and my kids have a 50% chance maybe of getting this. I don't want to see that. And so with all of my strength and faith, if I can fight for people to take this seriously and to fight for a cure, despite the fact that I have, this may surprise you, I have very low self-esteem. But when I talk, I'm in that zone and that lifts me to a higher place. And I'm fighting for the next generation. I'm fighting for my kids, my grandkids, your kids and your grandkids.

Meryl Comer (16:11):

We're fighting together for the same reason. Greg, both of you. And I know how painful it is when a family member you're caring for doesn't remember who you are. Now, I once asked you, how you still remember my name? Is it something I've said or is it how I make you feel?

Greg O’Brien (16:30):

I remember the people I care about. I know I only have so much ability to do that. Other people, to be honest with you, every day, people I've known all my life, it's hard for me to be in a room with other people. But I'll see people that I've known a good part of my life. I don't know who they are and what I do. 'cause I don't want their pity is I'll go around and I'll shake a hand and shake a hand. And then I look for a door that I can get out. And I'll go sit for myself for about an hour and a half. And then people say, I saw Greg, he looks good, blah, blah. You know? And people, they'll say, oh, you look good and blah, blah, blah. And I said, look, your looks have nothing to do with this disease and people don't get it.

Meryl Comer (17:15):

Greg, let's have some fun. I'm going to give you some people's names and I want you to tell me how they make you feel. Alright? Okay. George Vradenburg, whom we heard from at the top of the show about the importance of advocacy.

Greg O’Brien (17:29):

George is an incredible man and he has helped me more on this journey just like you than any of you realize, by encouraging me and I I love George. Greg,

Meryl Comer (17:40):

How about neurologist and author, Lisa Genova, who's been important in your journey and with whom you worked on a documentary for PBS?

Greg O’Brien (17:49):

Lisa Genova is a very good friend. Have you heard about Greg? A couple months ago it won Los Angeles Press Club Emmy Award for best medical documentary.

Meryl Comer (18:00):

How about Dr. Rudy Tanzi from Harvard?

Greg O’Brien (18:03):

Oh God. Rudy's a brother. I call him Batman. And you know who he calls me, Robin. We have fun. It relaxes me when people joke around me and Rudy does that.

Meryl Comer (18:18):

So Greg, did you know that with humor, you're supposed to be able to live longer?

Greg O’Brien (18:22):

I'll leave you with something funny. 'cause I was nervous when I was given my speech and people were applauding, but it kind of threw me off my pace. And then I just said in the microphone, I said, you know, I wish my mom could hear this. And then I said, I forgot. She died of Alzheimer's and the place went crazy.

Meryl Comer (18:40):

Greg, her wish for you is to stay. Well, keep advocating, keep writing. It's a God-given talent. You have to break through the stigma and silence of Alzheimer's by sharing your journey. Thanks so much. That's it for this edition. I'm Meryl Comer. Thank you for brainstorming with us.

Closing (19:00):

Support for BrainStorm by UsAgainstAlzheimer's comes from Genentech. Genentech is prepared to ask tough questions to help tackle the root causes of systemic inequities in healthcare. Subscribe to brainstorm through your favorite podcast platform and join us for new episodes on the first and third Tuesday of every month.