Synopsis: One year ago, we visited Greg O’Brien, a journalist attempting to document his own decline into early onset Alzheimer’s disease. Now he discusses the past year and the difficulties he’s meeting as his disease progresses.
Host: Lynn Holley. Guest: Greg O’Brien, author, On Pluto: Inside the Mind of Alzheimer’s
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One More Year Inside Alzheimer’s
Lynn Holley: About a year ago, we told you the story of Greg O’Brien, a former newspaper reporter diagnosed with early onset Alzheimer’s disease in 2009, before he was even 60 years old. He documents his own decline in his book, On Pluto: Inside The Mind Of Alzheimer’s, and he’s always planned on telling his story as long as he can. So O’Brien was happy to catch up with us and tell us what one more year inside Alzheimer’s has been like.
Greg O’Brien: In Alzheimer’s you have to try to find the new me, and that can be bewildering at times. My short-term memory still is evaporating; sixty percent of what I take in I can forget in 30 seconds. In Alzheimer’s, it attacks the mind, but then the body breaks down. I’ve had more trouble with my balance now and tripping a lot; no feeling in parts of my feet and my hands and my spine now is breaking down. I have acute spinal stenosis and scoliosis and I got cancer so other than that things are going great.
Holley: He says his doctors agree that a lot of other people probably wouldn’t be doing as well as O’Brien is.
O’Brien: They’re thinking that I’m really fighting this thing and they’re encouraging me to keep fighting. They know that the clock is ticking because they’re seeing other symptoms creep in. They’ve always said that I’m working off a cognitive reserve. I’m protecting my communication in my writing, which, I believe, if your blessed with the ability to discern more, that you’re able to do that, but there other things that are falling by the wayside. I’m losing all my sense of smell and taste; my judgment is getting worse and worse. Every day when you get up you’re wondering what’s the next shoe to fall?
Holley: O’Brien says some days are worse than others. On those days, he says his memory is like being in the basement at night when somebody turns out the light, not realizing someone’s down there.
O’Brien: You scream. You yell. You try to make enough noise so someone upstairs turns the light back on. It’s a scary moment. That’s what early onset of Alzheimers is — you’re trying to restart, reboot your brain. And then the light goes off again and it goes on and you never know when it’s going to go off again. You’re always kind of living on the edge in that. But you do know that someday it’s going to go off and there isn’t going to be anyone up in the kitchen to turn the light back on.
Holley: O’Brien has developed strategies to keep the light on as long as possible. Most of them come from his training as a reporter. He writes everything down.
O’Brien: And everywhere I go you’ll hardly ever see me without my laptop or my iPhone. I will email myself 20, 30, 40 times a day with reminders, and then at the end of the day when I forgot that I emailed myself, I get upset because I got 40 emails and go, oh my god, and then I realize they’re from me.
Holley: But in spite of those efforts, O’Brien is losing parts of his life piece by piece. He often doesn’t recognize longtime friends. When that happens, he acts like a reporter.
O’Brien: And this happens to me all the time now, I just don’t recognize people. You go, “Hey Greg, how you doing?” and you’re very friendly. So, rather than create an awkward moment, I’ll talk to you like I know you and I’ll keep asking questions until maybe I get some information from you that triggers the long-term memory. I’ll ask about your family, your job, just like I’m a reporter. You might tell me something. If not, I try to say, “Hey, you take care. I hope all is well,” and we’d part. But I’ve had buddies of mine who are with me who know what’s going on and after an encounter like that they say, “You didn’t have a freaking clue who that person was,” and I said, “No, you’re right. I didn’t.”
Holley: Driving has also become risky, and O’Brien knows someday he’ll completely lose that privilege. Last December, he crashed his car, probably because of his disease.
O’Brien: I saw a deer or my mind told me that I saw a deer. Twenty years ago a deer ran across one of the roads here and took out the front of my car. So, I see this deer darting across and I turn the car, my yellow, four-door Jeep really sharp, I hit a stone wall in the church parking lot. The car went airborne; it crashed in the parking lot, rolled twice, ripped the top of the roof off and my head hit the windshield with such an impact that the wound had to be closed with surgical staples after an ambulance ride. So, after it the doctors and myself weren’t quite sure, “Did you see a deer or did your mind tell you it was a deer?” Because there are times when I see things that aren’t there. But the doctors told me I can’t drive after dark now.
Holley: But what O’Brien says may hurt most is having to put his beloved Cape Cod home up for sale.
O’Brien: I know I need to do it, but the day I walk away, there’s a piece of me that’s cut out. Alzheimer’s is a death by a thousand cuts. It strips you of your identity and this house is a big part of my identity. I know people look at homes differently and I appreciate that, but this house is who I am. I had it built specially for that purpose and now I got to walk away at some point soon.
Holley: O’Brien also wonders when he’ll give up and walk away from life itself. He watched his mother struggle with Alzheimer’s, and saw that she hung on to her mind for a long time through sheer force of will. Finally, she asked Greg to take over.
O’Brien: And I realized she was saying goodbye. It’s like a curtain had been pulled down over her eyes and watching someone who had been holding onto a dock in an outgoing tide just let go and drifted out.
Holley: O’Brien knows that will happen to him someday. He admits he has to push himself hard to keep moving forward. But he can’t do it forever… And the day he gives up is no longer completely out of sight.
O’Brien: How many more years can I be in overdrive? I’m not stupid. I just have a disease. I can’t, nor do I want to go at this pace. I will come to the day like my mother, and I don’t know if you remember that boxer who said, “No mas.” I’m going to say, “Okay, you win. I’m giving up.” I have said to my wife and others who are close to me, I can’t wait to get out of this body. I’m kind of getting tired of fighting. One of my worse fears, because of who I am, is, as I communicate and as I write, the day I put my fingers on the keyboard and I don’t know what to do is the day I want to go home.
Holley: You can find out more about Greg O’Brien and his book at onpluto.org, or through a link on our website, radiohealthjournal.net. You can also find archives of our programs there… As well as on iTunes and Stitcher. Our production directors are Sean Waldron and Nick Hofstra. I’m Lynn Holley.