Inside the Mind of Alzheimer’s [Interview][Transcript]

Greg_OBrien_Alzheimers_diseaseGuest: Greg O’Brien
Presenter: Neal Howard
Guest Bio: Greg O’Brien was diagnosed with younger-onset Alzheimer’s disease in 2009 at age 59. Greg has more than 35 years of experience as a writer, editor, investigative reporter and publisher. Greg is the editor/author of several books including “On Pluto: Inside the Mind of Alzheimer’s.” He has been featured in the documentary film, “Living with Alzheimer’s: A Place Called Pluto,” and is currently contributing a regular column to the Huffington Post and Psychology Today.

Segment overview: Greg O’Brien, an award winning investigative reporter, who was diagnosed in 2009 with early onset Alzheimer’s, discusses his book, “On Pluto: Inside the Mind of Alzheimer’s”.

Transcription
Health Professional Radio – Inside the Mind of Alzheimer’s

Neal Howard: Welcome to Health Professional Radio, so glad that you can join us today. I’m your host Neal Howard and it’s a pleasure to welcome into the studio Mr. Greg O’Brien. Greg’s got more than 35 years of experience as a Writer, Editor, Investigative Reporter and Publisher with work having appeared in the Boston Herald, Boston Magazine, Arizona Republic, The Associated Press, Denver Post, Huffington Post and many, many others. In addition he’s the Editor or author of several books including his latest work, ‘On Pluto: Inside the Mind of Alzheimer’s.’ Greg is in studio with us today to discuss Alzheimer’s disease from the perspective of the patient being an Alzheimer’s patient himself. How are you doing this afternoon Greg?

Greg O’Brien: I’m doing okay. Thanks, I’m so honored to be on your show.

N: Thank you so much for joining us today. I rarely get to interview someone who is living with Alzheimer’s and it’s extremely important that we hear from you today. Let’s talk about Alzheimer’s in general for just a moment, what exactly from your perspective is Alzheimer’s disease?

G: Well when I speak, I use this0 analogy and I ask people “How many people ever lived in a home with a basement?” most people will raise their hand, “And how many people ever lived in a home with a basement and done you’re your laundry down there?” they raise their hand. “How many people have ever lived in a home with a basement, done your laundry downstairs, someone up in the kitchen didn’t realize you were down there and turned the light off?” What do you do? You scream, you probably drop an F-Bomb because you want them to turn the light back on and that’s what the early stage of Alzheimer’s is. The light goes on, the light goes off, the light on, the life goes off, you never know when it’s gonna happen but you do know that someday there’s gonna be no one up in the kitchen to turn the light back on and it goes off forever. And that’s really in layman’s term would what Alzheimer’s is about. It’s about a synapse, the current going from one neuron to the next, missing it’s mark. And in time the brain cells die and you go deeper into the progression but there’s a stereotype of Alzheimer’s which is not true and all the experts would tell you this that you’re 85 years old and you’re gonna die and everyone says that’s too bad but as the great Bugs Bunny said “Don’t take life too seriously because nobody gets out alive.” But Alzheimer’s is a disease that can take 20, 25 years to run its course. It’s like having a sliver up your brain shaved every day and there many of us out there who are living with Alzheimer’s in the early stage, not the end stage and it’s often very difficult becaus we have to work, we have to raise families, we have to deal with the taboo. I lost my mother, I know it’s a long answer but it’s a good background, I lost my maternal grandfather, my mother to Alzheimer’s, my paternal uncle and before my father died he was diagnosed with Alzheimer’s and after I had the clinical test and the brain scans, SPECT scans, which confirmed the diagnosis which the doctor said were exacerbated by two serious head injuries and that’s another subject we’ll talk about. I also carry the Alzheimer’s marker gene APOE-e4.

N: So there is that genetic aspect?

G: Well there is but Alzheimer’s can strike anyone, any age, any gender, any color, anything. Most cases of Alzheimer’s are not through the genes and it’s a progressive disease but until we realize that it’s functioning, I’m sorry, is devastating many of people who are dealing with this disease and have to live on a day to day basis. We’re not gonna take it seriously enough to cure it.

N: When you say taking it seriously enough, there are enough of us who are dealing with this disease in one way or another and if not at least we are aware of this existence. You’ve written this book, many of us only hear about it from the perspective of a care giver, how do you trust what someone is saying when they’re talking about their feelings? How do those around you trust you when you talk about your feelings or some of your symptoms on a day to day basis?

G: Well a lot of times people can see these symptoms, I used to tell people that I thought that my brain years ago is a big garbage pail and I’d throw all sorts of crap in it, good stuff, bad stuffs, trivial stuff that no one needs to know about and in Alzheimer’s your ability to process shrinks, diminishes and so I think of my brain today as a flower pot and I believe, I cut up a frog in high school so that’s about as much as I know about medicine but I believe that and other doctors says so, “You can pick and choose what you put in that flower pot to protect.” And people can look this as like finding new pathways in the brain and the essence as a person anyway, not my soul but as a person, I’m a Writer-Communicator and that’s the last thing that I’m gonna let go but right now 60% of my short-term memory is gone at 30 seconds. I don’t recognize people and familiar places, including my wife ion two occasions, I don’t recognize familiar places, I go onto an incredible rage, my judgement is shut, my filter is shut, I have balance problems, I see things that aren’t there and the times I’ll pick up the phone and in the moment, not all the time, I can’t remember how to dial and I get so angry and throw the phone across the room or I’d pick up my lawn sprinkler everyone’s sprinkling their lawn this time of year and I don’t know, and I’m a lawn guy and I don’t know, I love my lawn and I don’t know what the sprinkler does and I crash it against at an oak tree because I’m pissed or in the winter time when I open the door to our woodstove and my brain tells me it’s okay to push that smoking hot piece of glass back until my hand burns in the second degree burn. That’s stuff a lot of people don’t want to talk about, I’m only talking about it because I’ve seen my family members go through it and shame on me as a Journalist, for not talking about it so I’m…inside the mind of Alzheimer’s. The first book written by an investigative reporter imbedded inside the mind of Alzheimer’s chronicling the progression of his own disease.

N: Talk about the title, ‘On Pluto,’ why specifically Pluto as the planet to be on as an Alzheimer’s patient?

G: Well it’s a place of dense isolation but more of the point, when I was a young man, I was at the Arizona Republic, a Reporter there, I was covering organized crime and the Mafia and all that and I went off record with a lot sources and for some reason because I was fascinated then, I’m 66 so I’m only in my early 20s when I’m there and I was fascinated with the planet Pluto and would tell people “…will know, no one can hear what was said and I’m gonna take you out to the planet Pluto” and over time my buddies will pick up and then when we go out to the places where a lot of times you have an intimate discussion with someone and someone says “You’re taking us out” my buddies would say “Are you taking us out to Pluto?” and I would say “Yeah, where no one can hear what it said” and the urge to just drift out and Alzheimer’s is great because it’s a 24/7 fight and sometimes you just want to let go. And so I had to invent a place that I was comfortable with and so called it Pluto and my mom and dad and uncle and grandfather have been there and I know there’s a day when I won’t be back and when that happens I want people to know where I am, so I called it Pluto. People look up Pluto itself, if anyone’s interested, google it, there are a lot of similarities between Alzheimer’s and the planet Pluto – a place of dense isolation, darkness.

N: You’ve Authored several or edited, been on the editing staff of several books, is your writing as far as books are concerned something that you started after your diagnosis and before that were you strictly into news, investigative reporting? How did that come about and what types of struggles being an Alzheimer’s, someone living with Alzheimer’s and an Author?

G: Well probably 40-45 years in the newspaper business which you explained before, the first book I did was a book with a subset area by King Penguin where two books are guide to nature at Cape Cod, O’Brien’s original guide to Cape Cod and the Islands or An Insider’s Guide to Cape Cod and the Islands and that was probably 25-30 years ago. So writing is my muscle memory but maybe more of the point when first of all I dealing, I was my mother’s care giver when I was in Cape Cod and I was one of ten kids but the only family member here and when I started with symptoms I was in denial, which is a normal thing for that situation but for people in general. There’s a chapter on my book that’s a quote from Mark Twain, “Denial ain’t just a river in Egypt” and we all live in denial and but when I got to the point after my serious head injuries, after experiencing the symptoms and after my diagnosis, I had the pity party. I have a strong faith but have the WTF talk with God and you could figure what that means and then I decided to go to my muscle memory and I wrote down two thousand pages of notes of everything else afraid I would forget and I was chronicling my mother’s progression as well as my own and from that working with three New York Times Best Selling Writers, friends of mine Bill Martin, Anne LeClaire and also most notably Lisa Genova who wrote the book ‘Still Alice’ and is a very close friend, I just had dinner with her last night. I produced ‘On Pluto’ and Lisa wrote the Forward, Lisa Genova wrote the Forward On Pluto that’s how the book was produced.

N: It’s been a pleasure talking with you today. I’d like to invite you back for some more segments and talk much more about living with Alzheimer’s, your book and more about your life in general.

G: Anytime, that’s passing information on which is good.

N: Thank you so much. You’ve been listening to Health Professional Radio, I’m your host Neal Howard. And we’ve been in studio with Mr. Greg O’Brien, diagnosed with younger onset Alzheimer’s disease back in 2009 at the age of 59. He spoke in across the country about his experiences living with Alzheimer’s disease and at events including The Alzheimer’s Association Massachusetts, New Hampshire Chapter which is there in his community. He’s also been featured in the documentary film, Living with Alzheimer’s: A Place Called Pluto and he’s been here with us today discussing his new book On Pluto: Inside the Mind of Alzheimer’s and also some of his day to day struggles and some of his observations as someone living with Alzheimer’s. Transcripts and audio of this program are available at healthprofessionalradio.com.au and also at hpr.fm and you can subscribe to this podcast on iTunes.

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