The National Alzheimer’s Early Stage Advisory Group [Interview][Transcript]

Greg_OBrien_early_onset_AlzheimersGuest: 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, talks about his work with the National Alzheimer’s Early Stage Advisory Group where his position allows him speak on the national stage.

Transcription
Health Professional Radio – National Alzheimer’s Early Stage Advisory Group

Neal Howard: Welcome to Health Professional Radio today. I’m your host Neal Howard, very glad that you could join us. Our guess in studio is Mr. Greg O’Brien. Now Greg has more than 35 years of experience as a Writer, Editor, Investigative Reporter and a Publisher. His work has appeared in The Boston Herald, Boston Magazine, Arizona Republic, The Associated Press, Huffington Post and many, many other publications. In addition he’s authored or been a contributing Editor to several books including his latest work, On Pluto: Inside the Mind of Alzheimer’s. Greg is here today to talk with us about his recent appointment to the National Alzheimer’s Early Stage Advisory Group as someone living with Alzheimer’s. Welcome to Health Professional Radio Greg.

Greg O’Brien: It’s an honor to be here. Thank you very much.

N: Now you are living with Alzheimer’s. Normally many of us speak with someone who’s an Authority on the disease or someone who’s written a book on the disease or maybe even a caregiver. It’s a rare experience to speak with someone who’s living with Alzheimer’s on a day to day basis and still functioning as successfully as you are. You’ve just been appointed to The National Alzheimer’s Early Stage Advisory Group, now this group specifically designed to address issues associated with early stage Alzheimer’s. Talk about your diagnosis.

G: Well first of all what I want to say is I’ve been on The National Alzheimer’s Association Early Onset Advisory Group for several months and I served with an incredible group of individuals from around the country with the disease and they can all speak, they can all function and that gets back at the stereotype of the disease which is not accurate that you’re 85 years old, you’re living in a nursing home and you’re gonna die soon. This is a disease that can strike young, can strike in the 50s, 60s, sometimes earlier. It takes 20 to 25 years to run its course, so these individuals on this Board, I’m honored to serve with them. They were examples of the many of people in this country who are out fighting against this disease. Many of whom are intimidated to speak out because the word dementia, is sounds like a demon howling in the desert. People are afraid losing their jobs, people are afraid of the stigma and what is this Board is doing and what I try to do with my book, On Pluto: Inside the Mind of Alzheimer’s is to enable people to step out and to speak about it and that we’re not alone and that there’re a lot of creative important things that we can still do, sure we have limitations and they’re gonna get worse and worse but it is what it is, so.

N: Now being as young as you are and having been diagnosed with early stage Alzheimer’s, what types of misdiagnoses did you have to endure because obviously that was the last thing you were expecting or did you suspect it?

G: Well that’s a very good question. I’ve fully suspected it because my maternal grandfather, my mother died of Alzheimer’s, my paternal uncle died of Alzheimer’s, before my father died he was diagnosed with dementia and so it’s in the family tree and when I started years ago, I’m 66 right now but when I started years ago having these symptoms I recognized them as symptoms in my family members and then I had serious head injury and actually a second one that doctor said unmasked a disease in the making. So it was no surprise to me and I knew exactly what it was but I was diagnosed with Alzheimer’s two weeks after being diagnosed with prostate cancer.

N: Oh my goodness.

G: And I’m not treating the prostate cancer, it’s my exit strategy it’s a slow mover but there is no cure for Alzheimer’s right now. You can’t remove a brain and I don’t want to take my family to that final dark place.

N: You’ve decided not to treat your cancer, as you say it’s an exit strategy. Is there any part of the decision that’s based on the rigorous, the rigorous treatment to treat prostate cancer or is it simply, explain that. It seems.

G: It’s an exit strategy. I don’t wanna take my family to the nursing home. They’re wonderful, wonderful places but I’ve seen what happened to my grandfather and my mother and we’ve made extraordinary improvements in care and research but we’re not there yet and though we’re there I don’t want to take my family to that place of total devastation and so you look for things to take you out. And so I have prostate cancer five places on my prostate and haven’t been to the doctor in two years since then so I have no idea where it is now.

N: Have you been dealing with any symptoms of that diagnosis and if so how does it compound any of the struggles on a day to day basis that you have with Alzheimer’s?

G: Well again because first of all the symptoms of Alzheimer’s is I believe having experienced both so much more horrific that it’s incomparable but with a prostate cancer you got to go the bathroom a lot, it is what it is. I don’t feel any pain from it but you know it’s there.

N: Now The Early Stage Advisory Group, it’s role is multi-faceted. I know, I understand to raise awareness about early stage issues of Alzheimer’s. Also to be an Advocate, increasing funding for research and support programs. What is normally what you do in…

G: So I through The Alzheimer’s Association, also I’m a patient advocate with The Cure Alzheimer’s Fund of Boston and Us Against Alzheimer’s in Washington D.C. both of which are extraordinary organizations and people. You should Google them if they want more information but The Alzheimer’s Association has been so helpful to me. I traveled the country speaking on their behalf at conferences and various events and I’ve been gifted. I have a strong faith in God, writing and communication is a gift and that is still with me and I do a lot of writing nationally on this issue on behalf of The Alzheimer’s Association.

N: Are there ever times when a family members need to assist you or accompany you when you’re participating in the activities of the group or is the group pretty much self-sustaining when those activities are going on?

G: No. Most of us can’t travel alone and I can’t travel alone and when we have these events we’re usually with other people. My son Conner is the one who’s my go-to person and he travels with me. We have an extraordinary relationship and you can’t do it alone and he sees a lot of the train wrecks and God bless him it’s been a mixed blessing for but so we go to these events, there’s always a family member there.

N: And in wrapping up let’s talk about some of the professions that are represented in The Early Stage Advisory Group. You’re a Writer, an Author, an Investigative Reporter, what about pilot physicians? Counselors?

G: Yeah. You have all that, I mean they, every year they appoint, add new members of the group and then people who are in the group before they become extended members and members at large. But over the time you have lawyers and you have former CEOs and you have medical individuals and it covers all areas of life and that’s why it’s such a strong, strong group and you go online, The Alzheimer’s Association and find out more about it as you can with To Cure Alzheimer’s Fund in Boston and Us Against Alzheimer’s in Washington D.C. but The Alzheimer’s Association Early Advisory Group is very professional, very eclectic and they’re doing extraordinary things in lifting the stereotype that Alzheimer’s is just a disease of those who are in the waiting room to die because that’s just not true, that’s the end stage.

N: And you’re absolutely living proof of that fact. It’s been great having you here with us today Greg.

G: Well this is an honor and anytime you want to call me, I’m available to you.

N: Thank you. 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. You’ve been listening to Health Professional Radio.