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Greg O'Brien      

Award-Winning Journalist & Author of "On Pluto: Inside the Mind of Alzheimer's"

Greg O’Brien was diagnosed with younger-onset Alzheimer’s disease in 2009 at age 59.

O'Brien has more than 35 years of experience as a writer, editor, investigative reporter, and publisher. His work has appeared in the Boston Herald, Arizona Republic, Associated Press, Denver Post, Huffington Post, Psychology Today, Readers Digest, USA Today, and Boston Magazine, where he was a senior writer. O'Brien is the editor/author of several books including “On Pluto: Inside the Mind of Alzheimer’s.”

Prior to his diagnosis, O'Brien experienced difficulty recalling the names of friends and family members, confusion while driving and increasing anxiety. Gradually, the symptoms began to impact his professional life, and he compensated by relying on electronic devices, programmed reminders, and other organizational tools.

O'Brien’s mother, father, paternal uncle and maternal grandfather all died with symptoms of Alzheimer’s disease. During the last years of his mother’s life, O'Brien was her caregiver and became very familiar with the devastating symptoms of the disease. Denial prevented him from pursuing his own diagnosis at first. However, as his symptoms worsened, he consulted his primary care physician, who referred him to a neurologist.

After completing a battery of tests including MRI and SPECT scans, Greg and his wife, Mary Catherine, met with a neurologist to receive the diagnosis. Genetic testing confirmed that he carries the APOE-e4 gene, which increases the risk of developing Alzheimer’s disease.

O'Brien responded to the diagnosis from the perspective of an investigative journalist. Overcome by emotions, he tried to focus on the facts. However, his thoughts quickly turned to the future and the impact of the disease on his wife and children.

At the advice of the neurologist, Greg and Mary Catherine began considering plans for the future, which led to meetings with an estate attorney and the establishment of powers of attorney for health care and property. He shared the diagnosis with his children, whose reactions ranged from anger to fear, and eventually humor.

O'Brien has spoken across the country about his experience living with Alzheimer’s disease, and at events including the Alzheimer’s Association’s Massachusetts/New Hampshire Chapter, which is in his community.

He has been featured in the documentary film, Living with Alzheimer’s: A Place Called Pluto, and on NBC News and NPR. He has also contributed a regular column to the Huffington Post and Psychology Today.

Greg would like to raise awareness of the experience of people with younger-onset Alzheimer’s and advocate for increased funding for research. Using his skills as a writer, he states, “I want to help teach the world how to live and speak through the heart as the brain diminishes.”

Speech Topics

The Irish Don’t Get Mad, They Get Even – An Epic Fight to ‘Get Even’ with Alzheimer’s

Today I’m getting even with Alzheimer’s—not for me, but for you, your families, and for all those who will face this demon prowling like Abaddon. Braced with the stinging diagnosis, I chose muscle memory over pity and shaking my fist at God. Instinctively, I began taking notes, more than a thousand pages of them, detailing memories, the progression of my mother’s disease, and my own walk. As a journalist for more than three decades, my gut, my muscle memory, guided me in writing On Pluto: Inside the Mind of Alzheimer’s, the story of an investigative reporter imbedded in the mind of the disease, chronicling while he can the progression of this monster, a book about living with Alzheimer’s, not dying with it. The death part comes later.

All the darkness in the world, my mother taught me, cannot snuff out a single candle. I know the darkness. It’s a place I call Pluto, in allegorical terms, a reference from my early day as an investigative reporter at the Arizona Republic when I went deep “off-the-record” with sources. “We’re heading out to Pluto,” I would say, “where no one can see you or can hear what is said...”

The Longest Day

As a child, I started counting daylight minutes beginning with the winter solstice. Today, at age 64, I stand still in the sun on the longest day, but for a different reason. The longest day has new meaning for me as I battle Alzheimer’s disease. For those afflicted, and for their caregivers, each day brings new trials from sunrise to sunset; every day is the Longest Day.

For me, the mornings are always the same. In disarray at first light, I must refocus on the five Ws: the Who, What, Where, When, and Why of life, as if rebooting my faithful MacBook Pro before tossing the covers and organizing the scattered files of my mind. I do this out of instinct, but there’s always the depression, fear, and angst to walk through—and that’s just on the way to the bathroom where, on doctors’ advice, I’ve begun labeling the toiletries as I have attempted to brush my teeth with liquid soap, and gargled briefly with rubbing alcohol.

Doctors tell me I’m working off a “cognitive reserve,” a backup tank of inherited intellect that will carry me in cycles for years to come. They tell me to slow down, conserve the tank. It’s lights out, they warn, when the tank goes dry. In laymen’s terms, the “right side” of my brain—the creative, sweet spot—is intact, for the most part, although the writing and communication process now takes exponentially longer. The left side, the area of the brain reserved for executive functions, judgment, balance, continence, short-term memory, financial analysis, and recognition of friends and colleagues, is at times, in a free fall as I brace for a crash landing…

What Do We Tell The Kids?

My voice splintered. When you’re married to someone for close to four decades—when you’ve been through all the “for better and for worse” throes of marriage, when you have a partner who knows you almost as well as you know yourself, when you’ve been in love, fallen out of love, fallen back into love, and drifted, then at a time like this, little needs to be said. We both knew what the future held. No one had to sky write. We were all about the kids. Mary Catherine grabbed my hand, we nodded, and then listened to the doctor. The moment is embedded in my mind in a freeze frame…

The Cycle of Life and Love: The Long Kiss Goodbye (Good for Valentine’s Day)

There is a cycle to everything in life: The sun rises, it sets, then rises again. So it is often with love and marriage, as we keep our eyes peeled to the horizon in anticipation. Years ago, Cupid shot an arrow at me, and I married the beautiful, younger sister of my University of Arizona roommates—Tom and Lou McGeorge. From Cupid’s quiver it was the path to love, and the perfect Irish payback to my buddies—marry their sister!

Stephen King couldn’t have devised a better plot.

The early years were blissful. Then I took another arrow; this one to the head—a disease called Alzheimer’s, one that stole my maternal grandfather, my mother, and my paternal uncle who also died of the disease. And now it’s come for me. Alzheimer’s runs in my family, practically gallops. At 59—after suffering a range of horrifying symptoms, and after a serious head drama that doctors in Boston said unmasked a disease in the making, after a brain scan, SPECT scan and a range of clinical tests, I was diagnosed with Early Onset Alzheimer’s. I also carry the Alzheimer’s marker gene: APOE 4.

Hey, I’m not stupid; I just have a disease, seeking to sustain an intellect that was once my prized possession. Today I’ve learned to write and think from the heart, to love from the heart. Love sustains even in Alzheimer’s, a disease akin to having a sliver of your brain shaved every day, the long kiss goodbye. Love of God, love of my wife Mary Catherine, love of my children, they all sustain. We are urged in the scriptures to cling to what is good, that love never fails in the journey from the mind to the heart, a trek I’ve now embarked upon, and a journey you might take one day. Hey, anyone here who doesn’t think they will die someday, please raise your right hand. Enough said…

Living Not Dying with Alzheimer’s: My Brain Used to Be My Friend

My brain used to be my best friend, but today I see no chance for reconciliation. And so I’ve learned to write and speak from the heart, the place of the soul. Today I am here to encourage you on your journey.

These days, many are latching on to hopeful, simple cures for Alzheimer’s; we’ve become distracted with the quick fix. We all like to live in denial. As Mark Twain once wrote, “Denial ain’t just a river in Egypt.”

Finding a cure for Alzheimer’s and the development of innovative pharmaceuticals is much like the game of Mouse Trap, the 1980 video arcade in which a player uses a four-position joystick to maneuver a mouse throughout a maze and eat pieces of cheese scattered along the paths. One at a time, six cats are released into the maze to begin chasing the player. The maze has three sets of color-coded doors, which the player can open or close by pressing the corresponding buttons in order to block the cats’ approach…

This Is Not Your Grandfather’s Disease

Alzheimer’s, named for Dr. Aloysius “Alois” Alzheimer, who in 1906 first identified amyloid plaques and neurofibrillary tangles that rob the brain of identity, is the most common form of dementia—an umbrella term for irreversible cognitive collapse. Alzheimer’s progresses slowly in stages, slaying neurons in the brain. The early stage is marked with increasing impairment of learning and short-term memory with some language challenges.

The moderate stage is a progressive deterioration that leads to incapacity to perform certain common daily functions: short-term memory worsens, filter is lost, rage is intense, inability at times to recognize familiar places and people; some urinary and bowel incontinence; and at times, “illusionary misidentifications,” which the layman, less politely, would term hallucinations.

I’ve entered the moderate stage, doctors say, but there is plenty of baseball left to play. The advanced stage—the stereotypical perception of Alzheimer’s—is characterized by wandering and a complete shutdown of cognitive and body functions. Collectively, this slow demise can take up to 20 years or more once it’s been diagnosed, and can begin 10 or 15 years before diagnosis. With some, the progression, for reasons unknown, is far quicker. This is not your grandfather’s disease; it is, in fact, fast becoming a disease of the young or young at heart…

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A Journalist Takes On Alzheimer’s

The wind has shifted on Cape Cod. A rusted iron cod on the weathervane at the gable end of the barn is pointing southwest, a warning of foul weather fast approaching from the nor’east. The weathered New England cedar shingles at a precise 9-inch pitch are wet with a fine mist. Near a side door, framed by lobster buoys washed up on the shoreline, a simple white dory window box is filled with colorful perennials. The barn has the feel of a dune shack, a writer’s retreat at the end of a barrier beach—all of it natural, a reflection of the man and his memories snug within.

The door is open, revealing a time capsule of newspaper and magazine clippings, shelves of books, photos of the renowned, the infamous, and other memorabilia. I am innately connected to this man within and to his memories…

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