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Alzheimer's Notes

Greg O’Brien is a brave man. And he’s a terrified man.

Greg has Alzheimer’s disease. To be specific, he has early-onset Mendelian Alzheimer’s: He was diagnosed with dementia at age 59. Now 66, he’s one of 5.4 million Americans and 44 million people worldwide with the disease. His mother died of Alzheimer’s. His father had it too, but cancer took him first. In fact, he’s the third generation of his family with the disease.

Greg is not willing simply to die from Alzheimer’s. He’s fighting it by writing about it.

An award-winning, nationally recognized journalist, he published a memoir in 2014, On Pluto: Inside the Mind of Alzheimer’s, detailing his daily battle with the disease. I just finished reading the book — and then interviewing Greg — for a forthcoming Experience Life article on the latest advances in the war on Alzheimer’s.

“There’s only so many things I can do now, but the one thing I’m going to do until I can’t any-more is be a reporter,” Greg tells me. He calls himself “an embedded reporter inside the mind of Alzheimer’s,” and he’s chronicling how dementia is effecting his life and that of his family as a way of raising public awareness of the disease. Later this year, he’ll release an updated edition of the book.

On Pluto is not a pity party or misery memoir by any stretch of the imagination. Greg tells his own story as a means of providing others with “a blueprint of how to fight” the disease, including the heartbreaking moment when he and his wife had to tell their two sons and daughter about his encroaching dementia; signing over his financial authority to his family and organizing his affairs; and more.

He also talks frankly about his daily coping strategies: He sends himself constant email reminders of everyday tasks on his smartphone — sometimes up to 50 emails a day. He labels his mouthwash to differentiate it from a bottle of isopropyl alcohol so he doesn’t mistake the two as he did one recent morning. He runs three miles daily in an effort to keep his mind charged with the powers of exercise. And he surrounds himself with photos of his family, his mother who died from Alzheimer’s, framed clippings of the favorite articles he’s written — all in an attempt to refresh and retain those memories in his mind.

As a writer, though, Greg still has immense power. His descriptions of the disease’s effects are harrowing. And his analogy of Alzheimer’s as a journey off to Pluto encapsulates dementia as I’ve never thought of it before.

“By documenting Alzheimer’s, I’m getting even with it,” Greg says to me. “It’s my way of living with Alzheimer’s, not dying from it.”

That is bravery.

You can purchase On Pluto (which includes a foreword by Lisa Genova, author of Still Alice) directly from Greg O’Brien or through bookstores everywhere.

Image credit: From the film, A Place Called Pluto, directed by Steve James from David Shenk on Vimeo.

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