The Real 'Still Alice' (Except This One Wears Trousers)

04/07/2015 03:27 pm ET | Updated Jun 07, 2015

In 2009, at the age of 59, Greg O'Brien was diagnosed with early-onset Alzheimer's. It wasn't surprising since his family was laced with the disease: his grandfather, his uncle and his mother had all succumbed to this merciless killer. Now it's Greg O'Brien's turn. But he isn't going to go down without a fight.

An investigative reporter by profession, he began taking copious notes about his arduous trek into his mind, riddled with Alzheimer's. Thus began O'Brien's chronicle which resulted in his heartbreaking, defiant, profound book, On Pluto: Inside the Mind of Alzheimer's.

"Words are the core of my life," he writes. But that is exactly what you are robbed of with Alzheimer's Disease (AD). So he has to keep running -- fast -- to beat the inevitable deadline. In On Pluto we meet his family, who vacillate between acceptance and denial -- and why not? Ultimately, they are forced to come to terms with the reality and rearrange expectations and plans for the future.

O'Brien rails against the God who has betrayed him. A good Catholic, he feels guilt and remorse. Priests assure him that God has resilient shoulders and understands his frustration. But does O'Brien? Can he understand? "You don't give a shit about me," he rages at God. ""I thought you were supposed to be here for me. I'm doing the best that I can."

As he deteriorates, he explains how he has to label things now -- so he won't brush his teeth with liquid soap again. His life has become a strategy to hold on to as much normality as possible. We see his determination intertwined with huge chunks of humor -- the only way to get through this disease.

But it's also the lushly drawn memories that keep him going. O'Brien guides the reader through his childhood and adulthood, illuminated by the richness of his poignant Irish writing. "The memories keep me whole, and serve to stitch a patchwork quilt of experiences that leave indelible images of a life that cannot be forgotten." And it won't be.

We're honored that Greg O'Brien has chosen to work with USAgainstAlzheimer's (USA2) to help educate decision makers and the public about this horrendous disease. Greg will be the guest on our upcoming Alzheimer's Talks (a free monthly teleconference series produced by USAgainstAlzheimer's). On April 17th you will get a chance to hear from Greg about his book, why he has chosen to speak out and what we each can do to speed the path to a cure.

Greg and USA2 are determined to beat Alzheimer's in his and our lifetime.