On Pluto: A journalist reports on the Alzheimer’s battle from the inside

Those of us fighting Alzehiemer’s Disease on a daily basis are running in place, trying desperately to find a way to cope. It’s a death in slow motion, like having a sliver of your brain shaved every day. The dying part comes later.

With the launch of National Alzheimer’s Disease Awareness Month in November, millions across the country are focused not only on finding a cure, but on better care for those affected with the disease, as well as for the caregivers who struggle to provide support and guidance. The Cure Alzheimer’s Fund of Boston and other researchers have made impressive strides, but far more needs to be done. Meanwhile, doctors scramble to slay this demon—one that’s expected to bankrupt Medicare and decimate the Baby Boom generation.

I’ve chronicled the progression of my own disease; for years I’ve taken detailed notes from inside the mind of Alzheimer’s. Ever since I knew something was horribly wrong (after a serious head injury had “unmasked” a disease in the making), my newspaper reporting instincts compelled me to document and compile a blueprint of strategies, faith and humor, a day-to-day focus on living with Alzheimer’s, not dying with it—a hope that all is not lost when it appears to be. Alzheimer’s stole my maternal grandfather, then my mother. Now it’s coming for me.

So, should one be frightened if you frequently forget where you put your keys? It may be just a “senior moment,” or it might be the start of something more serious. There is a clear distinction between forgetting where you parked your car and forgetting that you have a car; getting lost on familiar roads because you’ve been daydreaming, and getting lost because your brain’s capacity to store information is greatly diminished.

The numbers about Alzheimer’s don’t lie. They are numbing, and may be working against you, as the world’s population grays.

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. In layman’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.

I’ve been told I will likely write and communicate with declining articulation until the lights dim, while other functions will continue to ebb.

Right now, I’m in the fight of my life, yet, as my mother taught me, all the darkness in the world cannot snuff out a single candle. I know that darkness. It’s a place I call “Pluto.” In allegorical terms, it’s a reference from my early days as an investigative reporter 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 hear what is said.”

The Pluto metaphor still works for me, more than ever, as I seek the peace of isolation and pursue the urge to drift.

Yet, the battle continues, which is why I ask you to join the army today that’s marching for a cure. Please don’t assume this won’t be your story some day, or the story of a friend or loved one.  

GREG O’BRIEN has more than 35 years of newspaper and magazine experience as a writer, editor, investigative reporter, and publisher. Over the years, he has contributed to, among other publications, the Associated Press, UPI, USA Today, Arizona Republic, Boston Herald American, Boston Metro, New York Metro, Philadelphia Metro, Providence Journal, Cape Cod Times, Boston Irish Reporter, and Boston Magazine, where he was senior writer. His latest book, On Pluto: Inside the Mind of Alzheimer’s, is available on Amazon.com and OnPluto.org. He is also the subject of the short film, directed by award-winning filmmaker Steve James, online at livingwithalz.org. In 2009, at age 59, he was diagnosed with Early Onset Alzheimer’s. He also carriers the marker gene for the disease.

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