On Pluto (2 page)

But equally important to furthering research for a future cure is an understanding of the human experience of Alzheimer's now. What does it feel like to live with Alzheimer's? This kind of knowledge is also necessary, but it requires a different kind of investment. It takes courage and empathy.

We're all terrified of Alzheimer's. The fortress of fear, shame, stigma, alienation, and isolation that surrounds Alzheimer's
today is not unlike what we saw with cancer 40 to 50 years ago. We didn't even say the word “cancer.” Instead we called it “the big C” in hushed voices. But something changed. We began talking openly about cancer. We began wearing looped ribbons and walking to raise awareness and money, and as communities, we began rallying around our neighbors with cancer, offering dinners and carpools and support. We acknowledged the human experience of living with cancer. And now we have treatments for cancer. We have cancer survivors.

Right now, we have no Alzheimer's survivors. We need to find the courage to talk about Alzheimer's, to acknowledge not just the end of this disease, but also the beginning and the middle. We need to change the image of this disease, which tends to depict only an elderly person in end stage, “an empty shell,” someone dying from Alzheimer's. Someone who is, perhaps, easier to ignore. This image excludes the millions of people LIVING with Alzheimer's, people newly diagnosed in their 40s, 50s, 60s, and 70s; people living somewhere in the beginning and the middle. People like Greg O'Brien.

What does it feel like to live with Alzheimer's? What does that image look like?

This is what Greg O'Brien so bravely, intimately, and beautifully shares with us. Recounting memories of his mother and grandfather, the day of his own diagnosis, symptoms of disorientation, stories of forgetting names and faces—even his wife, told with unflinching truth, grace, and humor, Greg shares with us what it feels like to live with Alzheimer's in the hope that we will better understand it. Understanding is the path to empathy. Empathy is the key to human connection.

Greg and I met a couple of years ago to talk about Alzheimer's. I expected to listen to this stranger, tell him what I knew, and help him out if I could. Then he'd be on his way, and I'd go back to my life without Greg O'Brien. Instead, I sat with a man so open and real, a man fighting to be present and live every
single day to the fullest, with everything he's still got, a man who could find humor in the ugliest and scariest of moments. I was captivated, enamored, inspired. Surprised.

Since that day, Greg's Alzheimer's continues to advance, but the man I met more than two years ago is still here. He's tenacious, funny as hell, generous, incredibly smart, and brave. He's still open and real. He loves his family, his friends, and Cape Cod with a huge heart. He's a man I'm proud to call my friend.

Greg has told me many times that he believes his purpose is to share this story, that it might reach and improve the lives of millions of people traveling a similar journey.

I believe it will, Greg.

—Lisa Genova, PhD,
New York Times
best selling author of
Still Alice, Left Neglected
, and
Still Anthony

P
REFACE:

L
IVING
W
ITH
A
LZHEIMER'S

G
REG
O'B
RIEN

“As I look back over a misspent youth, I find myself more and more convinced that I had more fun doing news reporting than any other enterprise. It really is the life of kings.”
—H.L. Mencken

A
scribe is nothing without good notes. For years I've taken detailed notes as an embedded reporter inside the mind of Alzheimer's, chronicling the progression of this monster disease. Ever since I knew that something was terribly wrong after a serious head injury had “unmasked” a disease in the making, my reporting instincts compelled me to document, to 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.

Death comes to all. While in the natural, we have little rule over time and place, we can choose the attitude as we head through the tunnel to a brighter light. As Leonardo DaVinci observed in the 15
^th
century: “While I thought that I was learning how to live, I have been learning how to die.” Aren't
we all, if we lift the thin veil of denial?

So, we press on in the shadows of role models. One of the most inspiring to me is a man called “Sweetness.” He taught us legions on the gridiron about perseverance. The late Hall of Fame Chicago Bears legend, Walter Payton, nine times an All Pro, was one of the most prolific running backs in NFL history; he died too young at age 45 of cancer. Toward the end of his extraordinary career, a sports commentator declared on air in full reverence: “Walter Payton has run for more than nine miles!” To which his co-anchor replied intuitively, “Yes, and Payton did that getting knocked down every 4.6 yards, and getting back up again!”

If anyone has true grit in the fight against Alzheimer's, it is Glen Campbell. Diagnosed with the disease in 2011, he refused to retreat, courageously relying on his muscle memory as one of the nation's greatest songwriters and country and pop singers, teaching the rest of us along the way how to shine when the stage lights go dark. Campbell, while he could recall lyrics, launched his “Goodbye Tour” with three of his children joining him in his backup band. Sadly, in April 2014, it was reported that Campbell, at 78 still a man for all seasons in his inner soul, had become a patient at a long-term care facility.

Campbell was a lamppost to me earlier in life. I was drawn to his music on cross-country trips from New York to the University of Arizona where I attended school; his sweet, often raw and throaty voice, resonating from an eight-track tape cartridge, offered the verve to keep me focused and driving in my yellow Opel Kadett. His example today still keeps me focused and driving.

On these treks, I memorized almost every word of Campbell's Greatest Hits, produced in 1971, never forgetting to play repeatedly: “Wichita Lineman” as I crossed Kansas; “By the Time I Get To Phoenix,” as I drove through the Petrified Forest in remote northeastern Arizona, often at 2 am with
moonlight glistening off the semi-desert shrub steppes and colorful badlands; and “Gentle On My Mind” as I passed the graceful Santa Catalina Mountains, rising from the valley on the outskirts of Tucson. I can hear his voice now.

Award-winning filmmakers James Keach and Trevor Albert have eloquently captured the marvel of Campbell's music, his love of family, and his battle with Alzheimer's in a distinguished documentary,
Glen Campbell…I'll be me.
For anyone seeking to understand the journey of Alzheimer's and the endless solitary struggle of those afflicted “to be me,” this Keach/Albert documentary is required viewing; it is edifying to the point of boundless wisdom. Campbell is a “Rocky with a guitar,” Keach has said.

And then there's Pat Summitt, the legendary retired coach of the Tennessee women's basketball team, who told the
Knoxville News Sentinel
after announcing her diagnosis of early-onset Alzheimer's: “There's not going to be any pity party, and I'll make sure of that … Obviously, I realize I may have some limitations with this condition since there will be some good days and some bad days.”

And so it is with chronic illness, good days and bad days. You get knocked down, you get back up. Again and again. You find a way to win—as New England Patriots Coach Bill Belichick would insist—on the playing field, on the job, in the home, or in a fight against cancer, heart disease, AIDS, Parkinson's, autism, depression, diabetes, dementia, or any number of vile illnesses. Lying down in football, as it is in wrestling, is a position of defeat. That's not a good place for any of us. As a famed billboard on Boston's Southeast Expressway proclaimed in the early '70s about Boston Bruin premier center Phil Esposito: “Jesus Saves. But Esposito scores on the rebound!”

My place today is with the disease early-onset Alzheimer's; it's a death in slow motion. A freeze frame at times. Alzheimer's and its predecessor, hardening of the arteries, stole my maternal
grandfather, then my mother. And now it's coming for me.

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, just as it was for my mother. 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. Doctors advise that I will likely write and communicate with declining articulation, until the lights dim, but other functions will continue to ebb. Daily exercise and writing are my succor, helping me reboot and reduce confusion. I try to stay locked in, as a missile is on target, but “locked in” likewise is a medical disorder in which an individual who cannot speak because of paralysis communicates through a blink of an eye. Some days, I find myself between definitions—using every available memory device and strategy, cerebral and handheld, to communicate.

All the darkness in the world, my mother taught me, cannot snuff out a single candle. I know that darkness. It's a place I call “Pluto,” in allegorical terms, 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 can 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 out as Alzheimer's overcomes at intervals. Pluto is the perfect place to get lost. Formerly, the ninth planet about 3.1 billion miles from Earth, it is now relegated to “dwarf planet” status. Pluto's orbit, like Alzheimer's, is chaotic; its tiny size makes it sensitive to immeasurably small particles of the solar system, hard-to-predict
factors that will gradually disrupt an orbit. Over the years, I've taken close family, colleagues, and clients “out to Pluto” to discuss off-record unmentionables of life in a place without oxygen. One day, like my grandfather and my mother, I won't return from this dark, icy place; when that happens, I want family and friends to know where I am.

The Irish like to say, “Never get mad, get even.” And so, I'm getting even with Alzheimer's—not for me, but for my children, for you and your children, and for a generation of Baby Boomers, their families and loved ones, who face this demon prowling like Abaddon.

On Pluto: Inside the Mind of Alzheimer's
is not a pity party or a misery memoir. It is an insider's guide, a generational road map of how to battle this cunning killer for as long as possible. To fight an enemy, one must study the enemy, and have working strategies in place. As the great ancient Chinese General Sun Tzu, assumed author of
The Art of War
, once counseled, “Tactics without strategy is the noise before defeat.”

There is plenty of noise on the Alzheimer's front today, much defeat, and hardly enough funding for a cure. Not even close.

****

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 ten or 15 years before diagnosis. With some, the progression, for reasons unknown, is far quicker.

This is not your grandfather's disease; it is fast becoming a disease of the young or young at heart. It's been said that Alzheimer's is like having a thin sliver of your brain shaved off every day.

Stephen King couldn't have devised a better plot.

Should you be frightened if you frequently forget where you put your keys? Maybe it's nothing, perhaps a “senior moment,” or maybe it is the start of something. There is a clear distinction between forgetting where you parked your car and forgetting what your car looks like; forgetting where you put your glasses, and forgetting that you have glasses; getting lost on familiar roads because you've been daydreaming, and getting lost because your brain's capacity to store information is greatly diminished.