Us Against Alzheimer's

by Marita Golden

  The most disturbing symptoms in my private darkness are the visual misperceptions, the playful but sometimes disturbing hallucinations—seeing, hearing, smelling, tasting, and feeling things that aren’t there, as my mother once did. There was a time in Boston, for example, after a late business meeting when I retrieved my car on the third floor of a parking garage near Boston City Hall, only to find that a thick, grated metal wall had been pulled down to block my path. I feared I was locked in for the night. Walking toward the obstruction, the wall suddenly disappeared. It wasn’t real.

  Then there are those crawling, spider- and insect-like creatures that crawl regularly, some in sprays of blood, along the ceiling at different times of the day, sometimes in a platoon, that turn at ninety-degree angles, then inch a third of the way down the wall before floating toward me. I brush them away, almost in amusement, knowing now that they are not real, yet fearful of the cognitive decline. On a recent morning, I saw a bird in my bedroom circling above me in ever tighter orbits, then precipitously, the bird dove to my chest in a suicide mission. I screamed in horror. But there was no bird, no suicide mission, only my hallucination. And I was thankful for that.

  To add to this mix, in what may be a brush with vascular dementia, I haven’t had feeling in parts of my feet, hands, and lower-arm extremities for almost three years. Doctors are running tests. At least in the summer, out on my boat on Pleasant Bay, I don’t feel the bites of greenheads—those nasty, stinging saltmarsh flies that draw blood.

  Most diseases attack the body, but Alzheimer’s attacks the mind, then the body. At sixty-five, I am reasonably trim with a reflection of muscle memory, but doctors have told me that beneath the surface, I might have the body of an eighty-year-old—a view confirmed in a recent New England Baptist Hospital diagnosis of acute spinal stenosis, scoliosis, and a further degeneration of the spine. Expect more breakdowns, they say. Bring on those greenheads!

  Every night now, I sleep in my clothes; it feels more secure that way, often in sneakers tied tightly at my ankles so I can feel pressure below. Feet, don’t fail me now. As the brain shrinks, it instinctively makes decisions, experts say, on what functions to power and what functions to power down to preserve fuel—much like the diabolical HAL 9000, the heuristically programmed computer on the spaceship Discovery One bound for Jupiter in Stanley Kubrick’s 2001: A Space Odyssey.

  “I’m sorry, Greg, I’m afraid I can’t do that,” my HAL-like brain seems to be saying. Pardon the paraphrase, Hal, but in your own words: “I’m afraid. I’m afraid . . . the mind is going. I can feel it. I can feel it. My mind is going. There is no question about it. I can feel it. I can feel it. . . . My instructor . . . taught me to sing a song. If you’d like to hear it, I can sing it for you.”

  There is no singing today, no artificial intelligence; I’m preserving fuel in my brain and limb-to-limb. I still have feeling on the bottoms of my feet for walking and running, yet no feeling on the tops of my feet. I still have feeling on the bottoms of my fingers for keyboarding, but little or no feeling on the tops of my hands, often at times up to my elbows. The tops of my feet and hands are dispensable, I suppose. My brain, a.k.a. HAL, may be conserving power, I’ve been advised—a sort of a cerebral brownout, akin to a calculated reduction in big city voltage to prevent electrical blackout in a deep sea of confusion.

  A fish rots from the head down.

  My brain was once a file cabinet, carefully arranged in categories, but at night as I sleep, it’s as if someone has ransacked the files, dumping everything onto a cluttered floor. Before I get out of bed each morning, I have to pick up the “files” and arrange them in the correct order—envelopes of awareness, reality, family, work, and other elements in my life. Then it’s off for coffee.

  Ah, my caffeine friend. I love coffee, practically inhale it—a habit from my old days in the Boston Herald American newsroom when I would grab cups of coffee, hot and fresh, and walk from the newsroom down to the press room and back to work out the organization of a story. In my office, there is a retro vintage red tin sign that reads: “Coffee! You can sleep when you’re dead!” But there are moments when I get confused about coffee, too, particularly on certain days walking from my office to the house with my laptop and empty coffee cup in hand. I know I’m supposed to do something with both. My brain sometimes tells me to put the laptop in the microwave and connect the cup to the printer. My spirit says otherwise: Bad dog!

  I’ve been a bad dog lately. The disconnects continue exponentially, and they are alarming. Alone in my office a year ago when my brain froze up, I began screaming at God.

  “You don’t give a shit about me,” I yelled. “Where the hell are you? I thought you’re supposed to be here for me! I’m trying to do the best I can!”

  Moments later, realizing I had to meet with someone, I rushed out to the car, only to find the back left tire as flat as a spatula.

  “Great, just fucking great,” I yelled in rage. “God damn it, you just don’t give a shit about me, Lord!”

  I limped in the car about three miles down winding country roads to Brewster Mobil, in a Tourette’s of swears the entire way.

  “Got a problem,” I told the attendant abruptly. “Fix it.”

  The sympathetic attendant, a kid who had graduated from high school years ago with one of my sons, said dutifully that he’d patch the tire right away—working his pliers to pull out the obstruction that had sent me into chaos. He returned in short order.

  “You might want to look at this,” he told me.

  I stared intently at the culprit with astonishment. I couldn’t believe what I saw. “Believe it,” he said.

  The culprit was a small, narrow piece of scrap metal, bent into a cross.

  A perfect cross.

  THE DEMONS WERE CHASING

  An Excerpt from On Pluto: Inside the Mind of Alzheimer’s

  GREG O’BRIEN

  The demons were chasing, faster and faster. I could hear the screeching howls, the pounding pursuit through a canopy of thick oak and red maple trees that enshroud Lower Road beside a dense, choking groundcover of honeysuckle and myrtle. Like the sea fog that rolls in at intervals over the mud flats, the demons were disorienting. I had to sprint, a full-out panic dash, to avoid capture at sundown.

  The heart was pounding; the sweat pouring. The monsters were gaining on me, ready for the pounce. As a hazy spring afternoon gave way to dusk in pastoral Brewster on Outer Cape Cod, a numbing fog crept in like a headless horseman—first in misty sprays that tingle, then in thick blankets that penetrate the mind, disorient the senses, rising slowly from the base of the neck to the forehead. Alone, I was enveloped in fear and full paranoia; it had a smell of wind chill from a raging North Atlantic storm, the kind of nor’easter that takes the breath away. In the moment, there was no escape. The mind plays tricks.

  At full gait, I hurried past Brewster’s fecund community garden with its impenetrable stalks of corn that stood in sturdy platoons, dashed by a forest of moss-covered locust trees bent in grim serpentine forms, then sprinted, feet barely touching the ground, past the ancient cemetery of sea captains where Rhoda Mayo was buried in 1783; Dean Gray in 1796; and Rev. Otis Bacon in 1848, who “fell asleep in Jesus,” as his gravestone declares.

  Where was Jesus now? The demons were advancing as a blazing red sun dipped into Cape Cod Bay to be doused like a candle. Faster and faster, they chased. Today, I beat them with every ounce of will in me. But they will be back with a vengeance. Alzheimer’s plays tricks on the mind.

  My life, once a distance run, is now a race for survival.

  There was a time before my diagnosis that I ran six miles a day along bucolic back roads of the Outer Cape, at least one at a six-minute mile pace. Not bad for a guy then in his late fifties. I ran for the simple love of it; the solitude was soothing, listening to the caw of herring gulls, the chirp of peepers, the cry of black-bellied whistling ducks. Now all I hear is the chilling hoots of a barred owl. My mind is dead to the song
of shorebirds as I run to jumpstart my brain at the end of the day, a process akin to crank starting a chainsaw after it has sat overnight on a New England deck in February. You gotta rip at it. So I rip; I run until my legs give out along these country roads that have given way to a frightening labyrinth of confusion that echoes muscle memory to the haunted forest of Oz. Just follow the yellow brick road, I tell myself. We’re off to see the Wizard! Yet the Wizard has no cure. Still, I look for the signposts.

  My Alzheimer’s advances as the lights go faint in the brain.

  So I run from the demons of illusions, confusion, rage, and ongoing depression. My daily running routine has become symbolic of the chase, a race ultimately I will lose. Running for me flicks the light back on; it calms the rage, like letting steam out of a boiling teakettle. Running helps to reboot my mind so I can do what I love most—write, think, and focus; it restores physical and mental stamina. If I’m not running, I’m moving backwards in Alzheimer’s, into the hands of a pack of forbidding demons.

  The demons now have chased me inside. I no longer run on back roads where I get wholly lost in fears and confusion. On a recent Christmas, I was given a family gift of glow-in-the-dark running attire, resembling a Department of Public Works (DPW) vest and pants; the gift that keeps on giving, I was told. The family, concerned that I’d get lost, wander off, or get hit by a bread truck, was pleased with the giving. I was pissed! The gift came with phosphorescent sneaker laces that made me look like an alien from Men in Black. Again, more loss of control.

  Then there’s the “Where’s Waldo?” app, an iPhone GPS application that my wife and kids obtained to determine my location at all times, “for my own good,” of course. For me, it was yet more loss of control and freedom, but reassurance for family that I wouldn’t fall off the edge of Cape Cod, as Columbus and crew feared centuries ago on a broader scale.

  I wish the world were flat; no dizziness then. My family makes me dizzy enough. In my hometown of Rye, New York, near the train station to Manhattan, is a restful tavern called the Rye Grill. At an extended family gathering there a few years ago, my wife told my siblings and some close family friends about the “Where’s Waldo?” app. Instantly, they all wanted a copy. Again, it angered me; more loss of control. Some of my brothers, sisters, and friends were giddy about tracking me, all wanting the app to determine my course to the bar, bathroom, buffet table, and beyond. They were all yucking it up.

  So after a close childhood friend at the function told me he had to drive north a few miles to Connecticut to pick something up, I did what any self-respecting Irishman would do. I asked him to take my iPhone with the “Where’s Waldo?” app as a diversion.

  “That ought to fix ’em!” The Irish never get mad. In an instant, my buddy was gone, up Route 95.

  “Oh, my God!” roared family and friends monitoring my trajectory. “Greg is on Route 95 heading north.”

  I waited by the door of the Rye Grill as those monitoring my GPS progress came sprinting out.

  “I’m not dead yet,” I told them. “So don’t screw with me.”

  I’ve retreated now inside to the treadmill at the gym in Orleans, where I must hold onto the railings so I don’t lose my balance. The monsters have followed me here. They taunt me with loss of self, greater rage, and thoughts of suicide.

  Early on a damp fall evening about two years ago, the rage inside was crushing. I was determined to outrun these fiends, hot on the chase. Survival was then, as today, defined as an extreme sprint, a personal record. So I asked a young, angelic-looking woman at the counter to clock my run.

  “No one will believe this,” I told her. She obliged.

  I held the railings tight, looked straight ahead, and imagined the run of my life. I was going to beat these demons today, kick their ass. At the half-mile mark, my timer—the slight, honey-blonde woman—informed me my time was three minutes, five seconds. Not fast enough, I thought. Not fast enough. My pursuers were gaining. “Not today,” I kept telling myself. “Not today!”

  A minute later, the young woman, concerned at the pace, asked me, “Mr. O’Brien, should you be doing this?”

  “My dear,” I replied, panting hard, running crazy fast. “You’re asking me the wrong question. The questions is: could you be doing this when you’re sixty?”

  She cheered me on. “You run like Superman,” she said. At the stroke of a mile, my time was a personal record of five minutes, twenty seconds. I beat the monsters that day, and impressed a young woman. “Faster than a speeding bullet . . . more powerful than a locomotive.”

  I’m unable now to run as I once did, as the day I set my personal record at the gym. Alzheimer’s breaks down the mind, then the body. But running has become my best friend, and doctors have told me to ramp it up.

  Researchers believe that running may enhance mood, and for those with mild to moderate Alzheimer’s, it may also improve some brain functions that affect daily living, according to an article in the December 15, 2015, issue of Runner’s World. In “Exercise May Be the Best Weapon Against Alzheimer’s,” Alison Wade reported: “And for those at high risk of developing the disease, physical activity may do even more: A growing body of research indicates regular cardiovascular exercise can protect the brain and delay the onset of Alzheimer’s symptoms, improving both cognition and quality of life.” At a recent Alzheimer’s Association International Conference, Laura D. Baker, PhD, an associate professor of gerontology and geriatric medicine at the Wake Forest School of Medicine, presented study results that suggest exercise might be able to do what drugs so far cannot in those at high risk for developing Alzheimer’s: slow the progression of the disease. Wade reported: “[Baker’s] study revealed that after six months, participants who built up to exercising at an elevated heart rate for thirty minutes, four times a week, improved their cognition and had decreased levels of phosphorylated tau protein compared to those in a stretching-only control group. Scientists use tau protein levels as a measure of how Alzheimer’s disease is progressing. The protein naturally increases with age in everyone, but in people with Alzheimer’s, it increases considerably more. In Baker’s study, the exercise group saw a slight decrease in their levels after six months.”

  No drug currently approved has had the same effect. So I run. I will run until I drop.

  TEARS MELTING INTO LOVE

  An Excerpt from Someone Stole My Iron: A Family Memoir of Dementia

  VICKI TAPIA

  Mom’s door is closed. I know that means she is probably asleep. Stressed, I had forgotten to call the assisted living facility before leaving my house today. The bottom of her door brushes the carpet as I carefully open it and peek into her room. Mom is sprawled sideways on her mattress on the floor. The caregivers had moved it there to protect her from falling out of bed. She has somehow shimmied her aqua-colored pajama bottoms down, the nylon material now twisted around her knees. Her pajama top is nowhere to be found. With a room temperature hovering around 80 degrees, her skin feels warm to the touch.

  Despite the fact Mom hasn’t really eaten more than a few morsels of food on any given day for the past six weeks, nothing has prepared me for the shock of seeing her nearly naked, skeleton-like, petite body. Emaciated, the bone at the bottom of her rib cage rises up and looks like it might pierce the skin at any moment. Her shoulders have become a jagged mountain range, her hip bones the rolling hills at its base.

  With a lump in my throat, I recognize a reality. My mother’s physical body is following her mind, irretrievably disappearing. My impulse is to lie down beside her and hug her tightly to me, telling her not to leave me, expressing my deep love for her. I fear such a move might cause her fragile bones to crumble, however.

  Instead, I sit down beside her and call softly, “Mom?”

  Her eyes pop open, and I lean close to whisper, “Hi, Mom, how are you today?”

  “Hi sweetie,” she mumbles. At least that’s what I think I hear. It startles me, since weeks have passed since she last recognize
d me. I smile inside and out, cherishing this unexpected gift. As I bend down to gently kiss her cheek, she puckers up, making kissing sounds into the air. Her eyes drift shut.

  I stroke first her cheek and then her hair, as tears trickle off my cheeks, melting onto her skin. Holding her hand carefully, I kiss this ethereal being, my mother. At the same time, she grasps my hand and brings it to her lips, kissing my fingers. All signs of friction, frustration, and petty annoyances accumulated over the years have vanished. Past hurts have evaporated, no longer holding any meaning. What remains is a pure and palpable love. Over and over, I tell her how much I love her and realize yet again how grateful I am to be with her as she embarks on her final journey from this world to whatever lies beyond.

  “Mom, whenever you’re ready, it’s okay for you to leave us. We’ll be all right. I’ll take good care of Dad,” I hope to reassure her.

  Could she hear me or make sense of my words? Her breaths grow softer as she expels small puffs of air, now peacefully asleep.

  Continuing my vigil beside her, I meditate one more time on our relationship and the storms we have weathered over the years. Even though we’ve had our moments, I know without a doubt how much she loves me. She did her very best to protect and take care of me, raising me to be a strong woman.

  “Mom, I’m not sure if you can hear me. You are the best mother anyone could ever have. I’m so thankful you are in my life. Thank you for loving me.”

  Does she hear me? I’ll never be certain, but somehow, I believe she does. No matter if she can’t process my words, I believe she absorbs my sentiments through some form of energetic osmosis, the murmur of my words softly blanketing her in love.

  OUT OF TIME

  SALLIE TISDALE

  We all know dementia by now: the organ of the brain breaking down in substance and function much as a heart or liver does. By the time a person dies from complications of Alzheimer’s disease, his or her brain is significantly smaller than its normal size. There are several major variants of this process, and the disorder’s progress takes many forms: insidious, incremental, dramatic, fast, and slow. The biology of loss is complicated and not entirely predictable; but in every case, memory, language, and motor control eventually slip away until a person finally sinks into silence and immobility. One could write volumes on the meaning of this gradual dissolving of a person—mustn’t it mean something?