On Pluto (5 page)

In 2009, I was diagnosed with early-onset Alzheimer's, several years after first experiencing early symptoms and after a horrific head injury sustained years earlier in a bicycle accident that doctors say “unmasked” a disease in the making. Dumbass that I was, still am, I wasn't wearing a helmet at the time. Repeated clinical tests, an MRI, and a brain scan confirmed the diagnosis. The brain (SPECT) scan revealed “a large deficit involving the temporal parietal and also occipital lobes bilaterally,” as noted in the blunt 80 pages of my medical records. That's code for pack your bags. Another test revealed that I carry a gene called ApoE4. Present in about 14 percent of the population and implicated in Alzheimer's, ApoE4 is a known genetic risk for the disease.

Inheritance indeed is a mixed bag. Doctors tell me that I'm working off a “cognitive reserve,” a reservoir of inherited intellect that will carry me in cycles for years to come. They tell me to slow down, conserve the tank. I'm not sure how much reserve remains; I guess I'll find out how smart my mother was. I'm hoping she was a genius. The brain I inherited is like an old Porsche engine. It has to crank at high speeds, or it sputters. When I run out of gas some day, I hope I pull off the road to a place with a water view. For now, I keep driving, foot to the floor.

I strive to keep the focus today on
living
with Alzheimer's, not dying with it.

But the view within is out of sync many days. The “right side” of my brain—the creative sweet spot—is mostly intact, although the writing and communication process now takes much longer. The left side, reserved for judgment, executive functions, and financial analysis, is in a free fall on bad days. Doctors advise that I will likely write and communicate, with diminishing articulation, until the lights go out, as other functions continue to wane.

“Plan for it,” they have advised me.

But as the great Bambino once said, “You can't beat the person who won't give up.”

These demons
, I keep telling myself,
don't know who they're fucking with!

Years ago, I thought I was Clark Kent, but today I feel more like a baffled Jimmy Olsen. And on days of muddle, more like Mr. Magoo, the wispy cartoon character, created in 1949, who couldn't see straight, exacerbated by his stubbornness to acknowledge a problem, or like Mr. Potato Head, with the wacky pushpins and all. The genius of Brooklyn-born investor George Lerner in the early 50s, the original Mr. Potato Head sold for 98 cents, was the first toy ever advertised on television, and came with pushpin plastic hands, feet, ears, two mouths, two pairs of eyes, four noses, three hats, eyeglasses, a pipe, and eight felt pieces resembling facial hair. Fifty years ago, Hasbro provided a plastic potato body, given complaints of rotting vegetables.

I think of myself now as Mr. Potato Head with a rotting head and stick-on body parts, depending on my mood and the brain's diminishing ability to function.

Before the onset of Alzheimer's, I thought of my brain as a large depository, a dumping ground of sorts, a large storage bin for stashing a cornucopia of politics, current events, sports, trivia, and points of view that nobody really cares about but me. In
Alzheimer's, the brain atrophies; it shrinks radically, a shrinkage of brain tissue. And I always thought shrinkage was what happened to guys after a dip in a cold ocean.

“Getting old ain't for sissies,” Bette Davis once opined. She was spot on. We all need to put on our big boy and big girl pants.

****

Daily medications serve to keep my engine in tune and slow a progression of the disease: 23 milligrams daily of Aricept, the Cadillac of Alzheimer's medication, the legal limit; 20 milligrams of Namenda in a combined therapy that serves to reboot the brain; 50 milligrams of Trazodone to help me sleep; and 20 milligrams of Celexa (Citalopram) to help control the rage on days when I hurl the phone across the room, a perfect strike to the sink, because in the moment I can't remember how to dial, or when I smash the lawn sprinkler against an oak tree in the backyard because I can't recall how it works, or when I push open the flaming hot glass door to the family room wood stove barehanded to stoke the fire just because I thought it was a good idea until the skin melts in a third-degree burn, or simply when I cry privately, the tears of a little boy, because I fear that I'm alone, nobody cares, and the innings are starting to fade.

Hey, I'm not stupid, nor are others with Alzheimer's; we just have a disease.

But on particularly down days, in between moments of focus, I feel a bit like a svelte stand-in for Curly Howard of The Three Stooges, lots of running in circles—“nyuk-nyuk-nyuk … woob-woob-woob!” Alzheimer's is a sickness that runs in circles or meanders for an eventual kill. It's analogous to the prototypical arcade game Pac-Man in which a pie-faced yellow icon navigates a maze of challenges, eating Pac-dots to get to the next level. While the iconic video game was designed to have no ending, there are no “power pellets” in Alzheimer's to consume the enemies of ghosts, goblins, and monsters, as this Pac-Man in slow motion consumes brain cells, one by one.

Game over!

“You're a pioneer,” a counselor once urged me in a men's early-onset Alzheimer's support group, speaking before a gathering of lawyers, engineers, architects, and a minister—all diagnosed with the disease, and individuals as accomplished as one would find anywhere. “Take good notes,” he urged us.

I have.

Having witnessed the demise of family members, seen the anguish firsthand inside nursing homes, felt the disconnect of dementia in intimate terms, I've overcome a reticence to speak out. There was a time when I worried about what family, friends, colleagues, and clients would think or say. No longer. I suppose one could say that I'm outing myself now. Gore Vidal once observed, “Style is knowing who you are, what you want to say, and not giving a damn.”

I don't give a damn, if that's what it takes to get the word out.

As any writer knows, solid reporting follows a stock of knowledge. So, I've studied the brain to the extent that I can and have learned, over time, that it is the most energy-consuming part of the body; it represents about two percent of the body's weight, but has the raw computer power of more than 16 billion times the number of people on Earth. Without sufficient brain power, some suggest, we're like astronauts on a space walk whose lifeline has just been cut. We drift to the ends of the universe. Out beyond, to Pluto.

Boomers will drift, facing an unimaginable epidemic of Alzheimer's and related dementias, in projected numbers seven times greater than cancer or heart disease, whose critical research and funding starkly outpaces Alzheimer's tenfold. There are an estimated 35 million people worldwide today diagnosed with Alzheimer's or a related dementia, an estimated five million in the U.S. afflicted with Alzheimer's, and predictions of up to 13.8 million Americans diagnosed with the disease by 2050.
^[
λ
]

Researchers suggest new ways of combating the disease. Alzheimer's in the making must be stopped long before it damages the brain, doctors say. Research shows that once an individual begins to lose synapse (the brain structure allowing a neuron, a nerve cell, to pass an electrical or chemical signal to another cell), and once neurons are lost, the brain cannot recover. Alzheimer's starts long before symptoms are apparent to others, perhaps ten or more years earlier, and if diagnosed early and treated with medications before loss of synapse, the progression may be slowed, although it cannot be stopped, as doctors are learning.

Part of living with Alzheimer's and slowing the progression is in the daily training regimen to accelerate synapse. Consider the jaggy dendrite we learned about in high school biology—a spine or tree-like projection of a neuron that passes signals to other brain cells. Exercising the brain, experts say, builds new dendrites, pathways that create alternate routes for synapse that can help one function with Alzheimer's for longer periods, while other neurons are dying off. In short, I believe, one can re-circuit the brain to receive and transmit information, staving off, for a time, some of the more horrific symptoms of this disease. But in the end, the neurons go dead.

This is the place I find myself today, pushing back daily against a loss of synapse that is progressing, as neurons go dead. The challenge with public perception of Alzheimer's is that few want to embrace the disease, take it seriously, at least not until a family member or close friend is found in a nursing home sleeping in urine and talking to the walls. Public awareness of this disease, a balance between science, medicine, and faith, needs to change dramatically in anticipation of an Alzheimer's epidemic for Baby Boomers and others to come. In a snapshot, Alzheimer's is not the stereotypical end stage; it is the journey from the diagnosis to the grave.

There is an upside: you can get out of jury duty in a New York minute!

****

Does loss of brain function render loss of self; can we thrive in spiritual terms when the mind begins to fail? While the brain can be dissected, the soul is far more elusive, a place where sparks can miraculously shine through dysfunction. The balance between science and religion constitutes the essence of life, as we all struggle with this. “Death is not extinguishing the light. It is putting out the lamp before the dawn has come,” wrote Rabindranath Tagore, a noted 19
^th
century Bengali poet, philosopher, and thinker, the first non-European to win the Nobel Prize in Literature. Tagore and Einstein, among the brightest minds of the last millennium, both wrestled with concepts of the mind, life, death, and beyond: can the essence of a person survive without full function of the brain? It is a question probed daily by experts in the field of Alzheimer's, other forms of dementia, autism, and a range of brain disorders. It is a question for which those with Alzheimer's seek an answer.

Tagore suggested the answer is “no” when the two met on July 14, 1930 at Einstein's home on the outskirts of Berlin, thought to be one of the most stimulating, intellectually riveting conversations in history, exploring the gap between the mind and the soul. The encounter was recorded.

“If there be some truth which has no sensuous or rational relation to the human mind, it will ever remain as nothing so long as we remain as human beings,” Tagore told Einstein.

Replied Einstein bluntly, “Then I am more religious than you are!”

Out of the mouth of babes, six years later, a Manhattan sixth grader named Phyllis pursued the answer further after a question was posed in her Sunday School class on the truth between science and belief in God—the dividing line between the brain and the soul. Moved by the query, Phyllis wrote Einstein, and he replied candidly: “Everyone who is seriously involved in the pursuit of science becomes convinced that some spirit is manifest
in the laws of the universe, one that is vastly superior to that of man.”

Einstein later said, “Before God we are all equally wise—and equally foolish.”

^λ
Alzheimer's Association
Alzheimer's Disease Facts and Figures.

Accessed December 15, 2013.
http://www.alz.org/alzheimers_disease_facts_and_fgures.asp

3

H
ELL
N
O!

T
HE JOURNEY THROUGH ALZHEIMER'S IS A MARATHON
, if one chooses to run it. It is exhausting, fully fatiguing, just staying in the moment and fighting to remember like an elephant, the largest land animal on Earth.

Elephants are my favorite. They have documented long-term memory, coveted today by Boomers. On a shelf in my office is a small ceramic elephant holding a fishing pole. I purchased it years ago from a gallery in Santa Fe, a cerebral place of awe-inspiring natural light. The ceramic serves to remind me daily of the need for retention and focus. The artwork has a place of prominence: It is the elephant in the room.

The word “dementia” is onomatopoeia for many, a word that conjures up a sound—in this case, a howl in the night or biblical imageries of a demonic maniac, a portrait no one wants to own.
Dementia is derived from the Latin root word for madness, “out of one's mind,” an irreversible cognitive dysfunction, a walking nightmare in which you can't escape the bogeyman no matter how fast you run. Alzheimer's is a marathon against time, and so I keep running to outpace this disease that ultimately will overtake me.