By hook or by crook, I was destined to connect in Ireland with John Joe Vaughan — two brash Irishmen separated by a sea of blue, roiling waters rushing to a horizon where water flushes up against the sky. It was God-ordained.

I had met John Joe (pictured above, right, with Greg O’Brien) eight months earlier at Logan Airport upon my return to Boston from Dublin, an annual pilgrimage to Erie; he had just arrived himself with family to visit his daughter Rena, who now lives in New Hampshire. While I was on the cellphone responding to a queue of backlogged voicemails, Rena began waving at me. She recognized me from a photo in my book, On Pluto: Inside the Mind of Alzheimer’s.

“I want you to meet my father,” she said, noting that her dad had been diagnosed with Alzheimer’s, and was reticent to talk about it until reading Pluto. She had given him a copy.

I was humbled, but that was just the beginning.

The Lord works in mysterious ways.

John Joe, 79, of New Ross in County Wexford, ancestral home of the Kennedys, has a smile that would light the River Liffey and the handshake of a heavyweight champion. He embraced me, eyeball to eyeball, and I saw the tears streaming down the side of his creased, righteous face, the two of us in a fight against a demon of a disease.

I cried, too.

“I know how it feels,” he said to me. “We fight together now as brothers, right?”

“Right!”

And so we are brothers, joined now in a worldwide fight against Alzheimer’s, from Cape Cod to the Irish Sea. On the lip of Worldwide Alzheimer’s Day, September 21, marking a month-long international awareness campaign, the fight is fully engaged.

And if the tag-team, rope-a-dope of John Joe and I are any indication, Alzheimer’s, in time to come, could be down for a hand count, if lawmakers worldwide, various committed parties, caregivers, and those with the disease, that can take 20-years or more to run its death-in-slow motion course, join forces around the planet.

This was no brief encounter with John Joe — a father of eight with his devoted wife Peggy, grandfather of 17, a retired teacher and school principal, raised in rural Marshalstown without electricity and paved roads. He invited me to spend a week in late July writing and just hanging with him over a few pints at his family’s summer cottage on the Irish Sea in the fishing village of Duncannon, out on a peninsula at the mouth of rivers Barrow, Nore and Suir, overlooking the majestic 800-year-old Hook Head Lighthouse. It’s one of the oldest working lighthouses in the world where legend has it that monks from the nearby Dubhan monastery lit fires in the fifth century to warn ships from the treacherous rocks. Today, the Fresnel lens flashes every three seconds; I counted the blinks in my bedroom each night as I tried to sleep, captivated by the night sky flecked with infinite specs of white, reflecting on the lighthouse and the craggy peninsula just across from the narrow strait called Crooke. It is a place where in the mid 1600s British military tactician Oliver Cromwell, charged with defeating the rebellious Confederate Coalition in Ireland, declared that he would take the country “By Hook or by Crooke,” a declaration that would last in the vernacular hundreds of years.

And so John Joe and I met by Hook or by Crooke, in county Wexford where my mother’s family hailed–she, as well, a victim of Alzheimer’s. John Joe’s mother also died of Alzheimer’s and his older brother is stricken with the disease, and now doesn’t recognize John Joe, a journey that awaits him, he fears.

The Lord works in mysterious ways.

Over a pint in Wexford Town, John Joe, named for his uncle John and his father Joseph, talked for one of the first times about the horrors of Alzheimer’s that is consuming a generation worldwide, one diagnosis of dementia about every minute, one of the world’s biggest health and social challenges, according to the Alzheimer’s Association. Globally, the number of individuals living with dementia (the death part comes later) is expected to rise from the present 46 million to more than 131 million in the next 35 years at a staggering cost of care. In the US alone, the cost of care for those with dementia is expected to rise to $2 trillion by 2030.

“I’m emotional about this,” says John Joe. “I can’t control that; it’s the card I was dealt. What can you do about it? I refuse to give in. So I fight on. I retreat into myself and fight on. It makes me nervous, the progression I have to face.”

Once quick-witted and gifted with the Irish natter, John Joe is now slower to the draw, yet he uses humor to make fun of the fact that he can’t remember. As they say in Alzheimer’s, he makes new friends every day. A remarkable man, an incredible teacher–to his children, his students, and to me–John Joe always had a fascination with the world beyond him. He encouraged everyone around him to open their minds to broader horizons. Now his world is shrinking in disturbing ways, but he presses on in muscle memory, indelible images, analogous to a palate of oil colors ready to paint a canvas.

John Joe has always been a fighter, yet he has an artistic soft side, a thriving right brain that is guiding him back to his love of art, a self-healing therapy from the ravages of a disease that robs a sense of self. He spends hours now painting in oils; it’s a passion and yet a challenge to remember what colors to use. So he has devised a scheme of selecting the proper oil colors, somewhat similar to a carpet swatch display where John Joe has laminated and labeled the colors to choose the right ones. And he does.

Art–whether painting, music or writing — stimulates the brain, stirs memories and reduces agitation caused by Alzheimer’s. By his own admission, John Joe is no Michelangelo, yet his work is inspiring in so many ways. Upon my visit to Duncannon, he presented me with an impressive painting of Hook Head Light. It hangs now in my family room.

“What scares me about this disease,” he says over another sip of his pint, “is the loss of memory and the inability to carry a conversation. The brain just isn’t processing; it’s stalled. It’s embarrassing. So I often avoid conversation. I retreat into myself, and at times deal with rage. People who know me say, ‘He’s changed a lot.'”

I understand. I tell him about my daughter’s wedding two summers ago when I had to detach myself several times from family and friends to retreat in solitude and restart the brain. “I used to hold court as such gatherings,” I tell him. “I thrived on it. My nickname among friends was the ‘Senator from Cape Cod.’ No longer. I’ve left office; things have changed.”

What hasn’t changed about John Joe is his heart and his gut Irish humor. Alzheimer’s drives one from the mind to the place of the heart, the soul. “I may have tears in my eyes, “he says, “but I’m not crying out of sorrow. It’s part of what I’ve been handed. I was blessed with a good family that gives me strength. I have no cause for complaint.

“I laugh, like you, at how long it takes me to remember.”

I draw the analogy with John Joe, one he relates with, of comparing Alzheimer’s with the basement of a house. “Ever been in a basement doing laundry at night when someone in the kitchen turns the cellar light out?” I ask him. “You scream, right, and you throw a few ‘F’ bombs until someone upstairs turn the light back on. That’s Alzheimer’s. A light goes off, and one goes into rage because it’s dark. At some point, the light goes off forever.”

John Joe laughs, the kind of gurgle one would expect from a leprechaun. I’m looking for the rainbow now. He’s on a roll. “If a cure comes,” he says. “It will likely come from America. I hope you call me up some day and say, “John Joe, I have a little pill for you…”

“You’ll get the first call,” I tell him.

Two Irish guys in a pub, full circle near the Irish Sea, separated by 2,992 miles, connected for a lifetime by a disease that will take their lives. In some ways, doesn’t get any better…

Photo courtesy of Larry O’Malley

Greg O’Brien’s latest book, “On Pluto: Inside the Mind of Alzheimer’s,” has won the 2015 Beverly Hills International Book Award for Medicine, the 2015 International Book Award for Health, and is an Eric Hoffer International Book Award finalist. He is also the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. NPR: All Things Considered has run a series of pieces about O’Brien’s journey, online at npr.org/series/389781574/inside-alzheimers. In 2009, he was diagnosed with Early Onset Alzheimer’s. His maternal grandfather and his mother died of the disease. For more information go to: OnPluto.org. O’Brien serves on the Alzheimer’s Association Advisory Group for Early Onset Alzheimer’s.

The Huffington Post: International Alzheimer’s Month: Full Circle on the Irish Sea

      

Perhaps Judy Jaffe Gelfand saw the demon coming after the disease had stolen her mother; she never spoke about it. Alzheimer’s often pursues in cunning stealth until the demon pounces. Such talk then was taboo, as was talk years earlier of cancer — the “Big C,” a conversation expressed quietly, almost in hand signals, in closed circles, in the family kitchen.

So Judy, as her mother had done and as instincts guided, led by a heroic example that inspired her family, underscored the need to find a cure for Alzheimer’s, and inspired a nation to talk about this haunting disease that seems locked on to a gender, affecting women far more than men.

The math is numbing. To say that Alzheimer’s disease disproportionately affects women is an understatement parallel to saying that Judy Jaffe Gelfand had the courage and heart of a legion of fighters.

A concert pianist, a remarkable music teacher, and a stunning woman inside out, Judy Gelfand died in 2004 of Alzheimer’s after close to decade-long battle with the disease–3,652 days, 87,658 minutes, 315,360,000 seconds.

Alzheimer’s never sleeps.

Observes Judy’s daughter Elizabeth Gelfand Stearns, co-producer of the Oscar-winning film Still Alice, “As the smash Broadway musical Rent asks us to consider: ‘How do you measure a year? In daylights, in sunsets, in midnights, in cups of coffee, in inches, in miles, in laughter, in strife.'”

Perhaps all of the above.

Like the fictional Harvard Professor Alice Howland in Lisa Genova’s bestselling novel Still Alice, Judy Gelfand, a pianist at the Julliard School of Music, has become a face of Alzheimer’s and a barometer of the tempest that is brewing. Women are at the epicenter of this disease. More to the point, says the Alzheimer’s Association:

• Among the more than 5 million Americans diagnosed with Alzheimer’s, two thirds, are women age 65 and older.
• At 65, women have a one in six chance of developing Alzheimer’s, compared with a one in 11 risk for men.
• Sixty-three percent of the 15 million unpaid Alzheimer’s and dementia caregivers in the U.S. are women, sustaining high levels of stress and depressive symptoms.
• A woman in her 60s is twice as likely to develop Alzheimer’s disease as she is to develop breast cancer.
• With 78 million baby boomers entering their later years, the cost of Alzheimer’s care in the U.S. is expected to reach $20 trillion by 2050.

So do the math.

“As tragic as it is, Alzheimer’s picked the right person in Judy Gelfand,” says Elizabeth in an interview. “We all stood by, watching her slowly fade, a heart breaking train wreck for our family. Yet in spirit, my mother fights on.”

It is the spirit of The Judy Fund that offers the greatest promise igniting awareness of the staggering number of women afflicted with Alzheimer’s. Since its establishment 10 years ago, The Judy Fund has raised more than $5.5 million to support Alzheimer’s research and advocacy in partnership with the Alzheimer’s Association.

“The Judy Fund is a wonderful example of how one family chose to transform loss into action, honoring Judy, while also working to change the future for millions,” said Angela Geiger, Alzheimer’s Association chief strategy officer. “Over the years, The Judy Fund has contributed to Alzheimer’s Association mission activities including, research, care and advocacy, and most recently the focus has been on raising awareness and learning why women are disproportionately impacted by Alzheimer’s disease, says Geiger.

This donor-advised fund at the Alzheimer’s Association was created by Judy’s husband Marshall Gelfand (link is external) of Palm Springs, a founding partner of Gelfand, Rennert & Feldman L.L.P., a leading entertainment business management firm. The Judy Fund is managed by Elizabeth, who left her post in 2004 as senior vice president of strategic marketing at Universal Pictures. Elizabeth, the fund’s chairman, also previously served on the board of directors of the national Alzheimer’s Association. The Judy Fund is the fastest growing family fund in the history of the Alzheimer’s Association.

“The gifts of my mother continue to flow,” says Elizabeth. “She is present in our family’s lives, a role model to strive for. She was a beautiful woman physically and at heart until her last breath. In Alzheimer’s, she had incredible capacity to still be Judy, even in her silence. That’s also the power of the message of Still Alice.

“There needs to be a much better plan in place today than there was for my mother and my grandmother” states Elizabeth, “the tragedy for them, is that there was no plan in place.”

To fight an enemy, one must study the enemy, and have a plan. As the great Chinese General Sun Tzu, author of The Art of War, once counseled, “Tactics without strategy is the noise before defeat.” The Alzheimer’s Association does have a plan in place, but not adequate funding. Not even close. Consider the issue of how Alzheimer’s is impacting women.

“We’ve never really taken the time to figure out why,” says Elizabeth. Historically, she says, science and trial studies have ignored women.

Most of the research studies, to date, have been done on men. Surprisingly, with the high incidence of Alzheimer’s among women, a gender under siege, there has never been a comprehensive study done of women’s brains and Alzheimer’s. With an increase in the number of woman diagnosed, we are now at a tipping point–an irreversible moment in time, like a glass of fine Bordeaux Cabernet Sauvignon spilling over onto a white-linen table cloth. Standing up the glass will not retrieve the wine nor will it remove the crimson stain.

Of particular concern, says Elizabeth, is the fact that 66% of the Alzheimer’s population here in the US are women, and those women share another biological fact – the loss of estrogen through menopause. When studied, this estrogen loss may be a factor that leads to deficits in brain metabolism that could lead to Alzheimer’s. While women live longer than men, the estrogen impact could be significant. In short, the manner in which women’s brains change later in life could put them at higher risk for Alzheimer’s or a decline in cognitive function.

Beyond the hunting symptoms, beyond the disturbing statistics, beyond the cost of caregiving is the stark fear–fear of losing self in a slow death of a thousand cuts, exacerbated in families with a history of Alzheimer’s.

“Am I afraid? Of course I’m afraid,” says Elizabeth Gelfand Stearns. “I lost my grandmother and my mother to Alzheimer’s. I’m a face of this disease.”

Following lines of the family tree, Elizabeth and her husband Richard fear for their three children: Ella, 15, a high school sophomore; Jackie, 20, who’s working this summer at the University of Wisconsin’s Alzheimer’s Research Institute; and Greg, 23, an engineering major at the University of Michigan.
“But I’ve decided there’s a lot I can do,” says Elizabeth. “There’s a lot we can all do to stop Alzheimer’s. That trumps my fears.”

I know the fear. My maternal grandfather and my mother died of Alzheimer’s. My paternal uncle died of the disease just a few months ago, and before my father passed away, he was diagnosed with Alzheimer’s. Now the disease is coming for me. Five years ago, I was diagnosed with Early Onset Alzheimer’s after a traumatic head injury, doctors say, “unmasked” a disease in the making. The diagnosis came two weeks after being diagnosed with cancer. I also carry the Alzheimer’s marker gene APOE4 from both sides of the family. I’m a poster boy myself.

And like Elizabeth, my mother, Virginia Brown O’Brien, is the hero of my life; she taught me courageously how to live with Alzheimer’s in faith, hope and humor, refusing to give in until the demon consumes.

Elizabeth and I have bonded.

“Yes, I’m afraid,” says Elizabeth again, as we talk about our mothers. “I don’t want this disease. We can make a plan, and do far more in funding and research for a cure. We can do it in our lifetime. The fear of Alzheimer’s drives me. There’s no way I’m going to just sit back and allow this diseases to keep going. Not happening. No way!”

Judy Jaffe Gelfand is smiling. Her daughter makes her proud.

Greg O’Brien’s latest book, “On Pluto: Inside the Mind of Alzheimer’s,” has won the 2015 Beverly Hills, the 2015 International Book Award for Health, and is a 2015 Montaigne Medal Finalist as well as a 2015 Eric Hoffer Category Finalist. He is also the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. In 2009, he was diagnosed with Early Onset Alzheimer’s. His maternal grandfather and his mother died of the disease. For more information go to: OnPluto.org. O’Brien serves on an Alzheimer’s Association advisory group for Early Onset Alzheimer’s.

The Huffington Post: The Judy Fund: Fighting to Keep the Memories

      

“Hope is a waking dream,” Aristotle once wrote.

Anything, indeed, is possible. Yet misplaced hopes prolong the nightmare.

There is a bolus of misplaced hope today on the Alzheimer’s front, prolonging the nightmare, as we desperately seek a cure — often times reaching fathomably for the quick fix, the false hopes. But there is no easy way out of this nightmare. Alzheimer’s is a vicious, complex disease for which there is no snake oil.

I have a direct stake. Five years ago, I was diagnosed with Early Onset Alzheimer’s. I covet the quick fix, but sadly it’s not at hand.

“The public needs to understand — and researchers need to better explain — that we will beat Alzheimer’s only with its full-throated support of fact-based science,” David Shenk, author of the masterful book The Forgetting, and Dr. Rudy Tanzi, chairman of the Research Consortium at Cure Alzheimer’s Fund and a professor of neurology at Massachusetts General Hospital/Harvard Medical School, wrote recently in the Wall Street Journal.

The statistics are numbing:

• Alzheimer’s is the sixth leading cause of death in the United States, and the only leading disease still on the rise. More than 5.5 million Americans have been diagnosed today with Alzheimer’s or related dementia, and about 35 million people worldwide.

• In the next 35 years, these numbers will triple, barring a medical breakthrough. By 2050, 135 million worldwide will have some form of dementia.

• In the next 15 years, Alzheimer’s is expected to exceed cancer and heart disease sevenfold. Without a cure, it will bankrupt Medicare. Annual health care costs will increase from $203 billion in 2013 to $1.1 trillion in 2050.

• Tragically, the federal government last year appropriated only $591 million for research into the disease (about the cost of a single long-range bomber).

And we’re going to halt this disease with barking salesmen and carnival cures? As comedic savants Seth Meyers and Amy Poehler have discoursed in a celebrated Saturday Night Live skit, “Really!?!”

Write Dr. Tanzi and Shenk in their WSJ piece on Alzheimer’s, “Thirty years ago, the world latched on to false hope that aluminum in antiperspirants and cookware was the culprit. Then came the cinnamon cure, the cayenne-pepper cure, the coconut-oil cure. The latest buzz is to say ‘yes’ to marijuana and ‘no’ to gluten and carb.”

Sure, less pizza, a swig of coconut oil, some cinnamon on your oatmeal, and a few tokes of dope might be good in the moment (please use deodorant if you’re going to hang with me), but these strategies will not cure Alzheimer’s; it’s not like flipping a switch, the experts say, people far smarter people than me. Such false hopes distract from sound research in a disturbing disconnect that serves only to delay the rescue.

The other day, I warned my brother-in-law about the flight of Alzheimer’s coming. I said I was the canary in the coalmine. “Then we shoot the canary!” he replied. Made me think of the sage observation of the Scarecrow in the Wizard of Oz: “Some people without brains do an awful lot of talking.”

And have you heard about Jellyfish?

A Florida researcher studying comb jellyfish has gained traction in a new form of brain development that could lead to treatments for Alzheimer’s, Parkinson’s, and other neurodegenerative diseases, according to a recent report in Newsmax. “Comb jellies … can regenerate their brains in less than four days. In one experiment, a comb jelly regenerated its brain four times,” the report states.

The barkers have started selling new cures. Praise the Lord and pass the Aricept!

Yet there is extraordinary science in play. Biogen recently reported encouraging results in clinical trials of its drug “aducanumab,” which clears destructive beta-amyloid from the brain, note Dr. Tanzi and Shenk. In April, Duke University’s Carol Colton reported a promising new drug target for reducing brain inflammation.

The prominent research consortium Cure Alzheimer’s Fund (which I proudly support), recently funded a breakthrough experiment by Dr. Tanzi and his colleague Doo Yeon Kim that recreated real time Alzheimer’s in living human brain cells in a petri dish.

Another consortium breakthrough, Dr. Tanzi and Shenk report, drew a distinguished National Health Institutes of Health “Blueprint” grant for drug development in clinical trials to patients.

“To cure Alzheimer’s ultimately, we need to support serious research,” Shenk, a senior advisor to the Cure Alzheimer’s Fund, told me in a recent interview. “This is a very complicated disease, one of the most complicated diseases we’ve ever seen. Understandably, people get latched on to ‘wouda-shoulda-coulda’ cures, the simple stupid stuff, and they take eyes off the ball. We need to stay focused.”

And thus we must shout from the Capitol Dome for exponentially increased federal appropriations.

Finding a cure for Alzheimer’s and the development of innovative pharmaceuticals is much like the game of Mouse Trap, the 1980 video arcade, manufactured by Exidy, in which a player uses a four-position joystick to maneuver a mouse throughout a maze, gobbling up cheese scattered along the paths. One at a time, six cats are released into the labyrinth to chase the player; the maze is equipped with three sets of color-coded doors, which the player can open or shut by pressing the corresponding buttons in order to block the cats’ approach.

Or perhaps more like Pac-Man: 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!

Let’s keep real hopes of a waking dream alive…

ABOUT THE AUTHOR

Diagnosed in 2009 at age 59 with Early Onset Alzheimer’s, award-winning investigative reporter, Greg O’Brien, acting on instinct and journalistic grit, felt compelled to document his experience. He began compiling 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. Those notes became his latest book, On Pluto: Inside the Mind of Alzheimer’s. Since publication, O’Brien has become the recipient of the 2015 International Book Award for Health 50+; the 2015 Beverly Hills International Book Award, Medical division; a 2015 Montaigne Medal Finalist; and a 2015 Eric Hoffer Category Finalist. He also is the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James. O’Brien’s maternal grandfather and his mother died of the disease and he carries a marker gene for Alzheimer’s. He is a spokesperson for USAgainstAlzheimers, and recently has been appointed to the National Alzheimer’s Early Stage Advisory Group for the Association where his position will allow him to spread the word about this disease on the national stage. For more information go to: OnPluto.org.

The Huffington Post: A Waking Dream

      

Irish playwright George Bernard Shaw once said, “Life is no brief candle … It is a sort of splendid torch, which I’ve got hold of for the moment, and I want to make it burn as brightly as possible before handing it to future generations.”

Bob Mumford burns bright today, a remarkable torch to family and friends, as the winds of life seek to douse his spark. I met Bob more than 30 years when we were young bucks on Cape Cod; I was a cub reporter, and Bob was a brilliant transportation expert on this fragile spit of land whose population in summer swells to the size of Boston. There’s only one way on and one way off this peninsula — a dead end, the shape of a blacksmith’s fist and forearm. It is a “wild and rank place,” wrote Henry David Thoreau in the 1800s: “A man may stand there put all of America behind him.” The land here narrows to a seagull swoop; so one has to know their stuff to expound on traffic.

Bob still knows his stuff. Age has blessed him with great sagacity; he’s now putting all of America — life as he once knew it — behind him.

Weeks ago, walking on the lip of spring into the eclectic Chocolate Sparrow café on the Outer Cape in Orleans on a tempest of a March day, Bob at a distance looks the picture of health. A handsome man in the fifth decade, his smile is engaging, his handshake strong, his body language poised.

Yet there is something different about him. He is wearing a tight blue ski cap, covering what appears to be tiny white suction cups attached to the head; he’s carrying a canvas satchel, the size of a small toaster, with a battery pack and chords that snake beneath the ski cap.

“Every day’s a blessing,” Bob declares, knowing I’m unaware of his denouement.

“How are you doing?” he asks openly regarding my diagnosis of Early Onset Alzheimer’s, a disease that stole my maternal grandfather, my mother, my paternal uncle and now is coming for me.

“Every day’s a blessing,” I respond in kind.

I’m stunned as Bob takes off the cap. I fumble for a response, and can only find the words to say, “My God!”

Bob’s head is shaved; it’s covered with electrodes that on cue, he explains, zaps what is left of a rare, terminal brain tumor. The process is called Novocure; it produces an electric field that disrupts and destroys the cancer cells as they are dividing.

A section of Bob’s tumor, as much as possible, was removed last summer at Dana Farber Cancer Center in Boston, along with about 75 percent of his cranium, the part of the skull that encloses the brain. Called the “braincase,” the cranium, research tells me later, protects the brain and head, and supports facial structures such as the eyes and ears, holding them in place to collect sensory information most efficiently.

Hard to imagine losing a “braincase,” somewhat like an egg rolling off a table.

After the operation when Bob was handed his battery pack lifeline, he asked doctors how long he had to cart it around.

“From six months to forever,” he was told.

“How long is forever?” Bob asked.

It’s a question many of us ponder today.

The human brain is a fragile organ that inaugurates connectivity the first week in utero. It contains 100 billion neurons — 16 billion times the number of people on Earth — with each neuron igniting more than 10,000 synaptic connections to other neurons, totaling more than a trillion connections that store memories. If your brain functioned like an old digital video recorder, it could hold more than 3 million hours of TV shows, enough video storage for 300 years. Not bad for a mass the size of an average head of cabbage, with the encoding, storage, and retrieval capacity to determine, on a good day, how many angels can dance on the head of a pin.

Yet Bob, a champion of a man, is sanguine about his state of mind and dreadful memory loss, a mindset we both share today. It is dispiriting to lose a thought in a second, 86,400 seconds in a day, not knowing when the next lapse will occur; to stand exposed, and yet stand one’s ground, to begin to grasp in fundamental, naked terms, who one really is — the good, the bad, and the ugly. The ugly is haunting; the many things one would like to take back over the years, but cannot — feelings of failure and transgression.

As Baby Boomers, Bob and I are coming of age. Over coffee at a corner table, we reflect on the past. We always thought, until now, that better days lay ahead. That’s the way it is with unconquerable Boomers — sons and daughters of the Greatest Generation whose grandparents endured World War I, and whose parents then survived the Great Depression and World War II, perhaps the last world conflagration until Armageddon. These boomers, a record 76 million of us born between 1946 and 1964, first played by the rules, broke the rules, then made new rules.

Many of us grew up in the ’50s, formative years when Einstein was still thinking, Hemingway was still writing, and Sinatra was still crooning. Our lives reflected history: the long, fading shadow of Franklin Delano Roosevelt, the dropping of hellish atomic bombs on Hiroshima and Nagasaki, the Korean War, the election of presidents Dwight Eisenhower, John F. Kennedy, Lyndon Johnson, Richard Nixon, and all his heavy baggage; the apocalyptic Cuban Missile Crisis, the Vietnam War, Woodstock, the birth of free love, and the death of innocence. It was a revolutionary time that spanned perhaps more cultural shifts than any other generation with writers, artists, and musicians and who still define this country’s political, secular, and artistic persona.

Now Bob and I must work to redefine ourselves, as the shadows of life creep in like a fog rolling toward the shoreline. Death by a thousand cuts? We don’t see it that way.

“Unfortunately, life is a fatal disease,” Bob opines.

I nod my head. “It is what it is,” I say.

Still we haven’t lost humor; Bob laughs at the Bugs Bunny riposte, “Don’t take life too seriously. You’ll never get out alive!”

Crazy wabbit!

Aren’t we all a bit crazy, swimming against the odds?

The father of two incredible children, Bob was diagnosed last July after his beautiful, caring wife Sarah and friends noticed something was deeply wrong. Bob was off his game, not remembering, losing at times his sense of self.

“You have a problem,” doctors told him after tests confirmed that he had a rare Glioblastoma Multiforme (GBM) brain tumor with only 8,000 known diagnosis, a survival rate of one percent, and the house betting against surviving an operation.

“I dodged a bullet,” Bob tells me in full gait, gratified to have survived the procedure and be able to “eat, think and talk,” the basics of life.

“I told my doctor, ‘Make sure I come out of this.'”

Bob speaks from the heart, a journey one takes from the cradle to the grave, accelerated by mind numbing disease.

A lesser man might have sought an easier way out. Not Bob. He defines “fight.” Look the word up in Webster’s you might find a synonym that says, “See also Bob Mumford.”

Bob is a role mode. Years ago, having witnessed firsthand the painful, terrifying slow demise of my grandfather, my mother and my uncle from Alzheimer’s, a death in slow motion, I sought an exit strategy and failed at it–learning, as Bob exemplifies today, that the real measure of an individual is not the stock portfolio, the business card, the material possessions, or good looks, but the fight in one to get up off the mat after getting knocked on your ass. Lying down is a position of defeat. Bob has reinforced this in me. He stands tall, swimming against the odds.

Such challenges are motivation to dig deeper into a cognitive reserve. The process of fighting off symptoms — whether cancer, Alzheimer’s, ALS, AIDS, Autism, heart disease or any number of vile illnesses — is exhausting, and yet exhilarating, when one succeeds in a forceful fight for clarity.

The conversation between us now moves to nature, as it often does in these parts, to herring and the olfactory phenomena displayed in Atlantic herring, alewives, as they make their annual migration at the strike of spring — just down the street through the ancient Brewster Herring Run, thousands of them fighting, like salmon, against a flush of water, as the alewives rush in gut instinct up the slick, steep water stone ladders of the run from Cape Cod Bay to the Upper Mill ponds to spawn in fresh water kettle ponds where they were born. The fish repeatedly are flushed back by cascading water, hitting fishheads on rocks, yet instinctively climbing the ladder again. Bob and I relate to that.

Cognitive reserve in primal nature! My late writing mentor John Hay, considered among the nation’s top nature writers, wrote about the Brewster marvel in his inspiring book, “The Run,” connecting dots to the survival instinct in all of us. “The fish kept moving up,” he observed. “I watched the swinging back and forth with the current, great-eyed, sinewy, probing, weaving, their dorsal fins cutting the surface, their ventral fins fanning, their tails flipping and sculling. In the thick, interbalanced crowd there would suddenly be a scattered dashing, coming up as quickly as cat’s-paws flicking the summer seas. They have moved by ‘reflex’ rather than conscious thought.”

Bob and I today are moving by reflex, rather than conscious thought, with an accelerant of humor.

Laughter can be a powerful antidote to dementia — the pain, conflict, and stress of it. A good laugh, doctors say, reduces tension and can leave muscles relaxed for up to 45 minutes. Laughter boosts the immune system, decreases stress hormones, and triggers the release of endorphins — the natural drug of choice.

Siri, my droll personal assistant and the knowledge navigator for my indispensable iPhone 5, is getting into the act.

I often ask Siri, “Tell me a joke about Alzheimer’s?”

“I can’t,” she responds. “I forget the punch line.”

Bob laughs a grin that obscures the blue ski cap. It’s another victory for us. And so we live to fight another day … And so he did.

POSTSCRIPT: Bob Mumford died Sunday, May 31, after a valiant fight. His candle burns brightly in spirit.

Greg O’Brien’s latest book, “On Pluto: Inside the Mind of Alzheimer’s,” has won the 2015 Beverly Hills International Book Award, and is a 2015 Montaigne Medal Finalist as well as a 2015 Eric Hoffer Category Finalist. He is also the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. In 2009, he was diagnosed with Early Onset Alzheimer’s. His maternal grandfather and his mother died of the disease. O’Brien carries a marker gene for Alzheimer’s. For more information go to: OnPluto.org

The Huffington Post: Lessons in Speaking From the Heart