I could wile away the hours Conferrin’ with the flowers Consultin’ with the rain And my head I’d be scratchin’ While my thoughts
The Huffington Post: If We Only Had A Brain: Participate In Clinical Trial
I could wile away the hours Conferrin’ with the flowers Consultin’ with the rain And my head I’d be scratchin’ While my thoughts
The Huffington Post: If We Only Had A Brain: Participate In Clinical Trial
Mother’s Day has a way of bringing us back to the womb, providing prospective beyond a Hallmark card or bouquet of flowers–flashes of reflection, a carousel of streaming images on an old-school slide projector embedded in the mind. The images keep flashing beyond the day. Memories abound.
My mother, the hero of my life, was no more perfect than anyone else’s mother; in many ways, she was a composite of her generation. Virginia Brown O’Brien brimmed in gifts and with love, but never was a great cook. A second-generation Irish American with close ties to County Wexford, she boiled everything gray. To kill the taste, we used salt at home, pounds of it, as seasoning, and Ketchup, poured liberally for supplemental flavoring. In the cluttered kitchen of our family home in Rye, New York–not far from the Upper East Side of Manhattan where my mother grew up–the pot roast simmered on Sundays from morning Mass until early evening. The hoary smell that wafted through the three-story stucco home still makes me nauseous today; I’m sure the scent still wafts from the walls. You had to cut the pot roast with a chain saw.
My mother–a stunning woman barely five feet, three inches and 105 pounds –gave birth to 10 children and had five miscarriages, an accomplishment in itself. She used to call me a “lazy chewer,” but meat on the table was always rawhide-tough, laced with fat. With all those mouths to feed, mom knew how to stretch a dollar like it was Gumby. Yet at times, she seemed troubled.
As a teenager, I noticed her often standing at the kitchen window overlooking a corn patch with Rye Brook in the distance, meandering out to Long Island Sound. She was talking to herself, fully engaged in conversation. I wasn’t sure with whom. At first, I thought it was a way of deflecting the stress of raising a brood of kids with a collective attention span of a young, yellow Lab. The disengaging increased: misplacing objects, loss of memory, poor judgment, seeing things that weren’t there, and yes, the rage, warning signs years later that I began noticing in myself.
After my father, a small man with the heady name of Francis Xavier O’Brien, had retired as director of pensions for Pan Am, and my mom left her teaching job, my parents sold the house in Rye and moved to Cape Cod, settling into our Eastham summer home, not far from Coast Guard Beach on the Cape Cod National Seashore. I felt privileged to be the only sibling living on Cape, but with favor comes responsibility. Over time, my dad developed prostate cancer and severe circulation disorders requiring several life threatening operations, rendering him to a wheel chair. My mother progressively continued her cognitive decline into Alzheimer’s, but fought off the symptoms like a champion to care for my father, once a swashbuckling World War II Navy man, among the Greatest Generation, the independent conquerors of world evil, who now clung to their spouses in old age. But what about the Greatest Generation of women who collectively served in inspiring ways? Where are their accolades, their medals, the headlines, the respect? To add insult, two thirds of those stricken now with Alzheimer’s are women.
“I can’t get sick,” my mother kept saying when all the siblings urged her to see a doctor. “I can’t get sick,” as if by saying, the words made her whole.
Yet, she was sick, and she knew it.
The forewarning signs were textbook Over time, she began sticking knives into sockets; hiding money, wads of it; brushing her teeth with liquid soap; refusing to shower; not recognizing people she had known all her life; serving my father coffee grinds for dinner.
The behavior upset my siblings, and me, and equally distressed my father, who observed it nightly. At first we collectively passed it off as a change-of-life transition. We were in denial, but the shift intensified.
Yet unremittingly, she cared for my dad, always refusing to succumb to disability. She encouraged me in my own progression of Alzheimer’s; she taught me how to fight, how to live with dementia, how never to give into it. She became my role model in the resolute life she lived.
Then one late Sunday afternoon in 2006, the disease began to overtake. I brought my mother a photo of all her children from a recent family reception, and she couldn’t name one of them, including me. She had no clue, and was still driving at the time. As I left my parent’s home that night, I could only think of the jarring interjection in the movie Jaws when Chief Brody first encountered the mammoth shark: “YOU’RE GONNA NEED A BIGGER BOAT!”
All we had was a dinghy. Mom was done, at the tipping point, asking me at one point, “Greg, would you take over?” She was ready to pass the baton in this race against Alzheimer’s, a baton handed her from her father, who had died of the disease.
The efficacious passing the baton in a relay race is as fundamental as lacing up a pair of running shoes, and has relevance in the fight against Alzheimer’s. Timing is critical. When a runner hits a mark on the track, usually a small triangle, the awaiting runner–on cue and face forward–opens a backward hand, and after a few strides, the lead runner has caught up and exchanges the baton. Often the lead runner will shout “stick!” several times as a signal for the awaiting runner, glancing behind, to put out a hand.
Looking back, I realize now that my mother in her race against this disease was yelling at me, “Stick…stick…stick!”
The baton was passed on a seminal summer day on a bicycle ride from Brewster to Eastham, along the bucolic Cape Cod Rail Trail. I had taken my young son, Conor, and his friend on a 15-mile trek to visit my mother –a pastoral passage beside sparkling cranberry bogs, lush meadows, saltwater marshes, and fresh water ponds. In all ways, it was a cleansing, majestic day. Mom, however, was more muddled than usual. With the temperature inching toward 80, she scolded all of us for not wearing winter coats. To take the “chill” off, she insisted the boys don heavy, oversized sweatshirts from a spare bedroom closet, largesse from winters past. They balked at first, but sensing her resolve, I instructed them to oblige. Mom’s thermostat was shot.
Conor, having witnessed corresponding episodes in the past, concurred, and his friend, Ryan, graciously consented. The second we peddled out of the driveway, turning left on Cestaro Way toward the bike trail, the boys ripped off the sweatshirts and tossed them at me.
I draped them across the handlebars of my bike as we headed back to Brewster, taking in a panorama of primal nature. I was euphoric, in the Zen, incredibly at peace, myself in the early stage of this disease. Alzheimer’s will take you back to childhood. I felt like a kid again, and plied the trail in full speed far ahead of Conor, faster, faster!
The wind was soothing. In the moment, I recalled as a youth I had prided myself on riding a red, three-speed Schwinn racer, no handed! And like a child, I wasn’t wearing a helmet that day. For 30 seconds I peddled back in time, a kaleidoscope of images from youth: Rye Beach on Long Island Sound, the ball field at Disbrow Park, town marina, and out to the American Yacht Club where one could drink in the Manhattan skyline and the Twin Towers in the distance. Then, as abrupt as a clap of thunder, the imagery shifted. I sensed something awry.
In horrifying slow motion, what seemed like frame-by-frame, I witnessed the sweatshirts on the handlebars slip slowly into the spokes. My bike, at full gallop, stopped on a dime, and I was hurled head first over the handlebars about 15 feet into the air, but with the presence of mind at least to shield my left hand over my forehead before impact. I hit the tarmac with the force, it seemed, of a .45 caliber bullet, the impact cutting deep into my knuckles right through to the bone.
On the second bounce, my face hit the pavement in a pool of blood. I was numb, out of body, yet felt something cold pouring down my face. As I finally stood up, I must have looked like the lead role in a Bella Lugosi movie; in pure fright, Conor and Ryan sprinted for help. Two Samaritans sitting on a nearby back deck came to my aid, and collected the kids. The rest is fleeting; a half hour later I was rushed to Cape Cod Hospital in an ambulance, sirens ablaze. After multiple stitches to the head and left hand, I was discharged.
Little did I know that I had unleashed a monster.
Three years later, I was formally diagnosed with Early Onset Alzheimer’s; doctors said the head injury had unmasked the disease in the making. The telltale symptoms had begun years earlier. My genetic loading for Alzheimer’s, the doctors said, was striking–first my maternal grandfather, my mother, then later my paternal uncle and my father. Brain scans and clinical tests confirmed my diagnosis. I also carry the Alzheimer’s marker gene APOE-4.
My father died first, followed four months later by my mother, who had declared upon his death, “I’m not sure how much longer I want to hang around here.” I was there when she died, and promised her that I would fight this disease and try to teach others how to live with Alzheimer’s, as she had.
Mom today is still with me in spirit, that realm between the present and the past, between life and death, looking into infinity. Ever look between two facing mirrors? You face a seemingly endless line of images fading into the distance. In principle, it’s called “looking into infinity.” Each mirror reflects the image into the other mirror, bouncing these reflections back and forth into infinity–gateways, some speculate, to parallel universes.
My mother was a mirror, preparing me as only a mother could, to see through her lens into infinity and pass the baton.
Many months ago, one evening when I couldn’t sleep, typical of my journey, I was lying late at night on the couch in the family room, watching reruns of “Planet Earth.” I sensed a woman sitting next to me. I wasn’t sure if I had drifted off, was in-between sleep, or was just dreaming. I’m still not sure. At first, I thought it was my wife, Mary Catherine; her back was to me. Then the woman turned and looked at me. It was my mother. She stared straight at me.
“Mom,” I said. “I can’t sleep!”
“It’s ok. I can’t sleep either,” she replied in a calming tone.
From what I recall, she then rubbed the back of my head, and within seconds, I fell back into a deep slumber. It was the most restful, peaceful sleep of a lifetime.
These types of encounters are difficult to discuss; one opens themselves up to all sorts of analysis, second-guessing. I get that.
Yet, on a cold January night a year later, I had fallen asleep on the couch again. I got up, as I do every two hours, just to walk around the house, somewhat in disarray. On the way back to the couch, I checked the digital clock on the stove. It was 4:12 am, still dark, black as night. As I walked to the couch, I noticed something moving slowly to port side of the wood stove where embers were alight. It was an image of sorts, but instinctively I was serene with it.
At first, I thought it was just another visual misperception, another hallucination. I was wide awake at the time, focusing intensely on the image. I saw the outline of a woman. She had blonde hair, dressed in clothing familiar to me. The image moved slowly toward me, then backward, then toward me again. The woman was beckoning me with her right hand to follow. She kept summoning. I realized then it was my mother, or a likeness of her. I was at peace in the moment, but it wasn’t my time to move forward. So, I turned on a light. Saw nothing. I turned it off. Saw nothing. Then I went back to bed in great calm, intuitively feeling that I wasn’t alone. I told my wife about the experience the following day. I want to believe it was my mother, but what if it wasn’t? What terrifies me is yet another manifestation of Alzheimer’s.
Still, my mother had my back again a few months ago in an encounter on stage in Beverly Hills where the Golden Globe Awards are presented. I had been asked to speak before 1,000 Hollywood celebrities at an Alzheimer’s fundraiser and Hollywood revue, called ” ANight At Sardi’s.” It was the final performance of this annual event. The stars were out that night in clusters.
The evening was hosted by David Hyde Pierce from the award-winning TV show, “Frazier,” and featured performances by the cast of “The Big Bang Theory,” Joey McIntyre, Jason Alexander, and Grace Potter. Seth Rogen and other A-listers presented as well.
Backstage before my speech, I was incredibly nervous. Few get to stand in this place. I told myself to calm down, that I’m doing this for my Mom, for all she had taught me.
I then heard a soft, confident voice inside that said, “You rock! Greg, you just rock this!”
And so I did.
At the podium, I noticed a woman standing behind me to the right. I felt she was there for encouragement and support. I had a good, calming feeling about it. Several times I wanted to turn around to see who it was, but felt inside: “Just stay focused, stay focused!”
After my speech, I turned around, and the woman was gone.
Later, I asked my wife, “Who was the woman standing next to me?”
My wife paused, “Greg,” she said. “There was no woman, no one was on the stage.”
“No,” I said, “the woman behind me to the right. Who was she? There was a woman standing behind me…She told me to rock it!”
“Greg,” my wife replied, “there was no woman…”
The spirit of mother, I believe, was on the stage with me, and perhaps the souls of others consumed by this demon called Alzheimer’s. They must have had a kick-ass after party. Wish I could have been there.
My mom was always one for emphasis with me; she never thought I got it.
So two days later, at Los Angeles Airport, at a restaurant awaiting a flight back to Boston, my wife gasped as she looked up at a television commercial on the screen above us. The caption read, “For those who rock…”
Then last Sunday, I was asked to speak at an Alzheimer’s walk along Cape Cod Canal before hundreds of participants. I followed my mother’s script about walking in faith, hope, courage and humor. As my wife and I passed the starting line, there was a woman to the right holding a sign and waving it at me. I didn’t know her, but took a photo on my iPhone. The sign read, “You Rock!”
The tears welled up.
Do you believe in angels?
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, as well as a finalist for USA Best Book Awards. O’Brien also is the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. NPR’s “All Things Considered” is running a series about O’Brien’s journey, online at npr.org/series/389781574/inside-alzheimers, and PBS/NOVA followed the Pluto journey in its groundbreaking Alzheimer’s documentary on April 6. For more information go to: OnPluto.org. O’Brien serves on the Alzheimer’s Association Advisory Group for Early Onset Alzheimer’s, and is a patient advocate for the Cure Alzheimer’s Fund of Boston and the distinguished Washington, DC based UsAgainstAlzheimer’s.
The Huffington Post: Passing the Baton, Mother to Son: You Rock!
“If there are no dogs in Heaven, then when I die, I want to go where they went.” — I had to call a family audible on Super Bowl Sunday, amidst the Ooh-Rah for Peyton Manning and Cam Newton– a wrenching down-and-out, an end-life pattern I will never forget.
Changing a play at the family scrimmage line is an intense ordeal, fraught with anxiety. Several years ago I had to call an audible, telling my children I was diagnosed with Early Onset Alzheimer’s and carried a key marker gene (link is external)–the fifth family member to battle dementia. Now I had to break the news that our 14-year-old family dog, a stunning, loyal yellow Lab named Sox, who had defined us with unremitting faith, hope, and love, and was my guidepost in this disease, was going to die that night. Failing kidneys, internal bleeding and neurological complications were overcoming Sox, and I was to be the executioner.
There are no playbooks for such talk. I had to scramble. For most of my adult life, I’ve made a living with words; now they escaped me–blanks, just blanks, as I fought off my own incapacity to connect the dots. In recent years, the family has witnessed my own progression in Alzheimer’s; now Sox, who had been a family caregiver of sorts, was failing. The metaphor was unavoidable.
“It is time,” my wife Mary Catherine and I told our adult children, Brendan, Colleen and Conor, who in many ways were raised by Sox. I could hardly get the words out. There will never again be a family dog that raises our children. And they knew that.
Instinctively, I fumbled for ways to keep Sox alive for just another day at the emergency animal hospital on Cape Cod where she had been taken. The caring veterinary physicians were willing to oblige, but stressed that Sox, namesake of the Boston Red Sox, was in great pain and would likely die alone that night.
That’s all I needed to hear. Sox would pass peacefully on my lap.
“Sox’s functions are shutting down,” the attending physician explained, “and she has neurological issues of confusion and disorientation.
“What do you mean?” I asked.
“It’s as if Sox has dementia, Alzheimer’s,” the doctor explained, unaware of my diagnosis. “That’s the best way to explain it.”
My wife and I were stunned. Sox and I had come full circle.
Our loss is no more heartbreaking then that of other individuals and families in our place. So I write in the midst of our own grief to give collective voice to a bonding, brand loyalty, that lasts a lifetime and beyond.
Sox, a purebred female with boundless verve and devotion, was a “Sweet 16” birthday present for our daughter Colleen, who had been lobbying for a dog for years, and now is a teacher in inner city Baltimore.
“Daddy, please!” she would ask with a gaze that melted my heart.
An old salt of an investigative reporter, I probed breeders throughout New England and found one outside Boston with a newborn yellow Lab, the color of my daughter’s hair. The Lab had been spoken for, but, on reflection, the prospective owner, a cancer victim, wanted the pup to have a secure and loving home, and passed Sox on to us. When presented with her birthday present, our daughter beamed with the energy of pounding surf on the Cape, as she held this wiggly ball of fur in her hand.
It wasn’t long before Sox became the alpha female in the family, the gender opposite of the barreling Labrador retriever in the celebrated movie, Marley & Me (link is external), an adaptation of John Grogan’s fine book. Sox darted through screen doors, peed on the wide pine wood floor in the family room, shed hair faster than Donald Trump, and ate just about everything in sight. When we had to correct her, she bowed her head in shame, sheepishly peering up with soft brown eyes to see if the lecture was over. Early on, Sox had the oomph of a racecar, running in circles around our house until she collapsed in exhaustion. We used to call these laps the “Sox 500.”
Like Marley, Sox also flunked her obedience class in Chatham. The trainer was not impressed.
But we always were, as Sox over the years stole our hearts and taught us about life and how to love unconditionally, and to growl when needed, not to bite. Endearingly simple and a contradiction of sorts, Sox had the gut instincts of a savant and the curiosity of a kindergartener: she always waited for us by the door, wagging her tail in delight as if we had been gone for a year; she could catch a tennis ball in mid air, and fielded grounders like an All-Star shortstop; she picked up sticks in the backyard like a master landscaper; and Sox, I believe, sensed I had medical issues and was always by my side at home, licking my face for reinforcement or lying with me on the couch; she was faster than a speeding bullet, and able to leap tall buildings in a single bound…
Sox had religion, too. When she occasionally slipped away from the house I often found her down the street in the church parking lot at Our Lady of the Cape; maybe she thought she could light candles for us. Do dogs go to Heaven? Many years ago, Pope Paul VI consoled a tearful child with the hope that it might be possible–the reference more recently was incorrectly attributed to Pope Francis. Perhaps Sox hedged her bets.
Sox also loved the salt water and the beach. In summer, she would sit on guard at the bow of my boat on Pleasant Bay, her face pointed at the sea like Leonardo DiCaprio in Titanic. On ocean excursions to the outer beach, Sox always would devour the sand, then run up to the shoreline and drink as much salt water as she could. We scolded her every time, but she didn’t care. Sox knew best. That is until one day when she coughed up what seemed like a gallon of the Atlantic, and pooped sand on someone’s blanket.
There were the tender moments. Sox was on Crosby beach with Colleen (pictured above) and her husband-to-be Matt Everett when he proposed. A moment frozen in time.
The end was no surprise; we saw it coming for many years–loss of weight, loss of hearing, loss of energy, and great difficulty walking. Still, she was in the moment. When the kids were young, Sox would leap up the stairs to their bedrooms at night, making the rounds like a duty nurse. When she could no longer climb, Sox would patiently wait at the bottom of the stairs until they awoke.
As her health deteriorated, our roles changed. I became the caregiver for Sox. She didn’t sleep much at night, awakening about every two hours to urinate in the backyard. The water was going right through her failing kidneys. So for months I slept nearby on the family room couch, just so Sox knew she was not alone. At regular intervals, I walked her to the backyard and we peed together, and afterwards I fed her as much as she could eat. She poo-pooed the dog food, so I gave her boneless Perdue chicken and meatballs. Still, you could see her ribs, yet she wouldn’t give up while she had a prayer. We bonded in new ways.
It wasn’t until later in this full circle walk with Sox that I learned about dog dementia, formally called “Canine Cognitive Dysfunction/Dementia,” or CCD. Sox was a poster child for the disease with progressing symptoms. I had been in denial, as many do in Alzheimer’s: her pacing in circles; incontinence; getting lost in familiar places; not able to retrace her steps back into the house; staring off at times into deep space; not responding to directions she once knew; and sleeplessness at night. I promise, she didn’t drink out of my bowl. Sox, the caregiver, had met me in my place.
When I saw our champion Super Bowl Sunday night at the emergency animal hospital, I knew in my heart it was time to let go, though I struggled with it. Sox just lay motionless on the floor, staring at my wife and me. She knew the end was near. The kids, sucked into a black hole of emotion, all wanted to say goodbye, so we Face Timed Brendan, Colleen and Conor. We all felt as though the wind had been knocked out of us.
Colleen was first to console Sox, a time when love speaks louder than words. She could hardly talk.
“Is she in a lot of pain?” Colleen asked quietly. You could hear her reach for breath. Sox was reaching, too.
“She’s going to sleep, honey, where there is no pain,” I told her.
“Can I see her one more time, Daddy please?”
I cradled my iPhone above Sox, and she made eye contact immediately, those piercing brown eyes that said to us: I’m not leaving; I’m just going away.
“Daddy, please kiss her for me…”
Conor, the youngest in the family, was overcome in numbness.
“Can you just scratch her head for me?” he asked. “Can you give her a hug?”
The moment gave new definition to FaceTime.
Brendan, the oldest, closed the loop.
“Love you so much,” Brendan said, with my phone on speaker next to Sox’s ear. “Hey, it’s me, buddy, Brendan…”
It’s hard for one to catch a breath, releasing raw emotion.
“I love you so much, Sox! You’re the core of this family. You made me smile; you made me so happy. Dad, I’m so sad…I’m so freakin’ sad.”
The words trailed off.
My head is throbbing,” Mary Catherine told me as she said her farewell to Sox in this sterile, yet imitate, six foot-by-six foot room.
“Goodbye, sweetheart,” she told Sox. “I love you!”
In seconds, I was alone with Sox–one-on-one, just as the day I brought her home. I lay next to her on the floor, rubbing her head.
Dammit, this hurt! Sox knew it, that inner sense.
“I love you,” I told Sox repeatedly in a soft voice as I held her close. “It’s ok, just let go, let go, Daddy loves you…”
Moments later without notice, Sox suddenly stood up for one last time. She licked my face, then turned in three tight circles in defiance to death, licked my face again to say goodbye, then lay down, never to get up again.
It was time.
The attending doctor entered the room with two syringes, one to relax Sox, taking all pain away; the other to let her go. With Sox’s in my lap, her head resting on my right knee, the first injection was administered. Slowly, Sox leaned her head back toward me and appeared to smile, as if to say her pain was gone. With the second injection, the doctor told me to keep talking to Sox.
“Hearing is the last thing to go,” the doctor said.
I told Sox again how much we loved her, how much she was a part of our family, that we would never forget her. I hugged her tightly. She was at peace.
The doctor then put a stethoscope to Sox’s heart, and softly uttered two words I will never forget.
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, as well as a finalist for USA Best Book Awards. O’Brien also is the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. NPR’s “All Things Considered” is running a series about O’Brien’s journey, online at npr.org/series/389781574/inside-alzheimers, and PBS/NOVA takes a trip to Pluto in its groundbreaking Alzheimer’s documentary on April 6. For more information go to: OnPluto.org. O’Brien serves on the Alzheimer’s Association Advisory Group for Early Onset Alzheimer’s, and is a patient advocate for the Cure Alzheimer’s Fund of Boston and the distinguished Washington, DC based UsAgainstAlzheimer’s.
The Huffington Post: Where Do All the Dogs Go?
“Y en la profunda oscuridad permanecí largo tiempo atónito, temeroso…”
– Edgar Alan Poe
Para todas las criaturas de la Tierra, no hay nada tan fundamental como la luz del día, que hace florecer nuevos recuerdos y que arroja claridad sobre la vida propiamente dicha. La oscuridad puede ser paralizante: el aislamiento distorsiona la mente.
Con la mente ya en el nuevo año y tras el solsticio de invierno -el momento en que el Sol está más bajo en el cielo y proporciona unas escasas nueve horas y 32 minutos de luz, el día más corto del año-, toca reflexionar.
La travesía que realiza el Sol por el cielo, desde el día más corto al más largo, se ha sometido a medición desde el principio de los tiempos y se ha manifestado en monumentos tales como el Stonehenge en Inglaterra o el Machu Picchu en Perú.
Para muchos, el solsticio de invierno -derivado del latín sol y sistere (que significa “detener”)- puede convertirse en un agujero negro de depresión y soledad intensa a causa de la falta de luz. Lo llaman trastorno afectivo estacional. En la antigüedad se luchaba contra la devastación del invierno y se buscaban maneras de celebrar el solsticio, buscándole un sentido espiritual y de celebración al abismo. Entre ellos: el Newgrange, que está situado en el noreste de Irlanda y data del año 3200 a. C., es un montículo funerario que emerge de una superficie de hierba esmeralda y cuenta con pequeñas aberturas para que la luz solar inunde las cámaras que se encuentran debajo de él precisamente en el solsticio de invierno; o la construcción maya de Tulum (México), que tiene una abertura en la cima que produce un efecto de brote estelar cuando sale el sol en el solsticio.
A medida que el sol va adentrándose en el horizonte en el día más corto del año, los que tenemos alzhéimer u otros tipos de demencia no tenemos nada que celebrar. Trastorno afectivo estacional con esteroides. Nos quedamos parados en la oscuridad. Mientras que el día más largo, el solsticio de verano, se convierte en una metáfora del desafío que supone el alzhéimer, el día más corto representa el desenlace de la enfermedad: siempre presente en la oscuridad.
Los expertos de la medicina conciben el alzhéimer como la confusión propia del final del día y como un “atardecer constante”, un periodo de creciente incertidumbre y agitación, de deambular por la niebla a medida que la luz se convierte en oscuridad, el momento de mayor ira y cambios de humor en las sombras de la mente.
Con el desarrollo del alzhéimer y las placas cerebrales y los nudos neurofibrilares, hay teóricos que sugieren que puede haber una perturbación durante la puesta de sol en lo que los médicos llaman el “núcleo supraquiasmático“. Se trata de una pequeña región del hipotálamo, responsable del control de los ritmos vitales y de hacer que el cuerpo siga ritmos de 24 horas.
Los que tenemos alzhéimer tendemos a desviarnos.
Otra vez estaba despierto a las 4 de la mañana, se trataba de una de las cinco excursiones de esa noche. Se trataba del nuevo yo, con falta de sueño. En la oscuridad del territorio familiar de mi casa en Cabo Cod (al noreste de Estados Unidos), donde llevaba 34 años viviendo con mi familia, me dirigía a trompicones hacia el baño a medida que notaba cómo un entumecimiento se apoderaba de mí, empezando por la parte de atrás del cuello, como si de una niebla penetrante se tratara, y avanzando hacia la parte delantera de la cabeza. En ese momento, era como si se hubiera apagado una luz en mi cerebro. Me había sumido en la oscuridad de no saber dónde estaba ni quién era. Así que cogí mi teléfono móvil como sustituto de una linterna y llamé a casa. Mi mujer, que estaba profundamente dormida en nuestra cama a menos de diez metros de mí, se despertó asustada, pensando que alguno de nuestros hijos podía haber tenido un accidente de coche o que habría muerto algún familiar.
Pero solo era yo. Solo era yo, que me había perdido en el baño.
Lo estresante para aquellos a los que se ha diagnosticado alzhéimer y para quienes les cuidan es dejarse llevar por la oscuridad. Uno nunca sabe quién va a ser en las primeras fases de la enfermedad: ¿seré el nuevo yo o el viejo yo? ¿Hoy estaré encendido o apagado? Stephen King no ha escrito aún nada tan aterrador.
Cuando se tiene alzhéimer, el sol sale y se pone entre la niebla, una niebla de otro mundo en la que uno percibe y experimenta cosas que no son reales, como si se adentrara en Alicia en el País de las Maravillas de Lewis Carroll donde “todo sería lo que no es y, entonces, al revés: lo que es no sería”.
Yo conozco esa oscuridad, igual que mi abuelo materno, mi madre, mi tío paterno y mi padre, que también sucumbieron al alzhéimer. A esa oscuridad yo la llamo “Plutón”, en referencia a mis días como reportero de investigación en los que trabajaba con fuentes que querían permanecer en el anonimato. “Nos vamos a Plutón”, decía yo, “allí nadie puede oír lo que digamos”.
Todavía sigo utilizando la metáfora de Plutón, ahora más que nunca, cuando busco la paz del aislamiento y persigo el deseo de dejar que la corriente me arrastre hasta Plutón a medida que el alzhéimer me derrota. Existen claros paralelismos entre el enigmático Plutón y el alzhéimer. Plutón -frío, seductor, incompatiblemente lejano y protector de sus secretos- es el lugar perfecto para perderse.
Como sucede con el alzhéimer, no llegamos a comprender a Plutón. El que anteriormente fue considerado como el noveno planeta, situado a 5500 millones de kilómetros de la Tierra, ha quedado relegado al estatus de “planeta enano”. La órbita de Plutón, igual que el alzhéimer, es caótica; al ser tan pequeño, es sensible a las partículas más pequeñas del sistema solar y a otros factores difíciles de predecir que pueden perturbar a una órbita. A lo largo de los años, me he llevado a miembros de la familia, a colegas y a clientes “a Plutón” para discutir sobre cuestiones de la vida que no deben mentarse en un lugar sin oxígeno. Llegará un día en el que -como le sucedió a mi abuelo, a mi madre, a mi tío paterno y a mi padre- no volveré de ese lugar oscuro y frío. Y, cuando eso pase, quiero que mi familia y mis amigos sepan dónde estoy.
El pasado verano, el mundo pudo ver más de cerca a Plutón, llamado así por el dios romano del inframundo, cuando la nave de la NASA New Horizons, del tamaño de un piano de cola, pasó a unos 35.000 kilómetros del misterioso planeta enano, dentro del cinturón de Kuiper. Puede que en el proceso el mundo aprendiera involuntariamente algo sobre el aislamiento que supone el alzhéimer: montañas imponentes, llanuras heladas y niebla. Plutón es un paisaje de placas y nudos.
El cinturón de Kuiper se formó de fragmentos del Big Bang, derivado de la creación del sistema solar. El cinturón de Kuiper alberga más planetas enanos como Plutón: Haumea (llamado como la diosa hawaiana del alumbramiento), Makemake (el dios de la fertilidad de los nativos de la Isla de Pascua), y la furtiva Nube de Oort, una posible fuente de cometas que pasan a gran velocidad cerca de nuestro sol y billones de objetos desconocidos. Aquí, en la profundidad del cosmos, orbita Sedna, el primer cuerpo perteneciente a la Nube de Oort que se observó. En este reducido espacio se encuentran las claves de la vida.
En el caso del alzhéimer es imposible discernir las respuestas, pero las metáforas como la de Plutón abundan. Los asteroides, los planetas enanos y la Nube de Oort de esta enfermedad refractan la realidad. Uno se siente abandonado ante manifestaciones fortuitas, sucesiones de tiempo real y códigos que solo sirven para confundir y para enfatizar los progresos de una bestia que ataca sin previo aviso.
Hace poco, Alan Stern, del Southwest Research Institute de Boulder, en Colorado (Estados Unidos), explicó a Los Angeles Times: “Hemos sacado un sobresaliente en exploración (de Plutón), pero hemos sacado un suspenso en predicción de lo que íbamos a ver… Hay ciertas áreas de Plutón que están cubiertas de grandes cráteres, pero también hay llanuras que sugieren que puede que el planeta enano siga siendo geológicamente activo, algo que los científicos no anticiparon y aún no son capaces de explicar. Eso significa que, en una escala de tiempo geológica, Plutón se creó ayer”.
¿Pero cómo es posible?
La cuestión de la existencia de Plutón, de su razón de ser, ha sido debatida desde el principio, ya que las dimensiones paralelas están presentes en la ciencia, en la salud y en la vida. Cuando no podemos explicar algo, solemos tenerle miedo y después tendemos a negarlo.
El doctor Rudy Tanzi, una de las personas más inteligentes del planeta, trabaja para hacer que eso cambie en el ámbito del alzhéimer, que está preparado para diezmar a la generación del baby boom, una generación de la que dos tercios son mujeres. El doctor Tanzi es profesor de Neurología en Harvard y vicepresidente de Neurología del Hospital General de Massachusetts en Boston (Estados Unidos) y director de la Unidad de Investigación de Genética y Envejecimiento. También es presidente del Consorcio de Fondos para la Investigación del Alzhéimer, una de las iniciativas de investigación del alzhéimer más importantes del mundo. Tanzi es la antítesis del tonto de la clase.
Si alguien puede desentrañar las placas y los nudos del alzhéimer, ese es Tanzi, al que la revista Time incluye en su lista de las 100 personas más influyentes. A principios de 2015, junto con su compañero Doo Yeon Kim, Tanzi creó lo que se denominó “Alzhéimer en bandeja”, es decir, células cerebrales humanas en una placa petri en la que se cultivaban los marcadores del alzhéimer, haciendo posible que los científicos pudieran observar las características plutonianas del alzhéimer y los innumerables fármacos vanguardistas que podrían frenar esta enfermedad.
En un simposio del Fondo para la Cura del Alzhéimer que se celebró en el Harvard Club de Boston (Estados Unidos), Tanzi afirmó que si no se encontraba la cura, más de 100 millones de personas padecerían alzhéimer en todo el mundo en los próximos 25 años, lo cual llevaría al sistema sanitario a la ruina. Según declaró Tanzi, el alzhéimer no es solo la enfermedad de los abuelos. Las placas amiloides, los nudos neurofibrilares y la inflamación -los síntomas delatores del alzhéimer- pueden instalarse en tu cerebro a los 30 años. Se trata de un proceso lento que lleva a los siguientes síntomas:
Según Tanzi, el alzhéimer no es la última parada de la línea, sino un viaje directo hacia la tumba, hacia una muerte lenta y dolorosa. Entre los principales factores de riesgo se incluyen: el historial familiar, las lesiones en la cabeza, la genética, el sexo, la edad y los infartos y traumatismos. Estoy tentando a la suerte al tener casos de alzhéimer en mi familia, dos traumatismos en la cabeza, depresión clínica y el gen marcador ApoE4.
Los médicos me dicen “no vas a salir de esta”.
Así que intento luchar contra ello, sigo enclaustrado y apuntando a mi objetivo: ralentizar el progreso de la enfermedad mientras los investigadores como Tanzi buscan una cura en Plutón y más allá. Pero el enclaustramiento también es un síndrome médico en el cual un individuo que no puede hablar a causa de la parálisis se comunica mediante parpadeos. A veces, me sirvo de definiciones: utilizo cada recuerdo y cada estrategia disponible cerebral o manual para comunicarme. Hacer ejercicio diariamente y escribir es mi auxilio, son actividades que me ayudan a resetear y a reducir la sensación de confusión.
Los médicos me dicen que estoy quemando mi “reserva cognitiva”, un depósito de intelecto heredado que hará que mis próximos años sean cíclicos. Me dicen que me relaje, que conserve mi depósito. No estoy seguro de cuántas reservas me quedan. El cerebro que he heredado es como el motor de un Porsche viejo: o funciona a velocidades altas, o renquea. Cuando me quede sin gasolina, espero poder pararme en un sitio con vistas al mar. Por ahora, sigo conduciendo, con los pies en el suelo, mientras intento disminuir los riesgos.
Según Tanzi, la clave para reducir los riesgos es el ejercicio diario, al menos el equivalente a 10.000 pasos al día. Todo el mundo debería regalar por Navidad una pulsera inteligente para seguir su actividad. Además, todo el mundo debería tener interacción social, ejercitar el cerebro diariamente y seguir una dieta saludable; Tanzi recomienda seguir la dieta mediterránea, que incluye fruta, verdura, frutos secos, aceite de oliva, menos carne roja y ácidos grasos omega 3. Según los expertos, es esencial dormir 7 horas al día para sellar y retener recuerdos.
Las estrategias de este tipo, junto con la necesidad de aumentar la financiación para la investigación del alzhéimer, son fundamentales para mantenerse alerta y no dejarse llevar por la corriente hacia la oscuridad “atónitos y temerosos”. Vamos a necesitar cada céntimo y más en el futuro, si queremos cortarle el paso al alzhéimer. Arrojemos algo de luz sobre esta terrible enfermedad para así tener algo que celebrar.
El último libro de Greg O’Brien, ‘On Pluto: Inside the Mind of Alzheimer’s’, ganó en 2015 el premio Beverly Hills International Book Award for Medicine y el premio International Book Award for Health y quedó como finalista de los premios Eric Hoffer International Book Award y USA Best Book Awards. Además, O’Brien inspiró el corto Ve a nuestra portada Facebook Twitter Instagram Pinterest
The Huffington Post: Lo que supone vivir en la oscuridad del alzhéimer