Note: This article was posted on THE HUFF POST 50 Blog on 12/25/2015.
The author is Greg O'Brien, a 35 year veteran of journalism. The essay is poignant, compelling, extremely well written. O'Brien's writing combines passion and science with a poetic quality bringing a delicate light to the stark reality faced by the author.
While the subject is difficult, O'Brien shares his story with a balance of grace and candor that allows the reader to learn, to know, to feel and to consider the magnitude of his experience.
DEEP INTO THE DARKNESS OF PLUTO
"Deep into that darkness peering, long I stood there, wondering, fearing, doubting..." --Edgar Alan Poe
For all creatures of the earth, nothing is as fundamental as daylight, which blooms new memories and sheds light on life itself. The darkness can be numbing; isolation warps the mind.
On the lip of holiday celebrations and year-end resolutions, the tilt of the earth 23.5 degrees from the sun, summons the Winter Solstice when the sun is lowest in the sky, reflecting a scant nine hours and 32 minutes of daylight--the shortest day of the year, a time of inner reflection for all of us.
The sun's purposeful journey across the sky, from the shortest day to the longest day, has been measured since early time, and manifested in such mystic monuments as Stonehenge in England and Machu Picchu in Peru.
For many, the Winter Solstice--derived from the Latin sol (sun) and sistere (to stand still)--can be a black hole of depression and intense loneliness, brought on by deprivation of sunlight. Seasonal Affective Disorder, SAD, they call it. The ancients struggled against the ravages of winter, and sought ways to celebrate the solstice, seeking greater spiritual meaning and celebration in the abyss. Among them: Newgrange in northeastern Ireland dating back to around 3200 B.C., a grassy burial mound rising from an emerald field with small openings to the sky and chambers beneath that flood with sunlight precisely at the Winter Solstice. Consider the ancient Mayan stone building in Tulum, Mexico, which contains a small breach at its peak, producing a starburst effect when the sun rises on the solstice.
As the sun hugs the horizon on the shortest day, there is no celebration for those of us with Alzheimer's or other dementias-- SAD on steroids. We stand still in the darkness. While the longest day, the Summer Solstice, has become a metaphor for the sunrise-to-sunset challenge of Alzheimer's, the shortest day is a symptomatic of the denouement of the disease--ever present at dusk.
Medical experts call the Alzheimer's phenomenon of end-day confusion and restlessness "sundowning," a period of increased uncertainty, agitation and drifting in a fog as light fades to black, a time of greater rage and mood swings in the shadows of the mind.
With the development of Alzheimer's and plaques and tangles in the brain, theorists suggest there may be a disruption at sunset in what doctors call the "Suprachiasmatic Nucleus." This is the tiny region of the hypothalamus, responsible for controlling bodily rhythms to keep the body on a 24-hour schedule.
In Alzheimer's, we tend to wander.
I was up again at 4 a.m. the other night, one of five nocturnal ramblings in the early morning. The new me, paucity of sleep. Picking my way in the dark in familiar territory of my home on Cape Cod, where I have lived with my family for 34 years, I fumbled into the bathroom as I felt the numbness creep up the back of my neck like a penetrating fog, slowly inching to the front of my mind. In the moment, it was as if a light in my brain had been shut off. I was overcome by the darkness of not knowing where I was or who I was. So I reached for my cellphone that substitutes as a flashlight, and called the house. My wife, deep asleep in our bed just 20 feet away, rose like Lazarus from the grave to grab the phone in angst, fearing an early morning call of a car crash involving one of the kids, or the death of an extended family member.
It was me, just me. I was lost in the bathroom.
The stress of Alzheimer's, for those diagnosed, and for their caregivers, is deadening deep into the darkness. One never knows who's going to show up in the early stages of this disease: the new me, or the old me? Will I be on or off today? Stephen King couldn't have written a better thriller.
In Alzheimer's the sun rises and sets on a foggy bottom, an otherworldly haze where one sees and experiences things that are not real, like slipping into Louis Carroll'sAlice in Wonderland where "nothing would be what it is, because everything would be what it isn't."
I know the darkness, as did my maternal grandfather, mother, paternal uncle and my father, all of whom succumbed to Alzheimer's. I call the darkness "Pluto," a reference from my early days as an investigative reporter when I went deep "off-the-record" with sources who wanted to remain anonymous and under the radar. "We're heading out to Pluto," I would say, "where no one can hear what is said."
The Pluto metaphor still works for me, now more than ever as I seek the peace of isolation and pursue the urge to drift out to Pluto as Alzheimer's overcomes at intervals. There are many striking parallels between enigmatic Pluto and Alzheimer's. Pluto--cold, beguiling, incongruously far away, and protective of its secrets--is the perfect place to get lost. You can hear God from there.
Like Alzheimer's, we really don't fathom Pluto. Formerly, the ninth planet, about 3.1 billion miles from Earth, it now is relegated to "dwarf planet" status. Pluto's orbit, like Alzheimer's, is chaotic; its tiny size makes it sensitive to immeasurably small particles of the solar system, hard-to-predict factors that gradually will disrupt an orbit. Over the years, I've taken close family members, colleagues and clients "out to Pluto" to discuss off-record unmentionables of life in a place without oxygen. There will come a day-- like my grandfather, mother, paternal uncle and my father-- when I won't return from this dark, icy place. And when that happens, I want family and friends to know where I am.
The world last summer got a dramatic glimpse of Pluto, named after the Roman god of the underworld, when NASA's New Horizon's spacecraft, the size of a grand piano, flew within 8,000 miles of the perplexing dwarf planet far out in the Kuiper Belt, and in the process, the world unwittingly may have learned something about the hard-to-predict isolation of Alzheimer's: imposing mountains, frozen plains and foggy hazes. Pluto indeed is a landscape of plaques and tangles.
The Kuiper Belt was formed from fragments of the Big Bang, spin-off from the creation of the solar system. It is home to dwarf planets such as Pluto, Haumea (named after the Hawaiian goddess of childbirth), Makemake (the god of fertility of the native people of Easter Island), trillions of anonymous objects, and the furtive Oort Cloud, a suspected source of comets that flash about our sun. Here, deep into the cosmos, Sedna orbits--the first observed body belonging to the inner Oort. This remote expanse holds the answers to life.
Answers are impossible to discern in Alzheimer's, but Pluto-like metaphors abound. The asteroids, dwarf planets, and the Oort Cloud of this disease refract reality. One is left with random manifestations, successions of real-time, and mind-bending ciphers, which serve only to confuse, yet underscore the progression of a beast that attacks without forewarning.
In a recent story in the Los Angeles Times, Alan Stern of the Southwest Research Institute in Boulder, Colorado, said of the Horizon project, "We get an 'A' for exploration (of Pluto), but an 'F' for properly predicting what we'd see...Parts of Pluto are pockmarked with large craters, but there also are vast smooth plains suggesting the petite planet may still be geologically active, which is something scientists did not anticipate and cannot yet explain. That means it was created yesterday on geological time scales."
But how can that be?
The question of Pluto's very existence, its raison d'être, has been debated from the start, as parallel dimensions often are in science, health, and in life. What we cannot discern, we often fear, then deny.
Back on Earth, Dr. Rudy Tanzi, one of the smartest guys on the planet, is working to change that on the Alzheimer's front, which is poised to decimate the Baby Boom Generation, two-thirds of which will be women. Dr. Tanzi is a professor of Neurology at Harvard, holder of the Joseph P. and Rose F. Kennedy Endowed Chair in Neurology, and serves at Massachusetts General Hospital in Boston as the Vice-Chair of Neurology and Director of the Genetics and Aging Research Unit. He's also Chairman of the groundbreaking Cure Alzheimer's Fund Research Consortium, one of the world's top Alzheimer's research initiatives. Tanzi is the antithesis of an under-achiever.
If anyone can unravel the plaques and tangles of Alzheimer's, it will be Tanzi, named one of Time Magazine's Top 100 Most Influential People. Earlier this year, with colleague Doo Yeon Kim, Tanzi created what has been termed "Alzheimer's in a dish"--human brain cells in a petri dish that cultivate the markers of Alzheimer's, making it possible for scientists to discern the Pluto-like features of Alzheimer's and better comprehend countless state-of-the art drugs that might curb this mind-blowing disease.
At a recent Cure Alzheimer's Fund symposium at the Harvard Club of Boston, Tanzi noted that without a cure, more than 100 million people worldwide are expected to have Alzheimer's in the next 25 years, which will bankrupt health care systems. Alzheimer's, he said, is not your grandfather's disease. The buildup of amyloid plaques, neurofibrillary tangles and inflammation--telltale signs of Alzheimer's--can begin when one is in their 30s. It's a slow progression leading to the 10 warning signs:
• Memory loss that disrupts daily life • Challenges in planning or solving problems • Difficulty completing familiar tasks at home, at work or at leisure • Confusion with time or place • Difficulty understanding visual images and spatial relationships • Problems with words in speaking or writing • Misplacing items and losing the ability to retrace steps • Decreased or poor judgment • Withdrawal from work or social activities • Changes in mood and personality, such as chronic depression, anxiety and fearfulness
Alzheimer's, Tanzi said, is not just the end stage, but a journey to the grave, a slow death by a thousand cuts. Chief risk factors, he notes, include: family history, head injury, Alzheimer's marker genes, gender, age, and stroke/emotional trauma. I'm hitting for the cycle on risk factor with a generational family history of the disease, two traumatic head injuries, clinical depression, and the marker gene APOE-4.
"You're not getting out of this," my doctors tell me.
So I try to fight back, stay locked-in as a missile is on target, to slow the progression, while researchers like Tanzi search far and wide, out to Pluto and beyond, for a cure. But "locked in" likewise is a medical disorder in which an individual who cannot speak because of paralysis communicates through a blink of an eye. Some days, I find myself between definitions--using every available memory device and strategy, cerebral and handheld, to communicate. Daily exercise and writing are my succor, helping me reboot and reduce confusion.
I fear taking the foot of the pedal. 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. 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, trying to diminish the risks.
Daily exercise, says Tanzi, is key to reducing risks, the equivalent of at least 10,000 steps a day. A Fitbit should be on everyone's Christmas list. One must also engage in social interaction, exercise the brain daily, and eat healthy--a Mediterranean diet of Fruits, vegetables, nuts, olive oil, less red meat, and Omega-3 fatty acids, Tanzi advises. Sound sleep, at least seven hours a night, is essential, experts say, in shielding and retaining memory.
Strategies as these, along with the need for more funding for Alzheimer's research, are essential in the fight to stay focused and overcome the urge to drift out into the darkness, "wondering, fearing, doubting." On this front, a bipartisan effort by Congress is to be applauded, but we will need every penny, and more, in the future, if we are to slow the pace of Alzheimer's. On the heels of the shortest day, let us collectively shed more light on this demon disease, and give us all something to celebrate.
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 of pieces 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 next year. 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.