On the eve of predictable year-end budget debates on Capitol Hill and subsequent holiday celebrations, the tilt of the earth 23.5 degrees from the sun will soon summon 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.
As the sun hugs the horizon on the shortest day, there is no celebration for those of us diagnosed with Alzheimer’s or various other dementias. We stand still in the darkness. For all creatures of the earth, nothing is as fundamental as daylight, which blooms new memories and sheds light on life itself. The darkness, though, is numbing; isolation warps the mind.
Medical experts term this “sundowning,” increased uncertainty and agitation as light fades to black, a time of greater rage and mood swings in the shadows of the mind.
I know firsthand about the shadows of the mind. Alzheimer’s stole my maternal grandfather and my mother. Several months ago my paternal uncle died of the disease, and before my father’s death, he also was diagnosed with dementia.
Now Alzheimer’s has come for me.
About six years ago, I was diagnosed with younger-onset Alzheimer’s after experiencing the horrific symptoms of short-term memory loss, inability to recognize individuals and places I’ve known all my life, difficulty completing simple tasks, terrible judgment, confusion with time, place, withdrawal, and challenges with problem solving and spatial relationships. A battery of clinical tests, brain scans, and a brain scan confirmed the diagnosis, which doctors say was accelerated by two, serious head traumas that “unmasked a disease in the making.”
I also carry the Alzheimer’s risk gene APOE-e4, which appears to be on both sides of my family. My diagnosis came just two weeks after being diagnosed with prostate cancer, which in consult with my doctors and family, I am not treating. It is my exit strategy. Without a sure cure on the horizon for Alzheimer’s, I don’t want to take my wife and three children to that final stage—a place of devastation and sadness, of individual loss of self and the ability to communicate. I’ve been there before with family.
Today, 60 percent of my short-term memory can be gone in 30 seconds. Daily medications serve to slow the progression of the disease: 23 milligrams daily of Aricept and 28 milligrams of Namenda, the legal limits, 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 that moment I can’t remember how to dial, or when I smash the lawn sprinkler in summer 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 because I thought it was a good idea until the skin melts in a second-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 beginning to fade.
Years ago as a journalist, I thought I was Clark Kent, Superman, an award-winning reporter who feared nothing. But today, I feel more like a baffled Jimmy Olsen. And on days of muddle, more like a codfish landed on the dock.
A fish rots from the head down.
This could be your story some day or the story of a loved one. Please don’t assume it won’t. There are more than five million Americans living today with Alzheimer’s, a number expected to triple by 2050 at an annual cost of care expected to exceed $1 trillion, far more than cancer and heart disease, now on the decline.
In a critical, much needed bipartisan effort—thanks to the leadership of Republican Sen. Roy Blunt of Missouri, Democrat Sen. Barbara Mikulski of Maryland, and Republican Sen. Susan Collins of Maine—the Senate has recommended that federal funding for Alzheimer’s research be increased by $350 million in Fiscal Year 2016. It’s imperative that Congress approves it.
We will need every penny to slow the pace of Alzheimer’s. So as we approach the shortest day, let us collectively shed more light on this demon prowling like Abaddon, and give us all something to celebrate.
Greg O’Brien, a career journalist, is a member of the board of UsAgainstAlzheimer’s. He is author of the international award-winning On Pluto: Inside the Mind of Alzheimer’s.
Greg O’Brien is author of On Pluto: Inside the Mind of Alzheimer’s, the first book written by an investigative journalist embedded inside the mind of Alzheimer’s chronicling the progressions of his own disease. He is a member of the Board of Directors of UsAgainstAlzheimer’s.