Friday, June 7, 2019


Alfred Johnson is not a professional writer. But this former Oregon State Trooper knows how to tell a tale in his book Unmerciful Fog: My Journey with Alzheimer's Disease Dementia. And both of us were commercial fishermen in the Northwest. In 1975, my dad granted me a full share of the salmon catch, in the waters of north Puget Sound. And in the late 1980s, I made good money fishing in Southeast Alaska. For Johnson, it was the coast of Oregon.
There are two subjects that are precious to Johnson. The first is hunting. But since his diagnosis, Johnson has turned a new leaf. Now he enjoys nurturing kittens. Dementia can do strange things to the human brain. I happen to be a churchgoer. But to Johnson, religion is central to his identity. This is when Johnson’s narrative comes fully alive in a big way. And sometimes people with dementia are not reliable narrators. Just weeks after my diagnosis, I was summoned to jury duty. At that time, my mind was still nimble. Those days are long gone. I asked my wife, Paula, if I could serve on the jury, if chosen. Paula quickly shot down the idea. No one with any form of dementia can serve on a jury. The reason, of course, is that jury people have to have to be competent.
The background of this section appears during a hunting
outing. It appeared that Johnson is hunting alone. Or is he? He can hear the highway, parallel to him. Chapter II is quite impressive. The chapter header is The Train Has Left the Station. This is when Johnson’s talents come to the fore.
Johnson had been a big-game hunter for more than three decades. But his tastes have changed. The larger transformation was a deeply religious one. My favorite scene in the book involves Johnson getting lost in the woods. Long before I was diagnosed, I had a very poor short-term memory, and now the idea of being in the woods alone terrifies me. The venue was eastern Oregon, with his friend, Dusty. “During the trip ... the thick dark layer of clouds had descended and obscured the peaks of the mountainous landscape. I scanned the forest for wildlife while admiring the beautiful forest.”
But things did not remain bucolic. According to Johnson, after stalking a deer, he realized he was lost. “After wandering aimlessly through the forest a while, I arrive at a hilltop that provided a good landmark vantage point,” but he then realizes he “had walked in a circle.” He then feels a sensation many people living with dementia will recognize, “My anxiety level rises as darkness begins to engulf me, and I continue the desperate hike toward the sound of the elusive highway. I finally realize that the sound is not highway noise, but rather, the wind blowing through the trees.” Johnson stops and prays at that moment, and gains “a sense of inner strength” that helps him to keep walking on. With renewed hope, he “ponder[s] which direction will most likely lead me to the highway,” and just then he hears an old truck approaching.
Johnson is alluding to Christian doctrine. “When I arrive at the passenger door, the man in pleasant tone, states, ‘My son, walk down the road, the highway is 3 miles, you can’t miss it.’” Johnson interprets the man’s arrival as a sign that “Jesus Christ had answered my prayers to encounter an angel.”
I do have one criticism: Subtle readers should be able to figure out things on their own. But I salute my fellow writer. It is quite an act for a novice writer. And, my sense is that Johnson wants readers, as almost all writers do. But Johnson, I suspect, doesn’t aim for a large audience. His audience is God.

Monday, June 3, 2019

Too many genes, Revised Version

I posted the rough draft of “Too Many Genes” on May 10. Here is the revised post, about Randy and Mary and their family’s experience with Alzheimer’s.

After I was diagnosed with early-onset Alzheimer’s disease in 2015, I was puzzled.  The year before I had been doing research for a writing project about my forebears in the Northwest. Here is what I learned. With the exception of my grandfather, who died in a logging accident in 1940, there was no smoking gun among my grandparents. I hadn’t learned yet that Alzheimer’s can be caused by environmental causes. My dad was a commercial fisherman. One theory of mine is that as a small boy, I often accompanied my dad to his web shed, where toxic fluids were kept in the harbor. That was my theory. But that was irrelevant.
But Randy Garten and Mary Bessmer don’t need evidence at all. Randy’s family tree is riddled with cases of Alzheimer’s, going back to the era when people rarely called it “Alzheimer’s.” His mother and his  maternal grandfather and great-grandfather all had the disease. Randy’s father also said there was some Alzheimer’s on his side of the family, but did not go into specifics. One euphemism used back then was “hardening of the arteries,” as if it was a concern of the heart and lungs. There was a stigma against people with dementia.
Mary said, “I saw stigma within Randy’s family as much as outside. Randy’s Dad seemed ashamed as well as depressed and frustrated by the disease. He was a precise, organized engineer who valued hard work. He saw the glass as half-empty rather than half-full. He would quiz his wife (who had dementia) about what she had for dinner the night before and felt badly that she didn’t remember. He found her repetitive actions without accomplishing anything useful to be a terrible thing.”
At the same time, Mary said,Randy’s Dad did see caring for his wife as his special responsibility and mission. Although he struggled with depression, he managed to care for her at home until the last six weeks of her life. After her death, Dad began to notice some of Randy’s memory lapses and began to fret about Randy having the full-blown disease too, although at that time Randy’s diagnosis was mild cognitive impairment.”
Two years later, during the final year of his life (2016), Randy’s Dad said to Mary privately, “I won’t be able to stand it if Randy has Alzheimer’s like [my wife] did.”  Mary said, “He mourned this possibility and seemed to feel guilty about perhaps giving it to Randy through his own family genetics. Because of Dad’s depression and suicidal ideation, we never informed him about Randy’s Alzheimer’s diagnosis at age 63.”
Sadly, Randy’s dad was clairvoyant, despite his Alzheimer’s. Randy did have Alzheimer’s: Randy himself was diagnosed in 2016, and left his longtime position in the state Health and Human Service Department, working under Alice Bonner in the state administration of Charlie Baker.
But what about the stigma? Over the last two decades, there have been leaps and bounds in understanding this disease. But when a young adult learns that he or she is likely to end up with Alzheimer’s in middle age: That could stress the parent-child relation in a very big way.
Of course, it’s possible that Alzheimer’s will find a cure and the generation of Randy and Mary’s kids could benefit in a huge way. Are you skeptical? Over the last 18 months, there was serious hype about ending Alzheimer’s. And if you are one of those adults whose families has the APOE4 gene: Don’t become fatalistic. Money speaks. And one of these years, there will be a sea-change.