Abstract

Abstract

Wednesday, July 31, 2019

The final blogpost


After my diagnosis of early-onset Alzheimer’s, I knew I had to write about my condition. But how? I soon learned that Greg O’Brien, who lives on the Cape, had written a stellar book about early-onset Alzheimer’s. I’ve met Greg only one time, and the encounter was brief. But his book is essential to me. Greg proved that someone with Alzheimer’s can write at a high level.
Why am I ending my blog? Alzheimer’s is a “progressive” disease. There is no going back to an earlier stage. More important, doing my blog has come to be an arduous task. Or worse.
Yes, I can depend on Paula’s skills. But Paula has other work to do. And I am chary to dump another task on her. And some of you may recall the near loss of my electronic manuscript, after I tipped a glass of water on my laptop, putting me in a funk. Paula was magnificent that day. That’s one reason I married her: supreme calm under stress.
And now that I won’t be publishing my blogposts, how will I fill my time? This should be fairly easy. For decades, I carped about not having time to work on my fiction. Now I will have a chance. Certainly, I will have the time. But fiction is a more demanding genre. My last book was a collection of essays, focused on commercial fishing in Puget Sound and Southeastern Alaska.
There was a time that my fiction writing was the center of my universe. Here is an example. In 1989, I was preparing for my “comps”—short for comprehensive master’s exam—at Northeastern University. While other students had diligent plans to ensure they pass, I flippantly roared through the test. Why the rush? Elementary, dear Watson. I hoped to get back to Somerville, so I could write a page or two of my novel when I got home.
This time around, things are different. I recall a Northeastern classmate suggesting that I was faintly obsessed with my book, and he was probably right. O, creative youth, make your imprint before life hardens into obsidian.




Thursday, July 25, 2019

Middle stage


What does the middle stage of Alzheimer’s feel like? Let me be your guide. This past week was a hard one. It started with high hopes. For the fourth time, I was looking forward to participating in the End to Ride Alzheimer’s. By now my friend and riding partner, Matthew Abbate, were embarking for the fourth year in a row. I had reason to expect that things would similar. Each year was different.
Our first year, I was asked to make a short speech on the eve of the Ride. I spoke about my early love for cycling, and cycling through a dangerous May storm in 1979 in the Cascades. But this year, my fourth Ride, was a first. What happened? I am still figuring it out. It appears that there was an important gap in certain spaces, like in the Nixon tapes. The same process was going on in my brain. The ocean was on my left. As long as I still could see the shore, things were normal. What I was looking for was the entrance to the woods. In other years, I felt tranquil. But this day, I was agitated.
In other years, I looked forward to the food stations. We were probably within fifteen minutes of the first food station. But we were too slow. I had to pull over into a parking lot, feeling dizzy.
What else has changed?  This is a big one. Month to month, I have to be careful when I walk around Somerville. This first came to the fore in a big way in spring 2017. At that point, I was still firmly in the early stage of the disease. Overnight, I realized that I must be much more careful in public alone. Back when the Red Sox won the World Series in 2013, I was confident to go to the celebration parade alone. But in the very recent World Series (2018), I concluded that I would be a fool to plunge into the crowds. Another distinction is the decline in small-motor skills. The first time, in 2016, I had no problem pinning my ID. But in recent years, I had to ask for help.

Recently, I was one of four panelists high up in one of Boston’s highest buildings. With scudding clouds passing by, the topic was dementia. Each panelist had some form of dementia. A decade ago, dementia was not much discussed. I’m sure that talking and learning is at an all-time high. To me, this was quite novel. I have been on several panels. But having four panelists with dementia was a wonder and a joy.
And what about the “fog”? That was the topic of a recent book, from a novice writer. For me, fog is not a major concern, at least for now. What did strike me was a visit to my Mom’s care facility north of Seattle in 2013. At that time, I was already showing signs of cognitive decline and worse. Then I saw a man, quite demented.
 He seemed out of Greek mythology. He was half-naked. I could infer that he was quite demented. Later, I could infer that the man was at the final destination. Thus did my first lesson in dementia studies conclude. I pitied him. He must have been very dizzy. But at the time, he also disturbed me.
And these days, I have to be careful when I walk alone. That is my biggest vulnerability these days. So, I make a point to walk only on familiar routes.

Tuesday, July 16, 2019

Winding Down


 When I got my diagnosis in June 2015, the only thing I knew about Alzheimer’s was that there was no cure. But I was eager to learn. Vaguely, I began to learn about the disease. One painful error was the relationship between Alzheimer’s and CTE (chronic traumatic encephalopathy).
There were distinct pathologies. At that time, I was in touch with Steve DeWitt, a former high school football player. Both Steve and I played high school football in Bellingham, Washington. For a year or so we both thought we had head trauma caused by football. But we were playing in the wrong arena. Somehow, we both conflated Alzheimer’s with CTE, a much more fearsome adversity. So, stumbling as we walked, we began to understand the real opponent: Early-onset Alzheimer’s. Then something sad occurred. Steve began to slow down. This process, of course, was irreversible.
And now, I am slowing down. And Steve is having a very hard time.  My goal is to get my book about Alzheimer’s in print sometime in 2020. But this is not a race.  And without my wife, Paula, there would no book at all. Her copy-editing and proofreading: those skills used be mine as well.
What can I do to help? Channeling the Hippocratic oath, do no harm. In the early years of the blog, I didn’t need a lot of help, other than Paula’s proofreading. But during the last two months, things seem to be cratering. The Evich men—my late father, my brother, and I—have dealt with anxiety.
Now, I am confronting the “fog.” This is fairly common with Alzheimer’s. Recently I reviewed a book largely on this phenomenon. Several years ago, I was visiting my mom at her assisted-care facility. It was the first time that I saw someone with obvious dementia.
He seemed to float in the room, like something from Greek myth. Did he stuff cotton in his ears? His journey was almost done. But we mortals must cherish our time. Turn off your phones, and tend to your souls.



Friday, June 7, 2019

Fog


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.

Friday, May 10, 2019

Too many genes


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. The couple’s tree is riddled with cases of Alzheimer’s, going back to the era when people rarely called it “Alzheimer’s.” One euphuism was “hardening of the arteries,” as it was  a concern of the heart and lungs. As Mary put it: “I couldn’t stand Randy’s dad in his final months. And he said, “Randy will have it too.” Sadly, Randy’s dad was clairvoyant, despite his Alzheimer’s. Randy did had Alzheimer’s: Randy himself was diagnosed in 2016: Randy left his job from his longtime position in the state Health and Human Service Department, working under Alice Bonner in the state administration of Charlie Baker.
For families like Randy’s and Mary’s, it can be difficult to unravel to understand the relationships. After all, genealogy can span beyond a century or more. Who was “Big Al?” Did his name suit him?  And what about Maurice? Might
that name still in currency? 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 Alzhiemer’s will find a cure will find in the generation of Randy’s and Mary’s kids 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 of those one 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.
The Mediterrean Diet is not some fad.  The evidence is in.  And it does have its drawbacks. Many people can’t  the taste can’t abide, even when herbs like rosemary or thyme. And, if you are fairly heathy, walking is a simple way to improve one’s mood.  Just remember, if you are walking on your own, you better be familiar with the route. Cellphones can literally save lives, but if you don’t charge your phone battery,  you can end up like I did: Having my college-age son bail me out. The result would have been impoundment in the nation’s capital. How priceless would have  that have been?

Friday, April 19, 2019

Comfort zone


As I go around my days, I am usually careful when I sense that I might be moving into unfamiliar places. In Somerville, where I have lived for decades, it would be difficult for me to get lost. Not long after my diagnosis, I started doing a very simple 30-minute walk. I start from my home and walk in a rectangle until I am back on my street.
There are other walks, embedded in my long-term memory. One is more challenging. There is a sky bridge, over Route 28, which connects east Somerville with the rest of the city. I hadn’t done it recently. It takes me into Boston. But the path ends at that point. Another route takes me past Tufts University, where Paula studied in the graduate English program. I don’t have to think about where I am. 
It’s a good 70-minute walk, overall, comparable to the route of The Walk to End Alzheimer’s fundraiser. Foolishly, last September, I did the Walk, despite having a deformed sole on my right shoe. It was months before I could walk normally without pain. Another route of mine follows Massachusetts Avenue, which is my umbilical cord. Sometimes I need to relieve myself. And let’s just say that my prostate gland is not what it used to be. In 2o16, at the end of a vacation in Puget Sound, my cousin’s husband had cooked up a vat of steel-cut oats. I love steel-cut oats. They are very nourishing, and I aim to cook them once a week. But I have to be careful. Like my dad, I struggle with my prostate gland. I know from experience that it can be serious. But that morning, I didn’t take into account the Seattle-area traffic. If I was on a bus, the bus would have had a toilet. But I was riding in a van. One woman on the van offered me an empty plastic bottle to collect my urine.
There probably would have been a toilet along the route. But the van lacked that service. We were on Interstate 5, heading toward the airport. Remember those O.J. Simpson commercials running through airports? That’s what I was doing in that early-morning dash to find the first restroom. My goal: don’t wet myself. Goal fulfilled.
What about cooking? Over the last week I was alone in our house for a few days, while Paula and our daughter were away. I had dinner with friends every evening, and the first few days, I made canned sockeye salmon sandwiches for lunch. Canned salmon can be fairly costly. The dressing I make is from scratch: olive oil and a smaller volume of balsamic vinegar. And there was an incident, but nothing came out of it. I was eating my five-minute oatmeal at the time. I received a landline phone call. It turned out to be from Paula. In any case, this incident was barely worth reporting. The electric burner was cherry-hot, but that was no great concern. I removed the pan from the burner and shut it off.
 What about going though security at airports or government buildings? I still yearn for my tan leather jacket, which I lost in 2o15, not long before my diagnosis, and I suggest my jacket is now the property of some airport employee. And in downtown Boston, a couple of years ago, I encountered a guard who seemed to want absolute proof that I had dementia. Who can say? Unless the person is acting in a strange manner. Only in the late nursing-stage do people with Alzheimer’s display typical symptoms: vacant stares, dizziness. And there are two activities that can be enjoyed to the terminal stage: Art and music.