Abstract

Abstract

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.

Friday, April 12, 2019

$290 billion


 This was not the first time that Paula and I had traveled to Washington to advocate in the nation’s capital on behalf on Alzheimer’s and other forms of dementia. But this time more was as stake. In 2016, most people assumed that Hilary Clinton would be our next president. More important, in terms of health care, Clinton would have continued “Obamacare,” or something very similar. Instead, we got a president who has seemed at times to barely know his own mind. For Paula and me, the stakes couldn’t be higher. And that’s why when Paula spotted Senator Susan Collins, Paula immediately engaged in a discussion about health care. Keep in mind  that Collins is an endangered species: A moderate Republican. That wasn’t the case a generation ago. But over the decades, polarization has taken its toll.
And the real topic in Washington recently was the number of people who advocated on behalf of Alzhiemer’s disease. Under the banner of purple, Republicans and Democrats, engaged with lobbying. Elizabeth Warren made an appearance, but made no political message. At one point, Warren reached out to us with a handshake and a hug.
And if you want to know about everything about Alzheimer’s and other similar diseases, this is where you go: The 2019 Alzheimer’s Disease and Facts and Figures. If you want to get a copy, I suggest you that you reach out to your local Alzheimer’s chapter to
Here is a huge fact: Hours of unpaid Care and Economic value: more than more than $18.5 billion. Why women? The pat answer is, women have always done the dirty work. And I do mean dirty. When my dad was dying at age 86, from congestive heart failure, it struck me that his death was a rather clean death, compared to what I should expect for my own demise. But dying without my marbles is deeply discouraging. But that’s what Alzheimer’s has dealt. And that is no surprise. I am fortunate to be where I am. Sure, I will probably die a dreary death. But, I have been told that Alzheimer’s is a relative painless way to die. And that is probably true. But certainly, it won’t be a noble death, like dying in the battle of Austerlitz. No, we have to move into farce to fully appreciate this disease. Do you see Woody Allen being shot out of a cannon? How clever! The man who fears everything. That’s what living with Alzheimer’s is like. Absolut farce.

Tuesday, March 12, 2019

Homage to Pat Summitt


As many sports fans know, Pat Summitt was an amazing basketball coach. Scanning Wikipedia falls short to explain how successful Summit really was. Yes, she won a silver medal in the Montreal Olympics, as a player, in 1976, but her destiny was to become one of the greatest basketball coaches of all time. Over the decades, the championships kept piling up. You would have to go back to the era of John Wooden at UCLA when to find an apt comparison. From the early 1970s, to find a coach who was so fabulously successful.  Better to recall the good days, when her players—most of them—adored  her. Why wouldn’t they. Sure, there must have been rivalries among the players, but that is typical.
But here are some  examples, from Coach Sumitt. Candace Parker was the star of that team, from 2004 to 2008. Parker also was the first women  to dunk in an NCAA tournament.
Summitt had several sayings.
Attitude is a choice. What you can think you can do, whether positive or negative, confident, or scared, will most likely happen. In a more aggressive stance, Summitt would say, Here’s how I’m going to beat you. That it. And finally, It’s harder to stay to on the top than it is to make the climb. Continue to seek new goals.
And keep in mind that Summitt was living with the disease, without knowing it. And it seemed that her case had moved fairly swiftly. What a shame. She was diagnosed in 2011 at age 59. What  a terrible loss . Others have gone on to live in with many years in relative good mental health.  Pat Summitt was robbed.  But she would not have put it that way. After all, the team is called the “Lady Volunteers.”

Also in the spring edition is a feature about myths about Alzheimer’s. Progress continues, but there are still pockets where some people are in denial. Accordingly, ALZ has published a “myth or fact” feature.
The most misleading of the “facts” is that Alzheimer’s is just another part of aging. Even doctors, in the early years of the 21st Century, most doctors thought that senility was a normal process of aging. And even more hoary was the claim that one could not die from Alzheimer’s. The next “myth” is close to my heart. “Only old people get Alzheimer’s.” Well, I have been writing a book about early-onset  Alzheimer’s over the past several years.
At least the myth about aluminum can sounds plausible. But there is no evidence whatsoever that flu shots can contribute to dementia. The last “myth” noted is more subtle: “It would be wonderful if a particular food or supplement could delay or prevent Alzheimer’s disease, but we do not have the science evidence that these claims are true. “We need clinical trials to evaluate whether any food or supplement will have…It is unlikely that one food or supplement will have a significant supplement. The Alzheimer’s Association encourages everyone to eat a healthy diet and balanced.”
Also in this issue, Candace Parker, one of the great women’s college basketball teams, leading to the Ladies Vols to two championships. Then came the devastating news: Summit was diagnosed with early-onset Alzheimer’s. There are about 200,000 cases in the United States. But back to back are two features. The first one is “Ask us.” The writer asked this: My 78-year sister hasn’t been herself. Her house has always really neat and tidy last time I visited it was a mess! It didn’t look at all at the place she for more than 50 years….I’m worried something more is going on.”
And here is the reply: “As someone who knows, you are right to be concerned. When there are distinct changes in a person’s behavior…With that said, it can be difficult to approach someone with your concerns and recommendation. Sometimes people may not see changes in themselves. If you are holding this magazine in your hands, you can just look at the next at page. The title is “10 steps to memory concerns:

1.    What’s the person doing or not doing ordinary?
2.   What other health or lifestyle could be a factor
3.   Has anyone noticed the change (or changes)?
4.   Who should have the conversation? Important!
5.   What’s best time and place?