Friday, December 28, 2018

AIDS in the eghties

Not long  after I was diagnosed with early-onset Alzheimer’s, a gay  colleague of mine invited me to have lunch in Boston’s Italian North nd. During our lunch, I asked him if he ever lost someone to aid to AIDS. My colleague was frank. He told me that he had been involved with an older man who died soon quite soon after  the affair. My aim was to compare Alzheimer’s to AIDS. But the comparison struck as  too facile.
This topic almost fell into my lap. I was walking close to where I live, and someone was giving away books. The one I took home turned out to be a gem. Personal Dispatches: Writers’ Confront AIDS. My favorite by far was The Fear. And why not? 1987 was the year, but know one knew when a breakthrough, if ever. The challenge  was compared to curbing the Great Influenza in the second decade of the early twentieth century. But there had been litle or none stigma to the flu. AIDS did. Here is how Holleran described the scene in 1987: “The Fear among homosexuals is personal, physical and real. It is easy enough to dismiss the idea that the CIA set out to exterminate homosexuals; it is not easy to dismiss the fact—having lived in New York, before during the seventies as a gay man—one can reasonably expect to be infected.
This was the zeitgeist when this book was published. Pat Buchanen, a longtime right-wing pundit, called for a quarantine in one particular community in Florida, presumably with a high density of gay residents. But as Holleran wrote at the time, “Even with the homeosexual community, however, there was despicable behavior: men who would not go to restaurants, hospital rooms, wakes” or other such venues. The Fear among homosexuals is personal, physical, and real. It is easy enough to dismiss the idea that the idea that the CIA set out to exterminate homosexuals; it is not easy to dismiss that—having lived. In one of Holeran’s most vivid
War. At one point in this brilliant essay, Holleran states, “The Fear is a god to which offerings must be made before sex can commence. Sometimes it refused it…Even safe sex leads to the question…Sex and terror are twins. Death is a hunk…and loathing…This remarkable essay ends from an invocation from Jonathan Edwards, the eighteenCentury preacher who wrote the sermon, under the title “Sinners in the Hands of an angry God.”
And I was glad to learn that Andrew Holleran had survived the plague of AIDS. What a fine writer he is.

Friday, December 21, 2018

Too many layers

Jeff Kramer and I have been friends since we met on the Western Front, the campus newspaper of Western Washington University.
A decade later, Jeff almost perished in the 1991 riots in Los Angels, working as a stringer. I remember getting my copy of the Boston Globe the next morning wondering if my closest friend had perished overnight. Perhaps he was paralyzed below the belt? That were my musings on that terrible night. Much later, my own health crisis commenced, slowly, almost unperceptively.
On a recent winter day, Jeff and I embarked on a leisurely bike ride. I spent a good deal of time planning how many layers I would need. My spandex tights came first. Then came my padded trunks.  My simple goal was to be not too cold, not too warm. Would that be possible? Early on, I was quite comfortable, and I was congratulating myself for taking the time to wear the correct numbers of layers. I had started with my purple Under Armor, a gift from the Alzheimer’s Association. Next came a cotton maroon pullover. After that, I put on my black fleece jacket. For my shell, I was wearing my Seattle Mariners’ warm-up jacket.
A person free of dementia would have had no difficulty to find all the objects that I had needed. Of course, I would bring my phone, and stow it in the spandex pocket that is designed for that purpose. Another must-bring item, of course, was my keys. Without them, I would have no way to secure my bike if we stopped for a break. After my former bike was stolen in 2o15, Jeff bought me a high-quality replacement U-bolt lock.
Whenever I ride, I make a point to be able to feel where my keys are. I also usually bring a Cliff Bar, a compact source of energy. This is more important in the summer, but I was still glad that I had the Cliff bar I took with me. So far, everything was going well. Jeff and I were riding at a leisurely pace in the afternoon sunlight. Early in the day, we thought about riding all the way to Bedford, a 22-mile round trip. When dusk was settling in, Jeff suggested that we stop at the next café.
 The difficulties emerged when I had to get off my bike. Even in summer, I sometimes need a minute or two get the correct angle to  secure my U-bolt. But in the darkening bitter afternoon wind, I was getting seriously confused. Jeff was asking reasonable questions, but I wasn’t providing cogent replies. I was looking for my reading glasses, but at the moment, my glasses were irrelevant. And I would have been better without them. I might have been better off without them. The frames kept snagging on other objects. But once Jeff led me into the café, I starting thinking logically again. And Jeff made a point of cooling off the beverage before I quaffed it.
We entered a coffee shop. Jeff got me a hot chocolate, with whipped cream. Normally, I try to avoid refined sugar, but on this day I quaffed the warm chocolate as fast as I could. Jeff also made sure that the coca was temperate, not scalding. But other things awaited us. For weeks, I was planning to check my batteries for my bike headlight, but I never got around to it. And I didn’t realize that my red tail light was functioning. All I had do to was to turn it on.
But because I was literally in the dark, I couldn’t see it on top of my helmet. At a CVS on Massachusetts Avenue in Arlington, I waited for Jeff to buy replacement batteries for my bike headlight I stayed out  to be with the two bikes. Once we left the store, we picked up speed, thanks to the downward gradient. By now, the sky was inky black. I knew we were not too far from Spy Pond in Arlington. I could see the bike lights in front of us in the dark. I knew the bikepath was far enough away from anyone ending  up in the pond. I was confident that the bikepath had enough ambient light to discern other cyclists. I was mistaken. I could discern that the pond was not a hazard. But a few minutes later came the collision. No, better to call it a soft-landing. No one fell over. A male’s voice. Startled, and angry, but not injured. I was already riding toward back to him, to see if he was hurt. He wasn’t. And I was glad that the other rider didn’t make a big thing of the incident.
And if you are planning to ride at dark in winter this year, don’t do what I did. The last thing I wanted to be on my conscience is some stranger’s concussion. Or, perhaps, a lawsuit.

Tuesday, December 18, 2018

An American orginal

I hesitate to pour acclaim on a such a talented young writer, Nana Kwame-Adjei. Sometimes it’s better to learn the fiction craft out of the  literary spotlight. And don’t be fooled by the exotic name. He is an American original. In the same way, say  Saul Bellow, was an original. But Bellow didn’t had the range that Adjei-Brenyah has, as these stories show. And in the first story, “The Finkelstein 5,” Adjei-Brenyah shows he that he can pull off the kind of acid satire that Jonathan Swift specialized in the 18th Century. I am thinking of  Swift’s story, “A Modest Proposal,” in which the narrator suggested that to end a food shortage, people should  consume babies.
The first story of Adjei-Brenyah starts with Emmanuel a young black man hoping to get into a  job interview. He has been modulating his telephone to hide that he is black. Using a one a ten-point scale, he manages to get it down 1.5. “Hi, there, how are you doing today? Yes, yes…If he wore a tie,” and he used his indoor voice he might be invited to an interview. For some time, he practices  to get his telephone voice so he can sound like a white American. In the best days, he manages to get his telephone down to 1.5. But soon the story careens into a court of law. For Kafkaesque reasons, a white character of the name George Wilson Dunn is on the stand.
Because the entire court was filled with white people, and the court is in South Carolina, “the court had ruled that the children were basically loitering and not actually inside the library reading, as one might expect of productive members of society…On one side of the broadcast world, anchors wept openly, for the children, who were saints.” I will just say that this story couldn’t be made into a movie: too gory. And the innocents come to a terrible end, in a rather “splashy” ending.
“The Era” is another one of my favorites of stories The scene is a high school history lesson, perhaps 50 years into the future. The teacher, Mr. Harper, the history teacher, has given this lecture many, many times. His students learn about before the Turn, which is not explained. Students are learning about the Big Quick War, which came after the Long Big War.” Readers learn that this has been going on for decades. An important innovation for students is to have a chip implanted into their brains.” Some students are “clear-born.”–what our era would call “challenged.” “And since I’m a clear-born,” third look while they can they look.” But even staring at the videos and pictures are better is than I can do,” according to this very slow reader.
“Lark Street,” the next story, could not be any more different than the previous stories. The couple is divided. It’s not just they are divided. The woman is expecting twins. As is typical in such situations, the guy is usually more ready to abort the fetus. The story opens with a striking image: “an impossible hand punched my earlobe….It’s a metaphor, Daddy, said in a new voice….She plopped down so she was sitting beside. At the end of the story, the young woman (or teenager?). The ending is a stunner.
“In the hospital where” describes a rather distant father-son relationship. The father is slowly dying, and to pass the time, he looks through his son’s writing. “What are you reading?” the father asks. “I don’t know,” the son replies. (I love that line.) A moment later, the son comments, “It felt like I was announcing I was for some huge office as a Green Party candidate…His curiosity stunned me.” For the first time, his dad, slowly dying, for the first time.  And the son’s reply was, “I don’t know.”
Male writers tend to end up writing about their dads, often after they are gone. Drawing on imagery of “of the Twelve-tongued God…Still, I craved more tongues, new worlds to live in new worlds in. I loved. I was very lonely.” It’s hard to miss the phallic overtones, while his dad continues to decline.
The last of these twelve stories is the most powerful.
When I realized that this story was about a random shooting at a college, my hopes sunk for a time. Don’t we have enough crazy people ready to get their fifteen minutes of infamy? But I was wrong. Once the shooting is over, the story sings. The first bit of important information is that the guy is an outcast. That tends to be typical with school shootings. In this fictional version has a mordant touch, the shooter wasn’t even welcome at the local “Free to Hate rally.” But it turns out that the guy known as Fuckton is actually someone else. When things get going, it turns out that a guy named as Porter was the killer. In the meantime, a celestial comedy commences.
But no one forgets that terrible violence caused by the shooting. As Adjie-Brenyah notes. “There’s a shriek, and Fuckton looks around…The face is so broken. It terrifies him. There’s blood everywhere. On his lips, in his hair.” In a comic vein, Deidre comments,” Just die already!’” Deirdra says, the tips of her horns igniting.” “Dang.”  goes on. “Transcending is like a tryout.”
On the last paragraph of this remarkable collection of Adjie-Brenyah closes, “Even the apocalypse isn’t the end. That, you could only when you’re could. And if you are alone, posed like a dancer, when it comes, and you are with your family or anyone at all, when it comes, you feel silly and scared, but at least not alone.”

Friday, November 30, 2018

Use it or lose it

At some time I learned to tie a necktie. I recall going to a photograph’s studio, ahead of my senior year of high school. As my family knew, I rarely smiled on command. And back in eighth grade, the girls who hanged out with me found me “too serious.” By the time I was ready to enter my final year of high school, my studio portrait showed me as a brooding eighteen-year-old. All of my life,
I have been intense.
Why did I bring this up? Because if you have early-onset Alzheimer’s, it’s worth doing anything to slow down the disease’s progress. Just a few days ago, I had seemed to have lost my ability to knot my tie. In retrospect, I probably overreacted. There were other times that it took me very long to make the knot. But this episode is the one that spooked me. When I said “spooked,” what I really meant, was this was the longest time I went between not dealing with my neckties.
And, culturally, the necktie has been on the wan. Back in 1984, when I was in my first full-time reporting job, I was expected to wear a tie even in sweltering humidity. I recall one of the local officials in the town being surprised that my editor expected me to wear a tie in such oppressive conditions. But the question is how often should I tie my? Every three days or four days? That would seem reasonable. But there are other realms in my life  in which I want to maintain. Just a couple of days ago, I was struggling to insert my lap and shoulder strap and lock me in. This, of course, is the way that toddlers are handled by their parents. And I need go back to the 2018 Ride to End Alzheimer’s, when I realized that that I was struggling to pin my ID number. I had to ask my riding partner, Matthew Abbate, to fulfill that this task. This is an example of the failure of my small-motor skills.
And in the years ahead,  I will be busy cataloging  my symptoms, until the lights start being turned out, one by one, until I approach that dark realm, my facilities steadying waning. My projection is that I will live for many years, on account of my good physical state. Most likely, “aphasia,” the loss of speech, or the inability to understand speech, will be my final destination, preceding death.

Friday, November 2, 2018

Learning to speak

When Joanne Koenig Coste published her book, Learning to Speak Alzheimer’s, in 2003, most doctors still regarded the condition of a natural progression of aging. The foreword of the book, written by Dr. Robert N. Butler, made clear that Alzheimer’s had its own pathology.
 “Up to that time “senility” stood for all forms of dementia, from standard late-onset form, and the panoply of similar dementias, including frontotemporal dementia and Lewy b0dies disorder.
Koenig Coste learned the burdens of Alzheimer’s first hand when her husband became afflicted with the disease. Support groups were rare. As early as 1971, Koenig Coste’s husband was showing obvious  signs of dementia. Of course, few people were calling the disease by Alzheimer’s disease. One durable euphuism was “hardening of the arteries,” making the disorder sound like a circulatory problem. Koenig Coste herself at the time, described her husband’s as innocuous. But two years later, a major stroke incapacitated Koenig Coste, throwing the family’s finances into chaos, “replacing Brooks Brothers suits with sweatshirts, which soon were stained with food.”
The burden was too much for her. The family was a large one, and there were children spaced out in regular intervals, four in all. “My husband kept opening the door to go outside—as if to escape from what from what was happening to him….I realized I had to act—proactively, positively and, immediately.…before my husband and son got lost.” At that point, Koenig Coste, drew up a plan. Features included securing the house, for both the young children in the home, as well Koenig Coste’s husband. Another set was termed of rules was titled “Know That Communication Remains Possible.” Another commonsense approach was termed, “Focus only on Remaining skills.” Koenig Coste noted, “Help the patient compensate for any lost abilities without bringing them to his or her attention. Another significant tenet was, “Live in the  Patients’ world—a variant of “the customer is always right.” And during this era, she was raising four children, ranging from four to sixteen.
In an early chapter of Koenig Coste’s book, she dramatized a confrontation between a young nurse and a patient, Mary. The nurse, Claire, called for help. “For the rest of the morning, the staff restrained Mary with an antipsychotic drug.” These days, most nursing homes use the technique of “reality orientation.” The rationale was quite transparent. Sadly, “the primary effect of forcing Mary to ‘face the truth’ of the death of her mother’s decades ago, led to an escalation to in her negative behavior. And just to be clear, let me define “habilitation”—an approach to caring for a person with some form of dementia. “Dignity intact, free from medical or chemical restraint, Mary sat back with her coffee and awaited for her friend’s arrival. Thoughts of her mother faded.
Under a header, “Focusing on What Remains,” Koenig Coste commented, “Family members often reported to the doctor or nurse what is called ‘excess disability.” What does this mean? In the parlance of Alzheimer’s, this problem, according to Coste. Most relevant for me is Chapter 5, which is titled “Seeing the World from the Patient’s Perspective.” After all, her husband died from the disease without much resistance at all. But what separates my experience Koenig Coste’s husband is a vastly different experience. One, exceedingly swift, like quicksilver; the other plodding. In chapter 3, the focus was on developing a care plan. One item included, “Is the person with Alzheimer’s doing well? Having regular sexual intercourse, if desired?” Under “ Social,” Does the person seem well-balanced?” Is the person’s emotional and spiritual needs being met,” in or out of a church or other house of worship? As Koenig Coste puts it, “Spiritual needs may range from attending religious services to feeding the birds: whatever spiritual sustenance maintained her before the disease began.”
A key word for this book is habilitation, defined as an approach to caring  for a person with dementia in a progressive way. But keep in mind that this book was published in 2003, more than fifteen years ago. So, some things may be somewhat dated. But what the author did, back then, is remarkable. By documenting patients’ behavior carefully in a thorough fashion, the author collected clues that would illuminate the next generation of caregivers and care partners—the  world of Alzheimer’s that my cohorts and I are living in today.

Friday, October 12, 2018

Reading comprehension

About fifteen months after I was diagnosed with Alzheimer’s, I attended a going-away party for a former colleague at the Massachusetts Municipal Association, who had taken a job as the town manager in Amherst, Massachusetts. Another former colleague asked me a pointed question: “Can you still read?” I answered her immediately, noting that I was writing a weekly blog about Alzheimer’s. But her frank question made me think. It was the first such question that I had fielded. I turned around the question to ask myself, How long will I be able to read?
A simple answer is elusive. In the basic sense, a Stop sign is a very important sign. So is a crosswalk. During the eighteen months I worked in the Waterbury, Connecticut, area, I reported on a gruesome neck injury. Because the authorities had failed to replace a Stop sign in a timely fashion, a man broke his neck. But more broadly, of course, I am talking about the challenges of decoding what we call reading and writing. I am drawing on two accomplished writers who don’t have much have in common: Ron Chernow, an acclaimed biographer of George Washington and other founding fathers, and Don DeLillo, best known for novels that seem to portend the near future. DeLillo’s sprawling masterpiece Underworld was published in 1997, four years ahead of 9/11. The original dust jacket seemed to portend 9/11. The twin towers still stood. An old church stood in the foreground.
Of the two writers, Chernow is much more accessible. He is first a historian, but also a gifted storyteller. As I was reading this tome, I realized how little I knew about George Washington. As a young officer in the French and Indian War, he almost succumbed to dysentery. And two decades later, the scene in Valley Forge is downright horrible. Many of the soldiers didn’t have boots, and spores of blood littered the ice and snow. There are other gruesome scenes in this section. Lafayette, the French officer who led France to intervene on behalf of the colonies, ended up in a ghastly dungeon in Revolutionary France. Incredibly, he survived to meet George Washington after the war was over. At certain times I found myself skimming some portions. And that is not Chernow’s fault.

 Pre-Alzheimer’s, I only skimmed if I found the writer boring.
DeLillo’s The Names is only about 340 pages, but it is the opposite of a fast read. I decided to peek at the original review in The New York Times, which appeared in 1982. The reviewer described the book as a “brilliant, ultimately rather elusive meditation on America’s place in the world.”
First, it is a work of fiction, but not a mainstream fiction. Some of DeLillo’s novels are dark comedies, and White Noise is probably his most popular book, on account of its dark comedy. But The Names was the book that made him a prominent writer in 1982.
Here is an example from the book, depicting a chaotic scene in Tehran at a time when Islamic radicals were clashing with secular protesters: “As hundreds of thousands of people marched toward the Shayyad monument, some of them wearing funeral shrouds, striking themselves, with steel bars and knife affixed, David was hosting a Chain Day party at his house in North Tehran, an area sealed off by troopers and tank barricades. The partygoers could hear the chanting mobs here but whether they were chanting ‘Death to the Shah’ or ‘God is great,’ and whether it mattered. ... The drivers were in free form.” And then kicker: They did not reduce speed when driving in reverse.
In another scene, the main character muses about his disappointment that his funeral will not be televised. Someone else, casually, asked, “do you film the murder?’”
“The other person says, casually, “Eat your eggs.”
“You haven’t thought that far ahead?”
“There won’t be a murder. No one gets hurt. At the end, they raise their arms, holding up the weapons.” One character is an experimental Western film director.
In the same conversation, the Manson cult is brought into the conversation. This makes sense, because the key plot point in the book is a cult murder. “They’re adding material to their public dream,” one of the characters remarks. “They want to vault into eternity.”

But the original question stills hovers over me: How long will I be able to read the printed page? And I do mean “print.” Reading a book on a screen would further drop my reading comprehension. Before I bought a copy of The Names from my local bookstore, I had started reading an old copy of the novel from a library. These days, I often mark up my books quite a lot. It’s the only way to keep my focus when I am reading. But I try to be nice to my paperbacks. Sometimes, they’re in a poor condition, and I always refrain from using ink. Mechanical pencils are a better option.

Friday, October 5, 2018

Beware of screens

About a year ago after I arrived in Waterbury, Connecticut, I covered my first murder story. It was literally “a dark and stormy night.” I did not work in the main office. I shared a bureau with another reporter, about a ten-mile drive from Waterbury. My bureau partner was covering something much more pedestrian, almost certainly some tedious meeting that would go on for some time.
I was in touch by phone, of course, with my editor in Waterbury. Then lightning struck, and our bureau lost power. Moments later, I got a phone call from Chuck Dixon, my editor. Chuck was a throwback. It didn’t seem that he got much exercise. He drank quite a lot, favoring the hard stuff. He liked to play poker. And he was a good storyteller. He wore a trench coat, and soon I went out and bought a trench coat for myself.
 But this particular story almost ended up as a debacle for me. When I reached Chuck by phone, he was livid. Rather than writing down my story with ink and paper, and dictate to Chuck in the main newsroom, I had decided to write my story on my computer screen, which I had never done before. What was I thinking? Where was the rest of my story? Had it vanished into the ether? I was horrified. And keep in mind, this was a murder investigation. Thousands of subscribers would be reading my story the next morning. Or would they? In 1985, computers were still unreliable things. The notes I had typed into my screen had vanished when my office lost electricity. I felt ill.
Fast forward to the present. Most computers remain delicate—exceedingly so. Just spilling a few ounces of water can be dire, as I did recently. And what was at stake? Oh, not much. Just a book about Alzheimer’s that I had been working on for the past three years. This isn’t a hulking tome. But it distills the knowledge I accumulated over those three years since I was diagnosed with Alzheimer’s. And as my fellow local writer Leslie Hergert has shown, a 100-page manuscript can speak louder than a 500-page book, if the writer has the nuance to pull it off.
I was already thinking about how I could salvage parts of my electronic manuscript. Not everything was bad. I did still have my first two chapters on a flash drive. Chapter 2 is especially important, because it describes the two years when I was still working, but didn’t yet have a diagnosis.
And because I had access to my blogposts, all 125 of them, I could have retyped any blogpost was worth with be retyped. But that would have been extremely tedious. But the savior in this saga is Paula, my wife. From the time we met in 1989, I grasped that Paula was very handy around the house. I am quite the opposite. Despite growing up in a commercial fishing family, I never got the hang of doing simple handyman tasks. But Paula has always impressed me with her handy-person skills.
But when the almost fateful spilled glass of water went past the tipping point, I knew what do. I had heard other people mention that the first thing to do if you spill water on your MacBook is to flip the device and let the water drain out. And I did that immediately.
At that point, there wasn’t much else I could do. But what would have been ruinous was if I had been drinking any kind of juice, rather than water. During those two days, I deferred to Paula. Without Paula’s handy-person skills, we might have had to pay roughly $800 or more to the Apple Store. (During my confusion and anxiety, I wasn’t clear whether there was any way to retain my files. At that time, ignorance was something approximating bliss.)
What Paula did was to create a little tent from the MacBook on top of a crate and place a small fan beneath it so the precious computer files could slowly dry. We also got early to the Apple Store, so we didn’t waste time to see what the extent of the damage would be. That weekend happened to coincide with this year’s Walk to End Alzheimer’s, and many of my cohorts at the Alzheimer’s Association were on hand. It took a few days for me to really believe that this nightmare had ended with a pleasant ending.

Friday, August 24, 2018

First in the nation

During my ten-plus years working at the Massachusetts Municipal Association as an editor, writer and project manager, I didn’t recall seeing any articles about Alzheimer’s in either the Boston Globe or State House News. And at a time when I was showing early signs of dementia myself, the last thing I wanted to do was to talk about or think about dementia. But in the years that have followed, the Globe through its partnership with STAT, reporting on health and medicine, has shed much light on Alzheimer’s and other forms of dementia.
A new law, championed by the Alzheimer’s Association in Massachusetts, will require doctors, nurses and other health-care workers to be trained to spot patients with dementia. In a recent Globe article on the law, Alfredo Bartolozzi, a former cohort of mine in a support group at the Alzheimer’s Association in Waltham, was mentioned at the start of the article, because he was at a stage of the disease when presumably simple tasks can be highly challenging. His wife, Rhiana Kohl, pointed out that during Alfredo’s recent hospital stay, an X-ray technician didn’t understand that Alfredo was no longer equipped to understand and answer a series of questions.
Alfredo was diagnosed as a very young age, in his mid-forties. By comparison, I was diagnosed at age 53, which is more typical of young-onset Alzheimer’s. As the Globe writer of the article, Felice J. Freyer, noted, it typically takes a year or two to tease out a diagnosis.
It was at in these years leading up to his diagnosis when things became much worse for Alfredo and his family. According to Freyer, the family’s finances were in a ruinous state. Alfredo was the person who handled their finances. But he was no longer capable of managing that responsibility.
As Freyer noted, “With an earlier diagnosis, Kohl could have taken over managing finances before trouble struck, and made other preparations.” Alfredo would have been in a much better state, and might have had some quality time with his family, or even make a trip to Italy. “And it might have eased the ordeal for their two daughters, now both in their teens.”
Before signing the law, Governor Charlie Baker talked about losing his own mother to Alzheimer’s. He was by far not alone. Many other legislators at the law-signing ceremony at the Alzheimer’s Association office in Waltham spoke about losing loved ones to the disease.
The gist of the new law is to mandate training of health-care workers by October 2021—roughly three years from now. State Senator Barbara L’Italien has emerged as a particularly strong voice on this law and other dementia-friendly policies. And by the time that the governor was wrapping things up, I was able get his attention for about 30 seconds.
            My message was that three years ago, when I was diagnosed, I could still speak fluidly in any context. Now it’s much more challenging, especially in a public setting, because I often lose my train of thought. The governor listened patiently. A few minutes later he exited. But the law he signed will likely be on the books for a very long time.

Friday, August 10, 2018

Sequential steps

On the first Sunday in February 2018, I was involved with a “dementia-friendly” training session. The venue was at my church, St. James’s, which serves both Cambridge and Somerville. A few of people who came had some form of dementia themselves. Immediately after my diagnosis in 2015, my minister, Holly Lyman Antolino, took an interest in my disease. Another key part was filled by Beth Soltzberg, who works at Jewish Families & Children’s Services in Waltham. We were among volunteers in overseeing a volunteers’ training session for people interested in being “Dementia Friends.”
What does this term mean? Volunteers are trained to detect dementia and take appropriate steps. In a ten-page packet that was passed out that February Sunday, the header on the left read “Normal Aging,” and on the right, “10 Early Signs and Symptoms.” Some are subtle. They include, “Confused about the day [of the week] but recalled it later.” On the other side of the ledger are such things as, “Difficulty completing familiar tasks at home, at work or at leisure.” Another warning is “Confusion with time or place.” This is a significant one. And, one cell down on the chart is “Trouble understanding visual images and spatial relationships.” People who have this trouble may want to be screened for postcortical atrophy [PSA], a form of dementia that affects visual processing.
The two most alarming signs are the last two on the list: “Withdrawal from work or social activities”; and, more ominous, “Changes in mood and personality.” I am no expert, but I would be alarmed if a loved one of mine were showing these signs.
Another exercise, called “Bookcase Story,” showed how certain skills and forms of memory are more durable than others: “Imagine that each of has a bookcase that we’ve been filling up throughout our lives. Each book represents our skills or memories.” A picture accompanying the exercise shows a bookcase that is missing most of the books in the upper shelves, but still has many books on the bottom two shelves. Emotions are much more durable than thoughts, and short-term thoughts often dart away like swallows—frustratingly for those of us who are living with dementia. The lower depths of the brain are where the emotions reside. This is the domain of emotions, which typically endure long after the higher levels of thinking have been banished.
In another part of the session, participants were asked to write out a step-by-step process for something you know how to do. I chose to list the steps I take to make a sockeye salmon sandwich. First, I found a can opener in one of our kitchen drawers. But I didn’t open the salmon immediately. That would have caught the attention of one of our two cats, Rusty. Our other cat is skittish, and only eats dry food, so we don’t have to worry about her getting in the way. But Rusty is eternally voracious, and aims to push the envelope. Only occasionally does Rusty get up on the wooden railing on our back porch and plop down on the flashing. But when he does, it’s unnerving. When we were renting in Somerville, we had a large cat, even bigger than Rusty, and that cat did fall off our deck. We were surprised that he wasn’t seriously injured. All he did when he got back into the house was to hiss at his sibling.
I have digressed. I had to make sure one of our two cats, Rusty, didn’t rush into our kitchen as soon I opened the can. And it was a hot day, so I wanted to eat on our deck. But I still wasn’t certain that Rusty wouldn’t escape onto our deck. A couple of months earlier, Rusty did escape. I understand that cats tend to have excellent balance, but Paula and I were acutely aware that he could break a bone or worse. We had to entice him with wet food to get close to him so we could snatch him.
But back to the kitchen, with the aim of constructing my salmon sandwich. First, I found a small stainless steel bowl, large enough for three servings. Then, I grabbed two slices of multigrain bread from a local bakery that I have been patronizing for more than fifteen years. I mixed the olive oil and the balsamic vinegar, along with chopped celery and onions, in the mixing bowl. I also sprinkled some fresh-ground black pepper, before mixing everything together. Finally, I opened the can of “Red” salmon, more familiar to me as “sockeye” salmon. Before I finally opened the can, I made sure that Rusty was sleeping. Fortunately, he was. Then I quickly mixed up the contents. And, fortunately, Rusty doesn’t like my home-made dressing. He’d rather have his meaty cat food.

Friday, July 27, 2018

The preclinical phase

With Boston’s world-class constellations of hospitals and research institutions, it’s hard to have a consensus on who is the most prominent figure in Alzheimer’s research. But the name of Reisa Sperling often comes up. In a well-researched Boston Globe magazine article by Joshua Kendall, the author makes the case that “preclinical medicine” could be the way to counter Alzheimer’s. The most important syllable in this phrase is pre: The gestation period of 10 to 15 years, before Alzheimer’s flowers. By the time people are showing signs of the disease, the die has been cast. And this incubation period typically lasts from ten to fifteen years. “It used to be that you could diagnose Alzheimer’s only upon autopsy,” Sperling noted.
Back in 2011, Sperling was the primary researcher who “proved that the telltale signs of Alzheimer’s long before the patients began to exhibit symptoms.” Following through, Sperling was the primary writer of what became more than twenty writers who contributed to the project. “Sperling proposed using the preclinical phase to change the very definition of the disease, arguing that it should now be based solely on the presence of amyloid and tau,” the two primary symptoms of Alzheimer’s.
In a dark turn, Sperling’s father, also a noted Alzheimer’s researcher, was showing signs of dementia himself. During that year’s Thanksgiving break, Sperling encountered sardine cans all over his office, some of which had been opened. “Her father’s decline was swift, and Leslie died of Alzheimer’s in 2016.  As Kendall observed,  “Research on Alzheimer’s, which accounts for 60 to 80 percent of all cases, urgently needs a reboot.” For the most part, specialists agree that  Alzheimer’s arises from what Kendall describes as “the complex interplay between genetic and environmental risk factors.” I myself, over the last three years  since my diagnosis, have struggled to explain how I ended up with Alzheimer’s. I am now agnostic. The article goes on to record the miserable failures of drugs for Alzheimer’s disease. I am intimately aware of the biotechnology  industry’s failures. Back in late 2016 or early 2017, there was a time when optimism was rising. But one of my cohorts was taking part in the trial. The hope was rather modest: to slow Alzheimer’s progress. It was hard not to be optimistic. But it didn’t pan 0ut.  And even Reisa Sperling couldn’t change that. For many of  my generation of people with early-onset Alzheimer’s, the sand is slipping through the hourglass.
Note: This blogpost was written before Biogen announced its breakthrough in early July. And there is no certainty that Biogen will past muster in clinical trials, however convenient that would be.

Friday, July 13, 2018

A breakthrough

Back on October 21, 2016, my blogpost topic was titled “A means to slow Alzheimer’s?” Some days earlier, I had seen an article by Damian Garde, who writes for the STAT news service, which covers
Alzheimer’s and 0ther neurological disorders. I was a bit tardy to understand the implications. As Garde noted at the time, a “secondary analysis of pooled data showed a 34 percent reduction in the patients’ cognitive decline.” But things didn’t go to fruition. And for the next couple of years, little progress was made in detecting  maddening Alzheimer’s secrets. My next sentence was an understatement: “This finding could be significant”—a sign that in 2016 my understanding of my disease was still rather shallow.
And then the breakthrough was revealed: Alzheimer’s gave up one of its cherished secrets. And it was Biogen, in Cambridge, which performed the alchemy, just after the 4th of July.
What does this mean for me and my cohorts? It’s complicated. My six-plus years of living with early-onset Alzheimer’s has brought me to the end of the first phase of the disease, and into the early-middle stage. In a statement, the company stated, “Biogen is declaring success with a once-failed treatment with for Alzheimer’s disease, pointing to positive secondary results in hopes of saving a drug that many had written off entirely.”
For those of us who are living with the disease, there are still Just organizing the far-flung clinical trials will be a vast organizing project. And, sadly, vast legions of people with Alzheimer’s too far down the Alzheimer’s path to qualify for the clinical trials. I myself am in good physical health, as I approach my 57th birthday. But I have a different concern: I may not be able to withstand the dosage to break up the amyloid plaque, which in recent years has emerged as the key aspect of Alzheimer’s disease.
As a high school football player and wrestler, I had a reputation for my toughness. The difference here is that I would be the passive object, worried that I wouldn’t be able to absorb the full strength of the dosage. Am I being irrational? It’s not like we are starting the clinical trials immediately. But in a-worst-case scenario, I could end up with brain inflammation, and leave me much more worse than I am now. Should I trust the odds? First of all, I want to know the odds.
The clinical trials are expected to last for two years on multiple continents. I invite my readers to contact me on this topic, at mitch.evich@gmail.com

Friday, July 6, 2018

Ups and downs

I never met Ralph Hergert, but I did attend his funeral. In his two professions, as a minister and a social worker, he was widely known in Somerville and Cambridge. His wife, Leslie F. Hergert, has written a quirky and insightful memoir of her late husband. The quirkiness is in the book’s structure. Rather than employing a conventional narrative, Hergert chose the primer mode, titled Alzheimer’s Through the Alphabet: One Journey of Ups and Downs. I would advise readers to read Hergert’s introduction, as it provides some important context. Significantly, Hergert states, “This narrative provides little, if any, advice.” In other words, readers are largely left to their own interpretations.
Some of the juxtapositions are inspired. On the left page, for the letter A, the topic is “Annoying Period.” As Hergert put it, “most of us don’t admit when talking about Alzheimer’s: Our loved ones with Alzheimer’s do lots of annoying things,” like repeating questions and, in more extreme situations, putting the keys in the freezer. On the opposite page, the title is “Becoming a Better Person.” This full passage is difficult to summarize, in part because Hergert is such an accomplished prose stylist. Here’s an extended example, under the header, “Mixed Messages.”
“As should be clear by now,” Hergert wrote, “the messages I have to convey are very mixed. I am never quite sure whether to say how terrible this disease is or how manageable it is. Is it a devastating disease that takes a painful toll on loved ones? Is it something you can deal with if you change your expectations and ways of doing things? ... Do I want legislators and businesspeople and the public to understand the difficulties of this expensive, long-lasting disease and its changing support needs? Or do I want to provide encouragement to people with the disease and their caregivers? Is it manipulative to change messages with audiences? I worry about that, but both messages are true and need to be heard.”
One of my favorite entries in this book is “Hope.” This is not the hope of traditional Christianity. To me, it sounds like the “faith” of the twentieth-century, embodied in existentialism. Hergert writes: “I live without hope.” Rejecting the notion of hope (along with two strange metaphors from Emily Dickinson, “Hope is a strange invention,” and more strangely, “Hope is the thing with feathers”), Hergert then moves to one of her key points: “I have found that living without hope frees me to live in the present and experience the moments—whether sad or happy or funny or difficult—as they come.”
The letter G hosted two near-antonyms: gratitude and grief. I chose to focus on grief. Hergert went into the etymology of the word, distinguishing grief from other synonyms. She commented, “Early on, I felt sad from time to time but was less aware of the ongoing grief. Now it seems to have moved in as a constant presence, a feeling behind my eyes, a weight that tires me, a cloud or shadow over the brightest of days.” May I suggest that this is a kind of dark poetry?
Under the header “Incontinence,” Hergert writes, “Somehow, body fluids never bothered me.” She makes an exception for snot, which did gross her out when her daughter was little. But, “when people in our support group started sharing stories of their husbands pooping on the floor or peeing into an open suitcase, I said that would be the signal that Ralph needed to go to a nursing home. But I had forgotten that excrement didn’t bother me except as a problem and an inconvenience.”
Under J (for “Joy”) is a charming vignette. At that time, Ralph and Leslie were living in Chicago. It was winter. “The alley was a minefield of dog poop. I thought it was disgusting and was just about to complain about it when Ralph said, ‘You know what’s great about winter? All the dog poop is frozen.’”
And under “Losses” is what Hergert termed “the Ossie Davis moment.” (Davis was an African-American actor and civil rights pioneer.) The gist of the matter was that Ralph and Leslie heard on the news one morning that Davis was dead, and discussed him and his death for several minutes. “Then Ralph went downstairs to get the newspaper. When he returned, he said, ‘Hey! Ossie Davis died.’”
The first time I read this passage, I focused on the humor. It wasn’t until a day or two later that I grasped the pathos of the situation: Even in 2005, roughly a decade before Ralph’s death, his short-term memory was severely impaired.
It was many years later when Ralph got lost, in June 2013. As Leslie put it, “Ralph was a walker. He loved to walk around the city. It was something he could do as his disease progressed, and it was something friends could do with him.” Walking was very important to him. He was not a “wanderer,” a person who goes AWOL from an institution; he left the house unannounced while Leslie was in the apartment downstairs helping her mother. Massachusetts has a “Silver Alert” law, which allows police to look for a lost person with dementia immediately, instead of waiting 48 hours before searching for a missing adult. There was a beer festival in Davis Square that night, and Leslie thought it seemed plausible that Ralph was having a beer at the festival. But Ralph was not there. The next day was even more intense. Things ended safely, after 28 hours of searching. And Massachusetts’ Silver Alert system had shown its worth.

Saturday, June 23, 2018


My plan this week was to write about the corrosive effect of anxiety among people with dementia. That is still my aim, but not quite the way I expected. As a prologue, I must confess that I lost most of my first draft of this blogpost. I thought I was immune to this kind of mistake. I always back up my drafts, off-site. Where the vulnerability was exposed was in the name of the file. The two files were almost identical: only one or two key strokes were different. I was left with a rump end. From time to time, I aim to hit a lyrical vein, or even a stream-of-consciousness flow—if the piece had survived. My writing was flowing. I felt this would be one of my better blogposts. But the next day I had almost no recollection of what I had written the day before. That speaks volumes about this insidious disease.
The file should have been in the trash-can icon, from which I could easily have retrieved it to my desktop. I was pleased with my first draft. And when I realized I was having trouble finding it, I didn’t panic. I assumed that there was a way to bring forth my missing file. But the other file, the shorter one, was overwritten. One file held the entire draft. The other one held a fragment, about one-third of my full draft. Unknowingly, I had wiped out a large portion of my blogpost. And as any writer can tell you, rewriting what you’ve lost can be profoundly challenging—especially if you have dementia. I could remember almost nothing from the brunt of my lost first draft.
This, of course, was profoundly frustrating. I knew that I was writing well, but I was unable to transfer the information to my long-term memory. Anxiety runs on one side of my family, so it’s no surprise that I would have anxiety problems once I developed Alzheimer’s. But it wasn’t until I developed Alzheimer’s did my anxiety became a problem for me.
What he did struggle with was anxiety. It’s one reason why he didn’t do as well as he might have in his dual careers, in teaching and commercial fishing. How is this connected with dementia?  Because anxiety on its own can be terribly corrosive. To introduce a metaphor from the drug culture, fentanyl, used to speed up the high from opiates, is like adding anxiety to people who already have Alzheimer’s disease. The less stress you have on your shoulders, the better.

Friday, June 8, 2018

Why we sleep

This book by Matthew Walker is a revelation. Most people rarely think deeply about sleep, unless they are running a sleep deficit, or worse. Occasionally, in my twenties, I would have a severe bout of insomnia. The worst was in Berlin, about six months after the Wall came down. I felt like a husk of myself. As dawn was rising, saliva was pooling in my mouth. But since that lonely dawn more than a quarter-century ago, I’ve only rarely had pronounced sleep problems. These days, Paula is the one who isn’t sleeping very well, thanks in part to my penchant for tossing and turning in my sleep.
Aptly, Walker devoted a section of his book to Alzheimer’s disease. Most people recall learning about REM [rapid eye movements] in high school biology classes. But I had not heard of, or long forgotten, NREM [non-dreaming] sleep. As Walker noted, people have less of the deep NREM sleep as they age. But those with Alzheimer’s suffer this symptom much more acutely: “Sleep disturbance precedes the onset of Alzheimer’s disease by several years, suggesting that it may be an early warning sign of the condition, or even a contributor to it.”
Walker continued, “What struck me was the location in the brain where amyloid accumulates early in the course of Alzheimer’s disease, and most severely in the late stages of the disease. That area is in the middle part of the frontal lobe...the same brain region essential for the electrical generation of deep NREM sleep in healthy young individuals.”
Walker collaborated for several years with Dr. William Jagust at the University of California, Berkeley. The research teams developed a hypothesis: “The more amyloid deposits there were in the middle regions of the frontal lobe, the more impaired the deep-sleep quality was.” Walker stated that their research added “a key piece in the jigsaw puzzle of Alzheimer’s disease,” namely  “a new pathway through which amyloid plaques may contribute to memory decline later in life.” He goes on to explain: “Despite Alzheimer’s being typified by memory loss, the hippocampus—that key memory reservoir in the brain—is mysteriously unaffected by amyloid protein,” which is usually regarded as the most prominent feature in Alzheimer’s disease, with its canary-in-the-coal-mine feature.
Walker believed sleep disruption could be “the missing intermediary factor—one that was transacting the influence of amyloid in one part of the brain on memory, which depended on a different region of the brain.”
In a clinical study to test this theory, elderly patients with varying amounts of amyloid plaque were asked to learn a new set of facts. “We discovered a chain-reaction effect,” Walker wrote. “Those individuals with the highest levels of amyloid deposits in the frontal regions of the brain had the most severe loss of deep sleep and ... [thus] failed to successfully consolidate those new memories. Overnight forgetting, rather than remembering, had taken place. The disruption of deep NREM sleep was therefore a hidden middleman brokering the bad deal between amyloid and memory impairment in Alzheimer’s disease.” The distinction, according to Walker, was that this was not just “normal aging”; it was “a departure from what otherwise is the signature of sleep decline as we get older.”
While Walker was doing his research, he became acquainted with Maiken Nedergaard. The Dutch researcher “found a kind of sewage network called the glymphatic system within the brain. Its name is derived from the body’s equivalent lymphatic system.” (Named from the Greek root word for “glue.”) There was a second major breakthrough, according to Walker: “Think of the buildings of a large metropolitan city physically shrinking at night, allowing municipal cleaning crews easy access to pick up garbage . . . , followed by a good pressure-jet treatment of every nook and cranny. When we wake each morning, our brains can once again function efficiently thanks to this deep cleaning.”
Walker asked rhetorically, “So what does this have to do with Alzheimer’s disease? One piece of toxic debris evacuated by the glymphatic system during sleep is amyloid protein—the poisonous element associated with Alzheimer’s.” Walker went on to suggest, coyly, that “wakefulness is low-level brain damage.” And, in a more serious vein, Walker observed, “Can we begin supplementing the declining deep sleep of vulnerable members of our society during midlife?” That is a laudable goal. But I have two comments. The first is that, within a week to 10 days after leaving my job, I was sleeping well after many years of difficulty sleeping. And that wasn’t just a flash in the pan. It’s been three years since my diagnosis, and I usually go to bed around 11:30 and wake up around 7:30. But something tells me that sooner or later, I will not be sleeping soundly. More than six years since my first symptoms, I am cherishing my sleep.