Abstract

Abstract

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

Anxiety


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.

Saturday, May 26, 2018

A sad end to an honorable man


The day after New Year’s Day 2018, the Boston Globe published a thorough exposé, one that involved people who Paula and I knew from the Alzheimer’s Association, Judy and her husband Steve. As the Globe noted, “People with Alzheimer’s and other forms of dementia frequently need hospital care, yet few hospitals are prepared for them.” In a memorable comment about how hospital staff treated Steve, who had early-onset Alzheimer’s, Judy noted, “I felt like we were aliens that had just landed in a place that had no idea of the language we spoke and no concept of the disease my husband had.”
The consequences were awful. The Globe made clear that Steve was much worse off than before he was admitted, including losing the ability to walk, violating the Hippocratic oath. By early April, he died at age 65. Since then, Judy has made a point of keeping Steve in her memory. It’s helpful, of course, to have an extended family as a form of support. In addition to two grown adult children, she has three grandchildren.
About 10 years ago, Steve built a townhouse adjacent to their main home. The family also maintains a home in coastal Maine. “He just loved life and being with his family and he loved to work on his projects. I think that speaks to what a patient man he was. He even build an in-ground swimming pool”—a task that most people who are handy would eschew. And Judy recalls having animated discussions with Steve on Eastern poetry and philosophy. One of Steve’s favorite poems was a short work by Edwin Markham; Judy relates it to Steve’s desire to participate in clinical trials and ultimately to donate his brain for research. He knew the research into this terrible disease wouldn’t help him, but would help others. Markham’s poem is:

He drew a circle that shut me out
—Heretic, rebel, a thing to flout.
But love and I had the wit to win:
We drew a circle that took him in!

            According to Judy, Steve’s first symptoms appeared 12 or 13 years ago, reflecting how long he was living with the disease. At that time, Judy and Steve were vacationing in the Mediterranean, in Barcelona and other cities. “Steve was an organized man. He carried a messenger bag, and had a pocket for everything,” Judy said. “We had that with us on our trip: The passports in one place, our bathing suits in another, dry socks in another. But whenever we arrived at a new place, he would empty out the whole bag. And I wondered, ‘Now why did he do that?’” On that trip, Judy first noticed that mornings were becoming more challenging.
            And then, seven years ago, Steve had redone the living room and repainted it. A day or so after finishing, he took an afternoon nap, and when he awoke, he asked, “Hey, who moved the furniture?”
“There were times when Steve would send me a message [from work],” Judy recalled. In one case, the topic was that Steve couldn’t find his car keys. When Judy arrived at Northeastern where he worked, it turned out that Steve had had the keys in his pocket the entire time. Another time, Steve delivered an important financial report to his boss, but the report was identical to the one Steve had turned in earlier. This was in May 2011. At that time, Steve began to say, “I can’t go to work today.” According to Judy, Steve “had never missed a day in his life, unless he was truly sick.” This was when the diagnosis process began.
Five months later, a neuropsychologist concluded that Steve had mild cognitive impairment, sometimes considered as a forerunner to Alzheimer’s. Later, another doctor arranged a lumbar puncture, a diagnostic test with high accuracy for diagnosing Alzheimer’s. In late September, Northeastern offered Steve an assistant to compensate for his cognitive decline. Originally, Judy wanted Steve to keep working. But one of his doctors noted that anxiety can accelerate the progress of Alzheimer’s. “If you want to make this disease go faster, expose yourself to stress,” the doctor said. After discussing what to do, the couple agreed that Steve should retire. Steve began to work with Judy at her family daycare center in their home.
Judy recalls this as pleasant period. In nice weather, Steve and Judy would hang out in a park with the daycare children. Some of the kids called Steve “Gramps.” This arrangement worked quite well, especially early on. But then came a time when Steve’s condition further eroded.
Had there been a chance for Steve? By the time I met him in late 2015 or early 2016, he was no longer speaking. Of course, spouses have many ways to communicate beyond speech. When he could still talk, Steve often said, “I want to go home,” even though they were at home. Judy said, “I knew he meant he wanted to go back to how things used to be.” Steve also often said, “My head is firing!” when having difficulty. Much later, when he was nonverbal, Judy described him as sometimes vigorously rubbing the sides of his head. She interpreted this not as a sign of a physical problem, but as his effort to communicate to her, “My head is firing!”
And I honor Steve, in his past agony of his Alzheimer’s, for coining a new term: My head is firing! At some point, I, too, may experience what Steve discovered first.

Thursday, May 10, 2018

Too much choice


In the winter of 2014, I noted that grocery shopping was becoming more than just a weekly chore that cut into leisure time on Saturdays. At that time, I was the one who would make the short drive to our Market Basket in Somerville.
And if you live in the Boston area, you may vaguely recall that the winter of 2014 was a fairly bad winter. But after the record-setting 108.6 inches during 2015, almost everyone forgot about the snowfall of the year before. But I didn’t. At that time, I was already burdened with the possibility that I would lose my job. I recall one morning at Market Basket when I realized that I’d lost my grocery list. Being winter, the supermarket’s floor was marked by muddy footprints. The first time I dropped my grocery list, I was able to regain it, after about five minutes of harried searching. But the following Saturday, I was not so lucky. This time, I gave up, and called Paula for help. I married Paula for many reasons, but high on the list was her competence. She was able to recall almost every item, without a list. She was peeved, and why not? Fortunately for me, Paula’s short-term memory is superb, and she was able to mentally reconstruct the list, with perhaps one or two missing items. In recent years, Paula and I have been sharing the shopping. I wish I could say that I was truly sharing this task with Paula, but I have been relegated to the fruits and vegetables section only. It’s much easier, say, to find an eggplant or a couple of grapefruits than search for the precise variant of my daughter’s preferred yogurt: “Perfect Peach Cobbler.” But the next week, my daughter had moved onto “Apple Crisp Twist.”
Like many shoppers, Paula and I like to go to Trader’s Joe’s. We tend to avoid impulse purchases, but at Trader Joe’s, that can be difficult. I am especially enamored by the inexpensive dark chocolate (85 percent cacao). Ditto for the steel-cut oats, one of earth’s most nourishing grains. But in the summer of 2017, I had perhaps my worst moment in any grocery store. It happened at a Trader Joe’s in Arlington, which we rarely visit. So when I locked up my bike and entered the store, things looked somewhat unfamiliar. But what really tripped me up was the profusion of items within the same general label. This is not confined to Trader Joe’s outlets. But in its ethos of hipness, people with dementia seem to be unwelcome. This wasn’t intentional. It’s just the chain’s culture. The item that made me lose my composure was a packet of freeze-dried strawberries. An employee did try to help me, but because of my compromised short-term memory, I couldn’t hold on to my thoughts long enough to make myself clear. And by that time, my anxiety had skyrocketed.
Despair is a loaded term. But that was the term I heard in my head. I was still in the store. Most days, if I’m anchored by my writing, I feel whole. But when my dementia is exposed, as it was at Trader Joe’s in Arlington? Was I so demented that I couldn’t collect a few items in a Trader’s Joe’s on my own? The word I set on was lost: lost in a funky major food chain, lost to the life I loved until a ghastly disease colonized my hippocampus, lost to the old age that I took for granted, lost to a dark era, an epoch, night falling, my future foreclosed, the turgid closing of the book of life, bewilderment reigning, and at the end—“when the living will envy the dead.”

Friday, April 27, 2018

Down the rabbit hole


Recently I was invited to attend a training session for the Dementia Friendly movement, which has been gaining momentum in Massachusetts over the past few years. The event took place high up in the Ashburton building, not far from the State House and its gilded dome. And because I have trouble going through security on my own—I always fret about leaving my phone, my keys, or my wallet behind—I was asked to come earlier to avoid the crush when going through security.
Only when the session got underway did I realize that I was the featured panelist. My prepared remarks were brief, less than two minutes. When I speak without notes, I often lose my train of thought. But in this case, I was at ease. I asked the audience why I wore a tie today. My answer was if I go too long without wearing one, I might have trouble tying it when I need to wear one. I enjoyed answering the audience’s questions, and was looking forward to having lunch afterward with my former editor at the Massachusetts Municipal Association, the advocacy organization for the state’s cities and towns.
Since my meeting ended well before noon, I stopped at King’s Chapel, one of Boston’s oldest public buildings. I paid the recommended donation of three dollars, and I listened to the docent discussing the building’s history. I still had some time to kill, so I decided to stop to use the bathroom at the food court at the center of Downtown Crossing, a place where I’d often had lunch while working at the MMA. Then something queer took place. I wasn’t sure where I was. I knew I had relieved myself at the food court, but I couldn’t remember how I’d exited the building. I knew that the restrooms were on the basement floor, because over the years I had used the facilities on a regular basis. But I was still confused. One possible factor was that the downtown skyline had changed in the years since I’d left my job at the MMA in the summer of 2015. The skyline of 2015 was not quite the same as the skyline of 2018. A construction boom was underway.
My internal mental map was due for an upgrade. Before long, I found myself in Chinatown, a neighborhood less than a 10-minute walk from the MMA. I had been walking in the wrong direction. I used to tell friends from out of town that Boston’s Chinatown was quite small. But on this day, the neighborhood struck me as vast and warren-like. And the people I asked who spoke English had no idea where One Winthrop Square was. And why should they? The name might suggest a broad plaza, but it’s really just a postage-stamp square, secluded by taller buildings.
All this time my anxiety was building. I could hear my dress shoes slapping on the pavement as I speed-walked, understanding that the worst outcome would be that I would not meet up with my former editor that day. Some readers may be wondering why I didn’t just call or text him. The first answer was the glare; I couldn’t see the screen well enough to find the numbers. I recall a distant period when a cellphone was just a mobile phone. It certainly wasn’t a “smartphone,” a computer that fits in your pocket.
The second question was more complicated. I was embarrassed to divulge that I was lost. Plus my stress level was surging. On account of my compromised short-term memory, I would have quickly forgotten most of what my former editor had told me. And I felt ridiculous asking strangers how to find the place where I had worked for almost ten years.
At one point, I passed by Temple Place, where the MMA used to be located, when I first started my job. At first, I regarded this as utterly useless information. But then I remembered that in 2006, the MMA had created a video showing the route from the old location at Temple Place, very close to Boston Common, to the new Winthrop Square office. Somehow, that video had become embedded in my long-term memory, and provided some hope that I was finally very close to my destination. 
I still wasn’t at Winthrop Square. But by this time, I was starting to calm down. A couple of minutes later I realized that I was not too far from South Station. I’d taken a highly circular route, but once I located Summer Street, I knew exactly where I was going and could get to One Winthrop Square. To my relief, I found John, my former editor, waiting for me. I was 35 minutes late. We were both hungry, and I was much relieved.
Are there lessons from this? If you have dementia, stay within your limits. Be mindful. Pay attention when you enter a public building. Note which door you entered. And once you come out of a building, make a point to get your bearings immediately. That was probably my main mistake. And keep a mini-notebook and a pen that can fit easily in a purse or a pocket, in case you need to write something down. If you’re inside, make a point of noting to exit from the same passage as you entered. And if you have the good fortune, as I did, to visit Berlin and Prague a couple of years ago, look out for monuments that look similar to other monuments. Arriving at our Prague hotel, my friend and I discovered that “our ancient tower” near our hotel and another “ancient tower” were almost identical. It’s a good way to avoid catastrophe on your European vacation.

Friday, April 13, 2018

The Dementia Tour


The real name of Glen Campbell’s 2014 road show was the rather bland “Goodbye Tour.” But nothing was bland about the farewell road show itself. At a point when Glen Campbell was seriously demented, he could still perform songs he had written decades earlier—a musical version of “muscle memory,” the ability to do something without conscious thought because he had done it for so long.
When I found the DVD of I’ll Be Me at my library, I thought that I would be viewing a biopic, not a documentary. The entire film is an examination of Campbell’s dementia and his music. And this DVD might have been a first, a celebrity in his last years letting the world into his most private moments, preserved. He was 78 when he was diagnosed, but he also showed stamina—How many performers in their late seventies have the endurance to perform 151 performances at that age?
As the Washington Post critic Ann Hornaday commented at the time, “What’s so bracing about this documentary is the filmmaker goes into the dark recesses of his psyche as Alzheimer’s continues to colonize his brain.” And the camera doesn’t just capture the inspiring moments, as when viewers can sense the camaraderie among the many family members when they are on the road. But this is not The Sound of Music. Campbell’s dementia is the unifying theme.
One of Campbell’s daughters was fearful that something was going to go very wrong. And why not? By the time the tour commenced, not long after his diagnosis, Campbell was quite demented. He couldn’t always identify his family members. Nor could he tie his shoelaces. And his wife simply commented, “It’s really hard.” At one point, Campbell pronounced, “I’m the chieftain here,” to the discontent of his family members, a sign that he was becoming overbearing. Bill Maclay, the tour manager, suggested that the audience was expecting a stock car race, not a concert, and they were expecting to see a crash. At one point, the teleprompter went off, leaving Campbell untethered from the script of his performance, and calling loudly for the people in the control booth to get it working again. And during rehearsals, his daughter expressed fear that her dad would embarrass himself.
When the teleprompter was working, Campbell stepped up to the microphone and stated into it, “Play solo guitar,” not realizing that those were directions, not the lines he was expected to deliver. Yet, somehow, Campbell, with a lot of loved ones and staffers, managed to maintain what might have ended in a debacle. The voice, though diminished, was still there. So was the showmanship. Most of all, he was still able to sing, and play his guitar, entertaining tens of thousands of his fans. He also managed to make a wan joke: “I go into the kitchen to get something. Then I said, ‘Now why did I come in here  for? I stopped that. I stopped going into the kitchen.”
But as the documentary advanced, Campbell began showing a surly side, almost certainly attributable to his worsening condition and the stress of the tour. And there was an infantile quality to some of Campbell’s actions, such as when he was shown eating a dish of ice cream, the way a very young child would do it, intent on consuming everything that was still in the cup with his tongue.
Country music’s èminence grise died roughly three years after he was diagnosed. I imagine that those last years were not much fun for him or his loved ones. But this documentary is likely to be in circulation for a long time. I recommend it to anyone who wishes to understand the later stages of Alzheimer’s, a place no one wants to go.

Friday, March 30, 2018

After you’ve handed over the car keys


Living in Somerville, Massachusetts, one of the densest cities in the United States, I’ve been spared somewhat from the difficulties of my Alzheimer’s cohorts are experiencing. I gave up my driving license in the fall of 2016, but I can still get around on my bike, or on foot, to any of three supermarkets, each of which is within a 20-minute walk from my house. Of course, the weight of my cargo has to be very limited. Even if I had a milk crate on the back of my bike, the amount of my groceries would be limited. Instead, Paula and I share the grocery shopping at the Somerville Market Basket, where prices are a good deal lower than the other supermarkets.
Last week, I interviewed my cohorts Mike Belleville and Jane Callahan. The three of us were each diagnosed roughly at the same time, in 2015. Mike’s diagnosis was changed to Lewy bodies disorder, another form of dementia. And Jane went through a similar process, in which her diagnosis was changed to posterior cortical atrophy, a form of dementia that affects visual processing.
I will revisit this topic later, but first I wanted to hear from Mike about his experiences with both Uber and “The Ride.” The service is operated by the MBTA at the public’s expense, in accordance with the 1991 Americans With  Disabilities. As the MBTA states, “Under the ADA, paratransit functions as a safety net. It is not intended to be a comprehensive system of transportation, and it’s different from medical or human services.”
When I asked Mike what he most missed about driving, he quickly replied, “Having  the independence to go whenever I want to go.” At the time of this interview, Mike’s father was in the hospital, but Mike had no practical way to visit him. Mike likes to go fishing with his friends, but these days he has depend on the availability of his friends to drive him.
Mike uses Uber, but is somewhat wary of the service. “Is this the right car?’ he said with a chuckle. “If I am in Boston, it can be confusing. You know, there are so many cars.” Mike added, “The app has changed.” And when people with dementia have to adapt to a novel situation, it can be challenging.
Mike uses the Ride to get to his senior center in Douglas, in Worcester County. He appreciates having access to The Ride, but the system has it limits. As Mike put it, “If I wanted to go to my local senior center, it’s not like I could call [The Ride] at 8 a.m. in the morning and they would bring me there. And if I’d say, ‘OK, I’m coming back at four o’clock, they would say, ‘Oh, no, you have to go back at 2 p.m.’ “You’re tied to whatever the schedule is.”
Jane’s problems may be more challenging, because of the nature of posterior cortical atrophy. It’s not a standard feature of Alzheimer’s. I wasn’t at the State House that day, but the conditions sounded awful, for Jane, in particular. The State House is an ancient building, and trying to find your way to the right hearing room on your own can be challenging. And you don’t have to have dementia to get lost within this ancient edifice.
But, according to Jane, the signage met her needs. What she wants is the freedom to be spontaneous. As Jane commented, “There is still a loss of freedom. Your loss of spontaneity is not valued. You can’t just say, I want to go to the museum. And you have to be very specific. ‘Am I going be to standing out in the rain?’ It’s the same way with Uber. Sometimes the drivers are inexperienced, and they don’t know the area. And sometimes they don’t.” In what sounds like a GPS  glitch, the Uber driver ended up in the Boston neighborhood of West Roxbury, about as far you can travel and still be in Boston. That’s one of the drawbacks of GPS. The technology is not infallible. I learned that in Washington, D.C., a few years ago. But that’s another story.