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.

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.

Friday, March 16, 2018

Cells on fire

The first time I heard the term “inflammation” in the context of Alzheimer’s was when a cousin of mine mentioned it a couple months after I was diagnosed with Alzheimer’s. At first, the topic seemed exceedingly vague. Inflammation? Well, yes. The phenomenon is commonplace. At the end of the holidays, I experienced a freak accident. It was a day of mild weather, and Paula asked me to drag our Christmas tree further down our driveway. The unseasonable weather prompted me take off my gloves. A moment later I was reminded of World War II movies in the Pacific, when Japanese soldiers were purported to torture U.S. soldiers by jamming slender bamboo reeds beneath the fingernails. By the next day, during a meeting Paula and I was attending, I had to recuse myself for a time. No one on hand had any painkillers on hand. The next day I visited my doctor’s office, and one of the nurses was almost gleeful with the quantity of pus I produced.
A recent Time magazine article began with the curious question, “What does a snubbed toe or a splinter in a finger have to do with your risk of developing Alzheimer’s, suffering a heart attack or succumbing to colon cancer?” This rhetorical question is at the heart of cellular inflammation. Before the advent of antibiotics, anyone who developed a serious infection had a fair chance of dying, or sustain damage to their heart, as was the case of my paternal grandmother, who died in middle age.
“Most of the time inflammation is a lifesaver that enables our bodies to fend off various diseases. But the process is not failsafe. “Every once in a while,” the writers pointed out, “the whole feverish production doesn’t shut down on cue.” And sometimes the problem is a genetic disorder. In a grisly image, the writers remark, “chews up brain cells of Alzheimer’s victims.”
Do a search on “cellular inflammation,” as I did, and you are likely to be presented with a concise definition, provided, most likely, by Google: “Cellular inflammation is the type of inflammation that is below the perception of pain.” What it does is disrupt the hormonal signaling at the cellular levels that leads to increased fat levels,” which can lead to chronic diseases, including obesity.” But the most salient information I retrieved was supplied by Dr. James Ellison, of the Swank Memory Care Center.
“Our understanding of diseases often follows a predictable journey,” Ellison noted. “First, we begin to understand that a group of symptoms occur together”—a simple example is that a sore throat typically leads to a cough. But, “In the case of the more severe sore throat, its potential for leaving serious heart damage, was understood before its cause, strep infection, was made possible by diagnostics. Once a cure is in place”—Ellison is an optimist—“researchers may be able to design a specific treatment, but not always. We know the antibiotics are likely to defeat strep throat, but we still have no cure for the common viral sore throat.” This threshold must be frustrating to scientists.
But let’s assume that Ellison’s way is the most promising approach. Under the heading “Microscopic Guard Dogs,” he explores the possibility that large white blood cells, called macrophages, that “feed on pathogens.” In an extended metaphor, Ellison writes, “the body’s immune system, which functions as a security guard by identifying and attacking potential sources of harm, is armed with a variety of protective weapons. But “unlike an infection that can be defeated, the plaques remain as a persistent irritant. In the smoldering battle between microphages and plaques, inflammatory chemicals called cytokines and damaging chemicals…Healthy brain cells can be caught in the crossfire as well.”
Concluding, Ellison writes, “a current explanation of this failure focuses on the different effects that anti-inflammation treatment might have at different disease stages of Alzheimer’s.” This sounds reasonable, but perhaps a bit pat. The “cocktail” approach of medicine, which came into vogue when it became clear that Magic Johnson, after the former NBA superstar was diagnosed with HIV in 1991, defied expectations of his early demise. But when I am honest with myself, I feel that a real breakthrough remains quite down the road, perhaps another full generation.
Could cellular inflammation be the cause of my Alzheimer’s diagnosis? Nothing else, so far, checks out: no hint of Alzheimer’s in my family tree. No concussion serious enough to put me in danger of the much-feared “CTE,” short for chronic traumatic encephalopathy, which in recent years have disturbed many former football players. I will probably never know.

Friday, March 2, 2018

Late news

A couple of years ago, I purchased a large bottle of turmeric capsules. I’d heard that Alzheimer’s rates in some parts of India are a good deal lower than in North America. Unfortunately, the website I visited implied that curcumin, the active ingredient, could only be realized by regular eating subcontinent food. And I do like Indian food. But it was immediately clear that the rest of my family, or even myself, would be unwilling to make a radical change in diet. I also recall, when Paula and I visited Innsbruck, Austria, in 1991, one of the most striking places on earth, I threw up violently, presumably on account of Indian food.
Belatedly, I grasped that turmeric capsules could be helpful. In January, an article in Forbes, by Alice G. Walton, described how turmeric could help people with cognitive problems. “Curcumin’s anti-inflammation, anti-amyloid, and possible anti-tau properties may offer neurons protective benefits,” Walton  wrote. (Tau and amyloid plaque are the two significant features of Alzheimer’s. Tau presents as “tangles,” amyloid as “plaques.”). And, significantly, recent studies indicate a link between curcumin consumption and lower rates of Alzheimer’s disease.
While the research has been described as promising, “initial placebo-controlled trials have yielded negative results, perhaps because they used forms of curcumin with limited “bioavailability”—the proportion of a drug or herbal supplement that is efficacious. Apparently, the only downside of the trial was abdominal pain, presumably caused by the spicy diet.
In her conclusion, Walton wrote, “The new study is exciting, since it’s a true clinical study, and earlier evidence had been mixed. Researchers have long observed that some groups of people in India have lower incidents of Alzheimer’s disease, which is thought to be in part to the higher intake of turmeric.” Walton also noted that studies have hinted at the favorable aspects of turmeric, in boosting mood and calming anxiety. (Anxiety is a frequent companion of Alzheimer’s.)
In a less august tribune, the U.K. website “Just Vitamins” makes the blunt claim that Indian food “can break down amyloid plaques.” If this proves to be true, this would be encouraging news, but information highways are littered with the carcasses of projects that died from lack of money, or lack of relevance, or both. In the meantime, I’ll be popping my turmeric capsules, and making sure I don’t gag on them on. My ruler indicates the capsules are just a shade over 2 centimeters.
The claim, of course, is that curcumin can break down amyloid plaque, one of the two  facets of Alzheimer’s. (The other is  “tau,” which presents as tangles.) And, if you haven’t noticed, I don’t have much of a background in science. So I still have things to learn about my condition. Make that a lot to learn. In a future post, I will take on cellular inflammation, another topic that may leave me treading water for a while, until I get my bearings.

Friday, February 16, 2018

Plan ahead

As I was writing this post, I was drawing on a slender document titled, “What If I Had Dementia?” Since I do have a form of  dementia, this is not just a thought experiment. The organization’s website shows a soothing scene, with tendrils of low-lying land forms wreathed with mist against a deep-green forest and what looks like a Scandinavian fjord.
 The prose is intentionally bland. The document notes that years of life, post-diagnosis, varies widely, from up to an extreme of twenty years. The average time to reach the severe form of the disease is about eight years. But it’s worth mentioning that some individuals turn out to be outliers. Muhammad Ali, the most famous boxer of all time, surely is in this category. Ali was suffering from Parkinson’s disease, not Alzheimer’s, but he was clearly demented when he died at age 74.
Barring a major research breakthrough in the near future, those of us with Alzhiemer’s now are very likely to die from the disease, unless some other disease or fatal accident puts an end to our lives. As the document notes, some patients lash out aggressively at loved ones, adding to the stress for caregivers and loved ones alike. And, of course, spouses or adult children often serve as caregivers, typically without compensation.
The central question posed in the document is, “What kind of medical care would you want if you were to develop worsening dementia?” Under these circumstances, it’s important to be crystal clear about your intentions. As the document notes, those of us with Alzheimer’s or another form of dementia, should make clear, in writing, to make sure the person’s intent crystal clear. Paula and I are on the same page when it comes to the terminal stage of dementia. The last thing I would want to be is a burden on my family—neither physically, emotionally, and, especially, not financially.
A couple of other comments: First, early-onset Alzheimer’s is not mentioned. This is no surprise. I’ve heard from people working in health care who are not aware that symptoms of Alzheimer’s can present themselves as early as one’s late forties. And these days, news articles about Alzheimer’s seem to be omnipresent, especially in the Boston area, home to many hospitals and research institutes and universities.
But  I found the survey is a little confusing, pertaining to having mild dementia. Who wouldn’t want to live through the early stage of the disease? That is the period when  the disease is least worse. The reason people fear the middle stage is obvious: It is a downward promotion, and an implicit message: The next two stages will be worse. With this understanding, I named this blog, “The Diminishing Window.” Now is the time to make hay while the sun is still up.

To view the document in question, do a search for “Health Directive for Dementia.”


Friday, February 2, 2018

Sisters and care partners

In 2015, I received a grant from the Somerville Arts Council. This was not the first time I’d received funding from the city. But the circumstances were much different. Back in 2008, my grant was the result of a slender satirical novel I self-published. When I applied for the money in 2015, I wasn’t sure whether my blog would even qualify as an “arts” entry. But it did. And Jane Callachan, then living in Somerville, reached out to me to ask if she could be on my panel. I agreed, and I wasn’t disappointed.
The library where the forum took place was packed—a clear demonstration that people with dementia can be productive. And the forum sent a clear message: people with dementia are not just capable speaking publicly; they can organize such events. And by the time of the forum, Jane had a new diagnosis: posterior cortical atrophy, a variant of dementia that affects vision. Even back then, I was not comfortable speaking unless I had a text to read from. But Jane required no such help. She spoke fluidly and compellingly, without the help of notes.
Jane and I were each diagnosed at age 53, but our journeys, of course, were different. For more than 2o years, Jane worked in the hospitality industry, in Harvard Square. She loved helping her clients and she loved the milieu. Describing herself as a “social creature,” she enjoyed hearing snatches of other languages filtering through the polyglot city of Cambridge. Her job brought her significant satisfaction. “They were interesting people,” Jane noted. “It just made me feel that I was part of this big world.”
Her problems, when they came, were difficult to pinpoint. About a year earlier, she started making mistakes in her work. At that early stage, Jane had no trouble catching the miscues. But then it became difficult to do her job. Confiding to her sister, Annie, proffered advice: “Just calm down.” But Jane could sense that something was wrong. “I kept on saying, ‘there’s something wrong with me. I think I have early-onset Alzheimer’s.’” According to Jane, Annie still has a residue of guilt for not taking more seriously Jane’s concerns about having Alzheimer’s or some other form of dementia.
Early on, Jane was terrified by the notion that she might be going blind. Another factor in her life was depression, which she had lived with since her teenage years, although she didn’t take drugs for the condition. A new concern for Jane, after her original diagnosis, was anxiety. “When you have to make a phone call, and when you can’t read the numbers on your phone, it is stressful. And when you start thinking you can’t do those things, you start thinking that you are losing your mind. I was terrified. It made me feel small, weak, afraid, terrified.” Jane slowly enunciated each word.
At this point, Jane and Annie made a second trip to LensCrafters. But nothing changed for Jane. The next step—the crucial one—was to meet with a neurologist. Jane’s therapist provided common sense: “If you think you’re going blind or going crazy or have Alzheimer’s, see a neurologist.” And because the situation was deemed urgent, a PET scan was scheduled promptly, at Beth Israel Hospital in Boston.
The initial diagnosis was early-onset Alzheimer’s. But within a matter of months, the diagnosis was changed to the more precise diagnosis of posterior cortical atrophy, a form of dementia that affects vision. Recalling her emotions at the time of her diagnosis, “I was so angry. I just wanted to throw something. And I would take these wicker baskets. I had never wanted to break something. But I went into the kitchen, and I slammed the wicker baskets around the room.”
In the two-plus years since Jane and I received our initial diagnoses, we’ve both been active in advocating for the Alzheimer’s Association agenda—taking part in lobbying the Massachusetts State House as well in the nation’s capitol, and taking part in forums in cities like Brockton and Marlborough. Currently, Jane is volunteering at a Salem elementary school, where she and her husband now live. But she wants to increase her portfolio as an activist on behalf of dementia. Recently, Jane visited a Salem “Memory café”—a venue in which a range of people with cognitive problems can congregate comfortably, despite their limitations.
Jane’s main objective is to lessen the stigma of dementia. “I can’t say I am grateful for Alzheimer’s,” Jane stated, “but I have to find other pursuits to give my life meaning. But I think it’s only natural to be upset,” she continued, referring to the stigma of dementia. “It’s a terrible disease. But there are ways to make it better,” she said, citing art and music in particular. “It’s not like you sit around and talk to people and say, ‘What kind of dementia do you have?”
These days, Jane is living in a townhouse in Salem, Massachusetts, with her husband, not far from her sister’s unit in the same development. She misses Somerville, but the two sisters just  are perhaps closer—both literally and figuratively—than they have been since they were growing up. Jane and her husband are residing in the same townhouse development where Annie has been living for some time.  
And it’s not just services such as helping Jane for filing her income taxes, which can be challenging for anyone with cognitive decline. The most important thing, according to Jane, is Annie’s “kindness and wisdom,” intangibles to make this unconventional pairs of households work