Friday, November 30, 2018

Use it or lose it

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

Friday, November 2, 2018

Learning to speak

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

Friday, October 12, 2018

Reading comprehension

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

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

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

Friday, October 5, 2018

Beware of screens

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

Friday, August 24, 2018

First in the nation

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

Friday, August 10, 2018

Sequential steps

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

Friday, July 27, 2018

The preclinical phase

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