Friday, January 18, 2019

A sturdy template

Pam MacLeod, who works in the Massachusetts Executive Office of Elder Affairs, describes herself as a program development professional. Since early in her career, she has helped foreign, state and municipal governments develop new policies and programs and now she works to address the burgeoning number of seniors, a good many of them with Alzheimer’s or some other form of dementia.
She joined Elder Affairs in June of 2014 and became involved in the Dementia Friendly movement in 2015.
“We heard about and learned about the Dementia Friendly movement,” MacLeod commented.” We wanted to see what Minnesota was doing as they had already become a national model.” Wisconsin was another state that emerged as a leader. And now Massachusetts itself could become an example to other states. To get things started, they consulted Olivia Mastry of Minnesota, a prominent figure in the Dementia Friendly movement. Not long thereafter, Massachusetts became an “early adopter” of dementia friendly practices along with only a handful of other states.
An example of the Dementia Friendly movement was a planned community in the Netherlands established in 2006, called Buurtzorg. It was a remarkable breakthrough. Over time, this Dutch outpost provided a new model for dementia care. A decade later, in the Boston area, I witnessed a large audience at a kick-off event for Dementia Friendly Massachusetts. “We had quite a turnout,” MacLeod noted. On my weekly blog, I had unprecedented “hits” on my blog. Typically at that time, I would get around 300 visits a week. But that week I got around 900 visits. And that wasn’t a fluke. The next week I got close to 600 visits. How this happened is that there was a critical mass of people who wanted to learn more about the  dementia friendly movement. And if the organizers had settled on a smaller venue, much of the vitality would have been sapped. In the logistics business, you have to plan well ahead.
The four tenets of the organization are that people want control for as long they can; people strive to maintain or improve their lives; people seek social interaction; and people seek ‘warm’ relationships’ with others. With that in mind, I am looking forward to observing the movement grow, in the U.S. and beyond.

Friday, January 11, 2019

For real?

I first came across Dr. Dale Bredesen in November 2016, when he was invited to appear on the Today program. Now, he has published a book of close to 300 pages, in which he claims that he has found the key to not just stop Alzheimer’s, but reverse its damage. For many people in the field, this might sound like science fiction. But, after all, solving Alzheimer’s disease has become the holy grail of the early 21st century. It’s not just the terrible toll inflicted on the victims. Family members are often drafted into being “volunteer caregivers,” which can put pressure on the whole family.
            The book opens with the fact that even the gods of the biotechnology world rarely make a splash, and when they do, failure is almost foreordained. This was the case in 2018, when Biogen almost overnight raised the hopes of people with dementia to think that Alzheimer’s might be domesticated—the way AIDS became a manageable disease after Magic Johnson showed the world that the HIV virus could be just another manageable disease.
But here is a downbeat message that we might be hearing for decades: The human brain is too complex to be “fixed” by mortals. My understanding is that only the most recently diagnosed would benefit, should a breakthrough drug arise, not people already into the middle phase of Alzheimer’s, like me. That was my takeaway. Am I fatalistic? Not really. But I am realistic. The failure of Biogen’s compound set me back, and I started to direct myself to focus on the time I have left—the original purpose of my blog.
But as Bredesen puts it, “Alzheimer’s disease has become part of the Zeitgeist.” I rarely go a full day without seeing or hearing about the topic, whether online or in print or on the radio or in a podcast. Bredesen is ambitious. A key insight of his is that Alzheimer’s is not a unified disease, but three distinct pathologies. “Each one requires a different treatment. Treating them all the same way is as naïve as treating all infections as the same.”
Bredesen introduces “Kristin,” who at the time was considering suicide. Her mother had died from the disease after 18 years of decline, “And at the end Kristin had suffered alone, for her mother was no longer sentient.” At 65, Kristin started to show the telltale signs of Alzheimer’s herself. Common symptoms arose: “Unable to remember numbers, she had to write down even four digits, not to mention phone numbers.” She began to get lost in what previously was common terrain. According to Kristen, she confided to a family member, “Did you know I had Alzheimer’s disease?” The family member answered, “Of course, it was obvious. I just did not want to say anything to you about it.” Reluctantly, she retired. For Bredesen, the next sentence is crucial: “Alzheimer’s disease does not arise from the brain failing to function as it evolved to [author’s italics]. And “Kristen was Patient Zero,” according to Bredesen.
Since 2016, Bredesen has been illuminating his main point. Chapter 3 is titled, “How Does It Feel to Come Back from Dementia?” Confident? Most important, it doesn’t tell you what Alzheimer’s disease actually is.
Chapter 4 provides a primer for the Bredesen program. And this is where I have a qualm. Not a big one. More of an inconvenience. From early on, and even before my diagnosis, I was following the Mediterranean Diet. After I was diagnosed with early-onset Alzheimer’s, I was gladdened to learn that the Mediterranean Diet was for real. After I left my job, I began to dose myself daily. That was well more than three years ago. But the two approaches to diet are almost opposites. Let’s just say that I am playing on someone else’s football field.
Bredesen’s program, called ReCODE, is a three-part approach that is supposed to fight “the three neurothreats (inflammation, shortage of brain-supporting molecules, or exposure to toxic substances) that the brain responds to with what we now know as Alzheimer’s.” The first part is a diet to fight inflammation by avoiding trans-fats, sugar, and gluten. The second part of the approach is using exercise, hormones (“such as oestradiol and testosterone”), and vitamin D and folate to increase “brain-derived neurotrophic factor (BDNF).” Finally, he says to “eliminate toxins” as “an effective way to reduce toxic induction of amyloid.” This last approach requires identifying your exposure to toxins, removing their source, “and then detoxification that includes ... detoxifying food such as cruciferous vegetables, pure-water hydration, sauna-based removal of a specific class of toxins, and increasing critical molecules such as glutathione.”
So what are my options?  Be stubborn? I’d be a fool not to give the Bredesen approach a chance. But in the weeks and months ahead, I may be pining for my favorite foods, which include steel-cut oats, soaked overnight, and then cooked another 10 minutes in the morning. Of course, I would follow the Bredesen protocol for a trial, assuming that I can get into some kind of trial. But I will miss my olive oil, and my daily crusty bread as my communion loaf—assuming that Bredesen’s diet doesn’t pan out. I have doubts. Too many brilliant minds have met their match in the sticky amyloid in the human brain.


Friday, December 28, 2018

AIDS in the eghties

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

Friday, December 21, 2018

Too many layers

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

Tuesday, December 18, 2018

An American orginal

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

Friday, November 30, 2018

Use it or lose it

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

Friday, November 2, 2018

Learning to speak

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