Friday, June 30, 2017

What to expect when ice melts, sand shifts

If there is an upside of having early-onset Alzheimer’s, it is that most of us are otherwise in good health. That is much less the case when the disease strikes later in life, as the recent book, One Couple’s Journey With Alzheimer’s Disease: Melting Ice, Shifting Sands, makes clear. Donald, who has had Alzheimer’s for many years, has been showing steady decline for years, and Marjorie, his wife and caregiver, struggles to meet Donald’s many needs.
“I tell people it is like melting ice, the more it melts, the less safe it is to walk on, and I have to make adjustments to ensure my well-being,” Donald, a retired general contractor, says. This is no casual metaphor. As a boy of eleven, Donald delivered ice to his neighbors. And he learned to drive a car just by observing what other drivers were doing. As Donald commented, “The ice is melting. I’m on unsteady ground and need to find new meaning and purpose.”
The thread of this story is Donald’s worsening dementia.
“Lots of time now I’m not even aware of what I am doing,” Donald acknowledged. He noted an instance in which he turned on a classical radio station, but then soon turned off each of his hearing aids.As a result, “I can’t hear the music, or anyone who might be talking to me. I put my cane down, walked away, and I’m not aware of what I’ve done.” Nor is he always cognizant of the repetitive motions of his fingers and his feet.
Marjorie, wary of caregiver burn-out, makes a point to obtain respite for herself on a regular basis. She writes poems, many of which are included in the book. And in a radiant chapter titled “Making Connections,” Marjorie commented, “The human spirit is resilient, so finding and making connections helps the person with Alzheimer’s reclaim a vital part of the self. Deep inside, the essential Donald is here.” Marjorie likens the process to husking an ear of corn, peeling away “the overlying husks in order to grab rather than trying to grab the inner ones first to get to the cob itself. I have to peel away external layers as well as the fine silk hairs that serve as a distraction in order to find the inner person who most certainly is still there waiting for a connection.”
In another insightful passage, Marjorie recounted her and Donald’s trip to the Currier Museum of Art in Manchester, New Hampshire. The museum also functions as a memory café, a place where people with compromised memory can appreciate art and music. But there is one traditional activity that Donald can no longer fulfill: preparing the house for winter. As Marjorie puts it, Donald “grieves” for the decades for this almost sacred task.
One of the things that strikes me about the Burkes’ book is how Donald’s physical pain is so acute. One thinks of Alzheimer’s as a largely painless disease. But through the aging process, Donald has developed many chronic aches and pains. And under a dictated chapter titled “Where Am I? Who am I?,” Donald conveys the ghastly later-stage symptoms that can only be experienced by living through it. Here is a sample:
“Five and a half years after being diagnosed, life gets more confusing for me all the time as this, which began as a tropical storm and has turned into a full-blown hurricane, continues to take its toll on me as well as those around me. I can usually rise to the occasion with other people, to the point that many don’t realize how compromised my memory has become….
“I hate this constant dizziness that I live with. Hate [Donald’s emphasis] really isn’t too strong for my feelings regarding the dizziness. Of course, my rational self knows that I need to keep it with me to prevent those falls that scare everyone and cause serious damage to my arms and elbows with abrasions and lacerations….”
Near the end of the book, Marjorie matter-of-factly states, “The behaviors Donald exhibit go along with late-stage Alzheimer’s. I had been hoping we might escape some of them, since they don’t happen for everyone who gets the disease.” Hallucinations have become common. Donald often asks strange questions, such as “Where will I  sleep because there are all these people in the house?” Donald and Marjorie are churchgoers, and as she has observed, Donald “likes to take the hands of women and stroke them, or blow on them if they are cold.” In a separate incident, he patted the rear end of a young woman, assuming he was pushing her wallet back into her pocket, when it was actually her cellphone. “Yes, I laughed later, but I was horrified when it happened,” Marjorie reported.
Donald’s narrative ends where no one wants to arrive: the dementia unit in Granite Ledges nursing home.

Friday, June 16, 2017

Dementia and isolation

Earlier this month, Newsweek pointed out that people who live in rural areas tend to suffer more from Alzheimer’s than other people with the disease do. The writer, Jessica Wapner, chronicled the decline of a farming community not far from Lake Ontario in upstate New York. The elderly couple Wapner depicts might be described as “salt of the earth.” While Rochester, a city of more than 200,000, is less than 30 miles away, the couple goes there only if it is necessary—for doctor’s appointments, for example. As Wapner recounts, the future couple were born three days apart, and have known each other since they were ten. They married at eighteen, and raised six kids. Not one of the children lives nearby.
Wapner writes, “They still hold hands and gaze into each other’s eyes, but these days the look in Dave’s eyes is cloudy and glazed. He seems absent, and it’s hard to tell if he’s following a conversation or just pretending to. And June never knows when his teasing is done with endearment or when he is hiding the fact that his mind is eroding.” Wapner added, “Soon, Dave will forget who June is.”
Much has been said and written over the decades of the decline of family farming, and one detail provided by Wapner speaks loudly: The death rate is 14 percent higher for upstate New York’s least populated counties. “I get angry with God,” June told Wapner. But the state recently allocated $62.5 million over five years to help people like Dave and June. According to Newsweek, similar programs have been established in other largely rural states, including Minnesota, North Dakota and North Carolina. As Wapner points out, “Family dynamics often become fraught. Children who have migrated to urban communities cannot help the caregiving parent” on a regular basis. Wapner quoted one family member as asking, “Where are the kids? Why aren’t they here?” June herself acknowledged, “I don’t feel terribly supported by them.”
One of the dark ironies among adult children and elderly parents is that care providers themselves often need help—burned out by the stultifying nature of their work. As the caregiver for Dave, June commented, “I get worried about myself.” Multiply people like Dave and June across the sparsely populated regions of the nation, and what you have is a largely invisible epidemic, too far for many frail seniors to drive alone. As Wapner states, “Caring for someone with dementia is more than a full-time job; it is a full-life job.” Even veteran care professionals can be worn down. According to Carol Podgorski, the director of the Memory Care program at the University of Rochester Medical Center, “I forget things. I get worried about me.”

Friday, June 9, 2017

‘Magic Johnson is going to die’

Among the many medical miracles of the twentieth century, two stand out: the development of penicillin, the first antibiotic, in 1928, which has saved countless lives; and, at the other end of the century, the gradual change, at least in industrialized countries, the breakthrough in the early nineties, leading to H.I.V., the forerunner to AIDS, becoming a manageable condition.
Magic Johnson, the ebullient former basketball superstar who remains fairly healthy a quarter-century after his diagnosis, has become an icon of sort, to the extent that some people assume he is fully cured. That is not the case. He still takes a cocktail of pills each day. But his name itself has become a metaphor for the prowess of the pharmaceutical industry. In one of my first blogposts, in August 2015, I commented that there was no cure for Alzheimer’s. But then I stated, “That could change, of course, just as things changed in the early nineties, saving the lives of countless others.”
A recent article in the journal Scientific American, reissued in a condensed form, may help raise the hopes of people with Alzheimer’s and their loved ones. The recent article’s title—A New Approach to Alzheimer’s—is followed by an intriguing subhead: The disease’s complexity and multiple contributing factors suggest that combinations of drugs could be more effective than single medications.
The article, written by James Hendrix, states up front that “Having witnessed the success of combination therapy in HIV, cancer and heart disease, the time has come for Alzheimer’s disease.” As a result of a 2016 meeting with the Alzheimer’s Association and other parties, a consensus emerged that the most effective Alzheimer’s treatments may be those who attack on multiple fronts. With researchers developing a deeper understanding of the disease, the picture emerging is one in which new classes of antiviral medications—“each attacking the virus in a unique way”—doctors will be able to prescribe multiple drugs that have demonstrated efficacy.
The Alzheimer’s Association, in collaboration with the Alzheimer’s Drug Discovery Foundation, last year created the Alzheimer’s Combination Therapy Opportunities [ACTO], a vehicle designed to deliver $2 million this year that simultaneously target multiple processes. “An ACTO-funded study must involve repurposed drugs”—those that have been determined safe for using in treating in other conditions.
According to the Scientific American article, a combination of experimental anti-amyloid drugs could more effectively reduce amyloid plaque, one of the two typical manifestations of the disease. In another study, the hormone leptin, which curbs hunger, has shown potential to reduce plaque as well as cellular inflammation. The group’s recommendation is to do more research on animal subjects before it is clear that human subjects would not be at risk.
As the Scientific American article concluded, “We are at a junction of unprecedented promise in Alzheimer’s research. A few decades ago we knew virtually nothing about how Alzheimer’s developed or progressed.” Will this collaboration bear fruit? If so, it will be a very big deal—as big as what happened after AIDS activists declared in 1991 that Magic Johnson was going to die.
And, yes, Magic Johnson is going to die, as all mortals do.

Friday, June 2, 2017

Print media

I first heard the term “paperless office” when I was working on my campus newspaper in the early eighties. Twice a week our decrepit newsroom resounded with the clacking of manual typewriters. We knew, of course, that we were doing our writing on an anachronism. I wrote my term papers on a sleek IBM Selectric, which my parents bought for me when I was in high school. The novel technology of that period was an insertable cartridge that allowed to correct mistakes in white ink. I first came across a personal computer in 1983. I recall it cost somewhere around $1,ooo, equivalent to almost $2,500 today.
Even then, we knew that the newspaper business was in decline. The economic problems of the late seventies and early eighties—first inflation, then recession—led to a joint operating agreement between Seattle’s two dailies. The newspapers continued to strive to outdo each other, but something had been lost. The print edition of the Seattle Post-Intelligencer, the more flamboyant paper, was terminated in early 2009, a casualty of the Great Recession.
I have my own reason to favor printed information over pixels on a screen. When I am doing my research for my blog, I sometimes find it onerous to accurately transcribe information from online sources. This should be a simple task, of course, but Alzheimer’s tends to scramble the equation. I work on a Macbook, which makes it easy to take customized screenshots that I intend to quote or paraphrase from—with attribution, of course. The process is tedious, and sometimes confounds me. Using a six-by-nine-inch flip notebook, I transcribe key passages of whatever I happen to be writing about, being careful not to plagiarize. For many years in my thirties, I taught college composition courses for international students, and I was constantly reminding my students the difference between using a quote and using a paraphrase.
When I was working on a recent post, I assumed that I was all set. Then I realized I’d written a very similar long sentence later in the same paragraph. Through a combination of bad habits and short-term memory erosion, I can’t always trust myself to do something as seemingly easy as accurately transcribe information from a series of screenshots. I do this on a nine-inch by six-inch spiral notepad. It’s slow going, but since I usually have the time, I don’t mind transcribing the information. Still, it’s humbling to grasp Alzheimer’s progress. The disease moves in only one direction.