tag:blogger.com,1999:blog-59529578225892646622024-03-05T10:58:43.098-08:00The Diminishing WindowMitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.comBlogger147125tag:blogger.com,1999:blog-5952957822589264662.post-91859200922017613942019-07-31T15:45:00.000-07:002019-07-31T15:45:00.600-07:00The final blogpost
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<span style="font-family: Georgia;">After my diagnosis of
early-onset Alzheimer’s, I knew I had to write about my condition. But how? I
soon learned that Greg O’Brien, who lives on the Cape, had written a stellar
book about early-onset Alzheimer’s. I’ve met Greg only one time, and the
encounter was brief. But his book is essential to me. Greg proved that someone
with Alzheimer’s can write at a high level.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia;">Why
am I ending my blog? Alzheimer’s is a “progressive” disease. There is no going
back to an earlier stage. More important, doing my blog has come to be an arduous
task. Or worse. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia;">Yes,
I can depend on Paula’s skills. But Paula has other work to do. And I am chary
to dump another task on her. And some of you may recall the near loss of my electronic
manuscript, after I tipped a glass of water on my laptop, putting me in a funk.
Paula was magnificent that day. That’s one reason I married her: supreme calm
under stress. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia;">And
now that I won’t be publishing my blogposts, how will I fill my time? This
should be fairly easy. For decades, I carped about not having time to work on my
fiction. Now I will have a chance. Certainly, I will have the time. But fiction
is a more demanding genre. My last book was a collection of essays, focused on
commercial fishing in Puget Sound and Southeastern Alaska.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia;">There
was a time that my fiction writing was the center of my universe. Here is an
example. In 1989, I was preparing for my “comps”—short for comprehensive
master’s exam—at Northeastern University. While other students had diligent
plans to ensure they pass, I flippantly roared through the test. Why the rush? Elementary,
dear Watson. I hoped to get back to Somerville, so I could write a page or two
of my novel when I got home. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia;">This
time around, things are different. I recall a Northeastern classmate suggesting
that I was faintly obsessed with my book, and he was probably right. O,
creative youth, make your imprint before life hardens into obsidian.</span></div>
<div class="MsoNormal" style="tab-stops: 13.5pt; text-indent: .5in;">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoNormal">
<br /></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com1tag:blogger.com,1999:blog-5952957822589264662.post-24711146130011235852019-07-25T13:52:00.000-07:002019-07-25T13:52:16.782-07:00Middle stage
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What does the middle stage of Alzheimer’s feel like? Let me
be your guide. This past week was a hard one. It started with high hopes. For
the fourth time, I was looking forward to participating in the End to Ride
Alzheimer’s. By now my friend and riding partner, Matthew Abbate, were embarking
for the fourth year in a row. I had reason to expect that things would similar.
Each year was different. </div>
<div class="MsoNormal" style="text-indent: .5in;">
Our first year, I was asked to make
a short speech on the eve of the Ride. I spoke about my early love for cycling,
and cycling through a dangerous May storm in 1979 in the Cascades. But this
year, my fourth Ride, was a first. What happened? I am still figuring it out.
It appears that there was an important gap in certain spaces, like in the Nixon
tapes. The same process was going on in my brain. The ocean was on my left. As
long as I still could see the shore, things were normal. What I was looking for
was the entrance to the woods. In other years, I felt tranquil. But this day, I
was agitated. </div>
<div class="MsoNormal" style="text-indent: .5in;">
In other years, I looked forward to
the food stations. We were probably within fifteen minutes of the first food
station. But we were too slow. I had to pull over into a parking lot, feeling
dizzy.</div>
<div class="MsoNormal" style="text-indent: .5in;">
What else has changed?<span style="mso-spacerun: yes;"> </span>This is a big one. Month to month, I have to
be careful when I walk around Somerville. This first came to the fore in a big
way in spring 2017. At that point, I was still firmly in the early stage of the
disease. Overnight, I realized that I must be much more careful in public
alone. Back when the Red Sox won the World Series in 2013, I was confident to
go to the celebration parade alone. But in the very recent World Series (2018),
I concluded that I would be a fool to plunge into the crowds. Another distinction
is the decline in small-motor skills. The first time, in 2016, I had no problem
pinning my ID. But in recent years, I had to ask for help.</div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
Recently, I was one of four panelists
high up in one of Boston’s highest buildings. With scudding clouds passing by,
the topic was dementia. Each panelist had some form of dementia. A decade ago, dementia
was not much discussed. I’m sure that talking and learning is at an all-time
high. To me, this was quite novel. I have been on several panels. But having four
panelists with dementia was a wonder and a joy.</div>
<div class="MsoNormal" style="text-indent: .5in;">
And what about the “fog”? That was the
topic of a recent book, from a novice writer. For me, fog is not a major
concern, at least for now. What did strike me was a visit to my Mom’s care
facility north of Seattle in 2013. At that time, I was already showing signs of
cognitive decline and worse. Then I saw a man, quite demented. </div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="mso-spacerun: yes;"> </span>He seemed out of Greek mythology. He was
half-naked. I could infer that he was quite demented. Later, I could infer that
the man was at the final destination. Thus did my first lesson in dementia
studies conclude. I pitied him. He must have been very dizzy. But at the time,
he also disturbed me.</div>
<div class="MsoNormal" style="text-indent: .5in;">
And these days, I have to be
careful when I walk alone. That is my biggest vulnerability these days. So, I
make a point to walk only on familiar routes.</div>
<div class="MsoNormal">
<br /></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-25739870405188516032019-07-16T08:12:00.000-07:002019-07-16T08:24:00.746-07:00Winding Down<style>
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<div class="MsoNormal">
When I got my diagnosis in June 2015, the only thing I knew
about Alzheimer’s was that there was no cure. But I was eager to learn.
Vaguely, I began to learn about the disease. One painful error was the
relationship between Alzheimer’s and CTE (chronic traumatic encephalopathy).
</div>
<div class="MsoNormal" style="text-indent: .5in;">
There were distinct pathologies. At
that time, I was in touch with Steve DeWitt, a former high school football
player. Both Steve and I played high school football in Bellingham, Washington.
For a year or so we both thought we had head trauma caused by football. But we
were playing in the wrong arena. Somehow, we both conflated Alzheimer’s with
CTE, a much more fearsome adversity. So, stumbling as we walked, we began to
understand the real opponent: Early-onset Alzheimer’s. Then something sad
occurred. Steve began to slow down. This process, of course, was irreversible. </div>
<div class="MsoNormal" style="text-indent: .5in;">
And now, I am slowing down. And
Steve is having a very hard time.<span style="mso-spacerun: yes;"> </span>My
goal is to get my book about Alzheimer’s in print sometime in 2020. But this is
not a race.<span style="mso-spacerun: yes;"> </span>And without my wife, Paula,
there would no book at all. Her copy-editing and proofreading: those skills
used be mine as well.</div>
<div class="MsoNormal" style="text-indent: .5in;">
What can I do to help? Channeling
the Hippocratic oath, <i style="mso-bidi-font-style: normal;">do no harm. </i>In
the early years of the blog, I didn’t need a lot of help, other than Paula’s
proofreading. But during the last two months, things seem to be cratering. The
Evich men—my late father, my brother, and I—have dealt with anxiety.</div>
<div class="MsoNormal" style="text-indent: .5in;">
Now, I am confronting the “fog.”
This is fairly common with Alzheimer’s. Recently I reviewed a book largely on
this phenomenon. Several years ago, I was visiting my mom at her assisted-care
facility. It was the first time that I saw someone with obvious dementia. </div>
<div class="MsoNormal" style="text-indent: .5in;">
He seemed to float in the room, like
something from Greek myth. Did he stuff cotton in his ears? His journey was
almost done. But we mortals must cherish our time. Turn off your phones, and
tend to your souls.</div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com2tag:blogger.com,1999:blog-5952957822589264662.post-27716466163698155512019-06-07T11:03:00.000-07:002019-06-07T11:05:57.086-07:00Fog<style>
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<div class="MsoNormal">
<span style="font-family: "georgia"; font-size: 14.0pt;">Alfred
Johnson is not a professional writer. But this former Oregon State Trooper
knows how to tell a tale in his book </span><span class="st"><i style="mso-bidi-font-style: normal;"><span style="font-size: 14.0pt;">Unmerciful </span></i></span><i><span style="font-family: "cambria"; font-size: 14.0pt;">Fog</span></i><span class="st"><i style="mso-bidi-font-style: normal;"><span style="font-size: 14.0pt;">: My Journey
with </span></i></span><i><span style="font-family: "cambria"; font-size: 14.0pt;">Alzheimer's</span></i><span class="st"><span style="font-size: 14.0pt;"> <i style="mso-bidi-font-style: normal;">Disease
</i></span></span><i><span style="font-family: "cambria"; font-size: 14.0pt;">Dementia</span></i><span style="font-family: "georgia"; font-size: 14.0pt;">. And both of us were commercial
fishermen in the Northwest. In 1975, my dad granted me a full share of the
salmon catch, in the waters of north Puget Sound. And in the late 1980s, I made
good money fishing in Southeast Alaska. For Johnson, it was the coast of
Oregon. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: "georgia"; font-size: 14.0pt;">There are two subjects that are precious to Johnson. The
first is hunting. But since his diagnosis, Johnson has turned a new leaf. Now
he enjoys nurturing kittens. Dementia can do strange things to the human brain.
I happen to be a churchgoer. But to Johnson, religion is central to his identity.
This is when Johnson’s narrative comes fully alive in a big way. And sometimes
people with dementia are not reliable narrators. Just weeks after my diagnosis,
I was summoned to jury duty. At that time, my mind was still nimble. Those days
are long gone. I asked my wife, Paula, if I could serve on the jury, if chosen.
Paula quickly shot down the idea. No one with any form of dementia can serve on
a jury. The reason, of course, is that jury people have to have to be competent.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: "georgia"; font-size: 14.0pt;">The background of this section appears during a hunting </span></div>
<div class="MsoNormal">
<span style="font-family: "georgia"; font-size: 14.0pt;">outing.
It appeared that Johnson is hunting alone. Or is he? He can hear the highway,
parallel to him. Chapter II is quite impressive. The chapter header is <i style="mso-bidi-font-style: normal;">The Train Has Left the Station</i>. This is
when Johnson’s talents come to the fore.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: "georgia"; font-size: 14.0pt;">Johnson had been a big-game hunter for more than three decades.
But his tastes have changed. The larger transformation was a deeply religious
one. My favorite scene in the book involves Johnson getting lost in the woods. Long
before I was diagnosed, I had a very poor short-term memory, and now the idea
of being in the woods alone terrifies me. The venue was eastern Oregon, with
his friend, Dusty. “During the trip ... the thick dark layer of clouds had
descended and obscured the peaks of the mountainous landscape. I scanned the
forest for wildlife while admiring the beautiful forest.” </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: "georgia"; font-size: 14.0pt;">But things did not remain bucolic. According to Johnson, after
stalking a deer, he realized he was lost. “After wandering aimlessly through the
forest a while, I arrive at a hilltop that provided a good landmark vantage
point,” but he then realizes he “had walked in a circle.” He then feels a
sensation many people living with dementia will recognize, “My anxiety level
rises as darkness begins to engulf me, and I continue the desperate hike toward
the sound of the elusive highway. I finally realize that the sound is not
highway noise, but rather, the wind blowing through the trees.” Johnson stops
and prays at that moment, and gains “a sense of inner strength” that helps him
to keep walking on. With renewed hope, he “ponder[s] which direction will most
likely lead me to the highway,” and just then he hears an old truck
approaching. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: "georgia"; font-size: 14.0pt;">Johnson is alluding to Christian doctrine. “When I arrive
at the passenger door, the man in pleasant tone, states, ‘My son, walk down the
road, the highway is 3 miles, you can’t miss it.’” Johnson interprets the man’s
arrival as a sign that “Jesus Christ had answered my prayers to encounter an
angel.”</span></div>
<span style="font-family: "georgia"; font-size: 14.0pt;">I do have one criticism: Subtle readers should
be able to figure out things on their own. But I salute my fellow writer. It is
quite an act for a novice writer. And, my sense is that Johnson wants readers,
as almost all writers do. But Johnson, I suspect, doesn’t aim for a large
audience. His<i style="mso-bidi-font-style: normal;"> </i>audience is God.</span>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-49320316625269989482019-06-03T12:46:00.000-07:002019-06-03T12:46:22.185-07:00Too many genes, Revised Version
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<div class="MsoNormal">
I posted the rough draft of “Too Many Genes” on May 10. Here
is the revised post, about Randy and Mary and their family’s experience with
Alzheimer’s. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
After I was diagnosed with early-onset Alzheimer’s disease
in 2015, I was puzzled.<span style="mso-spacerun: yes;"> </span>The year before
I had been doing research for a writing project about my forebears in the
Northwest. Here is what I learned. With the exception of my grandfather, who
died in a logging accident in 1940, there was no smoking gun among my
grandparents. I hadn’t learned yet that Alzheimer’s can be caused by
environmental causes. My dad was a commercial fisherman. One theory of mine is
that as a small boy, I often accompanied my dad to his web shed, where toxic
fluids were kept in the harbor. That was my theory. But that was irrelevant. </div>
<div class="MsoNormal" style="text-indent: .5in;">
But Randy Garten and Mary Bessmer
don’t need evidence at all. Randy’s family tree is riddled with cases of
Alzheimer’s, going back to the era when people rarely called it “Alzheimer’s.”
His mother and his<span style="mso-spacerun: yes;"> </span>maternal grandfather
and great-grandfather all had the disease. Randy’s father also said there was
some Alzheimer’s on his side of the family, but did not go into specifics. One
euphemism used back then was “hardening of the arteries,” as if it was a
concern of the heart and lungs. There was a stigma against people with
dementia.</div>
<div class="MsoNormal" style="text-indent: .5in;">
Mary said, “I saw stigma within
Randy’s family as much as outside. Randy’s Dad seemed ashamed as well as
depressed and frustrated by the disease. He was a precise, organized engineer
who valued hard work. He saw the glass as half-empty rather than half-full. He
would quiz his wife (who had dementia) about what she had for dinner the night
before and felt badly that she didn’t remember. He found her repetitive actions
without accomplishing anything useful to be a terrible thing.”</div>
<div class="MsoNormal" style="text-indent: .5in;">
At the same time, Mary said,<b style="mso-bidi-font-weight: normal;"> “</b>Randy’s Dad did see caring for his
wife as his special responsibility and mission. Although he struggled with
depression, he managed to care for her at home until the last six weeks of her
life. After her death, Dad began to notice some of Randy’s memory lapses and
began to fret about Randy having the full-blown disease too, although at that
time Randy’s diagnosis was mild cognitive impairment.” </div>
<div class="MsoNormal" style="text-indent: .5in;">
Two years later, during the final
year of his life (2016), Randy’s Dad said to Mary privately, “I won’t be able
to stand it if Randy has Alzheimer’s like [my wife] did.”<span style="mso-spacerun: yes;"> </span>Mary said, “He mourned this possibility and
seemed to feel guilty about perhaps giving it to Randy through his own family
genetics. Because of Dad’s depression and suicidal ideation, we never informed him
about Randy’s Alzheimer’s diagnosis at age 63.”</div>
<div class="MsoNormal" style="text-indent: .5in;">
Sadly, Randy’s dad was clairvoyant,
despite his Alzheimer’s. Randy did have Alzheimer’s: Randy himself was
diagnosed in 2016, and left his longtime position in the state Health and Human
Service Department, working under Alice Bonner in the state administration of
Charlie Baker.</div>
<div class="MsoNormal" style="text-indent: .5in;">
But what about the stigma? Over the
last two decades, there have been leaps and bounds in understanding this
disease. But when a young adult learns that he or she is likely to end up with
Alzheimer’s in middle age: That could stress the parent-child relation in a
very big way. </div>
<div class="MsoNormal" style="text-indent: .5in;">
Of course, it’s possible that Alzheimer’s
will find a cure and the generation of Randy and Mary’s kids could benefit in a
huge way. <span style="font-family: Georgia;">Are you</span> skeptical? Over the
last 18 months, there was serious hype about ending Alzheimer’s. And if you are
one of those adults whose families has the APOE4 gene: Don’t become fatalistic.
Money speaks. And one of these years, there will be a sea-change.</div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-77758255495676016752019-05-10T06:47:00.000-07:002019-05-10T06:47:11.685-07:00Too many genes
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<div class="MsoNormal">
After I was diagnosed with early-onset Alzheimer’s disease
in 2015, I was puzzled.<span style="mso-spacerun: yes;"> </span>The year before
I had been doing research for a writing project about my forebears in the
Northwest. Here is what I learned. With the exception of my grandfather, who
died in a logging accident in 1940, there was no smoking gun among my
grandparents. I hadn’t learned yet that Alzheimer’s can be caused by
environmental causes. My dad was a commercial fisherman. One theory of mine is
that as a small boy, I often accompanied my dad to his web shed, where toxic
fluids were kept in the harbor. That was my theory.<span style="mso-spacerun: yes;"> </span>But that was irrelevant. </div>
<div class="MsoNormal" style="text-indent: .5in;">
But Randy Garten and Mary Bessmer
don’t need evidence at all. The couple’s tree is riddled with cases of
Alzheimer’s, going back to the era when people rarely called it “Alzheimer’s.”
One euphuism was “hardening of the arteries,” as it was<span style="mso-spacerun: yes;"> </span>a concern of the heart and lungs. As Mary put
it: “I couldn’t stand Randy’s dad in his<b style="mso-bidi-font-weight: normal;">
</b>final<b style="mso-bidi-font-weight: normal;"> </b>months<b style="mso-bidi-font-weight: normal;">. </b>And he said, “Randy will have it too.” Sadly, Randy’s dad was
clairvoyant, despite his Alzheimer’s. Randy did had Alzheimer’s: Randy himself
was diagnosed in 2016: Randy left his job from his longtime position in the
state Health and Human Service Department, working under Alice Bonner in the state
administration of Charlie Baker.</div>
<div class="MsoNormal" style="text-indent: .5in;">
For families like Randy’s and
Mary’s, it can be difficult to unravel to understand the relationships. After
all, genealogy can span beyond a century or more. Who was “Big Al?” Did his
name suit him?<span style="mso-spacerun: yes;"> </span>And what about Maurice? Might</div>
<div class="MsoNormal">
that name still in currency? But what about the stigma? Over
the last two decades, there have been leaps and bounds in understanding this
disease. But when a young adult learns that he or she is likely to end up with
Alzheimer’s in middle age: That could stress the parent-child relation in a
very big way. </div>
<div class="MsoNormal" style="text-indent: .5in;">
Of course, it’s possible that
Alzhiemer’s will find a cure will find in the generation of Randy’s and Mary’s
kids benefit in a huge way. <span style="font-family: Georgia;">Are you</span>
skeptical? Over<span style="mso-spacerun: yes;"> </span>the last 18 months,
there was serious hype about ending Alzheimer’s. And if you are of those one
those adults whose families has the APOE4 gene. Don’t become fatalistic. Money
speaks. And one of these years, there will be a sea-change.</div>
<div class="MsoNormal" style="tab-stops: 283.5pt; text-indent: .5in;">
The Mediterrean
Diet is not some fad. <span style="mso-spacerun: yes;"> </span>The evidence is
in. <span style="mso-spacerun: yes;"> </span>And it does have its drawbacks. Many
people can’t<span style="mso-spacerun: yes;"> </span>the taste can’t abide, even
when herbs like rosemary or thyme. And, if you are fairly heathy, walking is a
simple way to improve one’s mood. <span style="mso-spacerun: yes;"> </span>Just
remember, if you are walking on your own, you better be familiar with the
route. Cellphones can literally save lives, but if you don’t charge your phone battery,<span style="mso-spacerun: yes;"> </span>you can end up like I did: Having my college-age
son bail me out. The result would have been impoundment in the nation’s
capital. How priceless would have<span style="mso-spacerun: yes;"> </span><i style="mso-bidi-font-style: normal;">that </i>have been?</div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-83141199562863702522019-04-19T09:45:00.001-07:002019-04-19T09:45:26.653-07:00Comfort zone
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<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;">As I go
around my days, I am usually careful when I sense that I might be moving into
unfamiliar places. In Somerville, where I have lived for decades, it would
be difficult for me to get lost. Not long after my diagnosis, I started doing a
very simple 30-minute walk. I start from my home and walk in a rectangle until I am back on my street. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">There are other walks, embedded in my long-term memory.
One is more challenging. There is a sky bridge, over Route 28, which connects
east Somerville with the rest of the city. I hadn’t done it recently. It takes
me into Boston. But the path ends at that point. Another route takes me past Tufts University, where Paula studied in the graduate English program.</span><span style="font-family: Georgia; font-size: 14.0pt;"> I don’t have to think about where I am. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">It’s a good
70-minute walk, overall, comparable to the route of The Walk to End Alzheimer’s
fundraiser. Foolishly, last September, I did the Walk, despite having a
deformed sole on my right shoe. It was months before I could walk normally
without pain. Another route of mine follows Massachusetts Avenue, which is my
umbilical cord. Sometimes I need to relieve myself. And let’s just say that my
prostate gland is not what it used to be. In 2o16, at the end of a vacation in
Puget Sound, my cousin’s husband had cooked up a vat of steel-cut oats. I love
steel-cut oats. They are very nourishing, and I aim to cook them once a week.
But I have to be careful. Like my dad, I struggle with my prostate gland. I know
from experience that it can be serious. But that morning, I didn’t take into account the Seattle-area traffic. If I was on a bus, the bus would have had a
toilet. But I was riding in a van. One woman on the van offered me an empty
plastic bottle to collect my urine. </span><br /><span style="font-family: Georgia; font-size: 14.0pt;"></span>
</div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;"></span><span style="font-family: Georgia; font-size: 14.0pt;">T</span><span style="font-family: Georgia; font-size: 14.0pt;">here probably would have been a toilet along the route. But the van lacked
that service. We were on Interstate 5, heading toward the airport. Remember
those O.J. Simpson commercials running through airports? That’s what I was doing
in that early-morning dash to find the first restroom. My goal: don’t wet myself. Goal
fulfilled.</span>
</div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">What about cooking? Over the last week I was alone
in our house for a few days, while Paula and our daughter were away.
I had dinner with friends every evening, and the first few days, I made canned sockeye salmon sandwiches for lunch. Canned
salmon can be fairly costly. The dressing I make is from scratch: olive oil and
a smaller volume of balsamic vinegar. And there was an incident, but nothing
came out of it. I was eating my five-minute oatmeal at the time. I received a
landline phone call. It turned out to be from Paula. In any case, this incident was barely worth
reporting. The electric burner was cherry-hot, but that was no great concern. I
removed the pan from the burner and shut it off.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;"> </span><span style="font-family: Georgia; font-size: 14.0pt;"></span><span style="font-family: Georgia; font-size: 14.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS 明朝"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;"><span style="mso-spacerun: yes;"></span>What
about going though security at airports or <span style="mso-spacerun: yes;">government</span> buildings? I still yearn for my tan
leather jacket, which I lost in 2o15, not long before my diagnosis, and I suggest my jacket
is now the property of some airport employee. And in downtown Boston, a couple
of years ago, I encountered a guard who seemed to want absolute proof that I
had dementia. Who can say? Unless the person is acting in a strange manner. Only
in the late nursing-stage do people with Alzheimer’s display typical symptoms:
vacant stares, dizziness. And there are two activities that can be enjoyed to
the terminal stage: Art and music.</span>
</div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-29702160862011040912019-04-12T07:27:00.000-07:002019-04-12T07:27:50.708-07:00$290 billion
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<div class="MsoNormal" style="tab-stops: 139.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;"> </span><span style="font-family: Georgia; font-size: 14.0pt;">This was not the first time that Paula and I had traveled
to Washington to advocate in the nation’s capital on behalf on Alzheimer’s and
other forms of dementia. But this time more was as stake. In 2016, most people
assumed that Hilary Clinton would be our next president. More important, in
terms of health care, Clinton would have continued “Obamacare,” or something
very similar. Instead, we got a president who has seemed at times to barely
know his own mind. For Paula and me, the stakes couldn’t be higher. And that’s
why when Paula spotted Senator Susan Collins, Paula immediately engaged in a
discussion about health care. Keep in mind<span style="mso-spacerun: yes;">
</span>that Collins is an endangered species: A moderate Republican. That
wasn’t the case a generation ago. But over the decades, polarization has taken
its toll.</span>
</div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">And the real topic in Washington recently was the number
of people who advocated on behalf of Alzhiemer’s disease. Under the banner of
purple, Republicans and Democrats, engaged with lobbying. Elizabeth Warren made
an appearance, but made no political message. At one point, Warren reached out
to us with a handshake and a hug.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">And if you want to know about everything about Alzheimer’s
and other similar diseases, this is where you go: The <i style="mso-bidi-font-style: normal;">2019 Alzheimer’s Disease and Facts and Figures. </i>If you want to get
a copy, I suggest you that you reach out to your local Alzheimer’s chapter to</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">Here is a huge fact: Hours of unpaid Care and Economic
value: more than more than $<i style="mso-bidi-font-style: normal;">18.5 billion.
</i>Why women? The pat answer is, women have always done the dirty work. And I
do mean <i style="mso-bidi-font-style: normal;">dirty. </i>When my dad was dying
at age 86, from congestive heart failure, it struck me that his death was a
rather clean death, compared to what I should expect for my own demise. But
dying without my marbles is deeply discouraging. But that’s what Alzheimer’s
has dealt. And that is no surprise. I am fortunate to be where I am. Sure, I
will probably die a dreary death. But, I have been told that Alzheimer’s is a
relative painless way to die. And that is probably true. But certainly, it
won’t be a noble death, like dying in the battle of Austerlitz. No, we have to
move into farce to fully appreciate this disease. Do you see Woody Allen being
shot out of a cannon? How clever! The man who fears everything. That’s what
living with Alzheimer’s is like. Absolut farce.</span></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-75649467586970087952019-03-12T07:35:00.000-07:002019-03-12T07:35:35.681-07:00Homage to Pat Summitt
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<div class="MsoNormal">
<span style="font-size: 14.0pt;">As many sports fans know, Pat
Summitt was an amazing basketball coach. Scanning Wikipedia falls short to
explain how successful Summit really was. Yes, she won a silver medal in the
Montreal Olympics, as a player, in 1976, but her destiny was to become one of
the greatest basketball coaches of all time. Over the decades, the
championships kept piling up. You would have to go back to the era of John
Wooden at UCLA when to find an apt comparison. From the early 1970s, to find a
coach who was so fabulously successful. <span style="mso-spacerun: yes;"> </span>Better
to recall the good days, when her players—most of them—adored <span style="mso-spacerun: yes;"> </span>her. Why wouldn’t they. Sure, there must have
been rivalries among the players, but that is typical.</span></div>
<div class="MsoNormal">
<span style="font-size: 14.0pt;">But here are some<span style="mso-spacerun: yes;"> </span>examples, from Coach Sumitt. Candace Parker
was the star of that team, from 2004 to 2008. Parker also was the first
women<span style="mso-spacerun: yes;"> </span>to dunk in an NCAA tournament.</span></div>
<div class="MsoNormal" style="text-indent: 31.5pt;">
<span style="font-size: 14.0pt;">Summitt
had several sayings.</span></div>
<div class="MsoNormal" style="text-indent: 31.5pt;">
<i style="mso-bidi-font-style: normal;"><span style="font-size: 14.0pt;">Attitude is a choice. What you can think
you can do, whether positive or negative, confident, or scared, will most
likely happen.</span></i><span style="font-size: 14.0pt;"> In a more aggressive
stance, Summitt would say, <i style="mso-bidi-font-style: normal;">Here’s how I’m
going to beat you. That it. </i>And finally, <i style="mso-bidi-font-style: normal;">It’s harder to stay to on the top than it is to make the climb.
Continue to seek new goals.</i></span></div>
<div class="MsoNormal" style="text-indent: 31.5pt;">
<span style="font-size: 14.0pt;">And
keep in mind that Summitt was living with the disease, without knowing it. And
it seemed that her case had moved fairly swiftly. What a shame. She was
diagnosed in 2011 at age 59. What<span style="mso-spacerun: yes;"> </span>a
terrible loss . Others have gone on to live in with many years in relative good
mental health.<span style="mso-spacerun: yes;"> </span>Pat Summitt was robbed.<span style="mso-spacerun: yes;"> </span>But she would not have put it that way. After
all, the team is called the “<i style="mso-bidi-font-style: normal;">Lady</i> Volunteers.”
</span></div>
<div class="MsoNormal" style="text-indent: 31.5pt;">
<br /></div>
<div class="MsoNormal" style="text-indent: 31.5pt;">
<span style="font-size: 14.0pt;">Also
in the spring edition is a feature about myths about Alzheimer’s</span><span style="font-family: Georgia; font-size: 14.0pt;">. Progress continues, but there
are still pockets where some people are in denial. Accordingly, <i style="mso-bidi-font-style: normal;">ALZ </i>has published a “myth or fact”
feature. </span><span style="font-size: 14.0pt;"></span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">The most misleading of the “facts” is that Alzheimer’s is
just another part of aging. Even doctors, in the early years of the 21st
Century, most doctors thought that senility was a normal process of aging. And
even more hoary was the claim that one could not die from Alzheimer’s. The next
“myth” is close to my heart. “Only old people get Alzheimer’s.” Well, I have
been writing a book about early-onset<span style="mso-spacerun: yes;"> </span>Alzheimer’s
over the past several years.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">At least the myth about aluminum can sounds plausible. But
there is no evidence whatsoever that flu shots can contribute to dementia. The
last “myth” noted is more subtle: “It would be wonderful if a particular food
or supplement could delay or prevent Alzheimer’s disease, but we do not have
the science evidence that these claims are true. “We need clinical trials to
evaluate whether any food or supplement will have…It is unlikely that one food
or supplement will have a significant supplement. The Alzheimer’s Association
encourages everyone to eat a healthy diet and balanced.”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">Also in this issue, Candace Parker, one of the great
women’s college basketball teams, leading to the Ladies Vols to two championships.
Then came the devastating news: Summit was diagnosed with early-onset
Alzheimer’s. There are about 200,000 cases in the United States. But back to
back are two features. The first one is “Ask us.” The writer asked this: My
78-year sister hasn’t been herself. Her house has always really neat and tidy
last time I visited it was a mess! It didn’t look at all at the place she for
more than 50 years….I’m worried something more is going on.”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">And here is the reply: “As someone who knows, you are
right to be concerned. When there are distinct changes in a person’s behavior…With
that said, it can be difficult to approach someone with your concerns and recommendation.
Sometimes people may not see changes in themselves. If you are holding this
magazine in your hands, you can just look at the next at page. The title is “10
steps to memory concerns: </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Georgia; font-size: 14.0pt; mso-bidi-font-family: Georgia; mso-fareast-font-family: Georgia;"><span style="mso-list: Ignore;">1.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><span style="font-family: Georgia; font-size: 14.0pt;">What’s the person doing or not doing
ordinary?</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Georgia; font-size: 14.0pt; mso-bidi-font-family: Georgia; mso-fareast-font-family: Georgia;"><span style="mso-list: Ignore;">2.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><span style="font-family: Georgia; font-size: 14.0pt;">What other health or lifestyle could
be a factor</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Georgia; font-size: 14.0pt; mso-bidi-font-family: Georgia; mso-fareast-font-family: Georgia;"><span style="mso-list: Ignore;">3.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><span style="font-family: Georgia; font-size: 14.0pt;">Has anyone noticed the change (or
changes)?</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Georgia; font-size: 14.0pt; mso-bidi-font-family: Georgia; mso-fareast-font-family: Georgia;"><span style="mso-list: Ignore;">4.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><span style="font-family: Georgia; font-size: 14.0pt;">Who should have the conversation?<b style="mso-bidi-font-weight: normal;"> Important! </b></span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: .75in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Georgia; font-size: 14.0pt; mso-bidi-font-family: Georgia; mso-fareast-font-family: Georgia;"><span style="mso-list: Ignore;">5.<span style="font: 7.0pt "Times New Roman";"> </span></span></span><span style="font-family: Georgia; font-size: 14.0pt;">What’s best time and place? </span></div>
<div class="MsoNormal" style="margin-left: .5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
<br /></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto;">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraph" style="margin-left: .75in; mso-add-space: auto;">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
<br /></div>
<div class="MsoNormal" style="margin-left: .5in;">
<br /></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-55871481670721817742019-02-22T11:20:00.000-08:002019-02-22T11:20:35.354-08:00When you're no longer working
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<div class="MsoNormal" style="tab-stops: 31.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">The ideal reader of my forthcoming book about early-onset
Alzheimer’s disease would have just recently been diagnosed with early-onset
Alzheimer’s disease or some similar form of dementia. Perhaps the individual is
in shock, or in denial. The statistics say that that roughly two-thirds of the
victims are women. But that can be misleading in the early-onset realm. In my
experience, men and women are usually rather balanced. Many of us were at our peak
salaries, and derived part of our identity from our job or from the idea we
were supporting ourselves and our families.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">After I left my job, I discovered that the Alzheimer’s
Association organized many stimulating activities. The rationale is that
Alzheimer’s is typically a slow-moving disease, and in some cases, people can
hang on for as long as twenty years. Of course, this is a progressive disease,
but research has shown that people can appreciate art and music even in the
terminal stage.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">Sometimes I describe the Alzheimer’s Association as a
social club, on account of all of the outings and plays, with no cost to us.
The first play Paula and I attended was a musical, based on a sliver of <i style="mso-bidi-font-style: normal;">War and Peace.</i> Tolstoy might be rolling
in his grave, but it was great entertainment. More recently, we attended an
excellent production of <i style="mso-bidi-font-style: normal;">Othello</i> at the
A.R.T. in Cambridge. As a college-writing instructor at Northeastern University
in the nineties, I became well-acquainted with Shakespeare’s greatest tragedies
including <i style="mso-bidi-font-style: normal;">Othello</i>, <i style="mso-bidi-font-style: normal;">the Moor</i>. At the time, the O.J. Simpson
trial was fresh in our minds, and it was stimulating to note the comparisons. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">The A.R.T. production was fresh. Rather than grounding the
play in the Elizabethan world, the production was set somewhat in the present
time. One scene was set in a gym where Othello and Iago worked out, with numerous
screens in the background showing global hotspots, in the CNN style.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">But this is all prologue. My objective is to explain how I
can help people who are very new to the concept of dementia. First, I would
say, “How long have you been feeling this way? Are you scared? Can you remember
when you first noticed that you didn’t feel like yourself?” These are challenging
questions. You might want to get a notepad and a comfortable chair, and write
about your reactions. Does Alzheimer’s run in your family? Even if it does,
don’t panic. My understanding is that having a parent with Alzheimer’s is just
one risk factor. You might have a higher risk than the general population. I
have seen figures suggesting that even if you do have the APOE4 gene, your risk
goes up by only roughly 40 percent. And it took some time to allay my brother’s
fears that <i style="mso-bidi-font-style: normal;">he</i> was at risk. Fortunately,
I was able to draw on Alzheimer’s Association figures and facts, and that was
the end of the conversation.</span></div>
<div class="MsoNormal" style="text-indent: 31.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">But there are other aspects in which you can drive your
destiny, at least partially. Here are a couple of examples. The first is close
to my heart, literally; it is regular exercise. I stopped jogging sometime in
my forties, partly because I sensed that I wasn’t doing my lower joints any
favors. But now I swim or walk half an hour to an hour a day.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">Another way to keep yourself sharp is to stay socially
engaged. After you leave your job, there are many ways that people with dementia
can remain engaged, from support groups to going to a place of worship to
volunteering at a senior center to meeting with friends on a regular basis.
Across the country, the Alzheimer’s Association has events to keep people
living with the disease busy and engaged. Even if you’re depressed and don’t
feel up to going out, you’ll find that being with other people who know about
and accept your diagnosis will raise your mood by helping you to stay engaged.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">Third is pursuing a healthy diet. It’s up to the people
living with the disease to make the decisions. If you like olive oil, get in
the habit of making your salad dressing. It’s quite simple. The cornerstone of
the Mediterranean Diet is olive oil. And I love dipping crusty bread in the
oil. If you are in a hurry, you can use the Paul Newman brand, but I tend to find
it too acidic. I haven’t measured this yet, but I prefer my own concoction,
which is roughly two parts olive oil, and one part balsam vinegar, with a
moderate amount of pepper.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">But this is not all about lifestyles. There are a plethora
of choices. The guiding concept is to live in the moment, and avoid self-pity.
And look for moments that others miss. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoNormal">
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Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-83442472804379784622019-01-25T07:09:00.000-08:002019-01-25T07:09:32.441-08:00Depression's role
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<span style="font-size: 14.0pt;">After I was diagnosed with
Alzheimer’s disease in 2015, I was given Aricept, one of the two main drugs for
people still in the early or middle stage. But without anyone asking me, I was prescribed
an antidepressant</span><span style="font-family: Georgia; font-size: 14.0pt;">.</span><span style="font-size: 14.0pt;"> </span><span style="font-family: Georgia; font-size: 14.0pt;">But the doctor seemed to suggest that anyone with Alzheimer’s would be
depressed. In my case, I felt much better after I left my job. In fact, within
a week, I felt much than I had for the past two years. For me, leaving my job
quickly was a godsend. </span><span style="font-size: 14.0pt;"></span></div>
<div class="MsoNormal" style="text-indent: 31.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;"><span style="mso-spacerun: yes;"> </span>My vocation as a
writer allows me to work at home. And that is one reason why I don’t often get
the blues. But the fact sheet is quite dated: 2003. That was the same year that
Joanne Koenig Coste published <i style="mso-bidi-font-style: normal;">Learning to
Speak Alzheimer’s</i>, a book that has had a huge impact in this century. Here
are some of the more relevant points. At that time, in <span style="mso-spacerun: yes;"> </span>2o percent to 40 percent with Alzheimer’s
become depressed. “Identifying depression <span style="mso-spacerun: yes;"> </span>in Alzheimer’s can be difficult. There is no
single test or questionnaire that can lead to a diagnosis.” The fact sheet notes
that apathy itself can be a symptom of depression.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">“The first step in a diagnosis is a thorough evaluation.
Side effects of medication or an unrecognized medical condition…of the
evaluation will include the person’s mental and physical state.” Key elements
include apathy, which can lead to a vicious circle. Patients may be trying, but
without a lot of support—from one’s spouse or another significant person—the
patient may lose faith that things can better. The fact sheet notes, “Dementia
itself can lead to certain symptoms commonly associated with apathy. “Cognitive
impairment may be experienced.”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">According to the fact sheet, this is what many of my
cohorts and I should expect—a slow, long trek where the victims’ families will
bury their dead. According to a group of investigators with much experience in
studying dementia, <span style="mso-bidi-font-weight: bold;">the *National
Institute of<b> </b>Mental Health proposed the diagnostic. Here are some of the
listings from the fact sheet: “Significantly depressed mood—sad, hopeless,
tearful; decreased positive feelings; social isolation; disruption in appetite
that is not related to another medical condition; disruption in sleep;
agitation or slowed or; disruption that is not related to a medical condition.</span></span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">*<i style="mso-bidi-font-style: normal;">This is not the
current name of this building.</i></span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
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Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-61868178705341937342019-01-18T07:04:00.000-08:002019-01-18T07:04:03.257-08:00A sturdy template
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<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;">She joined
Elder Affairs in June of 2014 and became involved in the Dementia Friendly
movement in 2015.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">“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. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <span style="mso-spacerun: yes;"> </span>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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-63058300832143144682019-01-11T07:39:00.000-08:002019-01-11T07:39:33.218-08:00For real?
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<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;">I first
came across Dr. Dale Bredesen in November 2016, when he was invited to appear
on the <i style="mso-bidi-font-style: normal;">Today</i> 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. </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;"><span style="mso-tab-count: 1;"> </span>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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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: “<i style="mso-bidi-font-style: normal;">Alzheimer’s disease does not
arise from the brain failing to function as it evolved to</i>”<i style="mso-bidi-font-style: normal;"> </i>[author’s italics]. And “Kristen was
Patient Zero,” according to Bredesen.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <i style="mso-bidi-font-style: normal;">i</i>s.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">So what are my options?<span style="mso-spacerun: yes;">
</span>Be stubborn? I’d be a fool <i style="mso-bidi-font-style: normal;">not</i>
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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;"><span style="mso-spacerun: yes;"> </span></span></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-83576067499680967952018-12-28T14:00:00.000-08:002018-12-28T14:00:48.738-08:00AIDS in the eghties<style>
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<div class="MsoNormal">
<span style="font-size: 14.0pt;">Not long<span style="mso-spacerun: yes;"> </span>after I was diagnosed with early-onset
Alzheimer’s, a gay<span style="mso-spacerun: yes;"> </span>colleague of mine
invited me</span><span style="font-family: "georgia"; font-size: 14.0pt;"> 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<span style="mso-spacerun: yes;"> </span>the affair. My aim was to compare Alzheimer’s
to AIDS. But the comparison struck as <span style="mso-spacerun: yes;"> </span>too
facile. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: "georgia"; font-size: 14.0pt;">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. <i style="mso-bidi-font-style: normal;">Personal Dispatches:
Writers’ Confront AIDS.</i> My favorite by far was <i style="mso-bidi-font-style: normal;">The Fear</i>. And why not? 1987 was the year, but know one knew when a breakthrough,
if ever. The challenge<span style="mso-spacerun: yes;"> </span>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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: "georgia"; font-size: 14.0pt;">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</span></div>
<div class="MsoNormal">
<span style="font-family: "georgia"; font-size: 14.0pt;">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…<i style="mso-bidi-font-style: normal;">and</i> 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.”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: "georgia"; font-size: 14.0pt;">And I was glad to learn that Andrew Holleran had survived
the plague of AIDS. What a fine writer he is.</span></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-86551666044477778282018-12-21T06:49:00.000-08:002018-12-21T06:49:55.332-08:00Too many layers
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<span style="font-family: Georgia; font-size: 14.0pt;">Jeff Kramer and I have been friends since we met on the <i style="mso-bidi-font-style: normal;">Western Front</i>, the campus newspaper of
Western Washington University.</span></div>
<div class="MsoNormal" style="tab-stops: -4.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">A decade later, Jeff almost perished in the 1991 riots in
Los Angels, working as a stringer. I remember getting my copy of the <i style="mso-bidi-font-style: normal;">Boston Glob</i>e<i style="mso-bidi-font-style: normal;"> </i>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.</span></div>
<div class="MsoNormal" style="tab-stops: -4.5pt .5in; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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. <span style="mso-spacerun: yes;"> </span>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.</span></div>
<div class="MsoNormal" style="tab-stops: -4.5pt .5in; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.
</span></div>
<div class="MsoNormal" style="tab-stops: -4.5pt .5in; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="tab-stops: 0in 4.5pt 1.25in; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;"><span style="mso-spacerun: yes;"> </span>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 <span style="mso-spacerun: yes;"> </span>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.</span></div>
<div class="MsoNormal" style="tab-stops: 9.0pt 1.25in; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <i style="mso-bidi-font-style: normal;">was </i>functioning. All I had do to was to
turn it on. </span></div>
<div class="MsoNormal" style="tab-stops: 9.0pt 1.25in; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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<span style="mso-spacerun: yes;"> </span>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<span style="mso-spacerun: yes;"> </span>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. </span></div>
<div class="MsoNormal" style="tab-stops: 9.0pt 1.25in; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-77683819548165490192018-12-18T14:01:00.000-08:002018-12-18T14:01:26.397-08:00An American orginal
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<div class="MsoListParagraphCxSpFirst" style="margin-left: 0in; mso-add-space: auto;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <span style="mso-spacerun: yes;"> </span>literary
spotlight. And don’t be fooled by the exotic name. He is an American original.
In the same way, say<span style="mso-spacerun: yes;"> </span>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<span style="mso-spacerun: yes;">
</span>Swift’s story, “A Modest Proposal,” in which the narrator suggested that
to end a food shortage, people should<span style="mso-spacerun: yes;">
</span>consume babies.</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">The first
story of Adjei-Brenyah starts with Emmanuel a young black man hoping to get
into a<span style="mso-spacerun: yes;"> </span>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<span style="mso-spacerun: yes;">
</span>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. </span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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. </span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">“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.</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">“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.</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">“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. <span style="mso-spacerun: yes;"> </span>And the son’s reply was, “I don’t know.”</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">The last
of these twelve stories is the most powerful.</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.”
<span style="mso-spacerun: yes;"> </span>goes on. “Transcending is like a tryout.”
</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 0in; mso-add-space: auto; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.”</span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 0in; mso-add-space: auto; text-indent: .5in;">
<br /></div>
<div class="MsoNormal">
<br /></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-38810653539287819562018-11-30T05:44:00.000-08:002018-11-30T05:44:19.832-08:00Use it or lose it
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<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;">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, </span></div>
<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;">I have been
intense.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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<span style="mso-spacerun: yes;"> </span>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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">And in the years ahead, <span style="mso-spacerun: yes;"> </span>I will be busy cataloging<span style="mso-spacerun: yes;"> </span>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.</span></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-67140518345819407082018-11-02T06:48:00.000-07:002018-11-02T06:48:18.541-07:00Learning to speak
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<br />
<span style="font-family: Georgia; font-size: 14.0pt;">When
Joanne Koenig Coste published her book, <i style="mso-bidi-font-style: normal;">Learning
to Speak Alzheimer’s</i>, in 2003,<i style="mso-bidi-font-style: normal;"> </i>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.</span>
<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;"><span style="mso-spacerun: yes;"> </span>“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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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<span style="mso-spacerun: yes;"> </span>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.”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <span style="mso-spacerun: yes;"> </span>Patients’ world—a variant of “the customer is
always right.” And during this era, she was raising four children, ranging from
four to sixteen.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">A key word for this book is <i style="mso-bidi-font-style: normal;">habilitation</i>,<i style="mso-bidi-font-style: normal;"> </i>defined as
an approach to caring<span style="mso-spacerun: yes;"> </span>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<span style="mso-spacerun: yes;"> </span>world of Alzheimer’s that my cohorts and I are
living in today.</span></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-2601229991412832522018-10-12T08:04:00.000-07:002018-10-12T08:04:54.142-07:00Reading comprehension
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<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;">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?</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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,<b style="mso-bidi-font-weight: normal;"> </b>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 <i style="mso-bidi-font-style: normal;">Underworld</i> 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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;"><span style="mso-spacerun: yes;"> </span>Pre-Alzheimer’s, I
only skimmed if I found the writer boring.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">DeLillo’s<i style="mso-bidi-font-style: normal;"> The Names </i>is
only about 340 pages, but it is the opposite of a fast read. I decided to peek
at the original review in <i style="mso-bidi-font-style: normal;">The New York
Times</i>, which appeared in 1982. The reviewer described the book as a “brilliant,
ultimately rather elusive meditation on America’s place in the world.”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">First, it is a work of fiction, but not a mainstream fiction.
Some of DeLillo’s novels are dark comedies, and <i style="mso-bidi-font-style: normal;">White Noise</i> is probably his most popular book, on account of its
dark comedy. But <i style="mso-bidi-font-style: normal;">The Names </i>was the
book that made him a prominent writer in 1982.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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: <i style="mso-bidi-font-style: normal;">They did not
reduce speed when driving in reverse</i>.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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?’”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">“The other person says, casually, “Eat your eggs.” </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">“You haven’t thought that far ahead?”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">“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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<br /></div>
<span style="font-family: Georgia; font-size: 14.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS 明朝"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;">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 <i style="mso-bidi-font-style: normal;">The Names </i>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.</span>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-19891931357182796112018-10-05T06:59:00.000-07:002018-10-05T06:59:43.998-07:00Beware of screens
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<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;"><span style="mso-spacerun: yes;"> </span>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 <i style="mso-bidi-font-style: normal;">murder investigation. </i>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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <i style="mso-bidi-font-style: normal;">any way </i>to retain my files. At that time, ignorance was something
approximating bliss.)</span></div>
<span style="font-family: Georgia; font-size: 14.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS 明朝"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;">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.</span>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-78109523357438435092018-08-24T06:55:00.000-07:002018-08-24T06:55:52.567-07:00First in the nation
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<br />
<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <i style="mso-bidi-font-style: normal;">Boston Globe</i>
or <i style="mso-bidi-font-style: normal;">State House News</i>. 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 <i style="mso-bidi-font-style: normal;">Globe</i> through its
partnership with STAT, reporting on health and medicine, has shed much light on
Alzheimer’s and other forms of dementia. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <i style="mso-bidi-font-style: normal;">Globe</i> 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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <i style="mso-bidi-font-style: normal;">Globe</i>
writer of the article, Felice J. Freyer, noted, it typically takes a year or
two to tease out a diagnosis.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.”</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<span style="font-family: Georgia; font-size: 14.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS 明朝"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;"><span style="mso-tab-count: 1;"> </span>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.</span>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-47103580225239294762018-08-10T08:15:00.000-07:002018-08-10T08:15:39.887-07:00Sequential steps
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<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;"></span><span style="font-family: Georgia; font-size: 14.0pt;"></span><span style="font-family: Georgia; font-size: 14.0pt;">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.” </span>
</div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <i style="mso-bidi-font-style: normal;">did </i>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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <i style="mso-bidi-font-style: normal;">did escape</i>. I<i style="mso-bidi-font-style: normal;"> </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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-32948220263453211832018-07-27T07:19:00.000-07:002018-07-27T07:19:36.981-07:00The preclinical phase
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<span style="font-family: Georgia; font-size: 14.0pt;">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 <i style="mso-bidi-font-style: normal;">Boston Globe</i> 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 <i style="mso-bidi-font-style: normal;">pre</i>: 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.</span>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.<span style="mso-spacerun: yes;"> </span>As Kendall observed, <span style="mso-spacerun: yes;"> </span>“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<span style="mso-spacerun: yes;"> </span>Alzheimer’s
arises from what Kendall describes as “the complex interplay between genetic
and environmental risk factors.” I myself, over the last three years<span style="mso-spacerun: yes;"> </span>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<span style="mso-spacerun: yes;"> </span>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.<span style="mso-spacerun: yes;"> </span>And even Reisa Sperling couldn’t
change that. For many of<span style="mso-spacerun: yes;"> </span>my generation
of people with early-onset Alzheimer’s, the sand is slipping through the
hourglass. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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. </span></div>
<div class="MsoNormal">
<br /></div>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-45842142646351494962018-07-13T07:09:00.000-07:002018-07-13T07:09:35.605-07:00A breakthrough
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<div class="MsoNormal" style="tab-stops: 166.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 </span></div>
<div class="MsoNormal" style="tab-stops: 166.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <span style="mso-spacerun: yes;"> </span>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.</span></div>
<div class="MsoNormal" style="tab-stops: 166.5pt; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<div class="MsoNormal" style="tab-stops: 166.5pt; text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.” </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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. </span></div>
<div class="MsoNormal" style="text-indent: .5in;">
<span style="font-family: Georgia; font-size: 14.0pt;">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. </span></div>
<span style="font-family: Georgia; font-size: 14.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS 明朝"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;">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</span>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0tag:blogger.com,1999:blog-5952957822589264662.post-88348236327417152912018-07-06T07:46:00.000-07:002018-07-06T07:46:34.800-07:00Ups and downs
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<div class="MsoNormal">
<span style="font-family: Georgia; font-size: 14.0pt;">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 <i style="mso-bidi-font-style: normal;">Alzheimer’s Through the Alphabet: One
Journey of Ups and Downs</i>. 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. </span></div>
<div class="MsoNormal" style="text-indent: 40.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.”</span></div>
<div class="MsoNormal" style="text-indent: 40.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">“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.” </span></div>
<div class="MsoNormal" style="text-indent: 40.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.”</span></div>
<div class="MsoNormal" style="text-indent: 40.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">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?</span></div>
<div class="MsoNormal" style="text-indent: 40.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.” </span></div>
<div class="MsoNormal" style="text-indent: 40.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.’” </span></div>
<div class="MsoNormal" style="text-indent: 40.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.’” </span></div>
<div class="MsoNormal" style="text-indent: 40.5pt;">
<span style="font-family: Georgia; font-size: 14.0pt;">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.</span></div>
<span style="font-family: Georgia; font-size: 14.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-bidi-theme-font: minor-bidi; mso-fareast-font-family: "MS 明朝"; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-fareast;">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.</span>
Mitch Evichhttp://www.blogger.com/profile/08298454310550984802noreply@blogger.com0