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.
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.
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.
What else has changed? 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.
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.
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.
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.
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.
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