My intent
this week was to write about insomnia, a subject I was intimate with in my
twenties. My plan was to reflect on those nights, decades ago, when I would
toss and turn in bed sometimes until dawn, waiting for my mind to wind down.
The topic is of interest to me because, since I was diagnosed with Alzheimer’s
in June, I’ve been wondering to what extent the disease is affecting my sleep.
Rather than struggling to fall asleep at night, I find myself waking up earlier
– sometimes much earlier – than I wish.
But that’s a topic for some other unwelcome dawn. Around 2
a.m. this past Tuesday, a couple of hours after I went to sleep, I woke up in a
sweat. The disruption was forceful enough that falling back to sleep anytime soon
seemed remote. Instead, I went downstairs to my dining room, where I located a
notepad and began drafting this blogpost. This was not the first time that
medication for Alzheimer’s has disrupted my peace. One of the first times I took
a dose of Donepezil (better known by the brand name Aricept), I dreamt about
Aaron Hernandez, the former New England Patriots star now serving a life sentence
for murder. He was chasing me with what I believe was an axe.
That nightmare prompted me to read more carefully the
seemingly endless menu of Donepezil’s potential side effects, ranging from
nausea and vomiting to hallucinations. I suppose that I should count myself
lucky in that the only effect I am experiencing regularly is some modest pain
centered in my lowest vertabra, a consequence of an arthritic condition that
dates back to my late thirties.
But I am still in the process of fully understanding
Alzheimer’s as a disease. My earliest symptom appeared three years ago, after
my wife and I dropped off our son at college in Washington, D.C. On the long
drive back to Boston I noticed a thought forming in my head that I couldn’t
quite grasp. It was as if I were trying to retrieve information from a hard drive
manufactured in the early nineties. That machine would sometimes emit a
grinding sound when calling forth a file. What I glimpsed was a phantom of a
thought, empty of meaning.
It was another year before I realized that something was
seriously wrong. Until then I could attribute a relatively modest decline in
job performance to nothing more than burn-out after eight years in the same
job. But in the late summer and early fall in 2013, my problems became more
severe. That December my gerontologist (how many people in their early fifties
are assigned to gerontologists?) noted that I was at risk of developing dementia.
The problem facing all of us in the early stage of
early-onset Alzheimer’s is that there is no drug on the market that can
substantially slow the disease’s progress. Pfizer, the maker of Aricept, makes
clear on its website that the drug treats Alzheimer’s symptoms, such as poor
short-term memory, rather than the underlying disease itself. A magic bullet it
is not.
That could change, of course, just as things changed in
the early 1990s for people who were HIV-positive, saving the lives of Magic
Johnson and countless others. Do I think this sea change will come anytime
soon? No.
But there is consolation in knowing that one’s disease
tends to progress fairly slowly. There remains much time for me to observe the
world. As I traverse the streets and walkways of Somerville, my home for most
of the past thirty years, my gaze lingers on a small child squeezing a parent’s
hand, a big dog on a leash dragging its owner, petunias blooming in a crack of the
city sidewalk.
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