Not long
after I went public with my news about Alzheimer’s disease in the summer of
2015, I was contacted via Facebook by Steve DeWitt, whom I played high school football
with in the late seventies. I didn’t know Steve well—he was a year ahead of me
among a student body of well over 1,000 students. But that we both ended up
with Alzheimer’s in our early fifties seemed more than just a coincidence. Neither
Steve nor I were aware of any family members who developed the disease at such
a young age. This made each of us suspect that head trauma, perhaps caused by playing
tackle football for many years when concussions weren’t as well understood as
they are now. Several weeks later I posted a piece in which I surmised that my
genes had nothing to with my dementia, but head trauma did.
This week I once again interviewed Steve, this time to
exchange notes about the disease we share. Both of us reported a decline in our
spelling skills, which should be no great surprise. Spelling draws on
short-term memory, and short-term memory is the first function that the disease
attacks. And English, unlike German, the only other language I am familiar
with, is somewhat of a mishmash, with many French-derived words that are tricky
to spell.
Steve appears to be a bit farther down the long road of
Alzheimer’s than I, which may be attributed to his having developed the disease
a year or two before I did. One thing that surprised me was Steve’s description
of “phantoms.” At first I thought he was referring to brief hallucinations,
which, I have been told, can be a common symptom in the disease’s middle
stage. But Steve’s explanation is more complex.
Phantom pain, according to Steve, “feels like a red-hot
needle going through me, though they last just a few seconds. They seem to
happen in targeted areas, but the areas change over time. Previously, I felt
them in my leg or foot. Right now they keep attacking my left eyeball.
Sometimes I get no phantom pains, some days I get a handful of then.”
Before Steve started experiencing the symptoms of Alzheimer’s,
he was an acclaimed home builder, with one of the home’s being featured in Architectural Digest. For Steve, as for
many other people who were respected professionals before they developed
Alzheimer’s, it took some time for Steve to recognize that he could no longer
do his job. But he still works in his wood shop in his home. He did have a
minor accident recently, but in Steve’s calculus, continuing with his craft of
carpentry is worth it. It reminds him that in at least one realm, he is still
quite able.
For many years, Steve and his wife Patricia have been
empty-nesters, and Patricia works as a bookkeeper in a law firm in San
Francisco. Patricia gets up around 6 a.m. on workdays, and at that early hour the couple shares conversation and coffee before Patricia leaves for work. Nearby is
a young family, and some days, Steve plays wiffle ball or other games with the
kids. Steve and Patricia have two small dogs, to the delight of the neighbors. And in Northern California’s temperate climate, such games can be
played year round. Steve, like me, is an
avid reader, but recently Steve has found reading more challenging. Sooner or
later, that will be the case with me as well. Like many people with
Alzheimer’s, Steve attends a support group, which he describes as helpful. But until recently, he had something a good deal better: An excellent relationship with his
neurologist , Dr. Keith Vossel, at the University of California at San Francisco.
But Vossel has since moved on. I myself interviewed Dr. Vossel last year, and I
can see why Steve would miss this particular doctor. He has the rare skill of
conveying matters of the brain in an accessible fashion, without a trace of
condescension.
The last question I asked Steve was this: “Do you ever
feel depressed about having Alzheimer’s, rather than just wishing you didn’t
have the disease?” This was his response: “I decided I didn’t want to let
Alzheimer’s get me down anymore than it has. I refuse to let it. I refuse
Alzheimer’s to beat me, even though I know Alzheimer’s will win this fight. But
I will fight to the end.”
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