I met
Mike Belleville in my first support group for people in the early-stage of
early-onset Alzheimer’s in the fall of 2015, a few months after my diagnosis.
This was at a time when I was still early in the learning curve of Alzheimer’s.
But within a couple of months, I learned that Mike didn’t have Alzheimer’s
after all. Instead, his diagnosis was Lewy bodies disease, a much-less common
diagnosis, and one in which the symptoms can manifest themselves in wide number
of ways.
But to hear Mike speak, you would never guess that he had
anything wrong with his brain at all. The former Verizon senior technician still
speaks extremely fluently and calmly. This talent was made manifest during last
year’s national Alzheimer’s Association in Washington, during which Mike was
invited, on very short notice—a matter of minutes—to be interviewed in front of
a huge crowd at the convention center, courtesy of the jumbotron. But Mike
seemed as relaxed as if he were back home in his den in Douglas, Massachusetts,
in his Lazy Boy recliner.
As a senior Verizon technician, where he worked for
nineteen and one-half-years, he had a deep well of knowledge of the complicated
field of public-sector telecommunications. But that was before things started
going south. It got so bad that the people Mike had trained had to explain his
task to Mike himself. Later, in an interview in Men’s Health magazine article, Mike noted that after a marital spat
with his wife, Cheryl, he recollected none of the events the night before.
What I learned most from Mike about Lewy bodies is that
conventional Alzheimer’s disease brings fewer surprises than Lewy bodies disease
does. That’s not to say that Alzheimer’s is a one-fit-all disease. On the
contrary, no two persons with Alzheimer’s have the same set of symptoms. But it
seems clear that Lewy bodies is a good deal more unpredictable in its
manifestations. (One blogger with the disorder christened his blog “The Lewy
Body Roller Coaster.”)
As Mike explained, there are three or four different
disorders connected with Lewy bodies. Symptoms of Parkinson’s (not the disease
itself) is perhaps the best known sub-category of the group. According to Mike, sleep disorders are common
with Lewy bodies. And with Ramsey disorder, another illness in this category,
“You get a message to your brain. And what is happening is that I’m not getting
that signal.” Mike made clear that the disorder is far more than just sleep
apnea. “Normal people go into REM sleep. I’ve ended up on the floor and knocked
over a lamp. I’ve walked into a wall. It’s not a fun thing, obviously.”
Early in our conversation, I asked Mike if he
would have preferred to have his original diagnosis, early-0nset Alzheimer’s.
At first Mike was circumspect on the topic, but the more he filled me in the
details of his symptoms of Lewy bodies, the more I felt that Lewy bodies was the
more challenging diagnosis. And there is one caveat that Mike must follow under
any condition: be prescribed an antipsychotic drug. The consequences would be
dire. And, after our phone interview, I came away with renewed admiration for
my cohort and friend, for his cheerful stoicism in the face of a disease no one
wants.