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When my seventy-something father's memory began to falter, his neurologist suggested a battery of neuropsychological tests, an MRI, and possibly a PET scan. My father, who couldn't remember how to get to the doctor's office, or what he had eaten for breakfast, told the doctor "no way. If I've got Alzheimer's, I've got Alzheimer's, and there's nothing you can do about it except take my money." That, at least, was the gist of his refusal. He probably wasn't that polite.
When I decided to put myself through those tests--and more--while researching my book, "Can't Remember What I Forgot," I often heard from friends (and strangers) that I was nuts. Most were not concerned (as I was not), with the radioactive dyes that would be finding their way into my brain and body. Rather, they thought I was nuts for wanting to know what was going on "up there." They were all in favor of ignorance--or, as the professionals would say, "protective ignorance." Why invite unhappiness, they'd say. What they meant was not: what you don't know can't hurt you, but, rather, what you do know, can.
I saw their point, but did it anyway. And what I found out did not hurt me, and in fact made me regret, deeply, that my family had not insisted my father take the tests, too. Maybe not the MRI. Maybe not the scan. But the neuropsych, definitely.
The tests take about five or six hours. They look at all sorts of mental function, like logical thinking and spatial reasoning, as well as various aspects of memory--visual, verbal, short-term, longer term. I was most anxious about what they'd be like--no one would say--and what they'd reveal, in the days leading up to the morning I reported to a small room at NYU's Tisch Hospital. I was fairly anxious then, too, but sitting in that room, opposite the tester, my anxiety was tempered by a feeling of resignation. It wasn't as if the tests were going to show something that wasn't already there. It wasn't as though they'd make me sick. Weirdly, somewhere in the third hour, I became more curious than scared. Just by taking the tests I was getting a pretty good idea of my strengths and weaknesses and a pretty good multi-dimensional picture of my brain at work. It did work! This calmed me down.
That is one reason, if you feel that you're experiencing memory loss, that you might want to get tested: the anxiety of ignorance, which lets you construct all sorts of fatalistic scenarios in your mind, will be vanquished. And if your worst fears are realized--which, by the way, is statistically unlikely--you will be able to focus on what you can do to slow down the disease.
This point was impressed upon me by a man named Jay Smith who wrote me a note not long after my book came out. He was in his late fifties. He had been experiencing memory problems. He got tested, he got scanned, he got diagnosed with AD, and he became...an activist. He now lobbies for more funding for AD research and he's enrolled in a drug trial, and he's living his life as mindfully and purposefully as he can, since he does not know how long his clarity will last. The thing is, none of us do. That's the fallacy of good health.
In his note to me Mr. Smith wrote:
“My own personal experience with getting my diagnosis two years ago led me
to understand that greater awareness of Alzheimer’s earliest symptoms
among doctors and the public will make it easier to get a diagnosis earlier
in the course of the disease. Earlier treatment and intervention in the
early stages of Alzheimer’s could significantly alter the course of
Alzheimer’s disease. Future clinical trials and studies of treatment
therapies on increasing numbers of subjects in the earlier stages of the
disease will provide significant new insights that will accelerate the
development of more effective treatment strategies, as well as influence the
future direction and success of basic research. Ultimately, with or without
treatment breakthroughs, earlier diagnosis coupled with earlier treatment
will surely contribute to reducing the enormous costs of Alzheimer’s –
measured both in terms of dollars and in terms of human suffering.”
It doesn't get clearer than that.
