When, in conversation with another person about my Alzheimer's, I mention one of my particularly frustrating symptoms, they'll often respond with something like, "Yeah, I know what you mean; I've been getting a lot more forgetful, too."
It drives me nuts.
Usually, I just let the comment pass, but it most often feels like a dismissal of my diagnosis, as if to say, "Everybody gets like that sometimes; don't take it so seriously."
It irritates me, so I list a few of my more abnormal symptoms to shut the person up.
But sometimes they'll respond to that by saying something like, "Well, you said you're not 100 percent sure you have Alzheimer's, didn't you? It could be something else, right?"
Yes, it could be something else.
But it's not.
I can't blame my friends; they're just trying to be optimistic or make me feel better or, perhaps, shield themselves from the fear of the disease. Or maybe they're just trying to make sense of the disease, to understand what I'm going through and I'm just being overly sensitive.
As I've written before, a definitive diagnosis of Alzheimer's disease can only be made at autopsy. In clinical practice, however, the diagnosis is made by testing for dementia using a cognitive function test and then ruling out other causes of that dementia. For some of us with early disease, however, we don't even meet the official criteria for dementia, which, in practice, usually means a score of less than twenty-five out of thirty questions on the Montreal Cognitive Assessment (MoCA). Those of us who score between twenty-five and thirty are given the diagnosis of "mild cognitive impairment" (MCI). If the other causes of dementia have been ruled out, however, MCI virtually always progresses to Alzheimer's.
So do I always feel absolutely certain?
Well, mostly I do.
My personal neurologist believes my MCI will progress to dementia, as does the research neurologist I've asked. At an intellectual level, I'm convinced this is Alzheimer's disease.
But am I absolutely, 100 percent certain?
No. And that little bit of uncertainty makes this difficult disease even more difficult.
As a doctor, I understand that in medicine almost nothing is certain. Sometimes we just have to wait and see. But, even so, the three years since my first symptoms feels like a long period to wait.
Most neurologists, I suspect, don't mention Alzheimer's to people with early MCI unless they ask. At my first visit almost two years ago, my neurologist told me about my score of twenty-seven but—perhaps noting that I hadn't asked—didn't specifically mention Alzheimer's. That I—a guy who always wants the details—didn't ask specific questions after missing three questions on the MoCA surprises me.
Perhaps it indicates my own fear of the disease at that time.
I have a lot of confidence in my neurologist, and, when I asked about Alzheimer's at my visit this past September, he was candid saying that he thought my MCI would progress to Alzheimer's.
There's really no way around this dilemma of uncertainty, but it raises uncomfortable issues for those of us with mild cognitive impairment. We ask ourselves questions like:
- What's really going on?
- If it's not Alzheimer's, what else is it?
- If I'm not 100 percent sure, do I inform my friends, anyway (much less go public with a blog and newspaper interviews)?
- Do I go into all the details of MCI versus Alzheimer's every time someone questions my diagnosis?
- Do I take the major steps to reorganize my finances?
- If my job requires a high level of cognitive ability, do I quit now or wait to make a serious mistake or have my boss fire me?
- Should I apply for disability?
- Should I get started on my "bucket list"?
- What kind of advance directives should I make?
- Obviously, some people would rather not know and deliberately avoid the diagnosis.
- Others move into active denial, perhaps never facing their reality.
- But for those of us who want to know what's happening to us, why we're forgetting so much, why we've declined intellectually, the uncertainty can wear us down.
- I'd be interested whether others with who are in the early stages of Alzheimer's find this limbo nerve-wracking.