It was exactly one year ago today that the neurologist told me I had "mild cognitive impairment" (MCI) that would almost certainly progress to Alzheimer’s. Shortly afterward, I got lost a couple of times while biking, made several major mistakes in the bookkeeping I was responsible for, and noticed increasing difficulty in keeping more than one or two things in my head at the same time. It was bad news, but it all seemed consistent and pretty straightforward.
But then in late spring and early summer, I had a series of brain scans looking for physical evidence of Alzheimer’s, and they were completely normal. 2½ weeks ago, I had an extensive neuropsychological examination of which I'm awaiting results. During the examination, it seemed to me, my memory wasn’t as bad as it had been. For the last couple of months, it has seemed to me that I've been somewhat sharper than before.
Last year's clarity about what I have and where I'm heading has become murkier.
It may not be mysterious at all. Perhaps I've gotten so used to the memory impairment that I don't remember anymore what it was like to have a normal memory. Alzheimer's is a disease that is better some days and worse others; perhaps I'm just in one of the better phases. Perhaps I'm one of those people whose disease progresses very slowly (as people with Alzheimer’s but normal brain scans tend to be).
Or could I be even getting better. The negative brain scans have opened up the possibility that my symptoms have been due to something other than Alzheimer’s. The problem is I don't know for sure, and I don't like the uncertainty.
Is it possible that I'm actually improving and could return to normal? I've been doing some reading about mild cognitive impairment (MCI), but it hasn’t clarified an answer to that question. As I mentioned in the last post, there are a number of treatable, even curable causes of dementia: thyroid disease, alcoholism, vitamin deficiencies, depression, and medication side-effects. So if I had MCI from one of those, it would be possible to improve. A thorough medical examination can diagnose any of those diseases, however, and I've had a very thorough medical exam which was normal for all of them.
If my MCI were due to little strokes (vascular dementia), then if the strokes stopped, my MCI could remain stable, too. But the brain scans I've had (the CT scan and the MRI) should have picked up little strokes, and they were normal.
So are there other forms of MCI that might remain stable or even get better? The Alzheimer’s Association’s recent report, 2013 Alzheimer’s Disease Facts and Figures, states that some people with MCI don’t seem to progress onto dementia and even improve, but research scientists don’t really know why. And, apparently, if your MCI is, like mine, an impairment mostly of memory, then it's unlikely to improve.
All of that leaves me feeling just a bit confused. I'd like to have a long discussion with one of the neurologists, but they, understandably, want to wait for the results of the neuropsych exam.
So I wait and try to learn about uncertainty.