My Cognitive Impairment Doesn’t Need a Name to Be Real


I notice that I'm allowing the uncertainty of my diagnosis to inhibit my blogging.

As I said in my last post, the uncertainty is not that difficult for me personally; my symptoms are no less real to me than before. I do realize, however, that, for many other people, the lack of objective evidence of cognitive impairment renders the value of this entire endeavor questionable.

Whatever my subjective experience, if there's no medical evidence of Alzheimer's (or, worse, no evidence of cognitive impairment at all), then, for many others, this blog might be an interesting study in psychosomatic illness but of little interest to those who are concerned about the inner experience of Alzheimer's. For those particular people, my writing about my symptoms may seem an almost pathetic, last-ditch attempt to convince myself and my readers of the reality of these symptoms.

All of which makes me a bit defensive while writing this blog. Nevertheless, this blog is about my experience of whatever-I-have, so that's what you'll get. Of course, the doubt of others and my defensive reaction to it are all part of the process, anyway. I just wanted you to know what's going on internally as I try to sort out this new phase.

Anyone with early Alzheimer's, I suspect, has such doubts. As I've worked with my uncertainty during the past few months, it's been helpful to categorize my symptoms into two rough and overlapping groups.

First, there are the "Well-that-could-happen-to-anyone" complaints, such as loss of memory, difficulty in word finding, deterioration of my ability to type, and so on. Everyone has experiences like these and they increase as one ages. They're poor evidence of disease.

Then there are the "Now-that's-real-impairment" symptoms: getting lost in a place I knew fairly well, the severe loss of ability to work with spreadsheets, the episode with the keys and others. These are not easily dismissible.

Over the course of the last three years, I've had a number of the latter "Now-that's-real-impairment" symptoms. They occur only infrequently—the last was at the beginning of August—but they've been important in helping me and others to accept my diagnosis.

There are also two things about the "Well, that-could-happen-to-anyone" symptoms that remove my doubt. First, their frequency has been staggering:

  • I now search around the house multiple times a day every day to find things I've just put down. Not only have lost my beltpack three times over the past couple of years, but I would also have lost it several more times if someone else hadn't noticed and pointed it out to me.
  • Anyone can have trouble word-finding, but I am daily having to use less-than-satisfactory substitutes for the word I want.

Second, these symptoms may be normal for some people, but they are decidedly not normal for me:

  • It wasn't until yesterday when I reread last week's post on the difference between Alzheimer's and normal aging that I recognized I'd written about the same thing at least twice before.
  • I've been forgetting some of the "shortcut keys" that I've used in my word processing program almost every day for over ten years. Only later do they come back to me. (My wife Marja is unimpressed: "I can't remember any of those shortcuts at all," she says.)

Maybe some other people have trouble with such things, but I never did before.

Because I've been aware, however, of how my normal tests this might seem to some others, I've become almost embarrassed to be writing these posts.

But then I remember the purpose of this blog: to describe my own experience of cognitive impairment, whether or not it's convincing to others. I'm to write down the truth of my experience, and it's up to others to decide whether it's helpful for them or not. My truth at this point includes my defensiveness and my reluctance to write about my symptoms.

If this turns out to be a chronicle of a "worried well," so be it.

Editor's note: David's journey with Mild Cognitive Impairment was chronicled in "Fade to Blank: Life Inside Alzheimer's" an in-depth look at the real lives of families impacted by the Alzheimer's epidemic. His story continues on his personal blog on

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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You don't need to feel defensive--what's happening to you is obviously real. Your blog is both informative and insightful. My mother has Alzheimers's and of course I worry that I will develop it too. My brother, who had a stroke a few years ago, has experienced cognitive impairment that is very noticeable to his wife and to me also, even though I see him infrequently. He had a whole battery of tests, and like you, they showed no sign of cognitive impairment. I'm amazed at the results and I'm sure his wife is too, as he is clearly impaired sometimes. So I am really interested in hearing your story unfold--keep blogging!
Your issues do not sound psychosomatic in the least. It makes me worried to read it! I could not possibly feel comfortable with this in myself if it was continuing to happen to me with no answers as to the cause, and it is way too much to write off to normal aging. I wish that your doctors including Mayo had not given up trying to figure this out. Obviously your "IQ" is still up there above well above most of ours, and that's great, but your abilities to function normally are taking a hit from something...Would you mind terribly sharing with us what medications or supplements you are already on?
I value your input and am so very appreciative of ALL your effort to share your inner experiences. As I read your comments such as - "so that's what you'll get." or "so be it." ... I want to reach out to you, shake your hand and give you a big - GO DAVID! As I read your reality of the symptoms, I understand better what my mother is living through and you must be told just how much you are helping me and others with your sharing. The "awareness moments" that my mother experiences, touch me the deepest. Some symptoms may be normal for some people - but like you said, "The are decidedly not normal for me". Nor are they for her. I've told her how much I love her, I will have her back and she can trust me to keep her safe. I just had a this conversation with her ....... again, just yesterday. She was frustrated because she was very much "aware" of an episode where she just knew that she should know what to do.....yet she didn't.
I put myself in her place and I think that the most important thing for me would be to know that there was that one person that I could feel secure in knowing that they "had my back". I can't imagine going through such a loss of myself without that trustworthy faithful other. I am grateful to you for sharing this season of your life with us and I do hope that you will continue. This is my first time responding and I know that my reading your blog tonight was meant to be. Thank you David for your honesty and courage. My very best wishes to you. MJD