Guest Post By David Hilfiker
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:
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.
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.
- 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.)
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.
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