My Disease Progression

Washington DC

I’ve noticed some symptoms getting worse; it’s not much worse but still I notice it.

Some symptoms don’t bother me much.  Several days ago I was looking for two specific files in a list.  I knew what was in each file, but I couldn’t remember or even guess the file names.  All my file names have some relationship to the subject of the file, however, so that I knew that if I checked through the long list of files, I’d find it eventually.  Since there were two different files I was looking for, I decided to look for both at the same time.  But I couldn’t.  I couldn’t keep in my mind the subject of both files while at the same time looking through a list in which I had to match a name to the subject.  I had to keep three things in my mind and I could only manage two.  I went through the list one at a time, however, and had no trouble.

Other symptoms are more unusual.  I was wearing a very light nylon backpack as well as my usual belt pack when I came home from a long bike ride.  I’d put my keys in my belt pack, but as I stood at the front door with my bike leaning awkwardly up against me, the keys weren’t where I’d put them.  I searched through the four compartments of the beltpack repeatedly.  Repeatedly.  I kept searching—it may have been five full minutes—because they had to be there.  Finally I remembered that I had the nylon backpack on, so I reached back, felt the keys in the backpack and started to take it off to retrieve them.  The next thing I remember was that I was searching through my belt, unaware that I’d already found the keys in the backpack.  Again, I perseverated with the beltpack for what felt like five minutes, then thought (as if it were a new thought) about the possibility that the keys were in the backpack and only then realized that the backpack was slung half-way off one shoulder with the keys in it.  I’d completely forgotten what I was doing halfway through taking the backpack off.

And other symptoms are just strange.  The other day I was in the kitchen and heard a symphony being played outside in the alley.  Boom boxes travel frequently through the alley but I don’t remember any symphonies.  And the music stayed in one place, seemingly outside our window.  I looked out and couldn’t see anyone or any source of music.  I asked Marja, “What’s that music?”  “I don’t know,” she said, “I don’t recognize it.”  “No, I’m asking where it comes from.”

She looked confused so I said, “What’s the source of the music; it seems like it’s coming from the alley.”

With some puzzlement, she said “It’s coming from the radio.”  Of course, it was coming from the radio that has been in the same place for years, that is always tuned to classical music on public radio, and that I had had to lean over to see into the alley.  But I’d not recognized it.  Bizarre.

On the other hand, there are some things I haven’t lost.  I’m noticing again that what I might call “wisdom” has not really declined, at least not that I can notice.  I can still participate meaningfully on the church leadership team, provide mentoring to some other people in the church, offer opinions that friends seem to value.  I just returned from giving a talk about Alzheimer's to a group of social workers, and I doubt that they would had noticed if they hadn’t known my diagnosis.  I’m aware of intellectual, cognitive slipping but not loss of wisdom. 

I’ve always wanted to be a “wise old man” and I was getting there.  After my diagnosis, I grieved the potential loss.  Now, it seems, I can keep the role, at least for a while longer.

It’s a fascinating process.  Intellect gradually disappears but relationship can flower.