On Amtrak Toward Napa CA
We're Not All the SameThe silence and taboo that surround Alzheimer’s prevent our understanding that its symptoms can vary enormously from person-to-person and even from hour-to-hour within the same person. This ignorance can lead to frustration, depression, isolation, and confusion on all sides.
I, for instance, am quite early in the disease. Since my cognitive impairment doesn’t yet interfere with my daily life, I don’t even qualify for the formal diagnosis of Alzheimer’s (although there's virtually no doubt that that's where I'm headed). Sometimes I have no obvious symptoms at all. Most of the time, you probably wouldn’t recognize my impairment. Sometimes, however, I get pretty confused. A few days ago, I came home from an hour’s exercise on my bike. I was wearing my beltpack and a nylon backpack that is so light I can forget it’s there. I had put my keys into my beltpack, but as I stood at the front door, trying clumsily to get my bike inside, I couldn’t find the keys. I searched through the four compartments of the beltpack repeatedly. Repeatedly. I kept going over and over it—it may have been a full five minutes—because they just had to be there. Finally I remembered the backpack. I reached back, felt the keys through the nylon, and only then could I vaguely remember putting them there. I started to take the backpack off. The next thing I knew, I was looking through my beltpack again. Again, I perseverated with the beltpack for what felt like five minutes, then thought (as if it were a new idea) about the backpack, and only then did I realize that it was hanging on my shoulder with the keys in it. I had completely forgotten what I was doing halfway through taking the backpack off and had started looking for the keys from the beginning again. Now, that’s pretty confused.
I’ve had a few other periods of confusion. Three years ago an entire day disappeared from my memory. Last September I got lost riding my bike through a very familiar area and there have been two other similar episodes. When I’m writing or am otherwise at the computer, I have difficulty holding several things in my mind at the same time and can get confused.
But most of the time, I’m not impaired except for my memory. Sometimes even my memory kicks in. Talking with a friend the other day about an event several years ago, I was able to remember the name of the person involved, even though that had been the only time I’d met him. “Your memory is lots better than mine,” said my friend.
Alzheimer’s symptoms also vary greatly from one person to the next. For me, the affliction is primarily in the area of medium term memory loss and loss of the ability to calculate and occasional confusion; it’s not (yet, anyway) in the area of intellect, personal relationships, reading, and so on. For other people with Alzheimer’s, personality changes may dominate: outbursts of rage or paranoia, hypersexuality or accusations of infidelity while they can still function in most other areas of daily living.
Other people have so much trouble with word-finding that they seem almost unable to speak, yet their intellect remains intact and they crave good conversation. For still others it’s getting lost easily.
This variability doesn’t fit into Alzheimer’s public image, which is of advanced disease, so other people’s reactions can be difficult to deal with. I’ll explore some of those reactions in the next post.