A Spectrum of Disease

Washington DC

My symptoms rise and fall in no distinguishable pattern.  Some days are good days; some days are worse. At this point in my disease, I have really no reason to complain.  As far as I can tell, I’m still intellectually intact and enjoy good conversations.  Last week I spoke about my Alzheimer’s to a group of people training to be hospice chaplains.  I talked for about twenty minutes, sharing a bit of my previous history, what it’s been like since I noticed symptoms and where I am now.  After that I led a discussion that went well.  Yesterday I read my spiritual autobiography to our small faith community and again led an energetic discussion filled with personal sharing on all sides.  In some ways, then, I feel completely unimpaired.

The constant difficulty at this point is losing things … all the time.  It’s not that they stay lost for very long; they’re usually hiding in plain sight.  At Sunday’s church service, I couldn’t find my backpack; I asked around and nobody had seen it.  I searched around the (small) room for three or four minutes and finally found it in an absolutely obvious place.  It was not, however, a place where I usually leave the pack nor did finding it jog my mind of having put it there.  Shortly thereafter, a friend asked why I didn’t have my glasses on; I hadn’t noticed they were gone.  I nearly panicked, thinking I might have left them before church at a coffee shop.  I was about to run over when I noticed the glasses lying on the table next to which I’d been sitting.  I rarely remove my glasses outside our house and never without a specific reason.  I have no memory of taking them off or even why I might have taken them off. 

These are tiny things.  They happen to everybody.  But they are happening to me many, many times a day.  Several times day, I will roam through the apartment, looking for my jacket, my backpack, my beltpack, or my slippers.  Such little episodes are less frustrating than they might be because I am conscious of my Alzheimer’s and expect things like this to happen.  I’m more curious than anything else.  Having shared my diagnosis with people close to me, I’m not embarrassed when I have to ask them for the third time whether they’ve seen my notebook.

The more frustrating difficulty is the decreasing inability to synthesize bits of information from various sources.  Sometimes it’s quite simple stuff like stories from several computer files (see “Confusion”); other times it’s listening to reports in a meeting and not being able to pull everything together.  Most days it doesn’t come up, but it’s frustrating when it does.  Usually, though, I can just remind myself: “You have Alzheimer’s, David.  What do you expect?"  Usually, I can let it go.

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Monday morning I biked downtown to a reception of the Alzheimer’s Association Advocacy Forum that is meeting here in Washington to lobby for better funding for research.  I attended one of their sessions.  Some of the speakers had Alzheimer’s and some didn’t.  Unless they mentioned their diagnosis, however, I couldn’t tell which was which.  Yet our predominant cultural image of Alzheimer’s is the old woman babbling in the corner or the man lying almost comatose in the nursing home bed. 

In fact, those of us with Alzheimer’s range across a wide spectrum of symptoms.  There are a lot of us out here with early-stage disease who are still actively living our lives.  Unless I die earlier from something else, I will live for many years with this disease.  Right now, I have memory loss that seems significant to me, but you wouldn’t notice it unless I mentioned it or you were paying strict attention.  I still teach and engage in deep conversation.  Later, I expect I’ll have more significant memory loss but will still be able function meaningfully in my family and community.  Still later on, I may be quite disoriented yet still live with and contribute positively to those around me.  And later I will move toward those disturbing cultural images that bother us.  (Even then, I’ve been told by caregivers, I may be able to have real relationships with those who care for me.)

The general public would be a lot less scared of this disease if more of us with mild impairment “outed” ourselves as having Alzheimer’s and talked openly about it.