Several things seem important.
The first is that the time from diagnosis to death is, on average about nine years. This chart, however, begins when the score on the Mini-Mental State Examination is twenty-five. My score is still twenty-seven (although my neurologist seems pretty convinced of the diagnosis, anyway), which means that I’m still not on the chart yet, so the course of my disease is likely to be longer than the average nine years.
The second thing to notice is the steepness of the curve in the middle of the disease. I’m still in the upper left flat part of the curve, but the graph shows a precipitous drop in functioning after diagnosis. From formal diagnosis of dementia (a score of twenty-five) to nursing home placement is only two years. Third, of course is the flatness of the curve after nursing home placement, about four years. These are all average figures, of course, but still they give some indication of what’s in store. I’m just wondering how long real consciousness of self, being in touch with reality, lingers.
Marja seems, increasingly, to accept the diagnosis, although she expresses some surprise that it has not highly affected her emotionally. (I suspect that will change considerably once symptoms become more obvious and she begins to lose “me.”) I, too, seem to take it with a bit too much equanimity, probably because with the mildness of symptoms, it doesn’t yet feel very real. It’s true that there are those gut-wrenching moments when I begin to realize the vastness of what’s coming, but those are uncommon … and none in the past ten days or so.