Thursday, July 25, 2019

Middle stage

What does the middle stage of Alzheimer’s feel like? Let me be your guide. This past week was a hard one. It started with high hopes. For the fourth time, I was looking forward to participating in the End to Ride Alzheimer’s. By now my friend and riding partner, Matthew Abbate, were embarking for the fourth year in a row. I had reason to expect that things would similar. Each year was different.
Our first year, I was asked to make a short speech on the eve of the Ride. I spoke about my early love for cycling, and cycling through a dangerous May storm in 1979 in the Cascades. But this year, my fourth Ride, was a first. What happened? I am still figuring it out. It appears that there was an important gap in certain spaces, like in the Nixon tapes. The same process was going on in my brain. The ocean was on my left. As long as I still could see the shore, things were normal. What I was looking for was the entrance to the woods. In other years, I felt tranquil. But this day, I was agitated.
In other years, I looked forward to the food stations. We were probably within fifteen minutes of the first food station. But we were too slow. I had to pull over into a parking lot, feeling dizzy.
What else has changed?  This is a big one. Month to month, I have to be careful when I walk around Somerville. This first came to the fore in a big way in spring 2017. At that point, I was still firmly in the early stage of the disease. Overnight, I realized that I must be much more careful in public alone. Back when the Red Sox won the World Series in 2013, I was confident to go to the celebration parade alone. But in the very recent World Series (2018), I concluded that I would be a fool to plunge into the crowds. Another distinction is the decline in small-motor skills. The first time, in 2016, I had no problem pinning my ID. But in recent years, I had to ask for help.

Recently, I was one of four panelists high up in one of Boston’s highest buildings. With scudding clouds passing by, the topic was dementia. Each panelist had some form of dementia. A decade ago, dementia was not much discussed. I’m sure that talking and learning is at an all-time high. To me, this was quite novel. I have been on several panels. But having four panelists with dementia was a wonder and a joy.
And what about the “fog”? That was the topic of a recent book, from a novice writer. For me, fog is not a major concern, at least for now. What did strike me was a visit to my Mom’s care facility north of Seattle in 2013. At that time, I was already showing signs of cognitive decline and worse. Then I saw a man, quite demented.
 He seemed out of Greek mythology. He was half-naked. I could infer that he was quite demented. Later, I could infer that the man was at the final destination. Thus did my first lesson in dementia studies conclude. I pitied him. He must have been very dizzy. But at the time, he also disturbed me.
And these days, I have to be careful when I walk alone. That is my biggest vulnerability these days. So, I make a point to walk only on familiar routes.


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