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Ch. 11 . What Comes Next? The Lewy Body Sequencing Problem

When I was young, I had difficulty learning how to tie shoelaces. Years later someone told me it takes 32 separate physical actions to tie those laces. No wonder it took so long to learn. In retrospect I can’t imagine how any kid could master such a long sequence.

            Think of all the sequences we face in the course of a day. How many actions must be accomplished in exactly the correct order in order to take a shower? Brush your teeth? Toast and butter your bread? Identify and then use the remote that controls the television vs. the speaker system vs. the blue ray machine? Start your car and put it into drive. Adjust the windshield wipers? Play catch with the dog? Make lasagna for dinner? Sort and put away the laundry? Use an axe to chop wood? Pay your bills and balance the checkbook? Take a walk and find your way home? Write up a summary report on a meeting that ended an hour before? Write this sequence on sequencing?

             Everything mentioned above and much, much more requires a specific ability called sequencing. Human brains seem to have an innate ability to create sequences, sometimes of amazing complexity. Yesterday, for instance, I watched and listened to a concert pianist play an entire symphony from memory. Who knows how many thousands of notes this man played in their exact order?

            It’s difficult to learn new sequences. But once a sequence has been practiced and repeated frequently it is relegated to areas of the brain that require less conscious awareness. There it is labelled “automatic” knowledge (or, more simply, a habit). That allows our conscious brain to attend to newer concerns, including learning even more behavioral sequences.

            Lewy Body plays havoc with sequencing. First, it makes new learning far more difficult.  Pat, for example, had difficulty learning how to turn on and aim a new camera she received as a gift. But most older men and women struggle learning new things such as how to utilize the Internet.  Learning new sequences becomes harder for everybody as we age so we could argue that Lewy Body simply accelerates an ongoing trend. That’s not what bothers me the most about Lewy Body dementia.

            The real problem is that Lewy Body attacks the older, supposedly automatic sequences that undergird our life routines. It’s as if Lewy Body were a pair of scissors snipping away at all the neuronal connections in the brain, separating long chains of information into unusable bits and pieces. But, just to add a new layer of confusion to our lives, there is also the issue of fluctuation. Here’s an example: sometimes Pat can make us a lunch of grilled cheese sandwiches and canned fruit. She completes the entire sequence (including cutting the cheese, plugging in the grill, placing the cheese on the bread, placing the sandwiches in the grill, closing the grill… -- as you can see, even a simple meal is far from simple). At other times she is stymied, most often at the very beginning (“I can’t remember how to do this”) or less frequently somewhere in the sequence. That, of course, leads to confusion, frustration, and sometimes to poor decisions.     I think sometimes people regard individuals with Lewy Body dementia as being “impulsive” in their actions when I suspect that they have simply lost track of the correct sequence in a behavioral chain, begin to panic, and try the first solution that comes to mind. It’s important to realize at these times they are problem solving in difficult circumstances. These situations call for love and acceptance, not dismay and shaming.

            Sometimes writing down the correct sequence of behaviors helps. Not always, though. For instance, I tried writing out the exact maneuvers to reach our television’s stored programs. But that meant Pat now had to add yet more steps to the sequence, namely finding and reading the instructions. She eventually learned the sequence on her own. She usually remembers it too, so long as she uses it regularly and isn’t too stressed.

            As a caregiver I try to remember that Pat may have trouble with patterns and sequences she “should” know by heart. That’s Lewy Body taking the scissors to her memories and sometimes gluing them back together.


Pat’s comments on sequencing:

          If I cannot remember an activity in its usual sequence, I may find a better sequence. Why not?

            What happens when I can’t remember a sequence? I yell “Ron, come help me” or I yell “Ron” in my mind if he’s not here. Sometimes I remember what he would have said or I say “Now, Pat, how would Ron do this?” Or I ask someone else.