This past Saturday, I gave Lewy Body Disease (LBD) and especially dementia with Lewy bodies (DLB) a new alias. For the new alias I chose ASTOUNDING because of the events that took place in my body. Previously I have referred to DLB as a disease of many faces, peaks and valleys and the highest and lowest roller coaster anyone can ride. While I continue to do well on my neuropsychological testing, my physical symptoms continue to erode.
Friday night yielded very little sleep. I sleep in a recliner in the den because of my elevated blood pressure (supine hypertension) when I lie down. On this night, I woke up about every hour. My wife was sleeping in a bedroom close by but I would not wake her up. She needs her rest because she has Lupus and Rheumatoid Arthritis. During the night my gait was mildly altered as I would walk to the bathroom. Through all of this time my cognition was good. I had no feeling of being in a fog. Really, the gait and balance issues were no worse than they usually are during the night when I go to the bathroom multiple times. Exhausted but not able to sleep, I decided to get dressed.
About 2 hours later, Judy and I went to the grocery store. Enter Lewy!!!
As I walked into the grocery store, I immediately grabbed the first buggy that I could find. As I held onto the buggy and followed Judy, I began taking baby steps without being able to lift my feet off the ground. It was as if my feet were glued to the floor. My mind was clear throughout the entire time. As I continued to shuffle and struggle to keep up with her, I thought of a possible explanation as to what was taking place. It was as if the neuron(s) that were responsible for me walking were not functioning. No matter how hard I tried to pick up my feet, I was not able to do it.
The question entered my mind, "How can this be?" "How can the pendulum swing so far?" "How can my mind be clear and I can barely walk?" Every person with DLB has a different journey. When one of my symptoms of DLB increase, usually many of my symptoms increase. This experience was totally different.
Ten hours later, I got up out of my recliner and started walking to the back of the house where Judy was quilting. As I started walking, I immediately noticed that I was once again swinging my arms, picking up my feet and having a near normal gait. Still the unanswered question is, "How can this be?" "How can my mind be clear, but my ability to walk change so quickly?"
Be LBD Strong!
©2015 Robert Bowles
Robert Bowles, Jr.