There are many senses within the human body. My blog today will only cover six of these. Using these six senses, I will share the effect each of them have on my journey with Lewy Body Dementia (LBD). The experiences of other persons with dementia may be different. They are simply my experiences. I have heard (do not know if it is true) that when someone loses a sense that some other sense might be increased.
Sight is very important to me and most everyone. Allow me to tell you about my friend Brian Oglesbee. Brian is a high school teacher, golf coach and a motivational speaker. He started playing golf when he was five years old. At the age of sixteen, he had completely lost his sight. Brian never gave up. In 2014, he won the American Blind Golf Match Play Tournament. His comment after winning it was "there are three things that went into winning this tournament: God, my brother, and my swing.....with my swing being the smallest part of the equation". Brian has demonstrated that even though he has lost his vision that he can be highly functional, productive and an inspiration to many people. When I was diagnosed with LBD, I had two choices. One was to give up and withdraw, and the other was to fight like a dog. My adrenalin kicked in, and I chose fight rather than fear this horrific disease. This was probably the most significant decision that I made at the time of diagnosis.
I have started having some vision changes. Nothing major, but I know that he will ultimately increase because of my having dementia. According to the world renowned dementia expert, Teepa Snow, vision starts out with approximately a one hundred-eighty degree field. As we age that field decreases and with dementia, it decreases even more. Often, this reduces to bi-ocular vision. Eventually reaching the point of mono-ocular (only seeing through one eye) vision. I remember my Mom not seeing food or water in front of her. Now, I am able to understand why!
Taste is a sense that may change with dementia. My observations have been there are food that I would never eat before; and, now, I enjoy eating . Likewise, there are food I enjoyed that I no longer want to eat.
Touch comes into play with dementia. Things I touch, no longer feel the same way as they used to. For me, neuropathic sensations (decreased feeling) are an issue.
Loud sounds are one of the most difficult things I deal with. If music is too loud, I might grab both sides of my head and scream. It is as if a pinball machine is being played inside my brain. I have used this analogy and explained to my physicians. It is like the neuron in the brain that is attempting to receive the signal, cannot pick it up, and it pings around, until it finds a neuron that can pick it up. I have had two physicians that have told me that this makes sense.
Equilibrium senses. This is another thing that is extremely present in body. Motor dysfunction seen in LBD creates this. It is very easy for me to lose my balance when I get out of a chair. Sometimes, just walking down the hall in the house, I will veer from left to right and bump into both walls. Fortunately, most times when this happens, I do not fall.
Time sensation. I have always monitored time closely. Even when I was very engaged in my work, I monitored the time of day. I was never a clock-watcher.
I was just trying to complete as much as possible within a given time frame. Looking at a clock and determining the current time is not an issue for me at the present. Engaging in projects such as writing my blogs takes a lot of time every day. Often times when I finish, it is has taken two hours on just one blog. This occurs because my thinking process has greatly diminished. My memory is largely in tact; it takes me longer to retrieve it.
Normally we think about all of the changes as being a problem. I choose to not look at it that way. So far, I have been able to establish compensatory methods of accommodating the situation. By doing this, I am able to bask in the glory of my accomplishment and enjoy the scenery at the mountain top.
©2015 Robert Bowles
Robert Bowles, Jr.