Saturday, May 15, 2010

Progression continues

My wife and I have recently noticed a marked decrease in my mental abilities. My bad dreams are increasing in intensity and number, interrupting my sleep. My anger and frustration at the world around me has increased. No I have not lashed out at anyone, but I want to. Even my mobility is decreasing and I find myself stumbling more and nearly falling while just standing. I was reminded by my wife tonight that I write this blog to chronicle my progress for my mental well being and for others to see. We have even began to discuss participating in a study to see if what I am going through can't be used to help others. Sort of being a live "Test Dummy" for medicine! I am OK with that. But what I am not OK with is my friends and acquaintances doubting my disease. SO, I will explain what happens when you see me acting normal. I recommend that you go to the Lewy Body Association's WEB site and look at the FORUM sections. There are a couple of good articles describing "Show Time". It seem, at the stage that I am at in my disease, that I can carry on normal or near normal conversations, making you believe that I am completely following what you are saying, and making sensible statements. That period of time of relative normal cognition is called "Show Time". Not my term, but what the medical field calls it. Many times, after we have talked, I will not remember what we talked about, or even if we talked. My personal perspective is that this "Show Time" comes from an inner desire to appear normal. We all have that desire. Remember High School?! Or, why don't non-Christian people swear in church? The answer to that is it is not expected of us, so if we did swear, we would not look normal in our environment. I could write a thesis on this topic just based on walking around a Navy Combat ship with a Chaplain. As you approach, before they see the Chaplain, there is cussing, crude jokes and stories, maybe even some Playboy magazines out. When the men recognized the Chaplain, the cussing and stories stop and the magazines disappear. It did not matter what denomination Chaplain it was. It always happened that way.

I am experiencing this "Show Time", and from my research, most Dementia sufferers, are the same way. In later stages, we don't realize what is normal or expected, and therefore stop trying to meet that unattainable standard of the outside world.

But trust me, I am struggling to maintain what is left of my status quo. My wife drives more, I don't go out at night, I don't want to do much, and I have troubles remembering the simplest things, like what day it is. I spend a lot of my mental time in the past, thinking about my Navy days, early married days, and even my childhood.

I credit my Family Doctor and my Neurologist for recognizing what was happening to me early enough to get me on medications that would maintain my ability to express myself, understand some of what's happening to me, and give me time to slowly slide into the latter stages of this disease. My wife's father had Alzheimer's. His wife covered it up for a long time, and after her death, and the shock of that to his mental ability, we all recognized, way too lat, that he was in trouble. Of course, the medicines that I am taking did not exist when he was alive, so I am blessed and so is my family. At work, the first person to notice what was happening with me was the real brains of the Search Radar Branch, Don Bolick. Since he and I worked so closely together he first caught the little mental mistakes, the lost knowledge, the inability to do my job effectively. I could "Fake it" with others, but not him. We were and still are that close.

I guess the purpose of writing this posting is two fold. To let everyone know what I am really going through and to thank you for caring enough to wish I was really OK. And the fact is, I am in good shape for the shape that I'm in. I will never be better than I am today, and I will get worse before this is over. Everyone needs to understand that and let me deal with this disease on my terms. I don't want to appear mean, ungrateful, or disrespectful. I love each one of you. But I am dealing with a terminal, progressive, disease. That's the fact that we all have to face, together.


  1. I appreciate your output :)
    The experience from your side helps me understand my husband better. I hope it's helping me be a more understanding wife and caregiver.

    You, your wife and I and many others living with Lewy from both sides know the roller coaster ride it is. There are times when I am astonished at how clear thinking and logical my husband can be and at that moment I have that pang of doubt for disease. Maybe it's a pang of wishful thinking because it doesn't take long to snap back to reality.

    I'm sure it has to be very difficult for you to share such a personal part of your life but I appreciate you for doing it.

    I hope you, your wife and family are involved in a support group of some type.
    I have an on line group I CLING to and have learned that blogging helps me keep my thoughts and feelings straightened out and on track.
    It's easy to get scrambled and feel dizzy in the ups and downs of lewy.

    My prayers for all of you.

  2. There are Parkinson support groups not far from your home - I gave your wife the information about one of them on the phone today. I'm sorry you didn't learn of them before. They are advertised in The Beacon, but perhaps you were not looking there...