Many times, especially in the evening, I tell my wife that I feel like I am not here! I have a feeling of being far off, distant, disconnected, and not engaged. I will stare off into space and see nothing. The television will be on, but I do not hear the program. I am mentally not in the room. It has also happened when I am riding in the car, mostly in the back seat. My wife and son are in the front seat having a discussion, and I am in the back seat, in my own world.
This is a common issue for those of us with LBD, but it is very unnerving for us who actually suffer from this issue. If it were not for the clock with a calendar that sits on the television stand, I would never know the day or date. In my defense, being retired, I have six Saturdays and a Sunday. So the days mean very little. But there are days that we need to be somewhere, like a doctor's appointment! So knowing what day it is, IS important.
Being able to express how these symptoms impact and effect me is a blessing, for my family and I hope for those of you who read my blog. When my wife and my neurologist in Norfolk, Virginia encouraged me to start this blog, they both wanted me to express how I was dealing with this disease. The idea was to get me to look at my disease honestly. It has worked.
In the beginning, I had a "Third party" view of my disease. I used to look at myself as if I was out of my body and looking at someone else. Now, I know it is me and I view my issues as my issues, not someone else's. I know this sounds strange, but it is exactly how I have progressed through this journey. In the stages of Grief, I am now in the acceptance stage. I have LBD, it will not get better, and it will get worse! I never would say that in the beginning. I always thought, deep, down, inside that I could beat this disease. Much like the surgery took my colon tumor away. Well, I now know that is a fantasy and I am in this for life.
So, while I feel disconnected much of the time, I really do know what I am facing. But it is the disease that causes me to be detached from my surroundings. Another issue to deal with.