I have written a few times about the comments folks make when I tell them I have LBD. People make judgements based on how they THINK I should act or appear. I never understood that, until now.
As I was going to sleep for my afternoon nap, it came to me how good I have had it! Because of Dr. Mary Bowles' fast action in getting me on Namenda and Arecept, my experience with LBD has been gentle and slow, until now. You know that I have reported the speed and course change of my LBD.
In the past, I probably did look "perfectly normal"! As I have said many times before, I was not drooling on my shirt and peeing in my pants. And since those characteristics are what people expect from a dementia patient, I can now see their point.
Another point is, because of the "Show Time" response for most LBD patients, I almost always tried to look as "normal" as I could. That probably masked my disease from others.
I also realized I no longer feel comfortable with people outside of Azalea Trace! I do not like being on the roads, interacting with people I do not know or do not share something in common with. Nor do not like crowds. I feel safer, within the confines of my retirement community. I have commented on feeling so secure and comfortable in one of the "Memory Care" facilities we looked at drink our search for a community. That facility still seems the most acceptable for me.
I would much rather be with other dementia patients, in a facility that offers every necessary service. That being said, I am doing well here and would not move.
I now know fully, what LBD is like and so does my wife. I am sure that others who interact with me on more than a cursory level, see this also. If not, they are either not looking or don't care. But, they should understand, neither do I.
So, that is the latest update. Painful to some, but all truth and reality.