One of the ear marks of Lewy Body Dementia is the syndrome of, "OK today and terrible tomorrow". Really, one day, I feel OK. Not great, and worse than I did a year ago or so, but still, better than I feel most of the time. Then the next day, I am in a daze, disoriented, overwhelmed with life, people, noise, and I am overcome with the desire to do nothing! The idea of leaving the apartment is more than I can bear. People are caustic to me, and I am mad at the world.
Since I am so dependent on my routine, part of me wishes my disease would stabilize and I would feel the same, or decreasing everyday. I realize that is not the way LBD works, and I really do enjoy the good days. But, I also know, somewhere around the corner, lurks a bad day just waiting for me to be too comfortable with the good days. Ready to pounce on me and make me feel terrible, grouchy, depressed, and confused.
Along with this, my neurologist and I agreed, two weeks ago, to have me stop taking Sinemet. I took this for the Parkinson's symptoms, and it worked. But the medicine makes me nauseous and that problem was increasing. So, we stopped Sinemet and now my legs and arms ache. Not terribly, but noticeably, especially at night. My legs actually feel like thy are drawing up towards my body. I stretch, and that helps. I also depend on my cane more than ever and get tired quickly when walking. I even use the elevator in our apartment building. Before, I used the stairs to get some exercise. But now, most of the time, my legs feel weak and the stairs are a big challenge. I do not want to go back on the Sinemet, so I WILL find ways to deal with these issues. The pain is better than having the "Dry Heaves" every 6 hours.
If you ask me today, how this disease is progressing, I would say, that is is gaining in speed and power. But tomorrow, I may feel like I have the upper hand. Today, I am tired, jumpy, mentally disoriented, and very overwhelmed. Tomorrow, I may want to be with people, have a clear understanding of my surroundings, and not be such a grouch. At least, I hope so.
I don't mean to sound so negative, but I use this blog to keep friends and family informed of my progress. I also use it as a mental outlet for me. Both serve a needed role in my life. Some of my friends and family are out of state. Some folks are reticent to ask how I am doing, because I normally say; "OK" when I really would like to tell them what is really going on. But, I ramble. I will keep you all informed.
Hoping for a better day tomorrow.