Saturday we had a great speaker at our support group, he was an early president of the Wisconsin Parkinson's Association. Great guy has been his wifes caregiver for 40 yea4s since she was diagnosed. Many great points were made but he made a special point of telling the caregivers to make sure the take care of themselves, to which I agree completely. He does now however have 9 people who take care of his wife for him or she would surely be in a nursing home now. If they travel he of course does not travel with her, someone else does that. This brought up a question in me how do we the pwp gwt away? My wife suggested a get away for pwp so that we could talk of other things and do things to get away from our disease. Here is where I see a bit of a rub.
When you are around pwp it is readily apparent that you are with a group of people who have pd. Alarms gong off every little bit to tell us it's time for pills, not to mention everyone moves in slow motion or tremors. She then suggested that we be encouraged not to discuss our disease and speak of other things. My thought was well yes we could all do that while we can't sleep at night or sit there contemplating all the other things we used to be able to do. I know this sounds harsh but there is no place or no time that we can get away from this disease. It has gotten into my dreams, I am restricted in what I can do in my dreams by this. I agree that our loved ones who care for us no matter how simple now or how much later on need to get away from it, but they must realize that we can't do that. Parkinson's weaves its way into every bit of our being. We live by the schedule of pills it requires, by the way we move, by the way we think or don't think anymore, even into that most cherished place of all where we were invincible..... our dreams.
I don't say any of this in anger or being mad at some deity that must have more important things to do than take time off from running a universe to worry about how I'm doing. It is very simply a matter of fact, no matter what I do or where I go this is the dominant force in my life. It has robbed me of the ability to make Love, to swallow, to sleep, even to poop!!!!! I can no more blame a God for this than I can give him credit for the fact that I could do the things I did before. That would be saying everything in my life was set in stone before I was born and then why bother at all. What was all this for? I want to believe that the things I did were because I wanted to do them enough to put in the effort. I certainly don't know the ways of the universe but I would like to think that both the good and the bad I have done were things I did and not a part of some cosmic chess game or even worse some preordained plan conceived long before I was.
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