As some or most of you may know, Lewy isn’t alone in doling out the torture. His good friend Parkinson is with him. When Lewy needs a break, he usually calls Parkinson to fill in for him. It just wouldn’t be like Lewy to leave us alone for a few days. I know, for me, when I hear my joints creek and hurt that I have a better than 50/50 chance of thinking straight. If the Parkinson’s will be with me, kinda like a baby sitter, then Lewy is sleeping off his latest evil massage of my brain.
This can be great because we rest as well. You can’t go far if your steps are only 2 inches at a time. But when you get visitors and you are still in early stages, if there is such a thing, then you get looked at like there is nothing wrong because you can hold an intelligent conversation. Therefore there isn’t anything wrong. I wouldn’t wish 10 minutes of this vile disease on anyone and I pray for a cure and understanding. Going day to day with the full Parkinson’s shakes and aches while knowing that soon Lewy will be back but not knowing if Parkinson will leave is traumatic. My Lewy is creeping back in after just 3 days of Parkinson’s, I used to get a full week, and the Parkinson’s isn’t leaving. The next 3-4 days should be fun. It is really tough to cook when your hands are shaking.
I hope if you are a caregiver that you can understand we don’t and cannot control these things. We would love to remember everything and not be a burden, but that is now beyond our control. We ask for your patience, love and understanding.