Happy 4th, and what a beautiful day it is. We had a great weekend, several picnics, and Bernie & I hosting one this past Saturday. I am trying to do more and take Bernie more places lately because I don’t want to look back and say I should have. As I watch him through his progression I can see that things are getting more difficult for him so while he is still able I want to keep him going. He does tire more easily so we are usually the first to leave any function we go to, but always happy that we went. Bernie seems to stay by himself more and more whereas in the past he was the life of the party and I always had to drag him home. He is having a difficult time with his voice and can barely be heard, his speaking and swallowing have been an issue from the onset , but have really progressed these last 6 months. The last few days he has complained of body soreness, says that his whole body hurts…arms, legs and even his stomach, says he feels like he did a hundred setups when in fact he has done none. Not sure what that’s about but I will keep an eye on it and see what a couple of days brings. When he was first diagnosed he had a lot of body stiffness and soreness, it either didn’t bother him too much lately or he figured it was par for the course but hadn’t complained in a while and now it’s back. I had him soak in the hot tub this morning and he seemed to think that helped.
I have noticed some real big changes in him lately and am getting worried. When reading on this Parkinsonism they say 10 years from onset to death, from walking to walker to bed ridden so as we approach the end of our sixth year of this I am frightened of what is to come. I will take it a day at a time but still the prospect of a more dramatic change in him seems daunting.