Hi everyone, especially GeorgePa! Beautiful poem George, so painfully true.
One thing I would like to share with everyone, is the result of S's recent Neuropsychological assessment.
He had this done back in June, a four hour assessment, we had the results last week! It was fascinating, never been into physchology before. It amazing what they can determine. Some how they could measure his intellectual ability, before PSP and what it is now. Being a clever clogs, he scored 97th Percentile (I didn't know what that meant either!!!). Mere mortals like me, would probably score between 40/60%. It's worked out on a bell graph of averages! His intellect has gone down, but not by much. Apparently, your intelligence is the last thing you lose. His executive function has crashed, but that's in keeping with PSP.
The main thing I wanted to express. OK, I know this is only S's results. They checked his anxiety levels and considering his condition they were only very mild. This is our main worry, that our loved ones are locked away in this awful world, where they can't communicate, feeling very frustrated and in distress. With S, this is not the case! He does suffer with huge apathy, which must be taking care of his inner feelings as well as the ones he can show, or not, as is the case!!!
Not everyone will be like this, but I suspect the majority of our loved ones are the same. They really aren't suffering in the way we all worry and suspect! The other day, when he could talk, I asked what it was like, locked in, not being able to communicate, the question was too hard for him to answer, but what I could determine, that he was not at all concerned, when he couldn't talk. It just seemed normal, if that makes any sense! He certainly wasn't in a rush to tell me anything, or complain!!!
The assessor, explained to S, that this was because, I was providing a safe and secure place and he knew he was loved and cared for.
So my conclusion, we are right in what we do, our love is getting through, our hard work is worthwhile and most importantly, S is not suffering deep down inside. PSP is obviously doing one decent thing for our loved ones!!!! I know for lots of you, this may sound completely wrong, I am sorry if I have upset anybody. But if I have given one of you a bit of comfort, like this report as given me, then thats what this site is about!!!
Lots of love