Hi Everyone! my posts are few and far between. I guess when diagnosis was first made I was obsessed with what was happening with Bob, I was on here quite a bit. But life goes on and there gets to be an acceptance. It has been over 3 years now, that a proper diagnosis of PSP was made. It will be 2 years in February that he has been in a care facility, and a darn good one. Will be 3 years in March that he had feeding tube placed, with no regrets. He still has pureed foods as well, and he drinks juice boxes. He got a power chair in the summer, that has been a God send, he was not able to move himself around in his other wheelchair, so was mostly bed bound. The physio therapist still gets him up with his walker, to keep those muscles working, but it is a big challenge. Thank goodness for technology, if it weren't for the iPad and cell phone, no one would know he was of sound mind. Those (and thumbs up and down) are his only means of communicating, although the typing is painfully slow, he can communicate. I was feeling downhearted, waiting for him to ask to come home for Christmas, I guess he knows that isn't possible anymore, he didn't ask. So instead of that, I booked a room that is available for family functions at the continuing care. We brought in Chinese food Christmas Eve, all the kids and grand kids were there, 13 of us all together. I brought my "Magic Bullet" and pureed some food for Bob. He didn't eat much, but got to taste some anyway. I hope everyone else that celebrates theses holidays has had as good a time with there loved ones as we had.
Best to you all!
Joan
The story of PSP and Tom
THEY WON'T LET HIM COME HOME
Is it time for nursing home care?
