2/10/14 - checking in

This is the most frustrating illness…there are days when you are thinking the road is straight everything is manageable and then Bang another day you look at him and think wow look how bad he looks! You start to worry, tell close family he’s progressing and getting worse mention you’re concerned, he looks tired, weak, his eyes are unblinking and unable to move in any direction. They come by in a day or two for a visit and he doesn’t look so bad and his eyes don’t seem to be staring in that one direction, he can’t move them much but he looks okay and they think you’re nuts or making more out of it may be looking for attention..I don’t know but it’s hard to know what to do. The incontinence issue has me baffled, sometimes he will have accidents few nights in a row other times he wakes up at night to go and stays dry and the cycle continues like that. One would think that once you start to have inconvenience it will get worse and you would continue to have the issue. I use depends and many nights they are dry and he won’t want to wear them so I don’t insist and then the bed is wet…….. How do you know what to do? This illness affects the entire immediate family, those living with the person with PSP. Although it certainly affects the person will the illness more, and I would never suggest anything other than that it still touches all of us.