Stability in instability!

[carolinesimmons]

Just about the time I think my husband has reached some point of stability, he either improves some part of his life or just the opposite. I tell my friend he is incontinent and then he has several days of dry briefs. I say he is getting me up 3 - 5 times a night and then he sleeps through the night.

One night after we went to bed, I couldn't sleep for feeling sorry for my self because of other family concerns. I got up so my crying wouldn't disturb him and went out in the living room to read. I fell soundly asleep and awoke with a start with him yelling loudly for me. He hadn't made any loud sounds in many months and I was amazed by it. He only wanted to fuss about where had I been. He spoke with a nearly normal voice for about 36 hrs. This whole PSP continues to keep me confused.

It's hard to just try and accept everything as it happens - and be grateful for the improvements whenever they come and for however long they last. It must be so much harder for him to deal with!

[Short1]

Hi Caroline, I know exactly how you are feeling. My husband can go for a week without soiling himself but then will do it sometimes twice a day for four days. His noise will keep us all awake for the whole night or three but then he will be quiet when someone is here. If I then complain about his noise I feel like I'm making a mountain out of a molehill. It is a tricky disease and it is never easy to to answer when someone asks how he is. I just say he is slowly getting weaker but ok at the moment. I guess we just have to make sure all of us carers keep getting the strength to continue this important job.

[carolinesimmons in reply to Short1]

I'm glad I'm not the only one! I have a CNA who comes in once a week and she says she definitely sees an overall decline. I guess I'm just too close to it. It is tough. Thanks for the response.

[jimandsharynp]

What you describe is in tune with the variability of PSP. Different in many patients. Inconsistant progression.

Jimbo