PSP Association
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Stability in instability!

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!

3 Replies

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.


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.


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



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