Not another ride!

Well, after a weekend where I thought I had lost him, he's baaack. Happy, eating, talking etc. I'm very afraid because as everyone here knows, PSP is mercurial. Is he ready to go soon and is this his last gasp, or is he feeling better only to go backward tomorrow. Help!

Anyway, a respite from crying for 24 hours. Just a few teary eyes. Sometimes I'm even angry. This is not fair, right!!

Thanks everyone for being there for me. Now and in the days to come.



8 Replies

  • Enjoy the moment!!! Happened to me too.


    Jen xxx

  • We are going through very much the same - so every sympathy . Sunday morning V's carers told me to come in quickly as they thought she was going and by lunchtime she was managing a soft boiled egg and jelly and ice cream then the next day nothing .It's emotionally exhausting as we lurch back and forth .I don't know about"one day at a time" it seems more like "one hour at a time "


  • Yes, lurch back and forth with glimmers of normalcy. Then you relax and the upheaval starts again. At this last stage it seems worse somehow, knowing the end is coming and trying to figure out what to do from hour to hour.



  • Hi George and Cuttercat, you are both in my thoughts. Thankfully, Steve did not get on this particular merry-go-round, I can't imagine what you are both going through. Please make sure you are both getting lots of rest. I found snuggling up against Steve, the best way to relax and even sleep.

    Sending extremely large hug and much love

    Lots of love


  • Hi Georgepa, V is certainly not giving in to PSP and I feel for you and your daughter as you journey on this terrible roller coaster.

    Hope you are getting some rest. Take care, Nanny857xx

  • Chris is down at the moment so I hang on to these examples. But I just don't know where I am from day to day - not hour to hour yet !

  • Dear Cuttercat

    It sounds so exhaustin please take rest whenever you can. This seems to be a pattern tbat so many describe. Thank you so much for sharing what must be a very painful experience. These shared experiences help those of us not quite at this stage be aware of some of the twists and turns of this awful disease.

    Sending you love and hugs


  • love you cc!

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