The window opened and shut again

Last week Friday Charles woke up talking, eating, wanted to go for a drive and then to the grocery store. He called both of his brothers and talked with them! He said "I don't understand it either." BUT...............................that lasted a day and a half. We are back to the old "normal." I think it was a gift of respite from God. A day to remember and enjoy the life we had.

This crazy, nutty, wild roller coaster of a disease has taken so much from me (us).

It's indescribable .

But everyone here knows what it's truly like!



20 Replies

  • What a wonderful opportunity! So pleased you were able to make the best of. A little bit like the eye of a storm - normal in the middle - till it starts again!


    Jen xxx xxx

  • Be blessed with that day cherish it.

  • I can hardly imagine your emotion. Does his doctor have any explanation?

  • No explanation but happy I had it.


  • If only that could happen to my hubby and other PSP sufferers it would be a wonderful, even for just a day. So pleased that you have a day to remember. Jx

  • Wow well as with all gifts from God, Thank you Lord, I don't think that B ever got that clear of speech or maybe even of thought. Though I do remember that he could speak better to others than to me....praise God for respites even a day and a half's worth


  • Just enjoy, to have the tiniest scrap of a sentence keeps you bouyed up.

    Julie x

  • What a precious gift. Glad you could enjoy it.

    This PSP tortures us all - -

    love, Jean x

  • Gives hope for the people that will follow in our footsteps, that if they ever do find a cure, patients will get quality of life back, if not a full recovery.

    CC, this must have been wonderful to hear Charles again, Steve only did this once and I can still remember the look on the dog's face, when he heard Steve speak for the first and only time. Put this in those memories to be treasured for ever more.

    Sending big hug and much love

    Lots of love


  • The story of the dog makes me laugh. Yes, it was lovely and heart warming. But now nothing.


  • Oh that must have been wonderful. I'm so glad that you managed to make the most of it!

  • How bizarre, hope you enjoyed the brief time you had to communicate. xx

  • Oh yea...

  • I think we all wish we could just go back to the days when it was a normal life with our spouses. While moving things around in my garage, I came across the tote with our "love letters" we wrote to each other while Jim was stationed in the Army. I started to read them and what a comfort they gave me. I read several one night and many the next until my eyes were out of focus. I just felt a better connection to Jim and for a while forgot he has PSP. Then yesterday, reality hit, he wanted to go home, so I took him from the nursing home for at least 4 hours in which all he done was sleep and visit the bathroom here at our house. Back at the nursing home later, he slept through having our family there to visit. He wouldn't talk and was so distant. Well my good feeling about us only lasted a short time, but it was worth it. Maybe I can feel that way again when I finish the rest of the 60-70 letters waiting to be reread. Thanks for letting me rank and rave. It can get depressing, but when you know someone from this forum cares and hears you, it makes it so much easier. johns65

  • I did the same awhile ago. Heartbreaking but comforting to know there was so much love.

    My Barry still manages to purse his lips for a kiss and I value that with all my heart. Enjoy reading the rest.

    Much love. Althea 💛🙏

  • God Bless all of us

  • Dear Cuttercat, I know exactly how you feel .... just when there's hope it is shattered again a while later.

    You are very polite with your description of PSP as being crazy and nutty and wild. You should be a fly on the wall when I let rip.

    Much love to you 💛🙏

  • Yes we must enjoy the good times. 😍

  • I am so glad you had that brief visit with who he used to be.I could identify maybe a few moments like that with Don before he passed away but never a full day.

    Oddly I had a dream a few nights ago in which he visited me,smiling and talking.I consider it a gift from God also Love,Janet

  • I had similar with my mum. Having not had more than the very occasional word from her for over a year, last week she called me by name and broke into a 10- minute conversation with me, during which she asked questions about my holiday and boyfriend in context. It was wonderful to have a chat with her and to know she cares about me as much as I do about her. Next day, she woke up from a doze and when I said 'ah good you are here again,' replied 'I always am!' I have since reflected and have realised two things: 1 that she may not be recognising me as I am now but may be thinking that I am my younger self as she didn't ask about my children etc. And 2 that as she didn't complain about her multiple disabilities or any discomfort she may not be aware of them - which is what I dearly hope for her. One thing is sure - both cbd (which is my mum's disease) and psp are bizarre and terrible conditions for all those whose lives they touch. Blessings to all who read this. Mary

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