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Getting better ?

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    Getting better ?

    Hi everyone, how is it possible that my partners diaphram is at its worst, his oxygen was at 87 and was on NIV throughout the night and sometimes in the day. He was struggling to put a sentence together as talking made him out of breath since March/ April time.
    Now his breathing seems a lot better, can spark sentences and can lie down flat without NIV. Is he making a miraculous recovery or is this normal.
    It’s good news but very strange. Is it the calm before the storm? Has this happened to anyone else.?

    Don't know but I hope it continues Jo Jo x


      Jojo That is great for you both, JoJo, whatever the reason.

      Was he tested for pneumonia, chest infection, virus or Covid during that bad period earlier this year, or perhaps it was some days after a Covid vaccine? Recovery from an infection is the usual reason for an improvement in breathing function.

      If it's not attributable to anything, cross your fingers that it continues!!

      And no, I don't think it the calm before the storm.

      What is his average O2 Sats level now?

      Truly, I am thrilled for you both 🤗

      Love Ellie.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


        He fluctuates from 87 - 98 oxygen it’s really strange. No chest infection was found at the time and he’s been loosing his breath since about March until last week when I noticed he was talking better and hadn’t needed his NIV in the day. Due to this he wanted to try to lie flat to see what happens and there is no way he could have done this two weeks ago. He did it for about four minutes which is something I never believed was possible. The only medication they have changed is the baclufen for his anxiety so maybe it could be that.
        I think amazing whatever the reason and will keep you posted when he sees the respiratory team next week.



          that sounds good. May it continue.

          love and hugs Denise xxx
          when i can think of something profound i will update this.