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    Faith restored

    Just had the hospice guys round and they have set my mind at rest. I didn't mean the stuff I have said before. πŸ˜πŸ˜πŸ˜˜πŸ˜€xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    now i am intrigued (is that the right spelling?) what did you say before? what made the difference?

    love nosey

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      #3

      Glad someone has managed to set your mind at rest. xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      ​

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        #4
        I'm not sure what you said before Matthew but I'm so glad you have peace of mind today. πŸ™‚

        Love and hugs to you,
        Debbie x😘

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          #5
          Originally posted by matthew55 View Post
          Just had the hospice guys round and they have set my mind at rest. I didn't mean the stuff I have said before. πŸ˜πŸ˜πŸ˜˜πŸ˜€xx
          That's good news...I think πŸ‘
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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            #6
            just like matthew to keep us in suspense

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              #7
              Or is that suspenders?

              Sorry, I am the hysterical phase of tiredness now, I'll get my coat...
              Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

              Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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                #8
                I was disrespectful to them. Said that they were useless basically. πŸ‘πŸ€—πŸ˜πŸ˜˜xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #9
                  Hi Matthew, you well know I bang on about hospices as a useful resource for support.I think at the time you were having a rough time all round and in and out of hospital
                  It sounds like you have good carers,an OT. On rehousing list etc.Hopefully this has improved your life a bit.
                  Great to here the hospice are also on board now.
                  Best wishes
                  Mary

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                    #10
                    Mary C thank you so much. πŸ˜€πŸ˜˜πŸ˜πŸ€—xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #11
                      Sorry to read that Matt. They won't take it personally, I bet they understand when you or others have a rough time, you can say things you don't mean, probably water off a duck's back to them... xx
                      Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                      Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

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