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Downhill racer

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    Downhill racer

    I asked for help getting out of bed today. Well at least I can have an extra dream or two. πŸ§€πŸ˜΄πŸ›ŒπŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Hi Matthew, are you struggling to get out of bed now?Hope your care agency will add this to your care plan if it’s now needed.
    best wishes
    Mary xx

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      #3
      Starting tomorrow morning I get to dream till 915. I struggle to get my duvet off and get my slippers on. Tomorrow I get that done plus my glasses and alarm necklace given to me. Then they will haul my sorry arse off the bed! Bliss! πŸ›ŒπŸ˜΄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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        #4
        matthew55 they've got the key safe number now thenπŸ‘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. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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          #5
          Hi Matthew, as Linda said I hope you have a keysafe and maybe a lifeline system?( my lifeline provider asked that they are informed if and when I can longer speak to record on their records.)They would then contact me if I press lifeline to say they will ring my contact numbers for husband and relative who is also a key holder.
          Sounds like you are getting the support as things change for you.
          Best wishes
          Mary x

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            #6
            First day worked perfect! Now for the new voice. Happy Day! πŸ‘πŸ˜πŸ˜πŸ˜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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