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    #61
    Oh that's good news Denise - have the tea and chocolate digestives on standby. ๐Ÿคž๐Ÿคž he/she is good. xx
    โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    โ€‹

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      #62
      Ellie I don't think we're supposed to offer food or drink and think no one should use the loo. That's what we've been told. Covid rules ๐Ÿ™„
      when i can think of something profound i will update this.

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        #63
        The world has gone mad.

        We're going to have to learn to live with Covid, it'll be around for a while yet... xx
        โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        โ€‹

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          #64
          denise
          Great news the community nurse is coming to see you both.My suggestion would be a list / bullet points of what help you need ASAP.
          You mentioned regular breaks., day care etc.If the nurse doesnโ€™t have the info hopefully he/ she will find out.
          Also helpful to know if he/ she will be your turn to person and are they going to refer Stephen to the local hospice ?
          Really hope Tuesdays meeting is productive .
          Best wishes
          Mary x

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            #65
            Originally posted by denise View Post
            Ellie I don't think we're supposed to offer food or drink and think no one should use the loo. That's what we've been told. Covid rules ๐Ÿ™„
            I always offer visiting people(OTs etc) a cold drink...bottle of water...can of coke...they all say we're not allowed due to covid๐Ÿค”

            The only one who accepted....was from the hospice๐Ÿ‘๐Ÿ‘๐Ÿ‘

            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.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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              #66
              Originally posted by LindaB View Post
              The only one who accepted....was from the hospice
              'Nuff said. xx

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

              โ€‹

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                #67
                We get to eat the biscuits ๐Ÿ™‚

                thanks Mary yes I hope I get some help/advice but I'm just going to wait and see. Keeping my fingers crossed.
                when i can think of something profound i will update this.

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                  #68
                  Let's hope the outside stairlift doesn't rust and shoot you. ๐Ÿ˜‚๐Ÿ˜‚xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                    #69
                    Very funny Matthew ๐Ÿคฃ I've had to cancel outside stair crawler appointment because we've got to go for pre OP assessment appointment for his peg replacement.

                    Monday fire assessment being taken out on our tiny shared hallway. cost ยฃ400 to both flats. I'm stuck for words. I could understand them checking the fire escape but the hallway ! ๐Ÿ™„
                    when i can think of something profound i will update this.

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                      #70
                      Health and safety ruined our country ๐Ÿ˜ก๐Ÿ˜๐Ÿค—๐Ÿ˜˜xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                        #71
                        Originally posted by denise View Post
                        I've had to cancel outside stair crawler appointment because we've got to go for pre OP assessment appointment for his peg replacement.
                        Hope it goes smoothly Denise, no last minute glitches ๐Ÿคž๐Ÿคž๐Ÿ˜˜

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

                        โ€‹

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                          #72
                          Ellie I'm thinking covid testing if hes got pre assessment before hand then when and who does covid test before hospital admission?
                          when i can think of something profound i will update this.

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                            #73
                            How long between pre-admission assessment and day of procedure?

                            Originally posted by denise View Post
                            ...who does covid test before hospital admission?
                            Hopefully someone who had a hospital admission recently enough can answer that for you. Have you some lateral flow tests at home? xx
                            โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            โ€‹

                            Comment


                              #74
                              Originally posted by denise View Post
                              Ellie I'm thinking covid testing if hes got pre assessment before hand then when and who does covid test before hospital admission?
                              We're in Scotland so it may be different here but when my husband went into hospital earlier this year (twice in May and once in June) somebody came to the house each time to do the test. On one occasion we were asked to travel to the local test centre but I said we couldn't manage it and it wasn't an issue. Then we had to isolate until admission - twice they came on a Sunday and he went in on the Monday or Tuesday, I can't remember which.

                              Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

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                                #75
                                It's another post code thing because in Wigan borough they come to your house for gets. โœŒ๏ธ๐Ÿ˜๐Ÿค—๐Ÿ˜˜xx
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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