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    Originally posted by keno View Post
    The first visit by the carer is tomorrow morning. I should be happy but instead, I am extremely apprehensive.
    Oh Ken, of course you're apprehensive - having some 'stranger' come in to shower and dress you is a huge deal on multiple levels.

    Both you and the carer will be nervous for the first few days, then it all becomes routine and you'll wonder why you struggled doing a half-handed job beforehand.

    I wish you all the best for tomorrow and hope, hope, hope so much that you get a good, competent carer. 🀞🀞😘😘
    ​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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      keno everything Ellie says is true.
      The carer will probably be as nervous as you... if not more so...after a few days you'll be into your routine and forming a good relationship.

      πŸ€—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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        Yesterday I started to think of ways and means to hasten my demise, imagining more and more often the terror of not being able to breathe. But as I wake this morning I can’t imagine not seeing the light growing and the wind moving the branches ceaselessly about from my bedroom window…
        Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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          Good morning
          Could not get out of bed so looks like back to chair again.
          Extremely windy
          It's all funny

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            Good morning. At one am I needed my suction downstairs. I couldn't face going back up so slept sitting up on my trusty sofa. πŸ˜”πŸ€—πŸ˜ŠπŸ˜€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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              Good luck keno. 😘
              when i can think of something profound i will update this.

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                Morning everyone. The moon was shining in my bedroom this morning about 4am. I do love moonlight.

                Windy here. Sun cant make its mind up. 😘πŸ₯°πŸ€—πŸ˜˜
                when i can think of something profound i will update this.

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                  Rosemary6NT I can relate to those thoughts... times when I have to dig deep for any joy...which I do(for now). Yes trees ...birds....simple things.

                  keno hope all goes well with carer

                  @ matthew55 sorry to hear that...could the machine be moved to your bedroom at night?

                  Morning all...still high winds here. Stay safeπŸ€—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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                    keno I feel like you, full of apprehension about having a carer, whilst knowing that I have reached my limit with caring for myself. So I will keep my fingers crossed for you this morning and hope you have a good experience. I think I am finally getting carers in a couple of weeks x
                    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                      Rosemary6NT glad you have a view of trees and sky from your bedroom window, how lovely. I am being particularly comforted at the moment by beautiful spring flowers. Last night about 3am, I was feeling definitely time for those advanced decisions, after a horrible few weeks with the trauma of cataract operation (when they only agreed to my using ventilator literally just before going into the operating theatre), and then not being able to shake off a chest infection despite being on my second antibiotics. Roll on spring and good weather xx
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                        Heather R sorry to hear you've had such a tough time recently. Yes Spring must be on the wayπŸ™πŸ‘πŸ»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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                          I resisted for ages but now I can't live with out them.
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                            Wonderful
                            Carer named Tracey, 59 years old. She put me at ease right away.
                            washed my hair, washed me, and made my bed.
                            Mathew, you are right, they are angels.
                            It's all funny

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                              keno such good news πŸ™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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                                Me no lie 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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