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    Morning everyone. Been up for nearly an hour. I have no idea why but George having wiped the rain off his coat on my legs is just sitting there staring at me. I always find this unnerving he will either bite me or try to push me off my chair. Wrong he just beat up his sister. Let's me off the hook😳.
    when i can think of something profound i will update this.

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      Denise is George still fending off the deflea treatment or have you braved it already? 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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        Heather R I wish I could say yes I braved it but when its peaceful and its raining and I'm stuck inside with them I really don't want to create havoc or bleed! Basically I want one of them asleep. Tip toe into the kitchen, get the tube ready and sneak back ready to do the dastardly dead. It's like they can read my mind. 😳😸😼😸
        when i can think of something profound i will update this.

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          Hey up m'dearios
          I know it's late, but I was waiting in for some new kit to turn up.
          My hospital bed arrived today 😌 and I must confess I have spent the last quarter of an hour playing with all the whizzy uppy downy buttons
          Can't wait to go to bed tonight...
          Hi, I'm Eddie.
          Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
          Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
          Still wondering what the future will bring.

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            They’re great aren’t they, Eddie. Don’t know what I would do without mine. Just be warned not to press too hard on the end, or you will end up with a big hole in it, and wait forever to get it mended. 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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              Good afternoon Early Birds, Late Birds and Shy Birds 😘😘

              WheelsOfSteel Enjoy your fancy bed Eddie - hope the mattress is comfy, if not, you may as well have taken delivery of a shopping trolley 😬

              Heather R My bed has a vertical bar halfway along the end of the bed so I think that lessens the possibility of putting my foot through it, not that I could anyway. I gather your bed still has a jagged gaping hole in it??
              ​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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                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 Take care not to tear your skin on those jagged edges, Heather 😬
                  ​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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                    Heather R that is some hole. Definitely kicked your way through that one! 😳
                    when i can think of something profound i will update this.

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                      Heather R dang girl, that was a determined escape attempt!
                      I just chew through the straps
                      I have looked at the foot board on my bed, and it looks more substantial.
                      Certainly couldn't kick through it with my wobbly legs.
                      Hi, I'm Eddie.
                      Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                      Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
                      Still wondering what the future will bring.

                      Comment


                        Morning all from a drizzly East Mids 😘
                        Foxes Never Quit πŸ’™

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                          Good afternoon everyone,

                          JamesW, just wondering if you'd changed your username because of your team's indifferent start to the season.πŸ˜’

                          . As a Leeds fan I've learnt to enjoy each win before the wheels come off the bus.

                          As a football aside, my palliative care consultant asked me if there was anything I missed doing. When I said going to Elland Road because wheelchair places are hard to get and very exposed to the elements they said they would get some for us in the hospitality suite. What a doctor !!

                          ​​​​​​​Hope your team picks up soon ( although not at Leeds expense !) Xx😘

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                            Deb looooooool 🀣🀣🀣

                            Sadly mixed success is all part of following a team like Leicester (or Leeds for that matter). However I’m a firm believer that the bad times make the good times that much sweeter….. something the glory supporters don’t know too much about πŸ€·πŸ»β€β™‚οΈ

                            I don’t think we play you until the back end of October so by then I think we will have a good idea of what season is gonna look like for both of us πŸ‘x

                            😘😘😘
                            Foxes Never Quit πŸ’™

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                              Late Bird here (again), not a fan of worms anyway 😘😘
                              ​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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                                New extended bed arrived! Just figuring out what I can do with my fitted sheets and mattress topper! 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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