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    [QUOTE=denise;n92604)
    Claire do not take your eyes off your nan. I've noticed they don't leave notes at the bottom of their beds.
    [/QUOTE]

    denise it's all done electronically now. At one point her oxygen level dropped as low as 89% and I had to go and find a nurse as no one seemed to be checking it. I just want to get her back to the peace and quiet of her room at the home now.

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      I've seen them filling in the paperwork with a pen then the files go to reception.
      when i can think of something profound i will update this.

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        G'night John Boy
        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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          Morning Walton's. Looks like a nice day here.
          πŸ˜‰πŸ˜ŠπŸ™‚
          when i can think of something profound i will update this.

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            Morning! It’s a quiet Sunday morning with no plans for the day.
            Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

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              Afternoon you Lovelies 😘😘

              Cold night last night, good job I'd upped the heat on my electric blanket #SnugAsABug

              ​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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                Originally posted by WheelsOfSteel View Post
                Somehow makes sense to call one Ellie though ​
                I'll take that as a compliment, Eddie πŸ˜‰πŸ€ͺ😘
                ​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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                  Morning everyone. I'm listening to BBC news and I gather there's going to be a piece on mnd and sport.
                  😘
                  when i can think of something profound i will update this.

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                    Originally posted by denise View Post
                    Morning everyone. I'm listening to BBC news and I gather there's going to be a piece on mnd and sport.
                    😘
                    Yes - the various rugby players raising awareness...

                    I don't follow sport, or watch much TV, but each time I’ve been in a hotel over the last year, with BBC breakfast on, they have had a feature on MND.

                    https://twitter.com/mndassoc/status/..._wGV794gA&s=19

                    The feature is from around 08:15 26/09/2022 when it's on catch-up iPlayer
                    Last edited by Arcadian; 26 September 2022, 10:22. Reason: link
                    2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                    Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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                      Good afternoon Hugglebuns 😘😘

                      My winter duvet is currently getting a good airing outside on the clothes line, ready for tonight πŸ‘πŸ‘
                      ​
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      ​

                      Comment


                        Ellie sounds like you are planning to sleep outside πŸ™‚
                        when i can think of something profound i will update this.

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                          denise Well, you know me - wherever the Duke goes, I go. πŸ˜‰πŸ˜‰πŸ˜˜
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          ​

                          Comment


                            Hi folks
                            Just a bit of a reflective day today thinking about "how the mighty have fallen".
                            We use propane gas tanks on our rural property, and we had to change one of them yesterday.
                            I had to watch my wife and son struggle to wrestle this thing out of the gas locker then roll it down the path.
                            I used to just hoist them up onto one shoulder and walk to the car.
                            I used to be so strong and capable - once
                            Apologies for wallowing in self pity...
                            Normal silly service will be resumed shortly.
                            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


                              I have bad memories of trying to move big gas bottles up and down 2 flights of stairs. πŸ˜”
                              when i can think of something profound i will update this.

                              Comment


                                Originally posted by Arcadian View Post

                                Yes - the various rugby players raising awareness...

                                I don't follow sport, or watch much TV, but each time I’ve been in a hotel over the last year, with BBC breakfast on, they have had a feature on MND.

                                https://twitter.com/mndassoc/status/..._wGV794gA&s=19

                                The feature is from around 08:15 26/09/2022 when it's on catch-up iPlayer
                                What is it with rugby and MMD? I can think of at least a good half dozen fairly young rugby players (league and union) that have fallen to this disease ….yet I struggle to think of sports people from other areas so much. Is it just that the rugby players are very good at promoting these things or is there something about susceptibility if you play rugby?
                                Foxes Never Quit πŸ’™

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