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    Looks like I am a lucky one who got some sleep last night,, so Hi de Hi happy campers!
    Another heatwave on the way, so it's a knobbly knees contest by the pool after lunch, a donkey Derby in the afternoon, then dancing and bingo in the club house.
    See you there
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Still walking and talking, and wondering what the future will bring.

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      Good afternoon Lovelies 😘😘

      Beautiful week forecast 🌞🌞🌞 it'll be more than socks off, me thinks...

      WheelsOfSteel Hope you have a knotted handkerchief too 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.

      ​

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        I'm an early bird this morning. Dreadful day yesterday as it was thought Stephen might be suffering from a bleed on the brain after his fall on Thursday. Ambulance turned up very quickly but we spent 6 hours in the carpark. The doctor came out and apologised he should have been triaged and been seen to earlier. So hes been admitted and I was sent home. I just hope they did get him in asap.

        What a dreadful day.
        when i can think of something profound i will update this.

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          What a day Denise, thinking of you xxx
          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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            denise hoping you get some more sleep and today is a better day than yesterday seems to have been.
            Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

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              What an awful day, but this might be just what you need to get some help as they will have to arrange a "safe" discharge which should include help and support.

              Hope he is OK - sending you best wishes xxx
              Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

              Respiratory function - COΒ² Up

              No speech but sense of humour still fully intact.

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                Update. Hes still in the ambulance 😳
                when i can think of something profound i will update this.

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                  Oh no that’s awful! Hope they’re looking after him well, and nice ambulance people, and that you got some sleep xxx
                  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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                    Update. Out of the ambulance, had a scan and he does have a subjural hemorrhage. Now in emergency corridor.
                    when i can think of something profound i will update this.

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                      denise thinking of you ❀️
                      Foxes Never Quit πŸ’™

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                        denise am so sorry to read this. How r u coping? Are they allowing you in to see him? Really hope u r ok, and Stephen obviously! . Thinking of u. Xxx
                        Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                          denise
                          Oh Denise! What a time you have both had. As MMG says, hopefully now you will get access to the services you need.
                          Thinking of you πŸ€—
                          Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                            denise I'm so sorry to hear what's been happening, what a dreadful situation. I really hope that they can treat Stephen soon and things start improving. It must be very worrying but please do try to look after yourself as well, you must be exhausted. I hope they finally put the support in place that you both need for Stephen to be safe. Thinking of you x

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                              Hi everyone. Stephen's in hospital, he wont be treated, I don't think they want to put him through that because hes frail. Hes gone a long way very quickly. I cant visit because they haven't got a room and because this is classed as unsafe property he cant live here so they have to find him a care home or nursing home. I just hope its somewhere nice and friendly. I feel relieved because I couldn't carry on the way things have been but on the other hand 40 years of, not even the best marriage in the world it's still 40 years of something. The flat feels empty. 😞

                              Saying that 2 of my cats have been fighting and I put my foot in between them. Now I have a cat foot print where George gouged a bit out of my leg.

                              😼
                              when i can think of something profound i will update this.

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                                Glad they’re getting their fingers out at last, but terrible it has to get to this. Yes after all your exhausting caring with so little support, and 40 years together, it must be such a huge difference being on your own and his care out of your hands, and I bet you’re so exhausted. Sending love and hugs xxx
                                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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