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    Afternoon folks 😘😘

    I was searched on the way out and relieved of all of the contraband 😏

    I had an amazing sleep last night πŸ‘πŸ‘ and was on top form for β˜• 🍰 with some friends this morning. 😎 xx
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    ​

    Comment


      Well plumber has been, diverter valve leaking in boiler. Still no hot water while waiting for part.

      Plumber is a good bloke, did lots of work (including moving boiler) to make way for wet room in our utility room and plumbed in new radiator in the dining room to make it suitable as our bedroom and fitted radiator in conservatory. Couple of days work but refused to take any money because we have been good customers in the past and recommended him to lots of people.

      So he won't rip us off.

      We donated his quoted fee to the hospice on his behalf, but he didn't want the recognition - he is a lovely man.

      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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        Wow nice plumber MMG πŸ‘, but sorry you’re still without hot water 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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          Originally posted by MMG View Post
          Couple of days work but refused to take any money because we have been good customers in the past and recommended him to lots of people ... he is a lovely man.
          A true gentleman indeed 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


            Sorry everyone, I've just been catching up as seem to have had a tough few days and sense of humour was lacking. But it has cheered up reading all your banter.

            Glad you escaped Elsie. I'm thinking next time I rescue someone I might just take their place... see if the grass is greener 🀣

            My wetroom is finally finished except a few hooks etc. Builders were nice enough, but not the same service as plumbers or washing machine repair men.
            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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              Morning everyone. Nice to know all your plumbing needs have been met.

              That's not a bad idea TinyLady. They cant find a care home for Stephen so I think we might have to do a reverse rescue to get him in. I was watching 'the league of extraordinary gentlemen '. Might come in useful though not sure how useful a submarine will be. πŸ€”
              when i can think of something profound i will update this.

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                denise - yes, a reverse rescue sounds like a plan. Never rule out any transport. My friend has an outdoor volleyball competition all weekend, she says it's guaranteed to be torrential rain and floods whenever she has one.
                Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                Comment


                  So we might find the submarine handy in the floods.😊 TinyLady Think the idea of kidnapping useless health workers might also be a good plan. We could retrain them 😈
                  when i can think of something profound i will update this.

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                    denise can't be bothered to retrain them. If they are not even kind then no matter what they know they are useless. I think drug testing on them would be more useful.
                    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                    Comment


                      Morning all. Sounds like all manner of mischief being plotted here
                      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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                        TinyLady I like your way of thinking. 😈 we could donate them to medical science. We could be like modern day burke and hare. I'm sure I've got the right names. Hope someone doesn't point out they are plumbers and I'm looking at the wrong profession. 😳
                        when i can think of something profound i will update this.

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                          WheelsOfSteel - mischief plotting? Here? With denise? As if that was ever likely to happen....

                          But donation to medical science is a perfect idea. Preferably MND research. Not sure if those two are plumbers... might have done some plumbing in their spare time
                          Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                          Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                          Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                          Comment


                            🀣🀣 please add for medical research all those politicians who have failed to sort out social care 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 looks like we have someone else on board. Might need a bigger submarine. 🀭
                              when i can think of something profound i will update this.

                              Comment


                                Originally posted by TinyLady View Post
                                WheelsOfSteel - mischief plotting? Here? With denise? As if that was ever likely to happen....
                                I now have visions of "plumbers" (nudge nudge, wink wink) tied up with feather boas hanging from the hooks in your wet room
                                EB19810101REVIEWS101010344AR.jpg

                                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.

                                Comment

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