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    Our secret is out!!!

    😳🀣
    when i can think of something profound i will update this.

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      Oh WheelsOfSteel that has made me laugh so much. I'm yet to find one worth hanging in there... but maybe one of these days!

      denise I think we are going to need more boas
      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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        TinyLady You like them well hung? πŸ˜‰
        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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          Erm, sorry to interrupt... Afternoon plotters 😘😘

          Meat hooks and submarines sound rather tame for those excuse of HCPs me thinks 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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            We are all ears. Anyone got a better idea? We bow to your more ingenious cruelty. 😈
            when i can think of something profound i will update this.

            Comment


              Originally posted by Heather R View Post
              🀣🀣 please add for medical research all those politicians who have failed to sort out social care x
              That's quite a large cohort of guinea-pigs to experiment on, we should have a cure by the end of the week! πŸ˜‚πŸ˜‚
              Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                ​
                Come on - who's in!
                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


                  International rescue ready to roll. πŸšπŸš€β›΅πŸ¦Έβ€β™€οΈβ›·πŸ€Ί
                  when i can think of something profound i will update this.

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                    Originally posted by denise View Post
                    International rescue ready to roll. πŸšπŸš€β›΅πŸ¦Έβ€β™€οΈβ›·πŸ€Ί
                    I’ve got large collection of less than useful health care providers here. If you could manage to get that Chinook over to Canada πŸ‡¨πŸ‡¦, I would cheerfully donate them all to research πŸ”¬πŸ©Ί.

                    If you decide to use the submarine, I need advance notice so I can arrange to meet you. The sub can manage the St. Lawrence river and Lake Ontario but you’ll find Niagara Falls impossible (in either direction).

                    Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

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                      So we can get to Niagara Falls then we are stuffed. How many have studied the route on Google maps? Looks very exciting. I was wondering, for future reference, if anyone knows which is port and which is starboard and if they use this terminology on subs?

                      Looks like its Herbie the helicopter then.

                      Bit damp here. 😘
                      when i can think of something profound i will update this.

                      Comment


                        Top of the morning to my fellow fruitcakes!
                        This week I am having a virtual picnic with my Speech and Language team.
                        Seriously - they have sent me a shopping list of yoghurt, banana, bread and cookies, then we have a zoom video meeting where they watch me eat it to assess my swallowing.
                        Wish more appointments were fun like that
                        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


                          Sounds like fun. More meetings should be like that. Not sure I'd be able to keep a straight face with people watching me eat. 🀭
                          when i can think of something profound i will update this.

                          Comment


                            No no no! Laughing when trying to eat is pretty lethal I find 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 lovelies 😘😘

                              denise That TV programme about dolphins which we watched yesterday gave me an idea - we can tie those useless HCPs who constantly let you down onto the backs of orcas as they migrate to their annual feeding frenzy, but not too tight so they eventually happen to fall off, oops! xx
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              ​

                              Comment


                                Originally posted by WheelsOfSteel View Post
                                ... we have a zoom video meeting where they watch me eat it to assess my swallowing.
                                Just to clarify Eddie: nobody will feel your neck/throat during this swallow 'assessment', it's visual only?? xx
                                ​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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