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Met a gorgeous man today

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    Met a gorgeous man today

    Just a big hello to Onein300 - so lovely to meet you today. Was great to bump into someone from here and he instantly recognised me as TinyLady 🀣
    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.

    #2
    Of course - you're famous!
    Probably recognised you from all your press coverage
    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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      #3
      TinyLady you'll have to get a stack of signed photos ready for you're fan club!
      Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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        #4
        Will you use the page 3 version with nothing but the boa? πŸ˜‰
        when i can think of something profound i will update this.

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          #5
          Love the idea of my fan photos 🀣 especially just the feather boa one. I'll have to keep working on increasing my fan base. Maybe I can become an "influencer" 🀣
          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


            #6
            Originally posted by TinyLady View Post
            Maybe I can become an "influencer"
            Ooh, yes - then you'll be sent top of the range wheelchairs, mattresses, hoists etc and won't need an OT 😁😁
            ​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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              #7
              And longer boas. 🀣
              when i can think of something profound i will update this.

              Comment


                #8
                Originally posted by Ellie View Post

                Ooh, yes - then you'll be sent top of the range wheelchairs, mattresses, hoists etc and won't need an OT 😁😁
                Not sure I can endorse not needing an OT!! πŸ˜‰
                Mind you after some of the shocking stories I've read on here some would be better off without one!
                Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                  #9
                  Originally posted by Tabbycat View Post
                  Not sure I can endorse not needing an OT!!
                  Present company excluded 😁

                  I was thanking my OT last week, saying how much I appreciate her improving my situation and she teared up - when she composed herself, she said, "that's why I do it, thank you so much for saying that" (which set me off πŸ₯΄)
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  ​

                  Comment


                    #10
                    Originally posted by Ellie View Post

                    Present company excluded 😁

                    I was thanking my OT last week, saying how much I appreciate her improving my situation and she teared up - when she composed herself, she said, "that's why I do it, thank you so much for saying that" (which set me off πŸ₯΄)
                    😍 πŸ’š
                    Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                      #11
                      It was great to meet you TinyLady! What a great conference.

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                        #12
                        Onein300 - it was incredible. I learnt so much and came away exhausted but inspired. But so good to meet other people with MND. I don't do that enough!

                        Hope you got home safely and you weren't too exhausted x
                        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

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