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    #3466
    I hope everyone has been OK today, sounds like a few of you are struggling with the heat.

    I can't spread the fingers apart on my left hand any more, they just ignore me. It's extremely weak and clumsy too.
    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!
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      #3467
      Good evening everyone. Oddly enough I’ve been using the Vulcan salute to track my hands’ progression. Nice to know I’m not the only Trekkie here. I just noticed last week that my left had is not cooperating. My right pinkie is not playing well with others and has been sulking off by itself for months now.
      Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.
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        #3468
        Made it home finally!!!!! 😌 Damn that was a long tiring day. Paris airport was NUTS πŸ₯œ!!! One guy rammed my wheelchair with his baggage trolley, smashing my foot (cracked my toenail and left bruising) 🀯 Crazy people!
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          #3469
          Glad you made it home in mostly one piece AngieCanuck. I’m hope you had a memorable trip.
          Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.
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            #3470
            Stephen's hands cant do anything. They're not stuck or pointing. I can only describe them like hes got loose gloves on his hands that are just limp. They look swollen and reddish. He can turn them over but they are useless. Saying that he managed to open a cigar tin and get one out. Couldn't light it but stood there with it in his mouth. Never figured out how he did it. πŸ€”
            when i can think of something profound i will update this.
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              #3471
              Love peoples descriptions of their hands, my curled up πŸ†™ left hand is definitely the worse for getting in a pocket, let alone a glove, even a mitten. Picking things up can be a whole frustrating game of trapping the thing against something else and trying to lever it upwards. Glad you’re home more or less safely Angie. 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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                #3472
                Good morning lovelies 😘😘

                Welcome home AngieCanuck Time to put your feet up and rest those 9.5 toenails - recharge your batteries πŸ‘πŸ‘
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user                .
                ​
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                  #3473
                  On the subject of hands: my hands are now so tiny they're thinner than my hands, making it impossible to keep an ID wristband on 😏

                  After 4 bands fell off, they got the message and gave up - big win for me, I don't like wearing them. I mean, why would I want a QR code on me and be bipped like a tin of beans in Tesco πŸ˜‚πŸ˜‚
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user                  .
                  ​
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                    #3474
                    Ellie Why do you have a band? Do you mean the mnd thing?

                    Not sure about baked beans - more like a cabbage 🀣

                    I mistakenly went to use @ Elsie thankfully it didn't work πŸ€—
                    when i can think of something profound i will update this.
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                      #3475
                      Originally posted by denise View Post
                      Why do you have a band?
                      In case I'm tempted to escaped from Alcatraz - chance would be a fine thing, I can't open door handles 😏😊
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user                      .
                      ​
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                        #3476
                        Hear that gang? We need to go in and mount a rescue mission. πŸ˜‰
                        when i can think of something profound i will update this.
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                          #3477
                          Chocks away - shelly21 get the Chinook 😁
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user                          .
                          ​
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                            #3478
                            🀣🀣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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                              #3479
                              We might need to rethink our uniforms. Black balaclavas in this weather might be a bit hot. No one wear anything identifiable, not sure what everyone thoughts are on this? Just got on the scales this morning and it has to be pretty big! 😎
                              when i can think of something profound i will update this.
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                                #3480
                                Ok, I'm hearing we need a rescue mission and disguises?

                                Something red and sweaty looking shoukd work. Afterall thats what most people look like at the moment.

                                Then we need to replace Elsie with a tin of beans so they don't notice she is gone....

                                Just one question though...who CAN do door handles... denise - can we put you down for that?

                                Had to edit. My typing is shocking
                                Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                                Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!
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