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Can you hear the pin dropping?

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    Can you hear the pin dropping?

    I can, where is everyone? πŸ‘€πŸ˜³πŸ€—πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    πŸ–πŸ»I'm here buddyπŸ€“
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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      #3
      Me too
      It's all funny

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        #4
        We're like rent-a-mob you can rely on us to turn upπŸ˜‚πŸ˜‚
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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          #5
          I'm here too ! XxπŸ˜˜πŸ€—β€

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            #6
            πŸ–πŸ»another mob member
            Deb
            Forum Member
            Deb 😘
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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              #7
              Hi Matthew,
              having a lazy day
              Just reading, tv and not been out.Grandchildren( twins) arriving after school and staying for dinner joined by their other 2 siblings.
              I have some days where I want to go out or see friends but need quiet days too.
              Hope your day is going ok.
              Best wishes
              Mary

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                #8
                I'm not here 😍😍😘

                Been busy; nurse came twice today, because I'm worth it 😊 No, she put a dressing on my Gruffalo foot, then returned with more. 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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                  #9
                  Originally posted by Ellie View Post
                  I'm not here 😍😍😘

                  Been busy; nurse came twice today, because I'm worth it 😊 No, she put a dressing on my Gruffalo foot, then returned with more. xx
                  Hope your foot is ok
                  Ellie
                  Forum Member
                  Ellie and not painful at all xxπŸ˜˜πŸ€—

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                    #10
                    Not painful at all
                    Deb
                    Forum Member
                    Deb OT & Physio were here this week and asked the nurse to take a look at my feet, just in case, and she brought some nice foam dressings. 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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                      #11
                      Hello all, I had the MND nurse today for a catch up. All sorts of things arranged including talk about NIV and a DNR arrangement . On the bright side a friend turned up with a delicious strawberry pavlova t help with my calorie intake!

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                        #12
                        Originally posted by Rosemary6NT View Post
                        I had the MND nurse today for a catch up. All sorts of things arranged including talk about NIV and a DNR arrangement . On the bright side a friend turned up with a delicious strawberry pavlova t help with my calorie intake!
                        A day of two halves Rosemary... 😏😘

                        ​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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                          #13
                          Originally posted by Ellie View Post
                          Not painful at all
                          Deb
                          Forum Member
                          Deb OT & Physio were here this week and asked the nurse to take a look at my feet, just in case, and she brought some nice foam dressings. xx
                          Glad that your foot isn’t painful and that you’re nurse is looking after it xx
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

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                            #14
                            Sorry to hear about your foot Ellie xx

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                              #15
                              In hospital - planned visit for follow up sleep study and adjustments to ventilator. Lots of other things addressed too and fantastic that my wife (carer!) has been able to stay too. A bit like camping for her, but so helpful now I’m getting so helpless. Home tomorrow
                              Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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