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Mute reality check

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    Mute reality check

    It still amazes me the amount of people who know that I'm mute yet still call my name hoping for an answer or insist on asking questions that require more than a yes or no. Or maybe I am just being a grumpy old man! πŸ§“πŸ˜‘πŸ˜‚πŸ€—xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Have you got a voice on predictable? If so you can hold your phone near to your tablet or iPad (if you’ve got predictable on that) and type to answer. If using Speak Unique there’s a phrase already set for something like β€˜can you wait please while I’m typing an answer’ or you can easily hit yes or no. Good luck 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.

    Comment


      #3
      I have tried this but sadly people are too impatient on the whole. My original scenario didn't involve a phone but thanks for the thought. πŸ“±πŸ’­πŸ€”πŸ€©xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

      Comment


        #4
        Ah, that’s awful and thanks 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.

        Comment


          #5
          Think you're a grumpy old guy myself - I've lost my emojis! What's going on? They're not working! HELP!
          when i can think of something profound i will update this.

          Comment


            #6
            Just smile, wave and nod, they'll get the message. Don't stress about it.

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              #7
              Waving is an effort and I can't nod. πŸ˜‰πŸ€—πŸ˜˜πŸ€©xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

              Comment


                #8
                Originally posted by aussiegirl View Post
                Just smile, wave and nod, they'll get the message. Don't stress about it.
                Here's an example of how stressful situations can easily happen at any moment to a person who cannot "Just smile, wave and nod":

                Recently, whilst being dressed after my shower, a carer caught my feeding tube in the folded in hem of my T-shirt and, in lifting up my arm to slip it into the sleeve, inadvertedly kept pulling on the tube, and I mean pulling hard.

                I cannot speak, my arms are paralysed, my head movements are not a viable method of communication and, as I was in pain which literally took my measly breath away, I couldn't even make a guttural sound to attract her attention, so she kept on doing it and I sustained a tear to the stoma site.

                And that's why Matthew, I, and plenty of others do stress about it...
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                ​

                Comment


                  #9
                  Well said. My carers pull my right arm when undressing me. The pain is considerable but all I can do is try and make louder noises. Sister by another mother. β€οΈπŸ˜πŸ€—πŸ˜€xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                  Comment


                    #10
                    Ellie
                    Forum Member
                    Ellie can't even imagine how distressing...I'm sorry to hear that. Truly awful.

                    matthew55
                    Forum Member
                    matthew55 can you write it down so they know?

                    I know these are not intentional by the carers but really not good enough! Training needed I think.😑

                    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.​​​​​​

                    Comment


                      #11
                      My right hand is too weak to write more than one or two words. Hopefully it will be better when I have a dedicated team. βœŒοΈπŸ€žπŸ‘πŸ˜xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                      Comment


                        #12
                        Ellie
                        Forum Member
                        Ellie . That's terrible!.I hope you heal quickly and are not in pain still.😘

                        matthew55
                        Forum Member
                        matthew55 . Youre not being grumpy at all. It beggars belief that carers are so impatient. i really hope your dedicated team is sorted soon.🀞

                        I guess carers are underpaid and because of this some feel undervalued but more training and understanding is needed. Reading the posts on here really drives it home how vulnerable we are. XxπŸ˜˜πŸ€—

                        Comment


                          #13
                          Ellie
                          Forum Member
                          Ellie what a horror story. If recent I hope that it heels well. If in the past I hope that it did heel well 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.

                          Comment


                            #14
                            matthew55
                            Forum Member
                            matthew55 good luck that your new carers are more careful so such painful things don’t happen again 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.

                            Comment


                              #15
                              LindaB
                              Forum Member
                              LindaB
                              Lynne K
                              Forum Member
                              Lynne K Thanks - because the tear is right on the stoma edge, it's very slow to heal, but the GP callen in the community nurse who knew exactly what dressing to use and, 8 days on, it's finally on the mend. πŸ‘πŸ‘ xx
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              ​

                              Comment

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