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    Mute reality

    I may not be able to form words but I still have a limited vocabulary of sounds. I can sort of laugh and attract attention, and make random sounds usually when I'm doing something. I actually think I make more noise now than I did when I could speak. Oh and I don't find eye contact particularly important but people talking normally to me is a welcome thing. To strangers at first contact I make sure they know I am mute but not deaf or stupid. It's really not such a big deal once you get used to it. 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
    Glad you are coping Matthew
    It gives me hope that I can accept and get used to it when I can’t speak
    best wishes
    Mary

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      #3
      I know it's a scary prospect but it is what it is and it's just one more thing to deal with. Hopefully I will be here to support you when it goes. 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

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        #4
        You support us all in many different ways Matthew. Thank you. X

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          #5
          Thank you for your kind words. I'm welling up 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

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            #6
            I have just tried to contact 2 carpet shops for an appointment to measure up and give quote for when my adaptations are done. I explain I have motor neurone disease which makes talking difficult for me, though still understandable, so I would prefer to arrange a date online. They don't reply! Maybe they think it's catching, I've lost it, they won't be able to understand me or what?? My son contacts them and gets an appointment straight away. So infuriating!
            Diagnosed July 2020, ALS bulbar onset.

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              #7
              I have a similar problem with my GP surgery. I send a message on the online system and sometimes get a response the next day. 😀🀬🀯🀐xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #8
                Originally posted by Heather R View Post
                My son contacts them and gets an appointment straight away.
                So much for Equal Rights 😑😑

                ​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
                  I don't think anyone answers emails. If the phone rings they get to answer it but I'm not so sure anyone is obliged to monitor emails. I'd rather email because they can answer and I can pick up when it suits me. They've obviously got so much work they don't need the trade. πŸ™„

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                    #10
                    I have no option but to send an email. Try not speaking for a day. 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

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                      #11
                      Hello everyone again. Does anyone know if there is a drug or something which can help with controlling saliva? I guess its because my swallowing is not working properly. At the moment I have a tissue handy but what can I do when my hands don't work. My left hand is getting quite a bit weaker. I tried to do voice banking today but my voice is not clear enough so I shall use my daughter's voice. She sounds a bit like I used to.

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                        #12
                        Originally posted by Hakuna View Post
                        Does anyone know if there is a drug or something which can help with controlling saliva?
                        Yes, there are a few different meds - I take glycopyrronium bromide. Your GP will prescribe you something and it make take a few days to hit on the correct dose. Also, if the first med doesn't suit you, don't despair, there are other meds and treatment options.

                        Originally posted by Hakuna View Post
                        I tried to do voice banking today but my voice is not clear enough so I shall use my daughter's voice. She sounds a bit like I used to.
                        That's a good plan. 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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                          #13
                          I use Hyoscine patches although not convinced they’re very effective. I have tried Glyco and Atropine but they didn’t really work for me. I’ve had radiotherapy on saliva glands which worked well for a few months until weakening lip muscles made saliva management difficult again although I like to believe it would be worse without the radiotherapy.
                          Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                            #14
                            Thank you. I'll ask the GP if he can prescribe something. But maybe better to ask at MND Clinic as GP not v knowledgeable. I'm encouraged to hear you are eating normally John D, albeit messily 2 years into yr diagnosis.

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