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    Noises

    My husband is bulbar onset. No speech at all now but he is constantly making funny noises. Moaning and groaning almost with every breath, day and night! Is this common?

    #2
    Hello, I am mute because of Bulbar and I make all kinds of odd noises 😃x

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      #3
      Hi Lynda. I too have bulbar onset and wake myself up at night making weird noises ! It also happens when I bend over, clean my teeth, and sometimes when I exhale. It’s fascinating . In fact sometimes it takes me by surprise and I turn around thinking it’s my husband, but I can’t blame him, it’s definitely me😊 x

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        #4
        Hi Lynda,

        Is his breathing OK?

        It's very common to grunt and groan once the voice goes - doesn't matter if one was bulbar or spinal onset - but for it to be 24/7 and with almost every breath, is less so. I would mention it to his Doctor, to be on the safe side.

        Has he told you why he thinks it happens? Does it distress him?

        Take care.

        Love Ellie.
        ​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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          #5
          I feel relieved to hear that this is not uncommon. It doesn’t distress him and he has no control over it, but I do find it irritating! Its like a dripping tap that once you hear it, its difficult to ignore. He has no breathing problems at the moment. Thank you for putting my mind to rest. I feel an amazon delivery of ear plugs - between his noises and the whirring of the feeding pump - I’m not getting much sleep.
          Lynda x

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            #6
            My mum makes lots of noises and she gets really embarrassed when it happens in public.

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              #7
              I sleep in another room, as my wife likes to stretch out and traps my arm/shoulder and I cant move. She snores too.
              Diagnosed 2nd Jan 2020
              Both arms/shoulders affected, left worse than right.
              Progressive Muscular Atrophy suspected

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                #8
                Can you not day feed? I'm thinking of trying my backpack.😁x

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