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    Breathing

    Hi all how did it feel when breathing started to go if u don’t mind me asking. I’ve had mnd a year now and my right arm and left hand is non existent but still walking like a penguin. I feel like I’m always trying to get a deep breath during the day but at night I seem to sleep ok but just wake to move.
    not sure if it’s anxiety’s or me panicking. I feel refreshed when I wake and don’t sleep during the day.
    thanks for any advice
    wayne 😘

    #2
    Wayne, I first noticed that I'd run out of breath mid-sentence, that was very early on. At the same time, I could breathe easily, both day and night, and walking didn't make me breathless - mind you, walking was more of a tentative shuffle!

    I can identify with not being able to take a deep breath as an early warning sign. See your physiotherapist who can teach you breathing techniques - never too early to start - and, if you're lucky, give you an LVR bag/modified Ambubag to keep your breathing as good as possible, for as long as possible. Maybe ask for one, if it's not offered.

    Is your cough still strong? Could you blow out a cake full of birthday candles (not that it's acceptable to blow germs over communal food - what were we thinking!!!)

    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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      #3
      Hi Ellie yeah cough is still strong and I can put my breath all over a cake 😂😂
      The losing breath during talking is definitely happening to me though. People tell me it’s just anxiety but I don’t think it is. Thanks Ellie

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        #4
        You're right, it's not anxiety, unfortunately it's breathing 😣
        ​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
          It’s as if I have moments where I struggle to breathe for about 30 mins to a few hours then it goes away then comes back like 2 days later and I have another episode. The one I’m having at the moment though has lasted about 24 hours. Is this something you have came across? X

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            #6
            🤔 That sounds a tad dramatic (and scary) I think a lot of us experience some sort of these episodes.

            Similar has happened to me when some left-behind food irritated my throat - it eases quicker without panic breathing, a learned skill!

            I had a laryngospasm once where the throat constricts, breathing is very difficult, but it passes - again, quicker if not panicking!

            I suggest contacting your team for an evaluation, even by video for now.

            Keep an eye out for allergens or irritants too, especially if rooms are overly warm. As I said, relaxing through an episode will get you back to normal quicker - sitting by an open window may help and tell people to give you space and not to fuss, should it happen again.
            ​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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              #7
              Thank you Ellie the last bit about people fussing is correct👍🏻 It just don’t help things 😘

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                #8
                Hi Wayne or house44
                when you said about walking like a penguin you made me think. My husband was having symptoms but as he's 70 next year and we live in Portugal I just thought most of it was age and high temperatures. But I did notice he was walking differently, slapping his feet and I used to ask what on earth he was walking like that for. His walk is still different but it's hands and arms that have the worst of it.
                Denise xx

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                  #9
                  First signs of weak leg muscles, I think. That's what my left leg is like. He'll catch his foot next.
                  Each day is made easier with a bit of humour.

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                    #10
                    Blimey Gary don't encourage him. He was out again this morning. 😕

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