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Thread: The Elephant In The Room

  1. #1
    Forum Member Ellie's Avatar
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    The Elephant In The Room

    Coronavirus /Covid-19

    I certainly donít want to scare those of us with compromised respiratory functions but, letís face it, itís a worry, right??

    If any of us were to get it and end up in hospital, please, please be aware of how harmful oxygen (O2) use can be to us and tell your carers and family too.

    With weakened respiratory (breathing) muscles, our ability to get rid of carbon dioxide (CO2) is impacted, leading to a retention of it in our blood (called hypercapnia) This hypercapnia is usually more dangerous to us than low oxygen sats (hypoxia) but doctors are conditioned to increasing low sats using oxygen - and the vast majority of doctors seem unaware of our inability to effectively expel CO2 if given O2.

    The best way to treat poor O2 sats is using NIV (BiPAP, Nippy) even if you donít use it at home. If O2 is used for a short and limited time, it should be done so with caution, preferably with NIV & regular checks on the CO2 levels.

    So, Iím guessing weíre all experts on handwashing now

    I truly hope we are all sparedÖ

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #2
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    Thank you so much for this valuable information Ellie.

    I agree this is a worry. I have just been given the all clear to fly home after my pulmonary embolism and now we're worried about germs on the flight !

    We have been in Spain since the middle of January and the medical care has been excellent.
    However, When I was first admitted to hospital they wanted to give me oxygen as a precaution and it was only because of the information on this forum that I was able to explain using my rubbish Spanish that it might not be right for MND people.

    It not all been bad however as we've escaped the storms and had family to visit.

    Thanks again Ellie and I really hope we stay virus free.

    Love Debbie x

  3. #3
    Forum Member nunhead_man's Avatar
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    Good afternoon Ellie,

    You have just answered the question I was about to post as I was looking at some of the Corvid-19 stuff and the lesions on the lungs of some of those affected.

    Can I echo your thoughts that I am washing my hands as advised heartily hoping that I get nowhere near this virus although I suspect that is a faint hope.

    May I have your permission to use some of the material in your message when I think it might do some good?
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  4. #4
    Forum Member Ellie's Avatar
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    Quote Originally Posted by nunhead_man View Post
    May I have your permission to use some of the material in your message when I think it might do some good?
    Yes of course, Andy, it's important - you might want to change the language but give the same message.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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