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Thread: Breathing

  1. #1
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    Breathing

    Was wondering about breathing problems with mnd. On my recent visit with my dear friend I noticed she was breathing differently. Not really sure had to describe it, other then to say I was hearing her breaths coming thru her nose, if that makes sense. Definitely not a stuffy nose, and not as if she was struggling or anything, but it did seem louder and harder. It didnít seem to be affecting her in any way noticeable that I could tell or that she seemed concerned about.

    Does this mean it could be the beginning of breathing problems coming sooner then later?

    Txs
    CC xxx
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    Hi cc yes it probably is but she should be assessed with a respiratory specialist and will probably be given what we call a nippy.it's a mask and machine which draws in air from the room and regulates a breathing pattern.rob was a bit stubborn to start with but gradually by using it at night he slept better and didn't wake up with a headache.I hope your friend is now reconciled to her condition and letting everyone in.it is very hard to accept the changes as rob was in denial for a while but with acceptance came a calm.lots of love as always.caroline xxxx

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    Forum Member Cookewitch's Avatar
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    My dad is told that his respiration is, although diminished, still normal but he breathes differently. Often through his mouth and I can always hear him. The slightest exertion and he's out of breath.

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    Thanks

    I did think it was part of mnd now. Interesting you mentioned headaches Caroline, my friend has them all the time, but she thought it was from antibiotics. Getting her to a respiratory therapist just going to be another hurdle met with resistance, although I don’t think when it comes to breathing she will have much choice.
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  5. #5
    Forum Member Frank's Avatar
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    Hi CC.
    The breathing you have described is the same as mine
    It's a big part of the bulbar side of mnd, unfortunately the soft tissue in the nose and throat area collapses with the lack of muscle strength.
    My nose feels permanently blocked, but if I pull slightly on my nostril, it clears.
    I use the nasal strips at home to keep my nose open.
    It stops me looking like a 'two year old', with my finger stuck up my nose
    It's ok most of the time, but does require thought when brushing teeth or trying to eat.
    You sort of have to plan when you put something in your mouth

    The morning headaches are down to a lack of oxygen and too much carbon dioxide in the lungs.
    As Caz has said, using a ventilator overnight gets rid of those.
    I used to think that the headaches were down to the opiates, but as soon as I used the ventilator, they disappeared.
    I'm afraid you need to get your friend to the respiratory team. It will really help her a lot.
    xx Frank
    'An eye for an eye', leaves the whole world blind.

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    Forum Member pete's Avatar
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    Hi CC,CW,Caz,Frank,

    Yes it all sounds very familiar, to a fellow sufferer the nose issue drives me nuts, but I have found the sudafed nasal spray helps, that's after trying several that did nothing at all. What is generally a good first indicator that the breathing is being affected in other ways obvious, is the need for pillows in bed and the inability to lay on your back flat on the bed,this is the first question I get asked at every respiritry check up so far I have been fortunate I guess that I can lay flat without any laboured breathing, just amazed it the states that the support isn't far better or is it the case CC , pat has not asked for it yet, There are several more reasons however that her breathing might have changed so she should get it checked out ASAP , the other thing that may help are inhalers ,I use ventolin daily as I developed asthma the late onset type, that's not bad but does make you wheezy on the odd day or two and the inhaler does work wonders in my case, anyway you all have a good day.

    Regards
    Pete
    All I need is a miracle

  7. #7
    Forum Member Terry's Avatar
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    Hi all;

    I have not tried pulling my nose yet, are you pulling my leg Frank and does it work for blocked ears etc.

    Your friend has so many typical Mnd signs, sorry Cc.

    If you have head aches when you wake up it is probably due to the lack of oxygen but head aches at other time are probably due to other things. Whilst your friends change of breathing is not a good sign, it does not always mean that she needs a breathing machine.

    I have been breathing sometimes rapidly through my nose for about a year now but my overnight oxygen levels are fine. So watch out for waking up with headaches and not being able to sleep on back lying flat.

    Happy Christmas, Terry

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    Thanks again!

    I know a respiratory evaluation is needed, (along with the entire multi-disciplinary team‘s support) but she doesn’t. Always the same existing problem... getting her to take the support that is needed when she won’t acknowledge this illness. I have given up trying, and respect and understand why she chooses to cope this way. It come down to one word ‘Hope’, for her she is unable to live without it.

    I’m just scared something bad is going to happen, and at that point she will be brought to the hospital where she will be told the truth, bluntly and insensitively my the medical staff. Sad to say, maybe that’s what’s needed, I don’t know…

    Thanks for all the much needed info, will suggest it all to her, and hope for the best.

    CCxxx
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    Hi CC,

    I'm aware she's convinced it;'s other than MND, that'll be a fence, not a hurdle.....to jump.
    You've an impossible task ahead of you, she'll need MND supportive things, not the "other"
    What does the great "quack" suggest about her latest symptoms, more Antibiotics?

    Ray

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    Yes Ray, that would be a correct assessment, and yes more antibiotics given
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