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Thread: Non evasive ventilation

  1. #1
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    Non evasive ventilation

    My Mambwas diagnosed with bulbar at the end of November. She seems to be getting worse very quickly. We had an appointment yesterday and the consultant has arranged for Non Evasive Ventilation which is coming on Friday. Her breathing isnít good so hoping this will help. Any experience or advice about this would be fab. Thanks

  2. #2
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    That should say Ďmy Mam wasí - lol

  3. #3
    Forum Member Lynne K's Avatar
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    Hi Lesley. Sorry about your mum's diagnosis. Bulbar MND is horrid. If you need to talk to anybody the MNDA phone people are great. I don't know their Christmas work shedule but worth a call. They're details can be found on this site.

    I hope that your mum's non invasive ventilation helps her sufficiently.

    Take care, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  4. #4
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    Thanks Lynne, itís still all very new to us so might give them a call x (non invasive? Apologies for my daft error lol)

  5. #5
    Forum Member Ellie's Avatar
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    Hi Lesley,

    (It's called Non Invasive Ventilation, NIV, for which you'll see many references. Unfortunately the search function needs a minimum of 4 letters, but you can search for 'Nippy' and 'BiPAP' and find lots of info)

    Your mam should find using NIV helpful. The most popular brand is Nippy, which will be set up for her breathing needs, so it's a 'plug in & play' machine.

    Getting the mask right is key, so if she doesn't get on with the first mask, there are plenty more to try! Sometimes the machine settings need to be tweaked too, not by you you'll be happy to hear!

    Usually NIV is initially used overnight and later, during the day, if needed. But it can be strange getting used to it, so perhaps she can wear it watching her soaps on TV or other relaxing times, just for an hour or so.

    Many of us, including me, use it so there'll be plenty of help on the Forum for you both. And take a look at this website, maybe with your mam after you look at it? https://niv.mymnd.org.uk/

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

  6. #6
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    Ellie thank you so much. I have seen references to this but didnít know what they meant. We need next Friday to come quickly, she is so tired and breathless with headaches in the morning. x

  7. #7
    Forum Member Ellie's Avatar
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    Her headaches should go using the machine Lesley and it should boost her energy/appetite/resolve.

    Whilst waiting for Friday, if your mam doesn't have a profiling/hospital bed, she may find it better to sleep slightly propped up with a few pillows.

    If she doesn't have such a bed, it's worth asking her community nurse for one - yes, I know it's yet more 'stuff', but it's one good thing to have! (it makes my life easier, for sure)

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

  8. #8
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    Mam has just had a slight panic attack because she couldnít get her breath. Our normal breathing exercises together didnít work at first. She appears to have a blocked nose so was struggling to breathe through her nose. any suggestions for a blocked nose? Decongestant? Olbas oil? Vicks?

  9. #9
    Forum Member Ellie's Avatar
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    It's usually a combo of things to clear a blocked nose. I use saline spray from the pharmacy, rolled up kitchen roll (to get wet and dry snot out), a decongestant and a nebuliser.

    If I use Vicks or similar, it catches my breath and sets me coughing.

    If she has another panic attack, it's best to stay calm (hard though that is in the moment!), give your mam space, open a window to give a waft of air (calming) and sit her up if laying down.

    There is a 'Just in Case' kit available on prescription for panic attacks due to breathing, which contains meds to relax the person. If you want to discuss it with her GP, here is the info for the GP https://static.mndassociation.org/ap...et-for-gps.pdf

    Love Ellie.
    Last edited by Ellie; 29th December 2019 at 12:19.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #10
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    Thank you Ellie, I was hoping you would respond. Think I am going to rely on toys bit. She has calmed now so will try your nose tips.

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