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Thread: Ventilation or no ventilation is there a choice?

  1. #1
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    Ventilation or no ventilation is there a choice?

    My dads MND has progressed and now he has had an overnight test it has been confirmed that he needs ventilation. He can be very sleepy and keeps asking for a pill to give him some umphf! They are comming on friday with the equipment for non invasive ventilation, I presume that there will be a discussion about why then? Has anyone got any thoughts or experiance of this? Dad looks to me to help him understand whats happening, he is having to deal with so much. Xx

  2. #2
    Forum Member Terry's Avatar
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    Hi Bibby,

    Venterlation should be the "pill" that gives him some umphf.

    He probably has low O2 levels and high CO2 levels, making him sleepy. He might also have early morning head aches that go after a while after getting up.

    He will find it hard to get on with at first so it may need to be worn for a couple of hours to start with but when he uses it all night it normally will give a great improvement in the day time.

    I am no expert as I don't use it yet.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

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    Forum Member JAN Q's Avatar
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    Hi Bibby,
    I have been trying the ventilator at home now for 3 months unfortunately I can't get on with it, I am still trying but can only tolerate it go 30 minutes max, and that doesn't happen very often. I find that I get claustrophobic with mask on and the worst downside is that it dries my mouth so much that I have problems swallowing immediately afterwards. I am trying but wish there was an answer, I use my nebulizer first to see if it helps. I also use a cough assist machine to help me remove the excess and stubborn mucus.
    I hope that you find the ventilator more successful than I have, I really do think it would help me.
    My condition is deteriorating, in the last couple of weeks I have started to have neck ache which I know isn't a good sign, just hope it doesn't creep up to fast.
    X JAN Q.

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    Forum Member Terry's Avatar
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    Hi Jan;

    I know you can get different type of machines and different masks or nassel pillows. Also I believe that you can get humidifiers for the ventilators as well. Hope you can get some good advice here and maybe then go back to your expert and get something that works for you.

    Neck aches and shoulder problems are common with Mnd, support it with a soft foam collar at times and maybe see your OT about more supportive options. It's worth talking to a physio perhaps at the hospice about stretches and advice.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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    Forum Member JAN Q's Avatar
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    Hi Terry,
    Thanks for your reply, my physio is coming in few days to see about collar support and to do some gentle exercises, I am waiting to go in to have peg fitted at stoke university hospital in their sleep and ventilation unit and they have mentioned humidifier for ventilator to me so hope several of these problems maybe sorted. Once again thanks for your reply the help and support is wonderful on here ,as I live on my own I always feel there is someone to talk to about our difficulties we have to deal with.
    Xx Jan Q.

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    Forum Member Ellie's Avatar
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    Hi Jan,

    The humidifier will make a big difference to your dry mouth. Frankly, I don't know why they aren't automatically supplied with BiPAPs if a face mask is being used!
    There are many types of masks Jan, please try and persevere in finding one that suits. It's just that BiPAP use can really improve one's quality of life. Terry mentioned nasal pillows, if you're suitable for these, they aren't claustrophobic (I'm a mouth-breather now so can't use them)

    There is a Hybrid Nasal Pillow/Mouth mask, which might not be claustrophobic, here's the link:-

    http://www.eu-pap.co.uk/hybrid-full-face-mask.html

    Your respiratory technician or MND nurse should be able to give you a comfy mask, you may have to be assertive

    I use a total face mask, which is really comfy. The full face mask caused marks on the bridge of my nose, even w/ dressings!

    Re your neck: when waiting to see the physio, if your neck gets sore, rest it back against a headrest or into an armchair and use a heat pack to ease pain.

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

  7. #7
    Forum Member Ellie's Avatar
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    Yes indeed Bibby, it's dad's choice as to whether or not he gets a BiPAP/NIV. But the benefits of using one and drawbacks of not having one should be clearly explained to him, so he can make an informed decision.
    ​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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    Forum Member JAN Q's Avatar
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    Thanks Ellie,
    I too am mouth breather so would the mask you showed not be suitable? It looks similar to one the respiratory nurse showed me and I thought it would be more suitable but they didn't have one my size.
    I hope that I can get something to help me soon as I am getting tired every day now and find it necessary to have an afternoon nap, which I have not done before. Thanks for the advice.
    Xx Jan Q.

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    Forum Member Ellie's Avatar
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    It should be suitable for you Jan, as it covers your mouth. I'm not claustrophobic, but would imagine it to feel "less enclosed" than the full face mask.

    Push for a correct sized one Jan and try it (and, don't feel bad if it doesn't work out!) I'm sorry to say that it's mostly by being pushy & persistent that you get what you need

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

  10. #10
    Forum Member Nettie B's Avatar
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    Ventilation problems

    Jan.
    Trevor had a lot of drooling from the start which was never successfully addressed so he couldn't manage a full mask of any sort. The saliva collected in the mask as you can imagine.
    He got on much better with a nasal mask. It fitted snugly just around his nose. We needed to adjust the straps so it fitted really well.
    He also had a humidifier which seemed to improve things.
    I hope this helps you.
    X Nettie


    Quote Originally Posted by Ellie View Post
    It should be suitable for you Jan, as it covers your mouth. I'm not claustrophobic, but would imagine it to feel "less enclosed" than the full face mask.

    Push for a correct sized one Jan and try it (and, don't feel bad if it doesn't work out!) I'm sorry to say that it's mostly by being pushy & persistent that you get what you need

    Good luck,
    Ellie x.

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