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Thread: Living with a Ventilator

  1. #1
    Forum Member Calum's Avatar
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    Living with a Ventilator

    Just posted up this video on living with a ventilator - without using my ventilator !!

    https://youtu.be/V4lBzdNL-Rk

  2. #2
    Forum Member Barry52's Avatar
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    Great video Calum and well done without your ventilator. It must have been very difficult to breathe and speak but you seemed to have it under control. NHS in the UK should not even challenge our right to this equipment.

    Barry
    Iím going to do this even if it kills me!

  3. #3
    Forum Member Dvd's Avatar
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    Hi Calum ..very good video and glad ventilation has helped .. MND Northern Ireland launched a campaign a few months back asking MLA's to put their weight behind getting Ventilators for community .. it was called " Every Breath Counts " ..don't know where it is at to date but must make some enquires .. it certainly would be great to have ventilators out on community for those that require them ..
    Dvd

    IMG_20160802_215649.jpg

  4. #4
    Forum Member Terry's Avatar
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    Another great video Calum;

    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.

  5. #5
    Forum Member Calum's Avatar
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    Quote Originally Posted by Dvd View Post
    Hi Calum ..very good video and glad ventilation has helped .. MND Northern Ireland launched a campaign a few months back asking MLA's to put their weight behind getting Ventilators for community .. it was called " Every Breath Counts " ..don't know where it is at to date but must make some enquires .. it certainly would be great to have ventilators out on community for those that require them ..
    Dvd

    IMG_20160802_215649.jpg
    Hi Dvd - The ventilation postcode lottery appears to be a uk wide problem, even within Scotland there are wide regional variations. This is all very troubling particularly in light of the most recent research out of Australia showing that ventilation increases average life expectancy by 13 months - see link below:

    http://jnnp.bmj.com/content/early/20...np-2014-310055

    All the best

    Calum

  6. #6
    Forum Member Calum's Avatar
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    For anybody looking for a comfortable non-invasive feeling mask, I've been wearing the FX Bella Gray for the last few weeks and I'm finding it great:

    https://mysleep.resmed.com/GB/en/Sle...a-Gray/p/61569

    Calum
    Last edited by Calum; 13th August 2016 at 16:27.

  7. #7
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    Hi Calum
    I've been on overnight ventilation for nearly two months now and it has improved my life-no more headaches and feeling awful during the day. It's really bad that there's such variation in accessing ventilation. I would be really ill without it.

    Crystal x

  8. #8
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    Hiya,I am concerned that I
    I just can't get used to the ventilation masks(yes plural(!) as have nasal ,nose/ mouth ,complete facial one) I just dislike the feeling of suffocation that I get with the straps and face cover in general.
    Been told by my nippy nurse and palliative care nurse not to work myself up about it but I do have trouble breathing when I am put into my sling to be hoisted followed by when I first get into bed! I don't know what to do.......

  9. #9
    Forum Member Terry's Avatar
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    Hi Missmuffett;

    How long have you been trying to use a mask as most people find using one very hard. Maybe try for short periods during the day and try to build the time up for two hours. You can get different masks and (I think) Nasal pillows which don't cover your face.

    You could also just use it when being hoisted or try some drug to make you less panicky but I think trying it for short periods during the day time and/or nasal pillows.

    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.

  10. #10
    Forum Member Ellie's Avatar
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    Hi Miss M,

    Try short periods of daytime use as Terry said, to get used to the feeling. Using BiPAP will make your life more comfortable.

    Given you've tried nasal pillows, which have the least facial coverage, and still aren't comfortable wearing any, I wonder about taking a small dose of an anti-anxiety med before bed for a few nights? It's "mind over matter", which I know is easy for me to say Ask your nurse.

    I wear a Total Face Mask at night, which is very comfy but I'm not claustrophobic.

    Ellie x.
    ​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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