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Thread: Living with a Ventilator

  1. #21
    Forum Member nunhead_man's Avatar
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    Hi Dina

    No, I am afraid that was properly my fault - probably a man thing, putting up with a bit of pain and discomfort until my wife pointed out that what I think is a bit of a growth on the side of my nose has had split open and was bleeding!

    I have had one or 2 skin tags removed in the past - as I used to cycle a lot, come rain, come shine, I have always been on the lookout for bits of growths that might be cancerous.

    I am now talking to St Thomas is about trying to sort this out.
    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

  2. #22
    Forum Member Gillette's Avatar
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    Quote Originally Posted by nunhead_man View Post
    Hi Dina

    No, I am afraid that was properly my fault - probably a man thing, putting up with a bit of pain and discomfort until my wife pointed out that what I think is a bit of a growth on the side of my nose has had split open and was bleeding!
    ...
    I am now talking to St Thomas is about trying to sort this out.
    Hi Andy

    Itís good to hear you are being sensible. With MND being stoic is not a good option - it tends to come back and bite you on the bottom!
    Dina

    Trying to keep positive, but not always managing.

  3. #23
    Forum Member Ellie's Avatar
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    Andy, how macho are you

    There are lots of full face masks out there, so I'm sure there's one that won's cause you skin trauma.

    My one, for example, has different settings at forehead level allowing adjustments as to how the mask sits on the bridge of the nose itself (Joyce Gel Full Face)

    I'm sure (I hope...) St Thomas's will find you a mask so you won't look as if you've been in the boxing ring!

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

  4. #24
    Forum Member nunhead_man's Avatar
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    Hi Ellie,

    Thank you for calling me macho - I will pass that on to the family and see what they think!

    And Dina - I do not think the family think I am stoic either, since I occasionally throw my toys out of the pram about this bloody disease!

    I now have an answer to whether I need to wear the mask when I am doing my overnight test as there was a missing letter which arrived in the post today with apologies, saying it ought to be the packet with the equipment.

    I am waiting to hear if I can pop in and find a different mask
    Last edited by nunhead_man; 13th November 2019 at 13:28. Reason: Dina name change - voice dictation smacked
    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

  5. #25
    Forum Member Gillette's Avatar
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    Quote Originally Posted by nunhead_man View Post
    And Dinah - I do not think the family think I am stoic either, since I occasionally throw my toys out of the pram about this bloody disease!
    And Andy, my toys have not just been thrown out of my pram but directly at *you* as you have scored a direct hit on my Achilles heel. I am unbelievably touchy about people getting my name wrong. (Iím joking this time but beware...)
    Dina

    Trying to keep positive, but not always managing.

  6. #26
    Forum Member Ellie's Avatar
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    When I saw that "h", I thought, Oh Oh....
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #27
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    Hi everyone, just need a bit of help. I am not using a nippy yet, but I notice when I wake up or try and have a nap. I get a jerk reaction from my chest, it can happen a few times. I mentioned this to my nurse and she said it was nothing. Does anyone have this?
    Sheila

  8. #28
    Forum Member Gillette's Avatar
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    Hi Sheila,

    Iím afraid I donít understand what you mean by Ďjerkí.

    The Nippy is used when your chest muscles have lost some of their strength and your lungs are no longer able to expel enough carbon dioxide. The ventilator is used overnight and it helps your lungs to do their work. It simply uses the air in the room, not an oxygen supply. It takes several hours to reach the point where it reduces the CO2 levels which is why it is used overnight..
    Dina

    Trying to keep positive, but not always managing.

  9. #29
    Forum Member Ellie's Avatar
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    Yes Sheila, could you please explain more so we can help you?

    Has it only recently started?

    Is it just chest muscles that jerk rather than a 'startle' type of reflex?

    And have you any breathlessness when it happens?

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

  10. #30
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    Hi Dina!
    Thanks for your reply! It only happens when I am lying down, a bit like a hiccup. Makes my body jump!! Sometimes my chest is hot and aching. I get up and it goes! Very strange. I went to the doctors with this hot chest and he thought it was reflux! so I got some medicine.

    Thanks for your help
    Sheila x

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