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  • Olivia H
    replied
    Keep positive, someone is always here x

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  • Heather R
    replied
    shelly21 nice to hear from you again, so glad the hospice was some help. Go at your speed with getting used to NIV, and hope you find it useful and comforting as I do x

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  • TinyLady
    replied
    Good to see you back, although I've not been here much either xx

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  • Lcfcno1fan
    replied
    Welcome back Shelly 😊😊😊

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  • Claireflo
    replied
    Welcome back shelly21, it's good to hear some positive news about the support from the hospice and the frame. I hope it goes well with the NIV and you find it useful.
    Claire

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  • Ellie
    replied
    Welcome back lovely lady πŸ€—πŸ˜˜

    Originally posted by shelly21 View Post
    I have had great support from the hospice. They are now going to be our go between with some of the departments.
    Oh Shelly, that is music to my ears πŸ‘πŸ‘

    Re NIV: a comfortable mask is very important so, if you don't get on well with the first mask you're given, there are other types available. xx

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  • GillB
    replied
    Welcome back shelly21

    We missed you and your partner is right about how this forum helps.

    Glad the hospice is helping and getting you the help you need. Sounds like your OT isn't that clued up. It is really pot luck as some are great. x

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  • Maria C
    replied
    Glad to see you back Shelly.

    Your comment β€œIf only my ot or physio would've suggested it” really resonated with me. I’ve found more useful suggestions here than I’ve ever gotten from the so called professionals I’m involved with. This is a great group of people.

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  • Karen62
    replied
    Lovely to see you back shelly21 xx

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  • PeterPan
    replied
    Welcome back Shelly. I found NIV very hard to get used to but now the gentle, rhythmic breathing is a great comfort and now sends me to sleep (night and day!)

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  • denise
    replied
    Glad you're back shelly.

    Xxx

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  • Hope
    replied
    Welcome back shelly21! It is so nice to see you back here! So pleased things seem to be improving for you and good luck with the NIV. x

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  • shelly21
    started a topic I'm back

    I'm back

    Hi everyone. My partner encouraged me back on the forum because he says that if it wasn't for the forum members we would be lost.

    I have had great support from the hospice. They are now going to be our go between with some of the departments.

    The anti anxiety meds are so helpful. The good news is I saw a Facebook video of a man with mnd using a frame with wheels on front. My friend got me one and I'm out of my wheelchair in the house and using my frame. If only my ot or physio would've suggested it.

    I've got a to start niv as nighttime sats falling. I was upset but I also know what good it can bring.

    I will take the tips from you guys re breaking niv in gently.

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