Getting used to nippy4 - 6 hours last night incl one alarm
Problem is horribly dry mouth. Is there humidifier?
Out of aces
Doug x
Problem is horribly dry mouth. Is there humidifier?
Out of aces
Doug x
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Diagnosed April 2017 -
I get dry mouth a lot and there are lots of products that help but I'm having NIV soon so other suggestions are welcome. Stay Strong 😁xBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx -
You've made great progress, Doug - fantastic news!
Yes, there is a humidifier (I couldn't sleep without one) If you don't have the water chamber, ask your resp team for it.
Here's the video:
Love Ellie.Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Fabulous Ellie!
Thanks!
Doug xDiagnosed April 2017Comment
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Glad you’re doing well with it Doug 🤗 xJanette xComment
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When it's my turn to need NIV, probably sooner than I'd like, I know that Louise is going to hate all this technology. I've always been the tech geek in our house.Each day is made easier with a bit of humour.Comment
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Gary, the NIVs are pre-set and (usually) locked, so it's just a matter of turning on the machine and putting on the mask.Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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By the time I put NIV, Cough assist and suction machine by my bed I won't be able to get in it 😁xBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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I have 6 things needing to be plugged in all night, every night to sleep. Good job we've night rate electricity!Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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That's a relief, Ellie. As my abilities desert me one by one, I do get a bit stressed about Louise having to take in so much. I've always absorbed info like a sponge, but Louise prefers to keep things simple.Originally posted by Ellie View PostEach day is made easier with a bit of humour.Comment
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That made me laugh, Matthew. It's a bit different from when we were young and came in from a night out and just crawled into bed.Originally posted by matthew55 View PostEach day is made easier with a bit of humour.Comment
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I think we might need some extra sockets in the bedroom.Originally posted by Ellie View PostEach day is made easier with a bit of humour.Comment
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I use a plug board.Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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When I had my garage converted to a bedroom I had 12 sockets installed and they’re all in use.Sporadic MND/ALS - Limb onset - Diagnosed May 2016
night time NIPPY, cough assist, PEG
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AndyB Blimey, hope you've night rate too 😯
The amount of power we use must add quite a bit to the bills, all the same...Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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