Well early doors a nurse notices my bed is completely soaking. I hadn't noticed. I ended up with a fresh bed and hospital pajamas. I have been on constant fluids and I was peeing a lot during the night but no one checked my bag until 6am. Good start ππππ€xx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Oh dear.Hope you get sorted and back home soon.
Best wishes
Mary -
Hope things progress better now Matthew xDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
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They are letting me back my Prozac so all forgiven ππππ€ xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Tell them you're doing research for CQC I guarantee no urine bag left unemptiedππOriginally posted by matthew55 View PostInitial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.ββββββComment
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It's not a bag you need, it's a bucket ππ
Good news re Prozac πβDiagnosed 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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Day three and I finally ask for an air mattress ππππ xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Good you are getting all the gear to keep you comfortable.
Best wishes
MaryComment
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Not like you to be shy and retiring π did you get one? xxOriginally posted by matthew55 View PostβDiagnosed 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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Yes and very quickly π€πππ xx
Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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With your pee problem you could have asked for a water bed
πwhen i can think of something profound i will update this.Comment
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I always forget but what's that stuff we have to use instead of oxygen?Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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If you mean what to we breathe in if using NIV, that is just room air - is that the context of your question, or do they want to give you oxygen? xxβDiagnosed 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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They want to give me oxygenBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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NO!! DO NOT LET THEM.
because your respiratory muscles are weak, how you process oxygen is inefficient and you will retain too much carbon dioxide., that is dangerous.
Sometimes, using a very low volume of O2 is just about OK provided it is used in conjunction with NIV, and your CO2 levels are constantly monitored.
If they saw your Sats were a bit low, maybe 93-94%, and suggest using oxygen to get you up to 99%, that is not how ALS respiratory failure is treated. NIV is the only 'treatment'. xxβDiagnosed 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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