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βDiagnosed 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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I get a banging headache if I get too dehydrated. Nature's alarm system. π€β°π€£β€οΈxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Very much agree, always notice my balance is worse if I haven't drank much water/fruit juice/green tea too nowπComment
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I heard of someone who had warm water down their PEG, but I find cold water makes me feel I am having a refreshing cold drink (down my throat), lovely 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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I can't have very cold water down my tube as it's much more likely to reflux up - too much of an aspiration risk for me.
Glad your cold 'drink' stays in your stomach Heather R 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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I've always used cooled boiled water. Am I ok using warmed tap water? π€when i can think of something profound i will update this.Comment
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My dietician said you don't have to worry about boiled water at home, only in hospital where there are so many dangerousus germs around 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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Warmed tap water being cold tap water (mains) with added boiled water/microwaved for a few secs or tap water from the hot tap? Only safe drinking water should be put through the tube.Originally posted by denise View Post
Mains water is generally OK, if it's very hard water the feeding tube and plastics may suffer over time, so maybe use a filter jug (I do as I live in a hard water area) xx
βDiagnosed 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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Are we more vulnerable with MND? All my life I have drunk out of the tap. It's all going to the same place, and bottled water is a rip off. ππ¦ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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π€ No, residential mains tap water is fine to go through a tube. I filter mine as it's that hard you could walk on it 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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So true about staying hydrated. When we are at home I sip water all day.
I don't drink enough, if at all , when we go out because of the difficulty in using the loo and I often feel weaker and tired. XxComment
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I told you before, ice cubes in Pimms don't count ππππOriginally posted by Deb View Post
βDiagnosed 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 deb. I agree. Ellie is right. π€when i can think of something profound i will update this.Comment
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Oh no! that's where I've been going wrong ! ππ€πΉπxxOriginally posted by Ellie View PostComment
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