Morning everyone. Donβt want to disrupt this happy domestic nostalgia x
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Morning all π
I'm off to visit my elderly Mum & Dad today. A lovely friend in the village has offered to take me.
Big shout out to lovely friends and supportive community π₯°Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive πΊ.
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Good afternoon Honeybunnies ππ
Rather damp morning here but brightening up now π
When my NIV machine was switched on last night, it showed an error message and froze, couldn't even power it off, which was the advice given in the user manual.
Hubby rang the number helpfully displayed on the machine to find a way to reset it and was told it couldn't be fixed easily so they'd have a new NIV to me in about an hour to an hour an a half. As this was just after midnight and I have a spare older model which just needed to be found π¬ we said it would do today so we didn't have to stay awake.
Lo & behold, the same technician who spoke to us after midnight, appeared this morning with a new machine, set it up and took away the offending machine with that error message she had never seen before - just my luck...
Anyhoo, we're all set ππβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Tabbycat Hope you had a lovely day with your parents - that time spent together is so precious, so huge shout out to your friend. xxβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Yes, great to have a 24/7 service but I guess it has to be that way.
Like plenty of other people, I can't sleep without ventilation and it's good to have a spare, particularly if one is NIV-dependent. xxβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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