Morning everyone. Donβt want to disrupt this happy domestic nostalgia x
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Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning! -
Morning all πFoxes Never Quit πComment
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Morning π»βStarted limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive πΊ.Comment
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Good afternoon Loonies, oops typo, I meant Lovelies 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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Think you got it right first time πwhen i can think of something profound i will update this.Comment
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π€£π€£π€£ watch those typos Elsie! πStarted limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive πΊ.Comment
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Tofersen is in the news today as being being a new treatment for Als. Depends if it gets the go ahead here. Interesting results.
Morning everyone
Xxxwhen i can think of something profound i will update this.Comment
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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.Comment
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Enjoy your day MMG join you in shout out 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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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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Ellie what wonderful service. Derriford sent a machine for Stephen by taxi. I was impressed. Not that he used it.when i can think of something profound i will update this.Comment
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Ellie sounds nerve racking in the night, but reassuring that the phone number works even at midnight 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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Ellie that's great service and just goes to prove a spare one should always be issued, in case if emergency!Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive πΊ.Comment
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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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