Originally posted by Ellie
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It didn't strike me as the best way to do an assessment. My appointment was originally to go to the hospital, but they phoned me and changed it to a zoom call.
Hi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring. -
Great idea Ellie feed them to the fish. Makes us sound like gangsters. Concrete boots as well. π€£when i can think of something profound i will update this.Comment
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denise I guess you could use the Welland Canal to get past Niagara Falls. Itβs a less scenic route, but I guess that doesnβt matter on a submarine. π€·π»ββοΈ
WheelsOfSteel I had to do a zoom call to talk to the RT about breathing issues as my transportation fell through. I canβt imagine a swallowing assessment going any better. Good luck with it.Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.Comment
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IMHO, a swallowing assessment needs to be hands on (in-person) - if you have any swallowing issues Eddie, I'd def ask for a proper assessment, watching you eat various foods is too subjective.Originally posted by WheelsOfSteel View Post
This 'Covid excuse' for video calls is wearing thin - they're suiting themselves, me thinks... 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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Morning chicklets. A windy, dull morning here. Cats are all asleep. Flea treatment done so I'm not there favourite person.
Imagine a submarine going along a canal π€£
Would like to know what they would do if someone couldn't participate in a zoomy because they didn't have the technology. They would have to see them in person. Gosh how scary that would be. π€when i can think of something profound i will update this.Comment
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Morning team xxFoxes Never Quit πComment
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Late good morning from me. XDiagnosed May 2021 bulbar onset als.Comment
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And an even later Good 'Morning' from me ππ
I wonder if the submarine will surface carrying several πππ - or do North American canals not serve as urban tips? πβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
βComment
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I can imagine things being rural and nicer in Canada. I might be wrong? Need to get the sub out for a run and find out.
Morning everyone xxxwhen i can think of something profound i will update this.Comment
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Morning Munchkins!
I'm delighted to report I am back on form after yesterday's blip.
Wishing you all the best day possible whatever our circumstances. β€οΈHi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring.Comment
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Morning everyone, cool one here 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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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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A late early bird here. We watched the football last night. 4.0 a really great match. πwhen i can think of something profound i will update this.Comment
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Absolutely denise fingers crossed we can go all the wayβ¦.Elsie: this is a football thing so will explain later ππFoxes Never Quit πComment
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I'm as far from an early bird as you can get so never post on here but have a little nose at all the banter which makes me laugh.
Looked this morning and no post, my first thought was I wonder what Denise has been up to as she's normally up with the birds!
We watched the football too, it was a really good gameComment
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