Just a big hello to Onein300 - so lovely to meet you today. Was great to bump into someone from here and he instantly recognised me as TinyLady π€£
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Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive! -
Of course - you're famous!
Probably recognised you from all your press coverage
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. -
TinyLady you'll have to get a stack of signed photos ready for you're fan club!Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive πΊ.Comment
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Will you use the page 3 version with nothing but the boa? πwhen i can think of something profound i will update this.Comment
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Love the idea of my fan photos π€£ especially just the feather boa one. I'll have to keep working on increasing my fan base. Maybe I can become an "influencer" π€£Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!Comment
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Ooh, yes - then you'll be sent top of the range wheelchairs, mattresses, hoists etc and won't need an OT ππOriginally posted by TinyLady 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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And longer boas. π€£when i can think of something profound i will update this.Comment
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Not sure I can endorse not needing an OT!! πOriginally posted by Ellie View Post
Mind you after some of the shocking stories I've read on here some would be better off without one!Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive πΊ.Comment
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Present company excluded πOriginally posted by Tabbycat View Post
I was thanking my OT last week, saying how much I appreciate her improving my situation and she teared up - when she composed herself, she said, "that's why I do it, thank you so much for saying that" (which set me off π₯΄)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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π πOriginally posted by Ellie View PostStarted limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive πΊ.Comment
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Onein300 - it was incredible. I learnt so much and came away exhausted but inspired. But so good to meet other people with MND. I don't do that enough!
Hope you got home safely and you weren't too exhausted xDiagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!Comment
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