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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Met a gorgeous man today
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Of course - you're famous!
Probably recognised you from all your press coverageHi, 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.
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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!
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Originally posted by TinyLady View PostMaybe I can become an "influencer"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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Originally posted by Ellie View Post
Ooh, yes - then you'll be sent top of the range wheelchairs, mattresses, hoists etc and won't need an OT ππ
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.
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Originally posted by Tabbycat View PostNot sure I can endorse not needing an OT!!
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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Originally posted by Ellie View Post
Present company excluded π
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₯΄)Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive πΊ.
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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!
- Likes 1
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