IMG_20220119_135339.jpg pretty sexy init! πβ€οΈππxx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Smashing Mathew xxALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes. -
Thanks Matthew ππ
Are the sides of the support rigid?
Hope Dolly the π was mutton before you sat on her. 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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I knocked her out before sitting down. It's the same rigidity all round. ππ§ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Did u get from orthotics?Comment
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My physiotherapist supplied itBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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This gallery has 1 photos.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.Comment
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^ Those are my new toys - the carbon fibre ankle braces I picked up from Orthotics on Tuesday.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.Comment
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WheelsOfSteel they look serious! No bovver with them on πDiagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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Anyone of similar vintage to me (born in 1965) may remember the then-named Spastics Society (Now Scope) charity collection boxes that used to be outside shops that were a statue of a boy wearing leg braces.
I feel like that kid when I wear them (Run Forrest, Run!)
They don't quite give me the speed of a paralympic running blade, but it's a start.
Hope we all find the right kit to hold up our various wobbly bits.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.Comment
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WheelsOfSteel Cool Eddie, do they cause any stress or strain on your shins? 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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Hi Ellie , I am getting no problems in my shins at all - although I have only had them for 3 days. Those top straps are very comfy.
They are to support my "dropped feet" and hold my foot up to stop me tripping over them
They work great!
Only observation I have is that if I walk on a surface that slopes sideways - then the whole brace leans over and drags my knee outwards.
Easily cured by avoiding sloping surfaces.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.Comment
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Look great WheelsOfSteel glad they help. Who organised them for you? π€Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.ββββββComment
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LindaB My Neuro Consultant referred me to Orthotics.
A floppy ankle and dropping foot was my first symptom (ahh, those were the days).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.Comment
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WheelsOfSteel my 1st symptoms too...now both ...yeah the good old daysππ€£πInitial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.ββββββComment
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