This year is the first time in 16 years I've no school returnees - 50/50 if it's woohoo or boohoo. π xx
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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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Oh Ellie sounds like cause for celebration....hope you feel it's woohoo.... no more school uniforms π«π«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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My daughter is already panicking about having to choose what to wear to Uni, think she'd prefer a uniform πOriginally posted by LindaB View Post
But yes, for me it is a celebration, she hadn't even started school when I was diagnosed.
Thanks Linda ππ
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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Ellie yes what an achievement seeing her through her school days. But is she now moving away? 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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Oh I remember when my daughter left and my son at the same time. It was so odd. An empty house. πwhen i can think of something profound i will update this.Comment
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Thankfully not, Heather! She doesn't want to go away, wants to stay with her horses, dog, mummy and daddy (in that order π) xxOriginally posted by Heather R View Post
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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Can't even imagine the psychological impact of that Ellie. What an amazing person (that's not said in a patronizing way I assure you) full of admiration. πππππOriginally posted by Ellie View PostInitial 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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What a compliment Ellie, that your daughter wants to stay. And nice for you too xxDiagnosed 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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So lovely Ellie that your daughter wants to be at home. Not having school age children is a big milestone π and you can be a very proud Mummy xxxComment
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Good morning you good people. Well 11 hours sleep in one and two hour segments, although the last couple are longer. The Z's drop me off, and the xylimelts drop off me within three hours but the effects last longer. I've never had so much fun as I do with MND/ASL. ππ€ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Morning Matt. Meant to say, l remember a Spurs game with Manchester United. Greaves, Gilzean played, Jennings in goal, Best and Bobby Charlton played for Manchester - I thinkComment
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Pat Jennings bought me a milkshake when I was seven and I promised to support his team as a thank you. ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Funny how these things treasured and remembered for ever xComment
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Good morning you fantastic people. My how time flies. ππ€ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Morning all.Comment
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