Marmite...love it or hate it π
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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.ββββββ -
Morning everyone As a child l liked butter - too much - used to eat it raw, until it made me violently sick. It joined the chocolate rolls and the rest of the midnight-feast eaten by torchlight under the bed-clothes. Since then haven't been able to stomach butter xxComment
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Gordan1111 midnight feasts....I'm glad I'm not the only one remembers this from childhood. Ahhh the innocenceπInitial 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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Spare a thought for those of us further down the path.
Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Oh yeah midnight feasts. Wasnt this enid blyton and them all meeting up in the dormitory.
Me and my neighbour used to talk out the windows when we should have been in bed and used to use our dressing gown ties to swing chocolate and biscuits to each other. I haven't shared this with my kids.
No goldilocks πwhen i can think of something profound i will update this.Comment
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OK, Lady G, I am well and truly a late entrant today, but I'M HERE!! ππOriginally posted by denise View Post
Self assessment tax deadline here is 31 October and I'm lending a hand, or rather, an eye or two. xx
βDiagnosed 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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Gordan1111 Ah, the good old days of midnight feasts when friends or cousins stayed over - waking up with smushed crisps in my hair and melted chocolate caked on my face, and a mad rush to get rid of the evidence πππβDiagnosed 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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Sneaking things out of the larder thinking my mum wouldnβt notice, giggling, torches 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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Morning all
For some reason, I could not sleep after 4 am so got up and got myself into the shower. Things seem so much harder to do first thing in the morning so I usually shower in the afternoon.
The support nurse coming at ten and I had an OT and a physio here yesterday plus a speech therapist tomorrow.
Busy week.It's all funnyComment
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Good morning matelotes (the last t is silent) sailing with me on the treacherous ocean of life. Luckily we have plenty of lifeboats available in the wonderful crew from previous trips. Stay Strong. Stay Sane. πππ€πxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Morning guys. Pont Aven ferry is just about the smallest boat you'll get me in Matthew. π€π₯°ππ€when i can think of something profound i will update this.Comment
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Boats are OK until you put them on waterIt's all funnyComment
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This is very true. Give me a land boat any day. π€£when i can think of something profound i will update this.Comment
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Landlubbers ππ€ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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