Plymouth a city? Large town maybe. πππ€πxx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Me - I had a fabulous sleep πππ
Special thoughts to those for whom sleep is a trial ππβDiagnosed 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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I'm sleeping well ...even with NIV all night nowπππ΄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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βDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
βComment
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Good morning you wonderful acheivers. You'll be surprised what you can do when you put your mind to it. Our brain is one of the few things we are allowed to keep. πππ€πxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Good morning all xComment
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Good morning you incredible people. As the English Bard said 'Whether 'tis nobler in the mind to suffer. The slings and arrows of outrageous fortune, Or to take arms against a sea of troubles, And by opposing end them?'Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Morning all. i am half in half out of the wide awake club lol. i was sleeping like a baby until we decided to hire a motorhome. the mattress is like sleeping on concrete. might sleep on the grass outside tonight as i am sure it would be more comfortable.Diagnosed May 2021 bulbar onset als.Comment
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In hospital recently I had to ask for an air mattress. I'm all bone. ππππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Oh shelly I remember caravan mattresses and camping beds that we thought would be great before setting off and by night 2 fancied booking into a hotel because we couldn't sleep.
Morning everyone terrible weather here. πwhen i can think of something profound i will update this.Comment
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denise i now know exactly what you mean. its our last night and i think i am going to book in a hotel tonight. Matthew i have heard great things about the air mattress and am looking forward to it lots.Diagnosed May 2021 bulbar onset als.Comment
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Good morning everybody. I wish I could out to panic-buy petrol but as I can't I'm going to panic-telly-watch instead. xxComment
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Morning all. 8am I got out of bed today which is later than most days. It was a better night that I had in my own bed. With my slippy sheets and grab rail each side it was much easier to turn over than in the holiday one. Iβm all showered and dressed.
Shelley I feel for you. Hard beds are hell. Good luck for a good nights sleep wherever you lay your head tonight.
Love Lynne xALS 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.Comment
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Ugh shelly21 I feel for you hun - here's to a decent night tonight π€π€
I have an alternating air mattress and love it, though it can be hit and miss whether you're given a good one or not.
Chilly night, chillier morning, beautiful day - thank goodness for electric blankets πππ€π€πβDiagnosed 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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Good morning good people. We are the Champions! Never forget it. ππ€ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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