Lol. Virgin broadband ππππxx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
π€£π€£π€£π€£πβDiagnosed 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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Good morning
I am still full of steak and ale pie from last night.It's all funnyComment
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Was this steak and ale pie or steak pie with pour over ale? π€£
Morning everyone. Horrible start here.when i can think of something profound i will update this.Comment
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Morning all.
Keno steak and ale pie is one of our favourites when we eat out at a pub. You were up early. Did the pie keep you awake? 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.Comment
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Good morning everybody. I miss eating more than anything. Mind over matter or Madness knocks. π‘πππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Morning....steak & ale pie....yumπππ»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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Yeah I'm all for that. Have to have a favourite pie party πwhen i can think of something profound i will update this.Comment
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denise
Hi Denise ..you mentioned you are having a horrible start today? Whatβs wrong?
Best wishes
Mary xxComment
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Good day all xxComment
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Hi Mary
I dont know sometimes things are easy and some days I struggle. Stephen is very keen to smoke even with his nicotine patches and he will go on and on and keep trying to pursued me to roll him a fag. I get up when he wants to get up. I just do everything but some days I just would like to have my life back just for a while. I know it sounds selfish but it can get to me. I cant reason with him. Hes a bit like a spoilt child. He will have a dementia assessment in January even though I brought it up rather a long time ago. I don't know how to deal with it. It just gets me down.
sorry guys ππ€π₯°when i can think of something profound i will update this.Comment
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I'd give my eye teeth to smoke again. What's it going to do? Kill me? ποΈπ€£ππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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denise supporting someone with a diagnosis of dementia is never easy - you need regular breaks or you'll become unwell. Sorry it's so tough ππInitial 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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