I can, where is everyone? ππ³π€πxx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
ππ»I'm here buddyπ€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 -
Me tooIt's all funnyComment
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We're like rent-a-mob you can rely on us to turn upππInitial 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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I'm here too ! Xxππ€β€Comment
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ππ»another mob member Deb 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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Hi Matthew,
having a lazy day
Just reading, tv and not been out.Grandchildren( twins) arriving after school and staying for dinner joined by their other 2 siblings.
I have some days where I want to go out or see friends but need quiet days too.
Hope your day is going ok.
Best wishes
Mary
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I'm not here πππ
Been busy; nurse came twice today, because I'm worth it π No, she put a dressing on my Gruffalo foot, then returned with more. xxβDiagnosed 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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Not painful at all Deb OT & Physio were here this week and asked the nurse to take a look at my feet, just in case, and she brought some nice foam dressings. xxβDiagnosed 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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Hello all, I had the MND nurse today for a catch up. All sorts of things arranged including talk about NIV and a DNR arrangement
. On the bright side a friend turned up with a delicious strawberry pavlova t help with my calorie intake! 
Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.Comment
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A day of two halves Rosemary... ππOriginally posted by Rosemary6NT View PostI had the MND nurse today for a catch up. All sorts of things arranged including talk about NIV and a DNR arrangement. On the bright side a friend turned up with a delicious strawberry pavlova t help with my calorie intake!
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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Glad that your foot isnβt painful and that youβre nurse is looking after it xxOriginally posted by Ellie View PostALS 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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Sorry to hear about your foot Ellie xxComment
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In hospital - planned visit for follow up sleep study and adjustments to ventilator. Lots of other things addressed too and fantastic that my wife (carer!) has been able to stay too. A bit like camping for her, but so helpful now Iβm getting so helpless. Home tomorrowDiagnosed October 2020 - See my blog at https://www.myneurodiary.comComment
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