Falling asleep just a couple of hours after getting up is spoiling my day so I am man enough to admit my mistake and resume NIV. Sadly it's too late to do from home so I'm going back to delightful Whythenshaw Hospital tomorrow.. Wish me luck. ๐๐xx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐ค๐๐ค๐xx -
Hope they can find a happy medium between your wants and your needs. xxโDiagnosed 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 do indeed wish you all the best. How long do you expect to be inComment
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Three days hopefully but I will be updating live as I have time to pack this time. ๐xBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐ค๐๐ค๐xxComment
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Ok be careful. Be calm and let us know how you're doing ๐when i can think of something profound i will update this.Comment
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All the best Matthew. I have everything that I can, crossed that it works out this time .๐ค๐ค๐คHugs to you and well done for trying it again xxxComment
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Yes Matt hope goes better this timeComment
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All the best, Matthew. Hope it goes well this time 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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Good luck Matthew xx I hope that it is a successful visit. Having just had a monitor on my finger for the last two nights I think I will be joining you with a NIV quite soon.
Sarah xComment
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Good luck Matthew and I hope they can make it easier for you.Iโm going to do this even if it kills me!Comment
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Good luck Matt!
Avoid the cheese-grater doc?!
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Graham if I came out of the beauty salon looking like that I'd certainly have something to say and would definitely want my money back. Id also like to point out that hair dryer looks very dangerous. ๐when i can think of something profound i will update this.Comment
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Good luck Mathew and hope that Wythenshaw look after you well. 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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Sorry to hear that Sarah but, if you need one, you will feel its benefits. xxOriginally posted by slp View Post
โDiagnosed 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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A belated good wishes to you Matt, hope it's all going well....Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.
Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.pngComment
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