Just to say the Hospital was horrified and embarrassed by what happened to me and have bent over backwards to fix things and make my return go right. I am looking forward to returning. πx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Well thatβs something. When are you going back. Asking so I know when to get the πͺ ready π
Thats my attempt at trying to lighten things up by the way. -
Two weeks time πxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Oh that's great to hear!! You must be so relieved by the reception you got today xβDiagnosed 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 admit I really was crying πxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Good to hear that you finally got some recognition Matthew. At the very least you may be improving the treatment of future MND patients. Not that I've got a vested interest or anything. πEach day is made easier with a bit of humour.Comment
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One thing brought home the madness that is Covoid.
My only companion in my ward (side room) was a lovely chap of 79 years and partially deaf. He was getting NIV for the first time like me and when they do it they wear full PPE including a filtered mask that makes their voice muffled. This poor chap couldn't hear them so he just said yes to everything. Can you see what I'm getting at? π πxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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