Consider this: With MND/ASL grown up people return to babies. We rely on others to wash, cloth, feed and move us around. We cannot form words and just make random noises. Folk comment on our sweet smile while wondering what we are thinking. When we get we get frustrated or upset no one knows why. Some of us even wear nappies and isn't a PEG just like a baby's bottle? Just a thought. ππππxx
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Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxx -
Too true Mathew 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. -
π€¨ I have late stage ALS and am totally dependent on others, but in no way have I returned to being a baby.Originally posted by matthew55 View Post
βDiagnosed 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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Somehow I just knew you would say something like that. ππππxxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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You know me so well. πππβDiagnosed 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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Well said Ellie and as you say you are in late stage of MND/ALS and are totally dependent on others.Inspirational and so glad you donβt compare yourself to being a baby.
Best wishes
MaryComment
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Yes I feel I have got to babywalker stage with my rollator, and my grandson is learning words as I lose them, so we both use a lot of gestures. Quite a challenge trying to read him a story, but worth the effort! Yes to hang on to our adult selves and dignity through all this 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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