It might take baby steps Denise - the seed has been planted, who knows what may happen over time x
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stephen has had a chest x-ray and ecg and his peg should go ahead in 2 weeks. its a bit nerve wracking especially as we thought he was going to have it done on wednesday but this was time for a chat about the procedure. have to say that didn't really help much infact i nearly changed my mind but stephen seemed ok about it. its like when i think we should go do something he comes up with the opposite - i need to change my way of thinkingwhen i can think of something profound i will update this.
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denise It's totally natural to be worried about what's expected of you in potentially having to look after Stephen's feeding tube, and all the feeding etc - it's all unknown to you and must be daunting.
Take a look through this site, hopefully it'll help and of course you can ask us anything: https://mytube.mymnd.org.uk/
Love Ellie.Diagnosed 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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It's the whole responsibility thing. It's daunting. It's scary. I try to come up with conversations on what we should think about and all I get is: I suppose so, if you want, whatever you think. Then when I agreed to him having the peg he revolted and now he's changed his mind and going ahead with it. I've told him at this rate I might run away. 😉when i can think of something profound i will update this.
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