Announcement

Collapse
No announcement yet.

Refusal

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    It might take baby steps Denise - the seed has been planted, who knows what may happen over time x
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #17
      Of course this helps Broostine, great to hear all experiences and thoughts x

      Comment


        #18
        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 thinking

        Comment


          #19
          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.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #20
            What I don't know about feeding tubes isn't worth knowing. It's the only thing I'm good at these days! 😊x

            Comment


              #21
              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. 😉

              Comment

              Working...
              X