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    It took me a while

    I have been wearing medium pull up nappies from day one. Something made me order large and the difference is astonishing. Comfort is a warm, well fitted nappy! 👶🔥🌝🌈xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    #2
    I've noticed that size varies with different makes. Some can be a bit baggy and create leaks. Definitely a learning curve.
    😘
    when i can think of something profound i will update this.

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      #3
      I have a stoma for number 2s and getting a catheter on Monday so no nappies needed thankfully xx
      ALS 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


        #4
        Originally posted by Lynne K View Post
        I have a stoma for number 2s and getting a catheter on Monday so no nappies needed thankfully xx
        What sort of catheter are you having Lynne? That’s the next step for me 👍 xx
        Janette x

        Comment


          #5
          It’s a normal one, tube between legs up to bladder and bag on leg. Going to Wythenshaw next Wednesday to breathing team to discuss PEG and suprapubic catheter but if the normal catheter works and isn’t too uncomfortable I’ll stick with that xx
          ALS 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


            #6
            Oh right wasn’t sure which one to ask for, hope all goes well with the peg I had mine done at Wythenshawe they’re lovely ♥️ X
            Janette x

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              #7
              Nettie They catheter put in at home is an indwelling catheter. xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Thanks Ellie 👍 do I just ask the continence clinic for that? X Janette
                Janette x

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                  #9
                  Originally posted by Nettie View Post
                  Oh right wasn’t sure which one to ask for, hope all goes well with the peg I had mine done at Wythenshawe they’re lovely ♥️ X
                  How long after you saw the breathing team did you go in for your PEG? I’m hoping very soon xx
                  ALS 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


                    #10
                    Originally posted by Nettie View Post
                    ... do I just ask the continence clinic for that?
                    If you have an upcoming appointment at the clinic, I'm sure they'll have a chat with you about all options Janette, if you feel that a catheter would be most suitable for your setup/lifestyle, then push for that option, otherwise talk to your district nurse.

                    Good luck xx

                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Originally posted by Lynne K View Post

                      How long after you saw the breathing team did you go in for your PEG? I’m hoping very soon xx
                      I think it was a couple of weeks after but that was 2 years ago I’m not sure in the current climate, hope you get sorted soon 👍 xx
                      Janette x

                      Comment


                        #12
                        Originally posted by Nettie View Post

                        I think it was a couple of weeks after but that was 2 years ago I’m not sure in the current climate, hope you get sorted soon 👍 xx
                        Thanks xx
                        ALS 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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