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To pee or not to pee...

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    To pee or not to pee...


    I'm new to MND and to be honest struggling.

    My legs are no longer working nor is my right arm. Something that really gets me is that some days I seem to spend all my time and energy transferring to on from chairs to the toilet.

    a catheter has been suggested - googled and it seems scary.

    I'd be grateful to hear your opinions, experiences pro and cons etc.

    many thanks


    Sorry you're struggling Jules - you wouldn't be human if MND didn't knock you for six and you're not long diagnosed, so don't be hard on yourself.

    Our lovely Hayls on here is a good source of info on catheters - having had a bad experience with a urinary catheter, she is in the process of getting a suprapubic catheter (maybe she got it already?) - hopefully she, or another Forum member, will give you the lowdown.

    Big hug to you.

    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


      Hiya Jules

      i have a urethra catheter and it’s helped me not have to worry about tinkling and District Nurses replace if any issues or every 3 months, they use a numbing gel for insertion and wasn’t painful at all, bladder spasms are very uncomfortable and can cause a bit of pain 🙄 and mine is very problematic as a kink in the wrong place can cause urgent feelings and can cause bypass problems but I love adventures and getting out so for me I’d rather have one than not, can’t wait to have a suprapubic catheter done, ask away xx


        Many years ago my friend was in Stoke Mandeville and one evening we took his mate on the ward for a beer. On the way back my friend and I were reliving ourselves against a wall when his mate a quadriplegic in a chair said he wanted to pee too. My friend wheeled him up to the wall and bending over opened the spigot on his catheter. Life is what you make it. x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


          Thanks heaps - helpful and reassuring 🙂


          • Yes, unfortunately life with MND is a huge challenge just to be alive. But the reward is worth it.

            I have to smile when hearing Prince William talking about mental health with fit young gals'n'guys.


              Are you in a wheelchair? if so, try shimmying to the edge of the seat and using a female silicon urinal with a extension tube that goes straight in the toilet. I know a few women who do that. Better than something invasive.