To pee or not to pee...

[Jules]

Hi

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

jules

[Ellie]

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.

[Hayls]

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

[matthew55]

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

[Jules]

Thanks heaps - helpful and reassuring 🙂

[Banned]

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.

[Guest]

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.