Using disabled toilets.

[Jacquij]

For the second time in a week, I had great difficulty in standing up from a disabled toilet. I think the toilet did not seem as high as others and I also just did not have the energy or strength to get up, in my legs and arms. Has anyone got any tips apart from not going to the toilet, when I’m out.

[Graham]

Sadly, it is the nasty insidious way MND works. It gets more and more difficult. You need a friend to help for now, while you can still get out.

[Bowler]

I agree with Graham. In the early days of my wife’s mnd journey we took to driving from home down to southern Spain and we used to take a raised toilet seat in a bag that could be zipped closed ( not as bad as it sounds ). It did the job until she couldn’t manage that then I stepped in to help. At least she maintained her independence and dignity for a while longer

[Jacquij]

Hi Guys, thanks very much my OT has dropped of a raised toilet seat, so hopefully that will help, and I will have to make sure I have help on hand.

[Roy32178]

When this happened to me, my wife had a special toilet seat installed a week after.
It helped a bit. Still, you definitely need someone close to support you!

stay safe,
R

[Tess]

We got a raised frame thingy mabob from the OT for toileting in the flat, but with no use of his hands anymore, my partner can't use the actual frame to stand anyways and so still requires my assistance. So possibly a little pointless for us right now.
As long as you've got use of hands to help lift you up this will be a good shout.

[Betty sitbon]

Fritz has trouble getting off the higher toilet set as he is realllly tall. Being a carpenter w an engineers Ming he got 2by fours cut to size and used construction glue to raise the chair up . Works really well and he doesn’t have much strength in his arms or legs anymore

[Betty sitbon]

Mind not ming

[Ellie]

Betty sitbon You can Edit or Delete a post - click on the Edit tab on the base of the text box.

[Jacquij]

Part of the problem is when I am out and about, or visiting friends.

[Jo jo]

How do you manage when going out or visiting when needing the toilet

[Ellie]

I need full assistance for the loo so I try to keep my loo trips just to pee if out and about, but that means someone transferring me on and off a toilet. I bring my trusty raised loo seat with me visiting family or use disabled facilities if out out.

No room for embarrassment (quite literally) in many bathrooms and transfers can be more of a shove than a tango but needs must 😁

[Madge]

This is one of my bug bears... disabled toilets .... they are not suitable for my needs and I tend not to go out .... even Hospitals appointments I am avoiding because their disabled loos are not suitable !!!!

[Jacquij]

I have just had to get used it and get over being shy. Fortunately my friends have been a great help. Also I take my Sara Steady with me and use it in conjunction with a raised toilet seat. Thank god we have a wav van that it will fit in with me and my wheelchair. Also I have started to use the changing places toilets, but I am thinking I won’t be able to do this much longer and it will be hoisting that we will have to do. I keep thinking about also getting a catheter..........

[Mary C]

Hi Jacquij, I think some health professionals don't want to introduce catheters due to risk of infection. Might be different for us people with MND. It makes a trip out difficult doesn't it if you worry about using the loo in places away from home. Also it depends if you are anxious in case you need more than a pee !!My hubby and I discuss this but not at that stage just yet but only a matter of time. Also it could be tricky at home if need loo when husband is out! What are the changing places toilets?? Best wishes Mary