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.
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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
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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.
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Betty sitbon You can Edit or Delete a post - click on the Edit tab on the base of the text box.Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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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 😁Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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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..........
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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
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