How do you all manage with toilets?

[AnnJac]

Hi Everyone. I am new to this and still waiting a formal diagnosis but am at the stage of no longer being able to weight bear and arms and hands starting to deteriorate. Speech is fine but coughing, sneezing amd nose blowing not what it was.

How do people with similar lack of mobility as me manage toiletting at home and out of the home. I am currently using a transfer board to get onto a commode - won't work kn a toilet. This is getting harder and I am starting to need help. And at night my bare bum often gets stuck on the board despite using talc to help. I am now having to ask hubby to help me in the middle of the night.

And what do you do when you go out? I can't get on to a disabled, or any, toilet. We are going to see family tomorrow and are taking our commode to push into the disabled toilet in the pub! But can't always do this. And this is our first outing since my mobility has got totally non existent.

Do you wear incontinence underwear? Or am I missing a simple solution?

[Gillette]

Hi Annjac,

I would suggest that you ask your GP for a referral to the Occupational Therapist and the Incontinence Team, for advice and assistance.

[Terry]

Hi Anne,

It's easier for me as I have a sticky out bit. Some women manage with a shewee but.

If you still have strength in your legs you could use some standing turning device, they have a platform and you can hold on.

There are special disabled loo's that have more space and some have hoists etc, it's good to have a look at them before you need them and see if you can work out a plan.

Pads or different types of catheters are possibilities and can give a lot more freedom.

Your doctor must be feeling quite sorry for you so talk things over with them. They are probably your best way of getting things until you have some diagnosis.

You probably could get referred to a local hospice, they would have many connections and help you to live life better.

Love Terry

[stev50]

Hi Annjac,
Sorry to hear you are feeling onset symptoms and waiting for diagnosis. From my experience as a carer of my wife "D ,s" travel and movement is difficult when it comes to toileting. Not being able to weight bear yourself, as you point out about needing your hubby to help, emphasises this. What is important is that the ones who care for you are safe in what they do for you, keep them safe. Don't be frightened to use continence products. See Gillettes comment below, I think I now have "D" on the right product thanks to the OC,s now called "Continence Team" for her condition status
regards Steve

[Jude11]

Hi Ann
I am the same, ok at home with help but going out difficult as can't use disabled toilets and very few with hoists, actually haven't found one yet. Try a shewee, I can't get on with it but a lot of people can and does make life easier. You guys are lucky you can stick it in a bottle!! Very jealous.

Judy xx

[Lynne K]

Hi Terry and Ann.
Terry, me and my husband every time we go out try to find a good disabled loo. He's been making a list of good ones on his mobile phone. He adds bits of info ie poor access or too small to turn a wheelchair around in them. The later of very common. He takes me in forwards and goes out as I'm still independent in toileting. But how do I lock the door? If he takes me in backwards so I can lock the door, but how then do I get to the loo? He's worked out a must do solution. He pushes me in and then lifts up the wheels back and front independently of course and drags the chair around until it is sideways on and close to the door. I can then lock the door. Getting out of the chair and to the loo takes various amounts of effort and it's easiness depends on the available space and if adequate grab rails. Improvisation is usually required.

One time I had to drag the wheelchair with me towards the loo for stability. At other times I've grabbed sinks, dryers and loo roll holders. I put both my hands on the wall when there's nothing else to do, and so tentively walk the walls.

I've had a sheewee for many years, since I hill walked but I never perfected using it. I'm going to practice with it before my showers in the morning. It would save the difficulties getting up when loos are too low. There's plenty of them.

Ann, I hope that your trip out with family went well and that there was a good disabled loo available. Terry's idea of a sheewee is great, but it needs to be practiced with beforehand. You wouldn't want leaks around the edges of it. I would hate to wear continence pads, but as a short term measure they may be acceptable. I think in the long term I'd opt for a supra pubic catheter (tube comes out of your abdomen, similar to a stoma for poo) . I've had regular catheters several times when in hospital for operations and they are a real nuisance. I wouldn't have one long term.

I look forward to hearing your outing report Ann Lynne x