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Holiday Advice Needed

Hi,

My brother is getting married in France in August and I’ve got a specialist travel agent sorting it all out for me. However, he’s having problems finding appropriate care, so I’ve suggested to him that it might be easier to arrange if he just sorts carers to get me in and out of bed, showered, dressed etc.

I was just wondering what anyone else does when they need to go to the loo? The reception is being held in a private house with no disabled facilities, and carers aren’t allowed to lift anyway, so even if they were around all day they couldn’t help me onto the loo. At home I have hand grabs in strategic places so I can transfer myself to the loo. If I go out at home I use a pad, but in France I could be out for 9-10 hours so I’d need to change a pad anyway while I’m out. I don’t use a catheter. I’m travelling on my own with my two sons (11 & 14).

Any advice gratefully received.

Heather

Heather,

lt is difficult for people who are not ‘disabled’ to understand our needs. Even for wheelchair users - you often get the comment -’’ why don’t you get out of the chair while we get it up these steps’’- as if you really do not need to be in it. Or ‘we have a downstairs loo’ - but of course it is so small you can’t get in with a w/chair or rollator and there is nothing to grab to get up or down - except the wash-basin which you nearly pull off the wall.

lts a case of ‘a day in my shoes’.

l lost control of my bladder and bowels at the begining of my PPMS story - 33yrs ago. And for years l used pads - and took awful drugs to stop me weeing - that made me feel so bad. Then l had the SPC - and that changed my life altogether. l can still get about with my rollator - just around the house and part of the garden. And l have frames around the loo to help me. Stairlift to get upstairs etc. So far l am able to cope independently - lf my bowels get any worse - or my mobility - l shall certainly have a colostomy. No way would l want to have carers help me with this most personal need. l have told my daughter that this is what l shall do. She was very relieved.

Do look into having a SPC - it will make such a difference to your day to day care. l know Poll has found hers so beneficial. Message me if you need any advice. But not to have to wear pads all day and night is a dream come true. l remember night after night l sat on the loo - to frightened to get into bed as l knew l would wet it. l use to refer to myself as ‘Squelch’ to my friends to make a bit of fun and lighten the problem.

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Hi, yeh my spc is brilliant. But an operation is involved to fit it. It is so easy when going out.

I take a coke bottle with me and can empty my bag into it discreetly.

You may be able to have a urethral catheter fitted in a time for your trip away. District nurses can fit these in your home.

Sorry, dunno what else to suggest. Maybe speak to continence service, eh?

Pollx

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