Hi All,

Does anyone have the same difficulties as me?

I am a 29 year old lady with Quadriplegic Cerebral Palsy. I use a power-chair to get around as I unable to walk. I live independently with live-in carers as I’m unable to dress myself or feed myself etc. At home I use a hoist to go to the toilet or to go to bed etc as I have only limited weight-bearing through one leg the carers are unable to stand me up.

I like to go out for days shopping, to the theatre and on holiday and things but I can only do it with my parents, which is not really living independently. This is because my parents are the only ones who can and are prepared to stand me up and lift me on to the toilet when I’m out. Public Disabled toilets don’t have hoists so I can only go out with my carer for 2 or 3 hours in between me needing the toilet. My parents are in their 60s now and as they get older they are going to find it harder and eventually will be unable to take me to the toilet when I am out and they are not always going to be around. I am really worried when they have died I am either going to be confined to my house or have to go in a residential home, which wouldn’t suit me at all having live independently in my own bungalow.

I recently went to a disability exhibition and there was a demonstrator of different catheters and I told the demonstrator of my situation and she informed me about the Mitrofanoff Procedure (A stoma in your stomach that you catheterize through) and she thought this may benefit me. I have looked on the internet about the Mitrofanoff and it only says about people with Spina Bifda having it done. I think it will boost my quality of life if I could have the Mitrofanoff Procedure.

Has anyone else with Cerebral Palsy had this procedure done and if so was it successful? Also please reply if you experience the same difficulties as I do when you are out?

Hannah