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Useful tips to use in your disability

By

Pauline Medd

I'm going to be perfectly honest with you I have decided to write this because, before I became as bad as I am I used to say to people how do you manage and I would get oh! I take precautions (what does that mean), these are useful tips that I have found during my disability, not that anybody has told me about them they probably have happened through need, so I would like to share them I hope they will be useful to you.

Grab Rails

As your disability gets worse holding on to the sink, toilet roll holder, or dado is not an option especially for your own safety, why not have a word with your occupational therapist about adaptations. You may need to think about grab rails, not only do they help you get on and off the toilet they give you security. I have never liked toilet extensions, I didn’t feel safe with it but that is not saying it wouldn’t suit you. I have a cos-o-mat toilet with an extension on the bottom to give extra height this washes your bottom when finished toileting, fabulous invention.

Shower

Depending on your disability, but if your disability is the kind that is likely to get worse and you are considering getting a shower because the bath is becoming too difficult to get in and out off , then, consider a roll in shower. There are some things you have to look at, is the door wide enough to get the chair through to get to the bedroom to get dressed and is the toilet big enough for people to work round you, if so I would advise a wet floor with a drain in the centre of the shower area making sure it has been properly channelled so all the water goes down the drain and not into your bedroom, this is very important too much work to take all the floor back up again. The walls, I think it is called perpetex, anyway boards that can take any amount of water I find a better option than tiles too many problems with tiles. You could have tiles as an alternative texture in the other part of the shower room as a contrast, but not on the floor, too dangerous. I you are still able to transfer a wet chair is good, I don’t like the chairs attached to the wall, a bit scary. There is also the chair on wheels which is a must if carers are necessary to help you.

Hoist

One day I was stuck on the bed until three in the afternoon it was then I said no more, my nurse at the time wanted me to get rid of half my bedroom furniture and put in a single bed, how do you move about in a single bed? I go from one side of the bed to the other to give one hip a rest how would I do that in a single bed, and all this to use a portable hoist and how does this maintain independence?. Plan 2 an over head hoist, what a fantastic piece of equipment and you can use it yourself if you are able.  If you need an overhead hoist you will have to get a structural report done probably done by the council if they are going to be installing it, always easier if you are in a bungalow or similar.

Catheter use

In 1998 I wanted to go on holiday but the problem was how do I fly, I was still able to transfer at this stage, if you can still transfer go on as many holidays as you can afford. I discussed this with my nurse and the decision was made to fit a urethral catheter, the nurse felt that the catheter would be taken back out again after the holiday but I felt it made my life a lot easier not having to worry about getting to the toilet in time and getting up through the night to get to the toilet. I also used a flip valve which was attached to the catheter this enabled me to wear shorts; it also enables you to still retain bladder control.  This type worked for three years and what with the multiple sclerosis and the bladder going into spasm and throwing the catheter out it was decided to go for a suprapubic catheter which is putting the catheter into the bladder above the pubic bone this has worked happily since, the latest proposal is to put a silver catheter in because of spasm problems and urine inflections, one week in use the bladder seems to be a lot happier. Along with the catheter use I have found a 4 pint milk jug that you get from the supermarket to be an excellent asset, when finished with milk clean out the jug, sterilise with one of the baby sterilising tablets, fill up with water and sterilising tablet and leave an hour, empty, and take this with you when you go out in the car or your accessible vehicle a godsend when you can't find a disabled toilet or the toilet you have seen is not very clean.  Also take this to bed this allows you to empty the catheter bag without having to get out of bed but remember sterilise on a daily basis.

Ps had to go back to the silicon catheter, the silver didn’t work for me.

 

Bed

One of the problems I found ones going to bed, how do I move about. I found a solution was wearing pyjamas, also sewing tape round the bottom of the trousers at the hem and at bedtime pull the trousers up to the knees and when you try to turn in bed the tape round the bottom of the trousers at your knees helps give strength and by pulling on them enables you to move in bed.

Which tape to use?

You can get nylon and you can get cotton depending if you are allergic to nylon, at any sewing shop. I have found three quarters of an inch wide is plenty.  Measure  round the knee and give an extra inch for comfort you don’t want to cut off your circulation; add an extra 2 inches for over lay. If you have a sewing machine great, failing that does a relative have one?  If the trouser bottoms are wider then fold the material over in places.

Other useful items to help you turn in bed are either a wrought iron or brass headboard but this has to be strong enough for you to hold on to, to pull yourself across.  I never understand why people feel that a disabled person wants to sleep in a single bed.

Cleanliness in the house

If you are like me and have many people coming into your house some are nurses God bless them they do a wonderful job but they may have been  in 14 houses before yours and some are very careful to wash their hands some are not, remember its your health don't be frightened to ask them to wash their hands. So why not make sure your light switches and door handles which is what they have touched before they get to you are cleaned on a regular basis.

Wheelchairs

I was always led to believe use it or lose it, this could be your arms or your legs and, so I went around for many years with the wheelchairs that needed to be pushed, what I missed out on was the enjoyment of being able to get out easier and the freedom of the electric wheelchair, so don't leave it too long before you get one.  I have a large electric wheelchair which enables me to get out and about with stability.  I also have an electric indoor wheelchair which will turn on a sixpence and it is wonderful but I would not go any further than my garden as there is not the same stability. The most comfortable one I find is my portable wheelchair so this is the one I find I sit in at night time. I also find a portable wheelchair very useful when I go to the toilet I can't move my feet about and therefore would find the foot peddles would get in the way on the electric wheelchairs, to avoid this I use the manual wheelchairs as a safety precaution in the toilet so I don't lose balance.

 I will add to this when I remember more.


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