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    #16
    Hi Ellie,

    It's ok, I'm not running around in a panic at what you've said. I have been keeping an eye on things as I know how awful pressure sores can be. My brother-in-law had one that just wouldn't heal for months so I know I have to be careful.

    My local Wheelchair Team are due to come and see me about changing the cushion in my wheelchair. I do use the tilt function on the wheelchair to ease the pressure.

    I am being a good girl and looking after my sore bottom, honest.

    I have an air cushion in my armchair and an air mattress on my profiling bed
    Dina

    Trying to keep positive, but not always managing.

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      #17
      Hi Dina,

      I am pleased that you realise that you are at risk and be very careful.

      Do mention it when trying to get equipment as it is a lot more expensive for them to deal with sores and more painful to you.

      Love Terry
      TB once said that "The forum is still the best source for friendship and information."

      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

      Comment


        #18
        It's bad but good that you know how serious pressure sores can be, Dina.

        Do you think your air mattress and air cushion are good enough?

        Hope you don't have to wait long for your wheelchair cushion - there are many types of pressure relief cushions available, so if the first one doesn't improve your comfort, don't despair, there is one out there for you!!

        And you won't know for sure how good a cushion really is until you've sat on it for a day or two - so remember to reserve judgement on it when wheelchair services first give you the cushion...

        Take care.

        Love Ellie.
        ​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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          #19
          Thanks for re-posting the thread Dina. Pressure sores are not something I knew much about and so these posts have been very useful to read. If I get any suspect red patches I will make sure I get them checked out.

          I find that this forum is a great mine of information and tips, including lots of important issues such as pressure sores, that healthcare professionals have not told me about yet.

          I hope you and everyone in this forum family are having a lovely weekend.

          Love Kayleigh xx
          Last edited by Kayleigh; 13 July 2019, 15:17.

          Comment


            #20
            Originally posted by Kayleigh View Post
            If I get any suspect red patches I will make sure I get them checked out.
            Before an area gets red Kayleigh, the skin often first looks 'dry' or greyish and is a painless warning sign that the tissue below isn't happy - the redness and soreness appear later.

            And you need eyes in the back of your head too, or rather people who can keep an eye on your back and other parts you cannot see yourself

            I am fortunate that my carer spotted a 'funny looking' bit of skin on my very prominent shoulder blade, which was the start of a pressure sore. I got gel pads from my OT whilst waiting for a new backrest.

            But yes, you're right to be very vigilant re your skin integrity - another thing to add to the list

            Love Ellie.
            ​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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              #21
              Many thanks Ellie. It’s very kind and caring of you to provide such detailed information and advice.
              Love Kayleigh x

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                #22
                Thank you for everyone for the valuable information on pressure sores.

                The MND nurse came to our house to look at how I was sitting or laying because of my broken leg. She advised us both of areas to keep an eye on, like the back of my ankle.

                I wrongly assumed there would be pain or irritation first but she said a patch of dry skin could be a warning sign.

                On a lighter note, I am getting used to my new turning circle, with my leg in a splint. Its other people who just need to keep their distance.

                Love Debbie x

                Comment


                  #23
                  Originally posted by Kayleigh View Post
                  Thanks for re-posting the thread Dina. Pressure sores are not something I knew much about and so these posts have been very useful to read. If I get any suspect red patches I will make sure I get them checked out.

                  I find that this forum is a great mine of information and tips, including lots of important issues such as pressure sores, that healthcare professionals have not told me about yet.

                  I hope you and everyone in this forum family are having a lovely weekend.

                  Love Kayleigh xx
                  Hi Kayleigh,

                  When I read this thread I thought it would be worth posting on it so that it brings it to members' attention.

                  Ellie, I don't think it will be long until the Wheelchair Team visit. I did have an appointment booked but had to cancel on the day as I wasn't upmto jumping in and out of the hoist and the wheelchair to test cushions!
                  Dina

                  Trying to keep positive, but not always managing.

                  Comment


                    #24
                    Debbie, no harm in getting your GP to prescribe Cavilon or Proshield barrier cream for any vulnerable areas of your skin, i.e. any body part in constant contact, or almost constant contact, with a non-moving surface. (I use Cavilon on my ankle bones daily)

                    Don't suppose you've any sheepskin lying around on which to rest your heel??

                    Hope you're as comfy as you can be - at least there's cracking tennis to watch

                    Love Ellie.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #25
                      Thanks for the top tips Ellie and for bringing the subject up Dina.

                      I am going to ring my GP in the morning for a barrier cream. I would send my hubby out for sheepskin but I can see he has a day planned watching cricket.

                      My leg is finally comfortable... bliss ! and I am loving the fantastic tennis. We will really miss it next week.

                      Thanks everyone,
                      Love Debbie x

                      Comment


                        #26
                        Hi Debbie,

                        Good to hear that you reasonably comfortable and have your leg set and straight.

                        It would be good to keep a eye on sores in your situation.

                        How long do you have to keep it straight and in plaster. Move things as much as you can when you're aloud.

                        Wish you a speedy recovery.

                        Love Terry
                        TB once said that "The forum is still the best source for friendship and information."

                        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                        Comment


                          #27
                          Can’t believe Dina is no longer with us, since being bed bound for two weeks and I’ve now been given a riser recliner and I feel the top of my bottom, base of my spine getting more and more tender, Thank you Dina and everyone for all the advice on this thread, my GP and OT will be getting a call on Monday

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