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    #16
    That sounds great Dina !

    I have grab rails and a bed frame and I can turn in the night but it's a struggle. I have to take the duvet off to move my legs with my arms. I usually go straight back to sleep but it wakes my husband as I have generally thrown the whole duvet on top of him !

    I am hoping it will be easier in warmer weather as no covers but I am going to talk to my OT
    about alternatives. The silky sheets sound great.

    Love Debbie x

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      #17
      Here's to another good sleep tonight Dina. If the unit on the floor is getting in the way, sometimes putting a folded towel between the bed frame and control unit absorbs the noise.

      Good luck with it!

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

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        #18
        Thanks for the tip, Ellie.
        I've been using the cushion in my armchair today but I don't think I have it in the right position. I shall the District Nurse when she comes on Friday.
        Dina

        Trying to keep positive, but not always managing.

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          #19
          Hi Debbie,

          I wonder if a fleece blanket would be better for you, it's not as bulky as a duvet.

          I can only cope with a sheet and a fleece blanket, as I find the duvet physically too heavy on my body - mind you I cannot move, so your experience will probably be different.

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

          Comment


            #20
            Was it uncomfortable Dina or what did you feel was wrong with it?
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #21
              Hi again Miranda. I have a bed rail. It's not as good as the one I had on the divan In the other house. We're using an IKEA slatted base bed with wooden frame and ends now. That one wouldn't fit on this bed. The local services swapped that one for a smaller one (in height and width) that's the only one that'd fit on the slats. It's better than nothing. Lynne
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
              I'm staying positive and taking each day as it comes.

              Comment


                #22
                Hi Shrew. Sorry about Micks sore shoulders. Can you send a pic of the cuddle cushion please or a link to a site that sells them, so that I can have a look. Thanks Lynne
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                I'm staying positive and taking each day as it comes.

                Comment


                  #23
                  Originally posted by Lynne K View Post
                  Hi again Miranda. I have a bed rail. It's not as good as the one I had on the divan In the other house. We're using an IKEA slatted base bed with wooden frame and ends now. That one wouldn't fit on this bed. The local services swapped that one for a smaller one (in height and width) that's the only one that'd fit on the slats. It's better than nothing. Lynne
                  This is similar to the one I had. It fits under the mattress

                  https://www.completecareshop.co.uk/b...-bed-grab-rail

                  Hope you get something sorted, a good night's sleep is invaluable .

                  Comment


                    #24
                    Originally posted by Ellie View Post
                    Was it uncomfortable Dina or what did you feel was wrong with it?
                    Whereas the mattress movements were subtle, those in the cushion were more noticeable. It was difficult to sit comfortably as it felt as though I was riding a carousel.
                    Dina

                    Trying to keep positive, but not always managing.

                    Comment


                      #25
                      Oh dear!!

                      Dina, do you know if it can be adjusted to different weights or pressure levels and circulation time? You may need to find your Goldilocks settings... Or it may just take time to get used to it. The important thing is it should be comfy and eliminate the risk of getting pressure sores.

                      Some cushions alternate pairs of air cells each circulation - meaning if you are sitting on 4 long cells of air, numbers 1 & 3 will move in an air circulation, next time numbers 2 & 4 will move, and if the time between circulations is short, it'd feel strange for sure!

                      If you can't find your perfect setting (I've been given the nickname Goldilocks by OTs ) tell your nurse as there are other types of cushions available - you don't have to be uncomfortable.

                      Good luck!

                      Love Ellie.
                      Last edited by Ellie; 23 May 2019, 16:38.
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functioning limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #26
                        Thanks, Ellie.

                        When the chap delivered them he told me it's the nurses who adjust it. They are coming tomorrow morning so I'm hoping to talk to them about it.
                        Dina

                        Trying to keep positive, but not always managing.

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                          #27
                          Thanks Miranda, Lynne
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                          I'm staying positive and taking each day as it comes.

                          Comment


                            #28
                            Hi Lynne,

                            If you contact Jennie, the OT, she would probably get you one from the Equipment Service. It would save you paying for one.
                            Dina

                            Trying to keep positive, but not always managing.

                            Comment


                              #29
                              Good idea Dina, thanks, but I'm going to make the most of the one I've got. See you again soon, Lynne
                              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                              I'm staying positive and taking each day as it comes.

                              Comment


                                #30
                                I have found increasing difficulty in turning over in bed , but have found that sleeping on a ‘slippy sheet’ - (given to me when I fell over and fractured my ankle to to transition from chair to chair or to bed ) means that I can turn over much more easily - don’t think I’d like to be sleeping on nylon in the summer but now it’s made a world of difference to my night’s sleep ....

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