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    #16
    Originally posted by RP0521 View Post
    I asked if there was an alternative mattress available available, I was told no,
    That, my friend, is a giant porky 🤥 There are alternatives - have you an MND Nurse? xx
    ​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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      #17
      Ellie is absolutely right. NHS should provide a mattress that meets your needs - and there are various types. I guess one issue might be that they sometimes judge clinical need based on risk of pressure sores and skin breakdown specifically - rather than taking into account other factors.

      I'm not suggesting anyone buy an Opera mattress themselves - but their range gives you a good idea of the various options depending on risk level...

      https://operabeds.com/collections/pr...are-mattresses

      Also hire companies like this tend to have a range that's fairly similar to what's available on the NHS...

      https://mobilityhire.com/category/ma...air-mattresses

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        #18
        fjay you are so right re departments concentrating on only pressures. My tissue viability team told me 'well you have no sores. They did no assessment at all. I had to complain and explain that for 8hrs I can't move in bed, adding that I have muscle atrophy in my buttocks and shall we wait for the pressure sores.
        Diagnosed May 2021 bulbar onset als.

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          #19
          Electric air mattress fitted and turned on this afternoon, while the OT and PT were here, no instructions given but wow such s difference.
          I've been on the bed for hours with only very little back pain.

          So looking forward to a good nights sleep.

          Thank you all for your advice and help.

          Dispite me having spoken with the OT and PT from day one about how uncomfortable the original mattress was, it was only when I spoke to the OT and PT and asked if air mattress was available that one was ordered.

          Thank you all again for your help support and advice.

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            #20
            RP0521 Whoop, whoop!

            Sweet dreams xx
            ​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
              It's great to see the support and advice from people on this forum making a real difference.

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                #22
                So glad its sorted. Enjoy the zzzzzzzz's
                Diagnosed May 2021 bulbar onset als.

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                  #23
                  Well my lovely Physio emailed me this morning and said they are going to put another walker upstairs and then more bars around the house.

                  I hope she realises that I don't drink. (oh bars on the wall).

                  Talking to yourself isn't a sign of anything is it?

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                    #24
                    RP0521 - I hope the new mattress is still serving you well. When / if I finally get a hospital bed I think I will ask for one straight away.
                    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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                      #25
                      Originally posted by TinyLady View Post
                      When / if I finally get a hospital bed I think I will ask for one straight away.
                      Given how long it takes for some people to actually get an alternating air mattress, I think that's a good idea 😏
                      ​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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                        #26
                        The hospital bed is definitely positive in a number of ways helping with sitting up, laying back down, raising legs etc.

                        I think a double size bed would be worth exploring if it were available. I sleep on my side therefore my knees end up protruding over the side of the mattress, my head is also very close to the edge of the mattress if not slightly protruding if I'm not settled with a pillow.

                        As discussed previously an alternative mattress should be looked into from the outset, as we all have our own mattress preferences.

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                          #27
                          Originally posted by RP0521 View Post
                          I sleep on my side therefore my knees end up protruding over the side of the mattress
                          Not that your profile pic remotely suggests this 😉 nor am I implying it 😬 but there are wide beds (bariatric) available for people for whom a standard bed isn't suitable for whatever reason.

                          My Community Nurse offered me a bariatric bed so my kids, who were very young at the time, could get in for a snuggle, which was really thoughtful of her. Unfortunately the plan fell apart because bariatric alternating air mattresses aren't suitable for a 48kg person 😏


                          Originally posted by RP0521 View Post
                          my head is also very close to the edge of the mattress if not slightly protruding
                          There is a bed frame extension available to lengthen the bed, then an insert is put in the gap between the mattress and the head/foot of the bed - ask whoever ordered your bed. xx
                          ​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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                            #28
                            Wasn't that lovely of the community nurse to think that though.

                            I have a massive normal bed and just sleep right on the edge of it, so on my left there is room for about four people.

                            It was so funny on Friday as someone that works for me, came to see me, to bring up someone to do housekeeping bits, so I had colleague sitting on bed with me, the carer/housekeeper sat on a chair at the end and then a mechanic arrived and was standing in the bedroom too.

                            Amazing how unbothered we becomes by these things.

                            Mechanic came as I want to hear an old car that I have start up again, problem was that the new distributor they sent didn't work.

                            Ah, boys and their toys.

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