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    Beds

    Hi all. So I've been messed around re a decent bed and mattress. They are coming out to see me Thursday.

    I would like to know what mattresses you use etc. Is anyone still in a normal bed?

    I have issues of pain in bum hip and shoulder due to muscle wastage.

    Would love some ideas to put to them.
    Diagnosed May 2021 bulbar onset als.

    #2
    Hi shelly21 sorry to hear you've been messed around. I'm still in my 'normal' bed with a mattress topper added....now that I'm all skin & boneπŸ™„
    Still comfortable so will keep while I canπŸ‘πŸ»πŸ˜˜
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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      #3
      shelly21 For several years, I slept on my alternating air mattress on top of a normal mattress in a double bed, and used the standing hoist without issue.

      I moved to a profiling bed only when it was obvious that I needed the functionality of a profile bed, namely the back raise and adjustable height. 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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        #4
        Ellie and Linda oh you wonderful girls. I have been rail roaded into an hospital bed without even assessing me. I will now go back to me very comfortable double bed and ask for the air mattress.

        I've been in agony on a cheap nasty used nhs rental foam thing which when my hips depress the mattress it touches the metal on the hospital bed. X
        Diagnosed May 2021 bulbar onset als.

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          #5
          shelly21 sounds like tortureπŸ™„πŸ˜±πŸ˜˜πŸ˜˜
          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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            #6
            My husband had to sleep propped up quite early after diagnosis and on a normal bed he found he would just slip down. A hospital bed and 'another bed for you' were mentioned to us early on but we were just so dismayed at the idea of sleeping separately. MND brings so many inevitable losses along the way without having them forced on us.

            So hubby cashed in a small pension and we bought two profiling beds - a full one for him and one that had only the head and feet tilting positions for me. We had them pushed together and slept under one quilt as though it was a normal double bed.

            That worked really well for us and it meant we never lost the comfort of being able to hold hands at night, also he was able to awaken me quickly if he needed me and that wouldn't have worked as well if we'd been in separate beds.

            He always slept on a normal mattress (a high-quality sprung mattress, not memory foam) and though recently I had started to look into an air-mattress topper he didn't need it yet but he'd had a pressure sore and was becoming less mobile so I thought it was probably going to be the next step.

            Being comfortable at night is absolutely crucial so do whatever works for you - not what you're expected to do...
            Husband died 14 months after MND diagnosis.

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              #7
              Betty May We had 2 electric beds together but when the hospital bed just turned up with no warning we had to get rid of 1 of them to make way.

              This has left me depressed and whilst they take weeks to sort I'm left in pain on a awful mattress.

              We are desperately trying to sort it as I'm on my 16th night with very little sleep x
              Diagnosed May 2021 bulbar onset als.

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                #8
                shelly21

                You've not been treated properly Shelly - having equipment left with you without proper assessment, somebody needs their backside kicked. Especially as while they've ticked a box you've been left in a worse situation.

                You've got somebody coming out this Thursday? - hopefully they can get on the case and sort out a better mattress for you. In the meantime can you use that other electric bed or another bed?...

                Is buying your own beds an option (and they're not cheap but a good investment).

                Do you have a rister-recliner that you can nap on during the day?

                I'm aware my post doesn't offer any practical help but hang in there Shelly - the sleep situation will be sorted and it will make so much difference to you xx
                Husband died 14 months after MND diagnosis.

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                  #9
                  I have moved upstairs to our old bed. I'm staying up here for a few days as I have the bathroom and a chair etc.

                  They are doing the assessment Thursday. I've since found out it was booked for 23rd December but they said they had no staff.

                  I will be complaining Thursday re being put in this situation xx
                  Diagnosed May 2021 bulbar onset als.

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                    #10
                    shelly21 hope you get some sleep...makes such a huge difference I findπŸ€—πŸ˜˜
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                      #11
                      shelly21, I slept on my riser recliner for a week until my bed was sorted. I did manage to get some decent sleep on that.
                      Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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