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    Beds

    I was advised by my neurologist to get an NHS Profile bed to reduce my serious nightly pain

    I’ve slept on various IKEA mattresses on our IKEA slatted bed: a foam mattress; a memory foam mattress and on our pocket sprung mattress with a thick soft topper on. I’m desperate for a good nights sleep.

    I’ve exchanged messages with Ellie about mattresses in particular about alternating air ones. Thanks again Ellie

    My OT came out to discuss options. She said that not everyone likes an alternating air mattress and they usually only order those for somebody who has begun having bed sores but she’d order it if I asked. I couldn’t decide so have asked to start with the foam mattress and go from there.

    We discussed me getting one of Laybrooks beds: dual and single beds. I guess that single will be better for access both sides of the bed. I’d apply for a Grant if it went down this route they’re expensive. My husband will need a new single bed too whatever I get. So this is the option if the Profile bed doesn’t work for me.

    Ive just bought single bedding. The expense never ends does it. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    #2
    So Lynne, are you going to try the NHS bed first and see how that works out?

    The Laybrook beds are popular, especially the linked ones - basically 2 single beds the bases of which are linked together and can be separated if necessary (for access) It's best if one side of the bed can be raised, easier on people's backs if you need help in bed.

    The thing which does come up is that the beds have divan bases, not good for hoist access should you ever need a portable hoist. The bed could be raised on some sort of blocks if necessary or maybe Laybrook would make a bespoke bed?

    It does make me cross that an OT would say that they'd supply an alternating air mattress after a person develops a pressure sore (and in some amount of pain!) when the whole purpose of an alternating air mattress is to prevent pressure sores from developing. Treating pressure sores can cost more than preventing them developing, ie providing an air mattress or proper seat cushion etc.

    Hope you get relief very soon.

    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


      #3
      Lynne. You are right it is a real dilemma and can turnout to be very expensive. You will have got excellent advice from Ellie and your OT on mattresses etc. I will come from a different angle based totally on my experience.

      We tried a hospital bed twice and for various reasons they didn’t work for Ann. She was happiest in her own double bed. During the course of her progression our excellent OT supplied various mattresses. The penultimate one was an alternating job which suited Ann fine. My point is you don’t necessarily have to go into a single bed if you don’t want. I managed perfectly well turning and hoisting Ann in a double bed. You probably will need to get a couple of good quality slippy bottom sheets ( not the rubbish supplied by the NHS ). Towards the end I took to sleeping in the same bed so I could hear if Ann disturbed. We even found a way of turning her without me getting out of bed.

      Comment


        #4
        Thanks Ellie. I’ve got a Laybrook catalogue so I know all that they have. Steve’s just measured how much room would be available next to a profile bed in our bedroom. He couldn’t get his preferred IKEA single bed in there. He can sleep in our other bedroom on our sofa bed temporarily. But neither of us want us to be in separate rooms. A dual but would fit in just but how would he or carers manage turning me later with my mattress on the right and his on the left? Lynne x
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.

        Comment


          #5
          Hi Lynne, Neil had a profiling NHS bed delivered on Friday. Its a foam mattress. He finds it very comfortable and now sleeps all night without pain. His back and neck were becoming very sore in our bed.

          I feel very saddened to hear of the differences in funding for people’s needs and it appears to be a post code lottery. We are in Scotland and I feel very fortunate but also now guilty. We only had to pay a small percentage for the alterations (wet room and gerebit toilet) - not means tested, nothing for the freeway shower/commode chair, the NHS bed, lightweight wheelchair and going to be fitted for power chair and assessment done for outside ramp - all paid for. And MND Scotland provided a brand new riser/recliner chair. People and families of the terminally ill shouldn’t have the financial stress on top of what they are having to cope with. Sorry. Rant over. Lynda x

          Comment


            #6
            Louise seems quite happy for me to be downstairs when the time comes. I'm not so sure. It's the elephant in the room for us.
            Each day is made easier with a bit of humour.

            Comment


              #7
              Originally posted by Lynne K View Post
              ... how would he or carers manage turning me later with my mattress on the right and his on the left?
              That's where the 'linked' beds come in. They can be pulled apart to let people access both sides of a now-single bed, if you have enough space, of course - you can see in the photo how the bases are linked together by a bracket/hook:



              Just to complicate what Bowler said about carers working around a double bed - if you find yourself needing paid carers, they may refuse to stretch and reach over you, but this depends on how much manual handling is involved.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8


                Just to complicate what Bowler said about carers working around a double bed - if you find yourself needing paid carers, they may refuse to stretch and reach over you, but this depends on how much manual handling is involved.[/QUOTE]

                Good point Ellie. So many things to take into account.

                Comment


                  #9
                  Originally posted by GaryM View Post
                  Louise seems quite happy for me to be downstairs when the time comes. I'm not so sure. It's the elephant in the room for us.
                  I really understand that, Gary. We took drastic action (moved to a bungalow) but it would have taken a lot out of me if I had to decamp to the sitting room. That said, eventually I would not have had a choice, as no way were we having a through floor lift in the house...
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Bowler makes a fair point, you have to consider professional carers and they need to do their job without risk to themselves.
                    Copyright Graham

                    Comment


                      #11
                      The hands down worst things to happen in my lifetime are the Health and Safety and the Human Rights Act. Common sense down the toilet. 😁x
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                      Comment


                        #12
                        Thank you Ellie, Graham, Bowler, Gary and Mathew. I’m considering all points raised by you fab lot. My OT has offered to come out again. I’ve got the Laybrook catalogue so all information will be to hand. If it have a NHS bed permanently then we’d saying goodbye to sleeping together but I’m not at all comfortable in our double bed so change needs to happen. Lynne
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

                        Comment


                          #13
                          I wish my marriages were like yours I really do. 🤗😍👍x
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                          Comment


                            #14
                            An update: my OT came out again this afternoon. She measured our bedroom again with the NHS bed and Laybrook’s beds in consideration. Also considered was how hoists would be managed later on. The upshot is that our double bed has to be broken down (an IKEA slatted bed) and taken to our storage place that my husband has been renting since we moved to this little flat from a three bedroomed terraced house.

                            Steve said that our mattress is too heavy for him to move on his own and even difficult for two. Because of lockdown it’ll be when restrictions are partially lifted that this can be done so a friend can come to help.

                            When the NHS bed comes it’ll be temporary so that I can see if I can sleep comfortably on a foam mattress with electronic tilting.

                            Our bedroom is too small for an NHS bed and a single for Steve. So he’ll sleep temporarily on our sofa bed in the other bedroom. This has to be temporary as we want to be in the same room and for as long that we are able to be butted up to one another.

                            I’ve priced a Laybrook bed for me. With the up and down carers addition (so that the mattress can be raised and lowered) and the slide back option (so that after raising the top of the mattress it will slide back towards the headboard so the bedside table can be accessed. Then there’s a headboard (£139). It comes to a little over £2000. I heard that MNDA can usually offer Grants towards purchase prices but it’s likely that I’d have to find a huge amount for the balance.

                            Steve would have to buy a single bed. Fingers cross for a carers Grant.

                            My wardrobe has to be broken down (very heavy and awkward) and rebuilt in our others bedroom. A shelf unit from that room will have to come out to fit the wardrobe in. With luck this unit will slot into the corner of our bedroom at the bottom of Steve’s single bed. It’s got a lot of books and family history stuff on so really need it.

                            Anyway, we have a tentative plan but Steve isn’t happy because of the amount of work entailed. He’ll need the same friend to help him. It’s good to have such reliable friends but they’re all getting older so it’ll wear them out. Lynne
                            Last edited by Lynne K; 12 March 2021, 11:52.
                            ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                            I'm staying positive and taking each day as it comes.

                            Comment


                              #15
                              Hi Lynne,

                              You should be able to claim the care support grant of up to £1500. You need a health care professional to complete the application.
                              https://z9t2c4x9.stackpathcdn.com/ap...dance-2021.pdf
                              I’m going to do this even if it kills me!

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