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    Mattress for Profiling Bed

    We have nearly completed work on a downstairs bedroom/bathroom for my wife. Our OT is kindly providing a profiling bed but we are wondering about mattresses.

    My wife has a very painful back, especially around the coccyx, and I wondered if anybody on here has experience of selecting mattresses for this type of discomfort.

    I guess the same applies to chairs. She has a coccyx cushion but it's too hard. Any suggestions or advice would be so welcome.

    #2
    Hi Ken. You should be supplied a mattress. The air alternating type are very good. Ask your OT for an assessment. I tried a few before I found the right one.
    Diagnosed May 2021 bulbar onset als.

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      #3
      Ken as Shelly said they will supply free mattress with the bed and also ask your OT to provide a riser chair which can be issued from MNDA free of charge which is specially measured and has cushioned back rest, arms and seat. It takes several weeks to be made though xx

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        #4
        Ken The bed should come with a mattress and the district nurse ideally should have assessed your wife for a pressure relieving mattress at the same time as ordering the bed 😬

        I cannot move in bed, not at all, and I am very comfortable staying in the same position for 10-11hrs on my alternating pure air mattress. I am classed as 'very high risk' of pressure sores and have avoided even a hint of one because of using an alternating air mattress.

        As above, get the OT involved in a suitable cushion and/or riser recliner armchair. 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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          #5
          Hubby was supplied with a hybrid mattress which didn't have the air pump fitted initially but it was attached later and he loves it.

          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

          Sense of humour intact throughout.

          Sadly passed away peacefully 2/9/22

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            #6
            Originally posted by Piglet View Post
            Ken as Shelly said they will supply free mattress with the bed and also ask your OT to provide a riser chair which can be issued from MNDA free of charge which is specially measured and has cushioned back rest, arms and seat. It takes several weeks to be made though xx
            I would love it if MNDA would supply me a chair! Measured up Jan by OT told there was a delay . Then nothing spring came enquiry made ( members on this forum will remember this ) measured up again in my home assured that MNDA would supply one temporary whist waiting and now Aug ....still nothing...given up now .

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              #7
              Derbyram21 No don’t give up. That’s shocking. We’ve got one. You are entitled. I would contact the O T again and complain. It’s a given that all with MND are entitled to special chair ☹️☹️

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                #8
                Derbyram21 - I got mine 2 weeks ago having ordered it in July. Mine had to be specially made small enough and in fabric as I am allergic to plastic. I had to contribute, but it was part funded by MNDA.

                Contact your local branch. Don't give up. Mine is an absolute godsend and no idea how I coped without it.
                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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                  #9
                  Originally posted by TinyLady View Post
                  Mine had to be specially made small enough and in fabric as I am allergic to plastic. I had to contribute, but it was part funded by MNDA.
                  Ouch, that's discriminatory 😟

                  Thank goodness the MNDA part funded it and I'm sure it is money well spent on your part.

                  Wishing you many restful nights on your Diva Mattress 😉😁😁🤗
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    Ellie - thanks, I did think it was a little unfair I had to pay beyond a standard chair through no fault of my own. But I'm just grateful to have one and somewhere comfortable to sit (and snooze) all day.
                    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!

                    Comment


                      #11
                      I have a recliner chair, I got it through my OT . Our are has a community equipment store. All things are free , anything you no longer use can just be taken back.

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                        #12
                        I can’t remember how to start a new post, so will piggy back on this one. The district nurse has got me an alternating air mattress because although I haven’t got any visible sores, my bum is getting very painful especially round my coccyx. They left me with no instruction booklet. I tried it with my mattress topper and didn’t get any pain, but the topper is getting bumpy and uncomfortable where my bum goes. So last night I tried it without topper. , and I found it so uncomfortable. I find it lacking in support for my lower back where I put a pillow, but still very uncomfortable. Will put the topper back.
                        But what happens in a power cut? Does it deflate? Can I switch it off in the day if not using it???
                        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                        Comment


                          #13
                          Hi Heather R Firstly - starting new topics. First you need to find the category you want to post under.
                          At the top of this thread it shows the route to this category like Forum > Motor Neurone Disease General Discussion > Life with MND
                          ​If you click on e.g. "Life with MND" it will take you to the posts within that category.
                          There is a [+ New Topic] button to start new threads.

                          To try to answer your other questions - I am likewise looking for ways to stop waking up every couple of hours with painful hips.
                          I turn the mattress pump off when I get up, and the mattress seems to stay inflated.
                          I am also thinking of experimenting with a mattress topper as you did to try to get some relief.
                          Good luck with it.
                          Hi, I'm Eddie.
                          Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                          Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
                          Still wondering what the future will bring.

                          Comment


                            #14
                            Many thanks Eddie. Glad you can turn off without it going down . Reading other threads I see that adjusting the settings might help. Ellie’s description of lying on marshmallows so lovely and far from my experience so far. I hope the district nurse who ordered it will come back and advise . My carer thinks you’re not supposed to have anything like a topper on it as it loses it’s effectiveness, but at least I didn’t get any pain using it so sufficient movement was probably coming through. Let’s hope we’ll get sorted somehow x
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                            Comment


                              #15
                              Heather R I hope it's just because the settings on the pump are wrong for you, Heather.

                              What mattress make and model it is and I'll look at it?

                              Yes, turn it off during the day and turn it on a good 10-20mins before you go to bed so it inflates fully.

                              It will deflate without power, by how much depends on mattress type. 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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