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    Can anyone recommend a good thin pillow I have major problems with my head position in bed we have trieda combination of pillows different thicknesses and shapes. I am getting really stressed over this as I now have lost the control of muscles in my neck and unless my head is chin is kept off my chin I find it hard to breathe which is adding to the anxiety problems a long with the saliva issues I am really at my wits end the only relaxing time I have is when I have my sleeping tablet and am fast asleep.

    it has got to the stage that I am stressing out the carers and Jay. I just don't know what to do next I can't take much more of this

    Hoping someone will be able to suggest something

    Hi Rumba;

    Good to hear from you but it is very bad issue.

    I wonder if someone can make a pillow for you out off bits of foam. It is so hard because even the smallest corner, or ripple digs in. I know Dunelm do some different shaped pillows but I've not been and looked at them.

    I feel for you.

    Hugs Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


      I have to admit I'm struggling to visualise your predicament Andrea, sorry. Tell your OT if you haven't done so already.

      When I'm lying down, the joy is that my very weak neck doesn't have to support my heavy head and it sinks into my memory foam pillow. I need little beanbags either side of my head to keep it from lolling to one side.

      I find good support in my memory foam pillow for back sleepers.

      Do you sleep with your head at an incline? If you do, it may be too high, so your neck has to support your head, which it can't, hence the droop.

      Would you consider using BiPAP for your breathing?

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


        Hi Rumba,

        I cannot advise you from experience - but if you havn't yet tried something like the Sissel Plus adjustable pillow or the Harley Wave Pillow - maybe one of these, or similar,would be suitable?

        Orthopaedic pillow that prevents neck pain to help gain good sleepStop neck and back pain for good with this cervical pillowAdjustable using the removable insert so you can find your perfect fit! High quality polyurethane foam provides comfortable support for your neck and comes with a removable, breathable soft coverUnique ventilation system help keep you at the perfect temperature for sleeping

        Q00720- The Harley Wave Pillow is from the award winning range of Harley Orthopaedic Pillows. By combining great design, the best possible materials and the highest standards of production the Harley orthopaedic range has built a reputation for delivering the most effective products available.

        Hopefully, you will be able to get some advice from your OT, because it must be very frustrating having to try various options that don't work for you. I hope a solution can be found for you very soon.

        Kayleigh x
        Last edited by Kayleigh; 13 January 2019, 15:29.


          I bought a memory foam pillow months ago but didn't like it. It was too hard. I prefer a softer pillow on top of a former one. I used to only have one pillow but have found that two helps my breathing. I have to play about with it so it doesn't strain my back. 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.


            You might find a neck roll better try a travel pillow you know the U shape ones.