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    Getting comfy

    Any advice to get comfy when sitting and lying for long periods of time ? Struggling to sleep because I feel pressure on coccyx.

    #2
    ann I was given a repose mattress topper which has helped me with pressure pain at night. But others might have different suggestions xx
    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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      #3
      Hi Ann. Not sure if you are mobile at all.
      Do you have a pressure chair. These can be applied for through you O T. Grants are available for special pressure relief raiser/recliner chairs via MNDA.
      Profiling beds can be issued via O T with special mattresses for pressure relief.
      Not sure if you have any of these. It was also advised if mobility is ok to try to get up at least every two hours to relieve any pressure.

      Hope you find some relief😊xx

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        #4
        Originally posted by ann View Post
        Any advice to get comfy when sitting and lying for long periods of time ? Struggling to sleep because I feel pressure on coccyx.
        Sitting: an air or gel cushion probably - ask your OT.

        Sleeping: if you're feeling pressure, you're high risk of developing a pressure sore which you definitely do not want. A decent alternating air mattress is what to aim for - see what your community nurse or OT can offer you. xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
        .

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          #5
          Thanks for suggestions I can move a bit very slowly 😂 waiting for hospital bed hopefully here soon. Doesn’t help not being able to turn over. I will speak to OT. 😁

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            #6
            Originally posted by ann View Post
            Thanks for suggestions I can move a bit very slowly 😂 waiting for hospital bed hopefully here soon. Doesn’t help not being able to turn over. I will speak to OT. 😁
            My Ann found something like this very useful to help her move in bed for a while. Should be readily available from your OT

            A double loop at each end that can be secured between bed base and mattress that is designed to assist with the transfer into and out of bed and to assist in lying

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              #7
              ann I have difficulty turning over in bed too. I have a hospital profiling bed and pressure relieving mattress, a bed lever similar to the one shown by Bowler and a Wendylett base sheet which is shinny, so makes turning over easier.

              All were provided free (long-term loan) by social services, via my OT.

              Hope you don't have to wait to long 🤞
              Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.

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                #8
                Thanks for all the replies, bed on order also purchased a blow up cushion yesterday (good old Amazon) which has helped.

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                  #9
                  Originally posted by ann View Post
                  ... bed on order ...
                  Hopefully you're not buying the bed, Ann 😬 what about a mattress? xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user
                  .

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