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    Still in hospital neck very sore

    I’m struggling to write this. Thanks everyone for messaging. I can’t answer all sorry. My hands are on their last. But while I can I wanted to ask what people who have arthritis in neck use for support in bed and other times. My neck I’d aching and staff can’t get me comfy. I can move my neck left and right but need support re sleeping. Pillows don’t squash down to support my neck as I used to do at home. Please post suggestions urgently. I’m on my last xxxx
    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
    Lynne K could hubby bring your pillows in from home xx
    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
      I asked but he didn’t and I can’t don’t what I used to do xx
      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


        #4
        Could you get hold of a neck pillow Lynne? That’s a pillow with a bump along one edge. Husband should be able to buy one - amazon sell them. I have arthritic neck and i find this sort of pillow helpful.
        Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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          #5
          Do you mean airline neck pillows? I’d cook in bed and still not deep enough for my support needs but very grateful for the suggestion xx
          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.

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            #6
            Lynne, if Steve won't bring in your pillows from home, can somebody else.

            I'm guessing the hospital pillows are those thin rubber-covered ones, not feather ones which can cuddle your neck.

            I use a support zone pillow which cradles my head and shoulders as I sleep on my back.

            Maybe the hospital physio could help?

            I'm sorry you're in pain.

            Love Ellie 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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              #7
              Please send a photo Ellie thanks xx
              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


                #8
                My heart goes out to you. I hope all is sorted soon. ♥️😁🤗💐xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                  #9
                  I hope you get sorted soon Lynne xx
                  Janette x

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                    #10
                    Thanks Mathew and hubby is bringing pillows tomorrow. Physio just called in and is referring me to orthotics re collars but I can still move my head left and right and support it xx
                    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


                      #11
                      Hi Lynne. Im so sorry you're in so much pain. I've been thinking of you and wondering how you are so thank you for posting.

                      I really hope you get sorted with pillows. I can't turn in bed although I can move my neck ok so I sleep supported by lots of soft feather pillows on top of memory foam ones. If I didn't or they're not right I get a really stiff neck. I would imagine hospital ones aren't great .

                      Hopefully someone can bring your pillows from home ASAP.

                      Thinking of you and sending love and hugs xxx

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                        #12
                        Lynne K - good to hear from you. I have been thinking of you and wondering how you are getting on. I'm also wondering about pillows, so good question 🙂
                        Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                        Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                        Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                          #13
                          The photo doesn't do it justice Lynne.

                          I think the pillow Hakuna means is one of these, which I have used:

                          Neck support pillow.jpg

                          I also used a 'butterfly' pillow which has a cutaway neck part, like this one:

                          Butterfly pillow.jpg

                          Both of the above pillows are memory foam which I eventually found too hard. Hope the physio comes up with a comfy solution for you asap. 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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                            #14
                            I'm so happy seeing you post lynne. Like others I've been thinking of you. Hold on in there even though its tough right now. Big hugs x
                            Diagnosed May 2021 bulbar onset als.

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                              #15
                              Lynne K good to hear from you , but sorry about the pain. I have got one of those butterfly pillows that Ellie has shown, but prefer a feather pillow that I can shape to what is most comfortable. Hope you can find some improvement. Love Heather xx
                              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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