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Famous last words

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    Famous last words

    Today I took delivery of a variety of neck braces for sampling purposes. I know what I have said before but the constant neck pain is getting me down so something needed doing. I was wrong before so enjoy it while you can. 😁x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    You'll have to keep schtum from now on, given that you can no longer eat humble pie 🀣🀣

    Hope one, or more works for you x
    ​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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      #3
      Oh go on then....what you wrong πŸ˜πŸ˜‰

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        #4
        It's never advisable to tempt fate 😁x
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #5
          Will you be modelling the braces or giving points for comfort πŸ˜‰

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            #6
            Neil was referred by physio to orthotic department for a neck brace. He was advised not to have a collar due to bulbar onset and swallowing issues. May be an idea to ask for a referral to ensure its fitted properly. L

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              #7
              Ann had one of these but then she struggled to hold her head up. Don’t know if it’s what you are looking for Matthew


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                #8
                I have been wearing a soft collar for a couple of hours at a time while I wait for pain relief from the chemist. Out of everything else that has happened to me neck pain is the worst. 😒x
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #9
                  I think stress goes to the neck. It's just the worst place. Having something fitted properly sounds right because you don't want to aggravate your problem. Warmth and relaxation will help.
                  love and hugs Denise xxx

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                    #10
                    No it's because my neck muscles are weakening and can't hold my head up without straining. 😒x
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #11
                      πŸ˜˜πŸ˜πŸ˜šπŸ˜™πŸ˜™πŸ€—πŸ€—πŸ€—

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                        #12
                        I found that soft collars pushed by head forward and just moved the pain further down my spine, so weren't much use, but you might not need as much support as I do.

                        Rigid cervical collars with chin supports suit me best but I'm not mobile, so not being able to look around much isn't an issue for me - rigid collars with chin support give most support but inhibit much head movement. And, because it has a chin support, it doesn't sit directly on my throat.

                        This is similar to mine:

                        Neck support.jpg
                        Hope you get relief 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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                          #13
                          Luckily my pain meds arrived today and thanks for the info. When I am out and about I have to move my body to look both ways. MND just keeps giving. 😁x
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                            #14
                            Who'd have thought that sometimes it's better to be in a β€πŸ¦Ό 😏
                            ​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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                              #15
                              Have you seen the HeadUp (Sheffield Snood) Matthew?

                              https://vimeo.com/272414469
                              Each day is made easier with a bit of humour.

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