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    Neck brace

    The latest thing to go wrong with me is my neck. I am having trouble holding my head up. I have just got a neck brace from Amazon as I was having to wait an age to get one from the appropriate authorities. It has been good so far but what I want to know is are you supposed to wear it all the time. I am worried that my neck muscles will deteriorate even more if I don’t use them at least some of the time.
    Has anyone had any experience of dealing with this?

    #2
    hi aidan my neck going the same way. its the worst thing so far not been able to hold it up. hope you find your answers mate

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      #3
      Originally posted by Aidan in Shrewsbury View Post
      I want to know is are you supposed to wear it all the time.
      Wear it as much as you need to Aidan, it will prevent pain, not only in your neck, but in adjacent muscles too.

      Originally posted by Aidan in Shrewsbury View Post
      I am worried that my neck muscles will deteriorate even more if I don’t use them at least some of the time.
      No, you're helping your neck, shoulder and back muscles support your head by wearing a suitable neck brace, you're not replacing the muscles.

      If it's your Community OT holding up the assessment for the brace, contact your MND Clinic or hospice OT (or vice versa)

      Wearing the wrong brace might cause pain, push your head forward, cause jaw issues etc. over time - though you seem happy with yours 👍 May I ask what you got? 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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        #4
        I got the velpeau from Amazon as it had quite good reviews.

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          #5
          Coincidence, we have been for an orthotics appointment today and have been shown a few options.

          Some look like torture contraptions, some look very big and some are puzzling.

          The Orthotist was very helpful and explained that neck support is very difficult to get right first time, so a few options may need to be tried before finding the right one.

          They used a word which I can't remember for when the head flops to one side or another, my husband head has started bending to the left as the muscles are shortening on one side only.

          They have recommended a "strap" for when he is in the wheelchair across his forehead to hold his head in position and ordered a brace to support his head at other times. I think its a headmaster collar that they have ordered.

          They said its difficult to provide sufficient support whilst still allowing some small movement for communication. Eg nodding or shaking the head.

          I will let you know how we get on when it arrives.

          Have tried various travel neck supports, none have been suitable and have a hospital supplied soft foam neck collar which isn't supportive enough.

          Fortunately orthotists say they have dealt with quite a few MND patients over the years.
          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

          Respiratory function - CO² Up

          No speech but sense of humour still fully intact.

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            #6
            Originally posted by MMG View Post
            Some look like torture contraptions
            😂 They sometimes feel like one too 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
              Thanks everyone for the advice given.

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                #8
                Had appointment this morning with Orthotics at local hospital. He had obtained an MKS Osteo back brace from German company to pull shoulders back and improve posture which it does. Also gave me a Hensinger collar to hold head up more than Headmasters collar I have been wearing which it does although needs to be broken in like a new pair of shoes by being worn in for increasing periods of time until muscles get used to it.Told to wear both as much as possible.

                Now having a halo brace made to measure to pull head back via a band round forehead to see if even better.
                Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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                  #9
                  Good luck with the Hensinger collar and back brace John D Hope it's a winning combination for you. 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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                    #10
                    anyone got ideas of how to wear a neck brase and swallow saliva as I have to put my head down to swallow safely.

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                      #11
                      House44 Yeah, neck braces can restrict swallowing quite a lot - do you take anything to reduce your saliva production Wayne? 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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                        #12
                        hi ellie I've got the patch behind the ear. don't completely stop it though x

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