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    Types of collar

    Hi everyone, I wonder if you can advise. We've been supplied with the Headmaster collar the the Talar HeadUp one. My friend hates wearing them but will become increasingly reliant on them soon. The reason he doesn't like them is because of the amount of force/pressure that is exerted through the jaw and teeth. I've worn it too and was surprised about the stress it puts through the teeth. It's most noticeable when in a wheelchair when every lump and bump is felt and his teeth chatter and crunch etc.

    Other collars are available and we have a meeting with our Physio set up, but looking at the options, they're even more rigid than what we've got. I bought a rugby mouthguard for him to see if that would take some of the pressure away, but sadly that made it difficult for him to breathe and made him anxious, understandably.

    My question to you all - is there anything we haven't tried? Has anyone found a solution which pulls the head up and back with elastic from the forehead instead. For instance, we found this online and tried to fashion something like it, to try out, using Theraband and other things around the house! https://www.necksolutions.com/produc...-head-support/

    Or is there a full collar that has, for want of a better term, inbuilt suspension?! By that I mean, when there is a bump in the road the collar will spring with the bump and act as a shock absorber, while still holding the head up. I can see how it could work in my head, but no idea if such a thing exists.

    Any and all advice welcomed! Thank you


    #2
    DPcarer Sorry, I missed your post for some reason.

    I tried a DIY version of the Neck Solutions product, using a Theraband and a scarf, with similar results.

    It didnโ€™t work for me *but* my head droop is very pronounced. My main issue was the restraint needed to be tight to be effective, but that tightness led to pain in my neck, scapulae and thoracic spine. It may be more effective with a mild to moderate head droop.

    Fyi, I wore the HeadUp and the Headmaster, amongst others, and now wear a rigid cervical collar, which is the only type of collar capable of providing effective support. My physiotherapist provided all my collars.

    Good luck!

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

    โ€‹

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      #3
      I am getting a custom built one from my local hospital on Monday. I also wear a gum shield on my lower teeth, made for me at a Dental Hospital, 24/7. My teeth and tongue are so grateful! ๐Ÿ˜๐Ÿ˜xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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        #4
        Thanks Ellie and matthew55. We're still experimenting here. Finding a permanent solution doesn't even feel like the right option because his needs can change from week to week. Lately we've been having some success with the Headmaster and Theraband in combination. The elastic helps to take a little pressure off the jaw. It works quite well, even if it's a little Heath Robinson! I bought a mouthguard from Amazon and tried fitting it to his upper teeth...maybe we'd have better luck with the bottom ones - hadn't even occurred to me. Thanks!

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          #5
          You are absolutely correct DPcarer There likely is not a permanent collar solution, I am on my 5th type of collar - collar specs had to keep up with my neck's progressive weakening xx
          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          โ€‹

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            #6
            I've given up with collars, head down to the left side is my go to position, it's surprisingly comfortable! ๐Ÿ˜€๐Ÿ˜๐Ÿ˜๐Ÿ˜˜xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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