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Thread: Sheffield support snood/neck brace

  1. #1
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    Sheffield support snood/neck brace

    Have seen information about this on the internet,is anyone taking part in this trial and how do you find it. I have asked if I can get one of these for my father but seems there may be a years wait before they are generally available. He tried a neck brace yesterday which was a bit of a joke,made out of wire with a flat platform for his chin to rest on,more than uncomfortable it did not seem any better than a fixed collar.looking on forum it seems this is a common problem among MND sufferers. I have seen a neck brace from bac<pain help.com which I might try on him,anyone tried this?
    I was also looking at a simple device like a roll or tube to just go under his chin to keep his head up.
    Any suggestions welcome.
    Have a good day
    Ray

  2. #2
    Forum Member Dude's Avatar
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    Hi Ray OT supply sponge neck collars with Velcro fastener. Is this suitable. Dude

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    No they are too soft I think and bulky, my idea is a toilet roll in stocking net tied under his chin but possibly tooooo low tech, well you have to laugh or you would spen all your time crying.
    Have seen a Neck Brace from a company called Bac<painhelp.com which I may try.
    It's frustrating because my nature is to look for a simple alternative to a problem and then evolve the idea along.
    Good job dad puts up with me .

  4. #4
    Forum Member Terry's Avatar
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    Hi Ray;

    Like what Dude wears, I've heard that a sponge velcro collar takes some beating. I know of others that use a ridged collar successfully but I wonder how they get on swallowing as I need my chin down to swallow.

    Like the toilet roll idea as you can shape them and get different lengths, if you had a really long neck you could use a kitchen roll, (sorry).

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #5
    Forum Member Dude's Avatar
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    Ray Taking on board what Terry says about swallowing, you do need some movement for swallowing so Rigid would not work for mne. I don';t wear a collar but I have done and found it restrictive but does the job. It was also hot so maybe cut some holes in. Try one. Does Dad need one all the time and is it just to stop his head dropping forward. Nothing wrong with low-tech. Keep up the good work. You are an angel. Dude

  6. #6
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    Hi Ray,
    You can get the sponge type as well as a more rigid collar called Med Airflow collar which you can adjust. They are supplied from the NHS after you get a refereal from your GP or another doctor in your support team. You can swallow a bit with them but would you not take them off to eat then put them back on to help support the neck muscles.
    Regards
    John

  7. #7
    Forum Member Ellie's Avatar
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    Hi Ray,
    I wear the Headmaster Collar for a few hours most days with padding to protect my clavicles (which were marking) Have you extended the metal bar to fit snugly under dad’s chin?
    I had a look at the video of that Bac> Brace and to me, it doesn’t look any more comfortable than the Headmaster Collar. If your dad has weakened neck muscles, the full weight of his head will be taken by the narrow bit under the chin, which, imo, wouldn’t be comfortable without padding. “Normal” neck muscles support the weight of one’s head.
    I did like the look of it and, as it’s not too expensive, you could buy it and try DIY padding! The website has a Live Chat facility, so get their opinion too.

    Good luck,
    Ellie.

  8. #8
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    Hello Ray. I suspect that many of us are hopeful of getting a Sheffield snood, as the products currently available do not fully meet the needs of those of us with weak neck muscles resulting in head droop. I attend the Sheffield clinic and will ask about progress on my next visit in early September. My understanding was that about 100 were being made with financial support from the MNDA, but that no full scale production is anticipated for some time. I have a Headmaster collar, which sounds similar to the one you mentioned. Very uncomfortable over more than a few minutes. I also have a Vista support, but again it doesn't really do the job and is primarily for people in a prone position whereas I need help when standing. I have been referred to the Orthotics Dept at Sheffield and am going next week so will see if they can help. Soft sponge type applications don't work when the neck muscles have packed up. Will let you know how I get on after my appointment. Best wishes. Philip

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    Forum Member Dude's Avatar
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  10. #10
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    I purchased "neck sofa" from the USA. It cost over 100 by the time it was sent but worked well as you can wear it lots of different ways. I sent it to another MND sufferer and I believe he too found it useful.

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