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  • Claireflo
    replied
    Thanks Ellie fir your experience of the heads up collar. It's the part that 'hugs' the throat that I don't think he would like. The physio is referring him to the orthorists (if I've spelt that correct) to look at options for him.

    I saw the 'coat hanger' option when I was gpogling on the weekend, it also made me laugh.

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  • TinyLady
    replied
    Well spotted Ellie 🀣🀣🀣

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  • Ellie
    replied
    TinyLady You're looking for a Blue Peter badge, aren't you 😏😘

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  • MMG
    replied
    We are "between" collars at the moment. Hubbies neck is now weak and leans to one side due to shortening of the muscles, despite physio.

    He had a head mouse so there was a difficulty in getting a collar that would provide sufficient "easy" movement to control head mouse.

    He now has eye gaze so we are due a visit to orthotics for something firmer as he doesn't need to move his head as freely now.

    He does complain of neck pain and OT said that heads are heavy on weak muscles. Hopefully we will get a good neck bracelet soon.

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  • TinyLady
    replied
    I'm wondering if the neck collar Elliehas found will be strong enough to keep me upright. I wonder if I could make one from some old knickers and a coat hanger... bit of sticky back plastic too and a pipe cleaner 🀣

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  • Ellie
    replied
    Heather R Hope you get on with that Aspen, Heather 🀞🀞 Let us know xx

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  • Heather R
    replied
    Suspended from a curtain hanger! I have tried some collars but not got on with them. Have just been sent Austen vista though to try. I have been relying on tip back chairs to support my head. Appreciate learning about others experience with collars xx

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  • Hope
    replied
    Ellie that is hilarious, I want one 🀣

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  • Ellie
    replied
    I came across this contraption online and thought it would give us a laugh...

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  • Ellie
    replied
    Originally posted by Tabbycat View Post
    Tilt-in -Space-Wheelchairs are also available.
    Of note: powerchairs supplied to people with an MND sould have tilt in space feature included as standard, in fact there is an enhanced basic spec on a special 'Powered Neuro Wheelchair', thanks to work by the MNDA. xx

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  • Ellie
    replied
    Originally posted by Claireflo View Post
    Has anyone tried the Heads Up Collar which has been designed by Sheffield Uni with people who have MND? ​​​
    Yes, the Sheffield Snood/HeadUp Collar is one of the many different collars I've worn. As with all collars, individual experiences can vary widely and it's the type of thing a user needs to wear for a few days to really evaluate, but here's my take on the HeadUp Collar:

    I was part of the clinical trial and wore it for 2+ years.

    Pros:
    • highly customisable - its stays/supports are placed where maximum support is needed so, in my case, extra stays were put on the left side of the collar (they are covered in Velcro, so are easy to move)
    • gives good support to the chin, which is where many collars fail
    • easy to put on and take off
    • comfortable on the collar bones, chin and neck
    Cons:
    • tends to 'hug' the throat, which may make some people feel claustrophobic and/or interfere with eating and drinking
    • the material is warm in the summer
    • there comes a point where it doesn't provide enough support, which is why I stopped using it
    Again, it's probably worth him giving it a try. xx

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  • Tabbycat
    replied
    WheelsOfSteel
    A tilt-in-space armchair is also useful in maintaining neck and head posture. It allows the muscle to rest in a good position and reduced muscle fatigue and pain.

    Ask for an Occupational Therapist assessment. Many areas supply these arm chairs through Social Services funded equipment stores (although as I have learnt from reading posts on this Forum, not all areas). Tilt-in -Space-Wheelchairs are also available.

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  • Tony
    replied
    Hi Eddie. Yes I do and it’s definitely related to muscle loss. I started wearing a neck brace (I’ve tried different types) none are particularly comfortable but do the job. However I find the best solution is to make sure my back is well supported. Since using a wheelchair when I’m out,rather than walking any distance, I find I don’t need the neck brace. I’ve also been prescribed some pain relief gel although not needed it yet.

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  • Claireflo
    replied
    My Dad started having shoulder and back pain last November, in December he started using a foam collar but didn't like it as it went all around his neck and throat. Then he used one like a headmasters collar but that soon wasn't strong enough.

    He's been using the aspen vista for several months now but it's got very uncomfortable as his neck muscles weaken. He now has a lean to the right as well as his head dropping forward. I've just asked the physio to do another assessment as he's spending more time in bed due to being increasingly uncomfortable.

    I would be interested in any neck braces that anyone is using that they find relatively comfortable and very supportive. Has anyone tried the Heads Up Collar which has been designed by Sheffield Uni with people who have MND? It looks quite restrictive and like it won't provide enough support for what Dad needs but it has got generally good reviews so interested in anyone's experience of using it.
    Thanks
    ​​​​​
    ​​​​​​
    ​​​

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  • Piglet
    replied
    Ellie yes thanks Ellie. I think I do need to contact our O T. We don’t have a physio but I’m sure. Our O T can refer.xx

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