Neck collar

[LouiseRaymakers]

Can anyone help with suggestions for a neck collar? I am finding it difficult to keep my head up at times when I don’t have back support, e.g. toilet, shower chair. I basically end up doubled over. I have asked a couple of medical people but I’m not getting any solutions.

[Claireflo]

Hi, do you have a physio that can assess you? My dad's head drops forward anytime he's not reclined and has started leaning to the right. The physio gave him a soft foam collar first, he didn't like that as it went around his throat so he tried one similar to a headmasters collar which he preferred but as his muscles weakened he needed more support so now has an Aspen Vista. It's not great as he feels a bit like he's in a headlock (although a bit better now we've cut a bit off the top at the back).

He's been seen by orthotics and waiting to go back for a new collar but I think it'll be pretty much the same as what he already has.

[Claireflo]

[Ellie]

A warm welcome to the forum Louise.

Don't you have an OT or Physiotherapist in the community or through your Neurologist/Clinic? Getting the most suitable collar can be trial and error and can change every few months. I'm on my 6th different type of collar.

I am finding it difficult to keep my head up at times when I don’t have back support, e.g. toilet, shower chair.

Maybe a shower chair with a tilt and recline function would solve this problem, again, contact your OT.

Love Ellie xx

[Wailywoo]

I am hesitant to post this. I look on here often and don't tend to make comments or replies, but I have recently re-discovered my husband's neck collar which he literally only wore from the hospital to home, which is about 5 minutes away, and maybe only tried it on after that. It was put back in its box years ago. I did ask if anyone was interested after he died in 2019, but there were no takers. It is one of the TaylarMade Headup Collars. See - HeadUp Collar - TalarMade I am willing to post to anyone who might find it useful. I am clearing out some of his things, taken me a long time I know.... but it is time... No charge - literally no charge I will even pay postage if it helps someone. I will look on here to see if any one is interested. I may not log in often, but I do look and think of everyone on here often.

[Claireflo]

That's a kind offer, I've seen that style but my dad struggles with the ones that are all the way round including his throat so he's preferring the style that's open at the throat currently.

I'm sure sorting through your husbands things is a difficult thing to do and something to be done at the time that's right, no matter how long.

[LouiseRaymakers]

I am hesitant to post this. I look on here often and don't tend to make comments or replies, but I have recently re-discovered my husband's neck collar which he literally only wore from the hospital to home, which is about 5 minutes away, and maybe only tried it on after that. It was put back in its box years ago. I did ask if anyone was interested after he died in 2019, but there were no takers. It is one of the TaylarMade Headup Collars. See - HeadUp Collar - TalarMade I am willing to post to anyone who might find it useful. I am clearing out some of his things, taken me a long time I know.... but it is time... No charge - literally no charge I will even pay postage if it helps someone. I will look on here to see if any one is interested. I may not log in often, but I do look and think of everyone on here often.

Thank you, very kind. Would you email me at [email protected] please?

[LouiseRaymakers]

A warm welcome to the forum Louise.

Don't you have an OT or Physiotherapist in the community or through your Neurologist/Clinic? Getting the most suitable collar can be trial and error and can change every few months. I'm on my 6th different type of collar.



Maybe a shower chair with a tilt and recline function would solve this problem, again, contact your OT.

Love Ellie xx

i have asked them both, Ellie, and not exhausted enquiries. Seeing so many different collars I just thought posting on here might cut through the process and there’s nothing like fellow MND sufferers to provide meaningful help! I was hoping for suggestions that I just wouldn’t have known about and the reclining shower chair is just that so thank you very much. Louise x

[John D]

I have tried a number of collars. At times I use the Headmaster supplied by hospice physio - middle photo above. It doesn’t hold my head up particularly high but stops my head bobbing about.

My hospice palliative Consultant referred me to my local hospital’s Orthotics department. The appointment took a while to come through. They gave me a Hesingercollar that wraps around the neck but is open at the front.



I was also measured for a Head Up Brace which I was given last week. https://beagleorthopaedic.com/product/head-up-brace.



The tight headband certainly pulls my head back and the back brace keeps my spine straight and improves my posture when walking. I was told to wear it for half an hour twice a day for 2 weeks to get used to it which I am trying to do. I wear it with the Hesinger Collar. Looks like a medieval torture instrument but I think and hope this is the answer for me.

[Ellie]

LouiseRaymakers If you do get the HeadUp collar which Wailywoo kindly offered, do let us know if your physiotherapist can set the supports for you or if it's a DIY job. It comes with different types of supports, like stays, which are Velcroed on to the collar according to where support is most needed - it's highly customisable.

I wore one for 2+ years and found it did the job well for that period. xx

[Ellie]

At times I use the Headmaster supplied by hospice physio .... It doesn’t hold my head up particularly high

Forgive me if you know this already John but the under jaw part of the Headmaster collar can be stretched open to make it higher - it made a big difference to me xx

[JamesW]

Forgive me if you know this already John but the under jaw part of the Headmaster collar can be stretched open to make it higher - it made a big difference to me xx

Absolutely 👍mine also came with different strengths of supports…..the weaker one still allows quite a bit of movement and ’bounce’ whereas the stronger one holds your head up more rigidly.

[Ellie]

... mine also came with different strengths of supports…..

With the Headmaster ?? It's frame is tubular steel, how did they work 🤔

(Are you thinking of the HeadUp maybe?)

[JamesW]

Ellie Lol…yes I’m thinking of my Headup collar…. so glad I’ve got you on here looking after me 👍🤣