Hello,
My mum has Primary Progressive MS. She’s suffered for over 30yrs now, but recently it’s reached a new level of destruction. We are struggling to help her as well as we’d like and it’s heartbreaking. One big issue we now have is that my mother’s neck muscles have completely lost any strength which leaves her head falling into her chest. There are many many implications for this, her speech is suffering, her swallow is suffering, she finds even harder to feed herself, eye contact and conversation is becoming difficult and something as simple as entertaining herself by watching TV near impossible. I have been trying to find some solution to help. We have tried many many different kinds of standard foam neck braces, but these don’t offer the amount of support required. We also use pillows propped up under her chin to try and support her but again, haven’t found something that’s both comfortable and effective. I was wondering if anyone is aware of any neck support systems that might be a bit diferent to the norm (because chances are we’ve tried if not). We were wondering if need to approach this from the chest so to speak? i.e. find something that could sit on her chest that her chin can rest on that lifts her head to a normal height? Does such a thing exist?
If anyone has any suggestions at all, we’d all be very very grateful.
Kind regards, Lisa
a loving and lost at what to do for the best daughter!
Hi
I can see from your message you are a very loving daughter, I do hope you find something which will help your mum.
I know nothing personally about neck supports but i could see nobody had replied, so I thought i would have a look for you and found this http://www.completecareshop.co.uk/orthopaedic-aids/head-and-neck-supports/headmaster-collar-large/ its a headmaster coller with some support from the chest. On another site it does recommend use with MS/Motor neuron etc so fingers crossed just what your looking for.
I hope this is some help for you
Carla x
Hi Lisa, I am very sorry, but I have only just seen your post.
If you havent already solved the probem for your dear mum, then ask for an urgent referral for an OT`s assessmnt.
In my opinion OTs are wonderful bods…they always come up with a solution to my never ending problems…even to` it may take a while for things to come through.
luv Pollx
Experiencing similar problems myself with this problem. My mum also has alot of trouble holding her head up witch had lead to difficulty swallowing her jaw has dropped and cannot talk her head also falls down or to the side when she falls asleep. Are you and your family in touch with all the local service providers? I know we have a specialist team that come out and deal with any problems we might be facing ie chest specialists district nurses and social services. They do offer a neck braces although im unshure if its a regular neck brace or something designed for people with these type of problems.
I would try speaking to the professionals and see what advice they could give you 
Hello my dad also has primary progressive ms and was diagnosed 25 years ago. His ms has reached the worst syage now where his speech has deteariated ab awful lot. He cant keep his head up at all and his hands are clenched at all times. He has a neck support but it doesnt help and he has support for his hands but its not helping. We feel our ot isnt any help and just doesnt care. Can someone please help me on this matter. Jts the worst feeling in the world knowing you can do nothing to help the person you love the most
Hi Vicky,
I don’t know if you realised , but you’ve tagged onto an old post.
But I hope someone spots it and offers advice.
I’m very surprised and saddened to hear you’ve had no help from your OT.
The OTs I’ve had on many occasions have been a great help to me.
Pollsx
Hello,
I am writing as a patient and not as a “carer”. How can we not understand this kind of situation? I know I will be a burden. I am trying to smile and encourage my family … Finally, what I would like to say is that it is difficult for everyone. The only solution would be to put an end to life, but is that a good solution?
Gustavo Woltmann
Hi.
My mum has secondary progressive and is very very unwell. Along the way we suffered with issues with her neck it is very common and you guys are not alone!! I highly recomend in bed getting hold of a U cushion. Literally looks like a U. I think we got ours in John Lewis, an absolute life safer!! You need to get a good soft quality one not the cheap rubbish they sell for aeroplane journeys. Also for the wheelchair you need to get hold of whomeber supplied you with your wheelchair- we had ours custom made for my mum. Maybe start with an OT.
Good Luck xxxxxx