ideas about head support

Primary progressive MS
1

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!

2

Hi Lisa. Sorry, I’ve only just noticed your post. Your mum’s situation must be very difficult. Is she in a wheelchair? I ask this as there are some very good head supports available that will attach to them, the provider of the chair could assess her needs. My recommendation is to get your mum’s Occupational Therapist and Physio involved, if she doesn’t have a physio her gp could get an urgent referral done but you can self refer for an OT in many areas. Your mum will need to be assessed as if she’s not supported adequately her breathing and swallowing could be compromised. Good Luck and I hope that helps a bit, she’s very lucky to have you x

Cath xx

3

Hi Lisa

I also get this, especially when tired, and between the physio and OT they found me a neck brace especially for people with ms. It sits on your chest with a cupped shape support for your chin to go in, and does up with velcro at the back.

Its called the headmaster, and whilst it does seem to help, I find I can only wear it for a time because it presses on my collar bone.

I do suggest you ask the Ot and physio though, as I would hate to suggest sometthing in case it is wrong for your Mum.

Hope this helsp, and I wish your Mum all the very best.

Pam x