Sorry if I’ve selected the wrong category to post this in - I wasn’t sure.
My mum has Secondary Progressive MS. She’s suffered for over 30 yrs now, but recently it’s reached a new level of destruction.
She has been in a nursing home for the last year as her care needs became just too much to sensibly remain at home. Whilst she appears happy there, she’s mostly in her own wee world these days - it breaks my heart every time I visit.
One big issue we now have, which has become more apparent over the last few weeks is that her core and in particular neck muscles have lost any strength which leaves her head falling to the left hand side almost so her ear is on her shoulder. It’s worse when she’s in her wheelchair obviously, but also happens when she’s lying in bed propped up on pillows (particularly when she’s tired).
Obviously there are many many implications for this, her speech is suffering, her swallow is suffering, eye contact and conversation is becoming difficult and something as simple as entertaining herself by watching TV near impossible at times.
I have been trying to find some solution to help. I have tried her with a foam travel pillow but she just pulls it off. I’d like to find something which is both comfortable and effective. I’m conscious there are many many different kinds of standard foam neck braces, but not sure if that’s the best route to go down and don’t know where I could get something like that on loan to try it out.
We also use pillows propped on her shoulder when she’s in her wheelchair to try and support her but again, haven’t found something that works without just falling away.
If anyone has any suggestions at all, I’d be very very grateful.
(a loving and lost at what to do for the best daughter!)