Neck support advice wanted

[SarahWP]

Evening all

My head now needs support some/most of the time and I’ve been given a foam supper by my physio but am finding it very restrictive- I can’t speak when wearing it (not without sounding like some kind of crazed zombie anyway!). :-)
My physio has also ordered a more specialised one with plastic “bones” in, which promises to be even more scary! So until I need something quite so rigid, I’m wondering about one that might be supportive but a tad more forgiving, such as a travel neck pillow - I’ve found a memory foam one with 360 degree support (a Cabeau Evolution Classic), for example. But before wasting my money, does anyone have advice and/or recommendations of specific ones I could try?

Thanks all!
Sarah

[Ellie]

Hi Sarah,

The collar on order for you sounds like the HeadUp (Sheffield Snood) which I have and absolutely love!! It’s not scary at all and for me anyway, is by far the best of the 5 I’ve worn over the years. I wear it for most of the day and find it very comfy.

The issue I have with that Cabeau collar is that whilst it says it’s 360°, I can’t see how it would provide support where you most need it, i.e. under your chin. Also, I can’t really tell by photos if the back of it is flat or bulky - bulky may cause issues with head position.
In the evening time I usually sit in my armchair and wear the BCozzy travel pillow. It differs from the Cabeau insofar as it crosses under the chin, giving my head support. I do need to secure one end with a hair bobbin to stop the cushion opening up. I cannot speak, so have no feedback for you re voice, but it doesn’t feel restrictive. (if you’re wondering why I don’t wear the Snood in the armchair, I find it pushes my head forward)

I I tighten it so my chin is fully supported and it stops my head drooping. Here’s a pic:





There are more rigid cervical collars, maybe ask your Physio if one would be suitable for you. (They aren’t expensive if you were to buy one.) And when the new collar arrives but doesn’t suit you, don’t despair, there are alternatives.

Good luck.

Love Ellie.

[SarahWP]

Ellie - you are my guru! Is there nothing you don’t know?! Thanks so much for this, it’s really helpful.

How have you adapted to not speaking? I think I’m approaching that myself. I keep trying to speak,,despite having a good text to speech app which uses my banked voice, but I get so tired trying to make myself understood. I just get impatient using the app.

Thanks again for the advice. Amazon order duly placed - I think I’m addicted! :-)

Sarah

[johnburton]

Hi Sarah,
I have recently had much the same problem. I bought a Sheffield Snood (as described by Ellie) but found it quite hard to configure. It comes with a set of plastic shapes, which you have to bend to fit with a hair dryer. Then you stick the ones you've chosen on the snood. I went through three sorts of shape before finding the one that worked. My head flops forward, so I need support under the chin. Inevitably, that impedes talking and eating to some extent. It works best if the snood is snug round the neck without slack.
The best solution I've found so far is a home made elastic band (two inches wide) attached to my wheelchair's head rest. The band goes over my forehead, keeping my head up, without impeding jaw movement.
John

[Ellie]

Sarah, I definitely don't know everything but I don't see the point not sharing the tips & tricks I've learned living with MND, in the hope they'll help somebody, somehow....

I guess I'd zero choice but to use an alternative way to communicate once I became unintelligble (there are some who'd say I always was ) My hands were not dextrous enough to type, so I used my PC to speak.

Of all my losses, speech is the toughest one by far, but I apply my 'adapt & conquer' philosophy to it and, although the PC voice doesn't sound like I did, it most definitely speaks my words !!

I found I could spell for a while after my speech went and, whilst not much use for a full blown conversation, it did get me out of many a sticky situation. Or breaking words up into syllables might work for you, for a while at least, as it requires less effort/breath/oomph.

Love Ellie.