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Cookewitch
25th January 2014, 18:04
I'm sure there has been threads on this before but I thought I'd ask in a fresh thread.

I've noticed over the last two or three days that Dad's head is leaning to the left like it's too heavy for him to hold it up. It then makes his whole torso slump in that direction which can be uncomfortable for him. I would imagine that his neck muscles are starting to waste too and I need to start getting information on neck supports available.

Does anyone have any pearls of wisdom on what works for them?

john
25th January 2014, 19:02
Hi C W,

For Irene we tried quite a few that the physio brought along but the one she found least intrusive was the 5 foam collars available from the chemist which she wore all the time she was not in bed. We used a crepe bandage to make a shape at the front for her chin to sit in . No soreness chafing or intrusiveness.

John

Cookewitch
25th January 2014, 19:34
I think I might give that a go in the first instance as I think Dad isn't going to like whatever I come up with....plus I would imagine he might find that type easier to take off when he's had enough!

Barry52
26th January 2014, 13:48
Hi Cookewitch,
I met with a fellow MND patient who is trialling a newly designed collar which is lightweight, easy to fit and more to the point comfortable and effective. The collar is designed by Dr Christopher McDermott who is based at the Sheffield Hallamshire Hospital where I attend. The hospital has a research centre attached called SITRAN and if you google it (other search engines are available) you will find details of the work they do to improve the quality of life for patients.
I will send you a PM containing a file with info on the collar. Other hospitals throughout the UK are also involved with the trial which has recently received funding.
Best wishes
Barry

Mal.
26th January 2014, 14:00
Lynne, my wife found that she was having difficulty holding her head upright several weeks ago. She was supplied with a soft collar which she wears occasionally. However we have found that a couple of goose down pillows behind her head works best and is more comfortable. Her head sinks into the pillows and they can be plumped up at the side of her head to prevent her head rolling. Man made fibre pillows are not as good as they tend to go flat and don;t "plump up" so well around the head.

Cookewitch
26th January 2014, 14:28
Thanks Barry.

Cookewitch
26th January 2014, 14:35
Thanks Mal, the pillows work in bed but Dad refuses to have one behind him in the chair.....I think he likes being difficult sometimes!

ccvsd
26th January 2014, 15:53
Cookewitch, we've got to assert our personality somehow!

I tried to hide from hubby last night. He put me to bed, so, being limited in options for hiding places, I tried to make myself as flat as possible and pulled the duvet over my head.

He found me within 2 seconds and I don't think my giggling gave me away either.


Grumbling is quite gratifying too, but I think it upsets hubby (can't think why) so I save that for special occasions only.

x

berdbrain
26th January 2014, 16:25
I got one of those soft airline neck pillows, and that was quite a good and inexpensive solution...but I guess a temporary one...it's got to be quite stuffed because you can get them in Tiger for 3 but they are not stuffed enough!!!!
Good luck
DebbieXXXX

Cookewitch
26th January 2014, 16:57
Oh I know Dad enjoys being difficult as when I mentioned to the carers about him being awkward with his eye drops he started laughing.....cheeky bugger :)

Panda
26th January 2014, 19:25
http://www.necksolutions.com/headmaster-collar.html263

This is what dad was supplied with in grey to put on when travelling in the wheelchair in the back of the pope-mobile and he wouldn't give it house room to start with.
It came with a section of crepe tube bandage to cover the chin piece (for protection from drooling) dangling loose for 10 inches - his main objection - he said "I look like bl@@dy Tutankahmun in this!"
He is not drooling so bandage off and on it went.
Now he loves it and on a cold day with the collar up on his jacket and a light scarf you would never know it was there.
The design is to leave the airways free of pressure but it does inhibit eating.
The link is to an American site but it's the same device.
I know this may not be suitable for everyone but it is very stable and can be adjusted to a comfortable fit. P

Cath51
27th January 2014, 08:53
Mic has the headmaster collar which was supplied by the OT at Salford Royal. He wears it when transferring from bed to wheelchair or wheelchair to recliner and also when out and about but like Panda's Dad it comes straight off when we get to the pub so he can get at his Tetley bitter (through a metal straw) without any impediment :)

Panda
27th January 2014, 20:30
Cath - I like the idea of the metal straw as the pint of Guinness dropped to a half as dad lost strength in his left arm.

I assume it stops crush and still maintains a bit of "bloke cred".:rolleyes: P

Pedr0
28th January 2014, 00:34
Hi,
My MND started at the neck and is working down, so at the moment I use a headmaster collar which was supplied by the OT at my local hospital, I use it for supporting my head when I get tired usually when watching the telly in the evening. I have worn it to go out and is quite unobtrusive, I find it very good but it does obviuosly limit where you can see. I tend to take it off to use the computer or read, when travelling I prefer to use a travel pillow.
Personally after trying various types of travel pillows I liked the memory foam travel pillow the best and most comfortable.

Regards Peter

Cath51
28th January 2014, 08:53
Hi Panda, the metal straws have been a godsend, Mic uses them to drink his coffee at home and also for his bitter in the pub. I got them from eco-straws as a pack with two cleaning brushes. The only problem now is they are not quite long enough as the table we sit at is a bit low and he finds leaning forward a bit tiring so we use the plastic straws they have in the pub inserted into the metal straw that stays stable in the glass and are long enough for him to reach easily - sorted! It's amazing how inventive you can become when needs must ;)

Son392
6th March 2014, 21:46
Hi,

I still have a headmaster collar that is free to a good home, if anyone wants it just send me you address to :

sonya@phillipssonya392.orangehome.co.uk

I don't go on the forum very often anymore so better to email. It's only been tried on, not worn. x

Thanks

Sonya

Campion
17th March 2014, 23:21
What-ho Chaps and Chappettes,

The loved one had all sorts of discomfort with the many neck supports we've been offered in the past, so I did a quick whip around the interwebs (very quick in fact) and I found this.

http://www.ebay.co.uk/itm/Inflatable-Neck-Traction-Support-Collar-Brace-for-Neck-Cervical-Pain-/300963457827?pt=UK_Health_Beauty_Mobility_Disabili ty_Medical_ET&hash=item4612d1eb23

Seems to work for my loved one like an absolute charm, so I thought I should pop along and give everyone else a heads up too (yes, I only popped in to make that terrible pun :cool:).

Please note that it is of no use when in a recliner as the back extends quite heavily rearward, although I suppose the air could be released to compensate. It also makes you look a bit like a dalek when wearing it, so keep that in mind if you or your loved one are somewhat fashion conscious (although I suppose it is a plus if the intended recipient is a big Whovian).



Pip-pip!
Campion.

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