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Mal.
17th September 2013, 17:52
The muscles in my wife's neck have recently started to become weaker. When she is laid in bed (because of the MND she has no use of her arms or legs and therefore lays on her back) after a little while her head will roll to the left on her pillow. She has now developed a small pressure sore on her left ear. Cavlon whilst preventing it from getting worse is not healing the sore.
She had an appointment with the Consultant and Clinical Specialist Nurse a week or so ago when we mentioned this problem. No solution or suggestion was forthcoming. The clinical specialist nurse made a routine visit today when again we mentioned the problem. Although the nurse said she would make enquiries and talk with the Neurology Dept at John Radcliffe, this will all take time and I'm rather keen that my wife's discomfort is resolved sooner rather than later.
Has anyone any experience of pressure sores on ears or any suggestions regarding pressure relief PILLOWS. (If there is such a thing).

Terry
17th September 2013, 18:36
Hi Mal;

Welcome to the forum and it is nice to see you contributing already. I have no experience with this but I have heard of people padding around the head when in a reclining chair. I wonder if a piece of foam could be cut and covered to keep her head straight so their is not so much pressure on her ears. This wouldn't be much good if she moves her body though.

I'm sure that someone else will say something better or maybe where to buy one from.

Good luck, Terry

berdbrain
17th September 2013, 19:36
Hi Mal, sorry you have to be here, but I would suggest calling MND Direct ...they are a wonderful sources of advice.
As for the weakening neck, I got a lovely soft neck pillow (like 1 you use when on an airplane, nice and soft veloury material) and this helped greatly, for my sister. For the sore, foam is a good idea maybe experimenting with nice soft cotton wool balls or the foam people get for their corns......I know that's what someone suggested to me, it's a matter of being a bit of an inventor and trying different things....but MND Direct as I said are also a great source of advice and nothing is too small to ask them.
Good luck
XXXXDebbieXXXX

john
18th September 2013, 00:29
Hi Mal and welcome to the forum.
My wife also laid on her back in bed and had no use of her arms and legs and weak neck muscles. We had soft feather pillows which were puffed up daily and supported her head by allowing a hollow to form when her head was laid down which cradled her in the same position all night. She did at one time develop pressure sores from sitting and to avoid this we got a seat cushion attached to a small air pump which created an undulating effect under her so the pressure point was constantly moving and no further sores developed.
We applied Sudocrem to the sores which cleared quickly. I think it is a barrier cream used for babies with nappies originally but it is available from chemists without prescription and maybe on prescription if your wife gets these free as she should.

John

Mal.
18th September 2013, 08:01
Thanks for the advise guys. I will certainly invest in a feather pillow for the wife, whilst I'm not totally convinced it will prevent her head from rolling to the side, it kinda makes sense - and so it just might work. Even so a feather pillow is likely to be softer than a man made fibre one. As also suggested, I have also emailed MNDConnect for any advise they may have.
Thanks again guys.

Ellie
18th September 2013, 12:21
Hi Mal,
I'm in the same position as your wife and I use a memory foam pillow. It's not pressure relieving but it really supports my neck and stops my head lolling around and sinking into the pillow. It did take a few nights to get used to it.
By the way, does your wife have an air mattress?
Ellie.

Mal.
18th September 2013, 17:14
Thanks for the suggestion Ellie, may give that a try also. Yes she does have an air mattress which plugs into the electric and kinda vibrates.

berdbrain
19th September 2013, 17:58
Phone MND Connect....you will be glad you did Mal, just write down what you want to ask and ask away, they are the nicest bunch of people and specialists in MND and 'tricks of the trade' so to speak
XXXXXXXXDebbieXXXXXXXXXXX

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