View Full Version : More progression

20th December 2014, 10:32
last night I wore the pulse Oxymeter in preparation for my Papworth visit on Monday. I knew my breathing was getting bad, but was shocked to see twice in the night reading of only 90-91. It looks like assisted breathing for me is coming soon.
I am also getting a dull ache at the bottom of my neck and difficult in keeping my head up. Annette rang the physio who thinks we should see if our next appointment with the consultant can be brought forward so a collar can be provided.
Such is the fun of having bulbar MND.

20th December 2014, 10:40
Sorry to hear that Trevor;

Breathing machines aren't much fun but they normally improve the quality of day life.

It's worth trying a simple foam collar to help support the neck from the chemist, maybe your doctor will prescribe it,.

Love Terry

20th December 2014, 12:21
Sadden to read of your woes Trevor. I've no experience yet with neck braces or breathing machines, so I can't add anything to what Terry says. All the best Jock.

20th December 2014, 13:44
Likewise Trevor , I can 't add anymore to the Lads comments other than say the progress of the B' disease is very worrying, in whatever form it takes, but We all know how you feel.

Look after yourself.


20th December 2014, 15:42
Sorry to hear that Trevor;

Breathing machines aren't much fun but they normally improve the quality of day life.

It's worth trying a simple foam collar to help support the neck from the chemist, maybe your doctor will prescribe it,.

Love Terry

Hi Terry,
As most chemists and disability shops keep them in stock , it's not really worth bothering GPs ,when most chemists sell them for around a fiver.

20th December 2014, 15:45
I purchased several neck pillows for mum when she could no longer support her head. It was tricky getting the right support without too much pressure as she couldn't reposition it if it felt too constricting. Some foam filled ones are good but try it yourself before you buy. The memory foam ones tended to be too firm but the beaded too soft. Mum was bed bound and the neck pillows kept her comfortable.

20th December 2014, 15:56
we have bought on from a pharmacy for just 2.99

Nettie B
20th December 2014, 20:03
Unfortunately the one Trevor mentioned wasn't suitable. It supports his neck well but he can't swallow at all in it ... not even saliva. So back to square one. I might try "adapting" it a bit though.

20th December 2014, 20:27
Hi Nettie,
We used a foam collar and then a crepe bandage wrapped around at the front to compress where the chin went. Irene used no other neck support and found the foam one as adapted fine.

Nettie B
20th December 2014, 20:30
Thanks John. I'll have a go.

20th December 2014, 20:31
That's trouble with this bloody disease, you never know what's coming next. The past few weeks I have been having pain in my neck. I also noticed that in the evening when it's time for bed when I walk I am bent over as if my head is too heavy for my body to support.
I spoke to my physio about a neck brace and I will see her next Tuesday, but she told that if I wear it too much my muscles will get worse because they are not getting any exercise. Catch 22 again.

20th December 2014, 20:43
Don't tighten the bandage up too much Neetie;

I need my chin down to swallow so anything that solidly holds the neck in it's right position is unlikely to be much good.

So you're right again David, "Catch 22 again", Terry

21st December 2014, 12:25
Hi Trevor

I suggest you ask for a referral to Orthotics as they may be able to provide something that supports your head without impacting your jaw and swallowing. As you know I'm in a firm collar most of the time but I have to take it off for meals & drinks but I then need to support my head with my hand to get the postion right for a safe swallow. I use these times to also do some neck exercises to try to stop it seizing up. The joys of MND eh?

Hope you get something sorted out.

21st December 2014, 12:58
Hi Trevor,

Jean got a headmaster collar through orthotics and that was the only one they offer. I just had a chat with Jean and she said she would be happy for you to have it as she doesn't use it and only wore it once for half an hour. Now she has a tilt in space chair she has no use for it. If you message me your address I can post it to you.

Alison x

21st December 2014, 13:21
That's very kind of you Alison, private message has been sent.

21st December 2014, 13:25
I will try and post it tomorrow x

Alison x

21st December 2014, 13:31
Thanks Alison.

Trevor xx

21st December 2014, 17:48
Trevor I replied to your other private message, sorry I hadn't spotted it.

Alison x

22nd December 2014, 14:43
3 hours at Papworth today for a breathing assessment. As I had guessed, breathing is a lot worse and they have sent me home with a Nippy machine to try at night.

22nd December 2014, 15:07
Sorry to hear that Trevor.
Which type of mask did you get? And does it have a humidifier?

22nd December 2014, 15:25
I'm too sorry Trevor;

Don't expect to wear it all night at first, two hours would be a good start.

Good luck, Terry

22nd December 2014, 15:39
Thanks Terry, they have suggested I start by wearing it for periods during the day, I have it on at the moment. Annette was surprised how easily I can wear It, I told her that when I was in the reserve forces, I never had problems with gas masks, others used to struggle.

22nd December 2014, 17:28
Sorry to hear that Trevor.
Which type of mask did you get? And does it have a humidifier?

It is a Nippy 3 plus. Is the humidifier separate, if it is I have not got one. Have tried this afternoon wearing it for 1.5 hours, the only problem was drooling.

22nd December 2014, 17:35
Our respiratory nurse from Sheffield brought me the BIPAP machine over on trial but I found the air dried up my mouth so she very kindly drove over with a humidifier and that is much better. Ring Papworth and ask them if they will let you have one. I find it easy to wear in the day. I have never managed to get to sleep with it on but I do persevere! I sat with it on for about three hours when the family were out shopping today. (The humidifier is separate - just clips on to the end) Love Joycie

22nd December 2014, 18:25
Sorry to hear that Trevor but it will make things more comfortable for you.

I have posted the collar to you by special delivery so it will be with tomorrow by 1 o'clock.

Alison x

22nd December 2014, 20:36
Thanks Alison, appreciated.

Trevor xxx

23rd December 2014, 03:06
Is it a ventilator or a bi-pap? I looked it up and they stated the Nippy 3 Plus was a bi-pap. Or maybe they make ventilators and bi-pap.

((((((((((((((((((((((((((((((hugs)))))))))))))))) )))))))))


23rd December 2014, 10:24
To be honest I do not know what the difference is. The doctor told us that MND patients use a very low pressure simply to assist with their breathing. Patients with other problems use much higher pressure which actually takes over their breathing. As a trial I had it on for 1.5 hours yesterday afternoon and actually fell asleep.

23rd December 2014, 14:41
You might not know whether or not you need a humidifier Trevor, until you use it laying down and sleeping. If you find that your mouth feels like the Sahara desert, then you need one! As Joycie said, it’s a separate piece of kit, a water heater, which attaches to the hose.
Great that you are tolerating it so well.

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