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Trevorhb
19th January 2015, 19:45
the latest symptom to add to my list is head drop, forcing me to wear a collar when on my feet. Anyone else got that?

Terry
19th January 2015, 19:58
it is quite common i'm afraid trevor;

Trevorhb
19th January 2015, 20:15
I am in Papworth at the moment Terry, here for a overnight stay to sort my breathing and drooling.

Artmart
19th January 2015, 21:08
Hi Trevor

I ran into neck problems early on and have been using a rigid collar since June last year. I found it a real "pain in the neck" to start with but now I can't do without it through most of the day. You will get used to it.

Hope all goes well at Papworth.

Arthur

Terry
19th January 2015, 21:54
Hope you have a good stay Trevor;

Say hello to Michael Davis for me. I really valve his advice, great respect for him. I'm at Addenbrooks this week and hope to be at the Norfolk meeting on the first.

Love Terry

Steve
20th January 2015, 12:43
yep, I am a member of this club as well. I use a solid collar or recline in my chair.

Trevorhb
20th January 2015, 14:31
They have given me a strange collar made in Canada. It is simply a tube which goes under the chin and then forms a loop down on to the chest. You then wrap a padded belt round the back of the neck attaching the tube at each side with Velcro. Simple but it works.

Steve
20th January 2015, 15:37
is it called the headmasters (mistress?) collar? I tried something similar but it was furry and my stubble caught in it. I have a hard plastic one now with foam padding. The only problem is the foam gets damp if I drool so we stick a flanel over the front.

Trevorhb
20th January 2015, 15:43
It could be, I have the same trouble with drooling and am in Papworth Hospital at present and they hope to sort that out.

Ellie
20th January 2015, 16:07
Trevor, what medication are you trying for the saliva?
Ellie.

Trevorhb
20th January 2015, 16:33
Propantheline I think it is called. You just have to watch the side effects with all these drugs.

Ellie
20th January 2015, 16:39
Good luck with it Trevor.

Steve
20th January 2015, 16:40
I found all the meds for secretions really dry out my eyes and make my forehead and face really greasy, like it blocks all my pores.

The Hyacine patches knocked me sideways.

Trevorhb
20th January 2015, 16:41
I will try and keep you all posted whether it is effective.

GrannieAnnie
20th January 2015, 17:40
Trevor when you are able perhaps you could share on the Forum what they are giving you in Papworth as I think many of us in the same boat would like to know. Do hope it is being of help to you and you are feeling ok. Ann

Trevorhb
20th January 2015, 17:47
They are keeping me in an extra night so they can adjust the dose. Their physio is contacting my specialist nurse to see if they can speed up the delivery of a suction machine, been waiting for 7 weeks. They keep saying "is there anything else we can help you with", they are really trying hard.

Springtime
20th January 2015, 17:51
Hi Trevor,
Thought they may keep you in an extra night or so, as the settings for Bipap need to be right for you. I am really hoping they sort the drooling out for you also. How are you sleeping? And, how is Nettie? Springtime x

Trevorhb
20th January 2015, 19:00
Nettie is fine, they found a fold up bed for her, she has a recliner during the day. My CO2 level at night is not bad, so the Nippy has not got be used much. It is the drooling which is my biggest problem and that is what they want to sort.

Night walker
21st January 2015, 07:33
Hope you have a good stay Trevor;

Say hello to Michael Davis for me. I really valve his advice, great respect for him. I'm at Addenbrooks this week and hope to be at the Norfolk meeting on the first.

Love Terry

Hi Terry
Your reputation at Addenbrookes precedes you. Joanne and victoria both told me you were due a visit to them. They are both looking forward to seeing you. I believe you have them wrapped round your little finger .... you Tiger!
Hope you have a good visit.
Sylv x

Trevorhb
21st January 2015, 09:52
Hopefully our last day at Papworth. They could not be more helpful, but we just want to go home.

Trevorhb
21st January 2015, 11:45
I have been discharged from Papworth RSSC, back in 2 weeks to check progress.

GrannieAnnie
21st January 2015, 11:53
Good luck Trevor I do hope it does the trick. Thanks for sharing the name with us. We await progress!! A

Trevorhb
24th January 2015, 12:27
This morning I was sorting through some papers without the collar on, silly me. I now cannot lift my head up enough to get it on. I normally only wear it when up an about, not when I am in my recliner, but should I wear it most of the time?

Terry
24th January 2015, 12:34
I think that you know best Trevor;

Maybe a loose foam one would be OK in a chair but if Nettie's around and it does not harm you does it matter.

Love Terry

PS:- My comment may be read in two ways, If it hurts then it is harming you and it does matter.

Trevorhb
24th January 2015, 12:47
Yes it does matter Terry because it is causing me pain and discomfort.

Ellie
24th January 2015, 15:40
Hi Trevor,
Have you a heat pack you can put on your neck to ease the pain? Your muscles might be in spasm.
If you need to support the head, wear the collar as often as you can to avoid getting pain. If it is the Headmaster collar you have, make sure the chin rest is extended upwards so your chin is properly supported. It can be difficult to swallow even a little tablet whilst wearing a collar, so best to take it off if necessary.
Ellie.

Trevorhb
24th January 2015, 15:55
Thanks Ellie, you have been so helpful.

Alig2014
25th January 2015, 00:08
Hi Trevor, if Nettie doesn't mind massaging neck might help. I used to stand behind Jean and lift her chin with one hand and massage. Then put other hand on forehead to support and get her to look left and right very slowly for a few minutes to just loosen it up a bit. You could also try muscle rub.

Alison x

Trevorhb
19th February 2015, 12:13
More kindness from a forum member. Candle has sent me a neck pillow to help support my neck when resting. Thank you so much Lorraine.

Terry
20th October 2015, 22:38
Hi;

I was talking to Arthur a couple of days back at a Norfolk Mnda meeting and he now uses a "Trulite" Model airflow neck support size medium. He finds the leather trim ones are the best as they last longer and are more comfortable. They are a simple collar with a small amount of frontal adjustment. His team provided it in the hospital.

Love Terry

Blossom
3rd November 2015, 20:54
Hi Trevor, Hyoscine patches work quite well. My wife is now using Buscopan for spasms in the gullet which can be quite painful. Buscopan contains Hyoscine so we were able to knock off the patches, which made life a bit simpler.

My blog at mndexperience.blogspot.co.uk

Terry
3rd November 2015, 21:40
Hi Blossom;

I'm afraid that Trevor left us in April this year. He was a good friend to me and others here.

Love Terry

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