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Carers, things that have helped Share your experiences of caring, and pass on practical advice and helpful tips

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Old 20-11-17, 05:18 PM   #1
battersea
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Join Date: Aug 2010
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Default bad chest

Hi
I haven't been on here for a very long time. Not been a good time and been feeling a bit anti, then my daughter was tested positive in July which has been tough.
My husband is heading for the later stages of the disease now and the last year he has been suffering with chest congestion, difficulty with breathing etc.He has had chest xrays, anti biotics and then given patches because they feel it is excess saliva, trouble with these are they make him so dry he finds it even harder to eat.
Have any of you got any ideas how I can help him, he sleeps with one of the special pillows so he is slanted which has helped a bit. Should he be struggling like this? I was told that he shouldn't be in any discomfort but when I try and ask what I can do to help I get no answers. I am increasingly feeling I am banging my head against a brick wall.
This is my first experience with HD, so not sure what's "normal" and whats not
xx
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Old 20-11-17, 07:06 PM   #2
Trish
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Default Re: bad chest

Quote:
Originally Posted by battersea View Post
Hi
I haven't been on here for a very long time. Not been a good time and been feeling a bit anti, then my daughter was tested positive in July which has been tough.
My husband is heading for the later stages of the disease now and the last year he has been suffering with chest congestion, difficulty with breathing etc.He has had chest xrays, anti biotics and then given patches because they feel it is excess saliva, trouble with these are they make him so dry he finds it even harder to eat.
Have any of you got any ideas how I can help him, he sleeps with one of the special pillows so he is slanted which has helped a bit. Should he be struggling like this? I was told that he shouldn't be in any discomfort but when I try and ask what I can do to help I get no answers. I am increasingly feeling I am banging my head against a brick wall.
This is my first experience with HD, so not sure what's "normal" and whats not
xx

Sorry to hear things are progressing. Sounds like you are all going through a tough time right now.

It's impossible to answer the question about struggling from my part because I know Steve struggled in ways you describe but that was over 6 years ago so I am hoping there could be more answers and aids out there by now. I feel your pain when you say banging your head but keep banging away as hopefully the wall may breach at some point.

I do know that I was surprised when one of the professionals mentioned although Steve was prescribed one patch at a time it was okay to cut the patches into a half or even a quarter and that would help stop the full on dry mouth a bit. It was more a game of trial and error but I did reduce the doses at times.

The other thing I did was buy some foam pral swabs on line. I got these from this company ( CLICKY HERE ). I am supposed to say 'other brands are available' at this stage. What I can say is when Steve's dental nurse saw them she praised me for making sure to get the professional supply ones and not the cheaper pink small foam ones on-line as the foam can come off easy on those ones and cause a choking hazard so I tend to recommend the ones I know.

The swabs helped in 2 ways. One to help get out excess moisture/food gunk and the other was when I would immerse in water an placed in the side of Steve's mouth to squeeze in a little hydration.

Not sure what else I can say right now but if I think of anything I will pop back in.

Thinking of you guys xxx
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