Thick Saliva - Confused: My mum is in late... - PSP Association

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Thick Saliva - Confused

am2015 profile image
32 Replies

My mum is in late stages of this horrid illness. She has been on atropine drops which were working so well but now does not seem to be as effective. The build up of thick salvia is causing mum to cough for 15-20 minutes at a time. We're looking for a suction machine, but confused as to which one is the best. Any recommendations or advice would be great. We need to sort this asap as it is horrible to see her coughing this way, all we can do is watch.

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am2015
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32 Replies
easterncedar profile image
easterncedar

When the atropine ceased to work for my guy, the doctor prescribed glycopyrrolate, which worked like a charm. Such a relief. I only wish we had tried it earlier. That choking on gluey saliva is an awful torment, especially when the patient is so weak and finding it hard to eat. We also had a suction machine, which helped as well, although when the saliva was very constant the machine was sort of a torment, too. Wishing you and your family comfort, Ec

am2015 profile image
am2015 in reply toeasterncedar

Thanks Easterncedar we'll definitely try the glycopyrrolate first and see if that alleviates the problem. The suction machine is a final resort, because it is soo evasive. I have read so many of your posts over the years, I hope you are well and slowly building your life again xx

am2015 profile image
am2015 in reply toeasterncedar

Sorry, I forgot to ask what dose did you give?

easterncedar profile image
easterncedar in reply toam2015

Sorry, I don't remember. If I can find it later, I will let you know.

am2015 profile image
am2015 in reply toeasterncedar

Thanks I really appreciate it

easterncedar profile image
easterncedar in reply toam2015

Prescribed 2 1-mg tablets 3x a day, but he only had them morning and evening. He didn't live long enough for the effect to wear off. I am so glad he wasn't choking that last fortnight, or so.

am2015 profile image
am2015 in reply toeasterncedar

Thank you so much. I'm so sorry that you and everyone has/had to go through this debilitating illness xx

am2015 profile image
am2015 in reply toeasterncedar

I looked into the glycopyrrolate, the cost is absolutely shocking. £750 per month. We'll need to pass and look at Botox injections unfortunately. Thanks anyway for your advice.

easterncedar profile image
easterncedar in reply toam2015

Heavens! I had no idea. Insurance covered it and no questions were raised. I wish I could send you what I have left.

am2015 profile image
am2015 in reply toeasterncedar

It's crazy. Looking at other options instead, back to the drawing board. Bless you for your kind offer xx

cabbagecottage profile image
cabbagecottage in reply toeasterncedar

I didn't find the Glycoppyrate helped for long

am2015 profile image
am2015 in reply tocabbagecottage

Did you use anything else?

cabbagecottage profile image
cabbagecottage in reply toam2015

No we get by. I have asked for a saliva pump but it's like asking for gold . Do u use thickener for drinks ,

If still able to gatefold by spoon I find cream caramels v good they slips down safely and not liguid

am2015 profile image
am2015 in reply tocabbagecottage

We've been using thickener for a year now. The added complication we have is mum is a diabetic so we need to monitor blood sugar so cream caramels are out of the question unfortunately.

cabbagecottage profile image
cabbagecottage in reply toam2015

Sorry to hear tha , another option are the jellies ready made but that wouldn't be possible for u either ,

am2015 profile image
am2015 in reply tocabbagecottage

No unfortunately not. Thanks anyway

easterncedar profile image
easterncedar in reply tocabbagecottage

How long? The atropine was wonderful for 15 months or so, then quite suddenly ceased to work. Increasing the dose helped for a little while only. I wish we had tried the glycopyrrolate sooner, but maybe it wouldn't have helped to the end?

am2015 profile image
am2015 in reply toeasterncedar

We've used Atropine for about 10 months, but it doesn't seem to be working as well now.

easterncedar profile image
easterncedar in reply tocabbagecottage

Cabbagecottage, how long did the glyco work?

cabbagecottage profile image
cabbagecottage in reply toeasterncedar

About two weeks .

Suebatt profile image
Suebatt

Hi am2015

We have a cough assist machine which was recommended by hospital

Hope that helps

Sue xx

am2015 profile image
am2015 in reply toSuebatt

Is the cough assist machine like a suction machine?

Suebatt profile image
Suebatt in reply toam2015

Yes it works for Archie

Sue xx

am2015 profile image
am2015 in reply toSuebatt

I'm glad it works, it's horrible seeing them suffer xx

cabbagecottage profile image
cabbagecottage

What make is it . Does it help cleat the throat as well as well as the mouth .

I have a good mind to buy one myself. I did think best of they trained me how to use in though.

easterncedar profile image
easterncedar in reply tocabbagecottage

Easy to use.

Georgepa profile image
Georgepa

V has a syringe driver which administers a constant dose of hyoscine through out twenty four hours and this has been affective . They have just altered the drug to something else but I guess it is a suck it and see thing to see what suits the patient .I think it did make V a bit more confused but then it comes down to which is the lesser of two evils .

am2015 profile image
am2015 in reply toGeorgepa

Unfortunately that's the constant dilemma, the lesser of two evils, it's trial and error with everything unfortunately.

cabbagecottage profile image
cabbagecottage in reply toGeorgepa

John was more than a bit confused it was choking him . And three days of awful delirium . Constant hyperstate talking ginnie do gooch to the wall say and night .ets wide an never closed

Cuttercat profile image
Cuttercat

It's the gagging that is so upsetting. We have machine but it doesn't help much. I'll ask about glycopyrrolate. Thanks.

Cuttercat

am2015 profile image
am2015 in reply toCuttercat

You just feel so helpless watching them.

Cuttercat profile image
Cuttercat in reply toam2015

You said it perfectly. I feel that every minute.

Thanks,

Cuttercat

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