Care giver: My husband has PSP, starting to... - PSP Association

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Vswamy profile image
24 Replies

My husband has PSP, starting to choke with saliva and mucus. Looking for saliva suction machine.

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Vswamy profile image
Vswamy
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24 Replies
easterncedar profile image
easterncedar

It would be too much to hope you were near me in the US. I'd love to give you ours. Where are you? Ec

Vswamy profile image
Vswamy in reply toeasterncedar

Thanks. We are in the Midwest near St. Louis . I am trying to go thru our insurance company to get an equipment, find it hard to find a company that will accept the Insurance. Still working on it.

Have you talked to the doctor about this? Dad's doctor determined the saliva/mucus issue was below the voice box. A normal suction machine would not benefit this situation as you couldn't get deep enough to remove it.

Ron

Vswamy profile image
Vswamy in reply to

Thanks for your suggestion. I think that my husband's problem appears to be excess saliva, hence lots of drooling, and later becomes a mucus issue. I believe suction machine will work, as he feels a lot better after I manually remove the mucus, saliva etc.. Thanks again

Cuttercat profile image
Cuttercat in reply to

Yes, same here. I know it's the case with Charles.

Cuttercat

Duffers profile image
Duffers

You need to see GP to determine where saliva/secretions come from. If more chest than mouth then a suction machine no good. I agree with helpingdad Ron.

Marie

Vswamy profile image
Vswamy in reply toDuffers

Thanks for your suggestion. I will bring it up with my Dr.

laila123 profile image
laila123

try hospice

NanBabs profile image
NanBabs

P is trying a patch(sorry don`t know what medication it is) as he was unable to swallow liquid Mucodyne. It has had the side effect of making him constipated but otherwise it seems to be thinning out the saliva so he is choking less - but it hasn`t stopped the choking completely.

xx

Vswamy profile image
Vswamy in reply toNanBabs

Our GP is not in favor of oral medicine or patch, due rob the side effects like constipation etc.. Thanks for the suggestion.

longsuffering profile image
longsuffering

Dear Vswarmy

I bought the best one money could but and am so glad I did. It was amazing and anything less would be unsatisfactory.

I cost $2700 and is 12 months old but since I eventually lost my husband I don't need it and was going to put it on Ebay. It was so amazing I could not have managed without it and my husband most likely would have choked to death without it. It is simple to use and vital.

Make me an offer if you are in Australia-I still have all the original packaging and could send it to you.

Parts are easy to get-they come from Melbourne and they are very helpful. You only need new yankur suckers-the end part you put into your mouth as this becomes blocked over time. Also you need to change the filter every few months but can get spares from Melbourne.

Vswamy profile image
Vswamy

Thanks for your suggestion. We live in the US. I am going thru my insurance company to get the equipment. I will try that first. Thanks again.

enzo501 profile image
enzo501

I have spoken to our dentist about the suction they use in their office ...It has a central (large suction system ) the companies that sell these to dentists have much smaller/portable units that the manufacturers make ...They are sold for between 200-and 700 dollars ...new and they might have a used one for less ...It's worth checking out ...jeff

Vswamy profile image
Vswamy in reply toenzo501

Thanks Jeff, this is really helpful. I will check with my dentist.

JR61 profile image
JR61

Hi, Vswamy, the patches are called Hyoscene patches and they are stuck behind the ear, close to the salivary gland and dry up excess secretions. My dad wasn’t able to have them from his GP as the are contraindicated for men with enlarged prostate problems. However, he was admitted to hospital having totally lost his swallow over three weeks ago and it was decided that the problem with choking on the secretions was the greater issue. The patches have completely stopped all excess saliva production and he has now regained enough swallow function to eat purée food and thickened drinks. Good luck, hope you find a suitable treatment for your husband. JR61 x

Vswamy profile image
Vswamy in reply toJR61

Thanks. It is good to know about the effectiveness of the patch. We were given the Hyoscene pills by the neurologist, to be used as needed basis. Our GP was against it due to the side effects. As you said, we have to weigh in the use of it, depending on the seriousness of the situation.

Julieandrog profile image
Julieandrog

Hi

We are in UK, bizarrely we had this conversation with our hospice consultant on Monday, i thought rog was a goner on a couple of choking episodes even on puree! His advice was that to remove food you need a proper hospital machine with a rigid catheter, the danger is you may make the situation worse. Saliva suctioned might be ok.

His advice was write down what you both want if you have to call emergency services, just first aid , satueation levels, oxygen administration and remain at home whatever or blue light into A/E. Then you are in control being able to tell them calmly what has been decided.

Frightening i know but i felt enpowered with his advice, nothing is good news with this vile illness.

Suns shining here!

Julie

Vswamy profile image
Vswamy in reply toJulieandrog

Thanks for your suggestion. I need to look into consulting the experts. As you said I never know what food he is going to choke on, though he had not when he consumed it earlier without any trouble. I am taking one day at a time. Just want to make sure he is comfortable. Thanks again.

HoosierLinda profile image
HoosierLinda

You may need to contact either a Durable Medical Equipment provider or a Respiratory Care Provider. Example: CVS Pharmacy. Hopefully your insurance would cover it.

Vswamy profile image
Vswamy in reply toHoosierLinda

Thanks a bunch. I will look it up.

TomDar profile image
TomDar

I have a suction machine that was purchased with MEDICARE through a medical device company at 100%. I use it now approximately twice a week now, especially when I get a build up of phlegm and sticky mucus that I cannot hock up. Let me know if you need any information on the make that I use for I am happy with it and I would be pleased to share with you. Blessings to y’all!

Tom

TomDar profile image
TomDar in reply toTomDar

I believe it might be helpful to go through a throat doctor and also ask her to get a aspiration throat scan that your doctors will want and your docs will have to write orders for your machine that they feel will work in your case so that MEDICARE will pay for the purchase on a monthly payment basis.

Vswamy profile image
Vswamy in reply toTomDar

Thanks Tom. I am looking at a product called pro basic, that Med Resources said approved by my insurance and Medicare. Not sure how portable it is. Right now I think I will be using it occasionally for my hubby. Thinking of taking a look at probasic product.

TomDar profile image
TomDar

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