Dealing with saliva

[Gentleman Jim]

Hello, I am a good friend and assistant to a man with ALS. (2007) He is experiencing the saliva issues which leads me to the question. How do you deal with your swallowing? He does have a vent, though recent, saliva is always an issue. Meds make his mouth to dry, yes we have a suction machine, but I am looking for answers from some of you who I know have or are dealing with this same problem.
He has had botox injections in the neck, tried multiple meds. We are aware that everyone is and can be different. What works for you? What didn't work for you? That will help us, thanks.

Also, he is looking for a good neck brace that will work with his vent. Any suggestions would be helpful. Thank you.

Jim

 

[Gentleman Jim]

Hello, Maybe I am not explaining myself very well. We are talking advanced stages. Joe sounds like he is pretty far along also.
Neck muscles gone, vent, groshon, and a peg tube. We've got it all. Been to Mexico, Colorado, Florida, Minn. Maryland, Ohio.

Been to the best and some of the rest. Stem Cell, lime dis, you name it, we have ventured into these waters with no avail.
Cleveland Clinic, basically, go home and die. The problem with case studies is "are you the one with the placebo?"

So, step up to the plate and tell me the simple answer to my friends problem. What works for you? What does not work for you?

Those who have been around the block, faced the situation and are not afraid to tell it like it is. We are not complainers, we have not been around the world, we have been around the US and Mexico.

Good insurance and thousands of dollars later, still the same boat. My friend has accepted Christ and we have baptized him, he is good to go.

What can we do to help him?

Jim

 

[joelc]

Content Index

There are a couple of articles concerning saliva that might help. It is hard to deal with it.

 

[Phil M]

Jim, I don't think its possible to make the mouth perfect.

 

[LizT]

amitriptyline (its an anti depressant with dry mouth as a side effect) and a saliva patch.
lots of suctioning. lots of fluids to keep secretions as thin as possible.
you can also roll up a washcloth and tuck it into each side of the trach collar to collect the saliva so its not running down
his chin all of the time. without the ability to swallow, its dang near impossible to dry up the saliva completely.
my PALS has been locked in and on a vent for just about 6 years now.
good luck

 

[Gentleman Jim]

Thank you all so very much for the links and advice. You sure are right when you say there is no perfect mouth.
I will investigate the web sight. The tips will be tried.

What about the neck brace. Know anybody who has tried the headmaster collar with a trac?

Headmaster Collar

Thanks again Liz, Phil and Joe for your taking the time to read my post and your response.

Jim

 

[abbas child]

Jim, use the search button (white button on the blue bar, top of page) to look at "Headmaster Collar" in posts. I just looked and it sounds like the opinion is good. I've also used a link while reading to their store, "Symmetric Designs", where you can read a pdf file explaining how to choose the size. I'm also in need of help, and think this may be the answer.
Ann

 

[blue123rd]

I have a question regarding salivia. With ALS is it that people cant swallow or is there just a buildup*of salivia in their mouth and throat. i find that it seems like there is always phelgm or mucus in my mouth and throat. sometimes its a green color more times clear. i also have muscle aches over the entire body.

 

[abbas child]

https://www.alsforums.com/forum/als...trophic-lateral-sclerosis-ftd.html#post151304

Jim, this post speaks a lot about saliva.

 

[Phil M]

I have a headmaster, It works great!

 

[abbas child]

Thanks, Phil. That's good to know. Did you just buy it or did a therapist order it for you?

 

[Al]

Hi Blue. It's a swallowing problem not excess saliva. Muscle aches all over is not an ALS symptom.

AL.

 

[Jellycat]

Hi blue, I agree with Al. The average person 'dry' swallows about 400 times a day. (or so I was told by a speech therapist). When a person can no longer do this, the saliva, once unseen and unthought of, makes it's appearance. And boy then do we know about it!

Jim, we had no joy with patches. Side effects too much for us. We were warned off radiation in case it made the mouth too dry & my pals was then stuck with it. I've heard some talk of Botox injections which last a few months. We use amytriptylene, already mentioned here and are steadily increasing the dose. Not sure if that's due to increasing tolerance of the medication or increasing weakness of muscles in throat. Suspect the latter.

All the best

 

[Judith]

Jim

I do not have a vent, but I have been dealing with saliva issues for quite a while. I tried the patch, but had a very adverse reaction to it. I take Oxybutynin for bladder urgency which has a side effect of dry mouth.
I take Amitriptyline for deep sleep and it also has a side effect of dry mouth. I find they do help somewhat, but I still need to carry a kleenex around continuously. I just deal with the nuisance.

Judy

 

[Judith]

I have a headmaster, It works great!

Phil,
Do you know if the Headmaster is a covered DME with Medcare?

Judy