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NHAMM

Active member
Joined
Mar 15, 2010
Messages
50
Reason
Loved one DX
Diagnosis
02/2010
Country
US
State
TN
City
Jackson
My mother has ALS, bulbar onset. She was diagnosed back in Feb., it gets harder each day to see her go down in some way. I am needing advice now on something new. She has the Bipap and the cough assist, it has been hard getting her to use these but she has gotten better about it. Here lately her cough has gotten worse. Sometimes she just has coughing spells but she cannot get anything up, she said sometimes it feels like she needs to reach back there and get stuff out of her throat, I have also noticed a gurgling sound some times in her throat. She also is having a lot of trouble with drooling. She is on ampitriptylene(not sure if spelled right), she said the roof of her mouth is very dry but the bottom is not. Does anyone have any suggestions of anything to help either of these issues?

Any advice is appreciated, God Bless,
 
I am very much the same as your mom. You mentioned the cough assist and Bipap but not a suction machine, I hope that she has one and uses it. I have a Bipap that I use every night, don't yet have a cough assist but by far the most important piece of equipment that I have is my suction machine.

I am totally peg tube fed now so I don't worry about choking on food or liquids but have serious problems with phlem and mucous in my throat. Something that works for me is flushing my mouth and throat with club soda which really helps in cutting through the goo. I have a waterpik water flosser and I put the club soda into it and direct the flow to the back of my mouth while I am bent over the sink. Often the goo just flows right out but if it doesn't then I use the Yankauer tip on the suction machine to suck out the phlem.

It is so awful to have a mucous plug that makes it hard to breathe but if I do a flush and suction before I do a feed (less chance of gagging and vomiting with a not full stomach) I am ok. I am on Glycoprryolate 3 times a day to dry myself up and reduce the saliva and phlem.

I hope this helps, all the best to you and your mom.

Barry
 
i agree with what barry has suggested. also, this wont stop the drooling, but helps with the mess- you can roll up washcloths and put it under your moms chin to sort of catch the saliva.
 
What Barry said. Glycoprryolate is pretty good at keeping the mouth dry. I haven't tried any of the other things though. The suction machine is a must have, and she would need to experiment with it to learn how to use it deep in the throat safely. Use it atleast once a day whether she thinks she needs it or not. Taking something to dry the mouth will make saliva really thick, so it can turn into a plug. Need to fish for it everyday just incase.
God bless!
 
I have had a lot of trouble lately with the mucous and phlem. I do use the cough assist and it does help to clear the airways. It is scary when you can't breathe because of a plug and that is when you need to try short breaths through the nose while you gain control. The cough assist and and the suction machine helps keep me cleared most of the time. For some reason it seems to get worse toward night time or maybe I just notice it more now. I still go to work a few afternoons a week and have found that I need to have the suction machine close by at all times so I can clear it when needed.
Nancy
 
Nancy, my worst time is in the early evening too. I don't know why that is but I find that if I do a flush and suction a few times during the day I can head off any blockages. I have a battery powered suction machine that I take with me when I go out or travel.
 
Thank you so much for your response, she was taking that medicine but caused her alot of acid reflux so she had stopped. We are calling today about the suction machine, she was not real receptive of the idea, but hopefully once we get it she will use it more. Her dad died of something similar several years ago. Even though they never called it ALS by the way he did and what I have read that has to be what he had, but at the end we would have to help suction his throat out and I think right now that is why she is hesitant about it.
 
I am have the same problem thanks for the information

always keeping the faith becky
 
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