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kellykago

Active member
Joined
Feb 11, 2012
Messages
63
Reason
PALS
Diagnosis
12/2016
Country
US
State
CA
City
Fairfield
I have bulbar ALS and have been noticing that I get thick mucous that feels like it sits at the back if my tongue/throat. It seems to be worsening. Is this typical as the muscles in the mouth weaken?
 
My PALS has the same. He has Bulbar Onset ALS. I believe his is caused by the meds he is taking for excess saliva. He is taking Nuedexta and Atropine drops.

He has started Tripete's regimen of Original Alka-Seltzer everyday. This is working well but has to be used everyday. Like Pete says, doesn't work the day you do it, it works the next day. If we forget, we do it once in the morning and once at night to catch up so it doesn't get ahead of us.

Hope this helps!
 
My PALS has bulbar onset also and is doing very poorly. He's too weak to cough and we use a cough assist to try and clear what we can. We've also stopped the Neudexta to see if that helps.

Louise
 
Check your diets. Milk, corn, wheat, soy and eggs can all cause you to generate mucus. Soy doesn't bother me but milk and wheat do. Everyone is different.
 
I have bulbar onset too and this exact thing happens to me as well! My problems with postnasal drip and other ENT stuff all started at the same time as my bulbar symptoms and I definitely believe it is due to problems related to muscles in the area weakening and not functioning well. I know for me the mucous sitting right at the back ofmy throat tends to happen when the muscles of my soft palate are not closing. It causes difficulty pronouncing sounds and speaking, and other things, like saliva going up my nose. An SLP who works with ALS patients explained it to me and showed me pictures so I could see what she meant. It made several of my symptoms suddenly make sense.
 
Do you also have difficulty blowing your nose? I can't seem to get much force. The air escapes through the back of my throat
 
Kelly that was an early thing for my Chris who was bulbar onset - very frustrating for him!

The solution that really worked was I would do a saline nose wash daily - we started this once he couldn't lift his hands to his nose and he wished we had started it months earlier as it made a huge difference.
 
We started using saline nasal spray 1-2X day after we started seeing what looked like nasal discharge in my husband's mouth...it was pretty bad. It has made a real difference. Kate
 
I am using a suction machine with a yankeur nozzle attachment to pull the thick mucus from my wife's throat. We do this several times a day when she gets really stuffed. I would like to try the Alka Seltzer but do not understand how much liquid to give her with it. She only takes 1.5 liters of water a day. Instructions say to dissovle in glass of water, that is almost her whole intake for the day. Do I just give her a few oz of it at a time?
 
We dissolve the tablets in about 1/2 cup of water and then flush with a tube of water afterwards
 
Thank you, just the info I need. I will give it and maybe just plain baking soda a try.
 
I get the crazy thick mucus too. It's like rubber! I've been able to use the cough assist to get it out, but it's a struggle every time and I feel like I'm going to choke. But once it's out, breathing is easier and I relax more. I don't take anything for it though. My doctor says I'm not hydrating enough, but I take a cup of water with every feeding (5 to 6 times a day), plus 150 mL of water after each feeding. I don't know how much more hydrated I could be.
 
I've started using pharmanac n-acetylcysteine 900mg effervescent tablets. I read about it on als worldwide website and it thins mucous. It is available through iherb.com
 
Try Guaifenesin. It is the ingredient in expectorant cough medicines. You can buy straight Guaifenesin without the extra medications included in cough medicine. No prescription required. Can be taken orally (tastes as bad as other cough medicine) or through a feeding tube. It loosens the mucus in less than ten minutes and makes it much easier to cough out the mucous/phlegm. Really quite amazing stuff! If you have a cough assist machine it will make it more effective.
 
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