Tips for Bulbarians...

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Phil M

Senior member
Joined
Dec 28, 2008
Messages
599
Reason
PALS
Diagnosis
5/2008
Country
US
State
Ga
City
Snellville
How to spit in public...keep a couple paper towels folded up in your pocket. When the dreded spits starts building up. Act like your blowing your nose. Pinch your nose, and blow it out of your mouth. No one knows the difference!
Oral hygene...I keep a real soft toothbrush in my bathroom. After brushing my teeth with a electric brush. I use mouthwash. While the mouthwash is still in my mouth, I use the soft brush to rake out the nasty slime. Starting at the back of my tongue, or roof of mouth, and rake it out like you would leaves in the yard. Sometimes I do this several times a day.
And I always keep one of those pocket size mouthwash sprays in my pocket for when my mouth feels icky....Hope this is helpfull. This bulbar stuff really sucks!
 
Phil, I agree 100%, Bulbar really does suck! Thanks for the tips, I cant use mouthwash but I do brush, flush and suction my mouth and throat at least a couple of times a day. We went out to Canada Day festivities today and I lasted a couple of hours before I had to come home for a suction session, I hate gagging in public!
 
Phil, I agree 100%, Bulbar really does suck! Thanks for the tips, I cant use mouthwash but I do brush, flush and suction my mouth and throat at least a couple of times a day. We went out to Canada Day festivities today and I lasted a couple of hours before I had to come home for a suction session, I hate gagging in public!

Do you take Robinul/glycopirrolate?
 
I do 5ml with my late feed before bed to reduce the drooling in the bipap mask but that is all. I guess that I should try to take it during the day too, the bottle says up to 3 times a day. I wonder if it will cause dry goo rather than wet goo, less gagging anyway.
 
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