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lreilly

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May 10, 2007
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PALS
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Hi everybody
My name is Laura. My mom was diagnosed with ALS 5 years ago. She made the decsion not to get a feeding tube and not to be on bipap/vent. Her pain is pretty well under contol these days. Our problem is this: My mom says there is a waxy substance in her throat which feels like it is suffocating her. The only thing that helps to take it away is hot water. At first she thought it was thrush, but no one, including the docotr or nurses, could see any evidence of thrush in her mouth or throat. Then today when I went down to visit it took me about an hour, no exaggeration to understand that she thought she had worms crawling around in throat. I know she's on a lot of medicines that could cause her to hallucinate, but she insists that this is not her imagination. Anyone have any ideas about how to help her?
Laura
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
Hi Laura. Welcome. Some of the people here lately have said coca cola helps break up the crud in their throats. I've never heard anyone mention the creepy crawlies in the throat that I can remember? Anyone else ?
AL.
 

lunarruna

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Joined
May 20, 2006
Messages
145
Reason
CALS
Country
US
State
xx
Hi Laura...
Your Mom is experiencing a very real phenomenon: Hairy Tongue, or sometimes called Black Tongue (it can turn black, but can be cream colored or brown too). You can do an internet search and learn more. It is potentially serious with ALS as the hairs grow back down the throat and can wick saliva down there and cause choking and aspiration. It is one of my husbands biggest problems and we had to figure it out ourselves---docs were dumb about it but our hospice nurse had heard of it. Basically it happens in people with soft diets (or feeding tubes) and it is the cells in the tongue growing out long because they dont get rubbed/mechanically broken off. The cure is simply brushing /scraping the tongue, and there are also some chemical cleaners but you need the mechanical motion too.
Somelinks:
http://www.aaomp.org/brochures/Hairy-CoatedTongue.pdf
http://en.wikipedia.org/wiki/Hairy_tongue

here is the tongue scraper we use, from drugstore.com
http://www.drugstore.com/products/prod.asp?pid=137749&catid=1152&trx=PLST-0-SEARCH&trxp1=1152&trxp2=137749&trxp3=1&trxp4=0&btrx=BUY-PLST-0-SEARCH

Good Luck--your Mom will be relieved to know there is a cure for this!
Beth
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
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Country
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State
On
Now Beth that was something a little different. Interesting though. I've heard of it but never seen the pictures. Thanks.
AL.
 
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