Does your tongue not work like mine?

[rickmcmahan]

I know this is weird, but I was just curious how common is one of my symptioms. Here it is: Sometimes when I go to take a sip of any liquid - nothing happens! The liquid just sits there against my lips and tongue. It may stay that way for a few seconds then WHAM! My tongue will allow the liquid to move to the back of my mouth and allow it to be swallowed. Have any of you heard or experienced this symptiom? Now my tongue is very weak and eating is a real chore. But I still do eat a fair amount of foods. But to have that liquid just stay there against the front of my mouth is so different. Let me know if you have any info on this subject. Thanks Rick:-D

 

[SoniaT]

Hi,

My mom had similiar problems with her tongue. She would try to swallow her meds and just sort of hold them in her mouth until her tongue could work strongly enough to help her swallow. I finally had to crush up her meds and put them in a little spoonful of yogurt or jam and help her take a little bit at a time. She also had a lot of difficulty eating, she would choke on her food. I'm not a person with ALS but was my beloved mother's caregiver for over 2 years.


God bless,

SoniaT
Vancouver, BC

 

[Blackbird_29]

Hey my tongue is almost dead, except I feel it when I bite it! I use my finger to move food onto teeth to chew. Pills sit at back of throat and I almost gag just before it goes down. Sometimes it comes up for round 2!
I have PBP.
cheers
Merle (Kiwi from New Zealand) :-D

 

[rickmcmahan]

I have problems swallowing pills too! But I have learned that the problem is my tongue for some reason does not sense the fact that the pill is there, thus no swallowing. So here is what I do to wake that tongue up. I take a small bite of soft oatmeal cookies and a small spoon of apple sauce with the pill in the apple sauce. Together they result in a "swallow of the pill" event! I too have to use my fork to move food over into my teeth to allow it to get chewed up. Does the top of your tongue have a brown like color to it like mine? It is wierd. No known cause. My wife told me too that I have the worst case of bad breath she has ever seen. Is this common with PALS? Hope this helps you a little with taking those pills. Rick

 

[lunarruna]

brown tongue (what next?!)

Rick...I have been puzzling over my husband's brown tonugue for awhile now! It's startling....I can only see it well when he yawns since he cant really open his mouth anymore. (What's next with this crazy disease!?). He had all your tongue and mouth problems and no longer eats/drinks anything except through his PEG. For awhile his tongue had a whitish color on it. The only thing he ingests now is some coke about 4 x a day , which I 'pipette' into his mouth with a straw, a tiny bit at a time and he slowly manages it and swallows. He does it to cut the saliva build-ups, it is acidic. I was wondering if the brown color is the carmel coloring from the coke? Do you drink coke? I have also worried that he may have 'thrush' (an oral yeast infection).
By the way, are you thinking about getting a PEG? Might be time if that is something you are going to do.
Good Luck, Beth (CALS to Shannon, age 42, diagnoseded 8/04, no arm use, wheelchair 11/05, PEG 3/06)

 

[rickmcmahan]

Beth,


Yep - I got my PEG installed about three weeks ago. I am so glad I did this. I use it to give me a can of insure + 16 oz of water to keep me hydrated. I do this twice a day. I still can eat some foods, but I just have to be very carful to chew it good. Thin liquids are a big problem. I am addicted to TAB, the Coke Company's 1st ever diet drink. I try to drink from 3-4 per day. Yes it does take much longer to drink them, but I love TABS! Yes my tongue was kind of white a few months ago, but now the back portion of it is kind of brown. Yes it could be from the coke, but I have consumed TAB every day for years. So for that reason, I feel like my tongue would have never been white if your theory is correct about the coke staining the tongue. Thanks for the reply. Rick

 

[BWk]

Couldn't you guys grind up your pills and then swallow them with whatever liquid you can still get get down, guess some pills wouldn't work of course like vit. E.

 

[lunarruna]

Rick...Now I have you in memory--the TAB guy with the new PEG from other posts, okay.
Welll, I googled "brown tongue' and low and behold there is a medical condition called brown tongue or black tongue and it happens when someone has a soft diet or not eating and tongue surface doesnt get 'worn' down, the papillae on the surface grow out and turn brown (or other colors, like white!). It isnt real serious and the cure is mostly brushing or scraping tongue in most cases helps. There is a bunch of other info, many people with compromised immune systems (ie AIDs, etc) get it too. You can check out the web info.
Our problem is I can barely get anything into his mouth to clean it...I have a baby toothbrush and can hardly fit that in, also got a tongue scraper and on good days I can get it in there a bit and scrape some.
Anyway......brown tongue really the least of our troubles, eh? But interesting to know and one less thing to worry about. Have a good evening, Cheers, Beth

 

[dana]

My dad has a case of the white tongue. The doctors think it is thrush and have him taking a medication for it. After taking the medication, it gets better, but the white tongue continues to return not long after stopping the medication. My mom brushes his teeth and tongue a few times a day, but the white does not seem to get better. I'm assuming the white tongue is similar to the brown tongue and not too horribly dangerous.
Dana

 

[Blackbird_29]

Hi again,
I am down to have a PEG 10th October. At first only for a supplement. What do you put down? Ensure was mentioned. What about Fortisap? Can the evening mealbe blended to put down? Excuse my ignorance please.
Regards
Merle (Kiwi with PBP):-D

 

[rickmcmahan]

BWK - You cannot crush a softgel type medication like the Co Q 10 I take. The Creatine I take is a powder. I mix it with water and pour it down the PEG tube. No problem. But yes, crushing pills that can be crushed makes since, but I would PEG em vs swallowing them.

Lunarrunar - Thaks for the info on the brown tongue thing. It makes since to me since I have very little tongue contact with food to keep the tongue surface worn off. Thanks for the information.

For those considering having a feeding tube put in -DO IT! It will make your life so much better. I still eat what I can, but it takes a lot of time to chew it up properly. So get that tube and let it remove some of the stress from your daily living. Oh yea, I plan to have my PEG tube converted to a button type of tube in a month or so. The button tube is flush with the skin and is not likely to get hung on things like a PEG tube is. So if you don't like a 10" tube hanging from your belly, consider that button tube as an alternative. Have a great day. Thanks for the info. Rick