swallowing?

[fallinggirl]

Hi! I have a question as a just diagnosed in June PALS.

Today I noticed that every time I eat, the best way I can describe it, is as if my mouth (mostly the bottom- jaw I guess) is being screwed in. Like it's being tightened... is this normal for als?! It took me an hour to eat a simple ham and cheese sandwich! I just couldn't bear it. :-(

 

[AzBabs]

I get the feeling of tired/heavy feeling jaws if i eat something hard or chewey. I am bulbar onset, so my tongue/face were first affected. I now stick to small bites of soft, easy to chew food. I also drink a lot of fruit smoothies with protein powder. It takes me forever to eat also.

 

[jellis86]

I know what you are describing. Like AzBabs, I too am bulbar onset and can only eat softer foods and very slowly.
My eating ability changes daily, or at least it seems that way.

Another thing I notice is how tight my cheeks and lips are to my teeth. I am assuming that as the muscles atrophy, the cheeks lay flatter against my teeth? All I know is I have to be careful or I constantly bite one or the other or both.

 

[Outdoor_Man_Nc]

Bulbar here too. I do bite my lip at times and my teeth have shifted some in my mouth. When something is on my tongue it feels like it weighs a ton. There is a thing called swift jaw I used to get that has you clamping your mouth shut when you don't expect it. I haven't had that problem in some time.

 

[affected]

my PALS bulbar symptoms are similar and it was all thought to be dental issues at first, except the slurred speech. funny how they ignored that but his problems were:
teeth grinding at night
constant biting inside of cheeks and lips
felt that cheeks and lips were swollen (but it turns out it was lack of muscle tone)
jaw tension and heavy feeling
the jaw clamping
teeth chattering
jaw clenching and stiff jaw
excess saliva, or perception of, we still aren't sure if it's a swallowing issue or true excess, however many things can make him salivate, such as the moment the electric toothbrush goes on.

They ended up removing 2 back molars, directly above and below each other, and removing some excess jaw bone. The result is that eating is even more difficult with those missing teeth and the risk of biting his tongue in that gap is higher.

As it progressed however he doesn't so much have the tension now, but his swallowing and speech have deteriorated a lot.

 

[AzBabs]

I have recently noticed atrophy in my chin, dimples I didn't have before. Also hate when I sneeze, my tongue has atrophy but I still manage to bite it ever time I sneeze.

 

[bowser]

feeding peg does wonders for difficulty in swallowing.

It is buying my wife extra time to enjoy grandkids as she would have been dead last November w/o it.