Mouth clamping on tongue.

[NHAMM]

I am writing today in need of some advice, hoping some of you out there may have some suggestions. My mother was diagnosed with PBP in Feb 2010. She can no longer talk or eat. She is getting weaker daily. She can no longer hold her head up when she walks, and is using her walker. I hate this disease and what it has done to her. It seems like almost daily there is some new sympton that pops up that she has to deal with, it is awful. At times before she could not keep her mouth closed and now she is having trouble with her mouth clamping down just when she is sitting down, yesterday when it happened her teeth clamped down on her tongue and caused it to bleed. When this happens it takes awhile for her mouth to be able to open. Has anyone out there had this happen and if so have you found anything that helps either to prevent it or to help get your mouth opened?

Thanks

 

[trfogey]

NHAMM, you may get better responses if you post this in the General ALS Discussion part of the board. Lots of the PALS go through this when the jaw muscles become affected.

 

[Miss]

Yes, my husband has uncontollable clamping of his teeth (usually on my finger or a utensil, though!). So far, no tongue biting. Funny, I didn't think of that happening!

 

[ZenArcher]

Things that help with spasticity like Baclofen or Lorazepam will help but I don't know of any way to stop it completely.

 

[LizT]

this happens with my PALS all the time. He almost bites his tongue off... heres what we do...
if it has already happened, we try to push his tongue back into his mouth- thru his teeth all while we are pushing as hard as we can on his lower jaw (right under his bottom lip)- pushing down of course.
to prevent- we made a strap with velcro on the ends that wraps around his head, under the jaw. we usually put a folded up piece of SOFT paper towel between the strap and his jaw. velcro tightly on top of the head. it has to be tight so the tongue doesnt slip thru.
Hope this helps and good luck.

 

[LauraW]

My Mom has a mouth guard that she wears during the day and one that she wears at night. It has been a wonderful thing. No more mouth bleeds.

 

[tammyg]

My dad had Bulbar Palsy/ALS. He used to put a face rag in his mouth. We even tried a mouth guear. Dad got to the point where he was braking off his teeth. Such a heart wrenching disease this is.