Mouth open

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KatieNBoyd

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Lost a loved one
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11/2015
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Boyd
Great title huh...just thought I would begin the day off with a weird one..My PALS mouth falls open more and more so. While riding in the car, on the plane, sitting waiting for appointments etc. We use the chin strap at night with his Bipap and to some extent it still doesn't hold all that great.
When we are out and about I gently remind him to close his mouth. I noticed at a meeting last night (I was not sitting close to him) several people would kinda look at him then look at me. Ah the weirdness of this disease.
 
Hi, Katie,
Does he use a full face mask w/ the BiPAP? Then he would not need a chin strap, which might permit more comfortable breathing.


Best,
Laurie
 
Hi Laurie. We are going to try a new mask. But I was just wondering if anyone else was/is watching their PALS deal with keeping their mouth closed besides at night. My PALS really has to keep thinking about closing his mouth. A kind relative sent us a bunch of photos from our recent trip to see his family and he was kind of taken back at how bad and old he is looking as well as in most every picture his mouth is fallen open.
 
Short of wearing the chinstrap all day, what about trying a neck collar. It doesn't just hold up the head it will keep his mouth closed.
Vincent
 
That (jaw weakness) is a classic "bulbar" symptom though it shows up in different ways/degrees. Difficulty in keeping the mouth closed is pretty common in Kennedy disease, which I am assuming was ruled out.

You will probably want to use a soft collar for transfers, at least. Try one with medium density foam, sized vertically to his neck.

Best,
Laurie
 
Thank you. He is still up and about. Walking, talking, driving even doing some things in his shop though after any of that he must rest for quite awhile. He went to physical therapy and thought it was good. We had not heard "Kennedy disease" I will ask about it.
 
Hi Katie,

My husband also has the open mouth that you describe, both during the day and the night. I use to gently tell him to close his mouth ( particularly when we were out in public) because I wasn't sure he was aware of it. Now I just figure it is due to muscle weakness and not something he can change, so we just accept it.

Sharon
 
I've noticed on a few occasions that my mouth is hanging open, particularly if I'm just sitting and watching TV. Hadn't given it much thought, but when I find myself staring slack-jawed like that I concentrate on keeping it closed for awhile...until it's hanging open again. And so it goes.....
 
Katie, I hope you got some good answers. My Mom was diagnosed yesterday after 6 months of pseudo bulbar diagnosis, electing a feeding tube and finally having weakness in her limbs (and mouth opened all the time too). Her throat was so dry she put her satin eye mask over her mouth to keep it moist and ended up in the ER with an 82 O2 level. We are meeting as a family tonight to discuss next steps and her quality of life going forward. Mom retired as a nurse after 35 years so she knew not feeding herself wasn't an option so elected the PEG early. Her spirit and strength are shining through even though she can no longer speak or have even a snack with her family. I used the "Tommy" example on her (see me, feel me, touch me, I'm still here). We're hopeful that the diagnosis brings another level of care so she is comfortable and not in pain going forward and that there are more caregivers in her/our lives. She's never been a complainer and didn't flinch when the Dr said those 3 letters officially. Take care..
 
Thank you all. A friend suggested using Biotene oral balance. It is a gel. He has used it with some success. He is still saying No to the PEG. We are going to Rochester MN Mayo clinic maybe their opinion will change his mind. At this point I am just the driver, paper keeper, cook etc...;)
 
Yup, I hear you. Steve's jaw opens when he sleeps. It is so noisy. He uses a full face mask
 
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