BiPap mask for a bulbar onset patient?

[NotMyDad]

Hi Everyone,

My father started with a BiPap machine last week, and it doesn't seem to work. He is bulbar onset, and right now can't keep his mouth closed other than by holding it with his hands, which he can still do, but it's not easy even now (and his hands are weakening). He has to press really hard on his mouth, otherwise a small gap is sufficient for the air to come out through the hole.

Is there any solution to this problem? What if he can't hold his mouth closed with his hands anymore? Would he ever be able to sleep with it if his mouth gets open all the time?

Thank you in advance for your help!

 

[KW1234]

Get a chin strap from your provider. I have the same problem. I use a full face mask at night with the chin strap. During the day, I use a nasal mask but bite down on a dishtowel to keep my mouth closed and deal with the drool. I use it intermittently during the day.

 

[NotMyDad]

Thank you for your reply, KW1234!
I wonder what the chin strap is - my father is in Poland, and doesn't have any good doctor...
He also says that he wouldn't be able to keep his mouth close by biting on a towel....
We'll definitely try a full face mask.

 

[Nikki J]

Google chin strap for cpap. You can see pictures. You can buy one and send it to him if needed

 

[NotMyDad]

I found them, thank you so much, Nikki j!!

 

[soonerwife]

My PALS is also Bulbar Onset. He used the chin strap with his first mask but then decided the full face mask worked better for him due to air leakage out of the out of the mouth even with the chin strap. He was using a medium Aitfit F20 then he switched to a large Aitfit F20 because the bottom part of his mouth would fall out of the medium. He seems to be doing well with this. It has magnetized bottom strap which makes it easier for PALS to put on himself.

 

[ShiftKicker]

Soonerwife- I use the same model (but a woman's small!) and it has been the best one for holding the jaw shut while also being relatively comfortable. I will wake up in the morning sometimes forgetting I was wearing the darn thing.

I had an issue with lip seal that a chin strap (referred to as a "jaw bra" by the sales rep) was not doing anything for. Even if my mouth was held shut by the strap, air continued to go through my lips as soon as I relaxed and started to drool in my sleep. Full face was the only option for me.

 

[lgelb]

For those needing a chin strap or wanting to try, a stretchy nylon hairband from the drug store can be cut to size, folded over, etc.

I encourage you to periodically re-assess the need for a FF mask, as the muscles / reflex that opens the mouth can change as ALS progresses, allowing for a nasal mask, which obviously is better for swallowing, eating, drinking, speech to the extent these are possible. There are also some reasons to believe the PAP can be more efficient/effective when the nose and mouth are in essence not "competing" for air as they weaken, and potentially rebreathing CO2 to a greater extent.

I am not saying not to use a FF mask, but to periodically try a nasal mask if you can.

 

[NotMyDad]

Thank you all for super useful advice. I am so grateful for this board and for your help - it's amazing to be able to always count on you!