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TeamDom

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Loved one DX
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06/2011
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Glastonbury
My father has been prescribed a Cpap to help with his breathing at night and for his severe sleep apnea. Unfortunately, he is too scared to use it because he has lost the use of his arms. If he wants/needs to take it off, he can't. Also, he constantly needs to spit up phlegm/mucus that is thick as "gummy bears". He's afraid that when the air is being blown in his mouth, it will lodge the phlegm in his air pipe and he will choke to death.

Any advice you can share would be greatly appreciated.

Thank you,
Karen
 
I just got a Trilogy to use for Bipap during the day so that it can be attached to my PWC. It comes with all sorts of alarms that can be set to alert a Caregiver that the PALS needs assistance.
 
Thank you Deb! I'll talk to his ALS team about the Trilogy at his clinic appointment next week.
Do you happen to use Cough Assist? My dad is resistant to using it as it creates uncomfortable pressure in his ears. He says it feels as though his ears will explode.
I've noticed that you reply to many threads. It's so nice of you to share your knowledge and experience with others!

Thanks again!
Karen
 
The cough assist has been a blessing for me as I have some allergies and sometimes have a problem with post nasal drip. It's the only way I can get the stuff up when I have a severe bout of it as my muscles are too weak for an effective cough unaided. Have your RT help with adjusting the pressure setting until he is more comfortable with it.
 
He can also get a mask that doesn't cover his face. Perhaps he can get used to it in the evenings watching tv?
 
Thank you notme! Unfortunately, he needs the mask because on top of ALS, he has severe sleep apnea. That's a good idea though - wearing it when he's watching TV. Any ideas how he can make a signal to his nurse when he wants to take it off?
 
td, also ask if he can get a bipap with a ramp setting, this increases the pressure gradually so it helps reduce anxiety when it goes on. this is also avaible on cpaps
i felt the same way about the cough assist but maybe a vest would help, it just loosens te mucous but it might be easier to get up
 
Thank you notme! Unfortunately, he needs the mask because on top of ALS, he has severe sleep apnea. That's a good idea though - wearing it when he's watching TV. Any ideas how he can make a signal to his nurse when he wants to take it off?

They make various masks that are much less scary. I just got one today that is WOMDERFUL. It's called a SleepWeaver. I don't know if it would work, but I'd certainly find out.

As for notifying the nurse, a bell, perhaps? Something that attaches to any body part he can use. With a chin strap, a mask that just covers the nose should work. Many have ALS and sleep apnea. I don't have ALS, but I have apnea, weakened diaphragm muscles and weakened accessory muscles, so a Cpap wasnt enough for me, I had to have a bipap. Are you sure he shouldn't be on bipap as well?

The masks that cover just the nose are lots less scary, and if he can keep his mouth shut when he's awake, he wouldn't need to use a chin strap while he got used to it.

His cpap company should be able to let him try several masks til he finds ome that works. A lovely lady donated his sleepweaver mask, but I absolutely love it. It's all cloth. But she did say it couldn't be used it the pressures were too high. Mine apparently aren't, as it works fine with my ancient machine that was also donated.

Mine also has the ramp setting, it gradually builds up to full pressure. It didn't bother me as much that way when I was first getting used to it. The other thing is to be sure the humidifier is working properly so he doesn't get dried out from it.

A search of SleepWeaver should pull up Roses link to their website.
 
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Thank you to Mary Pat as well! All good ideas! I'll keep you posted.
 
i do not have a.l.s. but i do have s.a. the trick for me was to breath out as i was putting it to my mouth , then breath in with it on my mouth .. if you are trying to breath out as you put it on it will suck your breath away the 1t few times you try it ... and that will cause a little panic attack ... i hope i explain this right
so you understand
 
Don't get a cpap. They are not advised for ALS/ get a bipap or vpap with s t capable.
 
sunewun is right didnt think of that pictular kind i even have one
 
Sunewan is right. A CPap can be detrimental to an ALS patient's respiratory system. He needs a BiPap (Trilogy has a BiPap setting). My husband had the same problem with the full face mask. He used the nasal pillows (Resmed Swift FX). Much less invasive, and be could get it off by moving his head around.
 
Does anyone have a portable bipap so they can use the equipment when traveling in the car?
 
The Trilogy is portable.
 
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