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NotMyDad

Active member
Joined
Sep 1, 2016
Messages
70
Reason
Lost a loved one
Diagnosis
11/2016
Country
US
State
VA
City
Woodbridge
Hello Everybody,
My dad's disease makes him more and more miserable, and he has less and less patience. Now he is upset that he is supposed to use his BiPap and cough assist. Neither works really well for him.

With the BiPap, he constantly complains that it leeks into his eyes, and he has eye problems even from before ALS.

With the cough assist, he says that it blows onto his throat, and makes him sick, and that it caused an even greater amount of flegm that doesn't let him sleep, goes through his nose, and makes him so miserable.

Are there any tricks I could suggest to him? Does anybody else experience similar problems?

I'd be grateful for any advice...
 
I had troubles with the cough assist until I figured out that it can be used with the bipap mask by fixing the bipap mask connector into the hose and taping over the exhalation holes. Then instead of switching masks you just switch hoses.
 
Addition: I am unable to open my mouth so the cough assist sucked the mucus out through the nose. After the session, the nose was suctioned all the way into the throat.
 
What kind of BiPAP mask does he have? There are many shapes and sizes. He doesn't have to have air blowing into his eyes. Is the headgear too tight? You want the suction to set itself, not for the mask to be forced against the skin. It is also important to clean the "lining" every day for a good seal.

My husband had many pre-ALS eye surgeries -- it can be better, I promise.
 
I use a cloth gasket I get from Cpap.com ''its called remzzz it make for comfort and no air leaking. It also stops face farts.
Patrick
 
Thank you for your replies!
I think he uses something AirFit Full Face mask.
I wonder if we should get an AirFit Nasal Pillow mask for him?

I'd get those Remzzz pads with it, too....

And is it possible that cough assist actually makes him produce more flegm, or irritates or something that so much of it shows up?
 
Yes, it is possible. For some people the CoughAssist is counterproductive.

The mask liners can help; you can also buy or make muslin skullcaps. But starting with a squeaky clean face and mask is step 1.
 
This equipment requires the authorization of a respiratory therapist, you should contact him/her for proper mask fitting and to check the settings on the cough assist.
 
Tom, if you are referring to BiPAP masks, once you have an rx for one, you can try as many as you like. Many on cpap.com have free return insurance if you don't like them. No RT intervention is involved, as fitting masks (like setting the machine) is a highly individual thing.
 
One more question. My dad has a super nice doctor, an anestesiologist, who actually never had another ALS patient with the Bulbar onset or the similar problems my dad is going through right now (he acknowledge that). So I wonder if he may just not know enough? He told my dad to use the cough assist everyday, no matter how he feels. So even if the mucus doesn't bother him, he's supposed to use that cough assist. Is this a good idea or rather not?
 
The basic rule is three sessions a day to prevent pneumonia.
 
Oh wow, I didn't know. How long should those sessions be?
 
4-6 times 4-6 coughs.
 
Thank you so much!!
 
Prophylactic treatment with the CoughAssist is not a slam dunk. In some PALS, the harm is greater than the benefit. Be guided by how your dad feels before, during and after treatment.

Other areas to look at and fine-tune include machine and room heat/humidification, changing machine and room air filters, and the various phlegm remedies we've talked about here, from soda to Alka-Seltzer to papaya juice.
 
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