struggle tolerating trilogy

Lisa Karnish

New member
Joined
Jul 13, 2021
Messages
3
Reason
CALS
Diagnosis
10/2019
Country
US
State
DE
City
Seaford
Thank you for having me on your forum. I am CALS and a nurse. My Sil diagnosed 2 years ago with bulbar ALS really needs to get used to this vent. her sats are low esp. at night. The nasal pillow gives her a headache (she had sinus surgery in january) and the oronasal collects the copious oral secretions she has to deal with and she has to wipe her mouth frequently. Suggestions on mask options please. Suggestions on how to help her tolerate this. Our resp therapist is not helping us think of a way to make this work for her. I appreciate any help. Thank you.
 

lgelb

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Hi, Lisa, welcome to the forums. My late husband was diagnosed when we lived in Wilmington.

I would try a nasal mask that does not fit as tightly, creates some air circulation in the area, and stays well above the mouth, e.g. the SleepWeaver Élan. Many masks that you buy from cpap.com are returnable if you buy return insurance, or sometimes the mfr throws it in for free. The Advance mask is another possibility, but you can look at them both and see what you think, or you may see something else on the site that is worth trying.

Let me know if you need help adjusting her machine settings for greater comfort.

Best,
Laurie
 

MikeD123

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Joined
Feb 18, 2021
Messages
2
Reason
PALS
Diagnosis
11/2019
Country
US
State
PA
City
Pittsburgh
Lisa. I was diagnosed with bulbar als about 18 months ago. The nasal mask blows the air in my nose and out my mouth it helps evaporate my spit and keeps it out of my throat. God bless. I hope that helps.
 

Lisa Karnish

New member
Joined
Jul 13, 2021
Messages
3
Reason
CALS
Diagnosis
10/2019
Country
US
State
DE
City
Seaford
Thank you! Secretions are a definite problem. It helps to hear that someone has found something to help. How kind of you to be willing to help others while going through this yourself. God Bless you, my friend.
 

Lisa Karnish

New member
Joined
Jul 13, 2021
Messages
3
Reason
CALS
Diagnosis
10/2019
Country
US
State
DE
City
Seaford
This is so very helpful. to be honest I was not getting much help form resp. therapist on this mask issue. I am going to look into these. I will not give up. Thank you, and I am so sorry for your loss.
 

rnewton60

Member
Joined
Mar 1, 2021
Messages
20
Reason
PALS
Diagnosis
11/2019
Country
US
State
CA
City
Fremont
First suggest you use the redit forum for ALS. All free and no limit on comments. I don't know if this is helpful or not but I can't stand wearing a mask. I use a normal fan and set it to blow on my face and that is working so far. I have bulbar onset ALS since 11/01/19.
 

affected

Guru status reached
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Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
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lala land
@rnewton60 this forum is free and has no limit on comments too. Just look how many I've made!
I also am involved with groups on fb, you can't have enough support I always say.
@Lisa Karnish sorry I can't add any constructive help on your original question but some answers here have been really on point.
 

rnewton60

Member
Joined
Mar 1, 2021
Messages
20
Reason
PALS
Diagnosis
11/2019
Country
US
State
CA
City
Fremont
It only kets me post once a week. Redit is unlimited and free and you can post as often as you like.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
@rnewton60 I've directed your post limit issue to the mods to hopefully help you with as it is really strange if you can only post once a week. I'm sure they will help sort this with you 😊
 
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