rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
I thought maybe to start a thread with this topic could be helpful, for PALs and CALs alike.
One of the biggest thorns in my side right now is adjusting to is having to use the PAP machine at night. I found that the respiratory therapist that set me up, really didn't do me any favors in choosing the type of mask I was given. After continued and growing frustration with it, I researched on the internet, and found the one I'm using is not even recommended for my facial dimensions! I've ordered a different one.
While I was researching the headgear, I discovered there are "snugglies" to put over the hose for insulation. Not only does it help machines with heated humidifiers perform more efficiently, but it makes for a cozier less medical look in the bedroom, and feels better when the hose comes in contact with skin.
The ones offered were made of fleece, but none of the colors offered really did anything for me, so I made my own. I used a lightweight silk that I had on hand and lined it with an insulating fabric. I think if you're going to make your own, the key is to use fabric that is soft to the touch, lightweight, and either has insulating qualities, or is thin enough to line with another fabric (which is what I did).
Here is a photo:
https://www.alsforums.com/forum/album.php?albumid=69&pictureid=451
If you're interested in purchasing a ready made one, just google snuggle hose for cpap or bipap and several sites should pop up.
Next, the plastic rubbery smell the machine has.... no way to use anything but distilled water in the humidifier, but, again, I found there are comfort accessories offered to help. A passive diffuser is set near the air-intake and the aroma is taken in that way. It is not overpowering at all and makes the falling asleep process much more pleasant. The company I found says its products are fully compatible with all types of positive airway pressure equipment. I didn't want to put a company name here, as we don't advertise on this forum, but thought it was good to at least let you all know that something like this actually exists.
Both of these niceties have made using my machine more pleasant to use for me, so it might be something the PAL in your life would like too.
One of the biggest thorns in my side right now is adjusting to is having to use the PAP machine at night. I found that the respiratory therapist that set me up, really didn't do me any favors in choosing the type of mask I was given. After continued and growing frustration with it, I researched on the internet, and found the one I'm using is not even recommended for my facial dimensions! I've ordered a different one.
While I was researching the headgear, I discovered there are "snugglies" to put over the hose for insulation. Not only does it help machines with heated humidifiers perform more efficiently, but it makes for a cozier less medical look in the bedroom, and feels better when the hose comes in contact with skin.
The ones offered were made of fleece, but none of the colors offered really did anything for me, so I made my own. I used a lightweight silk that I had on hand and lined it with an insulating fabric. I think if you're going to make your own, the key is to use fabric that is soft to the touch, lightweight, and either has insulating qualities, or is thin enough to line with another fabric (which is what I did).
Here is a photo:
https://www.alsforums.com/forum/album.php?albumid=69&pictureid=451
If you're interested in purchasing a ready made one, just google snuggle hose for cpap or bipap and several sites should pop up.
Next, the plastic rubbery smell the machine has.... no way to use anything but distilled water in the humidifier, but, again, I found there are comfort accessories offered to help. A passive diffuser is set near the air-intake and the aroma is taken in that way. It is not overpowering at all and makes the falling asleep process much more pleasant. The company I found says its products are fully compatible with all types of positive airway pressure equipment. I didn't want to put a company name here, as we don't advertise on this forum, but thought it was good to at least let you all know that something like this actually exists.
Both of these niceties have made using my machine more pleasant to use for me, so it might be something the PAL in your life would like too.