Not Around Much, but Trilogy/MD Questions....

[Madalot]

I really don't come into the forum much, for a variety of reasons. Some of the "stuff" going on here is a little twisted so I've taken the road of many others. However, I don't mind coming in if there is somebody asking questions about the Trilogy and/or bipap with a Muscular Dystrophy.

If anyone sees a Trilogy/patient with Muscular Dystrophy question, you can send me a PM telling me about it and if I can, I WILL come in and see if there's any input I can offer. JDS74 was doing it for a while and I really appreciate it.

Most likely, it's the only way I'll know about it. This last Trilogy question was just a fluke because I came in for a PM and decided to browse the topics really quickly, which I normally don't do.

[49er]

I really don't come into the forum much, for a variety of reasons. Some of the "stuff" going on here is a little twisted so I've taken the road of many others. However, I don't mind coming in if there is somebody asking questions about the Trilogy and/or bipap with a Muscular Dystrophy.

If anyone sees a Trilogy/patient with Muscular Dystrophy question, you can send me a PM telling me about it and if I can, I WILL come in and see if there's any input I can offer. JDS74 was doing it for a while and I really appreciate it.

Most likely, it's the only way I'll know about it. This last Trilogy question was just a fluke because I came in for a PM and decided to browse the topics really quickly, which I normally don't do.

Thanks Madalot, hopefully, I can remember to PM you when I see a Trilogy question post.

49er

[lilly747]

I really don't come into the forum much, for a variety of reasons. Some of the "stuff" going on here is a little twisted so I've taken the road of many others. However, I don't mind coming in if there is somebody asking questions about the Trilogy and/or bipap with a Muscular Dystrophy.

If anyone sees a Trilogy/patient with Muscular Dystrophy question, you can send me a PM telling me about it and if I can, I WILL come in and see if there's any input I can offer. JDS74 was doing it for a while and I really appreciate it.

Most likely, it's the only way I'll know about it. This last Trilogy question was just a fluke because I came in for a PM and decided to browse the topics really quickly, which I normally don't do.

Thank You for popping in once in a while. This is an area where few can help, and this board is a better place because of people like you...

[Thatgirl]

I like seeing your posts. Hope you decide to drop in once in awhile!

[49er]

I really don't come into the forum much, for a variety of reasons. Some of the "stuff" going on here is a little twisted so I've taken the road of many others. However, I don't mind coming in if there is somebody asking questions about the Trilogy and/or bipap with a Muscular Dystrophy.

If anyone sees a Trilogy/patient with Muscular Dystrophy question, you can send me a PM telling me about it and if I can, I WILL come in and see if there's any input I can offer. JDS74 was doing it for a while and I really appreciate it.

Most likely, it's the only way I'll know about it. This last Trilogy question was just a fluke because I came in for a PM and decided to browse the topics really quickly, which I normally don't do.

Thank You for popping in once in a while. This is an area where few can help, and this board is a better place because of people like you...

+1

[kteague]

Good to know you are available if this situation comes up. I'm still here most days, but quit reading EVERY post a long time ago simply due to the time my total internet activity consumes. I have received messages too letting me know when it appears I've missed a PLMD related post. I know this is selfish, but it makes me feel a bit better when I see that some of the people I've enjoyed knowing on here for years are not totally gone.

[49er]

Good to know you are available if this situation comes up. I'm still here most days, but quit reading EVERY post a long time ago simply due to the time my total internet activity consumes. I have received emails too letting me know when it appears I've missed a PLMD related post. I know this is selfish, but it makes me feel a bit better when I see that some of the people I've enjoyed knowing on here for years are not totally gone.

No, it isn't selfish kteague. And you can't help other people if you don't take of yourself, right?

49er

[kteague]

No, it isn't selfish kteague. And you can't help other people if you don't take of yourself, right? 49er

Thank you.

[mjmia3]

My daughter is on the Trilogy (CPAP), otherwise normal.

[Swharlow]

I have a muscular dystrophy and do have Trilogy questions. I went from an S9 ST auto to trilogy avaps ae. As per usual, the RT that brought it out was none too educated on it. First of all, there was no humidifier included. She told me the bacterial filter, was some sort of humidity function. (?). Ya right. Then she didn't even recognize the tubing for the trilogy that connects to a F&P humidifier.

I could not find the info on the main page here for unlocking the menu, can someone direct me?

I'm trying to adjust from ST, to the avaps ae. My settings were also just doubled, so it's a lot to adjust to at once. My muscles seem to be more sore with the new mode and I'm wondering if this is another thing an MD patient shouldn't be using?. My pulmo is not familiar with my disease. My son who has the same disease and the same machine (better pulmo dr) is set for ST with humidifier.

[Madalot]

I have a muscular dystrophy and do have Trilogy questions. I went from an S9 ST auto to trilogy avaps ae. As per usual, the RT that brought it out was none too educated on it. First of all, there was no humidifier included. She told me the bacterial filter, was some sort of humidity function. (?). Ya right. Then she didn't even recognize the tubing for the trilogy that connects to a F&P humidifier.

I could not find the info on the main page here for unlocking the menu, can someone direct me?

I'm trying to adjust from ST, to the avaps ae. My settings were also just doubled, so it's a lot to adjust to at once. My muscles seem to be more sore with the new mode and I'm wondering if this is another thing an MD patient shouldn't be using?. My pulmo is not familiar with my disease. My son who has the same disease and the same machine (better pulmo dr) is set for ST with humidifier.

Welcome to the forum. I have been on the Trilogy since February 2010 so I've become very knowledgeable about it. I CAN help you, but will have to reply in more detail later today.

Just wanted you to know I had seen this and will help you however I can. If you want, you can PM me as well.

[Swharlow]

I'm having trouble sending a pm. The back up rate is too high. How do I get past menu lock to lower it

[Lucyhere]

I'm having trouble sending a pm. The back up rate is too high. How do I get past menu lock to lower it

Go to Control Panel

Click on Board Preferences

Read down and in the middle of the page you will see something like... allow private messages

Click on Yes

Doing that will allow you to send and receive private messages

[Madalot]

I'm having trouble sending a pm. The back up rate is too high. How do I get past menu lock to lower it

I sent you a PM.