Replies to This Discussion

Permalink Reply by susan mccord on August 17, 2009 at 7:54pm

Hi Amott--I don't know how old your mom is, but I'm 67 and ON CPAP for life. When you see her, tell her I said "Even old dogs can learn new tricks!"--I'm walking proof of that. Also, I stopped breathing for well over a minute during my sleep study too.....

Susan McCord :-)

amott1973 said:

I know what you mean! It is a powerful thing to see, and I can only imagine how much it would have impacted the person watching the video of themselves or a loved one. I sent the link to my mom and I think it made a difference for her. She emailed me back that she would use her mask anyway. I'm going to visit her next weekend so we'll see how she's doing on it. She has apnea every bit as bad as the guy in the video, if not worse. I've sat and watched the clock while she stopped breathing, sometimes for well over a minute.

I think it's so wonderful for them to have put this video online. It has certainly made a difference for lots of people I'd say.

Brett, if you don't want to put in the entire video (which actually can be a copyright issue) you could just include the link there. As long as you have internet connection on the computer where you're presenting you can do it that way.

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Permalink Reply by susan mccord on August 18, 2009 at 11:01am

Lala, if you're getting shots of cold up your nose, and if the nose insert mask bugs you, you can switch to another mask. I have a full nasal mask which takes periodic minor adjustment for leaks, but once I got over some claustrophobia, it works fine for me. Those nasal things that poke into your nose bug me something fierce!! Check with your DME and see what other options you may have. They should have a WIDE range of masks and take the time to fit you well.

Don't give up! It's really hard getting started and maintaining with all this stuff. But there are so many people who are having success, that I know damn well I can do it somehow. And so can you. You sound like a VERY strong woman to me. 'Ya know, the way I think about it sometimes is just "Piss on apnea--this is MY life and I'm gonna do whatever it takes to keep apnea from ruining it". (wonder if I'll get in trouble for using that word???). But it's TRUE. I'm just NOT gonna give up, especially after seeing that video on SG. THAT was my primary motivator. I'm not gonna live with that fear. Call your DME and insist on a re-fitting if you think that's what you need.

Susan McCord :-)

susan mccord said:

Hi Amott--I don't know how old your mom is, but I'm 67 and ON CPAP for life. When you see her, tell her I said "Even old dogs can learn new tricks!"--I'm walking proof of that. Also, I stopped breathing for well over a minute during my sleep study too.....

Susan McCord :-)

amott1973 said:

I know what you mean! It is a powerful thing to see, and I can only imagine how much it would have impacted the person watching the video of themselves or a loved one. I sent the link to my mom and I think it made a difference for her. She emailed me back that she would use her mask anyway. I'm going to visit her next weekend so we'll see how she's doing on it. She has apnea every bit as bad as the guy in the video, if not worse. I've sat and watched the clock while she stopped breathing, sometimes for well over a minute.

I think it's so wonderful for them to have put this video online. It has certainly made a difference for lots of people I'd say.

Brett, if you don't want to put in the entire video (which actually can be a copyright issue) you could just include the link there. As long as you have internet connection on the computer where you're presenting you can do it that way.

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Permalink Reply by susan mccord on August 18, 2009 at 4:06pm

Lala--Do you have a recliner? If so, and if you're comfortable in it, you might try "going to bed" there with your CPAP stuff on. I don't know what helps you sleep ordinarily--for some people it's TV, some like me, reading. For some it's music or for others, total darkness and/or total quiet. Think about what might be a distraction without keeping you awake. Sounds like your bedroom is becoming your enemy if you're "dreading" to go in there. Just a thought. It's hard to know what may help, but some kind of familiar distraction might help you re-focus a little.....

I totally understand the exhaustion thing, honey. I really do. It's getting to the point with me where I can't remember what it felt like to feel good.....there are a lot of people on here who know what you're struggling with. That may or may not be helpful to you in the deep of the night, but just know you are SO not alone with this.....hang in there....

Susan McCord :-)



susan mccord said:

Hi Amott--I don't know how old your mom is, but I'm 67 and ON CPAP for life. When you see her, tell her I said "Even old dogs can learn new tricks!"--I'm walking proof of that. Also, I stopped breathing for well over a minute during my sleep study too.....

Susan McCord :-)

amott1973 said:

I know what you mean! It is a powerful thing to see, and I can only imagine how much it would have impacted the person watching the video of themselves or a loved one. I sent the link to my mom and I think it made a difference for her. She emailed me back that she would use her mask anyway. I'm going to visit her next weekend so we'll see how she's doing on it. She has apnea every bit as bad as the guy in the video, if not worse. I've sat and watched the clock while she stopped breathing, sometimes for well over a minute.

I think it's so wonderful for them to have put this video online. It has certainly made a difference for lots of people I'd say.

Brett, if you don't want to put in the entire video (which actually can be a copyright issue) you could just include the link there. As long as you have internet connection on the computer where you're presenting you can do it that way.

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Permalink Reply by susan mccord on August 18, 2009 at 4:13pm

Lala--I just reread your description of trying to get comfortable, etc. That's classic--it should be published in every medical book and in any literature that covering OSA. (Like THAT would happen!) While you're beached and stressing why don't you write some stuff down. You might have a book there. I'm serious!!

Susan McCord

susan mccord said:

Lala, if you're getting shots of cold up your nose, and if the nose insert mask bugs you, you can switch to another mask. I have a full nasal mask which takes periodic minor adjustment for leaks, but once I got over some claustrophobia, it works fine for me. Those nasal things that poke into your nose bug me something fierce!! Check with your DME and see what other options you may have. They should have a WIDE range of masks and take the time to fit you well.

Don't give up! It's really hard getting started and maintaining with all this stuff. But there are so many people who are having success, that I know damn well I can do it somehow. And so can you. You sound like a VERY strong woman to me. 'Ya know, the way I think about it sometimes is just "Piss on apnea--this is MY life and I'm gonna do whatever it takes to keep apnea from ruining it". (wonder if I'll get in trouble for using that word???). But it's TRUE. I'm just NOT gonna give up, especially after seeing that video on SG. THAT was my primary motivator. I'm not gonna live with that fear. Call your DME and insist on a re-fitting if you think that's what you need.

Susan McCord :-)

susan mccord said:

Hi Amott--I don't know how old your mom is, but I'm 67 and ON CPAP for life. When you see her, tell her I said "Even old dogs can learn new tricks!"--I'm walking proof of that. Also, I stopped breathing for well over a minute during my sleep study too.....

Susan McCord :-)

amott1973 said:

I know what you mean! It is a powerful thing to see, and I can only imagine how much it would have impacted the person watching the video of themselves or a loved one. I sent the link to my mom and I think it made a difference for her. She emailed me back that she would use her mask anyway. I'm going to visit her next weekend so we'll see how she's doing on it. She has apnea every bit as bad as the guy in the video, if not worse. I've sat and watched the clock while she stopped breathing, sometimes for well over a minute.

I think it's so wonderful for them to have put this video online. It has certainly made a difference for lots of people I'd say.

Brett, if you don't want to put in the entire video (which actually can be a copyright issue) you could just include the link there. As long as you have internet connection on the computer where you're presenting you can do it that way.

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Permalink Reply by susan mccord on August 19, 2009 at 8:23am

Good for you! It's always been a big help to me too. SG is a pay-it-forward deal--one of these days you'll be getting a gratitude email just like the one you sent to me!! Good luck--be sure to get a "perty" one!!!

Susan McCord :-)

susan mccord said:

Lala--I just reread your description of trying to get comfortable, etc. That's classic--it should be published in every medical book and in any literature that covering OSA. (Like THAT would happen!) While you're beached and stressing why don't you write some stuff down. You might have a book there. I'm serious!!

Susan McCord

susan mccord said:

Lala, if you're getting shots of cold up your nose, and if the nose insert mask bugs you, you can switch to another mask. I have a full nasal mask which takes periodic minor adjustment for leaks, but once I got over some claustrophobia, it works fine for me. Those nasal things that poke into your nose bug me something fierce!! Check with your DME and see what other options you may have. They should have a WIDE range of masks and take the time to fit you well.

Don't give up! It's really hard getting started and maintaining with all this stuff. But there are so many people who are having success, that I know damn well I can do it somehow. And so can you. You sound like a VERY strong woman to me. 'Ya know, the way I think about it sometimes is just "Piss on apnea--this is MY life and I'm gonna do whatever it takes to keep apnea from ruining it". (wonder if I'll get in trouble for using that word???). But it's TRUE. I'm just NOT gonna give up, especially after seeing that video on SG. THAT was my primary motivator. I'm not gonna live with that fear. Call your DME and insist on a re-fitting if you think that's what you need.

Susan McCord :-)

susan mccord said:

Hi Amott--I don't know how old your mom is, but I'm 67 and ON CPAP for life. When you see her, tell her I said "Even old dogs can learn new tricks!"--I'm walking proof of that. Also, I stopped breathing for well over a minute during my sleep study too.....

Susan McCord :-)

amott1973 said:

I know what you mean! It is a powerful thing to see, and I can only imagine how much it would have impacted the person watching the video of themselves or a loved one. I sent the link to my mom and I think it made a difference for her. She emailed me back that she would use her mask anyway. I'm going to visit her next weekend so we'll see how she's doing on it. She has apnea every bit as bad as the guy in the video, if not worse. I've sat and watched the clock while she stopped breathing, sometimes for well over a minute.

I think it's so wonderful for them to have put this video online. It has certainly made a difference for lots of people I'd say.

Brett, if you don't want to put in the entire video (which actually can be a copyright issue) you could just include the link there. As long as you have internet connection on the computer where you're presenting you can do it that way.

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Permalink Reply by wallace j smith jr on August 19, 2009 at 2:36pm

i have know personnally two people that have died as a result of untreated sleep apnea!! its a sad loss...one of them was my dad!!!

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Permalink Reply by susan mccord on August 19, 2009 at 4:36pm

Oh, I'm SO sorry for your loss, Wallace. It's our worst nightmare, and it must be even more difficult for you, on a # of levels. I'm really glad you're on SG. Don't know how long you've been here--I've been on about 6 weeks, I think. It's the best source of support and info I could have ever hoped for (begged for is more like it!).

Thank you for sharing about your experience with your dad. That's just heartbreaking for all of us who "get it" now.....

I'd like it if you'd send me a Friends request on SleepGuide. Up to you, of course. I'm just sayin'.

Susan McCord :-)



wallace j smith jr said:

i have know personnally two people that have died as a result of untreated sleep apnea!! its a sad loss...one of them was my dad!!!

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