Why do we abandon ship?

49er wrote:

Sorry, maybe doing volunteer work at the Sleep Apnea Association and processing applications from people who can't afford machines has greatly brought this all home. And if they need a bipap machine, they will be waiting a long time for it.

By the way, I don't mean to sound like I am bragging because I volunteered. What I have done is negligible compared to what many people do in the volunteer arena.


49er

I'm showing my ignorance, but I never new about the Sleep Apnea Association, I would like to volunteer if they have a chapter locally, could you post (or pm me) some info. I would love to volunteer.

Jen

jencat, while you're waiting to hear back frm 49er check this out: http://www.sleepapnea.org/support/getting-involved.html

As a therapist I've been thinking for some time about offering a local support group. I need to be a little further along on this very steep learning curve but it's on my to do list. 49er, you've inspired at least a few of us to start pursuing additional ways of helping beyond our contributions to this forum. Thanks!

(*I do feel some ambivalence about the ASAA because of their position on patients learning how to change their pressure settings and the prohibition on their sleep apnea forum from posting anything about learning how to use the clinician menu on your machine. Nevertheless, I thought the above was a good place to start finding out about ways to volunteer.)

jencat824 wrote:

49er wrote:

Sorry, maybe doing volunteer work at the Sleep Apnea Association and processing applications from people who can't afford machines has greatly brought this all home. And if they need a bipap machine, they will be waiting a long time for it.

By the way, I don't mean to sound like I am bragging because I volunteered. What I have done is negligible compared to what many people do in the volunteer arena.


49er

I'm showing my ignorance, but I never new about the Sleep Apnea Association, I would like to volunteer if they have a chapter locally, could you post (or pm me) some info. I would love to volunteer.

Jen

Hi Jen,

I just sent you a PM. Not ignorant at all as many people aren't familiar with them.

Here is the website:

http://www.sleepapnea.org/index.html

49er

lazer wrote:Ok, my bad. I won't do an AVI and [delete] my post. I don't believe in that kind of censorship so I'll stand to be the ass on this one and let everyone see.

/Carry on with serious topic.

Hi lazer and all,

Probably I am pulling "a lazer" and going off topic and "responding to my first instinct" rather than being able to process all the inputs from such things as relevance, emotional impact to others, all of that. OSA is known to cause problems with executive functioning - part of which is the "ability to suppress the first response (reaction)". I also think I have noticed that my ability to take into account the emotional impact of what I am doing has on others is specifically affected. I think we loose the ability to be emotionally aware. You see that a lot on these forums. A very nice guy goes all horses behind in a heartbeat.

In lazer's case I know he works very hard to be healthy. I know he loves to have a good time and love him for that.

I also know he uses a breathing volume unaware PAP which automatically raises his pressure on signs I have found to be indicative of over breathing. That would make the CO2 maintenance issues worse. With CO2 out of his system his brain is starved of blood and oxygen[1]. I think that is part of his current – and strangely now chosen “horses behind” status.

So now I appeal to you lazer. Please obtain a breathing volume aware PAP or at least pursue eucapnic breathing retraining and manage your PAP use being aware of breathing volumes and stability using your nightly data. You, me, and all others will be happier and healthier for that.

I highly appreciate you lazer!

Todzo

1. http://www.ncbi.nlm.nih.gov/pubmed/19211719

kaiasgram wrote:jencat, while you're waiting to hear back frm 49er check this out: http://www.sleepapnea.org/support/getting-involved.html

As a therapist I've been thinking for some time about offering a local support group. I need to be a little further along on this very steep learning curve but it's on my to do list. 49er, you've inspired at least a few of us to start pursuing additional ways of helping beyond our contributions to this forum. Thanks!

(*I do feel some ambivalence about the ASAA because of their position on patients learning how to change their pressure settings and the prohibition on their sleep apnea forum from posting anything about learning how to use the clinician menu on your machine. Nevertheless, I thought the above was a good place to start finding out about ways to volunteer.)

Totally understand your ambivalence as I have very similar feelings. At some point, I will say something. It will be an interesting discussion to say the least.

49er

Todzo wrote:

lazer wrote:Ok, my bad. I won't do an AVI and [delete] my post. I don't believe in that kind of censorship so I'll stand to be the ass on this one and let everyone see.

/Carry on with serious topic.

Hi lazer and all,

Probably I am pulling "a lazer" and going off topic and "responding to my first instinct" rather than being able to process all the inputs from such things as relevance, emotional impact to others, all of that. OSA is known to cause problems with executive functioning - part of which is the "ability to suppress the first response (reaction)". I also think I have noticed that my ability to take into account the emotional impact of what I am doing has on others is specifically affected. I think we loose the ability to be emotionally aware. You see that a lot on these forums. A very nice guy goes all horses behind in a heartbeat.

In lazer's case I know he works very hard to be healthy. I know he loves to have a good time and love him for that.

I also know he uses a breathing volume unaware PAP which automatically raises his pressure on signs I have found to be indicative of over breathing. That would make the CO2 maintenance issues worse. With CO2 out of his system his brain is starved of blood and oxygen[1]. I think that is part of his current – and strangely now chosen “horses behind” status.

So now I appeal to you lazer. Please obtain a breathing volume aware PAP or at least pursue eucapnic breathing retraining and manage your PAP use being aware of breathing volumes and stability using your nightly data. You, me, and all others will be happier and healthier for that.

I highly appreciate you lazer!

Todzo

1. http://www.ncbi.nlm.nih.gov/pubmed/19211719

Thank you Todzo for standing up for me (I think)

What you wrote went totally over my head though.

Isn't the APAP I have now "breathing volume aware" or did you just make a funny at me at my expense?

Todzo wrote:

lazer wrote:Ok, my bad. I won't do an AVI and [delete] my post. I don't believe in that kind of censorship so I'll stand to be the ass on this one and let everyone see.

/Carry on with serious topic.

Hi lazer and all,

Probably I am pulling "a lazer" and going off topic and "responding to my first instinct" rather than being able to process all the inputs from such things as relevance, emotional impact to others, all of that. OSA is known to cause problems with executive functioning - part of which is the "ability to suppress the first response (reaction)". I also think I have noticed that my ability to take into account the emotional impact of what I am doing has on others is specifically affected. I think we loose the ability to be emotionally aware. You see that a lot on these forums. A very nice guy goes all horses behind in a heartbeat.

In lazer's case I know he works very hard to be healthy. I know he loves to have a good time and love him for that.

I also know he uses a breathing volume unaware PAP which automatically raises his pressure on signs I have found to be indicative of over breathing. That would make the CO2 maintenance issues worse. With CO2 out of his system his brain is starved of blood and oxygen[1]. I think that is part of his current – and strangely now chosen “horses behind” status.

So now I appeal to you lazer. Please obtain a breathing volume aware PAP or at least pursue eucapnic breathing retraining and manage your PAP use being aware of breathing volumes and stability using your nightly data. You, me, and all others will be happier and healthier for that.

I highly appreciate you lazer!

Todzo

1. http://www.ncbi.nlm.nih.gov/pubmed/19211719

Todzo,

Totally agree with everything you said and as one who has taken threads off topic, I probably was the last person who should have said back to regularly scheduled programming.

49er

Todzo wrote:I would love a citation on that research - please.

NEVER!!!!

lazer wrote:Thank you Todzo for standing up for me (I think)

I think not! I'm pretty sure he called you brain damaged.

What you wrote went totally over my head though.

That's because none of it makes any sense!!

Isn't the APAP I have now "breathing volume aware" or did you just make a funny at me at my expense?

I don't think he meant to make fun of you, or even to call you brain damaged.

BTW, I must be brain damaged myself, as I can't even figure out what you did "wrong" in the first place.

Todzo, here's some help for your professed impairment in taking into account the emotional impact of what you're saying on others. I will bold every insult in what you wrote:

Todzo wrote:Probably I am pulling "a lazer" and going off topic and "responding to my first instinct" rather than being able to process all the inputs from such things as relevance, emotional impact to others, all of that. OSA is known to cause problems with executive functioning - part of which is the "ability to suppress the first response (reaction)". I also think I have noticed that my ability to take into account the emotional impact of what I am doing has on others is specifically affected. I think we loose the ability to be emotionally aware. You see that a lot on these forums. A very nice guy goes all horses behind in a heartbeat.

In lazer's case I know he works very hard to be healthy. I know he loves to have a good time and love him for that.

I also know he uses a breathing volume unaware PAP which automatically raises his pressure on signs I have found to be indicative of over breathing. That would make the CO2 maintenance issues worse. With CO2 out of his system his brain is starved of blood and oxygen[1]. I think that is part of his current – and strangely now chosen “horses behind” status.

So now I appeal to you lazer. Please obtain a breathing volume aware PAP or at least pursue eucapnic breathing retraining and manage your PAP use being aware of breathing volumes and stability using your nightly data. You, me, and all others will be happier and healthier for that.

I highly appreciate you lazer!

Todzo

Todzo, I want citations about all this nonsense about Lazer's therapy, the breathing volumes causing his impairments, and the eucapnic breathing crap! ALL of it!!

lazer wrote:
Isn't the APAP I have now "breathing volume aware" or did you just make a funny at me at my expense?

Hi lazer!

In fact your APAP is not breathing volume aware. In fact, that scares me for your sake! I believe APAP's are dangerous machines.

I am very serious about this. I dearly want to see my friends healthy and getting along well.

Take care!

Todzo

Thanks SleepingUgly,

I'm still busy googling: https://www.google.com/search?q=eucapnic%20breathing



Nothing makes sense to me anymore. I think I am losing it.

To Todzo: What kind of a unit do I need for it to be a "Breathing Aware" PAP Sorry, I'm a little slow today. Might be the damaged brain tissues clashing.

lazer wrote:
To Todzo: What kind of a unit do I need for it to be a "Breathing Aware" PAP Sorry, I'm a little slow today. Might be the damaged brain tissues clashing.

Hi lazer!

I recall that Dr Barry Krakow mentions several models as being breathing volume aware in this interview: http://doctorstevenpark.com/expert-inte ... leep-apnea

I am setting up to re-listen to the interview and hope to post back in a while the specific area of the interview where he does that and mentions CO2 maintenance issues.

TTYL

Todzo

Todzo wrote:

lazer wrote:
To Todzo: What kind of a unit do I need for it to be a "Breathing Aware" PAP Sorry, I'm a little slow today. Might be the damaged brain tissues clashing.

Hi lazer!

I recall that Dr Barry Krakow mentions several models as being breathing volume aware in this interview: http://doctorstevenpark.com/expert-inte ... leep-apnea

I am setting up to re-listen to the interview and hope to post back in a while the specific area of the interview where he does that and mentions CO2 maintenance issues.

TTYL

Todzo

Thanks... I'm at work though and it's difficult for me to load up and listend to any podcasts or whatever so I'll await your update. Plus I need to save all my active brain tissues that aren't destroyed yet to concentrate on my job.

Peace!

Todzo wrote:

lazer wrote:
To Todzo: What kind of a unit do I need for it to be a "Breathing Aware" PAP Sorry, I'm a little slow today. Might be the damaged brain tissues clashing.

Hi lazer!

I recall that Dr Barry Krakow mentions several models as being breathing volume aware in this interview: http://doctorstevenpark.com/expert-inte ... leep-apnea

I am setting up to re-listen to the interview and hope to post back in a while the specific area of the interview where he does that and mentions CO2 maintenance issues.

TTYL

Todzo

Todzo,

Are you talking about the ASV machines?

49er

49er wrote:
Todzo,

Totally agree with everything you said and as one who has taken threads off topic, I probably was the last person who should have said back to regularly scheduled programming.

49er

Hi 49er,

My point is that we all have the tendency to go off topic - and do things we regret later. I am not the only one. You are not the only one. Lazer is not the only one.

I think we with OSA go from untreated to undertreated. I simply hope to help us find better treatment - of the very real physiological problems.

Have a great week!

Todzo