Are AWAKE groups outdated?

rock and roll,

You hit all the major points from this thread right on target. Couldn't have said it better myself!

There are some things noticeably missing from all your posts as to why forums are better than AWAKE meetings. Meetings are not daily/nightly, but, what? Monthly. Things happen to people on CPAP EVERY SINGLE DAY. Call the Dr. or RT? Sure and you'll have to wait a minimum of after hours or days or weeks, because the Dr./nurse/RT is out of the office, on vacation, or, the one I love for RTs "out in the field", when they had ME come in to the office after telling me they would deliver my stuff and being told by HQ that they didn't do field work anymore. Well, I imagine they still do home visits for patients who are bedridden on oxygen, etc. but try to get them to return a phone call or even get hold of them on their cell phone.

On a forum people get an answer within minutes or hours as to what to do.

Consider our national problem right now of high gas prices. Will people still want to drive X amount of miles to attend meetings? I guessing not. And prices are supposed to keep rising through Spring. I shudder to think how this will affect the AWAKE meetings. I don't even have any idea how close a meeting would be to me, since I was never even told about them by my RT or Sleep Dr. or the Sleep Lab tech. First I knew about them was on a forum. But I didn't feel that they could meet my needs any better than the forum could in a much shorter amount of time. Gas has become such an issue, that my son's truck trade in price right now is $15,000 lower than the Book price for trade-in. In other words he has lots of negative equity.

And what about the people who can't or won't drive at night. I'm assuming meetings are generally held in the evenings..... Sure carpooling is an option.

But don't you think that there are also those people who want to remain anonymous behind a user name and an avatar? People who don't want physical proximity to what are initially strangers? What if someone has an annoying personality or is always butting in when someone else is trying to talk? Or someone else has extremely bad BO? What if you can't get your eyes off that woman's tiny, pinched mouth enough to listen to what she is saying? What I'm saying is that at meetings there are many distractions to learning.

I can see advantages too, to meetings. Hands on examination of newly manufactured mask models or machines. You can't do that on a forum. Your SLeep Dr. if you're lucky will have these, but maybe not. My DME doesn't. Speakers who are expert in the field to talk about new procedures and answer questions. Or tell you exactly what they are looking for in a Sleep Study. Meetings do open up a wealth of possibilites for public education.

People who do not own computers might benefit from meetings, or they could go to their local library and use the computers there. Even our town of 1500 has at least a dozen computers with high speed internet service at no charge.

I think the donation program for Awake in America is wonderful, but how many are even aware of it? Is it mentioned at the AWAKE meetings? Are links given to the Resmed video of how OSA works? Or is a similar film shown. Or are the usual pamphlets available at the Doctor's office all that is available. Is it emphasized at these meetings how OSA can affect the heart, weight, metabolic system and why? People want to understand their condition, as well as WHY they are that way with all their health problems. They want to know how to fix their mask for tonight's use. They want to know why the mask at the sleep lab was so uncomfortable or why they can't return the mask they can barely tolerate given them by the DME and what to do about it. NOW, not next month after fretting and worrying about it for maybe three weeks.

Sure they could make phone calls to volunteers who might man phones like a Hotline, but what if it's not a local number for someone and they have to pay for a toll call. Not everyone has cell phones either. What if there are more calls than there are volunteers and/or phones, and they get put on hold or keep getting busy signals. More frustration.

Forums never have a busy signal and you never get put on hold.

The one thing that Forums and meetings have in common, is that in the case of OSA and Sleep Apnea with its other causes, there will always be newcomers to the diagnosis, with new people wanting answers, and hopefully, longtime users available to help them, kind of passing the learning on down the line. So that people will continue to learn until the end of time.

But I can see meetings in the physical sense of the word becoming obsolete, and completely technologically organized and achieved. Maybe like a video-conference.

I will throw in one thing about internet support. Some of the "answers" I see here are like gonzo. Just make sure you read the disclaimer at the bottom. One of these days somebody's really gonna get hurt.

Dave, I agree absolutely with you on that. I've seen such "answers" on every apnea message board including this one and the ASAA board. I've posted my own share of "gonzo answers" without doubt.

A lot of people are already getting hurt at the hands of many "sleep" professionals, including some board certified sleep doctors. It happens both ways. Blind trust in the professionals can be just as life-threatening as being blind to the disclaimer "at the bottom" on internet message board support sites.

I do feel that there's no one-size-fits-all solution to "support". Live support meetings, internet support sites; knowledgeable, practical support by the DMEs, sleep clinics, doctors...the more, the better.

I agree with mikesus that doctors and health care professionals are far more apt to direct people to the ASAA message board than to boards sponsored by online stores, no matter how good other message boards might be. I'm glad to see the ASAA message board available to a wider number of apnea affected people and am happy to see it growing so well.

That growth means a LOT of people who would otherwise be adrift and perhaps give up have been sent to a source of help. From there they can also run across mentions from time to time about other good message boards - like this one and the TAS board....boards they might never become aware of had they not first been sent by their doctor or DME to the ASAA site.

OK, I thought I'd lighten the mood.

These are all support groups, online or otherwise. Anywhere one person helps another, it's support.

So, to amuse you on the subject of support groups, enjoy:


Linda

LOL Turkeys like the way they is and we like them basted well You have all pointed out the benefits of both kinds of support . Even DMEs are getting the word about these forums. I mentioned CPAPTalk to mine and she said she found out about it during the conference a few months ago and it was a good thing for me to be reading. Now can we move onto the subject of why we have a post office now that there is email?

mikemoran wrote: ..... Now can we move onto the subject of why we have a post office now that there is email?

Haha!

Well as much as we might think post offices are obsolete, they can't be (besides the package thing). There are a lot of people out there that don't have or can't afford computers and internet, believe it or not. I have several friends who don't have them, because food, gas, clothing and housing are priorities. Now you might say that is a small minority of people. You'd be surprised. But I do appreciate your sentiment! Email sure is helping, isn't it?

I'm Baaaaack!
About 35 years ago the sport of heavyweight boxing enjoyed an unprecedented popularity not seen before or since. It was due entirely to the efforts of a single man, Mohammed Ali. Love him or hate him, right or wrong, people knew who he was. A lot of people. He was the most recognized man on the face of the earth. And people listened.

We have had spirited debate here on this forum. I think that is good. No, I think that is great. It is essential. It is essential because we have a mission. That mission is to get the word out to a lot of people. People who have problems. People who know they have problems. People who don't know they have problems.

So you know what? I'm going to continue to fan the flames, to keep this and any other topic in the limelight if it accomplishes our goals. Do you hear me? OUR goals.

Mr. Rock and Roll, you are a great poster, offer great help and I have great respect for your opinions. Always will. However, I also said:

The internet forums are a great source of support. Tons of info, instant answers, some lay people here are better than the so-called pros.

And as a matter of fact, I am a frequent contributor to the forums, because I too, am concerned about the performance of my own profession and feel a responsibility to right the wrongs. And you guys should feel the same way, even within your forum. No that's wrong. Our forum. Shoot, during my last Sleep Support Meeting, I posted the list of websites to my support group. I'm the biggest supporter in the profession you have.

But again, it's not about me. It's not about you. It's about the mission.

So let's yell, scream, tell Linda she wears Army boots, anything that brings attention to us. I know she won't mind, cause she, like me, understands that when the limelight is on us, we are simply a mirror to direct that beam to where it's supposed to go.
deltadave
PS- Linda, your shoelaces are untied.

deltadave wrote:I'm Baaaaack! ......
But again, it's not about me. It's not about you. It's about the mission. ....

So let's yell, scream, tell Linda she wears Army boots, anything that brings attention to us. I know she won't mind, cause she, like me, understands that when the limelight is on us, we are simply a mirror to direct that beam to where it's supposed to go.
deltadave
PS- Linda, your shoelaces are untied.

Dave, you silly twerp!
Yes, you all feel free to call me anything in the book. Just call me.
I keep coming back to here because Rock & Roll shamed me into it! Thanks for those emails, buddy!

.... are my shoelaces really untied? ....


Linda
(who likes to come back here to visit her peeps)

delta dave,

A good debate is what I like most! I am in marketing after all. We get nowhere without being proactive.

And if I have to shame someone to keep them active on the list I will,

rock and roll wrote: .... And if I have to shame someone to keep them active on the list I will,

Shame away, old buddy, old pal! You're the best!
er, I mean, you're great!

L.

LDuyer wrote:There are a lot of people out there that don't have or can't afford computers and internet, believe it or not.

I know a lot of people who have computers & internet and all they use it for is e-mail and checking weather & sports scores. A lot of them are scared to use on line support groups because they don't want to put any information out there about themselves. Sometimes its because of the fear caused by news reporters on teens, on-line stalking, on-line identity theft and such. Others are just very private people who don't want to chance anyone finding out who they are.

One issue that no one has mentioned is that if you say something in a local support group only the people there hear it and most of them will not remember what you said the next day for the most part and no one will remember what you said word for word. If you post a message in an on-line support group its there for everyone to read forever. Sure you may be able to go back and delete the message off that board but if the search engines like Google have already picked it up its too late- your message could haunt you for the rest of your life. Most of the time it doesn't matter since it is difficult to link a post to real person to a post but not impossible. What if a potential employer somehow figure that you have apnea because he recognizes you from the forum and now decides not to offer you the job because of? Maybe its not due to the apnea since he has it himself but because you posted that you like Yankees and he's a Mets fan. What if you're ex-spouse uses what you post about falling asleep while driving against you in a custody suit?

Members here are fairly computer literate and comfortable using the internet for just about everything, including shopping as our host's on line store proves. Most of us enjoy learning and researching about our medical problems so that we can be an active participant in our health care. A lot of people want to have their medical care taken for them- the less they have to do the better. For others its a time issue- how much time per month do most active participants in this forum spend here? I am guessing its much more then the 60-90 minutes it would take for a local support group meeting. If someone is more comfortable having information spoon fed to them once a month at a local support group why is it a concern for us?

I did go to a couple local support meetings and one big advantage was seeing and handling all the different types of masks & machines which is something that cannot be replicated on line. I was also able to talk to sales reps and get a more candid opinion then we get in the on-line chats & interviews with the company reps. Some people are the "I have to see it to believe it" types...those are usually the older gentlemen who's wife had dragged to the meeting so he could see that other people had apnea and were doing okay with xPAP. People like that are not going to believe anything they read on-line, no matter how convincing we are.

I don't think any one type of support group is inheiritly better then another just as no one xPAP or mask is right for everyone. Each person needs to find what works best for them. We should be thankful that ASAA has been sucessful with their new on-line forum, The more people who are educated about Sleep Apnea and are compliant with using xPAPS the better all around. Think about if each person diagnosed with apnea gets one other person to talk to their doctor and gets properly diagnosed & treated and this continues, before long one person has influenced many, many more. Each additional person is one less sleepy driver on the road or performing a job were nodding off could be detrimental to many more people. Its less in health care cost for everyone- we may have health insurance in the US but the cost of healthcare is passed on to us in the prices we pay for good & services. Its also more potential profit for the manufactures...the more potential profits means more new machines & masks and lower prices overall for the consumer at the manufactures compete for their share of the growing xPAP market.

christinequilts, you're exactly on target... as usual!