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Patients Stepping Up to Help Uneducated Masses

There is so much ignorance of sleep apnea. We here at this forum are the lucky few who actually know a little bit more than the average Joe about the condition. But every day, thousands of people are being diagnosed with sleep apnea and walking into the mine field that we all have experienced. My question is what can we as the educated patients do for these newcomers, and how do we reach them in time?

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I perfectly agree with your concern.It is quite unfortunate that more than 75 percent population of the world is 100 percent unaware of the dangers of sleep apnea. Millions die of heart attack and because of several other diseases and it is never diagnosed even if the sleep apnea was a major cause that led to such a casualty.
We all need to come up and contribute significantly.
I am going to try to get involved with my local AWAKE group. See where that takes me.
Rock Hinkle, somewhere here in the forum I posted some "beginner questions" I hope to have handed out to members of our local support group that I thought might give both members and hosts some direction for future meetings. Maybe that will help you w/a local AWAKE group presentation. Our support group has to start out at the most basic of basic level. The ignorance of the majority of members is appalling and frustrating even to me!!!

Those of us who are using xPAPs should attend these meetings, print out the list of questions I posted (I'll repost them in this thread in a bit) and WRITE in your answers and hand it to the support group leaders to let them see where YOU are at and to inspire them to present their own list of questions to find out the level of xPAP knowledge their using members are at.
FOOD FOR THOUGHT

After your sleep evaluation study did anyone set down with you with the printed results and explain them to you? Did you want them to?

After your xPAP titration study did anyone sit down with you with the printed results and explain them to you? Did you want them to?

Were you given a printed copy of your results with graphs (5+ pages) or just the doctor's dictated report (1-2 pages) or neither?

Do you know what an xPAP is? An APAP? A VPAP? A Bi-PAP?

Do you know the brand and model of xPAP machine you have?

Do you know the type and name of the xPAP mask you are using?

Do you know what your xPAP pressure is?

How many masks did you take home and try before you found THE one mask that was comfortable and relatively leak free?

How long have you been using this mask?

Have you gone back to your DME supplier for advice or assistance with your xPAP therapy?

Have you contacted your sleep lab or sleep doctor for advice or assistance with your xPAP therapy?

Do you feel you've gotten good service, advice and assistance from your DME supplier?

In what way could your local DME supplier be or have been of more assistance?

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In what way could your sleep doctor or sleep lab be or have been of more assistance?

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Did you have any problems navigating the Doctor/Insurance/DME minefield?

Have you visited any online sleep apnea support forums?

Which online sleep apnea forums have you visited?

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Which online sleep apnea forums do you prefer and would recommend to others?

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Do you look for the HON code at the health websites and forums you visit online?
Judy, maybe you want to re-post this helpful list to the new users group, or as an article?

Judy said:
Rock Hinkle, somewhere here in the forum I posted some "beginner questions" I hope to have handed out to members of our local support group that I thought might give both members and hosts some direction for future meetings. Maybe that will help you w/a local AWAKE group presentation. Our support group has to start out at the most basic of basic level. The ignorance of the majority of members is appalling and frustrating even to me!!!

Those of us who are using xPAPs should attend these meetings, print out the list of questions I posted (I'll repost them in this thread in a bit) and WRITE in your answers and hand it to the support group leaders to let them see where YOU are at and to inspire them to present their own list of questions to find out the level of xPAP knowledge their using members are at.
Which do you think would be the best place to post it, Mike?
i'd post it to both, personally, but if i had to choose one, i'd put it in the new users group.

Judy said:
Which do you think would be the best place to post it, Mike?
For me, CPAP therapy is like sharing the Gospel with people. I mostly share how wonderful my life is today compared to a time when nagging headaches, constant fatigue, and poor circulation was a part of my everyday life. People are more likely to attribute their health problems to other common known diseases like diabetes or circulatory problems. They are oblivious to the sleep apnea probably because they are unaware, or can't see how therapy will help.

My sleep study report has shown that I stopped breathing several times for almost TWO MINUTES! Now that's a whole lot of oxygen not making it to the brain, much less to the rest of your cells in your body. Stress and inflammation ensues, and the diabetes and heart condition worsens. People who even have a hint of sleeping problems, or are told they stop breathing or have erratic snoring, owe it to themselves to check in to a sleep study NOW!

After only a month, my blood glucose levels have become more stable, and I have way more energy now! Oh, and those headaches... gone now too! As educated patients, it is our responsibility to INSIST others check into this therapy if they show the right symptoms. I often carry a few brochures that I hand out as I share my story with them. I also post my experiences in blogs and other web communities whenever health and sleep disorders become a topic. It's really up to us...our experiences, our testimonies to enlighten the masses. It's up to us to convince them that snorkels can be "cool", and make good bedmates too! :-) God bless.
I thought I was the only one that called them "snorkels" but don't breathe through da mouth!

David Lauro said:
For me, CPAP therapy is like sharing the Gospel with people. I mostly share how wonderful my life is today compared to a time when nagging headaches, constant fatigue, and poor circulation was a part of my everyday life. People are more likely to attribute their health problems to other common known diseases like diabetes or circulatory problems. They are oblivious to the sleep apnea probably because they are unaware, or can't see how therapy will help.

My sleep study report has shown that I stopped breathing several times for almost TWO MINUTES! Now that's a whole lot of oxygen not making it to the brain, much less to the rest of your cells in your body. Stress and inflammation ensues, and the diabetes and heart condition worsens. People who even have a hint of sleeping problems, or are told they stop breathing or have erratic snoring, owe it to themselves to check in to a sleep study NOW!

After only a month, my blood glucose levels have become more stable, and I have way more energy now! Oh, and those headaches... gone now too! As educated patients, it is our responsibility to INSIST others check into this therapy if they show the right symptoms. I often carry a few brochures that I hand out as I share my story with them. I also post my experiences in blogs and other web communities whenever health and sleep disorders become a topic. It's really up to us...our experiences, our testimonies to enlighten the masses. It's up to us to convince them that snorkels can be "cool", and make good bedmates too! :-) God bless.
Margo and David , you're both from Hawaii. Have a local awake group there ?

Margo Lozoya said:
I thought I was the only one that called them "snorkels" but don't breathe through da mouth! David Lauro said:
For me, CPAP therapy is like sharing the Gospel with people. I mostly share how wonderful my life is today compared to a time when nagging headaches, constant fatigue, and poor circulation was a part of my everyday life. People are more likely to attribute their health problems to other common known diseases like diabetes or circulatory problems. They are oblivious to the sleep apnea probably because they are unaware, or can't see how therapy will help.

My sleep study report has shown that I stopped breathing several times for almost TWO MINUTES! Now that's a whole lot of oxygen not making it to the brain, much less to the rest of your cells in your body. Stress and inflammation ensues, and the diabetes and heart condition worsens. People who even have a hint of sleeping problems, or are told they stop breathing or have erratic snoring, owe it to themselves to check in to a sleep study NOW!

After only a month, my blood glucose levels have become more stable, and I have way more energy now! Oh, and those headaches... gone now too! As educated patients, it is our responsibility to INSIST others check into this therapy if they show the right symptoms. I often carry a few brochures that I hand out as I share my story with them. I also post my experiences in blogs and other web communities whenever health and sleep disorders become a topic. It's really up to us...our experiences, our testimonies to enlighten the masses. It's up to us to convince them that snorkels can be "cool", and make good bedmates too! :-) God bless.
Interestingly I met Margo through Twitter and directed her to your site. A group would be an interesting idea if we can roundup enough people.
Mike said:
Margo and David , you're both from Hawaii. Have a local awake group there ?

Margo Lozoya said:
I thought I was the only one that called them "snorkels" but don't breathe through da mouth! David Lauro said:
For me, CPAP therapy is like sharing the Gospel with people. I mostly share how wonderful my life is today compared to a time when nagging headaches, constant fatigue, and poor circulation was a part of my everyday life. People are more likely to attribute their health problems to other common known diseases like diabetes or circulatory problems. They are oblivious to the sleep apnea probably because they are unaware, or can't see how therapy will help.

My sleep study report has shown that I stopped breathing several times for almost TWO MINUTES! Now that's a whole lot of oxygen not making it to the brain, much less to the rest of your cells in your body. Stress and inflammation ensues, and the diabetes and heart condition worsens. People who even have a hint of sleeping problems, or are told they stop breathing or have erratic snoring, owe it to themselves to check in to a sleep study NOW!

After only a month, my blood glucose levels have become more stable, and I have way more energy now! Oh, and those headaches... gone now too! As educated patients, it is our responsibility to INSIST others check into this therapy if they show the right symptoms. I often carry a few brochures that I hand out as I share my story with them. I also post my experiences in blogs and other web communities whenever health and sleep disorders become a topic. It's really up to us...our experiences, our testimonies to enlighten the masses. It's up to us to convince them that snorkels can be "cool", and make good bedmates too! :-) God bless.
Round em up David. Spread the Gospel of apnea awareness to every Hawaiian island!

David Lauro said:
Interestingly I met Margo through Twitter and directed her to your site. A group would be an interesting idea if we can roundup enough people. Mike said:
Margo and David , you're both from Hawaii. Have a local awake group there ?

Margo Lozoya said:
I thought I was the only one that called them "snorkels" but don't breathe through da mouth! David Lauro said:
For me, CPAP therapy is like sharing the Gospel with people. I mostly share how wonderful my life is today compared to a time when nagging headaches, constant fatigue, and poor circulation was a part of my everyday life. People are more likely to attribute their health problems to other common known diseases like diabetes or circulatory problems. They are oblivious to the sleep apnea probably because they are unaware, or can't see how therapy will help.

My sleep study report has shown that I stopped breathing several times for almost TWO MINUTES! Now that's a whole lot of oxygen not making it to the brain, much less to the rest of your cells in your body. Stress and inflammation ensues, and the diabetes and heart condition worsens. People who even have a hint of sleeping problems, or are told they stop breathing or have erratic snoring, owe it to themselves to check in to a sleep study NOW!

After only a month, my blood glucose levels have become more stable, and I have way more energy now! Oh, and those headaches... gone now too! As educated patients, it is our responsibility to INSIST others check into this therapy if they show the right symptoms. I often carry a few brochures that I hand out as I share my story with them. I also post my experiences in blogs and other web communities whenever health and sleep disorders become a topic. It's really up to us...our experiences, our testimonies to enlighten the masses. It's up to us to convince them that snorkels can be "cool", and make good bedmates too! :-) God bless.

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