CPAPtalk.com

Free goodies ......, probably $10 hot dogs and $5 cokes

Nothing is FREE in this world

prodigyplace wrote: ↑

Thu Aug 01, 2019 4:16 am

What is the purpose of your group?
Are you working to get legal blocks removed so apnea sufferers can have better control over their CPAP treatment? If you are not working on that then how are you meaningfully helping?

If you read the report, your questions will be answered. But the answer to your question is yes.
All of us are sleep apnea patients. I've been an advocate for sleep for decades. Yes, my friends call me Mother T, and I have no problem with the name.

Read our first ever Year-End Report detailing 2018 activities, achievements, and lessons learned. Click here to view http://bit.ly/2RAaIAi We hope that you will join us in 2019 and beyond, working together to create a better life for everyone living with sleep apnea. It can be viewed here: https://www.facebook.com/groups/AWAKESleepSupport/

prodigyplace wrote: ↑

Thu Aug 01, 2019 2:09 pm

chunkyfrog wrote: ↑

Thu Aug 01, 2019 12:27 pm

The apnea support group that I attended falsely represented autopap machines as undesireable.
They were shocked when I pointed out the fact that ANY APAP can be run in cpap mode--
They also had a problem with patient adjustment and data access.
We were "disinvited" to future meetings..
The truth was a bit too much . . .

So, they were NOT patient focused, but profit focused.

Why am I not surprised??

Not all support groups are official ASAA AWAKE groups. The name AWAKE is used by others as well. Anyone can start a support group with their own ideas. ASAA gives educational support to the official groups.
ASAA is a not-for-profit education and advocacy group.

You can misinterpret or hate what I post, or look somewhere else to pick on words. I will still post. I'm not afraid, nor have anything to hide regarding ASAA. Transparency is real, and the summit is free to patients and their caregivers. Meals are provided.

I so wish that all the energy used for posting negativity would be bottled and used to help move things forward for sleep apnea patients, then we --- all of us patients win.

Feel free to contact me with any questions or concerns: tshumard@sleepapnea.org

A little transparency:

https://www.give.org/charity-reviews/na ... n-dc-45987

JPB

jimbud wrote: ↑

Fri Aug 02, 2019 9:48 am

A little transparency:

https://www.give.org/charity-reviews/na ... n-dc-45987

JPB

Yes, JIMBUD- transparency! Nothing to hide.

The auditors are not finished with their reporting, but these issues are addressed.

We are a small group that volunteers much of our time to help YOU and all people with sleep apnea. Why can't you see this? Have you even ever talked to me? No.

Never did I feel that an invitation for people to participate and come together to address sleep apnea issues would cause such drama.

Did you even bother to read the survey results from last year presented to the FDA? Me thinks not.

Makes me smile. Come one come all. In the past AWAKE was set up by physicians married to one intervention. No Mas. This is NOW. The Agenda will be released soon and will have a focus on pathways to pediatric cures , multidisciplinary integrative treatment solutions, and an all star data patient panel moderated by Bray Patrick Lake Rock Star (invite out to Jedi Mark). If you are not at the table you wind up on the menu. The round robin multidisciplinary education throughout the day will be a breath of fresh air for our community as we overlook the golden gate bridge and the number once suicide spot in the world blanketed in a cognitive fog right next door to the US PRESIDIO National Military Cemetery. This will be an AWAKENING together 91919 this SLEEPtember 2REmember @sleepapneaorg.

Grateful Eyes of the Sleep World,

aa

Mother! Why are you shouting my name?
You said transparency first.
I merely looked and reported.
JPB

jimbud wrote: ↑

Fri Aug 02, 2019 10:05 am

Mother! Why are you shouting my name?
You said transparency first.
I merely looked and reported.
JPB

Not shouting. Simply emphasis. You seem to enjoy drama. I won't take your bait again. Never have I been treated with such disrespect just for trying to help include this community here. I know not everyone is hostile, so I will keep posting for the good, and ignore confrontational behavior.

That would probably be best.
Your slip is starting to show.

JPB

This is getting FUN!
Anyone for popcorn ?---BUTTERED, with real butter!

Why all the negativity? Someone posted an invite. You are not familiar with ASAA it takes one minute to look up the organization and find out that it is a effective patient-centered advocacy group.

This is not a patients group. It is medical personnel pretending to help. How many new CPAP patients do you know that would really benefit from quarterly or monthly meetings?
Most people here needed at least twice a week help.

prodigyplace wrote: ↑

Fri Aug 02, 2019 6:24 pm

This is not a patients group. It is medical personnel pretending to help. How many new CPAP patients do you know that would really benefit from quarterly or monthly meetings?
Most people here needed at least twice a week help.

Post info about it once or maybe twice, helpful??? After that it begins to smell like old spoiled Spam! Jim

prodigyplace wrote: ↑

Thu Aug 01, 2019 4:16 am

Are you working to get legal blocks removed so apnea sufferers can have better control over their CPAP treatment?

MotherT ~~~ this is such a great place with little censorship or moderation which attracts the best and brightest over and over again.

...amazingly some of the best and brightest even use cpap.

If you've laughed off your initial reaction of feeling offended and disrespected, *I* read through this whole (entertaining) thread just to find your answer to prodigyplace's question. (I think it was the first reply you received on this thread.) ...???... but I don't think you did answer?

I so hope you will consider posting again with your personal feeling and your groups feelings regarding that very important question.

~~~grace

chunkyfrog wrote: ↑

Thu Aug 01, 2019 8:30 am

. . .
When patients are having difficulties, who is available to help?
This forum is active 24/7, when patients are wrestling with the mask,
machine, and a myriad of other problems.
How is it that all those professionals are busy stuffing their pockets by day---
are never in the office when they are NEEDED?

The entire issue is that apnea is a SLEEP disorder, and those paid to help-----DO NOT.
They have closed the offices and gone home.
Most of us are here because our medical teams have FAILED us---and quite shamefully.
Over and over, we have seen that this is too often standard procedure.
And yet; only excuses . . .