What Would You Change in Your xPAP Experiance?

chunkyfrog wrote:Maybe something like KickStart or Indie-Go-Go to get a non-profit started?

Thanks for the direction!! I think I will try to get some time with my way too busy daughter on this. She understands the non-profit process.

chunkyfrog wrote:I would consider an existing organization, but I have doubts about their philosophy.

Every time I have looked I have found only medical industry based organizations which are indeed of little if not negative usefulness.

chunkyfrog wrote:Do all the existing non-profits adhere to the "line" we so like to cross?

I have not looked in a while.

Thanks for getting me looking again!!!

Todzo

I would have lower expectations about feeling better. I was hoping to feel a lot better and I only, maybe, feel a little better. The disappointment on top of having to use a CPAP bothers me. I still use the CPAP though.

Todzo wrote:

quietmorning wrote:I would have kept up with the data better during the first year.

How did you learn about data?

I learned about data right here on cpap.com. I bought an encore viewer and a zeo - and was good to go. I seriously don't regret buying the zeo, I did, however think that the encore viewer was way overpriced and too limited. I love sleepyhead.

Todzo wrote:What do you believe the results of you using more data be if it had happened that first year?

After my sugery, my AHI skyrocketed. I confused the feeling of fatigue from apnea with what I was told to expect from the surgery. Had I been keeping up with my data, I would have known MUCH earlier that changes needed to be made, and I would have healed NORMALLY instead of incredibly slowly.

quietmorning wrote:I would have had an educated primary care physician and a cardiologist that would have sent me for a sleep study early on.

Todzo wrote:As one whose Obstructive Sleep Apnea was “discovered” by a shelter bunk mate I strongly second this!!! 10 to the 100th +

I honestly believe that my cardiologist knew - and just didn't want to refer me as he thought he'd lose a patient. He lost one, any way.

quietmorning wrote:I would change the fact that no one really thought sleep was necessary and thought the body didn't need it . . .a left over from earlier evolution or something - in the 70's, 80's and early 90's.

Todzo wrote:All very good points.

Thank you quietmorning!

Todzo

You caught me before my edit!! LOL. . . thank you, Todzo.

Todzo wrote:

quietmorning wrote:Actually - I'm starting over. . .I must have been somewhere else when I read this post. :-/

I would have definitely stayed on top of my data last year.

I had my mask picked for me by the tech at the titration study - I would have asked to try some other masks as I didn't know what was truly comfortable and well fitting as opposed to what I had. I think I would have liked to know what the tricks of THEIR trade are in order to catch the subtle manipulations - lol. . .I wish I had a book called: So, you've been set up for a sleep study, here's what you need to know before you go and before you leave - and have it cover all their tricks. . . the machine, the mask, everything . . .so that when I got the oxygen for the first time in forever, I would stop and think.

There. . .

That's what I would change. That and the heating in this house.

My daughter's long term vision has been to set up and manage a non-profit to do equine therapy. She is now in process for her Ph.D. She still has this in her sights.

Perhaps what we need is a non-profit Sleep Apnea patient advocacy group. The medical community is way too much of a monopoly. We need an equalizer, or two, or three!!

Thanks!

Todzo

I went to a meeting for caregivers of Alzheimer patients recently. The elderly and those who are cared for by others have an ombudsman. I bet, if the right avenues where looked at, there could be something similar for the apnea patient.

I'll do some looking around and get back to you on it.

Proceeds from a Cpap Encyclopedia taken largely from the questions asked and answered here on cpap.com, if agreed to by those who are here, could easily go into funding such a non-profit.

chunkyfrog and todzo,

I used to be a workshop trainer and writer. This is sooooo possible. So completely a can do.

Those with experience teaching those who don't have it - just as everyone does here.

Just organized into workshop form.

Uh. This is rolling! Wow, cool!

edm_msu wrote:I would have lower expectations about feeling better. I was hoping to feel a lot better and I only, maybe, feel a little better. The disappointment on top of having to use a CPAP bothers me. I still use the CPAP though.

Hi!

At almost ten years into CPAP use I am still finding ways to make my therapy better. I am also still finding ways to make my health better in general.

I think we are getting a bit closer to understanding the causes of Obstructive Sleep Apnea (OSA) as well as the causes of Upper Airway Resistance Syndrome which may well precede and I think is much more a part of OSA than is currently understood.

If we find the cause then we can cure!

Stay tuned!

Todzo

quietmorning wrote:chunkyfrog and todzo,

I used to be a workshop trainer and writer. This is sooooo possible. So completely a can do.

Those with experience teaching those who don't have it - just as everyone does here.

Just organized into workshop form.

Hi quietmorning!

What would the plan to do this look like?

Thanks!

Todzo

Todzo wrote:

quietmorning wrote:chunkyfrog and todzo,

I used to be a workshop trainer and writer. This is sooooo possible. So completely a can do.

Those with experience teaching those who don't have it - just as everyone does here.

Just organized into workshop form.

Hi quietmorning!

What would the plan to do this look like?

Thanks!

Todzo

This weekend I'll sit down and begin to draw up an action plan and see where it goes, I'll post it here once I get it together - then it can be honed here by suggestions or critical review. It may take a few days to get a good skeleton down, but boy, if it goes forward, that would be such a helpful thing for people. Thank you for stirring the pot, Todzo!

Edit: I take that back. I'm up with a nasty cold - it may be Monday instead of this weekend.

Well, I lied. I got to thinking, and the thinking process just wouldn't leave me alone. . .so this morning with a cold, I am also diagnosing myself with OCD.

I had to stop because I have to clock into work -

didn't cover: Funding
didn't finish: Medical Staff - educating and rebuilding the relationship between the Phys, staff and apnea patient.

Please feel free to add/change/delete - this isn't MINE this is OURS.

Objectives by stage: (keep to rule of 3)
Start up:

Map out projected coverage - city, national, and international.
Build core groups
Reach: Possible, Newly and Experienced diagnosed apnea Patients and their Families.
The Public – education
Medical staff – education and patient/medical staff relations and communication.

Design:

Map out projected coverage
a. Plan Country scope
-Research medical system
-laws governing public health organizations
-laws governing non-profit organizations
b. Start points – top three major cities in each state or province.
c. Physicians:
-Sleep Centers, Pulmonary Specialists, Cardiac Specialists, Neurologists, Internists, Primary Care Physicians, __________other.

Build core groups for start up support from central hub.
a. Experienced, caring and committed persons diagnosed with sleep apnea.
- Develop group literature and facilitation – 12step groups are a good facilitation model.
- Develop strategies to build group from core.
- Produce packets for easy set up and program maintenance.

Reach:
Possible, Newly and Experienced diagnosed apnea Patients and their Families.
a. Possible Apnea, pre sleep study:
– Immediate workshops to educate possible apnea patient to help them navigate choices for optimum cpap care.
– Informational packet with support contacts, concise information, and introduction to the world of cpap.
- Experienced person with sleep apnea to act as an advocate on behalf of the patient.

b. Newly diagnosed
- Continued relationship with advocate.
- Ongoing workshops
- Support groups (mixed experience)
o Phone lists
o monthly newsletter
o Informational pamphlets/literature

c. Experienced
-Advanced workshops
- Support groups (mixed experience)
o Phone lists
o Monthly newsletter
o Informational pamphlets/literature
- Opportunities to give back/support/leadership

d. Families of the Patient with Sleep Apnea
- Workshops designed specifically to help with:
Adjustment to the Patient’s disorder and care regimen
Supporting the Patient (to include and not limited to Advocacy)
Caring for an ill or disabled patient with Sleep Apnea
- Support Group
o Phone lists
o monthly newsletter
o Informational pamphlets/literature
- Resource book

The Public – Education
a. Pamphlets, literature
b. Educational Fundraisers
c. Internet Media

Possible subjects:
Recognizing sleep apnea symptoms
Short and long term effects of sleep apnea
Treatment options
Medical staff involved in your care
What is a . . .CPAP.


Educating medical staff
-To build relationship with staff to allow access to possible and new patients.
-To build whole communication between staff and patient for optimum care.
-To recognize and improve individual care of the patient with sleep apnea.

(Have to stop here and clock into work)

Bump!
This is too awesome to drop off the page.

chunkyfrog wrote:Bump!
This is too awesome to drop off the page.

Thanks chunkyfrog!

And indeed thanks quietmorning! I am working through what you have provided so far. I am also working on getting some "Non-profits for Dummies" types of books (daughter recommended) on my Kindle very soon.

As I think about it only 20% of those who have sleep disordered breathing are diagnosed. Of those less than 20% receive effective treatment in the long term. So currently only 2% of those with sleep disordered breathing are effectively treated. I believe that at least 80% of those with sleep disordered breathing can be effectively treated with appropriate changes to the administration of even current technologies. For those who manufacture and sell those technologies that is a four thousand percent growth potential!! I hope they see they should be rooting us on.

TTYL

Todzo

I would have resmed separate ca and oa. I wouldn't change machines... the s9 vpap adapt seems to be providing me great therapy... I just wish it split the event types like the other s9 machines do.

I wish I had heard the "Pop" sound of me pulling my head out of my butt about 20 years earlier and accepted that I had apnea issues when I first suspected it.

We all should watch here what kind of message we wish to communicate. Sometimes I think that some here use emotinally charged pictures to distract us from healing and good discourse.