Any oldtime posters from other forums remember: Perry

[rested gal]

Interesting, Perry. Not something I'd want to be involved in, but interesting. No, I don't think it's a scam...I just prefer doing what little I can by way of offering suggestions via the message boards like this one, TAS, and the ASAA forums.

Dunno, just seems to me that sufficiently helpful, free advice is a very good way to reach a great number of people - through message boards. Quite a few message board posters, even those of us who are not rolling in dough, have donated rather state of the art equipment to people in need.

I do think that letting people try out machines is an excellent idea. However, rather than a bricks and mortar non-profit location useful only to those who were within driving distance, I'd like to see people put their efforts into convincing some of the online stores to implement a "try it out, return it if it doesn't suit you" kind of thing. More so with masks, even, than with machines.

There are already some online stores that have machine rental programs, if a person wants to try out a machine. Can the person also get useful advice about how a trial machine is treating him/her? Let's hope so...either in consultation with their doctor or through message boards -- directly or via PM/email contact with people willing to help in their spare time. Hopefully the "helpers" are knowledgeable. But, heck, that's what we have to hope for when consulting doctors and DME's too, isn't it?

While on the trail of "hoping", I hope you'll decide to contribute on this board whenever you have time and the inclination, Perry. Hope you'll get a chance to try out some of the newer autopaps and share your thoughts about them! And hope you find a backer to help you put your plans into effect.

You may have already come across this link, but just in case... there are some pretty interesting discussions here for anyone who likes to read about how several autopaps work, including some of the newer ones:

Links to -SWS discussions

[allen]

Perry,

I find your reply to questions and salutations to be condescending and overblown with self-importance. I value this site not because there's a know-it-all "wizard" in place, but because it is populated by lots of wizards who are all muddling through the process together.

There are professional, ethical, and/or courteous procedures and protocols for most every endeavor anyone undertakes. In this case, I strongly believe that the proper procedure would have been for you to contact the operator/administrator of this site, Johnny Goodman, before posting your proposal. This site is a part of a business.


I don't question your proposal as being a "scam." I do question your entering this site, going on and on about your qualifications, and soliciting folks to PM you about something that could possibly be in conflict with forum policies--without having so much as contacted or asked permission from the forum administrator. I find that disrespectful and, were this a different kind of forum, potentially usurping.

Accordingly, as a member of this forum, my response to your suggestion is a definite, "Not interested."

I'm enjoying the folks here, I'm benefitting from their information, and I hope to continue to do so without "professional" advice at every turn.

Allen

[Guest]

Perry....welcome, welcome
Missed your postings. Thought we had lost you.
I'm one of the very few Devilbiss autopap users on this forum. I still have print outs from your posts on "that other forum" and some from MileHigh Airman. Good to have you back.

[wading thru the muck!]

Perry,

Your assertion that there is a need for a REAL Apnea Patient advocacy organization is spot on! This forum is the perfect venue to suggest such a proposal. Every other OSA related organization that I have encountered is operating on an agenda that holds priorities other than what is best for end user apnea patients. The operators of this forum realize that supporting a forum that allows ALL information beneficial to apnea patients to be exchanged will result in their business being the recipient of immense good will.

That being said, be prepared for a few nay-sayers... it comes with the territory here. It sounds as though you are no stranger to the controversies found on this type of forum.

WELCOME! I'm glad you are here.

[Nay Sayer]

Nay

[Morpheus]

I've loved reading Perry, missed him, lo, these last two years, and it's very welcome to hear his voice again - and, given his many health burdens, it's great to know he's still alive. Hope, Perry, you're doing well physically and am looking forward to hearing your recent insights.

[StillAnotherGuest]

I am not a medical professional.

Well if you're not, you can't set up a CPAP Shoppe, in your garage or otherwise, because if the

One thing I would like to do is to have a place, other than my house (which I have done), where people could come and try out the different AutoPAP’s, and have help with the many other issues.

You can't do that without a Respiratory Care Practitioner license. Without that, you can't practice Respiratory Care in my state

"Respiratory care" means health care under the direction of a physician and in accordance with written protocols developed by said physician, employed in the therapy,management, rehabilitation, diagnostic evaluation and care of patients with deficiencies and abnormalities that affect the cardiopulmonary system and associated aspects of other system functions and that includes the following: (1) The therapeutic and diagnostic use of medical gases, administering apparatus, humidification and aerosols, administration of drugs and medications to the cardiorespiratory systems,ventilatory assistance and ventilatory control, postural drainage, chest physiotherapy and breathing exercises, respiratory rehabilitation, cardiopulmonary resuscitation and maintenance of natural airways as well as the insertion and maintenance of artificial airways... The practice of respiratory therapy is not limited to the hospital setting

And for that matter, your state as well

Wisconsin RCP Regulations

SAG

[ozij]

I have reviewed some of the postings here and see that much of my information is still not readily known.

Can you please provide us with a link to your paper on APAPs

Dunno, just seems to me that sufficiently helpful, free advice is a very good way to reach a great number of people - through message boards.

<snip>While on the trail of "hoping", I hope you'll decide to contribute on this board whenever you have time and the inclination, Perry. Hope you'll get a chance to try out some of the newer autopaps and share your thoughts about them! And hope you find a backer to help you put your plans into effect.

The real power to help is in the hands of those who get out and do it without a grand plan. Rested Gal is always helping newbies. She recently PM'd me a long review of our CPAP and APAP Compare charts with a ton of suggestions. We put every single one of them in place and now look at this free tool everyone can use:

https://www.cpap.com/cpap-compare-chart/CPAP

Derek decided that Encore Pro didn't cut it, so he created something that did. After he put forward an effort that produced results, we stepped in a supported his effort by hosting and promoting MyEncore.

It sounds like you have done the same with your APAP write up paper. I'll be getting shoulder surgery soon and will be in bed for a few days. I'd love to read your APAP write up. My email is johnny@cpap.com.

As those around here know, that email box and my cpaptalk pm box is always open to suggestions. I also always welcome help in any form people are willing to offer.

Great people on this forum, and a great host.

All of us would welcome your updated info, Perry.

While I would like to help on a lot of issues – the fact is that I probably will not have time for that.

I will have to become active again and rebuild my network of people and make contacts again as some have moved on – and that will take time. Keep in mind that I have other obligations as well.

And apparently Perry will become active again if and when he is properly funded.

Any one who wants to help Perry get his plan running can PM him.

Meanwhile, help will be given by regular members to other regular - and new members, publicly - when they find the time.

O.

[rested gal]

StillAnotherGuest, are you saying that a person who is clearly not representing himself as a medical professional cannot say things like this:

"Hey, I've got several types of CPAP machines. Anyone who'd like to come over and see the machines is welcome. You can even try them out, if you want to. I'm not a doctor or a health care professional. There's no charge."

"If you're having trouble with your CPAP treatment, I'll be glad to tell you what's worked for me and for other people I've talked to or read about. It's up to you whether you want to try any of it or not. I'm not a doctor or a health care professional. There's no charge."

If he's not selling machines or selling his advice, how would that be setting up a CPAP shop?

Of course, it might become problematic if that person were receiving reimbursement or a salary from a non-profit organization which was set up to help CPAP users.

[wading thru the muck!]

StillAnotherGuest,

How the statute you reference would apply in this situation would be up for interpretation. The question would be "is this administering therapy." I would point to the fashionable "Oxygen Bars." Would not a venue where people pay to put a mask on their face that administers oxygen rich air be "therapy"? Apparently not... or are the Oxygen Bartenders also Respiratory Therapists?

Certainly there is a line that is not to be crossed, but putting you hands on a 'pap machine and trying it out for a few minutes seems to be on the "good" side of that line.

[StillAnotherGuest]

The interpretation of the licensure laws is left up to the Boards of the Department of Health, so I can't really speak for them. These forums are one thing, actively practicing is another issue altogether. Even simple advice may be included in the above proposed format, for instance in this state regulation

(4) (A) "Practice of respiratory care" means, under the supervision, control and responsibility of a licensed physician, the therapy, management, education and instruction, rehabilitation, diagnostic testing evaluation, and care of patients with deficiencies and abnormalities that affect the cardiorespiratory system and associated aspects of other system functions. "Practice of respiratory care" also means, under the supervision, control and responsibility of a licensed physician, the performance of cardiorespiratory research, cardiorespiratory health promotion and disease prevention, and community wellness and education programs.

This is from T.C.A. 63-27.
SAG

[wading thru the muck!]

The interpretation of the licensure laws is left up to the Boards of the Department of Health, so I can't really speak for them. These forums are one thing, actively practicing is another issue altogether. Even simple advice may be included in the above proposed format, for instance in this state regulation

(4) (A) "Practice of respiratory care" means, under the supervision, control and responsibility of a licensed physician, the therapy, management, education and instruction, rehabilitation, diagnostic testing evaluation, and care of patients with deficiencies and abnormalities that affect the cardiorespiratory system and associated aspects of other system functions. "Practice of respiratory care" also means, under the supervision, control and responsibility of a licensed physician, the performance of cardiorespiratory research, cardiorespiratory health promotion and disease prevention, and community wellness and education programs.

This is from T.C.A. 63-27.
SAG

SAG,

Your suggested interpretation of this statute is absurd. You need to realise that these statues are written for the purpose of policing practitioners that hold state licensure. The scope of practice listed in the statute is meant to include all possible activities for which the practitioner is responsible to carry out. If a certain activity is not listed, it would not fall under the enforcement of the statute. Just because an activity is stated does not mean that participation in that activity is exclusionary of all not holding the license.

[StillAnotherGuest]

The scope of practice listed in the statute is meant to include all possible activities for which the practitioner is responsible to carry out. If a certain activity is not listed, it would not fall under the enforcement of the statute. Just because an activity is stated does not mean that participation in that activity is exclusionary of all not holding the license.

No, I don't believe so.

The state statutes vary only slightly, they all come from the same template.

Here's a line from one of the state statutes that addresses that point specifically:

Sec. 20-162q. License required. Use of title. Exempt activities. (a) No person shall engage in the practice of respiratory care, as defined in section 20-162n, unless he is licensed under section 20-162o.

If there is any question regarding your particular state's statutes, I would recommend that you call that particular state's Department of Health, but I have little doubt that the activities that are being suggested above can be done legally.
SAG

[wading thru the muck!]

If there is any question regarding your particular state's statutes, I would recommend that you call that particular state's Department of Health, but I have little doubt that the activities that are being suggested above can be done legally.
SAG

SAG,

You and I are in the same state. I am VERY familiar with abiding by state licensure regulations. I'm glad to hear that you feel the activities described can be done legally. The opportunity for Apnea Patients to get the assistance that Perry is talking about is greatly lacking.

[Perry]

Thanks for all the responses.

To answer some of the concerns and to clarify (or at least attempt to clarify):

First, I will be participating in your forum and helping out people. The limitation is that I probably cannot spend several hours per day reading all the threads and responding to the ones where I thought I could help (I used to average 2 – 3 hours per day working with forums and emails). I have other things that I need to do with my time.

However, I see a much larger need than just the forums out there. My understanding is that internet sales of PAP equipment is currently somewhere around 5% of the market within the US. Perhaps a few more percentage of people makes it to a forum somewhere for help.

At the same time many people who are put on PAP treatment give up and the machines end up in their closet after a while. There are several reasons for this – but based on my earlier work it seems that many of those people would have continued with PAP if they could have gotten some appropriate help with their equipment.

So how do we help the other 90%+ of OSA patients? How do those struggling to get information on how their machines are, or are not, working find out. How do these people transmit their needs to the Manufacturers? This was part of the basis for the concept of a Patient Advocate & Non-Profit support organization.

What if every PAP machine sold in the US came with a small pamphlet describing common issues and where to get help (other than their local DME). A pamphlet sponsored by “cpap.com”, or any of the other internet suppliers will not be distributed by any other DME or even by the various Mfr’s. One sponsored by an independent patient advocate group should be able to do that (and I helped set up a similar pamphlet years ago with a national canoeing organization that some Mfr’s distributed with all their canoes).

In the end, sending people to the internet – and ultimately to the various forums out there (including this one) will not only greatly increase the number of people helped (why can’t we help 50% , 75%, or more instead of less than 10%) but should also increase the market share of the internet DME’s for their replacement equipment as people learn that they have options (and often better options than the local DME).

The fact that the patient advocate group could also provide other resources that are not readily available today would also expand the reach.

I will also note that one of the key features of a truly independent patient advocate group would be that they would not sell equipment (to prevent a conflict of interest).


Rested Gal: I like the idea of loner AutoPAPs for people to try.

SAG: Concerning the concern about my having “crossed” the line on what I did here in my house with a few people. Turns out that you can help friends try equipment without having a Respiratory Therapist License as long as you don’t do certain things like set machines for pressures higher than their prescription and accept payment (and a few other things as well: at least in Wisconsin). I know this because I checked with several of my friends on what I was doing… who were licensed Respiratory Therapist. However, you are correct in that any organization that set up a facility for people to come in and try equipment would need to have a Respiratory Therapist, or possibly a Nurse. Several years ago I had several volunteers for such positions if I ever got funding set up.

I am aware that some of you may consider me a dreamer – but things get built or done by dreamers. Many of you dream of just helping people directly – and selfishly put in hours on these forums. Great things have happened – and greater things will yet happen because of those efforts. I once was in the same place – but, my dreams are just bigger now – I want to help out a lot more than just those who by themselves find there way to a forum or other referral. I also want to affect machine design so that we get features designed into the new machines that we want. I have already had limited success with that in the past – so I know it can be done.

Concerning how to set up a non-profit to do the kinds of things I talk about and others have suggested… (and I am open to all suggestions on what such an organization could do). There are two approaches: 1) you can incorporate a non-profit and start to raise funds and do things when you have the money to do them. 2) you can put in place sufficient monies so that you are in a position to do some things and maintain doing them as soon as you incorporate.

My personal research into the non-profit world is that there are far to many who go the first route – and never get enough money to do anything meaningful (Quite bluntly, they fail). Of the ones who “seem” to succeed with this path – what often happens is that they get sponsored by interested parties to the issue – and then the organization is either biased or ineffective (is that success?). The groups that followed the second path tend to be more successful and remain truer to their initial goals. Thus, I am taking the approach of working to put the base funding in place – and then incorporate. I intend to succeed.

Is this a grand plan – yes. Is it doable – yes. Will it take time – yes. Will it be easy – probably not. But, nothing really worth achieving in life is easy. Actually, in many ways it is much like starting a business.

Thus, I will limit my time on the forums so I can spend my time working to establish that base funding – so I can move on to helping more people – a lot more people, and drive more people to the forums for the help that they need. Once the funding is in place – once I am not working all the hours I work - I think you will find that I can spend many hours a day on the forums (like I used to during a period of unemployment many years ago). Unless someone with a big pot of money comes along and is willing to freely give it away – that is the only way that I can see to get where I want to get with the patient advocate organization.

As mentioned in my initial proposal – I would appreciate any who would like to help with that (and am open to ideas on how to do it as well). Also, anyone else who would like to go this route is also welcome to join (and who knows – someone may be able to pull it off faster than I). Ultimately, such a non-profit would need to have a board of directors, and other staff as it got larger. I’d much rather be helping people with OSA than sitting in my cube and keeping track of the condition of heat exchangers in a plant and debating how corporate directives and mergers will affect the plant.

Concerning my APAP paper. I will email a copy to Johnny for his review and discuss with him the best way to make it available.

As far as the rest: I’d much rather spend my time on this forum reviewing other threads of interest and posting to help people instead of spending a lot of time debating my plans. Valid criticism and ideas are always welcome.


Peace.

Perry