OPPORTUNITY JUST KNOCKED -or- WHAT AN INVITATION!!!

[Offerocker]

Yessir, yessir, yessir, and ma'ams

Background: my husband has PD, and I try to attend support group meetings. The speaker at the next meeting (6/14) is (I QUOTE): a "Board certified in Sleep Medicine, Pulmonary and Critical Care", and an Associate Professor of Medicine at the Milton S. Hershey Medical Center. He is the Director of The Capitol Regional SDC, the FIRST of only two accredited sleep centers in the Harrisburg area."

I cannot tell you how much I am looking forward to listening to this man.

I am looking forward to slowly judging him based on what he says and how he answers my MANY questions, which I will ask as innocently as a blonde can .

I am NOT looking forward to finding fault with this man, what he does, how he does it, etc. I hope I find NO FAULT.

I am looking forward to educating him (and the group members) of our problems, as posted on this site. I don't have enough paper, nor the donkey to list and haul them to the meeting.

I cannot tell you how much I am looking forward to meeting this UNKNOWN person, and finding out how HIS lab "works" - and how effectively it "works" with the patient once he/she is out the door. I am going to ask him to address the part the DME plays in the treatment, and his involvement, if any.

Ought to be interesting. Now, I gotta 'dumb down', which shouldn't be too hard to do, ha ha. You know, "dumb like a fox".
You all will be with me in spirit, as I will try to express our plights, and our "Bill of Rights".
Assuming the meeting isn't called due to rain (...on the subject matter!!)

[C Reichert in Langdon]

There are many fine sleep doctors helping us apnea sufferers. My sleep doctor is excellent and a good human being, charitable and a loving family man. Odds are the speaker you will hear is of a similar mold.

[Offerocker]

There are many fine sleep doctors helping us apnea sufferers. My sleep doctor is excellent and a good human being, charitable and a loving family man. Odds are the speaker you will hear is of a similar mold.

You don't know how much I want that to be TRUE, and I will give him the benefit of any doubts until I sense differently. I didn't mean to sound 'challenging', although I am ready to ask many questions IF he does not offer that information. I DO understand that he'll just be there to 'inform' us of the other possibilities for tiredness. Maybe, if there are enough sufferers, I could ask the person who schedules 'speakers' to let me have time at one of the meetings to provide a "patient's view" on the subject of sleep Apnea". I'm certainly no expert, but my personal, varied experiences are better than none.

I am very happy that you were so fortunate to have the right person initially!
I do understand that those who are willing to give of their time are most likely of the mold to do that during office visits also.

[chdurie2]

I don't understand why you feel the need to "dumb down" or "ask innocently as only a blonde can." I think that makes you look stupid--I'm not attacking--only suggesting that you not put yourself down in order to make your points. No, doctors tend not to respond well to "know-it-all" patients, but I think you can make points by just being an educated consumer-patient without appearing fanatical. I'm suggesting a dialog rather than the campaign I sense coming from you. And if you have a campaign in mind, it doesn't make its best point coming from a "dummie."

"Dumbing down" sounds like you plan to entrap this guy--I'm not sure you gain anything that way, if that's what you have in mind. Or he may well talk to you as he would talk to a dummy because that's how you sound. You risk his spending his energy belaboring the most basic of points because he thinks you don't know anything.

Plus, since you live in an area where it seems that sleep knowledge is not at its most sophisticated, you may also learn something from this guy. So don't close off the possibility that he may have something to give an educated patient, stuff you may not get if you play dumb.

You don't know what this guy is like. Don't assume he's an arrogant ####### just because he's an "expert." Don't cheat yourself from learning and/or the possibility of a good dialog. He may respect an educated patient.

Caroline

[Guest]

Don't assume he's an arrogant _______ just because he's an "expert."

Caroline, you make some great points. Your use of obscenity is offensive and completely unnecessary to make those points.

[chdurie2]

sorry if the word offended you. i hear and see it uncensored all the time in tv and in print, so i didn't think it was a big deal. (sometimes it is censored.)

caroline

[Offerocker]

chdurie2:
Thank you for your sensible advise. The a_ word did not offend me at all; I found it quite descriptive, and sometimes one word suits better than a paragraph of descrition.

I didn't REALLY mean to "play dumb blonde" in the typical sense. It was my way of saying I think "the best way not to intimidate of put on the offensive " this person is not to immediately spew forth my bad experiences, but to slowly find out from where he's coming, then head in that direction and slowly pull him to the direction I want him to address. It's hard to speculate now, not knowing this person or what type of presentation he will give - maybe it will be very general, as the word 'apnea' was not mentioned in the flyer. I can only assume that is the subject, since he's associated with a sleep lab. I will represent myself as educated, experienced, and attempt to be responded to in same manner. I believe that when I wrote the original post, I was 'hyped' due to so many mis-dealings to date, and saw the opportunity to 'bite back'...at an unknown, which would be unfair to all of us.
By asking educated questions, that hopefully will enable/force him to provide appropriate responses to the members at the meeting.
I'll ask where we can get more information, and mention that cpaptalk.com has been most helpful to me.

Also, after the meeting, I want to speak with the current president of the Parkinson's support group to find out how many people DO have, or suspect they have this health problem. If enough people are interested, I would like to factually let them know of my experience (generally), and that it may not be the 'norm', but only to let them know what I wish I'd known BEFORE going to a lab or local DME, etc.

I guess my bottom line is that I want this person to provide accurate information as I know it. Who knows, next time I "need" a sleep study, I will go to his lab?!

I am NOT looking forward to finding fault with this man, what he does, how he does it, etc. I hope I find NO FAULT

.

I appreciate your comments and advice. I don't like to 'play games', but I see now that's how my entry came across. I guess I was just too used to HAVING to "Play games"...I'm not very good at it anyway, and one never wins against an asshole - there, I've said it too. Hey, they are out there, why not identify them?

Kathleen

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): DME

[Guest]

Ladies(?),

Obscenity is not permitted on this forum.

[tomjax]

Doncha just love it when a GUEST comes in trolling and ACTS offended by profanity.

I thnk we have located the #########.

I just hope the person gong to the lecture does not come across to him/her the way s/he does in the attitude expressed in the opening.

please post back the question(s) yae are asking.

Guest- GAFL!!!

[Offerocker]

I just hope the person gong to the lecture does not come across to him/her the way s/he does in the attitude expressed in the opening.

please post back the question(s) yae are asking.

Guest- GAFL!!!

Tomjax, Rest assured; that's why I re-posted.
I'm open to suggestions for questions.
I haven't outlined them yet; will let you know by Wednesday. Of course, some of those questions may not need to be asked, and others will come to mind as the speaker 'speaks'.

[k_teague]

Kathleen,

I understand and agree that you want to be diplomatic in any questions you may have an opportunity to pose before the speaker. I may be old school, but to me there are certain civil courtesies one gives to an invited guest and to hosts, as well as fellow guests, and to do otherwise could dimish your likability thus with some, your credibility regarding the real issues. Since unable to predict how much you'll even get to say and what their responses will be, maybe just identify a couple main core topics to address if permitted. I seriously doubt this event will get very in depth since it sounds it's more of an awareness type program, and not the arena to debate details of cpap treatment.

Initially, I would engage him as an ally, and solicit his helpful insider advice with questions such as:

"Due to technological advancements in equipment, do you forsee ongoing sleep apnea monitoring going the way of diabetes monitoring and blood pressure monitoring, being largely the patient's responsibility under a doctor's oversight?"

"Could those in your profession help patients by using your influence to affect the disproportionate equipment costs at many DME providers compared to online vendors? For instance, a pair of nasal pillows online this week is $18.95, same item at a DME provider was $65."

To the listening crowd, they have now been subtly informed that some people monitor their own care, and DME's charge more. Same end result, no confrontation.
Kathy

[Offerocker]

Kathleen,

I understand and agree that you want to be diplomatic in any questions you may have an opportunity to pose before the speaker. ... Since unable to predict how much you'll even get to say and what their responses will be, maybe just identify a couple main core topics to address if permitted. I seriously doubt this event will get very in depth since it sounds it's more of an awareness type program, and not the arena to debate details of cpap treatment.

Initially, I would engage him as an ally, and solicit his helpful insider advice with questions such as:

"Due to technological advancements in equipment, do you forsee ongoing sleep apnea monitoring going the way of diabetes monitoring and blood pressure monitoring, being largely the patient's responsibility under a doctor's oversight?"

Kathly, I see that you believe in the power of SUGGESTION! Very good point!

"Could those in your profession help patients by using your influence to affect the disproportionate equipment costs at many DME providers compared to online vendors? For instance, a pair of nasal pillows online this week is $18.95, same item at a DME provider was $65."

I see this as education to all parties; he may not even be aware ot these discrepancies.

To the listening crowd, they have now been subtly informed that some people monitor their own care, and DME's charge more. Same end result, no confrontation.

Excellent points, Kathy; Thank you for that intelligent, yet slick approach.
I was going to ask him what his methods of treatment are, and his usual treatment "plan" for the patient.

Your questions will cause him to think further, outside the immediate realm or normalcy, and possibly give him andf the audience valuable points to ponder. Planting the seed is always a good idea.

Thank you for you excellent suggestions! I'll run with them, as they serve dual purposes, in addition to making me "look good", ha ha.

K_Teague: would you please make a profile?
I appreciate your comments!

[kteague]

Kathleen -
I signed in above as guest k_teague because I was out of town and couldn't remember my login info. (You know, it's that short term memory thing so common to the sleep deprived.) I am in transition with equipment, hope to add some more info to my profile in the next week or so. Hope the seminar you're attending is a blessing to you and the other attendees, and that you will be a blessing as well.
Kathy