[daveman]

...providing you could control NEs of course.

The only way I could ever control those miserable, life-destroying NE's was by getting older!!

.......

LOL I know what you mean!!

[Animus]

I just had my first day of filming with the TLC crew. It went well. They mainly got some shots of my walking around Chinatown (San Francisco) And they had a quick interview with me and one of my doctors. Tomorrow is the main interview segment. i think it'll be more interesting, hopefully.

[lauracostis]

In the same vein, another norepinephrine inhibitor is:

http://en.wikipedia.org/wiki/Phenoxybenzamine

Has anybody tried that?
It is doubly interesting in that it blocks sperm production while retaining the ability to O.

Funny, in class this morning we were learning about this drug during a lecture on hypertension.  Although, the professor was not siting it as a potential cure for pois, but for hypertension induced by excessive catecholamines release. even more specifically for catecholamine release because of a tumor in the adrenal gland called a pheochromocytoma.  He did mention that there are undesirable sexual side effects, "now I now what they are".
If you have hypertension, this may be something to try.  if you do not have hypertension it will probably cause hypotension and make you feel like crap, but it would also test to see if semen going through the urethra is causing problems.  IF you were under the impression that noradrenaline is causing the problem, i do not think it will help because it only blocks adrenergic cell receptors, noradrenaline would still be circulating around in your system, it does not stop its release.

[CertainlyPOIS]

I just had my first day of filming with the TLC crew. It went well. They mainly got some shots of my walking around Chinatown (San Francisco) And they had a quick interview with me and one of my doctors. Tomorrow is the main interview segment. i think it'll be more interesting, hopefully.

Very Nice.
you should exagerate some symptoms to make it more interesting  [^]

[GoingCrazy]

I just had my first day of filming with the TLC crew. It went well. They mainly got some shots of my walking around Chinatown (San Francisco) And they had a quick interview with me and one of my doctors. Tomorrow is the main interview segment. i think it'll be more interesting, hopefully.

This is going to be great to watch on tv, I might be able to actually convince my parents that I have this "POIS" feeling because of orgasm, not because of stress at school or college.  It's been 3-4 years and they still are somewhat skeptic even though I tell them every time after an "O" what I feel.

[demografx]

I just had my first day of filming with the TLC crew. It went well. They mainly got some shots of my walking around Chinatown (San Francisco) And they had a quick interview with me and one of my doctors. Tomorrow is the main interview segment. i think it'll be more interesting, hopefully.

Congratulations on your decision to promote our cause. Best wishes!

[daveman]

I just had my first day of filming with the TLC crew. It went well. They mainly got some shots of my walking around Chinatown (San Francisco) And they had a quick interview with me and one of my doctors. Tomorrow is the main interview segment. i think it'll be more interesting, hopefully.

Wonderful!

BTW, was the doctor a friendly or un-friendly doctor? What was the objective of the interview?

I guess it would have to be a friendly doc. It would be hard to do an interview with an un-friendly one and maintain the real attitude.

[demografx]

From our friend, Stefanie, at NORD

-----Original Message-----
From:          Stefanie Putkowski <rn@rarediseases.org>
To:            demografx
Sent:          Fri, Jan 28, 2011 6:16 pm
Subject:       Re: The picture of POIS (from one of the news articles)


Hi demo,

What a great drawing to express POIS!  I'll bet for some it's even worse than that!

More importantly, I want to tell you how totally impressed I am with you and your comrades. I received an email yesterday from Lindsey Savino of The Learning Channel, advising that she will be producing an episode on POIS. :-) :-)  Congratulations!!!

demo--do you know what you've all accomplished by going public with this???  I don't want to sound like a mother hen-- but -- I am so proud of you all!!  Bravo!!! 

NORD has worked with TLC several times in the past regarding episodes about other rare disorders--they have our trust and admiration due to the totally respectful and accurate way that they portray patients with rare conditions. There is no "hollywood" in there--just serious portrayal, story-telling, and explaining.

FYI, their episodes are often extremely helpful to people. I've received phone calls from individuals stating that they watched a TLC episode last night--and they now have an idea about what their own illness might be--after years of no diagnosis.

Lindsey advised that she obtained my contact information, "from a man named demo." :-) 

They want to now do other episodes on rare sexual disorders, and she's asked for some input--which I will gladly provide. POIS is only one of these disorders--but it's one whose time has come (pun not intended!).

I'll be responding to Lindsey right after sending this email to you. 

Great going--all of you!!  Please keep me posted on your progress with TLC..


Sincerely,
 
Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org
 
Join our online community
http://nord.clinicahealth.com/
 
NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions

 
--------------------------------------------------------------------------------------------



On Fri, Jan 28, 2011 at 5:29 PM, <demografx> wrote:

[Green]

I just had my first day of filming with the TLC crew. It went well. They mainly got some shots of my walking around Chinatown (San Francisco) And they had a quick interview with me and one of my doctors. Tomorrow is the main interview segment. i think it'll be more interesting, hopefully.

Very Nice.
you should exagerate some symptoms to make it more interesting  [^]

POIS is already so "extreme" in it's standard form, that there is no need for any exaggeration

[lauracostis]

I just had my first day of filming with the TLC crew. It went well. They mainly got some shots of my walking around Chinatown (San Francisco) And they had a quick interview with me and one of my doctors. Tomorrow is the main interview segment. i think it'll be more interesting, hopefully.

Very Nice.
you should exagerate some symptoms to make it more interesting  [^]

POIS is already so "extreme" in it's standard form, that there is no need for any exaggeration

I do not think most people would believe me if I under exaggerated my pois symptoms

[POISon]

@Demografx

Wow that letter is extremely encouraging! When I found this site I think it was about 8 months ago,I read every single page and almost every post.I never thought things would progress so rapidly as they did in the last 6 months.I still recall the post where Nord  recommended we start a fundraiser through a barbecue and invite family and friends for donations.I'm very eager to see TLC's Pois episode,because I have a feeling  many doors are going to be opened concerning funding after that airs.I really respect and admire you for taking the responsibility and initiative in getting a hold of Dr.Waldinger, Nord,and other organizations to see what you could you could do to help raise awareness and funds for research.

@ Animus
 Awesome man!You got a lot more guts than I do.I don't think I'd have the balls to be interviewed on T.V for anything let alone discussing my debilitating symptoms after an orgasm.Thanks for stepping up to the plate and doing such a brave deed.This gives an enormous boost to public awareness of POIS!.

[demografx]

POISon, thank YOU for a most encouraging post!! [] []

[demografx]

NORD Charity Rating by CharityNavigator
http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=6741

[CertainlyPOIS]

I just had my first day of filming with the TLC crew. It went well. They mainly got some shots of my walking around Chinatown (San Francisco) And they had a quick interview with me and one of my doctors. Tomorrow is the main interview segment. i think it'll be more interesting, hopefully.

Very Nice.
you should exagerate some symptoms to make it more interesting  [^]

POIS is already so "extreme" in it's standard form, that there is no need for any exaggeration

I do not think most people would believe me if I under exaggerated my pois symptoms

I just have this feeling that people wont understand the effect of pois even if after watching the show.
'nothing against the show just the people watching it".

[Limejuice]

People without POIS will never truely understand how it feels to have POIS, and publicity like TLC and news articles will increase our chances of finding help in the medical community.

[Animus]

I hope the show does some good. Today was the second day of filming. We did a 4 hour interview this morning which was really in-depth and very honest. They asked me all about having POIS, how it affected my life, and did a great job framing the story and asking questions. Whatever the outcome is, I was totally honest and open with them about my experiences. I probably could have said a lot of things better. And my story is kind of extreme, so I hope it still represents the illness well. But at least it's something out there...
The production crew is terrific, and they've been filming me in many common situations to make the story look more familiar and get people to see me as just another person who they could relate to. They've been doing a great job at that.
Tomorrow is the last day of filming, and I'm going to try to include some remarks about dr.Waldinger's recent paper because I haven't mentioned it yet.
Finally, they are going to take all this footage and edit it and turn it into a half-hour show.

Thank you guys so much for your encouragement- it means a lot.

[lauracostis]

yeah, you got some balls animus.  if know one else had volunteered I was thinking about doing it just so the opportunity of a lifetime did not pass the members of this forum by. The only thing is that they probably would have wanted to follow me around while I was doing hospital rotations.  And then later after the show came out my patients would say "aren't you that guy who has pois, I thought they said on the show that while you were in pois you took an IQ test and you were only as smart as a spider money" then I would have to explain that there would only be a small chance that I would kill them with the wrong medication or a lethal dose.

[John21 (OP)]

Animus, this is good work you are doing. I wouldn't worry about presenting yourself perfectly, just hit on the main points and be honest. Did they give you a general idea when it will be aired?

[Guthrie]

The only thing is that they probably would have wanted to follow me around while I was doing hospital rotations.  And then later after the show came out my patients would say "aren't you that guy who has pois, I thought they said on the show that while you were in pois you took an IQ test and you were only as smart as a spider money" then I would have to explain that there would only be a small chance that I would kill them with the wrong medication or a lethal dose.

This is one of the single most hilarious statements posted on this forum to date!

[EDS]

I hope the show does some good. Today was the second day of filming. We did a 4 hour interview this morning which was really in-depth and very honest. They asked me all about having POIS, how it affected my life, and did a great job framing the story and asking questions. Whatever the outcome is, I was totally honest and open with them about my experiences. I probably could have said a lot of things better. And my story is kind of extreme, so I hope it still represents the illness well. But at least it's something out there...
The production crew is terrific, and they've been filming me in many common situations to make the story look more familiar and get people to see me as just another person who they could relate to. They've been doing a great job at that.
Tomorrow is the last day of filming, and I'm going to try to include some remarks about dr.Waldinger's recent paper because I haven't mentioned it yet.
Finally, they are going to take all this footage and edit it and turn it into a half-hour show.

Thank you guys so much for your encouragement- it means a lot.

Great - Animus!! We really appreciate you stepping forward to help get the word out about POIS!!!!