Author Topic: Free Flow Discussion about POIS  (Read 577158 times)

demografx

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Re: This may seem like a familiar place.
« Reply #630 on: January 25, 2013, 10:00:20 PM »
To all contributors thus far: thank you for your patience!

And thank you again for your role in helping to finally make POIS medically understood.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #631 on: January 25, 2013, 11:15:17 PM »
To all pledgers.

This is the time for your pledge to really pay off.

Please consider making your pledge real. Now.

Thank you.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #632 on: January 27, 2013, 06:46:18 PM »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

  • Administrator
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  • Posts: 5208
  • All of us working together to defeat POIS!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #634 on: January 28, 2013, 02:03:47 AM »

Thanks for today's confidential  Donation$!

Hello, Everyone,

I just feel compelled to say that I AM AMAZED!!!!

The amount of money you've raised -- especially considering the anonymity factor -- is absolutely astonishing!

What a terrific and inspiring group of men you are -- I say that from the bottom of my heart.

You men are going to do it!!!

(And you are keeping NORD's Accounting Department on its toes. Without question -- you are the most active research fund there.)

Here's to conquering this misererable demon! POIS has found its antidote in all of you who have kept the faith and refused to give in to those thoughts that we all have in many situations  -- those doubts, those worries, the "why bother?" thoughts.

And your moderators -- with their nerves of steel -- are absolute blessings. :-)  They've not been afraid to face possible failure (which will not happen!) or to cope with doubting forum members.  They have  both stood in their light -- all the way through.

What a fantastic group you all make!   BE PROUD!

Stef


« Last Edit: January 29, 2013, 08:59:16 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #635 on: January 28, 2013, 04:05:00 PM »


Thank you for your confidential $25 Donation$ today!
« Last Edit: January 28, 2013, 08:41:59 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #636 on: January 28, 2013, 10:04:02 PM »



Cure POI$!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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  • All of us working together to defeat POIS!
Re: This may seem like a familiar place.
« Reply #637 on: January 28, 2013, 10:39:01 PM »
« Last Edit: January 29, 2013, 04:16:08 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5208
  • All of us working together to defeat POIS!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #639 on: January 29, 2013, 01:54:47 AM »
Please visit our NORD Funding
Countdown Timer

http://tinyurl.com/bkzdoch

As Daveman says, 2 months can FLY by.

60 52 51 days to go!
« Last Edit: January 29, 2013, 01:57:15 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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  • All of us working together to defeat POIS!
Re: This may seem like a familiar place.
« Reply #640 on: January 29, 2013, 02:25:52 AM »
"We cannot afford to wait another year!" --  writes 'Observer', our POIS Video/TV Star!
See TV Videos with Forum Members Observer, Hoping, and Animus:
http://www.youtube.com/user/POISchannel

« Last Edit: January 29, 2013, 05:28:27 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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  • All of us working together to defeat POIS!
Re: This may seem like a familiar place.
« Reply #641 on: January 29, 2013, 04:24:30 PM »

Hi everyone,

[Written about a year ago, but still valid - demo]

I'll be away for the rest of this month with little/no internet access - back in March. Unfortunately, as I've said, this means I won't be able to take on the reddit fundraiser, writing more letters to companies and other things on my to-do list, at least not until I get back.

Lately, I've had a lot of motivation to tackle POIS  I haven't always had this. Sometimes in the past I've been guilty of just wanting to get on with my life and enjoy things when I haven't had POIS symptoms. When I have been in POIS,  well  the motivation hasn't always been there either - that's a symptom of POIS!

There are people on this forum doing a lot of work to further our fight against POIS including several who have put in much more work than me over the years. I wondered a while back if it might be helpful to someone if I posted a message about why I've been so motivated lately. I started drafting a message...

Motivation comes and goes. Right now, I'm seriously motivated to do something about POIS. I haven't always been. I joined this forum in 2007 but I've had long periods of silence along the way. I understand how its possible to not visit the forum for months or read it without posting much.  I thought it might help to give some insights as to why I'm so fired up right now.

1. Dating
2. Being nearly 40
3. A chance to achieve
4. We're getting really close

1. I've been trying to get a relationship off the ground. I signed up to an internet dating site a while ago. Let me tell you there are some fantastic ladies out there. I've been on several dates and met one person in particular recently  I liked a lot. POIS has held me back when it comes to trying to take things beyond friendship. If, like me you've been avoiding seeking a relationship for a long time because of POIS, I can tell you that going on some dates has given me serious motivation to sort POIS out. Why? Because it properly reminds me and makes me realise what I've been missing out on - for years and years.  I'm still unsure whether its fair on the women for me to be on a dating site as a POIS sufferer but of course if I end up getting close to someone on there I'll explain things to them. Actually, a doctor I saw encouraged me to go ahead and start dating again and I was reassured that some people on here manage relationships despite POIS. Some are even married! When my POIS was at its worst, I would agree a relationship was out of the question. I'm at a stage when I'm still unsure but I can see its getting more and more possible.

2. I'm getting pretty close to 40 years old. I'd like to settle and have a  family. It feels like I'm light-years away from that. The clock is ticking and I feel I'm running out of time. If its too much longer, its likely I'll be left trying to start a relationship with a woman who can't have kids anymore. And I'll be a pretty old dad if I manage it.  If you're a lot younger it can be hard to get motivated by this. I know, I was there. Don't be fooled, time wastes quickly when you're in POIS.


3. I grew up used to achieving, in my case academically. 15 years ago POIS turned my life upside-down in ways that you all know it can. 15 years!!! And Demo's had POIS for 30+. In my professional life I haven't achieved what I planned to. I've underachieved  since I've had POIS (although I tell myself that I've done pretty remarkably given I have it). Through these forums I've realised that I have a chance to achieve something great. A chance to to beat POIS, make a difference and improve not only my life but the lives of all POIS sufferers present and future. I want to be able to look back and feel I made an effort and helped a little in the fight against POIS. For a long while I don't think I did make much effort. I wouldn't wish POIS on anyone. It feels good to have a sense of purpose and to try to help.

4. We are closer now than we have ever been to solving POIS and that too is motivating. POIS is more widely known and accepted than it has ever been. In 2007 it was amazing to find the forum and there were some great discussions but things felt a lot more helpless than they do now. We were scrabbling around in the dark. Now we have much clearer directions to go in. At some point I'm certain we're actually going to figure this out. I've been going on about the NORD fund lately. I want to meet that March 31st [2011] deadline. Maybe Prof Waldinger will announce he's solved everything. But I think its unlikely what he finds will work for all of us given the varying success different remedies have had across our group We've got a chance to start research on POIS. With it and the few people that are already looking into POIS, we'll have a much better chance of solving POIS for everyone.

I don't know what your life is like but, based on experience I think I can safely say it would be transformed if you didn't have POIS. I'm sorry if some of this sounds patronising, that's not my intention. You may be skeptical about the NORD fund. You may be right to be. But can you afford to take that risk? Please don't waste time. Fight through this. The time to do something is now.

There's never been a better time because we finally have doctors that are sitting up and taking notice. As I said, I've had POIS for 15 years and some have had it much longer than that. I feel like a huge chunk of that time, especially the early years of POIS was wasted/taken away from me. I don't want you to  reach this stage. For most of the time Demo and others had POIS, the condition didn't even have a name, wasn't recognised by the medical community and there were no fellow sufferers around to turn to. Please don't waste your life or sit back hoping someone else will do something about it and solve your problems for you because the days of POIS being unknown have passed.

Its easy to feel helpless but you're not. Here are some things you can do:

CCconfucius drafted a letter to send to companies. I did too. They're not perfect but they're a good start. Write to companies for outside funding.

Make sure your doctor knows about POIS. He likely won't be able to help but you'll be raising awareness and paving the way to make things easier for other people in future.

At least think about other ways of fundraising and suggest them on the forum

At the risk of being repetitive and losing the message through being long-winded…

Please take a serious look at how much you can donate to the NORD fund. In terms of the potential gains, I'm going to be bold and say that very very little is as important to you right now as resolving your POIS issues. I know especially when you are young, money can be very difficult to come by and to part with. I am not wealthy - not even remotely so. I've had my fair share of financial struggles, not least because of POIS. But trust me, money goes and money comes. If you part with some, you'll have more soon and you'll get by. In a year's time, money you give away now will likely not even register because you'll have found a way to make up for it. You might even be well on your way to being POIS-free. If you solve your POIS you'll earn more, that I am sure of. POIS-free! - don't pass an opportunity to make that real.

As I said, some of these are bold statements. I hope you have read this far because its important for me to acknowledge that I know pretty much nothing about any of you so forgive me if you feel I'm making sweeping statements I'm not qualified to make. But I do know what its like to have POIS for a long time and I know we've never had better opportunities or resources to do something about it. Help yourselves and your loved ones and don't end up looking back wishing you'd done something earlier.



Then a few weeks later Mel wrote...


I just converted my initial $500 pledge into a donation to the NORD fund.

« Last Edit: January 29, 2013, 05:19:17 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: This may seem like a familiar place.
« Reply #642 on: January 29, 2013, 04:44:05 PM »


Hi Men,

You've got about three more weeks to make your fund goal in 2012.

It's time to turn your pledges into REAL DONATIONS -- there is no comparison between a pledge and a donation. Donations win out. And the ripple effect is guaranteed!

Show your trust, and especially -- show your support for those who have been donating.

WHAT ARE YOU WAITING FOR??

This is how it is for ALL rare disorders -- the research begins with you. You are no different from any other group of people who struggle with a rare disorder in that one specific respect.

Honor yourselves and each other -- and just go for it!


From Stef/nordnurse a year ago.

10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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  • All of us working together to defeat POIS!
Re: This may seem like a familiar place.
« Reply #643 on: January 30, 2013, 07:07:44 PM »
--------------------------------------------------------------------------------------------------------------
This is Daveman's recent mailer that we hope you all received:
--------------------------------------------------------------------------------------------------------------

"Most of you know but some may not! We have raised $30,000 of the minimum $33.500
required to produce a research grant for the investigation of POIS. WE are almost there!!
But so is the dead-line for this year.

We have until March 22, 2013 to reach the minimum! Just 8 weeks left to raise the last $3000.

If we don't make it by March 22nd?

Not a BIG catastrophe, only have to wait one more year. We don't lose the money, just the
opportunity in time.
One more year of wondering, guessing, going round in circles with promising theories...
that in 6 years, have NEVER done more than raise unfounded hope.

What will the research provide?

We can't really know for sure, but the BEST will be chosen. Invitations will be sent out to over
40 medical specialists, many more will apply independently.
NORD (National Organization for Rare Disorders), the grant administrators, have a highly experienced
and specialized team to evaluate the dozens and dozens of proposals. NORD has evaluated hundreds
of very rare disorders, many much more complex than ours, and have a mechanism which has had very
much success in filtering through strange and unknown disorders to islated the options that have the
best chance of resolving the issue.

If an illness has great complexities, more than ours, the direction may be directed toward closing
in on defining the illness and preparing for future stages of research. Where certain mechanisms have
shown to produce results as in POIS, thia can certainly help to more closely isolate a direction.
We don't want to proclaim any particular direction, just indicate the optioins that we are aware of.

Will we find the cure with this research?

Ultimately YES. Perhaps with just one grant, perhaps not. But we can be sure we will know
WHAT POIS IS after this first research. Just that alone is worth it's weight in gold. We don't
know what POIS is maybe it's this, maybe it's that, try this, try that, this works for some the
other works for others some things SEEM to work... for a week.

We don't know what POIS is. We just don't know. To know that, we will have put ourselves on the
right track, we will have made a change in the tail chasing. We will be standing at the doorway to a solution.

But I believe that THIS is at the very least. We will likely uncover a very likely direction to relief for all,
we will credibly expose POIS to the medical profession... VERY IMPORTANT allowing a positive attitude by treating
doctors.

We are ALMOST THERE!!!

ONLY $3,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!

Please give generously. To yourself! NOW!
"




Click here to PLEASE donate:

 Please Click H E R E
« Last Edit: February 01, 2013, 12:11:49 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5208
  • All of us working together to defeat POIS!
Re: This may seem like a familiar place.
« Reply #644 on: January 31, 2013, 01:24:06 PM »
--------------------------------------------------------------------------------------------------------------
This is Daveman's recent mailer that we hope you all received:
--------------------------------------------------------------------------------------------------------------

"Most of you know but some may not! We have raised $30,000 of the minimum $33.500
required to produce a research grant for the investigation of POIS. WE are almost there!!
But so is the dead-line for this year.

We have until March 22, 2013 to reach the minimum! Just 8 weeks left to raise the last $3000.

If we don't make it by March 22nd?

Not a BIG catastrophe, only have to wait one more year. We don't lose the money, just the
opportunity in time.
One more year of wondering, guessing, going round in circles with promising theories...
that in 6 years, have NEVER done more than raise unfounded hope.

What will the research provide?

We can't really know for sure, but the BEST will be chosen. Invitations will be sent out to over
40 medical specialists, many more will apply independently.
NORD (National Organization for Rare Disorders), the grant administrators, have a highly experienced
and specialized team to evaluate the dozens and dozens of proposals. NORD has evaluated hundereds
of very rare disorders, many much more complex than ours, and have a mechanism which has had very
much success in filteing through strange and unknown disorders to islated the options that have the
best chance of resolving the issue.

If an illness has great complexities, more than ours, the direction may be directed toward closing
in on defining the illness and preparing for future stages of research. Where certain mechanisms have
shown to produce results as in POIS, thia can certainly help to more closely isolate a direction.
We don't want to proclaim any particular direction, just indicate the optioins that we are aware of.

Will we find the cure with this research?

Ultimately YES. Perhaps with just one grant, perhaps not. But we can be sure we will know
WHAT POIS IS after this first research. Just that alone is worth it's weight in gold. We don't
know what POIS is maybe it's this, maybe it's that, try this, try that, this works for some the
other works for others some things SEEM to work... for a week.

We don't know what POIS is. We just don't know. To know that, we will have put ourselves on the
right track, we will have made a change in the tail chasing. We will be standing at the doorway to a solution.

But I believe that THIS is at the very least. We will likely uncover a very likely direction to relief for all,
we will credibly expose POIS to the medical profession... VERY IMPORTANT allowing a positive attitude by treating
doctors.

We are ALMOST THERE!!!

ONLY $3,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!

Please give generously. To yourself! NOW!
"




Click here to PLEASE donate:

 Please Click H E R E

MANY Thanks, Daveman! Our first Grant will also ATTRACT: more research, more funding, more attention from YOUR doctor -- because POIS will have been studied by world renowned medical professionals and researchers obtained with NORD's help and its impeccable credentials.
« Last Edit: January 31, 2013, 07:15:35 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business