Spartan

Hi There Jagamister..

i agree with you 100%

David Kozin is so awesome and still fighting for us.. and where would we be without him... and others who have sacrificed so much time, energy hard work and courage etc etc etc  as a means to this end.

This is great..

http://hppdonline.co...d/?fromsearch=1  

Yes - Our Goal should Be 100,000 to begin with!

Maybe we can set up the donations to go to David Kozin... thay maybe able to help with his other expenses also..

what needs to happen to "Get in the game" and to just set this up professionally, so we can present ourselves in the best light and get the outcomes we would like..

oh what happend to the web site ?

https://www.facebook.com/perceptiondisorders

Hey Jess,

ok that’s really great!

I’m also keen to step up and share also on video also...

 

But in the visual snow one they already have a team of neurologists who are willing to work and research...do we have anyone for hppd willing to do that ??

I think David Kozin would be excellent to ask about that...  there may well be people doing research.

If I remember correctly.. there are people doing clinical research trials "im trying to find the web site.. apparently the woman who is conducting it is looking for people to share there story’s for her new up and coming book..

There are also these sites i found :

http://hppdfoundation.org/

http://grants.nih.gov/grants/guide/rfa-files/RFA-NS-12-002.html

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im looking for the    www.perceptualdisorders.com   site ?

Also.. possibly Dr Henry Abriham may know of current study’s / research that is taking place...

 

Imagine if all of us made youtube videos and directed people to the page?!! Something rlly needs to be done for hppd also

ok yeah that’s such a good idea!  ok Jess.. I think we have to do our best to inform and motivate people to take action to do this.

People can remain 100% anonymous, We can achieve this by wearing wigs lol and sun glasses lol etc etc I understand it’s important to people that people may want there identity’s kept concealed. Me also..

we could always just upload them to the HPPD U Tube Channel...

I’m sure we could produce some cool shit.. and there are so many ways to promote our cause through GoFundMe. I set up another account for another "charity" so know its easy to promote on that platform.

So lets take a stand and just do this. It doesn’t matter so much what it looks like, although we just want to get the result, i.e. money / funding for treatment research/studys. Life will reward us for being Bold. Who knows.. im sure it will raise public awarness more and more, it may even get the attention of the media..

I made a post about "Go Fund Me" and Suggested raising money for HPPD about a week ago:

http://hppdonline.com/index.php?/topic/4048-starting-a-youtube-channel-for-hppdonline/

This is the first time i have seen this one on visual snow tho..

As a community we could always (and should) model something similar to this..

People who are intrested can always make small videos.. then we can put them all together... and create some cold hard cash.. for reaserch etc etc

Our target should be at least 100,000 dollars to begin with.

I will take action now and start the page -

holy fark skunk is the wost lol

Sure.. as far as im aware QEEG is availabe in australia and have sent detais of a Neuro Psychaitrist in Brisbane to your inbox Jess. Hope that helps..

thanks  you too Canabrain.. i just sent that link thru to my docter...

All the best for thursday!

Thanks!  ok exellent idea.. wow 1/3.. thats awesome and a high ratio..

It sounds good, please do let me know how it goes!

That article looks exellent.. I will send it thru to my neuroligist to make him aware.. I would like to try it also.

All the best for thursday!

thanks very much for that Cannabrain and Jay

exellent and helpful tips and adice..

No wonder i find writing and other tasks that require focus so challenging often times... etc etc etc

i will make a consistant effort to be more of an extrovert and make more friends also (just located to a new city)

I may look into Tolcapone also..

Thanks again !

basicly since then my social life is zero... and i even deactivated my face book account,,,

im curious,

i was using clonazapam for nearly 3 years.

I did a complete withdrawral nearly 6 months ago..

Since that time, i feel as though i relate to the world diffrentley and i have changed alot. It is a transition.

Can aneyone relate ?

i was inder full anesthesia in sydney... all fine

ok well thats a great outcome then   maybe it was the catylist for those future events..

 

I'm a firm believer in the mantra "everything happens for a reason"

 

for sure, i need to keep that in mind...

thats horrible.. im very sorry to hear it

this is what the amaoznian shamans think LOL they think there is a link..

ok

ok me too.. ive had bad concussion and some neck issues

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Hey Merkan!

It sounds good..

What type of videos were you looking at shareing?

Would you be intrested in members / sufferers who are intrested to share there storys and journey with hppd on the HPPD U tube channel?

Why not.. i would do it, id be transperent and share my story.. maybe it would get the intrest of compassionate people who want to help.

maybe we could link the videos to:

www.gofundme.com

and raise money for some treatment / reaserch etc etc

What are your thaughts ?

Thanks

 

Nice vid man, sharing and putting your story out there takes a lot of courage. Hopefully it´ll help somebody else and be somewhat "therapeutic" for you as well. Gotta say you seem like a positive guy with a healthy outlook on life!

Thanks man..  sure, i think its a good thing i suppose, i also want to "get good" at video to promote my other business.

Yes, its the right thing to get it out there and possibly "help" others.. i suppose its theraputic to share in this way. It builds "emotional muscle"

Thanks! i would really like to meet many of you people in person

 

Nice work mate, takes a lot of guts IMO.

You seem like a positive person despite your handicap so good job.

thanks bud. for sure.. i am positive, i dont like to see myself as having a "handi cap" tho .. take care too!

 

I feel your pain. And I also find klonopin or benzos in general to help but yes, you've stated the truth, that its easy to just keep upping the dosage and once the benzo wears off you're like "shit man! This sucks."

I'm happy you made this video though! ☺

It takes balls to move on from something like this and not be a total basketcase! Cheers friend!

take care too

thanks man. I appreciate it!

Yeah i have been benzo free since the start of the year and it hs been a real transition. Things have really changed/ Thanks so much friend, take care too..

Great man! Once again i feel glad (well, we all got this so you know i mean it in a good way) to see another face of HPPD. And a voice. You seem like a great, humble guy and it really isnt fair you, or anyone else for that matter, to have this.

I would like to do one if my own, when i can get som proper equipment up and running.

Thanks man! yes , agreed .. its good to see another "face of HPPD" you can see im a normal person, mostly  lol .True it really does seem very unfair for many of us hppders to be enduring this!

It would be great for you to do your own video, i do hope to see it soon. I may re-do mine also in more depth and detail..

ok it sounds exellent.. i sent the links through to a specalist, will have to look into it more... thanks

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hey thanks jess.. !!!

i think its a good idea also..

I kept this one short and to the point.. tho feel like there is much much more i could say and share about my experience/s, likley it would shock people

this is me a real person and real hppd