hope1

AGGRESIVE ADVOCACY

123 posts in this topic

One doctor said they are not hallucinations if you don't believe them - an interesting perspective.

4

Share this post


Link to post
Share on other sites

So we are slightly if not completely schizophernic?

A common question (and fear). It hinges on whether you are "delutional".

http://en.wikipedia....i/Hallucination "A hallucination, in the broadest sense of the word, is a perception in the absence of a stimulus. In a stricter sense, hallucinations are defined as perceptions in a conscious and awake state in the absence of external stimuli which have qualities of real perception, in that they are vivid, substantial, and located in external objective space."

http://en.wikipedia.org/wiki/Delusion "A delusion is a belief held with strong conviction despite superior evidence to the contrary. Unlike hallucinations, delusions are always pathological (the result of an illness or illness process). As a pathology, it is distinct from a belief based on false or incomplete information, confabulation, dogma, illusion, or other effects of perception."

Note: Our disorder is HPPD, not DPPD

3

Share this post


Link to post
Share on other sites

I take some credit for the recent spike in traffic and I will tell you how and why.

I am scanning any and all drug (both pro& con) and neuroscience groups/pages on Facebook with the intent on joining the conversation and posting the link to the website where and when the need is warranted and the information applicable. I never blindly post the link as I feel it best to create reference to the conversation along the thread.

There are scores of Facebook groups and pages I have yet to access as I'm just one person but I find this is the best way to jump awareness on a quantum level if more members got involved and stated their case. It would also help if the more scientifically inclined poster (visual, mg, etc) also helped in this endeavor as posts like theirs could further create interest, stir scientific debate and get this condition the attention it deserves.

1

Share this post


Link to post
Share on other sites

One doctor said they are not hallucinations if you don't believe them - an interesting perspective.

For people with this view what we have ("hallucinations" that we know to be false at the time of their occurence) are called pseudohallucinations.

However on the semi-conscious brink of sleep I have had hallucinations and delusions that had me thinking I was schitzo for a while. I now think of it more as a sleeping disorder but I do fear that it could mean I will develope schitzophrenia at somepoint.

1

Share this post


Link to post
Share on other sites

The media is a powerful tool that we are not exploiting to its full potential. Outreach is the key to bring awareness to this condition. Perhaps starting out with national community groups like the PTA or the Scouts to get people, especially parents involved. On the subject of parents there are those that take preventative measures in educating their kids about drug use, parents that are accepting of limited drug use, parents that are in denial of their kids involvement in drugs and our parents who don't know wtf is wrong with us and feel powerless to help. Maybe contacting the PTA is a great start, one that I'm sure will lead to new avenues and perhaps recruit other researchers willing to help and take on the challenge that is HPPD.

1

Share this post


Link to post
Share on other sites

Sometimes you don't know what you had until you've lost it.   It's hard to convey the importance of the issues we try to teach the teenagers.   Once they've experimented too much or got caught in a weird situation, the suffering becomes apparent.   My problem as a teenager was i dont think i had all the information i needed and therefore made some wrong decisions.  [i.e.- as a teen i didnt know viruses almost always stay in the body until you die.]   I don't think a lot of chemicals/foreign agents  are bad for you in nanodoses but many are and if misused can be disasterous.   

0

Share this post


Link to post
Share on other sites

^^^And until parent/teacher groups are made bluntly aware of the problem, I don't see how we can gain the necessary traction we so badly need in drawing attention to this death sentence of a disorder. The key is children who are at risk but don't know the consequences.  I think this is an avenue that has not been explored or exploited but absolutely should. Complaining to neuropsychiatrists will get us pills and talk therapy but concrete actions will never be taken until we take the research that has been done and douse it with a PR campaign that will get the wheels turning. Letters, blogs, parent teacher meetings, anything but if we don't act as our own advocates nobody will.

0

Share this post


Link to post
Share on other sites

The PTA ...?  IDK maybe.  ...yea they should be aware.   Nobody talks about torture that doesn't end.  It's all about some minute fucking detail on some shitty History quiz you are worried about,  instead of the torture. This shit is torture!

0

Share this post


Link to post
Share on other sites

Ok, I started my own HPPD site. I will expand it as time goes on. Hopefully I can compile more video testimony.

www.drugdamage.com

0

Share this post


Link to post
Share on other sites

my mistake its .org

I made it on impulse but will continue working on it today.
I make direct reference for people that are interested to read the dana and new yorker article and to come here. I will start calling school administrators once I feel the site is presentalbe but would appreciate content from anyone here with the scientific background which I lack who can articulate the condition effectively.

0

Share this post


Link to post
Share on other sites

And as much as I appreciate your words Odysseus, this is an act of desperation. I want out of this nightmare and I'm doing something to make that happen. If I have to live this way, at least I feel as though on some level I'm trying to make an impact that could in some meaningful way draw more attention to this disorder and get the science community interested in what went wrong with our minds. This is no way to live plain and simple.

0

Share this post


Link to post
Share on other sites

Totally agreement from me.. Good for you my friend and way to grab the bull by the horns with ur initiative approach. It will contribute to good cause.. Hppd24years!!

0

Share this post


Link to post
Share on other sites

Well, here I am putting my money were my mouth is...
Finally finished the website I said I'd create. It's simple but that's how good things start but I do implore anyone who feels like making a contribution to the website to make it more credible, anyone that has a strong foundation in the science behind HPPD and can articulate it in a manner that would entice researchers to get involved to PM or email me neurogen00@gmail.com. I feel I've done all I can based on my knowledge and skill set in setting up the website and providing it's content. I'm not a webdesigner or scientifically inclined like most of you but I am a fellow sufferer who wants to have life restored before the onset of HPPD. If you are capable of helping then please, please contact me. We are all we have after all...

Best,

Hope1

www.neurogroup.org

2

Share this post


Link to post
Share on other sites

I have composed a form letter that is specific in terms of outreach and advocacy for the HPPD community to complete, share and submit to the appropriate representative and legislative body. Please review the material and make the necessary changes applicable to you.  This is the one and only outlet to make your voice heard and demand funding for HPPD research.

http://www.neurogroup.org/HPPD_ADVOCACY_%26_OUTREACH.html

0

Share this post


Link to post
Share on other sites

I'm in need of 4 board members for the foundation who must meet 3x by the end of 2016 by virtual meeting and one 1x per year thereafter. The work load is beyond minimal unless you want to take a participatory lead. Please contact me if interested at info@neurogroup.org.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now