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Hey, I'm with you. This is a neurological disorder with manifestations of mental illness as a by product but leave the thinking to the experts. Our job as laypersons should be getting some badly needed attention to this disorder. You're doing great OldSchool. Wish others would follow.

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When I describe it to my wife, I use the term mental illness too, as that is how I feel... That my mind is ill/sick/poisoned.

 

Sure i understand what your saying Jay...

 

Yeah... MDMA spun me quite badly post HPPD also..

 

 

yes right on Hope 1.. Just like Jay says...

 

 

HPPD is only the visual neurological condition, not any mental illness/disorder we might associate with it.

 

Thanks.. absoloutley..

 

Good idea leave the thinking to the Experts.

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I love it.

You guys can sit around the campfire all you want arguing the particulars surrounding HPPD but it won't make a lick of difference.

Outreach

Advocacy

Funding

Results

 

If you want all those things, then it is better for us all to be on the same page when describing what HPPD actually is. Ever thought of that?

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thanks for shareing what i already knew..

 

yes HPPD is a  Nurological Disorder that is phyisical

 

NOT mental..

 

HPPD is NOT a mental illness.

 

Dr Abraham is a Psychiatrist, not a Neurologist.  HPPD is technically defined in the psychiatric community (DSM), not the neurological community.

 

The mental/physical debate is driven by fear and prejudice.  Yet as early as the 1950's (and Ernst Gellhorn's book, Physiological Foundations of Neurology and Psychiatry), there is not a line between the two.  Schizophrenia is a neurological condition.

 

It would seem obvious that a recreational drug would cause to neurological response ... 'tripping' isn't a placebo.  LSD isn't just a sugar pill (pun intended)

 

It this relevant ?

 

 

If you want all those things, then it is better for us all to be on the same page when describing what HPPD actually is. Ever thought of that?

 

To effectively communicate, people need common ground.  If the medical community defines HPPD as a Hubbard Squash Plant, then we have to work with those terms.

 

Its academic (not of practical relevance; of only theoretical interest), yet to get help from academics (scholar in a college or institute of higher education -- researchers) it IS relevant

 

 

 

SMDH

 

Badgering and belittling is not productive.  You want to advocate? ... then do so.  You want to collect funds? ... then do so.  But if you go door to door and berate those who think different than you, it will reduce the contributions that you could receive.

 

Just get it done already

 

Was it not also reported that the medical community no longer wants to hire David because of HPPD?

 

A while back you said you wouldn't talk HPPD to your local doctor for fear you could lose your job.  Have you now changed your mind?

 

im not going to argue with you.

Be constructive and focused is all I'm going to say.

 

That would be a refreshing change.  Don't let your frustration cloud your zeal for the cause, otherwise is saps your strength and drives others away.

 

 

 

If people want to start a constructive drive for HPPD research, how about talking with Dr Abraham for ideas and direction.  He has made a large dent in researching this disorder.  There is even a recent interview he had with a 'visual snow' group in Europe.

 

He clearly has interest in helping people with this problem ... not just had but has.  He is only a phone call or an email away.  http://amrglobal.powweb.com/contact

 

 

That said, the video idea is great.  Isn't their already some on YouTube?  Can something be done to make them viral?

 

Then we have a possible opening with Dr Nutt, all because of a member's willingness/enthusiasm to email.

 

Then we can piggyback with visual snow groups.

 

I've already offered to collect DNA samples for research, though few have responded.

 

 

There are many direction that can be productive.  But there are also lots of things that people can do now to help themselves.

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Further Note Regarding MENTAL vs PHYSICAL

 

Throughout the history of this forum, there have been members who are adamant that it is NOT a physical problem.  They’ve taken offence or become fearful and left.

 

Depersonalization (DP) is common with HPPD.  If you look on DP forums, you will find the same problem.  Many, if not most, feel it is psychological and not physical.  Why?  Because they feel powerless to change if it is neurological.

 

Look further there and you will find that a significant number of DPers have visual symptoms.  Furthermore, many (around half) developed DP after a ‘bad’ recreational drug experience.  Basically, they have a form of HPPD and don’t know it.  Tell them its HPPD and most flip out.

 

It doesn’t take rocket science to spend time on these forums to see these patterns.

 

For those who are afraid they can’t get well if it is a neurological problem, they fret and often decide to believe it is purely emotional.  And if connected to drug use, they don’t want to feel guilt at having harmed their body.

 

For those who are tired of the ‘its-all-in-your-head’ mantra, they take exception to the ‘mental’ classification.

 

YOU JUST CAN’T PLEASE EVERYONE

 

In order to think clearly, one has to be able to think.  You cannot do that when in the throws of anxiety/depression.  Those emotion states are ‘vigilance’ by brain structure and interfere with cool, logical reason.  Vigilance is about fight/flight, but you cannot quickly run away from HPPD.

 

So, to the chagrin of some, I advocate addressing anxiety as the number 1 priority.  It is the largest cause of disability with HPPD.  It is also the worst quality of life.  Yes, the visuals suck, but often other things are worse.  And for a significant number of sufferers, addressing anxiety is sufficient to get HPPD to back down or even go away completely.

 

Many suffer sleep disorders.  It is reasonable to address that.

 

Some HPPDers suffer physical pain.  It is reasonable to treat that.

 

The list goes on - There are important steps a person can do NOW.  Advocate and seek research if you like, it is a humanitarian thing to do.  But don’t neglect what is available at this time.

 

 

In making advocacy to the PUBLIC, it is important to NOT scare them.  Instead they need compassion aroused.  Many will shy from the stress of people arguing.

 

In finding advocacy among researchers, they need to feel intrigued.  And for some, they need to feel career advancement and/or money.

 

Forming advocacy is a type of teamwork and needs all the tools of tact to make it work.  Partners will look for stable relationships.

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Dr. Abraham has contributed immeasurably to the condition but he's old. There was tal several years ago that he retired. Has he? Does anyone know? Has he mentored someone to take his place? If this community doesn't know then the answer is fairly clear. As far as me belittling anyone goes, any sneering remarks are a by product of frustration. When someone says they have all the tools to produce an hppd documentary says their willing to do it, it's uplifting, gives people hope but when that same individual repeats the willingness to get started on such a project a year later, eventually one loses a bit of faith.

Have I disclosed my condition to medical practitioners aside from Dr. Abraham? Yes. Has it affected my ability to work? No. That part is under the domain of the condition itself.

Look, I'm not trying to cause problems but to find ways for us to be productive and follow an agenda. David had a plan and took meticulous steps in following it and made remarkable headway in getting some badly needed attention to HPPD but when you look at things from a strategic standpoint, despite his great accomplishments, it's only straching the surface. Progress between Dr. Abraham and David began and ended with them. The VS interview was a great help but it was coordinated, shot, edited and aired by a sufferer, not a medical practitioner, research group or non profit organization. Someone just like us who wanted help and tried in his own way to make a difference.

We are not organized.

We have no direction.

No voice.

No plan.

Only this website where we can share coping tips and treatment experiences with existing and new members.

Again, I don't think that was the sole intent and design of David's work. If that was the case why bother going to school? Why bother getting published and interviewed? That's how you make headway and progress.

I personally believe that the way to get research started which will lead to effective treatments, not the band aid garden variety, is to form a non profit, try to get member donations to hire a fundraiser who has experience in working in the medical field, has the know how to write and apply for grants and work with Dr. Abraham while sourcing other, younger, brilliant minds that are intrigued by hppd and who posses a sense of empathy. Not to forget that psychologist/author whose son acquired hppd as a spokesperson/researcher and I think we as a community stand half a chance. It's all about keeping the momentum alive and making progress because if all we are is regelated to a forum then what's the point in ever talking about research?

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Visual,

We have all the data to make the case that there are a substantial number of people who contract hppd. The patient pool is there. All the pieces are on the table to make things happen and you with the way you write and articulate hppd can be instrumental in making things happen. Second to David, nobody understands this condition as you do. Why not take over where David left off? Nobody has heard peep from him lately and with that said, now what?

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