17 posts in this topic

I am here for several reasons.  

 

Foremost, my 23 year old son has HPPD and I am personally touched by this.  His struggles parallel what others feel and experience as written here.   Living with HPPD is a private hell – seems.  It is met with misunderstanding and judgment from an insensitive society and an uninformed professional medical community, generally speaking, with exception of very few doctors who are HPPD champions.

 

It seems most members here are unofficially diagnosed… seeking information what to expect, where to go, how to feel better, lead life unencumbered.  What a Godsend this forum is.

 

I am here because I believe HPPD sufferers need advocacy…  This means caregivers and the community leaders are needed to speak for them when they cannot, to represent their needs, to make a difference, to carry a torch and make inroads in research and awareness.   To YOU, I extend my hands to help, my heart, my time.   I am a psychologist, researcher, and writer…. and I care very, very much.  So many faces, different places, the stories so similar….  Too little resources, no place to turn, just each other to help.  I am only one person, but bring it on… and let’s get started to do something good.

 

Please visit my website, Faces of HPPD  www.facesofhppd.com which is established as a project to compile information about HPPD from those who have received official diagnosis and treatment, so that all can learn about living with HPPD.  Faces of HPPD is not intended to compete with this forum… but to expand the sharing of resources and knowledge.   I hope in some way I can be a force to make a small difference.

 

God speed to each and everyone of you! 

 

Doreen Lewis, PhD (in Florida)

 

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Hello Doreen,

I'm sure all of us here can appreciate this news! Your son is lucky to have a mother who's so interested and understanding. My mother supports my basic needs now that I can't anymore, and listens, but she doesn't really understand despite my numerous attempts to explain. Thankfully she allowed me to move in with her again, as I had moved out at an early age long before I acquired HPPD.

Back on topic though:
You do seem genuinely interested in helping, which is great! Moreover you do seem to be quite aware and understanding of the situation, especially the lack of professional interest and awareness. I myself have thought of creating some kind of "Guide to HPPD" for both public and professional interest, in the form of a website. Yet my cognitive dysfunction is quite severe, so it would prove very difficult, and I've focused my limited resources on the neuroscientific side of the story instead. Thus, I'm glad that someone else is interested in raising awareness. Besides, PhD tends to sound a bit more convincing ;)

Whilst I have an official diagnosis myself, I don't feel eloquent nor comfortable enough to share my story just yet. But I'm sure there'll be others that would like to help you out in this regard. May I ask when you plan to publish the book / do you have a deadline? I might reconsider, as I'd like to help any way I can.
I don't know if you can access the blog area (you should, but other members have had difficulty with this), but I've kept a blog for a while now. Perhaps you may find some insights there, though I must caution it's not all sunshine and roses.

Tomorrow I'll be contacting the HPPD specialist that has been helping me (yes, one of the few). If you like, I can mention your dedication and ask if he would care to collaborate with you. Though he's Dutch, but I'm sure his English is fine.

If there's any other way any of us can help, please do let us know.
Many thanks for your efforts,
Odisa.

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Hello,

 

It certainly seems that your site will not be competing with this forum as it does not appear to "expand the sharing of resources and knowledge" but, rather, promote your upcoming book. There is nothing wrong with this per se but is this likely to change in the future? And will the stories that are submitted be available to view on the site?

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Reply to Odisa and Chris,

 

Odisa - Thanks for the feedback and please know your identity in association with your story would not be publicized (collected only for the author's eyes) and you may use first name only or another chosen name you'd like to use to maintain confidentiality.  The only reason contact information is collected is for the author to communicate with you.  You would have a chance to review the story before publishing.

 

Chris- Oh ouch!  Please let me state to you with strong emotion that this is no money-maker to line someone's pockets or post here to "promo" an upcoming book. YES.... I hope there are proceeds!  But please know, part of the proceeds are towards helping HPPD.  That may include providing gratis book copies to those who cannot afford it as well as spreading the word to medical professionals.  If a traditional (hopefully major) publishing house takes it to print, there are restrictions on posting entire contents online. I plan to expand the Faces of HPPD website with content that is scientific, documented and founded in the literature.


Thanks!

 

Doreen   

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It wasn't intended to be an "ouch"; I asked the questions only because the site seems to be lacking in content at the moment. All the same I find your last sentence very encouraging and wish you luck with both the book and the site.

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U know this is an approach to get this disorder into the eyes of the public and professionals for a positive impact and awareness potentially at international level. Yeah check out the credentials and the 23 year old kid feathered by the authenticity of legitimation in the angle of her regard. However do take into consideration of the potential here and the snow ball effect that could benefit all hppd peeps from a wide array of spectrum. Keep in mind people do get paid for their careers and jobs don't think they are scandalously motivated by monetary and lucrative reasons. Respectfully Hppd24years going on a consecutive 25.

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Just to be clear, when I stated I was going to send an e-mail blast I was suggesting a mass e-mail to all members advising them of the opportunity.

 

Nobody has been motivated to work with HPPD expecting to get money (Not many HPPD books out there for a reason). Dr. Abraham's research, if you look carefully at the publications, did not involve major grants and often done without funding. 

 

I am glad to see such a family effort in the project and my guess is participation has been low because of lack of visibility. I hope to change this. 

 

Cheers!

David

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Dr Lewis,

 

Your survey looks great.  And being screened by a professional is important to get reliable data.  I realize that you are a psychologist, not a psychiatrist/neurologist.  Nevertheless, as a researcher, your data may be enriched, and HPPDers may be further helped, if you would include medication responses matched to symptoms.  It may further clarify specific systems/nuclei involved in this complex disorder. 

 

Perhaps this classification of responses is beyond the scope of your current project ... but it could be reviewed later or passed along (privacy preserved) to others in a position to pursue it.  You are already doing the vital screening work to filter out spurious entries.

 

On this forum, some of us have a serious, personal interest in this info, since finding a medication to try is difficult.  We have discussed creating such a survey but are not doctors and find this task difficult to get off the ground.

 

Thank you for your work and your consideration of this request.

 

Craig

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The whole basis of modern medicine (going back 2000+ years) is the collecting of statistics ... what works for what.  Learning from experience and documenting it for others - preserving it so people don't have to start all over again.

 

Right now we know that some meds help, such as Klonopin, Keppra, and dopamine agonists.  But it isn't not documented.  Everything is, "Wow, that help" or "Didn't do anything for me".  Often we don't know what a particular person should even try - every case of HPPD is unique in composition.

 

Until this is formally documented, people will still stumble around randomly trying things, depending on the whims of which testimonial they stumbled upon.  Doctors have no direction or suggestions on how to try to help someone with HPPD - there is no established treatment protocol.

 

 

Think of this forum as an example?  What purpose does it serve?

 

1  Emotional support

2  Shared information for solutions

 

Surveys form shared info - if analyzed and published.

 

 

That's the long answer.  The short answer is: Knowledge is power

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Dr. Lewis : What's the latest on your efforts?  I tried to reach you a couple of times, and today at least I'm unable to load the site page.  Hope there is a way I can contribute.

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This still going on? I think it's a great idea. Hell I would be thrilled if you made a ton of money because all I care about is getting this disorder in the public eye more. I think research into HPPD could be the key to understanding a wide variety of disorders and afflictions from alcoholism to autism to ADD to traumatic brain injury to post traumatic stress disorder.

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