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    • By onelovez
      Hey guys. 
       
      I would like to help the community and myself to find some ways to treat HPPD. This forum is great for talking about our problem, but I think its lacking some organizational features that are very important to connect all the dots. Also there is lot of digging to be done to find all the useful informations scattered around the forum topics. I think apart frome the forum we need something extra, something organized. My idea is to build a website with specific functionality. Sort of a HPPD Encyclopedia.
       
      Rough sketch of my idea - the website would have:
      Database of users. Each user would have his profile, where he could include information like:
      - His story of HPPD (possible causes, duration, przebieg???? etc.)
      - What has helped ( name of the drug/supplement/treatment/excercise, how he reacted to it/comment side effects) (X)
      - What has harmed him ( name, reaction/comment, side effects) (Y)
      - What hasn't affected him ( name, reaction/comment/ side effects) (Z)
      - What he plans to try
      - Other comments, ideas, experiences.
       
      Database of drugs/supplements/treatments/excercises - this would be a list of all the drugs etc. next to every drug there would be number of positive, neutral and negative votes (how many people it did help, did nothing, harm them).
       
      Users could click on any drug/supplement etc. and see information like:
      - Name
      - Description
      - Interactions with other drugs
      - Side effects (especially the side effects reported by people with HPPD)
      - List of all users that it has helped (name of user, reaction/comment) (X)
      - List of all users that it has harmed (name of user, reaction/comment) (Y)
      - List of all users that didn't notice change (name of user, reaction/comment) (Z)
       
      Now look at the X, Y and Z. Whatever user would input into his profile, that information would be listed also under each drug/supplement etc. This way if few hundred people write out their experiences with different things, we will get a good statistical data on each of them, and will be able to draw some conclusions. 
       
      If we want extra functionality, one page could be like a facebook wall - showing the latest activities, but lets focus on the basics ones first.
       

      Graphics design - we want to make it as simplistic and cheap as possible.

       
      I think this is a tool, that would give us good view on the matter and would ensure that no information gets lost.
      For example, I found one post on some polish website saying Vinpocetine helped somebody with VS. That was only 1 post I found thorough the internet on vinpocitine and VS. I could report that information on the website and then other people could try it out if they wanted to. Having this kind of website, would save us jumping from post to post on forum or facebook groups and whatnot - all the information we want would be in ONE place. Maybe some pattern will emerge like - people who got HPPD from antibiotics get relief from the drug "x", people who got HPPD from acid are most likely to get help from the supplement "y". On that website we could encourage people to do DNA tests to see patterns in them too and so on..
       
      On the website we could include all the information we have on HPPD, its description, causes, together with any scientific reports - this would be great then to present to doctors, professors, scientists etc. I think its gonna be a great portal for spreading awareness about the condition and its severity. One will be able to actually see how many people are affected by it.
       
      I am not a website coder - I am more of a visioner. I hire people to build websites for me. I would love to be able to do it for the community but at the moment however, i have no cash - I am after being very unlucky (or stupid) with my investments. 
       
      If there were people interested in creating such a website we could share the ideas of what functionalities we want on the website to be.
       
       
       
       
      There are some ways to go about it:
      - If there is any webdesigner in this community, that would be willing to do the website for us - that would be great.
      - We could make a fundraise and then decide whos gonna do the website.
       
      I am willing to spend my time on supervising the construction and improvement of the website.
       
      I don't know yet how much could it cost.
       
      Yesterday I talked with a friend of mine, he said this kind of website could take him anything from 30 hours to do. He made a note, that if we get somebody from internet to do it its probably gonna take more. I don't know how much he charges yet and if he is gonna have time to do it ( he will let me know soon) - however im living with this guy right now, he is a cousin of my best friend, which means - he would not rip me off for one cent - which I believe happens in this industry a lot. If we get somebody to do it remotely, there is no way of veryfing how much time he actually spent on the website etc. This friend of mine is programming and building websites all his life, working in a corporation etc. basically he knows what he is doing. He could commit 4 hours every weekend to build this website, which would mean it could be finished in let say 2 months.
       
      This is not by any means a way to try to make money - anybody interested will be able to view commits (new code added) and verify the work.
       
      My rough estimate is that the website could cost around 750 euro, but lets wait and see what the guy will say. However from my experience its good to assume its gonna be little bit more expensive.
       
      On the website we could post some adds and the money from it could go to the website development or any future HPPD researches - or we could have no advertisement, thats up to the community. I believe however that we do need some cash.
       
      Please let me know of your thoughts - all comments are valuable. 
      my contact hppd90@wp.pl , facebook: Pablo Esscobar from Rio De Janeiro
      Pablo
    • By onelovez

      Hi everybody.

       

      I hope im not crossing any rules of the forum by this post. I think this is a really important matter, so I have let myself risk it and post about it in other sections of the forum too to reach as many people as possible.

       

      Plus people from outside the forum, couldnt access the beyondhppd online section.

       

      Please check out this post.

       

      http://hppdonline.com/index.php?/topic/4459-i-have-an-idea-for-a-website-that-could-help-us-in-finding-solutions/

       

      Thanks

    • Guest
    • By onedayillsailagain
      I came across SciOpen Research Group (SRG), and thought: "Awesome!". They now have an IndieGoGo campaign to raise funds for microscopic tissue analysis to assess the effects of J147; a potent neurotrophic Curcumin derivative that's orally active.

      They are a self-proclaimed "Guerilla Biotech" research group. I'll just post the video, so you can see for yourself:
       
      Bridging the "Valley of Death":




      Introduction to SRG:
      https://www.youtube.com/watch?fv=4x4efcbRRWg
       
      Now their main focus is ALS, however this is just their first project. They are interested in any neurogdegenerative disorders.
      Now I'm not saying they'll be interested in HPPD, or if they can even do something for it, but I just wanted to post this as I found it an inspiring example.
      Perhaps, if they are successful, more initiatives such as this will take off, and somewhere along the line HPPD may become a focus of research as well?
      Or, whatever fruits such endeavours bear, may be applicable to us.
       
      Either way, I found it post worthy.
    • By propat45
      I found this article published in June of 2013.  It's definitely worth reading.
       
      I tried uploading the pdf file in research articles, but the file is too big.

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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