Jay1 Posted August 24, 2023 Report Share Posted August 24, 2023 I've just been reading this article and, although unconnected to HPPD, it is a great example of never giving up hope for a cure. https://www.wired.com/story/brain-implants-that-help-paralyzed-people-speak-just-broke-new-records/ Imagine having the disorders discussed in the article. They must have felt all the same frustrations we do of having an uncommon, understudied disorder. Then a leap of faith and a technical leap cured both of them. Amazing! Keep the faith, you never know what is around the corner. 4 1 Link to comment Share on other sites More sharing options...
brake Posted August 24, 2023 Report Share Posted August 24, 2023 Yes I remain optimistic as well. I think we can cure schizophrenia, HPPD, visual snow and other things as well one day. 1 Link to comment Share on other sites More sharing options...
joegives Posted September 28, 2023 Report Share Posted September 28, 2023 Thanks mate. A good reminder. Link to comment Share on other sites More sharing options...
Siren001 Posted September 28, 2023 Report Share Posted September 28, 2023 Hope is built on actions not waiting around for something to come along. 1 Link to comment Share on other sites More sharing options...
Siren001 Posted September 28, 2023 Report Share Posted September 28, 2023 (edited) Think about it this way, if Michael J. Fox waited around for something to come along instead of taking ownership for Parkinson’s Disease, his disease, no progress would have been made. Chances are he’ll live to see the day when a cure will be available for Parkinson’s due to all his advocacy, outreach and fundraising efforts. That’s how this works not by day dreaming for a cure or venting online how awful a disease is. Edited September 28, 2023 by Siren001 1 Link to comment Share on other sites More sharing options...
Jay1 Posted September 29, 2023 Author Report Share Posted September 29, 2023 What a way to introduce yourself to the forum!! I'm not saying blind hope is ALL we should do, if you actually took the time to read people's posts on here (spanning 20+ years), you would know that we are some of the toughest, hard working people to try and find cures, guinea pig ourselves, help each other and build mental resilience... But some degree of hope is placed in the hands of scientists and other people out of our control. To use your terrible analogy... Is Micheal J Fox working in a science lab to find a cure... No... He is fortunate to have a platform based on celebrity... We don't.. Also, plenty of his hope is in the hands of other people. 1 1 1 Link to comment Share on other sites More sharing options...
Siren001 Posted September 29, 2023 Report Share Posted September 29, 2023 (edited) You don’t need a celebrity platform. Plenty of celebrities have died from various diseases accepting that the disease process is just a part of life. Perhaps that’s exactly what we should all do here because organizing and doing the work that hundreds of non celebrity tied disease centric organizations do is just not in our DNA. As far as acting as Guinea pigs goes, I’m not saying don’t do it, I just think that’s taking on more risks on an already bad situation. We need the help of scientists to fully understand this condition not waiting around for something that may never come in terms of a treatment, there are people on this forum who have already waited for over 20 years for a medical breakthrough that sadly still hasn’t come. Waiting is not going to do a damn thing. Take control of your disease by organizing…. At the very least fight to have your minds restored to the condition that they were in, to see the world the way it was intended but personally I miss drinking coffee, happy hours, even smoking a joint in the beach watching the sunset. How I would kill to enjoy any of those things again but the plan is to wait? Wait for what to die? Sorry, I prefer to fight rather than waiting around for a miracle that may never come. There is no treatment, no cure without taking in responsibility for our situation. The moment you realize that that’s when you’ll either dig deep and find the courage to do what’s right or surrender. You choose… Edited October 3, 2023 by Siren001 Link to comment Share on other sites More sharing options...
Jay1 Posted October 2, 2023 Author Report Share Posted October 2, 2023 Rather than coming on this post pissing on everyone's chips... Why not make a post about all the amazing things you are obviously doing to help the cause, maybe you'll inspire people into action. 3 1 Link to comment Share on other sites More sharing options...
Siren001 Posted October 3, 2023 Report Share Posted October 3, 2023 (edited) Lol, why put on me? You’ve been here more than 20 years. What’s your plan to sit around waiting for 20 more? Nobody is coming to help us. Nothing is being done about HPPD. The one thing that is happening with psychedelics is that they are coming to the market! Imagine all the money stakeholders will make who don’t want a single word mentioned about HPPD but go ahead, wait around for something magical to happen. You’ll end up old and grey (if you’re lucky) with only a few marbles left rattling in your brain. YOU ARE IN CHARGE OF THE LARGEST ONLINE SUPPORT GROUP IN THE WORLD! What are YOU doing with it?! Maybe you should get everyone to donated to the PRF or whatever non profit that exists to fund research but instead, most people just vent here and mourn their old life! You know what? People with health issues, with chronic diseases don’t do this, they don’t wait around hoping for something to happen! In fact, they very idea of hoping without action is totally absurd. Do something meaningful with this group for Christ sake! Edited October 3, 2023 by Siren001 1 Link to comment Share on other sites More sharing options...
Siren001 Posted October 3, 2023 Report Share Posted October 3, 2023 Everyone, gather around. That HPPD research in Australia is really our only hope so considering that there are around 40,000 people here, about 10,000 on Reddit and a few thousand on Facebook, together we could all fund this project on our own. ”Link To Donate” ———- That’s hope not this stupid circle jerking of false hope. That’s what you should be doing with this website instead of wishful thinking. Link to comment Share on other sites More sharing options...
Naldarrin Posted October 4, 2023 Report Share Posted October 4, 2023 Just saying....I know how you feel. but i do have to rephrase Jay's earlier question... Why come on here and tear into folks? It's one thing to say get off your butts and do something, but did it ever occur to you that people supporting each other IS doing something...just not that your assigning urgency to. Ya know...try not to judge where someone else is in their journey. Your right. Having this is hell. I cant do much. But I can offer support in words. it's all i have. I'll support those having a shitty time adjusting to this condition, I'll listen to the venting when we get tired of having to live this way, I support your drive to raise awareness in the medical community as well. \ You want to know what will get people's attention fastest? If we show them something different. People who suffer from a condition, yet all support each other. Link to comment Share on other sites More sharing options...
Jay1 Posted October 4, 2023 Author Report Share Posted October 4, 2023 19 hours ago, Siren001 said: YOU ARE IN CHARGE OF THE LARGEST ONLINE SUPPORT GROUP IN THE WORLD! What are YOU doing with it?! My general goal is to do what I can to help new people who visit here and try my best to stop very concerned people from killing themselves (dozens upon dozens in my years here, via PM). That's what I'M, doing with it... and hope plays a huge part in that and there is valid reason for people to be hopeful, especially new visitors who often recover. Btw - I'm not in charge of shit... I just help keep it running and help remove spammers. 2 Link to comment Share on other sites More sharing options...
Jay1 Posted October 4, 2023 Author Report Share Posted October 4, 2023 btw Siren... why do i get a feeling you are the same person who's been harassing me on Reddit!? If it is, as I said on there... I'm glad people like you are pushing the medical/research side... But there are many ways to help... Your way isn't the only "right way". It's almost funny that I now get personally called out and attacked for being "in charge". 1 Link to comment Share on other sites More sharing options...
Siren001 Posted October 4, 2023 Report Share Posted October 4, 2023 (edited) Wanting to help people is fine but it never stops. You’ll never ever get to a point where the suicide PM stop. And you must have saved some people, maybe bought them more time but a lot of them are no longer with us. The only way to truly help is to get that Australian research funded…. Edited October 4, 2023 by Siren001 Link to comment Share on other sites More sharing options...
Siren001 Posted October 4, 2023 Report Share Posted October 4, 2023 My boss once told me in regards to a deal I was involved in,”if hope is your only plan, you don’t got a plan.” Link to comment Share on other sites More sharing options...
Jay1 Posted October 4, 2023 Author Report Share Posted October 4, 2023 5 hours ago, Siren001 said: The only way to truly help is to get that Australian research funded…. That sure sounds like hope to me 1 Link to comment Share on other sites More sharing options...
Siren001 Posted October 4, 2023 Report Share Posted October 4, 2023 Well, yes and no. The price tag for the research is $800k. That’s the bad news. The good news is the university is matching funds bringing the cost down to $400,000. So, considering this website is pretty much dying in light of social media apps, yet it has email addresses of the highest count of people with HPPD, why not use it to raise awareness on the MacQuarie Protocol and fund it? We’re the ones who have to save ourselves because nobody else will. You’ve done great work Jay, don’t get me wrong but things have to go next level here. There needs to be a campaign stemming from this website to fund the HPPD research program at Macquarie University. Please consider it… Link to comment Share on other sites More sharing options...
Siren001 Posted October 5, 2023 Report Share Posted October 5, 2023 I’m asking you to assume the responsibility of fundraising for the research using this portal. Link to comment Share on other sites More sharing options...
Jay1 Posted October 5, 2023 Author Report Share Posted October 5, 2023 I have sent various bulk emails for an Australian research group... I assume it is the one you mentioned... My memory is terrible. Anyone is welcome to PM me about sending bulk mails. You seem to be of the assumption that our mailing list is 100% active, it's not even close.. Anecdotally, I would say that it reaches fewer than 1-5% of the list numbers. Link to comment Share on other sites More sharing options...
Siren001 Posted October 5, 2023 Report Share Posted October 5, 2023 (edited) So essentially, there is no hope. I’m so sad, for all of us. Thanks for trying Jay. Didn’t mean to be so salty. Edited October 5, 2023 by Siren001 1 Link to comment Share on other sites More sharing options...
Jay1 Posted October 6, 2023 Author Report Share Posted October 6, 2023 I guess we are gonna have to keep buying lottery tickets! As sad and horrible as this sounds... We are probably now reliant on the inevitable law suits when HPPD explodes with the rise of legalised MDMA/Mushroom/LSD treatment, sooner or later someone rich and powerful will get fucked over by the treatment and some shit might actually start to happen. 1 Link to comment Share on other sites More sharing options...
Siren001 Posted October 6, 2023 Report Share Posted October 6, 2023 It’s funny you say that, I received a PM from a registered nurse who underwent Ketamine or MDMA therapy to help in dealing with the grief she experienced after the loss of her mother that found a post of mine on FB with a hash tag on mind mend and HPPD because after getting therapy, she got HPPD. They refunded her and ceased contact. Link to comment Share on other sites More sharing options...
Siren001 Posted October 6, 2023 Report Share Posted October 6, 2023 You just gave me an idea… Link to comment Share on other sites More sharing options...
TheForeverTrip Posted October 6, 2023 Report Share Posted October 6, 2023 I thought it was over, and then I read a article about how living with this can actually enhance our perception of the world, that some people with our disorder have actually looked at it as a positive thing, like you are in tune to the universe in a unique way. Granted these thoughts can be dangerous for people also suffering from a schizoaffective disorder, but its helped me. This is the largest forum but there is so many of us out there that might not even know they have it. According to the DSM-5, 4.2% of all hallucinogen users experience HPPD-like symptoms. Think about all the possible rockstars that have suffered from HPPD in the 60s/70s, who knows maybe the beatles started experiencing similar symptoms. I wish I could post the article I read, but it doesn't seem like I can paste links, its called On Perception and Consciousness in HPPD: A Systematic Review from frontiers. I really think we are in the generation where we find a miracle cure. If not something that will make it much much better. I think it will come off actually curing another disease. I have found hope and hope others will! 1 1 Link to comment Share on other sites More sharing options...
SomebodySomewhere Posted October 6, 2023 Report Share Posted October 6, 2023 (edited) Forget it, it's not worth it. Edited October 6, 2023 by SomebodySomewhere Me no likey interweb 1 Link to comment Share on other sites More sharing options...
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