Support Group

[Ink]

I've had HPPD for over three years now. During the winters it seems to flare up. Since day one I've wanted a support group for people to talk and share about their experiances with hppd. I read on the forums about the whole skype session idea, I think its a great one if a bunch of people would like to get together for it!

Quick question for you guys too...Have you ever met someone else with HPPD?

[GuiseppeTheGreat]

i have, and though i had HPPD at the time, i didn't know the term yet or really anything about it. We were both at the stage where we were scared shitless and didn't know where to turn, and meeting each other and just knowing someone else was out there was a huge relief for us both. Unfortunately, my friend was arrested soon after we talked and is now in jail for 7 years on charges of marijuana possession with intent to distribute (BULLSHIT). I can't even imagine what its like to be locked up with HPPD.

[mutts]

I have also always wanted a support group for this! Preferably the kind that has faces and voices! I am going on ten years now and still scared shitless at times. Would be so nice to have someone to turn to that could really understand. I have also met someone with hppd and it was rather surreal, but very cathartic in a way. I wish we could have a convention or something where we could all meet up and talk about our experience with this disease. In leu of that Skype may work. I'd definitely be willing to give it a shot!

Guiseppe-that really is very sad about your friend and a reminder that there are things to be grateful for. At least I get to deal with this disease in the comfort of my own home and accommodate it as much as possible. I cannot imagine trying to cope with this in jail.

[mandrake]

I met a girl from the old forum....she lives in a town about 120 miles from me and we meet now and again for Indian food....sitting across from someone who is experiencing some degree of the symptoms you are is incredible....I would be into a skype session too and I suggested it on the old forum...I even suggest people start mentioning their neck of the woods (Northern Arizona here) so that personal meetings can be arranged....it is amazing helpful to see other people and get a picture of their life....something about attaching a real human face to this is very beneficial....I am scared shitless much of the time too...I believe the visual problems are not going anywhere so I focus on my response to them (fear, panic, frustration)....support is the absolute key if you ask me.

[1998]

I know my anxiety and visual problems aren't going anywhere so I don't focus on them. As long as I'm pushing to be a better person, live a healthy lifestyle and exercise. Hppd doesn't bother me much anymore!

I have to mention since I've been cutting my klonopin, I finally feel like I'm waking up again

[dukkha]

I met a girl from the old forum....she lives in a town about 120 miles from me and we meet now and again for Indian food....sitting across from someone who is experiencing some degree of the symptoms you are is incredible....I would be into a skype session too and I suggested it on the old forum...I even suggest people start mentioning their neck of the woods (Northern Arizona here) so that personal meetings can be arranged....it is amazing helpful to see other people and get a picture of their life....something about attaching a real human face to this is very beneficial....I am scared shitless much of the time too...I believe the visual problems are not going anywhere so I focus on my response to them (fear, panic, frustration)....support is the absolute key if you ask me.

thats a really cool story! thanks for sharing. it would be cool if we could have an annonymous map with people's location on it with a contact option. anybody know about the technology we would need to set something like this up?

D