Right now; this is just a lil about DYT1+ Generalized Dystonia(GD). My current goal is make this resource one that's compiled by all of us who actually live with Generalized Dystonia(GD) while keeping most information publicly accessible! My main focus &purpose for this section is to create what something more like: . This is taking me much longer than I ever imagined. Why, simply put, Generalized Dystonia(GD) has effected me, my life, &my body far more than I ever feared or could have imagined! But soon(my soon no any one else's soon *plt*[I have a deeply satirical/sarcastic/dark sence of humor]*plt*). Until than, aside from my lil page, far more information can be found on our forums’ public section(s).
Welcome to ♥Dystonia-DREAMS.Org♥where we‘re Dedicated to Resources, Encouragement, Acceptance, Management, & Support exclusively for everyone coping with any type of Generalized Dystonia.
I've been working on ♥Dystonia-DREAMS.Org♥' for a long time,
Our current support network started out as temporary, &still is. It‘s just become a lot more tempory than I ever could have planed for. Because, as I wrote above, "Generalized Dystonia(GD) has effected me, my life, &my body far more than I ever feared or could have imagined!" but first some basic info. ♥Dystonia-DREAMS.Org♥ focuses on our Dedication to Reaching-out, Encouraging, Accepting, Motivating, & Supporting each and everyone here! now the real news.
These forums are only the beginning. I'm getting ready to start using ♥Dystonia-DREAMS.Org♥ as I've been designing &planning to. Its actually going to be powered by my own open source close-knit social&support network. Its going to be so much more than a forum, or even a social network. Its really something I can‘t explain; it has to be seen, at least, &even better - used - to be understood.
I've renamed my software from it’s original working title ofDREAMS to it’s new &decidedly permanent, title of realFriends. I’ve chosen this title in dedication to two incredibly special people in my life. Both of whom I met here @♥Dystonia-DREAMS.Org♥. Both of whom over ♥Dystonia-DREAMS.Org♥'s first year &a half have truly become the closest experience of family I’ve ever been blessed to have. They are two of my dearest friends and constant sources of inspiration &motivation.
*ubér huge hugs*
I've also turned into realFriends' entire discussion system into it's own pseudo-instant messenger by making posting, messages, and etc more live & active, easier to reply to, more instant, and just way more fun. i really can't explain it you'll all just have to wait and see it... i truly can't wait for everyone to use it.
I've also designed a contact sheet for anyone who need someone to talk, or is open to having someone contact them in their time of need. What I'm hoping to use this for is to create a true online support group.
I've also added a blog/diary section where everyone can keep an online diary of coping with their GD. Any, or all, of anyone's diary may be public, so we can share our unique and and yet similar stories'. These diary writings, or entire diary, may also be saved as private so we can have a place to let our heart cry in privacy.
Lastly I've added what will become a detailed research and article section full of research I've found before, and especially dealing with cases and treatment of people with GD. This collection isn't huge, but there is a lot more information than I'd realized was out there. okay, yeah its our own lil custom wiki *wink*. so it‘ll grow as we all continue to live(on&off line) with ♥Dystonia-DREAMS.Org♥.
Now I'd love to hear any suggestions or wish lists that anyone has. Be as creative or as simple as you want. I'm looking forward to hearing everyone's ideas & wishes. Thanks in advance for everyone's help in making ♥Dystonia-DREAMS.Org♥ into what we all need.
