Generalized Dystonia - Dopa Responsive Dystonia (DRD)
Dystonia. The third most common neuromuscular disorder behind Essential Tremor and Parkinson's Disease. Approximately 500,000 people in the United States suffer from this debilitating and complex disorder. Much more to come...the above link is to our nonprofit organization website dedicated to dystonia awareness. Neuronauts Now was founded in January 2014 and "launched" June 28th, 2014, with the website and 4 social media sites showing the "real" side of dystonia in our every day lives. It is written simply, provides information for people who have just been diagnosed and to share with family and friends. There are 18 pages of clinical information, special awareness events, Neuronauts in the Press and links to blogs, supporters and more!
Neuronautsis a closed and confidential support group on Facebook for all people living with ALL neuromuscular disorders and was created in December, 2012. We now have over 1600 members but it still feels like a close family! Neuronauts led us to bring our private side to the public so we could reach as many people as possible and many found us through a CNN article in 2013, which was our very first effort to bring much needed attention to the little known but not rare word...dystonia.
Many of our members have helped create this (also) ongoing site, the videos on our YouTube Channel and the many blogs and iReports (essays) which help others understand more about how this disorder affects us all. Neuronauts is open to anyone seeking daily support, a place to make friends, learn, laugh and just "be". There is a link to request to join Neuronauts on the website.
This WHOLE site is in progress...!
I write about my own dystonia on my blog and I will post pictures here showing the progression and changes I have gone through since December 2009, when my "switch" got flipped to ON.
It is a HUGE part of my life, but as I struggled to accept this chronic 'life", to not let it define me as a person, I also struggled to find the words I felt. They finally came to me, "I am MORE than dystonia!"
Still, IT ends up getting a whole page on my own website :) ...but JUST ONE!
EVERY SINGLE PAGE, all five, of this website are in progress (as I keep writing) because i don't want this to be as boring as it is right now.