Dystonia Bulletin Board

The first thing that piqued my interest in your post was that you live in South Africa. My best friend is South African also although her family moved to the United States many years ago.

That aside, I wanted to welcome you on the journey and that is how I have to look at it. I was diagnosed in August 2007 and have since lost my job and I am currently fighting to get disability. I struggle with some daily actions, although my symptoms are not always unbearable. Thank God.

I encourage you, like so many already have, to not discount options. I currently take Depakote and Provigil. The Provigil is for my Narcolepsy but the 2 disorders combined are difficult on my body. Therefore, I must take the two meds to keep my symptoms at bay.

I too am just now beginning to 'deal' with the stares or questions. Initially when I first was released from the hospital those around me, I believe, thought this would go away. Now that it hasn't they, as well as myself, are forced to face the reality that I physically at times do not resemble the Trudy prior to August 2007. I again, remind myself that it is part of the journey -- good and bad.

I wish you the best and keep coming back to this site. I just found it myself and it has provided much comfort knowing there are others like me a keystroke away.