Wow what a difference a machine makes...
So now that I am officially a robot (or cyborg...) my days are spent finding the new patterns.
Before I had certain triggers to set off Dystonia Storms and I had the side effects of certain medications figured out and so on.
Getting the pump has sort of jumbled things up but in a good way.

I no longer have the worst pain I could ever imagine almost constantly from my muscles pulling and moving all the time. The relief from the constant pain has allowed me to relax, sleep, and enjoy life more.
Of course the Baclofen Pump was just a treatment for a symptom (severe muscle spasms) not a cure for Dystonia- so there are still things to deal with and manage.

I am starting physical and occupational therapy soon, 3 times a week, to work on muscle strength and retraining. I also hope to get the grip back in my right hand because I sure do drop alot of things. :) I have a new neurologist who will be working with me on now what remains- my Essential Tremors and memory loss. If I can get these two things under control AND try to keep the medication list as low as possible (because of side effects and cost) then I think I will be able to manage what life throws at me!

To just mention the I Wanna Be A Robot Benefit that happened in August,2009 it was amazing.
Not only did people bid on all of the art and enjoy 18 bands but I wasd able to go for about an hour and spoke to everyone about losing independence when I was 30. And what Dystonia (which comes right after Parkinson's and Tremor) is all about.

Wish you knew the backstory?
It is now published @
http://neighborsgo.com/index.php?page_id=1000&site_page_id=5&post_id=17914
Please add us to www.myspace.com/wannabearobot
and thank you to everyone who has been helping in so many ways!

dystonia is taking over my body but with ever move it makes i become a stronger advocate for a cure!

Bookmark this site!- Soon I will be working hard on a book with several stories about Dystonia which will not only help people recently diagnosed but also people trying to understand the disorder or chronic illness.