Thursday, July 23, 2009


First I have to blog about yesterday. Yesterday was Dystonia Twitter Awareness Day - so if you were on Twitter you were asked to help spread the word about Dystonia which is a rare disorder that not many are aware of. I wasn't sure what to say. Then I saw all these 'tweets' (Twitter talk) coming in from people w/ Dystonia and if you typed in #dystonia in the search box, you'd see all kinds of responses. I was literally blown away! I knew people had it but I never knew how many. I have had this 31 years, so it is what it is. I just try to do my best and keep plugging along. I even changed my staus on Facebook to say if anyone is on Twitter and has questions about Dystonia to please Twitter and join in conversation. A couple people posted comments on my facebook wall asking what is Dystonia, one said she never knew they had a name for my condition. Then i got a message in my facebook inbox from someone asking how i know about Dystonia - she asked if I had it. Then said she too had it!!! So since I know this person we have a lot to talk about!! Our Dystonia's are different. It's so nice to connect w/ people who actually know something of what you are going through. Of course every person is different as is every person w/ Dystonia. I never heard much of anything about this rare disorder, thanks to Twitter we can spread the word!!

Today at gym I did a couple weight machines then started on my walking. My first lap I did 12 laps in 18 min - with some running inbetween. Then I got my wonderful stretch from Charlotte (thanks Charlotte) - very relaxing then I was ready to go at it again and this time I did TWELVE more in 17 40 min! So I did TWO miles again!!! woo-hoo!! I did pretty well for not feeling 100%!

So thats my news for the week. Enjoy your weekend. I appreciate all my new followers - some of you I met on Twitter. Thanks everyone for your support


  1. You've lived with dystonia for 31 years!?! Talk about an unwanted guest overstaying his welcome!

    I have had it close to 20 years now (tough to say really because I probably had it since birth and being nervous brought it out it middle and high school and constant by my second year in college). So at least I got to go through a somewhat normal HS career.

    Sorry, I missed the Dystonia Twitter yesterday. I was very busy and since I am barely computer literate enough to blog (I am not even on facebook yet, if you can believe that!). Soon hopefully.

  2. Joey I am so proud of you!!!! I was so happy to finally see you again in the gym walking and RUNNING! :) Keep up the great work. I know you can accomplish anything you set your mind to!