Sunday, March 7, 2010


Hi all,

BEAT DYSTONIA is hosting the next advocacy call Sunday, March 14th at 11:00 a.m. PST, 12 p.m. Mtn. time, 1 p.m. CST and 2 p.m. East Coast time.

Please RSVP to

Wednesday, March 3, 2010

Out and About

Here I am out and about with my Beat Dystonia
t-shirt. I have been feeling better lately, physically and emotionally. This journey with dystonia is always teaching me important things when I pay attention.

I look at this picture of me "out and about" and think my outings maybe should be more exciting than the grocery store, but Jessica and I had a lot of laughs while there. She is always fun to shop with but she is very busy and it doesn't happen often so we try to make it fun. She is good at laughing with me during the rediculousness of me juggling cane, motorized carts, and long breaks on the first bench I can find.

After reading Rogers Hartmann's blog she had mentioned lying down anywhere, anytime, on any floor if she needs to and I remembered that and came very close to lying down in the dogfood isle but Jessica talked me into going for the bench a few yards away. And we laughed, seriously, on the way there because it is just that goofy.

Anyway, there is an amazing story on about a little girl with dystonia that Beat Dystonia/Rogers Hartmann spent time with and helping her get through a tough appointment. It is a nice story of advocacy.

I am still working on fundraising. My family and I are excited to be focusing on something so positive because there are so many people who are still undiagnosed and suffereing needlessly, and as always, a cure and better treatment would be something to celebrate and I want to have that party.

I hope anyone reading this is feeling great and having a wonderful day!
Much love,