Friday, September 12, 2014
I've been doing some training with another photographer, we were doing test shots and he took this one of me, not posed....us just hanging out playing with light. When I saw this shot, it struck me as such a perfect example of my sensory tricks for Dystonia. I do things like this all the time with my hands to keep my head in a normal position. I'm so thankful that at least I do have these "tricks". They don't work for some and I can't imagine if I didn't have them. My head would be stuck turned to the left.
We are trying to make September "officially" Dystonia awareness month. Please consider signing this petition to help us! Just 90 seconds of your time to help over 500,000 people in the U.S. Thank you so much!! You can click HERE for the petition.
You can also read more about Dystonia and my story HERE.
Again, thank you and have an awesome weekend!
Monday, September 8, 2014
Friday, September 5, 2014
My cup runneth over this week. We are trying to make September "officially" Dystonia awareness month. I've never seen my community come together like this working towards one goal. All the foundations, all of us that suffer from Dystonia and our families working together making wonderful things happen! Pictured above is Noel Valero with the American Dystonia Society, Inc., he is standing in front of one of the windows at Rockefeller Center. How cool is that?! The Bachmann-Strauss Dystonia & Parkinson Foundation, Inc. made that happen. You can read the story HERE.
Did you know even though Dystonia is not a well known disorder, it affects more people than Lou Gehrig’s Disease (ALS), Muscular Dystrophy, and Huntington’s Disease combined? It affects 500,000 people in the US and that number is based on people that are diagnosed properly. Due to the fact that it's not well known, many go undiagnosed for years.
Seeing that sign on the Rockefeller Center and all the awareness this week, has brought happy tears to my eyes. We have to create awareness in order to get funding for research to find a cure. We have taken huge steps this week.
So here it is....the HUGE FAVOR....no money, no ice water. :-) (Which was AWESOME for ALS)
Just this....will you sign this petition? All you have to do is add your email, quick and simple. In order for us to make September official, we need 100,000 signatures. I would so appreciate your help! Click HERE for the link to the petition.
To learn more about Dystonia and to read my story, you can click HERE.
Thank you so, so much and have an awesome weekend!!
Wednesday, September 3, 2014
The real voyage of discovery consists not in seeking new landscapes but in having new eyes.
- Marcel Proust
With groggy eyes, I rolled over in bed to face the window and saw the sky glowing. In one quick motion, I was out of bed, phone in hand on the front step. Fingers crossed the neighbors weren't awake to see me half dressed with my bed head hair. ;-) Literally the whole sky looked like this with every color of the rainbow depending on the direction you looked.
As I stood there, I thought of the quote above. It made me think about how when we are stuck, we think we have to make big changes or quit something and start something else. When the truth is sometimes we just need fresh eyes or to look at it from a new angle. Just like in Dead Poets Society when John Keating (The amazing & missed Robin Williams) stands on top of the desk. I thought this was perfect for us insecure writers today. If you are stuck, not sure of your direction.....try changing your view, changing your thoughts, put your character in a new place, a new time, a new situation.
Of course this applies to everything in life....
Have an awesome day and enjoy your view!