Sunday, May 5, 2013

1 week down, many to go

Well, I've been here a week now and have realized even more how much I HATE Dystonia! This is not one of those moments where I say it and someone tells me, "It can't be that bad that you HATE it." I mean - i REALLY HATE IT! My dad, who is a smart, capable, and willing man, has been temporarily defeated by Dystonia.

NOW, I say temporary, because we are fighting this war and are CONFIDENT that we will defeat it! No, we will probably not cure Dystonia in my dad's lifetime, but we will surely be able to subdue the effects of it as much as possible. Dad's storm looks like it has passed and now the task to build his strength up so that he can regain the mobility he had 3 weeks ago has begun. A physical therapist came in Friday to help dad strengthen his upper body as well as begin stretching his legs and back and will continue to come out twice a week until we, hopefully, don't need her! My mom has finally gotten some sleep and is aiming to go back to work soon. We are trying to get their 'normal' life back, and claim victory in this small battle that is a bigger part of the Dystonia war!

Another thing that has happened this week is that along with the help of a beautiful girl in England, Rebecca Moller, we created a "Go Blue" event on Facebook. We have had pictures start rolling in of people that have gone blue in their own way and encourage you to do the same!

This is Dystonia Awareness Week and yet our advocacy should not stop here. Last week many of you were in DC pressing the importance of advocacy and funding on Capital Hill, and yet our advocacy should not stop there, either. Dystonia is the 3rd most common neurological disorder (in the USA) and if you talk around enough, you will run into people that absolutely know what it is. BUT at the same time, there are many people that don't know what it is and need the knowledge so that they can, too, become and advocate and one day help someone else!

Go Blue, advocate, write letters to your representatives, share your story, tell someone else, or anything you can - but most of all - SPREAD DYSTONIA AWARENESS!!!

1 comment:

  1. I think it is really very difficult to live with dystonia!