Monday, September 14, 2015

Dystonia Going Mainstream

Skip the content, get to the point? Sign the petition here:

It’s September again, so that means it is time to sign to Dystonia petition. The ultimate goal being- more awareness of the disorder so that we can eventually find a cure.  When I think back on my personal experience with dystonia, it makes me smile just a bit to see just how far we’ve come in under 10 years. 

When I was first ‘diagnosed’ my doctor told me to Google the disorder. I went home and did just that. What I found terrified me so much, that I decided at that exact moment, that I did not have dystonia.

I stumbled on the movie Twisted, and more specifically the story of Pat Brogan. As I looked down at my hand, the same one I had learned to live with not being able to use, I shook my head and thought: “meh, it’s not that bad.” 

So I turned down the Botox therapy, and continued to type or talk what I needed, and I truly thought that would be the end of it. 

Little did I know that five years later I would once again be diagnosed with dystonia, but this time it was not something I could ignore. As I sought out information, this time it led me to the Dystonia Medical Research Foundation. I used their sites to join patient groups, so that I could figure out what was going on with me. 

Eventually I met some pretty amazing people, including the same Pat Brogan that freaked me out 5 years prior.  As we carpooled together to DC to push for pro-dystonia legislation, I contemplated just how fast things had changed. 

In DC, my daughter and I spoke with my representatives, so that they could have a clear face attached to the bills they were signing into law. My daughter, 9 years old at the time, spoke eloquently on how dystonia affected her life, especially when I was physically unable to do things with her. 
My daughter made such an impression on the staff of DMRF that she was invited back to attend their annual families with dystonia conference. While there she met children with dystonia, learned some coping techniques, and had a little fun as well. 

I, on the other hand, was able to meet another internet hero I stumbled across online – Jason Dunn, dystonia advocate.  I can’t remember how we exactly met, but I believe he found me on Facebook via mutual online patient group friends. Jason had a dramatic homemade video on YouTube, that displayed his condition clearly- it was one that nearly every dystonia patient had seen. 

Jason was just as amazing in real life, and our short time together was captured in a short clip on National Geographic.. but here's the entire episode =) 

These are just a few of the amazing people that are continuing to push for dystonia awareness. There are many others including Noel Valero, who also shared his story online, held a dystonia sign on the Today show, and actively advocates online; Dawn Brinkley, former Miss North Carolina and Rogers Hartman, who appeared on Oprah.  They have made huge contributions, but they are just a few – we can do so much more as a combined force. 

That is why I encourage you to sign this petition- because the patients and their families should not be the only ones that have heard of dystonia. You should sign this petition to support the brave efforts of the patient advocates who constantly seek ways to bring attention via the media. You should sign the petition so that medical professionals feel obligated to increase their understanding.  You should sign this petition to benefit humanity. 

If that last reason sounds dramatic to you, it’s probably because you haven’t met 100s of people who suffer, mostly because of the lack of medical knowledge/access to care. We can beat this America, but we have to show the world that we care.

Image Credit: Jason Dunn and the secret service agent that let him keep this awesome picture.
We all can't shake the President's hand, but we can all get his attention. 
Sign the petition here:

Thursday, November 20, 2014

Why I Became an Advocate of Awareness

I frequently wonder why I spend time talking about dystonia. It no longer runs my life. I am not still searching for answers. I have, for the most part accepted my diagnosis or lack of one. … but I still feel the need to talk about dystonia - rather than any other condition. Why is that?

Dystonia wasn’t the only ‘mystery diagnosis’ I’ve dealt with in my life. To be honest, it seems like there was always something going on with me. I spent nearly half of my high school life in physical therapy recovering from one thing or another. Yet, I was still an active, healthy person- or at least I thought I was. 

I appear so healthy at times; that it’s hard for people that know me to believe there is anything wrong with me. Every since my hand started spasm-ing as a pre-teen, I’ve been told it was all in my head

I suppose I took exception to that. Mostly, because it was precisely that mindset that landed me on crutches. It was another condition, one which my family doctor prescribed a “Tylenol and some ice” as a treatment for, that led to years of debilitation. 

At 14 years old, I lost the full use of my feet- for almost a year. All due to improper treatment of a repetitive sports injury. Three years of physical therapy and lots of rest, and I gained the majority of function in my feet- but as a Freshman in high school I was convinced I would never dance at my Prom.
I did dance, but I was scarred emotionally and physically. 

Ten years later, after enjoying a relatively normal life, I was once again not able to use my feet, but for a different reason. My right foot turned inward and refused to let me step down.  Once again, the doctors had no answers. Once again, they told me it was in my head. Then one doctor paid attention – and called it dystonia. 

As I learned more about dystonia,  I learned that my experience was not unique. I found camaraderie in the millions of sufferers who struggled with their muscles yet had no answers. I found others who had been told ‘ice and Tylenol’ or were told to take some muscle relaxants and go away.  I met doctors who realized that stress was not the cure-all diagnosis for conditions they didn’t understand. 

To me, dystonia awareness is a movement of people who demand accountability from the medical profession. These are the patients who have been repeatedly silenced, yet cannot hide, because their symptoms are so visible.  An advocate of dystonia awareness is someone who believes there should be answers- even when the solution is not easy.  A dystonia advocate believes that people should not only be entitled to life, they should be entitled to a good quality of life. 

No one deserves to live in pain, disability or embarrassment just because people refuse to search for answers.  We can’t ignore the problem or pretend it doesn’t exist. It’s time we focus on understanding the many conditions that attack humanity and do everything we can to fight back. 

That is what I stand for.

Monday, September 1, 2014

A Quick Request

It’s September- and we are talking about Dystonia. 

If you’ve landed here you probably are wondering what it is. You won’t find that here because I’m not going to tell you. You can however, click any of the links, watch any of the videos or google it. 

And when you’re done, visit and show your support for having dystonia awareness month officially recognized.

Everyone deserves the ability to move correctly.. let’s keep fighting for a cure!