Wednesday, April 25, 2012

Here I Go

I'm not even quite sure where to start with this. There are so many thoughts that run through my head when I hear the word Dystonia...fear...loneliness...confusion...anger...hope. I am coming up on my 4th year suffering from Cervical Dystonia and sharing my experiences is something I have thought about doing for years but never seem to have had the courage to do so. I do not know if anyone is going to read this; but even if just 1 person does, doesn't that count for something? 
I heard yesterday that more people have Dystonia than people with Huntington's Disease and MS, combined. Yet why is it that Dystonia is a word most people have not even heard of? I felt sick to my stomach after hearing this. 
According to my neurologist, I have about 10 more years left before I am immune to the treatment I am currently receiving (I'll get to that later). And then what? The answer is, I honestly don't know. I can't accept that. I refuse to let this disorder take over my life more than it has, and if it is going to take over my life, I will decide how, and I have decided to start by writing-educating those who want to be educated, share my stories and fears and struggles and the ignorance of so many people towards my condition. I am hoping this will lead to advocacy, not just local advocacy but advocacy in the entire Dystonia community. I am hoping advocacy will lead to awareness, awareness to funding for research, research to answers, and ultimately-answers that will give us a cure. 

What is Dystonia?
Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are 'competing' for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.

When I was 17, I was diagnosed with Cervical Dystonia, affecting the regions in my neck, shoulders, and head. I was driving to school one morning and my head felt...weird. Something felt off. And from there it took off. By the end of the week the spasms and contorting of my head were so bad I told my parents straight up-something is not right. I could feel it in my brain. I knew it was bad-I just didn't know how bad and I had no idea I was about to fight the biggest battle of my life, but I will get to that later. For now, my goal is to try to start talking about and not hiding it like something to be ashamed of. I am one of the youngsters out there with Dystonia and I feel obligated to do something, even if the first step is blogging about it. Maybe someone will read it, maybe no one will. The point is, if I don't do something, if I don't say something, then I am accepting my diagnosis and assuming someone else will advocate and speak for me, and like my dad says, when you assume, you make an ass out of you and me. No more assuming, no more pretending I live a normal 21 year-old's life. This is real. This is hard. But I have hope. 

William E. Young wrote, "Just because God works remarkable good out of unspeakable tragedies doesn't mean He orchestrated the tragedy."

I started this journey four years ago and I am curious to find out where it will take me. I have lost a lot but I have also gained a lot along the way. I have met some remarkable people and have received nothing but love and support from so many people.

My first attempt at being a voice for those who are unable to speak for themselves due to the crippling nature of this disorder. How scary. And exciting. It is going to be the biggest uphill battle of my life-and I can't wait.

Here I go.

"Your journey has molded you for the greater good. It was exactly what it needed to be. Don't think you've lost time. It took each and every situation you have encountered to bring you to the now, and now is right on time." -Asha Tyson


  1. Starting is always the hardest part. You have a lot of family and friends that love you. If you inspire one person then this blog would have done its job. Im along for the journey.


  2. I come from a different perspective than those people that have Dystonia. Nicole is my daughter. I have been there from the beginning - emergency room visits, staying up all night trying to comfort her, being her voice with doctors when she was unable to, trying to ease the emotional upheaval of this disease but most of all being the constant support in her life as she navigates through this. I encourage you all to learn more about Dystonia. Not only is it the people inflicted with this disorder that can make a difference, it is the people that support them. All it takes is one person. I'm so incredibly proud of you Nicole. This took so much courage to tell your story but you have no idea how many lives you will change because of this. And as always.... I am here.


  3. Nicole, ich finde Deinen Blog richtig gut.
    Ich bin genauso ein Mensch wie Du und habe meine Geschichte über mein Leben mit Dystonie in der Vereinszeitung der Deutschen Dystonie Gesellschaft veröffentlicht ( 6 Berichte - also eine Serie). Viele Dystonie-Betroffene haben dann gesagt, Du hast meine Dystonie beschrieben.
    Also Nicole gib nicht auf, ich tue es auch nicht und engagiere mich als Leiter einer Selbsthilfegruppe Rhein-Main im Großraum Frankfurt/Deutschland.
    Du kennst mich aus einer Facebook-Gruppe.


    Nicole, I would publish with pleasure in your Blog what, but it does not go. if you put the following text in your Blog, please:

    Nicole, I find your Blog really good.
    Me am just a person like you and have published my history about my life with dystonia in the association newspaper of the German dystonia society (6 reports - a series). Then a lot of Dystonia-affected person has said, you have described my dystonia.
    So Nicole do not surrender, I also do not do it and am involved as a leader of a self-help group the Rhine Main in the metropolitan area Frankfurt / Germany.
    You know me from a Facebook group.