A Dystonia Q & A

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September was dystonia awareness month [but that doesn’t mean we can’t keep promoting awareness]! Dystonia is a rare neurological movement disorder that can cause involuntary muscle spasms and contractions, tremors, and uncontrollable movements. Dystonia can set up camp in any part of your body. My type, cervical dystonia, loves my neck and shoulders where it holds frequent parties. And as much as I try, my dystonia is a shadow that follows me around everywhere. It is a part of me, and fast as I try to hobble away, it’s something I can never escape because there is no cure for dystonia.

As a daily conqueror and advocate for dystonia, I’ve been busy blogging and writing. I stumbled across a survey from last year asking people living with dystonia to reflect upon their disorder to help patients and family members who were recently diagnosed. I would like to share three of the questions.

What do you wish you were told about dystonia upon the diagnosis?

A. I am a control freak who enjoys a mundane life full of consistent routines. That’s the worst possible fit for someone with dystonia! What I wanted was my neurologist to hand me a binder which included: a complete personalized list of my every symptom, the exact moment of onset, the period of duration, and the severity of each symptom. That’s not too much to ask, right?

Seriously, I wasn’t prepared for the pain and dizziness. I wasn’t prepared for the constant fatigue. I wasn’t prepared for the permanent lifestyle change my entire family would undergo. Most of all, I wasn’t prepared for the battle my brain and my body would fight every day. Looking back, it wasn’t a binder I needed. What I needed was for someone else living with dystonia to slip me two notes. One that said:

“You are stronger than you could ever imagine. You CAN do this.”

And the other would have said,

“You will have bad days but you will have plenty of good days too. Never let your bad days overshadow your good days.”

What helps you cope?

A. Three things: a positive mindset, laughing at myself, and the occasional venting session. My mindset is most important. Sure, I do everything my neurologist tells me to do. I take all four of my meds, get 2-6 painful daily massages (thank you amazingly well-trained husband), and try not to do too much. But no matter what, I live in pain. And my body may continue to decline. So I’ve learned to take life 1 minute at a time. Not one week, not one day, not even one hour. Minute by minute. Right at this moment, the pain I am in, the dizziness I am experiencing, it may be my present, but it will pass. My pain right now does not dictate my day.

Laughter is the best medicine. I know it’s cliché, but sometimes for my sanity, all I can do is laugh. I knock things over, drop things, spill my drinks, walk into walls, and I say the wrong words all the time. And sometimes, it’s just plain funny. Laughing helps gets me through the day.

Finally, I cry. And yell. And sometimes I throw things too. (But only on my worst days.) On days when I am sure I can’t take it anymore, I allow myself to get mad and I allow myself to mourn my old life. Then I pray. God is always with me. I find my husband who holds me why I cry and reminds me we can do this. God put us together for a reason. And then I move forward.

What should someone understand about you?

A. I don’t want pity. I’m not looking for sympathy. My life is what it is and I don’t regret it, or take it for granted. My life is beautiful and I am the person I am today because of my dystonia.


amber PW contributorAbout the Author:

I am a wife, mother, a full-time teacher, an advocate, and a fighter who shares a body with cervical dystonia, vestibular neuritis, celiac disease and chronic depression. It’s kind of a lot to fit in one body. I am a habitual late night reader, Netflix binger, and morning grump (who is pretty sure that 5am is a mythical time). And I am living the most insane, agonizing, amazing life with blessing too numerous to count. Up until about a year ago, I wasn’t a writer. For a long time, I ignored God’s call for me to write thinking, “What makes me so special?” When I finally sat down to write, I wrote my first piece in one sitting and it was immediately published. So, then I started listening and haven’t stopped writing since. Little by little my attitude towards writing is starting to blossom. You can follow my winding journey here.


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