Nolan’s Journey with Dystonia

Photography by Sandro Georgi Photography

Nolan is an incredible person and father who is living with dystonia. He hasn’t let the movement disorder hold him back from anything, even running a marathon. Recently, Patient Worthy had the fortunate opportunity to ask him some questions about his life with dystonia.  Below are his answers and some photos from that day.

Take a look at his inspiring outlook and infectious attitude! 

What is your message to someone else living with dystonia?

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writing became difficult with dystonia Sandro Georgi Photography
Don’t let Dystonia define who you are. Don’t let it control every single aspect of your life.

For myself, it is part of me. It is mine to do with as I please. I may not be in control of how and when Dystonia wants to rock my world. I can only control how I react to it.

That being said, I know that there are varying degrees of dystonia. There are those who are confined to beds, and there are others who look perfectly healthy until they perform a task that triggers their dystonia. But we can control how we live with our dystonia. I should collaborate with other dystonia patients and write a book called “Living the Dystonic Life”

How has living with dystonia influenced your life?

Early on in the process of diagnosis, it ruled my life. At the time, there I was, with this inexplicable issue. My first neurologist hadn’t a clue as to what was happening. At the time, it was confined to my right hand and arm. They performed MRI’s, nerve conduction studies and electromyography tests, the latter of which was excruciating. And during that time, I had become perilously obsessed in attempting to self-diagnose. The internet quickly became a very close friend. I poured over hundreds of websites, trying to find an answer. I went further down the rabbit hole reading about diseases like Huntington’s, Parkinson’s, ALS, Wilson’s and MS.

Since then, I’ve found a neurological team here in Virginia Beach, that was able to make a diagnosis with a high level of certainty. My outlook changed once I had an answer to all of my questions. From that moment on, I was able to start moving forward, creating a life as a person with dystonia.

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Nolan with pictures of his daughters Sandro Georgi Photography

I stopped asking “Why me?” And I began asking “How do I change my life to include Dystonia?”

How have you overcome the challenges of living with dystonia?

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Sandro Georgi Photography

My dystonia eventually started to affect my left hand, and eventually both feet and lower legs. As strange as this may sound, my time living with dystonia has helped me learn to love running again. At first, it was a means of attempting to control something that was uncontrollable.

My time running seemed to be a time in my day where my dystonia didn’t exist. As my fitness and mileage increased, running became meditative and therapeutic. And this “therapy” following my diagnosis also carried over to other aspects of my life.

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Sandro Georgi Photography

Probably my biggest challenge has been that I’ve recently become a single father to two amazing girls, which in itself is very stressful. Running with dystonia has helped me through some of the toughest moments as a single father.

The dystonia and running communities that I have found through social media, like Instagram and Twitter, help me to find solace in the challenges brought on by dystonia. To hear others’ daily challenges helps me to not feel so alone. I was never one for community or gathering, at least I wasn’t until I started experiencing the effects of dystonia. Running and sharing my dystonia experiences through Instagram and Twitter have been an exercise in self-realization.

I am my dystonia. I am a runner. And the reality is that without those two, I would not be a humble, compassionate, and understanding father. My kids deserve the best. I can only do that if I own the life I’ve been given.


Share Nolan’s dystonia (and running) perspective today!

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