My Journey with Dystonia: Strength, Support, and Never Giving Up

My name is Timothy Gillette Insogna, and I was diagnosed with dystonia at the age of 12. At the time, I didn’t fully understand what that would mean for my life—but I knew it would be a challenge.

There was a period when I relied on a wheelchair, and later a walker. Those were not easy years. But today, at 43 years old, I stand and walk with AFOs on both legs—and I don’t take a single step for granted.

One of the people who changed my life was my middle school gym teacher. Every day in gym class, he believed in me when I didn’t always believe in myself. On sunny days, we would walk together around the track. On rainy days, we would walk in the school hallways. Step by step, day by day, he helped me realize that I was stronger than I thought.

Then one day, something incredible happened.

I came home from school and said, “Dad, look what I can do.” I got out of my wheelchair and walked across the kitchen floor. It was the first time I saw my father crying with pure joy. That moment is something I will never forget.

My journey hasn’t been mine alone. I have been surrounded by an amazing support system. My parents have always been there for me, encouraging me every step of the way. My sister is the kindest person I know—I truly have the world’s best sister. I’m also proud to have been the best man at her wedding and even prouder to now be an uncle—not once, but twice.

Throughout my life, I’ve been fortunate to have incredible doctors and therapists who have helped guide me, including Dr. Susan Bressman, Dr. Seth Pullman, and my physical therapist Bill Chapin who has since become a friend. I’ve also undergone two major surgeries on my left foot and left arm, each one a step forward in my journey.

But what defines me is not dystonia.

Dystonia does not stop me from living my life. It does not stop me from doing what I love, spending time with family, traveling, and capturing moments through photography, especially food photography, which brings me a lot of joy.

My story is one of perseverance, but more importantly, it is one of hope. It’s about the power of support, the importance of believing in yourself, and the impact that just one person, like a gym teacher, can have on your life.

If there’s one message I want to share, it’s this:

No matter what challenges you face, don’t let them define you. Keep moving forward, one step at a time.

Because sometimes, the smallest steps lead to the biggest victories.