Running for Teaneck High School and being part of that team was so important to me. I built life-long friends and it made me the person I am today. Running also made me feel very connected to my father because I was also able to share my running journey with him.

When I arrived at college I never thought I was good enough to make the college team. Freshman year, I went to practice but never showed up on the day of tryouts. By sophomore year, I decided to give it another try and I made the team! I was definitely in the back of the pack but I was running and that is all that mattered to me. This served as a reminder to never underestimate what is possible!

After leaving for college, I visited him whenever I had the chance. He received Deep Brain Stimulation (electrical stimulation to treat movement disorders) when I was in my senior year of college. His health continued to decline and he eventually needed a cane, a walker, and then a wheelchair. I still remember getting ready to run the Philadelphia Marathon and visiting him in the hospital in the days leading up to the race.

His last few years were spent living at a rehabilitation care facility. When I visited, I would tell him about my running and the next marathon I had coming up. He would tell me stories of people in the care facility telling him their kids won the Boston Marathon (even if they hadn’t). I think that was the good and bad part, my dad never lost his mental capacity.

Marathon

My dad was a marathon runner. He would tell me all about the great runners of his time. They were all marathon runners. I wanted to be part of that world. My first marathon was the NYC Marathon in 2002 with my brother. My whole family was there, and it was one of the most amazing experiences of my life. I had never even competed in a half before running my first marathon. I still remember being completely haggard from the run but knowing I wanted to do it again and again!

I ran the NYC Marathon four times, the Chicago Marathon once, the Big Sur Marathon once, the Philadelphia Marathon once, and the Boston Marathon twice.

During my 10th marathon, the 3rd time running the Boston Marathon (2011 Boston Marathon), I had a difficult run. At mile 18 I ended up heading into the medic tent. They took my blood and did some tests. After about an hour of being in the tent, they said I could finish the marathon. By then, I was over it and thought for sure I would be back. I decided to take a DNF that day.  As for my last Boston Marathon, I wish I had finished the race. I always thought I would be back and finally get my jacket… I bought a jacket for my dad the second Boston Marathon I did, it still sits in the closet.

About two weeks after the 3rd Boston Marathon, I was running with a friend and took a fall. I hit my head in the process. When I got up, I continued running…

About a week after my fall, I noticed my left leg was dragging. My pace went from sub eight minute miles to 11 minute miles. I tore a hole in my left shoe (the toe box). I had only put about 20 miles on them prior to tearing the hole. It felt like I was dragging my leg behind me.

I went to physical therapy thinking it was just my hip or my knee… But it was getting worse. At one point, I remember trying to walk from my car to the supermarket and not being able to walk properly.

At physical therapy, my trainer would have me run forwards, backwards and sideways on the treadmill. Every time I ran forward, I would struggle and end up in tears.

I went to every orthopaedist and neurologist who would listen to me. I was told everything from “wrap your knee” to “you have MS” and “I just needed to see a psychologist”. I tried every type or treatment I could find. I went to a NYU doctor who stuck every one of my muscles with a large needle. I had to walk with a cane from his office after treatments. Unfortunately, those needle treatments did not work. With physical therapy my walking got better but my running was impossible. After 2 years of no diagnosis and an MRI of every part of my body including my brain, I went back to JFK hospital in NJ. They thought perhaps I had early onset Parkinson’s or Dyskinesia similar to my dad. They gave me medicine including Sinemet to try… My dad had taken this drug and the side effects sometimes seemed worse than the disease. It was then I started researching Runners Dyskinesia and I came across Runner’s Dystonia. When I showed this to the neurologist, he agreed this is what I had. After 2 years, I finally had a diagnosis.

Diagnosis

Runner’s Dystonia

Runner’s dystonia, or focal dystonia, is a neurological condition that affects a muscle or group of muscles in a specific part of the body during specific activities, causing involuntary muscular contractions and abnormal postures. They say with focal dystonia it happens to a task that you have done over and over again seamlessly. I used to run forward a lot (the most ever was 80 miles in one week). I did not always run backwards… I still don’t think my brain has figured out what I am doing yet. Maybe one day it will impact my backwards running but for now, it does not.

1 Step Forward, 1 Mile Backwards

When I was in physical therapy, I ran backwards on the treadmill and never had any issues. I moved out to California thinking I would swim, surf and bike. I started doing just these activities but missed running and the feeling I received after running. I decided to start running backwards on the beach. I would run a mile and fall a lot! A friend convinced me to join a running club. I was told by a member of the running club, my running backwards would just confuse them. I was also told by the YMCA that I couldn’t run backwards on the treadmill. I finally found a running club that would allow me to run with them. I fell in love with running all over again!

When I was in New Jersey, I met a runner in California who also had focal dystonia. She held a backwards race, so when I got a diagnosis I reached out to her. We eventually met in person and she shared with me all the WR of backwards runners. I thought to myself if there was one for the Half Marathon. After more and more training runs I thought it was realistic that I could beat it.

As for the team, the people I draw from… I think mostly I draw from my dad. I don’t go for a run without thinking of him. I also draw from my family. My brother, sister and mom are three of the strongest people I know. And now I draw from my husband. He has run several half marathons with me and continues to put up with my early Friday bedtime and long Saturday morning runs. I also have my New Jersey running friends who helped me videotape my dystonia symptoms and even did the Empire State building run with me as running upstairs was easier than running on flat road. I also have my California running tribe. My 6@6 girls who sometimes run at 6am.

Running for Change

Running forward was more about just running and pushing my own limits, however I have always been a believer in advocacy for others. I have often participated in the Michael J Fox and Parkinson’s runs. In work, I have tried to choose companies that have a greater cause. As an engineer, that is not always easy, but I have had the privilege to work for MTF (Musculoskeletal Transplant Foundation), the world’s largest tissue bank working to honor the donor gift and Illumina, unlocking the human genome.

Now, after meeting Gene Gurkoff I have found that I can make change and become an advocate for others with Charity Miles by running, walking, swimming and biking for a charity that speaks to me.

Growing up with a dad with Parkinson’s disease, two people’s names would always come up in our household. Michael J Fox and Mahammad Ali. When my father passed away, we donated his brain to Columbia Presbyterian and we asked for donations to be made to the Michael J Fox foundation in my father’s name. I reached out to MJF foundation when I first got diagnosed with dystonia but at the time their primary focus was on Parkinsons. In 2017, my cousin approached me about running the NYC Marathon. Through him and the NYC marathon, I met Gene Gurkoff whose grandfather had Parkinson’s disease. He offered to be my spotter as we ran for 6 hours in the drizzling rain through the streets of NYC for Team Fox. Running the NYC marathon backwards was the one thing in my life where I truly thought it might be impossible. Proving once again that anything is possible.

As I ran more and more, I realized that my story was not just my story anymore. It helped others as well. And though that was not my intention, I am beyond happy that through sharing my story I can help others. I now use Charity Miles to choose a charity to run for every day. I like mixing it up as I think they are all important charities. And every single one has an impact on someone’s life. I hope I can continue to help others.

Final Questions

Let’s rewind to the time of your first onset of symptoms, what would you tell your younger self?

Everything happens for a reason! My forward running kept me with my dad for as long as he was alive. My backwards running brought me to CA where I met a whole new set of friends, my husband, and have a career I love. And most importantly, I learned there is more to running than just running.

How can people follow your journey or get behind the incredible causes you’ve advocating for?

Log onto charity miles and find a charity that speaks to you. Through charity miles your friends and family can sponsor you on your walks and runs for as little as 5 cents a mile. I believe it’s important that we support our own causes and the causes of others. I am always looking for another cause to support.

I hope to run the NYC marathon backwards again and when I do it will be for Team Fox!

Lastly, I am on Instagram (rennur316)-Runner spelled backwards and 316 was my fastest full marathon time forward.

Bonus Content

You can listen to Justine’s interview with Charity Miles the morning of the NYC Marathon below