My name is Jennifer Middlebrook. I am a 48-year-old triathlete who rides a Quintana Roo PRsix tri bike, and I was diagnosed with focal dystonia in my legs and feet when I was in the 7th grade. Symptoms of focal dystonia include painful clawing of the toes, tightening and seizing of the muscles in the feet & lower leg and a force that restricts movement in the legs. My toes began clawing, or curling under, to the point where I could hardly walk and the muscles in my calves, ankles and feet caused me severe pain. I was not able to move normally due to the tightening and cramping that I faced in the arches of my feet and the lack of control I had over my legs.
I was misdiagnosed by orthopedic doctors over and over—my mom probably took me to every doctor in a 200-mile radius of Orlando, FL. I was set to have a surgery that would have deformed me for the rest of my life—my femur bones would have been cut in half, my legs twisted and sewn back in. But by the Grace of God, a child's neurologist stopped by the door of my hospital room to chat with his buddy, my orthopedic doctor.
The neurologist asked if he could examine me and watch me walk. He told my mom that what he thought I had was something very uncommon, especially in girls, as it was more commonly seen in young, toddler-aged boys. The neurologist gave me a few medications to try, and one of them ended up being the ticket. With this medication, I do not have any symptoms if I go about a normal day. Being a triathlete, however, is a different story.
On a normal day, I take one pill of a medication, also used for Parkinson’s disease, and can go a full day without any symptoms. Past the 24-hour mark, the symptoms kick back in and the toe-clawing and cramping pain begin to take over. Without this medication, though, I wouldn’t be able to function normally. It is truly my miracle drug, and I will always appreciate the time the neurologist took to see me before going into a life-changing surgery.
I decided in September of 2013 that I wanted to lose weight and get healthy. I told my husband that I wanted to start the Couch to 5K running program, and he agreed to do it with me. I completed the program in December of 2013 and ran my first 5K called Santa’s Foot Pursuit. With more training and 5K races under my belt, I decided to train for my first triathlon. I had to be careful about when I trained based on when I took my medicine, and I quickly learned that getting enough sleep was crucial to the recovery I needed in my feet and legs.
I started my triathlon journey by completing 2 super sprints—1/8 mile swim, 8 mile bike, 2 mile run—in the summer of 2014. After I completed my first tri, I was hooked. I came across an advertisement for a big race, for me, called the Rocketman. The race was being held on Kennedy Space Center property in Titusville, the city I grew up and attended high school in. My husband thought I was crazy when I told him I was taking this race on. At the time, I did not yet have my QR tri bike and had only completed about 20 miles on the bike. The swim was easy, the bike was hard and the 4 mile run was brutal. Between my dystonia and the mid-90 degree heat, I suffered—but I finished, and I was thrilled!
After the Rocketman, I knew that I could do the 4 summer sprint distance triathlons the next summer; but first, I had my first half marathon to tackle. I signed up for the Holiday Half in St. Pete, FL. Due to my fear that my legs would not be able to handle the distance, I did a training run in Celebration, FL where I completed 13.1 miles prior to the race. When the time came for my husband and I to line up at the start line for my first official half marathon, I began crying happy tears. I never believed that I would be running a half marathon.
I finished the race and have since completed 13 half marathons. Some of these races were very difficult because of my dystonia. Until I learned how to correctly regulate my meds, I would start feeling symptoms around mile 9 or 10 and would have to finish the last 5K of the race in terrible pain. For one of the races, I forgot to take my medicine and did not have any in the car or my tri bag. The dystonia symptoms set in around mile 4—I truly thought about quitting, but I have never, and still do not, have a DNF. Nevertheless, I finished the race before driving 2 hours home to get my medicine.
I have been doing sprint triathlons since the end of 2014, and in 2015, I got my QR PRsix! I wanted a QR ever since seeing other people riding them when I first started racing, and I absolutely love my bike. In January 2017, after getting my bike, I signed up for what would be my pinnacle race—The Augusta IRONMAN 70.3. This race is the longest that I could ever hope for my legs to be able to finish.
As I started to add distance past the sprint distances, I quickly realized that I was going to have to do something about my dystonia symptoms. I began taking a second pill during my training in order to make sure that the medicine did not run out of my system as I pushed my legs and feet to their limit. As part of my training for the 70.3, I did my first, and only so far, Olympic distance triathlon in Sebring, FL in June of 2017.
My 70.3 was in September of 2017. I was hoping to finish the race in less time than is given to complete it—8.5 hours. The swim was awesome, and I completed it in less time than the allocated time. I made all of the bike cutoffs, did great with my nutrition and took my extra pill. My legs ended up getting very weak and I failed to get enough salt in, but I felt good on my PRsix. Upon completing the bike, my muscles began cramping and my toes began clawing. I took another pill and some much needed salt, and after about 30 minutes of walking and sitting along the run path, I was able to get up and interval the remaining 12 miles of the race.
I met up with a wonderful lady who needed someone to run with around mile 6. She and I ran it out and finished the race together with an hour to spare. It was an incredible and exciting day! I couldn’t have done it without my medicine or my QR.