What were some of your first symptoms of amyotrophic lateral sclerosis (ALS)?
About a year before I was diagnosed, I was at my strongest physically that I'd ever been. I was training for a Half Ironman triathlon. Then I started tripping over my toes and my voice started changing and I was garbling my words. People had trouble understanding me. After that, it felt like everything—eating, speaking, walking—slowed way down. I am thankful that I can still drive, but I get around using a walker.
Had you always been a runner?
I wasn't always athletic, but during one particularly snowy winter when I was living in Washington, DC, I got restless and wanted to move my body. I started running on a treadmill. When the weather improved, I ran outside around the National Mall. I was amazed that I could explore a city by running. I began running and biking everywhere. That's how I got into triathlons and marathons. After I was diagnosed with ALS, I wanted to do one last triathlon, but I had trouble balancing on the bike, so I switched to a recumbent trike. I came in last, but lots of people stayed to cheer me as I crossed the finish line. That's when I realized I could inspire people with my story.
How did you decide to do marathons to bring attention to ALS?
After that triathlon, I challenged my friends to do races to raise money for research. And once I had my trike, I kept doing them as well. Five years later, I decided to set the craziest goal I could think of: a marathon in every state. I'm up to 44 states now, and I'm hoping to finish my last one on Memorial Day 2022 in Alaska.
What are you hoping to accomplish with this goal?
Aside from raising funds and awareness, I want to help people who are struggling. I want them to appreciate what they have and what their bodies can do. I use social media, blogging (teamdrea.org), and now a documentary to chronicle my journey. I feel like I have been given the gift of time, which most people with ALS don't get. I see it as my duty and honor to raise money to find a cure.
Can you explain the logistics involved in participating in a marathon?
It takes me about four hours to finish, depending on how hilly the course is. My husband typically helps me into the trike and then checks on me halfway. He always cheers for me at the finish line. I wear an exercise water pouch to stay hydrated and eat regularly throughout the course. When I'm not doing a marathon, I'm training. I swim twice a week, do Pilates, and ride the trike.
Have you set other goals for the future?
I hope to get back into triathlons. I'm working on my upper-body strength so I can use a handcycle. Until then, I continue to be grateful that I've lived seven years since my diagnosis. I treat every day as a gift. I just want to celebrate living.
