After This Cyclist Was Diagnosed With a Rare Disease, She Started a Bike Race to Inspire Others

Photo credit: Courtesy Tamesia Hart

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Name: Timesia Hart
Age: 58
Hometown: Port Arthur, Texas
Time Cycling: 10 years
Occupation: Disabled Veteran and CEO/Founder of Living to Win Foundation
Reason for cycling: After surviving neuromyelitis optica (an autoimmune disease and central nervous system disorder that affects eye nerves and the spinal cord) and completing grueling physical, occupational, and speech therapy, I realized I would have to live with disabilities and had a decision to make. I could sit around feeling sorry for myself, or take the life God gave me and positively make an impact on society. Thankfully, cycling was what challenged me and helped me to help others by defying the odds.

Before my neuromyelitis optica (NMO) diagnosis, I prided myself for being physically fit. I could run, walk, hike—I did what I wanted to do, albeit with some pain from back injuries while in the Army. I cooked well, ate well, and used food as the fuel for my well maintained body. But my NMO came out of nowhere. I literally went to bed and the next day felt weakness in my lower extremities, and by the end of the day I had been transported to a huge neurological center because I was paralyzed from my shoulders to my toes.

In 2009, I was misdiagnosed with multiple sclerosis (MS), and the treatment wreaked havoc on my body. My body was toxic by the time the right diagnosis of NMO was discovered—the neurologist began every known treatment, but nothing worked for me. Doctors said the sooner I accepted that I’d be in a remote controlled wheel chair, the better off I’d be, and that I should spend whatever time I had left with family—that was the best they could offer me. Never did I accept that, and it’s very much why I’m alive and well today.

As a last resort, I was accepted into a clinical trial at Northwestern Memorial Hospital for a hematopoietic clinical trial stem cell transplant (HCST), in which they used my bone marrow to replace the bad cells causing the NMO neurological attacks with new cells. I received the transplant in 2013, and I was fortunate to regain some mobility.

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After going through extensive physical, occupational, and speech therapy, I said I wasn’t strong enough to go to the gym on my own, but my therapist recommended I start cycling. I started on a stationary bike in 2014, and by 2015 I was still barely able to stay on the bike. Therapy was difficult in the beginning, and I wasn’t able to do much. But my attitude made a big difference, along with my determination.

As my body began responding, therapy became much easier. I gradually gained enough strength and confidence to start to ride safely outside. I also went through the Livestrong program—a 12-week exercise plan to get survivors back on their feet—twice, and then mentored two cycles afterward. Now I can sit on a bike, balance, and ride up to 25 miles. I enjoy riding even more now, and it is my new form of physical fitness. I ran track in college and ran while in the military, but I’ll unlikely run again. So riding is the next best thing for me.

In 2017, I recorded some music and released an EP called Endure, and with the revenue generated from it, I started the Living to Win foundation, where we support NMO patients and their families. We motivate them to fight and survive. I started an annual bike race, and we will have our 4th annual Biking to Win event in August where we bike 20 miles around Bentonville, Arkansas, where I now live. It is a family event, and parents ride with children and decorate their bikes. We put on a biking parade, and all the proceeds go towards supporting others with this debilitating disease. My goal is to have a state to state Biking to Win event.

To date, my longest ride has been 25 miles. I don’t race, mountain bike, or any of the crazy stuff, but my average of 80+ miles a week is pretty impressive. The community I live in in Northwest Arkansas has many trails, and my favorite ride is from Bella Vista to Springdale by way of the Greenway.

Riding is so freeing to me. I’m not supposed to be able to walk, let alone ride. I pray that by riding, others—no matter what their issues are—will be inspired to keep pushing and do something. I always say I don’t have a disability, but rather the ability to do things differently.

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