Diagnosis: Neuromyelitis Optica Spectrum Disorder
Montana, United States
January 18, 2009 is a day that I will never forget. Prior to this day I was a wife, a violist in the symphony, a K-12 music teacher, private strings instructor, and a composer. I ran marathons and loved to swim. Then, my life changed forever. I began having numbness and tingling in my hands and feet in the Fall of 2008. I had muscle spasms and even started having seizures. My doctor could not figure out what was going on. My symptoms escalated on January 18, 2009. While helping in a children’s outreach ministry that afternoon, I suddenly became paralyzed from the chest down.
From January 2009 to July 2013, the only firm diagnosis I had was transverse myelitis. I had seven major attacks, lost my hair twice, learned how to walk three times, went blind in my left eye, and have been on a ventilator twice. Then, in June 2013, after splitting with my husband and going home to Montana for the summer, I was finally diagnosed with Neuromyelitis Optica.
During the first 4 ½ years after diagnosis, I had gained 200 pounds. I began avoiding the mirror, shutting myself away from everyone, and finally gave up teaching in 2011. The most difficult part about having NMO is the way it contributed to the suffering in my marriage. My husband couldn’t “fix” me and I couldn’t deal with reality. I slept all the time. I never exercised. I was depressed. I hit bottom in July 2013. I realized if I didn’t change, I was going to die. So, I took control of the downward spiral my life had become and began exercising, eating healthier, juicing, and socializing again. The only person who could help me was ME.
I have slowly lost weight, gained my self-confidence back, and I’m even teaching music again. In February 2014, I slipped on ice, shattering my T2 through T4 vertebrae and ended up having a massive NMO attack which permanently damaged my spinal cord. I now use a wheelchair all the time.
I have hope that I will see great strides in the medical world for TM and NMO. In the meantime, I will teach my students, hand cycle all over Montana thanks to the help of the Kelly Brush Foundation who provided me with a grant to cover some of the cost, advocate for accessibility in my community, and continue to push myself in physical therapy. My dogs keep me company and I am truly grateful for the friends I’ve met, the information and research being funded by groups like SRNA and the Guthy-Jackson Foundation. For the first time in eight long years, I am hopeful about the future.
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