First off, I am honored that you want to hear my story. Some of the things in my past bring back bad memories, but I am willing to share them in the hopes that it can help someone else facing a tough time. I was diagnosed with multiple sclerosis (MS) in March 1992. I was engaged to be married later that year, and I was very scared and angry at the curve ball that had hit my future. I’m happy to say, though, that my fiancé was there by my side through every test, doctor visit, etc.
Early MS Symptoms
The first symptom that led to my diagnosis was optic neuritis, which caused me to lose the majority of my vision in one eye. After several weeks, and a lot of time off work, my vision slowly began improving. Later that year, as my wedding was nearing, I had a terrible episode of vertigo, which was coupled with Bell’s palsy — not exactly the kinds of things a bride-to-be wants to be dealing with. Thankfully, all of my early symptoms began to subside, and I was in remission by the time my wedding day arrived in October. After those two early exacerbations, my MS seemed to stay in check. My first neurologist insisted that I rest a lot and told me that a great deal of physical activity could bring the onset of more symptoms. I wasn’t okay with that, and I decided I would challenge his thinking and get a gym membership. I had done a lot of reading about MS, and since muscle spasticity is very common with the disease, it seemed to make sense that exercise would be the lesser of the two evils. Knowing that getting overheated was also bad, I exercised in moderation, but I began to feel stronger and my confidence grew.
Finding My Way Into Strength Sports
During the month of prepping for my first bodybuilding competition, I also committed to competing in a powerlifting meet, which was three weeks before the bodybuilding show! I did well at the meet, then hit the stage for the Upper Ohio Valley Bodybuilding, Figure, and Fitness Championships, where I placed third in the Women’s Open Bodybuilding. Over the next few years, I prepped and competed in more bodybuilding shows, with a few powerlifting meets thrown in for good measure.
Dealing With Relapses and Medication Side Effects
In 2004, I was attending community college and was heading toward graduation when I started having spasms in my leg. I was afraid it was another flare-up of my MS, and I decided to see my doctor. That visit led to my starting the drug Avonex (interferon beta-1a), but the side effects of the drug were horrible and made for a terrible time at the gym. After a month or so on this therapy, I began to question what the future of my bodybuilding and powerlifting would be. I was afraid I would have to step away from the sports I loved, yet I continued on the therapy for the next three years, convinced that it would keep me well and, I hoped, prevent the MS from progressing. But finally I couldn’t deal with it any longer, and I stopped the therapy a few months before my annual checkup. My doctor wasn’t pleased with my decision and stressed that I needed to be on a drug therapy to keep my MS in check. But I was able to avoid another prescription for a few years. In 2011, I had a setback due to stress, which caused me to have a flare-up of my MS. I was then prescribed Copaxone (glatiramer). While I wasn’t having the horrible flu-like symptoms and depression that accompanied Avonex, this new drug had its own set of side effects, so I stopped taking it within about eight months. When talk of oral medications for MS began to buzz around, I decided I would do my best to wait until they hit the market before taking any more drugs for MS. As I began to recover from the relapse in 2011, I got together with my trainer, Andy Bartolovich. I was still having balance and coordination issues, but he worked very hard with me to get me back into competing. With his help and patience, I went on to compete in four bodybuilding shows that year! The next few years were challenging with family issues and a vertigo setback, but I fought through it all, and I hit the gym again. One major positive during this time was that oral drug therapies began to be available, and my doctor was quick to get me started on Tecfidera (dimethyl fumarate). To this day, I am still using Tecfidera and am managing the few side effects that accompany it very well.
Celebrating a Long Marriage and Fitness Career
Now, here we are in 2017. As I look back and reflect on the past 14 years of my life of bodybuilding with MS, I am convinced that all of my training, bodybuilding, and powerlifting helped to keep my MS in check. I am sure that the disease would have taken me down a very different and more challenging path had I not engaged in this level of fitness. I believe that I would not be as healthy as I am today. This year I will celebrate 25 years of marriage to my wonderful husband, Kurt, pictured above. Without him by my side to help me through all of the challenges I had to face, I would never have been able to continue in the sports that I so dearly love. I hope that my story can help others who may feel that MS will inevitably slow them down. I never slowed down, but I had many curves in my path. I should say that I have been extremely fortunate in having a relatively low number of exacerbations from my MS. I hope that trend continues as I stay committed to the sports I love. David Lyons’s new book, Everyday Health & Fitness with Multiple Sclerosis, coauthored with neurologist Jacob Sloane, MD, PhD, offers nutrition advice, a mental approach to fitness, and discussion of the mind-body connection. Photos courtesy of Kim Reed
