ELLY GRIMM
• Leader & Times
Multiple sclerosis (MS) is a chronic autoimmune disease of the central nervous system where the body's immune system mistakenly attacks the protective myelin sheath around nerve fibers, causing communication disruptions between the brain and body. This leads to a wide range of symptoms, including vision problems, fatigue, muscle weakness, and cognitive difficulties.
The condition affects an estimated 2.8 to 2.9 million people worldwide, and statistics show in the United States, nearly 1 million people are living with MS. Statistics also show MS is more common in women, with a ratio of roughly two to three times more women affected than men.
Runner Betsy Mueller, who received her own diagnosis in 2021, is looking to help raise awareness of the condition by being the first person diagnosed with MS to run across the U.S., which included a stop in Liberal at the end of April. As Mueller tells it, getting her diagnosis was a big shock.
“I'd had some numbing on the side of my face, and it was slowly spreading to the top of my head and other areas of my body. I initially thought I had a sinus infection or something, so I went to the ER to get tests done, and the doctors determined I was not battling a sinus infection, and then they said they were going to do an MRI,” Mueller said. “That's when they found the lesions in my brain and told me I had multiple sclerosis. I was really lucky though because the doctor on call there in the ER was also a neurologist, so he knew what to look for. But I was really surprised because I was doing a lot of preventative health maintenance and taking care of myself because I wanted to avoid taking a bunch of pills for the rest of my life, so the diagnosis was a real shock to me and my family. I went through a bit of depression and looking back at those few months of my life, it was worse than I initially remembered, and I ultimately ended up getting out of my funk, getting five plasma exchanges and getting a routine going to help manage everything.”
Ultimately, Mueller said, she was led back to running.
“I've actually always enjoyed running, but the most I'd ever run before was a marathon, and that was only one time. Then, my husband and I, with our youngest daughter, moved to Flagstaff, Ariz., and then I got sparked to run more,” Mueller said. “But I also thought if I kept running in races, I'd have to push myself to constantly get faster and run a new personal best every time when I really just wanted to run more for fun. So I got the idea to maybe run a marathon or two and thought if I could do that, maybe I could do some research and find out whether or not I'd be the first person with multiple sclerosis to run across the U.S. and bring some awareness to the condition. When we moved to Flagstaff, I knew I didn't want to live with any regrets, so when we got here ... I really enjoyed watching and hearing stories of people who had run across the U.S. or traveled through in some form, so the idea was sparked, and I found a running coach to help prepare me for what I wanted to do. I was initially somewhat hesitant because I didn't know if there would be any complications or anything like that, but I ultimately thought 'What do I have to lose?' because I didn't want my diagnosis to control me. The idea had taken hold and I spent the necessary time making plans. I also want to maybe inspire people who think 'Oh I can't do X' or similar thoughts and help them realize they absolutely CAN do whatever it is they're wanting to do. I also want to bring more awareness to multiple sclerosis and help educate people more about this condition because there are a lot of misconceptions about people who have received that diagnosis. I don't know how much time I actually have with my diagnosis, but I didn't want to just avoid life.”
Mueller added preparing for her run took a lot of work beforehand.
“I found a running coach, and I ran six days a week, and toward the end of my training, I'd gotten to a point where I was running multiple hours at a time,” Mueller said. “Then as far as the logistics of everything, I'm really grateful to my husband for taking that on and mapping everything out and taking care of some of those details. We also started a non-profit organization we want to use to help others with multiple sclerosis after I'm done with my run. There are some great organizations that help support multiple sclerosis patients, but we wanted to do something that helped more with everyday life.”
So far, Mueller said, it has been a good journey.
“I've gone about 1,200 miles, and my total journey is going to be more than 3,000 miles. There are some days when I'll run more and some days when I'll run less just depending on how I feel and the circumstances like weather and all of that,” Mueller said. “I feel really good so far, I think it's pretty incredible how far I've made it so far because this is something I never thought I'd do. I've run a marathon and done some other races, but my main feeling after those was being tired and ready to rest afterward. But here I am running 30 miles a day or more, and I'm excited to do that every day. I've also had family helping me along the way, and I've already met so many amazing people who have been so friendly and welcoming. I was so excited to go through Liberal because I've always been a fan of 'The Wizard of Oz,' and I know there's a museum there with memorabilia and lots of other neat stuff related to those stories. I'm also really excited to tell my family in Wisconsin I was able to visit Liberal and see all of that. I'm really excited to be in the midwest region because I'm originally from Wisconsin, so I'm excited to travel through this region. I'm not actually going through Wisconsin since that would add 200 miles to my journey, but I've got some friends and family in this area and I'm excited to be in the area as a whole.”
Mueller also encouraged people to do more research about MS.
“There have been so many advances made in treatments and all of that – 40 or 50 years ago, that wasn't the case, so I'm very grateful there's been much more research done and more factual information about what multiple sclerosis actually is,” Mueller said. “And like I said earlier, there are a lot of misconceptions about people with multiple sclerosis, and I want to help maybe dispel some of those. Multiple sclerosis is not the death sentence it used to be, and part of the reason I was so scared after I was diagnosed was because I didn't have all the information and didn't know there were medications available to help slow the progression. There's just so much more information and research that's been done, and I would encourage anyone who's at all curious to do some of their own research. Something else that's helped me throughout my diagnosis was joining a support group, so if you're going through a hard time either due to a recent health diagnosis or something else, and if you feel like you need someone to talk to, I would highly recommend finding a support group, because it can really help,”
Overall, Mueller said, she is excited for the rest of her journey.
“I feel so humbled and privileged to be able to do this, and I can't wait to see how this run ultimately ends up, because I know there will be a lot more of the country to see and a lot more people to meet,” Mueller said.
