Lois talks about life with MS and how you can help.
That’s the best way I can think of to describe having MS. I’m not just talking about the physical side of the disease. I’m talking about the mental side, too.
Hello, my name is Lois Miller. I first had symptoms when I was 45 and was officially diagnosed with MS about a year later.
I often experience the sensation of my body going numb, from head to toe. But I’m numb every time that I stop and think: I have MS.
Until I started showing symptoms I hadn’t thought about MS in 40 years. When I was in Grade 3, I remember my class and school selling candles to raise money for a national MS campaign. I remember hearing about MS – things like you wouldn’t feel it if you burned your hand or that you wouldn’t be able to walk. I remember being terrified. I had nightmares thinking about what a terrible disease MS is.
I forgot about it. I lived my life. I moved to Saskatoon and built a successful career beginning with the Barn Playhouse. While there I decided to pursue an undergrad degree and then got my MBA. I’m now a partner in a successful environmental consulting company, Trace Associates.
I became the typical busy business person. I wore the power suits. I worked 60 to 70 hours every week,
continuing to build my career. In late 2015, I had my first symptom – that dreaded feeling of numbness. I thought it was just a pinched nerve, so I went to the chiropractor but nothing changed.
About a month later, I had more numbness. In early 2016 – I’ll never forget the date because it was the weekend of the La Loche shootings – I went completely numb down my front and back on the left side. I thought I was having a heart attack so we rushed from the farm where we lived (just outside of Saskatoon) to RUH.
I wasn’t seen until 2:30 a.m. but the EKGs were clear so I was sent home early in the morning. That next evening I went numb in two-inch increments all the way down one leg and up the other.
I thought, “is this MS?” I hadn’t thought about MS in more than 40 years but that was the first thing that came to mind.
My family doctor referred me for an MRI but the wait would be six to eight months so I opted to pay for a private MRI in Edmonton. Things went quickly from there. After the MRI I was able to see a neurologist within a week.
It was confirmed that I had MS. It was the beginning of a challenging time. I learned quickly about what works and what doesn’t work in our system for a person with MS.
It’s not that any one person or the system is bad… it’s because of the disease. We know more about what we don’t know than we do know. We don’t understand fully how to treat it or stop it from getting worse.
I was dealing with the sheer shock of having MS and other challenges. I gave blood in what seemed like gallons, I encountered the expense of pharmaceuticals, being diagnosed later in life (age 47), the bureaucracy of being diagnosed, the paperwork, dealing with the disease itself and its varying, inconsistent symptoms.
Needless to say, having MS is very stressful. Any day could be a bad day. A day where I’d go numb or even not be able to walk.
But, then I met some wonderful people and learned about the work they’re doing. Meeting people who care was like someone was able to cut through my numbness. Cut through it with hope.
I was referred to Dr. Levin, (MS Clinical Research Chair), who sees patients one day a week as part of his research and clinical work. Through Dr. Levin I met Dr. Valerie Verge, Director of the Cameco MS Neuroscience Research Center (CMSNRC).
Meeting them and discovering what they do, I realized how important research is. I realized how lucky we are to have the Center. The people at the MS Center dedicate their lives to figuring out MS. They’re so passionate about what they do. We’re fortunate to have that here.
I asked Dr. Levin and Dr. Verge what I could do to help. They asked me to tell my story. To talk to people.
That’s why I wrote this. I want to help you and others understand the urgency behind the research. I want you to know why it’s so important we support the great doctors and medical researchers at the Cameco MS Neuroscience Research Center who are doing such crucial work.
We’ve come a long way in the past 40, 20 and 10 years but we still have miles to go. The only way to get there is to support research and researchers. True and lasting change only comes through the long tale of time. It’s the same thing for research. It will take significant resources to figure this out.
Please support the Center. Please support the important research.
Donate here today and you can ensure that this research will continue.