Mary lives in the rural mountain community of Buena Vista, Colorado, where movement, nature, and resilience have become deeply woven into her life with MS. Through years of adapting, learning, and staying connected to her community, Mary has developed a thoughtful and practical perspective on movement, physical therapy, assistive devices, and the importance of continuing to engage fully in life even when that looks different from day to day. In this conversation with InforMS, she shares honest reflections, humor, and encouragement for others navigating life with MS.
Mary and her grandson Finn.
To start, could you share a little about yourself and your experience living with MS?
Mary: MS has really been part of my life for a long time. My oldest brother was diagnosed with MS back in 1989, and watching his journey really impacted me. In a way, it lit a fire under me. And all things considered, he did pretty great for a long time.
After my own diagnosis in 2002, having MS changed my perspective in some positive ways too. We live in the mountains, and it really got me moving more. My husband Gary and I raised our three kids here, but it was truly my good friends who pushed me and the kids to get outside – going hiking, exploring, and time in nature. Those friends and the adventures we shared together brought so much joy. Some of our favorite memories came from exactly that. So while MS has certainly been difficult, it also encouraged me to value movement and appreciate life in a different way.
How has your relationship with movement evolved over the years?
Mary: It definitely changed our perspective on health and movement. Friends, physical therapists, wellness coaches, all of those people encouraged us to keep moving instead of just sitting around and resting.
Someone once told me, “Just don’t rust,” and that has always stayed with me.
We have an old car that sits around a lot, and the more it sits, the more rust it gets. That’s such a good visual for me. I don’t want to be rusty. Movement doesn’t have to look one specific way either. I do a variety of things like hiking, stretching, online movement classes, and seated exercises when needed. There are so many resources available now, even things you can do from home. The important thing is continuing to move in whatever way works for you.
What role has physical therapy played in your life with MS?
Mary: Physical therapy has been huge for me. It’s like having another person on your care team. It’s someone who gets to know you, understands MS, and helps you adapt to whatever is going on at the moment. I’ve found that it’s especially helpful working with therapists who understand neurological issues and the brain-body connection. Sometimes it’s about retraining pathways or figuring out new ways to do things when something changes. It’s also the accountability and encouragement that matters for me. Even if you’re not seeing someone every week, just knowing there’s somebody there helping guide you makes a big difference.
Mary and her dog Rubble.
You mentioned using a variety of assistive devices. How do you view those tools?
Mary: They provide freedom for me. I use different devices depending on the day and what I need to do. The biggest thing I’ve learned is to use what works for you.
Use the forearm crutches. Use the stick your kid carved for you. Use whatever you’ll actually use and feel comfortable with. Don’t be intimidated by assistive devices.
Another thing that really helped me was practicing with devices before I absolutely needed them. Practice when you’re having a good day so that when you’re struggling, you already know how to use them confidently. That practice builds peace of mind. And come to think of it, I think it’s important not to let your devices “rust” either. If you have them, practice using them, so they are your trusted tools. For a long time, I had a fear of getting stuck somewhere without the energy or mobility to safely get home, so building that confidence with my assistive devices was so important for me.
What are some of the biggest challenges you’ve faced along the way?
Mary: One of the biggest challenges for me has been learning self-regulation, particularly when to stop before I completely run out of energy. We live in the mountains, and you never want to go below a quarter tank of gas out there. MS feels similar to me. If you push too far, you can end up stranded.
So I’ve had to learn that sometimes it’s okay to stop early or ask for help. Maybe it’s asking someone to help you get to the car or recognizing that your body needs rest before things get worse. That took time to learn.
You also talked about how important community connection has been. Can you share more about that?
Mary: At first, MS felt very isolating. Participating in Movement Matters classes through the Rocky Mountain MS Center was life-changing because suddenly I was around people who understood. You realize, “Hey, I know these people. I’m not alone.”
There’s something really powerful about moving alongside other people living with MS. My brother and his wife also understood the importance of social connection. They used to host accessible potluck gatherings at their home for other couples affected by MS. That kind of connection really matters. I think we all need more of that.
InforMS: What advice would you give to someone living with MS who feels unsure where to begin with movement?
Mary: Just try one thing every day. You don’t have to run a marathon. Maybe it’s walking to your front door. Maybe it’s stepping outside for a few minutes. Maybe it’s doing a seated class online. Just start somewhere. If you start the ball rolling, hopefully it keeps going. And if something doesn’t work, try something else. MS is so individual, we’re each like unique snowflakes. What works for one person may not work for another, and that’s okay. Most importantly: just don’t rust.
