MS with Jennifer Cowan

In this episode of Day in the Life, host Taylor Dorward sits down with Jennifer Cowan to talk about living with relapsing-remitting multiple sclerosis (MS). Jennifer shares her long road to diagnosis, how movement and routines like walking, Pilates, swimming, and Bike MS support her well-being, and what it’s like navigating an often-invisible disability. Together, they discuss identity, accommodations, and the power of finding community—and Jennifer’s goal of building an active MS group for people who want to keep doing what they love.

Transcript

Jennifer (0:02)

Seeing other people like me—people who are committed to staying active—really matters. As we age, we all want to remain active, but especially when you’re aging with a disease that can be disabling. I also want younger people to know that this diagnosis does not automatically mean you’ll be disabled. I’m optimistic that science and research will keep advancing treatment options, and I hope to see a cure in my lifetime.

Taylor (0:32)

Hey everyone—welcome to another episode of Day in the Life. Today we’re talking about MS (multiple sclerosis). In this series, we highlight different disabilities to educate, raise awareness, and give people a platform to share their lived experience.

I’m your host, Taylor Dorward. I’m a blind white male with short brown hair, blue eyes, and a short brown beard. Today I’m wearing my Roseland glasses with a dark frame, plus a white T-shirt and an open blue-gray flannel.

Now I’ll turn it over to Jennifer to introduce herself.

Jennifer (2:09)

Thank you, Taylor. I’m happy to be here. My name is Jennifer Cowan. Would you like me to describe what I’m wearing today?

Taylor (2:18)

That’s totally up to you.

Jennifer (2:21)

Sure. I’m a white woman in my mid-50s. Today I’m wearing a black blouse. I don’t usually wear glasses, but I may put them on to read. I’m here to talk about multiple sclerosis and how it has affected me. I’m glad to have the opportunity to share.

Taylor (2:47)

I’m really glad you’re here—thank you. Descriptions are helpful for listeners, especially people who are visually impaired. Can you share a bit more about yourself and what life looks like day to day?

Jennifer (3:08)

I live in Denver, Colorado. I’m not a native, but I’ve been here for about 25 years, so it feels like home. I’m married and have one daughter—she’s in her second year of university out of state—so I’m officially an empty nester. We have two dogs who keep us busy.

I worked full-time—mostly remotely—in the technology industry for my entire career, and I stepped away from that about two years ago. I’m currently looking for my next role and staying busy with a part-time job. My husband and I also recently moved within Denver after living in the same home for 20 years.

I try to stay active. I walk a couple miles every day, and I participate in Bike MS every June, so I’m starting to train for that now. I enjoy traveling. I used to ski a lot and still ski when I can. Pilates is really important to me, and I try to swim about once a week.

Taylor (4:42)

Does staying active help you manage your MS?

Jennifer (4:51)

Yes—I believe it helps a lot. It’s hard to say for sure, but I think I had MS symptoms for about 20 years before I was diagnosed. I tried to manage those symptoms through physical therapy and by staying active—yoga, weightlifting, and especially walking. I walk a couple miles every day with my dogs.

I also bike—nothing too long-distance, but once the weather is nicer, I’ll bike to Pilates a few times a week. Overall, I think consistently staying active has made a real difference in where I am today.

Taylor (5:38)

I imagine it helps physically, but also mentally—exercise can be a big support for overall well-being. Has that been true for you?

Jennifer (5:54)

Absolutely. Yoga helps a lot in that way. I still do some at home, though not as much as when I regularly went to a studio. Swimming is also a great mental break—once you’re in the water, you’re focused on your breathing and your stroke. Exercise is important for so many reasons, and mental health is a big one.

Taylor (6:20)

Awesome. I’m curious—because I’m a huge dog person. I have a 145-pound Great Dane over there. What kind of dogs do you have?

Jennifer (6:32)

We have an almost 15-year-old Maltese, and she still walks about two miles a day. If it’s warm out, I have a little carrier that I put her in after about a mile. We also have a two-year-old Cavalier King Charles Spaniel, and he loves to play fetch—he’s obsessed with the ball.

Taylor (6:52)

Those are some great dogs.

Jennifer (6:55)

Yeah.

Taylor (6:56)

That’s awesome. You mentioned it took around 20 years to get to a diagnosis—what was that process like?

Jennifer (7:06)

I was actually talking with someone recently—the captain of my Bike MS team. He was diagnosed about 20 years ago, along with someone else we know in the community, and we were talking about how differently MS can look from person to person.

My first symptoms were in my left shoulder blade. I went to the chiropractor because I traveled for work and was early in my career—this was before rolling luggage was common—so I was always carrying a heavy backpack and suitcase. I attributed the tightness to that. That same tightness is still there; it has never fully gone away. When I say “20 years,” it’s probably closer to 30.

Fast forward to after my daughter was born—she’ll be 20 this summer, which doesn’t seem possible. Shortly after she was born, I had a horrible case of vertigo. I couldn’t get off my left side for a couple of days. I went to UCHealth (University of Colorado), where I’m treated now, and I saw a neurologist, but they couldn’t give me an answer. I had a toddler and was working full-time, so I was nervous it would happen again while driving or at some other bad time. That’s when I started paying more attention to what I ate and trying to get stronger, and I started going to yoga.

I went to yoga five to seven days a week for probably 15 years, working on stretching because I was always tight on my left side. The food piece was something I connected to the vertigo, too—I’d had two previous episodes, and they happened after we ate out. I would roll over in bed and get vertigo (benign paroxysmal positional vertigo, or BPPV). The third time, it lasted longer. Without any other clear reason, I associated it with food. I eventually received a celiac diagnosis and did some additional food-sensitivity testing. I cut those foods out and felt a lot better. For years, that’s how I tried to manage things: staying physically active and paying attention to what I was eating—and for the most part, I did pretty well.

Taylor (9:47)

Do you think early detection helps you get ahead of symptoms? I imagine that once things flare up and get worse, it can be hard to bring them back down.

Jennifer (10:09)

Absolutely. I was officially diagnosed about five and a half years ago. The medication I take doesn’t undo damage that’s already been done, but it’s intended to prevent future damage. I believe that’s what most MS medications do right now. There’s hope that we’ll find a cure for what causes MS, and also treatments that can actually repair or reverse some of the damage those lesions cause. For now, the goal is to halt progression and keep it from getting worse.

Taylor (10:46)

Yeah—here’s hoping. I’d love to be able to restore some of the connections in my brain and see more, too. I’m curious: I know there are a few different types of MS. What type do you have?

Jennifer (11:03)

I have relapsing-remitting MS (RRMS). I’ve also seen people refer to it as RMS. Primary progressive is a different type.

Taylor (11:18)

Got it—thanks for explaining. It sounds like you’re doing a lot to stay ahead of symptoms. You mentioned Pilates, yoga, biking, and walking. Do you have any other hobbies you enjoy?

Jennifer (11:49)

Travel is a big one for me, and I tend to stay busy. I have a good group of friends, and my family lives out of state—my daughter is out of state for college now—so I enjoy visiting people and exploring new places. I also like to read; these days I listen to more books than I read in print.

Taylor (12:25)

That’s cool. I’ve been wanting to get more into reading, too. For me it’s mostly audiobooks—I can read with my eyes, but it’s pretty laborious, so I usually don’t. It’s nice to have hobbies that keep you engaged and challenging yourself. I’m curious: how does MS relate to your identity as a person? Does it feel like a big part of who you are, or more like one piece?

Jennifer (13:05)

That’s a good question. I like to think it’s a small piece of who I am. When I was diagnosed, it was just before COVID. I’ve always worked remotely, and I had optic neuritis—that’s what led to my diagnosis—so I had to wear an eye patch for a couple of months until that resolved.

When people hear “MS,” they often assume you’re going to be disabled. Some people—even family who don’t see me regularly—assume that about me. But the people who know me here in Denver wouldn’t necessarily know I have MS. So it’s something I’ve thought about a lot, because the perception can be that you’ll end up in a wheelchair or need a walker. That could happen, but I don’t believe it will, especially with the medication I’m on and staying active. I don’t identify as “disabled,” but I know that perception exists.

Taylor (14:16)

That’s really interesting, and I can relate. Most people who are blind—around 95%—still have some vision. I’m lucky to have enough that I can get around fairly independently without a guide dog or a cane. It can be hard when people make assumptions. I don’t always bring up my blindness when I meet new people, because I don’t want preconceived notions to shape how they interact with me. I’m not ashamed of it—it’s part of who I am—but I don’t want it to define me. I want people to know me for me, and understand this is important, but it’s not all there is.

Jennifer (15:14)

Yeah, exactly.

Taylor (15:15)

Right—the perception can vary a lot. Some people want disability to be a big part of how they show up in the world, and some people prefer the opposite.

Jennifer (15:26)

Yeah. It can affect employment, and it can affect whether people ask you to do things. Going through all of this—especially when I had optic neuritis and couldn’t see well enough to drive—taught me a lot. I don’t necessarily view myself as having a disability, but I do have more empathy for what that experience can be like. You can still be a strong person and do a lot of things. I’ve also learned to get to know people more and not presume what they can and can’t do just because of a label.

Taylor (16:10)

Yeah, and that’s wonderful. That’s a big reason we’re doing this—to raise awareness and address common misconceptions. Like you said, having MS doesn’t automatically mean someone is destined for a wheelchair. You’re biking, swimming, doing Pilates, and staying active—someone who hasn’t known a person with MS might be surprised, and they may not feel comfortable asking those questions directly. So I love that advocacy piece.

You mentioned working in the tech industry—are you hoping to stay in tech?

Jennifer (17:14)

I’m not opposed to it. I worked for a global company for my entire career, and I loved it. I did have a short stint with a Denver-based company, and I’d love to work with more people locally now that I don’t need to be home for things like school pickups. My skills are pretty transferable, so I’m open to tech, but I’m also open to other industries.

Taylor (17:50)

You mentioned the eye issues, and I know MS can come with physical challenges, too. Have you ever had issues related to transportation or getting around?

Jennifer (18:04)

Not with transportation, no. It’s interesting—my husband and I like to go to concerts and sporting events. I can walk and I can drive, no problem, but I can’t stand in one spot for very long. My left foot gets tingly and can feel numb, and standing for more than about 20 minutes is really uncomfortable.

For years, I would shift my stance to take pressure off, and then I’d end up back at the chiropractor because I was standing crooked. My husband has encouraged me to pursue disability-related accommodations for venues, because it would help us enjoy things we love. I actually had foot surgery a couple years ago—unrelated to MS—and we used accessible seating then. It’s something I struggle with, because if you look at me, you wouldn’t necessarily think I have a disability, but I am affected by long periods of standing.

Taylor (19:35)

That’s something I don’t think gets talked about enough—how common invisible disabilities are. I struggle with it, too. Accommodations can be incredibly helpful, whether it’s having access to a seat or pre-boarding on a plane. Standing in a long line can be hard, and for me, navigating to my seat and getting settled can take a bit longer.

But it can also be hard to use accommodations because you worry about being judged or treated differently. I used to have a handicap placard for whoever was driving me, and since my disability is less visible, it made me feel uncomfortable—like people were thinking, “Why is he boarding first?” or “Why are they using that parking spot?” Every once in a while, you also run into someone who says something hurtful.

Jennifer (20:56)

Yeah. I haven’t experienced that much, because we only used accessible accommodations when I had foot surgery and was in a boot for a couple months. But it’s definitely a real issue with hidden disabilities. You can’t—and shouldn’t—ask someone to explain their disability, so it can be an interesting situation for people like us.

Taylor (21:26)

I have a friend in the UK who showed me something called a sunflower lanyard. Have you heard of those?

Jennifer (21:36)

I haven’t.

Taylor (21:37)

They’re often called sunflower lanyards. It’s a lanyard with sunflowers that signals someone may have a hidden disability and might need a little extra time, patience, or support. I’ve started wearing one when I’m flying, because it’s becoming more widely recognized—especially in airports—and it’s encouraged me to use the accommodations that really help me.

It can also help with interpersonal communication. For example, if someone approaches me and introduces themselves, it helps them understand I may need a little more context. I try to share it wherever I can, because it’s still not as well known here in the U.S.

Jennifer (22:43)

I hadn’t heard of that, but I like the idea. I even think about skiing—it’s expensive, so that’s already a big barrier, but I also struggle with turning left. I’m careful and cautious because I don’t want to fall. I had some bad falls before I was diagnosed. Wearing a sunflower lanyard or something like that could be a helpful indicator—like, if I had an accident, or if someone wondered why I’m being so slow and careful, there would be a reason.

Taylor (23:19)

Yeah—and once there’s more awareness, people don’t necessarily need to read anything. The lanyard is pretty eye-catching on purpose, so ideally people will start to recognize it the way they recognize a handicap placard and understand what it means. It’s definitely getting more popular.

Jennifer (23:56)

Yeah, it’s a good idea. I’ll look into it for sure.

Taylor (24:00)

At a recent conference, the person I was traveling with and I saw an ad for them on one of the airport banners. I was like, “Oh, that’s cool.” At the conference, another company was actually giving them out—one version for people who use it themselves, and another with inverse colors for people who want to show support.

Jennifer (24:32)

Okay.

Taylor (24:32)

It was really cool to see that in the space I work in. I’m also in tech, and accessibility can still feel like a fairly unknown concept in a lot of places—so seeing it show up in the real world like that was encouraging.

Jennifer (24:51)

Yeah, definitely.

Taylor (24:53)

On the topic of accessibility, are there any barriers you run into day to day—besides things like concerts and events?

Jennifer (25:06)

Like I said, the biggest issue for me is standing in one spot for any length of time. I can walk, I can bike—I can do lots of things. I’m just a little slower on my left side with quick movements, like skiing. When I bike, I start on my left side, so I’m a little slower when I stop. They’re minor things, and unless you know me, you probably wouldn’t notice. You’d just think I’m old and slow.

Taylor (25:47)

That’s fascinating, because for me it’s almost the opposite—I don’t like sitting. After my injury, I lost my vision at 18, and I had severe muscle atrophy in my legs. I used a wheelchair for a while—about six months.

Jennifer (26:14)

Yeah, that’s a long time.

Taylor (26:16)

After being in a hospital bed for about a month and then using a wheelchair, I developed a lot of sensitivity. If I sit for too long, it starts to feel like needles. Over the years, I’ve gotten used to standing, so when people say, “You can take a seat,” I’m usually like, “No, I’m good.”

Jennifer (26:42)

And you’d rather stand.

Taylor (26:44)

Yeah—it’s interesting how it’s the opposite for us.

Jennifer (26:50)

Mm-hmm. Yeah—standing in one spot is the hard part for me. Sitting and standing still aren’t great for anybody, but it affects some of us more than others.

Taylor (27:05)

You mentioned Bike MS coming up in June. Can you tell us a little more about that?

Jennifer (27:15)

Sure. This will be my sixth year doing Bike MS. It’s a fundraiser, and it’s a two-day ride. The route has changed over the years, but I do the full ride—about 135 miles over two days.

Ironically, shortly after I was diagnosed, my husband—who’s a big cyclist—said, “Well, now we have to join my friend Steve’s Bike MS team.” A friend from his college is the team captain, and it introduced me to a really great community. It’s now something I can’t imagine not doing. The first year, I rode a regular bike. It was during COVID, so it was more of a one-day ride and things weren’t normal. I was the last person across the finish line, and my husband stayed with me the whole time—he’s an avid cyclist, so that took a lot of patience.

After that, I got an e-bike, and I’ve ridden it every year since. It lets me keep up. I don’t have a throttle—it’s not about speeding—but it helps on hills and makes the ride more comfortable. I’m proud to say I ride an e-bike, but e-bikes can get some flack. People will come up behind you and say things like, “Can I draft?” or “Want to trade bikes?” It’s another example of how disability awareness—or lack of it—shows up.

Taylor 29:08

Yeah, that yeah, that is pretty cool here on that in that context of biking. Never heard that before, but yeah, that's pretty cool. And I'm glad you you found that and it's helped in that process. Yeah. So you talked about being introduced to this community, like how has that changed the way you view your own situation or mental health or like everything?

Jennifer 29:32

Um, I mean, it was great, especially since I was newly diagnosed. So the first ride, I was diagnosed um at the end of December, and then the ride is in June. So for me, um, getting to know other people who have this disease that both either they support someone with MS or um or they're riding the ride with MS. Um, it was just nice to talk to people who understand what it is you're dealing with. And uh it's been great.

Taylor 30:02

So that's awesome. Yeah, I I can relate. I'm always encouraging people, I mean, really whether you have a disability or not, finding community because whatever you're going through, having others who can relate to what you're going through and share ideas on coping with stress or anxiety or any mental health issues or physical health, like that's it's been game-changing for me, and it seems like it's been good for you as well.

Jennifer 30:31

Yeah, definitely. Yeah, and it's interesting. One of the things that I am um, I actually have the approval from the National MS Society to do. Um, I just need to finalize the name and um determine how I want to kick it off, but um, establishing a group in the Denver metro area for people, there won't be an age cap on it, um, but people living with MS who want to remain active. Um, one of the things I found the Bike MS community is great, but we tend to get together just, you know, leading up to the event, starting in say March through June, um, and then everyone goes back to their lives. But there's a lot of great informative um support groups and things like that, but there isn't really anything sustained. And and I I often find that um it just presumes disability and what you can't do. And so I'm really, and especially those over age 40 or 50, I have uh looked for things that are active groups, like there's a a a group group that does surfing. I don't remember if it's can do MS or something like that, and they surf off of the outer banks of of North Carolina, and I thought, I would love to do that. I've surfed a few times, I don't, not very good, but I'd love to do that. And so I looked at the website and I did the disability index and I rate very low on the disability index, like a one or two, but it only went up to I don't know, it was 35 or 45. I was too old. So I was I'm excluded from doing that. And uh so I really am looking for a not that I'm gonna do a group like that, but just connecting with other people like me who are connected to um, who are committed to being active as we age with multiple sclerosis. We're not, you know, using it as an excuse for what we can't do, but you know, we're committing to ski, we're committing to surf, we're, you know, we're doing whatever we can. Maybe you have to have an accommodation, maybe not, but at least people who understand that it's not easy, but you're still doing it.

Taylor 32:39

Oh, that's awesome. And um I'm always doing the same thing, encouraging people to get more like you never know what you might be able to do. You may not be able to do it as well as some others, but that's fine. Like you were saying, like finishing last in the race the first time. Like I thought, who cares? There were millions of people who didn't do the race at all.

Jennifer 33:01

Like, yeah, yeah.

Taylor 33:03

So, like just doing it and getting out there and trying new things because you might find something that suits you really well. Like for me, I found jujitsu. I thought I was someone recommended, I was like, no. But I've actually started doing it, and there are certain situations where I feel like my blindness is actually a tool, and I never would have thought that unless I tried it. And so um that's opened me up now. And like anytime someone asks, Do you want to try this? I'm like, Yeah, sure. I'm probably gonna be off lead the first dozen times or so, but like I tried pickleball for the first time this past weekend, uh, scored two points the entire time. But it was fun, yeah, yeah. And and I'll get better if I do it more. Like just because I'm blind or you have MS or someone has anything going on, whether it's a disability or whatever, like doesn't mean you can't try it.

Jennifer 33:59

Yeah, exactly. And even if you only score two points, at least you got out there and you know, moved and participated with friends or other people doing it.

Taylor 34:08

So yeah, I I did get a little sunburnt, but other than that, it was a good time.

Jennifer 34:15

Good.

Taylor 34:15

Yeah, and I'm excited that you're starting that group and I would love to stay connected and like hear updates on it. So that's pretty cool.

Jennifer 34:23

Yeah, I need to uh, like I said, figure out what do I want to call it and uh and then get the logistics um ironed out. But especially given that I was diagnosed, you know, in my 50s, just seeing other people like me who, you know, are committed to still being active. And as anyone ages, we want to be active. Um, but especially aging with a disease that could be a disability. Um, I also want to give other people and even young people, you know, that this doesn't mean this diagnosis does not mean that you're gonna be disabled. And I'm optimistic that science and research will continue to advance the treatments and and I hope to see um a cure in my lifetime.

Taylor 35:05

So yeah, that'd be awesome. Yeah. So I feel like that's a good kind of way to end things or move towards the end here. So before we head out for today, are there any few things or one thing that you can put your finger on, whatever it is like you would want people to take away from this? I feel like that what you just said was great for that, but do you have anything else you would like to highlight or kind of reiterate for everyone?

Jennifer 35:35

Well, I think what you and I talked about, um, and it's broader than me and and in this disease, but is just don't presume, you know, that just because someone has MS or if you saw them during, you know, their their flair or their rough time when maybe things were not their normal, that that that doesn't define who they are. You know, I think staying engaged with people and you know, asking questions. Don't be afraid to ask questions. Don't just assume because of this disease or this diagnosis that they can or cannot do something. So I think that's the most important thing I like to leave people with.

Taylor 36:16

Oh, that's wonderful. Yeah, and I'm really excited to keep in touch and see all the really great things you're doing. Good luck on the bike ride. Yeah, I'm looking forward to hearing about that. I'm sure our other guest in this series, Bobby. Yes, is he doing it as well?

Jennifer 36:32

He is. He didn't do it last year, and everyone wondered where he was, but I guess he moved. Um, I think, and I also learned he lives just a few blocks away from me now. So yes, Bobby will be there again. And uh yeah, it's a it's a good time. It's we're we've got a new route, but um it's gonna be uh a two-day ride where we don't usually we would start on Saturday morning and then you ride Saturday and Sunday. Now we're going up Friday night. We still start Saturday morning, but it's it'll be a little bit of a different format, and so we're all looking forward to that. So it's a great, great time.

Taylor 37:05

And that's awesome, y'all. Make sure I stay connected with you and Bobby and see how that goes.

Jennifer 37:10

Yeah, yeah.

Taylor 37:12

Well, thank you so much, Jennifer, for joining us for Day in Life. It was great to get to know you, and I really appreciate the perspectives you share it. I'm really, really thankful.

Jennifer 37:22

Yeah, thank you, Taylor. It was nice to get to know you and have this opportunity. So look forward to staying in touch.

Taylor 37:29

Wonderful. Well, thank you all so much for listening and/or watching, and look forward to see you all next time in another episode of Day in the Life. Thank you all. Thank you all for joining us while we explore accessibility and disability. If you enjoyed this podcast, check out more episodes and show notes at accessiblecommunity.org slash podcasts. Remember, be accessible and be inclusive.