DEFYING ALL ODDS w/Adam Powell

Living with MS means carrying a weight most people can’t see—and finding the strength to move forward anyway. For Adam Powell, that strength isn’t just in surviving; it’s in creating a life that speaks louder than the diagnosis. As someone who shares this journey, I sat down with Adam for an honest conversation about what it means to live fully when every day brings new challenges. Together, we talk about adversity, advocacy, and the choice to stand tall when it would be easier to fall. As my sister says, “I’m not dying with MS. I’m living with it.” And Adam is living proof of what that can look like.

ALLIÉ: Because it’s a good place to start, let’s go back to the beginning of your life with MS. Please share the story of your diagnosis day.

ADAM: All right, so I officially got diagnosed on June 17, 2019. But the very first symptoms I had weren’t like most people who say, “I’ve had MS for 15, 20 years.” That wasn’t the case for me. My first symptoms showed up around October of 2018. I was working for UPS in Columbus, helping open a new building. I had just bought new boots, and my feet really hurt—so I just wrote it off.

Then came Christmas, which at UPS is absolutely insane, as I’m sure you know. I’d come home from work and feel like my legs were cold, numb, and just... off. But again, I told myself, “Of course they do. I’ve been outside in the cold for 12 hours.” So, I wrote that off too.

Then Christmas Eve comes along. I’m at my sister’s place, and suddenly I get this awful groin and lower back pain. I could barely walk for three days. I remember she gave me a TV, and it sat in my car for three days because I couldn’t carry it up the stairs to my apartment. That’s when I thought, “Something is wrong.”

I actually went to the doctor, which is rare for me—I’m not a big doctor guy. The doctor thought it was a hernia and referred me to a specialist. So I went. The specialist said it wasn’t a regular hernia, but a “sports hernia,” which to this day I still don’t fully understand. He sent me to physical therapy. The therapy helped—my groin and back pain got better. The therapist thought it might be a pinched nerve from all the physical labor I’d done over the years. That kind of made sense... except usually that kind of nerve pain only affects one leg. Mine was in both.

At work, I started noticing I needed to touch things more to keep my balance. My legs felt heavy. At therapy, I kept asking, “Why can’t I balance on this board anymore?” I could always do that. By April, the therapist said, “I think you should see a neurologist.” And I was like, “Why?” I didn’t know anything about MS. I didn’t know anyone with MS. She said she thought I might have it, and I was like, “Oh. Okay… What’s that?”

So I saw a neurologist. Within two months, I had a diagnosis: primary progressive MS. Just like that. It was fast. I was taken off work immediately. I had been with UPS for 12 years, and just like that—I was done.

ALLIÉ: That’s wild. I mean, me myself living with relapsing remitting MS, it started small. But for you, it was just all in—right away.

ADAM: It was a very hard pill to swallow, especially because I didn’t know anything about it. I had to Google it just to figure out what it even was. But reading the definition online doesn’t really explain it—it’s different for all of us.

My first MRI showed over 30 lesions in my brain and more than a dozen on my spine and neck.

ALLIÉ: Oh my gosh.

ADAM: Yeah. What I’ve since learned is that those lesions take months to form—so clearly I’d had MS for a while, but it had been dormant. Then in October, I lost my best friend—basically my brother. That stress just unlocked something. After that, it all went downhill.

ALLIÉ: And the fact that you had noticed things… but just kept writing them off…

ADAM: Exactly. That was October. By December, I was finally going to the doctor. So it wasn’t a long timeline. When I got diagnosed, I could still walk, just not for long distances. But within five months—by November—I was in a wheelchair. That quickly.

I’d never missed work before. That just wasn’t me. So I didn’t understand how disability worked. I was trying to figure out what to do with my time, but also—do I still have my benefits? How am I going to get paid?

In November, I tried logging into the UPS benefits portal, and it wouldn’t let me in. I was using the same password. I didn’t get it. So I called and they said, “Oh yeah, you can’t access it because you don’t have insurance. You haven’t had insurance since October 11.” So over a month before, I had lost my insurance—and I didn’t even know it.

ALLIÉ: What must have been going through your mind? Here you are, losing your ability to walk...

ADAM: Well, I hadn’t lost it yet. But that’s what made me lose it. I didn’t know what stress could do. I didn’t know anything about MS. I didn’t realize how bad stress could be. But I spent hours every day on the phone trying to fix it. It took about a month. Between my employer, the insurance company, and my doctors, it was a mess.

It turned out my first neurologist—who was terrible—had taken me off work, but he kept telling the insurance company I was fine. So from their side, they were like, “Why isn’t he working then?” Meanwhile, I’m being told I can’t work. It was a mess. I lost my insurance, couldn’t get Ocrevus—which at the time was the only approved drug for primary progressive MS—and couldn’t get my next MRIs.

Eventually, I switched doctors, but the old guy kept coming back to haunt me. By the time it all got sorted, I had gone from using a cane to needing a wheelchair. It all happened so fast.

ALLIÉ: You moved through those stages so quickly.

ADAM: Yeah.

ALLIÉ: You’ve said that MS has changed everything—but also, somehow, nothing. I love that. I want to hear more. What have you lost with MS—and what have you found?

ADAM: I mean, I lost everything. My career, my ability to play sports, my independence. I couldn’t walk. I was 37—in the prime of my life. I loved working, going to concerts, partying, playing sports… and suddenly it was all gone. Just disappeared. I had to cope with that.

But over time, MS opened my eyes. It changed how I see the world. It forced me to slow down—and really see things. I stopped taking life for granted.

Once I was finally able to drive again, I went on a cross-country road trip. I visited seven national parks. I met up with other people living with MS along the way. That’s something I never would have done when I was still working. I would’ve taken a week off, maybe gotten some tattoos, gone to a few concerts, then gone right back to work. But MS slowed me down—and gave me a new perspective.

ALLIÉ: The curse... and the blessing at the same time.

ADAM: Exactly. But it was a tough road. After the insurance debacle, I finally got back into physical therapy. I had stopped driving because I didn’t trust my feet. Driving was my job—I knew I couldn’t do it anymore. So I tried getting hand controls put in my car. Things were going okay for a while…

Then March 2020 hit. COVID shut the world down. I couldn’t leave my house for four months. I couldn’t walk, couldn’t drive—and honestly, I was terrified. I had this new disease. I was on an immunosuppressant drug. I didn’t know what would happen if I got COVID. So I stayed home.

Those four months were the darkest, most depressing time of my life. I was grieving what my life used to be, questioning if it could ever be anything again. And it’s messed up to say, but during that time, I had to consciously kill my old self—grieve the version of me that was gone—and start over. That’s what I did.

When things opened up again, I hit PT hard. I told myself, “I’m not the guy in the wheelchair. I will do everything I can to get out of it and stand on my own two feet again.” And I did. I still do. Every day.

ALLIÉ: That’s the constant reminder we give ourselves. It’s the MS warrior mantra. But there’s this part of your story that really struck me... you talked about pain—not just life being painful, but that pain for you is constant, and if it wasn’t there, you wouldn’t be able to walk. That blew my mind.

ADAM: Yeah, and it blows most people’s minds when I explain it. You know how doctors ask, “What’s your pain level, one to ten?” I’ve always hated that question. But now? My pain is never below a seven. It might go up, but it never goes down. It’s 24/7. Mostly in my lower legs—ankles, feet—and lessens a bit moving up to my knees and hips. I also have what they call the MS hug. I feel like I’m constantly wearing a corset, just being squeezed.

But I need that pain. My brain doesn’t know where my legs are anymore. Without that pain, I have no feedback. I’ve learned how to recognize the pain patterns—like if I bend my legs a certain way, I feel a certain kind of pain, and that tells me where my legs are in space. If I take painkillers, or even smoke weed to dull the pain, I lose that feedback—and then I can’t walk. 

One of my friend's kids, she's 11 years old. They were talking about it and how crazy it is that my brain doesn't know where my legs are. And her theory was that my legs and my brain were in a relationship. Then they broke up and my legs ghosted my brain. And I was like, that is actually brilliant.

ALLIÉ: So the pain is like a messed-up compass for your body.

ADAM: Exactly. A terrible compass—but a necessary one. That’s how we adapt with MS. It’s not a normal way to live, but it’s still living. I’d rather deal with pain and walk, than be pain-free and unable to move.

ALLIÉ: My sister always says, “I’m not dying with MS. I’m living with it.” So Adam, what does living with MS mean to you—not just surviving, but really living?

ADAM: It means doing as much as I can while I can. With the aggressiveness of my MS, I know it’ll get worse. I’ll deal with that when the time comes. But right now? Every day, I just try to be a little better than the day before.

It’s turned me into an advocate, a fundraiser, a public speaker. All things I never imagined doing. I just spoke at Baker College, and I’ve been invited to speak at an MS conference in Missouri. I’ll be on a panel talking about how I got out of the wheelchair.

Really, it’s just stubbornness. That’s what got me through. And I want to be that person for someone else—so they don’t have to go through it alone like I did. I run a monthly support group for people newly diagnosed—three years or less. It’s a safe space to ask questions, vent, just be heard. I didn’t have that when I was first diagnosed. I would’ve loved it. So now I create it for others.

ALLIÉ: Absolutely. Let’s talk about that. You do so much advocacy and create space for others to feel seen and supported. But when the crowd clears and it’s just you—what helps you feel supported and seen?

ADAM: Honestly, my parents. They’re incredible. When I couldn’t walk or drive, they did everything for me. They never complained, but I felt guilty. That guilt pushed me to get back on my feet—literally. My sister’s amazing too. And a lot of the people I’ve met online—on Facebook, TikTok, Instagram—they’ve become more like family than some of my old friends. I lost a lot of friends after my diagnosis. I get it—it’s a tough thing for people to process. It makes them question their own mortality.

But I found my tribe. And that keeps me going. I do a lot of Zoom calls, and I’ve met many of these folks in real life now during my travels. It’s a beautiful thing to meet someone in person after only knowing them as a little square on a screen.

ALLIÉ: It’s that connection. Especially with invisible illnesses, the isolation can be crushing. But when you find your people…

Adam, you’ve been handed something most people wouldn’t know how to carry. For a while, you didn’t. But you figured it out. Today, you not only carry this diagnosis—you carry others too. You support them. You give them hope. So, my last question is: What gives you the strength to carry on—not just for yourself, but for others?

ADAM: That’s tough. I think, honestly, it’s just stubbornness again. I’ve never let anyone tell me what to do—and I wasn’t about to let MS tell me either.

I still fight with it every day. I’m in pain all the time. Walking still sucks. But I don’t focus on that anymore. I focus on what’s next—my next talk, my next event, my next walk. I always give myself something to look forward to. Looking back doesn’t do anything for me now. So I keep looking forward. That’s what keeps me going. ∎​

Find and follow Adam on Instagram: @msd_with_the_wrong_mfr