WEARING YOUR HOPE ON YOUR SLEEVES

WEARING YOUR HOPE ON YOUR SLEEVES
'Steps of Strength & Hope with MS'
Exclusive Interview with Adam Powell
Featured in 'Innerviews'
Hosted by Allié McGuire

​When life told Adam Powell to stop, he found another way to go. Living with multiple sclerosis, Adam learned early on that strength isn’t about how far you go — it’s about how you keep going. Now, with neural sleeves helping him move in ways once impossible, his journey continues as proof that hope is more than a feeling — it’s a force in motion.

ALLIÉ: Focusing on your MS journey from diagnosis day until now, remind me how long it’s been since that day?

ADAM: It's been just over six years. It was June of 2019.

ALLIÉ: Okay, so just over six years. As you and I both know, while there are many obstacles that MS presents, especially with primary progressive multiple sclerosis, which you have, what is the one that has been the most frustrating for you today?

ADAM: The biggest one, and one I still fight to this day, is my legs and trying to walk. After I was diagnosed, it was five months before I was in a wheelchair, and I was in that wheelchair for about nine months. Then I started doing my best to get out of it and walk again. I’ve been able to, and now I just keep moving that along as best I can. It's not pretty. I tell people, I try really hard to walk this badly—and that’s the truth.

​ALLIÉ: Try really hard to walk this badly. Let’s talk about the fact that you’ve come a long way since that diagnosis. What led you to discover Neural Sleeves? I want today to be a sleeve conversation. How did you discover it, and what was your first experience with it?

ADAM: I discovered it years ago, when they first got FDA approval. It’s been on my radar for a long time. I remember reaching out to them early on and saying I was interested, but I needed two of them. There was no point for me to have only one because one leg is bad and the other is worse. They were just launching their first products and said they couldn’t do that at the time. So, I kept an eye on it. I happened to go to a conference in Branson, Missouri, back in August—Modified by MS, hosted by Matthew Price. He does a lot for the MS community. This was his second big conference. I went down to Branson, Missouri. I actually spoke down there too, which was cool. Cionic happened to be there and had a table set up with vendors. I was like, oh, this is awesome. It’s been on my radar for years. Now I can actually talk to them. Now I can try them out.

As soon as the day of talks was over, I remember my friend Michael Zink raced out there to beat me so he could be the first one to try them out. He did, and it helped him. He’s pretty mobile, but he gets a problem where, the more he walks, the more his drop foot comes in, so it can help him in the long run.

I tried it on, and they let me have both sleeves. We got dialed in—it doesn’t take long—but we were trying to get the right amps to each muscle to make my foot raise the right way. It’s really cool what you can do with those. So, we finally got all eight sets of electrodes set, four on each leg. All your major muscles—hamstrings, quads, shins, calves—it’s firing them all. I took a walk without it turned on, just the sleeves on, and walked down the hall. I was stepping in front of myself, getting this hitch in my knee, hunched over—just my normal walk. Like I said, I try really hard to walk that bad, but I still walk, and I’m proud of that.

When I got to the other end, they turned it on, and I just started walking. It felt good—smoother. I felt like I was walking better. I didn’t have as much shaking or ataxia. My foot wasn’t crossing over the other. It felt really good to me, which I was super proud of. One girl said, “Oh my God,” and other people were like, “Holy cow.” I thought, wow, this is really good. Then I saw the video of it, and it blew me away. You see my normal walk, and then my walk with it—and this was the very first time I ever had it on. My posture was completely upright again. I didn’t realize that while walking, but when I saw the video, I thought, oh my God, I’m walking almost normally. I would’ve liked to wear them more, but so many people wanted to try them because they saw what it did for me. They were like, holy crap, this is amazing. Right then, I was sold.

ALLIÉ: So, you were sold when you saw the results. What about the moment before you put them on? I’m wondering about the balance between skepticism and hope before you had proof.

ADAM: I was actually pretty hopeful because in physical therapy I’ve done a lot of electrical stimulation, and it’s helped me—like the RTI bike. When I wasn’t walking, we used the RTI bike to help fire my muscles in the sequence of riding, so they got moving again. I’ve done TENS units. When I was learning sit-to-stand, I used TENS to help me come up onto my ankle. I’m used to the stimulation and have seen a lot of results from it. The latest before that was TSS—Transspinal Stimulation. My therapist came back from a conference and told me about it. It was originally made for spinal cord injuries, sending electric signals through the spinal cord to trigger responses. She said, “Why wouldn’t it work for MS?” and asked if I wanted to try. I said, hell yes, let’s do this.

I was her guinea pig, and it’s such a strange sensation. The only way I can describe it is it feels like an electric woodpecker on your neck. As I was walking, I felt like I could shoot lightning out of my fingertips. It’s very weird to get used to. It’s mobile, but she had to carry the whole thing on a cart next to me because I was hooked up to wires. It made me walk better. Again, it took away my ataxia. I wasn’t shaking, I was walking straighter, my stamina was better. We did a little the first day, a little more the next, and by the third time I used it, I walked out to my car without stopping or using my stick. That was huge. The residuals were awesome. ​So, when I went into the Cionic experience, I was very hopeful because I’ve seen what electrical stimulation can do. It had been on my radar for so many years that I was pumped to see what this could do. There was zero skepticism from me.

​ALLIÉ: On the opposite side of skepticism—in your words, you’ve described these Neural Sleeves as a game changer. Was it that first time you tried them, or another moment later, when you realized they were helping you do something you hadn’t been able to do in a long time?

ADAM: Honestly, it was right when I tried them for the first time. That little two-minute video clip was the only time I had them on then. I was in Branson, finished up my trip to Colorado, and by the time I got home, the sleeves were already there. I had my appointment to get them set up and then I was off. What’s great about this company is they’re small and new—many people don’t know about them. I posted that video on my social media and it got about 70,000 views. It blew up. The company saw it and said, “We’re going to make you an ambassador,” and they gave me the sleeves. Even if they hadn’t, I was buying them anyway.

I had them set up and went outside. I walked without them first, then with them, and you could see the difference. The next day, Friday, I went outside and did something I’d never done—I walked down my driveway, down the road three houses, turned around, and came back without my stick. That was something I had never done before. When I was learning to walk again, I’d have to rest four, five, six times. I carried a tripod stool because I had to sit and rest. But this time, I just got up, walked, and did it.

The next day, Saturday, we had a golf outing for one of my good friends who passed away last year. I wanted to support his wife and kids. I figured I’d maybe play three holes and get some funny footage of me swinging and falling over. I golfed an entire 18 holes and walked almost four miles that day. There’s no possible way I could’ve done that without the sleeves. Being new to them, I was experimenting with the app, turning up my shin setting as I got tired so it would raise my foot more. The batteries last about eight hours—I wore them for ten and a half because I turned them off when I wasn’t walking. Afterward, even when they died, I still walked safely without my stick. The residuals trained my muscles and reminded them what to do. I couldn’t believe I golfed 18 holes. I just golfed another 18 this past Saturday. I don’t even like golf.

ALLIÉ: Like it or not, you’re going to be a golfer now, just because you can.

ADAM: I’m going to be a golfer now, just because I can. Exactly.

ALLIÉ: I’ve seen the video—it’s incredible to witness. Seeing is believing. But it’s one thing to see it; it’s another to feel it. Not just physically, but mentally and emotionally. Let’s talk about that.

ADAM: It’s been a whirlwind. That walk to my neighbor’s house without my stick was one of the longest walks I’ve taken—it was incredible. Being able to golf that day, to support my friend’s family, that was amazing. Even little things, like going to a restaurant and leaving my stick in the car, feel huge. The bartender said, “Something’s different.” I told her, “Yeah, I don’t have my stick.” She said, “What? I’ve never seen you without it.” Those small moments are amazing. Same thing when I walked into the store without my stick—it’s the little victories. They also have a cycling mode. At first, it only engaged my quads and hamstrings, not my feet, which I needed, so they adjusted it. I told them what I needed, and they listened. That’s one of the best parts—they care. I post about it, and the founder comments personally. They engage and support their users.

ALLIÉ: The way it should be. Finally, it is.

ADAM: Exactly. I’ve been talking about it a lot. I know at least six or seven people in the MS community who’ve gotten them now. Whenever I’m online, that’s the first thing people ask me about—the sleeves.

ALLIÉ: It’s absolutely amazing. You’ve said that with the sleeves, you’ve been able to bike six miles, golf, and do things that once felt impossible. What goes through your mind when you’re out there moving freely, doing something MS once took from you? What’s Adam’s heart saying to that?

ADAM: I feel amazing. It honestly feels like I got pieces of my life back. Things I never thought I’d do again, I’m doing. It gets my mind spinning—what else can I do? How much more can I walk? At next year’s Walk MS, will I walk the whole mile without my sticks? I’m always asking, what’s next? Let’s keep pushing and show others that there’s something out there that can help them. If I have to be the mouthpiece for that, I’m all for it. I love that.

​ALLIÉ: I can’t think of a better mouthpiece than you, Adam. You’re not just wearing technology—you’re wearing hope. For those who feel stuck in the symptoms of MS and unsure if progress is possible, you’re living proof. If you could look them in the eyes and tell them something about why it’s worth trying, what would you say?
​
ADAM: It’s the same message I always share: just do something. Try to be a little bit better than you were yesterday, no matter what that looks like, no matter what stage you’re in—because I’ve been in all of them. If you can’t do sit-to-stands and you do one, that’s a huge win. Tomorrow, do two. If you can’t straighten your leg, and you do, that’s a win. Keep trying to be a little better tomorrow than you were today. It’s that simple. It’s hard, but it’s simple. You have to have the mindset before you can do it physically. I say that from experience. When I was learning to walk, I was hunched over a walker, braced from thigh to toe, throwing one foot in front of the other and hoping it landed right. I just kept repeating that for years, and now I can walk. The sleeves are just an addition to that hard work. I put in the years, and now I’m taking pieces of my life back. It’s incredible.

They’re actually comfortable. I barely know I’m wearing them. The battery pack is small, lasts about eight hours, and clips to your thigh. It’s amazing. I can’t say enough about it. Like I said, I’m always wondering what else I can do now, how much more I can push. I’m still fine-tuning everything—getting the electrodes in the perfect spot and figuring out what works best for me. It’s so user-friendly. You can control everything from an app on your phone and change it whenever you want. It’s awesome.

ALLIÉ: With MS, we’re always looking for new tools. It’s not curable yet, but until it is, we manage what we can—and find the tools that help us do it better. This is clearly one of those tools. It’s worked for you and could for so many.

ADAM: I hope so. I remember one guy at the conference—probably in his early sixties, diagnosed only a few years ago—his foot didn’t lift off the ground when he walked. It dragged every step. He tried the sleeves, and suddenly he was walking almost normally. He looked at me, almost in tears, and said, “I haven’t walked like this in years.” That’s what it’s about—getting that sense of normalcy back, being able to do what we used to do. I never thought I’d be able to do this. No way.

ALLIÉ: And yet you can—and you are. 

ADAM: And I plan to keep going. ∎

Follow Adam on Instagram:
@msd_with_the_wrong_mfr
Learn more about Adam as an AwareNow Official Ambassador:
​www.awarenowmedia.com/adam-powell