This week’s special episode—produced in partnership with Institute for Neuroscience, Neurotechnology, and Society at Georgia Tech – features two powerful stories from individuals whose lives have been shaped by brain-computer interfaces.

Part 1: As his Parkinson’s symptoms worsen and medications take a toll, Brandan Mehaffie faces a life-altering decision: continue down a difficult path or undergo brain surgery to implant an electrode to stimulate deep areas of his brain.

Brandan Mehaffie: Graduate University of Pittsburgh School of Pharmacy. Retired Director of Pharmacy Asset Protection Rite Aid Pharmacy. Married 25 years to wife Kelly and have two adult daughters Mae and Riley. Diagnosed with Parkinson's Disease in 2016 and recipient of deep brain stimulation surgery in 2022. I am a huge sports buff and gym rat. I enjoy spending time with and cooking for family and friends.

Part 2: After an accident leaves Ian Burkhart with complete tetraplegia, he grapples with losing his independence — until he’s offered a chance to participate in a groundbreaking clinical trial using muscle stimulation controlled by a brain implant to help restore movement.

Ian is a C5 complete tetraplegic from a diving accident in 2010. He is the founder and president of the BCI Pioneers Coalition and the North American Spinal Cord Injury Consortium President. After participating in a few clinical trials, he understood the need for engagement of individuals with lived experience from the start. Ian was the first person in the world to restore movement to a paralyzed limb using a BCI neuroprosthetic. He is also the Executive Director of the Ian Burkhart Foundation, which raises funds for medical equipment for other individuals living with paralysis. His research focuses on amplifying the lived experience of people with disabilities.

EPISODE TRANSCRIPT

PART 1

It's 2013 and, in my opinion, life is going pretty doggone good for me. I graduated pharmacy school. I married my high school sweetheart. I had two beautiful daughters who were both healthy and happy. My professional career was going great. I was about two years into my dream job as Director of Pharmacy Asset Protection, as you heard. In my personal life, I had taken up competitive endurance sports. I was very into cycling and kind of matriculated a bit into age group competitive triathlon.

It was a beautiful, crisp fall day on the weekend. And like most weekends around that time of year, I was doing an event. My brother‑in‑law, who's about three years younger than me, was my training partner and buddy. He was up from Raleigh. We were competing in the Hershey 10k. Unfortunately, he whooped me by about seven minutes, which was not normal. Trust me, not normal.

Brandan Mehaffie shares his story at Ferst Center For The Arts in Atlanta, GA in May 2025. Photo by Christopher McKenney.

After we finished and I took some significant ribbing from him, I said to him, “Buddy, my whole right side of my body was cramping up during it.” I said, “If I didn't know any better, I felt like I was dragging the whole left side of my body.” So, we chalked it up to bad training or whatever and just moved on.

Over the course of the next couple weeks, I didn't feel myself. I was used to getting up at 4:30 in the morning and doing multiple workouts for two hours, and I couldn't even drag myself out of bed. I was racked with pain. Something just wasn't right.

I decided to take myself to my primary care physician, who I had known for about 10 years. He was a CrossFit gym rat as well. I said, "Mike, I have no idea what's going on with my body, but something is not right."

We did some blood work and I went back. The blood work didn't show anything. I was a little disappointed that I wasn't getting an answer, but he put his hand on my shoulder and said, "Don't worry. We're going to get through this together." And we did just that.

This started about a two‑year process of me going through every conceivable kind of specialist that there was. I started with sleep study. I went to endocrine. I went to cardiology. You name it, I went through it. It took about two years and one of the last appointments on my healthcare journey was neurology.

My wife said to me, "Do you want me to go to this appointment?"

I said, "Well, given the way that all the other appointments have gone and I haven't gotten any answers, they've been pretty quick." I'm like, "Why don't you come. We'll do that. We'll get it over with and we'll go grab lunch before you go back to work and I go back to work."

So, went in to see the neurologist. Pretty much immediately when she started doing her battery of exams, I could tell that there was something just not right with the left side of my body. But being young and invincible, I was thinking pinched nerve something, you know, pop some Advil and I'll be fine.

As she rolls back on her little stool and gets in the drawer, she comes forward with a white and red folder that says Parkinson's Foundation. I'm thinking to myself, “Who's that for?”

She starts talking to me and says, “There's no definitive diagnosis for Parkinson's disease, but I've seen it before and I'm fairly certain that you have it.”

It just wasn't exactly registering with me at the time of what she was saying until I looked over at my wife's face, which was now covered in tears. Pretty much at that point, the rest of the appointment was like listening to Charlie Brown's teacher and I kind of zoned out.

After we left the appointment, we got to the car. I'm trying to reassure my wife that everything's going to be okay. In reality, I had no idea what my future would hold. But as with any instance in life, you soldier on and you move on.

So, I went back to work, she went back to work. I continued with my career and my journey with Parkinson's.

Flash forward about six years. I'm now six years into my journey with Parkinson's. At this point, I really can't hide my symptoms from my co‑workers or practically anybody. I'm not sure how much everybody in the crowd knows but tremors are pretty significant with Parkinson's. Unfortunately, I dealt with a lot of pain in my shoulders and muscle cramping, random muscle cramping called dystonias.

At that point in my career, I wasn't driving. I hadn't driven for about eight months. I stopped being able to travel, especially by myself. I was having to take naps throughout the day.

The gold standard medication that they give you for Parkinson's is called Sinemet. Unfortunately, Sinemet works great, but the longer you have Parkinson's, the more you have to take to elicit the same control of your symptoms. Of course, with that, the more you take, the more side effects you get. I was taking other medications for dyskinesias and I just was in a bad way.

Unfortunately, I was at a crossroads in my life at 47 years old of trying to figure out do I continue with the status quo and watch my career dwindle into nothing and watch my life with my family and my kids not being able to go on hikes or family vacations and things of that nature.

I was very fortunate that my neurologist recommended that I check into a procedure called deep brain stimulation, which, if you're unfamiliar with it, and I apologize for the super smart people in the audience, but you can think of it as like a pacemaker for your brain. Essentially, they put a device in your chest, wires run up into the leads that are in your brain and they send an electric current there to help offset some of the physical symptoms of Parkinson's.

Well, let me tell you, thinking about somebody messing with your brain and going through brain surgery is not something I came upon lightly. There were many nights that I sat with my wife and we talked about the pros and cons. I did my research on the devices and the surgeons and I went to seminars and things of that nature. The final thing that made me decide to do it was listening to my wife saying, "Live your best life now."

So, that summer of '22, I underwent deep brain stimulation surgery and it was an absolute success. It changed my life in ways that I can't even tell you for the better.

The downside was that, right around the same time, now that I could feel what was normal versus Parkinson's pain, I came to find out that my right shoulder that I had hurt in high school was now in need of full reconstruction, including bicep tendon replacement. I was recovering from brain surgery and now I was going to be down for a year that I couldn't do anything. I couldn't drive. I couldn't lift more than five pounds for a year.

Also at that time, I kind of had a heart‑to‑heart with my employer after my neurologist talked to me and said that she thought that the stress that my career put on me was what exacerbated my symptoms and made things worse much quicker than they normally would have. So at that point, I had a heart‑to‑heart with my employer and we decided to mutually part ways in January of that year.

Being retired at 47 years old, not the coolest thing in the world. It was pretty fun the first couple weeks, but when I tell you that I hit the end of the internet and pretty much every streaming platform known to man, brother, I've seen it.

Unfortunately, I also found quite a few bottoms of Dorito bags along the way as well. I was sitting around with my wife going to work, all my friends going to work, my kids going to school, and there I am.

My job was a pretty high‑paced job. I went from being a nerd with two iPhones going a thousand miles an hour to zero in the blink of an eye. That just didn't sit with me too well, because with nobody around, nothing to do, nowhere to go, nowhere to drive, all I could do was be in my own head. It was very difficult.

Thinking about how I felt with Parkinson's and what my long‑term prognosis and the fact that it's not going to get better, it's only going to get worse, really was a mind job for me. The longer things went on, the deeper and darker my depression got. I can honestly tell you, it was probably one of the darkest periods of my life. I had considered taking my own life a few times, and it was very, very difficult.

I had tried multiple counselors, I went to grief counselors, I went to multiple therapists, psychologists, psychiatrists with pretty much little help. Around the same time that I finally got cleared for my shoulder, I finally found a therapist that I connected with named Bill. I got cleared and I jumped right into trying to do what I did before.

I started trying to exercise, trying to run, trying to swim, and it was torture. And torture in the sense that when you're a competitive athlete and you know what you were capable of before, and you're trying to do those same things again and you're seeing the result is nowhere near what you used to be, again, pretty tough mind job and pretty torturous.

So, sitting in a session with Bill, I was explaining myself and complaining about who I was, who I was, who I was. Bill had a genius idea. He said, "Well, why do you have to do what you've done before? Why don't you try a sport or some kind of athletic something that you've never done before?" This was an epiphany for me.

Before COVID, I had heard about a program called Rock Steady Boxing for Parkinson's patients. It's basically you do all the drills that you do in boxing, but obviously we're not hitting each other.

So I said, “Okay, I'm going to do this. I'm going to jump in.”

And when I'm in, I'm in. So, I blew the dust off my gym bag, got some boxing gloves and I was ready to go.

I found a program at the Jewish Community Center not too far from my home. I was off on a Wednesday for my first Rock Study Boxing program.

As I walked into the gymnasium, I look around and I see about 18 to 20 60‑ to 80‑year‑olds. I'm like, "What the hell am I doing here?"

Then to make matters worse, the first day that I was there, they wouldn't let me participate because I had to get a waiver signed by my neurologist saying I was healthy enough to participate.

So, there I am and I'm stuck in the room. They had already introduced me to everybody and so I couldn't back out and leave. I got stuck sitting at the table with all the caretakers and spouses of the people participating. I'm like, “Oh, God, get me out of here.”

But the funny thing happened. I sat there and they were all incredibly nice. They were all incredibly welcoming. They were all incredibly interested in my story and what was going on. They talked to me about what their spouses and their partners were going through and I got a really good feeling from it, so I decided to go back.

Then I went back again, and I went back again, and I kept going back. It became like a family for me. It was more than just physical exercise. It was a support group, like a secret support group that I didn't even know I was getting into. It was a safe place for me where I could have Parkinson's and be normal and not have to talk about it.

I was going for about a half year and the JCC moved into a new facility, a nicer facility. They decided with the success of the Rock Steady Boxing that they had been having, that they were going to add some more programming to it so that we had five‑a‑day Parkinson's programming.

The director of the program was talking to us about what she was going to add. She started talking to the group about a program called Pedaling for Parkinson's or the Davis Phinney Foundation.

I thought I won the lottery. I'm like, “You're talking about indoor cycling, right?”

She's like, “Yeah.”

And I'm like, “Oh, my God, I used to do triathlon, I used to cycle.” I'm like, “Oh, that sounds so great.”

Then she dropped the bombshell on me. She goes, “How'd you like to be one of the cycling instructors?”

Well, that was all the spark that I needed. I've been there ever since, religiously. I teach every Tuesday and Thursday and I get to give something back to a group that has meant the absolute world to me in a place that means the absolute world to me.

A strange thing happened along the way. I've made a lot of really good lifelong friends that I'm invested in personally and they're invested in me personally. Yes, they're 60, 80 years old, but they're, in my opinion, friends for life, and I'm eternally grateful for it.

That's my story. Thank you.

PART 2

I had just finished my freshman year of college. I was 19 years old at the time. I was going on a summer vacation to start the summer break with a few of my friends and my girlfriend at the time and her family. We were all so excited to drive from where I lived in Columbus, Ohio to North Carolina. Got to the ocean and swimming in the waves.

Ian Burkhart shares his story at Ferst Center For The Arts in Atlanta, GA in May 2025. Photo by Christopher McKenney.

I remember the freedom of what I felt like of not really having any responsibilities right then and just enjoying myself. I dove into a wave so that way it wouldn't push me back too far, but what I didn't realize is that I was diving into a sandbar. So, I was diving into the shallow end of the ocean.

I immediately hit the bottom and I knew something was terribly wrong. There was this sense of stillness that overcame me where I couldn't move any part of my body. I was just trying not to panic, because I always remembered in any tragic situation or emergency situation, don't panic. Don't waste any energy that you didn't need to.

But in that moment, I knew something was terribly wrong because I couldn't get out of the water. I was really thankful that one of my friends realized something was going on and was able to pull me out of the water and flagged down medical care.

Then I remember the beach lifeguards took me to the fire department. I was laying on a stretcher and I could feel the wind from the helicopter blades being pushed down upon me as I was loaded onto the medical ambulance to be life‑flighted to the nearest hospital.

That's kind of the last memory that I have for about a day and a half.

But then we fast forward to me waking up in the hospital and a doctor telling me that, “You have broken your neck. You're paralyzed. You'll be a quadriplegic and you'll never walk again. You'll never be able to feed yourself again,” all these nevers that you'll never be able to do again.

To me, that was a big challenge because, like I mentioned, I was 19. I just had this first taste of freedom and independence in my life of where I was living on my own in college and really doing what I wanted to do. I felt I had the whole rest of my life ahead of me. This was just such an abrupt stop to that.

I remember looking at the doctor and just feeling like, “How can you tell me that when you don't know me? You've just met me. You don't know what I can do, what I can't do, but you're telling me that I'm not going to be able to do all these things in my life that are very simple things, things that I took for granted my whole life.”

That really motivated me to want to prove the doctors wrong and to prove everyone in my life that I was still strong and still could do whatever I wanted to do.

So, I went through traditional physical therapy and rehabilitation. I was able to regain some function where I was able to feed myself with adaptive utensils. I was able to drive a power wheelchair and scratch an itch on my forehead, but I still needed help getting in and out of bed, going to the bathroom, and doing a lot of daily activities that, once again, I took for granted in my life. That was a real challenge from where I was at before.

Then I got home from the rehabilitation hospital and I felt like I was watching my life pass me by, as if I was in a movie. I remember seeing my friends go out and continue doing and living their lives and doing things that I thought I would still be a part of. Instead, I was sitting at home, watching it.

I would try to do anything I could to help reach for some independence. So there were plenty of days where my parents would be gone, my sister would be at school, and I would be home for a few hours in between from when a caregiver left in the morning until when someone got home. And I would just try something. I would try to get myself a snack or get myself a drink. My family definitely got a little upset because they'd have to come home and pick up a mess on varying occasions of me just trying to get something out of the cabinets and then spilling all over the place.

For me, living with a spinal cord injury, I really felt like I could get used to not walking, but I couldn't get used to relying on someone else to do everything for me. So when I finished rehabilitation and my doctors and therapists and the insurance company most importantly said, “For someone with your condition, we feel like you've made all the improvements that you will. Have a nice life.”

That didn't sit well with me. I really just felt like if I could restore a little bit of hand function, that would improve my quality of life and my independence to where I would be able to do so much more for myself.

That led me to look into clinical trials as a way to participate in more therapy, or research to improve my quality of life. I was really lucky in the sense that I found one that was in my hometown. At that point, I was back to taking some college classes, had a really flexible schedule, it was close by and it allowed me to participate in this trial that was something that was going to be a big commitment, but it was still something that I was unsure of.

The trial, in particular, was looking at restoring hand movement for individuals with spinal cord injury and quadriplegia. Like I said earlier, that was my bottleneck. I felt like that was something that was perfect for me. It was the perfect storm for me to have my spinal cord injury exactly how it was, but it was also the perfect storm for me to be living in the right place at the right time and find this trial.

The trial involved implanting a device on the motor cortex of my brain that is responsible for the hand movement. That device was a Blackrock Neurotech Utah Array that essentially acts as a grid of microphones that can understand the language that the brain speaks. So when I would think about moving my hand, the computer could detect it. Then it would send that signal to another device hooked up to the computer that was a muscle stimulation system that would actually shock the muscles on my forearm to make my hand and fingers move.

I remember going in for one of the pre‑trial screenings. At that point, they were just connecting the stimulation system to my forearm to see if it could move. So I was laying my hand down and they had it connected. They were able to push some voltage into my muscles and I could see my hand move at that time.

It wasn't perfect. It wasn't anything super exciting to most people, but to me, that was four‑and‑a‑half years of me never thinking my hand was going to move again and I could see it move. That was really all I needed to know.

Now, my family, I had to convince otherwise. Voluntary brain surgery is not something that many people have, and just be like, “Oh, yeah, next Tuesday I'm having surgery on my brain.” With no direct promise of benefit for me, this was something that I was only going to be able to use while I was in the lab. It was something that wouldn't be permanent. It would just be really this proof of concept to see if this would work and that, hopefully, more people would be able to benefit from it in the future.

But that was another thing that set me at ease. That even if this was a failure for me, that the scientific community would learn a lot about that and that would help other people going forward. If it was a success, that's great. That means it works. And that means that this can then get translated into something that can be used in the real world and be something that, hopefully, I can benefit from.

My mom, in particular, it was really tough because she had stopped her life when my injury happened and moved into the hospital with me and was taking care of me. Now, I was telling her that, like, even with all the progress I had made in the last four years, I was ready to risk it all for something that may or may not work.

So, it took a little bit of convincing, but I was able to explain to them that the team that I was working with was extremely knowledgeable and I really felt like we were going to have success.

Success to me would have just been being able to open and close my hand and do it in the lab and make that be a great discovery that can push science forward, but it turned into even more than that.

We first started with just being able to open and close my hand. That was still a strange sensation as well, because when someone asks you to open and close your hand, you just do it. You don't think about it. As an infant, you kind of see how your body responds and you learn that way. But by the time you're a young adult, you don't have any memory of what it's like to actually control the muscles in your hand to make your hand move.

I remember sitting there with the researcher's arm next to mine and they would be cycling through an open and close with their arm. I was supposed to envision that I was controlling their arm to get a little bit of pseudo feedback. That kind of worked. I don't know. I think I was thinking about it the right way, but no one knew.

Then came the time where we hooked the system up altogether of me actually thinking about moving my hand. I would be cued on the computer screen when to start and when to stop and then that would be sent to the muscle stimulation system. Then that time where I first was able to think about opening my hand and see my hand open, I remember looking back at the researchers behind me and saying, “Okay, this works. Now you guys really need to get to work because this is something I need to be able to take home with me, I need to be able to use. Everyone needs to have access to this type of technology.”

So what was supposed to be a 12‑ to 18‑month trial ended up being something that lasted seven‑and‑a‑half years because we were just so successful. That was a journey in and of itself because we had that roadmap for the first 12 to 18 months, but after that, we were building the plane as we were flying it.

We were able to do some really fun experiments of started with just opening and closing my hand or moving individual fingers, but then we had one of the researchers was cleaning out their garage and saw a Guitar Hero controller and was like, "Oh, that would work. " It could show how the system worked to do individual finger movement and how quickly it responded. Brought that idea up the next time I was in the lab and I was all for it, because up until that point I was moving blocks around and doing all these kind of occupational therapy tasks that translate into real life but they're not things that I would just be doing if I was sitting at home.

So when we were able to play Guitar Hero, it was fantastic because it really showed that I could do the individual finger movements and the system worked quickly enough that I felt like I was really controlling my hand. It wasn't think about opening my hand or think about moving a finger and then count one, two, three, and then the hand opens. It was almost instant.

Now, I was never going to be able to play the piano or type on a keyboard, but it did allow me to play Guitar Hero, reach out and grab a cup, take a drink out of it, move things around in space. To me, that meant it would be a lot of independence if I could use that at home.

Now, seven‑and‑a‑half years later after the implant, we were starting to lose steam with the research. We're kind of running out of ideas of what to do but also running out of funding. We had applied for some different grants and things like that, but we had really kind of run the gamut of its course. That meant it was time for the device to be removed.

I knew that this was something that would come at some point. I tried to compartmentalize it in the sense that when I went into the lab, I was kind of Ian 2.0 with being able to move my hand again, but then when I left and got disconnected from all the equipment, I was really just back to where I was before I signed up for the trial. I think that was helpful because I didn't let it take up my whole identity, but I was wrong. It really did take up my whole identity and drove me into a whole new field of what I wanted to do.

While the time came for me to have the device removed, it was such a challenge because, now, I didn't even have that opportunity to go back into the lab and be connected to the computer system. But what it did was give me a lot of hope for the future and a lot of hope that these types of devices are going to be able to impact and help people and improve their quality of life, other people living with spinal cord injuries, different forms of paralysis or other neurological conditions.

So that really led me into doing what I do now for work, is getting individuals with paralysis or other lived experience involved in research from a perspective of not just being a participant but a partner in the research and making sure that these types of technologies are being developed in order to support those individuals.

So now it came back full circle of where I started off being told you're never going to be able to do this, you're never going to be able to do that. Now it's not a 100% never. It's a someday soon we'll be able to have this type of technology for you that will allow you to not completely fix your life, but really give you a lot of independence back and restore a lot of quality of life. With that, it's something where I'm so glad I was able to take that risk and have that voluntary brain surgery and participate in this type of research because it has really defined my life from doing it. I'm just so pleased to be able to then once again share that story with all of you here today.

Thank you.