Most of us can pretty certainly say that we are alone within our heads. We may joke about inner voices, but what really happens when there genuinely is an external influence deep within a brain? The answer?
In the case of two research pioneers, Ian Burkhart and Benjamin Stecher, the answer is nothing short of a miracle. These two souls both underwent life-altering surgeries – not just in terms of literally allowing a device to tap into their brains, but surgeries that would do for them what no pill, no prayer, and no person could do for them.
Ian Burkhart was paralyzed after a spinal cord injury endured while on holiday. What should have been a celebratory day at the beach, enjoyed, recorded, and then stored in his memory bank for future reflection ended in severe physical disability. Ian now serves as a Vice President of the North American Spinal Cord Consortium and is an advocate, speaker, and research pioneer.
Benjamin Stecher was handed a diagnosis of Parkinson’s Disease at the impossibly early age of 29. He should have been enjoying what many of us believe are the prime years of adulthood when, instead, he was trying desperately to hold on to a “normal” life. He scoured manuscripts, spoke to experts, and tested pharmaceutical cocktails to curtail the progression of his disease. Benjamin is an author, advocate, and chair of the Rune Labs Patient Advisory Board.
Both of these lionhearted men decided to do what few have done – they have invited a device to take up residence in their respective brains. Listen in to hear the first-hand accounts of the what, why, and how they have gone to such lengths. We’ll share with you their stories and their triumphs, and certainly their challenges along the way. At the end of this tale, you will know that both are superhuman, but not for the reasons you may think. You’ll hear about their journeys that have turned them into authors and advocates, and above all, men of science.
Learn more about Ian Burkhart through the Ian Burkhart Foundation and read Benjamin’s book, “Brain Fables”.
Special thanks to our sponsors, CorTec Neuro & Cirtec Medical.
Research & Interviews: JoJo Platt
Script: Arun Sridhar
Editing: Arun Sridhar
Sound design: Arun Sridhar & Swaminathan ThiruGnanaSambandam
Audio engineering/mastering: Swaminathan ThiruGnanaSambandam
Transcript
SPEAKERS
JoJo, Ian Burkhart, Benjamin Stecher, Arun Sridhar
Arun Sridhar 00:02
This is a SKRAPS studio production and you are listening to SKRAPS bio-electronic medicines brought to you with our sponsors, CorTec Neuro and CirTec Medical. Check out the amazing suite of both electrodes and implantable electronic support that our two sponsors can create and help you with your research on the websites CorTec’s website is coretec-neuro.com and CirTec’s website is CirTecMed.com. And before we go any further, can I just say that scraps will always remain free, but the production of scraps is not. Therefore, we thank our supporter, Professor Shadi Dayeh for his kind contribution, you can do the same thing. If you go to our website, SKRAPS podcast.com/donate. To donate as little as $5 a month, or of any currency of your choice to help us support the production of this podcast. In. This season, we are exploring the concept of bioelectronic medicines. Skraps is your podcast where we on your behalf, explore the unsaid underappreciated stories of science that goes beyond the usual facts, and can wait in a way that touches you personally. And this episode is no different. This is episode six of our series, SKRAPS bIOelectronic medicines and bio electronic medicines refer to those medicines that quite literally get on your nerves. By that we mean medicines that are prescribed by a physician and are implanted or thought to use in an outpatient setting to interact with the body’s nervous system that frankly, is ubiquitous and controls almost every body function that you can think of. If you think that’s cool, listen to this, bioelectronic medicines are therapies that sit alongside existing molecular treatments. And the world is changing so much so that the advances in engineering and biology means that these historically separate areas can now interact to create this novel and groundbreaking bio electronic medicines. Today we are going to talk about some research pioneers. But before we start, I must warn you that some parts of the episode can be sad and distressing. But this is exactly the reason why we are producing this episode. So with that disclaimer, let’s jump straight in, shall we? To start, we’re joined by two people. But before we discuss their stories, let’s close our eyes. And imagine what comes to our minds. When we say, research pioneers. Did you actually think of a scientist or a doctor dressed in white lab coats and working in a hospital or a bench side with lots of scientific equipment and test tubes with pipettes or biology equipment? Or did you actually think of an engineer who has tinkering with the tools? Or the computer? Is that what you thought? But what if we told you that in the field of healthcare, there are different set of pioneers, they are the ones who put their neck out to help 1000s And millions of people. They are the ones that most innovators in the traditional sense of the word work for to make their life better to improve their so called conditions. To you guessed it already? Yes, it’s the patient. But are you wondering why I’m referring to these patients as pioneers? Well, that’s the story that we are here to discuss. Our guests today are true pioneers, and are paving the way for new treatments to be developed. But often, the scientists and the innovators that we are, we reduce them to a data point on a graph in a journal manuscript, or conference presentations. But the manner in which these wonderful people become research pioneers are chose to be exactly that is not a part of their choosing, but one that is born out of necessity. And this is where the field of bio electronic medicines has needed these wonderful people to help us to work with them in an effort to help improve their lives.
JoJo 04:43
And I think there are a lot of people who already know your story. But for those of you who are new or are you know, people who haven’t had an opportunity to meet you or hear you speak or read any of your pieces, why don’t you tell us a little bit about you Your history and how you came to be involved in the BCI. Community.
Ian Burkhart 05:05
Certainly, to start, I had a spinal cord injury in June of 2010.
Arun Sridhar 05:15
That’s Ian Burkhart,
Benjamin Stecher 05:17
13 years ago, now I just searched in most of my hand was shaking. And I remember specifically, there was a trip that I took to car Guatemala is at the end of a long day of hiking, and I looked down, I saw that my foot was shaking as well. And it passed pretty quickly and didn’t realise that anything was wrong at the time.
Arun Sridhar 05:33
That’s Benjamin Stecher. Those are the two people that we are going to hear from today. Let’s go back to Ian Burkhart.
Ian Burkhart 05:46
I was on vacation with some friends and we’re swimming in the ocean. And I dove out. And a wave pushed me into a sandbar. That left me with a fracture to C5 level of injury. And it was a really interesting experience, to say the least because I was the first person with a spinal cord injury that I had ever met. So I really had no idea what to expect what my life was going to be like. I went through some rehabilitation and kind of got back to, to living, you know, a adapted level of life. But I wasn’t ready to kind of settle and be be at that level for the rest of my life. I knew that, you know, because I was injured at the age of 19, that I had a whole life ahead of me. And that something would be coming along within my lifetime to really improve quality of life
Arun Sridhar 07:00
That hope, that resolve made in and patients like Ian, to keep looking for solutions in a way that’s much more resolute than what any scientist or innovator would do.
Ian Burkhart 07:13
So I kept asking all of my doctors and therapists at Ohio State, what can I look forward to? Is there anything that I can do, I was looking on online at different research that was going on just to really stay informed and understand what I can look forward to what I can have hoped for. And that was when there was a project already going on at Ohio State that I fit kind of all the criteria for. So one of my doctors called me to come down and check out their muscle stimulation device that they had for hand grasp. And I started with that. And then they explained to me that the real goal was to have me be able to control this myself instead of a technician clicking on a computer. So it was using the brain computer interface implant. That way I would think about moving my hand and the stimulation would make my handbook. And I was really excited about that, because I knew after seeing the stimulation and using some functional electrical stimulation previously, throughout my therapy, I knew that you know, this was a way to kind of bypass the broken spinal cord and activate the muscles directly. So then, if I had control over that, I could do a lot more and be a lot more independent in my everyday life.
Arun Sridhar 08:43
So Ian had what is referred to as a high cervical spinal cord injury, that paralysed parts of his body neck down. So now let’s pan over to Benjamin, our joint guest, who noticed that his hands and legs were shaking while he was on a hike.
Benjamin Stecher 08:59
13 years ago, now I started to notice that my hand was shaking. And I remember specifically there was a trip that I took to car Guatemala is at the end of a long day of hiking, and I looked down I saw that my foot was shaking as well. And but it passed pretty quickly. And I didn’t realise that anything was wrong at the time. But looking back, I now can see that those are the first signs that something was really wrong, even my brain for speeding four years later, and I was at the lunch table I think with my aunt my MD herself. And she saw my hand shaking as she referred me to movements or specialists who diagnosed me with Parkinson’s disease. That was about eight and a half years ago. Now it was nine years ago. And ever since then, I’ve been on a kind of journey trying to figure this thing out for myself, trying to understand what is actually happening in my brain the realities of this disease, and then trying to pick up as much neuroscience as they can along the way.
Arun Sridhar 09:53
Both Ian and Benjamin were young. He and was a teenager just 19 years old. and Benjamin was in his early 30s.
Ian Burkhart 10:02
Yeah, I mean, it was something that I would have never imagined that I would, you know, need to deal with in my lifetime to go from being a completely independent college student living on my own to now, I needed help with going to the bathroom, feeding myself getting dressed, getting up, and pretty much doing, you know, 95% of what I needed to do within a day, I now needed assistance from that, throughout some, some rehab, I was able to get back to the point where I was able to feed myself, but I couldn’t really do any cooking, I’d still need someone to help cut up my food and things like that. So it’s still very dependent on other people. And, you know, I got used to the fact that I was in a wheelchair, and that was how I was getting around and for my mobility, but the hardest thing for me was not having use of my hands, I had mobility through my shoulders, and arms to kind of move my hands around. But I couldn’t do anything with my individual fingers are my wrist. So I knew that if I could restore any bit of function there, that would really allow me to be more independent. And that’s what really motivated me to look for any project I could that would restore some of that hand function.
Arun Sridhar 11:37
And volunteering for a clinical study, when you’re dealing with a life modifying event, like what Ian had, because of his accident, is something that we cannot even think of, but it’s the will to get better, and not accept the force situation. That is admirable. And I don’t think any amount of appreciation will do any justice to that spirit. Here is Ian describing that journey.
Ian Burkhart 12:03
Yeah, it really was a lot of a time commitment. And a big challenge. I mean, it started even before the brain implant, but we’re doing some kind of pre op, MRI testing. And, you know, someone asked you to think about moving your hand. Well, you know, prior to my spinal cord injury, I never had to, it just moved. I mean, yes, at some point in my life, I was learning how to move my body for the first time, but I don’t have any recollection of that. And so that was the biggest challenge is really understanding, okay, what am I actually trying to do to make those muscles move. So I had to learn kind of the language that the muscles in the body are speaking. And it was extremely challenging, especially when, you know, if I’m just sitting there looking at my hand and thinking about something moving, and then I don’t get any feedback of it moving well, am I thinking about it right? Or is it? Is it not working or what’s going on? So once we had the system kind of paired together and starting to work, as soon as I got any feedback, I was able to then kind of tweak my thinking a little bit more to, to make sure that okay, yeah, I am thinking about it the right way, I just need to concentrate a little bit harder, and whatnot, but it was something that I really had to concentrate a lot on. In the beginning, I would leave you know, we’d have sessions two to three days a week. And I would leave one of those sessions just completely drained and, you know, mentally fatigued, to the point where I didn’t really want to do anything else because I had spent so much time just concentrating on individual finger movement or opening and closing my hand.
Arun Sridhar 14:00
Are you curious about Benjamin story?
Benjamin Stecher 14:03
So yeah, so I was 29 when I was diagnosed, I was living working in China’s trying to build a big education company out there that was based in Shanghai but I was on the road constantly going from one city to the next in China. And but I soon realised because of a lot of the learning that I was doing, and a lot of the research that I was taking part in that China was not gonna be a great place for me to live long term. So at 31 or 32 I think I decided to come home and really delve into this full time. Actually, part of the impetus was the birth of my nephew as well. So that also prompted me to come on when I did, but I’ve since then he’s now almost five and a half as I can time it directly based on his his life really, which is kind of neat thing before we Yeah, but anyways, so for the past six years, I’ve travelled the world. I’ve gone to well over probably 100 different medical labs or not Companies are places that are patient organisations, just places that have some kind of expertise in Parkinson’s diseases. And I’ve tried to learn as much as I can from some of the world’s greatest minds in this field. However, I did learn along the way that some good things in the bad things, obviously. But I really came to grapple with just how little we really know about the brain and neuroscience in general. And that was not an easy thing to like, kind of really take it to heart. But it was important along the way. I also kind of realised, though, that the people who were best suited to help me and the people that were kind of best positioned to give me something to offer me something very tangible. All right here in my hometown in Toronto, I travelled the world. But in the end, I realised that I didn’t have to go very far to get the treatment that I needed. However, along the way, kind of an advocate emails from this specific community. And now, you know, at the beginning, I was getting like a sending, like 10 emails for every one that I got back to the experts.
Arun Sridhar 16:02
So Benjamin and Ian were both very keen on knowing more, and an understanding what needed to be done to get themselves to a position of helping themselves both sought out people in their local medical centres. And in the case of Ian, it was more easier in comes from Columbus, Ohio. So he went straight to the Ohio State University, and sought help from his physician and prodded them, and willed them into looking for options to help him. On the other hand, Benjamin travelled to many different places, and in the end, found help locally at Toronto, his hometown. But before we go any further, let’s understand a bit about the standard of care that these two gentlemen experienced for the conditions. You already heard from Ian, our guests with spinal cord injury, that he was offered rehab. And with that, he was able to get some function until the shoulder, but dexterity in his hands and fingers were absent. Here to see and again,
Ian Burkhart 17:07
Yeah, after trying the muscle stimulation for a while, that was when the idea of the brain computer interface was introduced to me. And, you know, prior to that, heard of the brain gate projects that have been done at other institutions. But I didn’t really know what all involved. You know, and Dr. Rezai explained things to me. Pretty matter of fact, in the sense that, yes, we will be placing a array on the surface of your brain that will allow us to record the signals for when you’re thinking about moving your hand. And the computer will be able to translate that into something that the stimulation can understand to trigger it being on and off as a way to bridge the damaged spinal cord. And, you know, that was something that really was exciting to me, it was challenging, you know, to wrap my head around it, because I had no this space at all. But I felt very comfortable with the whole team. You know, at that point, it was Chad valtonen, who was working at Patel, who was really leading the muscle stimulation and the algorithms side. And Dr. reside at Ohio State, I felt really comfortable in the fact that it would be safe for me to participate in this and do the surgery, I can a joke sometimes that this is a more simple brain surgery than what Dr. Rezai was doing, you know, routinely with deep brain stimulation. So that put me a little bit at ease. And then I knew that, you know, everything that Chad and his team were doing with the muscles stimulation and an algorithms I didn’t want to work, because I didn’t want to, you know, have the surgery and then the system not actually be able to, to work. So I felt really comfortable that there was a good chance for success. And, you know, at the end of the day, I was just really glad to have that opportunity. And I felt like I I almost had to say yes, because you know, there’s another me in a different part of the country that didn’t have this opportunity. But it’s really hoping for, you know, this type of science to progress and be able to help individuals with spinal cord injuries in the future. For me, I did receive quite a bit of pushback from some family and friends. And rightfully so, because the treatment of care kind of the the current treatment of care at the time of my spinal cord injury would not have involved anything of the sorts of having a brain computer interface. put in place. You know, and that was the big reservation for my family and friends that said, you know, you just went through this huge life changing accident a couple years ago, are you sure you want to subject yourself to a brain surgery that you don’t need. And it had no guarantee that it would improve my quality of life, most likely, it really wouldn’t, because being a clinical trial was only something I would have access to, inside the lab. And, you know, so that that was a big push back. But I didn’t see it as that big of a challenge, because I knew, after meeting with the team that I was in good hands, and that we had a high probability of success. As well, as I really knew that, you know, this was a good tipping point for the future to really get this type of technology into the hands of more people if it was, you know, successful. So I was able to kind of settle all those risks with just knowing that it was worth it to me, because I could potentially help myself and others down the road,
JoJo 21:20
you’re presented with the opportunity, and to get in an implant, and you decide to move forward, I’m sure that wasn’t an easy decision. But you know, your commitment to it is really impressive. And I’m sure so many people are grateful for it. But it’s not like they placed the electrode hooked everything up and turned on a machine and everything worked. All of a sudden, there was a lot of training that went involved. So can you kind of walk us through what the what the progression was. And, and I know, I mean, you were a full time job. participating in research,
21:59
There was a great evolution across, you know, the system from how it works from when I first started to, you know, when we got a couple of years in, because, like I mentioned earlier, it was challenging for me to think about opening and closing my hands, or, or moving individual finger. But once I got a little bit of that feedback, it helped me understand what I was doing, and if I was thinking about it the right way. So that’s kind of me updating my kind of internal algorithm in my brain of how I’m controlling this. But at the same time, the decoders and the algorithm on the computer that’s processing all that information was getting updated. So it was kind of a cat and mouse game where I would, I might try something, and it would work and kind of or the decoder would work a little bit better in one way, kind of figuring out how we can really be at the same level to be, you know, as accurate as possible. And, you know, it got to the point where, after some time of practice of me, you know, understanding exactly what I needed to think about, I didn’t have to concentrate as hard, you know, to do something simple, like opening and closing my hand. If it was something that was I was holding on to object, I still had to concentrate pretty hard. Because I didn’t have the feedback coming back into my body that I was touching it from the lack of sensation. So I had to really rely on that visual sense to make sure that I still had a grip on the object. But it was really kind of that balancing act of what am I changing? What is the computer changing? And how is that going to, you know, work the best to have the highest level of accuracy.
JoJo 23:53
I know you went through a lot of tasks that we take for granted every day, the credit the pinch, for the credit card, swipe the stirring of the straw. The story that I always use when people ask what I do I say, Well, I work in neurotech ngulia. What’s that? And like, one of the coolest things that that I’ve had a chance to be close to is this, this gentleman with a brain computer interface who has been paralysed and has had such limited function available? He’s now able to play guitar hero with single digit dexterity, and everybody just kind of goes, Oh, that’s so cool. So but those are, like I said, those those movements are things that we take for granted. We don’t we don’t think about it. It just happens, like you said, prior to your injury. What was what was the coolest thing that you were able to achieve?
Ian Burkhart 24:46
Yeah, so the Guitar Hero task I think was really exciting because it was a little bit more fun. But I don’t necessarily think it was the coolest task that we were able to achieve. I was a lot more focused on kind of those practical things that I could easily see would translate to outside of the lab. I liked playing guitar hero because it was fun, it was challenging and entertaining. And it really showed that we’re able to do individual finger flexion. Also, it showed that, you know, the system was able to work quick enough so that I had that kind of sense of agency and control to hit the notes as they’re coming down the screen. But I really enjoyed just the task of where I’m reaching out picking up a bottle, pouring what’s in that bottle, sitting the bottle back down and then using a smaller grip to stir what we poured out of that bottle. Because that translated to me into my everyday life. Okay, now I can go get myself a drink, I can be able to pick up you know, a small package or a piece of paper with that smaller grip. And to me that translates into independence, which is paramount for me and anyone after a spinal cord injury.
Arun Sridhar 26:13
Now let’s move to Benjamin. As you know, Benjamin was diagnosed with early onset Parkinson’s in his early 30s. Let’s listen to his patient journey.
26:23
So the standard of care. I think I have it right behind me actually. See, you can see there. It’s levadopa. carbidopa essentially, it’s like a little yellow pill that I had to take before a signum was 600 milligrammes per day, I’m down to like 75 milligrammes now, but every two – three hours, I have to pop one of those yellow pills. But then, then the journey would really begin for me on that day, because what happens is you have these fluctuating on off periods, because it halflife is like 90 minutes limit, I think. So what that means is, these spikes, these crazy spikes, it’s crazy drop offs fluctuated the entire day. And my whole day was based on trying to walk ride those waves. And as my disease progressed, and as things carried on, those awful conditions became worse and worse and worse and more and more debilitating as well. But that did in practical terms with it, they only gave me like an hour window, basically, where I was like in that sweet spot, kind of between on and off periods. And remember, this is like throughout the day, as well. So it wasn’t just like in our own time. 20 minutes here, 10 minutes here, five minutes here, wherever it might be, where it actually be able to be productive as well.
Arun Sridhar 27:35
Unlucky, and Benjamin wasn’t going to give up. He was curious to understand why these fluctuations of dopamine mimic levodopa was happening.
Benjamin Stecher 27:45
And then I would go around and ask people like experts like okay, why is this the case? And why don’t we have anything better? Yes. And they just kind of throw up their hands and say, you know, I don’t know. Or they say like, or because, I mean, it’s a six year old drug. It was discovered in the 1960s. It was first brought to the mass market in 1960s. And we don’t really have anything better since except for dBs, which was approved in the late 90s for Parkinson’s disease and other conditions as well. However, it was not the only thing that I was grappling with the time either I had other options available to me because of kind of my standing in this community. This gene therapy stem cell therapy, a new kind of infusion pump for levodopa and focus ultrasound as well. So then I had the kind of almost impossible task of trying to figure out which of those five or six therapies was gonna be the best one for me specifically. And one thing I came to realise about Parkinson’s disease is that it’s very much a myth. There’s no such thing called Parkinson’s disease, nothing that I can point to my brain and say, oh, yeah, that’s Parkinson’s. Because every person who I’ve ever seen and every patient who I’ve ever come across experiences a little bit differently. The symptoms manifest themselves slightly differently in every person as well. So it’s kind of a misnomer, in some ways to call it a disease. However, I did come to know this one man, his name is Alberto Espay. Over at the University of Cincinnati, and working with him, I went down to Cincinnati from six months, this was before the pandemic and then the pandemic struck and that all went to hell, but whatever. It’s a story for another time, I guess. But through him, I was able to kind of pinpointed isolate more specifically what I had and working with my own doctor here, Dr. Alfonso Fasano, my opinion the two of the best in the whole world and together kind of came through it was kind of came to a realisation that what I have something called nigrostriatal degeneration, which is basically a very specific form of Parkinson’s. It’s kind of like the classical typical form of the disease. However, for now, anyways, it’s been basically just isolated the motor segments of my brain, and it’s also why I’m such like a perfect candidate for DBS as well. So that’s how I kind of roundabout way I came to actually deciding that DBS was the right thing for me. And then, on top of all that was the adaptive stuff and this new cool technology as well. But again, I can’t say too much about that right at this moment.
Arun Sridhar 30:04
I’m sure that sounded like fun to you, the non Parkinsonian individual who leads a relatively normal life. And you don’t have to deal with issues like what Benjamin has to deal with. And as a result, the support structure has become incredibly important for people like Benjamin. You heard about Ian’s experience and decision making, and how he was able to talk through his options that he had with his family. Let’s listen to Benjamin. And Benjamin highlighted some interesting side effects. However unintended, it might be, speaks to how researchers in the future need to optimise the manner in which they stimulate the brain region for Parkinson’s treatment.
JoJo 30:55
See, so you’re you’re both you’re both have put yourself sought out and put yourselves in this sweet spot of research and, and your conditions at the time have have made you ideal candidates for your respective therapies. So you, you were able to go through the process and come to the decision that this was the right move for you. I’m sure that there was a lot of input feedback, concern, maybe some pushback from family and friends. I mean, this sounds to a lot of people who haven’t immerse yourself themselves in this area. Putting chips in your brain sounds like a crazy idea. I mean, you know, if you’re not thinking about it, it just it sounds really foreign. And so were there were there any pushback in your lives? Or was it just smooth sailing, and you had support all around?
Benjamin Stecher 31:51
So it was relatively smooth for me. I mean, I, I’ve always had like a very good family environment to come home to. My parents have always been very supportive of everything that I’ve done throughout my life, however, and like, I have, like a lot of medical people in my family as well that I could count on, like, ask questions, too. But still, nobody really understood the brain or neuroscience at all, nobody that I knew anyway, or that I was close to family. And along the way, ever since my procedure, there’s been like weird things that have happened as well. Weird, like personality torques have come up their tics and come up with me. And in some subtle ways, my personality has changed in ways that were unexpected. However, as much as I tried to prepare everyone around me to expect the unexpected, you know, you never know exactly that’s going to be like so how do you actually prepare for that at the end of the day. And I’m happy to talk about those as well, it seems like, I’ve gone through some episodes of some people call mania, some manic episodes as well. Some things so experienced from time to time, here and there. Whenever we like, whenever I go back to the clinic, usually, and have to tweak something. I usually get that like rush of like happiness and euphoria that often elation that comes with mania often. And as a result, you know, I’ve had that clinical label put on
Arun Sridhar 33:07
Euphoria due to Mania, is that what you heard too. Let’s hear more.
33:13
So there’s definitely an arrogance. I mean, it’s hard for me to describe it accurately myself and be objective about this whole thing, because I can’t have to try and get outside of myself, and then get back and try to observe myself to the eyes of others. But whenever I try and do that, I can see why it comes off as being arrogant or dogmatic sometimes, or just the sense that I kind of know better than other people as well, but what’s happening in my brain. So it was very much a bet that me and my neurologist made and some other doctors that I work with, that this was the right thing for me, because we knew what was wrong. We thought we knew what was wrong. We weren’t for sure. No one could tell me for sure what was wrong with me, the only way we would actually know is once we turn on this adaptive device. And then we would see if there’s benefits or not compared to the either used to be or just compared to the standard line of therapy. And so far, you know, all of our bets were proven right? I mean, thus far, we’re pretty confident, I think that we know now that adaptive devious thing for me, and we know why as well. I’ve written about that for so I think it contains like pretty openly that. I can talk a little bit about the neuroscience if you want me to.
Arun Sridhar 34:19
And the beauty of it all is the ability of Benjamin to work with his neurologist and try to work with his doctor as a team, even when they didn’t have an answer. And if you think about this, that’s remarkable. We in our minds, probably have a stereotype that most patients will look for ways to get better, and we’ll spend all the time online and in forums to get the help that they need, and assess options. But the story of Ian and Benjamin reveals a deeper human urge the urge to push the boundaries of science for themselves as subjects in a trial. but also as researchers asking questions, prodding their physicians to help push for answers to those questions, that they don’t have an answer themselves, while trying to subject themselves to the unknown. It’s almost the thrill of a sports person who will subject themselves to the unknown adventure without knowing the outcome. But in this case, it was not of design, but out of profound curiosity of a situation that was forced on them. And for us, that’s why we call the research pioneers. Here is Benjamin again, we asked Benjamin to explain to us as he understood what Deep Brain Stimulation means. And more importantly, he was part of maytronics clinical trial for a technology called adaptive brain stimulation technology. So instead of us trying to explain it, let’s ask the research pioneer himself to explain it to us.
Benjamin Stecher 36:03
So actually, to me, it’s simple though, it’s really, I think of my cells, my brain and the cells and other people’s brains. Like any other living thing on this earth, to survive everything to be able to communicate, meaning they have to be able to send signals out into the world and receive them back and have their behaviour change based on those signals that they receive into their, you know, through their senses or whatever, however, they get those signals. Now. That’s why I think adaptive DVS is better than the continuous units consist continuous DBS was very much just a dumb machine. They’re just sending these electrical pulses through my brain at a steady rate at a fixed rate as well. So there’s no adaption going on. However, everything else in my brain is adapting to its environment, every cell in my brain is responding and giving feedback as well to its surrounding cells. Suddenly, this is continuously the under the old settings under the continuous TV settings, there’s this thing implanted into its environment, and it’s not actually responding anymore, either. It’s just kind of sending out these constant signals. However, now it’s actually responding to the signals that it gets from my brain, it’s responding for the most part to the beta waves it’s receiving, and then it’s able to, you know, adapt accordingly. However, that’s still not the preferred method, I think going forward, I think in the future, be a little way away. But we’ll need something that’s more physiologically like a neuron, so has to be much thinner, and much more and much more arborization will have to be able to like, connect many more things as well. So right now, it’s basically just like a straws to straws in my brain. But at the end of the day, what we really need is something that looks and feels more like, like the rest of the environment in the brain, which I think will come along at some point, once we have these graphing technologies. And once those have progressed to a point where they’re, we’re able to actually implant them in people. Because, um, yeah, then we’ll look and feel much more like a neuron and then hopefully, at that point as well, if we eat combined with the adaptive system. So here’s what I envision features that, like the STN, for example, which is where mine is subthalamic nucleus, which is deep inside my basal ganglia, it looks almost like an all of our little walnut broken, that kind of shape. It’s much smaller, it’s about six millimetres wide. What will happen in future is we’ll stick one of these electrodes onto the surface of it. And then inside the electrode itself, we graphing tips that will be able to innovate, which means it’ll be able to like extend through into the target area. However, each one will be guided by its own nanorobots as well are guided by some kind of machine learning algorithm or guided by something or other. And so like, it literally authorised through the area through the target area, and spread evenly to the IRS, it’s actually needed. Because right now, it’s still kind of a blunt instrument in my brain, even though it’s kind of adapting to some of the signals that it’s getting anyways, there’s a lot more signals that could be damaging one, and two, it’s just like, it’s like a straw, that’s puncturing the whole area. And what we really need is something that can look and feel, again, like broken record, but to look and feel much more like a neuron if it’s ever going to actually do what a neuron is supposed to do, or what some of the things are supposed to do anyways.
JoJo 39:11
So we think I really liked the adaptive DBS as a differentiator and Ian,. And I think, too, when we get into restoring sense of touch into into programmes like yours, that will be the the parallel version of closing the loop, they’re getting that feedback. So instead of the Benjamin, as you call them, the dumb devices where it’s one direction is one person standing up at the front of the room giving a speech and with the adaptive DBS and with restoring sensation. You’re making that more of a two way conversation, although today where we are with a limited vocabulary. And as those technologies improve and become more fine tuned like the neuronal model, it’ll be a conversation with a very broad vocabulary available between the speakers. So I think that’s pretty cool. One thing I want to find out about both of you is you’ve chosen not only to participate in clinical trials, but you’re both very outspoken advocates for your respective conditions and diseases and, and patient outreach, advocating for clinical trials advocating for support for clinical trial participants, what what are you each working on in those areas. And, Ian, I’ll start with you,
Ian Burkhart 40:34
I really saw the great responsibility and opportunity that I had after being a part of this clinical trial. Because it was an n of one study, I wanted to be able to share my experience as much as possible. And that only furthered the kind of advocacy that I was already doing. For, you know, helping individuals with spinal cord injuries from being a peer mentor, and being involved in local kind of support groups. To the point where, you know, now I’m working with the North American spinal cord injury consortium, as their vice president. And we work on really involving stakeholders in research to make sure that the research that’s done is going to benefit us, making sure that there’s individuals with lived experience kind of in the room where these changes are happening. So that, you know, at the end of the day, the research is getting the best kind of bang for their buck, to make sure that, you know, there’s going to be changes that are, are positive, and they’ll be actually adapted, or adopted by the community, to make sure that it’s going to improve their quality of life versus just being something that, you know, the general population might think, individuals with spinal cord injuries one.
Benjamin Stecher 42:11
In class, myriads are a question that you because in the Parkinson’s community, there’s a lot of stigma around this disease. And it’s usually you know, an older person’s disease, which is why I, like me and others in my community, especially the young onset community, with a very difficult time having our voices heard by pharma, by government, by everyone really involved in the field. I’m wondering like, what advice you might have to us or like, or what of your experience has been like, Have you actually gotten your foot in the door? And have you actually gotten people to actually listen to you, and start taking you a little bit more seriously. But one of the things I want to mention, I don’t know if it’s the case, in spinal cord injuries as much, although it might be that in Parkinson’s is also the cognitive decline that a lot of people experience, however, that’s less prevalent in the young onset community. And something it’s not very well known or studied, really. So again, same question is about how did you get your voices heard? How do you overcome some of those barriers or challenges that you face?
Ian Burkhart 43:05
Yeah, I think there’s a big challenge, you know, within the community itself, of spinal cord injuries, because it’s not a jump, degenerative disease, you know, you kind of you have your, your spinal cord injury, you go through rehabilitation, and you’re kind of just now into this new normal, and your life can continue just fine. You know, the secondary complications and things like that aren’t nearly as bad as they used to, because we’re, you know, just getting proper medical care. There’s some things that go along with, you know, ageing with a spinal cord injury, that are a little bit more challenging than the general population, but from a large stance, you know, your life isn’t going to continue to get worse. So there’s a lot of people that are just fine with it, and don’t want to challenge that status quo, to improve their quality of life anymore. As long as it’s not, you know, getting worse and worse, you know, each year each week or month. So I think some of the things that we’ve been able to do to combat that is really leveraging all of the technology that’s now available into the point where, you know, you can show that, hey, individuals with spinal cord injuries can live much longer lifespans. But with that, you need to be able to stay healthier, you need to be able to do more for yourself. And that has helped to get the community a little bit more involved. But, you know, honestly, I think there’s just groups of people who are more interested in you know, wanting to improve their quality of life versus being okay with where they’re at. And kind of settling with their, their condition or Whatever their circumstances may be,
Benjamin Stecher 45:02
yeah, unfortunately, there’s so much apathy in Parkinson’s fields or Alzheimer’s or any of these neurodegenerative diseases where people just feel like it’s a death sentence or they just kind of succumb to the whole disease themselves. Glad to hear that it’s not gonna sound like it’s quite as prevalent in other disease areas or, or brain spinal cord stimulation injuries, but, um, something that’s just very difficult for me as like an advocate to try and instil in other people, like, how do you get people to something so apathetic about their conditions and get them to see that maybe that there’s, you know, a rainbow around the corner, it’s my own lived experience, at the end of the day will be like the thing that Mike probably other people, but I also know that, you know, these, these, this is a very expensive procedure that I went through, it’s not gonna be available to everybody. Also, because I’m Canadian, that’s a big part of the reason why it was available to me. And also, because I’m such like a vocal advocate. So if you’re not in the position that I’m in, it’s, frankly, unaffordable for 99.9999 repeating percent of people. So I don’t even know if I can be an example, in that sense as well, for others, but you know, what I’ll do
Ian Burkhart 46:05
I hear exactly what you’re saying. But in German, you know, I mean, the treatment that I was able to get, I was really looking, you know, looking for anything, because my insurance cut off the amount of care that I was already receiving, said, Okay, well, you’ve kind of made all the progress we think someone in your condition is going to make. So go live your life, tough luck. And I was just looking for a little bit more. And, you know, I was luckily in the right place at the right time to be involved in this study. But at the same time, I think that, you know, if you have that opportunity to, to use use a device or to get implanted with anything, go for it, because you’re only going to help the scientific community and learn more about how these devices work what, you know, specific indications they can be used for. And overall, that’s going to be able to grow the market in, you know, hopefully, drive down that price, or open up reimbursement models so that more people have access to these types of care.
Benjamin Stecher 47:16
Yeah, and I agree, sorry, for taking over to do an AMA, I have another question that I’d love to ask. I agree completely there. But this hypothesis, like the scientific community, sometimes we’re not the easiest people to work with. For one. They’re not usually the most outspoken individuals, they’re not always the most talkative. or, frankly, it’s kind of a sensitive subject. But there are people who have their own interests as well as the humans like everybody else. And that’s why we have things like added cam and add, which is their latest drug Biogen. And why it’s such a tournament swear it was like, Yeah, I mean, those vested interests, like everyone comes with these preconceived notions into Xirius. And oftentimes, people who are actually positioned to make change, they’re the ones that study this for two years, or three years or so they still use the same textbooks from 30 or 40 years ago. And they, they have a hard time when keeping up to date with everything that’s going on in today’s research and to opening the doors for younger scientists or younger researchers, to maybe people who have like new ideas that can actually make a difference. So I’m wondering if you have any insight there as to how actually to push the levers or to like, get people to put their egos aside and get us all towards really common good.
Ian Burkhart 48:33
Benjamin, I would definitely agree, there’s a lot of times where you have a lot of resistance in that old guard of, you know, the individuals that have been doing research in these fields for a long time. Have really challenging the status quo and changing things that but at the same time, you know, if they were right, then they shouldn’t even be studying things anymore, because they would have it all figured out. So I think one of the things that the North American spinal cord injury consortium does really well, is getting in with early career researchers to make sure that they understand the need for involving individuals with lived experience in their research, to make sure that, you know, these are going to be problems that you know, are severe enough to really need to be studied versus something that, you know, the community may not actually care about. So, I really think that that’s one way we’ve been able to, to challenge that a little bit more, but really, just with anyone, you know, asking, you know, why is something done that way? And, you know, why, what if we did this, what if we did that, but you do hit a lot of resistance, especially when you’re up against kind of some of those, those large institutions in the spinal cord injury field, you know, we don’t really have Have any pharmaceuticals that were that are used. So there’s really not that big pushback of, oh, we we develop this drug that costs a lot of money to develop, but we can have people who stay on it for the rest of their lives, that, that makes us a lot of money. So there’s, there’s a big challenge and that I can see. But, you know, I think it’s really just keeping, keeping your foot down and pushing on improving the level of care and what can improve the quality of life for someone with the disability.
Benjamin Stecher 50:37
Yeah, and on that, know that that’s a great comment to make. And then something else I’d like to add on. Something else I’d love to add on top of that is just that, it’s neat to actually bring in more people from outside the field as well, and to bring in specialists of all different kinds into these fields as well, because as George was just alluding to, there’s never going to be a cure for these diseases, until we actually figure out what’s going on deep inside of a person’s brain for one. And that’s gonna take years and decades and decades and decades and decades, until we really get there. I think, because of the complexity of the organ, we can’t access tissue and all sorts of other reasons. So until then, we to bring in as many disciplines as possible, for example, I don’t want to endorse this product, this company in any way. But I think they’ve made a wonderful product for physiotherapy in particular, every day, now I put on these things, and I do about 12 rounds. VR boxing is a quest to device on right now. But it’s really an amazing tool. And I see a lot of potential to actually bring computer science majors into this field now to help people like myself to actually get up and do something now. Because one of the biggest problems people with Parkinson’s have is that apathy that I mentioned before, and what this can do is actually drive people away, because there’s only one thing that is disease modifying and one thing that’s been improved disease modifying in the whole field of Parkinson’s, and that’s exercise. However, getting like an older, stubborn man to exercise can be very tricky thing vineyards ever tried to do that before, it’s very difficult to actually get somebody to actually take the time to exercise for themselves. But you know, maybe if you can entice them in other ways, or give them different kinds of exercise modalities, like this one, who knows, maybe that’ll be the trick that actually gets more people to do the things that we know are beneficial for everybody.
Arun Sridhar 52:25
And finally, we want to let you go with these two messages, a stern message of life from both Ian and Benjamin. And hopefully, it helps us understand a bit more deeper as to how much these individuals contribute to making their lives and others to do more, and to feel better, and to live a life that is fulfilling, while appreciating and coming to terms with what they have to deal with. Be it a twist of fate, or destiny, or, frankly, genetic mutations.
Ian Burkhart 52:59
I think there’s kind of two big takeaways there. You know, for me, I never wanted my injury to define my life, at least early on. And now I look back and think how, you know, stupid that was because, you know, it’s something that is so defining in my life, that and, you know, having my eyes open to this field is really something that I have to be involved with now, because I don’t really have a choice, I saw a quote one time that I really, you know, resonated with and it was, I’m not a disability advocate, because I want to be I’m a disability advocate, because I have to be and, you know, that highlights the fact that there’s not enough people that understand the challenges the individual with disabilities go through on a day to day basis to really change things. So you need those who are living it to, to speak louder and speak up and and share their experiences. The other side of you know, being having gone through the research that I was able to participate in it really didn’t change me because like I said earlier, I kind of tried to compartmentalise you know, when I had use of my hand through the device in the lab to when I would be disconnected and go home, but it did change, you know, other aspects of my life as far as being able to participate and things like this, but also, you know, physically allowed me to essentially have a lot more occupational therapy and physical therapy of, you know, just moving blocks around on a table and learning how to move the other muscles. that I had to, you know, in my shoulder and things like that, in order to move my hand. So I’ve gained a lot more coordination there. And that’s enabled me to do more things on my own and, and live, you know, a little bit more independently than I was able to, you know, if I wasn’t involved in the trial.
Benjamin Stecher 55:21
Yeah, very similar experience, I would say, well, similar or different, because it’s, you know, the brain is very complicated thing. And each person kind of gets affected by it in different ways. But, um, yeah, I would say that also, just kind of tack on Ian’s point there that are every kind of brain disease community is very different as well. However, there’s shared lessons across the groups that I’m sure we can all learn from, I’m sure that there are things that we could be doing better together than we could be doing in silos right now. And it’s a mistake on our part, I think, to kind of continue the same silos that kind of pre ordained for us by the neuroscientists. Or by the neurologist, I should say, as well. Why am I a Parkinson’s disease advocate, when that word for one doesn’t have a lot of meaning for me, and to somebody whose experiences like Ian might be more resonant with me, then, you know, the typical 65 year old person with Parkinson’s who gets diagnosed with Parkinson’s, I should say. So, yeah, just on that, I guess I just wanted to thank you, Ian, for sharing for sharing your story as well. And, yeah, let’s see, maybe in the future, hopefully, by building these bridges, and by connecting these kinds of disparate groups together, we can come up with better solutions for everybody, and at the end of the day, help more people live a better life or help the next generation at least, live a better life than we were able to.
JoJo 56:41
I’ll tell you one thing that that I have learned, and I have more connection to the BCI community rather than the DBS field and my Parkinson’s experiences years ago, but one of the things and we do benefit from this field having a strong injection of youth, and it’s a it’s a younger field than DBS in general. So there’s, there’s that infusion of invigoration. But the other thing that I find very important, I try and do this as much as possible, important and bears the brunt of it, because I’m always like, Hey, Ian, you want to come talk to this group for me. But having that connection, so many, especially the young researchers don’t have the ability to be in touch with a person who’s actually benefited from these technologies, and having that inspiration of not only what you guys have done, but then also listening to what matters to you. So like, instead, playing guitar hero. Yeah, that was a media blitz, and that was great. But that’s not what is functionally important to you. Pouring a beer, on the other hand, has far more immediate need and benefit. So it’s engaging with the patient pioneers and the research pioneers like like you guys, is inspirational, not only to reconnect, why are you doing this research, but then to also better understand what are the things that matter to you, if we’re not going to cure this whole condition or disease? What can I do to contribute to incremental improvement that matters to us specifically, that’s that’s the tool I use.
Arun Sridhar 58:32
So that’s the end of the episode. Thanks for listening. All materials presented in this podcast is a property of scraps, and should only be reproduced after permission from our own Shredder, or JoJo Platt. Don’t forget to support us on our donation page of our website, scraps podcast.com. Forward slash donate. The show was created and produced by Arun Sridhar and JoJo plant on Sridhar perform the edits and jointly worked with our sound engineer Mr. Swaminathan ThiruGnanaSambandam for sound design. Finally, a big thanks to all coretec neuro and CirTec medical for supporting this season of Skraps – Bioelectronic medicines