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The Best Ever Podcast with Scott Eblin is your insider’s guide to what it takes to lead at the highest level at work, at home, and in your community. Each week, Scott sits down with remarkable leaders for real, revealing conversations about the mindset shifts, self-management habits, and everyday routines that fuel extraordinary leadership impact. Drawing on his 25 years of experience as a top executive coach, Scott brings a coach’s lens to every episode to help you bridge the gap between intention and action.
Scott - 00:00:10:
Welcome to Best Ever, the show where we explore how effective self-management creates the foundation for positive leadership outcomes. I'm Scott Eblin, and in every episode, I sit down with notable leaders to uncover the routines, mindset shifts, and strategies that have helped them lead at the highest level, and the difference that's made for their organizations, families, and communities. My guest on Best Ever today was recently described as revolutionizing ALS care through fashion, creativity, and an unshakable belief in the power of hope. Today, I'm joined by Dr. Richard Bedlack, the Stuart Hughes and Wendt Distinguished Professor of ALS at Duke University. Rick is the founding director of the Duke ALS program. He's won countless awards for teaching and patient care, including Best Neurology Teacher at Duke, Healthcare Hero, America's Best Doctor, and the American Academy of Neurology's Patient Advocate for the Year. He's a leading researcher in the field of ALS, has conducted numerous clinical trials, and has published more than 160 articles on the disease. Rick is the leader of the International ALS Untangled Program, which utilizes social networking to investigate alternative and off-label treatment options for patients with ALS. He's also the leader of the ALS Reversals Program, which attempts to understand why some people with ALS recover from it, and how to make this happen more often. Rick is also the subject of the new documentary film, Stitching Strength. Rick lives in Durham, North Carolina, with his wife Shelly, two mischievous cats, and a closet full of eye-catching blazers and suits. Dr. Richard Bedlack, thank you so much for joining me on Best Ever. I've been so looking forward to this conversation since I met you at the barbershop about a month ago. And so here's the behind-the-scenes peek at how episodes come together. Rick and I share the same barber. Shout out to Donnie, our barber. And recently, you were his next customer after me. And you were definitely the best-dressed guy in the shop. You were wearing actually the exact blazer you're wearing today. And I want to ask you to model this in just a second. But I was so struck by your jacket. And I asked you about it. And maybe as you model it for us, you could tell us what the backstory is on this jacket.
Dr. Bedlack - 00:02:37:
Yeah, so I do have to say one thing to those who can actually see our pictures. It's important that they understand that you went first with Donnie and he gave you, I think, all of his effort that night. And this is what he was left with. I apologize for the state of my hair.
Scott - 00:02:53:
It grew out really well.
Dr. Bedlack - 00:02:53:
Maybe next time I'll get the appointment in front of you. Yeah. So Scott, I think I told you that fashion has been a big part of my life since I was a kid. I learned when I was really young that if I put on something that was really just crazy, I got almost this sense of a suit of armor that it could keep me positive throughout the day, no matter what I ran into. And so it seemed to rub off on people around me. Instead of wanting to take my lunch money, people on the bus would be like, look at this crazy outfit this kid has. You know, he's what a nut. And it really, as someone who specializes in a disease called ALS, amyotrophic lateral sclerosis, very difficult disease, I've got to find ways to stay positive. I want to as soon as I walk in the room for my patients, I want to put a smile on their face. I want to create that sense of positivity and hope from the minute they see me. And I've been fortunate to collaborate with a lot of designers in the 25 years I've been doing this. This particular designer is a guy that I met on Instagram. He's out in LA. His name is Giovanni Contrada, but he goes by Imp of the Perverse. One-of-a-kind blazers.
Scott - 00:04:05:
Yeah.
Dr. Bedlack - 00:04:05:
This is a linen blazer. You can see they sort of have like raw edges to them. And it's all hand dyed. He's got this strange way of dyeing things where he twists them and then puts them in to dye. Almost like a tie dye. But this one's got one extra component for me, and that is that it has ice cubes.
Scott - 00:04:22:
Got it.
Dr. Bedlack - 00:04:23:
Yeah. The shoulders, I don't know if you can see the back. This was something I asked them to make me last summer because believe it or not, it was the 10 year anniversary of the ice bucket challenge. Which was an event that raised an incredible amount of awareness and a lot of money for research in ALS back in 2014. So I felt like I wanted to do something with fashion to commemorate that. And this is what he made me.
Scott - 00:04:48:
It's truly amazing. And it's even better in person. I'm so glad you wore it today. And so the other thing that happened at the barbershop right after we talked about your jacket, and I didn't know at that point. What you do professionally. And I was slow on the uptake. He's wearing an ice bucket challenge jacket. Maybe I should figure this out. But I don't know if you're wearing them today. Are you wearing any cool rings today?
Dr. Bedlack - 00:05:11:
I don't have any cool rings on today, but I do have a piece of jewelry that's also meaningful, Scott.
Scott - 00:05:15:
What is it?
Dr. Bedlack - 00:05:16:
I try to do a lot of things that are related to my career. So this is a watch. It's really the only nice watch that I have. It's a brand from a company called Tudor. But what makes this unique is it's a Duke blue bezel and face. You probably won't be able to see the detail on the back, but, on the back, there's a blue cornflower. Is a symbol of resilience because like a person with ALS, when you first see a blue cornflower, it looks really fragile. But it's surprisingly tough. It can maintain its beautiful color through the harshest winter. And so for me, it's just a reminder of how tough people with this disease really are. And it also says on the back, it's time to end ALS. So we, the jeweler in Charleston, his family was affected by this and they made a whole series of these watches and we sold them. Tudor gave us a real good price. So we were able to take a percentage and put that into some research that I'm doing on the gut microbiome.
Scott - 00:06:11:
Really good. Maybe we could talk about that in a little bit, the research.
Dr. Bedlack - 00:06:16:
Yeah.
Scott - 00:06:16:
I'm really fascinated by that particular thing with the microbiome.
Dr. Bedlack - 00:06:19:
Sure.
Scott - 00:06:21:
The day that you had the rings on, that was like my next question was you had the skull ring, I think. And it was like incredibly rock and roll. That's what I was like, dude, those are such rock and roll rings. What's up with that? And then you told me what you did for a living. You said something that really stuck with me about how... You need to be when you walk into the room. I mean, you told me that you were talking with the patient, especially on the day of delivering the diagnosis. And like 25 years ago, you were wearing the standard blue blazer khaki uniform that a doctor might wear. And you've shifted from that because... Tell the rest of the story, please.
Dr. Bedlack - 00:07:05:
Yeah. So I saw my first person with this disease, you know, 27 years ago, I guess, when I was still in residency. And I thought it was the most amazing, most terrible thing I'd ever come across. For people who don't know what it is, it's a degenerative disease that affects part of the body called motor neurons. These are kind of like wires that connect the front of your brain where you decide to do stuff to the muscles that carry out your action. So You know what you want to do, but you can't get the signal there. And people who are affected by this, they pretty rapidly lose the ability to walk, feed themselves, dress, eventually speak, swallow, and breathe. And the whole thing typically happens over about two to three years. And so it's absolutely fascinating. It's absolutely horrific. I remember how a patient said she thought of it. She said, it's kind of like this disease has put me in a box. And every day it gets a little smaller and it further restricts what I can do. And I know one day it's going to get so small and tight that it's going to suffocate me. I still get the goosebumps like recounting that description. And so I'll be honest with you. I mean, when I heard the way my attending presented the diagnosis to the patient the first time, He said, you know, we don't know why this happens and there's nothing we can do about it. Just go home and get your affairs in order. And right then that day I said, you know, there's got to be a better way. Like there should be at least things we can do to treat symptoms, to make this person's life better. We should have some research going on here to give people some hope. And so that's the direction I started in. Like, let me learn about all the evidence-based things that I can offer people. And they keep changing. We keep having more stuff. And that's great. But there's still a part of it that is missing, I think, in most clinics, and that is hope. Like early in my career, I remember walking into a room and was just immediately struck by three things. The youngest person i'd ever seen with als he was in his 20s He's surrounded by the greatest number of people I've ever seen. There's at least 15 to 20 people in this room. And this is the craziest looking group of people I've ever seen. They look like they're on their way to a Billy Idol concert, Mohawks and Piercing.
Scott - 00:09:12:
White Wedding.
Dr. Bedlack - 00:09:13:
At to you- Yeah, it was wild. And so, you know, we finished the interview and the exam and we finished, you know, talking about the evidence-based stuff. And I said, I got to ask one question. Like, I'm seeing all these tattoos. These, these swallow tattoos, these black swallows. And I said, what's the deal? Like you all have them. And I see, you know, as the patient, he has a whole sleeve of them. The patient said, well, remember I told you ALS runs in my family. My mom died of it when I was really young. I don't really remember her too well, but she left me a book, and on every page she had drawn one black swallow, and I don't know why. But when I got to be old enough, I decided to get every swallow from that book tattooed on my arm to kind of honor her memory. And then when I started getting sick, we knew what it was. Everyone I know got one of these swallows tattooed on their body to show that we're kind of like in solidarity.
Scott - 00:10:04:
Love it.
Dr. Bedlack - 00:10:05:
We call ourselves the often awesome army, and we're going to keep this positive and hopeful. I said, huh, this is something I have not run into before. I didn't see this modeled by the attending that I was learning from. I hadn't encountered it with any previous patient or family. But they did it, like throughout this whole disease, this whole group kept coming together. Every visit, they'd be there. Every visit, they had these wild stories. They made all this amazing content on social media. And they just buoyed him through a really rough disease. And toward the end, I went to visit him in the hospital. I said, man, you've taught me a lesson I never want to forget. Can I be in your army? Can I get one of those tattoos? I got one right here on my left wrist, tiny little swallow. He got a kick out of it because he said it was so small, it looked like a freckle. But for me, it was my only tattoo. It will be my only tattoo. And the last thing I used to do is sign a patient's chart and it would pop out of my sleeve and it would say, Sometimes I got to be a person's off an awesome army. So if I haven't already said something positive and hopeful, I got to go back in there and do it. And ever since that day, I've been trying to think about how can I be a better hope giver?
Scott - 00:11:19:
Oh my gosh.
Dr. Bedlack - 00:11:19:
The clothes followed, the accessories followed, the language that I work on followed, all that stuff followed from that one encounter.
Scott - 00:11:27:
I knew that we were going to talk about this, but let's just go with it now. I thought maybe we'd get to it a little bit later. The premise of this show, Best Ever, is to learn from remarkable people and leaders like you about their lessons learned at the intersection of effective self-management and positive leadership outcomes. And I think you kind of live in that space, right? Right between those two things. So a big principle of your self-management, as you just said, is hope and being not just a promoter of hope, but somebody who I think has to, you can only promote it if you live it yourself, right? And, you know, as your attending physician story that you told a little while ago, back when you were young and green and new to all this. That's not the norm. At least it wasn't. When you started. How... What kind of... What kind of support do you get for that approach? What kind of pushback have you gotten? What kind of outcomes do you see as a result of... Taking the hope-based approach to your practice.
Dr. Bedlack - 00:12:38:
Yeah. Yeah. I mean, I'll start with your first statement about, you know, where it comes from. If I had to summarize my thoughts on leadership, it's really one quote. Be the change you want to see. If you want your team... To be positive and proactive and hopeful. Um, you have to be that way. And so I really did a deep dive after that encounter with that patient. And I said, how can I be a more positive, hopeful person? And so the clothes were part of it. But also, I mean, part of it is like, I've got to stay on the cutting edge and not be afraid to talk to patients and families about emerging. You know, products that are exciting, even if they're not FDA approved yet. So at the end of every visit, I mean, we, you know, we always say, okay, let's talk about experimental stuff. Can we find a trial? Can we find an expanded access program? If not, are there things we could buy and try that look exciting? And that... That's a whole other part of this that I think a lot of people are not comfortable with. I think part of it comes down to Are you in a job? Or is this your passion? I mean, either way, I mean, you can have a job as a doctor and be really good at it and practice evidence-based medicine and nobody can critique you. But if you want to take it a step further, especially if you're dealing with a disease where we don't have a way to fix it yet. Then I feel like you need something more. And this really has become my passion. I spend almost every night, every weekend. It's not a nine to five job. I travel around the country with my patients to see them accomplishing incredible things. To this day, probably the most amazing thing I've ever seen. Apologies to my wife. Our wedding was great, but the most amazing thing I've ever seen. When I had a young lady who more than 10 years ago when I was diagnosing her, put up her hand and said, doc. You don't have to worry about boosting my hope. I already know what I'm going to do. I'm going to be the first person with ALS to do a marathon in every one of the 50 states.
Scott - 00:14:40:
Get out of here.
Dr. Bedlack - 00:14:41:
And my point just dropped. And I said, whoa. I said, no, I've never heard of anyone setting such an ambitious goal, but I would love to see this. Please keep me posted. I've got to be there for number 50. And, you know, in my mind, I was thinking it's going to be a long shot. If she gets to number 50, it's probably going to be here. So she called me about six months before and said, Doc, remember you promised you'd come to number 50. It's coming. Prince of Wales Island, Alaska. I got up with my wife. Guess where we're going. We're behind the Prince of Wales Island, Alaska.
Scott - 00:15:13:
Yeah.
Dr. Bedlack - 00:15:13:
To watch this young lady complete her 50th marathon with ALS. Even just talking about it now, I get a jolt of positivity. I've never seen something so amazing. So I tell young people, it's okay. If you want a more balanced life than I have, it's totally fine. But. Don't ever look to what I did and say, well, gosh, you know, he didn't have a work-life balance. He couldn't have been fulfilled. That could not have been more fulfilled. I absolutely love the time that I've had. And I've gotten to see so many incredible things. I've gotten to meet so many incredible people. And I've gotten to be me. Like, this is the authentic me. What I wear, what I work on, who I want to work on it with. These are all things that are just the authentic me. And that's awesome to be able to be comfortable in that space.
Scott - 00:16:03:
I mentioned your wife, Shelly, and your two cats and introducing you. I assume the cats stayed home for Alaska, but Shelly went with you. You said, what's her role been in this journey with you? I mean, clearly she went to Alaska. I guess it's a whole lot more than that.
Dr. Bedlack - 00:16:18:
I mean, I couldn't have done all this without her. I can't imagine a more understanding person as far as... Crazy life that i have all the time i spend on the road all the time that I have the computer out when we're at home. I mean, she's the one who... Is not only understanding, but reminds me like, let's make sure we're getting some nutritious food. Let's make sure we're getting some exercise. Let's make sure we're taking a little break each day and doing something that's totally unrelated. Your work. So yeah, I mean, she's a physician herself. She retired a while ago, and I kind of feel like she's almost my personal life coach to remind me how to stay the healthiest that I can stay while I'm plunging headlong into trying to find a way to end this disease and meanwhile keep people hopeful.
Scott - 00:17:10:
I also like to talk with both my coaching clients and my listeners here on this show about routines that help you be at your best and sustain you and keep you going. You just mentioned nutrition. You mentioned little breaks from the perspective of somebody who's got a very demanding life and you're also a physician. A little bit of nutritional advice. What's working for you and Shelly these days on nutrition?
Dr. Bedlack - 00:17:38:
Yeah, so I was never, like, I would classify myself as a healthy eater. I always felt like it was too much trouble, you know, to go and pick out really good fruits and, you know, make a fruit cup. But I mean, right before I got on with you, this is the remnants of one of Shelly's fruit cups that she makes me every morning. She gets up an hour before I do to slice up fresh fruit that she's picked out. So, I mean, it does take work. To be able to have a healthy lifestyle, but it's worth it. I mean. I feel so much better when I have three square meals with fruits and vegetables included. I mean, the night before clinic, like if I'm going to come in the next day and see. To 20 people with ALS, like It can't be a night where I'm up till midnight. I need eight hours of sleep. That's something I've learned about my body. You know, when it comes to things like alcohol, I mean, I love a good bourbon, but not the night before clinic. I mean, I don't want to have any of that feeling of headache or fatigue. I sometimes get the next morning after a bourbon or two. So I think you learn about your body and what you need. Probably wouldn't have learned all these things if I didn't have Shelly. Sort of being like my life coach saying, you remember how much better you felt today? I made you that great food club to having a McDonald's lunch. Yeah, you're right. I did.
Scott - 00:18:57:
Good data. Yeah.
Dr. Bedlack - 00:18:59:
Yeah.
Scott - 00:19:00:
Yeah. What about, you mentioned little breaks that the two of you take together. What do you, what are the breaks that really you get the most out of?
Dr. Bedlack - 00:19:07:
Yeah, so we'll do things like we have a pool. And so we'll schedule a time. We like to play basketball in the pool. We play around the world or horse. So that takes, you know, an hour. Then we swim laps together. Or if we don't do that, you know, if it's a crappy day, then we'll pick out a show. And so we get hooked on certain shows and we, you know, we say it's going to be an hour of TV together a night with no like devices while we're watching the shows. We're just going to focus on these shows and talk about the shows. Or we might go see a movie or if I'm on a work trip. You know, she might scour the area and find something that's quirky to do, some strange museum, you know, that I wouldn't have found on my own or some really interesting restaurant that I wouldn't have picked out. So, yeah, I mean, she brings so much joy to my life that would not be there if it was just me because I wouldn't take the time to do all those things.
Scott - 00:20:01:
Right. Well, you're a very fortunate person and she is as well. Sounds like a great team. Last kind of personal question I'll ask for a little bit. What show are you watching right now? You're into a show. What show is it?
Dr. Bedlack - 00:20:16:
I just finished a show which was called Department Q.
Scott - 00:20:20:
Oh, yeah, I've heard about that.
Dr. Bedlack - 00:20:21:
I believe it was on Netflix. Holy cow. I had to watch the last two episodes, usually just one episode a night, but it was such a cliffhanger at the end of the second to the last episode that there's no way I could have slept. So we finished both of those last night. And before that, I watched Duster on HBO Max, which definitely had some of the coolest clothes. It's set in the 70s. Man, I'll tell you what, I've got a pair of bell bottoms now inspired by that show.
Scott - 00:20:49:
Rocking the bell bottoms, that's awesome.
Dr. Bedlack - 00:20:51:
Yes.
Scott - 00:20:51:
Yeah, so you want a recommendation for your next show? Are you a Godfather fan? Okay, so there's a miniseries called The Offer, like making an offer you can't refuse. And it's about the making of The Godfather and just how challenging it was to actually make the movie. And it's from the perspective of the producer, Al Reddy was the guy's name. And it's fabulous. So what my wife, Diane, and I did, and I could say a lot of the same things about Diane that you just said about Shelly. We're a team. But we spent a weekend binging Godfather 1 and 2, so we were fresh on the movies. And then we are now watching The Offer, and it's fabulous. And you like 70s fashion. There's a ton of 70s fashion in that show. There you go.
Dr. Bedlack - 00:21:38:
All right, that's on my list.
Scott - 00:21:38:
That's my recommendation for you. Write it down. Let's come back to ALS a little bit. You talked a minute ago about alternative treatments, and one of the initiatives that you founded and lead is called ALS Untangled. Talk a little bit about that, please, what you've learned from that. And it's a really innovative thing that you're basically crowdsourcing ideas on alternative treatments for ALS. What's been the impact of that so far?
Dr. Bedlack - 00:22:10:
Yeah, Scott, this is another example of something I never anticipated. Like, I didn't see anybody else doing this when I first started my career. But what I did see was... It's uncommon for a patient to come in and have like a bag of stuff. Oftentimes, plastic bag full of stuff. Next to them on the floor. And I remember one day I said, what is all this stuff? Patient said oh that's just stuff you know we we bought that stuff off the internet um we read some stuff in a chat room we thought we would try it we didn't think you'd be interested And I'm thinking to myself, well, wait a second. If I'm going to, you know, be this person's doctor. I've got the, all these years of. Knowledge and training to try to evaluate things scientifically. Shouldn't I be interested in these things? If my patients are interested in them, shouldn't I be interested? And I remember going to a meeting and, you know, getting a group of my colleagues together in the back and explaining like, I'm seeing this, what are y'all doing about it? And the most common answer I got was, oh, we just tell people it's a bunch of crap. Like they shouldn't be taking it, they're just wasting their money. I said, well, first of all, do you really know that it's a bunch of crap? Like maybe there is something in there that helps. And second of all, isn't that kind of disrespectful? Like people spend time and money on this stuff. At least we could, you know, evaluate it with an open mind. And so I said, let's put together something like that TV show, The X-Files. We'll build a team. We'll build like some standard operating procedures, including a website where we gather ideas from around the world. Anybody can submit an idea of something they saw on the internet that might help. And we assign those ideas to members of our team, which now numbers 130 clinicians and scientists from across 12 different countries working on this. And we try to write these scientific reviews that would be understandable by a non-scientist. And our goal is not to put anybody out of business. We're not 60 minutes and we're not scam alert or anything like that. I mean, we're just trying to critique the science. So that if you're a person living with ALS anywhere in the world, and you're thinking of buying and trying this thing. Well, maybe you'll have now not only what the person selling it says, but what a team of 130 clinicians and scientists thinks about it. And in this way, maybe you can make a more informed decision about what it is that you're going to buy and try. And I would say we've been doing this now for 16 years. We've got over 500 things that people have asked us about. We've published on about 80 of them. We try to publish six or seven a year. They take quite a long time, about 40 hours to gather all the information the way we want to gather it. You know, I would say we've definitely found a lot of things that clearly are not worth spending money on. We've got a system that we call the red flags. We've sort of looked at what are some of the things associated with those very poorly promising things. So that if somebody pops a website up today, I could go on it. One of my patients asked me about it today. I could say, well, here's seven red flags. That I see on this new website, things that we learned that you should be careful about. But we've also found some things that actually might work. We found eight things that we're very excited about that we think definitely warrant further study. And so for my patients who want to self-experiment, I'll look at what they're taking or what they're considering buying and I'll give them my honest opinion. And if my opinions suggest that maybe it's not promising, it's important then to be able to have something else because... You know, a person with a disease like this is not just going to go home and do nothing. They're going to do something. And so if we say that this thing is not promising, well, we have to be ready with something that is that they could buy and try. And so that's the value of this to me. Something else that came out of it that I never would have expected. Somebody once asked me, could you look at this website? There's a video on this website of a woman who says she went to this energy healer and was cured or ALS or ALS went away. This video, and I said, this this can't be real, like, here's a person from Virginia. And in the video, clearly her muscles aren't wasting away over time. And then she goes to see this energy healer. And I see her starting to be able to do things that she couldn't do. And eventually, by the end, she said she's back to normal. I said, I don't know. I don't know if I can believe this, but I found her. I talked to her. She sent me her medical records. She was right. She did have a, she did progress to where she was paralyzed and near death. And then over two years under the care of an energy healer, she recovered. So I'm like flabbergasted because I'm thinking to myself, energy healing. I mean, there's no science that can explain how energy could come out of someone's hands and heal their motor neurons. So I reached out to the guy, the healer, and I said, can I study you? Like, I have no idea how this is supposed to work, but can I send some of my other patients to you and measure things? See if you can make anybody else better. And he responded with a one-liner that I'll never forget. Richard? For those who believe, no proof is necessary. And for those who don't, no proof will ever be enough. That's that. So I reach out to some of my more senior colleagues and I say, have y'all ever heard of a case like this? And lo and behold, cases like this were in the obscure literature since the 1960s. People had been reporting cases where it looked like someone had ALS. They progressed to where they were disabled and then they recovered. And in these cases, people would say, well, I don't know what it was, but I sent that person on their way and told them to have a good life. And I'm sitting here pulling my hair out. I'm like, we've got to study. We've got to put these people together.
Scott - 00:27:47:
Your ALS reversals project that we're talking about now.
Dr. Bedlack - 00:27:50:
We've got to study them. We've got to see if they have something in common that we could give to other people to reverse their ALS. Yeah, ALS Untangled was really the birthplace of ALS reversals.
Scott - 00:28:03:
Have you come to any conclusions at this point about the folks who have had that reversal? Is there anything you can see that they have in common beyond a reversal of the disease?
Dr. Bedlack - 00:28:15:
So first thing I would say is almost every one of the 62 ALS reversals is an incredibly hopeful person. And it gets back to what I was saying before about hope and how I've come to think of it as more than just an emotion. I actually think hope is a treatment. It should be taught in medical school how to be a hope booster because I think it's a treatment. But I don't know if hope came first in those patients or if hope came after. Like you can imagine, Scott, if somebody said you had ALS and this is what was gonna happen, and then instead of that happening, you recovered. My gosh, your attitude would be like, holy cow, I'm so lucky, I'm so fortunate, I'm so positive, I'm so hopeful now. So I don't know what came first. But I also know that in about a third of the ALS reversals, there's a very odd... June. It's called IGF-BP7. And it controls the levels of a protein by the same name. Now, that protein has never been thought to have anything to do with ALS. We've got some evidence now that it might. And in particular, what we think is happening in these reversals, the third of them with this genetic abnormality, is maybe the levels of that protein are low enough where their motor neurons can be stronger, can be more resistant, kind of like being vaccinated against the flu. Doesn't prevent you from getting the flu. But if you get it, you get a milder form of it that you don't die from. And so maybe these people with this gene that they're born with, they're naturally vaccinated against ALS so that when they get it, it's a milder disease that their body can beat. So to test that theory, I'm actually designing a trial. I found a nutritional supplement used by bodybuilders called beta-hydroxybutyrate or HMB that seems to lower the levels of that protein. And so I'm designing a clinical trial that I hope to open later this year to see if I can knock that protein down and reverse anybody else's ALS.
Scott - 00:30:13:
I want to hear a lot more, if you have the time for it, about treating for hope. I mean, how do you do that? And that makes me think. About the mind-body connection, you know, and the way, and you talked about the gut microbiome. There's a lot out now about, you know, the connection between the brain and the gut, and maybe the gut is even a second brain in some fashion. I'll just ask my stupid question and you can pick up, take it wherever you like. Is there any possibility that... The mindset, the hopeful mindset. Influences genetic expression at some levels so that... You get better genetic. Outcomes because I don't even know if I'm asking that the right way, but take that wherever you like.
Dr. Bedlack - 00:30:58:
No, that's a great question, Scott. So as I've studied hope now, you know, for almost 20 years since that patient who turned me on to it. There's a ton of studies out there, including studies just like in college students, looking at something called hope scores and then following students for decades to see what happened to them. And it turns out that those with higher hope scores, they did much better medically, right? They were far less likely to have any chronic disease. And so there's two possible explanations for this. The first is... Maybe more hopeful people just have more healthy lifestyles. And that's been borne out in some studies. If you're more hopeful, you take care of yourself. You eat better. You avoid smoking. You don't overindulge in alcohol or drugs. You avoid risky behaviors. If you're less hopeful, you don't worry about that stuff. But there is also a biology of hope. And so across every disease where this has been studied, there are differences in the expression of different proteins in the blood and in which genes are turned on. So people who are less hopeful, they have markers of inflammation that are much higher than people who are more hopeful. So again, it's one of these things, which comes first? I don't know. But I have a study underway now to look at a specific hope-boosting strategy. Like, I've got my own, and we'll talk about it. That's what I made the movie about. Over 20 years, I've developed an approach to boosting hope, and it's complicated. And I don't think most docs are going to want to do all the things that I do. They're not going to want to wear the wacky clothes and travel the world with their patients. I could show them one thing that took less than 10 minutes that somebody on their team could do that would boost hope scores. And if people with higher hope scores, NALS did better. Then I think I would have something. And that's what I'm working on right now.
Scott - 00:32:53:
What do you, do you have any early... Theories of the case about what that one thing in 10 minutes is.
Dr. Bedlack - 00:33:00:
Yeah. So I don't have data back to prove it, but I'll tell you what I'm doing. So first, there are studies in oncology that simply talking about hope. Boost hope scores. Just the mere acknowledgement that hope is important by someone's clinician and opening a conversation is enough to boost hope scores. And so the first thing I'm doing is When people hit the door to my clinic, instead of asking them, what are you here to complain about today? Which is what everyone gets asked when they go to the doctor, the first question, probably by the front desk.
Scott - 00:33:33:
What's bothering you?
Dr. Bedlack - 00:33:34:
What are you here to complain about today? So think about the tone that that sets for the visit. You're here to complain about something, okay? What if the first question was, what are you hopeful about today? Tell me two or three things that you're hopeful about. It's amazing. How that can change the whole visit.
Scott - 00:33:50:
So can I share something with you very quickly? I want to hear the rest of the story. In coaching, my field, in executive coaching, there's a term called appreciative inquiry. Ever heard that? I have not. Well, your question, what are you hopeful about today, is an appreciative inquiry question, right? And the whole point is, tell me, rather than starting with what are all your problems or what are you pissed off about at your executive level job or whatever. Like, yeah, what's going right? What happened last week that was good that you're excited about? You know. Those kinds of questions. It sounds like you're sort of doing the same thing when you start that way.
Dr. Bedlack - 00:34:29:
Yeah. And I would say if I asked a bunch of my colleagues, what do you think the answers would be? Something like this. I bet a lot of my colleagues would say, well, everyone's going to want a cure. Everyone's going to say they want a cure. It turns out that's the minority of responses. It's a small percentage, it's less than 10% of people who list that as something they're hopeful about. They list things that we can help them to accomplish. Like they might list, I'm hopeful that my spouse can get some help from me at home. Fantastic. I know how to do that. Or... I'm hopeful that I can get a wheelchair that will allow me to go to my kids' soccer games this summer because the one that I have, I can't get it in the car, so I have no way to go. Guess what? We have people on our team that can brainstorm that and we can make that happen. So if we know what you're hopeful about, we can personalize the visit instead of just assuming that everyone is there to hope for a cure, which I don't have yet, hopefully someday, but there are actionable things that we learn from that question. And I think just asking it is going to boost hope scores. And then the other... Instrument that I'm, that I'm testing. Was actually developed by a professor with ALS, Dr. Jim Plews-Ogan. He was a professor at University of Virginia and he got ALS and he wrote the most amazing blog. I mean, it was just mind blowing when I would read. Some of the things he thought about with his disease. And one day, He wrote about his clinic and he said, I love my clinic. I go, I get a lot of attention. I see this whole team of therapists and I, I leave with a lot of ideas. But there's a lot of measurements made, and the measurements are very often worse than they were the time before. So some part of me feels like a failure. I was like, damn, that's... I never thought about that, but we are making a lot of measurements of motor strength, and oftentimes they are worse. He said, what if clinics incorporated a measurement scale of parts of a person that were not related to their motor neurons, parts that could thrive in the face of ALS? And so he came up with something called the turbocharged living scale. And so it forces us to ask about a person's humor, about their advocacy, about their compassion and their kindness. And it's amazing when we start asking these questions, how the whole family's faces just light up and they tell stories. Oh, just the other day, he said they've told the funniest joke. Instead of everyone being sad that, you know, now we need to wear a brace or we can't drive anymore. Yeah, there's going to be some of that, but we can also celebrate the parts of us that don't have to be touched. And I tell people... Your family is not in love with you because of your motor neurons. They're in love with you because of all these other parts of you that we never... Celebrate. We never measure. We never spend any time talking about in clinic. And so this thing takes less than 10 minutes to go through this whole scale. And it changes the whole perspective in the room of how the most important parts of a person can thrive, even in the face of a disease that's taken apart the motor neurone.
Scott - 00:37:26:
So there's a reason I'm asking this question. You just inspired the question. As a physician, what do you think the connection is between hope and gratitude?
Dr. Bedlack - 00:37:34:
I think that hope is a combination of optimism and agency, right? Those are the two things. Hope is not just optimism. You know, somebody who's... Completely nuts and is just optimistic for no reason and doesn't have any goals or plans, that's not really the same as hope. Hope is like having goals and visualizing pathways for, for meeting those goals and finding the motivation to go down those pathways. And I think gratitude comes in. Like I use myself as an example. There's times when I get down. I mean, there's times when I'm like, man, you know, one of my favorite patients just passed away in spite of all my efforts. I was not able to save that amazing person. And that knocks me back and it starts to make me wonder, like, maybe I should turn this over to somebody else who's smarter than I am. And then I think to myself, but let me remember the times that we shared, how I got to know this lady as a person, not an example of ALS, but I got to know her as an artist. I got to see her art. I got to hear the stories about, you know, where the prize that she won for this piece and I got to meet her family and I got to see where they did it. That's gratitude, and it puts me back in the right place to be hopeful.
Scott - 00:38:59:
Yeah, I mean, you used a key phrase in there, I got to. I got to do this. I still get to tell jokes, right? In spite of my neuromuscular challenges, I still can tell jokes. I get to do that.
Dr. Bedlack - 00:39:13:
Yes.
Scott - 00:39:15:
That's a huge part of it. Well, so we've got to talk about Stitching Strength because the new documentary that provides on film. Your story as a proponent and disciple and proselytizer, whatever words you'd like to use for the power of hope, especially as it relates to your work professionally. Talk a little bit about what the movie is about, please, and the origin story at NC State that led to the movie.
Dr. Bedlack - 00:39:43:
Yeah, well... I had hoped by 25 years into my career, working as hard as I have, that I would have found an answer to this, that I would have ended this disease. I haven't, but I do think I found something. It's what we've been talking about, the positivity and the hope, and the fact that I think that influences outcomes. And I wanted to show people how I generate that. And so that's really kind of the idea behind the movie is how does this guy working in this difficult field stay positive and hopeful? And what does that mean? To his patients. And so... For me, again, I talk about the fashion. I talk about, you know, something that's been with me my whole life. I talk about all the amazing collaborations, the design clothing that celebrates, you know, people living with ALS, honors them, raises awareness, sometimes even raises money for ALS research. I talk about the language that I use. I have to be very careful about the words I choose. I talk about personalizing the care. I talk about getting to understand each of my patients as a human being, not just an example of a disease. And that means spending time with them out of clinic. But in the movie, you will see... I came to know some of these people as musicians or artists. One case, I came to know someone as a fashionista like me, someone who got a lot of joy from what she wore. And it was always that way. And we used to love to talk about fashion shows that we had seen or specific designers that we both admired. And as the disease went on, I noticed that she wasn't wearing the same things. And I asked one day, what's up? She said, I just can't get into those things anymore. I'm too weak and I don't want to ask all my caregivers to help me because I'm already putting such a burden on them. I said, you know, ALS should not be able to take that away from a person. Kind of, I reached out to NC State where I knew they had a fashion school. I got connected with this amazing professor named Sam Pierce. She has long been interested in what's called adaptive fashion. So fashion that's cool, but also easy to get in and out of. It can work around your disability. And she's now got a class over there every year on adaptive fashion. And it starts with interviewing this patient or one of my patients that love fashion to hear about what specifically is it that you love that brings you joy? And why can't you wear that now? What exactly is it that's not allowing you to wear it? And after a few months, they design collections. They present them to all of us. And it's my greatest joy to see the look on the faces of my patients because you can tell they feel seen. They feel like they matter again. Like today. They're not ALS. They're a person who loves fashion that an entire class rallied around. To get them back into what they love.
Scott - 00:42:43:
It's like Project Runway.
Dr. Bedlack - 00:42:46:
Yeah, but that's where the title comes from. Until the day comes when I can fix him on the outside, I'm going to try to stitch spiritual strength in all these different ways that we talked about, including what I put on when I go to clinic.
Scott - 00:42:59:
That's fabulous. Movie is, in limited release, where can people see this? I know there's a trailer on YouTube.
Dr. Bedlack - 00:43:08:
It's just recently completed, and we're doing community screenings right now. So if your listeners live in a place where they want to do a community screening, on our website, there's an application form. Just tell us where you are and where you want to do it, how many people you think you can get. Do you have an idea for a venue? Ideally, one that doesn't cost us anything because we're kind of out of cash. But yeah, we're doing community screenings. We're applying to film festivals. I think we've applied to 30 film festivals. You find out in the fall if you got into those. They tend to occur in the winter months. And so the dream, of course, is that we would get it into a film festival, and somebody from a streaming service like Netflix or Amazon or Disney would see it, buy it, put it on their streaming service, and then the world can see it. And there is actually a precedent for this. There's a documentary short film. It's on Disney. It's called The Last Repair Shop. Absolutely incredible story of a musical instrument repair shop in inner city LA. And at the time the movie was made, there was a small handful of eclectic individuals who were volunteering their time to repair instruments from kids. From broken homes who had no other escape except their music. And when their instrument broke, they didn't have that escape anymore. So they were telling the story of these people. They were fixing the instruments. Beautiful. Just a beautiful, simple story. And Disney bought it. It wound up winning an Academy Award. It wound up generating over $25 million in revenue for that repair shop. And they've expanded and hired a whole bunch of new people. I just want to bring some awareness with this movie of ALS, but also of the fact that there is a treatment, and I think it's underutilized, and I think it's hope.
Scott - 00:44:55:
Love that. I know your time is so valuable, so let me just ask a few questions as we... Wrap up to sort of put a bow on things here. What has ALS taught you about what really matters in life?
Dr. Bedlack - 00:45:08:
Yeah, that's a great question. I mean, I think there's a spirituality to all of us. And I think what comprises that is going to be different in everyone. I mean, for me, part of it is the fashion, believe it or not. I mean... You have to find for yourself what brings you joy. And I think for most of us, it's more than physical things that bring us joy. And I mean, unfortunately, as the population of the world ages, neurodegenerative diseases like ALS are going to become much more common. And I think it's important for all of us to remember, we're not defined by the things we can't do. We're defined by the things that bring us joy and make others love us. And those things never have to be taken away.
Scott - 00:45:51:
Question I like to ask everybody that comes on best ever just for fun. What's been in your ears lately? In other words, what are you listening to that's inspiring you, making you laugh, shaping your thinking, any of that?
Dr. Bedlack - 00:46:04:
I love music. I mean, you know, you talked about the rock star appearance, and I guess that was kind of part of what drove me to close. I mean, I recognized it when I put stuff on, but I also loved rock and roll since I was a kid. I mean, Kiss was my favorite thing as a kid. I would dress as Kiss, you know, I'd do Kiss concerts in my basement and charge the neighborhood kids a dime to come and see me lip sync with my friends. But I just, like, I said to myself, these dudes just walk on stage and immediately you feel this charge. And part of it is the appearance. I mean, it's the crazy, outrageous clothes that they're wearing before they've even opened their mouths and sung a note. You're charged up already. So the rock star energy is something I try to tap into. It's harder as I get older, but I keep trying. But yeah, the music I'm listening to right now, I mean, I absolutely love a band called Wolf Alice. Okay. And they just put out a new album. And I also really like this band who's still early, but they're called Wet Leg. And they just put out a new album. Both are like very, I don't know, vibrant sort of clash between... I guess I would say rock and roll, sort of typical rock and roll, and the stuff that we used to call alternative music when I was in college.
Scott - 00:47:26:
Yeah, like the REM stuff. So you're very au courant. What's your source? How are you learning about Wolf Alice and wet leg? How do you learn about that stuff?
Dr. Bedlack - 00:47:39:
We got all these things following us online now. And, you know, you get these suggestions. I mean, you can't really do anything anywhere.
Scott - 00:47:47:
It's the algorithm.
Dr. Bedlack - 00:47:48:
You can watch TV without nothing. Suggesting five other shows that are like this one and so um on apple music there's an alternative station that I listened to. And on that station, it seems to understand what kind of music I like. And it keeps suggesting new bands that have new songs or new albums. And so I wind up downloading the album. Like, wow, I really do like this.
Scott - 00:48:10:
I love it. I love it.
Dr. Bedlack - 00:48:11:
So that's the, that's the upside of the scary things that are following us online.
Scott - 00:48:15:
So I will confess proudly that I am a huge Kiss fan from the 1975 Kiss alive era. Paul, Paul Stanley has a new memoir out. Did you know that the lead singer for Kiss?
Dr. Bedlack - 00:48:31:
I did not, but sometimes I think to myself of the objects that got away. I was visiting a casino down in Florida. I went to see Pearl Jam earlier this year. There was an art gallery that was full of Kiss art.
Scott - 00:48:45:
Oh, yeah.
Dr. Bedlack - 00:48:46:
I walked in there and I said, what is going on? Like, what? He said, did you know Paul Stanley is a painter? And Paul Stanley lives here, right? You're five minutes from this casino and he exhibits his art here. And if you buy one of these pieces of art, he will come in here and personalize it for you. And I was like... How bad is my wife going to tell me if I buy a $5,000 piece painting? Ultimately, I'll let it go. But man, I was telling you.
Scott - 00:49:10:
But you know it's there. You could still go back. All right. Thank you so much, Rick, for everything that you do, first of all, and for being... The role model of hope that you are and, um, and for taking, you know, an hour out of your day to talk with me. I really, really appreciate it. And I'm sure our listeners are going to appreciate it.
Dr. Bedlack - 00:49:31:
So appreciate your interest, Scott. And all I would ask in return is that next time you let me go first in Donnie's chair.
Scott - 00:49:37:
Yeah, we'll trade. We'll trade. I almost forgot. Really important. Give us all the coordinates. For the movie, for I think people that are listening that have an interest in ALS for personal reasons, the ALS Untangled Initiative, anything that you think would be helpful to people, please list the coordinates here, and we'll also include them in the show notes.
Dr. Bedlack - 00:50:00:
Yeah, I mean, you can follow along on my Instagram, which is Stitching Strength. And I talk about where the movie's playing next. We have a website, which is Stitching Strength. If you just Google Stitching Strength, the website should be the first thing that pops up. And it describes what the movie is. And there you can watch a preview. Can also see a calendar and that's where the form is if you want to request a community screening. And again, these can be anywhere from a dozen to 500 people. We've done them already all over the United States, and we've got a bunch more scheduled. So we're happy to do that. But other websites, Duke ALS Clinic. As a website, if you want to kind of see what we're up to as a clinic. ALS Untangled, if you want to read about alternative therapies, and ALS Reversals, if you want to see some of the research I'm doing specifically on those 62 people who recovered from ALS.
Scott - 00:50:50:
Okay. Perfect. Thank you again and Godspeed.
Dr. Bedlack - 00:50:54:
You got it, Scott.
Scott - 00:50:54:
And look forward to seeing you at the barbershop.
Dr. Bedlack - 00:50:58:
Sounds good, man. Take care.
Scott - 00:51:06:
So coachable moments from Dr. Rick Bedlack. I said to Rick towards the end of our conversation, I explained to him that I usually do this coachable moment segment, always do this coachable moment segment, and I'm usually pretty good at boiling it down to three things. Not today. There was so much in there in that conversation with Rick that. It's just information for life, I guess. So I'm not going to try to do it thematically. Cece and I were talking before we started recording this segment about things that stood out for each of us. My number one, we had an extended conversation about hope, Rick's whole practice. Medically and professionally and personally. Is based on hope and spreading hope, having hope, giving hope. And... He gave us a wonderful definition of hope. It's not just optimism. It's optimism plus agency, he said. So, you know, I have a vision of what I want things to be like, but what can I do? In the meantime, whatever I can do to help actualize that vision. And then another thing that he talked about when I asked him, you know, what have you learned about what really matters in life? His answer was, find for yourself what brings you joy. And he was really clear. About all the sources of joy. And it's not just your physical capacity, right? Physical capacity is not. What makes you who you are. You know, it's so many other things in your work, in your life, all of the above, right? And I think it's really worth thinking about that question. What is it that brings me joy? And then Cece raised the point about, he asked the question, are you in a job or are you following your passion? Which is such a great question professionally. I think it was Friedrich Büchner. I read this quote years ago, and I'm probably going to mess it up, but it's paraphrased as... Fulfillment in life comes when our great passion or joy intersects with the world's great needs. You know, what's needed in the world and what am I passionate about? What brings me joy? And can I find a professional path, a personal path? That It's that intersection between need and joy and passion. And so Rick clearly embodies that, you know, in so many ways. You don't have to, I hope you get to watch this interview and not just listen to it. If you're listening to it right now, go watch it on YouTube. Because there's so much more to it visually. That you're just not going to get the benefit of if you're just streaming it through your ears. So I'm all for audio streaming, but in this case, you definitely want to watch the video with Rick. So, try to sum it up on one of three of many takeaways. Hope, it's optimism plus agency. Find for yourself what brings you joy. I can't stop there. Be the change you want to see in the world is his philosophy of leadership. I was really struck by how much he observes, how much he pays attention to people. Hey, what's in that bag of stuff that you're bringing to the appointment? What's in there? Let me investigate that. Because he's done that, they've found potentially eight things that could alleviate ALS or maybe even reverse it. So... So much there. This one, I think, is one that... I'm going to listen to three or four times because there's so much wisdom from Rick Bedlack that I want to absorb. And my guess is you'll probably want to listen to it more than once as well. So I'm going to quit trying to sum it up. It's kind of impossible in this case. Thank you so much for listening to Best Ever. Thank you to Rick Bedlack for being here. He gave all his coordinates. We'll have those in the show notes. And. Know a personal note for me this season of Best Ever of season one of Best Ever, has been such a thrill for me because this is the third time I've tried to do a podcast, and it's the first successful attempt. And listeners and viewers like you have made it such a thrill. We've gotten so much great response to the show. I'm so grateful to you for watching and listening, whatever the case may be for you. And I'm really grateful to all the terrific guests we've had. They've far exceeded any expectations I had for a guest lineup for season one. And I hope you got as much value out of listening to them as I did from speaking with them and interviewing them. So I'll be back in your feed with fresh content in January of 2026. Lots of great content in the meantime between now and then. But again, thanks for listening. Thanks for watching. And thanks for being a part of the Best Ever community. If you found today's conversation valuable, be sure to follow Best Ever on your favorite podcast platform and leave us a review and a comment on this episode. I want to know what's landing with you and your engagement really helps others discover the show. And if you're looking for more on how self-management fuels lasting leadership impact, connect with me through eblingroup.com. I've learned it takes a village to make a podcast. Thanks to executive producer Cee Cee Huffman and editor Mark Meyer, both of Wavestream Media. And thanks to my other team members, Lindsay Russell, Mary Motz, Sophia Shum, and Diane Eblin. Best ever is a production of the Eblin Group. Thanks for listening to Best Ever. And until next time, keep taking those small steps that lead to your best ever outcomes.