Hop on a Cure for ALS with John Driskell Hopkins

Episode Transcript

John Driskell Hopkins:
(Singing).

Dr. Correa:
Welcome back to the Brain & Life podcast by the American Academy of Neurology. The music you just heard is from John Driskell Hopkins from the Zac Brown Band, and it was great getting a chance to meet and talk to Hop for this episode.

Dr. Nath:
Tell me about him.

Dr. Correa:
Several months ago, the Zac Brown Band and John Driskell Hopkins released to the community that he was diagnosed with ALS. He had been noticing changes in his guitar playing and that was really the first thing that brought him to attention.

Dr. Nath:
Oh, wow. We've had now a few episodes about this with musicians specifically encountering neurological diagnoses and the intricacies of that when somebody has some very skilled activities that can be disrupted, and sometimes they can get clued into symptoms a little faster, I think, than someone without those skills, which is interesting, sad, and interesting.

Dr. Correa:
Yeah, and ALS is a condition that I think many of us started to hear about, are more aware of, after the Ice Bucket Challenge. It used to be called Lou Gehrig's disease.

Dr. Nath:
That's right.

Dr. Correa:
And this is our first episode discussing that condition, meeting someone with it, and discussing more about ALS in detail with our medical expert. In this episode, we're also excited that Hop is going to share with us his music throughout the episode. We'll share the names of the songs in the credits and in the show notes so you can check those out if you're interested.

John Driskell Hopkins:
(Singing).

Dr. Correa:
Welcome back to The Brain & Life podcast. Today, I get to geek out with a bluegrass legend. Thanks to John Driskell Hopkins for sharing his music today at the opening of the episode and joining us on The Brain & Life podcast. Hop is a father, musician, singer, songwriter, and co-founder of the Grammy-winning Zac Brown Band. He plays the banjo, ukulele, guitar, and most importantly, a bassist for the band and is joining us to share with us his experience of being diagnosed with ALS, or amyotrophic lateral sclerosis and how he's doing living with the condition. After publicly sharing his diagnosis, Hop and the Zac Brown Band also started Hop On A Cure, a nonprofit organization to help increase research funding and research for an ALS Cure. Hop, thank you so much for joining us today on the Brain & Life podcast.

John Driskell Hopkins:
Thank you for having me.

Dr. Correa:
Take us back to the early days of the Zac Brown Band and touring the country. Before a neurologic condition or anything ever entered your life, what drove you and Zach Brown and the other founding members to form the band and share your musical style?

John Driskell Hopkins:
Well, Zac and I met in the late '90s, and I was running an open mic night and he came to attend, and he showed a lot of promise then. And, when I ran into him again a year or two later, he had continued to improve, and we recorded a record together. Early 2000s, we worked on an album called Home Grown, and he came in to track Toes, which I ended up helping him write a little bit of, and then he mentioned that he needed a bass player. We like to say that I've been sitting in for 17 years.

Dr. Correa:
As I understand, it was on tour with the band that you first started to notice symptoms with your condition. What was it that caused you to see the doctor?

John Driskell Hopkins:
One of the things about this double-time strumming in bluegrass is, once you get into that, it's second nature. And, when my right hand was giving me grief and wasn't able to do that double-time strum, I was still playing more of the mid-tempo rock stuff with no problem. But, once in a while we do get into that fast bluegrass thing and I was having trouble, even as early as 2019, and I was noticing that I wasn't able to jump and run across the stage, and I've always been very active and known for jumping with Clay. We have this moment in our song Free where we both do this synchronized jump and, at one point, I fell, and it was all kind of funny, but, in my mind, I'm thinking, "Man, I didn't land right. My balance is off."
We explored lots of things. We thought maybe it was the statin drugs that I was on for cholesterol. I was approaching 50, I was a little heavier, and all these things were in my mind, and I never had on my radar that it could be motor neuron disease. My primary care physician, and he looked at my walk and did some of the things that the neurologists have done and said that he wanted to rule out ALS, and that's when it was ruled in. That was December 21st, 2021.

Dr. Correa:
What did you end up doing with a neurologist or who did you go to first that really ended up confirming this??

John Driskell Hopkins:
I had already seen two neurologists.

Dr. Correa:
Really?

John Driskell Hopkins:
I had already been to one who did half of the EMG and he ruled out neuropathy, but ALS was not on our radar. He didn't do any needling. He just did the electronic stuff. And then the second one made me cut back on the bourbon and lose weight, and they did not think that I was ALS symptomatic. And my primary care sent me to a third neurologist who did a full EMG and then he decided, after the needling, that he was 75% sure. And, at that point, I went to MGH and they confirmed, at the Healey Center, that I had ALS.
My condition has been very slow progressing and I'm on riluzole and I'm on supplements. I've recently gone vegan. I'm trying to lose this belly. I don't want to lose muscle. I've got great muscle bulk right now. I'm noticing just the slightest bulbar thing and that's what terrifies me the most. Without my voice, I don't know who I am. This is seven months in, almost eight, and there haven't been that many changes. I still can stand up from a chair without my arms. Getting off the floor is difficult, but not any more difficult than it was a year ago. I'm hopeful that it will continue to be slow and I'm hopeful that a lot of these new treatments will get approval and I'm just waiting for the next big thing to make a real dent in this, and, until then, I'm trying to stay as limber and as healthy as I can.

Dr. Correa:
Well, it's great to hear that it's been moving slowly for you, and you talk about how the reality in ALS, that some people have different courses with it and they can have different types of symptoms. You mentioned bulbar. For our listeners, that's the facial, the swallowing, and the speech muscles is a group that we use a term in neurology called bulbar, and that's a grouping of both muscles and symptoms that people can have. And what you've noticed is a change in some of your speech. What types of bulbar symptoms have you noticed?

John Driskell Hopkins:
I would call it limb-onset originally. I've started to notice is the slowing and a slurring. And, for someone who is a theater graduate, a vocalist and a voiceover actor and a songwriter and singer, for all of my life, I'm very acutely aware of every detail that happens in my lips and in my speech and the agility of my tongue and being able to say things quickly and clearly, and I'm still able to say things clearly, but I have to slow down to do that. I don't want it to get any worse. I'm not looking forward to the possibility of that, but I have to be realistic and I'm trying to record as much music as I can right now while my voice is still strong. I'm on tour. I'm in New Jersey right now.

Dr. Correa:
It's great to hear you're on tour and you're with the band and that so many people can still get a chance to get out there, see you, and listen to your music. ALS affects many people and their families differently. How are you and your family managing with the news and just planning together?

John Driskell Hopkins:
The news hit like a freight train. I had this awful first couple of months trying to wrap my head around this. As I got into some anti-anxiety meds and got a grip on it, it's gotten better, and I'm the kind of person that wants everyone to know everything. Coming forward was important to me and to my wife and we talked at length about how do we protect our girls from this announcement? Her protection instinct was met with my thought process that I want them to know that we did everything that we could, and doing everything that you can means telling everyone, means getting out there and trying to raise awareness and generate funds for more research, and we need more people doing more things with more resources.
I'm learning so much. It's been very helpful to have the support of the community, the people that are also dealing with this, to know that we're not alone, but we're day by day until we find some incredible news that someone has found something that's working to heal motor neurons. My girls are incredible, they're very supportive, but, right now, their understanding of this is that dad's legs aren't working very well and we don't want him to fall and they don't understand the depth of the possibility of the future. They will in time, but it was important that they were a part of this decision and a part of this quest.

Dr. Correa:
Yeah, it's always a tough decision that people have to figure out and think about for their family, as sharing it with others, especially kids and other people within their family. And, within the ALS community and the neurology community, we're super appreciative of the advocacy work and what you're doing to help bring awareness and support research. Beyond the Ice Bucket Challenge that increased awareness for everybody about ALS, what do you think are some other things that are important and essential for people to understand about the condition?

John Driskell Hopkins:
I think that if I were to try to convey one thing about awareness is it would be the general understanding of what ALS does to people. The motor neurons sounds all fancy to the layman. What we're dealing with is a shutting down of communication with the brain and the muscles. Basically, my muscles are failing and, eventually, hopefully over a very long period of time, ALS patients deal with no more muscle movement in their arms and in their legs and in their throat and in their ability to breathe. This is what causes the fatalities. There are people that are living with tracheotomies and with feeding tubes and with waste tubes and they're able to communicate with technology and tablets that read the movement of their eyes, and there are other people that don't get that opportunity, that either can't afford it or they choose not to live that way or they're not eligible. Their bodies won't even do that.
It's something that is affecting everyone. The first thing that I asked my doctor is what have I done to put myself in this position? And I was a swimmer, growing up, competitively, but I don't exercise as much as I should, but I'm very active, and what have I done? And I've gotten an overwhelming, "You haven't done anything." 20-year- olds,

Dr. Correa:
That's right.

John Driskell Hopkins:
... 80-year-olds, people who are professional athletes, no one knows how you get it and no one knows how to fix it. It's really, really frustrating. I'm just trying to make more people aware of the condition. This is why we need so much support is we need to shed some light on a lot of details. It's probably half a dozen different diseases that end in motor neuron and, if we can fix one, maybe it leads to fixing another.

Dr. Correa:
We need more understanding, not just in treatments and management of symptoms, but everything that needs to be done to understand all the different possible causes and what causes some people to have the condition progress slowly and what causes others to go more quickly. The condition of ALS, as you mentioned, might be multiple conditions, but we don't yet understand all the specifics, but it can cause many, really, to just focus on the loss of time that they have and the loss of abilities. What do you and your family do to help stay present for each other and to share in your hope and love?

John Driskell Hopkins:
I have been blessed to be able to bring them with me on some trips more frequently this year than in the past. I, historically, have taken each of my three daughters on their own Zac Brown Band trip. I'm just praying for several more years of being able to tour and do that and create and spread awareness as actively as I'm able. I'm in a very unique position today to speak to you and to explain to you exactly how I'm feeling with relative ease. God willing, I'm able to do that for a lot longer and continue to educate myself while shedding light on this to others.

Dr. Correa:
We're glad that you're keeping and moving forward. You mentioned just the need for more research and more awareness, and you and some other members of the Zac Brown Band came together to form Hop On A Cure. How is your foundation and that effort taking the next steps to help contribute to more awareness and more research?

John Driskell Hopkins:
I've got a lot of support from Zac Brown Band. The Hop on A Cure is if 501(c)(3) that was developed by my family. We're trying to generate as much awareness and as much funding for research as we can. Let's make it as big as we can while I'm able to play and sing and promote all the things that we're trying to accomplish. And we've already raised a lot of money, we're going to figure out what the best place for that is this year, and continue to adapt year after year as we see more opportunities to improve on research and medications.

Dr. Correa:
Well, we look forward to learn more about how you and the organization are contributing to the ALS efforts, and we'll include links to the website for the organization and their social media in our show notes. Now I wanted to get back to you and the band. What do you guys have coming up next? You mentioned that you're recording as much music as possible right now. What can we look forward to?

John Driskell Hopkins:
Well, I have a new holiday record coming out this year. It's my fourth and, this year, the band that's backing me on this record is called the Yacht Rock Review. Just released, in '21, a record of my original material. Of course, The Comeback is doing really well out of Zac Brown Band world. I'm trying to record things at home and I'm writing as much as I can to get things down, even if I can't finish them. I want to sing a lot this year, and I'm banking my voice with Boston Children's Hospital and trying to help them develop better AI in terms of synthetic voice duplication. And there are so many things to jump into with ALS, things that I can be helpful with, and I'm continuing to look for new opportunities to help.

Dr. Correa:
Well, we look forward to hearing you and your voice for many more years to come. We'll enjoy as we transition to our discussion with our medical expert on ALS. Thank you, Hop, so much for joining us here on the Brain & Life Podcast and sharing your story with our listeners.

John Driskell Hopkins:
Thank you for having me, doc. I appreciate it.
(Singing).

Dr. Correa:
We're excited to start taking your questions and feedback and sharing those responses here with you on the podcast. You can also email or record an audio message and send it to BLpodcast@brainandlife.org. And, of course, you can also reach Audrey and I on social media or the Brain & Life team @BrainandLifeMag, that's M-A-G.

John Driskell Hopkins:
(Singing).

Dr. Correa:
Welcome back to the Brain & Life Podcast. Now I'm glad to introduce you all to Dr. Stephen Goutman. He's a neurologist and the director of the Pranger ALS Clinic at the University of Michigan. In addition to his care for people living with ALS, he's doing research into the ALS risk factors. In our conversation, we'll learn more about ALS, its diagnosis, the treatment, and stay tuned as Dr. Goutman will share with us some essential information about what we know and the research progress on how we can prevent ALS.
How are you doing, Dr. Goutman? Thank you for joining us.

Dr. Goutman:
I'm doing well. Thank you so much for the opportunity to speak to everybody today.

Dr. Correa:
Stephen, I'd like to start with the basics. What is ALS, or what some people used to call it Lou Gehrig's disease?

Dr. Goutman:
ALS, or amyotrophic lateral sclerosis, it's a disease that we really think of as something that causes progressive paralysis, or really progressive weakness due to really the death of what we call motor neuron cells that are located in the brain, the brainstem, and the spinal cord. It actually turns out the disease is much more complex and it causes changes outside the motor areas. We know that some of our patients develop, for example, changes in their cognition, and some other people experience other symptoms with this disease. But I really think it's this profound change in muscle function that occurs over time that really makes us think about this as being a profound motor disease.

Dr. Correa:
You brought up the idea of those motor neurons or those nerves controlling muscle control in the body. Can you help us understand the importance of those motor neurons and that mechanism that leads to ALS?

Dr. Goutman:
We think of two populations of motor neuron cells. This is what we tell everyone when I see them in clinic. We think of these upper motor neuron cells located in the brain, and then they send signals via wires or axons either directly or indirectly to these lower motor neuron cells that are located in the brainstem or the spinal cord. They, in turn, then project to the muscles, telling our muscles to contractor of to move. And so, without these cells, these muscles lose their instructions to really work, and that results in the weakness that we see in individuals that have ALS, along with atrophy and loss of muscle.

Dr. Correa:
The motor neuron cells are like these computer chips that are in a remote control for a motorized car or what sends the signal to a runner to start running or someone even just holding their pencil?

Dr. Goutman:
Yeah, exactly. These are what gives the instructions to our muscles, right? These are the cells that, ultimately, at the end of the day, connect to our muscles and say, "Move this way, move that way." And so, when we lose those motor neuron cells, our muscles lose the instructor, right? It loses the individual that coaches or tells the muscles how to move, and that's what leads to the weakness that we see in individuals living with ALS.

Dr. Correa:
What types of symptoms can people experience early in ALS?

Dr. Goutman:
The initial symptoms usually fall into this category of weakness. Individuals are going to develop some weakness, usually in one of their limb muscles or in their facial muscles. For example, a very common presentation is weakness in a hand, leading to problems with dexterity, with writing, playing guitar, playing an instrument, weakness in a foot. Foot drop is really characteristic, somebody who's realizing that their walking is changing and they're catching their foot on the ground, maybe just don't feel as steady or balanced. And, occasionally, people also present with changes in their speech. The speech is more slurred, they feel like it fatigues at the end of the day, or they have trouble swallowing. These are going to be really the most common presentations of ALS.
There are some uncommon presentations as well, and I think these are important for us, as neurologists, to be aware of. People may have difficulties with breathing that's not explained by any other reason. They may have a head drop or their head tips forward. They have trouble holding their head up. Sometimes individuals will have a very profound or very marked loss in weight, we call it cachexia, where nobody really understands why they're losing so much weight, and then it's these other symptoms that start creeping up, generalized weakness, trouble breathing, and it leads to this diagnosis of ALS.
But I would say, for most people, like the gentleman that you interviewed, it's really this weakness either in the hand or the foot or changes with speech or swallowing. I'd mentioned earlier that we know these symptoms go beyond the motor system, and so some individuals do develop changes in cognition or thinking and can, in some cases, get a dementia. And so some individuals with ALS will be presenting with some of these cognitive changes or cognitive complaints or family members will notice changes in the way somebody's thinking or behaving. And, at times, those can occur either before they start developing the ALS symptoms or, really, concurrently. Sometimes they're not as noticed, I would say, because it's really the changes in the motor function that just become more pronounced more quickly.

Dr. Correa:
Okay. I heard you describe a variety of symptoms there, and some things might even be things that even me or someone else might notice in themselves. Reassure some of us. On the other hand, what are some of the signs with someone who has maybe a little muscle twitch or is noticing some weakness or has noticed some weight loss or some memory changes, what are some of the things that would help them know and feel reassured that it's probably not ALS in their situation?

Dr. Goutman:
It's hard when you come up with a whole bucket of symptoms and maybe any of these things could be caused by ALS. I think it's important to remember that ALS is still a rare disease and it's something that is not so common. However, we do want to identify people earlier in disease, but how do we really identify those who are presenting early with symptoms that are worrisome for ALS? I would say it's difficult, and we know that, in a lot of people, there's what we call this diagnostic delay. It means that, from the time they start getting symptoms to the time they're diagnosed with ALS, typically, a year passes by, it's a year of lost time for us to get somebody on, say, a treatment or get a concrete disease so they're not having to chase other options or not undergo unnecessary procedures.
And people talk about being on this ALS clock that, "My clock is running at a different pace than your clock." How do we sort out what's caused by ALS and what's not? I think it's hard. I think, a lot of the times, we like to attribute our symptoms to just normal aging, right, and so at what stage does a real disease depart from normal aging, and I think that's something that we have to figure out. I think we, as neurologists, are really attuned to certain patterns of weakness or areas of weakness and how weakness affects different parts, perhaps even just different individual muscles.
I would say that the alarm is when weakness begins to interfere with daily activities, right, so somebody is noticing that there's a progressive change in the way that they can do their day-to-day function and that they're having more difficulties that keep on changing and keep on progressing, or if they're noticing changes in their speech function or their swallowing function. They may not necessarily represent ALS, but they perhaps represent some change from normal that is valuable for consultation. And I think that's the message that we, as neurologists, really want to get across is that it's not so important that we figure out immediately or that somebody comes to us saying, "I have these symptoms," and the disease is X, Y, or Z. It's that, "I'm having these symptoms," and then we, as physicians, need to help guide people through this diagnostic evaluation.
And I think, for us, what's critical is having people come to us sooner so that we can start making these diagnostic evaluations. But, really, that first key is saying, "It's possible that my symptoms are not just normal aging. It could be something else. It's starting to interfere, it's progressing, it's continuing along some spectrum that I don't think is normal," and then go see your primary doctor and really encourage that referral to a neurologist so that we can address it and figure out what it may be. Our hope is that it's never ALS and, hopefully, we can identify some other ... maybe it is normal, that's the hope, but maybe it's some other disease that has some better treatment options for it.

Dr. Correa:
Often there are many other possibilities and it's helpful to think of that. You don't necessarily have to come into the doctor's office thinking what's likely the diagnosis for yourself, but maybe organizing a little bit of the different symptoms you've had and how long you've been having them. You pointed out sometimes people think of some of these symptoms as maybe being just normal aging. Hop himself said, for a long time, he just thought, oh, his hand was weak because of aging or he was doing too much activity. He started trying to make changes, but then noticed it wasn't getting better. And so he got to the doctors and, through a process, you described it as the diagnostic evaluation, he had better understanding of what was going on. What are some of those tests and tools that help you distinguish ALS from some of the other conditions we've talked about?

Dr. Goutman:
We have newer criteria to guide us in our evaluation of somebody with ALS. I think what is useful, but, at the same time, is also frustrating when diagnosing ALS from the point of view of somebody who may be experiencing symptoms, is there's no ALS test. It really depends on the progression of symptoms and a physical examination. And that's what these new Gold Coast criteria were really created for, to simplify what our diagnosis and our understanding of is ALS to say this is really a progressive disease where there's been some departure from normal, it's progressed or it's spread in a way that's very characteristic or typical for somebody who has ALS. And then, through our physical examination, we can identify that there are changes in what we call upper motor neuron cells and changes in lower motor neuron cells, and the combination of these are due to ALS.
You're probably not escaping without what we call an electromyography, or an EMG test, combined with nerve connection studies. That's always the beloved nerve shock, needle poke test, where we send electrical shocks through your nerves and poke you with needles. And then, also, imaging is going to be commonly performed, so some magnetic resonance imaging, or MRI, of typically the brain and/or the spinal cord and maybe other regions. There's not this recipe that says you have to get this test. It's really up to the progression of symptoms, what else is going on.
Identification of risk factors is really the stepping stone to our process of what can we do to reduce the likelihood of somebody getting ALS down the road? ALS has features that you cannot alter that make you more likely to get ALS, such as aging. We know that the older you get, the more likely it is that you get ALS. You can't change the way you age. As the population ages, we think that the rates of ALS are going to increase. There have been some projections that ALS is going to increase by perhaps a third by 2040, so there may be more people living with ALS down the road. It becomes really more imperative for us to be thinking about what's driving this risk of ALS and then what can we do about it.
There are these genetic factors, and some individuals have certain genetic mutations, and that gives us a target. We can test for a gene, you can treat a gene, or we hope you can treat a gene, with certain medications that may prevent a disease from coming on. That's not just for ALS, but for many other neurological and non-neurological diseases. And what can we do to alter what will happen with somebody who has a genetic mutation, and we've certainly seen some success stories, especially in the world of neurology, of ways that you can really alter or really address a dysfunctional gene and improve somebody's neurological health over the long term.
There's that genetic piece, but then there are these other factors as well. And we have some strong evidence to say that certain environmental exposures have associated well with people who have this history of ALS. And there was a nice meta-analysis that was done a few years ago that basically looked at lots of different studies to see which are these ones that tend to be reported and tend to be seen commonly over time, and these are things like exposure to lead, exposure to pesticides, exposure to agricultural chemicals, physical activity, electrical shocks. And, in our own work that we do here at University of Michigan, where we ask our patients, who then we enroll as research participants, what types of things have they come in contact with, and we also recruit individuals from around the state that do not have neurological disease, we find, as well, things like exposure to pesticides, exposure to metals, exposure to particulate matter, certain occupations that may be more prone to these exposures, such as production workers.
We see these risks, and there's growing literature in ALS to look at things like air pollution and other types of more environmental or geospatial exposures. I think that we're really beginning to understand more fully this concept of where are these different risks derived from, and that gives us a target, right? That gives us that ability to begin risk factor identification on our way to this idea of prevention. And what we as researchers need to do is really develop the scientifically rigorous types of studies that allow us to be very definitive in what we believe are these strong risk factors. I think it's really important when we provide recommendations that they're grounded in scientific evidence and, if we want to make these public health recommendations, we really want to make sure that we have the good science behind it to say we've conducted such-and-such a study.

Dr. Correa:
Stephen, wanted to touch just on we mentioned that each person's experience with ALS can be different, but what are some of the common challenges or complications that someone may deal with throughout the course of ALS?

Dr. Goutman:
ALS is such a challenging disease because there's always an adjustment. The disease doesn't stop, right? It's not something where you have this new weakness that develops or this new symptom that develops and it just stays the same and you adjust to it and you move on. I think learning to live with the new normal while the new normal is always changing is the biggest challenge, not only for people living with ALS, but their family members and friends. How do they continue to care for themselves, and how do people care for others that are living with this disease, and how do we adjust? That's the biggest challenge, and recognizing that the symptoms are progressing.
I would say that the individuals that I see and treat who are living with ALS are some of the most resilient people I know. They're resourceful, they are kind, they're passionate, they're appreciative, and I think all of those qualities help to make what we view as this extremely challenging disease as a little bit easier. And the coping strategies of trying to get to that new normal are tremendous. Everything's more difficult when you're living with any neurological disease, and especially ALS, and so I think it's that coping and that adjusting to the new normal while that normal is changing and, if the normal is changing faster, it's more difficult.
And then how do we find that person that can help, right? And that may be a spouse, that may be a family member, that may be a friend, that may be somebody that we hire, but how do we find somebody that can assist and provide that assistance and provide that changing assistance? What I tell my patients always is that I really wish there were this ALS SWAT team, right? You get diagnosed with disease, the helicopter flies over, the ALS SWAT team repels out, and there's somebody who's going to modify your house, make a curb-free shower, make the doors larger for the wheelchair to get in, get the ramps installed, put the bedroom on the first floor, get you 24 hours assistance, continue to provide that income that you may be not getting because you can't work or a spouse can't work.
Our healthcare system's not set up for that and our society's not set up for that. I think this is the biggest challenge. We, as a health care team, these are the things and the struggles that we talk to with the people that we see living with this disease and for their family members and friends. It really takes a village to care for people with ALS, and we have what's called these multidisciplinary clinic teams. It's made up of lots of individuals that all help and help address a certain aspect of disease.

Dr. Correa:
We all learn from our community and I'm wondering what you've learned from those that you've cared for living with ALS and their caregivers, that you've applied to your own life and applied to how you connect and are thinking about health for your family.

Dr. Goutman:
What I've learned the most, from caring for individuals with ALS, is really resiliency, that these are sometimes individuals facing a really difficult disease and they're finding the joy and the hope in life in ways that I think, from the outside, you wouldn't imagine could happen. And I think that's a lesson that we can take, that we shouldn't be focusing on these small, frustrating things that happen in life, that these are just small little hurdles that we need to get over and get past. And we need to come up with solutions. People that I care for, I think, sometimes are really good at tinkering. There's a problem that they have and they come up with this personalized solution. I think that's a lesson that I've learned as well, to be resilient, to tinker, to try to develop our own personalized solution. I think that's one of the greatest lessons that I can take from caring for people with this disease.

Dr. Correa:
Stephen, thank you so much for taking the time with me and with our listeners, for the time that you take to take care of those living with ALS and support their caregivers and help them find the tools to build towards better joy and resiliency as they live with their condition and move forward with hope.

Dr. Goutman:
Thank you, Daniel, and to the Academy for really focusing one of these podcast episodes on ALS and all of the challenges that it has, but also the hope and where we're heading, and perhaps we do this again and see all the differences that have happened between now and the next few years.

Dr. Correa:
Thank you again and have a great day.

John Driskell Hopkins:
(Singing).

Dr. Correa:
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And Audrey Nath, beaming in from Texas and on Twitter at AudreyNathMDPhD.

Dr. Correa:
Thank you to our community members that trust us with their health and everyone living with neurologic conditions. We hope, together, we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Nath:
Follow and subscribe wherever you get podcasts.

Dr. Correa:
We'd really appreciate it if you could give us five stars and leave a review.

Dr. Nath:
Thank you.

Dr. Correa:
This helps others find the Brain & Life podcast. Thanks again. See you next week.

John Driskell Hopkins:
(Singing).

Hop on a Cure for ALS with John Driskell Hopkins

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