In the sixth episode of The Deep End, we’ll look to the future for Jon and his family and for DBS research. The research is pushing ahead, with a clinical trial of DBS for treatment-resistant depression that’s just begun. The first volunteer for that study had DBS surgery in early February. You’ll also hear about a before-and-after situation for Jon and Barbara, one that involves the evolving meaning of a beloved song.
Transcript
Laura Sanders: Previously on The Deep End.
Amanda: Like, I don’t feel like it’s, nothing I’ve done has ever changed who I am or my personality. Like, I’m still the same person. I’m just suffering more or less.
Jon: And so irritability for me was at like a six or a seven or an eight. Guess what? It’s still at a six or a seven or an eight. And so, like, my perspective to them on that is it’s not that the surgery didn’t work. I guess I’m just like a cranky middle-aged dude now, right? Like, that just is what it is.
Barbara: Yeah, like you can’t say his old self. There’s, he never, he never like wasn’t himself through this whole process, right? So it’s just, he is more comfortable and happy and relaxed and productive and present and engaged. So the things that the disease was trying to steal from him, he’s getting back. There isn’t that cloud hanging over us.
Sanders: So now, several years out from their surgeries, the volunteers I talked with are back to their lives. In today’s episode, we’re looking ahead too, to what’s next for Jon and his family, and what’s next for DBS. I’m Laura Sanders, and this is The Deep End.
These days, the Nelson house is bright, full of light and laughter and kindness. When I visited, they kept offering me way too much coffee and they insisted on putting their cool lizard Lizzie on my arm. Jon also insisted on taking pictures of it so I could show my kids later. The Nelsons are having a good time.
Barbara: You have to laugh. You can’t, you can’t not laugh at this and or anything in my opinion. But my son, my middle son said to me after, right after, said, “You know, mom, if you’re mad at dad, you can always hide the charger.” I was like, “Oh dude. That’s too far. That is too far.” So yeah, we, we have a healthy sense of humor in our household, for sure. Like, we’ll even joke, like, you know, we’ll say something like, “Oh my God, you’re crazy. I’m like, no, you’re, like, really crazy.” But like, you know, so we like to joke about it.
Sanders: This family jokes about hiding Jon’s charger and changing his settings. It’s all part of their routine busting on each other for all sorts of things.
When I was there, their middle son rated Jon a 10 out of 10 on the embarrassment scale. I won’t even tell you what he rated his mom. They joked about how us old people don’t understand slang like rizz, and no cap and stuff that slaps. Their youngest son stumped everyone with a riddle: What’s the only state that ends with a K? He didn’t say and neither will I. So for now, the Nelsons aren’t just looking ahead to better days. They’re having them.
As I reflect on all the people who have talked with me for this story, I keep asking myself why. Why were they so generous with their time? Why did they choose to tell me, and now all of you, about some of the hardest moments in their lives? Barbara Nelson is a private person, but even so, she’s been incredibly open about her family’s struggles.
Barbara: It never occurred to me not to. It never occurred to me not to share our story. And I’m not like a super out-there person. Like, I’m like, I’m very open about things, but I’m sort of private too. But I feel like because we know that so many people are struggling, that the more we talk about it, the better our society is. A hundred percent, this is a shift in the right direction. And I just think it’s really helpful to hear as either a caregiver or if sharing my story helps a partner be more empathetic or stronger or more resilient when trying to help, then that’s really good. Because if you can let go of all the armor and the importance of the appearance that everything’s great and perfect and actually take those steps, you can get better. And your life doesn’t fall apart. We don’t have less friends because we told people the truth. We have more friends probably. So I think that is, I never thought about why I might be willing to share our story. So off the cuff, I think that that’s why. Because your life can get better. I remember hearing somebody say once, “Your secrets make you sick,” and I never forgot that. And I think it’s true.
Sanders: Patient 001 has the same desire to let people know about his experiences, to demystify depression, to let people know that even in the bleakest times, there’s hope.
Patient 001: You’re so frustrated because you’re screaming out for help, and they just don’t understand. I feel that’s probably one of the reasons I’m talking to you, even though I want to do it anonymously. I really, I hope one day one kid reads what you’re writing and then he finds DBS and he’s cured because that’s what I did.
Sanders: Amanda shared a similar perspective.
Amanda: I think sharing my story is important, because it helps other people see the way. It’s kind of like a flashlight for people who are still in the dark. Like, “Here it is. I found it. Here’s the way out.”
Sanders: Playing a role in this research was something that resonated with Amanda, too.
Amanda: It’s really meaningful to me. I feel like I’m participating in something, that I’m contributing to something that really matters. That someday, because of this study and because of other studies, is going to change the lives of other people in an incredibly profound way.
Sanders: Amanda’s life has changed. That’s clear when she tells me about one of her drawings that she did after DBS.
Amanda: But you know the song “Somewhere Over the Rainbow?” It always irritated me because I’m like, “There is no “Somewhere Over the Rainbow.” It’s a pipe dream, okay? Pretty song, but a pipe dream. And I was like, “I found somewhere over the rainbow.” And I was like, “You know what? I’m going to build a house here.” So I drew a picture of a rainbow and there’s Cartoon Amanda and she has built a house on the rainbow. She’s like peeking out the door.
Sanders: What’s it, what’s that place like, you know, if you could describe it, if you’re, if so, okay, pretend you’re showing me the picture and like, here’s your house and what is that, what’s that place? Like, what are the, what are the things about that place that make it over the rainbow?
Amanda: It’s sunshine. So there’s lightness and warmth and, and, and like literal lightness, like you’re on a cloud. It sort of feels a little bit like that.
Sanders: These outlooks make clear the importance of hope. Of a belief that things can get better. A hope that the science will get better too, that our understanding of depression will get better, that it won’t be like this forever. Neurologist Helen Mayberg’s first paper describing DBS for depression appeared in the journal Neuron in 2005. We’re 20 years out from that. DBS is still in the research phase. It is not an FDA-approved treatment available to people who might benefit.
Mayberg: It’s that resignation of sorts that it isn’t enough to do it, repeat it, follow people. It hasn’t scaled.
Sanders: In its current form, DBS is not simple or easy, or even something that would be a good medical choice for a lot of people. That’s what Mayberg means when she says it hasn’t scaled. But science is often slow, and it almost never happens alone.
Mayberg: As a scientist, as a doctor, it’s not my job to save the world. It’s my job to save the people that I can save. And if I can only do so much, to know what I can do and know what I can’t do, but I can’t do everything, and I can’t take on that responsibility. That’s hubris and narcissism that I’d like to not claim.
Sanders: As advanced as the science is, there are still big questions to answer. Like why does DBS seem to work for some people and not others? How specifically does it change the brain? A new clinical trial announced in September of last year may help answer some of these questions. The medical technology company Abbott is funding a study that will include a hundred people with treatment-resistant depression. They’ll be recruited from all around the United States. All of these volunteers will get DBS. For the first year, half of these volunteers will have electricity flowing, and the other half won’t. And at the end of the trial, all of these volunteers will have the option of turning it on. The study has already started. On February 6th, a brain surgeon at Mount Sinai implanted a DBS device into the brain of the very first volunteer. This new clinical trial will hopefully clarify more about DBS and who it might work for. That’s the question that Mayberg wants answered.
Mayberg: The variance is in human beings. The variance is who the person is that develops the depression. And everyone is different.
Sanders: One of the things scientists are looking for are markers, ways to tell when someone is having a bad day or actually relapsing. Jon and Amanda are participating in follow-up studies, searching for signs of recovery in their brains. Scientists are looking for these signals in their body language and facial expressions, and even in their voices. In one part of the experiment, Jon spent eight minutes twice a day recording his brainwaves, along with video journals and daily, weekly, and monthly surveys. From data like Jon’s, Mayberg and her colleagues just described one such hallmark in the brains of six people who underwent DBS for depression. A collection of changes in brain behavior can indicate when a person has recovered. It’s a small study, but it’s progress, and here’s the thing, a deeper understanding of what’s going on in DBS could also point to the next kind of treatment. And that next, better thing might not even be DBS.
Mayberg: I’d like to spend my time trying to understand the biology of what we did, because it’d be a whole lot better if you didn’t need brain surgery and an implant. And I’m not the one to build a new contraption or miniaturize it or make it Bluetooth compatible. That’s for engineers and you have to have users to build more elaborate machines.
Sanders: Changing the behavior of neurons deep down in the brain from outside of the skull, it’s a very, very hard thing to do. Scientists are trying to figure out how to do this without brain surgery. They’re using electricity, light, ultrasounds, and magnets to get signals into the brain from outside of the head. Other approaches are miniaturizing the parts that do go inside the brain and coming up with easier ways to get them in there. One method, for instance, relies on these collapsible electrode grids that can be threaded up into the brain through the jugular vein in the neck. It’s wild.
These approaches all have their drawbacks, but technology is always getting better. Just think about the first heart pacemaker. It was an incredible piece of technology, but it was giant and clunky. Today, the powerful device can be smaller than a matchbook, and it sits near millions of people’s hearts, keeping them beating as they live their lives. The goal with DBS is similar: small, simple, seamless. For now, Mayberg says she’s in “realistic” mode, trying to find out what’s going to work for the most people. And getting there is a group effort.
Mayberg: And patients like Jon and Amanda and Emily, they’re our teachers. They’re our mentors. They’re our collaborators. The most fun part of this as a clinician is to have the patients focus my attention, to figure out what they’re saying. And then to actually get their feedback afterwards, there’s not even words to describe that gift.
Sanders: As Mayberg reflects on her career, she’s philosophical about what she and her colleagues have done and what’s left to do.
Mayberg: This, this is never where I expected to be. But you’re here, so step up. Why wouldn’t you step up? This is the experiment of a lifetime, you know? It’s even, if you, if right the second after this call I had to stop, I wouldn’t trade it for one second, but I’d sure like to see the last inning, right? And we’re all in, I’m all in.
Sanders: The Nelsons are in a better place now. Their place is full of laughter, jokes, teasing, but in a nice way. There’s a lightness to them, like Amanda’s house over the rainbow. When I was visiting, their youngest son was twirling and gliding through the kitchen on inline skates, going around the loop. He made it two full loops before Barbara kicked him out. The Nelson house is full of hope for a future that’s better than the past. Here’s Barbara.
Barbara: It just feels good to just be now. I’m really happy at the job I’m in. I’m excited about traveling and spending more time with family and friends. And that’s really what my focus is right now, and not trying to, like, advance in my career or have more. I just actually want less and just to like, there’s just this like sense of, like I say a lot, like, nothing really bothers me anymore. Like, there’s really very little that will, like, get under my skin, because I’m just so grateful for every moment. And when he had this surgery, I felt like, over those first few months was like, I don’t know how this is going to end up, but we got this. Like, we got this happy time. And even if that’s all we get, even if it was three months or six months of relief, that’s good. That’s cool. I’ll take that.
Sanders: After his surgery, Jon sent Helen Mayberg an email that he shared with me. It was mostly a note to thank her for her work, for saving his life. But he told her about a before-and-after situation. Years ago, he was away at an inpatient treatment facility. And he and Barbara would both listen to this one song, “Amsterdam” by Coldplay. He read me the email.
Jon: I could relate to it well to my situation, pre-surgery, about fading away, losing my mojo and just overall sadness, debilitating sadness. The sadness was warming and relatable to me, though. It wasn’t a negative thing when I was sick.
Sanders: He could feel the pain and the rawness in the song, and it made him feel his feelings. Not in a bad way, but in a meaningful way. Now, after the surgery, after DBS, the song has changed for him.
Jon: I now still listen to it a bunch and it’s changed into being about the joy of fighting through it all and coming out truly alive on the other side. It still captivates me, but with a new meaning and focus. Give it a listen. It’s a beautiful song. Much love to all. Thank you for caring. Jon.
Sanders: That change, that shift in perspective, that shift in his life, didn’t just happen to Jon. It happened to his whole family. With three kids and a packed schedule, Jon spends a lot of time in the car, shuttling kids to and from softball and field hockey, golf, basketball, ice hockey. On one of these drives, Jon and his youngest son were talking. He is still the emotional one. The kid who would crawl back up into Barbara’s womb if he could. Jon’s joke, not mine. He’s the one who gets deep.
Jon: My son, you know, driving home the other day from hockey, I always, I always call it car talk with my, my families that I coach. I’m like, “Guys, when car talk with the kids, emphasize these points for the game or this or that.” And he just gets, I mean, we’re in the car all the time because of hockey. But he was just like, “Dad, you know, like I, I’m so happy you just kept fighting for us.” Like, just these little comments that come out of nowhere. Like, oh my God, like, obviously they get it. They understand it. And it’s just a trip.
Sanders: We’re considering a bonus episode that addresses your questions, comments, and thoughts. Please send them to us at podcasts@sciencenews.org. If you or someone you know is facing a suicidal crisis or emotional distress, call or text the 988 Suicide and Crisis Lifeline at 988.
As we wrap up, I want to say a giant thank you to Jon, Barbara, Amanda, Emily and Patient 001. Thank you for talking with me and thank you for sharing your stories. Your perspectives opened a window into a world that a lot of us just look right past. Also, thank you for being so funny. I can honestly say that I didn’t expect to laugh so much reporting a story about depression.
We’re also grateful to the talented people behind the scenes that made this podcast possible. Beth Quill helped get this project off the ground. Luke Groskin made some amazing videos with Jon, Amanda and Barbara that you can watch on our YouTube channel. You can also find transcripts and photos at our website sciencenews.org. We’ll put the links in show notes. Our colleague Nikk Ogasa lent his voice to Patient 001. Abby Wallace and Mandana Tadayon ran our social media. Stephanie Kuo and Mike Russo from PRX guided us at every step along the way. Many scientists and clinicians, including Helen Mayberg and Shannon O’Neill, generously lent their expertise. We couldn’t have done it without you all. And finally, thank you for listening.
This is The Deep End. I’m Laura Sanders. If you liked this podcast, tell your friends or leave us a review. It helps the show a lot. Send us your questions and comments at podcasts @sciencenews.org. The Deep End is a production of Science News. It’s based on original reporting by me, Laura Sanders. This episode was produced by Helen Thompson and mixed by Ella Rowen. Our project manager is Ashley Yeager. Nancy Shute is our editor in chief. Our music is by Blue Dot Sessions. The podcast is made possible in part by the Alfred P. Sloan Foundation, the John S. James L. Knight Foundation, and the Burroughs Wellcome Fund, with support from PRX.
Episode 6 credits
Host, reporter and writer: Laura Sanders
Producer: Helen Thompson
Mixer: Ella Rowen
Sound design: Ella Rowen and Helen Thompson
Project manager: Ashley Yeager
Show art: Neil Webb
Music: Blue Dot Sessions, “Amsterdam” by Coldplay, “Over the Rainbow” by Instrumental City
Sound effects: Epidemic Sound, Mayfield Brain & Spine
Additional audio: Luke Groskin
Voice of Patient 001: Nikk Ogasa
This podcast was produced with support from PRX, the Alfred P. Sloan Foundation, the John S. and James L. Knight Foundation, and the Burroughs Wellcome Fund.