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This is the second episode of The Deep End. Explore more episodes here.
Depression impacts not only mental health but physical well-being as well. In this episode, Jon Nelson and volunteer Amanda open up about their personal experiences with mental health struggles. Their narratives are interwoven with a succinct overview of deep brain stimulation, an experimental treatment that utilizes permanent brain implants. Listeners will gain insight into how this research has evolved, facing both challenges and milestones to arrive at its present state.
Transcript
Laura Sanders: This episode discusses topics of mental illness, depression, and suicide. Please exercise caution while listening. Previously on The Deep End:
Barbara: He spent long hours in bed, often in darkness, or lost in endless television, while there was life happening downstairs.
Jon: That feeling of isolation can lead to dishonesty; sometimes you just want to avoid engagement.
Mayberg: Treatment-resistant depression is particularly heart-wrenching and often linked to high suicide rates because sufferers are acutely aware of their pain without any means of escape. Relief feels unattainable.
Jon: I could be the one leading a celebration, yet on my drive home, I’d contemplate crashing my car.
Sanders: Today’s discussion dives into the profound effects of depression on both body and mind. You may resonate with these experiences, either personally or through someone you know. We will also share the journeys of those participating in this innovative research. I’m Laura Sanders, welcome to The Deep End.
Jon: I felt a toxic presence coursing through every part of me, invincible and relentless.
Sanders: Jon Nelson’s struggle with depression extended beyond mental confines; it encompassed his entire being.
Jon: To put it simply, everyone can relate to the experience of chills and body aches during a fever. This, however, was a constant weight — an all-encompassing dread that felt like a suffocating shroud I couldn’t escape.
Sanders: His description is reminiscent of ancient beliefs surrounding depression, once tied to the term “melancholia,” which derived from the ancient Greek word for black bile — thought to be a corrupt fluid in the body. Treatment back then involved bloodletting. Fortunately, modern medicine offers kinder and more effective therapies, but some individuals, like Jon, still find themselves without support.
Amanda, another participant in the study, shared a similar struggle, describing her depression as a destructive vortex that consumed her. This turmoil has been a constant in her life.
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Amanda: I believe I was around 13 when I first experienced depression. At the time, I had no idea what it was; I simply remember feeling hopeless while sitting alone in my room at night.
Sanders: From then onward, Amanda’s path to healing was fraught with challenges. Like Jon, she has encountered multiple treatment options. Among them was transcranial magnetic stimulation (TMS) and administering ketamine, the latter of which gained notoriety following Matthew Perry’s untimely passing.
Amanda: Over ten years, I experimented with 21 different antidepressant medications, underwent TMS, received ketamine infusions, and even tried electroconvulsive therapy (ECT) 40 times. The ketamine offered temporary relief, but my body soon became resistant.
Sanders: ECT is often viewed unfavorably due to its historical context, having been associated with the dramatic portrayals seen in movies like *One Flew Over the Cuckoo’s Nest*. Nevertheless, it has undergone significant developments and can profoundly help those with severe depression. Amanda’s experience illustrates this; despite some relief, frequent treatments led to severe memory loss, prompting her to reassess her choices.
Amanda: While ECT provided marginal benefits, the frequency of treatments resulted in memory issues that became impossible to ignore. I became unable to recall simple things in my day-to-day life, which made me realize I had to stop.
Frustrated, Amanda fell into a deeper abyss, culminating in a suicide attempt. Fortunately, she was unsuccessful and subsequently hospitalized for six weeks, followed by an outpatient program where healthcare professionals acknowledged her exhaustive search for help.
Sanders: Their stories resonate similarly. Although Amanda and Jon faced different circumstances, both understand the weight of despair.
My first encounter with Amanda was through a Zoom call. However, visiting her vibrant New York apartment revealed a stark contrast to her struggles; her space was alive with colorful art, reflecting her identity as an artist.
Amanda: My art explores color and shape. I love circles — finding beauty in their simplicity. I also enjoy mixed media—melding photography with sketches into playful compositions.
Sanders: Among her artistic creations, a character named Cartoon Amanda embodies her spirit and enthusiasm.
Amanda: Cartoon Amanda mirrors me significantly, donned in a colorful wardrobe, expressing excitement and joy — a stark contrast to how I feel during my darkest days. I often use bright colors to lift my mood.
Sanders: Nevertheless, there came a point where no rainbow palette could ease her pain. Feeling desperate, Amanda turned to Mount Sinai’s treatment-resistant depression program. Her long history of unsuccessful treatments led her to consider deep brain stimulation.
Amanda: After a previous suicide attempt, I felt an urgent need for change. I believed this treatment might be my last chance, despite the inherent risks.
Sanders: As she learned about the procedure, Amanda reviewed the extensive disclaimer outlining possible complications. Yet, her determination remained firm.
Amanda: I read through every page without hesitation, knowing that I had to try something different.
Sanders: Armed with an extensive list of questions covering practical concerns and profound existential queries, Amanda approached her appointments with curiosity and hope.
The deep brain stimulation program she became involved with is vastly improved compared to its earlier iterations. This development involved piecing together decades of evolving research focused on the brain’s response to depression.
Mayberg: Depression profoundly affects individuals. Conversations with patients reveal the intensity of their experience. Our early investigations provided clear patterns of activity differences in the brains of those suffering from depression compared to those who were not.
Sanders: With this knowledge, Mayberg theorized that targeted electrical stimulation might alter the brain’s activity. Initially approved for tremors and Parkinson’s disease, deep brain stimulation sparked curiosity about potential applications for depression.
Mayberg: The hypothesis was logical—placing electrodes that targeted specific parts of the brain might yield benefits for those suffering from depressive disorders.
Sanders: In 2003, with the question of safety paramount, Mayberg’s team began their first trials. They chose a psychiatric nurse as the first volunteer, setting a precedent for what lay ahead.
Mayberg: The surgery unfolded smoothly, and my role was primarily observational, ensuring the patient’s awareness during stimulation.
Sanders: During this landmark trial, the team methodically stimulated various electrodes, seeking responses from the patient.
Mayberg: As we tested the different contacts, we were hoping to see a reaction triggered by increased stimulation. Most contacts showed no noticeable effects until we reached one that elicited an enthusiastic response.
Sanders: This unexpected reaction marked a turning point for the research team.
Mayberg: The patient expressed an unexpected feeling of relief, describing a “void” disappearing, which was both surprising and revelatory for our work.
Sanders: Those promising initial outcomes led to a larger clinical trial called the Broaden trial, which aimed to assess deeper implications of this innovative approach to treatment.
However, the results proved disappointing, with little difference observed between those receiving stimulation and those who were not.
Following these setbacks, criticism arose surrounding the financial motivations behind the trials, as some questioned the integrity of the research numerous times through this tumultuous journey. Yet despite these challenges, researchers continued to push the boundaries, striving for breakthroughs.
Mayberg: Progress was made through learning from failures, enhancing our understanding of the treatment’s efficacy through diligent investigation.
Sanders: Ongoing studies focus on imaging and long-term outcomes, progressively refining methods and addressing gaps in understanding as the field continues its evolution.
Mayberg: Our pursuit of knowledge can’t be rushed, but we are committed to accelerating our efforts to improve patients’ lives.
This comprehensive journey of research ultimately shapes the context for Amanda, Jon, and others involved in the 2022 trials.
Amanda: On the surgery day, I experienced minimal anxiety until entering the operating room, where the reality of the procedure hit me.
Sanders: Jon’s mindset was markedly different as he prepared for his surgery, unaffected by worries that plagued those around him.
Jon: The most challenging aspect for me was the emotional impact of shaving my head. I had always been self-conscious about it, but the surgery itself felt like a minor inconvenience.
Sanders: Jon’s wife, Barbara, experienced her own whirlpool of emotions, fearing the potential outcomes of the surgery.
Barbara: My anxiety was palpable; I constantly worried about the procedure’s risks and the possibility of life-altering consequences.
Sanders: Stay tuned for the next episode, where Jon will share his experiences and emotions following this groundbreaking surgery, including insights from Barbara about the changes that followed.
Barbara: There was a mixture of hope and fear — wondering whether this would bring positive change or not.
Sanders: If you or someone you know is in crisis or facing emotional distress, please reach out to the 988 Suicide and Crisis Lifeline at 988. Thank you for joining us on The Deep End. I’m Laura Sanders. If you enjoyed this podcast, consider sharing it with others or leaving a review — it significantly helps the program.
The Deep End is produced by Science News, drawing upon original research and reporting. This episode was brought together by a dedicated production team whose efforts shaped the narrative.
Episode 2 credits
Host, reporter and writer: Laura Sanders
Producer: Helen Thompson
Mixer: Ella Rowen
Sound design: Helen Thompson and Ella Rowen
Project manager: Ashley Yeager
Show art: Neil Webb
Music: Blue Dot Sessions
Sound effects: Epidemic Sound
Additional audio: Luke Groskin, Mayfield Brain & Spine
This podcast received support from PRX, the John S. and James L. Knight Foundation, and the Burroughs Wellcome Fund.
If you have questions, comments, or feedback about this episode, you can email us at podcasts@sciencenews.org.
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www.sciencenews.org