Jeff Bell: Lessons that OCD and its treatment have taught Jeff about navigating Parkinson's (#528)

Summary

The OCD Stories #528 – Jeff Bell: Lessons that OCD and its Treatment Have Taught Jeff About Navigating Parkinson's

Host: Stuart Ralph
Guest: Jeff Bell
Date: March 8, 2026

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Episode Overview

In this deeply personal episode, OCD advocate and author Jeff Bell returns to The OCD Stories after several years to discuss the intersection of his life with Obsessive Compulsive Disorder (OCD) and a more recent diagnosis: Parkinson’s Disease. Jeff shares reflections on lessons learned from OCD and its treatment, which have proven invaluable as he faces new health challenges. The discussion explores motivation, stoicism, advocacy, meaning, and identity, drawing wisdom not just for those with OCD, but for anyone navigating adversity.

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Key Discussion Points & Insights

Jeff Bell’s OCD Journey: From Childhood to Advocacy

• Childhood Origins of OCD:
  • Jeff recalls mental checking and rumination starting at age 7 or 8 ([02:31]), with a story of obsessing over the identity of a child who waved at him from a car:

    “I remember thinking at that moment, way back when, that I didn’t know why I needed to know, but it sure felt like I did need to know. So I think that was my first brush with mental checking.” ([03:26])

  • Experienced dormancy in OCD during high school and college, which he now views as “nobody has normal psychology anytime” ([04:34]).
• Emergence in Adulthood:
  • OCD resurfaced in his late 20s with checking compulsions—missing a quarter of a football game due to repeated return trips to check his car’s parking brake ([05:15]).
  • Early experiences with stigma—sneaking into therapists’ offices and fearing a “permanent record.”
  • Multiple therapists failed to recognize OCD:

    “No one or nothing could fix me. That was my mindset.” ([11:25])

• Discovering the Truth:
  • Breakthrough came from reading Dr. Judith Rapoport’s The Boy Who Couldn’t Stop Washing, recognizing his experience in others ([07:48]).
  • Beginning exposure and response prevention (ERP) and Cognitive Behavioral Therapy (CBT), but still missing the “why” to motivate change ([09:44]).

Greater Good Motivation & the Power of Purpose

• Turning Point:
  • Jeff describes a pivotal moment journaling for a year, recording successes and setbacks on 3x5 cards, seeking to eventually help others ([11:22]–[14:00]).
  • Only after finding “greater good” motivation—doing something constructive with OCD—did recovery accelerate:

    “Purpose and service can trump fear and doubt if we give them a chance to do that.” ([14:42])

• Implications:
  • Both host and guest reflect on how advocacy (e.g., the podcast) offers meaning and accountability ([15:48]–[16:28]).

Facing a New Challenge: Parkinson’s Disease

• Diagnosis Journey:
  • Symptoms began subtly post-COVID: loss of focus, monotone speech, “robotic” movements, and more ([17:17]–[18:45]).
  • Prolonged misdiagnosis and exhaustive specialist visits—paralleling his OCD experience.
  • Final diagnosis at UCSF, with recognition that he “knew nothing about Parkinson’s, much like OCD before it hit” ([21:12]).
  • Instinctively reached out to the Parkinson’s Foundation, similar to his first call to IOCDF for OCD ([22:30]).
• Applying OCD Wisdom:
  • Focus on what’s in and out of control, inspired by Stoicism’s philosophy ([23:03]), e.g.,

    “We can’t choose not to have the thoughts, but we can choose not to act on them.” ([23:18])

  • Adapting attitude and advocacy in Parkinson’s as with OCD:

    “If I really need motivation to get through Parkinson’s on a bad day, I need to figure out a way to help some people with Parkinson’s, whatever that’s going to look like.” ([28:52])

Advocacy & Service: Adversity to Advocacy (A2A) Alliance

• A2A’s Origin:
  • The nonprofit grew from Jeff’s realization that “we help ourselves by helping others.” ([25:15])
  • Empirical support for service, purpose, empathy, and resilience (the “empowerment coin” [30:10]).
  • The Pathfinder tool is being developed to connect people with ways to give back ([29:04]).
• Motivation Beyond Altruism:
  • Recognizing not everyone is called to advocacy, but living in alignment with personal values is universally beneficial (discussed with reference to ACT, Acceptance and Commitment Therapy; [31:21]–[32:15]).

Stoicism, ACT, and Psychological Flexibility

• Stoic Principles:
  • Both Jeff and Stuart have drawn on Stoicism’s focus on control and acceptance to navigate adversity.

    “There are some things that are up to us and there are things that are not up to us.” ([23:03])

  • Discussion on memento mori, Marcus Aurelius, and the power of reminders of mortality to refocus on priorities ([35:46]–[37:12]).
• Overlap with ACT & CBT:
  • Jeff notes that “greater good” motivation closely aligns with ACT, which he learned experientially and only later discovered in the academic literature ([32:20]–[34:05]).

Lessons on Identity, Stigma, and Universal Tools for Adversity

• Identity and Stigma:
  • Losing abilities (e.g., speech from Parkinson’s for Jeff, or hiding OCD as a public figure) brings humility and new empathy for mental health stigma ([44:09]–[47:40]):

    “You are not your OCD, you are not your Parkinson’s... We are people dealing with these challenges, but they don’t define us.” ([47:23])

• Community and Peer Support:
  • Power of community—IOCDF for OCD, Parkinson’s Foundation for PD, mutual understanding and connection ([38:45]–[40:10]).
  • Referenced “Tribe” by Sebastian Junger on how adversity unites people with shared purpose ([40:10]).
• Universal Lessons from OCD:
  • Facing uncertainty, breaking down problems, and using learned skills for new adversities ([41:10]–[43:51]):

    “The only way to navigate so much uncertainty... is to embrace that uncertainty.”

• Advocacy and Resilience:
  • Importance of advocating for oneself and proactive networking ([38:45]–[40:10]).

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Notable Quotes & Moments

• The Cruelty of OCD Logic:

  “We are acutely and painfully aware of how nonsensical they are. Right? And so I had no idea what was going on.” – Jeff Bell ([06:42])

• On Motivation:

  “For me, that took years to find, and I came to find that through what I’ve come to call greater good motivation.” – Jeff Bell ([09:54])

• On OCD and Parkinson’s Parallel:

  “If we can deal with this, we can deal with anything. And I believe that. I truly believe that.” – Jeff Bell ([17:16])

• OCD Community as Equalizer:

  “There are people that I might meet at a conference, and in five minutes they’ll understand things better in my life than people I’ve known my entire life.” – Jeff Bell ([39:35])

• Identity Beyond Illness:

  “You are not your OCD, you are not your Parkinson’s... We are people dealing with these challenges, but they don’t define us.” – Jeff Bell ([47:23])

• Advice to Younger Self:

  “Embrace it all... Acceptance, with the caveat that it’s not passive acceptance—it’s acceptance of what is and a determination to make the most of it.” – Jeff Bell ([51:26])

• On Purpose (Billboard Question):

  “Believe. It’s the opposite of doubt for me. The gift that OCD gave me was to learn to believe beyond my chronic doubt.” – Jeff Bell ([50:33])

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Timestamps for Key Segments

• Jeff’s Early OCD Story: [02:31]–[09:44]
• The Concept of Greater Good Motivation: [11:22]–[15:48]
• Parkinson's Diagnosis Journey: [17:17]–[22:30]
• Stoicism, ACT, and Control: [23:03]–[25:15]
• Adversity to Advocacy (A2A): [25:15]–[29:04]
• Discussion on Values, Service, and ACT: [31:21]–[34:05]
• Stoicism & Memento Mori: [34:32]–[37:12]
• Advocacy, Community, and Universal Recovery Skills: [38:45]–[43:24]
• Lessons from Parkinson’s Back to OCD: [44:09]–[47:23]
• Identity, Stigma, and Personal Worth: [47:40]–[49:21]
• Billboard Question & Advice to Younger Self: [50:02]–[52:21]

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Takeaways

• Recovery from OCD offers universal lessons—tools like embracing uncertainty, finding service and purpose, and focusing on what’s in one’s control—applicable to all forms of adversity including physical illness.
• Meaning and motivation beyond oneself are powerful in driving ongoing recovery, whether through advocacy, service, or alignment with deeper personal values.
• Communities of lived experience uniquely understand and support one another, offering solace, perspective, and strength.
• One’s illness or adversity does not define identity; personal worth and identity endure beyond diagnosis.

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Memorable Closing Reflection

“Honestly, at the end of the day, I just feel so blessed just to have an opportunity to have this purpose in my life, to be able to do something constructive with what life has given me.” – Jeff Bell ([50:02])

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Resources Referenced:

• The Boy Who Couldn’t Stop Washing by Judith Rapoport
• When in Doubt, Make Belief by Jeff Bell
• The Adversity 2 Advocacy (A2A) Alliance and upcoming Pathfinder tool
• IOCDF, Parkinson’s Foundation
• “Tribe” by Sebastian Junger
• Works of Marcus Aurelius, Seneca, and modern stoic writer Ryan Holiday
• “Freed Your Child from OCD” by Tamara Chansky

Related Themes: Purpose, values, stoicism, acceptance, community, advocacy.

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For anyone facing OCD, other adversities, or simply seeking inspiration, Jeff Bell’s journey, as recounted in this episode, offers a resonant message: your value is not your diagnosis, your suffering can be an engine for meaning, and sharing your story can help not just you, but countless others.

Transcript

[A]

You're listening to the OCD Stories podcast hosted by me, Stuart Ralph. The OCD Stories is a podcast dedicated to raising awareness and understanding around obsessive compulsive symptoms. I do this for interviewing inspired therapists, psychologists and people who have experienced OCD. Welcome to the OCD stories and welcome to episode 528 of the podcast. And in this one I got back on Jeff Bao. Now, Jeff hasn't been on for many, many years, but I consider him a friend and he's a wonderful advocate for ocd and in fact he's one of the earlier advocates that really laid the ground for many of us. So in this we get a recap of his OCD story, the idea of greater good motivation lessons OCD has taught him that helps him deal with other conditions such as his Parkinson's disease diagnosis, which is the bulk of the episode. We talk about the lessons he's he's learnt from ocd. We discuss stoicism, advocacy and service and much more. And thanks to our podcast partners, nocd. If OCD is interfering with your life, NOCD can help their licensed therapists specialize in exposure and response prevention therapy. The most proven therapy for OCD with NOCD, effective treatment that is 100% virtual, is available for children and adults with OCD. And most members can get started within seven days on average. No hassle, just real science backed help and support between sessions. Begin your [e-mail] or I'll put the link in the episode description. So it's always a pleasure to speak with Jeff and to see how he's navigating this new challenge of his and I appreciate his honesty and vulnerability. It's what made him and makes him a great advocate for OCD and of course now Parkinson's. And thank you to you guys for listening. As always, it means a lot. And without further ado, here is Jeff. Welcome back to the show, Jeff.

[B]

It's great to see you, Stu. It's been a while.

[A]

Yeah, it has been a while. We were just reminiscing a good eight, nine years, maybe seven, at least seven, if not eight. A lot's changed for both of us. So, you know, I guess for those that have never heard you've been on the podcast a few times in the early days. So for those that have not heard your OCD story, maybe just like an elevator pitch or slightly long elevator pitch of your OCD and then just really an update for those that are familiar with you.

[B]

Absolutely. So my OCD journey began as a kid. I was about 7 or 8 years old. And I remember walking down the street with my mother and my sister. A car drove by. A kid shouted out my name and waved to me. And the car kept going. I didn't know who the kid was. And the next day at school, I asked all my buddies, Steve, was that you? Greg, was that you? Mike? No. Nobody copped to having said hello to me. And all of this became a problem when I started replaying in my head the sequence of the car going down the street and hearing the kid's voice trail off like a train whistle. And I did this night after night. And I couldn't really understand what was going on, but it kept me up at night. And one night my mom walked down the HAL hallway and saw that I was still awake. And she said, why are you still up? And I said, I can't figure out who the kid was. And it took my mom a minute or two to put it together because I had asked her and my sister that day if she knew, if they knew who had waved hello to me. And my mom asked me a question at that point that became very pivotal for me. She said, were you afraid that this kid was trying to scare you or bother you in some way? And I said, no. And she said, well, why do you need to know? And Stu, I remember thinking at that moment, way back when, that I didn't know why I needed to know, but it sure felt like I did need to know. So I think that was my first brush with mental checking. Fast forwarding the story. I was kind of the classic kid who worries, and Jeff gets worried when he doesn't have enough to worry about. OCD was not really part of our vernacular. My parents didn't have the framework to know what to do with it, how to deal with it. So I'm going to fast forward to my late 20s, because I had a period of dormancy with the OCD in my high school and college years, which was really fascinating. I used to call those my normal years, but I've come to realize that nobody has normal psychology anytime. I mean, there are baselines and so forth. So that's sort of my baseline for non OCD years, but in my late twenties. The first episode I remember is I was going to a 49ers football game, was really excited about having tickets to this that a buddy of mine had gotten for us. Too cheap to park in the stadium parking lot. I parked about a mile away, started walking to the stadium. About halfway there, this thought pops into my head. Did you set the Parking brake. What if you didn't set the parking brake? And I remember thinking at the time, well, that's bizarre. It's not like I hadn't set the parking brake in the past, but it was a very disturbing thought. So what did I do? I turned around, I walked back the half mile to my car. I looked in the window. I saw that the parking brake was set. I felt better, started walking back to the stadium. About halfway there, for maximum inconvenience. Tap, tap, tap. It's what I would now call the doubt bully, saying, well, you looked in the window, but you didn't really feel the parking brake. To make sure it was in the upright position. Walked back, checked it out. The long and the short of all this, Stu, is that I missed the first quarter of this playoff football game that I was so excited about, and I had no idea what was going on. None whatsoever. As you and your listeners know, one of the sort of the cruel twists with Ohio OCD is that those of us who battle these obsessions and compulsions are acutely and painfully aware of how nonsensical they are. Right? And so I had no idea what was going on. And I tried to soldier on. But like so many other OCD stories that we hear, my OCD started going off in all kinds of different directions. And so I finally went to see a psychologist. And stigma was such a big part of that journey because I was so afraid of being labeled as somebody needing psychological help that I literally parked my car blocks away from the therapist's office and snaked my way through alleys. I must have looked like a burglar going through casing the area. And I went in and I saw the first doctor who I call Dr. X in my book. And Dr. X and I started off fine until he pulled out his yellow pad, his legal pad, and started writing things down. And at which point I became very close because I had this vision in my head that he was going to put something in my permanent record, whatever the heck that was, and it was going to ruin the rest of my life. So I saw Dr. X a few times, and he did not pick up on anything that OCD related. To be fair, I didn't share a lot with him on that front, but he was very quick to put a box around me, and he said, you, I think, have a fear of success. And that was based on the fact that I had broken into major market radio and was doing well, building a family and yada, yada, yada. And I'm thinking of psychiatric hang UPS Go. That's a noble one. I'm going to go with that. Yep, Dr. X. That's what it was. But of course it wasn't. I tried to soldier on, and life continued to spiral out of control. Went to see another doctor, Dr. Y, whom I've affectionately dubbed Dr. How does that make you feel? Because no matter what, I share with her, and at that point, the OCD was more refined, if you will. So I could tell her, you know, I keep driving my car in circles, or I keep checking the. The appliances, and she would lean across the table and say, well, how does that make you feel? Like, frustrated, ashamed, depressed, blah, blah, blah. But she never picked up on any of this. But ultimately, she stumbled across a therapy strategy that did prove very effective. She took vacation. Because while she was on vacation, the inner investigative reporter in me took over. I went to a bookstore, and I'm looking in the psychology section, and nothing seems to fit. I'm not battling postpartum depression, not suffered loss of a loved one. And then this book with a bright orange spine jumped out at me off the shelf. And it was the Boy who Couldn't stop washing, by Dr. Judith Rappaport. And you're shaking your head. I'm sure so many of your listeners are familiar with the book as well, but fortunately for me, Stuart, the first story in that book was a story about a guy driving down the highway who kept turning his car around to check to make sure that he hadn't run people over. I had been doing that, and the thought that somebody else was actually doing the same thing was so crazy that I think for a moment there, I thought, I don't remember writing this book. I couldn't even fathom that other people were doing what I was doing. And of course, the irony for me at that juncture was that I was working as a field reporter, and my job was to get out to the scene of a breaking news story as quickly and efficiently as I could and tell the story well. The storytelling always came easy for me, but getting out to the story became so difficult that unbeknownst to my bosses in those days, I started taking our news van out of the parking garage so no one would find out, parking it around the corner and taking taxicabs out to breaking news stories. A very costly, inefficient way to cover the news, by the way. But nothing was making sense. And then after I found this book, I went back and I saw Dr. Y. And she did not know what OCD was. To her credit, she called me the next day and said that she had been talking to some colleagues and that I should explore this. There's something to it. My first call, Stuart, was to the International OCD foundation, which, you know, changed my life. And one of the serendipitous arcs of my life is that I've been able to give back to that organization in some small ways as a board member and as a spokesperson for a lot of years, way back when. And then I started getting the right treatment, the cbt, the erp. And I'd love to tell you that everything turned around for me at that juncture. It started to, but it didn't because I was missing the why. And so much of my own advocacy in the OCD arena is talking about treatment motivation. Because for me, that took years to find, and I came to find that through what I've come to call greater good motivation. And we can talk about that later. But that was sort of my OCD journey to get to the right arena for getting treatment. And I feel very blessed that I ultimately got there. And it's just been such a. A gift from there to be able to network with people like you and our OCD community and, you know, learn how to navigate this. This monster we call ocd.

[A]

Yeah. Yeah. Thank you for sharing those. Those stories and, dare I say, highlights of the story. The highlight sounds like the wrong thing. Low lights, maybe, because it makes. It makes the OCD sound too good, doesn't it? So with the greater good motivation, why don't we just cover that quick, actually? Because obviously you have talked about it on the podcast before, I believe, but. Yeah, it'd be good to recap it and as an idea for anyone.

[B]

Sure, yeah. And it actually sort of sets up the second part of the story that we're going to talk about as well, which is just dealing with adversities beyond OCD. So in 1997, I was at my wit's end. I had been through five therapists on and off several medications. I'd read every book that there was out there on OCD and anxiety and yada, yada, and no one or nothing could fix me. That was my mindset. I was in my pity party years. And it wasn't about what I wasn't doing. It was about what the rest of the world around me wasn't doing for me. And I remember winding up in a backyard hammock. I was living in Sacramento. It was a hot, sticky night in August of 1997. And I remember looking up at the mighty heavens overhead from a Hammock I was in. And I remember blurting out these words, show me how to turn around this crazy life and I'll share my story with anyone who will listen. And I remember thinking, wow, where did that come from? And I waited a couple of days, and a little instruction book did not come drifting down from the mighty heavens, but something in retrospect, more profound actually happened. I turned that bargain on its head and I thought to myself, you know what? I'm in a good position to tell a story about getting better from ocd. In the publishing world, they call it a platform. Working in radio, I mean, I had a built in audience, I'm comfortable in front of people, I like to write. All of the check marks are there for going public with the story of getting better from ocd, except for one. I had no success story to share. And I'm very glad that I didn't go public at that particular juncture because my message would have been very off of what I wanted to convey ultimately. But what I did is I decided to journal for a year. And I did it in a very OCPD kind of way, in the sense that I wrote everything down on little three by five cards and stacked them all over my house. I tracked all my successes in standing up to compulsions, all my setbacks, all the lessons I learned along the way. Highlights, Lowlights, as you put them. And I did this for exactly one year, and nothing magical happened over the course of this year. I went back and I saw the therapist that I had dismissed early on because she couldn't fix me. And I said, I'm ready to do the hard work. And she said, if you're not, we're just going to be wasting your time and money again. I said, I'm ready this time. And what was different, Stuart, was I had the why. And whereas I didn't know what it was at that juncture, it's what I've come to call a greater good. Something bigger than the perceived good of removing anxiety through compulsions. And that greater good for me was I was going to do something constructive with what I had been through. And so I journaled for a full year. And at the end of the year, lo and behold, I was not cured of ocd. I never used that term for my own journey, because I don't feel cured. I feel like I learned to navigate the OCD journey. And my doubt bully was right there to say, look, there are still things on your obsession cards and your compulsion cards. You're not cured. This failed. But I realized that I had come so so far, and the only real difference was that I was keeping the cart before the horse in terms of finding purpose and service through my improvement. From there. Real quickly, I went on to string those three by five cards together over the next year into a really, really bad first draft of my book that ultimately came out in 2007. And then over the next nine years following that, I rewrote and rechecked and re. Rewrote and rechecked draft after draft. And finally in 2007, I published Rewind, Replay, Repeat. And then what I found was that the more I got out there and shared my story, stronger I got. It was that continued motivation. It sort of validated or corroborated the whole basic premise that purpose and service can trump fear and doubt if we give them a chance to do that. And that's when I started networking with other people in the OCD community and then ultimately people outside the OCD community who are battling other forms of adversity and talking about how we can take this framework of choosing greater good over the perceived, quote, unquote good, of doing compulsions and relieving anxiety, and built a framework around that that I've been working with and using ever since.

[A]

Yeah, no, I love that. I mean, that's a really important message, I think, for humans generally, but definitely in the recovery process of ocd, like, as you say, that greater good, finding meaning, purpose. That's what I did with the podcast. You know, it really helped me. It gave me a reason to do the episode every Sunday, even. Even I didn't want to or I was ill or whatever. I had to put it out in. It kind of gave me a reason beyond myself to. To push.

[B]

I was just about to ask you that, Stu, if you found that you've experienced something similar over the years, and it sounds like you have, that. That has motivated you to do the hard work of ongoing OCD recovery.

[A]

Absolutely. And now, like, being a psychotherapist ties in perfectly because I want to help people. But in the early days of the podcast, it was. It was the thing leading me, you know, it gave me a reason to keep going and keep pushing and keep trying and learning. And I. I held me accountable, I guess, in a good way. And I. I like that. But, yeah, no, thank you for sharing that. So today we're going to talk about kind of, I guess, the next chapter in your life or some changes and just lessons you've learned from OCD in battling other health conditions. And if you want to Share what that health condition is. You can. And just take it away, and I'll follow your lead on. On where you want to go with it.

[B]

Thank you. And. And sure. I'm. I try to be an open book both about the OCD and my new challenge in life, which is Parkinson's disease. And I'll walk you through the. The way that unfolded for me. And then I'd love to share some commonalities and in battling the two adversities and some lessons specifically that OCD has taught me, because I think most of us who have been on this journey with OCD recovery, it's such a tough journey that I think at some core level, we realize if we can deal with this, we can deal with anything. And I believe that. I truly believe that. So In June of 2022, I was ready to wrap up my radio career. I had been doing radio for about 30 years, and the last year, Covid really threw everything off, too. But beyond that, the last year, I was just off my game and I couldn't figure out what was going on. I was having a lot of trouble concentrating, a lot of trouble staying focused. People noticed that I was staring off into space. I was walking like a robot. And I remember walking through the newsroom one day at KCBS where I was working, thinking, people are going to be staring at you, Jeff. You just. What's going on with the way you're walking? And then very subtle things like my voice started softening and becoming more monotone, which is. Is still to some degree the case today for a guy who made his living talking on the radio for all these years. And I didn't know what the heck was going on, but I knew it was time to kind of hang up the headphones, so to speak. I didn't want to watch my. My skill set diminish that much more. So I decided to retire and then began a year's worth of. Of testing and seeing specialists to try to figure out what the heck was going on. I saw a neurologist several times. I saw a neuropsychologist, a sleep specialist, an ear nose, throat specialist, did a brain mri, sleep studies. I mean, one thing after another. And it was only on the third visit, I believe, to the neurologist, where everything started coming together for her, which was fascinating because in some ways, it's parallel to the journey of ocd. I mean, and I don't. And you can give me a better perspective on where we are in, you know, 2026, relative to when I went through all of this. But the misdiagnoses and, you know, the misdirections in terms of addressing all this, the missed opportunities along the way. So it took a full year for the neurologist to put everything together and say, oh, wait a minute. The walking, the frozen shoulder, which was rigidity, the facial masking, as it's known in the Parkinson's world, where I kind of. The facial muscles start weakening, and so I just sort of stare off of this space. Swallowing issues and then a tremor, which was the more obvious one that ultimately came up, because that's what we tend to think about. And it was also very sobering for me to realize how little I knew about Parkinson's disease, much like how little I knew about OCD before it impacted me personally. And I always kind of look at that disconnect because as a guy in the media, for most of my career in the news business specifically, I mean, I was paid to know a little bit about a lot. And I did stories about Parkinson's disease. I'm sure I did something on Michael J. Fox and all the work that he was doing. I know I did stories about local academics who were working on research and whatnot around Parkinson's, but I had no idea what it was. I mean, had I, I probably would have recognized or at least asked the questions. It was never on my radar to even ask a neurologist about that.

[A]

This.

[B]

And that's sort of the same with the ocd. So that sort of drives that whole quest to help raise awareness of both PD and OCD. But ultimately, in, I think, September or October of 2023, I got a formal diagnosis at UC San Francisco of Parkinson's disease and was able to get with a movement disorder specialist who, you know, verified everything and made the official diagnosis, but also put me on some medication that made a huge difference. And. And that also was a very interesting parallel with. With ocd. When I think about how much I fought medication for ocd, I didn't have that same fight with something for physical. And I thought, well, that's interesting. You know, isn't that interesting how we look at those differently? But there was another great parallel where I started. I instinctively, I don't remember this. Doing this in the same kind of way that I did with the OCD call to the iocdf. But I thought, I don't know anything about this disorder. And I called the Parkinson's foundation, and in retrospect, had a very similar experience. Somebody at the other end opened the door to that community for me. And I'm now doing some work with the Parkinson's foundation, and that's fabulous. But I think the biggest thing that I realized early on was that OCD for me, became about what was in my control and what was not in my control. And I decided I was going to apply that same framework to dealing with the Parkinson's disease. And, Stuart, I know that you have at least some interest in ancient stoicism because you had a podcast, I think, several years ago with Donald Robertson.

[A]

Yeah.

[B]

And. And as you know, one of the central tenets of ancient stoicism is there are some things that are up to us and there are things that are not up to us. And sort of the. The key to navigating life is to focus on those things that are up to us. And so I often draw the parallel that, you know, for those of us with ocd, we can't choose not to have the thoughts, but we can choose not to act on them. We can choose to see them for what they are. And the stoics also talked about the power of ascent, you know, assenting to impressions. So if there's the thought that tells me my hands are dirty, I need to clean them. I don't need to argue with that thought, but I can call it out as just a thought. And so there's that part that's in my control. There's the actions of not doing the compulsions that are in not my control and not doing the compulsions that is in my control. And so that was really helpful for me, and I just started drawing some parallels. You know, in. In the Parkinson's world, I can't choose not to have this disease right now. I got it. For whatever reason, I got it. But I can choose my attitude in responding to it. I can choose to exercise as a way to addressing some of the motor challenges. I can choose to do something constructive with it. I. I know from experience that advocacy provides purpose, so what the heck, why not try to share my story in this arena if it's helpful? And. And so those were some of the parallels that pulled everything together for me. And, yeah, I'm going to stop talking and let you ask some questions here, because I'm babbling on.

[A]

Yeah, no, you make a good point. It's like you. You can't help having Parkinson's. So if you've got to have it, I don't say make the most of it, but, you know, I mean, like, I do the same with ocd.

[B]

If you.

[A]

You have ocd, obviously you treat it and work on it, and all of that, but it's like, yeah, how else can I. What was your initiative? Adversity to Advocacy. Right, yeah, yeah, yeah.

[B]

Thank you for asking about that. And that sort of pulls together a couple of these pieces, and if I may, maybe I'll talk a little bit about that and how that arc came together. So backing up the story to about 2011, I think it was when we first started putting together a 2A adversity to advocacy, which is a nonprofit now in its 15th year. And that grew out of the experience that I had, learning that we help ourselves by helping others. What you and I talked about earlier, Stu, that, you know, for both of us, this is part of our ongoing recovery. This. This is motivation, the opportunity to help other people and feel that sense of purpose through service. And. And so I became fascinated when I started networking with people outside the OCD community that were experiencing the exact same thing. And I wound up writing, writing a second book about that called when in Doubt, Make Belief. And it was just basic lessons from OCD about this whole concept. And after the book came out and there was interest in exploring this as a nonprofit, was able to get together with some terrific people and put together a 2A, the adversity to Advocacy Alliance. And we are a network of dozens of what we call leading adversity driven advocates, meaning we're established, we've been doing this for a while in our own arenas. So cancer survivors helping other cancer survivors, folks with ocd, helping others with ocd, folks with life challenges helping others with similar life challenges. And there's just something really special about paying forward what you have received in your own recovery, especially to people who are dealing with something similar that you, through your own experience, your lived experience, are uniquely qualified to help with. We sort of have a. Or we have a Venn diagram that sort of brings together four different elements that are part of empirical research these days, and they're purpose, service, empathy, and resilience. And what we like to say is that when we use our empathy to be of service to other people with similar challenges, we derive a sense of purpose that in turn fuels our resilience. And so over the years, we've told hundreds of stories. We had a national spotlight feature that we did for years where we told stories of people like yourself who have turned some form of adversity into some form of advocacy. We've networked people, and our current project right now, as we kind of retool after the pandemic, is we're building a program we call Pathfinder and It's an interactive tool that lets people discover their own path from some form of adversity or some form of advocacy, helping facilitate that connection, that nexus, and helping point people to established organizations that are looking for folks to get involved and help, you know, be of service to those in their community. So through A2A, I had been exposed to a number of people dealing with various adversities. In fact, at one point, I did a feature on a gentleman with Parkinson's disease. I didn't even realize that until after the fact. It's kind of like used to. I'm sure after all these years, you probably almost lose sight of some of the segments you've done. Like, did I do that? Yeah, I did that. Had to go back and check, but never, ever imagined that would be the case. But, I mean, I would be a hypocrite to not go right to this notion that if I really need motivation to get through the Parkinson's on a bad day, I need to figure out a way to help some people with Parkinson's, whatever that's going to look like. So that's sort of that nexus between OCD, A2A, and the Parkinson's journey.

[A]

Yeah, yeah, it's really good. And I think that Pathfinder tool is going to be very useful because I was speaking to many people over the years that, like, I want to give back or I want to do advocacy, but I don't know where to start or how I can be of service. So I think a tool like that would be really useful. And yeah, as you say, and I mean, yeah, as we. If you want to get into advocacy, like, as you do advocacy, it just. It adds meaning and quality to your life. And, you know, for me, I wanted my life to be of service and have meaning and purpose, and not everyone wants that, and that's okay. But for me, I felt like I needed it, you know, and that makes my life rich. And at the end of it, whenever that is, I'll hopefully look back and be like, wow, you know, I spent my life well.

[B]

Can I jump in with something, Stu? Because you just raised something really important, I think I remember being at a book signing once, talking about purpose and service, and a guy came up to me, very, very earnest guy, and said, I have a problem with all this. I said, tell me. And he says, I don't like people. And I said, I appreciate your candor. He said, I'm a loner. I, you know, do not feel like my calling is service. It doesn't speak to me. So how Can I use your framework? And I say, it's purpose and service. And this was a gentleman with ocd. And I said, would you grant me that your purpose in life was not to be born, spend 80 years following your obsessions and doing compulsions and then moving on to the next life or whatever is waiting us after that? And he says, well, no, I've got a bigger purpose than that. I said, well, tap into that. And so really, they're opposite sides of the same coin. They're what I call the empowerment coin. For you and me, we've sort of come naturally to service speaks to us, but we derive a sense of purpose through that service. People can derive a sense of purpose without necessarily doing the service by empowering themselves along the way, learning new languages, figuring out how to, as you put it. This is what triggered that for me, is, you know, a life well lived. You know, what can I do that is going to, at the end of the day, at the end of the lifespan, allow me to look back and go, yeah, I made the most of that.

[A]

Yeah. Yeah, exactly that. Yeah. And yeah, like you say, if you and I, we were drawn to it, and not everyone's going to be that way and nor do they need to. But that's why I like acceptance commitment therapy, because a big part of that is knowing one's values and figuring them out, knowing what matters to them, where they want to head the values could be, I want to. I want to be a really good parent, you know, and. And so then they dedicate their life to being a really good parent, you know, and that's what makes their life meaningful and special. And if we think of that, you are then still serving. You're serving your family and your kids. But yeah, I think that's what gives us as humans, we. We feel good when we're. We're living in alignment with our values and whatever that is. Definitely. Yeah. Rather than get. We get fixed on the diagnosis and then we lose sight of life.

[B]

Yeah.

[A]

You know? Yeah.

[B]

So one of the really cool things that sort of emerged from all this for me is that you and I, and, well, now you're working in. In the field itself. But prior to that, when you were working on your own journey first, and so many people that you've profiled over the years on the podcast, we've learned experientially, I think these principles that I'm talking about, that we help ourselves by helping others. But the empirical science that's coming out about all this is just phenomenal. And I wanted to circle back to Stephen Hayes and act. Because when I published the first book and started talking about this whole notion of greater good motivation, people would say, oh, you're a big fan of act. And I said, what's acting? I mean, this was the school of Hard Knocks. And the parallels between it and acceptance and commitment therapy were so strong that several people came up to me and said, you know, this seems very similar to act. So I actually reached out to Stephen Hayes when I was writing my second book, and he was so kind and actually wrote a little Q and A blurb with me or a little Q and A segment for the book. And I love the fact that what I learned, and so many people have learned through the School of Hard Knocks experientially is supported by science. And that's true in a bigger picture. The whole concept writ large in that there are now all kinds of academic studies that take a look at the power of purpose, the power of service, the power of empathy, the science of resilience. And so I love that there's this coming together because I think that I'm somebody who's always struggled with the notion that there needs to be some empirical evidence to support what I. What I'm experiencing. And that's come together.

[A]

Well, yeah, no, yeah, you're right, 100%. And, yeah. Thinking about back at your books and in your earlier work. Yeah. Well, let's say lines of Act. But we think like ACT isn't anything new in terms of what they say has been said in other philosophies over the years. But then ACT kind of tied it. Tied it together. Speaking of stoicism, that's Marcus Aurelius behind me on the screen.

[B]

I thought that might have been when I saw that. Yeah. Can I ask you a question, Stu?

[A]

Yeah.

[B]

Tell me how. How stoicism has impacted your own recovery in whatever ways that you could share. Because I don't know many people in the OCD community that have discovered that as sort of an ancillary tool. And I'd love to hear what you would you have to say?

[A]

Yeah, I mean, it's been a long time since I've read Stoicism. Like I read Marcus Reis book Meditations and Seneca's on the Shortness of Life, I think it is. And I was reading Stoicism actually at time, probably just before I started OCD recovery or definitely advocacy, because I was just trying to make sense of my own struggle. And. And I liked. I was drawn to Stoicism. Stoicism in the way they Just navigate things and it has acceptance in it. And talking about how we view the world kind of changes our world in some way. So I've already thought about how it. I think it's just embedded in who I am. And I try to be stoic and I'm not quite sure it definitely affects me, hence why I've got the skateboard. But. Oh, the other.

[B]

Oh, that's a skateboard.

[A]

Okay, I see as a skateboard. Yeah, it's a UK skate brand and they did this like philosopher series of graphics, so that's cool. Actually, one thing I carry around, this might trigger some, some people with existential themed OCD or deaf anxiety or anything like that. But you know Ryan Holiday. I do, yeah. So he's got the Daily Stoic and he, he's got that, a coin he made, which is on one side, it says, yeah, memento moray, which is remember, you too will die. And on the back it says, you could leave life right now. And I carry that in my coat pocket just as a reminder of every day. One, that one day I will die. But two, because I think, as Marcus Rayleigh said, you could leave life right now. Let that define what you say, do and think. And, and I just love that as a reminder of if I'm in a bad mood or if I'm getting stuck on the wrong thing, I can feel that coin and remember, you know, I could leave right now. Is this really worth it? Like what I'm worrying about or what I'm stressing about or how I'm speaking or acting or, you know, getting angry with my kid or my wife, or is, is that how I, if I left right now, would I be happy with that? So it's that, that sort of. That maybe that's a good answer of how stoicism sort of.

[B]

Yeah, There's a lot of wisdom in that ancient philosophy, man. Not all of it resonates with me. I mean, there are things that seem very dated or out of my, out of sync with my own thoughts. But for part, I just love the whole concept of focusing on what's in our control. So, yeah, thanks for sharing that. And it's interesting how it ultimately came to shape cognitive behavioral therapy, from what I understand as well.

[A]

So, yeah, it did. It's very, very influential for, for them in the early days and other therapies. Yeah, that's what CBT is trying to do, right? Change the way we think and act and feel.

[B]

So a couple of other things that have bubbled up for me in terms of Parallels between the OCD journey and the PD journey beyond. The whole motivational part of it is just I had to advocate for myself, and that's such an important lesson in both journeys, I think, for all of us to remember that, you know, I had people dismiss the OCD symptoms early on that. That didn't pick up on what they were talking about. Professionals. And again, this is going back a lot of years, and I like to believe that the level of awareness of OCD is much higher today and people wouldn't necessarily be misdiagnosed. But I'm sure you hear from people that are still today.

[A]

It's definitely. It's definitely better. Even in the 10 years I've been advocating, it's way better, but it still happens more than it needs to. So we're not there yet, but definitely better.

[B]

So just the whole idea that we need to advocate on our own behalf is really important. And then the whole sense of community, I mean, even beyond being of service to other people in our community, which is a big part of the motivation piece of it, there is something so powerful about networking with others in our community. I mean, Stuart, you and I haven't talked in years, but I feel like we're just picking up a conversation that we did have 10 years ago, whenever it was. And there's something, Something magical about the IOCDF conferences, for example, where you just network with people because there's this OCD is a great, great. What is, what. What is that term called when you level the playing field? Equalizer, I guess you call that because, you know, there are people that I might meet at a conference, and in five minutes they'll understand things better in my life than people I've known my entire life, or in some cases even spouses or dear friends who, with the best of intentions, have tried to understand what's going on. But there really is something powerful about networking with people who can understand that. I'm finding that same thing in the Parkinson's community, and I think that exists for any sort of adversity arena. So not only advocating for oneself, but also networking with other people. Because, I mean, a big part of this whole process is just saying, I need to talk about this with somebody.

[A]

Yeah, I agree. I think there's a really good book I read years ago called Tribe by Sebastian Younger. I think he was. He was like a war journalist. Maybe he still is, but. And he. He looked at. He just what he noticed when he was viewing wars, and then he looked at historic data and he found in times of war, like World War II in Britain, people really came together and actually mental health rates were much lower. Now you've got a question. Obviously, reporting may have been a bit off during that time because people more preoccupied with fighting, but there's something about, in times of adversity, we come together and we forget all the other differences. And I think it's the same with OCD at the conference and obviously Parkinson's. When people are suffering, all this other stuff just fades away. And it allows people to unite, I think much better when they have like a common enemy maybe, or a common focus.

[B]

Definitely. Most definitely. You know, it's interesting, Stu, over the years we've come to be very careful about not ranking difficulty levels for adversities. I mean, that's just not a cool thing to do. But that said, there is something especially exhausting and ever present about ocd. There's no question about that. We hear that from everybody. And I think that that sort of gets back to if we learn how to deal with the ocd, there's so much more we can learn to deal with. I mean, some of these principles are just universal beyond motivation, which we've been focusing on, just the whole notion of, you know, what one needs for inner strength, what one needs for recovery. You know, if you've been through this with OCD and it's all encompassing, apply that same principle to what you're dealing with. And that's not even just necessarily health challenges. It can be life challeng know, dealing with lack of promotion at work or whatever the social situation might be. I, I just find that there are some very universal skills that we learn through exposure, response, prevention, treatment. For example, the whole idea of facing down our fears. I mean, I, I, I love that. There's a great metaphor in the book freeing your child from OCD by Tamra Chansky. And she uses a swimming pool to talk about anxiety. And you know, she talks about how when we're kids, we get into a cold swimming pool and the water is really cold and our brains are yelling at us, you know, get out, get out, get out. We're kids, so we don't, we stick around, we splash around and lo and behold, the water warms up. No, the water didn't really warm up. We acclimated to it. And I think that's sort of the paradoxical takeaway for me from erp, which is really the only way to navigate so much uncertainty, whether it's OCD uncertainty or uncertainty about your other health challenges or uncertainty about life, is to embrace that Uncertainty. Right. It's paradoxical. But, you know, if those of us with OCD learned that we need to stay in that pool, to habituate to it, to get used to the discomfort of the anxiety, I think there are all kinds of lessons for people dealing with all kinds of adversities.

[A]

Yeah, 100%. That's, that's a really good way of looking at it. So there any other lessons you want to go over or talk about?

[B]

I, I think we've covered the, the most important ones. I, I, I just, I really want to encourage people to, you know, take advantage of what they've learned through their OCD recovery, because I really do think that there are a lot of parallels.

[A]

Absolutely, absolutely. And is there to flip the question? Is there anything I know relatively new to Parkinson's? I guess it's been a few years now. Right. Is there anything you've learned from this newer journey of Parkinson's that's helped you view OCD in a different way?

[B]

That's a great question. Yeah, it has. I mean, I, I, prior to this, I have never dealt with physical challenges before. My sister has rheumatoid arthritis and has been incredibly brave dealing with that since her teenage years. And I've always thought to myself, gosh, that must be really hard to deal with the physical aspects of things. And it is. But again, I think for me, it brought back the whole notion that dealing with the physical challenges is really the same approach as dealing with the mental anguish of ocd, for example, you just need to break it down to its core and say, what's going on? But yeah, it's, it's been humbling. And I'll share something what I didn't see coming. And this has been very helpful for me in terms of stigma with OCD. I made my living for 30 years communicating, and PD is robbing me of that. I, I, my processing slows down quite a bit, which is part of the Parkinson's umbrella. Under the Parkinson's umbrella, I can feel when my medications is wearing off. In fact, that's sort of happening right now. So I'm going to take a little bit longer to choose words and whatnot. And it's been very humbling because that's something I've just taken for granted my entire life. That's always come easy for me. Storytelling, being comfortable in front of people. And, you know, the stigma of ocd, I hid from that for so long, you know, living this elaborate double life as a fairly public media figure who was secretly battling these, you know, ridiculous compulsions and there's a parallel there now with the pd, where, you know, when I go out and my head is shaking or my leg is trembling or I'm just staring off into space or I'm having trouble finding my words, I think these people don't know I have Parkinson's. They must just think I'm, you know, losing my edge, or it just becomes, in a very vain kind of way. It's been hard to watch that erode, and it gives me a new appreciation, I think, for a lot of people with OCD who have not felt as comfortable coming out and talking openly about their own journey through the mental health world. You know, I think that there is an element of stigma, an element of personal identity that that is. Is really challenging on both sides of that physical mental health coin. And then identity is. Is a big piece of this, too, that. You know, for the longest time, I was the radio guy, and then I. I gave up radio. I'm not the radio guy. I was the OCD guy. You know, and now I'm dealing with this PD thing. You know, who. Who am I? And I. And I think that a lot of people with OCD or other mental health challenges navigate that. Some. That same challenge. And I think that the one lesson that I want to put out there for everybody from my own experience is that we are not either of these things. You know, you are not your ocd, you are not your Parkinson's, you're not your cancer, you're not your als. You know, any of these adversities right down the line. We are people dealing with these challenges, but they don't define us.

[A]

No, no. 100%, you. I was thinking, as you're saying, that with, like, the pd, the ocd, the radio guy, all of those are your identities, but equally, you're the thing behind all of those. Like, you're bigger than all of it. You're Jeff with Jeff's characteristics, values, personalities, and you have brought that to each of those things. How you navigate pd, ocd, and how you did well in your career. You know, it's that, I guess, remembering we're more than anything we do or have or experience.

[B]

I think I need to record what you just said or go back and pull this from the podcast and just put that on a loop and listen to it every day. Because that was really helpful. Thank you.

[A]

No worries. No worries. Yeah, I just. Yeah, I think it's. Yeah. I don't know. It's just something about me and for my clients, remembering. I don't know. Especially when people get attached to their careers and something doesn't go well in their career or in academia or whatever else, then they get really down, rather than. You're not those things. You're something greater than that. Yeah. You're doing the academia or doing the podcast or doing the, you know, radio or. I guess. Yeah, we're the gift of the world. Not what we do, just who we are, because who we are creates those things. Yeah, I don't. I'm formulating it in my mind, but, yeah, I like that. Thank you. But, yeah, I mean, look, obviously it's. It's. It's hard that you've. You've been given this diagnosis, but I'm glad you're navigating it the best you can and obviously trying to help others in the process.

[B]

Thank you. And I want to make sure that I'm coming across as feeling very blessed by all of this and even the challenges of OCD and Parkinson's. There is nothing unique about my journey. I know that so many people are dealing with multiple challenges in their lives, OCD and this cancer, and that it's just part of our journeys. And I don't want to diminish any of the challenges. They're difficult for all of us. But I honestly, at the end of the day, I just feel so blessed just to have an opportunity to have this purpose in my life, to be able to do something constructive with what life has given me.

[A]

Yeah, yeah, spot on. Yeah, well said. Well said. So towards the end, I just want to ask you a couple of questions that I would have asked you all those years ago, which is you've got a billboard near where you live. What do you want written on that billboard?

[B]

Oh, to remind me, Is that what you mean?

[A]

Could be to remind you or to remind the world. Yeah. What message would you just want written on a billboard?

[B]

Believe. I think we can all put our own framework around that. For me, it's not necessarily believing in a particular entity as much as just believing beyond the flawed processing of my doubt.

[A]

Yeah.

[B]

It's the opposite of doubt for me. It's what I've. The gift that OCD gave me was to learn to believe beyond my chronic doubt.

[A]

Yeah. So as your book says, when in doubt, make belief. Yeah, yeah, yeah. And I will put a link to your books and a. To a thank you in the show notes for anyone listening. And then I don't know if I would have asked you this, actually, but I'll ask it. So if you could pick up the phone and call the 20 year old you, what would you tell him?

[B]

Wow, that is a great question. The 20 year old me, embrace it all. You know, going back to our stoic thread here for a moment, you know, the whole notion that's grown out of stoicism in modern times is amor fatih, you know, which is basically lean into what life gives you is the way I interpret that. And when I think back on how much energy I spent fighting what happened along the way, I think acceptance, with the caveat that it's not passive acceptance, it's acceptance of what is and a determination to make the most of it. I'm not sure the 20 year old would have listened to that at all, but that's what I try to tell him.

[A]

Yeah, it's a really nice message. And that's the irony. I don't know if irony is the right word, but of this question is, would any of our younger selves have listened? Yeah, some of them would have, but many maybe not because we have. Isn't it funny ourselves? Right?

[B]

Yeah. Isn't it funny how the 20 year old thought he had everything figured out? And I think the older we get. Speaking for myself, the more I realize I. I barely know anything. I'm just figuring it out as I go.

[A]

I agree. Yeah. Yeah. The more I learn, the less I know. Yeah. Brilliant. Let me think. Anything else you wish you could have said or shared today?

[B]

No, I really appreciate this opportunity because this is one of those few chances I've had to really pull everything together. And I think I'm hearing myself talk has been helpful as well. Just try to see those threads that weave through these journeys. And the other thing, if you'll indulge me for just a moment here, I think you are a perfect living example of everything we've talked about and those of you with OCD who have gone on to help others with OCD at a clinical level, I think that's the ultimate greater good decision making. I really do. Because I don't know if this is the case for you, but I know for me it would be very triggering to be in that position. And I imagine that you would probably have to push through at least at some part of your career journey. You've had to push through some past the bully a few times to get where you're going. And I salute that. I salute you. I salute everybody in our community who has made that transition from, you know, helped to helper.

[A]

No, thank you. I appreciate it. But yeah, the gift is mine. You know, it gives my life meaning and that's all I wanted. So. Yeah, no, but thank you so much. You know, it's great to spend time with you again. Like, like you said, it's been a long, long time, but it feels like yesterday.

[B]

Yeah.

[A]

Any time has passed and the connections there. So, yeah, I appreciate it. And thank you so much for coming on and just being open and honest as you always are. It matters.

[B]

Well, thank you. And what, what, what you have built through this podcast is truly phenomenal. I want to say I was still in the teens as episode number way back when, when we first did this years ago. And were you up to 500 and something?

[A]

Is that what you were saying about 520? Well, 520 something when we're recording this.

[B]

Wow, that's phenomenal.

[A]

Yeah, no, thank you. Putting one foot in front of the other. Yep, yep, yep. Cool. Thank you so much, Jeff. Our thank you, Stuart. Thank you for listening to this week's podcast and thank you to our Patreons who help make this episode possible. And if you would like to find out more about Patreon and the rewards and benefits, then there will be a link in the episode description. If you enjoy the OCD Stories podcast and would like to support us, please subscribe and rate the show wherever you listen to the podcast. And thank you to NOCD for supporting our work. If you want to find out more about nocd, you can click the link in the episode description. And quick disclaimer. Guys, this podcast is not therapy. It is not a replacement for therapy. Please seek treatment from a trained professional until we speak. Take care, Sam.