Karen Duffy on Making Peace with Neurosarcoidosis

Episode Transcript

Dr. Correa:
Here we are for the next episode of the Brain and Life podcast from the American Academy of Neurology. Audrey, welcome back!

Dr. Nath:
Great to see you, Daniel. Tell me what's going on this week.

Dr. Correa:
Oh, all right. So you're an 80s and 90s TV generation kid, right?

Dr. Nath:
I am still to this day obsessed with 90s TV. Come on, Supermarket Sweep? Press Your Luck?

Dr. Correa:
Oh, well I bet you also watched a healthy amount of MTV.

Dr. Nath:
Way too much. Total Request Live. All of it. All the videos. All the shows. Oh man, I could talk about this all day.

Dr. Correa:
Well, I was fanning it up a little bit. Here we have an episode for people who lived in that or might know from the late 80s and 90s TV generation. So, we feature Karen Duffy. She was a VJ from MTV.

Dr. Nath:
Oh, right! Nice! Yeah, what's she up to?

Dr. Correa:
Well, beyond the time that she was on, very shortly after one of the major award shows, she got struck with her first bout of neurosarcoid, actually injuring her spinal cord.

Dr. Nath:
Oh, wow!

Dr. Correa:
And that set her on a long course of managing the condition, working with it, and then becoming a health advocate for those and other people living with neurosarcoid and chronic pain.

Dr. Nath:
Oh my goodness. I can only imagine. I mean, neurosarcoidosis is a condition that you don't hear about a whole lot, that we don't hear a lot of people talking about, so I'm glad that she's going to be telling us about her story. Because I can imagine when she was first struck, she probably did not know what was going on. I'm guessing that must have been really scary.

Dr. Correa:
So totally interesting episode. I think it's really important for us to hear and learn about this unique and somewhat rare condition. But it overlaps with so many other conditions that affect the brain and the spinal cord, and then so many conditions that have symptoms of chronic pain.

Dr. Nath:
It's so important to talk about these chronic conditions. Really looking forward to it.

Dr. Correa:
And now for our episode. Welcome back to the Brain and Life podcast. So for the 90s TV generation, many may remember Karen Duffy from MTV and known her as Duff, or maybe even Duffy. Some of our listeners might recognize her from 80s and 90s television commercials, her work on MTV, or her role in the Dumb and Dumber movie. After so long, some might wonder, "Where is she now?" Well, from behind the screen, she played the voice of Linda Otter in Fantastic Mr. Fox and has gone on to write several books. So in addition to her past work as a model, a TV host, an actress, she's also an accomplished author, health advocate, and now also a hospital chaplain since 2011. Duffy, thank you so much for taking the time to join us on the Brain and Life podcast to share your life and perspective throughout your journey with neurosarcoidosis and chronic pain.

Karen Duffy:
Well, thank you so much, Dr. Correa. I've got to say I so enjoy listening to you when I'm on my walks, and you just keep me such good company. And I really appreciate every opportunity to become less dim. So thank you very much for your service to podcasting and science.

Dr. Correa:
Thank you for keeping us company by listening. That's great. It's great to hear.

Karen Duffy:
It's a great symbiotic relationship.

Dr. Correa:
So I wanted to go back to maybe help us all relive a little bit of those great 80 and 90s years. Take us back briefly to those 90s whirlwind years for you.

Karen Duffy:
It was interesting, Dr. Correa, because my degree is in recreational therapy, and I was a certified recreational therapist, and I loved my job. I worked in the clinical setting in a nursing home, the same nursing home that I started volunteering at when I was 12 years old in the West Village in Manhattan. After I graduated, I moved back to the city and got my job working at the same nursing home, which I loved. And I loved the idea of recreational therapy, where you're really focusing on ability rather than what you cannot do. And I loved the challenge of working.

Karen Duffy:
I was in a memory care unit, worked with Alzheimer's and dementia patients, and one of the things that I realized was that the skillset that I had developed as a recreational therapist on a memory care unit, where knowing how to move my body, how to speak and elocute clearly. All these skill sets, all these things that I have learned as a recreational therapist would absolutely translate to the MTV audience. So I had no experience and made a videotape, unsolicited, and sent it into MTV. And I think I sent it in on a Friday. I had a screen test on a Tuesday, and by that following week, I was the primetime VJ, which I loved, and it was a wild ride.

Dr. Correa:
You jumped in unsolicited and within a week, almost, you were on TV. That's amazing. What changed for you that caused you to start having to see the doctor and explore something else was going on?

Karen Duffy:
Felt like it was overnight, but it was probably about a week. I was one of those lavishly, healthy, young people that treated my life the way you drive a rental car. I mean, I was living a healthy lifestyle, but I was not cognizant of how lucky I was. I just started having a headache, on the side of kind of behind my ear, to the point where it was really grabbing my attention. It was interfering in the way I could speak. I realized I went through a bottle of aspirin in a week, and I thought, "Oh, that's not good." So I was working in LA, and funny enough I was at the Emmys, and I truly felt like I was struck by lightning. As soon as I could, I jumped on a plane, got to New York. My doctor stayed late. He saw me and then immediately scheduled MRIs and CT scans, and then was able to see the lesion, which was sarcoidosis. So it really happened very quickly.

Dr. Correa:
And very quickly after they found the lesion, you had information and an understanding of what was going on? Or did it take a while and a whole process to figure it out?

Karen Duffy:
No, Daniel, it took about two years, possibly, maybe three to get a complete diagnosis. During the years of becoming symptomatic and getting a diagnosis, I was hospitalized many, many times for months at a time, and it didn't give me anxiety. I was okay with not knowing. I kept thinking, "Well, the longer, maybe, it's taking, then maybe this is something that we don't know a whole lot about. Maybe there will be an upside of it." But it didn't, in any way, give me the Jimmy legs, the fact that I didn't have a name for what it was.

Dr. Correa:
An interesting perspective, and what were some of your experiences along the way? What type of symptoms did you develop as a part of the neurosarcoidosis, or the demyelination?

Karen Duffy:
Well, the catastrophic pain, which ignited one night in September, and it has never stopped. I live with chronic pain, neuropathy in my hands and feet, and then truly it's pretty much from my shoulder to about my ear. So, I can't have any clothing, any hair, anything touching this particular area. So, I use a topical cream. I wear a lidocaine patch, and then I take my pain medicine. The neuropathy I've had, again, for 30 years, and I kind of seem to have ... It's interesting when you're first diagnosed. And a lot of this, these metaphors, "We're going to fight this. We're going to battle it." And I was saying, "I'm a lover, not a fighter." I don't need all these war-like metaphors in my body. I want to make peace. I want to live in a truce. I don't want to always be fighting with my body. I accept that things are imperfect, and just because chronic pain and chronic illness has derailed me, I still squeeze as much as I can out of every moment, so I'm very grateful.

Dr. Correa:
I want to come back to some of your thoughts and the perspective you've learned from your philosophic practices in a little bit. We're also starting now to take questions from our listeners. So for our listeners, you can call in anytime and record a question at 612-928-6206. You can also email or record an audio message and send it to blpodcast@brainandlife.org. So, one of our summer interns, Emma Wang, she was wondering what are some of the misconceptions about chronic pain that you want to set straight?

Karen Duffy:
Well, thank you very much for the question. It's very compassionate. It's interesting because I present fairly high-functioning, and that's because when people see me, I'm usually in a photo shoot, and that's a different version. I find this to be compassionate, but my brothers and sisters in chronic pain have a real issue when people say, "But you look great!" I think, "Well, thank you." I have many of my friends as a patient advocate, and they're like, "But that seems like they're de minimus of my condition." And I was like, "Well, sometimes people are clumsy. They don't know what to say."

Karen Duffy:
It was really helpful to me. I saw a psychologist who studies the psychology of women who are going through traumatic medical issues. She said one thing is that when people hear that you are so sick, they almost won't believe it. Or because the idea that somebody that you love is dealing with something that is pretty terrible, then if it's possible that I can get sick, then it's kind of clear that this could happen to anyone. That can kind of destabilize people, so I try to encourage folks to be compassionate to our knucklehead friends and family who mean well but may be tripping over their tongue when they're talking about our illnesses.

Dr. Correa:
Well, that's a good point to raise. You bring up that, sometimes, chronic pain is not typically a visible thing, and for many people it's, generally, an invisible manifestation to many conditions. For you, neurosarcoidosis. Miriam, one of our other interns was wondering, is there a sense of isolation that you have had with that?

Karen Duffy:
That's a beautiful question. I believe that my work as a patient advocate has kept me in a community where I'm connecting with people pretty much every morning when I wake up. Before I get up, I take my medicine, and then that will take an hour to kind of get through my system before I can put on clothes. So during this time, that's when I catch up and connect with the patients that are talking in my support groups, or I take online courses. So, it can be isolating because, again, it's not visible.

Karen Duffy:
The word chronic comes from the Greek, meaning “time.” Chronos, time. So chronic pain means pain that is beyond time. I have just found different ways to show up in life. I think my personality, I am kind of a "glass half full, fly by the seat of my pants" kind of gal. But while I live with chronic pain, chronic illness, I am not suffering. I mean, I'm not celebrating through it. I feel like I'm negotiating with it. I mean, I feel like I'm not compromising. Because people always say, "Oh, she's suffering with this." Well, I'm not exactly suffering. I would say I'm negotiating with my illness.

Dr. Correa:
It's almost like the way someone who boats and navigates the ocean sort of talks about their journey and pathway, that there's no controlling the ocean, so you just find a beautiful path to take.

Karen Duffy:
Probably the most profound words in Stoic philosophy, which are, "We can't control what happens. We can only control how we respond.” And how we respond is, really, to me. There's a spiritual equation that life is 10% what happens to you and 90% how we respond. I understand that I'm living in a body that has its challenges. But every day, we have a choice to be useful or useless, and I try and be as useful as I can every day, even if that's just a short thank you letter. Just some little way.

Dr. Correa:
Each day drawing in some purpose.

Karen Duffy:
Exactly, exactly. It's so important. I think with purpose, we often think how it's the meaning of life, but truly having a purpose is having something to love, something to do, and something to look forward to. And I just feel like that's such a nice definition of purpose.

Dr. Correa:
So, you've written three books.

Karen Duffy:
Four!

Dr. Correa:
Four, but the three more related specifically to your journey and your condition- Model Patient: My Life As an Incurable Wise-Ass, Backbone: Living with Chronic Pain Without Becoming One. I like that. And more recently, your book Wise Up. In each, you approach your own story and life with neurosarcoid and chronic pain with wit and humor. So, one of the ideas that we liked taking a look over your books, can you speak about the idea of small carrots?

Karen Duffy:
Yes. Small carrots are little, arbitrary goals. Martin Luther King said, "You don't have to take the whole staircase. Just take the first step in faith." And so writing a book, which is what I love to do, these take years, and I'm committed to it. It's funny because I'm not as active, and I spend a lot of time watching my son play hockey or sports, so I bring needlepoint. I was telling my neurologist, Dr. Petito, how I really am enjoying this needlepoint, and he said, "You're probably soothing your amygdala because you're just doing the repetitive motions." And then once he told me that I was looking for other enjoyable, repetitive things, and I think that's why I enjoy walking so much, or kayaking. Things, again, that are just the same motion over and over again. So, my small carrots are my small, little goals that will help me get out of bed and face the day and feel useful.

Dr. Correa:
You talk about the concept of acceptance to your conditions and your symptoms, so what was most helpful for you to achieve acceptance of your chronic pain and your chronic illness?

Karen Duffy:
Well, realizing that life is imperfect. It's imperfect for everyone. And again, trying to feel like I am of service. I think that is when we feel most alive, is when we are participating in life in a meaningful way. It was interesting, one night, I was at a cocktail party, and it was a million mosquitoes. I was wearing my pain patch, and I was sitting next to the cellist, Yo-Yo Ma, and he saw this big white patch that I was wearing. He said, "What is that?" And I said, "Well, this is a transdermal pain patch, so this is impregnated with pain medicine. It just gives me a break just so I can make it through this evening." And then, very sweetly, he said, "What's it like to live in chronic pain?" And no one really asked me that. He'd never met me before.

Karen Duffy:
And then because the mosquitoes were buzzing, I said, "Well, you know when you get a mosquito bite, and then it itches, so you scratch it? So when you scratch your mosquito bite, you're trading the itch for some low-level pain. And I think the way that I live my life is I have high-level pain, but I'm trying to fill my life with low-level happinesses.” PG Tips tea just the way I like it. I've got a book that I can't wait to get back to tonight. I fill my life with things, acts of service, and small acts of service to myself. I still value who I am. I feel like I have enough to give and enough to share, and that really helps me with acceptance.

Dr. Correa:
That's nice. And after your diagnosis, then you also completed a certification and have been working as a hospital chaplain, so you've jumped in the help alongside many of us. What spurred your start on that journey?

Karen Duffy:
I think I was very comfortable in a clinical setting, working as a recreational therapist. I had done my internships in rehabilitation hospitals at Cal Berkeley and in Boulder, Colorado, and I really felt that, in a way, it's a calling. After 9/11, I was a grief counselor for the Family Assistant Center, and I really, again, felt like that was a calling. When my son went to kindergarten, I said I was going to go back to school, so I went back to school to study. I am a hospice chaplain in the Buddhist tradition. I do feel like I have a busy life as a patient advocate, and I can no longer work in the hospital settings because of COVID and many other things. But again, any small way we can be useful, I think, the world's better, and we're better.

Dr. Correa:
Excellent points. Well, thank you so much. I mean, it's been great having a chance to talk and to meet. I hope to hear from you and upcoming work.

Karen Duffy:
Thank you so much. It was really such an honor to meet you, and thank you so much.

Dr. Correa:
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Speaker 4:
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Dr. Correa:
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Speaker 4:
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Dr. Correa:
Welcome back to the Brain and Life podcast. We are glad, today, to be joined by father of three and neurologist Dr. Jeffrey Gelfand. He specializes in autoimmune and inflammatory neurologic conditions. He also treats many neurologic problems that can happen in rheumatic diseases or other illnesses that impact their body. Dr Gelfand, thank you so much for taking the time today to join us on the Brain and Life podcast, and to share your expertise on neurosarcoidosis and individuals living with autoimmune diseases.

Dr. Gelfand:
Thank you so much for the invitation. It's an honor to be here.

Dr. Correa:
So Jeffrey, now you were in high school in the 90s. Did you watch much MTV?

Dr. Gelfand:
I did watch some, and I grew up in that generation for sure.

Dr. Correa:
So we just had an enlightening discussion with Karen Duffy, or Duff, as many people know her. She was a former MTV host from the 90s. Listeners might recall her from her role as J.P. Shay in Dumb and Dumber, and she shared with us her journey with neurosarcoidosis and how it pulled her from the red carpet. But despite its impact on her life, how she's kept her art and creativity through it all. So almost overnight, Duff developed debilitating pain and sensory loss from inflammation in her spinal cord. Eventually, this was diagnosed as neurosarcoidosis. Can you help us all understand what exactly is neurosarcoidosis?

Dr. Gelfand:
Neurosarcoidosis is an inflammatory condition where the body's immune system gets misdirected towards attacking the nervous system. Sarcoidosis, more broadly, is an inflammatory syndrome, in which the immune system can target many other organs, such as the lungs, or the lymph nodes, or the eyes, or the skin, or many others. And so neurosarcoidosis means the impact of sarcoidosis and the effective sarcoidosis in the nervous system.

Dr. Correa:
Being that it's related to the condition, sarcoidosis, that's one way that it's different. Now in our previous episodes, we had an episode talking about NMDA encephalitis and another episode on Rasmussen's diseases, which are both autoimmune conditions. But this is different because it's related to sarcoidosis? Or are there other ways neurosarcoidosis is different from those conditions we've covered before?

Dr. Gelfand:
There are many ways that neurosarcoidosis is unique or special, in terms of trying to understand how it affects people. Sarcoidosis, classically, is a multiorgan system inflammatory syndrome, meaning it can affect many different organs. And in many people with neurosarcoidosis, there may be signs of inflammation of autoimmunity from sarcoidosis in other parts of the body, such as the lungs or the skin or the eyes, or other organs such as the liver. There are many, many possible manifestations and combinations. Some people with neurosarcoidosis, however, only have identifiable or detectable nervous system involvement. In other words, the inflammation is isolated to the nervous system, and we call that neurosarcoidosis.

Dr. Correa:
Now, when we consult Dr. Google, neurosarcoidosis is described in some places as rare, but what do we really know about how often it can show up in people with autoimmune disorders?

Dr. Gelfand:
It is often said that neurosarcoidosis is rare, but rare is a relative term. And for someone with sarcoidosis, it's not rare to them. I think in the real world of clinical neurology, neurosarcoidosis is a really important diagnostic consideration. In terms of hard numbers, one of the challenges with neurosarcoidosis is that, historically, there's been a lack of attention, or a lack of research focused on both neurosarcoidosis, as well as sarcoidosis more generally, especially compared to other autoimmune and inflammatory syndromes. Some rough estimates, based on epidemiologic studies around the world, would put numbers at about one in every 100,000 people have a diagnosis of neurosarcoidosis. That's really on the same level as many other autoimmune conditions that we routinely consider, such as certain autoimmune encephalitis-type conditions, or other kinds of conditions such as neuromyelitis optica spectrum disorder. These numbers may be relative and can also vary based on the specific epidemiology, but I think the bottom line is it is rare, but probably not that rare, and it's really important for everyone to be familiar with neurosarcoidosis and have really thoughtful approaches to helping patients with the condition.

Dr. Correa:
Now, you mentioned some of the chronic pain that some patients can have, and Duff mentioned that's really something that's been a big part of her living with this condition, aside from all the sensory issues and sort of abnormal touch that causes a lot more pain. How do you approach the chronic pain that many individuals have with neurosarcoidosis and other autoimmune conditions?

Dr. Gelfand:
Chronic pain, it can be really problematic and disabling and cause so much suffering to our patients. And one of the challenges, too, is that it may not be evident or visible to people on the outside. For example, if someone has trouble with walking, people around them may say, "I can see that there may be something going on neurologically," but if someone is suffering with neuropathic pain from the nervous system-based origins, it usually doesn't show on the outside. It's really just an internal human experience. So, I think one key thing is to really emphasize and validate the importance of addressing and focusing on that pain, and there's several strategies in neurology and pain medicine, and medicine generally, focused on trying to target nerve pain specifically.

Dr. Gelfand:
One approach is to use clinical expertise and judgment to try to determine where the pain is coming from, and there's particular kinds of pain that are very typical of coming from injury to the nervous system, such as from spinal cord injury, and that's called neuropathic pain. And there are many ways of addressing that, such as with medications that target neuropathic pain, as well as with other multimodal approaches, in terms of helping patients address and live better lives given that this pain can be such a big deal.

Dr. Correa:
Now, what have you learned from the community of patients you've been caring for that has helped people manage these conditions?

Dr. Gelfand:
I think there's several lessons. One is that neurosarcoidosis, at least historically, can sometimes be very challenging to diagnose. This can lead to diagnostic journeys or diagnostic odysseys that can sometimes really take a long time, and that can be particularly challenging and frustrating to patients. Speaking as a physician, I can say it's also frustrating from our standpoint as well. We need better diagnostics. We need better science and better testing to be able to make a diagnosis of sarcoidosis earlier and more definitively. In many patients, a diagnosis of sarcoidosis will require a biopsy of some part of the body to look under the microscope and see is there that characteristic inflammation of sarcoidosis, and that can be invasive. And depending on where in the body is accessible, sometimes it can be really challenging. I think having worked with many, many patients who have gone through that journey, that can be a particular challenge.

Dr. Gelfand:
I think just really being sensitive to that and having empathy for that is important, and this is also what's driving a lot of the research questions and research needs. Other lessons that I've learned are some patients have a really hard time explaining sarcoidosis or feeling frustrated that other people don't know about sarcoidosis. They wish that sarcoidosis was more familiar, and that can be lonely. That can be frustrating. There's really a huge wish for more awareness, more knowledge about sarcoidosis generally, and neurosarcoidosis in particular. There's really, historically, been less research and less focus on sarcoidosis and neurosarcoidosis than many other inflammatory conditions, and my personal hope is that with more awareness and scientific breakthroughs and better treatment options, that this will be less and less of a problem going forward.

Dr. Correa:
Well, Dr. Gelfand, thank you so much. Thank you for taking the time and thank you for really sharing with us that perspective of really having a comprehensive and empathetic approach to working along with the people living with these, so that they can live better and address all the possible medical issues that may occur with their condition.

Dr. Gelfand:
And I'm optimistic about the future of neurosarcoidosis care and, really, of sarcoidosis awareness and sarcoidosis research going forward. I think this is an exciting new area in making lives better for people with neurosarcoidosis.

Dr. Correa:
Thank you, Jeffrey.

Dr. Gelfand:
Thanks so much.

Dr. Correa:
Thank you for joining us today on the Brain and Life podcast. Follow and subscribe to this podcast so you don't miss our weekly episode.

Dr. Nath:
We are your hosts.

Dr. Correa:
Daniel Correa, joining you from New York City and online @NeuroDrCorrea.

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

Karen Duffy on Making Peace with Neurosarcoidosis

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