Dr. Marsha Johnson - Trailblazing Audiologist Sparks Misophonia Movement

S1 E8 - 1/1/2020
In this podcast episode, Adeel Ahmad interviews Dr. Marsha Johnson, an audiologist from Portland, Oregon who played a pioneering role in recognizing and raising awareness about misophonia since the late 90s. Dr. Johnson discusses her early encounter with misophonia when it was often mistaken for hyperacusis, her development of a unique questionnaire and assessment method for patients, and her tireless efforts to advocate for research and understanding despite skepticism from the medical community. She also delves into the evolution of misophonia recognition, citing significant milestones like the 2011 New York Times article that propelled the disorder into broader awareness and recent advancements in research funded by organizations such as the Reem Foundation. Additionally, Dr. Johnson shares insights about the Misophonia Association's valuable role in education and connecting those affected, culminating in the annual misophonia convention that continues to foster community, knowledge exchange, and support.


Adeel [0:01]: Hello, welcome to the Misophonia podcast. This is episode eight. My name is Adeel Ahmad and I have Misophonia. I'm super excited to be bringing you this week's guest. Dr. Johnson is an audiologist practicing out of Portland, Oregon, who became one of the first people to recognize Misophonia back in the late 90s and has since been an unrelenting force for raising awareness and advocacy. She's also the head of the Misophonia Association, which I often mention because they put on the annual Misophonia Convention in October, which inspired this podcast. She's also one of the first people the media goes to for comments about me. So just this past year, she was interviewed by NPR, Oprah's magazine, and she gets asked to talk on multiple TV shows. You're going to hear Dr. Johnson talk about the start of her practice, how she came to identify misophonia in her early cases, her persistence in telling the world that this is a real thing, and her hopes for future research. I can't think of a better person to interview for the first episode of 2020. A new year and a new decade that I hope will bring far more research, awareness, understanding, and respect for this disorder that we suffer in silence. It's probably going to be a bumpy ride, but let's hold on to each other and keep sharing our stories. And I'm certain the world will change towards a new era for me. So now get comfy and enjoy this chat with the legendary Dr. Marsha Johnson. Are you ready to start in, I guess? I'll give you a little, I'll just say, Marsha, Dr. Marsha Johnson, very warm welcome to you. I'm very excited to have you on the podcast. Me too. So, great. So, why don't you introduce yourself, actually, instead of having me do it. Yeah, tell me about kind of where you're located and what you do.

Marsha [2:02]: Yeah. Well, my name, like you said, is Marcia Johnson. I'm living in Portland, Oregon. I became an audiologist in 1997 as kind of a secondary career for me. And I opened a clinic specifically for tinnitus and hyperacusis. And the name of it is the Oregon Tinnitus and Hyperacusis Treatment Clinic. And I opened in July of 1997 in a very tiny office that I could afford. And the first few patients were really... from faraway places, some of them. And that summer, I had some teenage patients that came to my clinic from different locations, including British Columbia, and they had some unusual symptoms. And those turned out to be my first patients with mesophonia.

Adeel [3:00]: Wow. So kind of right off the get-go, you started to see this?

Marsha [3:05]: Yes, because at that time, this was over 20 years ago, of course. So these patients were diagnosed possibly with hyperacusis. So the closest thing available at that time was the diagnosis for hyperacusis. And that's a condition where people find moderate to louder sounds offensive or intolerable. They have a decrease. In what we call their sound tolerance dynamic range so softer sounds and moderate sounds are acceptable, but these individuals use a lot of your plugs and they find microwave beeps or or car horns or. dishes clanking, higher-pitched, sharp, sudden sounds, they find them unendurable. And so all of these young people in their teens and 20s came down to my clinic in Oregon with those concerns that they had hyperacusis. And that's how they found me.

Adeel [4:07]: Gotcha. Okay. So they suspected they had hyperacusis. And then what made you, what were kind of the differences that you noticed that made you think that there's something else going on here?

Marsha [4:20]: That's a really good question because that has been something that took me a number of years to kind of figure out. I had trained with a fellow named Pavel Jastubov back in 1997 in his second class, he offered a training course for what we call tinnitus retraining therapy. And he accepted about 10 or 15 people. in each of his classes, and I had to go back to Maryland, and so I learned a testing protocol when I was there with him from his audiologist, whose name was Susan Gold. She taught us how to do a testing process, and so when I was doing this same testing process, you know, on people with tinnitus, which is a phantom auditory perception in your head, and then the testing for hyperacusis was something called the loudness discomfort level test, and This is a common test known as the LDL test, but this is something they had brought into vogue really in the late 80s and early 90s. and hadn't been used very widely, and even to this day, a deal, you cannot bill an insurance company for the LDL test. There isn't a code for it. So still, very few audiologists actually do that code. So I did all of these tests on these young people. And when I did these tests on these young people, they had absolutely no results whatsoever. They didn't have tinnitus. They had perfect hearing. They didn't have reduced dynamic sound tolerance. They could do the LDL test to 90 or 100 decibels. So it was like giving them an evaluation, an assessment with maybe 10 different tests. On every test, they were perfectly normal, if not better than normal.

Adeel [6:08]: Gotcha. And so were they coming to you with, you know, these days, obviously we have, you know, there's the obvious triggers that we all talk about. Were they coming to you with the same kinds of triggers, like, you know, the mouth sounds and whatnot that we talked about today?

Marsha [6:24]: They were, but I really want to take you back here 27 years.

Adeel [6:27]: Yeah, please.

Marsha [6:27]: This little audiologist in Portland, Oregon, who's looking at these beautiful young women, and they don't have hyperacusis. They don't have tinnitus. Everything's perfect. And so finally, and you have no questionnaire for these things.

Adeel [6:43]: Right.

Marsha [6:44]: There's no questionnaire. So finally, to the very first one, I said, well, what is it that is the problem? And her dad, she was 16. Her dad said, watch. And he did something that was a trigger for this young woman. And she ran out of my clinic and sat on the curb and cried in front of my office.

Adeel [7:04]: Wow.

Marsha [7:05]: So I followed her out there. And then she told me about her life. And she told me that she was in high school. She had had to stop going. She spent all day in her room when she was home. She was able to go to two classes at the school. And she had been a very good student. And I asked her what those were. And she said she could go to band. And she liked to go at lunch in the cafeteria and eat lunch with her friends. And after what she had told me, I was curious because, you know, a lot of our triggers are mouth-oriented or breathing-oriented, you know. I'm not going to mention too many here. I got the hang of that, okay. Anyway, so she said, I said, how is it you can go to the cafeteria? And she said, because it's very noisy. We have about a thousand kids. And they talk and visit, and it's really loud. And so I can go and sit with my friends. And so that was the first glimpse I had into somebody that had misophonia. At that time, I had a different name for it I came up with. But I started talking about these cases, and I didn't know what to make of them. I reached out in many different venues. Pretty quickly, over about five years, there were around 800 cases I had located in ended up spending some time with either you know some communication and people started to hear that i was collecting these cases and then um so i began to understand more and more about this very strange condition which didn't have a name at the time so and it was that selective sound sensitivity syndrome i know that was a term for a while gotcha yeah yeah i remember i came up with that term as part of the hyperacusis network because that was a very big uh online support group for people and again they thought these people had hyperacusis that's what they were they were cataloged under and so i kept insisting it was something different and finally on that group of different people had suggestions i had suggestions and we came up with what now you hear once in a while is 4s which is selective sound sensitivity syndrome and then along about that time that was about 1999 around that time period to 2000 and by then I had already figured out also that there were visual triggers oh okay gotcha yeah because that's something that um I've only heard about recently but uh interesting so you you started to put that together roughly 20 years ago as well yeah because I had to create questionnaires I had to create a rating form I had to create a protocol for for assessing individuals like this because the standard audiology tests, for example, you know, they were not useful for this population. And the fact is a lot of these cases, even to this very day, if you have a child or a young adult that is having trouble with misophonia, initially it's going to be referred to the ear, nose, and throat physician because they think there's something possibly wrong with the hearing. Super acute hearing or hyper acute hearing is the most common issue because the pediatrician will listen to the family and the adults and they're saying well when these noises come along this is the behavior. And they know something about hyperacusis usually because that's a condition you can get with head injury, falls, high fevers, immunizations, migraines. There's some association there with hyperacute hearing. And so they trot off to the ENT. And then along the way, the ENT generally has an audiologist that works with them. And so that's one thing people should understand. Why does all this lead to the audiologist?

Adeel [11:02]: Yeah.

Marsha [11:03]: Because, you know, it's a little bit, how is that? Well, it's because the first complaints in childhood are usually something to do with hearing.

Adeel [11:11]: Are psychiatrists brought in at some point, too? Or at least back in that day when people didn't realize that it was neurological and physiological? Yes.

Marsha [11:18]: Initially, and even to this day, unfortunately. You know, we feel like we've made a lot of progress ever since the 2011 New York Times article came out with Joyce Cohen. It featured my clinic and my work and it talked about this whole topic. And that's when my group on Yahoo grew to over 5,000 people in a couple of months. By the way, that group is about to close down because Yahoo is closing those groups. But I will say what happened at that point was very... It was very strange because most of these individuals, they are young, usually between 8 to 13 years old. And what happens when they have the onset, it's rather sudden. Misophonia, 90% or more of the time, comes on like a lightning strike. It doesn't have a slow buildup. This is something serious happens rather suddenly. And so the parents are thinking this is a behavioral issue. This is my child being sensitive, grumpy. She's getting sick. He's just, you know, having a bad day. There was a fight, a lot of, you know, behavioral issues. And the parents keep trying and trying. They can't figure out this huge change in behavior.

Adeel [12:38]: And it usually happens around adolescence that I've noticed. So, you know, it's easy to kind of like throw that under the umbrella of hormonal changes or puberty or whatnot.

Marsha [12:48]: Exactly. Yeah. And this is very confusing for everybody because in the family, a little family constellation, the child has no idea what's happening either. All they know is unbearable all of a sudden to sit next to a family member at the table. yeah they they don't know why this is happening and they can't even explain it and furthermore the parents can't explain it they don't know what's happening and everybody gets lost and the parents you know get frustrated and yeah you can get sent to the psychologist or the psychiatrist or a counselor but to be honest with you i mean a lot of that can take years many times it's just like well she's just different she just can't sit here anymore we don't know why and they try to ask this young person what's what's the matter and even when they explain i can't stand this particular activity no they can't they don't have any like it's like they don't have a nest in their head for this bird to roost in okay it sounds so strange to people they A lot of them didn't have this in their family or it's very different expressions. You can have mild, you can have moderate, you can have profound. But I'll tell you, the communication, especially if one of the problems is somebody's voice or communication, that also impacts this enormously.

Adeel [14:20]: Yeah, it's hard to tell somebody about it who's triggering you while you're having that conversation.

Marsha [14:25]: Yeah, and I've had several patients early on in those early days before. Right after the year 2000, two parents came from the East Coast with children that were 9 or 10 years old. And both of those adult parents were pediatric neuropsychiatrists. That's what they were. Pediatric neuropsychiatrists. So individually, they didn't know each other. But each one came with a young child out to my clinic. to try to be evaluated see what was going on in each of those physician parents had given their children at least five psychotropic medications oh wow because they believed it to be ocd they believed it to be anxiety disorder i mean these in parents were were writing prescriptions for their own children trying to fix this problem wow and did they have any effect at all um Not on the misophonia. I mean, certainly it affected their children, and they were certainly alarmed because you don't easily give a 9- or 10-year-old child a heavy-duty drug. You have developing brains. They were very concerned about what to do, and that in itself was interesting that none of these medications, and I knew way back then that a medication doesn't necessarily affect misophonia very well

Adeel [15:51]: Mm-hmm. So you were collecting, so you were collecting, you were reaching out to audiologists and doctors around the country, collecting all this data. Were they, what was their, what were their reaction? Were you just, they were just like, oh yeah, we noticed something. Here's some anonymized information. Or were they like, hmm? Let me take a look. Like, were you getting people to kind of like hear the word about misophonia and start to recognize it in their own clinics? Like, what was, how was that reaction?

Marsha [16:20]: You're making me laugh because you're putting such a nice value on it. Can I be totally honest with you?

Adeel [16:27]: Please, please. Yeah.

Marsha [16:28]: I mean, I took every opportunity I was collecting. more and more of these people as word spread through hyperacusis network and i was going to conventions i do presentations at national audiology conventions i was reaching out to my mentors and other people and i was being told left and right these were psychiatric cases i had no business assessing these individuals that they had significant psychological problems and that these were neurologists psychologists physicians that i i was a master's level audiologist at the time you know i didn't get my doctorate till later then so you were doing ego issues and stepping on toes yeah this was all nonsense and this was all made up stuff and that you know they should just be referred to counseling and exposure therapy and wow and i was saying well you don't understand i've seen a couple thousand of them and they have been given exposure therapy repeatedly and it doesn't seem to work at all and i'm only telling you what they're telling me so i kept on i sat on a bus one time in minnesota with a neurologist at a specialized convention and he told me that i was crazy for following up on these cases i had no business to do this and i should just basically bug off and i was being a good west coast person you know i'm just kind of like well that's your opinion but i actually believe my patients i i believe they're telling the truth and they're telling what is happening to them and we need to listen

Adeel [18:07]: Wow. And we all appreciate your persistence. For those out there, she persisted. And we all appreciate that. And I think time is proving you right. And what were they doing? All these cocky people telling you to bugger off. Other than prescribing drugs, were they actually doing anything or researching anything at the time in the early 2000s?

Marsha [18:34]: I wonder, I did see one case I remember when I was in graduate school that I was pretty sure had misophonia later, but at the time even the professors that were there at the time basically laughed at this person when she laughed. I think they dismissed them. I think personally, I think it was like people that have anything like fibromyalgia or something who were saying you know, I'm having these feelings, these sensations, these perceptions, and they get dismissed for decades. It's just, you know, something wrong with them, with their willpower or their anxiety levels. And then later on, you know, do you remember way back when, Adeel, when they used to think of schizophrenia, where you had a, you know, lack of sort of a disassociated state of being, and they believed it was your mother didn't love you enough. Do you remember that? They used to chain people up in court in churchyards to cure them and and then along the way they discovered it was a brain chemistry imbalance and when they they give medication that restores some of the brain chemistry of these individuals they become connected to reality and they don't have those symptoms And it turns out that schizophrenia is actually a physiologic disorder. And it turned out that, you know, it was a brain chemistry glitch somewhere in the system. And this is the way I feel personally about misophonia, that I feel like that medical providers have been dismissive. And I think in the last few years. I do believe that in the last few years as we keep calling attention to it and everybody goes from the, it's interesting, from the media back into the medical world and a lot of our members in the Misophonia Association, you know, they're going into their positions and handing them articles and saying, here, read this, here, look at this research, here, let me show you. And I think the people themselves that have misophonia are moving it forward.

Adeel [20:36]: Yeah, there's been a big push. Every convention we get energized to go out and do things. And that's honestly one of the reasons this podcast came around was just from trying to bring the discussions and conversations that we have amongst ourselves at the convention to the rest of the world. So I think this will be... a big year i'm hoping um on on the evolution but and but yeah so you mentioned like the research in the past few years do you want to like um give folks like a you know executive summary i guess some of that some of your kind of favorite um findings of the past few years

Marsha [21:11]: oh that's that's a wonderful topic i'm not sure i'll be the best but what i can tell you is when i started over 20 some years ago there were no articles not one and and until 2011 when that joyce colin article came out in new york times that was the turning point for everyone because that was the first time it had been in a big prominent um you know newspaper and then we were able to form the association in 2013 and i had a meeting in portland and 55 people came i had to rent a church for 500 i was very nervous have to lose that money but lo and behold 55 people came and the way it's worked is that the awareness about misophonia as it has grown you had i had to end up going to new york and went on to good morning america and the today show yes and the doctors and all these really unusual things which i actually did not enjoy i have to tell you that was That was a difficult situation for me to be in those situations because it's just not my venue. And the fact is, though, that all of those shows and Kelly Ripa and people and even Dr. Phil recently with his... Horrible treatment of that poor woman that has misophonia. Still, it sparked interest in the scientific world. It sparked interest. And so we began to have some small studies coming out slowly. around 2013, 14, 15, just single cases, small studies. And then a big one finally came out with Arjan Schroeder over in Amsterdam. And that's a group of psychologists, psychiatrists that came out with a small study about misophonia, which was an important moment because it was one of the first big ones. And then, of course, Sukhbinder Kumar, has continued his work in london because his work was probably the most exciting for most of us because it was an objective study right dr schrader is a good um you know uh professional provider um and and researcher but his work was on how are you feeling you know what are you thinking about this or that but dr kumar's work was let me brush let me measure your brain waves

Adeel [23:44]: Right, and that was the neurological link.

Marsha [23:46]: That is the first one that was, hey, guess what? We've got a difference in measurement of functioning of your central nervous system. That was when we almost cried over at the convention. I believe that came out when we were in the Chicago meeting at Carroll Stream, that the audience just, I don't know if they knew, understood, but many of us were just... because we've been, you know, informed that this is some sort of a psychological phobia, like a fear of spiders, a fear of spiders. Well, a fear of spiders is not a biochemical glitch in your system. That is your, you know, that's unique to you, that maybe you love spiders, maybe you hate spiders, but, you know, it's not a disease, okay? It's not a disorder, a disease. And so when Sookbinder's work came out, It was thrilling because that showed us that something in these individuals' actual physiologic functioning of their brains, their biochemical processing in their brain was different than, say, your neurotypical person.

Adeel [24:54]: And I'm going to link to that study in the notes. And that's been reconfirmed with later studies, I believe, right? It's what we kind of heard in the last year.

Marsha [25:05]: There was a series, and that's just unbelievable. That's fabulous. And further, as you know, and I know, this wonderful group, the Reem Foundation. Right, yeah, tell us about that. The Reem Foundation is a family foundation, and they got together with Milken, And the Milliken Research Group, and Milliken is an abling group. I kind of call them a birthing group. It's a group of high, high-level scientific advisors. And they'll take a big donation from a foundation like Riemann. What they do is they manage it. They put out the request for proposals from scientists. They organize the process. They provide high-level reviewers. who can rank these grants. And they had, I know they received something like 37 grants and then they got it down to 16 fundable grants. And then, so they had offered, REEM had offered over $2 million. in 2019, $2 million for research.

Adeel [26:07]: Just for misophonia research.

Marsha [26:08]: Research. And they ended up choosing eight final grants to fund. And that was just, I mean, that was mind-blowing.

Adeel [26:17]: Right. And these haven't started yet. These studies haven't even started yet. Or they've just started. That's right. And so, yeah, this is going to be super exciting over the next couple of years to see what comes out of these.

Marsha [26:31]: They're going to announce those in December next month. And then they've let another two and a quarter million dollars. There's going to be at least eight more grants for 2020. So in that one family foundation with over $4 million. There's going to be a total of 16 high-level, truly scientific... See, up till now, the field of misophonia has been all speculation. About 99%. It's just smart people thinking about what it might be. And that's why there's a million different ideas out there right now. look into who what people think misophonia is anybody can throw uh you know a stone in the pond and say well i think it's xyz but these new uh grants are going to give a lot of concrete we hope scientific data that will take us forward another step

Adeel [27:28]: Yeah, that's why we're still vulnerable to all these, you know, the Dr. Phil's of the world and people who kind of mock it. But I think, yeah, I think I'm excited for the next decade.

Marsha [27:39]: Yeah, it's just a thrill. And it's so exciting to be part of this group. You know, we have so much fun at the conventions. And, you know, we just keep banging the drum and more people are joining in the parade.

Adeel [27:53]: So, yeah, let's talk about the Miss Funny Association a little bit and the conventions. I've been plugging, mentioning the convention during a few of the... the episodes already. And so, and I'll keep, you know, keep doing that as registration starts next year. But, but, you know, I'm not part of the association or the convention. I'm telling everyone definitely come to Philadelphia, you know, next year. But, but why don't you, yeah, tell us as, you know, you know, one of the people that started is, is, is, you know, the central, one of the central figures. Tell us about the association.

Marsha [28:27]: Well, I'll tell you some funny stories. So the first year was 2013. It was just me. I just was like, I had formed up in 2011 a group of about a dozen audiologists across the country that had tinnitus and hyperacusis clinics, specialties. And so I had gotten them together in a group and I said, you know, let's talk about misophonia or 4S at the time. And I shared with them all my rating forms and interviewing and assessment and all my data. And, you know, so I had shared with them. So we had this loose group of about a dozen people. And I was just like, well, we just have to have a meeting on this or something. And the funny part was, so we had 55 people signed up. And a couple of those audiologists came out. Jill Meltzer came out. Jolene Jaffe, a psychologist, came up from California. And with Cindy Simon, Jolene and Cindy and I have been the primary three volunteers, professionals, but complete volunteers who we don't get paid a penny now for any of this work. We just try to help and try to put together the pieces. And the funny thing was, the first year, different people that signed up, they were contacting me and they were saying, now we really want you to bring the experts in the field. we need you to bring the experts and and and they kept telling me that it was just me and i was like well who are they because i'm seeing more of them than anybody and i'm i don't know if i'm an expert i've just been you know seeing them for 16 years and i'm trying out this misophonia management protocol i made up here with sound generators you know trying to block and flood the auditory system and you know so but it was funny because they were very interested like could you find the real experts and i would say as the years have gone along we just had the sixth we remember we did have to skip i think i think we skipped like 2017. we didn't do every year because we could not find a place we could afford in los angeles and we wasted the year trying to find somewhere down there So we've kind of had seven years, but six conventions. And I'll tell you, as time has gone on, we have been able to find the leading people in the field. They come to the convention either in reality or they come virtually. And we've been able to present as best we can each year. If you read the research articles and so forth, We've had over 75, 80% of anyone who's published anything on misophonia in a peer-reviewed scientific journal. We've invited other people who don't want to come for various reasons, but we have included them. And we say our goal, you know, as the association is we're just like Switzerland. We're non-committed to any particular method or approach. We value all sort of reasonable, you know, approaches. And we try to provide a platform for those people. Sometimes we all sit and listen and our eyes widen and we're like, what? And sometimes we listen and we're like, yes, you know. But we are going to have everybody who... thinks they know something or has done something with it, come and be part of our, our meeting.

Adeel [31:52]: Yeah. Inclusive. Yeah. Which is, that's a great, that's a great, that's kind of, it's the opposite of what the reaction you were getting early on. So I admire you for, for being open. And yeah, we've heard some great, great talks. The, the legal one was particularly of interest last, I know last time that a lot of people are still talking about that one.

Marsha [32:11]: She was great. She was great. Well, it's twofold. The Misophonia conventions have two purposes. One, to introduce people to, you know, who've just found out, just identified. We want to provide fundamental information, but then we also want the latest and greatest in any advances, knowledge, approaches. But the second one, which is the second purpose, which has turned out to be, I think, just as important, maybe, is connecting with other people that have this

Adeel [32:44]: That's what a lot of us talk about. The sessions are great, but the lobby conversations, the dinners and lunches are just fascinating. Breakout groups. You just feel like you know these people without even really saying much to them because we've all had very, very similar experiences. It's just kind of humbling and kind of surreal.

Marsha [33:14]: How many conventions have you been to?

Adeel [33:17]: I've only been to two. The first one I was into was last year. It was here. I'm in Minnesota, so it was right here. And I had just found out about the conventions the year before, just after the Vegas one, I think it was. and because i was in that yahoo group like 10 years ago um and and then one reason another i guess i kind of i don't know i kind of dropped out of the dropped off of the community unintentionally but um or just kind of lost track and then um then i found out you guys were having conventions all of a sudden i would have you know i would have i would have gone to the first one but i just got busy um yeah so this is my second one i'll definitely want to be there in in philly um and i'm hoping stuff like this was just going to um get more demand i'm hoping You know, we can, yeah, I'm hoping, you know, maybe we can get a lot more than that. I guess the 200, I guess it depends on the venue that we'll get.

Marsha [34:12]: It does depend. But the one that we're going to be at, we try to do embassy suites because embassy suites have a room, a couple rooms with doors that shut as opposed to just a single hotel room. And our, you know, clientele has said they prefer that. And the one coming up Philadelphia has room for 250 people.

Adeel [34:32]: Great. Okay.

Marsha [34:34]: So that's exciting. But, you know, there's also more to it than just that. We set in place very early the system where we record each session, and then we tried to turn them into the good luck productions. They turned them into amazing. little videos so that you can watch uh and purchase and we try to keep those prices pretty affordable so even if people can't come to the convention or if there's a speaker they particularly wanted to hear you can you can download that and purchase that and then this year we at the very last minute we got a bug to i've been wanting to do live stream for several years and uh and tom dozier did figure out how to do live stream and we had about 30 people who signed up oh that's great and their their response was very positive and for people who can't travel you know or who are far away because we know a deal this is a worldwide problem we're just at the very tip of the iceberg here this is we're getting correspondence and letters from people in countries all over the world

Adeel [35:39]: There were a couple of questions that some people had sent in. And related to that a little bit was like, do you notice any trends amongst genders and different cultures in the folks who've been visiting your office or in your research?

Marsha [35:56]: I think I've seen over 10,000 people, at least with correspondence, phone interviews, in-person visits. It's just an enormous number in 23 years or something. Three quarters of the individuals appear to be female. It does tend to look like the onset is in the time of development we call pre-puberty. So that's just on the brink of where all these hormones start flooding into your brain and your body. Your body's producing them naturally, and so we believe... That has kind of an influence. I do. There's a genetic component. I cannot tell you how many, you know, dyads or triads of parents and child, a child that had a grandparent that had this. And a lot of people, you know, with misophonia, they keep it a secret.

Adeel [36:46]: Yes.

Marsha [36:47]: They don't like to tell people. They feel embarrassed. There's an element of shame here for a lot of people, which is unwarranted because... We have to really think of this like diabetes. If your child got juvenile diabetes, it's not a shameful thing. They didn't do anything. But for some reason, misophonia gets married. So that's a fifth thing. And then the sixth thing is just the population seems to have a higher IQ than normal.

Adeel [37:12]: Have you seen any correlation with autism, for example? That's something people ask.

Marsha [37:20]: Well, a certain percentage of people with autism do have hyperacusis and or misophonia. And well, the interesting thing about autistic children are people, they call it on the spectrum now. I have seen and certainly consulted with a number of people and I'm not, I don't think it's a prevalent domineering characteristic of autism. I don't think it's a primary characteristic, but I think just like any population, A certain percentage of those individuals also have mesophonia.

Adeel [37:54]: We talked about some of the funding going to the research. What are a few things that you think are kind of top of the list for you if you had money to give out that should be investigated?

Marsha [38:07]: you know, what I have talked to people about is funding to look at how does the brain recognize groups of frequencies that make up sounds? For example, because one of the questions people with misophonia often have themselves is why does it bother me when my mom does this, but it doesn't bother me when say my brother does that. Okay. That might be a good question. Right. And then in saying that a lot of people that are, the family members around and who are equally affected. So remember, misophonia is a family disorder because it's not just the person, it's their families. So one of my questions has been that, why is that? And that has been used to dismiss people with misophonia and their issues. You know, it's been used against them to say, well, you're just annoyed with me because it's me. But if it was really a thing, it would bother you all the time.

Adeel [39:04]: Right.

Marsha [39:05]: So I gave a lot of thought to this in my little quiet moments. And I have come up with this theory of sound prints that, you know, everything is one thing you have to understand. I could talk to you all day a deal. I can't do that. But one thing we have to understand, a fundamental neuro concept is everything in life is just transduced into electrical signals in our brain. Everything we do. how I'm sitting on this couch, when I look at my dog, when I smell the cake baking in the oven, when I touch a fuzzy blanket. Everything that I do here, see, touch, encounter, taste, turns into only an electrical pattern in my brain. So I know that that is chocolate and that is yogurt and that is a scrambled egg. I know very clearly from a young age the difference between those things and these signals that I'm getting. And so I thought about sounds because I thought, well, sounds are unique. Sounds are vastly unique. Like there's so much music in the world where there are billions of sound prints that we understand with our hearing. And for some reason in certain people, my brain marries um this particular sound of person x doing y whatever that might be and in my brain that triggers a ridiculously over amped physiologic response an electrical biochemical sugar uptake i don't energy use you can think about it in a number of different ways so these people's individuals these brains of these individuals for some reason take grab on to that sound print and they magnify it the way any normal person would do if I'm walking out of my aunt's farm in Idaho and I hear a rattle of a rattlesnake which I grew up over there so I'm aware I'm going to give a lot of importance to that sound if I'm walking around in her 2,000 acres and I hear a rattle of a rattlesnake, I am going to be incredibly alert because I know this is not a good sound. Okay. That, that sound print concept of mine, I want somebody to investigate that like a fingerprint, like it's a fingerprint, but it's a sound print. Why do these particular identifiable? Because you can use, you can use scientific equipment you see to record sound prints and you can get an exact frequency map altitude you know what you should call altitude amplitude right right frequency content scientists in speech pathology have been working on this stuff for years so what is it what is it about that particular combination of volume and frequency that evokes that response in that person and is it the same response they get when they see it but don't hear it

Adeel [42:08]: Right, for the microkinesia side of that coin.

Marsha [42:11]: What is that? So that's one thing I'm curious about. And then I think we could look at the genome, because I don't understand how 23andMe has said that people have misophonia for many years when, to what everything I understand, no one has ever mapped the genetic code for misophonia. So how is that that they know that, but there's no research project? When I called the House Ear Institute back in 2003 and I said, I have collected, you know, all these thousands of people with this. And the House Ear Institute said, oh, we could do a genetic study on that. We would need 500 blood samples. And I said, listen, I could get 500 people to drive over to your office today if you would do that. And they said, oh, and we need $2 million.

Adeel [42:59]: As you know, for treatment, I use music, noise cancelling, all that stuff. Why don't you take us inside your office? What kind of stuff do you prescribe to folks?

Marsha [43:15]: Well, one thing we know, it's from the audiology point of view, of course. There's psychology, there's psychiatry, which is unfortunately mostly pills, but there are some other. different approaches, you know, people are using. But in terms of audiology, what I got to thinking about was you have 70,000 auditory fibers and earplugs didn't seem to work very well in these cases. Earplugs and, you know, noise canceling devices are helpful. I think they are good. I strongly encourage people to use them. As a matter of fact, I Always talk about a toolbox because I try not to use the word treatment for misophonia myself because there really isn't a treatment yet. It's more sort of therapeutic approaches. Okay. Approaches like, man, I like to call it management. You know, like there's no cure for diabetes. You just manage it. there's no cure okay so so we're doing management and so um i noticed that back with those early cases that if i put sound generating devices on uh their heads in their ears and these units go fairly deep into the ears and basically my theory was that if we flooded the system you've got 70 000 active fibers in your auditory system and if we give every one of those 70 000 fibers something to do And we keep it busy and engaged and occupied, which is what broadband does. sound does that's what white sound does pink sound these broadband kind of sounds then the cell itself has less reactive power to pay attention to triggers i i know this for the i know this to be a fact because the patients i see have told me that when they go into a loud environment very loud which they actually often enjoy dances zumba places where the music is turned up and the sounds are loud, like they're out hiking along a big waterfall, the ocean, you know, they feel more comfortable. So this is kind of supported by their histories. So what we're doing now, we've transitioned in 20-some years. Initially, we were just putting these more Jastrowoff-style instruments on. But over time, what we've gone to is using sophisticated hearing aid devices that are meant for streaming from your... phones, basically the internet. So we're using streaming devices and streaming devices can be set up with whatever the patient enjoys. There are just dozens of apps out there in the world with sound bites that you can use to create. One of my favorites is one called Relax Melodies. And so again, these individuals, most of them have normal hearing. So the audiologist is going to turn off or really reduce the hearing aid to the point where it's non impacting because trust me the last thing people with misophonia like is everything made louder trust me on that one and so I always do a trial of a month I set the hearing aids to either off or like non amplifying and then we're streaming through and this wonderful app Relax Melodies you can make little recipes of sounds so one girl called me recently and she had made a sound to use when her family was eating So it was for the sounds you make when you're eating. And so she put in a crackling campfire, a strong windy night, a lightning storm. And she said it was one of the things. Oh, a motor running. And she could combine those four elements on her relaxed melodies. And she can play that through her right in her ears. Nobody else can hear it, but you can get it really loud. And she could eat dinner with her family for the first time in about four years. Maybe not every meal, but some. This was a big triumph for her. Generally speaking, that's what audiologists do. We put sound devices that look like hearing aids. They're pretty invisible. Kids wear them to school. Adults wear them on the job. You don't get any backlash because under the ADA, the American Disabilities Act, if you need hearing aids, you can wear hearing aids. okay there's nobody gonna say you can't wear hearing aids here so and they can use them very about 85 percent of these people have said that they're better with the units than without and they're very helpful and so we have about 15 percent of people that return them and lots of times honestly that maybe the child is a little bit too young or they are expensive but we have had some pretty good luck with getting them paid for on people under the age of 26 who are still on their parents' insurance, for example, and more companies are actually starting to wake up and will pay for devices for misophonias.

Adeel [48:21]: through insurance or through insurance?

Marsha [48:24]: Yeah.

Adeel [48:24]: Yeah.

Marsha [48:25]: You have to see if they have a hearing aid benefit or sometimes we can call them durable medical equipment. We've struggled with this, you know, for 20 some years, but a deal, I don't think it's unusual because insurance companies are very reluctant to pay for anything that's, you know, outside the box. And so we just keep, we just keep pushing it and we'll keep pushing it. Audiologists, you know, one other thing is audiologists have a code. We have a diagnostic code. That's another reason why people come to us. We have a diagnostic code. for abnormal auditory perception we can diagnose you with a code that is that flies by every insurance company just fine there is no specific code for misophonia yet they're still sort of fighting it out between the psychologists and the neuroscientists you know is it physiologic is it ideation in your mind isn't psychological so it's a little bit frustrating for people but remember that your audiologist has a code And we can use that code for you. And then through that code, you can have provision of whatever benefits your insurance does provide.

Adeel [49:33]: And another question that's come up is, you know, accommodations in the workplace. Have you written, like, if you had to write, you know, notes to kind of get maybe help people in a closed office? How does that work? Is that easy conversation to have with the employer? Like, what have you, yeah, what have you seen there?

Marsha [49:53]: well again people who have uh abnormal auditory perception are protected under the american disabilities act of 1999 it is something that most many audiologists are not necessarily familiar with but there are a number of us out here practicing who are and i've helped oh so many people get accommodation it's a sad thing because these offices in the last 20 years they kind of went from small groups of private offices to this wonderful new concept of the open office. So you've got a hundred people like three feet from each other. It's insane.

Adeel [50:32]: It's insane. It's insane.

Marsha [50:34]: Yeah, I know. It's unendurable. I'll tell you two quick anecdotes. Yes, please. A lady working at a payroll office down at a prison, at a state prison, and she called me and came in because somebody had found out she had mesoponia. As a matter of fact, it was her supervisor. So her supervisor used to stand behind her chair and do things to make her react because she thought it was funny. And this woman complained to different people. Nobody listened to her. She had been working there for like 20 years. And this was just a horrible situation. And I discovered in our interview that her group down there was part of a union. So I called the union steward up that very day. And I said, you know, I've just diagnosed this woman with this particular condition. And one of the problems is that she needs to be away from these, you know, kinds of very disruptive people. I'm not going to say what they are but noises and sounds that the supervisors making on purpose and initially they were surprised they didn't know what to do and then I mentioned the American Disabilities Act and the fact that you know this was a really serious case and I was thinking of referring her to legal representation because he was being abused on the job and you know what the next morning they call they had found an empty office in a file room that was hardly ever disturbed and they moved her in there she kept working and that that supervisor never bothered her again but so you have this powerful angry audiologist you know calling up now that's it's what is nice with the doctorate because i can say this is dr johnson and then they're like uh-oh and then doctors and lawyers yeah they don't want to deal with doctors and lawyers so the the second one was more disturbing i think it was the state representative from the midwest who was a lobbyist and she worked in an office it was very crowded at the capitol and there was an individual next to her that ran a fan all day and this was very bothersome to her and so she did flex hours and she went in when that person wasn't there and the thing was um he would leave his fan on 24 7 and she would go turn it off when she was working And he actually complained to his supervisor. She was messing with his personal equipment. So she was informed that she was no longer allowed to turn his loud fan on when he wasn't there. And, you know, I went to bat for her and we wrote letters and I complained and called and discussed it with different people. And, you know. we could not prevail and she ended up working out of her house finally she had to leave that position and work out of her house as a lobbyist so that was really astonishing to me at the state capital level so you can't win all of them but i would say to you 90 of employers if the employee is a good employee If they're a terrible worker, trust me, it's not going to go very far. They'll figure out something else. But I would say to you, most of the time, these employers are so accommodating. Most of the time. But the audiologist or the physician or whoever's helping this person has to be very clear, very strong, know the law, right? And you have to get support maybe from a couple other medical providers, whether the psychologist says she's got an anxiety condition or he has a, you know, you have to maybe get two or three points of view. But in generally speaking, They will make accommodation. And I think it's worth doing. I really do. It's not an easy field in the audiologist, of course. You don't get reimbursed for those kinds of things because there's no coding for it. But still, it's setting a new standard for, you know, working with people that might have a little difference and just need a little accommodation. Flex hours, telecommuting. There's no reason why in today's world, many people can't do some of their work at home.

Adeel [54:38]: No, and that's exactly, and that's great. This new era, this post, hopefully post-open office era is all about telecommuting. Um, yeah, more flexible hours. Um, but yeah, more flexible office environments. I think, uh, I think we should all jump on that bandwagon, whether, whether it's talked about by misophones or not. I just tell people, we just got to attach ourselves to that or attach our voices to those causes.

Marsha [55:04]: Well, you know what I tell my teenage patients. So the ones that are getting ready to go to college, I say, what are you going to major in? And they tell me, and I say, well, I'm going to give you one piece of advice. Go on and get a graduate degree. Because I said, you want the office in the corner with the door that shuts and then they laugh and they look at me but you know they know exactly what i'm talking about these kids i'm like you don't want to be on the floor that's not your future and that's i think that's important

Adeel [55:38]: So, yeah, we should start wrapping this up soon. But you just reminded me about something that has come up a lot is how relatively fortunate this next younger generation is that there is at least some awareness. You and I both know people who've had this for 50, 60 years. And they've, wow, they've got, you know, terrible stories from a long time ago. But the new generation, especially with the work you guys have done at conventions, having a separate family track for kids, what led you to start that family track? And what are your thoughts on young people growing up in Mississiponia today?

Marsha [56:21]: I think it's much more inspiring now and enlightening than it was when we first started. Mostly it's, you know, demand driven by our evaluations from our conventions. Every year we collect carefully data from people. What did they like? What did they dislike? What do they want to see happen? And there has been more of a demand. Although, you know, two thirds of the people that come to our conventions are adults. But there is about 30 to 35 youth that are under 21 years of age. And it's been fantastic to watch those kids grow up. The first ones that were coming, like our good friend Samantha, you know, she started out around 13 or 14 and back in 2013. And now she's 21, 20. So we see these young adults growing up and doing presentations at school and participating they're making movies they're painting pictures they're feeling a lot more confident about themselves but i will i i do hope that we can continue to serve both the adults who come and the youth and there are certainly more older people coming forth the oldest patient i've encountered myself has been in their 70s it's a very tiny number of people there's still thousands and thousands of people out there that don't know what they have they've just assumed and figured out that they have some problem and they don't know what it is and one of the most interesting cases I had recently was a couple that came in that had been married over 50 years and they were both in their late 60s and they had married in teenagehood and he had had misophonia all of his life and he had well since he was like nine he had no idea what it was he thought he had hyperacusis They came in and they had been married. They had four children and they described their lives to me. And it was like talking to Rip Van Winkle. I'm just telling you, 50 years of married with misophonia and just thinking he had a bad temper. He wasn't very kind. He didn't participate in his trigger. Unfortunately, it was her voice. So every situation, this interview ended up becoming a two or three hour. evaluation because they had decades of hurt feelings and history and they had never heard the word misophonia before a deal so let's hope let us hope that if nothing else no child going forward you know will be misdiagnosed or undiagnosed for what 51 years yeah yeah It's just, it breaks my heart. And that's why I keep going is the fact that these families need help. Children need help. Adults need help. You know, they need support, education, research, awareness. And that's what we're totally committed, you know, to doing.

Adeel [59:15]: And yeah, Marsha, I mean, we appreciate everything you've done with the association and the conventions and appreciate you fighting the good fight. And I think there's now, there's energy building to kind of like...

Marsha [59:31]: um share some of that share that fight and uh yes yes absolutely cindy don't forget cindy and jolene yeah of course right here the whole time and yeah but a deal what you're doing is you're taking it to the next step and this is fabulous and that's the beautiful thing right now about misophonia whatever you're interested in whatever area you want to get involved pick it up move forward there will be a tremendous you know outcry of happiness because it's wide open right now nobody owns this nobody's got the only answer nobody's right i don't care what they say don't listen to them if somebody says to you i know exactly what's wrong with you and how to fix it maybe run away because they're that's a clue right there that they're not they may be a little bit less open-minded than they need to be at this point But if you see a need like you did and you jump in, Yahoo! Wonderful.

Adeel [60:26]: Yeah, you can help out. You can help me out. You can help the association out. There are Facebook groups popping up everywhere, regional Facebook groups. There's regional video conference calls going on. Yeah, we sponsor those.

Marsha [60:39]: We sponsor those through our Zoom conference. Our Zoom option, which we bought last year for like $149. Anybody who's a member of the Misophonia Association can use that, have a regional meeting like you guys are doing. Oh, wow. And, you know, we're happy to have you on the Zoom link and go for it. I think it's great. Why not?

Adeel [61:00]: And there's people. One thing that came up at the convention, people are willing to want to meet up in person. I initially thought like a couple of years ago that, you know, that would be kind of weird. People might trigger each other. But there is such a demand for community that, you know, if you if you meet somebody else, just plan a meeting, announce it somewhere and you will find people. I love that.

Marsha [61:22]: Well, people laughed at us because they said, you can't have a misophonia convention. We said, yes, we can. The first convention here, I got voodoo donuts. We just make sure that the food and everything is really soft and we provide plenty of places to eat it. And you know what? We don't let anybody drink water or drink coffee in the meetings.

Adeel [61:41]: I got kicked out of one meeting.

Marsha [61:42]: I forgot that. We have the drink police that run around the meeting and say, oh, yeah, I have to take that out. But, you know, we like to get together. It's wonderful.

Adeel [61:52]: It does. It helps. It helps a lot. And so I encourage anybody who's like on the fence about it, get involved, come to try to come to a convention or just meet up with people. Spread the word. So, yeah, I guess this is kind of like you said, I know we can go on forever. Maybe we can use an annual or more often kind of thing to have you on or, you know, in Sydney and Jolene. Is there anything else you want to kind of plug?

Marsha [62:20]: Well, we have a job opening right now. I'll mention that because Elise is moving on from being our manager for the association. So we're looking for somebody right now that's got a strong interest in website maintenance and communication sort of details and organization. And again, if anybody has a nomination for any speaker in the upcoming Philadelphia, we're trying to get, at some point we'd like to get a pharmaceutical expert who knows about medications and how they could interact. Someone to talk about medications, you know, that could be applied for misophonia, for even a some of the sub levels of conditions, you know. We're always looking for people who want to come and speak or present or like the young lady that brought her artwork, you know, or a video that you made. So, you know, spread the word and have them send in a little nomination for a speaker. We'll get in touch with them and see if we can get them to come to Philadelphia in October.

Adeel [63:19]: That's great. Yeah, everybody, please. It would be great to have as many people as possible coming to that Philadelphia. We'll run up the rocky steps in Philadelphia and take our picture from there.

Marsha [63:30]: Well, thanks again. Okay. Well, thank you.

Adeel [63:34]: Thanks again, Marcia. Yeah. That was a long one, but as you can tell, Dr. Johnson is incredibly passionate about misophonia. I can't wait for the day more medical professionals and researchers share even a fraction of that. So we talked about a lot of things that I've linked to in the show notes, so please check those out. If I'm missing anything, please contact me on Instagram or Twitter or by email at hello at misophoniapodcast.com. While you're there, please leave a review, especially in Apple Podcasts. The music is by Moby and I'm wishing you a very happy 2020 full of peace and quiet.

Unknown Speaker [64:37]: you Thank you.