Hearing Matters Podcast

From Silence to Sound: A Journey of Hope feat. Suzanne Picerno

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Have you ever felt stuck in the "gray zone" of hearing loss, unsure where to turn for help? Join us as we explore the inspiring journey of Suzanne Picerno, a remarkable advocate and professional in the hearing healthcare field. Suzanne candidly shares her personal battles with undiagnosed hearing loss from grade school to college and how she finally sought help after a bout of vertigo. Her story is a powerful reminder of the importance of self-awareness and early diagnosis in managing hearing health. Through her creative work, "Eddie the Elephant's Magical Ear," Suzanne touches hearts, illustrating the emotional challenges and triumphs of living with hearing loss and the life-changing impact of hearing technology.

Listen in as we discuss the transformative experience of living with cochlear implants and the substantial commitment they require. Suzanne shares her firsthand insights into transitioning from functional deafness to better hearing, offering a unique look at overcoming challenges and embracing new technology. As we congratulate Suzanne on her exciting plans to expand her practice to Arizona, we reflect on her resilience and passion for advocacy in the hearing healthcare world. The episode wraps up with an inspiring conversation on her ambitious future endeavors and the enriching knowledge exchanges that her journey entails. This episode is packed with heartfelt stories and valuable insights for anyone touched by hearing loss or the advancements in hearing technology.

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Blaise M. Delfino, M.S. - HIS:

Thank you. You to our partners. Sycle, built for the entire hearing care practice. Redux, the best dryer, hands down. CaptionC all by Sorenson - Life is Calling. CareCredit - here today to help more people hear tomorrow. Fader Plugs - the world's first custom adjustable earplug. Welcome back to another episode of the Hearing Matters podcast. I'm founder and host Blaise Delfino and, as a friendly reminder, this podcast is separate from my work at Starkey.

Dr. Douglas L. Beck:

Good afternoon. This is Dr Douglas Beck with the Hearing Matters podcast, and today we're speaking with Suzanne Pizzerno, and Suzanne is very interesting and very well-educated in hearing health care matters. She's worn hearing aids for a number of decades, she's been a hearing aid dispenser for a few years and she has bilateral cochlear implants. So, susan, welcome, I'm glad you're here.

Suzanne Picerno:

Thank you very much. I appreciate you having me on Doug.

Dr. Douglas L. Beck:

Absolutely so. I want to just tell a little bit about some of your accomplishments, but then I want to talk about your journey. Where is your clinical home-based practice?

Suzanne Picerno:

Right. So it's a little bit in transition. Right now I have a practice in Indiana and I'm currently in the process of getting my licensure in Arizona as I'm taking up dual residency, so I'll be starting that soon but the practice will be pretty much the same.

Dr. Douglas L. Beck:

All right, so in Indiana and in Arizona soon, and that's called At Home Hearing Services, I believe yes. And then you wrote a kind of fun and interesting book called Eddie the Elephant's Magical Ear. So yeah, tell me a bit about that. Oh, and there it is. I love that.

Suzanne Picerno:

Right. So this actually was kind of God inspired, but literally I wrote the first edition in 20 minutes and then I spent the next year rewriting it about 10 times. Yeah, I wrote the entire book and did all of the animation and everything on an app, believe it or not? Sure? So Eddie is a little elephant that breaks and loses his ear. Without his ear, he cannot hear. So he was on a journey to find his ear. Along the way, he meets a spider who turns out to be this amazing friend who helps him discover compassion for himself because a hearing loss journey can be very sad and be very unexpected at times and he learns the benefit of technology.

Suzanne Picerno:

So beneath that is the message, and the intention is twofold. The first intention is for parents to teach children what's too loud heard for, too, and how that can permanently damage one's hearing. And the second is for parents themselves to say, hey, this is what grandma has behind her ear, or look what mommy just got behind my ear, and it's a tool to help me hear, versus mommy having to always say what, what, what.

Suzanne Picerno:

So that's the intention of it, it and I just came out with the second edition of it and that's uh been released on amazon, yeah I saw that.

Dr. Douglas L. Beck:

I saw that, so it's on amazon, it's commercially available and people could look for eddie the elephant's magical ear, uh second edition right and the subtitle now is a tale of hearing loss, friendship and hope. All right, I love that.

Suzanne Picerno:

Now tell me about.

Dr. Douglas L. Beck:

Let's start with when did you first get diagnosed with hearing loss, how old were you and what was that about?

Suzanne Picerno:

Yeah. So I was in grade school and it was one of those situations where you don't really know what's happening. The nurse calls you in and you go into the little booth and they say raise your hand when you hear a sound. You raise your hand. You raise your hand, you raise your hand. Everybody else goes back in the room and you get called out again and again and after a while I just sat in that booth and I thought ashamed, embarrassed, I didn't know what to do and I I knew in hardly something was wrong, but nobody was saying anything and I just decided I'm not raising my hand anymore how old were you?

Suzanne Picerno:

I'm not even sure, but it was sometime in grade school, because I know we moved out to Arizona when I was nine, so sometime before, before the age of nine, so young enough that it was a shaming experience. Yeah, yeah, and it can be if it's not handled well, it is.

Dr. Douglas L. Beck:

It's embarrassing, it's shaming and people want to hide from it. And so then I have to presume you were referred to a hearing care professional.

Suzanne Picerno:

Actually, well, no, what happened is I went to junior high school and when we moved out, we went to, we switched schools, and it was until I was in junior high school that it became a problem.

Dr. Douglas L. Beck:

And so what?

Suzanne Picerno:

was the issue in junior high school where it changed, where you pivoted to getting an actual diagnosis. I was in band and I was playing trumpet and I wasn't hearing. I knew I wasn't hearing as well as I could, and at that time they didn't do anything. I think it must have been just a mildish loss and in those days they didn't really do anything about that so much. And so I was in college then. Oddly enough, I did initially a double major and the second one was speech pathology and audiology, and I dropped that down to a minor towards the very end when I found out that I had a hearing loss.

Dr. Douglas L. Beck:

All right. So wait a minute. Wait a minute. So you went all through school and into college no diagnosis, no hearing aids. Correct, correct, and I know your grades were very good. I saw your report card. I know you're very, very smart. So then, in college, because you had become self-aware of communication disorders, did you seek help? Or how did you get to an audiologist, finally, right.

Suzanne Picerno:

I got an inner ear infection, I got vertigo and I became acutely aware of myself saying what, what, what, what. I was one of those people that was self-aware enough to understand that this isn't right. So I went and got my first set of hearing aids. At the time I was like 23 years old, 24 years old, 25, somewhere in that mid-level 20s.

Dr. Douglas L. Beck:

It's kind of amazing that you did so well in school, because I don't know how you can do that without a full sensory input or without total communication or some sort of assistance.

Suzanne Picerno:

It's like this.

Dr. Douglas L. Beck:

Yeah, oh, my goodness. Well, so you're in your early 20s, you get hearing aids. Did your world change? Was it totally different or was it pretty much the same sort of thing?

Suzanne Picerno:

It was different, and back in those days, though, hearing aids were so much different too, because they were analog, so it just made like everything louder, and as my hearing loss progressed, so did my hearing aids. Because my hearing loss, I was told. I went to the House Ear Clinic, which was a large clinic in Los Angeles, and I was told here I am in my mid-20s and I was told that eventually I would go deaf and there would be nothing I could do about it.

Dr. Douglas L. Beck:

So roughly. What year were you at house? Do you have any idea?

Suzanne Picerno:

I don't remember, and I know you asked me that in a previous conversation we had and I haven't been able to find the papers, but if I do I'll let you know. No, let me know.

Dr. Douglas L. Beck:

Because I might have seen you, I don't know, but yeah, because I was there in the early 80s but I was mostly in the research labs. I wasn't really seeing patients clinically, but anyway. So they told you that your hearing loss was progressive and they told you that you were probably going to lose it one day. What did that feel like to hear that?

Suzanne Picerno:

That was really scary and it was really frightening because I already felt disadvantaged and I don't think if you told someone, hey, would you like to go to deaf someday, they're going to go. Yeah, I'm all in for it. You know, because one of the things that's problematic with hearing loss is we don't realize as, even as a hearing professional, as my hearing progressed I got used to hearing worse and I didn't realize I was hearing worse until other people pretty much let me know that I was either not meeting an expectation or not hearing them. And of course, the person to say is be defensive and say, yes, I am, I heard you, just fine, you know and then realize later that oops, yes, I didn't.

Suzanne Picerno:

So my hearing loss got worse and my hearing aids got bigger and bigger and bigger and bigger got worse and my hearing aids got bigger and bigger and bigger and bigger.

Dr. Douglas L. Beck:

And then eventually, what was it that made you say, okay, it's time for a cochlear implant? What bridge did you cross that all of a sudden? That was the answer.

Suzanne Picerno:

Hearing loss was an extremely painful journey for me and anyone who's listened to any of my previous podcasts on other shows and such been on some of your colleagues' shows, Sure, his podcast on other shows and such. He's been on some of your colleagues' shows, Sure. I don't need to reiterate the exact, but it was very, very painful because hearing aids weren't and I was thinking about this morning, they were not what they are today.

Dr. Douglas L. Beck:

Sure.

Suzanne Picerno:

Today I could work a high-level corporate job and I got to a place in my career where I was working in molecular diagnostics at a mid-level management position, making a lot of money, and yet I knew in my heart of hearts that I couldn't understand what scientists were saying, and in meetings I couldn't understand what people were saying and I was making mistakes that look like incompetence but really they were not, that I was blatantly doing what I was told not to do. I was doing this, do something, or I didn't realize that hearing impaired people interrupt people more often things like that, you know, because I thought the person had stopped talking.

Suzanne Picerno:

Often things like that, you know because I thought the person had stopped talking. Sure, so I was seen as a person other than I actually really was and I was very insecure and trying to hide that because I was so ashamed.

Dr. Douglas L. Beck:

Yeah, and I'm so glad you're using those words and expressing those thoughts, because I think that those are the go-to feelings, you know, and I think also it increases anxiety and social isolation. I mean, there are so many negatives that one would experience, particularly when hearing loss is untreated, and treatment is really the key. And you're right. I do want to say that the hearing aids we have in 2024 and going into 2025, the professionally dispensed products are truly excellent and have been game changers for many people. But let's go back to you. So what year did you get your cochlear implant, your first one?

Suzanne Picerno:

So five years ago, a little bit more than five years ago, I got my first set, and the year prior I've sat in the gray zone for five years, really struggling Absolutely in the gray zone where I was functionally deaf but didn't quite meet the criteria, faking my way through the world because I was intelligent, because I had a lot of experience, because I could lip read to a degree, and inside I felt like a fraud.

Suzanne Picerno:

Inside I was really afraid, and so I fought, I fought to get them, and it wasn't until my second evaluation, and at that time then I was hearing aid dispenser myself. So I was in the booth and somebody said, you know, said the word toothpaste, I heard it as toothpaste and I would go toothpaste, you know, it didn't matter how well you mixed those words up, I knew them all. And it wasn't until somebody said say what you hear, not what you know.

Dr. Douglas L. Beck:

And then boom the real source came out, so you got both cochlear implants at the same time.

Suzanne Picerno:

Yes, I did, I had a great surgeon who fought for me for that, because I had worn hearing aids for 30 years. I'd done FM, I'd done Bluetooth, I was a dispenser myself for at that time, almost 10 years, and I was motivated and I think the thing when I hear people talk about cochlear implants and they're thinking about getting them one of the biggest factors that I say you have to want them.

Dr. Douglas L. Beck:

Yeah, oh, that's a good point. I mean yeah, because you're not going to get cochlear implants and all of a sudden, everything's great, you get. You know, you have to do a lot of work. There's a lot of programming, there's a lot of energy that goes into making cochlear implants work and nobody with a cochlear implant hears normally. People with cochlear implants like you, you do very, very well, you do extraordinarily well, but you don't have normal hearing. And at night, as my dear friend Dr Ashley Brogan says, she wears bilateral cochlear implants and she talks about. You know, at night, when I take them off to go to bed, I'm deaf again and you know, that's a very shocking and revealing reality.

Dr. Douglas L. Beck:

every day you get to relive that.

Suzanne Picerno:

And it's scary.

Dr. Douglas L. Beck:

Yeah, it's scary. Because if there's an emergency you won't know.

Suzanne Picerno:

Yeah, and I tell people you know it's not like I hear and don't understand, because if you say, oh, I'm deaf, I mean I hear and I don't understand, but it is without sound. Yes, absolutely. And so you've had bilateral hearing aids five fantastic. And he really championed for me to get the bilateral cochlear implants the first time around. And also I, literally just two weeks ago, got my brand new ones, which is the second generation of Kanzos through Cochlea, and I had no problem getting those authorized as well. And I will tell you it's like hearing. It's the difference between first generation and second generation Astounding.

Dr. Douglas L. Beck:

So to be clear, just for people who are not familiar with cochlear implants the implant remained the same, but you got a new processor, you got an upgraded processor. Yeah, and oh, that's great. So they're held in For people who don't know about implants the cochlear implant is inserted into the cochlea. There's a specific area within the cochlea and it winds up along the walls of the cochlea, but then there's a magnet placed inside and that connects with a magnet on the outside, so those two are coupled and the information transfers across those two. Now, just like any other sort of product, the stuff that's out here, we can update and upgrade, and that's the processor upgrade that you just got. And you're saying that's quite good, right?

Suzanne Picerno:

Yes, all right, so what do?

Dr. Douglas L. Beck:

you tell me, for people thinking about cochlear implants, what are your two or three most prominent thoughts on living with cochlear implants? What are your two or three most prominent thoughts on living with cochlear implants? Tell me about that. What's the best? What's the worst?

Suzanne Picerno:

Well, the best is, if you are functionally deaf and you really are getting no benefit with hearing aids and you are wearing the top of the line, you have to be wearing the top of the line. A lot of times people think, oh, all hearing aids are the same. No, to be wearing the top of the line. A lot of times people think, oh, all hearing aids are the same. No, hearing aids. The truth is, you do get what you pay for, right, and it is just the blatant truth. So with cochlear implants, I think you have to. There's only three brands that make them and I think you have to look at each brand. They all have their pluses and minuses. I think you have to look at each brand, what the differences are and what your life goals are. Are you someone who wants to be underwater all the time? If so, there's a brand that's a little bit better, I think, in terms of what they offer and how to protect them. Sure, you know things like that. How often are you willing to work?

Suzanne Picerno:

Because you have to work at it, I tell people it's like all you hear at first is Morse code. You hear plus and minus, and everything sounds like that, but at different pitches. So it's literally that's what you hear first, and then it sounds like mickey mouse, and then monotone, and then you can't tell the difference between what's a man's voice and it's a woman's voice. You go through the drive-thru at mcdonald's, for example, and you don't know who you're talking to. You know what they said, but you get there like, oh it's, it's a girl, or oh, it's a boy, you know. And then what's familiar awakens your brain. So a spouse's voice, a friend's voice will suddenly start to sound like their voice again. And then what comes?

Dr. Douglas L. Beck:

This is a common story that oftentimes when people are, you know, after surgery, it's four to eight weeks until you get programmed and the initial program does not sound great. Most of the time the audiologist works to make sure the sounds are comfortable, they're not too loud and your brain has never heard these sounds before, so it's brand new. But you have language, so your brain will most likely learn to make sense of this over time. But the most common one that I heard because I've been doing research in cochlear implants since 82 or 83, most common is just what you said is Mickey Mouse or sounds like Donald Duck and you hear these very unusual sounds. But then after a month or two or three, depending on how hard you work and how well everything is going for you, things start to come in focus and you can start to identify voices. Now you and I only met a month or two ago and you're doing and we're.

Dr. Douglas L. Beck:

You know this recording is not an easy task. This recording is on the internet right now. I'm in Texas, I think. Where are you? You're in Arizona now, or Indiana.

Suzanne Picerno:

Arizona In.

Dr. Douglas L. Beck:

Arizona. So you know, we've got 800 miles of internet between us and you're on your computer, I'm on my computer. There are no captions, there's no titles. You're understanding every word I'm saying and responding, you know, appropriately. So your success is more than obvious and it's praiseworthy because you've put in the time and the energy to do the very best you can with this, and I think that's fantastic.

Suzanne Picerno:

Well, thank you. It's been quite the journey and the thing that's actually now only five years that's coming to me is music.

Dr. Douglas L. Beck:

Yeah.

Suzanne Picerno:

Music is cause. They may cook their implants for speech, but not for music, and so that was the last thing, and only now and again it started with. It's embarrassing. I'm dating myself here, but I stopped listening to music in the 80s okay.

Dr. Douglas L. Beck:

Well, all the good stuff was over then I know really it's true. I mean yeah, so it's that we're gonna get in trouble for that, yeah I know well they can come to me.

Suzanne Picerno:

I have a sister dog who's a grammy awards uh, grammy voting member and has been nominated so she got all the singing voice. So if they want some help with that, they can come and I'll refer to them Right, right.

Dr. Douglas L. Beck:

So what music are you now listening to? That makes sense.

Suzanne Picerno:

So I'm getting to a point. You know, like the Karen Carpenters U2, you know things like that.

Dr. Douglas L. Beck:

Well, karen Carpenters, for those not familiar, she and her brother Richard formed a band called the Carpenters. They did original material but it was mostly vocal. You know there's piano and strings and stuff, but it's mostly a vocal presentation from the Carpenters and very nice mainstream harmonies, things like that U2, on the other hand, very different, but that was the 80s, I guess. And are you able to follow Bono's lyrics?

Suzanne Picerno:

Yes, I am now Actually instruments I was able to pick up before I could pick up voices, and it was interesting because live singing I did fine with, but recorded singing was so much harder and, uh, there were the quality of people's stereos right there were stereos. It was like it just was like a huge screech and it was painful yeah, you know. So it wasn't the volume, it was just that level of sound and my brain trying to make sense of it.

Suzanne Picerno:

So it's taken quite a while and I'm forcing myself to, because I went so many years without music that now I consciously I do a lot of driving in Phoenix. There's a lot more traffic in Phoenix than there is in a small town in southern Indiana.

Suzanne Picerno:

So, I spend a lot more time driving and I force myself to put on the radio and to listen and to really work at it. And there's also apps, and that's the beauty. Today, too, there's a lot of apps that help you with sound, but you do have to really work at it. I know a couple of people who have not done well.

Dr. Douglas L. Beck:

You know, the only suggestion I would have because you're doing great without my suggestions, but I would go back to the music that you listen to as a teenager, you know, because that's deeply embedded in engrams in your brain, and for me that would be, of course, the Beatles, eagles, crosby, stills, nash stuff like that.

Suzanne Picerno:

Yes, yes, yes, yes. Those were my favorites.

Dr. Douglas L. Beck:

And because you know how that song goes, because you're already familiar with Desperado or Hotel California or whatever it is when you hear it through your implant, your brain knows what it is and starts to connect.

Dr. Douglas L. Beck:

You know how you're perceiving it now versus how you're remembering it and it's great training. We used to say 20 or 30 years ago we used to recommend new implant. Patients should really work hard with books on tape back in the day, before digital and you know people would get cassette recordings and they could read along with the narrator to you know to learn how to better understand sound.

Suzanne Picerno:

Exactly, and you know it goes back to any type of how do we learn?

Suzanne Picerno:

We learn through hearing vision spoken word and touch, and so I always tell people to take a book, read the book, run your hand along the line, say it out loud. I do a lot of work with people in terms of patient advocacy. I teach people how to stand up for themselves. I teach them how to get that seat in the restaurant that they need to sit at. I teach I ran into a woman at Costco believe it or not, nothing against Costco but her health insurance wouldn't let her get new processors. She had her processors for 12 years. I gave her my card. I said you need to call me. I don't sell cochlear implants, but I can help you get what you need, so that you get new processors, because you deserve it.

Suzanne Picerno:

It's not a hearing aid, it's a medical necessity.

Dr. Douglas L. Beck:

That's a great point. I've spoken with a few people who do that sort of advocacy and it's a very important role because the cochlear implant companies are happy to help support that as well, to make sure that patients are winding up with the best possible technology. So I'm glad you mentioned that. Suzanne, it's been a pleasure speaking with you. I want to thank you for your time, your advocacy, your knowledge, your book, and I'll look forward to you telling me that you've moved to Arizona and completed that journey. I know that's a hard thing to do moving cross-country and opening a second office but I think you're going to do great at it, so congratulations.

Suzanne Picerno:

Okay, doug, thanks for having me again. I appreciate it. My pleasure, nice to talk with you this morning, all right?

Dr. Douglas L. Beck:

have a great day. Bye, thank you so much.

People on this episode

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Blaise M. Delfino, M.S. - HIS

Host
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Dr. Douglas Beck

Co-host