OTE 32                Transcript
EPISODE 32


[INTRODUCTION]


[00:00:00] ANNOUNCER: Do you enjoy listening to On the Ear, but wish you could earn ASHA CEUs for it? Start today. Speechtherapypd.com has over 175 hours of audio courses on-demand, with an average of 19 new audio courses released each month. Here's the best part, each episode earns you ASHA Continuing Ed Credits. Oh, no wait. This is the best part. As a listener of On the Ear, you can receive $20 off in annual subscription when you use code Ear21. Just head to speechtherapypd.com to sign up and use code Ear21, E-A-R-2-1 for $20 off your annual subscription.


[00:00:49] DAKOTAS: You're listening to On the Ear, an audiology podcast sponsored by speechtherapypd.com. I'm your host, Dr. Dakota Sharp, Au.D, CCC-A, audiologist, clinical professor and lifelong learner.


While I primarily work with pediatric cochlear implants and hearing aids, I am absolutely intrigued by the many areas of audiology and communication in general. This podcast aims to explore the science of hearing, balance and communication with a variety of experts in hopes of equipping you to better serve your patients, colleagues and students. Let's go. We are live and On the Ear, brought to you by speechtherapypd.com.


[INTERVIEW]


[00:01:35] DAKOTAS: Since the 1980s, cochlear implants have been providing meaningful sound to children and adults who are deaf and hard of hearing. As clinicians, we’re often tasked with guiding patients along their hearing journey with the devices, hoping to provide the knowledge and skills to empower them to achieve success. Although we'll ask questions and do listening checks on their sound processor, we can never really hear what the device sounds like to them, let alone actually walk a mile in their shoes and feel that emotional journey they're experiencing.


Today's guest is an inspirational leader in this field. She's a cochlear implant recipient herself and she is going to help us understand that perspective even better. Donna Sorkin is the Executive Director of the American Cochlear Implant Alliance, a national organization devoted to expanding access to cochlear implantation for all who may benefit. She has had a long career and advocacy for people with hearing loss at for-profit and non-for-profit entities. She was previously executive director of two US organizations, the Hearing Loss Association of America and the Alexander Graham Bell Association for the Deaf and Hard of Hearing.


Miss Sorkin served for 11 years as Vice President of Consumer Affairs at Cochlear Americas, where she led public policy initiatives and other activities aimed at the broad life needs of cochlear implant users, including insurance coverage and reimbursement, habilitation for children and adults and educational needs of children with cochlear implants. She has served on federal, corporate and university boards, including the US Access Board as a presidential appointee, and the National Institute on Deafness NIH Advisory Board. She previously served on the Advisory Board for Gallaudet University. She holds a Master's in Public Policy from the Kennedy School of Government at Harvard University.


She is an inspiring leader, a phenomenal speaker. I've watched her awesome, I guess, you'd call it webinar on audiology online, on providing improved care. She's just a powerhouse in this field. We're so excited to have Donna Sorkin. Thank you so much for joining me, Donna.


[00:03:24] DONNAS: Thank you so much for having me, Dakota. It's really a pleasure to be with you.


[00:03:29] DAKOTAS: This is going to be really exciting. I know that when I reached out to you originally, I was like, “I want to talk about whatever you want to talk about.” I think, one of the things you mentioned is just — because I think, something you're passionate about too is how music sounds for cochlear implant recipients. Because for so long, it's always just been the school of thought that if you get a cochlear implant, music sounds bad. That's just the way it is. What we're learning is that doesn't actually necessarily have to be true at all for a lot of people. I'm excited to talk about your experience and how things sound. Before we even get into that, could you tell me a little bit about your hearing journey? I think, you have one implant, right? Are you bilateral?


[00:04:05] DONNAS: I just have one, for different reasons. I was implanted, actually in 1992. Almost 30 years ago. I was a really early adopter. As a child, I always say nearly normal hearing. When I would be tested in school and they used to test us in school in those days. I would be pulled out for additional testing, because I had some high-frequency hearing loss. I was at that point, normal, probably through about 4,000 hertz. I had a pretty normal childhood hearing-wise. We didn't pay any attention to people with moderate hearing loss at the high frequencies in those days. We didn't much pay attention to kids at that point with a little bit of hearing loss at all. I was treated pretty typically.


I don't think I had difficulty hearing in elementary school. I liked music. I actually played classical guitar, when I was probably started playing, when I was about nine, and played quite a long time. I've always been interested in classical music and also popular music. Whatever my friends were into, I was into. My hearing stayed probably pretty much the same, until I was in college. Then, I started doing some things to help myself. I’d probably always sit in the front of the lecture hall. Unconsciously, I was probably lip reading. I didn't realize until much later that I was a pretty good lip reader.


Then I went to college. I went to graduate school, and entered the workforce. It was at that point that I probably started having more trouble and making accommodations for myself. Not wearing hearing aids at that point yet. I had always amplifiers on my phone. I had friends at work who would help me. If I missed things, they would prompt me and people took care of me. My favorite accommodation was when I would be speaking to an audience, a big audience, and people would sometimes be using a mic for questions, sometimes not. I would walk into the audience and people thought I was being very interactive. I was really just making sure I [inaudible 00:06:23] people and hear them. It was a really popular trick that I used to use to make sure that I could take questions.


Time went on. Then in my 30s, I really started to have a lot of difficulty. Started using hearing aids. I had a lot of benefit from them. What I didn't have that, of course, people with hearing loss have today, is email and text messaging. Okay. That was, when I got my cochlear implant, it was 1992. We didn't have any of that in those days. I was really having trouble getting by at that point. It was very, very challenging to be in a high-communication job without any of the technical supports that we have now for people with hearing loss, that often put people with hearing loss on a level playing field with their typically hearing peers. I didn't have that.


It was very soon after the ADA was passed, and before we had in this country began putting into effect a lot of the supports that people with hearing loss began depending upon, I didn't have any of that. It really was hard for me. Fortunately, I had a really wonderful audiologist. Her name was Susan. She did everything possible for me. She brought me along. Fortunately, I had funding to be able to get high-tech hearing aids, and I was wearing the very first digital 8 programmable hearing aids, because we thought that might help me.


At some point, Susan said, “I've done everything I can for you, and you're still not doing very well. I think, you should explore cochlear implants.” That was a very wonderful thing she did for me. She gave me the names of patients to talk to. She was very encouraging. At that point, I had much greater loss, in one ear than the other. I went through an evaluative process with and ENT to make sure there wasn't something else going on. That particular person gave me no support it all on cochlear implants. In fact, they told me that until I was completely deaf, that I wasn't a candidate. Of course, that wasn't true even then.


I went to my primary care doctor, and I said, “Find me someone else to go to.” He did the research. I lived in Washington at the time, and the place he went at that time in the region was Johns Hopkins. He told me the clinic to go to and the surgeon that I should go speak to, and that was Jonah Parker, who many of us who were in the field a long time knew he passed away in 2016. He was just a wonderful physician, a very understanding man and a spectacular surgeon. I had my surgery there. Very quickly, after I came in for my first appointment, it was in mid-October, and my surgery was December 1st. I was activated three weeks later. A week later, I started in my job at what was then called Self-Help for Hard of Hearing People, now called Hearing Loss Association of America. Those two big things and to add to the mix, we were building a house.


[00:09:52] DAKOTAS: It was a busy time.


[00:09:53] DONNAS: Yeah, it was a very busy time. Fortunately, I was lucky to derive benefit from my implant very, very quickly. Then, about a year after I was implanted, the company that used to implant, I was using, actually, improve their speech processing strategies. I got a second sound processor. It was that one that allowed me to use the phone. I hadn’t used the phone in about five years.


[00:10:22] DAKOTAS: Wow.


[00:10:23] DONNAS: That was, you forget. If you've been a phone user, you forget how extraordinary it is to get the phone back, and to have that happen pretty quickly. That was really wonderful for me. I think, one of the things that also really helped me was I had, and we know this to be true now, but people who have shorter duration of deafness, and some residual hearing tend to do better with their cochlear implant. That was definitely the case for me. Now, I've had six sound processors. One surgery that was in 1992 and sound processors. Every time I've upgraded, there has been some improvement in the way I hear, or the convenience, or ability to connect to Bluetooth, like everybody else connects with it now, I can now on the phone, etc.


For people who are waiting for the technology to improve, I always say, “Don't wait. Most of the improvements come in the external device.” That certainly is what I experienced. It really is a life-changing technology for people who are not hearing well. I really had very, very little speech perception at that time. Now, we have realized how much we can help somebody who has had more hearing, more ability to understand speech than I did at the time.


[00:11:57] DAKOTAS: Absolutely.


[00:11:58] DONNAS: It's just an extraordinary technology. I feel very privileged to work in this field and to help more people have access to it. I appreciate, Dakota, you're having me on, so I can give my spiel to a larger community of people who maybe don't realize how beneficial it is, when hearing aids don't work that well anymore for somebody. I have to say, I love hearing aids. I loved my hearing aids. They were wonderful technology. For people who don't have a significant loss as I did, they should be wearing hearing aids and other assistive devices that work with hearing aids. I’m for the whole continuum of care, and whatever someone needs is what they should be using.


[00:12:43] DAKOTAS: Yeah. Thank you so much for sharing that. That's a really, really fascinating journey. All this time, same internal.


[00:12:49] DONNAS: Yeah.


[00:12:50] DAKOTAS: That's so cool. That's so cool. I'd love to hear how you've been through each one of those generations of processors. I bet, it's crazy now to think, looking at whatever your current device is, compared to the first processor. I mean, just the change in size and shape. As you're mentioning too, just sound quality and perception is just really, really cool.


[00:13:10] DONNAS: Yeah, it is. Just the fact, also, that the way we use our devices are more like the way you use the phone. We use a device and we use Bluetooth to connect to the phone. There's a picture of me that appeared in Parade Magazine in 1995. I showed it at a workshop that the FDA had yesterday, actually. It was the size of a little box. I wore it on my waist. Then, when I use the telephone, there was a wire that connected to a little device that plugged into the phone. It was direct connecting to the phone. It wasn’t on coil, it wasn't Bluetooth, it was direct connected to the phone.


You know what? I didn't care. That was what I was doing. That picture that was in Parade, if you remember this magazine that used to be in all the newspapers, it's not really around anymore. They came to my office and took a picture of me with that, showing off my device on the phone. How far we've come with that that now, we use the phone just like everybody else. I think, that's really great.


[00:14:27] DAKOTAS: Yeah. That's such a great reminder of how far we've come with it. Also, our goals have always been the same, which is just improving communication and connecting with others. If you're plugging directly into the phone, or your Bluetoothing to the phone, the goal is the same. That's great. I'm curious, because you were with Consumer Affairs, so you really got some good insight, and especially now with ACIA, some good insight into the more the struggles to even get the device in the first place. I'm curious, if the barriers you encountered in terms of whether it's insurance, or like you mentioned, finding the surgeon, how those compare to what some of the barriers are today, for people who are interested in pursuing a cochlear implant?


[00:15:11] DONNAS: Yeah, that's a good question, Dakota. Certainly, insurance is something that I worked on a lot when I worked for cochlear. At that time, we didn't have the same private insurance that we have now. We say, typically 90% of private insurance covers cochlear implants. There's still some carriers that we have difficulty with Medicare covers. The indications are more stringent under Medicare, and we're working to change that and make them look more like the FDA indications.


Medicaid covers for children in all states, and they cover for adults in about 60% of the state. That was another area that I worked on was trying to get Medicaid coverage to look more like private coverage, to ensure that Medicaid coverage for children was addressing the need for therapy. We often struggle with Medicaid to cover the — I talked about the fact that I've had six sound processors. Medicaid can be really tough about allowing people to upgrade. Some of them have this 10-year rule. Some of them say they won't replace it, unless it's lost, stolen, or broken. That can be really a problem. Some of them don't provide sufficient numbers of batteries for a child.


We see in some states, there was one state I was working in where that was the case. Parents used to actually hoard batteries, so that the child had them to be able to be able to hear at school, and then they would save them, because they didn't have enough for the child to be on all waking hours. Those kinds of problems, I think, are less common now. We worked on that really quite a lot. We still have some insurance issues. We still have, for example, the FDA indications. We had a workshop yesterday with the FDA and those of us that were particularly concerned about access. We're talking a lot about some of the indications.


Mostly for children, the indications now for children are quite different than what they are for adults. For example, for a child who's between the ages of two and 17, that child may have been born with some significant amount of hearing and been able to do well with hearing aids. We do see progressive loss in children and a child who may have been doing well with hearing aids when they were an infant, or a toddler, or even a first, or second grader, there are a number of them become candidates for cochlear implants. Guess what? They have to miss 70% before they're a candidate, when they're between the ages of two and 17. That's a real problem with the FDA criteria right now.


If the family goes to a larger clinic that knows how to negotiate insurance, they'll be okay. If they don't, there's so many wacky stories about things that happen with children that fall in that category. We still have insurance issues now. I’m still working on trying to address those. The biggest barrier is, and this is one of the reasons I'm so thrilled to be on your show, Dakota. The biggest barrier is audiologists and other hearing care professionals don't necessarily refer when they should.


I think a lot of it is, they don't understand the criteria. They don't realize how well the technology works. They keep thinking, “Hmm, if you do this, you're going to lose what you have.” That isn't necessarily the case anymore. We are now able to preserve residual hearing, in a way that wasn't the case when I had mine in 1992. Even if you lose your residual hearing, generally, people gain and do two to three times better than they did before they had a cochlear implant.


The role of the hearing care professional outside of CI is so important to getting people into the system and providing the support that I had from Susan, who said, “No. I think, you could benefit from this.” For my physician, who understood that hearing was part of healthcare. That's really so key, getting people to where they need to be on that continuum.


[00:19:49] DAKOTAS: Yeah. That's a really great point. I love it, because I feel like, when we think barriers, insurance is the first thing to come to mind a lot of the time. You're right that the referrals in the first place, have to come from somewhere. I work with patients who wear cochlear implants, and that's oftentimes what they say. “I'm so frustrated. I waited this long. I didn't know it was going to be like this. It's so much better.” A lot of them still have good relationships with the referring audiologist. Maybe they're bimodal, and that audiologist manages their hearing aid care for the opposite ear. Now that audiologist gets to see, “Oh, wow. You're doing really, really well with this implant.” Then hopefully, that's going to change attitudes as well.


You're so right, the criteria has changed, and we need to be much more cognizant of how much better outcomes can be for these people, especially those who historically are just so borderline. I know that we tend to use the 60/60 rule, the 60 DB, PTA, or 60% word recognition score. It's just a good referral criteria, because not all of those people will qualify and that's okay, because we can try again next year. we can try again if there's a change. They at least, are familiar with the technology, and they're comfortable with the idea. We're going to catch those who really do benefit from this. There's so many of them out there. Yeah, I think that's a really great reminder. I'm glad you're here to talk about it, too.


[00:21:07] DONNAS: Yeah, I love the 60/60 rule, Dakota. I'm really glad that you're using that and that you mentioned it. It's more understandable, because I think, most hearing care professionals don't really know how to do the testing that we do for CI. If you use something like that, that's well within your practice, you're doing that for every patient that comes in, it's close enough for you to know whether you should refer or not. Then, they'll do the full set of testing at the clinic.


My sister just told me that an acquaintance of hers had been referred in for a cochlear implant. It was her audiologist who said, “You're struggling, so I think you should explore this.” She went in to the clinic, and was evaluated. She was thrilled to learn that she was a candidate. It's happening sometimes. It just needs to happen all the time.


[00:22:04] DAKOTAS: Yeah. I think, that's a great segue, too, because I did want to ask you with this journey you've had from a person with hearing loss who’s just navigating it from the ins- I guess, from the outside-in, to now being a professional and a leader in this world, going from the inside-out. I'm curious, what experiences you've had with audiologists. It sounds like, your first one was phenomenal in getting you the support you needed. I'm sure along the way, with different moves and things, you've probably met a lot of clinicians. What have been some of the traits, or whether it's traits, or qualities, or the things that really stick out to you for audiologists, who either work with cochlear implants or don't, that you feel like — because we have a lot of students who listen. For the students out there who are interested in either working with cochlear implant patients, or want to be supportive of that, what are some of the qualities and traits that you really think are important?


[00:22:57] DONNAS: I haven't actually, personally had a lot of audiologists. Because I get someone I really like, and I stay with them, just like Susan was my audiologist for a really long time, until I got a cochlear implant. I stayed in touch with her. I sent her so many patients through the years. I knew how wonderful she was, and they are always grateful to have found her. I think, I'm about to start with my first new CI audiologist next month, because I haven't had a whole bunch.


I think, Dakota, just to try to respond to your question, I think, if someone is really being patient-centered, and really trying to understand where that person is, and regardless of what the solution is, I think, they'll put that person in the right place. I think that, just as is the case in any medical profession, you have people that really listen, and really think outside of the box, and people who just are following the same routine.


My husband had hip replacement surgery a few years ago. His first physical therapist was just doing out-of-the box physical therapy. He was having real bad problems. It went on for a while. I said, “We need to probably try a different PT.” He got to someone who really was very analytical about what was going on and what was going on with it. They had done something that was back during the surgery. It was said, what was hurting him was not his hip, it was his back. Wow. This physical therapist was really thinking about it, listening to him and what was wrong.


It took a couple of weeks, but that PT fixed him. I think, it's the same with any hearing health care professional. You really have to listen to the patient and think outside the box. In the case of Susan, at one point when she suggested that we try the first programmable digital hearing aids, very first. I don't mind mentioning, because it was so long ago. It was Resound. Resound came out with the first digital programmable hearing aids. She said, “You're so hard to fit. Let's try these.” You know what? Her practice wasn't even using them. She referred me to another dispensing audiologist that was, and she went with me to my first appointment with that person to make sure that everything was going smoothly.


[00:26:12] DAKOTAS: Wow. That's dedication. That's good. Yeah.


[00:26:13] DONNAS: Really patient-centered. Really focused on trying to do the very best thing for me. I think, that's true for whether it's audiology, or whatever it is. If we're really thinking about the patient and how we might help them, even if it's something different than we've done before, you'll get down the right path. I really think that's the case.


[00:26:38] DAKOTAS: Yeah, that's great. Thank you for sharing that. I think that is really valuable insight. I love the example of your husband, with the physical therapist as well. I hope that's going to inspire some students out there to really be thinking outside the box, and focusing and listening to what their patients are telling them. That's great advice.


[00:26:54] DONNAS: Exactly.


[00:26:55] DAKOTAS: I had another question for you, before we get to just your sound experience. If there were any other professionals along the way, especially in the early stages, because I know in the 90s, there weren't — this wasn't a very widespread solution yet, right? It was, I think, in the mid-90s, is when it was approved in children. Then from there, it's snowballed upward into the 2000s. Were there any other professionals that you worked with in that time period, or now that you're in more of a leadership role that you're seeing become more a big part of the cochlear implant experience for patients?


[00:27:29] DONNAS: In the old days, when I was implanted, we didn't. For adults, we didn't really think so much about therapy post CI. I remember asking about whether I should have therapy as an adult. In those days, we didn't do it. I was told that my life was my therapy. In fact, I had exposure to sound every waking moment. I guess, that was true. I think, we're much more cognizant now of the fact that adults, at least some adults benefit from some short-term oral rehabilitation. I'm personally very interested in that.


I think that, for example, we could be using group therapy more with adults. We definitely should offer that to adults, at least in the short-term. At our upcoming conference, American Cochlear Implant Alliance has an annual CI conference. We have a rehab cadet forum that we do one day, that's just focused on rehabilitation. In the past, it's always been on children. This time, we're actually doing half the time on children and half the time on adults. We're exploring that topic of short-term rehab for adults.


I also think, adults need help just in understanding how to use their technology. What I really am very appreciative of is all the companies now, the cochlear implant companies, because they know that these clinics are so busy, and that providing support on how to use the phone, or how to use assistive listening devices is not reimbursable. They all have added that component to the services that they provide. Sometimes, there are people with cochlear implants. Sometimes they're audiologists, but they have people that are available, either in person, or they'll do one-on-one sessions that are virtuals with people, but there's a lot more of that support now on how to use the technology, and how to use the technology with other devices that we used to ignore. I think, that's really important.


I saw that a lot that people didn't really know how to use their devices. They didn't know some of the other strategies that they should be using. They absolutely didn't know how to connect their devices to the phone. That would be an issue for a lot of people. That's different, Dakota, that we're looking really at supporting adult recipients, more than we did before. In the case of children, what's really, really changed is the way we provide therapy to children. In the bad, old days, when I first got into this field, when we did therapy for a child, the therapist would take the child into their office, and the parent would be outside in the room, was usually the mother. Then the therapist would come out, and the mom would say, “How did he do?” They would get the input secondhand from the professional about what they did. It wasn't family-centered. 


That has just totally changed. We don't do therapy like that anymore. The therapy that we do for children is really focused on the family, or the guardian, or whoever it is. Sometimes it's a nanny. I mean, whoever’s spending time with the child, and they go to therapy. The therapist is really mentoring, whoever that is, the family member. Whoever it is, in how to help that child develop language, and what they need to be doing as a family to make that all work out.


Now, in all fairness, in the bad, old days, we didn't find children until they were two-and-a-half-years-old. That was the average age when we would find a child with hearing loss, because we weren't screening. Of course, now with newborn hearing screening, we find children when they're days old, and we have rules about how quickly they're supposed to enter the system, and be fit with hearing aids and begin early intervention. So different than what it was like before.


The opportunities for children, the fact that we find them early, we fit them early. We get them into early intervention, and we focus on the family, so that the parents and the family can be the child's first teacher, just like they are with typically hearing children. That's really turned everything on its head, because we now can start all that early and we know where to focus our attention. I love that that change has occurred. It's totally different than it used to be. I think, that's probably the most dramatic change in the field that I have seen since I started working in this field. The most exciting thing, because it just allows parents to really interact with their child in a much more natural way.


[00:33:26] DAKOTAS: Yeah, that's great. That's great. I love that perspective, too. I feel like, we oftentimes forget that these two supports were developing at the same time in the 90s, with cochlear implants becoming available to young children. Then, also developing universal newborn hearing screenings by, I want to say, in the mid to late 90s, those were fully developed. Those things took off together. We're just now, 20 or so years out, starting to see some of those children who were caught early, were eligible for cochlear implants. Now, they're becoming adults and taking on leadership and things like that, too. That's a really great perspective that you've been able to see over its entire development. That's great.


[00:34:06] DONNAS: It is. It's really exciting that all those things happened at the same time. The fact that we initiated newborn hearing screening. I was part of the group that worked on that.


[00:34:15] DAKOTAS: That's amazing.


[00:34:16] DONNAS: If you can believe it, there were pediatricians at that time that were fighting it.


[00:34:21] DAKOTAS: Wow.


[00:34:22] DONNAS: Yeah. They felt that — I’m trying to remember what their rationale was. They felt that if you told a parent early on that their child had hearing loss, or was deaf, that it might affect the way that parent interacted with their child, and that it didn't matter if it waited — if you waited a little while before you started that process. There was a pediatrician in Pennsylvania, I think, that was absolutely opposed to this.


There were even some audiologists, who felt that we didn't need to test all the children. That we should only test the children who are high-risk. For example, for me, because I had identified hearing loss, you would test my child, but you wouldn't necessarily test all children. Of course, that was ridiculous, because most children are born to two typically hearing parents.


[00:35:27] DAKOTAS: Yeah. 90%. Oh, my goodness. That is wild. That's so interesting, you're a part of that movement, too. It's a good thing, you guys and your evidence went out there, because the lives of so many children have been drastically improved, because of that early access that we've been able to achieve. That's great.


[00:35:47] DONNAS: It took off really rapidly, when you think about it. When we passed the newborn hearing screening bill, and it was — I have to I identify Congressman James Walsh from upstate New York. It was his thing. He had a staffer who really led the charge. There were people from all the different hearing health organizations that worked together on the bill, and got that passed. It really didn't take that long before newborn hearing screening really was what we did in every single state. We’re all screening 98% of babies. That's true in all the states.


Personally, I think that's one of the most important milestones that we were able to achieve in the time that I've been working in this field. It's made such a difference for kids, regardless of their level of hearing loss. It was a mild loss, or profound loss, whatever it was. Now, of course, I'm working with mostly, children who have moderate to profound hearing loss. I care about all those kids, and I've worked at all levels throughout my career. Obviously, it's important that we help children, regardless of their level of hearing loss.


[00:37:05] DAKOTAS: Absolutely. Absolutely. Such a cool perspective on that. Okay, I have to get to this question, or my students will be really mad at me, because every time we start talking about cochlear implants, they always ask, and there's only a couple of videos that really describe this. When I have someone who, we're at activation day, they're very excited. Well, technically, we will have been talking about this for the month, or plus that I've been seeing them, but what's it going to sound like on activation day? I tell every patient, it's never going to sound good, or it might sound really weird.


I'll give them, it could sound like Donald Duck, or a robot, or beeps. I list all of the different sounds that I've had patients describe to me what their implant sounded like on activation day. I've got to ask you, on activation day, what did your implant sound like? Then now, compared to today, is it that's gone and it sounds normal? Or how would you describe day one and then that transition?


[00:38:03] DONNAS: Yeah. That's a really common question. It's something parents always ask me. They want to know what their child is experiencing. It's just a really common question. I think, initially, it was soft. They typically start you out soft. I didn't have the robotic Mickey Mouse sounds that some people describe. I think, it's very different for different people. The phenomena that I experienced was it seemed like people were out of sync. I would be looking at you talking, and I would see what your lips were doing, and I was a very good lip reader. I was experiencing something else coming in. That was what I had.


It was still fuzzy. What I really remember is I had to really think about what it was I was hearing. I had to really focus on what I was hearing. I was getting so much more sound than I had been getting before, because I was hearing things all along the spectrum. From mild to — excuse me, from low-frequency to high-frequency, I was hearing all those sounds. That was really different. I knew right away that I was going to have much better hearing. I was actually activated. I was implanted on December 1st. I was activated on December 21st. I came home from Hopkins after a couple of days of reprogramming. My mother came over.


We sat on the couch talking, and she started weeping. I said, “Why are you crying?” She said, “I never thought it would work. I thought it was a bunch of hype. You haven't had any need for me to correct anything since we started talking today. I haven't corrected you, and you haven't asked me to repeat one time.” She didn't believe it. I said, “Well, I gave you that video of these people that had had it.” She goes, “I didn't believe it. I didn’t believe it.”


Right from the beginning, it helped me to lip read more easily. Certainly, I was missing things. Certainly, the quality of the sound was not the way I remembered it to be, but it provided me with so much more information. My husband likes to talk about the fact that he would always have to tap me to alert me that he was going to start talking, so that I would be looking at him when he started to talk. He realized, he didn't have to tap me anymore. He could just start talking, and I would look at him. It did take time. I think, over time, my scores continued to improve. I think, the quality of the sound continued to improve.


After maybe six months or so, people's voices were the way I remembered them to be. People whose voices — One of the things I would always know when I had had a change in my hearing, because people's voices would change. My husband remembers, I used to say, “Your voice sounds different again.” That was because my hearing had changed again. It was changing so rapidly, that I was noting that that was the case. What's more typical for people is that their hearing changes slowly. It goes away and they get used to it. People get used to it.


One of the things I always hear people say is, “I'm doing okay. I'm doing okay. I’m using this, this, this, this.” They have all these accommodations that they're doing but personally, I think that's tiring. I think, what it sounds like in those first weeks differs for different people. I think, that you have to just recognize that over time, it's going to change. One of the things, one of the other things I noticed was I kept comparing the sound to what I remembered sound to be. You have to stop doing that.


You have to use what you have, because it becomes your sound. It's pretty good sound. The fact that I can sit at a table and I could do this early on, because I only have one implant. I don't necessarily have directional sense. The fact that I could tell who was speaking by their voice — There's 12 people around a table, and I know who's talking, because I recognize their voice. I can pick up the phone and know who I'm talking to, because I know their voice.


Parents often say to me, “Will she know my voice? Will she be able to tell an adult from a child? Will she be able to distinguish me from her father?” Yes, yes, yes. She will get all of those things. A lot of it is how long someone does is — how well someone does is dependent, honestly, in how long they've been deaf, and how much residual hearing they have. For children, how quickly we get that implant on them. The faster we get it on them, the faster we start parent-centered therapy, and make sure that the implant is fit properly. In general. This isn't universally the case, but in general, that's associated with better outcomes. It's good form. Go for it.


[00:44:23] DAKOTAS: Yes. I love that reminder. I've had one other patient describe it that way, or he said, “When I finally realized it was never —” He's bimodal, so he's always got an ear to compare things to. He said, “When I finally realized there's no point in comparing it to this ear, because it will never sound the same, it just was so much better. It was so much more helpful for me, once I finally did that.”


[00:44:45] DONNAS: Yeah. It's your sound. It also is the case that music doesn't sound the same. It doesn't. It's still a pleasurable experience to listen to music. I'm more selective about what I listen to. For sure, symphony orchestra doesn't sound like it used to sound. There's too much going on. It becomes noisy. Fewer instruments, music with a strong beat. I could pick out instruments, if there aren’t too many. It helps if I know the music. If it’s music that I had listened to before, absolutely. If I haven't heard a song before, I can't pick out the words in a song. I have to read them first, place them in the song. Then, after I've heard them a few times, then I can place them in the song.


The other thing to think about is music is subjective for everybody. My husband, who you met a little while ago, helping us get the technology set up, he’s tone deaf. It's painful when he sings. This is true.


[00:46:15] DAKOTAS: He's not in the room, right? I guess, he accepts it. He knows. Yeah.


[00:46:20] DONNAS: Yeah. The point is, music is subjective for everybody. It's subjective for typically hearing people. The other thing is, you can improve. You can do training and improve your pitch perception. You can certainly be selective about what you listen to. For me, also, when I go to a concert, or go to a play, or go to something that has music, it's more than just whether the music sounds like it used to be. It's part of an entire experience of being in a place with — not now, but when we go back to go into — being in a place with other people and getting a little more dressed up than we normally are. Just having it be part of an experience. When people worry about not getting music back, that they don't go for it, because they won't have music, it's just not the case. It's different. It definitely is different.


[00:47:34] DAKOTAS: Thank you for that perspective, too. I love how you bring it back to this community moment, too, that it's different. There is something to appreciate, but you still get to enjoy. Whereas, you might not have attended that concert in the first place, because you're worried about your hearing. Now, it might not sound the same, but you at least get to connect into those moments again. I think, that's a really good reminder. Yeah.


[00:47:56] DONNAS: That's exactly right. You also can find venues that work better for you. You can figure out where in a space works best for you. You can figure out what music sounds the best. You don't have to be fanatical about it. I mean, I know in general, what's going to work best for me. That's true for theater as well. I mean, there's a small theater in Washington. It's the Folger Shakespeare Theater. It's a small theater that actually, is modeled after the Globe Theater.


[00:48:37] DAKOTAS: Oh, cool.


[00:48:38] DONNAS: Yeah, that where Shakespeare's plays were put on. It's exactly that size. It has wonderful acoustics. I know just where I want to sit in that theater. It works so well. That's where I like to go. I tell people, you should just try out different venues and see what works best for you.


[00:49:06] DAKOTAS: Sure. That's a great transition, too, because you mentioned finding the right venue. They might have supports, or accessibility options at the venues, and that might work really, really well for you. I'm curious, especially with in 2020, when the way that we daily communicate and have meetings, and everything went more online, I'm curious, so you got to see the transition of assistive technology from when you first had your implant. Maybe there weren't a lot of assistive options to now. I mean, when I see a patient who gets their implant, there are so many accessories and devices to help them connect with their TV, or their phone, or their computer, and each other with a microphone.


I guess, this question could be two things. One is, are there any really interesting insights in that transition of assistive technology that you've seen? I guess, the second part is, since the pandemic, how has accessibility and what that is changed for you personally, whether it's working on the computer, or how you're doing conference calls? I know you are a very, very busy person. What has that change look like for you?


[00:50:16] DONNAS: I'm going to start from the second question, is how things have changed with COVID. Before COVID, we did most of our calls, just were conference calls. This is the straight phone call. I would take those, maybe if it was with my board, there might be 15 people on the line. People sometimes interrupt each other. Some people are clearer than other people. Those sometimes can be pretty challenging for me.


Now, who does a phone call like that anymore? Everybody uses virtual. I mean, even for a short call, sometimes even if it's going to be 10 minutes, “Oh, we’ll do virtual”. For somebody with hearing loss, you get two things. You get your face, which is lovely. I have an insight into you. Then you can turn the captioning on, whether it's Zoom, or whether it's Microsoft Teams, or whatever it is that you're using, you can turn the captioning on. Even beyond that, you can record it, and so you had that captioning script later. You have the whole recording later, if you want.


Honestly, in some ways, the transition that we've made, because of COVID, to using these virtual environments, Zoom and everything else is really very beneficial, I think, for people with hearing loss. We've been able at AC Alliance to have a speaker's bureau, where we have these once a month, we're putting on speaker sessions. They're so easy, and just free, because we already have Zoom technology. You can put it on and people all over the world can watch and their — We just either turn the automatic captions on, or for these, we're using a captioner, or using a card captioners that puts those captions on the screen, if you want. If you want it to be perfect, that's what you do. You can do those things, and we're all doing it so much more. It's so accessible for people everywhere; people with hearing loss everywhere.


I think, it's some ways, Dakota, the pandemic has benefited us in that way. In other ways, the masks. Masks are so awful. If I put a remote microphone on you, I'll be okay. I mean, I'm miss seeing your mouth, but I'll be okay. I never know whether when I'm talking to somebody and they've got a mask on, if I'm going to understand them, or not. I think that plenty of people with typical hearing also have problems with a mask. I think, that aspect of it is very hard for people.


I’m going to a meeting next week. The organizer of the meeting has ordered clear masks for everybody, for me. The clear masks are, of course, not as effective, in terms of ensuring that you're not spreading disease around. They're also not as comfortable with the plastic. The solution’s okay, but it does make us realize that having this affects everybody, it really does. Now, the first question you asked me was?


[00:54:21] DAKOTAS: That was great, but it's how that assistive technology of it now, we’re using tools we never even realized were tools before the pandemic, how more things like, you mentioned using a remote microphone. Just, when you first got your implant back in the 90s, did it come with any accessories, compared to now when it comes with so many? How has that assistive technology aspect of wearing an implant changed?


[00:54:46] DONNAS: That's a good question. When I first got it, I was working at the organization for adults. They used loops, induction loops. My implant processor didn't have a telecoil at that point, but there was an external device that you could buy. I can't say it was sleek. You would plug it into your body-worn processor, and then it had — for it to work properly, it had to be upright. I'd be sitting there, you're holding the microphone, you're trying to take notes. Now, I've got this device that has to be upright. I used to put it inside of a — I would take a glass and insert it. It would sit there inside of it, so that it was in the right position to pick up the induction loop. Isn't that crazy?


Then, as time went on, the CI companies started putting telecoils in their speech processors. It took some times, a couple of generations before that happened. I did use FM systems, always. Back in the day, when I was using hearing aids, FM systems always worked really well for me. If I were talking to you for a period of time, I'd pin a mic on you. Well, I just would routinely do that. I think people are using FM systems less, because they're tending to use Bluetooth.


I think, what also has happened, and this is primarily the ADA that's moved this along, it's a lot of the venues — I'm a theater person. I like going to the Kennedy Center and to the Folger and different things. I want to use assistive technology when I'm in those venues. I try. I mean, I have to say that the maintenance for assistive technology in those kinds of venues is not reliable. They don't have people coming and checking it. Because I hear pretty well with this, and I tend to sit someplace where I'm going to be able to hear. Also, honestly, I tend to go to shows that are going to be captioned. There's a lot more captioning going on.


The Kennedy Center will have a few caption showings for every one of their runs of a show. I can go to that. I understand that soon, the Kennedy Center is actually going to have a technology that you can sit anywhere in the theater and pick up captions on your pad. That's actually becoming very common. That's more of a closed captioning system that somebody views on their seat. I'm not as crazy about it, because it means you're looking down, rather than looking at stage. Versus what they have at the Kennedy Center is when they're doing one of their open caption showings, they have a box on the stage and you sit on one area in the audience, and then you're looking at the stage. If you want to see the captions, you look down and you could see them without looking down all through that.


I think, the assistive technology has gotten more prevalent. I think, we're still probably not where they are in Europe, where there are loops everywhere. In Europe, sometimes you go into a taxi cab and it has an induction loop in the taxi cab. The train station will have one. If you're buying a ticket to go somewhere, not everywhere, but in a lot of places, the train stations will have an induction loop set up. I think, it's advanced. There are some people that don't like Bluetooth. I'm not one of them. I love Bluetooth. I think, the sound quality for me is more reliable than the phone, than the mic.


My landline phone, where I have to rely upon a telecoil, which for me — Not everybody feels this way. This is very personal. I really tell people, “You have to find out what works best for you”. For me, the telecoil does not work as well as Bluetooth. There you have it. I just said it. Some people don't agree with me. That's fine. You have to figure out what works for you.


[01:00:13] DAKOTAS: That's a really great perspective. It's something where I'm still relatively new to the field. I've only been immersed really in the Bluetooth generation of assistive technology. I'm very familiar with loop systems and T-coils. I'm familiar with areas around me. I know when, “Oh, there's a looped area”. It seems like, I have some patients who their loop, they do so well with it. It's something we have to talk about every time. I don't think it's going away anytime soon, because it is that physical, concrete option, versus Bluetooth, which can, if the technology that's emitting it fails, then it fails. I think, there's definitely pros and cons to each and I think, it's an interesting perspective you've got.


[01:00:56] DONNAS: That's true. I'm really talking about the phone when I say that, because you're not going to typically find Bluetooth in a theater. The reality is, though, to find an induction loop in a theater in this country is highly unusual. There are theaters in New York and on Broadway that have it, because the advocates want after the theaters to put them in. I've used them in theaters in Europe. If they're put in well, and are monitored, like your patients tell you, fantastic.


If you go to some of the consumer meetings, and they have topnotch people that are putting the loop systems in, they work beautifully. Unfortunately, it's not the case everywhere. Yeah, it's just variable. Yeah.


[01:01:51] DAKOTAS: It's still so interesting to see how that's changed over time, and just how much more it's probably going to continue to change in the future. You just have such a great perspective on that. I can't believe how fast it's gone by, but we're actually just about out of our time. If you've got any things for ACIA you want to promote, or let people know about. I know you guys have your topic Tuesdays, usually. Let us know about that. Or if people have any questions, where they can find you. It's been such a joy to talk to you.


[01:02:18] DONNAS: Thank you so much. Of course, come to our website. We have a very complete website that's designed for people that are both in and outside of the field. People who are audiologists and are wondering, for example, if they have a patient that should be considered, or if they have a patient that they want to give information to, we have information at all levels. It's acialliance.org is our website. Then, we actually have Facebook and Twitter. We're pretty active on social and also LinkedIn.


Dakota, you mentioned that we have these Tuesday talks in there once a month. The next one coming up is on the 15th of February. It's been given by just an amazing audiologist in the field, Terry Zwolan. She's going to talk about — it's for parents, but it's also for anybody. Any professional that wants to understand what's happening in a mapping session. She's going to explain what's happening in a mapping session for parents. Then we have one in April that Meredith Holcomb, another wonderful audiologist in the field from University of Miami, she's going to do a similar talk, but for adults. We're having those, that are really designed not for people who work in CI, but people who either are outside of CI, or for parents and consumers.


Then, we're doing one — there's a new film that's coming out, called Rally Caps, that I'm giving a plug for, because I just love the film. It's a book that's been around. It's written by a mom of an adult man who has a cochlear implant. She really knows CI. It's a baseball story. It's a really great story. She's coming out with that on opening day of baseball season. We love it, because on her website, she's got information that she has placed up there from our website with links to our site.


We hope to be helping her with some of the places where she's going, various baseball games she's going to show up with her information. We'll have people there and just share information about hearing loss, and generally, cochlear implants more specifically. Watch out for those and join us at one of the baseball games that we'll be at.


I can't stop by not talking about our conference. If any of your listeners out there, students or people who are working in the field, we do have our cochlear implant conference coming up, May 18th through the 21st in Washington, DC. All the information for that is on the site. It's going to be a really great conference. It's in person, for our first in-person conference in three years. Yeah, we'll have safe safety precautions in effect. We hope everybody will want to come for a safe and wonderful conference experience. If you come, I’ll be sure to say — be sure to come and say, listen to me and Dakota’s — I’d be happy to meet you.


[01:06:03] DAKOTAS: Yeah. Well, thank you again for joining me. You guys have so many great things going on with ACI Alliance. We're so excited to have you talk about your journey with your cochlear implant. Thank you so much for taking the time. We look forward to talking with you again in the future.


[01:06:16] DONNAS: Wonderful. Thanks so much, Dakota. Bye-bye.


[END OF INTERVIEW]


[01:06:19] DAKOTAS: That's all for today. Thank you so much for listening, subscribing, and rating. This podcast is part of an audio course offered for continuing education, through SpeechTherapyPD. Check out the website if you'd like to learn more about the CEU opportunities available for this episode, as well as archived episodes. Just head to speechtherapypd.com/ear. That’s speechtherapypd.com/ear.


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