Wisconsin Public Television University Place Waisman Center Day  Panel Discussion Cochlear Implants  June 23, 2012 UP736   cc >> She's been an advocate in Wisconsin for people who are deaf and hard of hearing, and for cochlear implants. A lot of what's happened in the state is thanks to Carol's hard work. You'll hear about her personal experience today. And Chris and Jen, and their two boys, who I met a few years ago as well. Harry, the big brother, and Joe, who has two cochlear implants. They have an incredible story to tell us about their family, and thank you so much for participating today. Thanks, Joe. And Josh, who I think is our newest CI user by far, who is a medical student, and decided to get an implant very recently. You'll hear him speak, he has incredible speech for someone who has not been hearing for decades, and just started to hear again recently. This is incredible. 

And Sharla who is our teenager. Thanks so much for being our incredible teenager today, and Sharla's mom, thank you so much for coming from Rockford today. We're so excited that you're here. I've been meeting with you over lunch. You have such a wonderful story to tell. You'll hear Sharla talk. You know she has an implant, but it's very hard to tell. Thank you to everyone for coming today, we're grateful. Sam Gubbels and I will ask questions either just to the panel or open it up, and we have questions for each of you. Sam, why don't you get started. 

>> One of the first questions we'll start out with is one we can go down the line that hopefully speaks to something very common to any person with a cochlear implant. What is it like when someone asks about your cochlear implant, and do you tell them about it. Start with Sharla, and move that direction. >> Sharla Benson: usually when they ask about it, I'll just tell them how I got it. I had meningitis when I was 3, and I got my cochlear implant when I was 4. I usually tell them, and take it off and show them. And yeah, it's kind of -- yeah. >> Josh Reiher: I do the same thing. I say that I have a really cool gadget on my head that I really enjoy. And I kind of, people are really fascinated, especially knowing my background with medical school and everything. 

I kind of try to -- they're really interested in how it works, so I try to explain it in very, very, very simple terms, as hard as it is to show them and explain to them what it's all about. People are really fascinated. It's really an incredible operation, whether people are techies or not. It's been really more of an educational experience for people, and I think they appreciate that. >> Chris Roy: when Jen and I get asked about Joe, we pretty much do what a lot of them do. You take it off, and show them all the different parts of it. For his classes, when he gets asked a lot. What we've tried to do the last few years is we've come in with some of the audiologists, and do a presentation for the classes on what the cochlear implant is so all the kids in his class know what it is. We let them touch the implants, and give them little coloring books with the story on it. It's helped a lot. 

It's over that initial questions right away. >> Jen Roy: I should also add that we tell people that he -- sort of bionic, he's kind of like a superhero. Yeah. And he's all about that. No, people are pretty fascinated. We tell them it's a device that he uses to hear with and then his personality usually takes over, and explains the rest. >> Carol Burns: I do the same as everyone else. I sometimes take it off and let people feel my bump that I now have because mine are almost 16 years old, so you can feel it more than in the beginning. I take it apart, show them how it works. It's always a delightful experience to educate someone who doesn't know anything about how these devices work. 

>> Harry, did you want to say something? You had something to say earlier about having a brother with a cochlear implant. >> Harrison Roy: well, um, when people usually ask, like, what's on him, then I say they are cochlear implants and he was born with them. Without hearing, I mean. That's all I have to say. >> Ruth: So we wanted to ask everyone to tell us about the quality of sound when you're listening through the cochlear implant. Maybe even in different environments, because it might vary depending which environment you're listening in. >> Sharla Benson: It sounds pretty good and is pretty clear. I can hear well with the cochlear implant. Sometimes when I'm in crowded places, it's hard to hear people, next to you who is talking. With background noise the harder to hear. 

Yeah, it's really clear and good quality. >> Josh Reiher: Again I agree with Sharla. I think that, you know, we have these little remote control devices now with the nucleus which is pretty awesome. It's like an iPhone, iPods, stuff that people know about. And it's helpful to, you know, customize your hearing to different situations. I think for me I had a low frequency, that was all I really had left, and that is really common for a lot of people with hearing loss. I hadn't heard higher, mid-frequency sounds for a long time, probably 25 years. Now it's a big difference for me. When I first got it, though my brain kind of freaked out, and said, what are those sounds, so I focused on the higher frequency sounds. That happened for about, I mean, people sounded like the cartoon characters. 

It was definitely true for me, and really funny. I remember when I got activated my dad sounded like Yosemite Sam. But over time, it seems that your memory kind of takes over, and remembers what you used to hear people sounding like and gradually it evolved to people sounded very much like they did before, but with more clarity. I still struggle a lot with background noise. The irony is you hear more, so you're distracted more. That's the biggest challenge I'm having right now. [inaudible] >> Carol Burns: On my activation day almost 16 years ago, with less technology than we have today, the way I would describe voices as I heard them would be the AOL voice, "You've got mail." and everyone, male and female, sounded the same. That same sound went on for maybe two-three months, and then pretty soon individual voices began to emerge. So people began to sound like I remember them sounding. And just yesterday I was upgraded with the N5 processer with my internal N24. 

It was just the smoothest experience. Everything sounded just wonderful. Much clearer. And it's an amazing experience. >> Ruth: What about going to restaurants or noisy environments? >> Carol Burns: Never one to punish myself. We went out with friends last night in a noisy restaurant. This particular couple, we've been going out with for years and years. And lately she has become quite difficult for me to hear in noise. I just found out that as we get older we do not have as much oomph in our speech. So this is a happening to her, as me. 

Last night we were sitting around the table, and I was hearing the waitress across the way answering to my heard of hearing husband. >> Ruth: Jen and Chris? >> Jen Roy: I think he has the same kind of hearing as he does in a library, which is to say it's just selective. I think it's a little, um, we really aren't sure if he seems to not be responding to us, as we are expecting, then we'll switch his program to another one that is more more capable of dealing with a noisy environment. At this time he hasn't really told us yet. He doesn't really have the language yet to tell us, I'm hearing this or that, or I'm not hearing you. It's a little premature for us. >> Ruth: So there's some simple questions that some of you might have. How many hours a day do you wear your processers, or are there times you just take them off. It must be nice to decide you don't want to hear for a while, right? I've seen kids do that sometimes. Just I'm not going to listen to you for a while. 

Seriously, do you as soon as you wake up put them on, and only take them off when you go to sleep? >> Carol Burns: For me it's evolved. I'm retired, so I have the luxury of not putting them on right away. Back in the days I was working, they'd go on as soon as my hair was dry, and I was on my way to work, and they wouldn't come off until bed time. Now I tend to like my leisure time in the morning, my quiet time, much to the chagrin of my husband who will say, put your ears on.  Sometimes it's nice to be in quiet, and most of the time I wear them. >> Ruth: Sharla? >> Sharla Benson: I usually wear it all day unless I'm going swimming, I take it off for swimming, and when I go to sleep of course. Sometimes when I read a book, I like to have peace and quiet, so I turn off my CI, and have quietness when I read. Other than that, I just leave it on all day, and take it off when I sleep at night. >> Carol Benson: As mother of a teenager, if I have to leave the house, and Sharla is still asleep, I make sure I go up, and say put on your ci. The thought of her being home alone without hearing terrifies me. 

>> Sharla Benson: Sometimes when I have to listen to someone complain, I take it off so I don't have to listen. >> Normal teenager. >> Josh Reiher: As the newbie in this group I try to keep it on as much as I can just to train my brain to really take in all the sounds, and even when it's difficult. So I try to keep it on all day, and I take it off when I sleep. The down side to that is I don't know if any of you have hearing loss. I'm sure some of you do, but I have a sonic boom alarm clock that I really don't enjoy waking up to whatsoever. It's like waking up to an earthquake. That's the downside, but you sleep like a baby. So everything has its ups and downs. >> Chris Roy: For Joe he pretty much, right when he gets in up the morning we put them on him. 

Then at night sometimes he'll fall asleep with them on, and we just take them off. Other time ifs he's really tired, he'll take them off himself. We've gone through periods in time with him where he hasn't wanted to wear them at all. And it wasn't anything caused by the implant or whatever. We went through, I think a period about a summer or two ago of about six weeks he just didn't want his implants on at all. We had to reprogram him, start with low sounds on up. For no reason he just didn't want to wear them, I guess. >> Dr. Gubbels: What about early on with Joe? Was it something to get him to tolerate them being on, and get used to wearing them? I'm sure it took some work getting him used to them. >> Chris Roy: that was a real gradual over quite a period of time. If I remember he would pretty much wear them for about an hour or two, and they'd be turned on really low at first. 

A couple weeks later we'd go back, and they'd turn them up a bit more. We slowly increased it from about an hour a day to two, and slowly increased. It took a 2-3 month period before he'd leave them on. The other problem with him was since he was so young, we had a hard time seeing if they were -- had a hard time seeing if they were on, he couldn't tell us. He implants flashed. We'd turn the program on so if they're flashing, we can tell they're on and working. So that is the opposite of what a lot of implants do, that's the only way he could tell if they were working. Anything else, Jen? >> Dr. Gubbels: The question came up earlier about music. I was wondering if we could, for a minute, talk about how things have gone being able to hear music, and also telephone, another more challenge listening task, how things have gone with using the telephone. That is something in clinic, frequently the question comes about. 

Am I going to be able to use the telephone. So how has it gone using the telephone, what challenges have you had, and also about the ability of being able to use it. >> Carol Burns: in 1996 when I was implanted, the process that I had was a body processer. And we had a direct connect to the telephone from the processer to the phone. So my way of using the phone was the direct connect because back  in that day we didn't have the telecoil. That was a very effective way for me to learn to use the phone. I will have to say that I had to really put myself out there because I think many of new this room that have not had positive experiences with the phone, you have a hesitancy to use the phone because you don't want to mess up, if you will. So I really had to force myself over that to just put myself out there and use the phone. Nowadays there are some wonderful telephone listening programs that you don't have to put yourself out there. You can just dial up, and actually look at the screen on your computer, and be listening on the phone, and see what is being said. 

To me it would be a very comfortable way of getting your confidence back to using the phone. But what I did was I used my hard of hearing coping skills, and I had a cheat list at work of who my usual contacts would be. So I let my calls go to voice mail. Then I'd replay the messages, and return calls based on that. A lot of times bits and pieces drop out, and I was able to put the puzzle back together by look at my cheat sheet. I had a variety of other things like that. That's not to say that when I picked up the phone my heart wasn't go fast, and I was weak-kneed. >> Sharla Benson: I can hear pretty well with the phone. I'm used to it now. I've even got my own cell phone, and it's pretty loud, like the volume. 

But there are some people who are harder to understand. They're quieter, and it make it is hard tore understand on the phone -- harder to understand on the phone, and I put it on speaker. That helps. I guess it's pretty good, the phone. >> Carol Benson: Sharla always takes the phone into another room and closes the door so she is by herself, and there are no background noises. The first time, my mother lives in California, and she called, and Sharla talked to her on the phone, and she cried. It's amazing. Sharla couldn't figure out what the big deal was, but it was a major, major step in her hearing. >> Josh Reiher: Yeah, my hearing got progressively worse and I totally agree with Carol. It became a very nerve-wracking experience to talk on the phone with my hearing aids just because the discrimination of sounds so difficult without reading lips, and over time I relied on lip reading more and more. 

So I could hear my family, but they obviously knew how to speak with me and accommodate me. So that was a lot easier. I still, you know, probably heard, I don't know, I'm guessing, probably overestimating if you ask them, maybe 70% to 50%, I don't know. After a while they totally picked up the cues, like uh-huh. It was clear they weren't asking those types of questions. With the implant I have to say, I've had it for about four months now, and it's a remarkable difference. I'm very confident on the phone. I still have some feedback issues that I'm dealing with, because I put it on the t coil, and some place work better than others. I don't know if it's lines or houses or whatever, cell phone service. So I'm kind of still playing around with it. 

But it's a pretty remarkable transformation because of the clarity. So I still have those nervous feelings right before I talk on the phone, especially important phone calls, you know, with medicine and calling all these fancy doctors and things like that. >> Jen Roy: well Joe doesn't have too much phone experience yet, but I feel sorry for the telemarketers who call and he picks up the phone. Yeah, he's pretty handy to have around. No, it's really neat though to be able to hand the phone over to Joe and have him, you know, speak to Grandma and Grandpa, and actually have a two-way conversation. It means they can understand him. He doesn't have any use of any visual cues or anything. He's just hearing what they're saying. To go from being, you know, born totally deaf to having a conversation on the phone at 5 is pretty neat. >> Carol Burns: One thing, yesterday when I was activated with the N5, never having used the phone with it, I was leaving Jennifer's office, and my mother happened to call, because I was supposed to have been meeting with her by this time. 

I picked the phone up and I talked to her, and it was like, you know, anyone else would pick up the phone. I didn't use the T coil, and without changing a setting at all. So I was just tickled pink. What really is amazing, before I was using my implant I was using the TTY, what a long road that has been. It's a miracle. >> Ruth: Thank you. So one of the things that you have all, in some way or another, either brought up or alluded to is about confidence, functioning in the mainstream environments. And the phone is one example of how you've gained some confidence or a lot of confidence, and transitioned from having more stressful situations to less. And are there other examples where you feel the quality of life has changed or there's been a change in confidence in certain situations? And I think this is something that everyone here might have thoughts about. >> Carol Burns: For me the biggest transformation was being able to travel in the car at night and carry on a conversation, either from the front seat or the back seat with other people in the car. 

When I think of my family, with my children when they were young, and we would travel back and forth to Rockford to see the family, as soon as it was dark, I couldn't have a conversation in the car, and I felt so cut off from the family. >> Carol Benson: When Sharla lost her hearing there's a lot of grief that goes with it, and one of them is, she'll never be able to play the piano. I have to say now she plays the piano beautifully. In tune and in key, and just does a beautiful job. I think her confidence there, she does recitals, and it's amazing. >> Josh Reiher: Before I talk about kind of related to confidence, music I think is a big question for a lot of people. It was a big one for me. I love music, and even before, you know, with my hearing aids. But the challenge was understanding the words that were being said. We'd have to sit and read the transcripts, and try to follow along with the sounds. 

But it's still a big challenge to be able to pick up voices in music because there's so much going on. So that's definitely one of the things -- it's only been four months, but it's not worked out as well as I hoped. However I do hear more of the instruments, which is great. So little bit more confidence with the music thing. So in terms of quality of life, absolutely. In medical school it's very, very difficult for anybody as it is, but for me it was really exhausting concentrating, and trying to hear what everyone was saying. I had sign language interpreters with me had the clinics and hospitals. I was the guy in the hospital with the posse, it was kind of funny, everybody knew who I was, which is good and bad. Having said that, I just started rotations back up again four weeks ago, and there's definitely a noticeable difference in feeling confident and in group discussions a little bit more, as well as not being exhausted all the time. And I think that the biggest significant contributor to decreased quality of life in medical school where you're exhausted after working long hours and you want to go out for dinner with friends or there's a gathering of some kind, and that became a burden. 

It became more of an effort on top of an already exhausting day to do that. So I became a little bit more isolated. So now with the implant it's a lot better because it's much more improved, because I feel a lot more confident just having the energy, number one, and also being able to kind of relax a little bit more, and not feel stressed out as much in social situations and larger groups. But it's still, again, a work in progress. It's not a cure by any means, but it's definitely improved. >> Carol Burns: I just have one thing, at the age of 51 I was looking at a disability retirement. Because I was having some issues at work that were just insurmountable. And it's just unbelievable. I changed jobs in order to maintain employment. Between my surgery and the activation of my cochlear implant in '96. 

And one year later, after being very bored in a job that was just no interaction with people because there was the communication issue, asking to take on extra jobs, one year later I promoted three levels in a career that was in accounting. I didn't get any smarter, it was just that I was able to use the phone, and go out and do trainings. So life changing. >> Jen Roy: It's hard to speak for Joe, what he got more confident in. But I know his parents. Obviously we were more confident in his safety. Big, big part of playing out in the yard as kids do. We live on a corner, so we have traffic coming from both ways. I think we were especially glad to have both of those implants so that he can really vocalize sound, tell where cars are coming from, and all that. Peace of mind maybe more so than confidence, but we got a lot of confidence there. 

He sings at school. He does singing, and he does some dancing, so we're pretty grateful that he's able to do those things because of his implants. And Harrison, his brother has something to add. >> Harrison Roy: Also with having two implants, it's pretty nice to have them, because if one -- like if he has two he can hear from one side in two directions. >> Ruth: You should be a researcher. >> Dr. Gubbels: So I wanted to ask a question. In clinic when we're seeing a patient for a cochlear implant evaluation, and when I spoke of the steps earlier with the medical, and after having the radiologic evaluation, and determining that someone is a candidate, there's often a period, a sense of stress as far as making the actual decision to have the cochlear implant. Sometimes there's still residual hearing, and you're getting by on it. You're a candidate, so that is not the obstacle anymore, the question is should I go ahead with it, and this applies to one implant as well as two. I'd like to ask if any of you would like to speak to making that decision to go ahead, and  how it helped, and the decisions you encountered, and how you feel about it now. 

>> Carol Burns: If I could say one thing, my only regret is that I held back as long as I did. You need to understand that I'm talking about a period of time that is much more primitive in the technology than what we have today. I got on board when the N24 was in clinical trials. At that point in time there was very little data to say how well people did, you know, what was the success rate, and so on and so forth. But I was at a HLAA convention in Dallas, and one of the top ear surgeons was giving a presentation. The questions I had was, what is the failure rate? If failure, can you be re-implanted, and how much are people being helped? 1% failure rate, yes, we can implant successfully. I forget the last one, but all my questions were answered. So I came home, and it was, I couldn't do it soon enough. But prior to that, family was pushing me. Why don't you want to do this. 

Because I was just a little bit reluctant. And I'm saying this for the people who are on the cusp right now. Even though you have hearing that isn't very good, it's barely usable, it's the hearing that you know. And it's a very difficult thing to ask somebody to consider taking this leap of faith where you do not know exactly what the outcome is going to be. You can say, yeah, it's going to be better, probably will be better, can't guarantee it. So, you know, it's a real struggle within to say okay, am I going to do it? And usually it's just something that the individual has to come to on their own. My life is hard enough right now. I can't do it anymore, I'm ready, and you just kind of surrender, and take faith that this is going to work. >> Chris Roy: From our point, the first one is easy to decide. We found out right away at birth that Joe had no hearing, and three months later they did the test, and they said he didn't. 

That one was fairly easy to do. For us, our thoughts were that we would give him the first implant, and when he's old enough decide himself if he wanted to live in the hearing or deaf world, that is his choice, but we'd give him that option that he could do either. That's why we did the thirst one. The second one was a harder decision. We did that one a year later. I came to the conclusion that I'd prefer to have the second one before my wife, Jen, did. We met with Ruth here for a couple hours at one point, and she just went through the positives and negatives of going each way. But it took Jen and I a long time. I got the approval for the second one before she said yes. So she wasn't happy with me on that. 

>> Dr. Gubbels: Sorry to interrupt, but just to continue that, what was the trepidation of going to two. Between the two of you, what were the main things you were considering that you thought you wanted to wait, and why I hesitated more than your husband? >> Jen Roy: Well I guess because you're taking that residual hearing, and you're deciding to say, you know, we're going to forget that route and we're going to destroy that anatomy in there to even make it possible to hear with future technology. So the idea of just doing something so irreversible was, oh, my gosh, what do we do? He's got hearing on one side, we're good to go there. So it was very stressful. But I think we thought, after learning about the milestones that he would pass that can't be reached again, the fact that the -- the plasticity, the brain that doesn't get any better when you put more and more years between the first and second surgery. Kind of outweighed all those other facts. So after long and hard thinking, we decided to do that second one. >> Carol Benson: In deciding to implant Sharla it was kind of the same as with Carol. Well, we've known deaf people, they've lived in the world, they survived. We thought Sharla will be fine. 

We had decided pretty much not to implant her. Brain surgery scared me, and you're not getting any guarantees. I wasn't sure I wanted to go that route for her, and if it was the best for her. We just happened to stumble on that movie Sound and Fury. I'm sure most of you have seen that. It's about a family deciding whether to implant their hearing impaired daughter. They decided not to. Well one family did, and another didn't. I thought why implant her? And then, wait a minute, that's us, that's our story. That was the turning point for me. 

And on top of that, in the school she was in, there was a little boy implanted, and just in a few short weeks after he was turned on he was responding to sound, and that so amazed me to go from profound hearing loss to responding to sound, it was just a major turning point for us to make that decision to go through with it. And we have no regrets. None at all. I would have regretted not doing it. I was very worried because she was 3, 4, and I was very worried about her speech development, her learning. Everything so concerned me, and to see her excel the way she's excelled, I would never go back. >> Josh Reiher: Yeah, I was thinking -- I'm not a parent, and I was thinking about that, the that have to go into making that decision, so many factors involved on that journey. It's challenging too with deaf culture and wanting what is best for your child, and then there's, how do you make the right decision. And my family, I lost my hearing -- I'm similar to Sharla, I lost my hearing when I was about 3 1/2. I had hearing, and I had gone through that developmental window with speech and all those critical periods. 

So we kind of, with the hearing aids, my hearing was good enough at that time, and I was a happy child, I had a happy childhood. So really the implant wasn't really on our radar for very long until I was in my 20s, and life started happening. And there was career decisions to be made, and stuff like that. I went to a big ten school, it's hard for anybody to go to college, let alone at a large university. But I think, you know, like Carol said, you just get used to it, it's all you know. If you're doing well, if you think you're doing well it's easy to stay in that bubble. If you feel that you yourself are being successful, and you're achieving your goals in life, and that's okay. Carry on about your business who you are. For me the decision became very readily apparent that I was reaching a crossroad when my hearing started deteriorating again. My first and second year of medical school it was becoming more and more difficult. 

I don't know if that is stress related or what. I'm sure that had something to do with it, about which is a very interesting research study, I think, by the way. You know, back in the day medical students used to pay off their loans being Guinea pigs in the labs, as I recall, being research subjects. But they don't do that so much anymore. Anyways, my career goals were very important in the decision to get the implants. It's very scary to think about, you know, the side effects, things that can go wrong in surgery. It's 1%, but it's still 1%. That 1% keeping plague around in your head. It's 1 in 100, and how many of these are done in a year. everything worked out very well for me. 

I was lucky. That's not the case for everyone, but for my experience it was definitely the right decision to make. You always have that, when is technology going to develop. The research, in the lab, and there's very exciting developments in science, very difficult to keep up with it. But I was ready, I reached a tipping point, and I finally decided to muster up the courage to get it. For being a physician it's going to be very important. That made it an easier decision for me than I thought it would be at that moment. >> Carol Burns: I would like to add one other thing. What Josh was saying about technology changing. It's like when you buy a computer, you buy a new car. 

The minute you buy it it's now old technology. One of the things that I am so eternally grateful for is the fact that the cochlear implant manufacturers have chosen to make their external devices backwards compatible for those of us that were left behind from the mid 930s. I'm wearing the most current processer, and this is the fourth upgrade in almost 16 years. And with every upgrade, there's been, in my own estimation, an improvement in what I hear, the quality of what I hear. I just quantitied to add that. If anyone has fear of getting old technology or waiting for the newest, that's the point I'm trying to make. Not to be fearful of it. >> Ruth: It's consistent with what Diane Heatley was saying this morning, about the fact that the actual electrodes haven't changed that much. That is comforting in a way because most of the advances are being made in the external advances. However, there's that leap you take in putting the device in in the first place, and taking up that space in the cochlea, and think about what that means for future treatments, and whether or not we can integrate genetic and stem cell with the cochlear implants, I which is one of the directions the field is going in. 

I have a very important question for Harry and Joe. Because people wanted to know, what are your favorite TV shows? Do you watch TV? >> Joseph Roy: I watch [ indistinguishable] and anyone come to our house. [Indistinguishable] and my mom and dad go and I go to grandma and grandpa's house. >> Ruth: Thank you, Joe. Excellent. Harry, do you want to add something? >> Harrison Roy: Um. Like, so what? The when Joe got home, I thought we could control him. >> Jen Roy: When we upgraded from the nucleus, the freedom to the N5, N5 comes with the neat iPod look controller/remote. And Harry says, you mean, we can control Joe now? >> Ruth: We're going to go back a little bit in your history, Chris and Jen, and Carol, and just ask a little bit about what might have been the most, perhaps challenge aspect of finding out that your child was deaf in the first place, that you have congenital onset deafness, and we have meningitic, so we have two different experiences. If you wanted to share with us now, that would be great. 

>> Carol Benson: How much time do we have? You know, like I said, it was very heart breaking, because I had known deaf people, but I had never experienced it firsthand like this. It is like a death almost. We watched Sharla's speech, who at 3 1/2 was very articulate. He was speaking all the time, and reciting poems, and loved being read to, and all of a sudden it was gone. Sure, she still spoke, but it was rapidly declining, and to watch her speech decline. We were trying to keep on top of it with speech therapy. It was pointless, really. We were trying to save her speech, and we couldn't really save it. It wasn't until after her processer turned on, and she started hearing again that her speech began to return. I was very worried, I know that people are educated, you know, the hearing impaired with educated, but to see firsthand how difficult it is to learn vocabulary words and to advance higher level, and you know, you just it was very scary. 

It was very scary for us. And plus all the safety issues. We had just moved into a house next door to a pool. So I was terrified. I don't think I hardly ever slept that year because I was always wondering where was Sharla, br was she. I had to keep my eye on her constantly, even though the pool had a gate. It was terrifying. Like traffic, and we just couldn't take our eyes off of her, and going into public. If it's disruptive because she couldn't communicate very well, and there were disruptive  issues, and trying to learn sign language. It was very traumatic. 

I forget where I was going with that. But it was it was tough. >> Jen Roy: We agree completely. Deafness is not something that runs in either of our families. We were very scared. In shock, almost. We both can remember the day that we got that diagnosis. It was probably one of the worst, at that time, we can say it was one of the worst days of our lives, really. And so many questions, so many unknowns. You felt like you were just all alone going through this. 

We really had a lot of community support from organizations that really contacted us right away, and kind of took us in and guided us through a lot. So that helped tremendously. And boy, an experience we had that day that we found out, we went to lunch. We went to a very noisy restaurant. And Joe was a baby, obviously, so he was in his carrier. And the waitress said, boy, your baby can sure sleep through this, you know, this is really loud. Our hearts just kind of sank right then and there because we had just found out. And we didn't want to hear that. The real reason he's not waking up because he can't hear anything. So that was that was extremely difficult. 

But I think we've seen how many advances he's made today with all the help that he's had. And I think we can honestly say he wouldn't really be Joe without having these implants, having his hearing loss, and it's really part of who he is. He wouldn't be Joe if he didn't have that. It was very difficult, but it's been a tough journey. I think we're smoothly sailing now. >> Chris Roy: Like Josh said earlier, it was one of those things that between Jen and I, each of us had a different time frame that it took us to learn to accept and to be just to move on to the next step from that time. Once we got to that appoint, then we could decide what we wanted to do with it, to get the implant. The hardest part was getting over the stress. As Jen alluded to, there was an organization where a family came out who had already gone through the experience. They sat with us, and answered all the questions we had. 

It was very helpful at the time, and that helped us get through it, and just Jen and I, it just took us I got over it quicker than she did, and she took a while to get over it, so that was just hard on both of us in our own way. >> Carol Benson: I wanted to mention the social also. Sharla was just coming into making friendses, and wanted to be with her friends. All of a sudden her friends would come over, and get angry because she wouldn't respond to them, or they always had to do what she wanted to do because she didn't understand what they wanted to do. I saw this loss of friendship and interaction. So that's been a great thing to see her have friends, and want to be with her friends. We relish every time that happens. We really appreciate that. >> Ruth: Sharla, do you remember losing your hearing and having any feelings about it back then or were you too young to remember. >> Sharla Benson: I just remember bits and pieces. 

I don't really remember much. >> Ruth: Yeah, that is very interesting. I think the adults who have had progressive hearing loss, I mean, you have memories, I've heard you tell interesting stories. >> Carol Burns: I can remember in 1950 getting my first hearing aid. >> Ruth: How big was it? >> Carol Burns: About that big, and that wide, and about this thick. It took three batteries, and I had a great big button that was in my ear with a long cord. Then my mother had to make me a little thing on my waist to keep the receiver far away from the body. But what I remember most about it is that I was hearing things I'd never heard before, very similar to my cochlear implant turnon. For example, never heard the car motor, birds in the trees. So I had a period between the ages of 5 and 10 where I had good aided hearing, and then it went down. 

>> Ruth: I love hearing stories about things that make sound that people who get implants didn't realize made sound, right? >> Carol Burns: Yeah. >> Ruth: Like water coming out of the faucet. >> Carol Burns: My husband turning a newspaper. >> Ruth: I wanted to turn our attention to real world environments, like classrooms. At the end of the day, a lot of the time we spend, we talked about restaurants. But and Josh really talked about being mainstreamed at a big ten school, and I know you were a very good soccer player. You have to contend on the soccer field, and of course in med school. For Sharla and for Joe, we have slightly different experiences, with going to high school, and going to kindergarten, and contending in the classroom environments. I was interested in your thoughts about functioning and learning and listening in those environments, and also whether FM systems would be something you think might be helpful, whether you tried them. >> Sharla Benson: I don't really remember much about the FM system. 

I tried to once in kindergarten. I can't remember using it during classes, but I do remember the testing, when the teacher put it on my cochlear implant, and she'd go out of the room, and talk on the mic, and see how it worked. It did work well, I could hear her voice. It almost sounded like talking through a telephone. But that's all I remember from the FM system. Yeah. >> Ruth: Jen? >> Jen Roy: Joe has had a lot of success with the FM system. His teachers reported immediately that he was focused in on them, whether they were in front of him or behind him. They were pretty sensitive. There's one funny story, his teacher was in another room talking to another teacher, and had left the FM system on. 

His teacher asked the other one a question. It was obviously a yes or no question, and Joe answered the question from the other room. So he does pretty well. I think there are some limitations in the gym areas where the, just natural acoustics are different. But yeah, he's had some good success with those. >> Chris Roy: Then for Joe, I know also, at school, it's pretty good because he tells them if it's off or he notifies them if things aren't right. He pretty much tells them every time. So it's helpful, because he knows when it's not working, so he lets them know that, so they can rectify the situation, and is it works. So he's able to pay attention a lot better. >> Ruth: Joe, did you want to tell us something? >> Joseph Roy: Yeah. 

[indistinguishable] the potty? >> Ruth: Thanks. We have time for just a couple of questions that came in from the audience, and one of the questions was from the parent of a 12 month old who has just been implanted. One of the questions is about resources in terms of books and speech therapy. And where do you feel you found the most valuable or helpful resources, and maybe at the end you can write down some of the Web sites for us, and we can pass them along. What do you think was the most helpful place to turn to for information, help, resources, advice? >> Chris Roy: One of the places for us, at that age, was birth to 3 was one of the organizations. They came out and really worked with Joe a lot. But they also got news touch with other places as well. Through the audiologist we came and did speech therapy here at the Waisman Center through Ann who was helpful to Joe, and worked with him. Harry actually got to help him at times too, so he was there. The other one, some of the stuff for education wise, I think Jen and I did some of the courses through the John Tracy institute out in California is the other one as well. 

>> Carol Benson: And the public schools, you know, hands down on the public school system, when it came to hearing impaired, they were great. And the teachers in the program, they've seen it all, all the different hearing devices, and they were very, very helpful. I think for me the biggest was just talking to people who had it. And the biggest question is, what's it sound like? I don't want her to hear Mickey Mouse or Donald duck sounds. I remember talking to one boy who was, I think, 13 when he was implanted, and he said at first it did sound kind of like Mickey Mouse, but then when his brain began to process it, everybody sounded normal. That was reassuring for me, I really needed to hear that. But talking to me, that is really helped me, who had gone through it. >> Dr. Gubbels: So there's one more question. Does static electricity in the winter when a person gets shocks deprogram the implant? >> Yes, and for Joe that happened, once or twice was about it. We just went in and got it reprogrammed. 

Jen is pretty good now about making sure when she buys hats, and stuff like that in the winter, she buys the non-static hat, so he can still wear his hat and not have to worry about getting a shock. He goes down the slides and all that stuff, and he doesn't really worry about getting shocked. He's a normal, active boy, so we really don't worry about it too much. If we would, we probably wouldn't let him have as much fun as he does. >> There's talk with the bouncy house and the plastic balls, and that's a source of a lot of static. Have you found that? Has there been any incidents for deprogramming the implant from that circumstance? >> No, actually we take them off when he goes in there, because we're more worried about him losing them and falling off. But the other thing, balloons for sure. Kids like to take them, and run them on their heads. Balloons are kind of a bad thing, but I don't think there's anything else. Yeah, no fleece hats. 

[laughs] That's what I say. I thought I was going to say something, but I guess that's it.  >> Well, we have a few extra minutes, but what I thought we could do is, I'm going to make a couple of announcements. And then we can break up, and let people informally, maybe, approach our panelists, and maybe ask a few individual questions. And we'll be here as well. Thank you, you have been incredible. Thank you so much for being on our panel today. [applause]