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h360 LIVE: Katherine Bouton from the HLAA
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h360 LIVE: Katherine Bouton from the HLAA

(DAVE)
Well good afternoon and welcome to h360 LIVE. My name is Dave Duplay, I’m joined here in the studio by my friend and colleague from healtheo360- Ms. Courtland Long. Courtland it’s so good to see you today.

(COURTLAND)
Good to see you Dave. How are you?

(DAVE)
I’m doing great. Well, Courtland we’re going to be on a plane tomorrow heading out to California to the American Society of Hematology where we’re gonna hear a lot of interesting data and research being presented on the fight against cancer. I can’t wait to get out there. We’re going to see some of our old friends, we’re going to make some new friends, we’re going to be posting some videos out there. So you want to stay tuned for that. But I really can’t wait to get out there and hear all this new scientific research.

(COURTLAND)
It’s going to be a really fantastic conference. We have a ton of awesome interviews lined up, and I’m happy to get them out in our community.

(DAVE)
Absolutely. Well, we have an exciting show for you today. Katherine Bouton from the Hearing Loss Association of America- the New York City chapter, where she is the president, is going to be joining us. And, I got to tell you this organization is doing some fantastic work. We ran into Katherine the first time over the summer where we attended one of her walks. We were so impressed, and I’m so glad to have you here today so thanks for joining us. Your organization is great and we’ve got to get the word out and talk all about it today.

(KATHERINE)
Thank you so much. It’s great to have an opportunity to talk about hearing loss because it is often referred to as a silent epidemic. And it is an epidemic, there’s 48 million people in this country with hearing loss of some degree or another- which is 20% of the population. And it’s 20% of almost every age group. We tend to think of hearing loss as being a condition of the elderly, and so we kind of dismiss it as a natural part of aging, and we don’t like to admit it. But, more than half the people in the United States with hearing loss are under the age of 60. It’s progressively worse for most people as they get older, which is where that perception comes from. But, because there’s still a stigma attached to hearing loss people really don’t want to talk about it so they don’t know what the resources are, they don’t know where to go for- people don’t even really know where to go for a hearing test, where to go for hearing aids. So, our organization helps provide that information, and we also through our monthly chapter meetings try to provide education. We have guest speakers. And also just support. All of us being together is very mutually supportive. And it’s also personally educational because we trade tricks and we talk about the different devices we’re using. It’s a great way to learn more about how to live well with hearing loss.

(DAVE)
Those numbers are big. I didn’t realize there were so many people with some degree of hearing loss. And you’re saying it’s about 20% of the population?

(KATHERINE)
Yes.

(DAVE)
And the age ranges from young to older. So it’s an equal opportunity situation here, if you want to put it that way.

(KATHERINE)
It is. Actually 20% of teenagers have some degree of hearing loss, which is not surprising actually if you think about the way teenagers abuse their hearing. But, most younger people, unless their hearing loss is pretty debilitating, tend to simply ignore it. And I did that myself. I first lost my hearing in one ear almost completely when I was 30. I had good hearing in the other ear. I didn’t know anybody with hearing loss. Hearing aids in those days were big, clunky things instead of the really sleek, invisible things that are available today. And I went for 20 years without getting hearing aids, without knowing anyone else with hearing loss. It progressed, and it progressed to my other ear as well so eventually I couldn’t keep up that charade anymore.

(COURTLAND)
Going back into a little bit of your life and background, did you have some sort of traumatic event that happened where you lost your hearing, or was it kind of gradual over time?

(KATHERINE)
It was very sudden, and it was completely without warning, unexpected. I was a freelance writer then. I was working at home in my apartment. I did phone interviews, and my phone was ringing. I picked up my phone with my left hand because then I could take notes with my right, and when I said “hello” I couldn’t hear anything- which was kind of shocking. In those days you could call for the time, and the weather to get these recordings. So after I first switched ears and realized I could hear out of this ear, I spent the rest of the day trying to figure out if I really couldn’t hear. I also started to feel at that point sick- dizzy, nauseated, very very hyper sensitive to sound. If I dropped anything on the floor, like a hair brush, it was like a clatter that was deafening. So I did go to a doctor, which is very important to do with that kind of sudden, single-sided hearing loss. He put me through all the regular tests- I had an MRI, I was tested for all sorts of other immune diseases, and they never found a cause for hearing loss, which is not unusual.


(DAVE)
You know, you hit on something I want to probe on just a bit. You said it’s not surprising about the younger population having hearing loss. I have to say, I get in an elevator in New York and I see these people with these headphones on or these little things in their ears listening to music and I can hear. I could be standing five feet away and hear that music plain as day, every word for word on that album. And I have to wonder what that is doing to them with the little ear buds stuck in their ear. It’s got to be so damaging.

(KATHERINE)
It’s actually destroying the hair cells in their ear that allow them to hear. The other thing is that once some of the hair cells are destroyed, which means they may lose different frequencies, part of their hearing. But, scientists have now realized that that kind of noise exposure also undermines the structure of the hair cells so that they are much more vulnerable to noise exposure and other kinds of things later. So when you begin to get older, the hearing loss has an easier path because those hair cells have already been undermined. Literally undermined- it happens at the base. The over-the-ear headphones are not as bad as the ear buds. The ear buds are the worst- they go directly into the ear. And, of course, for I’d say at least a decade everybody wore ear buds. These new over-the-ear earphones are I think a relatively new phenomenon, the past 3 or 4 years maybe. They may not be doing quite as much harm. But if you can hear it from five feet away, I can guarantee you it’s too loud. But the other thing is that it’s not just the ear buds and the headphones, it’s also things like sports events which are unbelievably loud. The Seattle Mariners stadium, I think is where it was, registered a peak sound level of 127 decibels at one of their games. That was the peak, the rest of it was down around 120 decibels, but that’s like having a jet plane go overhead for three straight hours.

(DAVE)
I’m from Cleveland and I used to go to the Browns games. They don’t do so well, so there’s not a lot of noise going on. So I think I’m pretty safe in that regard. But you’re right. I travel quite a bit now with Courtland, and we go to a lot of conferences…

(KATHERINE)
Is Autzen Stadium in Cleveland?

(DAVE)
I don’t know what they call it now, but the Browns Stadium, right.

(KATHERINE)
For a long time that had the record of being the loudest stadium in the country.

(DAVE)
Well those crazy guys over in Cleveland, you know. But I see a lot of people traveling with these noise-canceling headphones on. You’re on a plane, and you’re kind of in a little tube basically, and the noise of the engines and that constant humming. Do you think those are protective devices to wear when you’re traveling?

(KATHERINE)
Oh, definitely. Sometimes you’ve got music blaring through them. But, if they’re just protecting you from the airplane noise, sure. Because they’re noise-canceling you can hear at a lower volume so I think they’re probably not harming people’s hearing.

(COURTLAND)
Well, Katherine, when you were younger did you work with your doctor at all to sort of make a treatment plan or adjust to any obstacles, learn a new life basically?

(KATHERINE)
I’m sorry to say I did not. I walked out of that doctor’s office, I had young children, I was working, I heard quite well with one ear. If I was sitting next to someone at a dinner party who was on my bad ear I would make a joke of it- “I’m sorry, I can’t hear you.” One time, years ago, I happened to sit next to Robert Morgenthau, the former district attorney who I was very intimidated by- he was a very very important man. But, anyway, it turned out he couldn’t hear in one ear either so the two of us were sort of leaning around. It really broke the ice, it was good. I just was too busy, and I could hear, and I also just couldn’t believe that I was hearing as badly as I was. When your hearing starts to go you just don’t recognize it. I could tell I couldn’t hear on the telephone, but I actually couldn’t tell so much when I was talking to somebody face-to-face. The other thing is I think from that period of time I’m a very good lip-reader because I’ve always paid attention. So that served me as my hearing got worse and worse. I don’t recommend this. First of all, you should definitely get your hearing checked if you have those…they’re called the red flag conditions- by an ENT. You shouldn’t, you know, toss it off as a cold. It’s a serious condition, and it can be reversed but it has to treated right away. So I did that part right. It would have been much better for me if I had gotten a hearing aid then. Because by the time I was able to correct the hearing in that ear, by the time I got a hearing aid, I had lost that hearing 20 years before. Essentially you hear with your brain. And so my brain had the speech pathways taken away by other senses. I just didn’t have those speech pathways anymore. So this hearing in my left ear has never been particularly correctable, I have a cochlear implant here now which I love- I wear it all the time. But, it’s hard for me to hear in this ear even with that really sophisticated technology. I always advise people to treat their hearing loss.

(COURTLAND)
What made you decide to make the switch, to go and actually get a cochlear implant?

(KATHERINE)
I got the cochlear implant in 2009. In 2008 I changed jobs. I worked at the New York Times for two decades. I went from a job I had done for years, I was deputy editor of the magazine, and went to what I thought would be a fun, challenging job- which was an unbelievably challenging job as the books and theater editor in the daily paper. It was very stressful. I also had a lot of personal stresses in my life- my parents were dying. And I think stress very often affects hearing. I basically had a hearing breakdown at that point. My doctor, who by that time I had seen fairly regularly, did a few last ditch efforts to restore that hearing. But, finally we decided that I should get a cochlear implant. I was not eligible for a cochlear implant even though I would have been now. The FDA has eased the eligibility requirements. Because I had about 50% of the hearing in this (right side) ear, 50 decibel hearing loss, back in the early part of the 2000s- 2004 or 5- when I was pretty seriously impaired, I was not eligible for a cochlear implant because I had the hearing in the other ear. Now they have changed that policy, which is good.

(DAVE)
So Katherine, I was wondering, you know like other parts of the body- you know like if a person’s right-handed. I write with my right hand, so find myself, if I have to open a jar I’ll use my right hand. It’s a dominant hand, it’s a little stronger. Same way with my legs, if I’m playing kickball with the kids, I’ll kick with my right leg. Is the ear that way? I’m interested, you said you noticed loss in your left ear first. Is there a dominant ear and more of a passive?

(KATHERINE)
I don’t think so. I mean, really you should hear perfectly in both ears. The brain works differently though. There is a lot of cross-pollination in the brain. But, in general the ability to understand words is in the...I forget whether it’s the left brain or the right brain. And the ability to solve problems and configure information and synthesize it is more of a right brain problem. So, I think I was actually lucky to have the right ear remain dominant because it did keep me able to distinguish words for a much longer time than I probably would have. I hope I haven’t gotten that completely wrong. I’m not a neuroscientist unfortunately. But I know that once you lose the hearing in one ear, the other ear definitely takes up the slack and becomes your dominant ear.

(COURTLAND)
Well you’ve had a really interesting career path. Writing for the New York Times, becoming an editor for one of the daily papers. How was it that you became involved with the Hearing Loss Association of America?

(KATHERINE)
Oh, well that’s interesting. So I didn’t know anybody with hearing loss, or I didn’t think I knew anybody with hearing loss. As I discovered I knew a lot of people with hearing loss. I left the Times…there was a buyout offer in the fall of 2009, which was four months after I got my cochlear implant. I was having a very hard time adjusting to the implant. I just realized I couldn’t do this job. It was too much hearing. So I took a buyout, I had worked there a long time and got a nice payout. And I started on a new career, and one skill I have is the ability to write. So, after a few months…it took me a while to recover from not being a New York Times employee. But after a couple months I began thinking about what I could do, and I realized that there was actually very little popular literature about adults who lose their hearing. There’s a lot of wonderful books about deafness, but there’s very little about what the adult experience is of losing your hearing. So, I decided to write a memoir of losing my hearing, which is called Shouting Won’t Help. I was pretty honest in the book, I go through all the struggles I had, the mistakes I made. I tried to make people understand that the depression, the isolation that they may be feeling is a perfectly rational response, and how to help overcome it. So I wrote that book, it was published by a major publisher. And because…I mean, my instincts were right- nobody really did know about this. So, for a first book I got an enormous amount of publicity- I did a lot of radio, television, and newspaper interviews. People were very interested to find out that there were adults who looked like they were living normal lives who actually couldn’t hear half of what you were saying. And then I did a second book which is more of a practical guide to hearing aids, all different kinds of hearing devices, different kinds of resources available to people with hearing loss. That one is called Living Better with Hearing Loss. It’s basically a guide to how to make your life work better with hearing loss. Then I got involved with the Hearing Loss Association as part of the research for that book. I quickly became a very active member. I’m not only president of the chapter, but I’m on the national board as well. We meet four times a year in the offices in Bethesda. It’s a very active advocacy and educational organization.

(COURTLAND)
You said something that I thought was really interesting. Your senses are something that you can’t turn off or turn down. But when you have a cochlear implant, and you said it was too much hearing. I think we see a lot of videos all the time, and they’re great videos, of people who have their cochlear implant turned on and then they hear their mom for the first time and it’s wonderful, overwhelming, and very heartwarming. But we don’t hear the stories of people who get their cochlear implant turned on and it’s too stimulating, it’s too much. Especially in a city like New York. Do you think that happens fairly often?

(KATHERINE)
I think it does happen often. And also, remember, those babies aren’t telling you what they’re hearing. They’re very heartwarming videos, but you do sometimes wonder – well is this baby looking like this because all of a sudden there’s noise in it’s ear, or can it really hear the mother’s voice? And if it can hear the mother’s voice…I mean I’m a real skeptic, how would it know that that’s its mother’s voice. But, yes, I think especially for anyone past the early years, early infancy. And they do recommend for deaf children that the first cochlear implant be at about six months because they want to catch the children while they’re still prelingual, while their speech pathways are still developing. But for adults, getting that cochlear implant turned on can be…it can sound like a lot of noise. One thing that’s coming to be recognized, that has not been much in the past, is the importance of auditory rehabilitation, formal exercises to help you to learn with those signals that are coming in through the cochlear implant. Because they’re not words, it’s…through your hearing aids you’re hearing words that are carried by sound waves. Through your cochlear implant, you’re hearing digital sound. So it takes a while to get used to that. I actually like the sound of voices in my cochlear implant better than the voices in my hearing aid- they sound more like what I think they should sound like. But I just don’t have enough volume…I guess I can’t enough get volume to make this my primary ear. Or maybe it’s, as you said, I’m just so used to using my right ear that I can’t make that left ear work hard enough.


(DAVE)
I’m fascinated by your second book because I’m a big fan of technology. I love to look at technology, I love to be kind of on the leading edge of technology and adapt it. Tell me about some of the advances that you’ve seen in the last 10 or 15 years in relation to hearing aids and implants. I mean, it’s got to be a fascinating time. I’ve got friends who work at Oticon, for example, and I hear them talk about the work they do and the research that goes into it, and it’s really fascinating to me. I’m sure you’ve seen many many changes from the days of when a hearing aid was something you wore around…you know…

(KATHERINE)
I’m that old…

(DAVE)
Haha. But I’ve seen pictures…where you had the cone, and you held the cone to your ear to get the sound in…

(KATHERINE)
Ear trumpet…

(DAVE)
Ear trumpet haha…tell me about some of the technology changes that fascinate you.

(KATHERINE)
Well first of all, just hearing aids- they’re so much better than they used to be. And they are all digital now. They all have ways to filter sound so that they filter out the unwanted noise and let in the noise you want to hear. They’re not up to doing that in a really noisy restaurant generally, but in an ordinary conversation the hearing aids are pretty great. Especially for people with mild to moderate hearing loss they work extraordinarily well. Unfortunately, those are the people who basically think they can’t…don’t need hearing aids. I can’t tell you how many people say: “Oh I can’t hear in a restaurant either but I don’t need aids.” But actually that is when you need hearing aids because you want to make sure that you keep on being able to hear and that you keep your brain active. I think the area…well cochlear implants, of course, are a phenomenal invention and the inventors were honored last year with…I forget which prize it was, but one of the big medical prizes. But, what a lot of people…where I think the real difference is in assistive devices. If your hearing is as bad as mine, and I’m profoundly deaf without this (cochlear implant) and have severe hearing loss in this (right) ear. So, my hearing can only be corrected to a certain extent, but there are devices that I can use that…for instance, if you were across the room over there giving a lecture, I could ask you to hang a transmitter around your neck or clip it to your lapel, and that sound would come wirelessly directly into my hearing aids and my cochlear implants. That’s a great advantage. Looping is a way of putting wire around a room and that wire works with the auditorium or classroom sound system to send the speech directly to your ears wirelessly. It’s actually phenomenally inventive. We don’t see it very often because it’s expensive to install and people prefer not to think about hearing loss if they possibly can. The technology is changing all the time. One of the things that I’m most excited about is that there was a commission for the National Association of Sciences, National Academy of Medicine, and others which recommended that the FDA approve a basic hearing aid- a $1,000 hearing aid which would work very well for people with mild to moderate hearing loss. It would cost $1,000 instead of $3,000. The FDA hasn’t come up with a ruling on that yet, but I’m hoping that they will approve a $1,000 hearing aid because then I think many more people will get hearing aids, insurance might start to cover them if the price came down. I think also that the more people who have hearing aids, who are wearing them, who are open about it, the stigma disappears. It’s really a matter of numbers. I mean, look at us. All three of us are wearing glasses- there’s no stigma attached to wearing glasses.

(DAVE)
Yeah, absolutely. So where can we find more information? Give us your website. I want the people out here at home that are watching this, and that need more information- I want them to be able to find you. So where can we do that?

(KATHERINE)
Ok. Well you can find the Hearing Loss Association through Hearing Loss Association New York City, which is hearinglossnyc.org. And the national website is hearingloss.org. My personal website katherinebouton.com. And I have a blog that I write on pretty frequently there. I try to keep up with news, I reflect on experiences I’ve had and that other people have had, and I get a lot of comments from people writing in about their own experiences. I love that blog because it’s really a way for me to communicate with other people, figure out what their questions are, what’s bothering them- where I can help. I love being in a position where I can help.

(DAVE)
So, Katherine, what should somebody look out for? You know, we’ve all been in noisy places, and we’ve all been in situations where it’s been a little difficult to hear. What are some of the signs that one should look out for that might indicate that they need to go see a doctor about this?

(KATHERINE)
Well, I thought you were asking a different question, which I’ll answer first: What are the signs that the place is too noisy and that your ears are being damaged? If you walk out and you can’t hear for a period of time afterwards, or if you have ringing in your ears- the next time you go to that place you should wear some kind of ear plugs. There are musician’s ear plugs that are not very expensive. They’re made for musicians because they allow all the ordinary sound to come in, but if you’re a musician sitting in front of the piccolo section they block that deafening piccolo sound. But now I forget what the question you actually asked was…

(DAVE)
What are some of the signs? We’ve all been in situations where it’s been a little difficult. But are there signs…ringing in the ear, or you just can’t hear, or is there a frequency that you might be missing? What are some of the things where you should say: “Boy you really need to go get that looked at”?

(KATHERINE)
Well definitely single-sided hearing loss, sudden hearing loss is very important. But I think when you begin to realize you’re having more trouble hearing than other people are...in a restaurant. If you find yourself asking people to repeat a lot. One of the things that I always find to be a telltale sign is if you walk out of the bathroom and leave the water running all the time- that means you’re not hearing that the water’s running, and so you forgot to turn it off. You know, I think you just begin to realize that you’re having close calls, you’re not hearing things coming up behind you. The important thing I think is not to dismiss that as just part of aging. It is a part of aging, and hearing does definitely worsen generally with age. But we have a lot of problems of aging and we treat all of them. We treat high blood pressure, we treat cholesterol, we keep ourselves healthy by treating those things that begin to deteriorate and the same is true with your hearing. And not treating hearing loss has really some very negative consequences, including something which I think all of us fear, which is cognitive decline. If you’re working really hard to understand what somebody’s saying, to put the words in a sentence together; you don’t have the brain power, the cognitive power left to actually synthesize that material, remember it- memory problems are a really big issue for people with untreated hearing loss. The balance system is also affected. People with untreated hearing loss, and I’m not sure whether this also affects people with treated hearing loss, have a much higher risk of falls. But the cognitive decline…it stands to reason that if you’re correcting your hearing, and if you can hear without putting all your cognitive resources into it- you are helping yourself. There’s a very large study going on right now to prove whether the use of hearing aids helps or not. I’m not sure when that’s coming out, I think it’ll be out in the next few years. That’ll be epidemiological proof that wearing hearing aids helps. But in the meantime, I always say, “why wait?”.

(DAVE)
If you think about it, you get to a certain age and you go for your annual physical. You get to a certain age and you go for the colonoscopy. You should put that on your calendar for an annual hearing check.

(KATHERINE)
Well, this is actually a big issue because doctors, primary care physicians…they’re the ones that send you for the colonoscopy, and they’re the ones that send you, if you’re a woman, to have a mammogram…most primary care doctors, 2/3 of primary care doctors, never check or mention hearing loss. They don’t even do a basic hearing screening, which would be to say, “Do you think you’re having any trouble with your hearing?,” or snap their fingers behind your head to see if you can hear. They’re not going to do hearing tests in their office because that’s very time consuming, it’s something for a specialist. Most aren’t even saying…you know, bringing up the subject of hearing as part of general health. This is something that HLAA is really focusing on. We’re trying to get primary care doctors to understand that they’re the ones that are going to be listened to. Your wife can say to you, you know, a hundred times: “I don’t think you’re hearing very well.” But when your doctor says it, it carries a lot more weight. Especially gerontologists, and they’re no better at it than doctors who treat younger people, just have to learn that hearing health is really part of aging well.

(COURTLAND)
It’s a part of your overall health as well.

(KATHERINE)
Yes. Definitely.

(COURTLAND)
So how is the HLAA trying to educate doctors on this very important part of the physical exam?

(KATHERINE)
We have some very carefully crafted position statements. We have various members of our board and of the HLAA staff speak at physicians’ gatherings. It’s hard, actually. It’s hard to communicate to a whole group of people, but we hope that by making this part of our mission, that it will spread to the larger medical population.

(DAVE)
So Katherine, what’s on the horizon? We met you at one of your walks, your functions. It was so great. When is the next walk? What’s coming up on the horizon for your New York City chapter?

(KATHERINE)
Ok, well, I think probably your viewers don’t know what you mean by “walks.” The Hearing Loss Association has about 170 chapters around the country, and most chapters hold every year in the spring or the fall what’s called a “Walk4Hearing.” It’s a fundraiser, but it’s also an educational event, it brings together people…our walk, even though it’s in New York City, brings together people from the whole metropolitan area. You were there, we had thousands of people. It’s a fun event, it raises awareness of hearing loss among people who just happen to be walking by. It allows people to meet other people with hearing loss, and talk to other people with hearing loss. We have a lot of families who come that have children with hearing loss. It’s one of the few places where sort of the whole population comes together. The members form teams, like you could have a healtheo360 team. Whatever moneys you raise, I think it’s 40% of them, you keep to do whatever you want with- maybe you want to paint a new backdrop. But a lot of schools for the deaf, a lot of audiology programs, a lot of organizations, non profit organizations use the walk as a way to raise funds for their own projects. The other 60% is divided between our national office and our chapter. It’s a good source of funding for us. For me, the main value of it is seeing so many people together who have hearing loss, and seeing just the enormous variety of ages, races, ethnicities, economic levels. All of a sudden we’re all there together doing one thing. As you saw, it’s a really fun event.



(DAVE)
It truly is amazing. Go to the website, find a walk in your area, get out there, support the cause. You’ll feel really good, and as Katherine said, some of the money that your team raises you can keep for special projects of your own. So, Katherine, great job. It’s so good to see you. Thanks for coming in and joining us today. I’d like to thank you for tuning in this afternoon, and I’d like to thank our sponsors for making this all possible. Remember, all of our episodes can be viewed on demand at healtheo360.com, and our podcast is always found in the iTunes store.

(COURTLAND)
Well we love social media, and we’re all over Facebook, Instagram, Twitter, and Pinterest using the hashtag #RealStories when posting, and we’d greatly appreciate it if you would do the same. On behalf of Dave Duplay, myself, and the entire healtheo360 family, we’d like to thank you again for joining us today, and we look forward to seeing you again next week.
 

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h360 LIVE: Spotlight on Survivors (part 1)
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h360 LIVE: Katherine Bouton from the HLAA
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