Hearing Health Magazine

My Magic Ear Kid

By Joey Lynn Resciniti

Julia was a full-term baby born exactly one week before her due date. She was healthy and perfect. She passed her newborn hearing screening.

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The hospital bassinet had a cabinet underneath where the diapers were stored. If I wasn’t very careful with the doors, they would slam loudly. Julia would startle and cry.

At least she can hear, I thought. This would prove ironic to me when Julia showed signs of having problems hearing. When Julia was 15 months old, I became concerned with her speech—or its lack. She’d babbled a little bit as an infant and then didn’t say much until at a year or so when she said hi, once.

No one wanted to admit there was a problem. My husband was even a little defensive about the subject. Grandparents chimed in that she was just a “late talker.” When I mentioned my concerns to the pediatrician, he recommended the state’s early intervention program, which led to our qualifying for twice-weekly speech language pathologist visits.

All this time, no one suspected Julia wasn’t hearing. With the specialist’s help, small gains were made in her speech. She developed a vocabulary of a few dozen words but never progressed to speaking two-word sentences or multisyllabic words.

So by the time we made it to the audiologist over a year later, when she was nearly 3, I had come to terms with Julia having some level of hearing loss. I knew when she turned her back to me, she wouldn’t respond if I called, and that was a big sign to me.

A Series of Tests

Sitting on my lap in the soundproof booth, Julia turned toward the speaker that was making a loud sound. But as the sounds got quieter, I got a heavy feeling in my stomach. She stopped turning toward the speaker. Finally the audiologist leaned into the microphone and told me she was coming over to our room. I willed myself not to cry as she said she’d found a moderate hearing loss in both ears.

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The audiologist next used little headphones to transmit sound directly to Julia’s auditory nerve. The results showed Julia’s hearing loss is sensorineural, a nerve problem, and not a mechanical problem like a tube that is too small in the ear. I was told that it is not uncommon for a newborn to pass a hearing screening, like Julia did, and then find something later. The audiologist reassured me that we’d found it sooner rather than later, and that intense speech therapy would catch her up.

The next few months were tough. We scheduled an auditory brainstem response (ABR) test. For this test, the audiologist sedates the child and plays a series of clicks while measuring brain activity. This test is often done for young children to confirm their hearing loss before they’re fitted for hearing aids.

Our family was not ready to accept the first diagnosis and kept questioning the results. But I was with Julia in the booth, and knew it was correct. So when the ABR confirmed the hearing loss, I set to work managing the appointments and paperwork that would eventually help my daughter speak and thrive.

The first thing the audiologist showed us after the ABR testing was the “speech banana.” This was a confusing bit of information at first—banana? Speech? The speech banana is a visual aid for a very quick introduction to hearing loss and the varying levels of severity.

Normal hearing is in the 0 to 20 decibel (dB) range at the top of the banana. All speech sounds (vowels as well as consonants and consonant pairs) are above where Julia can hear with her 55 dB loss. Theoretically, without hearing aids she can’t hear any of those sounds.

Things louder than 55 dB, like a dog barking or a piano, would be accessible for her without hearing aids. But the tricky part is that it isn’t so cut and dry. Julia wasn’t unable to hear all language, and she also wasn’t always able to hear dogs barking.

Instant Change

We ordered hearing aids and earmolds. The audiologist showed us how to insert the tiny size 13 battery and talked to us about school accommodations and speech therapy as she programmed the little hearing aids for Julia’s specific hearing loss.

I’d thought about the moment she’d first hear with her new hearing aids. It was going to be the first time she’d hear my voice. Maybe the first time ever. I wanted to say, “I love you.” I wanted to say something nice, something comforting.

The audiologist worked the molds into her ears and clicked the battery doors shut. Julia’s eyes opened wide and her hands clenched on the arms of her chair. She could hear—and she was terrified!

“These are your new magic ears,” the audiologist said.

I didn’t say anything nice or comforting. I couldn’t help myself, I started to laugh! She looked so adorable, like she was on a roller coaster rather than an office chair. I forgot all about making a grand first speech and instead just beamed at her. Julia’s head swiveled to the ceiling. I noticed an obnoxiously loud fan for the first time.

On the way home, Julia tried to repeat just about everything we said. She could hear above the banana, all the vowel and consonant sounds. She began mimicking speech immediately. Every noisy thing that I had never taken the time to notice before was new and interesting.

We were warned that it might be difficult to get Julia to wear her new magic ears. The audiologist told us to be very firm so she wore the devices during all waking hours. If she tried to take them out, back in they went.

Eventually, at age 5, Julia learned to insert her hearing aids herself, with the promise of a sleepover once she could show responsibility. She began to take ownership of the aids, poring over earmold colors and designs (striped, swirled, polka-dotted) with the practiced eye of a stylish tween (she wasn’t yet 8). She became a connoisseur of the hand-shaped earmold (great) vs. one that is made through an automated process (not so great).

Responsibility Shifts

As time goes by, those early years begin to fall into their proper perspective. I used to think it would mean something to me if Julia could someday tell me that she heard me when she was a toddler. Time and distance have shown that she doesn’t remember much of anything from her prelingual years. Her memories start when she was about 4. Everything prior to that comes from pictures and videos.

Some of the videos, like one when she is about 2 showing her fascination with lightning bugs, are painful for me to watch. In the video, you can hear me prompting Julia to say the word “bug” over and over, and watching it now I see plainly that she is confused and cannot hear us saying the word.

I wish I’d realized back then that she needed help. I wish I hadn’t spent a whole year frustrating myself and my baby. If I had to do it again, I would tell myself to get her hearing tested. And also that she was going to be okay and that in three short years she’d be saying so much more than “bug.”  

Life with a 13-year-old hearing aid user is much easier. Julia is an independent seventh grader who gets straight As. We have as a family weathered ear infections with the potential to wreak havoc on a spelling test, late-night searches for a hearing aid battery among tangled twin sheets, and hearing aids that can’t be worn in the pool.

Now there are whole chunks of time when I don’t think about her ears, a blessing made possible by experience. We agonized when Julia’s hearing ability dropped another 15 dB to 70 dB, putting her in the severe category, and feared her hearing would progress even more, but it did not.

At the very first diagnosis, the ENT (ear, nose, and throat specialist, or otolaryngologist) assumed Julia’s loss is genetic, but the markers haven’t been discovered yet. The overwhelming majority of children with hearing loss—more than 90 percent—have typical hearing parents. We just don’t know.

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Years later Julia’s audiologist explained the drop: “Sometimes with a change in a child’s ear canal size, it may seem as if there is a 10 to 15 dB change in hearing across the frequency range. As the ear grows, a little more sound pressure may be needed to detect sound. This will result in what looks like a change in hearing but may just be growth of the ear canal.” This makes sense. After eight years of steady audiograms and this explanation, I am finally able to let go of those lost decibels and my fear of losing more.

Every now and then there’s a head cold, dead battery, or damaged bit of ear tubing, and I am once again that younger mother, riddled with anxiety about taking care of Julia’s hearing. But the shift in responsibility has become hers. Julia is the one taking the lead on troubleshooting her technology at home, school, the pool, wherever she goes. At 13, she is the one always needing to think about her ears. Perhaps that’s what we’ve been working toward all along.

This article originally appeared on the cover of the Summer '18 issue of Hearing Health magazine with a supporting story from Julia Resciniti  

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Hearing Better Through the Ages

By Rebecca Huzzy, Au.D.

Chances are, you visit your doctor for an annual physical, wear a seatbelt, and use sunscreen. These are just a few small efforts we regularly make to stay healthy and injury-free.

Tending to the health of our hearing is another important, simple way we can maintain our overall physical and emotional well-being. Supporting hearing health begins at birth, when we test newborns for hearing loss, and continues into our elder years, when assistive technology can vastly improve overall health and quality of life.

Diagnosing Newborns & Infants

According to the Centers for Disease Control and Prevention, hearing loss is one of the most common congenital conditions, impacting approximately 12,000 infants per year. About half of these cases are linked to certain genetic syndromes, such as Down syndrome, Treacher Collins, and Usher syndrome.

But with the advent of universal newborn hearing screening programs in the early 1990s, hearing loss can now be identified and treated very early. According to what we call the “1-3-6” EHDI (Early Hearing Detection and Intervention) national goals, infants should be screened by age 1 month; diagnosed by age 3 months; and in an early intervention program by age 6 months.

“The effects of providing acoustic stimulation to the immature neurological system, including the brain, and combining the input with a rich and meaningful environmental experience, allows children to develop sufficient auditory skills to learn spoken language at a very young age,” says Janice C. Gatty, Ed.D., the director of Child & Family Services at Clarke Schools for Hearing and Speech.

This means families should expose their infants to sound frequently and consistently—talking to them, naming objects, narrating actions, singing, and reading books. With access to sound and an early intervention program at this young age, a child with hearing loss can begin learning to listen, babble, and eventually talk.

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Common Risks for Adolescents & Teens

Since the prevailing cause of hearing loss in young people with typical hearing is noise exposure, we need to educate kids early, as many begin listening to music on personal devices, playing in bands, and attending concerts at a young age.

According to the American Speech-Language-Hearing Association, exposure to sound that is higher than 85 decibels (the volume of a blender, hair dryer, or siren) for an extended period of time can cause permanent hearing damage. And the maximum output of most MP3 players is a powerful 110 decibels!

Fortunately, there are options for volume-limiting software that can mitigate unhealthy sound levels. Many devices offer parental controls and volume-controlling apps that limit noise levels, and there are various kid-friendly, hearing-healthy headphones available.

Follow the 80/90 rule: Set the maximum headphone volume to be 80 percent (not 100 percent), and listen for up to 90 minutes daily. If you listen for longer, lower the volume even more.

How Sound Exposure Catches Up With Us in Middle Age

“Adult onset hearing loss typically progresses slowly over the course of a number of years,” says audiologist John Mazzeo, Au.D., the audiology supervisor at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware.

Noise-induced hearing loss (NIHL) can have a sneaky, cumulative effect, similar to the impact of years of exposure to the sun. The people at the highest risk for NIHL work in noisy professions and include musicians, farmers, dentists, airport workers, and military service members. For those who spend time in loud environments, wearing hearing protection is the best way to guard against NIHL.

Ototoxic drugs (drugs harmful to hearing) and certain conditions, such as Ménière’s disease, can also contribute to progressive hearing loss over time. Regular screenings, prior to the recommended age of 50, are especially important if hearing loss runs in the family, or if you have symptoms associated with hearing loss, such as tinnitus, dizziness, or a perceived decrease in hearing.

Caring for Seniors as Hearing Abilities Change

Hearing loss becomes much more prevalent with age, affecting more than 30 percent of people over age 65, and 80 percent of adults over 80.

Hearing loss in seniors is linked to serious health conditions, including dementia. When communication is difficult, many people will avoid social situations, and research shows that social isolation is linked to cognitive decline, a key symptom of dementia. Additionally, difficulty hearing can impact the effectiveness of our other neural processes.

The risk of falls also becomes more likely with age, due to both decreased spatial awareness and increased cognitive load. A 2012 Johns Hopkins study found that older adults with mild hearing loss were nearly three times more likely to have a history of falling.

Staying Fit

If you’re diagnosed with a hearing loss, remember: Hearing loss is not only very common, it’s also very treatable! A licensed audiologist or hearing healthcare professional can discuss options with you, including hearing aids and assistive listening devices.

When it’s a loved one struggling to hear, or being stubborn about getting help, be patient. Gain their attention before talking, rephrase sentences instead of repeating them, and encourage trying out some kind of amplification.

Think of your hearing health as essential to your body’s complete performance. Our bodily systems are all interconnected; neglecting to protect our ears or refusing helpful interventions can have cascading health effects. When you take even small steps to protect your hearing health and that of loved ones, such as through regular hearing screenings and using earplugs in noisy environments, take heart in knowing you have bolstered your overall well-being.

Rebecca Huzzy, Au.D., CCC-A, is an educational audiologist at Clarke Schools for Hearing and Speech at its Philadelphia location and a clinical audiologist at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware. For more, see clarkeschools.org. This article also appeared in the Spring 2018 issue of Hearing Health magazine. For references, see hhf.org/spring2018-references.

Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.

 
 
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You Are a Masterpiece

By Sophia Boccard

The day before Fourth of July, 2012, the second diagnosis came in. “It’s true, you have Usher syndrome,” announced the retinal specialist. Baffled and unwilling to accept the corroboration of the first retinal specialist’s initial diagnosis, I immediately responded with, “I’d like another opinion—is there anyone you can recommend?” In between both appointments, I had learned that Usher syndrome is the most common genetic cause of combined deafness and blindness.

  Credit: Evan McGlinn

Credit: Evan McGlinn

The hearing loss diagnosis was not a new discovery. It had been detected when I was 4; my parents were told I lost my hearing as a reaction to an antibiotic given to me during an emergency surgery. Since then, having moderate to severe bilateral hearing loss meant wearing hearing aids, attending speech therapy classes, and walking around with an assistive FM listening system in school.

Growing up with a hearing loss gave me a new perspective. I had to learn to defend myself against bullies who would occasionally yank my hearing aids and throw them in the trash. And yet, here I was refusing to accept this “other” condition and learning that I had a combined hearing and vision loss diagnosis. After 26 years of thinking otherwise, it was certainly a rude awakening to learn that the hearing loss was not caused by the antibiotic.

Just a few short weeks before, I had been sitting in my optometrist’s office for a routine eye exam to refill my prescription for contact lenses. The optometrist noticed some inconsistencies during my examinations and asked me to stay for more thorough exams. A standard 20-minute visit turned into a two-hour ordeal. After reviewing the results she somberly referred me to the retinal eye specialist who gave me the initial diagnosis.

This retinal eye specialist—who was the first person to utter, “You have Usher syndrome” to me—had the worst bedside manner. I refused to just take his word for it. Immediately after I left his office I cried—a lot—but then regained my composure and made a few calls to see a second retinal eye specialist doctor for a second opinion.

And so on that day in July, even after the second retinal specialist reiterated the first specialist’s diagnosis, I insisted on seeing a third specialist who would prove them both wrong.

I went to the National Eye Institute (NEI), part of the National Institutes of Health, in Bethesda, Maryland, for the third opinion. It was there at the NEI when everything came to a screeching halt and the final diagnosis was confirmed with a genetic test.

The test showed I was born with the mutated gene USH2A, a double recessive genetic disorder that requires both parents to have the exact same copy of the gene. Usher syndrome has three types—types 1, 2, and 3—each with many subtypes such as Usher 2A, Usher 3A, Usher 1F, etc. Combined there are approximately 400,000 people worldwide who have been diagnosed with Usher syndrome. But even with 400,000 people around the world with Usher, there still isn’t enough information easily accessible for individuals who receive this diagnosis.

  Sophia and her family.

Sophia and her family.

That day at the NEI launched the next phase of my life. In the biography of my life, the following four years, 2012 to 2016, could be titled “My Wasted Years.” This is when I became a recluse, felt sorry for myself, and cried. Every. Single. Day. I had no way of expressing my sadness or even articulating my feelings, as I didn’t even know what it was I was feeling and how to cope with it.

Those were the years I felt as if I went blind overnight (and let me be clear, I did not go blind overnight—nor will I go blind overnight). I felt like there was this black cloud following me everywhere, hovering over my head and bringing constant rain, making me feel like a drowned rat.

Depression became my reality and my identity. I told a few people about the diagnosis but couldn’t elaborate on the condition since I felt like my world was ending. My desire to live was negligible. How could I imagine life with no sight? What would the quality of my life be like? What would I do without my independence?

These were all questions that ran through my head as the life I imagined living slowly started disappearing from my mind into total darkness. For four long years I asked myself repeatedly, What is the point? What do I have to look forward to?

Then it hit me. Literally. I was walking through Times Square during rush hour, a scenario that can overwhelm most people, when I slammed into someone who screamed into my face, “Watch where you’re going, a**hole!” It was in that instant that an internal shift took over and I shouted back, “Get out of MY way, a**hole!”

It was then I accepted I needed to stop looking at myself as a victim of a mutated gene and to start owning it.

I took a step back and recognized that all this time I had erroneously pitied myself. I felt sorry for my own future and what I was going to lose, and I forgot what it meant to just live life. In preparing for a future with vision loss, I was preparing for an apocalypse that would never come—unless I let it. I needed to stop judging myself and learn to respect myself all over again.

Thus 2016 marked the year of learning to be in control of my own reality, a brand new chapter in this biography of my life. I reached out to the NEI to connect me with someone with Usher syndrome who was willing to exchange emails and stories. Soon after, the NEI introduced me to another patient with USH2A who, after initially being pen (well, email) pals, we became “Ushties” (Usher + besties). Later that year I went to an Usher Syndrome Conference, held by the Usher Syndrome Coalition, in Seattle, and continued meeting many incredible, inspirational people who today are still some of my closest friends.

With these newfound connections I began advocating for both hearing loss and vision impairment communities. Through a friend, I was introduced to Hearing Health Foundation (HHF) and joined their Young Professionals Board for two years before being invited to sit on HHF’s Board of Directors. I also currently sit on the board of the Usher Syndrome Society and am involved with Young Professionals Groups at both the Foundation Fighting Blindness and the Greater New York Chapter of the ALS Association, fighting the progressive neurodegenerative condition known as Lou Gehrig’s disease.

My fiancé and I have also decided to learn American Sign Language as a tool to communicate with new friends from the Usher community. Fundraising and awareness events have started to fill up my calendar. I look at each event as an opportunity to educate those who are unfamiliar with the importance of hearing and vision health and what it means to lose your hearing or your vision, either in part or completely.

For me, it’s the lack of awareness about how the diagnosis of either hearing or vision loss can have an effect on the individual’s own mental health as well as that of their loved ones. There is not enough support for the recently diagnosed. The public isn’t familiar with how to accommodate someone with hearing or vision loss, and since both conditions are not entirely transparent—it’s difficult for people to recognize that they are communicating with an individual with hearing or vision loss —it makes it that much harder to help.

I’m most proud to have the opportunity to teach willing learners that being deaf or blind is not something to pity but rather something to respect. I strive to demonstrate to others that even with our limitations we can still do everything we want, even if we need a little extra help getting there.

Not too long ago someone said to my fiancé, “Sophia is so lucky to have you. You are an incredible person for staying with her even through her diagnosis.” Wait a second, what? My first thought was that my fiancé is the lucky one! To be fair, neither one of us is any more “lucky” than the other. We both equally  deserve each other—and despite comments like these, mostly well-intended (or not), no one will succeed at making me feel less of a person.

While we can each feel insignificant about our own lives when there are so many success stories of extraordinary people pulling off impossible accomplishments despite their limitations, let’s remember that we are each the star of our own story. We are the masterpieces of our own reality.

My story doesn't have a neat ending or a twist, reassuring the reader with a fairy tale conclusion. I’m just here to remind you, my new friend, that I’m not broken. I’m not half of a person; I’m not someone to “fix.” Usher syndrome is a part of who I am, but it is not my identity. I am a human being, who like any and everyone else, is whole and perfect just as I am.

If you have a health condition, don’t let it consume you. Own it. You are the badass who can survive against all odds. People are lucky to have you in their lives. Remind yourself to feel appreciated, get out there, and please, embrace your newfound celebrity status!

HHF board member Sophia Boccard works in digital marketing and lives in New York City. She wrote about an Usher Syndrome Society event she helped organize. This article original appeared in the Spring 2018 issue of Hearing Health magazine. For references, see hhf.org/spring2018-references.

Empower groundbreaking research toward better treatments and cures for Usher syndrome. If you are able, please make a contribution today.

 
 
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The Next Two Million Days

By Lauren McGrath

The future sounds clearer and looks brighter for Ethan, age 6, who recently began wearing ReSound LiNX 3D hearing aids recommended by his audiologist. His new hearing aids were very generously donated to him by ReSound.

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Ethan was born with mild-to-moderate hearing loss in his right ear and moderate hearing loss in his left. Thanks to universal newborn hearing screening legislation, an initiative promoted by Hearing Health Foundation and other organizations, Ethan was diagnosed at birth and able to receive immediate intervention. In 1993, only 5 percent of newborns were tested at birth for hearing loss; today 97 percent of babies are screened before they leave the hospital. Since age 6 weeks, Ethan has worn hearing aids and received speech therapy. He is now a happy first grader at a New Jersey school with many on-site services for students with hearing loss.

Ethan is an older brother to twin girls, an avid self-taught reader, a math enthusiast, a soccer player, and a martial arts student. He is ecstatic that his new hearing aids have already improved his life; from the moment he put them on, he noted how much more easily he could hear with them compared with his previous pair.

He especially appreciates their small size; the devices do not impede his favorite activities and don’t fall out. As Ethan is easily overwhelmed by noise, he also likes that he can seamlessly adjust the volume on his hearing aids through the ReSound Smart 3D smartphone app. He’s so proud of their style and features that he brags about them to his soccer teammates.

“Ethan asked me, ‘Can I wear my new hearing aids for the next two million days?’” says Jason, Ethan’s dad. It speaks volumes to Ethan’s experience that he is ready to make a 5,500-year commitment to his new hearing aids. At a young age, he is already on track to overcome the challenges associated with hearing loss. Ethan is confident about his hearing loss, and he and his family are thankful he was graciously provided with hearing devices that make him happy.

Ethan is one of our youngest participants in "Faces of Hearing Loss." This article originally appeared in the Winter 2018 issue of Hearing Health magazine

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HHF Celebrates 60 Years

By Yishane Lee

The legacies of Collette Ramsey Baker and Wesley H. Bradley, M.D., underscore the shared mission of Hearing Health Foundation and the medical community to support and fund groundbreaking scientific research.

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Sixty years ago, Collette Ramsey Baker founded Deafness Research Foundation, now known
as Hearing Health Foundation (HHF). After living with a hearing loss for decades, she found relief through fenestration surgery, an early otosclerosis treatment. In gratitude, Ramsey Baker wanted to give back. Her daughter, Collette Wynn, says, “My mother made a promise that, if the operation worked, she would do something to support research to find the causes of deafness and develop better treatments.” HHF was launched in 1958.

Ramsey Baker introduced her surgeon, Julius Lempert, M.D., who pioneered the fenestration surgery, and Walter Petryshyn, M.D., her otolaryngologist (ear, nose, and throat specialist), to finance and industry leaders, and from this talented group came HHF’s first Board of Directors, with Ramsey Baker becoming HHF’s president.

In 2006, this magazine ran a profile of Ramsey Baker featuring the recollections of HHF’s early years from Wesley H. Bradley, M.D., a skilled surgeon who went on to lead what became the National Institute on Deafness and Other Communication Disorders (NIDCD). Bradley passed away in 2012, two years after Ramsey Baker.

In the article, Bradley recounts how HHF’s mission so impressed Lempert that he spoke about the organization to leading otologists. “These individuals quickly saw the advantage of supporting a group that was firmly established to promote otological research,” Bradley said.

One early effort was the creation, in 1960, of a program to encourage people to donate their temporal bones to hearing science upon death. The National Temporal Bone Registry, now
overseen by the NIDCD, has led to countless research breakthroughs.

In 1963, physician support of HHF was formalized with the creation of The Centurions, a group of doctors who covered HHF’s administrative costs so all funds raised went directly to hearing research. Physicians also joined the board and launched the Emerging Research Grants program, which remains HHF’s flagship along with the Hearing Restoration Project research consortium.

Bradley’s three-decade involvement with HHF, including as a founding Centurions member and medical director, was recognized with the Wesley H. Bradley, M.D., Memorial Grant, awarded to a promising ERG scientist in 2014. “I had the idea of honoring Wes’s work,” says Bradley’s wife, Barbara. “The many years he spent working at Deafness Research Foundation, it really was a labor of love. He believed very strongly in its mission.”

Says Elizabeth Keithley, Ph.D., the chair of HHF’s Board of Directors, “Planned giving is a major component of HHF’s success today and into the future. It is with these achievements and many more in mind that we celebrate 60 years and look toward more groundbreaking discoveries in hearing and balance science.”

Yishane Lee is the Editor of Hearing Health magazine, a quarterly publication of HHF. This article originally appeared in the Winter 2018 issue of Hearing Health magazine. Read more about Bradley in “A Family Gift” in the Fall 2014 issue and “A Tribute to Wesley H. Bradley, M.D.” in the Winter 2013 issue.

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One Man's Military Perspective

By Colonel John T. Dillard, U.S. Army (Retired)

The top two disabilities for our returning veterans from Iraq and Afghanistan are hearing loss and tinnitus, or ringing of the ears (which is actually a sound inside the brain). Both conditions became a problem for me and for many of my friends in the service. A lifetime spent in the U.S. Army, starting in the 1970s, meant frequent exposure to gunfire and proximity to screaming jets and helicopter engines.

Even during a peacetime career in the military, our soldiers, sailors, airmen, and marines are subject to a barrage of auditory insults from the weapons and equipment they operate. It all stacks up to a gradual, although sometimes very abrupt, loss of hearing, usually starting at the higher frequencies. For those in the service, any age-related decline in hearing gets accelerated, to the extreme, by repeated exposure to noise at unsafe levels.

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For me, tinnitus began faintly and increased with more hearing loss, reaching a crescendo with one big acoustic trauma—a gunshot right next to me in 2009. I immediately began searching for any kind of treatment that would alleviate the loud ringing in my head, which was actually measured in a laboratory at being around a constant 70 decibels. That is roughly equivalent to the noise inside a fairly strong shower, and I soon discovered that people would use long showers to find a bit of relief by masking their tinnitus. (However, I take short showers!)

Armed with a background in biology and technology, I began to review all the research I could find. As it turns out, the typical tinnitus condition consists of several brain components: auditory (hearing it); attentional (your awareness of it); memory (persistence); and emotional (how it affects your mood). After many hours on the web, I spent thousands of dollars on things that didn't work, undergoing treatments in all areas of pharmacology, sound therapy, acupuncture, hyperbaric oxygen, and even transcranial magnetic stimulation.

None of these had any effect for me whatsoever. And despite some incredible recent advances in neuroscience to better understand all of the brain’s complexities, there is still no proven cure or even a viable treatment for tinnitus or to reverse hearing loss.

I eventually realized I would have to tackle my tinnitus with the only things out there that to me were credible for managing tinnitus. I eventually found an audiologist who would fit me with hearing aids that provided a built-in tinnitus masking sound. Without a doubt, this became the best purchase decision of my life...

Continue here to read the full version of "One Man's Military Perspective" in the Fall 2017 issue of Hearing HealthColonel John T. Dillard, U.S. Army (Retired), resides in Carmel, California, with his wife of 30 years. A senior lecturer at the Naval Postgraduate School in Monterey, Dillard spent his army career serving in mechanized and parachute infantry assignments and managing programs to bring new technological capabilities to warfighters. He serves on a consumer review panel of tinnitus treatments for the Department of Defense (DoD)’s Congressionally Directed Medical Research Programs and also conducts acquisition policy research for the DoD.

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When It's Not Just Hearing Loss

By Morgan Leppla & Laura Friedman

This year Autism Sunday, an international day to raise awareness of autism spectrum disorder (ASD), is on Feb. 12.

Did you know that one third or more of pediatric hearing loss cases overlap with another condition? This may sometimes be ASD, making treatment and management of co-occurring conditions a challenge.

In a 2007 report in the Journal of Deaf Studies and Deaf Education, British researcher Lindsay Edwards, Ph.D., cites an estimate that 30 to 40 percent of children with hearing loss have co-occurring conditions that could prohibit them from forming language, speech, and sociocognitive skills. But despite this large percentage, there is little research on hearing loss that occurs with other disorders. What research there is has shown the benefit of cochlear implantation for children with additional needs (such as physical or learning disabilities), and the difficulties of language acquisition and development for 3-year-olds with developmentally related conditions such as ASD, cerebral palsy, or Down syndrome.

One silver lining is that the fact that 30 to 40 percent of pediatric hearing loss may occur with other conditions may prove helpful in predicting future disorders. A July 2016 Autism Research paper suggests that a noninvasive measure of otoacoustic emissions in the inner ear—a common hearing test for infants, who are preverbal—may help identify the risk of ASD at an early age, accelerating treatment. Study author Anne Luebke, Ph.D., of University of Rochester Medical School, found that children with ASD often have trouble hearing a frequency range (1–2 kHz) that is important for understanding speech. The range includes sounds for the meaning-conveying consonants S-, H-, and F-.

Scientific conclusions can help shape future research, but cannot illustrate daily life for families with children with co-occurring conditions. Dual diagnoses make unlocking any child’s learning style challenging, but reviving research and upgrading professional training are essential tools in order to advocate for and successfully educate children with co-occurring conditions.

If you’re interested in funding research related to diagnosing and treating co-occuring disorders, such as hearing loss and autism, please consider donating today: hhf.org/donate or contact us at development@hhf.org.

This blog was adapted from an article original appearing in Hearing Health magazine’s Fall 2016 issue. For references in this story, see hhf.org/fall2016_references.

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Real-Time Text: The FCC Makes It Official

By Kathi Mestayer

  This will be the standard symbol for real-time text, from the RTT  website .

This will be the standard symbol for real-time text, from the RTT website.

Have you ever been on a phone call, slowly spelling out the word you just used? And finding out how very similar fifteen and fifty sound? Or how tough it is to communicate a word such as “impingement,” even if you do spell it?

The good news is that the FCC has now enacted the long-awaited transition to providing real-time text (RTT) by cellphone providers. "Real-time text allows characters to be sent as they are created without hitting ‘send,’” according to the Dec. 15, 2016, FCC press release. “This allows text to be sent at the same time as voice communications, permitting a more conversation-friendly service.”

People with hearing loss will now be able to clarify (or receive clarification) of spoken content by quickly texting the word(s) to the other party, without interrupting the ongoing conversation (or hitting “send”).

This action is discussed briefly in Hearing Health’s Winter 2017 issue here (before the official adoption of the rules by FCC had been completed).  

The new FCC rules require large phone carriers to make RTT available by the end of this year. The first phase would require users to download an app, but RTT would eventually be built into phones.  

According to Christian Vogler, the director of Gallaudet University’s Technology Access Program, AT&T worked closely with Gallaudet at various stages of planning for RTT. In one case the testing made it possible to show “how well it held up under network conditions that can be too poor even for voice calls.”

“Too poor for voice calls”—who hasn’t been there? Very soon we’ll have another option. For more information, see the RTT website.

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Hearing Loss and Music: A Curse and/or a Blessing

By Kathi Mestayer

I’ve always paid a lot of attention to music. When I was a kid, we (mother plus four daughters) would sing on car trips. Occasionally, my father would stealthily sneak his hand behind his ears, switching off his hearing aids. I never told.

As my hearing got worse, though, things got… odd. One day, in the car, singing along with a tune I’d known forever, I noticed a little dissonance. I stopped singing, and listened more closely, finally realizing that I was not singing in tune. I eventually got back in the groove, but it took some effort. The same problem comes up when I strum on the guitar, counting on the chords to give me the starting note. It’s not as easy as it used to be, but if I stick with it, the sweet spot will reveal itself.

           Kathi's Flute Pitch

         Kathi's Flute Pitch

It kept happening, once in awhile. When I finally thought to mention it to my audiologist, she said, “That’s pitch distortion. It’s pretty common in hard-of-hearing people.” Oh, great.

Making Things Up

If only that was the end of it. My imagination has had a field day, too. Once, while the vacuum cleaner was running, I heard it “playing” baroque music. At least it wasn’t hip-hop. And there was the time my husband and I were in a noisy restaurant, with a popular rock song blasting away. “Oh, I love this song!” he said. “Yeah, me, too,” I chimed in. Then we realized that we were each hearing a different song. Guess who was right.

Sforzando!

That’s the musical term for a sudden, forceful attack on a note or chord. Because hearing loss is often accompanied by recruitment (when an unexpected, sudden, noise triggers your startle response and cranks up the perceived volume), sforzando can definitely make it happen.

An example would be when a pianist ends a piece by suddenly hammering down on a chord. It can cause me to utter a startled “ack!” which is audible to both the musician and the audience. As happened a few weeks ago. After the concert ended, I went up to the pianist and confessed. “That was you?” he said.

“Yes,” I explained, “it’s called recruitment, and it’s a symptom of hearing loss. I hope it wasn’t too annoying.”

“Oh, no problem. I’ll take that over somebody in the audience falling asleep any day,” he graciously explained.

So, a happy(ish) ending. That time. It will happen again, undoubtedly. Hearing loss is an adventure, when you like it and when you don’t.

Watch for a related story on how hearing loss affects how music is heard in our Summer issue of Hearing Health magazine.

Subscribe now for your FREE print copy!

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Support HHF This Mother's Day

By Heather Friedman

  Laura (second from left) with her sister in-law Liza, her maternal Grandmother and Aunt, with Heather on the far right.

Laura (second from left) with her sister in-law Liza, her maternal Grandmother and Aunt, with Heather on the far right.

For three and a half years my daughter, Laura, attempted to hear and to be understood. As her mother, I struggled to make sense of her difficulties—which I knew in my heart did not stem from developmental or attention deficit disorders.

Prior to her diagnoses at three and a half, Laura had a very difficult time communicating. I took her to specialists and started her on speech therapy, with little result. When Laura was finally diagnosed and fitted with hearing aids, things began to fall into place.

When Laura finally received the correct diagnosis—hearing loss—I was relieved. Parents and children should not have to wait over three years to have this condition detected, struggling all the while with delays hampering social and emotional growth. Parents should not have to go through the pain of knowing something is holding their baby back, when it could be so easily detected.

In 1993, four years after Laura was born, Hearing Health Foundation’s steadfast advocacy work led to the passing of Universal Newborn Hearing Screening Legislation. As a result—today, 97% of American babies are tested for hearing loss at birth. This means newborns with hearing loss can immediately get the help they need through technology such as hearing aids and cochlear implants, as well as speech and language therapy. This means an easier life, from birth, for children with hearing loss.

Today, I am proud to say that Laura is a happy and successful adult. In fact, she is such a staunch champion for people with hearing loss that when a job became available at Hearing Health Foundation, she jumped at the chance to work there! As Hearing Health Foundation’s Communications and Programs Manager, Laura works hard to advocate for those with hearing loss, to prevent hearing loss, and most importantly to raise funds to research for a cure.

It is my hope that she can one day benefit from her tireless efforts. Your support can make my dream for her, and other people living with hearing loss, a reality. A gift to this amazing organization is a gift to all people with hearing loss, as well as to their families!

This Mother's Day, Hearing Health Foundation would like to shine a light on all Mothers for all they do for their children and families.

Please consider giving a gift in Honor or in Memory of a wonderful Mother you know. Your gift will be used to fund groundbreaking research to prevent and cure Hearing Loss and Tinnitus and to promote hearing health.

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