Hearing Loss & Tinnitus

Miracle Moments

By Casey Dandrea

Virginia toddler Charlotte (Charly)’s first experiences with sound using hearing aids captivated millions. The video, taken in 2017 when Charly was an infant, aired across multiple local television networks and went viral on the internet.

  Photo credit: Christy Keane (   @    theblushingbluebird   )

Photo credit: Christy Keane (@theblushingbluebird)

Charly’s mother, Christy Keane, is heard fighting back tears in response to her daughter’s expressions. “I’ve never seen that face before. You’re going to make me cry,” Christy says as Charly displays a smile and her eyes light up. For the first time, Charly was visibly reacting to Christy’s voice.

Charly’s one-minute viral video debut was more than heartwarming—it was educational. With technology, children born with hearing loss can communicate just like those with typical hearing.

Christy’s understanding of profound hearing loss before Charly’s diagnosis was minimal. “I had never met a deaf person in my life and had absolutely no knowledge on hearing loss or intervention options,” Christy says. Following Charly’s birth, Christy immediately surrounded herself and family with a team of supportive specialists to earn more about pediatric hearing loss and options for treatment.

Charly was diagnosed with a bilateral profound sensorineural hearing loss at age 1 month after failing all three hearing tests as a newborn. She was fitted with hearing aids at 2 months old, which she wore for eight months prior to her cochlear implant (CI) surgery in June 2018. Christy and her husband chose cochlear implantation for their daughter because they wanted to give Charly the best access to speech and sound for her needs.

  Christy and Charly. Photo credit: Christy Keane (   @    theblushingbluebird   )

Christy and Charly. Photo credit: Christy Keane (@theblushingbluebird)

Having had access to sound since infancy, Charly will enjoy the same opportunities as a child with typical hearing. Children who receive early intervention for hearing loss reduce their risk of falling behind in speech and language acquisition, academic achievement, and social and emotional development.

The video’s reception inspired Christy to chronicle her daughter’s progress on Instagram. Now with nearly one million followers, Christy is thankful to have touched so many individuals all over the world. Her #miraclemomentsoftheday posts, in which she records Charly’s reactions to her daily CI activation (and previously her hearing aids), are especially popular.

Christy is proud to have created a forum that provides encouragement to families of children with hearing loss. “Every day I receive a message from a parent of a newly diagnosed child and I can remember the exact emotions they are experiencing,” she says “I love to be an example of how fulfilling it is to be a parent-advocate and how quickly your perspective changes as you learn more about hearing loss and language options.”

Christy hopes to change perceptions of hearing loss offline, too. She volunteers with Virginia Hands & Voices, an organization that helps families of children with hearing loss. Ultimately, Christy is working to provide an atmosphere for families with children with hearing loss to come together to celebrate their achievements and share their experiences.

Casey Dandrea is an HHF intern studying journalism at Long Island University Brooklyn. For more on Charly’s progress, see Christy’s Instagram.

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Suffering After Sacrifice

By Lauren McGrath

Every Veterans Day, Hearing Health Foundation (HHF) celebrates the brave individuals who have served and sacrificed to defend our country. We are grateful to our active military members and veterans for their courageous protection of American values and freedoms.

As we honor those who have served in the U.S. Armed Forces, we acknowledge a tragic and troubling health problem. An astounding number of veterans—60% of those returning from Iraq and Afghanistan—live with tinnitus and noise-induced hearing loss. In 2017, the Veterans Administration reported 1.79 million disability compensation recipients for tinnitus and 1.16 million compensation recipients for hearing loss, the number one and two disabilities, respectively. In an HHF video about hearing loss treatment, Retired Army Colonel John Dilliard, Chair-Elect of HHF’s Board of Directors, explains, “The noise from repeated gunfire and high-frequency, high-performance aircraft engines takes its toll on the human hearing mechanisms.” Col. Dillard lives with both tinnitus and hearing loss following 26 years of service.

  John Dillard and fellow soldiers, Fort Irwin National Training Center, 1977.

John Dillard and fellow soldiers, Fort Irwin National Training Center, 1977.

Dr. Bruce Douglas, 93, remembers the moment his hearing became severely compromised while serving in the Navy during the Korean War. “On what was my 26th birthday, after pulling the trigger on the M1 rifle with no protection (none of us had any) multiple times, I was left with tendonitis in both knees—and worse, permanent, chronic tinnitus due to acoustic trauma. My hearing went downhill ever after, and every imaginable kind of sound and sensation has resulted from my tinnitus,” Douglas writes in the Fall 2018 issue of Hearing Health.

Hearing protection training must start as soon as one enters the military. But there is a misconception that hearing protection inhibits vital communication and mission readiness because hearing signs of danger is imperative to survival. “Soldiers want to be able to hear the snap of the twig and want to be able to be situationally. As a result, they are often resistant to wearing hearing protection,” Col. Dillard says.

Fortunately, sophisticated hearing protection technology does exist so that military personnel do not have to choose between protecting their ears or their lives. Examples include noise-attenuating helmets, which use ear cups to protect against hazardous sound, and Tactical Communication and Protective Systems, which protect against loud noises while amplifying soft ones.

The U.S. military continues to work toward safer hearing in the service. The U.S. Army has developed the Tactical Communication and Protective System (TCAPS), which are earbuds that dampen dangerous noises to safe levels using microphones and noise-canceling technology, while also providing amplification of softer sounds and two-way communication systems. An initiative by the U.S. Air Force called Total Exposure Health (TEH), meanwhile, focuses on overall health both on and off the job, will measure cumulative noise exposure over the course of 24 hours. These developments and others, which HHF applauds, are covered in greater detail in Hearing Heath’s Fall 2017 issue.

As greater preventative technology for our military becomes available, HHF remains dedicated to finding better treatments and cures for tinnitus and hearing loss to benefit the lives of millions of Americans, including veterans, a disproportionately affected group. We hope you will join us in remembering their sacrifices with gratitude and compassion.

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Measuring Brain Signals Leads to Insights Into Mild Tinnitus

By Julia Campbell, Au.D., Ph.D.

Tinnitus, or the perception of sound where none is present, has been estimated to affect approximately 15 percent of adults. Unfortunately, there is no cure for tinnitus, nor is there an objective measure of the disorder, with professionals relying instead upon patient report.

There are several theories as to why tinnitus occurs, with one of the more prevalent hypotheses involving what is termed decreased inhibition. Neural inhibition is a normal function throughout the nervous system, and works in tandem with excitatory neural signals for accomplishing tasks ranging from motor output to the processing of sensory input. In sensory processing, such as hearing, both inhibitory and excitatory neural signals depend on external input.

For example, if an auditory signal cannot be relayed through the central auditory pathways due to cochlear damage resulting in hearing loss, both central excitation and inhibition may be reduced. This reduction in auditory-related inhibitory function may result in several changes in the central nervous system, including increased spontaneous neural firing, neural synchrony, and reorganization of cortical regions in the brain. Such changes, or plasticity, could possibly result in the perception of tinnitus, allowing signals that are normally suppressed to be perceived by the affected individual. Indeed, tinnitus has been reported in an estimated 30 percent of those with clinical hearing loss over the frequency range of 0.25 to 8 kilohertz (kHz), suggesting that cochlear damage and tinnitus may be interconnected.

However, many individuals with clinically normal hearing report tinnitus. Therefore, it is possible that in this specific population, inhibitory dysfunction may not underlie these phantom perceptions, or may arise from a different trigger other than hearing loss.

One measure of central inhibition is sensory gating. Sensory gating involves filtering out signals that are repetitive and therefore unimportant for conscious perception. This automatic process can be measured through electrical responses in the brain, termed cortical auditory evoked potentials (CAEPs). CAEPs are recorded via electroencephalography (EEG) using noninvasive sensors to record electrical activity from the brain at the level of the scalp.

  Cortical auditory evoked potentials (CAEPs) are recorded via electroencephalography (EEG) using noninvasive sensors to record electrical activity from the brain.

Cortical auditory evoked potentials (CAEPs) are recorded via electroencephalography (EEG) using noninvasive sensors to record electrical activity from the brain.

In healthy gating function, it is expected that the CAEP response to an initial auditory signal will be larger in amplitude when compared with a secondary CAEP response elicited by the same auditory signal. This illustrates the inhibition of repetitive information by the central nervous system. If inhibitory processes are dysfunctional, CAEP responses are similar in amplitude, reflecting decreased inhibition and the reduced filtering of incoming auditory information.

Due to the hypothesis that atypical inhibition may play a role in tinnitus, we conducted a study to evaluate inhibitory function in adults with normal hearing, with and without mild tinnitus, using sensory gating measures. To our knowledge, sensory gating had not been used to investigate central inhibition in individuals with tinnitus. We also evaluated extended high-frequency auditory sensitivity in participants at 10, 12.5, and 16 kHz—which are frequencies not included in the usual clinical evaluation—to determine if participants with mild tinnitus showed hearing loss in these regions.

Tinnitus severity was measured subjectively using the Tinnitus Handicap Index. This score was correlated with measures of gating function to determine if tinnitus severity may be worse with decreased inhibition.

Our results, published in Audiology Research on Oct. 2, 2018, showed that gating function was impaired in adults with typical hearing and mild tinnitus, and that decreased gating was significantly correlated with tinnitus severity. In addition, those with tinnitus did not show significantly different extended high-frequency thresholds in comparison to the participants without tinnitus, but it was found that better hearing in this frequency range related to worse tinnitus severity.

This result conflicts with the theory that hearing loss may trigger tinnitus, at least in adults with typical hearing, and may indicate that these individuals possess heightened auditory awareness, although this hypothesis should be directly tested.

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Overall, it appears that central inhibition is atypical in adults with typical hearing and tinnitus, and that this is not related to hearing loss as measured in clinically or non-clinically tested frequency regions. The cause of decreased inhibition in this population remains unknown, but genetic factors may play a role. We are currently investigating the use of sensory gating as an objective clinical measure of tinnitus, particularly in adults with hearing loss, as well as the networks in the brain that may underlie dysfunctional gating processes.

2016 Emerging Research Grants scientist Julia Campbell, Au.D., Ph.D., CCC-A, F-AAA, received the Les Paul Foundation Award for Tinnitus Research. She is an assistant professor in communication sciences and disorders in the Central Sensory Processes Laboratory at the University of Texas at Austin.

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A Muffled Life

By Jim Lynch

A Tricycle Mishap

For a 5-year-old a tricycle is a mini Lamborghini. Whether this particular model belonged to my family or our next-door neighbor has long since faded in memory, but what made it especially attractive was fashioned to its handlebar: a rubber squeeze-bulb and silver metal horn. Jackie Gilroy and I took turns riding it between our houses for hours during the summer before I was scheduled to enter first grade. We were particularly fascinated by the sound of the horn, a noise we could make louder by using two hands to squeeze air into the metal chamber.

I can’t remember which of us made the suggestion, but one day we discovered that if we placed our ears next to the horn, the sound was louder still. Therefore, in the impulsive and thoughtless manner of children, we took turns blaring that explosive clangor into each other’s ears at point blank range for a good part of the afternoon. We laughed at our discovery and discovered that the effect lasted even longer, with ringing in our ears.

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When I woke the next morning and came downstairs, my mother was at the stove finishing scrambled eggs for my breakfast. As she put my plate before me, I saw her lips moving, but I heard nothing. I put my hands to my ears and began to cry as she tried without success to converse with me. Not only couldn’t I hear her, but I also couldn’t hear my own words, or even the sound of my crying. Overnight, I had become completely deaf.

Facing It

Over the next few days, some muted hearing gradually returned. After I informed her of my squeeze-bulb horn activity, she made an appointment for us with an audiologist. After explaining to him what I had done, and undergoing what passed for extensive testing in midcentury (I remember a series of tuning forks and having to turn my head at various angles and respond to his whispered questions), he informed her that I had permanently damaged the nerve endings at the higher frequency range of hearing in both ears. I remember him telling her that what had happened to me was akin to a soldier’s hearing when a grenade goes off in close proximity. While I didn’t suffer physical injury, the hearing loss was the same.

Even if there were hearing aids available during that era, two things became readily clear: my family would not have been in a financial position to afford them, and, given the type of hearing loss I had sustained, they wouldn’t have helped. Whatever the quality or degree of auricular attenuation I had sustained, it was permanent, and would last for the rest of my life. At five years of age, however, I was simply happy to have regained a measure of hearing. Whatever consequences suffered by Jackie Gilroy are lost to memory.

At that point in my young life, I had little trouble understanding my parents, siblings and friends who were in close proximity. They sometimes had to get my attention if my head were turned (my brothers would often yell, “Hey Beltone!”), but face-to-face conversation was possible. Even so, my parents decided to postpone enrolling me in first grade that September, with the hope that things might somehow improve before I would need to function in a classroom environment.

Starting first grade a year later, I began a long auditory adjustment that paralleled any and all social interaction. My hearing difficulty often appeared to teachers and fellow students as indifference, disrespect or stupidity. High-frequency loss also made it impossible to hear the syllables of some words, and therefore difficult to pronounce them as well.

The “ed” on the past tense of “ask,” for example completely disappeared. Sibilant syllables vanished from spoken words, and the susurration of whispers made them indecipherable. Embarrassment and mockery are stern but effective teachers, however, and they provided remarkable motivation for a trial-and-error approach to the demands of a wider world.

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And Faking It

I soon ascertained that there were many compensatory methods to bring to bear on my degraded hearing. I quickly learned, for example, that the first hint of what others were saying lay in their facial expressions. A frown, scowl or smile provided a starting point for what was to come.

Tone of voice was also a powerful indicator. A flat, staccato grouping of words coupled with a stern expression were causes for apprehension, while a soft, lilting tone combined with an open face often indicated harmony or agreement. If a speaker’s inflection turned up at the end of his sentence, he was likely posing a question.

I further adapted to a system of filling in the gaps when some of the words in a sentence went unheard because of distance, volume or pronunciation. “In what____ was the _______Armada ________ by Great _______?” From the back of the class, such an obvious question (upward inflection at end of sentence) could be understood in sufficient time by a student with hearing loss who had read the assigned history chapter. Those strategies worked with a modicum of success in a classroom where one person spoke at a time. In a noisy environment, however, sounds grew more remote and understanding more problematic.

When as an adult I had an extensive and more sophisticated evaluation done by an audiologist, I discovered that my hearing levels were 70% of normal in the left ear, and 72% in the right. Because of years of adapted strategies, however, my range of understanding registered in the low 90% level for both ears in a quiet, isolated environment.

Lingering Difficulties and Treatment at Last

Nevertheless, song lyrics and movie dialogue continued to pose problems. Because the usual strategies often failed in such circumstances, I often relied on imagination to provide meaning. With resourceful creativity, I used the melody of songs, and the tone of cinematic dialogue, as well as body language of the actors, to provide sufficient clues to the overall context of songs and movies. I sometimes think that my imagination provided better lyrics and dialogue than the lyricist or scriptwriter.

Not until 2005 did technology become available to augment my adaptive methodology. The devices I now use improve my hearing marginally, but I still rely on a lifetime of learned maneuvers to interact with others. Although the sounds of previously difficult sibilant syllables became somewhat crisper, other problems remain or were created.

A moderate wind sounds like a typhoon when it blows over the device’s microphone. In addition, ambient noise levels can still totally negate any level of discernment. At a social gathering such as a wedding reception, for example, the murmur and babble of guests make understanding people directly across a table hit-and-miss. When the band or DJ begins, I must cease conversation altogether, except to respond to the person to my immediate right or left, and then with considerable difficulty.

In the classroom, my disadvantage created a different approach to interaction with students. Because I was fortunate to teach in an atmosphere of deference and tranquility, the majority of conversations with students proceeded nicely. Sometimes, however, soft-spoken or rapid-speaking students, or those in the rear of the class could pose problems. If a request for a repeated question or comment failed to generate clarity, years of learned compensatory techniques usually facilitated sufficient comprehension.

It Made Me a Better Teacher

In retrospect, I suspect that my auditory deficit, and the changes it wrought, made me a better teacher than I would have been with typical hearing. Because I had to utilize alternate methods and techniques (with a visible keenness of focus) to interact with students, my interest in their opinions and evaluations must have conveyed an unusual intensity. As I strained to comprehend their questions, concerns and comments, my physical demeanor emphatically registered the genuine value I placed on understanding their questions and comments in class discussions.

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While a reduction in the ability to hear does not rise to the level of a significant physical disability, it changes the manner in which one must approach life. Such changes, although onerous, can also foster unforeseen advantages. My career as an educator was predicated on an adaptive approach to classroom procedure and management. Without a youthful hearing injury, I may not have gravitated toward teaching at all, or have enjoyed four decades of participation in that noble profession.

Jim Lynch was a high school English teacher for nearly four decades in the Wilkes-Barre, Pennsylvania area, as well as an adjunct English instructor at area universities and a community college. In retirement, he resides in Fleetwood, Pennsylvania with his wife of 51 years and two cats.

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The Bridge Between Two Worlds

By Vicky Chan

Disability rights attorney Jared Allebest was born with a bilateral profound hearing loss. He was diagnosed at age 1 and fitted for hearing aids a year later. Today, Jared uses both hearing aids and ASL to communicate.

The son of a lawyer, Jared was determined to follow in his father’s footsteps and his hearing loss never deterred him. Throughout his education, he remained inspired by his favorite elementary school teacher, Ms. Marquardt, who taught him one of the most invaluable lessons: Having a hearing loss isn’t a barrier to success. “[Hearing loss] has affected my outlook to fight harder and to push myself to accomplish the things that I want to do in my life,” Jared explains.

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After his graduation from Thomas Jefferson School of Law in 2009, Jared founded a law firm that advocates for people with hearing loss and speaking disabilities. The firm focuses on empowering their clients through education, advocacy, and lobbying. He works with clients with both typical hearing and hearing loss and takes on cases relating to disability rights or discrimination, as well as employment, marriage/divorce, and criminal law.

Jared admits that he faces auditory challenges in his profession. During trials, he has to be exceptionally attentive to all parties. He also receives assistance from an ASL interpreter in the courtroom so he doesn’t miss anything being said.

Despite some difficulty, Jared believes that his hearing loss is an advantage. His clients are more comfortable with him because they know he can empathize with them. People listen carefully when he speaks about issues concerning hearing loss. “By fighting for the rights of those who live with hearing loss, I am advocating for myself as well. I think of myself as the bridge between two worlds,” Jared says.

Jared’s strong reputation as a dedicated lawyer stems from his sincerity and passion for helping others with legal issues that are deeply personal to him. The most rewarding part of his profession is knowing that his clients are satisfied with his commitment.

Jared’s advocacy for the hearing loss community outside goes beyond the courtroom. He is the former chairman of Loop Utah—an advocacy group dedicated to educating people in Utah about the benefits of loop technology. He currently serves as a community representative on the Advisory Council to the Utah Division of Services to the Deaf and Hard of Hearing (USDB Advisory Council).

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Of course, Jared knows he can’t be an advocate for all people with hearing loss, as much as he would like to be. He can’t be the connection between the legal world and the hearing loss world for everyone. Jared maintains that the most important part of living with hearing loss is effective self-advocacy. “Being assertive about your needs will help you to hear better, be more productive, and be happier.”

Jared lives and practices law in Utah. He is a participant in HHF’s Faces of Hearing Loss campaign.

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Breaking The Silence

By Joe Mussomeli

If there's one thing my brother, Alex, and I love, it’s spending time with our cousins in Maryland. We’ve been visiting them for years now—each stay more fun than the last.

These visits have left us all with happy memories of holding Mario Bros. competitions on the Wii, playing tag downstairs, watching funny movies, and, most importantly, telling stories before bed. When we were little, we used to tell stories to each other all the time. Together we’d create ridiculous parodies of fairy tales taking place in obscure settings, including our own versions of Jack and the Beanstalk and The Jungle Book. We loved telling these stories.

One time, we finished telling our stories and readied ourselves for bed. As usual, my brother Alex took his hearing aid and cochlear implant off in preparation for sleep. After this, our cousin Lara, who was only five years old at the time, asked Alex a question. When he didn’t reply, she repeated her question. To her confusion, he didn’t say anything once more. Lara then called for my mom and asked why Alex wasn’t answering. My mom explained to Lara that when Alex takes off his hearing aid and implant, he cannot hear anything.

“He can’t hear anything?” Lara asked.

“He can’t hear anything,” my mom confirmed.

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Lara was silent for a few seconds before she said something; “You know, it’s challenging, but maybe it’s peaceful at times, not hearing a sound. Maybe it’s relaxing for him.”

Though our visits to Maryland are enjoyable, Alex’s hearing loss has presented challenges for our family when we go swimming with our cousins. When Alex was little, he was unable to wear his hearing devices while swimming, for they were not waterproof. This meant that he could not converse with our cousins in the pool; he couldn’t join in on the conversation in a meaningful way. He could talk, but he couldn’t respond. He could swim with them in the pool, splash water in their eyes, and laugh along with them. He just couldn’t hear his own laughter.

We all worried that Alex would get hurt while swimming without his hearing technology.  My cousins and I tried our best to help Alex when we were in the pool. We would always swim near him, making sure he was safe. I, in particular, would answer questions anyone was trying to ask Alex when he was in the water. I hope I did my best to help him out during these early years.

All of this changed when something marvelous entered our lives, a waterproof cover for his cochlear implant that makes it usable for swimming. This has made swimming so much better for Alex. He can now hear in the pool and can socialize with others. He can talk with our cousins, splash them with water, and hear his own laughter. Now, whenever someone asks him for his name, he can confidently say, “I’m Alex, what’s your name?”

Joe Mussomeli is an upcoming 10th-grade student who lives in Westport, CT. His younger brother, Alex, has been featured in Hearing Health magazine and is a participant in HHF’s “Faces of Hearing Loss” campaign.

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A Fast Track to Hearing Damage

By Andrew J. Guralnick

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Millions of commuters using the New York City subway system know it can be noisy, but just how loud is it? As a 2018 Hearing Health Foundation (HHF) intern, I set out to measure the danger that the NYC Metropolitan Transit Authority (MTA) subway system presents to riders and employees.

I found that the system significantly breaches the threshold of what is safe for our ears. To protect hearing, both the U.S. Environmental Protection Agency and the World Health Organization recommend an average exposure limit of 70 decibels (dB) over the course of 24 hours. But what we measured exceeds that limit: Our samples show the average noise levels on all subway platforms and on all subway rides (inside subway trains) is between 72.5 and 76.5 dB and between 74.1 and 75.8 dB, respectively. And, with maximum readings actually as high as 119 dB on platforms and 120 dB on rides—based on actual recorded data within the sample—the NYC subway is likely an auditory minefield. (See hhf.org/subway for full data.)

Using our data’s sample averages, I determined ranges as to what the actual averages are on all subway platforms and rides through the MTA system. Based on the data, we are 99 confident about our results.

Collecting and Analyzing

From January to August 2018, three data collectors used Decibel Meter Pro, a smartphone app on iPhones and an iPad to collect 120 samples from platforms and rides. All 60 platform samples were equally represented at five minutes each. The 60 ride samples were assigned random recording lengths from 10 to 30 minutes. Samples on Saturday and Sunday or between 11 p.m. and 4:45 a.m. on any day were excluded. Random sampling was utilized as much as possible to help ensure generalizability on behalf of all platforms and rides.

The analysis examined potential harm to hearing from loud noises on subway platforms and loud noises during subway rides. For platform noise, the main variable is the number of trains that pass; for subway ride noise, the main variable is the number of local stations the train passes. We also investigated the number of seconds the subway noise level reached 75 dB or higher.

When measuring subway rides, we noted train travels between Manhattan and another borough or vice versa; whether a train runs above ground; whether the sample was collected during rush hour; and whether a local train ever becomes an express train, with fewer stops.

The statistical method of multiple regression was used to predict dangerous noise exposure on both platforms and rides. We can predict that each train that enters or leaves a platform will expose a rider’s ears to 16.53 seconds of noise at 75 dB or higher. For example, if a rider waits at a platform where two trains come and go before their train arrives, that would be a predicted exposure of 82.65 additional seconds of noise at 75 dB or higher.

We can also predict that each subway stop that is passed will expose a rider’s ears to 36.06 seconds of noise of 75 dB or higher. For example, if a rider passes 10 local train stops on their trip, the predicted exposure of noise at 75 dB or higher is 360.60 additional seconds—or 6.01 additional minutes.

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Cumulative Effect

HHF’s recommendation for commuters, MTA staff, and platform retailers such as newsstand operators is simple: Wear ear protection. MTA staff and platform retailers are at elevated risk given the hours they spend underground and on the trains. The tendency for many commuters to block noise by raising the volume of their headphones is not a helpful approach and could in fact damage hearing even more.

The subway is merely only one of many sources of daily noise. “Noise-induced hearing loss can result from a single, sudden noise event and from constant exposure to loud noises that has a cumulative effect (not unlike sun exposure) and can lead to related negative health effects when unknown and untreated,” says Lauren McGrath, HHF’s marketing manager.

The MTA appears aware of the issue of subway noise. The newly built Second Avenue subway line uses effective noise-reduction measures such as “low vibration tracks and sound absorbing panels.” We hope the MTA will continue to use these quieter, low vibration tracks when making subway and station upgrades, especially since they are more cost-effective than traditional wooden tracks.

2018 HHF intern Andrew J. Guralnick is pursuing a master’s in public administration at Baruch College in New York City.

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Painting for a Cure

By Nicolle Cure

My art is the fuel that ignites my passion for helping others. I use my art as a tool to create so that I can support the causes I believe in. Throughout my life, I have created several collections, for the most part biographical. To date, I've been blessed to have the opportunity to collaborate with animal welfare campaigns as well as education and health research initiatives. I am now proudly raising awareness about a particular cause that is dearest to my heart—hearing loss and vestibular (balance-related) disorders—after experiencing these conditions myself.

  Nicolle painting in her studio. Credit: Lia Selfridge

Nicolle painting in her studio. Credit: Lia Selfridge

On August 4, 2017, I woke up and noticed that the right side of my head was numb. I felt a strong pressure in my right ear and couldn’t hear anything as my ear felt blocked and full. It was really scary and very sudden.

Since that day, I have been in and out the hospital trying to decipher what is wrong with me and how to cure it. My first audiology appointment showed a profound hearing loss in my right ear, and after steroids injected into the middle ear for two months, I was able to recover the ability to hear low frequencies. However, the high frequencies only improved to severe (from profound), which is why I now suffer from tinnitus and I am extremely sensitive to environmental sounds.

My hearing loss was only the beginning. During the initial months, I also suffered from BPPV (benign paroxysmal positional vertigo), debilitating vertigo episodes, chronic migraines, constant nausea, and dizziness. My balance was completely off and I swayed to the right when walking. It felt like I was walking on quicksand. Another symptom that persisted for months was chronic fatigue, to the point that I could not get out of bed on certain days. My body felt heavy as if I had a slab of concrete on top of me.

These “invisible conditions” can really affect patients an emotional level. I was completely isolated from the world, I didn’t want to see anyone, and I avoided phone calls and going out. I’ve always been a very independent person and the fact that I couldn’t do anything or go anywhere made me feel frustrated most of the time.

My boyfriend Felipe, a communications professional and music producer, has been the greatest companion, helping me thrive and heal with his patience and love, and for that I am truly grateful. We share a passion for music and going to concerts, but from the time of my hearing loss I avoid loud places and crowds in general. I know music to him means as much as art to me, so I now wear custom musician’s earplugs. I am also investigating a hearing aid for my right ear, which my audiologist recommended after a recent tinnitus assessment to manage my tinnitus and sound sensitivity. Vestibular rehab therapy helped me regain my balance, as I had difficulty walking or even just standing still.

And of course my art has been my most powerful coping mechanism. While I am in the process of creating, I can focus better and forget about my symptoms. Painting makes me ignore my tinnitus even for a short period of time.

This experience has given me the opportunity to create awareness about invisible conditions. It is a fuel that continues to ignite my passion for the arts and for helping others. It has given me a sense of purpose—I truly feel the need to wake up and create something beautiful to deliver a powerful message of positivism in spite of my symptoms.

In “The Colors of Sound” painting collection, I am trying to capture emotions and moods in sound. Using his recording equipment, Felipe showed me the range of frequencies that I was not able to hear anymore. It was a bizarre experience to be able to see the sound waves and frequencies that I could no longer hear. These ink paintings replicate the energy and movement of what was now missing.

Behind every invisible illness there are wonderful individuals with the will to thrive and heal. Helping others has been incredibly therapeutic for me, and I gained so much support from people, too. I want to create a space for dialogue so people can be open about their conditions and find treatments and relief and know that they are not alone in this journey.

Nicolle Cure is an artist based in Miami. “The Colors of Sound” appeared at Art Basel in Miami Beach (December 2017–February 2018).

A better quality of life for Nicolle—and so many others—is dependent on research funding for HHF’s groundbreaking scientific programs.

Please, if you are able, make a contribution to the research that will someday make it possible for Nicolle and millions of others to reclaim their independence.

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The Miracle of the Cochlear Implant

By Barbara Sinclair

  Barbara and her husband, Charles, who also has a hearing loss, in 2004.

Barbara and her husband, Charles, who also has a hearing loss, in 2004.

My mother didn’t realize I couldn’t hear until one afternoon when I was about 3 years old. I was happily playing on the floor with my younger brother. Suddenly I glanced up and saw Tex looking at Mother, who had clapped her hands. Not hearing any noise, I didn’t respond. Frantic with worry, Mother called Daddy telling him I couldn’t hear. She then took me to the doctor. No wonder I was slow in talking! Sound meant nothing to me. I didn’t know that I needed to talk to express feelings.

A teacher trained at St. Louis’s Central Institute for the Deaf taught me how to speak and read lips at home in Cleveland. I never heard a sound until I got my first hearing aid around age 9. The earliest audiometric evaluation I still have is from 1984, when I was 55, and it showed a profound hearing loss in my right ear. My left ear was even worse, termed “dead.” With training in speaking and lip-reading (speech-reading), I stayed in a mainstream school with the help of a hearing aid, although I really depended on lip-reading to get by. The hearing aid gave me a sense of being able to communicate, but it didn’t help much when it came to understanding speech.

I imagine anyone born with a hearing loss doesn’t always understand why they can’t hear. Many times I had wondered this myself. My doctors are also unaware of the cause. I speak a little differently, with a metallic sound and slight accent, sometimes accenting the wrong spots as I speak. However, this did not impede school or, later, work. After I graduated from Arizona State University, I held jobs in bookkeeping, the library, and human resources.

Sounds such as shouting, banging, ringing, and clanging all sound the same to me. What does a ticking clock sound like? Tap-tap, or click-click? Or running water? To me, these sound the same. I can’t hear the wind rattling the window. I feel it. I can’t hear the fury of a rainstorm. I feel it.

It’s hard for me to detect changes in speech tones or pitch, or to tell a low voice from a higher one. I read that a child’s laughter is like the delightful rippling of a water stream. I can’t identify that sound. But even though I can’t enjoy music or follow group conversations, there are some advantages to not hearing—I sleep without any interfering noises.

In 2001, our audiologist mentioned cochlear implants to my husband Charles, then age 72, who also has a hearing loss as well as being blind from retinitis pigmentosa. I researched cochlear implants and found this description from ABC News. It dates from 2001 but is still accurate today: “For those with normal hearing, sound enters the ear, triggering hair cells in the cochlea, a spiral tube filled with fluid. Those excited hair cells send information to the hearing nerve, which sends signals to the brain, allowing us to hear.

“But, if deaf people have damaged hair cells in their cochlea, an implant can also do the same work. With an implant, sound is picked up by a tiny microphone connected by a cord to a small box outside the ear. The box turns sound into a signal—transmitting it through the skin, straight into the skull. Electronics in the skull send the signals straight to the hearing nerve, bypassing the cochlear hair cells that don’t work.”

We went to see Wesley Krueger, M.D., an otolaryngologist in San Antonio. After a series of tests, Dr. Krueger told Charles that his hearing wasn’t actually severe enough to be a candidate for an implant. He was stunned for a minute, and then asked the doctor if there was a possibility for me to get an implant. Then it was my turn to be stunned.

Weeks later, following my own series of tests, Dr. Krueger came into the room, grinning, and announced, “You are a candidate for a cochlear implant!” I was speechless as he showed me the components of “the bionic ear”: the external hearing aid-like processor and transmitter; the receiver under the skin that connects to electrodes; the magnet that holds the implant in place on the skull.

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I had the surgery a month later, when I was 72 years old. A week after the bandage from my right ear was removed, I felt dizzy, but there was almost no pain at all. I then realized that the implant made me unable to hear with my hearing aid. Whatever hearing I had was gone.

For 30 days I agonized whether I’d be able to hear. The incision behind the ear must heal for that period before the bionic ear can be activated. Then, finally, activation day came—and was successful! There were beeps and squawks, but I could hear! Relief enveloped me as I progressed through the programming of the device. Sounds were distorted and muddled, but they were all new to me.

It has been 17 years since the implant. My device has been reprogrammed again and again until clarity reached its peak. I still don’t understand speech perfectly, but I do hear sounds I had not heard before: a ticking clock, running water, a humming car motor—and yes, the laughter of our four grandchildren.

Barbara Sinclar lives in Texas. She is a Faces of Hearing Loss participant

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Noise: Exposed

By Nadine Dehgan

Aboard my noisy flight to the Hearing Loss Association of America (HLAA) Convention in June, I couldn’t help but reflect upon loud sounds—and what can be done to reduce our exposure.

I’d recently learned that the word “noise” is derived from “sea sickness” or “nausea” in Latin. Noise has literally been associated with poor health outcomes for thousands of years.

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Synonyms for “loud” include “ear-splitting” and “deafening.” In fact, vibrations from loud noises travel through the eardrum to reach our inner ear, where sensory hair cells change them into electrical signals to be interpreted by the brain. Hair cells, however,  come in limited supply. Humans are typically born with 16,000—and when these cells are damaged by noise, age, ototoxic drugs, or other factors, the brain’s ability to communicate with the ears is significantly weakened, resulting in permanent hearing loss.

Concerned about my fellow plane passengers’ hair cells, I opened my phone’s decibel (dB) measuring app, which indicated the maximum noise level after takeoff was 92 dB, while the average was 83 dB. The app also pointed out that this dB level is equivalent to that of alarm clocks. While this doesn’t seem uncomfortable, it’s actually not recommended for periods over two hours. I’d come prepared with both earplugs and noise-canceling headphones—which I limit to 60 percent of maximum volume in accordance with the World Health Organization (WHO)’s recommendation. But not everyone taking flights comes prepared for the dangerous levels of noise inside the plane.

The National Institutes of Health (NIH) states noise greater than 75 dB can harm hearing, and in 1974, the Environmental Protection Agency (EPA) recommended that sound exposure should remain at or below 70 dB to prevent noise-induced hearing loss. Sudden loud noise—such as from blasts, gunfire, firecrackers, and bullhorns—also can cause hearing loss with levels reaching 165 dB! This is why so many veterans return with hearing loss and tinnitus. Tragically, they are the two most common disabilities for those who serve.

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And yet our society glorifies noise. Two confessions explain my frustration. The first is I love to listen to love songs from the ’90s and my children think these songs are current hits. My second is when my kids are not in my car I often listen to classical music, but once in awhile I listen to current hits. One station’s tagline actually is “Ear-Popping Music.” I couldn’t believe that damaging eardrums was being advertised as a good thing! My youngest daughter, Emmy, had many eardrum ruptures—from infections, not noise—and she truly suffered. My anguish as a parent watching my baby and then toddler in pain was nothing compared to the pain she endured with no understanding of why.

How can we be okay with hearing loss and ear damage advertised as a positive experience? No one would advertise skin cancer from excessive sun exposure as a perk of a beach vacation. Nor would a beverage manufacturer tout soda’s negative impact on dental health.   

It is my wish that one day we take the real risk of hearing loss seriously and recognize it for the epidemic that it is. Experts say approximately one in five American children will have permanent hearing loss (largely noise-induced) before reaching adulthood. University of Ohio scientists report that even mild hearing losses in children can cause cognitive damage that would typically not occur until at least age 50. This is horrifying.

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Still, we surround our children with damaging noise. Birthday parties, movie theaters, weddings, and family celebrations can blast noise exceeding 115 dB. Football stadiums, hockey arenas, exercise classes, and music concerts have clocked in at over 140 dB, which can cause irreversible hearing loss—whether sudden or progressive damage—in minutes.

Recently, a friend told me she complained of high noise levels (105 dB) to her daughter’s dance studio. Instead of offering to turn down the volume, management told her that she could leave the class. While her daughter can no longer attend dance class, my friend has the consolation of knowing her child is safer. My thoughts go to the employees of fitness centers, stadiums, restaurants, bars, and other commercial establishments whose ears are constantly assaulted.

Before becoming CEO of Hearing Health Foundation (HHF), I didn’t appreciate the dangers and consequences of loud sound. I now know that even a mild untreated hearing loss can lead to social issues including isolation, depression, and poor academic performance in children. In adults, the stakes are also high, with untreated hearing loss bringing the risks of mental decline, falls, and premature death.

Hearing loss can be mitigated by technology including hearing aids and cochlear implants. While these treatments are beneficial and life-saving, HHF is funding research toward permanent cures. Birds, fish, and reptiles are all able to restore their inner ear hair cells once damaged—but mammals including humans cannot. HHF funds a consortium of top hearing scientists through our Hearing Restoration Project (HRP) who study how other species are able to regenerate their hearing in order to apply this knowledge to humans through a biological cure.

As the plane descended toward Minneapolis, my ears popped, but I know the minor discomfort can’t compete with what Emmy experiences. As the mother, sister, daughter, and granddaughter of individuals with hearing loss, I remember my two biggest wishes: for society to place a greater value on hearing protection, and for HHF to continue to support researchers on their quest to treat and cure hearing loss and related conditions.

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