Hearing Loss Resources

Comfortable

By Joe Mussomeli

Being uncomfortable can be nerve-wracking, strange, and sometimes scary. For my brother, Alex, 14, being uncomfortable is all of these things. Born with a hearing loss, Alex has felt uncomfortable so many times in his life it’s impossible to count them all. He recently found himself in an especially uncomfortable situation when he was invited for a swim and sleepover at a friend’s house.

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To most teenagers, these activities aren’t uncomfortable; they’re fun. But when Alex received his invitation, he was overcome by anxiety related to his hearing loss. He worried he’d take too long to change into his swimming clothes, which include a shirt that attaches to his waterproof cochlear implant (CI). He dreaded others seeing him wear this. He feared he wouldn’t understand every word the other kids said in the pool. Above all, he was nervous the other kids would distance themselves from him because he was different.

Swimming wasn’t even the most distressing part. It was the mention of a sleepover that troubled Alex most. Just the mention of the word “sleepover” made his stomach tie into a knot. Every night, he removes his CI and hearing aid. He places the devices in a dry and store dehumidifier box, powers on the box, and then, finally, goes to sleep. Carrying out this routine at a sleepover would be, in theory, extremely difficult. Alex would have to keep his hearing devices on while talking to his friends at night. At the conversation’s end, Alex would have to take off his devices, but if it resumed, he would have to go through the hassle of putting his devices back on, or he would have to be left out. The whole situation would be unconventional and nerve-wracking for him. Essentially, it would be uncomfortable.

Alex was so uncomfortable that he almost declined the invitation until our dad pointed him in a different direction. The morning before the sleepover, Alex asked Dad if he should go to his friend's house. My dad told him that he should. Alex was quiet for a moment before he poured out all of his anxiety. He told him about how nervous he was and all of his other discomforts. Dad responded, “I won’t tell you what to do, but I will tell you this: Do you want to be uncomfortable your whole life, or are you willing to take a chance?” He left Alex to think over these words.

In the end, Alex didn’t go to the sleepover, but he went for a swim. Yes, it did take him longer than the other kids to change for the pool, and yes, he didn’t hear every word his friends said in the pool. But he still went, he dove into a pool of discomfort, dealt with it, and to his surprise, he had a bit of fun. He texted my dad an hour later asking if he could stay until at least 9 PM. My dad replied with three words: “If you’re comfortable.” Alex replied with two: “I am.”

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Your Concerns About Cochlear Implants, Answered

By René H. Gifford, Ph.D, CCC-A, and David S. Haynes, M.D., FACS

“If you qualify for a cochlear implant (CI) but do not have one, please indicate reasons you have not pursued.”

This question was one of three dozen on hearing conditions posed in Hearing Health Foundation’s 2017 Reader Survey, which was administered through the pages of this magazine, online, and also with Hearing Loss Association of America, through their magazine and online. More than 2,300 people responded to the survey. Those who responded to the CI question above gave the following answers, and they were able to check off as many as applied. In order of popularity, the responses were: 1) not convinced of improvement, 2) surgery complications, 3) waiting for biological cure, 4) concerns about sound quality, 5) cosmetic, and 6) fear of discomfort.

Although “other” with a fill-in option was offered, age did not appear to be a primary concern. In fact, many older adults with severe to profound hearing loss whose hearing aids are no longer are beneficial have found success with CIs, as demonstrated by Barbara Sinclair (page 20), who received an implant 17 years ago at age 72, and our cover story author Bruce Douglas (page 6), who had implantation surgery at age 91.

Part of the survey’s purpose is to better understand the needs of our community of readers and supporters, and so, as cochlear implant surgeons, we wanted to address these concerns.

Source: University of Illinois Hospital

Source: University of Illinois Hospital

Not convinced of improvement

All CI centers, including ours at Vanderbilt University Medical Center, perform extensive presurgical testing to determine if a CI is the right option for a patient, versus the continued use of hearing aids. The testing, based on data and experience, answers this question with an incredible degree of accuracy. Our goal is to reach a level of hearing that dramatically outperforms the best hearing aid outcomes for a given individual. Expectations are much higher than this, however, and it is extremely rare for a patient who is wearing their implant full-time not to experience much better preoperative hearing performance. The benefit has been so pronounced that Vanderbilt and other CI centers are working to expand implantation criteria so that this technology reaches people with milder forms of hearing loss.

Surgical complications

Cochlear implantation has one of the most favorable risk–benefit ratios of any surgical procedure in the U.S., offering significant communicative benefit while incurring little risk. Our center performs nearly 300 implants per year, and we monitor and track all procedures, outcomes, and complications. As with any operation your surgical team will provide a list of potential complications in order to be comprehensive, but the actual incidence of CI surgery complications ranges from under 1 percent to 3 percent. If any do occur, they are considered minor and temporary, such as postoperative taste disturbances and dizziness. At most CI centers, implantation is completed as an outpatient procedure and generally performed in 1 to 1.5 hours. We recently completed cochlear implantation on a 96-year-old patient who went home on the same day of surgery.

Waiting on a biological cure
The field of hearing restoration through hair cell regeneration—some of which is being conducted by HHF scientists, through the Hearing Restoration Project—is still in its earliest phases. While there have been exciting advances in gene therapy, current technology via cochlear implants can provide people with severe to profound hearing loss immediate access to sound, and all the benefits that this brings. In addition, improved success with CIs is linked to implantation that occurs closer to the onset of hearing loss, as auditory pathways in the brain need to be stimulated or they weaken. Otherwise the resulting permanent changes in the brain’s auditory centers may limit the ability of a patient to hear, even with a perfectly intact cochlea.

Concern about sound quality
Despite CIs being a mechanical device, the voice sound quality has the potential to be no less electronic sounding than that from a telephone, computer, or television. Often the abnormal sound is due to the stimulation of an ear that hasn't heard for many years (or an ear that has never heard). If this occurs, it typically dissipates with continued use of the CI and the stimulation of auditory pathways. Signal processing technology also continues to advance at a rapid rate, allowing for personalized programming for the best hearing outcomes, and—especially with any neural changes with age—programming is important to do at regular intervals.

Cosmetic
The thin internal portion of the CI is designed to sit flush with the skull and is not visible. The visible external components (the battery, sound processor, microphone, and transmitting coil) mostly fit behind the ear, not much larger than a standard behind-the-ear hearing aid. The latest sound processors are self-contained in a single unit about the size of a half dollar coin. These “off-the-ear” processors do not have an over-the-ear component, but rest directly over the magnet that is behind the ear and within the hairline. Eventually we expect that all implanted systems will be compatible with these smaller, off-the-ear processors, and nanotechnology and battery miniaturization will further reduce processor size. (And, the
boom in wearable consumer technology makes visible devices even more mainstream.)

Fear of discomfort
Implantation incisions behind the ear heal quickly, and the drilling of the bone required to place the
implant is a simple mastoidectomy. It is a component of most ear procedures and is not painful. Our center performs over 1,200 mastoidectomies per year across various different ear procedures. Postoperative discomfort is a rare complication and easily managed with over-the-counter medications such as acetaminophen (Tylenol).

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Do You Qualify?
If you have a hearing loss that prevents you from talking on the phone without visual cues (such as needing video calls or caption calling); are unable to understand television programs without closed captioning; and/or are actively avoiding large group gatherings for fear of conversational difficulty, talk to your hearing healthcare professional to see if you may be a CI candidate. CIs are the most successful sensory restoration prostheses to date and have been successfully placed in more than half a million individuals worldwide. The wonders of this technology vastly improve hearing, speech understanding, and overall quality of life.  

René H. Gifford, Ph.D, CCC-A, is a professor in the department of hearing and speech sciences with a joint appointment in the department of otolaryngology at Vanderbilt University, Tennessee. She and HHF medical director David S. Haynes, M.D., FACS, direct the Cochlear Implant Program at the Vanderbilt Bill Wilkerson Center.

This article also appeared in the Fall 2018 issue of Hearing Health. For references, see hhf.org/fall2018-references.

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Making Friends and Influencing People

By Kathi Mestayer

Lorrie Moore, the author of “Who Will Run the Frog Hospital?” was in town in Williamsburg, Virginia, giving a reading at Tucker Hall at the College of William and Mary. My friend Susan had invited me, and I actually remembered the author’s name and knew that book was somewhere on my shelf, so I said yes.

My husband Mac had read the book, and was sure I would like it. I managed to find it on our jumbled bookshelves, which are kind of in alphabetical order (for fiction, at least). And it was short, only 147 pages! Before long, I realized that I had already read it, too. Not because I remembered anything, mind you, but because my marks and scars were present pencil lines in the margins, and a few dog-eared pages. Mac never marks up a book, or dog-ears the pages, and it drives him crazy when I do. So, it’s usually easy to tell whether I’ve read a book. In this case, I was probably walking that fine line with my fine lines.

I got 33 pages into the book, and it was lively stuff. One passage I had circled (in ink!) was, “She inhaled and held the smoke deep inside, like the worst secret in the world, and then let it burst from her in a cry.” I love revisiting a book, like a stone skipping over water, hitting the high spots thanks to my notes.

So when the day of the reading arrived, I went to listen to Lorrie Moore read her favorite passages in her own voice.

Wishful Thinking

When I got to the lecture hall, I sat by Susan, who was fortunately in the second row, near the aisle. Someone introduced Lorrie Moore. I couldn’t hear most of that, but it didn’t really matter. Then she got up to read, holding a big, thick book (her latest), with a microphone clipped to her lapel.

I couldn’t hear a word of it. It seemed as though she was muttering softly, but I’m not a good judge of that. I leaned over and whispered to Susan that I was having trouble hearing and was going to sit in the front row. Well, Susan outed me immediately, and informed the guy who had introduced Lorrie that she wasn’t audible. While I tried to surreptitiously move to the very center of the front row, he asked Lorrie to hold the lapel mic in her hand, so it could be closer to her mouth.

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She did that for a few minutes, but it got awkward when she needed to hold the book, too. And when she held the mic in her hand, it was so close to her mouth that her speech was distorted, with the P’s and T’s sounding like balloons popping. Tiny balloons, but enough to muddy her speech. For me.

So, at the suggestion of a young man on my right, she put the mic back on her lapel, but closer to her face. She asked, “Can everyone hear me now?” I didn’t turn around to see the response behind me, but it was clear that she got some no’s because she started playing around with the mic and saying, “How about now?” And, “Now?”

That was when one of the professors leapt over the front two rows, got on the stage, took the big, regular-mic holder (which was empty), bent it around to the front of the lectern, and clipped the tiny lapel mic to it. Okay. It was closer to her mouth, and she could use her hands for other things.

Let the reading begin. Again.

This time, she read for about 20 minutes, and I still couldn’t hear clearly enough to know what she was mumbling into the mic, with the P’s and T’s popping again due to its proximity to her mouth. I sat there patiently, not wanting to be disruptive again, and thought about other things, in between the audience’s intermittent chuckling. To my credit, I did not get my phone out to check my email.

After she was done, and the Q&A period started, I slunk out of the room, as quietly as possible. Others were doing the same, so I felt a little less rude. The next day, I got an apologetic email from Susan.

Not Just Me

A couple of days later, I was in a gift shop downtown, and a young woman behind the counter asked if I had been at the reading the other night in Tucker Hall. I said yes. Turns out, she was sitting right behind me. When I mentioned that I had a really hard time hearing in that space, she replied, “Oh, I HATE that room!  It’s the worst one on campus! I can never hear in there.”

The good news is that, the next time Susan invited me to a reading, she made a point of saying they had gotten the good mic back up and running. And, in fairness, making an entire campus of classrooms and other spaces hearing-friendly will take time, money… and attention. In fact, I’ve already managed to get an FM system installed in two auditoriums in another building on campus. So, slowly, the system is getting better, one complaint at a time.

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I think of that passage I ink-circled, about inhaling smoke like a big secret and letting it burst forth. Advocating to hear can put you in the spotlight, uncomfortably, especially in a group situation, but we should let our needs burst forth to help others who are no doubt in the same situation.

Kathi Mestayer is a staff writer for Hearing Health magazine.

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How Ménière's Led Me to a Master’s

By Anthony M. Costello

Ménière's disease initially presented itself to me 20 years ago in a violent and unfortunate manner. I was 16 attending a New England boarding school when I experienced a vestibular (balance) episode, and it changed my health and life forever.

I remember vividly the vertigo that, without warning, controlled me. I remember the incredible pressure and fullness in my ears and the overwhelming sense of nausea. Realizing I could not stand I sought refuge in my bed, where the sensation of spinning intensified and I vomited profusely.

The school staff could only assume I was intoxicated and took disciplinary action. As I could not yet explain or understand that my behavior was caused by Ménière's disease, I had little recourse to justice. Faced by more unfair treatment, I left the school at the end of the academic year.

For the remainder of high school, I continued to struggle with bouts of vertigo, dizziness, and imbalance. These symptoms impacted my athletic performance, my ability to concentrate on my schoolwork, and my general quality of life. It was a difficult and confusing time as I appeared fine on the outside but I was internally battling a miserable existence that I could not fully understand or control. That paradox has since defined my life.

Shutterstock

Shutterstock

When I received a formal diagnosis, my thoughts, priorities, and routines obsessively revolved around managing my wellness. This new mindset made it difficult to relate to the life I once had or to the lives of those around me. I made great efforts to hide my symptoms and protect loved ones from the negative emotional and physical effects of my disease. I made excuses to avoid social events just because of my illness.

Ménière's disease has repeatedly left me in states of hopeless despair. While it can be perceived as “strong” to persevere through one’s condition independently, I have learned this only leads to more isolation. Ménière's takes so much from its sufferers; it attacks their bodies, tests their spirits, and consumes their thoughts. This is why it is so important to reach out, be honest, and bring others into your world that you trust while you are living with Ménière's. Otherwise, you deprive yourself of not only your health but the relationships you deserve.

The etiology of Ménière's disease remains scientifically disputed and I do not claim to have the answer. But I do know the condition does not respond well to stress. I’ve spent every day of my life carefully crafting my decisions and actions based on how my Ménière's may react. In the process, I’ve come to master handling and mitigating stress. In fact, at 30 I went back to school for a master’s in psychotherapy in part to study stress and the human mind. I now licensed psychotherapist, a career change inspired by my conversations with newly diagnosed Ménière's patients in the waiting room of my ear, nose, and throat doctor’s office.

I have been fortunate to have had periods of relative remission with reduced vertigo. But there is a misconception that Ménière's just comes and goes, allowing the sufferer to return to normalcy in the interim. In reality, part of it is always there, be it the tinnitus, the difficulty hearing people in a crowded room, or the feeling the floor will start moving. There is always the uncertainty of what tomorrow will bring.

Using mindfulness—a meditation technique that helps one maintain in the present without judgment—has been helpful in calming my anxiety. Mindfulness is especially useful when my tinnitus feels overwhelming, and I sometimes I combine the practice with music, a white noise machine, or masking using a hearing aid.

I try to live my life in a manner in which Ménière's never wins. This disease will bring me to my knees—both literally and figuratively—but I just keep getting up. You can’t think your way out of this disease and spending all your time in a web of negative thoughts can be as toxic to your mind as Ménière's is to your inner ears. In my hopelessness, I try to stop my mind from plunging into the abyss and use every tool I can—making plans see friends and family, finding glimpses of joy in the midst of darkness, or being physically active. You have to retain some control when you feel like you have none.

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The only gift that Ménière's has given me is a level of introspection and awareness that I could not have attained in 10 lifetimes. It has stripped me down to my core and forced me to explore what is truly important and made me a better person. I don’t know who I would be without this disease, but I’m positive that person could not fathom the joy or gratitude I find in a moment of health.

Anthony M. Costello, LMFT, lives in Byfield, Massachusetts with his wife, daughter, and 2 dogs. He has a private practice and specializes in helping others with chronic illness. For more, see www.costellopsychotherapy.com.

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How My Hearing Loss Makes Me Better at My Job

By Sarah Bricker

My hearing loss journey led me to a position as a communications specialist at Starkey Hearing Technologies, the Minnesota-based hearing aids manufacturer. Managing a hearing loss at work has meant that I sometimes have trouble hearing speech in noisy conference rooms, and that I may miss various sound cues during international phone calls. Yet as I navigate these challenges in the office, I can also see that having a hearing loss has actually helped me to become a better employee.

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I am comfortable asking for help. There’s a misconception that asking for help means you’re incapable of doing your job or it will make your boss or colleagues think less of you. But I see asking for assistance as showing an interest in learning and growth and a desire to recognize weaknesses and overcome them.

“Hard work” is my middle name. Having a disability often means I have to work a little harder than those with full abilities. I may have to try harder to hear in staff meetings, when talking to clients on the phone, or when attending a seminar in a large auditorium—but I also focus and do due diligence before and after meetings and calls to make sure I didn’t miss anything. Even with my hearing aids, it’s better to be safe than sorry.

I find creative solutions. Because my hearing loss can sometimes prevent me from doing something the usual way, I am always looking for an innovative approach. I believe this is a life skill that will enable me to take on challenging projects at the office and figure out solutions others may not have considered.

I am more accurate in my work.
I know I may miss parts of conversations and other sound signals, but being aware of this has set me up to be extremely detail-oriented otherwise. I am hyper-aware of all the minutiae and will carefully analyze each element of an assignment before I consider a project finished.

I work well alone and with a team! Having a hearing loss means I’ve learned the skills necessary to be self- sufficient and to succeed on my own. By the same token, my hearing loss has also given me an underlying “Go Team!” attitude from years of asking for help. I know I can rely on my team, whether it’s to fully follow a group discussion or to make sure I get all the notes I need in a conference hall.

I am patient. Hearing loss means I may have to listen to the same phrase three times before understanding it, but that’s okay. I’ve learned that getting it right is more important than getting it right now. That outlook is extremely beneficial when it comes to long-term projects and client relationships, not to mention everyday interactions with colleagues, friends, and family.

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Texas native Sarah Bricker holds a bachelor’s degree in journalism from the University of Missouri and is a communications specialist at Starkey Hearing Technologies in Minnesota. She has a profound progressive sensorineural hearing loss that was diagnosed at age 13. This article originally appeared in the Winter 2017 issue of Hearing Health magazine.

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Hyped Up Now, Hurting Later

By Yishane Lee and Lauren McGrath

In an interview, longtime healthcare professional Bob Kambic warns about the health risks of the over-amplification that is becoming increasingly common at recreational events.

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What got you interested in the topic of the dangers of loud entertainment?
I am 75 and a grandfather. Recently I was in Detroit for an event in which my grandchildren participated. The finale of the event was held in Ford Stadium, a football venue. The electronically amplified sound was deafening even wearing my noise-canceling headphones.

The 30,000 or so people in the stadium were subject to what in other places would be called torture. I wondered, is there a way to tell the organizers they are harming our young citizens, the future of our country?

As a retired healthcare professional, I have a half century of experience in the healthcare field and more than 50 publications in peer-reviewed journals. This got me thinking about noise levels in entertainment venues. Raising awareness of this public health problem needs to be done.

Why is the music so loud?
Consider a musician playing an electric guitar in front of a crowd. She will hear her music from an amplifier. But she then finds that she likes it loud and turns the small knob up. After weeks or months that level is not satisfactory and she makes another turn up.

Over time, as the louder sounds gradually diminish hearing, it becomes necessary to turn the knob up more and more. For music professionals, this is called increasing the gain, which is one way to increase the volume of sound from the speakers. The other way to increase volume is to turn up the signal coming out of the speakers themselves.

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When musicians play to big crowds they now have amplifiers and systems that produce thousands of watts of power and can project over 100 decibels (dB). This technology is also used for recorded music. It “entertains” but it also may harm the listeners’ ears. Musicians and their producers know that “loudness does not equal quality”—but that caution can get lost in the need to entertain.

By 2022, live music industry revenue is projected to be worth $31 billion worldwide, according to PricewaterhouseCoopers. Like other industries, the money is the driver. To me this means the live music industry will continue to use larger and louder electronic amplification.

The electronically amplified sound is now also ubiquitous at rallies and sporting events, both professional and collegiate—or even younger—to hype up the crowd.

What can we do to protect our hearing, and especially the hearing of children?
Earplugs. I was happy to see an article in a music industry publication saying that the purchase of custom musician’s earplugs is one of the best investments a music industry worker can make. They didn’t recommend earphones, mixers, digital equipment, or music instruments—just earplugs. Frequent concert-goers should also invest in custom musician’s earplugs.

For children, this is a tough question because kids don’t want to be told what to listen to and how loud the sound should be. But there are a variety of products for hearing protection. The first are simple foam earplugs, widely available at hardware stores, pharmacies, and online. The disadvantage is that they must be pushed into the ear canal and may not fit all size ears. (See “8 Pairs of Earplugs in 4 Noisy Settings,” next page.)

The next step up is over-the-ear earmuffs that cover the ear entirely. They are long-lasting and work well but they are also big and bulky.

Finally there are noise-canceling headphones made by audio or electronic equipment manufacturers. I use battery-powered noise-canceling headphones on airplanes and trains, and was wearing them at the event at the Ford Stadium. You may want to explore the varying prices and technology. Many can also play personal music through wireless and/or wired connections.

Besides using hearing protection, what else can you do?
Take action against unnecessary noise. Groups of parents can petition their schools and sports teams to reduce amplification at indoor and outdoor events. Decibel meters are inexpensive or free as smartphone apps and can be used to show managers and administrators the sound level at events, and when the volume reaches dangerous levels at over 85 dB.

The music and electronic sound industry is in control of this problem because of the amount of money in the industry, but also because well-known musicians such as Huey Lewis and Eric Clapton, who are open about their hearing loss, are helping to raise awareness. Media coverage and local action can bring attention to bear, and over time the industry may become aware of amplification as a health problem for everyone, including the audience, not just for those in the industry.

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Bob (Robert T.) Kambic, MSH, is a retired health professional who worked at the U.S. Department of Health and Human Services and the Johns Hopkins University (JHU) Bloomberg School of Public Health. He is a current visiting scientist with the JHU Medical School Division of Health Sciences Informatics and plays and sings American traditional music using acoustic instruments.

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Hearing Loss and Disability Benefits: Who Can Qualify

By Mary Dale Walters

Acoustic trauma is a common characteristic of military life. No matter which branch served and whether in peacetime or wartime, hearing loss and tinnitus are the top two health conditions for which veterans receive disability benefits from the U.S. Department of Veterans Affairs (VA). Hearing impairments also may be a factor in eligibility for Social Security Disability Insurance (SSDI) benefits. But just who can receive benefits for these conditions?

In order to qualify for both VA disability and SSDI benefits, hearing loss must be significant: Veterans must have experienced a profound loss of their auditory capacities or be fully deaf. That means individuals who fall into the “mild to moderate” range are likely not eligible for SSDI benefits, and these may include those who rely on hearing aids to improve their hearing.

If a veteran is one of the remaining 30 percent who has experienced severe hearing loss, he or she may be eligible for SSDI benefits, provided they meet the other qualifications laid out by the Social Security Administration. On the other hand, VA disability benefits allow for lesser impact and disability ratings as low as 10 percent for service-connected conditions. That’s why more veterans may qualify for VA disability income, rather than SSDI, with a hearing-related condition.

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Like all VA disability claims submitted by veterans, the better you can demonstrate that the hearing loss or acoustic trauma incurred during your military service caused or contributed to your current hearing loss today, the more likely your VA disability claim is to be awarded.

With SSDI benefits, there is one situation in which a veteran may be highly likely to receive approval: cochlear implants. Having a cochlear implant in one or both ears automatically grants an individual eligibility for SSDI benefits for a year after the procedure. Following that one-year period, recipients take a Hearing in Noise Test (HINT). Benefits are only extended if the test is failed.

If an individual does not have a cochlear implant, he or she must pass one of two tests: audiometry, which measures the “threshold sensitivity for air conduction” in both ears; or a word recognition test, where an individual must be unable to repeat more than 40 percent of the spoken words due to their impairment.

Sometimes, even if hearing loss is not profound, it can be the basis for a successful SSDI award if combined with other qualifying conditions. Hearing loss and tinnitus can cause or aggravate other medical issues such as insomnia, depression, anxiety, and headaches. Hearing loss can also be intertwined with other vestibular disorders such as vertigo, vestibular migraines, and Ménière’s disease. For this reason, hearing loss can limit functional capacity and allow you to qualify for VA or SSDI benefits. For SSDI specifically, you will need to demonstrate you are unable to gain employment due to your condition.

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If this seems a little confusing, it can be. The issue of hearing loss and dual eligibility point to the benefit of having expert help in the disability claims process. Assistance can be vital when filing a VA disability appeal. When applying for SSDI benefits due to hearing loss, tinnitus, or related conditions, it’s critical to apply immediately—and be prepared to wait. In the meantime, put together a budget and start spending smarter to protect your financial assets.

Mary Dale Walters is a senior vice president at Allsup and editor of the ebook, “Applying for Social Security Disability Insurance: Getting It Right the First Time."

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Facing the Music

By Joe Mussomeli

Every family has holiday traditions—ours is to visit New York City. For the past five years, my mom, dad, and brother, Alex, have committed a single hour drive to experience the magic of the greatest city in the world during Christmas time. When we arrive each December, Alex and I are in awe of the magical sight of neon Christmas lights covering Radio City and the giant tree in Rockefeller Center. Despite our fascination with the city’s holiday decor, nothing we see outside compares to the highlight of our annual tradition, attending a musical performance on Broadway.

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Our first musical, Annie, was an incredible experience for our family, but it was difficult for Alex. Born with a hearing loss, Alex uses a hearing aid and cochlear implant. Though his devices have greatly helped him over the years, there are some situations where their benefits are limited. While watching  Annie, Alex had trouble understanding some of the lines that the actors were saying, missing every few words spoken. As a result, he couldn’t grasp the full context of the story or make sense of the audience’s reactions. Whenever the audience laughed, Alex would laugh along with them. He laughed knowing that he had missed a word, had lost a sentence, and didn’t catch the joke.

Alex followed this copycat formula for the next few Broadway plays we attended. When we saw The Lion King, he was amazed by the costumes and the bright lights, but he couldn’t hear Timon and Pumbaa singing “Hakuna Matata.” The beautiful music in Aladdin delighted Alex, but he didn’t pick up on Jafar calling Aladdin a “diamond in the rough.” After we saw Aladdin, I asked Alex if he enjoyed the musical. He told me that he did, but felt as if viewing the show was like trying to complete a project without all the tools. For Alex, the musical was a puzzle and he had lost a few pieces while assembling the final product.

Last December, my family and I watched our newest musical, Dear Evan Hansen, and it was Alex’s favorite so far. We arrived at the theater happy to know there was  a closed captioning option for guests with hearing loss. Weeks before, my parents had called the captioning company that provides services for Broadway musicals and reserved a closed captioning device for Alex. He was given a small tablet and was told that the actors’ lines would appear on the tablet as they were spoken. Minutes later, the musical began, and Alex was just as invested in the show as the rest of the audience. Now, he could understand everything that was happening on stage! It was an enlightening experience for him. He understood every sentence, took in every word, and laughed at every joke, and not for the sake of laughing along to fit in, but because he got the joke. When we finished the musical I turned to Alex and asked him if he liked it. He replied with three words: “I loved it.” Finally, Alex had completed his puzzle with ease.

Joe Mussomeli is a 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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How to Create a Healthy Hearing Environment for Children

By Alyson McBryde

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“How many times do I have to repeat myself?” If you’re a parent or guardian, chances are you’ve said this to your child before. Indeed, a part of parenting is repeating yourself―but what if it becomes part of a bigger issue?

In 2015, the World Health Organization (WHO) estimated “1.1 billion teenagers and young adults are at risk of hearing loss due to the unsafe use of personal audio devices including smartphones, and exposure to damaging levels of sound in noisy entertainment venues such as nightclubs, bars, and sporting events.”

The WHO indicates “unsafe levels of sound can be, for example, exposure to in excess of 85 decibels (dB) for eight hours of 100 dB for 15 minutes.” Exposure to dangerously loud sounds could damage the sensitive structures of our inner ear and lead to permanent hearing loss. Here’s the thing about noise-induced hearing loss: it is 100% preventable.  

As a parent or guardian, you can implement fun and effective hearing loss prevention activities and strategies like these:

Lead a Learning Experience
Look for science videos and activities that demonstrate how sound, the ear, and hearing work. Great examples include Hearing Health Foundation (HHF)’s interactive, captioned video, Kids Health, and The Magic School Bus.

Watch Out for Noisy Toys
A study on sounds emitted by children’s toys found “the average sound levels of the various toys were 106.8 dB measured at a point nearest the sound source,” according to ASHA. Use a decibel-measuring app to check out your kids’ toys before they play.

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Limit Time with Electronics
NBC News reports: “Each new generation of teenagers has found a new technology to blast music – from the bulky headphones of the 1960s to the handheld Sony Walkmans of the 1980s. Today’s young people are listening longer, more than twice as long as previous generations.” Remember when our elders told us to “go outside and play”? Encourage your kids to do the same.

Turn Down the Volume
Enforce the 60-60 rule: Allow your child to listen at 60% volume for 60 minutes at a time. Look into apps that allow you to set parental controls on volume levels and encourage your kids to take a break from nonstop sound! 

Beware of Noise Levels at Live Events
Did you know a live ballgame can reach 120 decibels? Live sporting events can be extremely dangerous for little ears. The same goes for live music shows. Bring along a pair of foam or custom-made earplugs!

Keep Those Little Ears Warm
If you live in a place with cold winters, make sure you kids have earmuffs or hats that cover their ears. Cold air may affect hearing with exostosis, known as “surfer’s ear,” which happens when abnormal bone growths interfere with the auditory process.

Swim Safely
During the summer, while attending swim lessons, or on vacation, protect your kids’ ears with swim plugs. Swim plugs help to prevent swimmer’s ear, or otitis externa, caused by bacteria inside the ear canal, which can lead to trouble hearing.

Treat Ear Infections Immediately
Kids experience ear infections far more regularly than adults due to the size and positioning of their Eustachian tubes. Seeking immediate treatment from an ear-nose-throat (ENT) specialist for otitis media―ear infections―could help prevent hearing loss in kids.

Invest in Earplugs
Whether they are made of generic foam or are custom-molded to fit in their ears, earplugs are a great barrier between little ears and dangerous levels of sound. Carry a pair wherever you go―you never know when you may need them! 

Get Their Hearing Tested
Hearing health should be treated no differently than any other part of your kids’ overall health. In the same way your kids get a full physical and vision test annually, build a hearing test into the routine! Hearing tests keep track of your kids’ hearing abilities, and if anything changes, your hearing health professional can help find a solution.

Alyson McBryde leads the customer success team for HearStore.

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Celebrating the 10th Anniversary of Grace’s Law

By Jeanine and Grace Gleba

In December 2008, a small (Christmas) miracle happened in the state of New Jersey and personally for our family. It’s hard for us to believe that it has been a decade since Governor Richard Codey said these words:

Grace Gleba (red sweater on right) looks on as HAIL is signed into law.

Grace Gleba (red sweater on right) looks on as HAIL is signed into law.

“I want to personally thank Grace and the entire Gleba family for their years of advocacy on behalf of children with hearing loss. Grace’s tenacity, and her own example of what children can achieve with the proper treatment for hearing loss, are a major reason why kids in New Jersey will be able to receive the gift of hearing for years and years to come. Grace and her family have taken personal adversity and turned it into something positive for the people of New Jersey. We all owe her a debt of gratitude.”  

The governor spoke as we witnessed the passage of Grace’s Law S467/A1571. These bill numbers are emblazoned forever in my mind.

Grace’s Law is known as Hearing Aid Insurance Legislation (HAIL) and mandates hearing aid coverage for New Jersey children ages 15 years and younger. For our family and all of the families who advocated in the state capital of Trenton with us, it was a monumental accomplishment. In fact, it took nine years to raise awareness and fight for this law to become a reality. The statistics validate this being quite a feat as only 3 percent of all bills introduced ever become a law!

On the law’s 10th anniversary, here are 10 ways you can celebrate this landmark legislation:

1) Take a few minutes to learn the history of the bill here and here. You can read the original legislation and the most recent pamphlet that the NJ Department of Human Services’ Division of the Deaf and Hard of Hearing has produced explaining Grace's Law. Take note that as a result of the Affordable Care Act, the state has made this an essential health benefit and since 2014 there is no longer a maximum benefit limit of $1,000 per hearing aid (after deductibles, copays etc.). Now that’s something to celebrate—that children now can have even better coverage!

2) Support research toward a biological cure for hearing loss with a contribution to Hearing Health Foundation (HHF)’s Hearing Restoration Project (HRP). The HRP is a scientific consortium studying how fish, birds, and mice regenerate their hearing to replicate this phenomenon in humans.

3) Do you know a child who has benefitted from Grace’s Law and is a shining example that with their hearing aids they have overcome obstacles and achieved great things? Help them join HHF’s Faces of Hearing Loss awareness project. Their participation will show that hearing loss and related conditions can affect anyone.

4) Make a difference in someone else’s life and give the gift of sound by donating old hearing aids to Hearing Charities of America.

5) Wear earplugs for a day to gain a better understanding of living with hearing loss on a daily basis and why getting fitted for proper hearing aids can improve lives.

6) Participate in Walk4Hearing events held nationwide by the Hearing Loss Association of America.

7) Tweet a message showing your gratitude for HAIL. Tag @graceslaw and @hearinghealthfn include a link to this blog post. Here are sample tweets to get you started:

  • For 10 years #GracesLaw #HAIL has helped children in NJ hear. Help spread the word by doing something from the 10 Ways to Celebrate!

  • Millions of Americans experience some sort of hearing loss. #HAIL is needed in every state. #listenupamerica

  • #HAIL Yeah!

  • I’m celebrating #GracesLaw #anniversary by _____________.

  • #GracesLaw improved my/my child’s quality of life by ____________.

  • This year I am thankful for #HAIL #GracesLaw and hearing technology #gratitude

8) Advocate like we did 10 years ago! Last year, President Donald Trump signed into law the Food and Drug Administration Reauthorization Act of 2017, which includes the Over the Counter Hearing Aid Act. Next, we hope Congress will pass federal HAIL for all ages. Hearing loss doesn’t discriminate, so why does insurance coverage? Write your legislators to let them know that this is important to you.

9) Schedule a hearing exam for you or a loved one.

10) Protect your hearing or lose it. People of all ages can be affected by noise-induced hearing loss. Turn down the volume on your electronic devices. Find more ways to protect your hearing.

This article was repurposed with permission from Jeanine and Grace Gleba. Jeanine Gleba serves as a public member on the NJ State Audiology and Speech-Language Pathology Advisory Committee. Grace Gleba is a student in the Schreyer Honors College at Pennsylvania State University, where she is majoring in communications sciences and disorders with a minor in health administration and policy.


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