The Best Lesson Yet

By Layla Rudy

I was diagnosed with bilateral sensorineural hearing loss at age 3, after a series of unsuccessful doctor visits. Two years later, I was going to the audiologist to get my hearing aids for the first time. I remember being frightened by a picture in the waiting room of the shiny tube that comes out of the ear molds attached to hearing aids. My little brother was crying in the stroller as we left the doctor’s office for brunch.

Layla, age 5, with one of her brothers, James

Layla, age 5, with one of her brothers, James

I went to speech therapy for the next four or five years; during school, along with two other kids, I was pulled out of class a few times a week. I remember thinking that I didn’t belong there, that I was “normal,” and that everything was fine with me. But the teachers and administration didn’t know what to do with me—they thought something was wrong with me, and they just threw me in the same boat as the kids with speech problems or ADHD.

I was the only kid in my elementary school with hearing loss. While it was great that my mom wanted to mainstream me, looking back, it was clear the school didn’t know how to handle a student like me.

The problem was ignorance more than a lack of resources—although that was an issue, as well. My teachers plopped me in a desk—not always in the front of the room—and, not understanding how important the FM system was for me to hear in their classrooms, didn’t wear it. I thought the teachers didn’t care about me, but it turns out they just never learned how to deal with students with hearing loss. I was too embarrassed to say anything, so the FM systems often went completely unused. For the same reasons, I was never assigned a note-taker. I was the outlier in a room full of typical children.

Identical issues continued in middle school and high school. I developed anxiety from a young age and, by adolescence, the effects were more severe. In retrospect, a lot of my anxiety stemmed from my worries that my peers were talking about me, or that I was not fully aware of my surroundings. To put it simply, I was anxious because I couldn’t hear.

My mom had always told me that college would be easier—I could get a note-taker and finally have the resources I never had. When I applied to Brooklyn College, I found the Center for Student Disabilities Services on their website. I was thrilled to find that they had a section devoted to hearing loss and deafness. Better yet, professors were given a guide to understand how each disability was to be handled and treated.

So, when I arrived at their offices, I filled out forms and submitted my hearing test results. They had told me to come back in a few days, at which point I would have everything I had wished for in elementary school.

Ironically, I never bothered to go back to their offices, and I never bothered with their accommodations.

I have spent my whole life going home and teaching myself what the teacher had taught us in class (that I could not hear)—taking my own meticulous notes that my classmates begged to borrow. I have always wanted a note-taker, an FM system that gets consistently used, and empathetic teachers. Now that I finally have access to all of this, I don’t need it.

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I realize I’ve subconsciously trained myself not to rely on anyone else; it’s not that I don’t want to ask for help, or that I’m too embarrassed. I know that if I need it, I can ask, unlike when I was in elementary school. But my hearing loss, my disability, has enabled me to rely on myself, to be aware of my surroundings, to better communicate with others.

And to me, self-reliance is the best lesson yet.

New Jersey native Layla Rudy is a freshman at Brooklyn College planning on studying biology to eventually conduct auditory research. She is also a participant in HHF’s “Faces of Hearing Loss” campaign.

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Moving Toward a Future Free of Drug-Induced Hearing Loss

By Erik Robinson

A new special publication orchestrated by five of the nation’s leading hearing experts compiles the latest research into hearing loss caused by drugs and solvents—how it occurs, how to treat it, and how to prevent it.

HHF Council of Scientific Trustees member Peter Steyger, Ph.D., and colleagues produced a special Frontiers in Cellular Neuroscience publication on the topic of ototoxicity.

HHF Council of Scientific Trustees member Peter Steyger, Ph.D., and colleagues produced a special Frontiers in Cellular Neuroscience publication on the topic of ototoxicity.

The compilation was published online as a special research topic by the journal Frontiers in Cellular Neuroscience on March 5, 2018. It includes both original research and focused reviews. The Pharmaceutical Interventions for Hearing Loss Working Group organized the effort at the behest of the Department of Defense (DoD) Hearing Center of Excellence.

“We’re trying to elevate ways for the human population to avoid losing this important sensation for experiencing and communicating with the world around us,” says coauthor Peter Steyger, Ph.D., a professor of otolaryngology/head and neck surgery in the Oregon Health & Science University (OHSU) School of Medicine, and a member of Hearing Health Foundation’s Council of Scientific Trustees.

“Ototoxicity is a threat to hearing at any age and hearing loss remains a significant side effect of chemotherapy. This review highlights how far we’ve come in understanding that threat and provides us with a roadmap for developing more effective ways to recognize and address the problem,” adds coauthor Jian Zuo, Ph.D., of the department of developmental neurobiology at St. Jude Children’s Research Hospital in Memphis, Tennessee.

In people, hearing cells don’t regenerate so the loss is irreversible. That’s why it is crucial to understand the mechanisms that affect hearing and how to prevent loss of hearing, Steyger says. The introductory editorial, “Moving Toward a Future Free of Ototoxicity,” highlights the latest scientific research exploring how certain pharmaceuticals damage the inner ear while others can protect it. It also highlights the need for better monitoring and detection of hearing loss over time, especially among patients being treated with antibiotics.

Steyger, who lost hearing as a child after being treated with antibiotics for meningitis when 14 months old, noted that hearing loss affects a surprisingly large proportion of the population—rising from an estimated 1 in 500 newborns to as many as half of all people age 75 or older. The research encapsulated in the new e-book includes 23 scientific articles from 93 authors and represents the state of the science in both prevention and treatment of ototoxicity hearing loss. (The e-book is available to all, free of charge.)

“This compilation will help to propel our knowledge forward and underscore the need to better understand the dangers of ototoxicity. The DoD Hearing Center of Excellence is honored to host and mobilize this important effort,” says coauthor Carlos Esquivel, M.D., a neurotologist and chief medical officer in the Clinical Care, Rehabilitation, and Restoration Branch of the DoD Hearing Center of Excellence at Joint Base San Antonio in Texas.

In addition to Steyger, Zuo, and Esquivel, the publication’s editors include Lisa Cunningham, Ph.D., of the National Institute on Deafness and Other Communication Disorders, and Kelly Watts, Au.D., of the DoD Hearing Center of Excellence.

This originally appeared in OHSU News and was republished with permission. 

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Ménière's Disease Grantee Featured in Reader's Digest

Credit: Agnieszka Marcinska, Shutterstock

Credit: Agnieszka Marcinska, Shutterstock

Ian Swinburne, Ph.D., a 2018 Ménière's Disease Grant (MDG) recipient, shared his expertise regarding vertigo with Reader's Digest in an article called "What Causes Vertigo? 15 Things Neurologists Wish You Knew" published in March 2018. 

"The spinning, dizzying loss of balance which earmarks vertigo can come without warning," the article opens. Various professionals provide information about its duration, how it feels, and different types.

HHF-funded Dr. Swinburne notes specifically that the inner ear and balance disorder Ménière's disease can cause vertigo. He explains that "[b]outs of vertigo likely arise in patients with Ménière's disease, because the inner ear's tissue tears from too much fluid pressure—causing the ear's internal environment to become abnormal.'" He is currently pursuing a research project to understand the inner ear stabilizes fluid composition, which he believes will help to identify ways to restore or elevate this function to mitigate or cure Ménière's disease.

View the full article from Reader's Digest, here.

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Ugly Emotions

By Lisa Peten

Some time ago, I was having a text conversation with a friend who also has bilateral sensorineural hearing loss. When I relayed to her that I am thankful in many ways for the changes that have occurred in having this condition, she was outraged that I would say such a thing. This prompted her to rant 1,001 ways in which her hearing loss is essentially ruining her life.

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Despite being 20 years my senior, we share similar emotions in dealing with our late-deafened and hard-of-hearing experiences. Since we are usually so very aligned in our thoughts and emotions, I imagine my appreciation for this condition caused her outrage and to be even more perplexed about my gratitude for this condition. In any event, we hashed through this discussion and came to an “agree to disagree” conclusion which posed a crossroads in our friendship. We closed this discussion with authentic, raw emotion, conjuring up dispassionate experiences which urged persuasion to change the other’s mind. In the end, we were both thankful for the honest sharing and I learned a thing or two more about compassion and empathy.

I learned that “ugly” emotions (i.e. rage, envy, and hate) about being deaf/hard-of-hearing have not been given the time, space, or energy to address them. They are sometimes buried falsely with the perception that these types of emotions are unacceptable. Emotions like helplessness, frustration, and sadness seem to easily find ready support, but the ugly emotions present an elephant in the room never to be acknowledged.

After years of being unsuccessful in burying “ugly” emotions, I found three techniques to love yourself through these moments:

Share Immediately

For a long time I told no one except my family about my hearing challenges. It was too vulnerable an act for me to bare. Nowadays, sharing this detail immediately has had a positive effect on my experiences at restaurants, retail establishments, and even medical visits beyond the ENT and audiologists. Lessons learned along the way has taught me to release the emotions quickly, to avoid an emotional explosion later.

Dispense Energy

When emotions of any kind, especially the ugly, surface, dispensing activity provides another early release. In the past, I would practically run from humiliating situations when hearing incorrectly. Now, I can easily own up to the error and explain my hearing loss. While the embarrassment is still present, it does release my ugly emotions and allow the moment to pass without festering.

Forgive with Compassion

I continue to struggle with others’ reactions to my hearing loss. Eleven years after my diagnosis, I still feel sullen when I communicate with people who I have known before my hearing loss. Often times, after they learn of my hearing loss, they speak louder and unconsciously use body language to essentially ignore me, especially during group conversations. I know this is ignorance or discomfort on their part, but it still hurts. I have learned to fire away compassion for all of us in order to ease these emotionally ugly moments.

I hope the point of contention of my hearing loss someday subsides. However, in the meantime, I will own all emotions associated with my hearing loss, and will remember to extend greater compassion and empathy to those of us who need it when ugly-filled emotions become present.

Lisa Peten is a self-help hearing coach, mind-body empowerment speaker, and health advocate blogger, on a mission to empower health-hungry communities to become more proactive in obtaining nourishing foods and seeking holistic health alternatives. She is the founder of Sound Health and Hearing, a health coaching boutique consultancy. She is also a participant in HHF's Faces of Hearing Loss campaign.

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

 
 



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HHF Welcomes John Dillard, Retired U.S. Army Colonel, to Board of Directors

By Nadine Dehgan

Hearing Health Foundation (HHF) recently welcomed COL John T. Dillard, USA (Ret) to its  Board of Directors. A Cold War Veteran, COL Dillard lives with tinnitus and hearing loss—the two most common war injuries—as a result of repeated exposure to gunfire and blasts.

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COL Dillard is currently a Senior Lecturer for Systems Acquisition Management at the Naval Postgraduate School (NPS) in Monterey, California, where he has been employed since his retirement from the U.S. Army in 2000. His curricula focus on system developments to advance technology and warfighting capabilities. At the NPS, COL Dillard also counsels young military officers as they cope with the effects of tinnitus including sleep, concentration, and mood issues.

Previously, COL Dillard held positions as an instructor at the U.S. Army War College and an adjunct professor at the University of California at Santa Cruz. In the latter, he educated Silicon Valley public and private industry professionals in Project Management. The full-text versions of his own many written works on managing technology efforts are available on ResearchGate.

In addition to his present role at the NPS, COL Dillard is a Defense Department Consumer Reviewer for the annual Congressionally Directed Medical Research Program for scientific proposals in the areas of tinnitus and noise-induced hearing loss research. COL Dillard says that he "hopes to contribute in a tangible way to HHF’s drive to restore hearing for countless people affected by its loss."

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Security Updates to HHF Donation Page: Action Required

By Lauren McGrath

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Hearing Health Foundation (HHF) is committed to maintaining transparency with our constituents. In addition to our pledge that all contributions are well-invested—100% of all donations benefit our critical research and awareness programs—HHF promises to uphold data security best practices with online gifts.

We request that you make two simple updates to you ensure you can donate to HHF online in the future. Follow the links included here for guidance making the changes:

  1. Update your operating system (OS) on your Apple or Windows computer to the most up-to-date version.

  2. Update your internet browser to the most up-to-date version.

Our online giving page will be inaccessible to users who do not complete these changes by March 15, 2018.

The updates are required because today's industry standard security features are no longer compatible with older systems. Ensuring that your OS and internet browser are fully up-to-date is the best way to protect your donation and guarantee it is processed safely. This is an industry-wide requirement to ensure the highest level of security when processing all financial transactions.

Please contact us at info@hhf.org if you require assistance making these changes or have any questions about the security of our donation platform.

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Improving Diagnostic Test for Ménière’s Disease

By Wafaa Kaf, Ph.D., and Carol Stoll

Electrocochleography (ECochG) is a commonly used assessment of the auditory system, specifically the inner ear and the hearing nerve. ECochG is most often elicited by a brief acoustic stimulus, known as a “click,” at a relatively low repetition rate. It measures two key responses: summating potential (SP) and action potential (AP), which assist in the diagnosis of Ménière’s disease, an inner ear and balance disorder. Previous research has established that individuals with Ménière’s disease are likely to have abnormally large SPs and a large SP/AP ratio. Though click ECochG has great potential to detect Ménière’s disease, it lacks sensitivity, or the ability to correctly identify those with the disease. Only 69% of those with Ménière’s disease are correctly diagnosed, while 31% of those with the disease have normal ECochG results. This lack of accuracy prevents its use as a definitive diagnostic tool. Hearing Health Foundation 2015 Emerging Research Grants recipient, Wafaa Kaf, Ph.D., is researching the use of a novel analysis technique called Continuous Loop Averaging Deconvolution (CLAD) to best improve the sensitivity of ECochG to high click rate for diagnosing Ménière’s disease. Findings were recently published in Ear and Hearing 2017.

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In a recently published paper in Frontiers in Neuroscience, Kaf’s research team shares its findings on the effects of altering the parameters of the acoustic stimulus on ECochG responses to quantify the effect of stimulus rate and duration of the elicited stimuli. Kaf and her research team obtained SP measurements to 500Hz and 2000Hz tone bursts that varied in duration and repetition rate from 20 adult females with normal hearing. CCLAD was used to interpret the tracings elicited by the differing stimuli of tone bursts.

They found that SP amplitude was significantly larger when using the highest stimulus repetition rate. It is believed that the high stimulus repetition rates minimize the neural contributions and mostly reflect hair cell responses, the target of ECochG. In addition, longer duration stimuli is believed to better reflect hair cell involvement while shorter stimuli may be useful in eliciting responses reflective of neural contributions. Lastly, 2000Hz tone bursts produced larger SP amplitude as compared to 500Hz tone bursts. Therefore, 2000Hz tone bursts with a high repetition rate and long duration can be used as parameters to minimize neural contributions to SP measures whereas short duration stimuli can be used if one wishes to asses neural activity.  

The data that Kaf’s team published is a critical initial advancement towards ultimately understanding the SP measurement in diseased ears. Their findings not only provide normative data for tone burst ECochG across stimulus frequencies, stimulus rates, and stimulus durations, but also help others better understand how to improve sensitivity of ECochG for early diagnosis of Ménière’s disease.  

Wafaa Kaf, Ph.D., is a 2015 Emerging Research Grants recipient. Her grant was generously funded by The Estate of Howard F. Schum.

WE NEED YOUR HELP IN FUNDING THE EXCITING WORK OF HEARING AND BALANCE SCIENTISTS. DONATE TODAY TO HEARING HEALTH FOUNDATION AND SUPPORT GROUNDBREAKING RESEARCH: HHF.ORG/DONATE.

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San Diego Tunes In to Hearing Health

By Jordan Conole

On February 11th, Hearing Health Foundation (HHF), the nation’s largest nonprofit funder of hearing and balance research, hosted a public seminar on hearing health and hearing loss in at the Central Library in Downtown San Diego.

Guests mingle before the start of presentations on hearing loss research and treatments in the Shiley Special Events Suite of the San Diego Central Library.

Guests mingle before the start of presentations on hearing loss research and treatments in the Shiley Special Events Suite of the San Diego Central Library.

Event attendees included members of the public, scientists and researchers, many of whom have devoted their careers to finding a cure for hearing loss.

Ronna Hertzano, M.D., Ph.D., a surgeon at the University of Maryland Medical Center, spoke about the need for change in the way we treat hearing loss, noting, “Just as a doctor would now take a patient with elevated or slightly higher blood pressure seriously, we must do just the same with hearing.” Dr. Hertzano claimed that those who experience hearing loss oftentimes can suffer from loneliness and feelings of isolation.

According to a recent study by the National Aging Committee, more than 11% of those with some form of hearing loss suffer from depression compared to only 5% of the general public.

Dr. Harrison Lin, a scientist funded by HHF’s Emerging Research Grants program, and colleagues discovered that of the 48 million Americans who report experiencing some form of hearing loss, only about one-third of those actually seek out treatment.

Ken Knoblett, a San Diego resident who counts himself as part of that third, noticed a drastic change in his interactions with friends and family once he began to use hearing aids. “I was immediately able to be more connected to my friends and family and enjoy gatherings again. The hearing aid and treatment really changed my life for the better!”

Based on the strong connection to hearing loss and its strong emotional side effects, testing for hearing loss and treating it is the best way to combat and prevent its underlying side effects.

Hearing loss is an isolating condition for hundreds of thousands of Americans, but the scientists working for HHF hope to someday end that isolation.

Jordan Conole is a freelance journalist who covers San Diego local nonprofits and charity events in the surrounding areas. 

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My Ears Don’t Work, But My Implants Do

By Caroline O.

“No Walkman in the water, ma’am.”

I’m in my neighborhood park, about to go swimming in a New York City public pool. “Oh sorry,“ I stammer to the City Parks employee addressing me. “It’s not a Walkman. It’s a waterproof cochlear implant processor.”

She looks at me like I’m speaking Greek. “No electronics in the water,” she repeats.

“But it’s to help me hear,” I explain.

She doesn’t budge. She doesn’t understand. I have to try another tactic. Deep breath. “I’m deaf. I cannot hear without this, so I need to wear it while I swim. It’s not a Walkman, see? It’s a magnet that goes on my head.”  

Caroline and her family

Caroline and her family

The word deaf gets her attention. Now she gets it. Here in front of her is a person with a disability. Here is a person using an accommodation. She knows she cannot stop me from using it. Looking embarrassed, she waves me through. I thank her and smile.

In the five years since I’ve gotten my cochlear implants, one of the biggest challenges—or at least, one of the most unexpected ones—has been the need to explain the technology to others. Thanks to my long, thick hair, most of the time no one can see my implant processors at all. But when they can, the reaction is often one of bemusement or blankness.

My experience with the City Parks employee was not the first one like that, or the last. Once, on vacation, someone asked me why I needed an MP3 player in the ocean. He thought I was listening to music. He didn’t understand that I was listening to the whole world.

On a planet where only about a half million individuals out of 7.5 billion use a cochlear implant, ignorance of the technology is to be expected. And I’m proud to speak on its behalf, to explain why I need them and what they do, and to proclaim that while the technology is a marvel of science, for me it’s also just pure magic.

I love making people smile when I tell them about the first time I heard the swish-swish that applying body lotion makes (a sound I never knew existed!), or how I learned that you don’t have to actually stand in front of the oven waiting for it to reach the desired temperature, because… Did you know there’s a beep? (They knew. I did not.)

But it’s also frustrating at times. “I’m not tuning out my children,” I want to shout to those shooting a disapproving glance at that wire sticking out of my head. “I’m tuning in!”

Even relatives and close friends did not, initially, quite understand how my cochlear implants work. The very day my first implant got activated, a friend texted, “So, do you hear perfectly now?” I had to explain that, in fact, that first day I heard very poorly; it would take time, patience, and months of listening practice with a good speech-language pathologist before my brain would learn to process what initially sounded artificial and electronic as the normal, everyday sound of objects and voices.

Is my hearing perfect today, five years post-implantation? No, but it’s pretty darn good. Especially considering that, after decades of moderate to severe hearing loss, today I have no natural hearing left at all.

My ears don’t work. But my implants do, splendidly. And I couldn’t be happier.

This article originally appeared in the Winter 2018 issue of Hearing Health magazine.

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Study Suggests that Nursing Homes Ignore Residents’ Hearing Loss

By Robert Polner

Over the past decade, hearing loss has emerged as a key issue in aging and health.  The problem affects over 80% of people aged 80 and over. Hearing loss is associated with social isolation, depression, and cognitive impairment --- all problems that are common among nursing home residents.

Yet the problem of hearing loss has not received much attention in the nursing home world.

Photo Credit: Senior Guidance

Photo Credit: Senior Guidance

“Hearing loss is often seen as an inevitable consequence of aging,” said Professor Jan Blustein, M.D., Ph.D., professor of health policy and management at New York University’s Robert F. Wagner Graduate School of Public Service, the senior author of a study published today (Jan. 30) in The BMJ. “Many people just don’t appreciate how much hearing loss disrupts understanding and communication, and what a toll that takes in the lives of vulnerable older people.”

Prior studies in single nursing homes have shown that staff are often unaware that residents are having difficulty hearing.  But Blustein and her colleagues found that this appears to be a national trend.  Using data that all US nursing homes are required to report to the federal government known as the Minimum Data Set (MDS), the researchers found that in 2016, over two-thirds (68%) of long-stay nursing home residents over the age of 70 reportedly had adequate hearing, meaning that “they had no difficulty in normal conversation, social interaction, or listening to TV.”  The researchers compared this with previously reported data on elderly people outside of nursing homes, and argue that the reported rate in nursing homes is implausibly low.

“While prior small studies have shown that nursing home staff underestimate hearing problems, the data strongly point to a national problem,” said Blustein.

According to co-author and geriatrician Joshua Chodosh, M.D. of the NYU School of Medicine, recognition and treatment of hearing loss is “low hanging fruit for those who care for elderly people. Once you’re aware that hearing loss may be a problem, there are many ways to help,” said Chodosh. “Speaking clearly and facing the person when you talk is a good way to start.  But patients should be referred to an audiologist.  If buying hearing aids is within financial reach, that may be a good step. But there are other low-cost hearing assistance solutions such as pocket amplifiers that cost about $150 that can be very helpful in communicating with older people with hearing loss.”

As Blustein notes, “Hearing loss disrupts communication, leaving those affected especially vulnerable to social isolation and depression. Nursing homes could make a big difference in residents’ lives by attending to the issue.  This would not only be good clinical practice;  it would also be compliant with the law, since the Americans with Disabilities Act requires that homes offer ‘effective communication’ with residents.”

This press release was republished with permission from NYU. View the original article here.

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