Fall 2020
A Publication of Hearing Health Foundation
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The Seniors & Veterans Issue Two communities affected by hearing conditions adapt and thrive
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FEDERAL LAW PROHIBITS ANYONE BUT REGISTERED USERS WITH HEARING LOSS FROM USING INTERNET PROTOCOL (IP) CAPTIONED TELEPHONES WITH THE CAPTIONS TURNED ON. IP Captioned Telephone Service may use a live operator. The operator generates captions of what the other party to the call says. These captions are then sent to your phone. There is a cost for each minute of captions generated, paid from a federally administered fund. No cost is passed on to the CapTel user for using the service. CapTel captioning service is intended exclusively for individuals with hearing loss. CapTel® is a registered trademark of Ultratec, Inc. The Bluetooth® word mark and logos are registered trademarks owned by Bluetooth SIG, Inc. and any use of such marks by Ultratec, Inc. is under license. (v2.6 10-19)
The mission of Hearing Health Foundation (HHF) is to prevent and cure hearing loss and tinnitus through groundbreaking research and to promote hearing health. HHF is the largest nonprofit funder of hearing and balance research in the U.S. and a leader in driving new innovations and treatments for people with hearing loss, tinnitus, and other hearing and balance conditions. As part of our outreach, we provide this quarterly magazine for free to our vibrant community of readers and supporters as well as to the dedicated professionals who work with them. Please subscribe at hhf.org/subscribe and make a donation at hhf.org/donate.
Fall 2020: The Seniors & Veterans Issue Two populations disproportionately affected by hearing conditions demonstrate how they’ve learned to adapt and thrive.
Timothy Higdon, HHF CEO
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HEARING HEALTH The Seniors & Veterans Issue Fall 2020, Volume 36, Number 4
Publisher Timothy Editor Yishane
Lee
Art Director Robin Senior Editors
Features 24 Meet the Fundraiser The Day It Happened. Irene Goodman
12 Managing Hearing Loss Writing Code. David M. Sykes
26 Living With Hearing Loss My Cochlear Implant Adventure. Ruth D. Bernstein. An Unexpected Side Effect. Henry Klein. Moving on From Ménière’s. Alice Sheinman
15 Managing Hearing Loss How to Create a Hearing Loss Hospital Kit. Shari Eberts 16 Managing Hearing Loss Remote Tinnitus Counseling. Richard S. Tyler, Ph.D. 18 Arts Getting the Details Right. Brad Parks 20 Veterans Soldiering On. Hazel Goedhart and Markku Vesala 22 Planned Giving How Does the New CARES Act Affect You? Patrick Schmitt and Michael Kassabian
32 Research Hearing Restoration Project Plans Announced for 2020–21. Peter G. Barr-Gillespie, Ph.D. 34 Research 2020 Emerging Research Grants Announced. Christopher Geissler, Ph.D. 35 Research Recent Research by Hearing Health Foundation Scientists, Explained.
Departments
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21 Advertisement Tech Solutions.
07 HHF News
41 Marketplace
42 Meet the Researcher Mishaela DiNino, Ph.D. Meringoff Family Foundation Hearing Health Foundation and Hearing Health magazine do not endorse any product or service shown as paid advertisements. While we make every effort to publish accurate information, we are not responsible for the accuracy of information therein. See hhf.org/ad-policy.
Cover Barbara Chertok in Florida in 2016. Photo by Victoria Chertok. Visit hhf.org/subscribe to receive a FREE subscription to this magazine.
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Amy Gross, Lauren McGrath
Medical Director David
08 Living With Hearing Loss Hearing Is Believing. Barbara Liss Chertok
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Staff Writer Kathi
S. Haynes, M.D.
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hello@glmcommunications.com, 212.929.1300 Editorial Committee
Peter G. Barr-Gillespie, Ph.D. Judy R. Dubno, Ph.D. Anil K. Lalwani, M.D. Rebecca M. Lewis, Au.D., Ph.D., CCC-A Jay R. Lucker, Ed.D., CCC-A/SLP, FAAA Joscelyn R.K. Martin, Au.D. Board of Directors
Chair: Col. John T. Dillard, U.S. Army (Ret.) Sophia Boccard Robert Boucai Judy R. Dubno, Ph.D. Ruth Anne Eatock, Ph.D. Jason Frank Jay Grushkin Roger M. Harris David S. Haynes, M.D. Elizabeth Keithley, Ph.D. Cary Kopczynski Anil K. Lalwani, M.D. Michael C. Nolan Paul E. Orlin Robert V. Shannon, Ph.D. Hearing Health Foundation 575 Eighth Avenue, #1201, New York, NY 10018 Phone: 212.257.6140 TTY: 888.435.6104 Email: info@hhf.org Web: hhf.org Hearing Health Foundation is a tax-exempt, charitable organization and is eligible to receive tax-deductible contributions under the IRS Code 501 (c)(3). Federal Tax ID: 13-1882107 Hearing Health magazine (ISSN 2691-9044, print; ISSN 2691-9052, online) is published four times annually by Hearing Health Foundation. Copyright 2020, Hearing Health Foundation. All rights reserved. Articles may not be reproduced without written permission from Hearing Health Foundation. USPS/Automatable Poly To learn more or to subscribe or unsubscribe, call 212.257.6140 (TTY: 888.435.6104) or email info@hhf.org.
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dear editor: I was motivated to reach out when I read “The Noise-Induced Hearing Loss Issue” (Summer 2020), which was great. I am and have been a “hearing loss guy” since close to birth till today as I approach 76 years of age. I am quite familiar with adverse hearing conditions caused by loud sounds. Simply stated, too much noise will lead to hearing loss. Please join me in asking the U.S. Consumer Product Safety Commission to do its job and warn consumers of dangerous noise levels on products available to the public. Wayne Lesser Founder, LesserSound California
dear editor: In his article in the Summer 2020 issue, Hearing Health Foundation CEO Timothy Higdon states that he is “still trying to figure out the best way to wear a face mask” with hearing aids on. At a local shop I saw face masks for people who have hearing loss that use vinyl inserts where the mouth would be. I bought one, intending for a caregiver to use it so my sister and I could understand her better, but she declined. So I am saving it for the next caregiver in hopes they will use it! In any case, I’ve found that masks that tie around the head help with not getting caught on your hearing aids behind the ear. Betty Goss Texas
dear editor: Some staff members at my audiologist’s office wear masks with a transparent area over the nose and mouth. This, of course, facilitates reading lips and facial expressions, including for those with typical hearing. But everyone has to participate to maximize their utility. They can also be useful when communicating with people who have an accent. Congratulations on an excellent journal. Sundaram V. Ramanan, M.D. Professor of Medicine University of Connecticut School of Medicine
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dear editor: In the Spring 2020 issue, Monica Chiarappi wrote an article about her daughter’s experience with auditory processing disorders (APD). This led her to publish a children’s book titled “The Silent Mockingbird.” In the article Ms. Chiarappi identifies herself as not being a professional or specialist involved with auditory processing and its disorders, but writes about symptoms and coping strategies that may better be labeled as modifications and accommodations. While I am sympathetic to her family’s experience, as a professional in this area, what struck me was that parents and others reading this article may walk away with some incorrect ideas and assumptions about APD that may lead them to think some children have it. The two main points are that APD is more correctly identified as auditory processing disorders, pluralized, as there are many types; and that auditory processing involves multiple systems in the brain, not just the auditory system. For more, please see my blog post at hhf.org/ blogs/apd-all-about. Jay R. Lucker, Ed.D., CCC-A/SLP, FAAA Professor, Department of Communication Sciences and Disorders Howard University, Washington, D.C. from the editor: We appreciate this clarification and see that we should have emphasized more than we did that the writer’s experiences are her own as a parent, not a professional, and that APD is an umbrella term for a variety of disorders affecting how the brain processes sounds. In addition to his blog post, Dr. Lucker has kindly agreed to join our editorial committee to help review articles about APD.
We always appreciate feedback from our community of readers. Letters are edited for length and clarity. Please email comments to editor@hhf.org.
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HHF Launches Hearing Health Hour Webinar Series
On Oct. 26, 2020, Hearing Health Foundation (HHF) is hosting its first Hearing Health Hour event via Zoom video conferencing. Presented quarterly, Hearing Health Hour is a lay-friendly webinar series about managing hearing loss and related conditions and research updates presented by Emerging Research Grants (ERG) recipients. The inaugural session is titled “Age-Related Hearing Loss: Problems and Solutions” and is presented by 2014 ERG scientist Samira Anderson, Au.D., Ph.D. Untreated age-related hearing loss leads to many changes throughout the brain and can affect speech understanding and cognitive ability. Anderson’s presentation reviews how hearing loss changes the way our brains respond to speech and how it may affect cognitive functions, such as working memory. The extent to which hearing aid amplification can reverse these changes is discussed, along with a Q&A at the end of the session. Anderson’s 2014 ERG project was generously funded by the Grand Chapter Royal Arch Masons International. She is an associate professor in the department of hearing and speech sciences at the University of Maryland. To register or to view the full, captioned presentation, see hhf.org/ webinar. To receive updates about future webinars, sign up at hhf.org/subscribe.
ERG Alumni Earn Prestigious National Institutes of Health Funding From left: Anat Lubetzky, Ph.D., and Merri Rosen, Ph.D., have both recently been awarded NIDCD grants.
Two ERG alumni were recently awarded grants by the National Institute on Deafness and Other Communication Disorders (NIDCD), one of the National Institutes of Health (NIH), to build on their HHF-funded work. For her R21 grant, 2019 ERG scientist Anat Lubetzky, Ph.D., of New York University, aims to clarify the link between hearing loss and falls and to develop improved balance assessments. Hearing and balance disorders triple the risk of falls, but little is known about the importance of sounds for balance. Northeast Ohio Medical University’s Merri Rosen, Ph.D., has been awarded a five-year, $2.3 million NIDCD grant to study the effects of early life stress on auditory perception. Rosen’s 2013 ERG grant was generously funded by the Grand Chapter Royal Arch Masons International, and was immediately followed by a five-year, $1.8 million NIH grant. This new grant extends and funds Rosen’s project for an additional five years. We’re proud of their ongoing work. HHF’s ERG program has long served as a career springboard and an incubator for innovative research that can successfully compete for major federal research funding.
We’ve Moved! After a pandemic delay and finishing touches to the interior, HHF moved into new offices in July. Please note our new address is: 575 Eighth Ave, #1201, New York, New York 10018 For now staff members are on a rotating schedule and, when present, wearing face masks and staying socially distant. We’ll continue to monitor public health directives and are happy to be in this bright, clean, well-ventilated space on a quieter block (better for our ears!). a publication of hearing health foundation
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Hearing Is Believing A sudden hearing loss as a young adult inspires a life’s work as a volunteer, mentor, and advocate for speechreading, oral interpretation, and technology. By Barbara Liss Chertok I lost my hearing suddenly and in both ears at age 21. It was May 1957. I was on lunch break with friends and heading back to the Boston ad agency where we worked. Suddenly I pitched forward, losing my balance. The hearing in my left ear disappeared. Days later, my right ear lost nearly all hearing too. My parents, who immigrated from Russia, took my sudden hearing loss harder than I did. I didn’t worry because a respected neurologist told me I would regain all my hearing in six to eight weeks. At the same time, I discovered I was skilled at lipreading (speechreading), even the Yiddish we spoke at home. Yiddish was my first language but it was hard to lipread, especially my father’s speech after a stroke left it impaired. My hearing did not return as the neurologist predicted, so after seven months I received a hearing aid for my right ear to make use of a small amount of residual hearing. The hearing aid allowed me to hear a little bit of my own voice, helping me retain my voice quality. But I couldn’t use the telephone to maintain my busy social life. My mother had to arrange everything, including my dates! Decades later when I was investigating cochlear implants, I met with the cochlear implant pioneer John Niparko, M.D., at Johns Hopkins University. (The late surgeon was an Emerging Research Grants scientist in the 1980s and 1990s.) It was Dr. Niparko who—35 years after I lost my hearing—diagnosed the cause of my hearing loss as Cogan’s syndrome, an autoimmune disorder. Top: Barbara Chertok speaks often as an advocate for those with hearing loss. Above: In 2014, Barbara Chertok appeared on a Lifetime TV show about baby boomers, hosted by TV personality Morgan Fairchild.
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Family Pitches In
My husband Benson Chertok and I met on a blind date—or was it a deaf date? We married in 1961, and he became a physics professor at American University in Washington, D.C. We welcomed a daughter, Victoria, and then a son, Maxwell. Raising two children without the ability to hear compelled me to be creative. I put the playpen near the doorway to the kitchen to keep an eye on them while I was cooking. After a feeding, I made sure the baby faced me, so I could watch for burps. Our home was rigged with lights that flashed to alert me to the telephone, doorbell, and even when the baby cried. The telephone continued to present a dilemma. Out of necessity, when Victoria was just a toddler I trained her to help me with calls. (See “A Lesson in Resilience,” next page.) Victoria eventually became my oral interpreter. I’d read her lips as she interpreted group conversations or people who were hard to understand. Likewise, my husband and son also helped with communication, and they always made sure they got my attention before speaking, faced me as they spoke, and did not speak rapidly. At the movies, Benson would silently repeat
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After I lost my hearing, I would sit in front of the television watching the Boston Symphony Orchestra perform, trying to remember how each instrument sounded. I continued to attend operatic vocal competitions, picking the winners with my eyes—and I was usually right! what was going on, and—in the dark and from the side—I read his lips and followed along. I never lost my love of music, especially opera, passed on to me by my father. As a teen I took piano lessons and studied operatic voice at the Boston and New England Conservatories of Music. After I lost my hearing, I would sit in front of the television watching the Boston Symphony Orchestra perform, trying to remember how each instrument sounded. I continued to attend operatic vocal competitions, picking the winners with my eyes—and I was usually right! Once after driving four hours to pick up my son at college, I passed the time singing nonstop, and arrived with a bad case of laryngitis. I still go to concerts frequently and engage musicians for the Sarasota Music Club in Sarasota, Florida, where I now live.
Volunteer Service
When my children were in school full-time, I began volunteering and advocating for the rights of people with hearing loss. This would become my life’s work. For 15 years, I volunteered with the Alexander Graham Bell Association for the Deaf and Hard of Hearing in Washington, D.C., serving on several committees and becoming certified as a reverse oral interpreter. This allows me to go to a hospital to read the lips of a patient who can move their lips but not produce sound, due to a tracheotomy or some other reason, for the benefit of a doctor or family member. In 1971, living in California while Benson did a sabbatical at Stanford University, we bought our first two TDDs (telecommunication devices for the deaf, or teletype phones, TTYs) from Bob Weitbrecht. A physicist who was deaf, Weitbrecht invented the acoustic coupler that worked with the telephone and a teletype machine. But while I could now communicate with Benson by typing messages over telephone lines, I still could not
A Lesson in Resilience By Victoria Chertok
Starting as soon as she could talk, Victoria helped her mother Barbara as an oral interpreter.
One of my earliest memories is answering the telephone for my mother. She taught me to do this when I was only 2 1/2 years old. I’d say to the caller, “Take a message for Mommy?” Then I repeated what the caller said, my mother responded, and we handed the phone back and forth as the conversation went along. I didn’t realize that my mother was different from other mothers until I was at a friend’s home. I was 6 years old and my friend called downstairs to her mother—and her mother answered her. She didn’t have to go downstairs, tap her mother on the shoulder, and then face her so her mother could read her lips. I was astounded! Over the years, I learned a tremendous amount from my mother about hearing loss. I remember many dinner table conversations when she would explain how she was a publication of hearing health foundation
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Barbara Chertok and John Ball, the president of the National Captioning Institute, hold a TV caption decoder in 1990.
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reach others who did not have the device. To help solve the problem, I started selling TDDs for a local distributor—and sold them to my doctor, dentist, car dealer, insurance agent, financial adviser, and even to the White House (to an oral deaf lawyer I knew through A.G. Bell). When state relays came into being, I quit selling TDDs. Now I use a CapTel captioned telephone for my landline and an InnoCaption app on my iPhone. It was a treat when Morgan Fairchild asked me to demonstrate the app on a 2014 episode of her Lifetime television show, “Baby Boomers in America.” Rocky Stone founded the group Self Help for Hard of Hearing People in Maryland in 1979. I joined then and remain an active member of what is now the Hearing Loss Association of America. I volunteered at the national office and still write for its Hearing Life magazine. I have also been invited to share my experiences with speechreading and oral interpretation at conferences here and abroad. In 1982 I served as the first juror with a hearing loss in Maryland. It felt wonderful to fulfill my civic duty, especially since 30 others with hearing loss had been denied the opportunity. I remember sitting in the jury pool of 55 people waiting for the 12 jurors to be announced. When the person next to me tapped my arm and said: “That’s you, number nine, Barbara Chertok,” I felt as if I was suddenly in the Miss America Pageant! The media called me “a trailblazer,” the first person ever to use an oral interpreter in a courtroom. My interpreter sat in the jury box with me while I read his lips for four days of testimony. A television cameraman was allowed in the courtroom to film us (another first). I was thrilled to appear on that evening’s news and, the following day, in the Washington Post and other newspapers. In an article in Maryland’s Montgomery Journal, the defendant’s attorney said about me: “She probably knew more about what was going on in the courtroom than anyone else except for the judge.”
Hearing Music Again
After that initial meeting with Dr. Niparko, I received my first cochlear implant (CI) in my “better” right ear at age 62 in 1997, over four decades after losing my hearing. Loren Bartels, M.D., the director of the Tampa Bay Hearing and Balance Center, did the surgery. It was activated one month later. The first thing I did after arriving home was to listen to a recording of Nat King Cole’s “Unforgettable.” To be able to hear
determined to remain in the mainstream using her speechreading skills, a hearing aid, and any assistive devices available at the time, such as a vibrating alarm clock. Even now, at age 84, she is passionate and continues to mentor people with hearing loss. I honestly think she has touched thousands of lives. I studied the harp from ages 5 to 21 and performed regularly. It was heartbreaking that my mother couldn’t hear me play, even though she watched closely and felt some of the vibrations. A huge supporter of my music, she drove me for years to harp lessons and orchestra rehearsals. Since my father had a demanding career as a physics professor, traveling extensively, and then after he died from cancer at age 46, leaving her with two young teens to raise, my mother leaned on me to be her oral interpreter. 10
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I helped her understand what others were saying at dinner parties, school visits, shopping expeditions, doctor’s appointments, and movie theaters, just to name a few. I never minded helping her (and didn’t know any differently), but I have to admit it did take up an incredible amount of time and effort to interpret. My mother showed me how to overcome enormous obstacles while keeping a positive attitude. Her strength of spirit, drive to succeed, and advocacy for those with hearing loss continue to inspire. Victoria Chertok is a teacher and photojournalist in Vermont. She has two adult sons and still enjoys playing the harp.
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The media called me “a trailblazer,” the first person ever to use an oral interpreter in a courtroom. My interpreter sat in the jury box with me while I read his lips for four days of testimony. A television cameraman was allowed in the courtroom to film us (another first). I was thrilled to appear on that evening’s news and in the Washington Post and other papers. One article quoted an attorney as saying, “She probably knew more about what was going on in the courtroom than anyone else except for the judge.” music again brought tears to my eyes, and I was thrilled his voice sounded as I remembered it. I received a second CI in 2008, in my left ear—which had not heard for half a century. After activation, I was amazed I could understand the audiologist without reading her lips. In a quiet setting, I can now carry on a conversation without needing to look at the person speaking to me. To share my experience with CIs, I founded two support groups in Florida. It pleases me to advise others that infants with a profound hearing loss can receive bilateral CIs, at age 1 or even younger, allowing them to develop spoken language and attend mainstream schools. In the U.S. there are 48 million people with hearing loss. Research tells us that untreated hearing loss can lead to cognitive decline, isolation, and falls. Hearing aids are now smaller and better, yet people wait an average of seven years before treating their hearing loss, such as with a hearing aid. People seem to think that because hearing loss is an invisible disability, wearing a hearing aid will make them look old. I remind them their hearing loss is more noticeable than any hearing aid. The stigma associated with hearing aids can be more of a deterrent than their significant out-of-pocket cost. But now that people wear all sorts of devices in or on their ears, and less expensive over-the-counter hearing devices are becoming available, perhaps hearing aids will finally be no different than eyeglasses.
A Letter to the White House
Speechreading saved my life and helped me stay in the mainstream. To improve my skills, I took private lessons with Enid Lofchie, a professor of audiology at Emerson College in Boston. Enid was an exceptional teacher and, like me, had a significant hearing loss. My association with her inspired me to teach speechreading, which I did for 10
years at Montgomery College in Maryland, at community centers, and privately in my home. I’m happy that some of my students continued to practice together, even after I moved away. During his presidential campaign, George H.W. Bush promised: “Read my lips: No new taxes.” After he became President, I wrote him a letter saying, “I have been reading your lips and everyone else’s ever since I lost my hearing suddenly.” I asked if he and his wife Barbara could join me in promoting lipreading as a valuable communication tool for people with hearing loss. I added a postscript to my letter: “A reminder: Your signature on the ADA [Americans with Disabilities Act] bill will help ensure that people with disabilities can be a part of the mainstream of society.” President Bush replied that “while longstanding White House policy prohibits us from endorsing individual, nongovernmental projects, we encourage you to continue your efforts to enhance the lives of the hearing impaired.” A few weeks later, in July 1990, he signed the ADA into law. Thirty years on, I still like to think my postscript made a difference. Barbara Liss Chertok lives in Florida. A mentor, advocate, writer, and speaker, she serves on the American Hearing Research Foundation board. Email her at barbchert@gmail.com.
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Writing Code A little-known national committee continues a 75-year initiative to build quieter hospitals, designing codes that improve built environments for people with hearing loss and everyone else. By David M. Sykes
Scene 1: The 13th of August in 1946 is a hot and humid day in Washington, D.C.
By the Numbers
75 Years since the signing of the U.S. federal act that gives hospitals, nursing homes, and other healthcare facilities grants and loans for construction and modernization.
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trillion Estimated U.S. dollar value of the global healthcare industry.
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President Harry Truman strides across the Oval Office, sits down behind the grand desk by open windows, and picks up his fountain pen. As the flashbulbs pop, he grins and signs the first big step toward Medicare: the Hill-Burton Act. Twenty years later, President Lyndon B. Johnson pushes the rest through Congress, calling Truman “the real daddy of Medicare.” Actions have consequences, and change can take several lifetimes. Historians call this history’s “long tails.” Truman said, “It’s amazing what you can accomplish if you don’t care who takes credit”—or how long it takes. The Hill-Burton Act said nothing about hearing disorders but created an organized process that for decades has been quietly improving healthcare environments. Now, 75 years on, this approach has been addressing hearing disorders, noise, and privacy in the $10 trillion global healthcare industry.
Scene 2: Boston, mid-August 2020. A Zoom meeting convenes 16 professionals from around the U.S. representing medicine, public health, federal and state regulatory agencies, healthcare management, architectural planning, design and construction, and acoustical science and engineering. This is the weekly meeting of the Facility Guidelines Institute (FGI) committee on acoustics, noise control, and privacy, of which I am the founder and chair. Authorized by Congress as part of the Hill-Burton Act (and privatized by President Ronald Reagan in 1985), FGI is an independent agency that partners with the American Hospital Association, American Institute of Architects, the American Society of Heating, Refrigerating and Air-Conditioning Engineers, and other related organizations to inform healthcare facility planning, design, and construction. It does so by publishing the FGI Guidelines every four years, but acoustics and noise control had not been addressed in this standard reference until our group approached FGI in 2004 and we were given the responsibility for developing comprehensive acoustical criteria, starting with the 2006 edition. Our group formed and became involved with FGI when we realized, at an Acoustical Society of America meeting, that any policy development work on healthcare facilities would have to cross disciplines and include professionals with stature in healthcare, not just in acoustics. So, we adopted the name Quiet Healthcare Council and began operating, in 2018, under the aegis of Quiet Communities Inc., an interdisciplinary, national 501(c)3 nonprofit. Central to how FGI works is the “continuous improvement process.” It ensures the guidelines creation process is fair, transparent, evidence-based, open, timely, and free from conflicts of interest. It enables FGI’s 130-member general membership to keep dozens of independent, technical subcommittees, including ours, marching toward the FGI Guidelines’ quadrennial deadline. The next edition comes out in early 2022. Framed in the Zoom-meeting grid in August, the members of our acoustics committee were not shy about disagreeing, occasionally arguing about mathematical equations and intricate phrases informing “technical public policy.” Everyone on our committee and at FGI knows the final language must be clear because it will soon be the reference standard—the building codes—for federally funded healthcare facilities across America.
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Now, owing to COVID-19, we are writing a guideline on telemedicine because the pandemic ushered in a plethora of online services replacing in-person visits. This affects millions of people who have hearing conditions or are unable to access or use the internet. And we’re interpreting “disability rights” to address noisy, stressful conditions in residential care communities that can elevate dementia risk.
130 Members of the Facility Guidelines Institute (FGI), which produces the quadrennial FGI Guidelines to inform the construction of hospitals and related buildings.
Process and Goals
FGI’s continuous improvement process has given us a carefully managed model to iteratively develop evidence-based policy, crucial as the book grew from 100 pages to 900 pages and three volumes. The goals are to adapt to legislative and regulatory changes— particularly changes affecting health outcomes; organize research that provides evidence for improvements; and conduct public outreach that accelerates public acceptance. Our acoustics committee covers all aspects of acoustics that make buildings healthier: exterior noise; vibration; acoustical finishes; room noise; speech privacy; sound isolation; room dimensions; and electro-acoustics (telemedicine, paging and call systems, clinical alarms, masking, and sound systems). The three volumes of the 2018 and 2022 editions cover the three building types identified by Hill-Burton: hospitals, residential care, and outpatient clinics. Written in English, the FGI Guidelines are cited and used in 87 countries, and this global audience demands global thinking coupled with sufficient detail to be locally practical.
87 Countries where the FGI Guidelines are cited and used.
“Continuous” Means Never Done
The healthcare field is one of America’s largest, most dynamic, and technically demanding industries, requiring continual adaptation. A torrent of new laws and regulations flows from federal and state governments supplemented by technologies from research and development labs.
photo credit: d. heidelberger
Music, Noise, and Health My interest in acoustics stems from being a musician from about age 7 (piano, wind instruments, and strings, including several years of performing) until I was drafted into the U.S. Army in 1964 at the beginning of the Vietnam War. (The photo of me at left is from that time.) Like many veterans I acquired tinnitus from exposure to firearms and explosives, leading to an interest in noise-induced hearing loss and how to prevent it through noise control—a discipline within acoustics, a branch of physics. Tinnitus ended my active involvement in music, and I focused instead on writing, management consulting, and entrepreneurship. An esteemed MIT professor approached me and encouraged me to bring my expertise a publication of hearing health foundation
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to the leading society in acoustical science, the Acoustical Society of America, which faced a public policy problem. After studying their problem, my advice to this group of physicists and engineers was to find a way to work with medical and public health professionals. On their behalf, I contacted Senator Ted Kennedy, who was keenly involved in both healthcare and HIPAA privacy, and then met with the board of FGI to create a “bridge.” FGI has been a wonderful, interdisciplinary way to connect experts in acoustics, medicine, and public health—by focusing on the health effects of noise, sound, and vibration in clinical environments, where we can do careful, evidence-based, crossdisciplinary research and policy development to benefit the real world. —D.M.S.
Approximate number of pages in the 2002 FGI Guidelines.
900 Number of pages, across three volumes, of the 2018 FGI Guidelines, with the next edition coming out in 2022.
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Thank You, Harry
Working behind the scenes on technical public policy to improve people’s lives has quiet rewards, both figuratively and literally. The greatest reward is being able to see ahead and help create the institutional framework for future improvements. One potential landmark act is the Medicare Hearing Aid Act of 2019, H.R. 4618, which would enable Medicare to cover hearing disabilities. Do we recall the individuals behind this legislation? As Truman noted, it doesn’t matter. What matters is that if this act is passed (and much is uncertain given the pandemic and election), Americans will finally gain affordable access to treatments for hearing loss—after a 75-year wait. Change takes time.
David M. Sykes leads several professional organizations in acoustical science, including the Quiet Healthcare Council and the Quiet Coalition, both programs operated by Quiet Communities Inc. He is also a board member of the Bedford VA Research Corp. Inc., which funds veterancentered research, and is a former board member of the American Tinnitus Association. He cofounded the Laboratory for Advanced Research in Acoustics at Rensselaer Polytechnic Institute in New York and has held faculty or administrative posts at Cornell, Boston University, and Harvard Business School. For more, see quietcommunitiesinc.org. For references, see hhf.org/fall2020-references.
photo credit: m. ascher 2019
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For example, in 2016 the U.S. Centers for Disease Control and Prevention finally declared noise-induced hearing loss a significant public health problem. Research shows roughly half of people over age 65, and 80 percent of people over age 80, have hearing disabilities—and in healthcare facilities this creates risks for medical errors. Now, owing to COVID-19, we are writing a guideline on telemedicine because the pandemic ushered in a plethora of online services replacing in-person visits. This affects millions of people who have hearing conditions or are unable to access or use the internet. And we’re interpreting “disability rights” to address noisy, stressful conditions in residential care communities that can elevate dementia risk. Recently our group led FGI’s delegation to the national summit on “alarm fatigue” that persuaded the Joint Commission (which oversees hospital licensing) to issue a national safety guideline; contributed to the HIPAA Privacy Rule; and addressed the Affordable Care Act’s patient survey. Over the committee’s 15 years, we have also published the book “Sound & Vibration 2.0” and contributed to several others; succeeded in getting the FGI criteria accepted into the LEED Green Building Rating System as well as the International Code Council; organized and funded research on healthcare acoustics; and presented peer-reviewed papers worldwide.
managing hearing loss
How to Create a Hearing Loss Hospital Kit By Shari Eberts
Hearing loss and hospitals are a difficult combination. The environment is hectic and you are probably not feeling your best. Doctors and other medical staff are often masked, dampening the sound of their voices and hiding speechreading cues. Due to COVID-19, family or friends may not be allowed to accompany you to help advocate for your needs. It is up to you to make sure you understand your diagnosis and the decisions that are required for your care. Hearing loss can make that challenging. Proper preparation is the key to success. Here are tips for creating a hearing loss hospital kit, based on one produced by the Edmonton branch of the Canadian Hard of Hearing Association. Plan and disclose.
Have a list of items to ask for before you arrive at the hospital, such as an amplified telephone or a captioned TV in your room. Since hearing loss is invisible, visual reminders of your hearing loss are critical. Print out the international symbol for hearing loss and the message “I Am Hard of Hearing” to display above or beside your bed, or pin a button to your gown that says you are hard of hearing. Even with visual aids, you may still need to remind staff about your hearing loss at the start of each shift. Do so with a smile.
Create tipsheets.
A communications tipsheet to be shared with caregivers can go a long way toward better understanding. Here’s a sample: I am hard of hearing. Please:
» Get my attention before talking. I need to
see your face to read lips. » Speak clearly—don’t over-emphasize or shout. » If possible, turn off background noise. » Rephrase (not just repeat) if misunderstood. » Write down important information. » Ask me to repeat vital facts to be sure I understand correctly. Bring a pen and notebook as a backup. Or use a speech-totext app on your smartphone. Speaking of devices, prepare chargers and extension cords and label everything. You can use personalized return address labels (often sent to you for free in the mail) to ID your equipment.
Protect your hearing aids.
Hearing aids are easy to misplace at the hospital. If your backup devices are fairly recent, consider using them in the hospital instead, keeping your primary and more expensive technology safe at home. Hearing aids may need to be removed for a procedure or to sleep. Bring a container labeled with your name and identifying the contents as hearing aids. This is also a good place to store extra hearing aid batteries and a hearing aid battery tester. Add to your kit a Ziploc bag labeled with your name with a safety pin inside. You can use the Ziploc to safely stash your hearing aids if they need to be removed when you are outside your hospital room. Pin it to your gown so your hearing aids are not misplaced—a simple, smart way to keep track of them.
Shari Eberts serves on the Board of Trustees of the Hearing Loss Association of America and is a past chair of HHF’s Board of Directors. A version of this originally appeared on her blog, livingwithhearingloss.com. For references, see hhf.org/fall2020-references.
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Remote Tinnitus Counseling By Richard S. Tyler, Ph.D. As a clinician and researcher, I see tinnitus patients weekly in our University of Iowa clinic. Many patients live far from Iowa City or are not able to travel easily, due to age or accessibility. Remote counseling by phone or video chat can be very helpful. Even before the current COVID-19 pandemic, our Tinnitus and Hyperacusis Clinic—which helps those who hear a sound without an external source, or experience sensitivity to sounds—had been seeing patients remotely for several years. We’ve developed several tools to help the tinnitus patient, who is typically an older adult. We first ask them to complete the Tinnitus Primary Functions Questionnaire. These are 20 questions that my team and I developed and validated to help detail patient experiences. The questions cover four categories: Thoughts and Emotions, Hearing, Sleep, and Concentration. Next—whether in person, over the phone, or on a video chat—we typically begin by asking the patient when their tinnitus started, what they think caused it, and how it has affected their life. It is important to connect with the patient and demonstrate that we care. We ask what they have tried or found helpful in coping with their tinnitus. Many say they use the internet to search for help and say they’ve found promising “cures.” I tell them that it is reasonable to be upset and concerned and to have thoughts such as, “Why did this happen to me; it’s not fair!” We also note that typically the first three to nine months of their becoming aware of and affected by the tinnitus are the worst and repeat that their concerns are understandable. One thing I am clear to point out is that there are no documented cures for tinnitus, but there are treatments that can help manage the condition. Our clinic uses Tinnitus Activities Treatment, also developed with my team. The focus remains the four categories above, and we have found that the picture-based approach, also accessible online, facilitates patient engagement and provides structured counseling. We also include homework and activities to show understanding and progress. During remote counseling, background noise is removed and 16
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counselors speak slowly and clearly. Significant others are welcome to join the session to help review directions. Most tinnitus patients have a hearing loss and will benefit from hearing aids. We stress it is not about hearing per se, but about interacting with partners and friends and participating in life. Hearing aids can now be fit remotely, but an in-person follow-up visit is preferable. Many will also benefit from partial masking sound therapy, with a noise or music set to the lowest level that provides relief.
One thing I am clear to point out is that there are no documented cures for tinnitus, but there are treatments that can help manage the condition. The questionnaire responses show that thoughts and emotions consistently rank highest among patient concerns. Our protocol is to address individual needs while considering the whole patient so we can help them cope with their tinnitus.
A 2012 Emerging Research Grants scientist, Richard S. Tyler, Ph.D., is a professor in the departments of otolaryngology–head and neck surgery and communication sciences and disorders at the University of Iowa. He oversees the Tinnitus and Hyperacusis Conference, held annually on campus and whose 28th edition will be June 17–18, 2021. For references, see hhf.org/fall2020-references.
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Spring 2019
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Fall 2019
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The Managing Hearing Loss Issue
Share Stories and Solutions
Facing daily challenges with grit, and grace
The Older Adults & Veterans Issue Coping with hearing conditions due to age or service
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The Workplace Issue Hearing and balance conditions provide inspiration and create awareness on the job
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Hearing Health Foundation’s Hearing Health magazine is the ultimate consumer resource on hearing loss, tinnitus, and other hearing and balance conditions. Our FREE, award-winning quarterly highlights inspiring first-person stories and real-world solutions based on the latest research and technology. Hearing Health magazine provides opportunities to meaningfully connect with others in the hearing loss community.
The Noise-Induced Hearing Loss Issue Scientists research hearing conditions caused by loud sounds
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arts
h ear i n g h ealt h foundation
Getting the Details Right A bestselling author reaches out to the hearing loss community to create his latest protagonist. By Brad Parks The first time I ever saw a cochlear implant, it was on the shaved head of my new neighbor, a kindly retired librarian. I actually thought it was some kind of fancy Bluetooth device. I was that clueless. My education came quickly enough, though. We had moved to Staunton, Virginia, just down the street from the Virginia School for the Deaf and the Blind. Thanks to the school, a thriving community of people with hearing loss had built up in the area—students, teachers, and alumni who decided to settle there. Living so close to the school, watching the kids play outside and catching glimpses of their classes, I gained a new awareness of—and appreciation for—what modern hearing loss actually looked like. Or I’d go downtown, where the Shenandoah Valley Club of the Deaf had a storefront and adults with hearing loss were an everyday presence. It wasn’t unusual to see conversations that flowed easily between spoken and signed language, based on whatever allowed for greater expression. Then my wife took a new job and we moved to another town in Virginia, where one of my new neighbors was
Melissa, a librarian with a hearing loss. It was like the world was trying to tell me something. At this point, I was in the midst of brainstorming the manuscript that would eventually become “Interference,” my latest novel. Part of that process was filling it with characters who would become real to me—people with skills and quirks, foibles and fortitude. My characters are usually hybrid creations, a combination of my imagination and tidbits stolen from people I’ve met. (I always warn friends and relatives: If you don’t want to see parts of your life in a book someday, don’t tell me about them.) But if there’s one rule I have for my protagonists, it’s that I can’t spend 400 pages with a jerk. I have to like them. Enter my new neighbor, Melissa. It didn’t take long to discover she’s an absolutely delightful person. Funny. Smart. Warm. By then, I was used to being around people who might have to see me wave hello rather than hear me say it, so it was easy for us to fall into a friendship. And then one day it clicked: Brigid Bronik, the heroine of my new novel, would have a hearing loss, too. I knew characters like this were not often found in
Far left: Brad Parks with his grandfather, who in later life struggled with his hearing, in 2004. Near left: Parks’s neighbor Melissa Schutt helped inspire a lead character in his crime novel.
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arts
photo credit (near left): brad parks
I knew characters like this were not often found in fiction, especially not in the mystery/thriller genre. I also knew many of my readers wouldn’t know what it was like to live in a world quieter than the one they inhabit. So it was important to me to get the details right. fiction, especially not in the mystery/thriller genre. I also knew many of my readers wouldn’t know what it was like to live in a world quieter than the one they inhabit. So it was important to me to get the details right. But while living in Staunton had put me around people with hearing loss a fair amount, I still felt unprepared to write about it. Up until then, the only person with hearing loss I had ever gotten to know well was my grandfather. And he never talked about it. Papa, as we called him, had one of those great Horatio Alger stories. The son of immigrants who grew up on food stamps during the Depression, he worked his way through college and business school. Then he helped a little family-owned company called IBM become one of the world’s great corporations. Papa was wicked smart. But toward the end of his life, he was significantly impacted by losing his hearing. It remains a poignant memory: my brilliant grandfather unable to contribute to conversations at family meals, growing angry at being left out, too embarrassed to admit he simply couldn’t hear. Melissa is, thankfully, a lot more comfortable with her diagnosis. And a lot more forthcoming about it. When I approached her and told her what I wanted to write, she generously shared her own story. She was born with her hearing loss, though it went undetected for many years of her childhood. People just thought she was quiet. We talked through the various ways in which she had come to adapt and thrive, whether it was with the help of technology or just her own ingenuity (she basically taught herself to speechread). She also helped me understand what it was like to live with hearing loss—the sense of isolation that can come with it, or how it feels to be the only person in the room who didn’t hear a joke, or having people yell at her because they think it helps her understand them better. (Hint: It doesn’t.) Next I spoke with Melissa’s audiologist, Leah Ball, Au.D. I wanted Brigid to have developed her hearing loss in early adulthood so that she would have experienced a range of hearing throughout her life. Together, Dr. Ball and I came
up with a diagnosis that fit: otosclerosis, which impacts more than three million Americans. Finally, I felt like I had enough background to begin writing Brigid. And—as the best characters do—she soon took on a life of her own. One of the things that fascinates me about what we call “disabilities” is how often they come with extraordinary abilities. So, for example, people with dyslexia turn out to be great entrepreneurs, because the way their brains are wired helps them approach problems differently. Or people with Down syndrome self-report that they are happier and more satisfied with their lives than the rest of us. Speech-reading—which I refer to as lip-reading in the novel, since that’s a more familiar phrase to most readers— struck me as the perfect example of that. And, without spoiling anything, there’s a moment in “Interference” when Brigid’s ability to read lips helps her save a character in mortal danger. I don’t want to give away too much more than that. I just hope you enjoy reading Brigid Bronik as much as I enjoyed writing her. And I’m thankful to my neighbor Melissa for helping me bring the issues surrounding hearing loss to a wider audience.
A former journalist with the Washington Post and the Star-Ledger (Newark, New Jersey), Brad Parks is a bestselling author whose novels have been published in 15 languages. For more, see bradparksbooks.com.
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veterans
h e ar i n g health foundation
Soldiering On Why veterans may keep mum about hearing health conditions. By Hazel Goedhart and Markku Vesala
Rather than asking ourselves what the experience of veterans with tinnitus is like, we started asking ourselves why—in spite of the fact that tinnitus is among the top two most common health complaints among veterans (hearing loss is the other)— this problem is not talked about more?
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When we put out a call through our Tinnitus Hub newsletter asking for stories from veterans with tinnitus, we did not expect it to be such a challenge. Only a handful came forward with written responses, and we only managed to speak to one veteran directly. A search through our online support forum, Tinnitus Talk, which contains tens of thousands of personal stories, including many about work-related hearing injuries, also yielded a surprisingly low number of stories from veterans, no more than a handful. So, rather than asking ourselves what the experience of veterans with tinnitus is like, we started asking ourselves why—in spite of the fact that tinnitus is among the top two most common health complaints among veterans (hearing loss is the other)—this problem is not talked about more? Not all tinnitus is equal, of course, but tinnitus can be a debilitating condition. U.S. Department of Veterans Affairs (VA) expenditures illustrate the depth and severity of tinnitus as a health condition among veterans. In 2017, about 1.79 million veterans received compensation for tinnitus, a greater number of recipients than for hearing loss alone. The vast majority of these veterans also suffer from conditions like anxiety and depression. On top of the other health issues veterans often face, both physical and mental, tinnitus can have a deep impact on quality of life. Harry, a Vietnam veteran, told us by email that he has a hearing loss with severe tinnitus: “I have lived all these years with that constant LOUD ringing in both ears. It drives me crazy. I can’t sleep, talk on the telephone, or hear anybody if there is the slightest background noise.” Not talking about tinnitus may also be due in part to this particular population. According to Col. John T. Dillard, U.S. Army (Ret.), the chair of Hearing Health Foundation’s Board of Directors, there seems to be something of a “warrior ethos” to not complain or reveal weakness. This is corroborated by Kane McGrath, a former U.S. Army specialist with whom we spoke on the phone. He does not talk with his army peers about health issues and believes that many veterans are afraid to speak out and show vulnerability. Understandable as these attitudes may be, the silence also means that suffering caused by tinnitus will continue. Significant investments in research to find effective treatments or cures for tinnitus are needed. Expenditures on compensation payments are apparently not enough of an incentive alone to create the political will and funding required. A concerted lobbying effort, empowered by the voices of those veterans yearning for silence, is needed. Harry, the Vietnam vet mentioned above, told us, “I keep praying that a cure for tinnitus will come along before I die so I might experience at least one day of quiet.” To do this, let’s make some (virtual) noise to raise more awareness and increase funding for tinnitus research.
Hazel Goedhart is a director and the chief strategist for the U.K.-based organization Tinnitus Hub, founded by Markku Vesala. For more, see tinnitushub.com and tinnitustalk.com. For references, see hhf.org/fall2020-references.
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planned giving
hearing health foundation
How Does the New Affect You?
CARES Act
By Patrick Schmitt and Michael Kassabian
The year 2020 has been one of so many questions: When will things return to normal? Do I qualify for the stimulus check? Where did I put my mask? And, how can I be fiscally responsible while still supporting a favorite cause, like hearing and balance science? The good news is that you can do both at the same time, thanks to recent legislation. In March 2020, Congress passed the CARES Act to provide economic assistance in response to the COVID-19 pandemic. (CARES stands for Coronavirus Aid, Relief, and Economic Security.) You may remember the stimulus aid given to qualifying Americans—but the law’s effects, and potential benefits for you, reach far beyond those checks. Here’s how to take advantage of savings as you consider end-of-year giving. Take an additional income tax charitable deduction. Donors who do not itemize can now deduct cash gifts (including gifts by check, credit card, or electronic funds transfer) up to $300 above the standard deduction for charitable contributions per household. RMDs are suspended, but IRA gifts are still a smart way to give. For people with individual retirement accounts (IRAs), there are no required minimum distributions (RMDs) this year. However, giving pre-tax funds out of your IRA will still lower your future tax burden compared with giving cash. If you’re age 70 1/2 or older, giving from your IRA is still a tax-savvy way to support your favorite causes this year! If you’re interested in giving from your IRA to Hearing Health Foundation, we have a free tool to help you learn more, get started on your gift, or request a tax acknowledgment letter for a gift you’ve already made. Please see freewill.com/qcd/hhf. There is an increase in the AGI limit for donors who itemize. If you itemize on your tax bill, you can deduct cash gifts to public charities up to 100 percent (vs. 60 percent before the CARES Act) of your adjusted gross income (AGI). This deduction may be reduced by other itemized deductions, but any unused deduction can still be carried over for up to five additional years.
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In March 2020, Congress passed the CARES Act to provide economic assistance in response to the COVID-19 pandemic. (CARES stands for Coronavirus Aid, Relief, and Economic Security.) You may remember the stimulus aid given to qualifying Americans—but the law’s effects, and potential benefits for you, reach far beyond those checks. The limit for cash contributions from corporations has increased. Corporations can designate up to 25 percent (vs. 10 percent) of their taxable income in 2020 for cash gifts to public charities. And while other contributions to charities reduce this limit dollar for dollar, cash contributions that are more than the 25 percent limit can still be carried over for up to five additional years. Please reach out to a tax adviser to understand how these changes affect your specific situation. We hope you can use this information and free resources to best support your savings, and Hearing Health Foundation, this year.
This article is provided for informational purposes only. It should not be construed or relied upon as legal or tax advice. Patrick Schmitt (far left) is a cofounder and co-CEO of FreeWill, where Michael Kassabian is a content associate. For more, see freewill.com/hhf or email development@hhf.org.
6 Ways to Make an Impact Today and Tomorrow You can make a meaningful difference in hearing loss research. Whichever method below you choose, every gift to Hearing Health Foundation (HHF) counts.
The De Francescos named HHF in their estate plans.
Check or credit card gifts online or by mail are easy and immediate. For more of an impact, schedule a monthly gift that helps sustain research without interruption.
If you are in possession of life insurance policies that you no longer need, you can designate HHF as the beneficiary.
Donating appreciated stock can reduce your tax bill. You receive a charitable tax deduction for the full value of the stock, and avoid paying taxes on the stock as it appreciates.
IRA distributions that begin when you turn 70 1/2 can be taxed as income, but if you choose to donate them to HHF, you avoid the penalty.
A charitable bequest in your will can be a more substantial gift if you are unable to donate today. If you do not have a will, create one for free at freewill.com/hhf.
Retirement plan benefits left to heirs are more highly taxed than other assets. Make a meaningful gift to HHF instead, leaving lower-taxed assets to loved ones.
This publication is made possible through the generous support of readers like you and our advertisers. To learn more, visit hhf.org/how-to-help, email development@hhf.org, or call 212.257.6140.
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The Day It Happened
Even living with another person’s hearing loss may not prepare you for your own. By Irene Goodman My hearing had been gradually declining. I knew that because I would hear ringing in my ears, and I knew what that meant. (Scary organ chord here.) It meant hearing loss. But I figured I’m still hearing, still on the phone, still talking to people—I can manage, right? This had been going on for several years. But one day, I missed at least half of what was said in a meeting in our conference room between all the crosstalk, rapid speech, laughter, trucks and horns on the street, room echo, and millennial slang, some of which goes right over my head.
Now he was grown and I was the one who didn’t know what to expect. I put on the hearing aids and they were turned on. At first—nothing. Then the audiologist asked me a question and I jumped. It’s not that it was too loud, but the extra volume and clarity were a jolt. At first I wasn’t sure I liked it. But over the next few days, I loved it. I learned that the hearing aids cannot yet be absolutely perfect, although technology keeps improving, and everyone’s hearing needs are unique. I might still miss something at a lively meeting, but I’d miss 5 percent, not 50 percent. The benefits far outweigh any drawbacks.
I put on the hearing aids and they were turned on. At first— nothing. The audiologist asked me a question and I jumped. It’s not that it was too loud, but the extra volume and clarity were a jolt. At first I wasn’t sure I liked it. But over the next few days, I loved it. “And zen I uz mruwah blanken!” someone exclaimed and everyone howled. I sat there barely able to contribute. Afterward, two of my colleagues said to me. “You looked kind of out of it and sad during the meeting. Is everything okay?” “I’m fine,” I said. “It’s just that—” I stopped. I couldn’t say it. “I’m struggling… with my hearing.” There. I said it. It was out. They had had no idea. Hearing loss is invisible. I made an appointment with an audiologist, the same place where my son Rob goes. He was born with a hearing loss and was an old pro. I knew how to look at an audiogram, and I was mildly shocked when I saw mine. My hearing loss was worse than I had expected. Hearing aids were ordered. I had to go back in two weeks. I insisted that Rob come with me because I was scared. He rolled his eyes and assured me that I would be fine, but I still really wanted him to be there. So I used a sophisticated psychological technique to persuade him. This consisted of “Pleeeeease!!! We can get ice cream after.” (He was 30 at the time.)
The moral is: DON’T WAIT! Don’t let years go by where you miss out on much of your life. Make that appointment. It will be one of the best things you ever do for yourself and it will change your life for the better. It cannot be worse. If you’re nervous, take someone with you. If you live in New York City, ask Rob to come. Just take him to ice cream after.
Irene Goodman lives with her family in New York and Massachusetts. A top literary agent, she has since 2009 regularly auctioned off critiques of manuscripts to benefit Hearing Health Foundation and other nonprofits. HHF is grateful for her longtime support. For more, see irenegoodman.com/charity-critiques.
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EMERGING RESEARCH GRANTS
APPLY FOR AN EMERGING RESEARCH GRANT Hearing Health Foundation’s Emerging Research Grants (ERG) program provides seed money to researchers with innovative approaches to hearing and balance science. Grantees advance knowledge in the following under-researched areas, among others: » » » » »
Hearing loss in children Auditory processing disorder Hyperacusis Tinnitus Ménière’s disease
» » »
Usher syndrome Reducing cancer drug ototoxicity Links between hearing loss and diabetes, heart disease, and kidney disease
Within the scientific community, the ERG program is known as a competitive process that awards grants to only the most promising investigators. Recipients are exceptionally well positioned to win funding from the National Institutes of Health (NIH), leading to dramatic innovations in the field. In fact, ERG alumni have gone on to be awarded an average of $91 for every dollar of their ERG grant. While early career researchers are especially encouraged to apply, ERG awards are open to both early career researchers and senior investigators. The application period for the next ERG program opens in the fall.
For more information, please see hhf.org/erg.
2016 ERG researcher Elizabeth McCullagh, Ph.D., and colleague at the University of Colorado Denver (top); and a microscopic view of a mouse cochlea showing sensory hair cells in green.
living with hearing loss
hearing health foundati o n
Older Adults
My Cochlear Implant Adventure
and
Cochlear Implants
A hearing loss consumer advocate shares how she decided to get an implant at age 86, and what happened next. By Ruth D. Bernstein
Top: During mapping sessions, the cochlear implant computer program gets adjusted to Ruth Bernstein’s hearing ability. Above: Bernstein’s MED-EL implant processor is attached using magnets.
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I’ve been dealing with my deteriorating hearing for four decades. As the years went by and my hearing continued to get worse, my ever-patient audiologist encouraged me to consider a cochlear implant (CI). I was reluctant because I have a long history of hypersensitivity and allergic reactions to medications and anesthesia. My allergy to the plastic used in hearing aids also did not bode well for CI devices. Over a 20-year period, I was evaluated five times for CIs. Each time I came away feeling it wasn’t time yet. I was still able to have one-on-one conversations in quiet spaces, use the phone, and hear music, which was surprising given the fact my audiogram said I was technically deaf. Seven years ago, when I turned 80, I realized conversations were getting more difficult. I needed a Bluetooth streamer or captioning to use the phone. I felt physically exhausted by the huge amount of energy my brain was burning to keep me hearing. One day I suddenly lost my balance on the subway. To find out why, my general practitioner sent me to Lawrence Lustig, M.D., head of the department of otolaryngology–head and neck surgery at Columbia University. After many tests, Dr. Lustig concluded I had vertigo, for which there was no physical explanation. He suggested, and I agreed, I was a candidate for a CI because my ears were in good shape internally. I controlled the vertigo by using Sea-Band acupressure wristbands. Happily, it disappeared after three months. I was evaluated at Columbia, and the results were not surprising: I was almost deaf in both ears. I had finally found a surgeon who understood my physical needs and a CI audiologist who understood my auditory needs. It was time to move forward. Finding the right CI team is a very personal decision. I encourage anyone considering an implant to interview several teams to find the right fit. One size does not fit all. After talking with Dr. Lustig, my general practitioner agreed to the operation because I would be under anesthesia for less than two hours, something he was concerned about because of my age, then 86. First, we had to decide which ear should be implanted. Although my right ear has been my “worse” ear all my life, hearing with my left ear had recently become erratic. We chose the left ear for the CI in the hope it would become more reliable.
Trying Out Options
Now it was time to choose a device that wouldn’t cause an allergic reaction. That process took 18 months, as I went through a series of
living with hearing loss
I was evaluated at Columbia, and the results were not surprising: I was almost deaf in both ears. I had finally found a surgeon who understood my physical needs and a cochlear implant audiologist who understood my auditory needs. It was time to move forward. patch tests for the various CIs. Ultimately, we chose the MED-EL Synchrony implant and the Rondo 2 processor, which uses a magnet to attach to the back of my head, avoiding the plastic over-the-ear hook I’m allergic to. Surgery took place at Columbia in late August 2019. It started at 7:30 a.m. I had no dizziness or nausea afterward and was home eating lunch at 2 p.m. The three-week recovery period was uneventful. I was not totally cut off from the world because the hearing aid in my right ear was working—and I knew what to expect, thanks to my wide circle of friends with CIs, who shared their experiences, and the professionals who imparted their knowledge. I decided to forgo all extracurricular activities for the month of September, which allowed me time to heal and eliminated any possible stressful hearing situations. I found I had to nap every afternoon for three weeks. Dr. Lustig explained I needed to rest because it took my body time to eliminate the anesthesia in my system. I told family and friends to contact me by email or text; although I use InnoCaption for operator-transcribed phone calls, I asked for no phone calls, please! Otter.ai, the app that does instant AI transcription on smartphones, became an inseparable part of my life. A week after my implant, I went to a friend’s funeral. Sitting three rows back from the podium at the funeral parlor, I was able to read every word said on the Otter.ai transcription on my iPhone.
on wooden floors. The elevator in my building makes a clicking sound at every floor as it travels to the 22nd floor. That’s a lot of clicks I haven’t heard since I moved into the building in 1976! With the CI, my brain responds easily to the sounds it is hearing. I’m not physically exhausted at the end of every day because my brain no longer works in high gear all the time, something this 87-year-old great-grandmother really appreciates. In a story about preventing dementia in The New York Times in February 2020, Justin Golub, M.D., of Columbia Doctors says, “Better hearing is better for you and better for your mind…. Hearing is good for your brain, the more hearing you have the better.” My brain and I agree 100 percent!
Ruth D. Bernstein is a consumer advocate and a board member of the Hearing Loss Association of America’s New York City Chapter, hearinglossnyc.org. A version of this story originally appeared on the Center for Hearing and Communication website, chchearing.org. Lawrence Lustig, M.D., is a 2002 Emerging Research Grants alumnus. For references, see hhf.org/fall2020-references.
More Energy
The day after my CI was activated, I started meeting weekly with my speech-language pathologist at the Center for Hearing and Communication. We practiced sounds, words, and sentences I had difficulty understanding. She assigned online lessons on my iPad and helped me learn to use the assistive listening equipment that comes with my CI. At Columbia I also started monthly mapping sessions, the electronic process that adjusts the CI computer program in my implant. The range of sounds I can now hear is amazing. I can hear the timer on my iPhone ring from two rooms away, and now I know my slippers make a swishing sound
Share your story: Tell us your hearing loss journey at editor@hhf.org.
Support our research: hhf.org/donate
a publication of hearing health foundation
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living with hearing loss
hearing health foundati o n
Older Adults
An Unexpected Side Effect
and
Cochlear Implants
By Henry Klein
Reading lips and using a strong, body-worn hearing aid to help me detect the direction sounds were coming from got me by for years. Then, in my 70s, a cochlear implant in my right ear brought me back to the real world.
At age 30 in the spring of 1960, I was diagnosed with otosclerosis and underwent stapedectomy surgery for my left ear. Due to a sneeze a few days after, the pin flew off the mount and ruptured the inner ear. I was left with no hearing in the left ear. The right ear with a simple hearing aid was fine. I was told a hearing aid will always benefit me due to the very slow progression of otosclerosis. In the early 1980s at age 53, I underwent heart bypass surgery. The cardiologist said that my cholesterol must be controlled and prescribed neomycin, an antibiotic. I took this medicine for eight years. At first, I noticed difficulty hearing on the phone. Then difficulty hearing during regular conversations. The cardiologist declared that my hearing loss was not due to the neomycin, but another specialist told me neomycin was the cause and that it had gradually destroyed the nerves around the cochlea. Neomycin is ototoxic (harmful to hearing). The hearing loss in my right ear was profound. As a result of this experience, I strongly urge everyone to be fully aware of the side effects of any drug or supplement used. Check and check again—asking your prescriber but also doing your own research—and then check once more. Back then as the CEO of an electrical contracting firm, I needed to be able to communicate via telephone. I discovered the VCO (voice carry over) relay service, and got captioned phones for my office and home. Lipreading (speechreading) courses and a very strong, body-worn hearing aid to help me detect the direction sounds were coming from got me by for about 12 years. Then at age 73, 18 years ago, I had cochlear implant surgery for my right ear. The implant brought me back to the real world. During my time of profound, not yet treated deafness, my wife developed Alzheimer’s. The communication between us was challenging and tough. It was hard for her to understand that I needed to be facing her and read her lips. But we have found that persistence, determination, and love conquers all. I am now 91 years old. Wearing a face mask can be awkward. Sometimes I don’t recognize myself in the mirror. I recently heard this joke: A guy tried to rob a bank without wearing a face mask and the bank clerk said, “I’m not allowed to help you because you aren’t using a mask!” Humor, empathy, and resilience will get us through.
Henry Klein lives in Maryland.
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living with hearing loss
hearing health foundati o n
Moving on From Ménière’s
Older Adults and
Cochlear Implants
The hearing and balance condition Ménière’s disease brings changes at home, work, and play. By Alice Sheinman
Alice Sheinman and her dog Harry, who has helped her cope with Ménière’s disease.
About eight years ago when I was 46, a few days after having a very stressful cataract surgery, I started to trip over my own feet. My balance has never been very good, but this was out of the ordinary, even for me. I had to ask my husband to come home from work to take care of our 8-year-old son. After the attack passed, I noticed that I wasn’t hearing very well out of my right ear. I went to the doctor, who thought it was a sinus infection and gave me an antibiotic. More vertigo attacks followed, and eventually I was diagnosed with Ménière’s disease. I found an ENT who specializes in this chronic vestibular disorder that affects balance and hearing. I was put on a diuretic to help with fluid retention and underwent endolymphatic shunt surgery, where a tube was permanently put behind my right ear to drain excess fluid. The vertigo attacks finally stopped, but I started having tinnitus and vestibular migraines. To stop the headaches, I tried different medications that made me tired, gave me brain fog, and caused my hair to fall out. I told my doctor, “I pay too much for these highlights to see them on the bottom of the bathtub!” I decided to stop all of them and just take the diuretic, so at least I still have my hair. Then more recently, a couple years ago, the Ménière’s started affecting both ears. It caused a fluctuating hearing loss, so I was never sure from day to day if I would be able to hear or not. This was devastating. I am already legally blind, with only about 25 percent vision in my right eye. Hearing had always been how I navigated the world. I didn’t want to live as a person with no hearing and low vision. I became very depressed. I am a musician, and play the alto saxophone in a local community orchestra. I’ve been playing the instrument since I was 12 years old and wondered if I could continue. I had another endolymphatic shunt surgery, this time in my left ear. Afterward I was home feeling sorry for myself. My sister called and said she was getting a puppy to be her dog’s playmate, and there were other puppies available—did I want one? After years of telling our son we couldn’t get a dog because of the responsibility involved, this time I said yes, and we brought Harry home two months later. Harry has really helped me to cope. He is always there for a cuddle when I need it. I’ve also seen a psychotherapist, who has helped me cope with the depression and anxiety from having Ménière’s and the challenge of making my family and friends understand what it’s like to have it.
Making Changes
In the beginning of 2018, my ENT suggested a cochlear implant (CI) for my right ear. He explained that I would need a “backup” for when the hearing in my left ear went. After surgery and activation, I was lucky that I was able to understand words immediately. During this time, I kept teaching cooking class to special needs high school students. The students were very kind to me, perhaps because they had their own disabilities to deal with. Every morning I would tell them if it was a bad or good hearing day, and they were very accommodating. 30
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living with hearing loss
I still play alto saxophone in a local orchestra. After getting my first cochlear implant, I could see that rehearsal was much harder than I thought it would be. I told the conductor that as much as I had enjoyed coming, I felt like I might be a liability. He asked me if playing in the orchestra would help my rehabilitation with the implant. I said yes, that I thought it would. He said that I was staying. I was so happy, I started crying. This group has shown me such kindness.
I used a Roger Select microphone placed on the kitchen worktable. On a bad hearing day, the students would pick it up to talk into it, so I could hear them. What I never told them was that the mic allowed me to hear them from across the room. This made for some very entertaining times! But as much as I loved my work and students, my inability to hear was becoming more of a problem for me. I taught in a commercial kitchen where exhaust fans, ovens, and other kitchen equipment were constantly running—not an ideal listening environment. Although my boss was very understanding, I started to think about another career that fit with my abilities and realized that perhaps the best job for me would be to help people just like me. I looked into the field of vocational rehabilitation. I saw I could work with people one on one or in small groups and use skills that I developed while teaching and at previous jobs in management and administration. Who better to work with people with disabilities than someone who is disabled and can empathize with them? In fall 2019, I started my master’s in rehabilitation counseling at Rutgers University in New Jersey. The online format fits with my hearing ability. I still play alto saxophone in a local orchestra. After getting my first CI, I could see that rehearsal was much harder than I thought it would be. I told the conductor that as much as I had enjoyed coming, I felt like I might be a liability. He asked me if playing in the orchestra would help my rehabilitation with the implant. I said yes, that I thought it would. He said that I was staying. I was so happy, I started crying. This group has shown me such kindness. When the hearing in my left ear diminished, my ENT recommended a second CI. I got the surgery and, in February 2020 before the pandemic lockdown, the implant was activated. My mapping appointments for March and April were canceled, but even without the mapping the left ear came along. I graduated from hearing Charlie Brown’s teacher to hearing Alvin and the Chipmunks. I continued with school, finishing my second semester and the summer session. I am glad to be in school as it’s given me a purpose during this unsettled time, and I am hopeful that when our orchestra is able to again meet in person, the two implants will help me hear the music better. Life has taken me on a path that I never expected to be on. I’ve realized that we need to live our own life as best we can, trying to focus not on what a disease has taken away from you but on what you can still do.
Share your story: Tell us your hearing loss journey at editor@hhf.org.
Support our research: hhf.org/donate
Alice Sheinman lives with her family in New Jersey. a publication of hearing health foundation
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research
Hearing Restoration Project Plans Announced for 2020–21
By Peter G. Barr-Gillespie, Ph.D.
Hearing loss occurs when sensory hair cells of the inner ear (cochlea) are damaged or die. The goal of the Hearing Restoration Project (HRP) is to develop therapeutic methods to convert the cells that remain after damage into new, completely functional sensory hair cells, restoring hearing. We know that in most species—but not mammals, like humans and mice—hair cells robustly regenerate on their own after damage to the auditory system. The HRP is tasked with uncovering how to replicate this regeneration process in humans. Here are the funded HRP projects for the coming year. Thank you for your ongoing support.
Integrative Systems Biology of Hearing Restoration
Seth Ament, Ph.D. University of Maryland School of Medicine
year 3 | The broad premise of the HRP is to identify molecules that could control hair cell regeneration. To do this, we are studying cell types and regenerative processes in multiple contexts and species, then integrating these data together to identify mechanisms that could potentially be turned on in the mouse cochlea to drive transdifferentiation (activating the correct set of hair cell–promoting genes in supporting cells). The role of this systems biology project is to provide the necessary data integration “glue,” binding together the results from the data generation projects. We will combine much of the data that is being generated by the HRP to advance our knowledge of hair cells, supporting cells, conversion of one cell type to another, and the potential for regeneration. Through modeling all of the available HRP data, we will identify regulatory molecules that may contribute to regeneration.
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Comparison of Three Reprogramming Cocktails in the Organ of Corti: Cells, Transcriptomes, and Epigenomes
Detection of Transcriptome Changes in Single Cells After AminoglycosideInduced Hair Cell Loss in the Chicken Basilar Papilla
year 3 | Each cell type in the human body is defined by its activation of a unique combination of genes that endow each cell type with unique properties. The activation of these genes is achieved by special proteins known as transcription factors, or switches, responsible for switching on appropriate genes in one cell type and preventing inappropriate genes from being activated. In recent years, investigators have identified a number of these transcription factors that cause the formation of hair cells. The goal this year is to examine why these cocktails of transcription factors are able to reprogram nonsensory cells, but not supporting cells of the inner ear, to become hair cells.
year 4 | Birds robustly regenerate their cochlear hair cells through the conversion of dormant supporting cells into new hair cells. Our project uses selective, high-sensitivity methods to reveal the molecular changes in supporting cells after their activation by, for example, ototoxic drugs that cause hair cell death. By examining the responses of many single cells, we have begun to identify triggers that initiate, execute, sustain, and ultimately terminate the regenerative process. Recent experiments have confirmed that the two halves of the chicken cochlea (neural and abneural) predominantly use different regeneration mechanisms. Using bioinformatics methods to process the resulting data, we will analyze chicken cochlea cell populations isolated at various time points during hair cell regeneration and specifically characterizing the two distinct responses. By examining regeneration in an animal that replaces hair cells after damage, we will be able to find triggers that may be activated in mammals to reverse hair cell loss.
Andy Groves, Ph.D. Baylor College of Medicine
Stefan Heller, Ph.D. Stanford University
research
Epigenetics Analysis of Maturation and Regenerative Responses in the Mouse Organ of Corti and Utricle
Neil Segil, Ph.D. University of Southern California
photo credits jane g photography
Andy Groves, Ph.D. Baylor College of Medicine
year 4 | Although hair cell regeneration does not occur in mammals, newborn mice harbor a latent capacity for some regenerative responses. However, this capability disappears within the first few weeks of life. This observation provides an experimental window that this proposal exploits to address fundamental questions about the failure of hair cell regeneration in mammals. Specifically, we propose experiments to identify those changes in the genetic material, the chromatin, that are responsible for orchestrating the differentiation of new hair cells within the newborn organ of Corti in the inner ear, and to investigate the changes in the chromatin that lead to the failure of regeneration in the adult mammalian inner ear.
Support our research: hhf.org/donate
Implementing the gEAR for Data Sharing Within the HRP
Ronna Hertzano, M.D., Ph.D. University of Maryland School of Medicine
year 4 | One of the successes of the HRP has been the development of the gEAR portal (gene Expression Analysis Resource, umgear. org). The gEAR has many public and private datasets, and these complex datasets can be compared by scientists without the need for sophisticated programming expertise. The gEAR is also the primary data sharing, visualization, and analysis tool for auditory researchers outside of the HRP, becoming a platform that supports the hearing research community at large. This year we will build on past successes, continuing to support data upload, develop new visualization tools, and further enable the greater research community to exploit this resource.
Mouse Model Systems to Interrogate Candidate Genes for Sensory Hair Cell Regeneration
John Brigande, Ph.D. Oregon Health & Science University year 6 | As HRP scientists detect and characterize genes that are hypothesized to participate in the activation or inhibition of hair cell regeneration, methods for altering or disrupting those genes are critical to the demonstration of their importance. This project aims to couple together two sophisticated methods for manipulating genes in mice, the so-called CRISPR-READI and i-GONAD methods. CRISPRREADI enables efficient, large gene edits, and i-GONAD simplifies the delivery of reagents for gene editing. Together, the proposed CRISPRREADI-GO method should allow for rapid and efficient gene editing to be put to use by HRP investigators.
HRP scientific director Peter G. Barr-Gillespie, Ph.D., is a professor of otolaryngology and the chief research officer and executive vice president at Oregon Health & Science University. For more, see hhf.org/hrp.
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EMERGING RESEARCH GRANTS
2020 Emerging Research Grants Announced
By Christopher Geissler, Ph.D.
Scientific researchers have, like all of us, faced numerous challenges this year due to the COVID-19 crisis but have continued the science throughout, whether at home or in labs with reduced occupancy, driven by a dedication to advance knowledge and contribute to the treatment of hearing loss and other hearing and balance disorders. We are deeply grateful that donors to Hearing Health Foundation (HHF) have shown a similar dedication. Following a rigorous review process, our Scientific Review Committee and Council of Scientific Trustees, comprising senior expert scientists and physicians from across the U.S., have chosen seven especially meritorious Emerging Research Grants (ERG) projects to fund for the upcoming year (October 1, 2020 to September 30, 2021). Starting with this 2020–2021 ERG cycle, HHF is increasing the available annual amount per project from $30,000 to $50,000. The additional funds will have a profound impact on the scope and ambition of the projects being undertaken, and the increase in funding and the decision to make grants renewable for a second year attracted an exceptionally high-quality pool of applicants, with application numbers increasing 67 percent over 2019. We are pleased to be able to support the work of these promising researchers and look forward to learning about the advances they will undoubtedly make in the coming year and beyond. Congratulations to this year’s ERG recipients:
James Dewey, Ph.D. University of Southern California Project: Filtering of otoacoustic emissions: a window onto cochlear frequency tuning Mishaela DiNino, Ph.D. Carnegie Mellon University Project: Neural mechanisms of speech sound encoding in older adults Generously funded by the Meringoff Family Foundation Z. Ellen Peng, Ph.D. University of Wisconsin-Madison Project: Investigating cortical processing during comprehension of reverberant speech in adolescents and young adults with cochlear implants Generously funded by the General Grand Chapter Royal Arch Masons International Pei-Ciao Tang, Ph.D. Indiana University Project: Elucidating the development of the otic lineage using stem cell–derived organoid systems
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Bryan Ward, M.D. Johns Hopkins University Project: The effect of fluid volume on vestibular function and adaptation in patients with Ménière’s disease Ross Williamson, Ph.D. University of Pittsburgh Project: Characterizing tinnitus-induced changes in auditory corticofugal networks Calvin Wu, Ph.D. University of Michigan Project: Development and transmission of the tinnitus neural code Generously funded by the Les Paul Foundation
Christopher Geissler, Ph.D., is HHF’s director of program and research support. The Winter 2021 issue of Hearing Health, coming out in January, will have additional details about these projects. For more, see hhf.org/erg.
research
Recent Research by Hearing Health Foundation Scientists, Explained Steps Toward the Better Understanding of Hearing Loss The cellular diversity of the inner ear has presented a technical challenge in obtaining molecular insight into its development and function. The application of technological advancements in cell type–specific expression enables clinicians and researchers to leap forward from classic genetics to obtaining mechanistic understanding of congenital and acquired hearing loss. This understanding is essential for development of therapeutics to prevent and reverse diseases of the inner ear, including hearing loss. For our paper in The Laryngoscope in June 2020, we compared and contrasted major approaches for cell type– specific analysis of the ear—fluorescence–activated cell sorting (FACS), ribosomal and RNA pulldown techniques, and single cell RNA–seq (scRNA–seq)—using published and original data. After demonstrating the strengths and weaknesses of these approaches, we conclude that to maximize the utility of these approaches, it is important to match the experimental approach with the tissue of origin, cell type of interest, and the biological question. Often, a combined approach is required. Finally, there are new tools for the visualization and analysis of complex expression data. Our gEAR platform collates cell type–specific gene expression from the ear field and provides unprecedented access to both clinicians and researchers to gene expression data. In a second study in the journal Otolaryngologic Clinics of North America in August 2020, my team and I investigate noise and its role as acoustic trauma to the inner ear. While not funded by Hearing Health Foundation (HHF), our review of hearing loss and tinnitus has broader implications for HHF’s Hearing Restoration Project (HRP). In the report, we detail the many types of hearing loss, the broad categories being conductive hearing loss; sensorineural hearing loss (itself divided into temporary, hidden, and permanent); and hearing loss of central origin. All indications are that tinnitus, when not caused directly by a central nervous system issue (such as stroke), is always associated with one or more forms of hearing loss. This strong comorbidity indicates that it is unlikely there will be a cure for tinnitus independent of a cure for hearing loss. It also points to tinnitus potentially
We find it is unlikely there will be a cure for tinnitus independent of a cure for hearing loss. being an early symptom of an underlying auditory injury before measurable audiometric changes. That said, the relationship between the characteristics of the hearing loss and the perception of tinnitus does not follow any clear rules. In a third paper in Development in September 2020, our team determined the role a critical protein, GFI1, plays in the development of hair cells. GFI1 may dictate whether an embryonic hair cell matures into a functional adult hair cell or becomes a cell that functions more like a nerve cell (neuron). The research builds on research from my dissertation, when I discovered that the hearing loss from mutations in the protein POU4F3 appeared to largely result from a loss of GFI1 in hair cells. The new data explains the importance of GFI1 in experimental protocols to regenerate hair cells from stem cells. In the future these regenerative methods, which are being pioneered by numerous groups in the field, will have the potential to be used for patients who have experienced hearing loss. While not yet ready for prime time, the cumulative work of the field and work funded by HHF through the HRP brings hope for a brighter future. —Ronna Hertzano, M.D., Ph.D.
A 2009–10 ERG scientist and a member of HHF’s Hearing Restoration Project, Ronna Hertzano, M.D., Ph.D., is an associate professor in the department of otolaryngology–head & neck surgery at the University of Maryland School of Medicine. For more, see umgear.org.
Support our research: hhf.org/donate a publication of hearing health foundation
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EMERGING RESEARCH GRANTS
Investigating the Interaction of Auditory and Pain Pathways As the intensity of a sound increases, typical-hearing listeners experience an increase in loudness, but for levels above 120 decibels (dB), listeners not only perceive the sound as extremely loud, but also painful—the aural threshold of pain. Some individuals with hearing loss and other neurological disorders perceive even moderateintensity sounds as both painful and loud, a condition known as pain hyperacusis. At the same time, in many individuals moderateintensity sounds have been shown to reduce sensitivity to pain, a phenomenon termed audio-analgesia. This has led to the use of white noise and music in some medical settings. And it has long been known that very intense sounds around 130 dB can evoke aural pain, termed audio-hyperalgesia, but it is not clear whether pain sensitivity is also exacerbated.
We tested the hypothesis that hearing loss could alter pain sensitivity by exposing rats to an intense noise leading to hearing loss. Three and four weeks after the noise exposure, pain sensitivity significantly increased. To our knowledge, these results show for the first time that noiseinduced hearing loss can lead to increased thermal pain sensitivity. To investigate the multisensory interactions between auditory and pain pathways, we performed a series of experiments using a rat model, with results published in Hearing Research in August 2020. After confirming that sounds up to 90 dB reduced pain sensitivity (specifically 36
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thermal, or pain from heat), a major new finding was that high intensity sounds exacerbated the experience of thermal pain. Our results show for the first time that audioanalgesia in rats is limited to intensities below 100 dB, that thermal pain sensitivity begins to increase above 110 dB, and that audio-hyperalgesia emerges for intensities near the aural thresholds of pain. We also modified the opioid pain pathway by treating rats with a high dose of the opioid fentanyl, known to induce increased pain sensitivity after its effects diminish. In ambient noise, pain sensitivity remained typical 10 days after the fentanyl dose. But at 90 to 110 dB, pain sensitivity increased, indicating that the pre-treatment with fentanyl had converted audio-analgesia to audio-hyperalgesia. Finally, we tested the hypothesis that hearing loss could alter pain sensitivity by exposing rats to an intense noise leading to hearing loss. Three and four weeks after the noise exposure, pain sensitivity significantly increased. To our knowledge, these results show for the first time that noise-induced hearing loss can lead to increased thermal pain sensitivity. Taken together, our results suggest that auditory and pain pathways interact in ways that depend on intensity, hearing loss, and opioid pain signaling, data that may be relevant to better understanding pain hyperacusis. —Senthilvelan Manohar, Ph.D.
A 2017 ERG scientist generously funded by Hyperacusis Research Ltd., Senthilvelan Manohar is a research assistant professor at the University at Buffalo, the State University of New York. Coauthors on this paper include ERG alumni Kelly Radziwon, Ph.D., and Richard Salvi, Ph.D. Radziwon’s 2015 and 2018 ERG awards were also funded by Hyperacusis Research Ltd.
research
Traumatic Brain Injury Affects Auditory Quality of Life Even With Typical Hearing Thresholds Traumatic brain injury (TBI) is a major cause of morbidity and mortality in the United States and worldwide. There are an estimated 3.2 to 5.3 million individuals in the United States who are living with a TBI-related disability, and the estimated societal cost is in excess of $76 billion per year. Auditory conditions, including hearing loss, tinnitus, and hyperacusis, have been recognized as a common consequence of TBI, even in the absence of a temporal bone fracture. As published in the journal Otolaryngology–Head & Neck Surgery in June 2020, we evaluated adult patients with typical hearing thresholds and a history of TBI for subjective hearing loss, tinnitus (ringing in the ears without a sound source), a feeling of ear fullness, hyperacusis (sensitivity to sounds), and autophony (unusually loud hearing of one’s own voice). We also administered questionnaires specific to certain hearing conditions: the Hearing Handicap Inventory for Adults, the Tinnitus Handicap Inventory, and the Hyperacusis Questionnaire.
Participants with TBI not only commonly reported a range of auditory conditions, but also almost half the participants sustained head injury six years before participation in this study, suggesting the chronic burden of these symptoms.
Our study was among the first to investigate audiometric patterns, auditory conditions, and associated handicap in individuals following TBI with pure tone averages in the typical range. Participants with TBI not only commonly reported a range of auditory conditions, but also almost half the participants sustained head injury six years before participation in this study, suggesting the chronic burden of these symptoms. We concluded that despite typical hearing thresholds, individuals with TBI experience a decrease in auditory quality-of-life metrics. —David Jung, M.D., Ph.D., and Elliot Kozin, M.D.
A 2018 ERG scientist, David Jung, M.D., Ph.D. (above left), is an assistant professor of otolaryngology–head and neck surgery, Harvard Medical School/Massachusetts Eye and Ear. A 2018 ERG scientist generously funded by the General Grand Chapter Royal Arch Masons International, Elliot Kozin, M.D. (above right), is an otolaryngologist at Massachusetts Eye and Ear.
Support our research: hhf.org/donate
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EMERGING RESEARCH GRANTS
A Multidisciplinary Approach to Overcome Pediatric Listening Difficulties Listening difficulties occur in children diagnosed with auditory processing disorders (also known as central auditory processing disorders) and may co-occur in children who have developmental language disorder or attention/memory deficits. Persistent listening difficulties negatively affect children’s learning and functioning. For our paper published in the journal Attention, Perception, & Psychophysics in June 2020, we examined children’s susceptibility to auditory distraction and its relation to working memory capacity in 125 school-age children ages 7 to 11 years old with typical hearing and nonverbal IQ scores.
Importantly, functional difficulties in children with listening difficulties as reported by parents were more significant relative to children’s formal test results. This indicated that commonly used assessments may not fully capture the children’s listening challenges. We found that the children’s susceptibility to background auditory distraction did not diminish with age. We also did not find a significant association between this susceptibility and children’s working memory capacity. Since children’s working memory improvements with age do not appear to help them ignore sound distractions, it is crucial to enhance target speech in children’s learning environments. In another study published in the American Journal of Audiology in August 2020, we compared 26 typicalhearing school-age children reported to have listening difficulties with 26 age-matched children with no listening difficulties or parent concerns, on multiple auditory, language, memory, and attention measures. Novel to 38
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our approach was using multiple tasks for working memory, measuring different aspects of language ability, and measuring the accuracy and speed of retrieving information from long-term memory/stored knowledge. We found that children with listening difficulties needed a greater signal-to-noise ratio than children with no listening difficulties. Grammatical knowledge, nonverbal IQ, and general attention did not significantly differ between the groups. Overall group scores of children with listening difficulties were not low enough to be classified as clinically poor. This is consistent with evidence that many children assessed for auditory processing problems do not fulfill diagnostic criteria even though they present with comorbid learning problems. Importantly, functional difficulties in children with listening difficulties as reported by parents were more significant relative to children’s formal test results. This indicated that commonly used assessments may not fully capture the children’s listening challenges. Evidence from our studies sheds light on some sensitive areas for assessment and intervention. Our most recent data (in a paper under review) show that larger word knowledge, stronger vocabulary networks, and accurate and efficient retrieval of stored knowledge from long-term memory help children perform significantly better while listening in complex auditory situations. Assistive listening devices, contextualized robust language-based intervention, and educational supports are important, and can be best achieved when a child’s difficulties are discussed using a framework of multiple sources of potential deficits instead of a single, disciplinespecific, diagnostic label. This multidisciplinary approach can help avoid confusion that parents face regarding appropriate management. —Beula Magimairaj, Ph.D., CCC-SLP
A 2015 ERG scientist generously funded by the General Grand Chapter Royal Arch Masons International, Beula Magimairaj, Ph.D., CCC-SLP, is a research scientist at Utah State University.
research
Effects of Premature Birth on the Auditory System Nearly 380,000 preterm births or deliveries prior to 37 weeks are recorded annually in the United States. It is also estimated that 15 million preterm births occur globally each year. Recent reports indicate the prevalence of preterm births continues to rise, impacting as many as 1 in 10 infants. According to information acquired from 2015 to 2017, premature birth rates are 49 to 50 percent higher in African American women (14 percent) when compared with Caucasian women (9 percent), indicating the presence of a health disparity issue. The probability of substantial health issues and longterm disabilities increases as gestation at the time of birth decreases. If the effects of prematurity on children’s development of auditory skills are better understood, hearing healthcare professionals will be able to provide more individualized intervention recommendations and improve long-term outcomes for children born prematurely. In our August 2020 paper in The Hearing Journal, we review causes of prematurity and the typical development of the auditory system. The sensory system, which includes the auditory system, develops in a very specific way inside the womb. This process is interrupted and occurs differently when development continues outside of the womb due to a premature birth. Specifically, exposure to frequencies of sounds, noise, and noise levels is very different within the neonatal intensive care unit. Information on this topic is critical for audiologists to know because this early sensory interruption can affect the brain’s ability to process sound. This can have long lasting consequences for those children born prematurely and can include central auditory processing disorders for this special population. We examined central auditory processing skills in adolescents ages 12 to 15 years with a premature birth history. Those skills were then compared with their age-matched peers who have a full-term birth history. The central auditory processing skills accessed in that project included binaural integration (combining information coming from both ears); binaural separation (listening to one message, while ignoring a competing message); binaural interaction (detecting where sounds are coming from); rapid speech (speech that is fast and distorted); temporal patterning (distinguishing sound patterns); temporal resolution (separating gaps or sounds
Major findings from our study are that adolescents who were born prematurely had significant difficulties with central auditory processing skills in the areas of binaural integration and speech-in-noise. from each other); speech-in-noise (understanding speech in the presence of background noise); and auditory memory (repeating what is heard). Major findings from our study are that adolescents who were born prematurely had significant difficulties with central auditory processing skills in the areas of binaural integration and speech-in-noise. Our research is ongoing and being assessed in other pediatric age groups. A major recommendation of this paper is early monitoring of central auditory processing skills by audiologists for this population of prematurely born children. —Alisha Lambeth Jones, Au.D., Ph.D.
A 2018 ERG scientist generously funded by the General Grand Chapter Royal Arch Masons International, Alisha Lambeth Jones, Au.D., Ph.D., is an associate professor in the department of communication disorders at Auburn University in Alabama.
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a publication of hearing health foundation
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Association Between Blood Pressure and Cochlear Function Contrary to our hypothesis, we found that subtle BP elevation was not associated with poorer hearing or cochlear dysfunction. A greater elevation in BP (that is, hypertension itself) may be associated with more pronounced effects on inner ear function, warranting further investigation.
For references, see hhf.org/fall2020-references.
High blood pressure (BP) is a common chronic condition in the United States with an estimated prevalence among adults of 31 percent, or 69 million. In addition to an increased risk of stroke and heart disease, elevated BP may also increase risk of hearing loss. In fact, the two commonly co-occur. Numerous studies have evaluated the association between hearing loss and risk factors for cardiovascular disease, including high BP. However, data from population- and laboratory-based studies remains inconclusive, and most prior work has focused on the effects of BP level on behavioral responses to sounds. Our study published in Ear and Hearing in August 2020 extended previous work by examining the effect of BP on auditory status using extended highfrequency audiometry (which measures behavioral responses to sound) and distortion product otoacoustic emissions (DPOAEs), a noninvasive, objective test of inner ear (cochlear) function. Sixty individuals took part in this study and underwent a health assessment in addition to comprehensive audiological testing. Participants were placed into one of two groups according to their BP level: “optimal” (systolic/diastolic BP <120/<80mm Hg) or “nonoptimal” (systolic ≥120 or diastolic ≥80mm Hg, or requiring the use of antihypertensives). Initial findings suggest significant correlations between diastolic BP and behavioral hearing thresholds. We also identified a correlation between diastolic BP and DPOAE levels in the mid-frequency range. However, more in-depth statistical analysis indicated that other factors such as age and gender are more important drivers of impaired auditory function than BP level. Contrary to our hypothesis, we found that subtle BP elevation was not associated with poorer hearing or cochlear dysfunction. A greater elevation in BP (that is, hypertension itself) may be associated with more pronounced effects on inner ear function, warranting further investigation. In addition, our study suggests that DPOAEs may be a viable tool to characterize the relationship between risk factors for heart disease (and in particular, stage 2 hypertension) and hearing health. Follow-up investigations are underway. —Rachael R. Baiduc, Ph.D.
A 2018 ERG scientist, Rachael R. Baiduc, Ph.D., is an assistant professor in the department of speech, language, and hearing sciences at the University of Colorado Boulder, where she is also the director of the Hearing Epidemiology and Research Diagnostics (HEARD) Laboratory.
Support our research: hhf.org/donate 40
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meet the researcher
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Meet the Researcher
Emerging Research Grants (ERG) As one of the leading funding sources available for innovative research, HHF’s ERG program is critical. Without our support, scientists would not have the needed resources for cutting-edge approaches toward understanding, preventing, and treating hearing and balance disorders.
Mishaela DiNino, Ph.D. Carnegie Mellon University
DiNino received her doctorate in neuroscience from the University of Washington. She is currently a postdoctoral fellow in the department of psychology at Carnegie Mellon University. DiNino’s 2020 Emerging Research Grant was generously funded by the Meringoff Family Foundation.
In Her Words as a neuroscientist, I am fascinated by how the structural and functional changes that happen in the brain throughout our lives influence how we perceive the world. Talking with older adults about their listening experiences, as well as with researchers investigating aging, turned on a lightbulb for me: Certain age-related changes in the auditory brain, not just those in the ear, may also influence hearing abilities. when i was a child, I wanted to be an oceanographer. I even hung pictures of fish with their scientific names on the wall in my room! I have always been interested in “exploring the unknown.” A psychology class in high school made me realize that I did not have to go all the way to the bottom of the ocean to find “unknowns”—there were plenty of them right inside the human brain. i actually knew very little about hearing loss, or even the auditory system, until I started my dissertation research with individuals with cochlear implants. I knew that hearing loss presented challenges, but I previously had little sense of just how difficult many everyday activities are for people with hearing impairments. I began shadowing audiologists in the clinic to learn more about their patients’ personal experiences, which helped inspire my current project investigating speech perception in individuals with hearing impairments. my colleagues are always surprised to learn that I spend much of my free time at heavy metal concerts—with earplugs, of course! I know firsthand that many concertgoers feel that wearing hearing protection diminishes 42
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sound quality and hinders the experience. But, many of them do not know that even one loud music event can permanently damage their hearing. I have done a lot of community outreach to educate teenagers and adults about the effects of loud music on the auditory system. i have a chiweenie (chihuahua/dachshund mix) that I like to take on adventures such as hiking or exploring a nearby town. Stepping away from an issue with a research project and seeing my dog get so excited about something as simple as a flower she has never smelled before really helps me put things in perspective. My husband and I are also currently expecting our first child, which I am sure will change our lives in many exciting ways.
Mishaela DiNino, Ph.D., is funded by the Meringoff Family Foundation, a New York City–based organization whose mission is to improve the lives of local children through support of education, research, and public health.
We need your help funding the exciting work of hearing and balance scientists. Please consider donating today to Hearing Health Foundation to support groundbreaking research. Visit hhf.org/how-to-help.
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HamiltonCapTel.com/HHM1020 082520 FEDERAL LAW PROHIBITS ANYONE BUT REGISTERED USERS WITH HEARING LOSS FROM USING INTERNET PROTOCOL (IP) CAPTIONED TELEPHONES WITH THE CAPTIONS TURNED ON. IP Captioned Telephone Service may use a live operator. The operator generates captions of what the other party to the call says. These captions are then sent to your phone. There is a cost for each minute of captions generated, paid from a federally administered fund. To learn more, visit fcc.gov. Voice and data plans may be required when using Hamilton CapTel on a smartphone or tablet. Hamilton CapTel may be used to make 911 calls, but may not function the same as traditional 911 services. For more information about the benefits and limitations of Hamilton CapTel and Emergency 911 calling, visit HamiltonCapTel.com/911. Courtesy of Cisco Systems, Inc. Unauthorized use not permitted. Third-party trademarks mentioned are the property of their respective owners. Third-party charges may apply: the Hamilton CapTel phone requires telephone service and high-speed Internet access. Wi-Fi capable. Copyright © 2020 Hamilton Relay. Hamilton is a registered trademark of Nedelco, Inc. d/b/a/ Hamilton Telecommunications. CapTel is a registered trademark of Ultratec, Inc.
