Coping With Every Musician’s Nightmare: Hearing Loss

photo of Richard Einhornby LOU FANCHER , September 30, 2016 in “San Francisco Classical Voice”

Waking up to find that he was suddenly and entirely deaf in his right ear on June 15, 2010, composer Richard Einhorn’s biggest worry wasn’t that he’d never work again. Nor was his greatest concern the spinning room and nausea, the way human voices sounded like screeching devils riding on crazed, squealing robots, or the piercing tinnitus, buzzing like a high-pitched, enraged refrigerator in his ear. Einhorn knew that he had only 30 percent hearing in his left ear, but didn’t know enough to worry about permanent damage to his other, “good ear.” He attributed the problem to allergies.

Einhorn wasn’t the only person in the world unfamiliar with the term, “Idiopathic Sudden Sensorineural Hearing Loss,” a medical emergency that occurs when the vestibulocochlear nerve goes wacky and basically, without immediate treatment with steroids, a person abruptly loses hearing forever.

Eventually, learning the cause was not allergies or earwax, as emergency room doctors in the hospital to which he fled first supposed, the then 57-year-old composer’s most monstrous fear was of becoming isolated. Married, with a daughter, accustomed to an interactive social life, Einhorn thought more like an average human being than like a musician. What would dinnertime be like? How would he converse and hear at parties and concerts? Would he be miserably lonely?

“It was easily the worst night of my life,” says Einhorn, in an interview from his home in New York City. “It was devastating on a personal level. It took me well over two years before I could physically and psychologically manage it.” [Full article]

How to Enjoy Music After a Hearing Loss

Stu Nunneryfrom HearingLikeMe.com, by Stu Nunnery on December 27, 2016:

Does hearing loss affect how we enjoy music? If so, is it possible to regain our enjoyment of music even after hearing loss?

Many of us with hearing loss have stopped listening to music because it does not sound how we remember it. Nevertheless,  more musicians, singers and music lovers with hearing loss are coping and finding their way back to music.

Recently I attended a seminar about the impact of hearing loss and hearing aids on music enjoyment that was hosted and led by Geoff Plant, a hearing rehabilitation specialist, musician and mentor of mine. The seminar explored the challenges of experiencing music after hearing loss, the claim that hearing aids do not always provide a quality musical experience, and strategies being used to more fully enjoy music.

Here’s what I learned…  [Full article]

Convention 2016: Salt Lake City, Utah

A Research Symposium, Breakout Sessions, Awards – and the most fun anyone ever had on a scavenger hunt!

Next up on the Museum of Fine Arts Boston FM-Accessible Tour Schedule–Americas: Making Modern

Americas: Making Modern assorted paintings
Above, clockwise from top: ~ Jackson Pollock, Number 10, 1949, 1949. Alkyd (synthetic paint) and oil on canvas mounted on panel.  ~ Georgia O’Keeffe, Deer’s Skull with Pedernal, 1936. Oil on canvas. Gift of the William H. Lane Foundation.  ~ Frida Kahlo, Dos Mujeres (Salvadora y Herminia), 1928. Oil on canvas.

Americas: Making Modern

Museum of Fine Arts

Sunday, February 5   – 10:30 AM

Registration begins on January 9  and closes on January 27

A five-gallery exhibition on the third floor of the MFA’s Art of the Americas Wing explores what it meant to be in the vanguard of Modern art in the 20th century. From Frida Kahlo to Jackson Pollock, original voices of Modern artists working in the Americas were influenced by a variety of contemporaries, teachers, rivals, and friends. Incorporating diverse sources of inspiration, 20th-century painters took their artistic practice in dramatic new directions. Each gallery represents a moment—from Mexico City to New York to Boston—illustrating the evolution of Modern art in North America. Featuring new acquisitions, rarely seen loans, and masterpieces from the MFA’s collection, the installations provide fresh perspectives on Modern artists working in the 20th century.

How to Pre-Register for MFA Accessible Guided Tours

Attendance is limited and pre-registration is required by the dates listed for each program.  To pre-register or for more information, email  lwarren@mfa.org or  phone 617-369-3302.  

When you register, please indicate (in the subject line if you are emailing) the name of the tour and if you would like a neckloop or headset for the tour.

Registered participants will receive a confirmation prior to the date of the tour with entrance and cancellation information.  

Because the Gallery Tour Listening System equipment is reserved for hearing loss support group participants, the equipment is not available to other MFA Boston visitors for drop-in tours.  For that reason, guests of this program are requested to be aware of the the following policies:

  • Participants who register for accessible tours but cannot attend should note the cancellation policy on the confirmation to ensure that listening equipment is available to other visitors.  
  • Late registrations  cannot be accepted.  
  • Those who have not pre-registered may only join a tour on a standby basis and will be turned away if registration is full.  

Tours will begin promptly at start time.  Attendees should arrive 15 minutes prior to start time.  

Questions?  Contact the museum at  lwarren@mfa.org or  phone 617-369-3302. 

Juliette Sterkens to Present at Hearing Loop Dedication at North Kingstown, RI Free Library

photo of Juliette Sterkens
Juliette Sterkens, Audiologist &  Advocate, HLAA Get in The Hearing Loop Task Force

What you need to know about hearing aids and hearing loops:

  • How hearing loops help you hear in large public places
  • Experience a hearing loop at this event

Informational community meeting for people living with hearing loss (and anyone close to them) with Juliette Sterkens

Saturday December 17, 2016 From 2:00 – 4:00 PM

North Kingstown Free Library
100 Boone Street
North Kingstown, RI

Event flyer

 

 

 

 

 

 

 

HLAA’s Katherine Bouton Interviewed on Healtheo360

HLAA’s Katherine Bouton was recently interviewed on healtheo360’s weekly 30-minute live health talk show.

Katherine BoutonKatherine Bouton is a longtime former editor at the New York Times, including 10 years as Deputy Editor at The New York Times Magazine. She continues to write for many sections of the Times, and is a weekly blogger at AARP Health. She is the author of the critically acclaimed ”Shouting Won’t Help” and “Living Better With Hearing Loss. Katherine developed idiopathic progressive hearing loss at age 30 and today wears a cochlear implant and a hearing aid. She currently serves on the Board of Trustees of Hearing Loss Association of America. Katherine is married to the writer Daniel Menaker and they have two grown children.

healtheo360 is a caring community for patients with chronic conditions, their caregivers, family members and friends to share their stories of inspiration, motivation and support. Every Tuesday at 1 PM ET, you can tune in to hear stories of survival, support, and innovative research from leading physicians as well as people just like you.

 

Help Hearing Healthcare Professionals at University of Connecticut Learn About Your Experience with Effortful Listening

cartoon image illustrating auditory fatigueThe Department of Speech, Language and Hearing, Aural Rehabilitation Laboratory Sciences at University of Connecticut is conducting a qualitative research study  on auditory fatigue / listening fatigue.

HLAA members and friends with hearing loss who would like to participate can learn more about the study on the attached flyer and contact Alison.Marinelli@uconn.edu.

Breaking a Logjam on Over-the-Counter Hearing Aids

photo of Katherine Bouton

Katherine Bouton is a longtime former editor at the New York Times, including 10 years as Deputy Editor at The New York Times Magazine. She continues to write for many sections of the Times, and is a weekly blogger at AARP Health. She is the author of the critically acclaimed ”Shouting Won’t Help” and “Living Better With Hearing Loss. Katherine developed idiopathic progressive hearing loss at age 30 and today wears a cochlear implant and a hearing aid. She currently serves on the Board of Trustees of Hearing Loss Association of America. Katherine is married to the writer Daniel Menaker and they have two grown children.

Bloomberg News, y Katherine Bouton

In the uncertainty over the future of U.S. health care, there is one ray of hope for a group of people who need more options, not fewer.

People with hearing loss usually pay out of pocket for hearing aids, and those pockets must be deep indeed. The average cost for a hearing aid is $2,300, and most people need two. They don’t last forever, and if your condition is progressive you may need to replace them as often as every four or five years.

No matter what your income level, hearing aids for adults are not covered by health insurance. They are not covered by Medicare, and they are not covered by state Medicaid programs. The Affordable Care Act does not cover hearing aids. Some private insurers are beginning to pay, but it’s usually only a fraction of the whole. The V.A. and some state vocational bureaus do provide hearing aids. But essentially, you’re on your own.

The good news comes in the form of a bipartisan bill introduced in the Senate by Republican Charles Grassley of Iowa and Democrat Elizabeth Warren of Massachusetts.

Their Over-the-Counter Hearing Aid Act of 2016, introduced on Dec. 1, would make certain basic hearing aids available over the counter and at a far cheaper price than what a decent hearing aid costs today. Whether these devices would be called “hearing aids” under Food and Drug Administration regulations remains to be seen, but they will be hearing-aid-like devices made by hearing-aid manufacturers.

These devices are not for people like me with severe to profound loss. But they are what the more than 30 million Americans with age-related hearing loss could use, at least as starter devices.  [Full story]

HLAA Supports Bipartisan Senate Bill “Over-the-Counter Hearing Aid Act of 2016”

From the National Website of Hearing Loss Association of America:

Sen. Chuck Grassley
Sen. Chuck Grassley

Tue, 12/06/2016

On December 1, 2016, Senate Bill S.9 was introduced by Senators Elizabeth Warren (D-Mass.) and Chuck Grassley (R-Iowa) to provide for the regulation of over-the-counter (OTC) hearing aids. The “Over-the-Counter Hearing Aid Act of 2016” would make certain types of hearing aids available over the counter and remove many of the barriers for consumers who could benefit from hearing aids.

 

Sen. Elizabeth Warren
Sen. Elizabeth Warren

HLAA is a supporter of the bill, along with AARP, the Consumer Technology Association (CTA), Bose Corporation, and the Gerontological Society of America (GSA). HLAA has sent a letter of support to the senators. The full text of the bill has been posted. Senators Warren and Grassley have plans to reintroduce the legislation in the new 2017 Congress. All reports point to solid bipartisan support.

 

 

Background

HLAA is the only consumer-group sponsor of the National Academies of Sciences, Engineering, and Medicine (NAS) study and resulting report Hearing Health Care for Adults: Priorities for Improving Access and Affordability. The NAS report outlined 12 recommendations that would make hearing health care more affordable and accessible for consumers. HLAA has come out in support of all the recommendations contained in the report, and Recommendation 7 specifically states, “The Food and Drug Administration [FDA] should establish a new category of over-the-counter (OTC) wearable hearing devices.” The Warren-Grassley bill is one step toward making hearing devices affordable and accessible.

While the Warren-Grassley bill uses the term “hearing aids,” the final name and definition of what qualifies as an OTC device is determined by the FDA. Whether they are called an OTC hearing aid, OTC wearable hearing device, or something else, they would only be for adults with mild-to-moderate hearing loss. If the bill passes – or if the FDA creates this new category before the bill passes – HLAA will work with industry and the FDA to ensure these products are safe and effective; are clearly labeled with information important to consumers, including whether they meet voluntary industry standards; have clear return policies; and outline any red flags that point to the need to see a doctor before purchase.

HLAA will further work to ensure consumers are educated about these and all hearing amplification devices. This aligns with both Recommendation 11 of the NAS report to “Improve publicly available information on hearing health” and HLAA’s mission to “Open the world of communication to people with hearing loss by providing information, education, support and advocacy.”

HLAA has long valued the expertise and care that audiologists and hearing instrument specialists provide to people seeking help for their hearing loss. We expect many people will continue to seek the skill and expertise of a hearing professional. HLAA’s hope is that the availability of OTC devices will intrigue people who would not otherwise get help for their hearing loss. These devices may even end up being purchased through an audiologist or hearing aid specialist. Further, once people have tried an OTC device they might look to upgrade to traditional hearing aids through the care of an audiologist. To give consumers access to the entire spectrum of hearing assistive devices, we hope to see audiologists turn to transparent pricing that unbundles the cost of the hearing aid from the cost of services. We would also like audiologists to incorporate open programming systems, allowing them to adjust any type of hearing aid, anytime.

When only 20 percent of people who need hearing aids purchase them, something must change. Quality OTC devices were not even possible 20 years ago, but with the technology available today, and the greater innovation that is sure to come, it is possible to build a more affordable, quality basic hearing device. We believe the hearing health care industry is at a crossroads; we must seize this opportunity to ensure that people who want do something about their hearing loss are not prevented from doing so by cost or accessibility.

Summary

HLAA’s goal is to see more people seek help for any degree of hearing loss. HLAA supports the availability of OTC devices as a first step consumers with mild-to-moderate hearing loss can take to address their hearing loss earlier and more conveniently. We believe audiologists still provide the gold standard of care for people with hearing loss and that complex fittings should only be performed by a hearing professional. However, giving consumers a choice to use less expensive and more readily-available devices will be a huge step toward greater awareness about the need for good hearing health care and greater adoption of hearing aids and hearing technology.

Links:

Open Captioned Movie event for HLAA Members and Friends on Cape Cod

Manchester-by-the-Sea movie posterManchester by the Sea will be shown open captioned at:

Cape Cinema
Route 6A
Dennis, MA

December 13, and December 20 at 1 PM

Cape Cinema manager Hugh Hart confirms that Manchester by the Sea will be shown with captions on December 13 and December 20 at 1 PM. Check the website for more details:  http://www.capecinema.com.

The theater is on the grounds of the Cape Playhouse on Route 6A across from Scargo Cafe. It’s a visual treat just to see the historic ceiling mural. Buy a senior pass and save money.

As Nantucket Advocate Penny Snow always reminds us, “You have to show up so they know you are out there.”