Where Hearing Loss is the Norm

There’s one event a year where my hearing loss is not afb_nyc_chapter FB profile factor in my ability to communicate.

That’s the Hearing Loss Association of America’s annual Convention.

This year’s convention was held in Minneapolis June 21st to June 24th. I don’t know how many attended but virtually everyone was deaf or hard of hearing – or accompanying someone deaf or hard of hearing. A few audiologists also attended – it’s great to see their interest in what people with hearing loss want and need.

Convention is a mix of lectures, workshops, parties, seeing old friends and making new ones.

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At Convention, where hearing loss is the norm.

The larger events – the keynote address, the research forum, the awards brunch – offer three different forms of hearing accommodations: a hearing loop, CART captions, and ASL interpreters. The smaller workshop gatherings provide CART, some offer looping as well, and an ASL interpreter was available on request.  My hearing loss is severe enough that I need CART as well as the loop. The Deaf may use CART to elaborate on what they hear through the ASL interpretation. It’s actually thrilling to be in a place that offers so many different ways to hear

This year’s keynote speaker was Gary Shapiro, president and CEO of the Consumer Technology Association. Consumer electronics are playing an ever larger role in correcting hearing loss. Shapiro’s talk was a guide to this exciting new field of hearing instruments.

The three-hour Friday morning research symposium consisted of a panel of four experts discussing listening in noise. They explained why it is so difficult for hearing aids and cochlear implants to correct for background noise, and technological innovations that  may solve this problem.

As always, there was a large exhibit hall where you could try out new devices, find out how to get a hearing dog, how to add an app to your smartphone to make it easier to understand on a cell phone. My cochlear implant manufacturer, Advanced Bionics, even made a minor adjustment to my cochlear implant at the convention, adding a small magnet to my headpiece, which had been slipping.

The themed Get Acquainted Party is always popular with newcomers and old hands alike. This year’s theme was the 70’s, complete with Go-Go dancers and hilarious costumes. On Saturday evening, Mandy Harvey, a deaf singer-songwriter who was also an America’s Got Talent winner, gave a concert for a few hundred people, some of whom could not resist getting up to dance.

Saturday night, a group went to the famed Guthrie Center for a performance of “West Side Story.”

Workshops on four educational tracks occupied the daytime hours. These tracks included Advocacy, Hearing Assistive Technology, Living with Hearing Loss, and Hearing Loss in Health Care settings. The last category is a new one for HLAA, and it addressed how people with hearing loss can make sure an encounter with the health-care system includes clear communication from health-care professional to patient, and vice versa.

In between formal events, friends met for meals, or a walk in beautiful Minneapolis, or took a trip to the Walker Art Museum and the adjacent outdoor sculpture park. Big name tags with large print make it easy to strike up conversations with new people or those you may have met at other conventions. As a person with hearing loss, I find name tags one of the most gratifying aspects of convention. I am bad at hearing names and bad at remembering them, which makes it hard to initiate a conversation with someone new, and sometimes even with people I know quite well, when the mind balks at remembering. Name tags do the work for me.

Almost everyone at Convention is hard of hearing, and accommodations are provided as a matter of course.  It’s fun – and also something of a relief – to be the norm for a change. Next year’s Convention is in Rochester, N.Y., home to what may be HLAA’s largest chapter as well as the Rochester Institute of Technology and the National Technical Institute for the Deaf. If any city in America can be said to specialize in hearing loss, Rochester is it.

 

The Noise of War

This Memorial Day, as we honor veterans with parades and flags and, yes, barbecues, we should remind ourselves of the toll that war takes on hearing.images

Two and a half million veterans have service-connected hearing disabilities. Tinnitus is the number-one claim for all service related disability, with more than 1.5 million veterans receiving disability benefits for it. Another million receive benefits for service-related hearing loss.

Master Sgt., Donald Doherty, a retired Marine and Vietnam veteran who is now the Chair of the Board of Trustees of the Hearing Loss Association of America, lost his hearing as a result of gunfire and artillery noise during his 1965-66 tour in Vietnam. He has worn hearing aids since June 1970. He recently retired from the Department of Veterans Affairs after 25 years of service.

Doherty is a member of “Heroes with Hearing Loss,” supported by HamiltonCapTel. Heroes with Hearing Loss is group of veterans who hold interactive workshops to help veterans and their families come to terms with hearing loss and find solutions. You can follow them on Twitter at @HWHLVeterans.

Hearing loss is even more an invisible disability in the military than it is elsewhere. Among veterans it is often overshadowed by other injuries. But as Heroes with Hearing Loss notes, hearing loss and other injuries are  “intertwined both physically and emotionally — as a trigger, a constant reminder or an everyday frustration. It is a very unique and personal challenge for many veterans.” The website has a useful list of resources and web addresses. 

For the past several years the group has held a packed workshop at HLAA’s annual convention, which will be held this year June 21-24 in Minneapolis. I wrote about their 2014 presentation in “An Invisible War Wound,” published on November 11th, 2014, Veterans’ Day.

“Marines — and anyone in the armed forces — have been instilled with a sense of pride, the need to act independently, to do it yourself. It’s a sign of weakness if you reach out for help,” Doherty said at that event. Eventually, you realize it’s affecting “not only yourself but everyone around you.” Heroes with Hearing Loss helps veterans accept help.

Captain Mark A. Brogan, Ret., was one of the speakers that year. He was injured in a suicide bomb attack while on active duty in Iraq in 2006, sustaining a severe penetrating head injury, multiple shrapnel wounds, and a nearly severed right arm. He spent months in a coma at Walter Reed Medical Center. It was not until his traumatic injuries had been treated, he said, that he began to be aware of his hearing loss and its permanency.  He also began to realize how hearing loss and TBI were entwined.  The part of the brain that controls speech perception was injured in the blast, he said, and that damage combined with physical injury to the ear to make speech difficult to understand. He knew he needed help, but like many in the military asking for help was difficult.

HLAA was founded in 1979 by Rocky Stone, who also suffered service-related hearing loss. HLAA continues to honor and offer resources for veterans, on both the national and chapter level. Mark Brogan joined the Knoxville, Tenn., chapter: “It’s just good to get with  others who have the same type of disability,” he says.

To see some of the ways HLAA is involved with veterans nationally, go to HLAA’s website, or just click through directly to “Veterans.”

For more information about living with hearing loss, see Katherine Bouton, Amazon.com.

Not Much of a Joiner?

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“I’ve never been much of a joiner.”

I was encouraging an acquaintance with hearing loss to come to one of our HLAA Chapter meetings. I told her about our informative programs and guest speakers. I also said the meetings were a chance to meet other people with hearing loss.

She agreed to give it a try, meanwhile explaining that she wasn’t much of a joiner and not to expect to see her often.

That’s what I always used to say too. “Thanks, but I’m not much of a joiner.”

Here are some groups I never joined: the PTA, a church, the co-op board, the block association, political action groups, yoga classes, meditation groups, group therapy, French classes, Al-anon, dog training.

I always thought I just wasn’t much of a joiner. But suddenly (how could I not have seen this before?) I realized that it had everything to do with my hearing. It’s not that I don’t like people. Or committees. Or volunteer work. Or meditation. Or a well-trained dog. I just can’t hear.

It took me a while to join HLAA. I first went to one of the annual conventions in the course of reporting for my first book. The research seminar that year was on advances in finding a cure for hearing loss, primarily through gene therapy and stem cell therapy. It was fascinating but, more important, I could “hear” it. I could hear it by virtue of the live captioning and the hearing loop that had been installed for the event.

Someone I met there invited me to come to a chapter meeting back in New York. I’m not really a joiner, I said, but come September I did show up at a chapter meeting. Captions! A hearing loop! A really interesting program, with a panel of audiologists talking about hearing strategies.

What I could not do then and still cannot do is join in the socializing before and after the formal program. Luckily we have name tags so I know who I’m talking to, which is a tremendous help. But a substantive conversation is out of the question. Just as I always did before I told people I had hearing loss, in the old days of denial, I nod and smile and ask encouraging questions. But if you’re reading this, and you’ve tried talking to me at a meeting, it’s possible I haven’t heard a word. Follow up with an email!

I’m open about my hearing loss. In fact, I joke that hearing loss has become my profession. But there are certain circumstances that just don’t work for me. One is social time at our chapter meetings. Another is exercise class, which I will write about in my next post.IMG_3613

The photo at left was taken at last year’s New York Walk4Hearing, an annual event that will be held this year on September 23. If you’re not sure you want to try a chapter meeting, come to the Walk. No need to register. Details on our website. 

Learn How to Listen

One of the ways I’ve learned to hear better with my severe hearing loss is by working with Geoff Plant, of the Hearing Rehabilitation Foundation, just outside of Boston. photo-HRF

Over the course of a couple of summers, I would drive to Boston from my house in Western Mass. for a two hour session with Geoff. A few years ago I wrote about a four day summer program I did with Geoff at the University of Connecticut.

Geoff is speaking tomorrow night (March 20th) at the New York City Chapter of HLAA. The meeting starts at 5:30 with socializing and refreshments and the formal program starts at 6. The room has a hearing loop, so those with hearing aids and cochlear implants need just to switch to telecoil mode to hear clearly, and we also have CART captioning. The address is 40 East 35th Street, in the downstairs assembly room of the Community Church of New York. The room is fully accessible and no advance registration is needed. For more information, go to our chapter website: hearinglossnyc.org.

Aural rehabilitation, in the broadest sense, teaches you to listen better. It is often used for people getting cochlear implants and sometimes for those getting hearing aids for the first time. It can take many forms, from computer programs to group sessions to individual sessions with an audiologist or speech-language therapist.

One of the techniques Geoff uses is called KTH speech tracking, a program originally developed by Swedish researchers. Another version was designed by a team at Gallaudet University, a Washington, D.C.

Here’s how speech tracking works: In alternating five- and 10-minute sessions, the audiologist reads from a prepared script, stopping at the end of each line whether or not it’s the end of a sentence or even makes sense. The client repeats what has been read. The audiologist’s computer keeps track of how fast the client is responding. This is done with the speaker’s face visible, and with it covered. Not surprisingly, most everyone does better when the speaker’s face is visible. The exercises are designed to enhance the speed and agility of the brain to hear sound and repeat exactly what was read.

If you’re new to hearing aids or a cochlear implant, auditory rehabilitation helps your brain adjust, which ultimately helps you hear better. The result is improved, faster, more accurate word recognition. If auditory rehab isn’t offered in your area, there are lots of ways to create your own version.

The most important thing I learned from my sessions with Geoff was what I call “mindful listening.” Instead of jumping in with “What?” he helped me learn to think first, to consider the context and what might make sense. This sounds time consuming but in fact it becomes an unconscious habit.

If you’re in New York on March 20, please join us at our chapter meeting to hear Geoff speak.

Geoff Plant’s aural rehabilitation technique is just one of many ways you can practice hearing better. In-person rehab, either singly or group, may be available at a nearby medical center or audiological practice.

You can also try one of the many online programs: L.A.C.E., Read My Quips, Angel Sound, The Listening Room (Advanced Bionics)., Hear at Home (Med-El).

The website for Cochlear Americas includes an excellent article, “Cochlear Implant Rehabilitation: It’s Not Just for Kids!).

HLAA also offers a guide to listening training programs.. 

Photo Courtesy of the Hearing Rehabilitation Foundation.

 

Katherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

What Does a Hearing Aid Cost?

What does a hearing aid cost? At the moment, nobody really knows.

We’ve heard anecdotally about cheaper hearing aids, more places to buy them, non-traditional hearing aids, and unprecedented insurance coverage. Hearing Tracker, HLAA and I put together this survey to see if we could spot some trends.

Please fill out this survey so we have a better idea about the state of the business. Hearing Tracker will report on the results in a few weeks.

And please share it with other hearing aid users. Here’s the link again:

For Better Care for Older Adults, Think Hearing Loss.

Two scholarly papers published this month discussed the impact of hearing loss on patient communication in older adults. Both found that unrecognized hearing loss may have a serious negative impact on health care in the elderly.

In the first, published in the British Medical Journal (BMJ) on January 18, researchers Jan Blustein, a professor of health policy and medicine at NYU, Barbara E. Weinstein professor of audiology at the CUNY Graduate Center, and Joshua Chodosh, a geriatrician at NYU, found that the rate of hearing loss is underestimated in medical settings, and analyzed the effect of undetected hearing loss on doctor-patient communication.

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In the second, published in the Journal of the American Medical Directors Association (JAMDA)  on January 30, the same authors as well as Ellen M. McCreedy, at the Center for Gerontology and Health at Brown University, discussed why hearing loss may be especially disabling in nursing home settings, and provided an estimate of the prevalence of hearing loss in those settings.

Hearing loss in older adults is measured in various ways. One is a catchall number that includes everyone over a certain age:  two-thirds of those over 70 have hearing loss, four-fifths of those over 80 have hearing loss. Sometimes it’s measured by decades: half of those 70-79 have hearing loss; 80 percent of those over 80 do. These figures include everything from mild to profound loss.

Whatever way you count it, however, the elderly experience hearing loss in large numbers. So when the researchers found that federal data indicated that 68 percent of long-term nursing home residents over the age of 70 had “adequate” hearing, it seemed worth investigating.  Was hearing loss just not being recognized in nursing homes? And if so, was it affecting care?

The Federal Data was compiled from the Minimum Data Set (MDS) that all nursing homes are required to report to the federal government. In 2016, nursing homes reported that 68 percent of their residents had “no difficulty in normal conversation, social interaction, or listening to TV.”

That number seemed “implausibly low” to Dr. Blustein and her colleagues. The National Health and Nutrition Survey (NHANES), which is the authoritative source about the rate of hearing loss among adults who live outside of institutional settings, found that only 44% of those 80 and older said that they had “excellent or good” hearing. As the JAMDA paper notes, these two figures are at “striking odds” with each other.

It stands to reason that the rate of hearing loss in nursing home residents should be about the same as that of adults living outside of institutional settings, which would mean that many people in nursing homes and other health care settings are having trouble hearing. They may not be having trouble hearing all the time, but crucial hearing situations are often the noisiest.

Many of those who say they hear adequately probably have mild to moderate age-related hearing loss. Their speech comprehension may be fine in quiet conversation. But nursing homes are far from quiet – studies show that social settings are often very noisy, with televisions blaring, dishes clattering in cafeterias, and residents crying out. Moreover, “high stakes” medical-care situations – emergency rooms, intensive care units, ambulances — tend to be the noisiest. These are also stressful situations, and stress also impacts comprehension.

Hearing aids are one solution, but hearing aid use remains low even in this population. Even if they do have hearing aids, people may leave them at home or in a safe place, to prevent loss or damage.

In both articles, the authors propose easy low-tech solutions for making sure hearing loss doesn’t get in the way of good patient care.

The first is for clinicians to be aware that their elderly patients may have hearing loss, even if they don’t know it. They should also check for impacted cerumen, or ear wax, which can affect hearing.

Every facility should have on hand personal amplifiers that can be shared with patients. The PocketTalker is perhaps the best known. The researchers also mention the Mino and the Sonido Listener. These devices cost about $150.

Health care workers also need to be mindful of communication strategies: they should make sure they have the listener’s attention, face the listener, speak clearly but not too slowly, rephrase rather than repeat words the listener has not understood.

Dr. Blustein (who has hearing loss herself and who serves on the Board of Trustees of the Hearing Loss Association of America, as do I) believes that hearing loss profoundly affects communication with patients. “Those of us with hearing loss often smile and nod so that the world thinks that we understand. It’s much more convenient. It’s easier. A patient may nod and smile, but not really understand what she is being told,” she said in an interview with the BMJ. Busy clinicians, too, may just want to move on, get their work done. So both the patient and the clinician may be contributing to the detriment of good patient care.

Unrecognized hearing loss can also sometimes be misdiagnosed as a cognitive impairment. “I think… my intuition… is that this is one of the great issues,” Dr. Blustein told the BMJ. “It’s sort of low-hanging fruit in clinical medicine, the assumption that someone has cognitive impairment when they don’t respond appropriately.”

Asked why the effect of hearing loss on good communication has remained unrecognized by many doctors, Dr. Blustein replied: “I think disability, generally, is not something that medicine is attracted to. We tend to be attracted to really dramatic, acute illness. Disability is complicated, it takes time.” And, she added, it occurs primarily in older people. “This is dismissed as ‘normal aging’. It’s ageism.”

People with hearing loss share some of the responsibility. Both patients and providers will benefit from the Guide for Effective Communication in Health Care, created by Jody Prysock and Toni Iacolucci. It includes information specifically for patients and their families (including a form that can be filled out in advance of medical interactions and should be entered into patient charts) and for providers. It can be found on the New York City Chapter’s website under Resources, with a link to the national website.

For people with hearing loss, it’s important to be honest, to disclose our disability. For providers, it’s important to recognize that hearing loss may be a factor. It’s a two-way street.

 

For more information about living with hearing loss, read my book “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.