Healthy Hearing

Not Much of a Joiner?

Katherine Bouton #HLAA., effect of #hearing loss on medical care, Healthy Hearing

NYnewyorkcitychapter

“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

Katherine Bouton Healthy Hearing

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?

Katherine Bouton Healthy Hearing, hearing aid costs

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.

Katherine Bouton #HLAA, effect of #hearing loss on medical care, Healthy Hearing, hearing loss, Hearing Loss and dementia

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. 

Hats, Hoods and Other Hazards to Hearing

Katherine Bouton Healthy Hearing

Winter is most definitely here and that means taking special care on icy sidewalks and slippery driveways, and keeping those fingers, toes and noses warm.

snow hoodFor people with hearing loss, there may be other safety issues.

Wearing a hat that covers the ears affects how well you hear. It’s like putting your hands over your ears to block unwanted sound.

Wind, rain and even snow are noisy and will affect how you hear. Nature can easily drown out other sounds.

Traffic noise is louder when the roads are wet.

Snowplows, snow blowers and shovels scraping on sidewalks are noisy.

All this means your eyes are more important than ever in keeping you safe outdoors. But if you wear a coat or parka with a hood, that can affect your vision, especially your peripheral vision. You may need to turn your whole body to check for oncoming traffic.

These are all pretty routine precautions the deaf and hard of hearing should take.

For cochlear implant users, weather poses additional challenges.

A cochlear implant has an earpiece and a magnet attaching the device to the implanted component. The exterior magnet cannot be too strong because it will damage the skin. That means it’s fairly lightly attached. When I take off a hat or scarf, or pull a sweater over my head, it’s very likely to sweep the c.i. off with it. It flies across the floor or into the street or even into the path of oncoming traffic. This is not something they tell you in the c.i. manuals.

If you are unlucky enough to slip on ice or snow and hit your head, the c.i. may also fly off. I lost one that way on a blustery evening. (My head hurt too.)

If you’re not wearing a hat on a windy day, the wind itself can dislodge the earpiece. That happened to me on a ferry last summer. A gust of wind swept my hair and the implant flew right off. Fortunately, the deck of the ferry was metal and so the magnet stuck to the metal deck instead of skittering overboard.

Tight hats or headbands can also be a problem. For me, they put pressure on my hearing aid ear, making it uncomfortable and sometimes evoking a squeal. If I hold an umbrella too close to my head, the spokes act as a magnet and pull the c.i. off.

So what’s the solution? Nothing very insightful. Be careful. Make sure you’re aware of your surroundings at all times. Take your hats, scarves and sweaters off carefully. Don’t wear your cochlear implant out in the wind (especially near water) unless you’re also wearing a hat or scarf to anchor it.

What are your weather-related stories? Advice for others? Please share.

 

In Rural Areas Where Audiologists are Rare, Telemedicine Can Help

Katherine Bouton FDA and hearing aids, Healthy Hearing, telemedicine

In November, the FDA issued a ruling that will make life easier for cochlear implant recipients living in rural areas.

Implant surgery and immediate follow-up for mapping and programming must be done at a medical center or specialized clinic, but the new FDA ruling would allow remote programming for later adjustments. The audiologist and patient communicate via two-way video, with the audiologist programming the implant via computer just as he or she would in person.1495316546168 copy

The new ruling applies to Cochlear America’s Nucleus Cochlear Implant System, but other implant companies will probably follow with similar features. The ruling may eventually apply to programming hearing aids as well.

The FDA approved remote programming for patients age 12 and over who have had their implant for at least six months and who are comfortable with the programming process.

The FDA based its ruling on a clinical study of 39 patients, each of whom had had an implant for at least one year. The study included one in-person programming and two remote programming sessions for each patient. “Speech perception tests one month after each session showed no significant difference between in-person and remote programing,” the FDA said.

Twenty percent of Americans live in rural areas, while only nine percent of physicians practice there, according to an article by Greg Slabodkin in the online newsletter Health Data Management.

This comes to about 62 million Americans, for whom access to affordable healthcare is a major concern, according to an earlier article in Health Data Management. David Schmitz, M.D., president of the National Rural Health Association, testified to a congressional committee last July. He added that broadband providers must invest in the necessary technological infrastructure to make telemedicine possible.

Audiologists in rural areas are even rarer than physicians. Telemedical programming allows qualified audiologists to reach far more patients than they would ordinarily be able to do.

Speaking of the November FDA ruling, Malvina Eydelman, MD, director of the Division of Ophthalmic, and Ear, Nose and Throat Devices in the FDA’s Center for Devices and Radiological Health, said that telemedicine can “reduce the burden to patients and their families, especially those who must travel great distances or need frequent adjustments.”  Cochlear implants need adjustments not only as the user’s hearing adjusts to the implant, but as new technology becomes available. Since programming is done via the external processor, telemedicine is an easy and appropriate tool.