Good News About Hearing Loss, With Qualifications

Hearing loss is declining, according to a study published on December 15 by researchers at Johns Hopkins School of Medicine.

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At the top of Mt. Etna, April 2016, with Damian Croft of Esplora.co.uk. What does this have to do with hearing loss? Nothing! It’s a New Year’s treat.

This is good news.

But before you put back in those earbuds and conclude that all those reports of an “epidemic” of hearing loss were wildly exaggerated, read a little closer.

The study of almost 4000 adults 20 to 69 years old found that the overall prevalence of hearing loss (as measured in the speech frequencies) dropped from 16 to 14 percent in the years between 1999-2004 and 2011-12.  (Among adults 60 to 69, however, a whopping 39.3 percent still had hearing loss.)

The decline among working age adults was slight but statistically significant. Despite the fact that there was a greater number of older adults, “the estimated number of adults aged 20 to 69 years with hearing loss declined absolutely, from an estimate of 28.0 million in the 1999-2004 cycles to 27.7 million in the 2011-2012 cycle.”

“Our findings show a promising trend of better hearing among adults that spans more than half a century,” said Howard J. Hoffman, M.A., first author on the paper and director of the NIDCD’s Epidemiology and Statistics Program. “The decline in hearing loss rates among adults under age 70 suggests that age-related hearing loss may be delayed until later in life.”

The researchers attributed the decline to a decrease in noisy manufacturing jobs, to increased use of hearing protection (OSHA requirements for hearing protection have helped), to a drop in smoking and to better medical care.

A greater awareness of the dangers of noise may also have helped. It’s no longer unusual to see someone at a sporting event or loud concert wearing protective headphones. It’s the norm for people with ride-on lawn mowers or those doing other kinds of noisy yard work to wear headphones.

But before we celebrate and abandon advocacy for equal access for people with hearing loss, remember that the age group studied is getting older every day. In the coming years we can expect that normal age-related hearing loss will have its usual effects. “Despite the benefit of delayed onset of HI,” the paper concluded, “hearing health care needs will increase as the US population grows and ages.”

We’re still going to need cheaper and more accessible hearing aids. We’re still going to have to defeat the stigma of hearing loss so that people will wear those hearing aids – and help offset or prevent the negative health effects of untreated hearing loss.

We’re making progress against hearing loss, and that’s cause for celebration. But don’t give up the good habits that have allowed us to get to this point. The world is still noisy. We still need to protect our ears. There is still a lot of hearing loss. We need to treat it.

 

This post appeared in a slightly different form on AARP Health on Dec. 22, 2016.

What Do Consumers Want? Try Asking a Consumer.

If you asked consumers what is most important when buying a hearing aid, would they say price or sound quality?

Hearing Tracker, a respected independent online resource for consumers, and USB Evidence Labs recently surveyed more than 360 audiologists about what brands and features consumers ask for most when buying a hearing aid.

Not surprisingly, sound quality came in first by a long shot (56 percent), with reliability a distant second (17 percent) and value for money in third place (12 percent).

I don’t doubt that is exactly what the audiologists’ customers said they wanted. But I also wonder if the answers would have been different if consumers, especially those who never go to an audiologist, had been asked directly. I expect those consumers would say an affordable price was their top priority.

Currently, only 1 in 7 U.S. adults who can benefit from a hearing aid have one. Why don’t the other six?

The answer is cost. “Hearing aids are expensive,” Jan Blustein and Barbara Weinstein wrote in a June 2016 article in the American Journal of Public Health. Medicare and most insurance plans don’t cover them, and so consumers typically pay for aids and fittings out of pocket. And that can get costly. The average cost of a single hearing aid is $2,300, but because age-related hearing loss typically affects both ears, that’s a tidy $4,600 — a sum beyond the reach of many older people. Blustein and Weinstein note that “in a recent population-based prospective study, a majority of participants cited cost as a major deterrent to buying a hearing aid.”

Kim Cavitt, a past president of the Academy of Doctors of Audiology, says audiologists have turned a blind eye to consumer wants. In a recent article headlined “Have We Missed the Signs?” in Hearing Health and Technology Matters, she wrote that consumers “for the past decade have been clamoring for lower-cost amplification solutions,” meaning more affordable hearing aids or hearing aid–like devices.

The devices she refers to are lower-cost products that can effectively help with mild to moderate hearing loss. These won’t replace traditional hearing aids, she wrote but will expand the market by providing a gateway to more advanced traditional hearing aids.

She also noted that consumers want transparent pricing from audiologists — including detailed pricing of various goods and services — and access to assistive listening devices and aural rehabilitation. But mostly, consumers want hearing amplification they can afford.

This month, responding to that consumer demand, Senators Elizabeth Warren (D-Mass.) and Chuck Grassley (R-Iowa) introduced a bill to ease restrictions for getting hearing aids, including eliminating a required medical exam for many devices. The bill was supported by a number of organizations, including AARP and the Hearing Loss Association of America (HLAA), the nation’s largest consumer group representing people with hearing loss.

The legislation preceded an announcement from the Food and Drug Administration that it will no longer require adults to get a medical exam before purchasing certain hearing aids, clearing the way for a new category of over-the-counter devices.

Barbara Kelley, the executive director of the HLAA, endorses both developments.

“Each and every day,” she wrote, “our office receives letters, phone calls and emails from people with hearing loss inquiring about financial assistance to purchase hearing aids (up to 10 requests a day). The financial help page on hearingloss.org is the number one visited page on HLAA’s website. Sadly, there are few financial aid resources. Creating a category of over-the-counter hearing aids will go a long way toward making these essential devices affordable for the millions of Americans who need them.”

Cavitt agrees, although she isn’t by any means discounting the need for audiologists. People with serious hearing loss will always need audiologists and the services that only they can offer, she says.

For now, though, the goal should be finding an easier, financially feasible way to get the remaining 6 out of 7 Americans with hearing loss the devices they need.

 

This post was first published on AARP Heath on December 19, 2016.

For more on hearing loss and hearing health:

shoutingwonthelpLiving Better jpegKatherine 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.

Breaking a Logjam on Over-the-Counter Hearing Aids

Cheaper and More Accessible Hearing Aids Could Also Help Reduce Stigma

This essay originally ran on Bloomberg View, December 12, 2016. HEALTH CARE

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 most 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. If the loss progresses, the need for more sophisticated equipment increases.

The Academy of Doctors of Audiology supports the bill with the caveat that the over-the-counter products “be very specifically labelled and include a strong recommendation that a patient seek a comprehensive audiological evaluation from an audiologist or physician.” There are certain red-flag conditions for which a person should always seek medical aid: sudden hearing loss, single-sided or asymmetric hearing loss, drainage from the ear, pain, dizziness.

But, the academy concluded, “There is a preponderance of data available today which demonstrates that when it comes to hearing loss, the risk of non-treatment may be greater than the risk of self-treatment.”

The Hearing Industries Association, while supporting “efforts to increase the accessibility and affordability of hearing aids,” expressed concern about the self-diagnosis of hearing loss. “The Over-the-Counter Hearing Aid Act of 2016 would compel the Food and Drug Administration (FDA) to allow OTC hearing aids. This will require consumers to self-diagnose both the cause and degree of their hearing loss…. It would do so in spite of the fact that no studies have indicated that people can accurately self-diagnose either the cause or the extent of their hearing loss.”

A week after Grassley and Warren introduced their bill, the FDA in a surprise announcement indicated that it is considering over-the-counter hearing aids, without any Senate mandate. The FDA announced that, effective immediately, it would no longer require adults to get a medical evaluation (or sign a waiver) before buying most hearing aids. It said that it was also considering creating a new category of OTC hearing aids to encourage “new, innovative, lower-cost products to millions of consumers.”

In doing so, the FDA was following the recommendations of two important scientific groups: the President’s Council on Science and Technology and the National Academies of Sciences, Engineering and Medicine. Consumer groups like the Hearing Loss Association of America and AARP have already endorsed these recommendations.

Thirty million Americans suffer age-related hearing loss. Only about 14 percent of them currently use hearing aids. The primary reason for this is the high cost.

Barbara Kelley, the executive director of the nonprofit Hearing Loss Association of America, said the group receives requests every day for information about financial assistance for hearing aids. (Disclosure: I am on the HLAA board.) “Sadly, there are few financial aid resources,” Kelley wrote in a letter to the Senate sponsors of the bill.

The high cost contributes to a second reason people don’t use hearing aids: stigma. Most people don’t use them until their hearing has deteriorated substantially, usually as they age. This means that in the popular mind hearing aids are for the elderly — which is false, since more than half of those with hearing loss are under the age of 60. If all the people of all ages who could benefit from hearing aids used them, they would be as common as glasses.

Making hearing aids more affordable and more accessible also increases use. And as use increases, stigma declines. So do the consequences of untreated hearing loss like depression and isolation, cognitive decline and a greater risk of falls. These are enormous public-health issues, as well as personal problems. Reducing the incidence of hearing-related cognitive decline alone will save billions in health-care dollars.

The Grassley-Warren bill is good for people with hearing loss. Even better is that the FDA seems on its way to making the bill unnecessary.

This column does not necessarily reflect the opinion of the editorial board or Bloomberg LP and its owners.

Affordable Hearing Aids Just Got a Giant Step Closer

Decision Could Make Hearing Aids Available Over-the-Counter
– Getty Images

Buying hearing aids could soon become as easy as buying reading glasses.

In a surprise announcement yesterday, the Food and Drug Administration (FDA) said that, effective immediately, it would no longer require adults to get a medical evaluation before buying most hearing aids.

The agency  is also considering creating a category of over-the-counter hearing aids to encourage more “new, innovative, lower-cost products to millions of consumers,” the agency said in a prepared statement.

The announcement was made at a meeting of the National Academies of Sciences, Engineering and Medicine on hearing health care. Previous recommendations from this group, as well as from a White House advisory panel on science and technology, and consumer and some audiologist groups, had urged easing this restriction to make hearing aids more affordable and accessible.

The decision does not apply to those ages 18 and under, who still must have a medical evaluation before purchasing hearing aids. It also does not apply to bone-conduction hearing aids or to prescription-use hearing aids that are inserted deep in the ear canal.

Age-related hearing loss affects some 30 million Americans, affecting not only their work and social interactions but also their overall health and quality of life. For most, the hearing loss begins before the age of 60. The isolation and loneliness that can result from serious hearing loss have been linked to a higher risk of cognitive decline and dementia.

Despite the high prevalence and public health impact of hearing loss, only about one-fifth of people who could benefit from wearing a hearing aid actually use one, the FDA noted. The high price of the devices — about $4,600 a set — has been a major barrier. Medicare and many private insurance plans don’t cover the cost of hearing aids, so most consumers are stuck paying for them out of pocket.

In addition, six companies manufacture nearly all the hearing aids sold, and only one is based in the U.S., a White House blog post about the FDA decision said.

The impact of the FDA’s move could open the hearing aid market to new companies and more competition.

The ruling was one of several recommended by the Hearing Loss Association of America and other consumer groups. HLAA Executive Director Barbara Kelley commented, “We applaud the FDA’s decision to remove this requirement and believe it is a step forward to remove barriers and make hearing health care for consumers more affordable and accessible.”

“Today’s actions are an example of the FDA considering flexible approaches to regulation that encourage innovation in areas of rapid scientific progress,” said FDA Commissioner Robert Califf, M.D.

 

This post was first published on AARP Heath on December 8, 2016.

For more on hearing loss and hearing health:

shoutingwonthelpLiving Better jpegKatherine 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.

The Day I Lost My Hearing

Every year I observe the day I went deaf. My life changed that day. At first it seemed nothing but negative, a catastrophe. Now I see that it gave me an opportunity, a door that opened onto a new world.

I remember the day because it was a holiday — Halloween. My hearing had been in a steady decline for three decades, but it was on Halloween of 2008 that I realized it was irretrievably gone.

I had started a new job two months earlier, and learning the routines had been stressful. Once I mastered the systems, I began to realize just how hard the actual job was, with too many elements and too many deadlines. I could tell it was affecting my health, but I was only two months into it. No turning back.

On that Monday, I had a routine flu shot. I began to feel woozy that evening, and by Tuesday I was dizzy and slightly nauseated. By Wednesday my ears were blocked. I was also hypersensitive to sound. This wasn’t the first time I’d had those symptoms, and they usually indicated a downward fluctuation in my hearing. I made an appointment with my ear, nose and throat doctor for Friday morning. I continued to suspect the flu shot as culprit, but I knew it was just my hearing, doing its mysterious disappearing act.

I live in New York, and my trip to the doctor was two subway rides. It was morning rush hour and Halloween, a frenzied combination. Teenagers in makeup shouted and roughhoused. Two businessmen hung over my seat talking loudly. A panhandler in a wheelchair hollered his pitch for donations right next to me. The noise was overwhelming. I covered my ears with my hands and shrank down into my seat. At this visit, I couldn’t hear my longtime doctor. He wrote questions for me on his computer. A hearing test confirmed the worst.

Oral steroids are a standard treatment for sudden hearing loss, and although mine didn’t fit that description, he prescribed them anyway, a blockbuster dose gradually decreasing over the next two weeks.

 

I was already stressed and overwhelmed with anxiety. Now I panicked. How could I possibly do my job with my hearing as diminished as it was? I took the rest of that day off, working from home. I sobbed and raged and sank into a fierce depression over the weekend. On Monday I went back to the office. I made vague reference to my hearing having been affected by the virus I’d had but stayed far from the truth.

My hearing never got better. I struggled through another year, pretending to myself that I was managing. I’m a good lip reader, and I set strategies in place to maximize my ability to understand. The following September I got a cochlear implant, but after three decades of profound hearing loss in that ear, it didn’t help much. Still, I thought I was getting away with it. Then a tough new boss came in. He didn’t buy it. I wasn’t a team player, he said.

I left that job at the end of the year. At first it seemed like a huge defeat. But as I gathered my strength and began to consider what to do next, I came to think of my hearing loss as an opportunity. I had been clueless about hearing loss. I thought my situation was unique. I was embarrassed to be going deaf at such a young age. I hid my hearing aids and I tried to hide my cochlear implant. I knew nothing about support groups or advocacy for people like me.

And that was my opportunity. I could share what I learned, and continue to learn, about hearing loss. I joined the Hearing Loss Association of America and found other people like me. I became an expert — writing and talking about hearing loss from the patient perspective, and eventually from the consumer perspective. It’s an interesting transition from patient to consumer. As a patient, you are mostly a passive participant, hoping for the best. As a consumer, you have rights. And as an advocate, you channel both of those roles into making your disability your strength.

I never think about that Halloween without a tinge of sadness. But out of that experience came a chance for a second act. One of the things I have found most interesting in my new life is how many other people have also been forced into a second act, by hearing loss or by other misfortune.

Many of my Hearing Loss Association of America colleagues have also become hearing-health activists, many of us working as hard at it as we ever did in our paid professions. For me, and for others, it’s also far more gratifying than my paid work ever was. And the best part — it’s given me a whole new life.

I know it’s true for others. Please share your experience in the comments section below. If yours wasn’t as positive, remember that mine also had — and continues to have — its downs as well as its ups. Nobody ever said it was easy. But that doesn’t mean it doesn’t have its rewards.

This post was first published on AARP Heath on December 5, 2016.

For more on hearing loss and hearing health:

shoutingwonthelpLiving Better jpegKatherine 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.

Washington University-based Company Launches Auditory Training Website — Hearing News Watch

Good news for those of us who believe auditory training is essential for learning to hear with a hearing aid or cochlear implant.

Audiologists have touted the virtues of auditory training, but for decades numerous attempts at popularizing these programs have been plagued with low patient uptake. A St. Louis company, using an NIH grant, hopes to make inroads by using gaming technology. Washington University-based start-up venture clEAR™ (customized learning: Exercises for Aural Rehabilitation), LLC has officially released…

via Washington University-based Company Launches Auditory Training Website — Hearing News Watch

Deaf and Dizzy: Is It Méniere’s?

Many people with hearing loss also have tinnitus. Some have vertigo. When all three conditions are present, the cause may be Ménière’s disease, first identified by French physician Prosper Ménière in 1861.

man-in-vertigoI emphasize “may” because Ménière’s is notoriously difficult to diagnose. There is no definitive test for Ménière’s. It’s a clinical diagnosis, based on symptoms. According to the Mayo Clinic, the criteria for Ménière’s are two episodes of vertigo, each lasting at least 20 minutes but no longer than 24 hours; hearing loss verified by a hearing test; tinnitus or a feeling of fullness in your ears. The fourth symptom, annoyingly vague, is the exclusion of other known causes of these problems.

Idiopathic Ménière’s (that is, where the cause is unknown, which is true most of the time) is frustrating to both doctor and patient. The diagnostic procedure is basically to eliminate x, y and z possibilities and then settle on Ménière’s. Ménière’s expert Steven D. Rauch, M.D., of Harvard Medical School and the Massachusetts Eye and Ear Infirmary, describes it as one of the most “vexing” clinical conditions that an ear specialist may encounter.

The problem is, when a condition is disabling, you want a diagnosis, and Ménière’s is an easy catchall. Even though the disease affects just .2 percent of the population, the Framingham Heart Study—a long-running, federally funded study on cardiovascular health—found that 1,000 times that number (2 percent) think they have Ménière’s, probably having been told that by a doctor who was as eager for a diagnosis as the patient.

It’s important when diagnosing Meniere’s to distinguish vertigo from dizziness. Vertigo is not the same as dizziness. With the latter, you feel unsteady in a stable world. You walk like a drunk. You have to hold on to things to remain standing. You can’t walk in a straight line.

With vertigo, the world seems to spin around you. The most common type is benign paroxysmal positional vertigo (BPPV), which is treatable by a doctor and with home exercises. It is an inner-ear problem but is not connected to hearing loss. My AARP colleague Candy Sagon has written about treatment for BPPV —Fixing Vertigo With a Turn of the Head..

True vertigo, which is related to hearing loss and may be caused by Ménière’s, often comes on very quickly and can last anywhere from a few moments to days or even longer. Some people suffer from it for months at a time. When you feel an attack coming on, you have to sit or lie down immediately, and you may vomit. I have this kind of vertigo. My acute attacks last for a couple of hours. I can tell that one is coming on when my eyes start to swivel to the left. I’m so drained afterward that I usually sleep for the rest of the day and night.

I don’t have Ménière’s, because I have neither tinnitus nor a fullness in the ears. I also have bilateral hearing loss, and Meniere’s usually affects only one side.

If it isn’t Ménière’s, what, then, is it? In my case it’s probably migraine-associated vertigo (MAV). MAV is equally disabling but usually is not accompanied by hearing loss. So my hearing loss and my vertigo are probably not related. Sometimes Ménière’s and MAV occur in the same patient. But because migraine is so common in the general population, MAV is about 10 to 15 times more common than Ménière’s as the cause.

If you think you might have Ménière’s, you might want to read the article “How Does the Doctor Know I Have Meniere’s?” by Timothy Hain, M.D., of the Chicago Dizziness and Hearing Center, who provides an excellent description.

Ménière’s is not curable — at least not yet — but it is treatable, especially the vertigo attacks. Although almost all sufferers gradually lose hearing in their affected ear, vertigo attacks can be controlled or eliminated in over 99 percent of cases, according to Rauch.

Changes in diet can control vertigo in about two-thirds of patients. It’s important to stay hydrated and follow a lower-sodium diet. Sometimes diuretics are prescribed. Caffeine and alcohol may exacerbate symptoms in some patients.

The Vestibular Disorders Association suggests that triggers may include foods that contain the amino acid tyramine. Examples include red wine, chicken liver, smoked meats, yogurt, chocolate, bananas, citrus fruits, figs, ripened cheeses (for example, cheddar and Brie) and nuts. These are triggers for MAV, as well.

Lifestyle factors such as stress and sleep deprivation can affect vertigo, and managing these can help. Other factors are hormonal changes, allergies and fluctuations in barometric pressure.

If all else fails, surgery can eliminate vertigo in about 5 to 10 percent of the otherwise untreatable cases.

For a first-person description of dizziness and vertigo, I recommend “Hearing Loss vs. Dizziness: If I Could Choose,” by John Brigande, posted by the Hearing Health Foundation in February.  Just reading it made me feel dizzy, though, so be forewarned.

 

This post was first published on AARP Heath on November 14.

For more on hearing loss and hearing health:

shoutingwonthelpLiving Better jpegKatherine 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.

 

Movie Captioning: ADA Issues Final Ruling

ADA.gov United States Department of Justice, Civil Rights Division
Information and Technical Assistance on the Americans with Disabilities Act

Advance Copy: Movie Captioning and Audio Description Final Rule

On November 21, 2016, Attorney General Loretta Lynch signed a Final Rule revising the Justice Department’s Americans with Disabilities Act (ADA) title III regulation to further clarify a public accommodation’s obligation to provide appropriate auxiliary aids and services for people with disabilities. The Final Rule requires require movie theaters to: (1) have and maintain the equipment necessary to provide closed movie captioning and audio description at a movie patron’s seat whenever showing a digital movie produced, distributed, or otherwise made available with these features; (2) provide notice to the public about the availability of these features; and (3) ensure that theater staff is available to assist patrons with the equipment before, during, and after the showing of a movie with these features.

Title III of the ADA requires public accommodations, including movie theaters, to provide effective communication through the use of auxiliary aids and services.  This rulemaking specifies requirements that movie theaters must meet to satisfy their effective communication obligations to people with hearing and vision disabilities unless compliance results in an undue burden or a fundamental alteration.  For a summary of the Final Rule and its requirements, see the “Final Rule Questions & Answers.”

An advance copy of the Final Rule is available below.  The official version of the Final Rule will be published in the Federal Register, and the Final Rule will take effect 45 days after publication.

Final Rule (HTML)

Press Release

Final Rule Questions & Answers

Final Regulatory Analysis and Final Regulatory Flexibility Analysis

Final Rule History

How to Let 911 Know You Can’t Hear

A few months ago, I wrote a post about emergency preparedness for people with hearing loss:  Emergency Preparedness for the Deaf and Hard of Hearing: Tips for Coping with Natural and Man-Made Disasters

This week I received some additional valuable information from Matthew Puvogel, the Ready Outreach Coordinator for the City’s Office of Emergency Management, who was one of the speakers at our Sept. 17 HLAA Chapter meeting on emergency preparedness for the deaf and hard of hearing. I will reprint below. (To reread the post, click on the title.)  Many thanks to Mr. Puvogel for providing this important information.

“Provided below are some resources that you could reach out to for 911 if you have a hearing disability.  

Smart 911:

Smart 911 is an online resource consumers can sign up with. They create a profile, add relevant information such as address, phone number plus other optional information. They can also add additional phone numbers that are associated with their household, cell or landline. More importantly, they can include information about their medical condition, disabilities or access and functional needs. Once they submit their profile, Smart 911 forwards that information to the appropriate PSAP (public safety answering point) which is the local 911 call center that services the phone numbers associated with the consumer’s profile. When a 911 call is placed from any of those numbers, all submitted information (including medical, disability or access and functional needs) is displayed on the screen at the 911 center and would be communicated to the responding agencies. This service is free of charge. For more information go to www.smart911.com.

Another resource is Rapid SOS:

Rapid SOS allows consumers to text to 911. When signing up, the consumer has the opportunity to enter specific information including if they have some form of hearing loss. There is a fee for this service. For more information go to www.rapidsos.com.”

Holiday Hearing – You Can Do It!

This post first appeared on Nov 2, 2015. It seemed worth reposting as we head into the holidays. 

I love the five weeks that begin with Thanksgiving and end with New Year’s, but part of me says, Bah, Humbug.

That’s the part that knows I’ll struggle to follow along at family dinners, holiday parties, concerts and pageants. It’s also the part of me that will want to leave early, or maybe even just stay home.

If you feel the same way, here are a few tips and strategies for making the holidays more hearing friendly. Some of them involve technology but most are purely listening strategies. Listening is an important part of hearing, and you can train yourself to listen better.

One speaker at a time. If it’s a small party, a dinner party with friends, ask that people talk one at a time. Most will cheerfully agree, and then soon forget – we love to interrupt each other. Keep reminding them. It gets easier. One person at a time eventually becomes a kind of natural rhythm in conversation.

If it’s a larger group, focus your conversation on one person. It may take several tries to find the one person whose voice is at a pitch you can hear, who doesn’t have a mustache or beard, thin lips or a strong accent, who doesn’t mumble. But any one person is easier to follow than two or three.

Practice mindful listening. Watch the impulse to say “What?” or “Huh?” Think before you respond. What’s the context of the conversation? What parts of the sentence did you get? Is there a logical missing word? We always tell people with hearing loss not to pretend they’ve heard, not to guess. But guessing can be an effective strategy for getting someone to repeat in a way that makes the whole sentence comprehensible. Instead of “What?” say, “Did you say that Ann or Nan was at the hospital with Carol? I didn’t get the name.” Don’t be surprised when you realize it was Pam.

Be specific about what you missed. Jaclyn Spitzer, Director of Audiology and Speech-Language Pathology at Columbia University Medical School, offers this tip for facilitating conversation. “When you say ‘huh?  or ‘what did you say?’ the speaker doesn’t even know where to start,” she said. “Were you following me for the last ten minutes? Were we effectively getting information across for any part of this conversation? Or do I just have to give you that last sentence?”

Bring a notebook and pen and ask someone to fill in key words when you get lost. “Who are we talking about?” “What country was that?” “Where did he say that happened?”

Seat yourself strategically. That is, not near the kitchen, not near a noisy child, not next to the blowhard who never stops talking. In a restaurant make sure you’re nowhere near the bussing station. There’s nothing like the clatter of cutlery and plates to drown out conversation.

Technology is your friend. If you have assistive listening devices, use them. If you have an FM system or a Roger system ask several people to wear the lapel mikes. Place the Roger pen, in its stand, in the middle of the table. If you have an FM system, especially one that allows multiple conversations, use it. Something as simple as a Pocket Talker can help you be part of the conversation.

Wear your hearing aids!

Give yourself a break. Allow yourself to tune out or even to leave the room for a few minutes.

Give yourself a break psychologically too. If you miss a word, or a sentence, or even the gist of the conversation, examine your reaction. Do you panic? Do you get depressed? Do you get angry? None of these are going to improve things.

If all else fails, admit to yourself and others that it’s just too hard to hear. Say it with a friendly shrug and a smile, especially if they’ve been trying. Have a glass of wine, a second dessert. Play with the baby. Take the dog out for a walk. Invite someone to move over to the couch with you and have a one-on-one conversation.

Look around the room and think how many people there you love – or even just like. And if you look around the room and realize you actually don’t like any of them, and that they haven’t made any effort to include you in the conversation, maybe it’s not worth the effort.

Leave!  But leave because you don’t want to hear them. Not because you can’t.

Hearing Loss? Don’t Neglect Your Eyes

Take care of your eyes and ears
For people with hearing loss, even a small decrease in vision can affect the ability to lip-read and understand better what they hear. — Getty Images/Hero Images

Those of us with more than just moderate hearing loss tend to take care of our hearing.

We make sure our hearing aids are in good working order, and any new symptoms — dizziness, ringing in the ear, a drop in hearing — result in a prompt visit to the ear doctor.

Unfortunately, the eyes, like much of the rest of the body, become more susceptible to disease and other issues as we get older. Some problems are serious and can lead to blindness, if left untreated. But for people with hearing loss, even a small decrease in vision can affect the ability to lip-read and thus understand better what they hear.

The combination of vision and hearing problems can also decrease the ability to socialize, which has been linked to a greater risk of dementia.

A 2014 study of nearly 900 European adults age 75-plus with hearing problems and more than 27,000 Europeans age 50-plus with vision problems found that people with vision or hearing problems were less socially active than those without sensory problems, and those with both vision and hearing problems were the least socially active.

  • Age-related macular degeneration, a deterioration of the portion of the retina responsible for central vision, is the leading cause of vision loss in the U.S. According to the American Academy of Opthalmology, the risk of getting macular degeneration jumps from about 2 percent of people in their 50s to nearly 30 percent in people over age 75.
  • Cataracts, a clouding of the eye’s lens, can affect one or both eyes and are very common — by age 80, more than half of Americans either have it or have had cataract surgery, according to the National Eye Institute.
  • Retinal problems affect people with diabetes disproportionately, but can occur in anyone and can cause blindness if not treated.
  • Glaucoma, the leading cause of blindness, can develop without symptoms, so regular eye checkups are important.
  • Dry eyes may not sound like a problem, but million of Americans suffer from this painful, irritating condition that can affect vision. Some 20 million to 30 million older Americans have a mild condition, while 9 million suffer a moderate to severe case. “In patients over 50, dry eye is the most prevalent — and under-recognized and under-treated — condition out there,” Alan Carlson, M.D., professor of ophthalmology at Duke University School of Medicine, told AARP. “Virtually everyone over 55 has some degree of dryness.” There are treatments, generally over-the-counter eye drops, but don’t ignore the problem. It can result in a deterioration of vision.

Recently I started having painful itching in my right eye and the vision in that eye was blurry. I dismissed this as allergies, but a few weeks ago I began waking up in the middle of the night with stabbing headaches. I knew I should see my ophthalmologist — especially when I realized it had been almost two years since I’d had a checkup.

I regarded these new symptoms as bizarre, but not really worrisome. But when I mentioned them to a physician, she said I should go straight to the eye doctor.

I got some eye drops and made an appointment. In the meantime, I wanted to share the lesson learned. My physician friend put the fear of blindness in me, and I’ll never be so casual about my vision again.

This post first appeared on AARP Health on 10/25/2016.
shoutingwonthelp

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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.

Why Internet is Essential for the Hard of Hearing

No Internet When You’re Hard of Hearing
For those with hearing loss, access to the internet is essential. Getty Images

This past week, we moved to a new apartment and I found myself without high-speed internet — no DSL or Wi-Fi connection at home — for 10 (long) days.

It was an uncomfortable reminder of how vitally important the internet is for people with hearing loss. I did have a smartphone, so I was not completely cut off from communication, but it was very limited. Here’s what no home internet meant for me:

No captioned telephone. I hear on the phone, but not well. Even using the telecoil setting on my hearing aid does not make the speaker’s voice completely clear. Captioned telephones depend on DSL or Wi-Fi for the captioning part of the call, which appears on the screen of your special phone. Two of the major manufacturers of these captioned phones are CapTel and CaptionCall. They are available free of charge to people who can provide proof of their hearing loss, and oftentimes their representative will come to your home to set it up. But you do need a high-speed internet connection.

For captions on cellphones, a company called Innocaption has been developing a system to provide simultaneous voice and captioning. It’s still got some kinks to work out, but when it works, it’s terrific. Unfortunately, at least on my phone (an iPhone 5S) and with my carrier (Verizon), I cannot get voice and captions at the same time unless I have DSL or Wi-Fi. (Innocaption, which has very responsive consumer support, confirmed this in an email: “Unfortunately, Verizon supports voice and data at the same time from iPhone 6, not iPhone 5/5s.”) I need that connection to Wi-Fi.

This is a problem anywhere outdoors, but I live in a big city, and without captions my cellphone is close to useless on the street. This is because electromagnetic interference produces a buzz in telecoil mode that drowns out talk. I guess I need to spring for a new iPhone.

I did have Ava. Ava is a voice recognition system used for in-person conversations. Two or more people sign on to the app on their smartphones. Their voices are simultaneously captioned on each user’s phone, color-coded by speaker. Ava is still in the testing stage, but you can download it here. The version I was using required Wi-Fi, but the newest version, which I downloaded (free) today, no longer requires Wi-Fi. I had a nice conversation with someone in the dog park. I could understand him over the yapping dogs because he was talking into my Ava-equipped phone.

Email was difficult. I’m a voluminous emailer, not only because I’m hard of hearing, but also because of the work I do both professionally and as a volunteer. The volume of mail I receive gets lost on the small screen of a smartphone. For those of us with hearing loss, email tends to be a lifeline for communicating with others. I did email on my smartphone (using satellite technology rather than Wi-Fi). But once I had Wi-Fi again and went back through the emails on my computer, I saw I’d missed quite a few. Also, no matter what size phone screen you have, it’s still pretty small.

Sherry Turkle‘s 2011 book, Alone Together: Why We Expect More from Technology and Less from Each Other, prompted consternation about the “death of conversation” due to an over-dependence on technology.

But for those of us with hearing loss, technology is sometimes the only way we can communicate. In a restaurant we may be looking at our smartphones, but that’s because we’re getting captioning from a program like Ava telling us what the speaker across the table is saying. At the theater we may be looking at a smartphone, but that’s because we’re lucky enough to be at a performance with I-Captions or Globetitles.

Texting and emailing are conversation for people with hearing loss. I was surprised by how handicapped I felt without high-speed internet. I lived two-thirds of my life before the internet came along, so you’d think I’d know how to manage for a week or so. I wasn’t as hard of hearing then, it’s true. But also, once you’ve enjoyed the advantages that Wi-Fi and DSL offer those with hearing loss, it’s really hard to give them up.

This post first appeared on AARP Health on 10/18/2016.
shoutingwonthelp

Living Better jpeg

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.

Charity Events Like HLAA’s Walk4Hearing Raise Awareness and Spirits — As Well as Money

Fall and spring are prime times for charity fundraiser walks and runs, events that raise a substantial part of yearly donations and help raise public awareness for important medical conditions, including hearing loss.

mr-ronnie-jay-and-jody-at-2016-w4h
Singer-Songwriter Jay Alan Zimmerman kicked off the New York Walk with the National Anthem. CART Captions and ASL interpretation allowed everyone to follow along.

Some charities raise hundreds of millions from their annual events, like the American Cancer Society’s Relay For Life, the Susan G. Komen Race for the Cure and the Alzheimer’s Association’s Walk to End Alzheimer’s.

Compared with those behemoths, the Hearing Loss Association of America (HLAA) received about $1.8 million in contributions in fiscal year 2014, according to Charity Navigator, a group that evaluates charity finances. This puts HLAA in the minuscule category, in terms of funds raised. In terms of people served, however, it’s up there with the major groups, considering there are 48 million Americans with hearing loss.

In September, about 1,500 New York area residents of all ages, ethnicities, boroughs and neighborhoods showed up for HLAA’s New York City Walk4Hearing, one of 22 walks around the country this spring and fall. I’m the president of our chapter and saw firsthand this year how much work goes into pulling off a walk. Kudos to HLAA staff and our tireless volunteers.

Our 64 teams were made up of adults and children with hearing loss, families and friends of those with hearing loss, audiology students from eight colleges, and representatives from the Hearing Health Foundation and the Center for Communication and Hearing. We also had walkers from hospital audiology departments and from schools for children with hearing loss. And, of course, walkers from HLAA’s New York City chapter.

We raised more than $125,000 to support HLAA’s education and advocacy efforts to help lower the cost of hearing aids, to get Medicare coverage for hearing aids, and to fund the continuing fight for equal access for those with hearing loss.

This year, the theme of the Walk4Hearing went beyond merely raising money and awareness and general camaraderie. This year’s walk was also a call to action: All walkers and supporters were encouraged to take personal steps to improve their own access to better communication.

These included such simple acts as asking for a captioned telephone at work, requesting assistive listening devices at the movies or theater, and asking your pharmacy to install a hearing loop so that you can understand the pharmacist’s directions. HLAA has an extensive list of the kinds of actions people can take every day to raise awareness of hearing loss and to better their own lives.

We also asked participants to come up with their own ways to speak up, to acknowledge their hearing loss, and to help raise awareness of a condition that affects Americans of all ages.

We also made sure that everyone enjoyed themselves. We walked, we cheered, we laughed, we ate — apples, cookies, even ice cream bars. But mostly we just enjoyed being in the company of so many others like us. By gathering publicly and prominently announcing our cause, we also raised awareness of hearing loss, a largely invisible condition that affects people of all ages, races, and economic and social backgrounds.

I would encourage everyone to consider participating in one of these charity walks or runs — for hearing loss and/or any other condition that has touched your life — for the camaraderie as well as knowing you’re helping a good cause. But before choosing to participate (or to donate), I would check out exactly how a charity uses the money it raises. It’s not uncommon for only 50 cents of every dollar to reach the cause it benefits, according to a 2011 MarketWatch article. The rest goes to expenses. You do have to spend money to make money in most charity events. There are fees for park permits, portable toilets and so on. Some push these expenses to unacceptable extremes. You can also check out Charity NavigatorGuidestar or the Better Business Bureau’s Wise Giving Alliance.

HLAA’s Walk4Hearing is a small event compared to fundraisers for cancer, Alzheimers and others. But that means that every dollar means all that much more. Our $125,000 will go a long way towards furthering awareness, accommodations, and aid for people with hearing loss.

This article first appeared on AARP Health on October 12, 2016.

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.

Emergency Preparedness Plans for Those With Hearing Loss

Tips that go beyond the usual for the deaf and hard of hearing.

Emergency Prep for Hearing Impaired

Tips for those with hearing loss on how to be prepared in the case of an emergency. — Getty Images/iStockphoto

Emergencies happen. Just recently, the country has seen floods, tornadoes, wildfires and terrorist attacks, not to mention a host of other catastrophes. It was also the 15th anniversary of 9/11, which ushered in a new era of emergency awareness.

It goes without saying that everyone should be prepared with an emergency plan. But for people with hearing loss, being prepared goes beyond the usual.

 The Centers for Disease Control and Prevention offers information on its website for emergency preparedness plans, and the American Red Cross suggests what you should have in your emergency kit.

For more specific advice for those with hearing loss, the New York City chapter of the Hearing Loss Association of America recently hosted a presentation on emergency planning for the deaf and hard of hearing. Representatives of New York City Emergency Management offered information about basic emergency planning, as well as these useful tips for adults with hearing loss:

  • Use “legacy technologies.” These include old-fashioned pen and paper for communicating with friends, family and emergency workers if you do not have access to your hearing aid or cochlear implant. Another legacy technology is a landline telephone. Even when cellphones, Internet, power and everything else goes, a landline may still work. Check with your provider.
  • Keep extra batteries in your emergency kit. Be sure to include batteries and chargers to keep your hearing aids, cochlear implants and assistive listening systems safe and working. You’ll want to have several packets of backup hearing-aid batteries and a sealed waterproof container in your emergency kit, for your hearing aid or cochlear implant. The bag or container should be big enough for extra batteries, chargers and assistive listening devices. Don’t forget to include your medications, written copies of your medical information, your prescriptions, and your driver’s license and passport.
  • Consider a portable battery charger. Cochlear implants are more of a challenge during an emergency because their rechargeable batteries generally last at most about eight hours. This is where a portable battery charger — or two, if you want to be extra careful — may be useful. The chargers themselves need to be charged, however, so be sparing in how you use them.
  • Don’t forget your car as a power source. Even when all other power is out, your car (depending on the model, and as long as you have gas) will have some power for charging things like a cochlear implant battery pack, your cellphone and so on. These will be charged through the USB port.
  • Flashlights are a must. They are especially important for the hard of hearing. If it’s dark, you may need a flashlight to help in reading lips. Make sure you have them in your emergency kit and in a handy place in your home.
  • Use Facebook’s Safety Check. If cellular phone service is still working, this feature allows Facebook to notify you in the event of a disaster in your area and ask if you’re safe. You click the “I’m safe” button and the message will go to your Facebook network. Facebook can also give you a list of friends who might be affected by the disaster. Facebook is selective in the disasters it covers with Safety Check, and has been criticized for implementing it in some disasters and not others, but it’s still a good way for the deaf and hard of hearing to check on friends and relatives.
  • Get a weather-alert radio. If you live in an area where tornadoes, hurricanes, floods, landslides or other natural disasters are common, you may want a NOAA (National Oceanic and Atmospheric Administration) weather-alert radio. They come in all price ranges, and a variety can be found by Googling “weather alert radio” or checking online at Amazon. If you are deaf or hard of hearing, you can activate a warning light. Some weather alert radios have an LCD screen for alerts.
  • Sign up for emergency alerts issued by your city or community.
  • Finally, for anyone who lives alone, hearing or not, form a support network.  Ask two or three friends, neighbors or coworkers to be in your network so you don’t go through an emergency alone. Your network partners should make a plan to stay in contact during an emergency. They also should know your medical conditions and needs, and where to find emergency and medical supplies.

From AARPHealth on 9/2916.
shoutingwonthelp

Living Better jpeg

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.