My New Book

SMART HEARING: Strategies, Skills and Resources for Living Better with Hearing Loss. Smart Hearing_Cover_highres

You can get it online at Amazon or Barnes & Noble, in paperback or ebook for Kindle or Nook.

If you’re one of the the millions of Americans who have experienced hearing loss, whether newcomer or longtime veteran, this book is for you. It’s also for your friends and family, employers, counselors, clergy. Hearing loss is much misunderstood.

If you follow my blog, you’ve read some of this, but there’s much much more. Smart Hearing is an easy-to-read, comprehensive look at a big, confusing field. I hope you’ll read it, and share it with others who don’t seem to fully get what it is like to have hearing loss.

The opening chapters are about the basics: how to find an audiologist, how to buy a hearing aid, and how pay for it. Later chapters guide you through the world of assistive listening technology, CART captioning, hearing loops, and telecoils. Find out what a cochlear implant is, and who can benefit from one. Chapters on tinnitus and vertigo offer suggestions for prevention and treatment. (In the case of vertigo, some of the suggestions are from personal experience.)

The past year has been a tumultuous time in the hearing-health field. Smart Hearing untangles the confusion about over-the-counter hearing aids, PSAPs, the FDA and what it approves and what it doesn’t.

Everyday experiences are often frustrating for those with hearing loss: dinner parties, travel, work, restaurants. There’s a chapter on managing each of these challenges.

Finally, Smart Hearing urges reader to take note of the sometimes significant health costs of not treating hearing loss.

I hope you’ll read it and share it, and maybe even get your library to order it.

FDA Approves an OTC Hearing Aid

For the past year or so since the Over-the-Counter Hearing Aid Act of 2017 was passed, I and other hearing-loss advocates have patiently explained time and again that right now there are no OTC hearing aids. That’s because the FDA approval process includes a three-year comment period before it publishes its final regulations. And until that time, only hearing “devices” can be sold over the counter.

Or at least that was what we thought. Last Friday (October 5), the FDA took almost everyone by surprise when it announced that it had approved a Bose hearing aid that consumers will fit and program themselves.

The Bose Hearing Aid, the FDA announcement said, is intended for adults over 18 with perceived mild to moderate hearing loss. “This is the first hearing aid authorized for marketing by the FDA that enables users to fit, program and control the hearing aid on their own, without assistance from a health care provider,” the announcement said. The wireless device processes sound through an earphone in the ear canal, and the user programs the aid on a smart phone.

The FDA does require compliance with sales regulations, “including state laws that might require hearing aids to be purchased from or dispensed by a licensed hearing aid dispenser.”  I’m not sure how many states have that regulation. Would welcome enlightenment.

The Bose Hearing Aid is not yet available, nor has the price been set, but Bose has landed a huge coup. As Abram Bailey at Hearing Tracker noted, “Bose has effectively been granted a very unique position by the FDA.”

The Bose Hearing Aid will be a new product, according to Sandy Weiss at Bose, rather than an adaptation of Bose’s Hearphone, which is a PSAP. As for when they will be available, Ms Weiss said in an email, there is as yet no new product announcement or distribution plan. She added that while details about future pricing are confidential, Bose does “expect to offer more affordable solutions than traditional hearing aid solutions currently on the market.”

So what made the FDA decide to approve this particular hearing aid? After reviewing data from clinical studies of 125 patients the FDA found the results persuasive enough that it approved the Bose Hearing Aid under its De Novo premarket review pathway. The De Novo pathway allows expedited approval of “low- to moderate-risk devices that are novel and for which there is no prior legally marketed device”. (Click here to see a list of other devices approved under the De Novo pathway so far in 2018.) Not only were the results of self-fitting comparable with those of a hearing professional, the FDA noted, but participants in the trial generally preferred their own settings over those selected by a hearing aid professional.

The announcement was made after the close of the European stock markets on Friday but by 10 AM Eastern time on Monday, the shares of the Danish companies GN Store Nord and William Demant Holding had each fallen by 13 percent, with Switzerland’s Sonova dropping 10 percent The American markets saw a similar drop. Obviously Bose, a privately held company, is seen as a threat to conventional hearing aid sales.

 

 

 

Want to Help People with Hearing Loss?

Dear Readers,

This is an unabashed pitch for contributions to the Hearing Loss Association of America, which has helped me and millions of others to live better with hearing loss. Please help sustain HLAA’s advocacy and education by supporting me in this year’s Walk4Hearing, our annual fund-raising and awareness event, which takes place September 23.fb_nyc_chapter FB profile

Click on this link now before you forget. Fill in my name in the space provided on the right (you may need to click on “participant”). Join our team, or donate to support our work.

HLAA has worked tirelessly to change the way hearing aids are sold, resulting in the passage of the historic Over the Counter Hearing Aid Act of 2017, which will benefit many millions of people who cannot now afford hearing aids.  The next step is to get health-insurance to cover the cost.  Currently, Medicare does not cover hearing aids, a proven health benefit to the 30 million older Americans who need them.

Hearing loss is no minor nuisance associated with growing older. It affects people of all ages and has been linked to depression, lost employment, cognitive decline and a greater risk of falls in the elderly. It is usually totally treatable.

         Please help sustain and advance our work by donating to our annual event. Click on this link to support me personally (by clicking on my name) or our team. 

Your contribution will also help support the New York City chapter of HLAA, of which I am the president. We provide support and education to New Yorkers with hearing loss, and we have lobbied successfully for hearing access in both public and private venues.

Mayor 2017 bill
March 21, 2017, New York becomes the nation’s first major municipality to require hearing loops in places of public assembly.

Thanks to HLAA advocacy, the city has installed high-quality hearing assistive devices—hearing loops – in City Hall, and in 2017 passed a law requiring all new and renovated city buildings to include at least one meeting space with a hearing loop. Live captioning and ASL interpreters are also available on request.

If you love movies, you have probably encountered the captioning devices now available at all chain theaters and many independents. If you are a theater-goer, check out the Gala-Pro app that provides captioning on your smart phone or tablet for all Broadway and many off-Broadway theaters, many of which also have hearing loops.  If you like restaurants but hate the noise, two new smart-phone apps, iHearU and Soundprint, allow you to check in advance the noise levels of a particular restaurant, and to make your own rating. Yelp for noise!

All of these were achieved through HLAA advocacy.

Thanks for your past contributions. Even small donations make a big difference.

 

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.

GIRLS OF MINNEAPOLIS
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?

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.