How I Learned to Love My Cochlear Implant.

In 2013 in my first book, “Shouting Won’t Help,” I wrote about the difficult experience I had adjusting to a cochlear implant I received in 2009. That section was excerpted in Bloomberg View and it is still easily available online.shoutingwonthelp

I often get letters from people who have seen the article and are worried by the information in it. They write to ask if they should get a cochlear implant. (Needless to say, this is a question only they and their medical professionals can answer.) Part of the concern stems from the title, “Cochlear Implants Are Miraculous and Maddening.” If you read the article carefully, as I just did, you won’t see me damning cochlear implants. But you will see me raising some caveats.

I am 100 percent in favor of getting a cochlear implant if you qualify for one, and if your hearing aid no longer works for you. I am also 100 percent in favor of aural rehabilitation after the implant. If your implant center doesn’t offer aural training, look for it elsewhere. A speech language-pathologist is one possible provider. There are many online training programs, the best known of which is L.A.C.E. This is a graduated program that starts with speech at a decibel level you can hear (this is determined before you start the program) and gradually increases the noise level in the background. I have written about aural rehabilitation previously on this blog, and you can find other suggestions there.

So how did I come to love my cochlear implant after my initial tepid embrace?

The first answer is practice. I have taken formal and online aural rehabilitation courses. I’ve worked one on one with a speech language pathologist. I listen to recorded books and then read the text to make sure I’ve gotten it right.

The second answer is consistent use. I wear the implant all day every day.

The third answer is technology. The cochlear implant I got in 2009 was not nearly as sophisticated as the replacement implant I got in 2014. (Most implant companies upgrade the external processor every five years.)

The fourth answer is support. I am active member of the Hearing Loss Association of America. We meet regularly and we share tips and experiences. I am always learning new things about hearing.

The fifth is to have reasonable expectations. Is my hearing perfect? Far from it. I need assistive listening devices and captions to hear in a group. I use captions to watch TV. I use captions at movie theaters. I say “What?” a lot. But I live an active daily life in the hearing world, and rarely feel disabled.

But without my cochlear implant I would hear almost nothing. My hearing loss is progressive and the hearing in my hearing-aid ear continues to drop. I am already planning for a second cochlear implant. I qualify now (many times over) but my hearing aid is adequate and this is one area where I follow my own advice: If you can still hear with a hearing aid, hold off on a cochlear implant.

Living Better jpegIf your hearing aid is no longer adequate, start your research. I have written a great deal about cochlear implants and with every writing my optimism grows. The paperback version of “Shouting Won’t Help” is more upbeat on cochlear implants than the hardcover was. My 2015 book “Living Better with Hearing Loss” offers more updated information than the earlier books, and also reflects my comfort and satisfaction – and gratitude! – for having a cochlear implant.

 

For more information on living with hearing loss, see my books on Amazon.com.

The Toll of Hearing Loss is Global

A new study published in the prestigious medical journal The Lancet offers an unblinking look at the tremendous burden of hearing loss worldwide. “Global hearing health care: new findings and perspectives” was published on July 10th. The authors are Blake S. Wilson, Debara L. Tucci, Michael H. Merson and Gerard M. O’Donoghue. The first and fourth authors organized a three-day discussion at Duke University on the subject, which was followed by a massive review of the existing literature.images

Half a billion people have disabling hearing loss, a number that is far higher than earlier estimates. This is not just a little trouble hearing the TV, your wife mumbles, this restaurant is too noisy hearing loss. This is disabling hearing loss.

“Disabling” means that 500 million people worldwide cannot hear well enough to learn to speak (if they are children), with resulting lower literacy and lower quality of life. If they are adults, “disabling” means they may have a sense of profound isolation, typically withdrawing from community and family, prone to psychological illness and likely to develop earlier and more severe dementia than their peers. “Association is not causation,” as the authors remind us, and in fact causation is the subject of a number of ongoing research studies into the hearing loss/dementia link. But the numbers are alarming: “Indeed, the hazard ratio for developing dementia increases two, three, and five times with mild, moderate, and severe losses in hearing, respectively.”

Eighty percent of those with disabling hearing loss live in low and middle-income countries, and their hearing loss has severe economic and personal consequences. But those in wealthy countries are not immune to these consequences. “In high-income countries… adults with disabling hearing loss have twice the prevalence of unemployment and half the median income of their normally hearing peers.”

The answer, the authors say, is twofold: prevention and treatment. Prevention and treatment of childhood hearing loss would be most effective in poorer countries. Special attention to adults would be more effective in wealthier areas.

Prevention could reduce prevalence by 50 percent or more in some regions of the world, according to the World Health Organization. These preventive efforts include vaccinations against rubella, measles and mumps; education and treatment of HIV, syphilis, hypertension and other conditions. It also includes maternal nutrition and neonatal care, attention to ototoxic drugs, and and universal hearing screening of infants. Chronic or acute otitis media should be treated promptly with antibiotics.

Treatment costs could be reduced by strategies like more competition and lower prices for hearing devices, a change in service provision – and “with disruptive and parsimonious designs” of hearing aids and cochlear implants.

These parsimonious and disruptive designs include many of the solutions now being discussed in the United States: the use of personal amplification devices (PSAP’s), smartphone apps, elimination of the need for a physician’s clearance, revision of regulatory requirements to allow “more competition and comparison shopping for hearing aids.”

Sound familiar? That’s because these are the very same recommendations made by the National Academies of Sciences, Engineering, and Medicine in June 2016, and the earlier PCAST report to the President.

The report calls for a global initiative to reduce “the currently unbridled burden of hearing loss.” It cites the interagency partnership VISION 2020, which began in 1999 with a goal of reducing avoidable vision loss by 2019. Indeed, as the study points out, disabling hearing loss is almost twice as common as disabling vision loss. In the category of mild to complete loss, hearing loss outnumbers vision loss by 46.2 v. 24.5 million in years lived with disability. Hearing loss is the fourth leading cause of disability worldwide.

The report is complex and fascinating and if you are interested in reading the full report please contact me via the comments section on this blog.

And if you suspect you have hearing loss, be grateful that you live in a country where you may be able to find treatment at a reasonable cost. Over the counter hearing aids will not become a reality for several years, but in the meantime get a hearing aid if you can afford it, try Costco or good online retailers for lower prices, get a PSAP if you can’t afford a hearing aid, try out some smart phone apps. But don’t ignore it.

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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. 

The Politics of OTC Hearing Aids

Many people with hearing loss, and many professionals involved in hearing health care, either support or disagree with the Over the Counter Hearing Aid Act currently being considered by Congress. Their reasons have to do with their view of what’s best for people with hearing loss.

I’m a strong supporter, as readers know. I don’t think Medicare coverage will ever happen unless hearing aid prices down come down. I also realize that while Medicare may not cover OTC hearing aids for mild to moderate hearing loss, it might recognize more serious hearing loss requiring expensive hearing devices as the legitimate medical condition that it is. So those of us who have to pay $3000-$4000 for adequate hearing aids may at last get some relief from Medicare. (Cheaper hearing aids may also get Medicare coverage, of course.)

I also believe that OTC hearing aids will be a gateway device for that 85 percent of people with hearing loss who do not now treat their loss. Competition will help bring costs down. More widespread use will help reduce stigma.

The Hearing Loss Association of America supports this bill. AARP supports the bill. The American Academy of Audiology (AAA) is neutral, the Academy of Doctors of Audiology  (ADA) supports it.

So who opposes it? The American Speech-Language-Hearing Association (ASHA), a  group representing hearing-health care professionals. So does the Hearing Industries Association (HIA).

And so does the gun lobby.

Yes, you read that correctly. Hearing Health and Technology Matters has been following the opposition. The Gun Owners of America oppose the bill, HHTM reports. So does Frontiers of Freedom, a non-profit conservative group based in Washington, DC. The opposition seems to stem primarily from the fact that one of the sponsors of the nonpartisan bill is Elizabeth Warren. The gun lobby says it fears it will restrict gun-owners’ rights.

Some Republican Congress members have resisted the conservative onslaught and recognize the value of the bill to their constituents. One of these is Congressman Vern Buchanan, who has represented Florida’s 16th district since 2013,  a district that holds the fourth-highest population of seniors aged 65 and older of any congressional district in the US.:  You can read HHTM’s article here: Florida Congressman the Latest to Co-Sponsor OTC Legislation, Despite Negative Ad Campaign Targeting GOP Supporters.

Republican co-sponsor of the bill, Chuck Grassley, of Iowa, tried to allay gun owners’ fears, stating  that “The Food and Drug Administration has made clear the bill wouldn’t compromise personal sound amplifiers that hunters use. However, language will be drafted to make clear that such devices are not affected just to be safe.”

So tell the gun lobby to mind its own business. The hearing health of millions of Americans is not part of it.

** For more on hearing health and hearing loss see “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” and “Living Better With Hearing Loss,” both available on Amazon.com.

 

 

Advocacy: Lessons Learned

My friend and HLAA colleague Ruth Bernstein gave me permission to repost this excellent essay.

Posted by Ruth Bernstein on May 5, 2017

Sound Advice by Ruth D. Bernstein

I have a history as an advocate for people with hearing loss which goes back many years. In the process of advocating, I’ve learned many lessons, a few of which I want to share with you in recognition of Better Hearing and Speech Month.

Lesson One – Coping with hearing loss is a 24/7/365 business. It is an integral part of life. I’ve chosen to make advocacy one of the priorities in my life because I have been very lucky and had constructive, compassionate help from the professionals I’ve dealt with. I want to return that help and compassion to others. I also discovered along the way, I’m a bit of a ham and like sharing my ideas with an audience.

Lesson Two – Asking for what we need in detail, in writing and in advance is useful, e.g. asking for CART, an assistive listening system, a seat that gives a good view of the speakers or stage, a hotel room that is wired with alerting devices. These requests allow us to participate in activities we might not have been able to enjoy otherwise. They also encourage people with hearing loss who don’t know about these accommodations to learn about them.

Lesson Three – Explaining why we need accommodations educates the people we deal with. It puts a human face on the problems people with hearing loss encounter. I’m always pleased to hear “Thank you. I learned a lot from you.” Sharing resources and making referrals to your network can be helpful in solving a particular situation.

Lesson Four – Having a sense of humor is a big asset in dealing with the frustrations of hearing loss. At a job interview, the batteries in my hearing aids went dead. Very calmly, I looked at the interviewer and said, “The number you have reached is temporarily disconnected. I have to change the batteries in my hearing aids.” The look of astonishment on her face was wonderful. I had not told her I had a hearing loss when I went into the interview! My other favorite line is “Don’t speak until you can see the whites of my eyes.” It is much more effective than saying “Please face me when you speak.”

Lesson Five – Saying “please” and “thank you” are invaluable tools in smoothing the way to requests that, for one reason or another, may be difficult to fulfill. Everyone wants to be treated with respect and appreciates having their efforts recognized.

Lesson Six – Look for win-win solutions to accessibility problems. You get the accommodation. The supplier gets more business, good PR and a grateful citizenry.

Lesson Seven – Getting angry accomplishes nothing!

Lesson Eight – Join organizations like the Hearing Loss Association of America (HLAA) so you can meet others who are dealing with the same problems you are – you are not alone! – and learn as much as you can about your hearing loss, hearing aids, cochlear implants, assistive devices and helpful coping techniques. CHC also has support groups for people with hearing loss.

Learn more about CHC’s support groups »

Lesson Nine – Hearing loss is not a fatal disease. It is frustrating, annoying and difficult to cope with. Although recent research shows untreated hearing loss can affect your physical and mental health and your memory, there are a growing number of ways to address hearing loss through technology and counseling. Take advantage of them by coming to CHC and joining HLAA-NYC.

Become an HLAA-NYC Chapter Member »

Get your hearing checked at CHC »

Lesson Ten – Hearing loss is an invisible disability. Each time we speak up, we make it more visible! Become an Ambassador for Hearing, explaining what we need, why we need it, how important it is to each of us and how grateful we are for the services we receive, even if they aren’t perfect. Participating in community activities is also helpful. Please join CHC and HLAA-NYC at the New York City Disability Pride Day Parade on Sunday, July 9, 2017.

Learn more about NYC’s Disability Pride Parade »

– See more at: http://chchearing.org/blog/hearing-loss-advocacy-lessons/#sthash.iTwE6BSb.dpuf

Flying this Summer? Hints for Your Hearing Aids

As this year’s summer travel season approaches, news of heightened airport security is making some people with hearing aids or cochlear implants nervous about what they may encounter as they go through TSA screening.

Earlier this month, the Department of Homeland Security announced that the current ban on laptops and tablets, including some E-readers, on international flights from mostly Muslim countries in the Mideast and Africa would be extended to flights from Europe as well. After a meeting in Brussels last week, EU and American officials decided against the ban, in part because of the danger from fires in the hold caused by lithium batteries.

But the proposed ban raised the issue of electronics and security once again. Travelers with hearing aids and cochlear implants should rest assured that these will not set off alarms as you go through security screening.

It’s best to wear your hearing aids, in fact, for several reasons. The first is that they will allow you to hear questions from the TSA agents, which is important. You may even be able to hear flight announcements. The second is that hearing aids or cochlear implants and their various assistive devices in your carry-on baggage might prompt a bag search simply based on the shape and metallic content.

The best thing is to tell the security desk that you are wearing a hearing aid or cochlear implant. If the alarm goes off as you go through the security gate, it’s probably because you forgot to take off your belt or left your keys in your pocket. If you are pulled aside, explain again that you have a hearing aid or cochlear implant.

On the plane itself, you may want to remove the aids if the plane is too loud. Noise-cancelling headphones can help cut the noise and may also allow you to enjoy the inflight entertainment, which the airline-provided earbuds would probably not. (Note to airlines: We’re still waiting for captions on in-flight entertainment!)

Don’t put your hearing equipment – or any other valuables or medications – in your checked bag. Bags are too easily lost in transit. Although the bag will probably eventually make it back to you, you want to have everything essential in your carry-on luggage.

If your hearing loss prevents you from hearing announcements in noisy airports, check off “disability” when you buy your ticket. Even if you specify that your disability is hearing loss, you may be met at the gate by a wheelchair. (This has actually happened to several friends of mine!)

But you will also be offered pre-boarding, which is definitely preferable to being caught in the scrum at the boarding gate as people wait to hear their zone called.

So wear your hearing aids, keep your valuables in your carry-on bag, and don’t forget your sense of humor!

 

For more on traveling with hearing aids and cochlear implants, see “Traveling with Chargers (and Hearing Aids).”

For more information on living with hearing loss, see my books on Amazon.com.

 

 

 

OTC Hearing Aid Act Moves Ahead

On Friday May 12, a Senate bill containing a provision for FDA-approved Over the Counter Hearing Aids passed from committee to the full Senate, where it is expected to pass.

This is an enormous step towards cheaper, more accessible hearing aids, which should help lower the cost of all hearing aids, even high-end hearing aids, which can now cost up to $6000 each, and which average about $2400 each.

This is an important bill, in my opinion, and in the opinion of other advocates for people with hearing loss, including the Hearing Loss Association of America. For more on this, see my previous post, What Exactly is an Over the Counter Hearing Aid.  The comments, especially one from Ben Kaufman, are also informative.

Here’s an article from Modern Healthcare on Friday’s committee vote:

“FDA User-fee Extension Breezes Through Senate Committee.”
The act, which calls for more than $400 million in additional user fees to be collected from the makers of prescription brand drugs, medical devices, generic drugs and “biosimilars” looks to expedite new drug approvals. The committee added amendments aimed at increasing competition.  READ MORE

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