Emergency Preparedness for the Deaf and Hard of Hearing

This past summer, people all over the world experienced floods, tornadoes, wildfires, earthquakes and terrorist attacks, not to mention a host of other catastrophes. This is an old column but I thought it was worth reposting. .

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. Learn how to use the flashlight on your smartphone
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. In New York that is Notify NYC.
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.

Vertigo, Redux

I haven’t posted for a while not because I was on a restful summer holiday but because I’ve been experiencing bouts of vertigo and dizziness over the past few weeks. Not only do these sideline me, they also affect my brain.Vertigomovie_restoration

They affect my memory, for starters. As I began to write this post I did a quick Google search and discovered that I wrote the exact column I was thinking of, under exactly the same title (“Deaf and Dizzy”), a year ago. If you want to know more about vertigo, Meniere’s and migraine-associated vertigo (MAV), you should read it. (My diagnosis is MAV.)

Memory loss is just one of the ways vertigo and dizziness mess with your head. During acute attacks, which in my case last for a couple of hours, I have to lie down with my eyes closed. If I open them a crack and see the room still spinning, I shut them again. If I don’t lie down soon enough, I vomit. Even sitting is no remedy. I have to lie prone.

In between acute attacks I’m dizzy. I walk unsteadily and sometime lurch, depending on the intensity of the dizziness. I look like a drunk. It’s not just memory that suffers. The brain seems generally confused. I pour orange juice into my coffee. I try to unlock the front door with my car key. I worry it’s a precursor to dementia but my doctor assures me it’s not.

I can’t detect a trigger for my vertigo, but luckily I recognize the symptoms of onset and can try to get to a safe place before it hits me flat out. For a few hours or even days preceding an attack, the back of my neck aches and the ache gradually spreads upwards. I feel pressure in my left eye. I experience hyperacusis. I may be a little dizzy. I’m tired. But it’s when my eyes swing to the right and the world starts spinning counterclockwise that I know I’m on the edge of vertigo.

Sometimes, the timing is not only inconvenient but dangerous — usually when I’m driving. Before and after a full attack, I can focus on the road ahead and make it to a safe place. Interestingly, focusing on one point is recommended as a way to control vertigo. I couldn’t possibly drive during a full-blown vertigo attack, but experience has shown me that I can get to safety — through what feels like force of will.

Alan Desmond, who writes the blog “Dizziness Depot” on Hearing Health and Technology Matters and is the director of the Vestibular Audiology Program at Wake Forest University, was hit with an episode of vertigo himself recently. He described how he used that focusing technique, training his eyes on a doorknob. I doubt he would ever endorse focusing on the road from behind the wheel of a car as a cure.

I watch my diet. Migraine-associated vertigo, also called vestibular vertigo, is triggered by many delicious foods, among other causes. The Meniere’s Diet is similar. If you look at the list at the banned foods, you may wonder if there is anything you can eat. The Vestibular Disorders Association recommends avoiding red wine, chicken liver, smoked meats, yogurt, chocolate, bananas, citrus fruits, figs, ripened cheeses (for example,  cheddar and Brie) and nuts. All these foods contain the amino acid tyramine. The association also recommends avoiding caffeine and alcohol. Sometimes salt intake is restricted. Aged meats are easy to avoid. Caffeine is not.

Like many with vertigo, I take preventive medication. For me it’s been a small dose of the tricyclic antidepressant amitriptyline, the generic for Elavil. (The dosage is much lower than would be used to treat depression.) That dose clearly had stopped being effective, so now I am taking a larger dose, still well below the antidepressant level. The fact that I’m writing this is an indication that the brain fog is starting to lift. I’m also signed up for vestibular therapy, which is a big commitment of time. But if it works it will be worth it, and I’ll be able to go off the medication.

The biggest mystery to me is that every doctor I have consulted – two neurologists and three balance specialists – says that my vertigo is not related to my hearing loss. I do not have Meniere’s Disease. I have migraine-associated vertigo (MAV) or vestibular vertigo.

MAV is only recently defined and was frequently misdiagnosed as a variant of Meniere’s in the past. The overlap between the two is substantial, and a review study published last year in the journal Behavioral Neurology, comparing the “intimate relationship” between migraine-associated vertigo and Meniere’s, suggests that the underlying causal mechanism may be the same for both conditions. I’ll discuss that study in my next post.

I’d like to know how others handle vertigo. Please comment. We can all learn from each other’s experience.

 

 

About Those OTC Hearing Aids

Thanks to Gael Hannan for inviting me to write about Over the Counter hearing aids for her column this week, on Hearing Health and Technology Matters.

http://hearinghealthmatters.org/betterhearingconsumer/2017/4790/

This puts together much of what I have written previously on the subject, in one tidy package.

Great News for People With Hearing Loss

Today the Senate passed the Over-the-Counter Hearing Aid Act, which HLAA has actively supported, in the belief that this will bring relief to millions of Americans who do not now have hearing aids and improve hearing services for people with all levels of hearing loss.

You can read HLAA’s press release here:

Senate Passes the Over-the-Counter Hearing Aid Act of 2017 | Hearing Loss Association of America

Thu, 08/03/2017 FOR IMMEDIATE RELEASE: August 3, 2017 CONTACT: Barbara Kelley Executive Directorbkelley@hearingloss.org 301.657.2248 Senate Passes the Over-the-Counter Hearing Aid Act of 2017 Bringing Affordable and Accessible Hearing Health Care Closer to Reality Bethesda, MD: The U.S. Senate today…

HEARINGLOSS.ORG

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 Bloomberg 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.

If 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.

shoutingwonthelp.jpg

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.