New to Hearing Loss? Here's the Help You Need!

© October 2006 by Neil Bauman, Ph.D.

"Help! I'm losing my hearing. What do I do? Who do I see? Where do I go for help?" If you are anxiously groping for the answers to these and other questions regarding your hearing loss or the hearing loss of a close family member, take heart. There is a lot of help available—if you know where to look—and this article will show you a number of good places to start looking.

At the most basic level, there are just three things you need besides a willingness to do something about your hearing loss. They are:

1. Help from qualified hearing health-care professionals.
    
2. Support and friendship from other hard of hearing people who understand what you are going through.
    
3. Sources of detailed information on hearing loss (and/or other ear-related issues such as tinnitus or balance problems) and information on how to successfully cope with these problems.

If you address each of these three areas, you will soon be well on your way to successfully living with your hearing loss.

1.  Hearing Health-Care Professionals

It is always wise to see a medical doctor as soon as you can after you realize you have a hearing loss in order to rule out any medical causes for your loss. It may be as simple as wax in your ears, or as serious as a tumor in your brain. Since few general practitioners know much about hearing loss, ask to be referred to an ear specialist—ENT or Otologist.

Ears Nose & Throat Doctor (ENT): ENTs are also referred to by the tongue-twisting name of Otolaryngologists. (Otologists are ENTs who have taken further training and specialized in just ears.) These doctors are experts in the medical aspects of hearing loss. If they can do anything medically to correct your hearing loss, they will do it. The American Academy of Otolaryngology—Head and Neck Surgery (AAO-HNS) website has a "doctor locator" so you can find the ENTs and otologists nearest you.

If these doctors tell you that there is nothing that can be done for your hearing loss, don’t lose heart. All they are really saying is that there is nothing they can medically do for your hearing loss. Your next step is to visit an audiologist.

Audiologist: Audiologists are specialists in testing and evaluating your hearing loss. (Some ENTs have them on staff.) Ask for a "complete audiological evaluation." This will tell you how bad your hearing is, and whether hearing aids can help you. Most audiologists also sell and fit hearing aids. The American Speech- Language-Hearing Association (ASHA) website has some good information on hearing loss. It also has an "audiologist locator" so you can find the audiologist nearest to you.

Hearing Aid Specialists: If your audiologist determines you need hearing aids, you are free to shop around to find the best price and best service at a location convenient to you. If you do not purchase your hearing aids from an audiologist, check that the hearing aid dealer you choose is a member of the International Hearing Society (IHS). It's even better if he is a board certified hearing instrument specialist (BC-HIS). The IHS website contains some good information on hearing loss. In addition, it has an HIS locator so you can find a hearing aid specialist near you.

2.  Support from Hard of Hearing People

Hearing loss hits you at the core of your being because it limits your ability to communicate with those around you. Therefore, you feel cut off. As a result, you desperately need the support and friendship of other hard of hearing people like yourself in order to help you successfully cope with your hearing loss. They know the "potholes" in the road ahead and can guide you safely around them.

You can join a "physical" organization where you will meet face- to-face with others like yourself, or you can join one of the various "cyber" (on-line) groups, or do both. (I recommend both. In fact, I am a member of most of these organizations.) Here are a number of the better ones.

Physical Organizations

Join one (or more) of these physical organizations that most closely meets your needs. Each have their own particular strong points.

Hearing Loss Association of America (HLAA): If you are an adult with hearing loss, strongly consider joining the Hearing Loss Association of America (formerly Self Help for Hard of Hearing People). HLAA is the national voice of hard of hearing people in the USA. They have 250 plus chapters scattered throughout almost every state in the Union. For more information, visit the HLAA website or phone them at (301) 657-2248 (V/TTY). Get the contact information for the nearest chapter.

Canadian Hard of Hearing Association (CHHA): If you live in Canada, instead of joining HLAA, join the equivalent organization that serves Canadians—the Canadian Hard of Hearing Association. Locate the nearest  branch/chapter.

Association of Late Deafened Adults (ALDA): If you quite suddenly lost all (or almost all) your hearing as an adult, you might also want to join with others like yourself and become a member of the Association of Late Deafened Adults. There are 11 chapters scattered around the country at this time. If you want to phone them, their phone number is (866) 402-2532 (V/TTY).

Alexander Graham Bell Association for the Deaf and Hard of Hearing (AGB): If you are the parent of a hard of hearing child, you may find that the Alexander Graham Bell Association is the organization that best fits your needs. AGB has chapters in 30 states. Find the nearest chapter.  If you want to phone them, their phone number is (202) 337-5220.

Even if there are no chapters near you, you can join any of these helpful organizations as a member at large and receive their helpful publications.

On-line Groups

The following on-line groups "meet" via emails sent to everyone in the group. When they are active, you can receive a lot of emails.

SayWhat Club (SWC): For on-line support, encouragement and friendship you can’t beat the SayWhat Club. (I met my wife there. Several other people have done the same.) The SWC has about 11 different sub-groups so you’ll likely find one that is just what you need. For example, if you are interested in learning more about cochlear implants, the SWC has an excellent list dedicated to information and support for cochlear implant users and prospective users. For further information or to join, click here.

Beyond Hearing (BH): If you have more technical questions about your hearing loss, hearing aids or assistive devices, the people hanging out on Beyond Hearing will be more than happy to help you. Post your questions, and you will receive replies from knowledgeable people, or just share your experiences. To join BH click here and then click on "Join this group." The Beyond Hearing website has a wealth of information. So does the Beyond Hearing archives once you are a member.

BH News: If it is keeping up with the latest technological advancements and other news relating to hearing loss, BH News can’t be beat. You can also post items of interest or ask questions on this list. To join BH News click here then click on "Join this group." There is a wealth of information in the BH News archives once you are a member.

In addition to the above, there are numerous other special interest "email lists," "chat rooms," "bulletin boards" and "news groups" you can join. For example, I "own" a special interest list for people with Large (Enlarged) Vestibular Aqueduct Syndrome (LVAS) which you can join. I also "own" Ototoxic Drugs, a list for people who have damaged their ears from using ototoxic drugs, which you can also join.

The following four organizations deserve special mention if you have one of these ear-related conditions.

The American Tinnitus Association (ATA) provides information, referrals and support for people who experience ringing in their ears and other head noises.

The EAR Foundation administers the Meniere’s Network, a support group for people suffering from Meniere’s disease. They also have a number of articles on various aspects of hearing loss.

The Hyperacusis Network is a support group for people who have a reduced tolerance to sound (e.g. hyperacusis and recruitment).

The Vestibular Disorders Association (VEDA) provides information and support for people with balance disorders, vertigo and related ear problems. Their website also lists a number of support groups around the country.

3.  Information on Hearing Loss (and Other Ear Conditions)

In order to live a successful life in spite of your hearing loss, you need to learn more about hearing loss and how to successfully cope with it. There is a wealth of such information freely available to you on the Internet. In addition, there are a number of good books on this subject.

The following sources are broken down into three sections—for "Adults," for "Parents" and for "Children." Information of general interest to all three groups is located in the "Adults" section.

Adults

Articles on Hearing Loss

Dr. Ross on Hearing Loss: Dr. Mark Ross, one of the eminent authorities on hearing loss, has written 62+ easy-to-read articles on various aspects of hearing loss and hearing aids that contain a wealth of information for you.

The Center for Hearing Loss Help: Neil Bauman, Ph.D. has written 38+ in-depth, yet easy-to-read informational articles related to hearing loss and other ear problems including how to successfully live with your hearing loss. While there, you can also subscribe to the free e-zine "Hearing Loss Help."

Glossary of Hearing Loss Terms: If you have trouble understanding the jargon and acronyms used in the hearing loss field, turn to this reasonably comprehensive glossary of various hearing loss terms and acronyms.

The Better Hearing Institute has a number of articles on various topics related to ears and hearing loss and lists of resources on their website.

The National Institute on Deafness and Other Communication Disorders (NIDCD) provides a wealth of on-line information and has 31 short (3 to 5 page) reports on various aspects of hearing loss that you can order for free. You can download 27 of these articles here.  If you want to phone them, their phone numbers are (800) 241-1044 (V) and (800) 241-1055 (TTY).

3D Ear: You can rotate this 3D model of the ear in any direction and zoom it to any size. If you right click on a part, the frame on the left describes the part you are seeing.

Ear Animations & Sound Simulations: The Department of Physiology at the University of Wisconsin—Madison Medical School has put together a series of animations of various ear processes (such as the working of the bones in the middle ear), and simulations of what speech and music sounds like for people with normal hearing, and for those with moderate and severe hearing losses. (For the latter, scroll to near the bottom of the page). Click here to see these animations here.

Deafness Research Foundation (DRF): The DRF hosts the homepage of Hearing Health magazine. Each issue they offer two on-line exclusive articles. Many more are available in their archives.

Entertainment

Captioned movies showing in theatres near you: Fomdi is a neat little cartoon character that finds captioned movies near your location.

Captioned Live Theatre near you: C2 (Caption Coalition) Inc. has a website where you can find all the upcoming captioned live performances in theatres.

Described and Captioned Media Program (DCMP): If you are hard of hearing or deaf, you can borrow (free—including free postage) captioned videos and DVDs to watch in the privacy of your own home. You can also watch some of them over the Internet on your own computer. Incidentally, their catalogue includes a six video set of speechreading practice videos called Read My Lips (Catalogue numbers 9365 through 9370) if you want to improve your speechreading skills.

Movie—Spotlight On Hearing Loss: The Better Hearing Institute has a copy of the nine and a half minute PBS documentary, "Spotlight on Hearing Loss," available for you to view on-line or download.

Educational Videos on Cochlear Implants: Advanced Bionics has four videos you can watch on-line that will answer many of your questions about cochlear implants. One nice feature is that these videos are all open captioned so if you can’t hear the words, you still get the complete message. Click here to view any of the four below videos.

• Hearing Your Life: 28 minutes. Follow Cassie an adult who lost her hearing as she gets a cochlear implant.
   
• Cecilia’s Story (Introduction): 7 minutes (you can order the full 45 minute video) Follow Cecilia from an infant to 8 years of age as she blossoms with her cochlear implant.
   
• How A Cochlear Implant Works: 1 minute. This short animated introduction shows how a cochlear implant works.
   
• Journey To Sound: 31 minutes. This video describes what you can expect at your initial cochlear implant programming session.
   

Books free

Facing the Challenge: A Survivor’s Manual for Hard of Hearing People compiled by the Hearing Loss Association of Oregon. 2nd. 2002. 73 pages. This book gives a brief, but excellent, overview of the coping skills you need to successfully live with your hearing loss. In addition, it briefly covers the essential things you need to know about hearing aids and assistive devices. Download your free copy here. (If you want a printed and bound copy, send $3.00 to Hearing Loss Association of Oregon, P.O. Box 22501, Eugene, OR 97402.)

Canadian Consumer Guide to Hearing Loss & Hearing Aids by the Canadian Hearing Instrument practitioners Society. 32 pages. This guide gives a brief overview of hearing loss, the hearing testing process, the different kinds and styles of hearing aids and why you might need one or the other. It concludes with a list of Canadian resources including where to get financial assistance in each of the provinces. Download your free copy here.

Your Guide to Better Hearing 32 pages. This Better Hearing Institute guide gives an excellent overview of how loss of hearing affects us, hearing aid features and how they help us, and concludes with a section on childhood hearing loss. Download your free copy here. If you want to phone them, their phone number is (703) 684-3391.

Your Guide to Hearing Aids 20 pages. Before you get hearing aids, you need to read this short book put out by the Better Hearing Institute. It will help you understand hearing aids, how you can get the most out of them, and most importantly, how having the right expectations is your key to success. Download your free copy here. If you want to phone them, their phone number is (703) 684-3391.

Senior Ears is an excellent 40-page informational booklet (they call it a magazine) giving a broad overview on hearing loss, how it affects seniors and what they need to do about it. This book is almost free—$1.00 for the email version; $2.00 for the printed version. Click here and then scroll to near the bottom of the page to order it. If you want to phone the Ear Foundation, their phone number is (800) 545-4327 (V/TTY).

Books for Purchase

You can purchase all of the below books from Amazon.com. Some are new. Some have been around for a few years. If cost is a concern, note that Amazon often sells their books for less than the prices given below. Furthermore, often you can also purchase these books in used condition from Amazon at substantial savings. In fact, at times some books go for as little as $0.01, although $3.00 to $6.00 per book is more typical.

Help! I’m Losing My Hearing—What Do I Do Now: A Basic Guide to Hearing Loss (and Other Ear Problems) by Neil Bauman, Ph.D. 2005. 118 pages. ISBN: 0971094349 (P) $18.95. If you have lost some hearing and don’t know what to do next, this is the book for you. This easy-to-read book leads you through the hearing loss quagmire from understanding your ears and hearing loss to how it affects you emotionally, to getting your hearing tested and ends with numerous tips to help you successfully live with your hearing loss. Order it from Amazon now.

Coping with Hearing Loss: Plain Talk for Adults About Losing Your Hearing 2nd Ed. by Susan Rezen and Carl Hausman. 2000. 287 pages. ISBN: 1569801657 (H) $19.95. This easy-to-read, yet comprehensive book focuses on helping you successfully deal with hearing loss in your family. It is especially good in explaining how hearing loss affects you and those around you. There are also excellent sections on speechreading and on standing up for your hearing needs. Order it from Amazon now.

Living with Hearing Loss by Marcia Dugan. 2002. 177 pages. ISBN: 156368134X (P) $11.95. This is an easy-to-read beginner’s primer on living with hearing loss. It briefly touches on all the subjects of which you should be aware in order to successfully live with your hearing loss. Order it from Amazon now.

How Hearing Loss Impacts Relationships: Motivating Your Loved One by Richard Carmen, Au.D. 2005. 109 pages. ISBN: 0966182634 (P) $15.05. This easy-to-read, yet profoundly practical, book is a must if your hard of hearing spouse refuses to do anything about his hearing loss (except make you repeat everything a million times). It explains what you need to do, and just as importantly, what you mustn’t do, in order to motivate your spouse to do something about his hearing loss. Order it from Amazon now.

Missing Words: The Family Handbook on Adult Hearing Loss by Kay Thomsett & Eve Nickerson. 1993. 242 pages. ISBN: 1563680238 (H) $29.95. Missing Words is the touching story of Eve Nickerson losing her hearing. One great feature of this book is that Eve shares many of the effective coping strategies she learned to use. This book is for you if you have trouble speaking up for yourself when you can’t hear, or if you don’t always practice effective coping strategies. Follow Eve as she gets into all sorts of hearing predicaments. Carefully notice how she learns to effectively cope in these difficult listening situations, then copy her and do the same. Part II is a fascinating account of how our brains and minds work to try to make sense of our faulty and fragmented hearing. Part III then switches back to explaining many coping skills and why/how they help a person effectively communicate with hard of hearing people. Order it from Amazon now.

The Consumer Handbook on Hearing Loss and Hearing Aids: A Bridge to Healing edited by Richard Carmen, Au.D. 2004. 250 pages. ISBN: 0966182626 (H) $24.05; ISBN 0966182618 (P) $18.05. This book is really a collection of eleven reasonably in-depth essays relating to understanding hearing loss and how hearing aids fit into the picture. It delves into the psychology of why people refuse to wear hearing aids, then explains how hearing aids positively improve the quality of your life. Furthermore, it discusses the need for realistic expectations with your new hearing aids, gives tips on how to keep them working properly and shows you how to improve your hearing and listening skills. Order it from Amazon now.

Overcoming Hearing Aid Fears: The Road to Better Hearing by John Burkey. 2003. 175 pages. ISBN: 0813533104 (P) $17.95. If you are apprehensive about the whole business of getting and wearing hearing aids, this is the book for you. Throughout this book, the author carefully responds to your many fears and doubts regarding hearing aids. After he lays these fears and doubts to rest, the author then explains the many benefits to both you and your family from wearing hearing aids. Order it from Amazon now.

Hearing Better: Understanding Your Hearing and Ear Care Options by John Burkey. 1999. 161 pages. ISBN: 1581128231 (P) $19.95. This very readable, although slightly dated, book explains hearing loss and related ear conditions. The author makes a strong plea for using amplification (hearing aids and assistive listening devices) to correct the hearing loss. Order it from Amazon now.

Listen With the Heart: Relationships and Hearing Loss by Michael Harvey, Ph.D. 2001. 198 pages. ISBN: 1581210191 (P) $19.95. Listen with the Heart comprises 10 stories of counseling sessions where Dr. Harvey delves into the complexities of how hearing loss affects our communication, self-identity and interpersonal relationships. He further explains how hearing loss is only one small part of our complex personalities. Therefore, we must not blame all our problems on our lack of hearing. Order it from Amazon now.

A Quiet World: Living with Hearing Loss by David Myers Ph.D. 2000. 224 pages. ISBN: 0300084390 (H) $23.00. As Dave Myers lost more and more of his hearing, he kept a journal of his experiences. You will likely identify with him in his denial and slowly growing acceptance of the reality of his hearing loss. Along the way he gives good teaching on hearing loss. Order it from Amazon now.

Hear Again: Back to Life with a Cochlear Implant by Arlene Romoff. 1999. 254 pages. ISBN: 0967784301 (P) $15.95. This book details Arlene’s journey from the day she was hooked up to her new cochlear implant to her one year evaluation. Each day you will share her joys (and frustrations) as she begins to hear again after 27 years of increasing deafness. Along the way, you will pick up some of the neat coping strategies she used to use. As you read of her struggles to hear, you will begin to appreciate just how hard a hard of hearing person works in order to communicate. Thus, you will share in her relief as she finds communication ever so much easier with the cochlear implant. This book builds hope in you--hope that when your hearing loss is bad enough, a cochlear implant will bring you the same wonderful results she has experienced. Order it from Amazon now.

Mayo Clinic on Hearing: Strategies for Managing Hearing Loss, Dizziness and Other Ear Problems by Wayne Olsen, Ph.D., Editor. 2003. 194 pages. ISBN: 1893005291 (P) $16.95. If you want a reasonably comprehensive book, yet one written in simple layman’s terms on understanding common hearing problems, and managing your hearing loss, this is a book I’d recommend. It also has very good sections on tinnitus and balance problems. Order it from Amazon now.

When Your Ears Ring! Cope With Your Tinnitus—Here’s How by Neil Bauman, Ph.D. 4th Ed. 2005. 118 pages. ISBN: 0971094330 (P) $18.95. If your ears ring, buzz, chirp, hiss or roar, you know just how annoying tinnitus can be. When Your Ears Ring explains what tinnitus is, its many causes and more importantly, gives 18 different kinds of treatments that my help you bring your tinnitus under control. Order it from Amazon now.

Phantom Voices, Ethereal Music & Other Spooky Sounds: Musical Ear Syndrome by Neil Bauman, Ph.D. 2005. 164 pages. ISBN: 0971094322 (P) $22.49. This fascinating book reveals the mysteries of the phantom music and other sounds many hard of hearing people secretly experience but seldom talk about. The final chapter explains eight things you can do to help bring these phantom sounds under control. Order it from Amazon now.

Ototoxic Drugs Exposed—The Shocking Truth About Prescription Drugs and Other Chemicals That Can (and Do) Damage Our Ears by Neil Bauman, Ph.D. 2nd Ed. 2003. 634 pages. ISBN: 0971094314 (P) $39.99. Few people realize that many drugs can slowly and insidiously rob them of their hearing, cause their ears to ring and/or leave them with various balance problems. More ototoxic drugs can do the same thing almost overnight. This book explains the kinds of damage drugs can cause to your ears, reveals many of the risk factors that can make you more susceptible to their ravages and lists the ototoxic side effects caused by each drug. Order it from Amazon now.

Parents

Books free

My Baby’s Hearing leads you step by step through the things you need to know if your child has a hearing loss. Download it here. One of the neat things is that it has recordings of normal, mild, moderate and severe hearing losses so you have an idea what the difference is. You can hear these recordings here.

MD Keys to Communication by the Hearing and Speech Agency of Baltimore is essentially a manual for parents of hard of hearing children. It leads you through the many decisions you need to make to get the best for your child. You can either get this program in a three ring binder by contacting the agency directly, or you can download this same information here.

A Guide to Your Child’s Hearing This 12-page guide by the Better Hearing Institute will help you understand hearing loss in your children, and the steps you should take in order to get them the help they need. Read or download it here.

Hearing Makes Friends: Audiologic Guide by Siemens Hearing Instruments is a 19-page guide that explains in plain language about hearing loss, hearing testing, hearing aids and FM systems that couple to hearing aids. Read or download it here.

Hearing Makes Friends: Hearing Instrument Guide by Siemens Hearing Instruments is a 16-page guide that explains how to take care of your child’s hearing aids, how to troubleshoot them when things go wrong and how to help your child want to wear their hearing aids. Read or download it here.

Oticon has a number of short books that you can read or download here. (Click on the appropriate download button to read, or right click to download and save.) These include a 40-page Parents Guide that explains hearing loss in your child; a 32-page Family Notebook where you record your observations relating to your child’s hearing loss; and All About FM (28 pages) that explains why hearing aids are often not enough and how using an FM system with hearing aids is such a tremendous help to hard of hearing kids.

Although not a book, I’d like to specifically recommend the Listen-Up Website as it is a wonderful source of free information for parents and teachers of hard of hearing kids. Kay designed it to be a one-stop place for information, answers, help, ideas and resources for things related to hearing loss.

Books for purchase

Your Child’s Hearing Loss: What Parents Need to Know by Debby Waldman. 2005. 216 pages. ISBN: 0399530770 (P) $15.95. When her daughter was diagnosed with a hearing loss, Debby was devastated. Slowly she learned about hearing loss and what she as a parent needed to know. She shares her story (and the stories of a number of other parents and their hard of hearing children) as she explains the practical issues of raising a hard of hearing child. The book ends with the success stories of some young adults who have successfully coped with their hearing losses so that you might have hope and see that hearing loss isn’t the "end of the world." If you are a parent new to hearing loss, this book is for you. Order it from Amazon now.

Living Well with Hearing Loss: A Guide for the Hearing-Impaired and Their Families by Debbie Huning. 1992. 179 pages. ISBN: 0471545228 (P) $12.95. If you have a hard of hearing child in school, you may find this book a real eye-opener and life-saver. It has a wonderful chapter about hearing loss in the classroom that you need to take to heart. As well, you will find a wealth of great coping strategies throughout this book. Order it from Amazon now.

Children

Books free

Sam’s Young Ears is the EAR Foundation's story of Samantha, who was born with a hearing loss. Follow her as she goes to kindergarten and first grade in school. Read or download this 23 page story/picture book here.

The Adventures of Bionic Buddy by Advanced Bionics is the story of a young monkey whose hearing became so poor that he received a cochlear implant so he could hear again Either watch the cartoon "The Adventures of Bionic Buddy Online Cartoon" on-line (10 minutes), or print out the 28-page Bionic Buddy children’s story and coloring book. You can also order the printed or CD/DVD versions from Advanced Bionics for free.

HearBear Discovers a World of Sound by David Sawyer. This 26-page book, put out by Siemens, is the story of little hard of hearing HearBear. He goes to the doctor and then the audiologist where he is tested and fitted with hearing aids. He relates how his life is so different now that he can hear. Read or print out this full-color story book here.

Oliver Gets Hearing Aids is Phonak’s delightful story of Oliver the little elephant who gets hearing aids so he can hear better. Read or download this 23 page full-color book here.

Oliver Gets FM is Phonak’s second book in the Oliver series. This beautifully-illustrated book tells how Oliver uses an FM assistive listening system to help him hear better in both in school and at home. Read or download this 23 page full-color book here. (There are other "Oliver" products at the Oliver program page.)

Having Hearing Aids is written and illustrated by 8-year-old Peter Augustine. This full-color story book, put out by Oticon, tells how Peter couldn’t hear well, so his mom took him to the doctor where he had his hearing checked. He shows us through his 8-year-old eyes how his hearing aids and FM system help him hear better at home and at school. To read or download this book, click here, then click on the "Having Hearing Aids" download link.

Books for purchase

There are many books for children that are related to hearing loss. The trick is finding them. Fortunately, the Listen-Up Website probably has the most complete annotated list anywhere. They have 76 fiction books, 30 non-fiction books, 67 books on sign language and 27 videos for children. Many of these titles are about deaf kids who use signing to communicate, but there are a number of them starring hard of hearing kids that wear hearing aids to help them communicate better. Check out these books here.

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There are many, many other good books, resources and websites for hard of hearing people that I have not mentioned here due to lack of space. This is just a sampling of some of what is available.
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The above article (somewhat edited) was published in the Winter 2007 edition of Hearing Health magazine. It has since been added to.