FACING THE CHALLENGE
A Survivor’s Manual for Hard of Hearing People
Compiled by Hearing Loss Association of Oregon
Statistics and Information on Hearing Loss
The Emotional Side of Hearing Loss
Confronting your Hearing Loss
General Coping Skills
Handling Difficult Situations
Hearing Aids/Cochlear Implants and You
You are Not Alone
This little booklet is filled with wisdom, humor, understanding and love. We hope it makes your hearing loss easier to handle and promotes understanding with your family and friends.
The front cover depicts a mountain climber, struggling to reach his goal and giving all he’s got to reach the top, and when he’s climbed this mountain, he’ll find another to climb because of the challenge of accomplishing a difficult task and the view as he climbs is breathtaking. We hard of hearing people are survivors. Each day we climb a mountain of emotions —depression, bewilderment, sadness, frustration, anger and grief and the next day we climb it all over again—day after day. Some days the climb is doable and others times it is overpowering but we keep climbing because the climb matters and develops strength and character. We survive because we have the essential tools for survival – knowledge and determination. The challenge is there every day and the trip is indeed breathtaking.
|“All of us face adversity at some point in our lives. Dwelling on the negative, however, ’though seductive, is an exit into an all-consuming trap of self-pity. Focusing on more positive aspects of your life and on the pluses of a seemingly bad situation will let you enjoy life more. A way to focus on the positive is to refuse to be a victim; in other words, to take an active stance. Although it is normal to grieve and feel anger in a bad situation, working to solve your problems is ultimately more productive and satisfying.”– Kristen Frohnmayer|
“We (late) deafened…have two lives;
the years with ears
And the years without. We pass from
One to the other over a bridge of sighs or on
Stepping stones of self-determination.”
STATISTICS AND INFORMATION ON HEARING LOSS
DID YOU KNOW…
• 1 out of 10 people in the U.S. has a hearing loss.
• By age 50, 1 in 8 people have a hearing loss.
• By age 65, one out of 3 people has a hearing loss.
• Hearing loss ranks with arthritis, high blood pressure and heart disease as one of the most common physical conditions.
• There are 43 million Americans with disabilities – of those, 28 million have a hearing loss.
• It is estimated that 30 school children per 1000 have a hearing loss.
• One out of 12 thirty-year-olds already has a hearing loss.
• More than 1/3 of all hearing loss is attributable to noise.
• There are more 40-year-olds with a hearing loss than 50-year- olds with a hearing loss.
• Most people will deny having a hearing loss for an average of seven years before getting help.
DO YOU HAVE A HEARING LOSS?
You may have a hearing loss if you often ask people to repeat what they’ve said, give inappropriate responses, find that you can’t hear in restaurants and other noisy situations, turn up the volume on your radio and TV, or find it harder and harder to understand telephone conversations. Similarly, you may have a hearing loss if you don’t hear your alarm clock, frequently mispronounce words, or don’t hear or understand people who are not facing you. You may feel embarrassed or avoid meeting new people because you may not know what they are saying, or feel frustrated because people are mumbling or not speaking up.
Even a mild hearing loss causes communication problems, making conversation difficult. You may experience headaches, fatigue or irritability and isolate yourself from social situations. Not only will you be frustrated, but those around you may be angry or frustrated at trying to make you understand. Your ability to deal with your loss won’t get better by itself – You must take action.
|The happiest excitement in life is to be convinced that one is fighting for all one is worth on behalf of some clearly seen and deeply felt good.– Ruth Benedict|
CAUSES AND RELATED PROBLEMS OF HEARING LOSS
Hereditary Hearing Loss: Hereditary Hearing Loss is passed down from parents to their children and may be inherited from one or both parents who may or may not have a loss of hearing themselves. There are about 200 different types of genetic deafness.
MEDICAL CONDITIONS RELATED TO HEARING LOSS
Acoustic Neuroma: A non-cancerous, but dangerous, tumor developing on nerve strands that are very close to the inner ear. The size of the tumor can create pressure on other organs and can impact the ability to hear, leading to more profound hearing loss. There are different types of surgeries to remove this type of tumor, but all usually result in substantial hearing loss or deafness in the impacted ear.
Autoimmune Inner Ear Disease (AIIED) or Autoimmune Sensorineural Hearing Loss (ASHL): A fluctuating hearing loss, usually on both sides, which is the result of an autoimmune disease, such as rheumatoid arthritis, lupus, or polyarthritis. The patient’s own immune system produces antibodies, which destroy inner ear cells and structures, leading to hearing loss. Can also be referred to as Immune-Mediated Sensorineural Hearing Loss (SNHL).
Balance Difficulties: If your inner ear or the brain are damaged by disease or injury, the vestibular system that helps control balance and eye movements may be impacted. The most commonly diagnosed vestibular disorders include Meniere’s disease, infections of the inner ear, injury caused by head blows, endolymphatic hydrops and perilymph fistula. Other disorders include acoustic neuromas and allergic or autoimmune disorders. There are many different symptoms and many degrees of severity.
Hyperacusis: A painful sensitivity to sound, often a result of excessive noise, head injury, a side effect of some medication or head surgery. Although the person has normal hearing, the tolerance level for some hearing frequencies (low or high) is reduced. See “Recruitment”.
Meniere’s Disease: A broad term covering a variety of symptoms caused by excessive fluid in the inner ear which impact the balance and sometimes also the hearing system. The cause of Meniere’s is not known, but is thought to involve viruses, allergies, circulation problems, or physical trauma. It can affect hearing in one or both ears.
Nerve Deafness: See “Sensorineural Hearing Loss”
Otitis Media (OM): Infection of the middle ear, which causes pressure on the eardrum due to fluid buildup. This causes temporary hearing loss. At times, the pressure builds up sufficiently to rupture the ear drum.Otosclerosis: Caused by excessive bone-like tissue growing in the middle ear which prevents sound waves from entering the inner ear thus causing hearing loss. May be corrected with surgery.
Ototoxic Drugs: These drugs have the potential to damage the inner ear structure and result in temporary or permanent hearing loss. The degree of loss and the possibility for recovery depend on the medication, as well as dosage and duration of use. Existing Sensorineural Hearing Loss (see below) can be aggravated by the use of ototoxic drugs. Ototoxic drugs include antibiotics such as streptomycin, erythromycin, and vancomycin when given intravenously; some chemotherapeutic agents such as cisplatin, nitrogen mustard, and vincristine.
Presbycusis: This hearing loss is caused by the decline of working hair cells in the inner ear due to aging, exposure to loud noise or a genetic reason.
Recruitment: Involves hyperacusis, a painful sensitivity to sound (see above), even though a hearing loss is present. Sound can be distorted and uncomfortable.
Sensorineural Hearing Loss (Nerve Deafness): This most common form of hearing impairment is due to an abnormality of the inner ear, the auditory nerve, or both.
Tinnitus: With tinnitus one hears sounds that aren’t present. People experience it as head noises or ringing in the ears. It may come and go or remain constant, and it may vary in pitch. Tinnitus has many causes and is often associated with hearing loss. Several forms of treatment are currently available.
NOISE INDUCED HEARING LOSS
Repeated exposure to noise has caused at least 10 million Americans to lose part or all of their hearing. Such environmentally produced hearing loss has no medical or surgical treatment except for cochlear implants for the severely or profoundly impaired. But hearing aids and other assistive listening devices can be very helpful. We live in a noisy world. Note: Exposure to noise at hazardous levels may not result in an immediate loss; the loss (damage) is cumulative across time.
|When I went to the DMV to replace my lost driver’s license, I was asked for ID and told to stand on the red line.“What did you say?” I asked.“Stand with your toes on the red line. I’ll be back in a few minutes.”
When he turned around I was standing with my face right on the camera lens. “What are you doing?” he asked.
I replied, “You told me to stand with my nose on the red light.
DECIBEL RATINGS/ HAZARDOUS TIME EXPOSURES OF COMMON NOISE
EXAMPLES (source: Am. Academy of Otolaryngology)
0 — Softest sound audible to the human ear
30 — Quiet library, soft whisper
40 — Living room, quiet office, bedroom away from traffic
50 — Light traffic at a distance, refrigerator, gentle breeze
60 — Air conditioner at 20 feet, conversation, sewing machine
70 — Busy traffic, noisy restaurant. Constant sound at this level may begin to harm your hearing.
THE HAZARDOUS ZONE:
80 — Subway, heavy city traffic, alarm clock at two feet, factory noise These noises are dangerous if you are exposed to them for more than eight hours.
90 — Truck traffic, noisy home appliances, shop tools, lawn mower As loudness increases, the “safe” time exposure decreases. Damage can occur in LESS than eight hours.
100 — Chain saw, stereo headphones, pneumatic drill Even two hours of exposure can be dangerous at 100 dB; and with each 5dB increase, the “safe time” is cut in half.
120 — Rock band concert in front of speakers, sandblasting, thunderclap The danger is immediate: at 120 dB exposure can injure your ears.
140 — Gunshot blast, jet plane Any length of exposure time is dangerous; noise at 140dB may cause actual pain in the ear.
180 — Rocket launching pad Without ear protection, noise at this level causes irreversible damage. Hearing loss is inevitable.
UNDERSTANDING YOUR AUDIOGRAM
Bewildered by your audiogram? Do you wonder why some people express hearing loss in percentages, while others express them in decibels (dB)? What is a decibel anyway? For the answers to these and other questions, visit http://www.earinfo.com/howread5.html.
The audiogram below shows two different scales to represent sound. One scale represents sound frequency or pitch measured in Hertz, and is the horizontal dimension. The vertical scale represents loudness measured in decibels (dB), and is recorded in 10 dB increments from 0 (which is the average of the faintest sound heard) to 110 dB, the pain threshold for the normal ear. Letters show the Hz and dB levels where individual speech sounds are heard.
1. Common sounds are shown to illustrate these two dimensions.
2. Audiologists use this chart (Audiogram) to map out the softest level at which you can hear each frequency.
A person can lose an average of 1 dB a year in sensitivity due to our noisy world. Hearing loss is generally rated from minimal to profound
While we tend to think that the only factor in hearing loss is loudness, there are actually two factors involved: loudness and clarity. Loss generally occurs first in the high pitch, quiet range. A mild loss can cause one to miss 25-40% of speech, depending on the noise level of the surroundings and distance from the speaker. When there is background noise it becomes difficult to hear well, the speech may be audible but may not be understandable.
DEGREES OF HEARING LOSS:
Mild (25 to 40 dB): Faint or distant speech may be difficult. Lip reading can be helpful .
Moderate (41 to 55 dB): Conversational speech can be understood at a distance of three to five feet; as much as 50% of discussions may be missed if the voices are faint or not in line of vision.
Moderately Severe (56 to 70 dB): Speech must be loud in order to be understood; group discussions will be difficult to follow.
Severe (71 to 90 dB): Voices may be heard from a distance of about 1 foot from the ear.
Profound (more than 91 dB): Loud sounds may be heard, but vibrations will be felt more than tones heard. Vision rather than hearing, is the primary avenue for communication.
HOW THE EAR PERCEIVES SOUND
In order for you to hear, sound must pass through:
• the outer ear – the visible outer portion of the ear and ear canal
• the middle ear – the eardrum and three tiny bones
• the inner ear – the fluid-filled, snail-shaped cochlea containing thousands of tiny hair cells
The outer ear collects the sounds and directs it through the ear canal to the eardrum in the middle ear. The sound waves strike the eardrum causing it to vibrate and creating a chain reaction in the three tiny bones of the middle ear. The motion of these bones causes movement of the fluid within the snail-shaped cochlea. As the fluid moves, the tiny hair cells lining the cochlea move back and forth and generate an electrical current, which stimulates the hearing nerve to carry the signal to the brain. Here it is interpreted as sound.
Damaged hair cells cannot send electrical impulses to the auditory nerve, and the message to the brain becomes unclear, or may not be sent at all. Hearing aids often may help those who still have some healthy hair cells but for those with a severe to profound hearing loss who are unable to understand speech with conventional hearing aids, a cochlear implant may help. The cochlear implant bypasses damaged parts of the ear and stimulates the hearing nerve, allowing those who are profoundly hearing impaired to receive sound.
WHAT ARE THE RESULTS OF A HEARING LOSS?
Helen Keller struggled with the challenges of being both blind and deaf. When asked about the difficulties of both and which was a more serious problem, she stated that when you’re blind you lose touch with things, but when you’re deaf you lose touch with people. Her hearing loss caused a separation from people because it was difficult to not only hear what people were saying but perceive what they were thinking and feeling as well.
Even a mild hearing loss can cause communication problems as we go about our daily lives. A hearing loss makes it more difficult to learn new vocabulary and new language concepts and is a particularly difficult loss for children. A hearing loss makes it difficult to participate in meetings, hear on the phone and communicate with those with whom we work or live. It can cause stress and friction among family and friends, especially when the loss is undetected or untreated. It places a hardship on everyone. Many studies have been made regarding the impact of hearing loss. To quote a few:
“The result (of acquired deafness) is limbo, a nowhere land, that few can feel as acutely as a recently deafened person who is not only suddenly ‘different’ but invisibly handicapped and prevented from easily communicating this feeling to others, deaf or hearing.” (Hunter, 1978 as cited in the SHHH Mental Health Committee Brochure)
“The natural environment of the progressively hard of hearing is that of the hearing world. It is the threat of becoming cut off from this familiar environment that produces all the reactions common to the emotion of fear. It is, for example, the fear of failure in career and the subsequent effects on the family. The fear of meeting new people. The fear of losing friends. The fear of being thought stupid or being misunderstood, and worst of all, the fear of becoming isolated. These are a few of the contributing facts which can lead to a possible withdrawal from society by the progressively deaf person.” (Cornforth, Woods, 1972, as cited in the SHHH Mental Health Committee Brochure)
DON’T HIDE YOUR HEARING LOSS. THE TRUTH MAY BE BETTER THAN WHAT THEY’RE THINKING!
• People may think you’re stupid.
• People may think you’re unfriendly.
• People may think you lack social grace.
• People may think you talk too much.
• People may think you’re crazy.
• People may think you’re insensitive.
• People may think you’re incompetent.
• People may think you’re not interested.
ONCE A HEARING LOSS IS DETECTED, MUCH CAN BE DONE. READ ON!
|…listen with your eyes and your heart will hear. —Tara DennisAnyone can carry his burden, however hard, until nightfall.
Anyone can do his work, however hard, one day.
Anyone can live sweetly, patiently, lovingly, until the sun goes down.
And this is all that life really is.
—Robert Lewis Stevenson
THE EMOTIONAL SIDE OF HEARING LOSS
FRUSTRATIONS AND OTHER EMOTIONS
by Karen Swezey, SHHH
Hearing loss is difficult. We are constantly put in situations in which communication is difficult and we naturally become frustrated. We need to realize that the struggle to hear takes its toll. Each time we are faced with a situation that is difficult for us, we may feel any number of emotions: humiliation, anger, frustration, sadness, discouragement, or something else. Even though we may be assertive and up front about our hearing loss, these emotions remain. We need to recognize how much it takes out of us to be out there day in and day out, admitting our loss, making our communication needs known and facing obstacles. It isn’t easy!
When we ask someone to repeat what was said and they roll their eyes or their tone of voice tells us we are bothering them, this is like being hit in the stomach, only it hits us in our self-esteem. When we want to attend an event and we request an assistive hearing device or computer assisted communication, and the person in charge decides what we have requested is not “appropriate” and that something else will be provided instead without asking our opinion — this is very emotionally difficult.
Many things affect our ability to hear. Other people can’t begin to understand that if they refuse to listen to us or think they can tell us what we can or cannot hear, we feel devalued. When we ask people in meetings to take their hands down from their faces so we can lip read, or to have only one person talk at a time – and they remember for only a few minutes or until the next meeting—we need to deal with our feelings of frustration and discouragement about that.
Some days we are stronger than we are on others. We have the courage and strength to keep trying until the situation is straightened out. Other days we may want to simply crawl into bed and pull those covers up over our head. Those are the days when we need to take care of ourselves and acknowledge that being assertive takes energy and sometimes takes away from other parts of our life.
We need to surround ourselves with people who understand, people with whom we can share our experiences. People who will help us remember that life is good and we are worth it. We need people who can help us by listening and encouraging us.
And then there are simply some people in the world who “just don’t get it”…yet. And they won’t unless we continue to try to teach them. The fact is that hearing loss is not an easily understood condition. We can learn how best to cope with it…and then teach the world. Perhaps we simply haven’t found the right words to explain it…yet.
Courage doesn’t always roar—sometimes it says quietly, “I will try again tomorrow.”
by Mitch Turbin, SHHH
Hearing loss is emotionally painful for many reasons. Our need to communicate is so constant, the situations and environments in which we need to hear are so varied, the support of others is so uneven, and technology, alas, can often break down so there is little respite from our loss. Thus, our hopes and expectations can be frustrated and we experience a myriad of emotions.
How do we deal with those times, and those feelings? Unfortunately, just as the behavioral skills for coping with hearing loss are not automatic, so the skills for dealing with these emotions are not instinctive, and need to be learned. The process of dealing with our lost hearing is one of “going through” the natural stages of grieving. Mourning constitutes a deliberate set of behaviors and thoughts by which we can better move through those feelings of grief toward a will to adjust to the challenges of life.
Denial appears as the first stage of grief and is the result of the deep fear that hearing loss evokes in us. The mourning that we must do here is to work toward acknowledging that fear, and know that all human life fears the loss of health and happiness. We are not as alone as we think.
Anger occurs when we burst through the fear and demand of life that somehow, anyhow, we deserve happiness. The great Beethoven, in his response to his growing deafness, showed us to do the mourning that moves us through anger. He presented his anger to the whole world, but he did it in beautiful ways. We can’t all be geniuses, but we can all find constructive ways to assertively voice our commitment to life.
Bargaining is the stage in which we acknowledge our disability in a halfhearted way, really still hiding, still in fear. We may, for example, buy and wear a hearing aid, but we hide it, and we don’t really help others communicate with us. Here we need to intelligently analyze our situation, and be sure that we aren’t doing ourselves a disservice, moving a step backward for every step forward.
Depression may happen when we finally stop hiding, and allow ourselves to experience the sadness of our loss. Sadness is natural, and is a healthy response. Mourning nurtures, even cherishes this sadness – when you don’t fight it. It will gradually lessen on its own, allowing you to begin acting effectively again.
Acceptance and Adjustment come when we consciously work to minimize the handicapping effects of the hearing impairment, and go forward doing what we must. After all, everyone is flawed, everyone is mortal, but life goes on.
|Believe, when you are most unhappy, that there is something for you to do in the world. So long as you can sweeten another’s pain, life is not in vain.—Helen KellerHe whose vision is defective always sees less… but
He who is hard of hearing always hears something extra.
CONFRONTING YOUR HEARING LOSS
Start Now! Delays are costly! Waiting can make it difficult to regain some of the speech discrimination you have lost as your hearing ability has declined. Waiting poses a threat to your job security, and makes communication and relationships much more difficult.
See Your Primary Care Physician who can give you a basic exam to determine if there are any conditions causing your hearing loss which can be readily treated such as wax in the ear canals or fluid in the middle ear. If you were told by anyone that you have “nerve deafness,” and there is nothing that can be done for you, seek another opinion—preferably from a physician who has expertise testing people with hearing loss.
Then See an Ear Specialist such as an ENT (ear, nose and throat physician or Otolaryngologist) or an Otologist who can check to see if your hearing loss is caused by a condition that can be treated by medical or surgical means.
Consult an Audiologist/Hearing Aid Dispenser for an Audiogram. Through a series of hearing tests, they will establish an audiogram for you that shows in visual form, a number of dimensions of your hearing loss. See page 6 for an example. Audiologists are highly educated and trained to determine the type and degree of your hearing loss, and whether you can be helped by a hearing aid (or aids), and what type of aid(s) would be best for you. Check to see if the audiologist’s title includes the letters CCC-A (Certified Clinical Competence — Audiology) which indicates certification from the American Speech-Language-Hearing Association. They also should be licensed in the state. Contact Oregon Academy of Audiology (541)850-1210, 2640 Biehn St. Klamath Falls, OR 97601, www.oregonaudiology.org or your local SHHH Chapter for a list of licensed Audiologists. Once you have an evaluation, you can then work with the audiologist who evaluated you or with a hearing aid specialist (aka hearing aid dealer). Hearing aid specialists don’t generally have post-graduate degrees in audiology and therefor cannot do diagnostic audiological serves. However they do have practical experience in the fitting and selection of hearing aids. They must also be licensed by the state and may be certified by the National Board for Certification in Hearing Instrument Sciences (BC-HIS). Call (1-866-647-4327) for a hearing aid specialist in your area.
Get your Hearing Aids. Your next destination is the office of an audiologist or hearing care professional who will work with you to select, fit and modify the appropriate hearing aids or to accommodate the special characteristics of your hearing loss. They’ll also introduce you to the use of aids and instruct you in their care and maintenance.
- Consider a Cochlear Implant if you can no longer benefit from hearing aids.
CHOOSING A HEARING CARE PROFESSIONAL
Make sure you have confidence and trust in the hearing care professional you choose. They should spend time to help you find the right hearing aid or other device and schedule several visits to work with you for adjustments and to teach you how to use and maintain your hearing aids. They should also be available to provide warranty or other service for the life of the aid.
Find out what program they have in place to teach you to use the aid or implant, and to communicate most effectively.
Make sure the dispenser allows at least a 30-day trial period. This is the law in Oregon. This gives you time to “test drive” the aid, just as you would when buying a new car.
Check beforehand which fees are non-refundable should you need to return the aids. Typically, costs for testing, custom-fit parts, and/or earmolds, are non-refundable.
Does the dispenser provide repair services for your model? Is a loaner available should your aid need repair?
Select a dispenser who offers different brands and models of hearing aids: behind-the-ear, in-the-ear, and in-the-canal styles. There are many manufacturers and there is no “best” hearing aid.
Consider the aid’s potential usefulness rather than its cosmetic appeal. Many people want the smallest aid available, but a small aid may not have the power or the features that you need to get the best results. Don’t short-change yourself. Be open to trying several styles of aids to see what difference they make.
Make sure the dispenser takes time to ask about your listening needs in detail. e.g. Do you need to hear in noisy rooms? Do you use the phone a lot? Listen to young children? The selection of hearing aids depends on your degree of hearing loss, our listening needs, your dexterity, and your financial situation.
SHHH recommends that every hearing aid have a telecoil. The telecoil enhances telephone use and allows you to use assistive listening devices in theaters, meetings, in noisy situations and with TV and stereo.
Don’t be pressured into purchasing specific aids or aids you are unsure about. Seek a second opinion if you want more information or want to compare prices.
Good hearing aid dispensers have a lot of creative solutions available: venting the earmold, making it from different materials, changing the diameter of the eartube or earhook, and making adjustments to the way the hearing aid amplifies sound. They will spend the time to teach you how to maximize your use of the aids – including the proper use of the telecoil. Fitting a hearing aid is both art and science, so be prepared to work with your dispenser to get the proper fit.
THE ADA AND YOU
The Americans with Disabilities Act (ADA) is a Federal civil rights law for persons with disabilities. The basic purpose of the ADA is to prohibit discrimination in employment (Title I), ensure equal access to services of state and local governments (Title II), and ensure equal access to places of public accommodation (Title III). One of the major areas of equal access is “effective communication” for persons who are hard of hearing, late deafened, or deaf.
In general, the concept of “effective communication” for persons who are hard of hearing, late deafened or deaf, refers to the assurance of equal access to any aurally delivered communication that is part of a service, activity, or event of a covered organization. This is usually accomplished with auxiliary aids and services. In general, the ADA requires that covered organizations provide the auxiliary aids or services, at their own expense, that are necessary to ensure effective communication, unless doing so creates an undue burden.
Usually, the auxiliary aid or service that the client, customer or participant is requesting is likely the one that is required for effective communication under the ADA. There are many kinds of auxiliary aids and services. The most common ones, which ensure effective communication in many interactive settings, are assistive listening devices, real-time captioning and qualified interpreters including sign language, oral, cued speech and tactile.
If you have questions about the ADA and how it can impact your situation, contact the Deaf and Hard of Hearing Access Program at 1257 SE Ferry Street, Salem, OR 97310, phone 1(800) 358-3117 voice/TTY. Or, you can contact SHHH National, 7910 Woodmont Avenue Suite 1200, Bethesda, MD 20814, phone (301) 657-2248 voice or (301) 657-2249 TTY or e-mail: firstname.lastname@example.org
|What matters deafness of the ear when the mind hears? The one true deafness, the incurable deafness is that of the mind.—Victor Hugo|
GENERAL COPING SKILLS
HOW WE CAN HELP OURSELVES, AND HELP OTHERS HELP US
Those of us with hearing loss sometimes forget how difficult it is for others to understand our limitations or how hard it is for them to always remember how best to communicate with us. But it’s self-defeating to think others don’t care. Even our family and our best friends will forget from time to time – sometimes just because they’re so excited and interested in what they’re saying that they don’t think about how it’s coming across to us. We think they’re mumbling; they think we’re not paying attention. We think they’re talking too fast; they think we’re really slow on the uptake. We notice they are walking away before finishing their statement; they think we can still hear them talking.
We must try to remember that the hearing world really does not know that, unlike glasses, hearing aids don’t correct, they merely AID. And that most people don’t understand that hearings aids or a cochlear implant do not restore normal auditory function. We must keep in mind that others may not comprehend the importance of maintaining visual contact with the speaker.
Other people, even those with whom we live, may not understand that our ability to hear can depend on the time of day, how we’re feeling, or our surroundings. Friends may mistake our lack of instant response for indifference, not comprehending that it takes time for our brains to sort and process into recognizable speech patterns the somewhat muddled sound we receive.
All this means that we must educate our friends, family and co-workers – and enlist their help – but in such a manner that we don’t alienate them. That calls for considerable finesse, a good sense of humor, and patience, patience, patience!!
Following are some strategies which should make life a little easier.
• Try to be no more than 3-6 feet away from the speaker. That is about as far as most hearing aids can pick up sound. Keep your head turned toward the speaker because most aids pick up sound best from the front. Tap your ear as a cue for others to speak up.
• Make use wherever possible, of a communications access symbol sticker. The sticker is an immediate, easily recognizable indication of your hearing loss and is available in various sizes from the SHHH national office. Possible uses are medical files where it will be readily visible, veterinarian records and dental charts.
• Let people know that you have a hearing loss and ask them to help by speaking a little more slowly, by moving hands away from their faces, and by not smoking or chewing gum. Ask them not to shout and to get your attention before speaking to you. Ask them to be patient, and maybe to state the topic of conversation, if there’s been a change from Aunt Hattie’s big toe to the football scores.
• Face the person with whom you’re conversing so you can see his lips and facial expression and observe gestures. Even if you’re not an accomplished speech reader, this technique will help. It’s estimated that people with normal hearing receive 25% of their information visually, and it’s even more important to us, the hard-of-hearing.
• Ask the person with whom you’re conversing to move so the light from the window shines on his face – not on the back of his head.
• Move away from, or turn off, background noises such as a fan, TV, radio, washing machine, dishwasher, or air conditioner. These make it more difficult to hear because you can’t separate those sounds from the speech patterns you want to hear.
• Remember that you won’t always understand everything that’s said. Don’t bluff and do watch for visual clues. Repeat what you think you heard to confirm that you got the message correctly. Ask questions that are specific if you miss something. Don’t just say, “What?” Ask, “Who were you talking about?” or “When did you say we would meet?” The speaker may become frustrated if constant repetition is needed, so try to keep your requests for repetition verification in the context of a conversational exchange.
• Use a pencil and paper if needed to confirm a date or verify a name. This may seem embarrassing, but it’s better than missing necessary information.
• Don’t forget that there’s a slight delay while the brain processes sound and tries to make sense of it. We’ll often ask, “What?” just a second before we actually understand what has just been said. Wait a bit before responding so the brain can process the information received.
• Also remember that listening requires a great deal of energy. Try to accomplish the most important things that require listening earlier in the day. Arrange for breaks in a long conversation.
• Thank speakers for helping you. If you always complain that they don’t remember your needs (and they won’t) they’ll avoid talking to you.
• Use humor. Lighten up. If the other person had the hearing loss and you did not, would you always remember to help him? Be patient with others and with yourself. If you take things personally, everyone loses.
• Wear your hearing aid!! It does no good in your jewelry box or sock drawer.
• Use Assistive Listening Devices (ALDs). Keep batteries handy so you can replace one that goes dead.
• Use e-mail, a fax, answering machine, and/or caller ID. All of these are great helps and can be used in lieu of or in conjunction with a telephone. But when you do use the telephone, especially when you use it for business purposes, be sure to state that you’re hard of hearing and how the other person can help you hear. Often, though certainly not always, those on the other end of the line will try to help by speaking more distinctly or turning up the volume on their handsets.
• And be sure to explain to family and friends that this is not just YOUR hearing loss, it is OUR hearing loss because they have to deal with it too. Everyone needs to work together to make it easier for the hard of hearing person to understand.
This information can be copied and carried in your vehicle. Keep it on your visor so it is readily accessible. (Check all that are applicable.)
|I am not able to hear well.
I may not be able to communicate effectively in all situations. I use speechreading to communicate. Please face me and speak clearly.
Please don’t put obstacles in front of your mouth.
I can’t see you to “hear” you if you shine a light in my eyes.
Please speak slowly – shouting doesn’t help.
Write notes if necessary.
Please have your dispatcher send a sign language interpreter.
|REALITY IS SOMETHiNG YOU RISE ABOVEYou don’t have to be a puppet manipulated by outside powerful forces; You can become the powerful force yourself. Don’t make thoughts your prison.The obstacles you face are mental barriers which can be broken by adopting a more positive approach. Don’t pray for tasks equal to your powers. Pray for powers equal to your tasks.
You are bigger than anything that can happen to you. This is where you will win the battle, in the playhouse of your mind. Courage is resistance to fear, mastery of fear, not absence of fear.
Courage is the capacity to confront what can be imagined. You are more important than your problems.
HANDLING DIFFICULT SITUATIONS
WHEN EATING OUT
Choose restaurants with carpeting, booths, and that are reasonably quiet. Keep a list of local restaurants known to be hearing friendly.
Keep your group small.
Ask for a quiet booth or table along a wall and away from the dishes and the door – explain why to the hostess or host.
Eat in off peak times.
Give a complete order so the waitress doesn’t have to ask you questions.
Tell the waitress about your hearing and what helps you.
Sit with your worst ear toward the noise.
Ask for the music to be turned off or down.
Be sure you’re not next to a large party of people.
Sit facing your partner or, if with more people, have your good ear next to the one sitting with you.
Avoid places with live entertainment.
Bring and use your personal assistive device.
Look for the “Specials” visually on the erase board or menu addition.
Smile at the staff and thank them for helping you.
If you have to pick up your food when your number is called, ask if they’ll deliver it to you if you don’t respond.
At a fast food place, tell them if it’s take out or stay in so they don’t have to ask.
Ask them to write it down if you can’t hear (the cost, etc.).
Sit in a well-lit area.
Have your back to a window.
Request a quiet room.
Ask for a menu ahead of time.
Keep a sense of humor.
All the feelings and difficulties hard of hearing people face are accentuated in the workplace. This is not surprising since our jobs, or our accomplishments at work, provide us with both an income and a sense of competence and self-worth. If there is an element of competition in the workplace, performance (or threats to our performance), can become an even more crucial measure to us of our value.
As in all situations where you can make a difference, it is important that you take the initiative by letting your co-workers know about your needs and how they can support your efforts to participate. Here are some of the things you can do.
Establish common business etiquette, for example:
Take turns speaking,
Repeat directions, agreements, appointments, etc. to be sure you understood.
Some people’s voices may be more difficult for you to hear, (for example higher pitched voices), let it be known to avoid future misunderstanding
Request that people speak more slowly, or more loudly if needed.
See if you can hold meetings in rooms with good acoustics (e.g. carpeting), little background noise, round or square tables instead of long tables, and good lighting.
Know your rights. A person being hired cannot be questioned directly about their hearing, but can only be asked if they can perform the job with “reasonable accommodations.” Although that term is not clearly defined, when you have the job you can request:
an amplified phone (try it first because not all of them will work for you)
an FM or loop system for meeting rooms
a work area that is as free as possible from background noise
Ask people to keep their hands away from their faces and let them know that beards and mustaches reduce your ability to speech-read.
When meeting at a restaurant, see if you can choose one you know to be quiet and well lit. If you can’t choose the restaurant, request or scout ahead to select a spot that is relatively quiet and well-lit with round or square tables. Keep a list of local restaurants that are “hearing friendly”.
Look in other sections of this booklet to find more coping skills that may apply to your work situation.
Whether you are a patient, visitor or employee in a medical setting, you can request an amplified phone, captioned TV, TDD, visual alerts for the phone ring, door knock and smoke alarm, and computer assisted communication or sign language interpreters – without additional cost to you. You can also ask that reasonable changes in policies, practices and procedures be made that will help you communicate. These are all covered under the Americans with Disabilities Act (ADA).
To improve communication in medical settings:
Use your pre-admission visit to discuss what your hearing loss needs will be during hospitalization.
Discuss any special notes or stickers to be used to alert staff to your hearing loss. A Communications Access Symbol sticker is an immediate, easily recognizable indication of your hearing loss. These are available in various sizes from the SHHH national office. See page 18.
Advise hospital staff of your preferred method of communication: speech reading, written, amplification, sign language, or a combination of things.
Don’t wait to be asked if you are hearing impaired; tell them!
Advise nurses and other hospital staff at the nurses’ station that you will not understand public address announcements or comments over the intercom. Ask them to place a sticker on their intercom to remind them.
Since you’ll be dealing with many different nurses and aides, you’ll need to keep reminding them of your hearing loss and telling them how to best communicate with you. A sticker on your medical chart will be a good visual reminder.
Be sure you clearly understand any medication instructions given you, including dosage, purpose and special procedures, if any. Repeat instructions to make sure you have them straight. Don’t hesitate to ask for written instructions.
Listening is hard work and will be an even greater drain on your energy when you are in the hospital or not feeling well. Inform visitors that you and your ears are tired and need a rest.
Be cooperative and pleasant but assertive and persistent concerning your needs while in the hospital. If you run into problems in having your needs met, ask to speak with the patient liaison, patient advocate or patient care coordinator for help in solving your problems.
In other medical situations:
Tell the receptionist when you check in for your appointment that you are hard of hearing and probably won’t hear your name called. Ask them to catch your eye or walk over to tell you.
Ask your dentist, family physician, eye doctor or other medical person to place the Communication Access Symbol sticker on your file where it will be readily visible. It goes on the outside of the file by your name. Another could be placed on the inside of the file in a place likely to be seen.
In radiology, when you’re lying on a dark flat surface, tell the technician you are hearing impaired and will not be able to speechread instructions in the dark. Have them flash a light on and off when you should exhale and inhale. For most radiology procedures it is OK to keep your hearing aids on – exceptions are MRIs, X-rays of the skull and CT or CAT scans of the brain.
Before eye surgery, talk with the surgeon about what you will and will not be able to do after surgery. Plan to use an FM listening system with your hearing aid if it will help you understand better. Ask that a nurse be available to help with communications.
For examinations when you cannot see the doctor’s face, arrange for a nurse to stand next to you to repeat instructions if necessary or ask the doctor to move alongside you to explain the findings. Make arrangements before the exam so that you are both able to communicate. If a drape is in the way, ask that it be moved to enable you to see the doctor’s face so you can speech read during the exam.
Most importantly, don’t just nod and pretend to understand the doctor’s orders when you don’t. It’s far better to repeat a question two or three times than to land in the emergency room because you misunderstood an instruction. Repeat the doctor’s instructions to be certain you understood them. As a final precaution, ask the doctor to write down important instructions.
Being a patient can be scary and stressful without hearing loss. Hearing loss can make the experience even harder. Making our needs known is a key to making life easier.
SHHH National has a wonderful Hospital Access Program with a video to train hospital staff on how best to communicate with hard of hearing people. Many hospitals have incorporated this program. Contact SHHH for more information.
Ignorance of the communication needs of hard of hearing and deaf people
Obtaining justice is no accident. To deal with your communication needs in court you should:
View the video tape “Silent Justice” which can be obtained from SHHH National or the Deaf & Hard of Hearing Access Program. (See resources section for contact information.)
Make a written request to the court administrator for appropriate accommodations as early as possible.
Keep dated records of all correspondence and phone calls.
Stand firmly by your request.
When you appear, be sure the devices or services you requested are there for your use, and reject poorly provided accommodations (or a total lack of accommodations).
Ask for a continuance (a later day in court) if services or devices are unavailable.
To obtain the best possible outcomes, plan ahead, be assertive about your needs and exercise your rights.
|I have come to discover through earnest personal experience and dedicated learning that ultimately the greatest help is self-help; that there is no other help but self-help – doing one’s best – dedicating oneself wholeheartedly to a given task, which happens to have no end but is an on-going process.– Bruce Lee I always try to turn my personal struggles into something helpful for others.
– Henri Nouwen
HEARING AIDS / COCHLEAR IMPLANTS AND YOU
With selection of the appropriate hearing devices and with practice, hearing aids and cochlear implants will help you to get the best hearing acuity and speech discrimination possible for your hearing loss. However, unlike what corrective lenses do for vision, these devices do not restore normal hearing. While your ability to hear and understand should improve noticeably, speech discrimination may still be difficult, especially in noisy situations. It takes time and patience to adjust to your hearing aids or cochlear implants. Getting the best results with either device takes time and learning. With cochlear implants this may take several months of use and periodic readjustments to achieve optimal results. As frustrating as the process may be, don’t give up too quickly and put your hearing aids in the drawer. Wear them as often as possible and try different settings in different situations to get the best results.
TYPES OF HEARING AIDS
Completely in the Canal (CIC): CIC hearing aids are the least visible of all types because they fit deep into the ear canal. However, due to their small size they cannot house a T-coil, and are not suited for the severe hearing loss range. Because of their placement, wind noise can be reduced and, depending on the loss, telephone use may be possible. Most CIC hearing aids do not have enough room for user controls. This style uses the smallest batteries, limiting the battery lifetime to less than a week.
In the Canal (ITC): These aids have the capacity of more power than the CIC style due to the use of a larger battery and receiver (loudspeaker). However, they are still not recommended for the severe hearing loss range. This style offers some user controls such as volume, program buttons etc. Depending on the size of the users ear, a T-coil may be possible. They may be difficult to insert if dexterity is an issue.
In the Ear (ITE): This style fills the complete bowl of the ear, providing the most space for larger batteries and more powerful components. The ITE aids can be fitted with T-coils and will provide enough gain to compensate for losses into the severe range.
Behind the Ear (BTE): The BTE aid has greatest flexibility for fitting all losses, from mild to profound. Most BTE aids will be equipped with T-coils and be compatible with other Assistive Devices, making them an attractive choice for many listening situations. BTE aids usually have a stronger telecoil. The mold can be easily changed, and changing batteries and inserting and removing the aid may be easier.
Programmable technology: This technology allows the dispenser to modify the sound of the hearing aid to better match the needs of the user, by programming a computer chip that controls the amplifier. This process ensures that the hearing aid can provide adequate amplification, especially as the amplification needs of the user change. The amplification of the sound however is still done by a conventional, electronic amplifier.
Digital hearing aids do not use the same amplification circuitry as other hearing aids, but instead use a computer chip. By making changes in a digital form the hearing aid can amplify more frequency ranges. Some benefits attributed to digital technology include noise reduction methods, feedback suppression, automatic volume adjustment, and automatically adjusted directional microphones.
Directional microphone technology has provided hearing aids with a method of amplifying sounds to the front of the wearer with more gain than the sounds to the rear. This is especially useful for improving audibility in background noise situations such as restaurants or large groups. There are several different types of directional microphone designs, however the concept remains the same.
If recruitment is a problem, look for a hearing aid with good compression. The hearing aid will amplify louder sounds much less than quieter sounds.
CHOOSING YOUR HEARING AIDS
As described above, there are many recent improvements and developments in hearing aid technology. However, it is important for you to get the aid that is best for your hearing loss and your lifestyle. This may or may not require the “newest technologically advance” hearing aids. A smaller aid is not necessarily better. You may need more power than the smaller aid can provide, and you’ll definitely want to consider a telecoil to help you use the telephone and assistive listening devices. Your dispenser will help you decide what’s right for you based on your audiogram, but everyone is different. Be ready to try more than one model of hearing aid to find the best one for you. Buy hearing aids only if there is at least a 30-day return policy so you can try different models. Be sure to get a contract and written warranty. Ask if your dispenser offers classes in coping to help you adjust.
TWO AIDS ARE BETTER THAN ONE
For many people, it is beneficial to wear two hearing aids. Consider:
Take advantage of your resources by using two hearing aids (if you are capable of using amplification in both ears), since the clarity of the message will be optimized by the brain.
Optimum hearing and processing of information occurs when we use both ears. Using two hearing aids provides greater efficiency and clarity than just one aid because the brain needs less volume for understanding. This makes loud sounds less annoying, listening is less stressful and your ears are better protected from excessive amplification.
Safety increases because you are better able to determine which way a sound is coming from with two hearing aids.
You’ll avoid being unintentionally rude due to the fact that one-eared listeners tend to ignore someone speaking into their “deaf” ear while the good one is listening to other sounds.
- Auditory synergy is an advantage because the right side of your brain functions differently than the left. When the two can operate together, it helps auditory intelligence.
- Hearing in noise is difficult or impossible with only one good ear. Together the blended voices can often be converted to a collection of distinguishable voices.
- A person with a hearing loss in both ears who wears a hearing aid in only one ear loses much of the ability to recognize speech in the other ear. This is called auditory deprivation.
For many people, it is beneficial to wear two hearing aids. Binaural amplification is crucial to the development of speech and language skills in children who have a loss in both ears. Two ears really are better than one. Wearing two hearing aids doesn’t make sounds twice as loud, but with two the brain has more information that will help you hear and understand.
A telecoil (T-coil) is the best means of communicating on the telephone and it also allows you to use an assistive listening device (ALD) such as an induction loop used in some public meeting rooms and theaters. These ALDs and telephones use electromagnetic energy to transmit sound. When you switch your hearing aid to the “T” setting, you activate an induction coil that causes your hearing aid to pick up the electromagnetic field produced by the telephone or ALD. With a T-coil, only the transmitted sound is amplified and background noise is reduced or eliminated.
Without T-coils, your hearing aids cannot take advantage of the above options. Be sure you talk to your dispenser about the need to have them on each of your new hearing aids or having your current aids retrofitted. A telecoil may add a small amount to the price, but the benefits far outweigh the cost. They are available in behind-the ear and in-the-ear hearing aids but, due to space limitations, often are not available for the tiny in-the-canal hearing aids.
Some adjustment may be needed to get used to the telecoil. Experiment; ask your hearing care professional for advice on how to use the telecoil in your hearing aid most effectively, and then practice! For example, you may need to determine the best angle to hold the handset of the telephone with respect to your hearing aid, and you may need to increase the volume on your hearing aid when using it. If you hear buzzing or humming when your hearing aid is on the “T” it could be caused by fluorescent lights, power lines or the computer monitor. Try moving your head to see if you can reduce the noise.
LEARNING TO USE YOUR NEW HEARING AIDS
Adjusting to a new hearing aid takes time, determination and patience. Different people react differently. Your age, the severity of your hearing loss and your acceptance of the need for a hearing aid may strongly influence your reaction to hearing with amplified sound.
Adjusting also requires practice and an application of common sense. Do not expect perfection. People often think they can put on the aids, walk out of the office, and hear perfectly again. The reality is that once you’ve gotten your aids, your work has just begun. Here are some tips for adjusting:
- Use your hearing aids first at home. Your hearing aid amplifies noise as well as music or speech. You may be disturbed temporarily by background noise. Concentrate on listening for all the normal household sounds and try to identify each sound you hear. Once you can identify background noises, such as the hum of the refrigerator, the roar of an electric fan, the clinking of the dishes or the slamming of doors, these noises will tend to be less annoying and distracting to you.
- Get used to manipulating your aids by inserting and removing them, changing the battery, adjusting the controls, etc. in the relaxing environment of your own home.
- Accustom yourself to the use of the hearing aid by listening to just one or two other persons in a quiet setting—friend, spouse, or neighbor. Talk about familiar topics. Use common expressions, names, or a series of numbers for practical purposes. Then try watching television and reading aloud to yourself.
- The importance of listening carefully and concentrating on what is being said cannot be overemphasized. But don’t worry if you miss an occasional word. People with normal hearing miss individual words or parts of sentences and unconsciously “fill-in” with the thought expressed. You’ll need to become even more visually attuned—intently observing facial expressions and body language in order to pick up clues about what is being said. By keeping your eyes on the face of the speaker, you’ll find speech reading to be a great help as a supplement to the hearing aid.
- Increase your tolerance for loud sounds. At first, hearing aid wearers tend to set the volume control at a level too low for efficient listening. While watching TV or talking to one person, try turning up your aid’s volume until the sound is very loud. When the loudness is uncomfortable, very slowly turn the volume down to a more comfortable level. After a period of practice you’ll find your comfort level has increased considerably.
- Gradually increase the number of situations in which you use your hearing aids. After you have adjusted fairly well in your own home to background noise and to conversation with several people at once, you’ll be ready to extend the use of your hearing aids to the supermarket, church, office or other public places. Turn the volume low to reduce the impact of unfamiliar background noise. Experiment with adjusting volume and, if your aid is a programmable one, try changing programs in different situations.
- Use the aid’s telecoil (T-coil or T-switch) with the telephone and see if it helps you hear on the phone. You’ll need to experiment with the position of the telephone handset on your ear, since the location of the T-coil switch varies from model to model. Some older telephones may not be hearing-aid compatible. Getting used to the placement of the telephone and getting used to listening in this manner requires practice. Ask a friend or family member to practice with you.
- Keep a written record of your experiences so you can tell the dispenser how you’ve done when you return for a follow-up visit. This is important. The more accurate and specific you can be in telling what works or doesn’t work for you, the better help you will receive.
- Sometimes earmolds or hearing aid cases can be irritating. If yours is, go back to your hearing aid dispenser and ask to have the earmold or tube adjusted. If you experience an allergic reaction to the mold or casing, ask for them to be re-made using hypo-allergenic material.
- Have patience. Your brain needs time to learn to interpret the new sounds it hears. You need time to become comfortable with the aids. Research shows it takes about 12 weeks of continuous wear to complete this adjustment.
COST AND INSURANCE COVERAGE FOR HEARING AIDS
Hearing aid costs vary because of design and power, but none are inexpensive. Your dispenser will work with you to find the one that works best for you. The greater your loss and the more diverse the situations in which you need to hear, the more expensive your hearing aids are likely to be. Even though your hearing aids may be expensive, our advice is to get the best hearing aids for your loss that you can afford.
What about the cost? Medicare doesn’t cover hearing aids and few insurance plans cover them, although some plans will pay for the audiologist exam. However, the Blanche Fischer Foundation and the State of Oregon Department of Vocational Rehabilitation may provide financial support based on need and on ability to pay. In addition, some employers will include hearing aid coverage if requested, particularly by a number of employees, or as part of a “cafeteria plan.” Medicaid may pay for one aid. You might also contact the Lions Club, Seretoma International or Hear Now at (800)-648-HEAR for help with the cost of hearing aids.
HELP! MY HEARING AID HAS A PROBLEM!
My Aid Whistles
- How well does your ear mold or aid fit? If it is too loose the sound will leak out and feed back to the microphone.
- Is there a break in the tubing?
- Is there moisture in the tubing?
- Is there wax buildup in the ear canal?
- Is there a crack in the hearing aid casing?
- Is there fluid behind the eardrum?
- Ears can gain or lose weight and the mold may need to be remade.
- Has your hearing changed?
My Aid Sounds “Tinny”
- Too many high frequencies are being amplified.
- Ask your dispenser about “compression”.
I’m Talking in a Barrel
1. There may be too many low frequencies amplified.
2. There might be too little venting.
3. It may fit too deeply or be occluded.
There’s Too Much Background Noise
Background noise makes hearing difficult for most people. It is one of the most difficult problems for people who are hard of hearing.
- Hearing aids often seem to make noisy situations worse. You can turn the babble down so the hearing aid is not amplifying the background as loudly, or you can use the directional microphone option on your hearing aid if you have it. You can also try moving closer to the speaker.
- Use an assistive listening device such as an FM or pocket-talker to transmit the desired sound to your ears via an earbud or directly into your hearing aid via the telecoil. Often a directional microphone works best in noise and the car.
- Newer, programmable hearing aids and new features, such as multiple microphones, or multiple programs allow better signal to noise ratios.
Sounds Seem Distorted
- You may have turned your hearing aid up too high and it is saturated.
- You may need a second aid to help you hear well.
- Your hearing aid may have gotten wet, or for other reasons, needs repair.
- You may need to put in a fresh battery.
CARING FOR YOUR HEARING AID
Your hearing aid is an electronic appliance like a radio, tape player or watch. It needs a battery to work and requires regular maintenance and cleaning. Treat this costly investment carefully, with respect.
The two most common causes of hearing aid problems are earwax and moisture. The worst of these is earwax, which can obstruct tubing from the microphone or the vent. Use the tools you received with your aid to clean it daily and get tools if they weren’t supplied. For an in-the-ear aid you need to clean the aid and the ear daily. Use an old dry toothbrush to clean the aid. The morning after the aid has cooled down and the wax has hardened is the best time.
Moisture is the second greatest cause of problems and can result in damage to the mechanical and electronic components or obstruct sound from passing through the tubing. Whenever possible, do not expose your hearing aids to moisture, including perspiration, the shower, heavy rain, hot tubs or the lake. When you are not wearing your hearing aids, store them in an airtight container that contains desiccant (a number of types are sold by audiologists and dispensers). Remove the battery to avoid possible corrosion of the battery contacts.
To clean the battery contacts use a cotton swab with a little rubbing alcohol. Battery doors break now and then and are easily installed by your dispenser. Hair spray clogs microphone openings and discolors the shell casings. Turn the instrument off when it is not being used.
Batteries need to be replaced fairly frequently because they function constantly and must power a mini amplifier, microphones and speaker. You can use a battery checker, available from most hearing aid dispensers, to see if you need to change the battery. Always open the battery cover at night to allow moisture to evaporate and prevent battery power drain.
WHAT SHOULD I DO WITH MY OLD HEARING AIDS?
Most people replace their aids every 3 to 5 years, but it is handy to keep your old pair as spares to use when your primary hearing aids stop functioning and need service or repair.
If you have extra hearing aids that you don’t want, contact your local Lions Club or HEAR NOW, a non-profit organization founded to collect hearing aids and distribute them to those who can’t afford them. You or your dispenser can send them to 4001 S. Magnolia Way, Suite 100, Denver, Colorado 80237. They accept all hearing aids, including non-working aids, which can be salvaged and used to repair other aids.
If you have a severe to profound hearing loss and receive minimal benefit from your hearing aids because of the severity of your hearing loss, you might want to explore the benefits of a cochlear implant.
A cochlear implant is an electronic device that changes sound into electrical impulses and uses these electrical impulses to stimulate the hearing nerve. The brain interprets this stimulation as sound. A cochlear implant contains several parts. There is a microphone that picks up sound and sends it to a sound processor. The sound processor is a small box worn on the body or behind the ear. There is also an internal receiver that is implanted under the skin behind the ear. The internal “receiver” takes these electrical signals from the processor and sends them down a thin wire containing electrodes. This wire with electrodes is implanted into the inner part of the ear, the cochlea.
Cochlear implant candidacy is determined by information gathered by an implant team at an implant center. The FDA and the implant center determine the criteria for implant candidacy. First, an audiologist will administer several tests to obtain information about auditory performance both with and without hearing aids. If the person meets the audiological criteria, he or she is sent to the surgeon to see if he/she meets medical criteria. The person will then undergo medical tests including an MRI and CAT Scan. During that time, you will receive counseling about the risks and benefits of an implant. This is an important step. Cochlear implants are generally covered by health insurance, Medicare, Oregon Medical Assistance Program, and the Veteran’s Administration. Your implant center will assist you in obtaining preauthorization from your insurance company.
Once the surgery is performed and healing is completed (usually about one month), you will receive the external speech processor and related accessories. It takes a period of time for people to learn how to use the new sound from their implant. You will need to return to the implant center several times the first year and occasionally in future years to update the settings in the processor, as your auditory system becomes accustomed to the implant.
Most recipients find the implant helps them hear environmental sounds, improves speech reading, helps them understand voices without looking at the speaker, and helps them monitor their own voice. Some cochlear implant users are able to enjoy music again and many are able to have full use of the telephone. Each person’s results with the cochlear implant are unique and depend on a variety of factors.
The criteria for cochlear implants has changed over the years and will continue to change as improvements are made in the implants. The criteria at press time is:
Children (12 months to 2 years)
• Profound deafness in both ears
• Lack of progress in the development of auditory skills
• High motivation and appropriate expectations from the family
Children (2 years to 17 years)
• Severe-to-profound sensorineural hearing loss (“nerve deafness”) in both ears
• Receive little or no useful benefit from hearing aids
• Lack of progress in the development of auditory skills
For adults (18 years or older)
• Severe-to-profound hearing loss in both ears
• Pre or Postlinguistic onset of hearing loss
• Receive little or no useful benefit from hearing aids; i.e., a score of 50% or less on sentence recognition
• tests in the ear to be implanted and 60% or less in the non-implanted ear or bilaterally
If you have been or are found not to be an implant candidate, you may want to check back with the implant center each year to see whether the criteria, or your hearing has changed.
In California, there are currently twelve cochlear implant centers.
California Ear Institute
801 Welch Road
Palo Alto, CA 94304
Children’s Hospital San Diego
3030 Children’s Way MC5010
San Diego, CA 92123
Ear Specialty Center
9850 Genessee Avenue Suite 650
La Jolla, CA 92037
Hearing Institute for Children & Adults
2400 Samaritan Drive #100
San Jose, CA 95124
House Ear Clinic (for Adults)
2100 W. Third Street
Los Angeles, CA 90057
House Ear Clinic (for Children)
2100 W. Third Street
Los Angeles, CA 90057
ENT/ Audiology Department 4900 Sunset Boulevard
Los Angeles, CA 90027
Oakland Children’s Hospital
Pediatric Audiology 747 52nd Street
Oakland, CA 94609
3810 J Street
Sacramento, CA 95816
UCSD Medical Center
200 W. Arbor Drive #8895
San Diego, CA 92103-8895
UCSF-Stanford Health Care (UCSF-SHC)
400 Parnassus Avenue, Rm A701
San Francisco, CA 94143-0340
USC University Hospital
1510 San Pablo, Suite 201
Los Angeles, CA 90033
|A man confided to his doctor that he thought his wife had a hearing loss but wouldn’t admit it. The doctor suggested that he ask her the same question while moving closer to her each time he asked and that would tell him.
When he entered the front door of his home, he said, “Honey, I’m home. What’s for dinner?” NO ANSWER.
He went into the living room and asked the same question. NO ANSWER.
He went into the dining room and tried again. NO ANSWER.Finally, he stood right behind her and said again loudly, “Honey, I’m home. What’s for dinner?”She turned around and said disgustedly, “For the fourth time, we’re having spaghetti.”
Communication is civilization itself. It is silence which isolates.— Thomas Mann
REALLY GOOD STUFF TO USE INSIDE YOUR CASTLE AND BEYOND THE MOAT
Like a hearing aid, an assistive listening device (ALD) makes sounds louder. Typically, a hearing aid makes all sounds in the environment louder. An ALD can increase the loudness of the desired sound (a radio, or TV, a speaker, an actor/actress or someone talking in a noisy place) without increasing the loudness of background noises.
Most people with hearing loss can benefit from ALDs. Some assistive listening devices are used with a hearing aid or cochlear implant, others can be used without a hearing aid.
There are many ALDs available today, from sophisticated systems used in theaters and auditoriums to small personal systems. Here are several examples of devices that can help you in day-to-day situations. Catalogs from vendors are a great way to find out about different options that might help you.
Personal Listening Systems: There are several types of personal listening systems available. All are designed to carry sound from the speaker (or other source) directly to the listener and to minimize or eliminate environmental noises. Some of these systems, are designed for small group or classroom use. Others, such as personal FM systems and personal amplifiers, are especially helpful for one-to-one conversations in places such as automobiles, meeting rooms, and restaurants.
TV Listening Systems: These are designed for listening to TV, radio, or stereo without interference from surrounding noise or the need to use very high volume.
Telephone Amplifying Devices: If your hearing aid has a “T”-switch, try using it with your telephone. To test it, flip the switch on your hearing aid from “M” to “T”. You may need to turn the volume up on your hearing aid when you turn to “T”. Hold the telephone ear piece in different positions close to your hearing aid (not necessarily over your ear) until the sound comes in clearly. Using the “T”-switch with the phone will reduce feedback, help cut out background noise, and help prevent others from overhearing your conversation. You may need to experiment with several phones to find one that works well for you.
Many but not all standard telephone receivers come with an amplifying coil. This coil is activated when the telephone receiver is picked up by a person whose hearing aid is in the “T” position. This position allows the aid to be used at a comfortable volume without feedback and with minimal background noise. These phones are called “hearing aid compatible.” Not all hearing aids have a “T” (telecoil) switch.
In addition there are specially designed telephones which amplify sound. Special amplifying devices can be purchased that attach to a phone. Most of these devices have volume control dials.
Other Telephone Options: If you can no longer use the telephone due to the severity of your hearing loss, text telephones (TTYs) and Telephone Relay Services are good options. A TTY looks much like a typewriter keypad with a text screen. It allows a hard of hearing or deaf person to make a telephone call by reading the conversation on a lighted display screen and/or a paper print-out from the TTY. The relay service uses a special operator and allows a person to call someone with a TTY from a standard telephone and vice versa.
Auditorium Type Listening Systems: Many auditoriums and theaters, places of worship, and other public places are equipped with special sound systems for people with hearing loss. Essentially, they consist of a transmitting system which uses one of a variety of methods to send sound signals to an individual receiver. If you have a T-coil, request a receiver with a neckloop, if the system itself is not a loop. Otherwise you may be able to wear the headset over the hearing aids, or may need to use a headset in lieu of hearing aids.
In California, all rooms with 50 fixed seats are required to have permanent listening systems. California does not exempt religious organizations.
Alerting devices: These devices use flashing lights or vibrations to alert you to door knocks, door bells, telephones, burglar alarms, smoke and fire alarms, baby cries, etc. In addition to devices, certified hearing dogs are trained to respond to sounds and alert you to them.
Television Options: Besides the ALDs previously mentioned, you will likely want to turn on your TV’s closed caption capability. All TV’s built for sale in the US since 1993 have a built-in decoder chip that can display the text of dialogue and sounds on TV and videos, if the program has been encoded.
E-mail: E-mail is a wonderful communication tool. It requires a computer with a modem but one doesn’t have to be computer literate to use it. An older model computer is workable as is the TV screen. It requires you to be set up with a server such as America Online or juno.com. There are many to choose from and some are free. When using the phone is difficult, e-mail is a great way to keep in touch.
Fax and Caller ID are useful tools also.
Realtime Captioning: This service is provided by court reporters who have training and experience in realtime reporting. The reporter types into a stenographic machine, which is connected to a computer. The computer translates the stenotype shorthand into English, which is simultaneously displayed on a computer monitor, TV screen or large wall screen.
Realtime Captioning can be used in any situation where communication is needed. Most often, Realtime Captioning is used in group meetings, legislative hearings, workshops, classroom settings, court proceedings, advisor councils and board meetings.
If you are considering assistive technology, check with your hearing care professional and other vendors who specialize in this type of technology for help in determining which device is best for you. You can also contact SHHH for more information about these items.
Assistive Technology Resources
Weitbrecht Communications, Inc.
2716 Ocean Park Blvd., Suite 1007, Santa Monica, CA 90405
To be so strong that nothing can disturb your peace of mind.
To talk health, happiness and prosperity to every person you meet.
To make all your friends feel that there is something in them.
To look at the sunny side of everything and make your optimism come true.
To think only of the best, to work only for the best, and to expect only the best.
To be just as enthusiastic about the success of others as you are about your own.
To forget the mistakes of the past and press on to the greater achievements of the future.
To wear a cheerful countenance at all times and give every living creature you meet a smile.
To give so much time to the improvement of yourself that you have no time to criticize others.
To be too large for worry, too noble for anger, too strong for fear, and too happy to permit the presence of trouble.
YOU ARE NOT ALONE. . .
SHHH is the largest consumer organization of hard of hearing people in the U.S. SHHH opens the world of communication to people with hearing loss who are committed to participating in the hearing world by providing information, education, support and advocacy.
SHHH in California
There are many SHHH chapters in California. Local meetings are open to all, and family and friends are encouraged to attend and become involved. Through chapter meetings and newsletters you’ll find:
- Insights into effectively living with hearing loss
- Information about the latest technology
- Opportunities to share concerns and hear from others
We believe in education—for those who hear well and those who cannot—so that all may understand the causes, challenges and possible remedies for hearing loss. At our meetings, you’ll find a comfortable place where hearing loss is accepted and not a problem.
Please check us out. Meet new friends who, perhaps like yourself, are learning what they can do about their hearing loss. Talk with some of the “old hands” who will be glad to share what they have learned about dealing with the challenges of hearing loss. You’ll be glad you did.
To learn about an SHHH chapter in your area, see www.hearinglossca.org or if you are interested in starting a new one, contact:
Northern CA Chapter Coordinator Cindy Jagger, email@example.com
Southern CA Chapter Co-Coordinator Leo Maggio, firstname.lastname@example.org
Southern CA Chapter Co-Coordinator Barbara Tucker, email@example.com
We publish a statewide quarterly SHHH newsletter, The SHHH Californian. If you would like to receive a trial subscription, please send your mailing information to Grace Tiessen, 714 Prospect Blvd., Pasadena, CA 91103.
Alexander Graham Bell Association for the Deaf and Hard of Hearing, Inc. (AGBell)
3417 Volta Place NW, Washington, DC 20007
202-337-5220 Voice/TTY, www.agbell.org
AGBell is the largest organization in the U.S. focused on the needs of children with hearing loss who use auditory/oral approaches to communicate. AGBell provides ongoing support and advocacy for parents, professionals, and other interested parties.
Auditory-Verbal International, Inc. (AVI)
2121 Eisenhower Ave., Suite 402, Alexandria, Virginia 22314
703-739-1049 Voice, 703-739-0874 TTY, www.auditory-verbal.org
AVI provides the choice of listening and speaking as the way of life for children who are deaf or hard of hearing through education, advocacy, and family support. The goal for deaf and hard of hearing children is to be mainstreamed and to become independent, participating citizens in the hearing society.
Better Hearing Institute (BHI)
515 King Street, Suite 420, Alexandria, VA 22314
703-684-3391 Voice, 703-684-3391 TTY, www.betterhearing.org
BHI implements national public information programs on hearing loss and available medical, surgical, hearing aid, and rehabilitation assistance for millions of Americans with uncorrected hearing problems. BHI’s new initiative, Physican Referral Development Program, hopes to build a bridge between hearing professionals and family physicians.
Deaf Research Foundation (DRF)
1225 I Street NW, Washington, DC 20005
202-289-5850 V/TTY, www.drf.org
DRF is the largest privately funded health organization committed to finding the causes of all forms of hearing loss as well as ways to prevent and treat such loss. In 1999, DRF launched its National Campaign for Hearing Health, a 5-year public outreach, professional education, and Government relations initiative to ensure that all Americans, especially children can benefit from research breakthroughs and understand the irreplaceable value of lifelong hearing health.
DOGS FOR THE DEAF
10175 Wheeler Road, Central Point, OR 97502
541-826-9220 voice/TTY, 541-826-6696 FAX, www.dogsforthedeaf.org
Dogs for the Deaf rescues and trains dogs to assist people who are hard of hearing or deaf. A hearing dog can serve as a person’s ears by alerting their owner to various day to day sounds, such as a baby crying, a knock at the door, a ringing door bell, the alarm clock, smoke alarm, oven buzzer, microwave beep or the owner’s name being called. No charge to the applicant for a hearing dog from this organization.
House Ear Institute (HEI)
2100 West 3rd Street, Los Angeles, CA 90057
213-483-4431 Voice, 213-484-2642 TTY, www.hei.org
HEI is a private, nonprofit research and professional education facility that investigates the causes of hearing loss and vestibular disorders. HEI also offers a full range of hearing tests, otologic and audiologic evaluation and treatment, hearing aid dispensing and cochlear implant services.
John Tracy Clinic
806 West Adams Blvd, Los Angeles, CA 90007
Providing Free services worldwide to families of preschool children with hearing loss. Free Correspondence Education program and on-site services for families of preschool children, ages birth to 5 years.
Geared to the special needs of hearing impaired children and their families. A one-stop place for information, answers, help, ideas, resources, and anything else related to hearing impairment. www.listen-up.org
My Baby’s Hearing
Developed by Boys Town National Research Hospital with support from NIDCD. www.babyhearing.org
National Association of the Deaf (NAD)
814 Thayer Avenue, Silver Springs, MD 20910
301-587-1788 Voice, 301-587-1789 TTY, www.nad.org
NAD safeguards the accessibility and civil rights of 28 million deaf and hard of hearing Americans in the areas or education, employment, health care, social services, and telecommunications
National Institute on Deafness and Other Communication Disorders (NIDCD)
NIDCD conducts and supports research on disorders of hearing and other communication processes, including diseases affecting hearing, balance, smell, taste, voice, speech, and language. www.nidcd.nih.gov
FREE Parents’ Information Kit and video, “Dreams Spoken Here”, a documentary about deaf children learning to talk. Open captioned in English, Spanish, French, Chinese. Phone 877-672-5332 for your free copy. www.oraldeafed.org
Telecommunication Access for the Deaf and Disabled (TADD)
TADD (formerly DDTP) is a California State mandated program, which oversees the California Relay Service and distributes free telephones, telecommunications equipment and services for individuals certified as having functional limitations of hearing, vision, mobility, speech and/or interpretation of information. www.ddtp.org
There are seven service centers where you may shop for your free phone.
CTAP Burbank Service Center (opened August 11, 2003)
303 N. Glenoaks Blvd., Suite 130
Burbank, CA 91502
CTAP Fresno Service Center
1320 East Shaw, Suite 130
Fresno, CA 93710
CTAP Oakland Service Center
1970 Broadway, Suite 650
Oakland, CA 94612
CTAP Riverside Service Center
6370 Magnolia Avenue, Suite 310
Riverside, CA 92506
CTAP Sacramento Service Center
2033 Howe Avenue, Suite 150
Sacramento, CA 95825
CTAP San Diego Service Center
2878 Camino Del Rio South,
San Diego, CA 92108
CTAP Santa Ana Service Center
2677 North Main Street, Suite 130
Santa Ana, CA 92705
HEARING LOSS RELATED INTERNET AND E-MAIL RESOURCES
(Good Stuff…. and free!) There are some wonderful resources available to you on the Internet. One way of gaining access to a world of great hearing loss related information is to subscribe to one of the free electronic mail lists available to you. When you subscribe to a list, the list serve software will add your name to the list. Generally you will receive a letter of welcome or some type of confirmation that your name has been added to the list. The confirmation letter will also include important information about the e-mail address to send messages to, recognized commands, and information about how to unsubscribe. It is always a good idea to keep this information accessible for future reference.
From that point on, you will receive any message that is generated by that particular list. And you can join in the discussion by sending a response to the listserve address, or simply read (“lurk”) anonymously. In order to respond to a post you can address your response to the entire list or privately to an individual on the list. Here are some popular ones:
BEYOND-HEARING – an e-mail list intended to provide a communication vehicle for people who have hearing loss and who seek to overcome the barriers of hearing loss amongst themselves, other people, and the environment. Hard of hearing people, SHHH members, Association of Late Deafened Adults (ALDA) members and such other people who might be interested are invited to join this mail list. To subscribe, send an e-mail message to: firstname.lastname@example.org
Leave the subject line blank. In the body of the message type: subscribe beyond-hearing
CI CIRCLE FOR PARENTS – another mail list that focuses on children and cochlear implants. In order to sign up send a message to: email@example.com
Leave the subject blank. In the body of the message type: subscribe cicircle
COCHLEAR IMPLANT FORUM – the focus in this group is as its name implies—cochlear implants. This is a good place to ask questions if you are considering getting an implant, have an implant, simply want to know about the experiences of others who have them, or other questions you might have related to CI’s. To subscribe, send e-mail to: firstname.lastname@example.org
Leave the subject line blank. In the body of the message type: subscribe ci first name last name
using your real name.
DIZZINEWS is a vestibular disorders discussion group. To subscribe, send an e-mail to:
Leave the subject line blank. In the body of the message type: subscribe dizzinews
MENIERE’S DISCUSSION GROUP – For information on subscribing, go to www.menieres.org
NOISE (Network for Overcoming Increased Silence Effectively)—A list which is open to people in all fields of health care, including practitioners and students in human medicine and nursing, dentistry, audiology and veterinary science. To subscribe, send an e-mail message to:
Leave the subject line blank. In the body of the message type: subscribe NOISE first name last name using your real name.
FOR PARENT OF HOH KIDS – A listserv for parents of hard of hearing kids can be subscribed to through the SHHH website: http://www.hearingloss.org
Click on “Other Resources” in the left column. Enter your email address, then click on “Join List”. To send a message to other subscribers on the list, address your message to:
PARENTDEAF- HH – A list serve for the discussion of parenting issues faced by parents raising children who are deaf or hard of hearing. Parents, educators and professionals are invited to subscribe. This discussion list is sponsored by the American Society for Deaf Children (ASDC) to provide a forum for parents to share their questions, concerns, successes and failures with others who have similar experiences.
To subscribe, send an email message to: email@example.com
Leave the subject line blank. In the body of the message type: subscribe PARENTDEAF-HH your real name (not your screen name please).
SAYWHATCLUB An on-line group of over 200 late deafened and hard of hearing and other interested folks who provide support and encouragement to each other through e-mail. If you’d like more information about joining the SayWhatClub, contact: firstname.lastname@example.org
SUPPORT GROUP FOR “MIXED COUPLES” – A support group for deaf-hearing couples. Contact:
www.list.vnet.net and arrow down to organizations and clubs. Click “DHC”.
FOR MORE LINKS TO LOTS OF PLACES:
“Keys to Living with Hearing Loss” by Marcia Dugan (1997)
”Hear: Solutions, Skills, and Sources for Hard-of-Hearing People” by Anne Pope (1997)
”An Invisible Condition: The Human Side of Hearing Loss” by Rocky Stone
”Assistive Devices: Doorways to Independence” by Cynthia Comptom (1989)
”Balancing Act” by Virginia M. Scott (1997)
”Bright Silence: Raising Hearing Impaired Children” by Margaret Ferris (1994)
”Coping with Hearing Loss” by Susan V. Rezen (1993)
”Do You Hear Me? Laughs for the Hard of Hearing by the Hard of Hearing” by Maxwell Schneider (1996)
”The Feel of Silence” by Bonnie Potras Tucker, J.D. (1996)
”Full Face: A Correspondence About Becoming Deaf in Mid-Life” by Claire Blatchford (1997)
“Missing Words: The Family Handbook on Adult Hearing Loss” by Kay Thomsett and Eve Nickerson (1993)
”Odyssey of Hearing Loss: Tales of Triumph” by Michael A. Harvey, Ph.D. (1998)
”Patrick Gets Hearing Aids” by Maureen Cassidy Riski and Nikolas Klakow (1994)
”Wired for Sound: A Journey Into Hearing” by Beverly Biderman (1998)
These and many more interesting articles and books are available from:
7910 Woodmont Avenue, Suite 1200
Bethesda, MD 20814
(301)657-2248 -voice or (301)657-2249 TTY
TRYING TO BELONG
So. . . you think my hearing’s gone
“Cuz I bought weeds for your lawn
And the buttons that I bought won’t fit your boat?
If I didn’t get it right
Doesn’t mean that I’m not bright,
It just means that I’m trying to belong.
I laugh when I hear wrong
And my words don’t fit your song;
But the brave smile you see isn’t real.
For it hurts when people shout
But it’s worse to be left out.
I’m just trying hard to belong.
Please help me to fit in.
When I stumble then just grin.
Help me understand the things that I can’t hear.
Just encourage when I try
And I know that by and by
I will feel that I truly still belong.
Leone Miller SHHH Lane County
Accept the challenge
so that you may feel the exhilaration of victory.