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Facing the Challenge - A Survivor`s Manual for Hard of Hearing

1. resulting in one or more initial programs It takes a period of time for people to learn how to interpret some of the sounds from their implant You will need to return to the audiologist 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 and your brain learns more of the meaning of different sounds Be patient Remember that each person s results with a Cl are unique depend ing on a variety of factors 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 Cl users are able to enjoy mu sic again and many are able to have full use of the telephone Many cochlear implant users find using assistive listening devices ALDs along with their cochlear implant very helpful in a variety of situations Cochlear implants with telecoils work the same way as a hearing aid with a telecoil does and provides the same benefits for understanding on the telephone and in noisy environments and using a personal FM system or a personal listening assistant Most Cls have an option to link with these ALDs using a special cable and some use Bluetooth to connect A neck loop provides another op tion If the room is outfitted with an auditory loop system just your telecoil is needed Most clinics now
2. 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 In order to participate in or just read in fo rums chat discussion groups and similar websites you will usually have to sign up to join the group Instructions on how to do this are provided on the specific website Here are some popular online sites GENERAL RESOURCES Association of Medical Professionals with Hearing Loss AMPHL AMPHL provides health professionals a way of networking with oth ers who have similar hearing losses Website www amphl org Parent to Parent The goal of this site is to empower parents of hard of hearing and or deaf children by providing the resources necessary for them to make informed decisions about their children s hearing loss www kidsandhearingloss org Hearing Loss Web is dedicated to people who have hearing loss but are not members of the traditional Deaf community This includes people who consider themselves to be hearing impaired hard of hearing late deafened and oral deaf Hearing Loss Web provides information on events issues medical topics resources technology and they have a Discussion Forum www hearinglossweb com Meniere s Discussion Group Menieres org was founded to provide a home of support for those of you who are suffering from Me niere s Disease www menieres org COCHLEAR IMPLANT DISCUSSION SITES Cochlea
3. Even a mild hearing loss can cause communication problems as we go about our daily lives A hearing loss makes it more diffi cult to learn new vocabulary and new language concepts and is a particularly difficult loss for children The emotional impact can be greater if the hearing loss begins later in life A hearing loss makes it difficult to participate in meetings hear on the phone and com municate 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 HLAA 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 al
4. Internet Listserves Internet lists are another way of getting opin ions about particular brands Keep in mind that there is great brand loyalty and nobody has the same experience with more than one brand few have had 2 different brands implanted and most of these find that the experience differs very little Where there is a difference in outcome there are other variables beyond brand different nerve quality different times of implantation and so on CHOOSING A SURGEON Your insurance may dictate which surgeon you need to use to get coverage Although Medicare covers much of the cost of implanta tion not all surgeons or hospitals accept Medicare But if you have a choice of surgeons you can find out which has had the most or sig nificant experience implanting the device you have chosen Some surgeons may have a preference for a particular brand because of their training or the outcomes they have observed This information may be enough for you to make the final decision regarding both the device and surgeon you use OTHER THINGS TO KEEP IN MIND e You may have to go out of your area to be implanted in a particu lar Cl center only to find out afterwards that there are no audi ologists in the area where you live that have the equipment or experience to program the device which you chose As a result you will be forced to travel farther than expected for mapping and programming but try not to let the inconvenience of travel keep
5. e an amplified try it first because not all of them will work for you or captioned phone e an FM or loop system for meeting rooms e a work area that is as free as possible from background noise For information about your rights in the work place and guidance in filing a complaint see the section on ADVOCACY THE ADA THE FCC amp YOU In Medical Settings In hospitals or outpatient surgery whether you are a patient visi tor or employee in a medical setting you can request a captioned or amplified phone captioned TV programming TTY visual alerts for the phone ring door knock and smoke alarm CART real time captioning 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 as all are covered under the Americans with Disabilities Act ADA Because it involves your health it is very important for you to ex plain your hearing loss to doctors and other staff Don t assume that if you tell one person everybody will know Don t wait to be asked if you are hard of hearing tell them Here are a few tips to improve communication in medical settings 54 IN THE HOSPITAL Use your pre admission visit to discuss what your hearing loss needs will be during hospitalization and to discuss any special notes or stickers to be used to alert staff to your hearing loss A Communica tions Access Symbol
6. ing to you e Use humor Lighten up If the other person had the hearing loss and you did not would you always remember to help Be patient with others and with yourself If you take things personally every one loses e Wear your hearing aid It does no good in your jewelry box or sock drawer e Use Assistive Listening Devices ALDs See the chapter on Hear ing Assistive Technology for examples Keep batteries handy so you Can replace one that goes dead e Use e mail a fax an 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 e And be sure to explain to family and friends that this is not just YOUR hearing loss it is OUR communication problem and they have to deal with it too Everyone needs to work together to make it easier for the hard of hearing person to understand and for com munication to be clear 48 PERSONAL TECHNICAL SOLUTIONS Personal Technical Solutions to help with understanding speech are becoming more and more available and too numerous to list here in detail Whether the method used to transmit the
7. nity at large 3710 SW U S Veterans Hospital Road NCRAR VA Medical Center P5 NCRAR Portland OR 97239 Phone 503 220 8262 x54525 Fax 503 273 5021 Email ncrar va gov Website www ncrar research va gov Office of Vocational Rehabilitation Services OVRS State of Oregon works with people with disabilities to find employment op portunities obtain training as needed to become employable and in helping them overcome obstacles in the work place Phone numbers are listed under State of Oregon Vocational Rehabilitation Divi sion throughout Oregon 500 Summer St NE E 87 Salem OR 97301 Phone 877 277 0513 503 945 5880 503 947 5010 FAX E mail vr info state or us Website www oregon gov dhs vr Oregon Court Reporters Association is a professional association of court reporters employed in the fields of judicial reporting broad cast captioning and communications access realtime translation CART Resource information is available at www orcra org and at HearinglossOR org 1219 SW 18th Ave Portland OR 97205 E mail contact orcra org Oregon Deaf and Hard of Hearing Service QDHHS provides information and referral sources on deafness and hearing loss issues Training on deaf awareness and sensitivity and how to communi cate with those with hearing loss For information write 500 Summer St NE E 16 Salem OR 97301 Phone 503 947 5183 voice 800 521 9615 voice or TTY 503 947 5184 FAX E Mail odhhs in
8. In diagnostic or treatment radiology if you re lying on a dark flat surface tell the technician you are hard of hearing and will not be able to speech read instructions in the dark Have them flash a light on and off when you should exhale and inhale For some diagnostic radiology procedures of the head or brain it is usually OK to keep your hearing aids on However please note that MRI s are generally NOT OK for cochlear implant users and the internal parts will likely need to be removed prior to the MRI See the information provided in the earlier In the Hospital section Before eye surgery talk with Since 1977 Dogs for the Deaf has been the surgeon about what you rescuing dogs from animal will and will not be able to do f shelters and professionally after surgery This is especially pr Mian to assist people who need them Important if you are also rely l Oscar winning Actress Marlee Matlin ing on your vision to assist with hearing speech H Dogs for the Deaf Rescuing dogs and Helping People Since 1977 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 Use a personal FM Dogs for the Deaf system See through face masks can help are now also available ask your doctor dentist to use them Make arrangements before the Could you or someone you know bene
9. in your area and you may want to go farther afield to find a surgeon who has the most experience with that brand Because the sequence of these decisions is dependent upon personal and local factors they are not presented in any particular order CHOOSING A COCHLEAR IMPLANT BRAND There are a number of information sources that can be used to help with the Cl brand decision e People who have an implant e HLAA chapters are a great place to learn about others experi ences e The three current CI manufacturers available in the U S also have a panel of consumers who will consult with you and can be reached at Advanced Bionics www advancedbionics com telephone 877 829 0026 Cochlear Americas www cochlear com telephone 800 483 3123 Med El www medel com telephone 888 633 3524 The manufacturers websites listed above are sources of informa tion for their brand of Cl e Comparative Information While manufacturers websites provide 30 basic information about their brand they don t always provide the information you need to compare brands There are some web sites that do provide comparisons that will be easily found using a search engine among them http cochlearimplantonline com Your CI Audiologist The Cl trained audiologist that you used to qualify for implantation should have demonstration models of the three manufacturers devices to try for fit and be able to point out the different features of each brand
10. patience Some people react differently Your age the severity of your hearing loss and your acceptance of the need for a hearing device may strongly influence your reaction to hearing with ampli fied sound Adjusting also requires practice and an application of common sense Do not expect perfection People often think they can put on the devices walk out of the office and hear perfectly again The reality is that once you ve gotten your device your work has just begun Here are some tips for adjusting e Take advantage of hearing rehabilitation programs offered by the major hearing device manufacturers Programs can be accessed or ordered from websites These programs help you with speech discrimination music appreciation and hearing on the telephone e Use the hearing device first in your own home environment Your hearing device amplifies noise as well as music or speech You may be disturbed temporarily by background noise Concen trate 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 clink of the dishes or the slam of doors these noises will tend to be less annoying and distracting to you e Get used to manipulating your devices by inserting and remov ing them changing the battery adjusting the controls etc in the relaxing environment of your own home e Accustom yourse
11. ADA is to prohibit discrimination in em ployment Title I ensure equal access to services of state and local governments Title II and ensure equal access to places of public 62 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 assur ance 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 communications If you have questions about the ADA and how it can impact your situation see http www ada gov or contact t
12. DVD or at live events by a CART operator real time captioning In some environments like athletic stadiums where few hard of hearing individuals can under stand announcements everyone benefits All of this is very helpful because you can read the words while you listen As they move to digital projection movie theaters are providing closed optional captions using a small screen rear window dis play or special glasses to translate voice to text Captions can be accessed with all televisions when the video has captions built in Subtitles are a form of open visible to all captions in movies espe cially foreign and educational films A few days before an event ask if captions have been scheduled if not request them The ADA requires that reasonable accommoda tions be provided Internet video content must be accessible captioned to people who are hard of hearing However there is no requirement that the captions be accurate and especially when automatic captioning is used the inaccuracy of the captions is often frustrating and at times amusing Special Settings Special Coping Skills In The Workplace All the feelings and difficulties hard of hearing people face are ac centuated 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 compe tition in the workplace performance or thre
13. a break in the tubing e Is there wax buildup in the ear canal e Is there a crack in the hearing aid casing e Could there be fluid behind the eardrum e Has your hearing changed so that you are increasing volume to compensate 24 MY AID SOUNDS TINNY e Too many high frequencies are being amplified e Ask your audiologist or hearing care provider about compression and reprogramming your hearing device I M TALKING IN A BARREL e There may be too many low frequencies amplified e There might be too little venting in the ear mold e The ear mold may fit too deeply or be obstructed THERE IS TOO MUCH BACKGROUND NOISE e Background noise makes hearing difficult for most people It is one of the most difficult problems for people who are hard of hearing yet hearing aids often seem to make noisy situations worse e Try turning the volume down so the hearing aid is not amplifying the background so much or you can use the directional micro phone and noise program option on your hearing aid if you have them You can also try moving closer to the speaker e Use an assistive listening device such as an FM system or a per sonal listening assistant to transmit the desired sound to your ears via an ear bud or directly into your hearing aid via the telecoil Often a directional microphone works best in noise and the car e Programmable hearing aids often offer features such as multiple microphones or a separate program t
14. a drying agent desiccant Remove the bat tery 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 new ones are easily installed by your hearing care provider Hair spray clogs micro phone openings and discolors the shell casings Turn the instrument off when it is not being used If it is not used for a few days remove the batteries and store them separately Disposable batteries need to be replaced fairly frequently because they function constantly and must power the hearing device s circuitry and microphone You can use a battery checker avail able from most hearing hearing care providers to see if you need to change the battery Many hearing devices now give warning beeps that only you can hear to let you know that the battery is low and needs changing Always open the battery cover at night to allow moisture to evaporate and prevent battery power drain Keep batter ies handy so you can replace one that goes dead Pro Sound amp Video www prosoundandvideo net 541 485 5252 7 Live Captions for Events Performances and Meetings Design and installation of hearing loops N gt d CAPTIONS Ae FM and infrared assistive listening systems Serving worship government education gt We ve got you covered and corporate markets 541 345 6168 CCCaptions com 439 W 11th Ave E
15. behind the ear BTE style which is worn behind the ear and connected to a soft ear mold that fits into the outer ear The ear mold can either be open or at the other extreme completely closed to provide for more power without feedback Within this range there are other styles and there are variations of these styles that offer even more user options The contrasts in function between CIC and BTE aids tell something about the functional capabilities within the range as well Because of their size and location in the ear canal CIC aids are the least vis ible are less affected by wind noise and make telephone use less awkward At the same time because of their small size and loca tion CIC aids have few if any programming options less power and user controls cannot accommodate a telecoil see the earlier information on telecoils and are generally considered appropriate for milder hearing loss A BTE aid has the greatest amount of flexibility for fitting and for more functions like directional microphones programming op tions like noise reduction and often has external controls to change listening programs and volume without removing the aid BTE aids and their variations are generally used with losses from moderate to profound Most of the BTE aids will be equipped with t coils and those are often stronger and therefore are compatible with assistive listening devices making them an attractive choice for many listen ing situations The ear
16. do bilateral cochlear implants The second implant can provide better hearing in noisy environments enhance sound quality and improve ability to localize sounds Some also note that the quality of music is better and gives a stereo effect The bilateral implant is used primarily when a hearing aid is no longer effective for the non implanted ear The Food and Drug Administration s FDA criteria for cochlear implants have changed over the years and will continue to change as implant and implantation improvements are made At press time current criteria for cochlear implantation are as follows e People age 2 years and older with severe to profound deafness i e pure tone average thresholds of 70 dB HL or greater and e Children 12 to 23 months of age with profound deafness i e 28 pure tone average thresholds of 90 dB HL or greater e Whenever possible outcomes from word and sentence recogni tion testing are also used to determine candidacy Current guide lines permit implantation in adults with open set sentence recog nition scores of approximately 50 to 60 words correct As cochlear implant devices continue to improve the criteria re garding the degree of hearing loss and the performance with a hear ing aid that warrants consideration of a cochlear implant also will continue to evolve Medicare criteria are a bit more restrictive than the FDA If you are Medicare eligible the clinic can help you understand the diff
17. go hand in hand Emily Kimbrough 60 Driver s Information The information below can be copied and carried in your vehicle for example keep it on your visor so it is readily accessible Check all areas that are applicable Also in order to let people know that they need to communicate differently with you because you are hard of hearing you might consider printing the card below and putting it next to your driver s license for easy retrieval am not able to hear well and I may not be able to communicate effectively in all situations _ 1 use speechreading to communicate Please do not shine a light in my eyes or cover your mouth with your hand Please face me and speak clearly Please speak slowly shouting does not help Please write notes if necessary Please have your dispatcher send a sign language interpreter 61 Advocacy the ADA The FCC and You ADVOCACY AND YOU The ADA Americans with Disabilities Act and the CVAA Com munications and Video Accessibility Act give a legal and regulatory basis for obtaining many accommodations for people who are hard of hearing and deaf And while there is at times voluntary compli ance with them often you as a hard of hearing or deaf person must ask for those services or devices For example hotels motels must provide visual smoke alarms door knock alerting devices and visual telephone alerting devices but even if you r
18. in deci bels dB on the vertical dimension Loudness of 0 is the average of the faintest sound heard by a person with normal hearing not the absence of sound so a horizontal line from the O would represent so called normal hearing across all frequencies Letters in the shaded area of this graph show the pitch and loudness where individual speech sounds are normally heard If your loss lies FREQUENCY IN HERTZ Normal Mild m O Z 2 Moderate U Z Lu Z Severe Profound 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 7 below a portion of the shaded area the sounds of the letters that are missed will define those sounds you will have difficulty discriminat ing The consonant sounds needed to make fine speech discrimina tion are in the upper right soft high frequency portion of the graph the area where most hearing loss initially occurs and that is why speech discrimination is often the first thing that is noticed as high frequency hearing loss the most common form develops Audiologists use this chart to map out the softest level at which you can hear each frequency the result is your audiogram For more details and further information check out the article The Audiogram by Mark Ross PhD in the May June 2004 issue of the HLAA magazine available at www hearinglo
19. mold can be easily changed and changing batteries and inserting and removing the aid may be easier Hearing Aid Features Hearing aids can have a number of important features and program ming will fine tune these features to deal with very specific prob lems and lifestyle needs Programming Modern hearing aids are basically tiny comput 20 ers that use a computer chip to provide features and programming capability used to modify the sound information to fit your specific hearing loss Through programming the hearing aid is capable of selecting certain sounds to be more or less prominent depending on the user s needs and preferences suppress feedback automati cally control volume and use directional microphones to make the desired sound like the speaker s voice more prominent Because sound quality and noise change over time and in differ ent settings many programmable hearing aids also have different programs that can be used for example in noisy environments like air conditioning extraneous voices and traffic noises While these adjustments can occur automatically manual controls are still help ful for example with volume A hearing aid has channels and bands Channels refer to the number of divisions of the frequency spectrum that are processed more or less independently by the hearing aid Bands are used to adjust the hearing aid s amplification characteristics and for fine tuning the hearing aid to address t
20. or 800 735 2900 24 Espa ol a Espa ol relay user 800 735 3896 The relay operator relays the other caller s Espa ol a Ingl s spoken words by typing them to the relay user 800 359 2703 Can t hear on the phone Captioned Telephone Relay Service Just read the captions la y For more information W www oregonrelay com OREGON www oregoncaptel com CapTel is a registered trademark of Ultratec Inc Hearing Loss Y Association of America Oregon State Association PO Box 22501 Eugene Oregon 97402 Phone 541 689 7242 voice E mail info HearingLossOR org www hearinglossor org
21. or Systems Many types of assistive devices are available to an individual to enhance understanding in noisy environments Personal FM systems are great for understanding a speaker who wears a microphone and FM transmitter while the listener has the receiver fitted with headphones earbuds or a neck loop Other devices transmit the speaker s voice to the hearing device using Bluetooth technology Many brands of hearing aids offer streamers which are worn around the neck and communi cate with the hearing aid via Bluetooth or electromagnetic energy and allow you to control sound volume and quality from the TV telephone or companions 38 e TV listening systems These are another personal listening device that give the user control of the volume and perhaps tone of sound from TV radio or stereo When using a listening system the hard of hearing person does not need to turn up the volume which makes others with little or no hearing loss uncomfortable There are also hearing loops that can be placed in a room or un der a cushion on your seat and connected wirelessly or wired to your TV or stereo Signaling or Alerting Devices Besides ALDs there are other catego ries of hearing assistive technology that substitute a visual signal for sound so that a ringing telephone smoke or CO2 alarm burglar alarm alarm clock baby alarm or a door knock can use a flashing strobe light to get your attention These devices accomplish more than mak
22. or us e A Consumer Checklist for Purchasing a Hearing Aid can be obtained through your local HLAA chapter or online at www hearingloss org under Support Order Materials A Word about Telecoils and Why They Are Important A telecoil t coil T switch is a very small coil of wire within the hearing aid that functions as an antenna when it is activated and picks up sound that is being broadcast as a magnetic signal This will allow you to take advantage of a variety of devices that will help you build on the strengths of your hearing aid or Cl and goa long way to solving some problems that hearing aids or Cls alone don t solve The main problems they help with are hearing on the telephone using a range of assistive listening devices ALDs and hearing the desired voice s in a large or noisy room When you activate your telecoils by moving a switch or pressing a button on your hearing device or on a remote control the sound transmitted from your phone or your assistive listening device is am plified and background noise is significantly reduced or eliminated In addition with a telecoil in your hearing aid or Cl you can take advantage of the assistive listening systems installed in many pub lic facilities without first having to remove your hearing aid to use headphones or ear buds which may not work for any but the mildest hearing losses Telecoils can be viewed as the foundation for getting results beyond those of your hearing de
23. screen A white board and or handouts are helpful A well lighted room without shadows and minimal facial hair around the mouth is helpful for speech reading When eating out ask for a quiet room booth or table along a wall to have distracting sounds coming mostly from the your front and away from the dishes and the door to reduce that source of noise and explain why to the hostess or host before asking for a table Be sure you are not next to a large party of people Eat in off peak times and avoid places with live entertainment If the public speaker did a good job addressing your hearing needs thank the person after the presentation It will inspire speakers to be more aware of the needs of hard of hearing people at their next presentation Maintain a sense of humor 50 HINTS FOR PUBLIC SPEAKERS e Face the audience when speaking not the screen or chalkboard e Learn to consistently condense and repeat audience questions and comments e Speak up and consistently hold the microphone close but do not cover the mouth e Adjust the height of the microphone stem to maximize effective usage and to accommodate variations in speaker height HELPFUL TECHNOLOGY IN PUBLIC MEETINGS Installed Assistive Listening Systems are available at an increasing number of performance centers lecture halls information booths houses of worship and even buses With installed systems personal listening devices with the possible exception o
24. someone who uses a standard telephone and vice versa You can also request a TTY as a free loaner phone from the State of Oregon s Telecommunication Devices Access Program TDAP if you qualify Because of their effectiveness ease of use and increasing accuracy captioned phones are gaining in popularity These phones function like regular phones but besides hearing the caller s voice and you can use your telecoil and amplify the speaker s voice the caller s words are displayed on a screen for you to read At least two captioned phones are available to make and receive captioned calls If you qualify one phone is loaned free from the State of Oregon s Telecommunication Devices Access Program TDAP or you can purchase one from a vendor These captioned phones usually require that you have a telephone land line and an internet connection Other options available to you are VCO voice carry over tele phones that function somewhat similarly to the captioned phone There are also a variety of internet relay services where you can log onto your computer to connect to the relay service which displays word for word captioning on your computer screen and using your cell phone allows you to speak and hear the caller This service is provided by several carriers In order to use an internet relay service you need to have cellular phone service and of course a computer Other communication options using your computer or cell phone are
25. sticker is an immediate easily recognizable indication of your hearing loss See www hearinglosslane org how to make your own hospital kit for these stickers and also a selection of helpful information and samples on how to make your own hospital kit e Advise hospital staff of your preferred methods of communication speech reading written am plification captions sign language or a combination of these e Inform all medical personnel and stress that it should be promi nently displayed in your chart that you have a cochlear implant if there is the possibility of an MRI which involves strong magnetic energy While some Cl brands are FDA approved for low power MRIs others cannot have an MRI without removing the implant An individual with a BAHA a bone anchored implant with a titanium post can have an MRI as long as the sound processor is removed for the procedure It is important that you find out from the manufacturer of your implant whether or not an MRI is advised and if so at what level You should carry a card with that information with your other medical cards to inform all medical personnel Make sure your doctor anesthesiologist and surgeon are aware of your hearing loss inquire about any procedure or medication that might negatively affect your hearing Ask them to give you instruc tions before they put on their masks as you will not be able to un derstand anyone wearing a surgical mask Ask to view captione
26. technology and telecoils as they are used by people with hearing loss OREGON HEALTH amp SCIENCE UNIVERSITY Department of Otolaryngology Head amp Neck Surgery HEARING SERVICES Cochlear Implants Vestibular Testing Hearing Aids Assistive Listening Devices Hearing Screening Research and Education Baha Implants Aural Rehabilitation HEARING VESTIBULAR AND 503 494 5171 COCHLEAR IMPLANT SERVICES Timothy Hullar MD 503 494 8135 Anh T Nguyen Huynh MD PhD Sarah M Liebler MS PA C Cochlear Implant Staff Audiology Staff Jillian Becker AUD CCC A Amy L Johnson AuD CCC A Jessica Eggleston AuD CCC A Jennifer J Lane AuD CCC A Jennifer Fowler AuD CCC A Devon M Paldi AuD CCC A Carrie Lakin AUD CCC A Jessica Middaugh AuD Vestibular Staff Jessica L Van Auken MA CCC A Marco Jurado AuD FAAA Cochlear ohsu edu www ohsu edu ent 74 Suggested Reading Non Fiction Books Bouton Katherine 2013 Shouting Won t Help Why I and 50 Mil lion Other Americans Can t Hear You NY NY Farrar Straus and Giroux Douek Ellis 2014 Overcoming Deafness The Story of Hearing and Language London Imperial College Press Hammond Monique 2012 What Did You Say An Unexpected Journey Into the World of Hearing Loss Minneapolis MN Two Harbors Press Kisor Henry 1990 2010 What s That Pig Outdoors A Memoir of Deafness New York Penguin Books 1990 First University of Il linois Press Paperbac
27. working for some time with a certified dispenser and passing a test about hearing aids Generic term that includes audiologists special ists and dispensers Similar to a Hearing Aid Dispenser Selects and fits hearing aids for customers administers and interprets hearing tests assesses hearing instru ment efficacy Hard of Hearing A loop of cable around a designated area usually a room which translates sound into a magnetic signal that is picked up by a hearing aid or Cl equipped with a telecoil In The Canal one class of hearing aid In The Ear one class of hearing aid See IL Captions displayed without needing activation always visible 78 Personal Listening Systems Realtime Captioning Relay System Signaling Device TDD TT TTY Telecoil VCO Voice Carry Over Device that helps one HOH person differs from an ALS that helps more people SEE CART A telephone service that allows persons with hearing or speech disabilities to place and receive telephone calls with the help of an offsite opera tor A type of HAT also called alerting device de vices and systems that help deaf and HOH people to become aware of environmental noises like from smoke alarms Telecommunication Device for the Deaf also called Text Telephone or TeleTypewriter used for phone communication A small coil of wire inside a hearing aid or CI that is designed to pick up a magnetic signal When using the
28. A OR s statewide newsletter Name Phone Organization Name Address City State Zip E Mail _ Please check if you would like to receive the newsletter via e mail learned about the newsletter from _ Enclosed is my contribution of to support HLA OR s outreach programs in Oregon Contribution will be acknowledged in the next newsletter issue _ Please check if you would like to remain anonymous C cannot contribute but would like to receive the newsletter _ Please send me ____ copies of this book Facing the Challenge of Hearing Loss A Survivor s Manual at 4 per copy or 35 for 20 copies O My check is enclosed O Please send me an invoice Please send this form and your donation to support our efforts to Hearing Loss Association of America Oregon HLAA OR P O Box 22501 Eugene OR 97402 Hearing Loss fe Association of America Please consider becoming a member of our national association HLAA It is easy inexpensive and rewarding HLAA membership brings you e Hearing Loss Magazine HLAA s bi monthly publication containing the latest information on technology legislation and coping with hearing loss e access to the HLAA information and resource center e active advocacy and representation on the national level e discounts to the HLAA annual convention held in different locations reaching out to everyone with a hearing loss and their friends families and co workers e automa
29. AA OR PO Box 22501 Eugene OR 97402 info hearinglossOR org THE OREGON HEARING SOCIETY http www oregonhearingsociety org The Oregon Hearing Society proudly supports the Hearing Loss Association of America Oregon State Association and the Survivor s Manual II TABLE OF CONTENTS STATISTICS AND INFORMATION ON HEARING LOSS Dio bolt ON gene eer E rte ene err ees ee teen T 1 Do You Have a Hearing LOSS ses torrets ee tesreseme teeter nt eee 2 Causes and Related Problems of Hearing LOSS eeeeeeeeeteneeeees 3 Understanding Your AUC OBTAIN v sacecencunetucidensnenisnencnntenddbatnearacevaupnacaess 7 How We Perceive gt OUIG ariris ienen EAA a A E E 8 What are the Results of a Hearing LOSS cccssccesssseessseesseeeeeeeeens 10 Don t Hide Yo r Hearing LOSS a carceresstenoasetcncseetaenancteeetnemasoenonaneenns 11 THE EMOTIONAL SIDE OF HEARING LOSS Frustration and Other EMOtIONS sasexvecd cosnnenceccnsnsmentontereseceecgeoeveionetennnins 12 TVS saree ers terete eee E N E E E E EAN 13 Confronting Your Hearing LOSS secceaiccencandendenssnessutunotsasseeeesaatedonteniess 14 HEARING AIDS COCHLEAR IMPLANTS OTHER SYSTEMS AND YOU Choosing a Hearing Care Provider ccccssccesssssessseesseeseeetteeeeeenes 16 A Word About Telecoils and Why They are Important 0006 18 Hearing Aid Styles and Features 0 cccccccccsssccsncsensccccccesesescceseceseeees 19 Choosing You
30. Fac ng the Challenge of Hearing Loss A SURVIVOR S MANUAL COMPILED BY THE Hearing Loss Association of America Oregon State Association isn t about age it s about relationships Communicating with the people you love is important and a hearing loss does not need to change the way you connect with the world around you Hearing loss can occur at any age In fact today in the United States nearly 40 million people have reported having hearing loss Salem Audiology Clinic s family based business approach has always been to help the hearing impaired with the same kindness we would want your own loved ones to experience For hearing aids our audiologists are trained in the latest technoilogy and give honest answers in regards to recommendations Our team will work directly with you for as long as it takes to find appropriate solutions to your unique hearing needs Call 503 588 1039 today for a free demonstration of the latest hearing amplification technology Salem Audiology Clinic Inc 3857 Wolverine St NE 16C Salem OR 97305 Facing the Challenge of Hearing Loss A Survivor s Manual revised COMPILED BY Hearing Loss Association of America Oregon State Association HLAA OR www hearinglossOR org Our cover shows people of different ages and ethnicity who have a hearing loss to represent the fact that hearing loss can affect people irrespective of any of these factors Hearing loss affects
31. HLAA Mention of products and services does not mean endorsement nor should exclusion indicate disapproval Archer Captioning Realtime Captioning CART When to use CART Business Meetings Classrooms Courtrooms Religious Services Conferences Conventions Doctor Appointments Medical Settings Government Functions Weddings Funerals Broadway Shows Theater Anywhere communication access 1s needed CART Communication Access Realtime Translation Word for word Speech to text Interpreting service that benefits people who are late deafened oral deaf and hard of hearing CART empowers consumers to decide for themselves what spoken information 1s important to them Services are provided On Line On Site On Demand For information and scheduling contact Elizabeth Archer ArcherCaptioning gmail com 503 319 0122 VI Statistics and Information About Hearing Loss Did You Know Approximately 48 million adults in the United States report some degree of hearing loss Hearing loss is a major public health issue that is the third most common physical condition after arthritis and heart disease In the United States three out of every 1 000 children are born hard of hearing or deaf Nine out of ten are born to hearing parents In adults the most common causes of hearing loss are noise and aging Noise induced hearing loss may happen slowly over time or suddenly This is usually caused by exposure to loud
32. Meeting Places Accessible Imagine attending a public meeting and not being able to hear what the presenter or other participants are saying Public gatherings and meetings can be very frustrating for people who wear hearing aids or cochlear implants When people cannot hear in large meetings or presentations they often decide to stay home and not attend or 49 participate and then they feel left out This should not be the case because affordable practices and technology exist to make public spaces user friendly for the hard of hearing GENERAL TIPS Many of the coping skills suggestions and technological tools described earlier are also very helpful in public meeting places In addition for large public meetings the following are very helpful Padded seating carpeting and drapes all help with acoustics Seating arrangements are crucial to facilitate speech reading bonding and audience participation The hard of hearing person should sit close to the presenter or leader in order to hear better and see the faces of those speaking Too much distance from the speaker makes it hard to hear or lip read In meetings a quiet room with small groups where you can be seated around a table or in a half moon style is helpful For a little larger group try for a V shape with the presenter at the tip An outline of the lesson or presentation or words to songs can be loaded on a computer prior to delivery and then projected on a large
33. ack or let others try to tell you that your decision is wrong You have made the decision that is best for you NOTE Some of the above information has been adapted from Making the Choice a post by listowner Alice Adams on CI Hear BAHA AND HYBRID SYSTEMS There are two other types of hearing device system technologies on the market Bone anchored hearing aids BAHA and hybrid systems BAHAs are used when the cochlea is healthy They work by us ing bone conduction to bypass the damaged outer and middle ear sending sound directly to your healthy inner ear The Hybrid system developed by one manufacturer combines ear 32 acoustic amplification via a hearing aid to improve the low frequen cy hearing while also using a cochlear implant to provide the high frequency hearing that is missing Together these two technologies give a more complete hearing experience than either together Both these technologies require specific remaining hearing capabilities Two Aids or Cls Or a Cl and an Aid Are Often Better Than One For many people it is beneficial to wear two hearing devices Con sider e The clarity and accuracy of the message will be optimized by the brain e Optimum hearing and processing of information occurs when we use both ears and the brain between them Using two hearing de vices provides greater efficiency and clarity than just one aid be cause the brain needs less volume for understanding This makes
34. ander Graham Bell Association has as its mission to promote early identification of hearing loss and to encourage individuals who are deaf or hard of hearing to learn to speak speechread and use their residual hearing to communicate For information write 3417 Volta Place NW Washington DC 20007 66 Phone 202 337 5220 voice E Mail info agbell org Web page www agbell org American Association of the Deaf Blind AADB AADB is a nation al consumer organization of by and for deaf blind Americans and their supporters Deaf Blind includes all types and degrees of dual vision and hearing loss For information write P O Box 8064 Silver Spring MD 20907 8064 Phone 301 495 4403 voice Video Phone 301 563 9064 commu nication via American Sign Language Interpreter E mail aadb info aadb org Web page www aadb org American Tinnitus Association provides information referrals and support for people who experience tinnitus ringing in the ears and head noises For information write PO Box 5 Portland OR 97207 0005 Phone 800 634 8978 or 503 0248 9985 503 248 0024 FAX E mail tinnitus ata org Web page www ata org Association of Late Deafened Adults ALDA supports empower ment of people who are deafened Provides resources and informa tion and promotes advocacy and awareness of the needs of deaf ened adults For information write 8038 Macintosh Lane Suite 2 Rockford IL 61107 5335 Phone 815 332 1515 E ma
35. aptioning The captioner while listening to the speaker or performer uses a 39 stenographic machine which is connected to a computer which in turn translates the stenotype shorthand into English The translation is then displayed as captions on a computer monitor TV screen or large wall screen In that way hard of hearing people can read the captions and enjoy live performances Realtime captioning can be used in any situation where verbal communication is needed Some examples where realtime caption ing is used are group meetings athletic events legislative hearings lectures workshops classroom settings court proceedings advisory councils and board meetings Telephone calls can be captioned as well These special telephones operate just like a regular phone in that you can hear the caller s voice and also talk into the receiver but the caller s side of the con versation is translated to text that is visible on a small screen Cap tioned telephones usually require a telephone landline service and an internet connection and are also available for a phone tablet and computer In Oregon amplified phones are available free on loan from the State of Oregon s Telecommunication Devices Access Program TDAP to qualified individuals see the Resource Directory for pro viders and vendors OTHER ACCOMMODATIONS E mail is a wonderful communication tool especially for those of us who are hard of hearing It requires a
36. ats to our performance can become an even more crucial measure to us of our value Because of the importance of performance in the workplace denial can be a powerful temptation A hard of hearing person might avoid wearing hearing aids in order to hide a flaw which we fear could be interpreted as weakness or incompetence We might be afraid that hearing aids make us look older than we d like and age dis crimination can and does occur in the workplace Yet the mistakes and misunderstandings that occur when we don t acknowledge our 52 hearing loss really do threaten our ability to perform effectively and therefore to hold a job Even with hearing aids or Cls it is important for you and those you work with to know that your corrected hearing is aided and not normal You may not be able to understand banter and rapid fire discussion because you can t follow the conversation from one per son to another or process their speech fast enough Without seeing each speaker s face as they speak you lose your ability to speech read Even noise from a heater air conditioning duct or copier may mask the speech you need to hear Unless you let your co workers know your needs they may think you are aloof unmotivated or even slow or easily confused 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 you
37. ch 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 You won t always understand everything that is said but don t bluff 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 but ask Who were you talk ing 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 or 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 is a slight delay while your brain processes 47 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 informa tion received e 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 e Thank speakers for helping you If you always complain that they don t remember your needs and they won t they will avoid talk
38. cide to buy And don t forget there are a number of assistive devices like powered neck loops even neck loops with Bluetooth wireless to help you hear optimally on your cell phone Smartphones are increasingly offering applications to provide captioned calls so if captions are likely to make a difference to you See what applications are available when you are ready to buy and consider that feature along with the M and T ratings It takes some effort to select the phone that will work best for you but that effort is well worth it Sometimes our light goes out but then is blown into flame by an encounter with another human be ing Each of us owes the deepest thanks to those who have rekindled this inner light and to remember that we can be the light for another Albert Schweitzer 44 General Coping Skills and How Technology Can Help You Those of us with hearing loss sometimes forget how difficult it is for others to understand our hearing loss or 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 the conversation that they don t think about how it s coming across to us We think they re mumbling they think we re not paying atten tion We think they re talking too fast they think we re really slow on the uptake We notice
39. computer with an internet connection but one does not have to be very computer literate to use it When using the phone is difficult e mail is a great way to keep in touch Amplified Telephones and Telephone Amplifiers There are small amplifying devices available that are attached to a corded phone and have adjustable volume and in some cases tone control In addition special amplified phones are available through some of the vendors listed below In Oregon amplified phones are available free on loan from the State of Oregon s Telecommunication Devices Access Program TDAP to qualified individuals 40 OTHER INFORMATION If you are considering assistive listening technology check with your hearing care provider and other vendors who specialize in this type of technology for help in determining which device is best for you You can also contact HLAA for more information www hearingloss org content hearing assistive technology An excellent presentation of assistive listening technology can be found at www wou edu education sped wrocc demyst_files frame htm Catalogs or webpages for vendors are a great way to find out about different options that might help you A sampling of hearing assistive device sources is listed below Additional vendors can be found at www wou edu wrocc GENERAL TECHNOLOGIES 3806 Security Park Drive Rancho Cordova CA 95742 Phone 800 328 6684 email devices4less hotmail com website www devices4le
40. d videos if the procedure s are explained to you with the use of a video It is important that you understand how the procedure will work because you will be asked to sign an Informed Consent form which indicates you were told of the process given instructions and all the risks involved 55 e Learn the policies concerning retaining your hearing aids during surgery or procedures You may be able to keep them if you ex plain their importance You may be asked to sign a waiver absolv ing the hospital in case of loss If the aids or cochlear implant are to be removed determine where they will be kept and when you will regain use of them Make it clear if you prefer to have your hearing devices on at all times If necessary place your hearing devices in a zippered plastic bag that is attached to your medical chart The chart stays with you from surgery and recovery until you can wear them again Advise nurses and other hospital staff at the nurses station that you will not understand public address announcements or com ments over the intercom Ask them to place a sticker on their intercom or an alert on the computer 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 sign on your IV pole or a sticker on your medical chart will be a good visual reminder e Be sure you clearly understand any medication inst
41. d create 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 This creates an electrical current which stimulates the hearing nerve to carry the signal to the brain The brain interprets this signal as sound If the hair cells are damaged or diminished the ability to initiate the electrical impulses to the auditory nerve is affected and the message to the brain is not clear or not carried at all Hearing aids often may help those who still have some healthy hair cells but for those with a severe to profound hearing and hair cell loss and 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 hard of hearing or deaf to perceive sound 9 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 to perceive what they were thinking and feeling as well
42. d from one or both parents who may or may not have a loss of hearing themselves There are about 200 different types of genetic hearing loss MEDICAL CONDITIONS RELATED TO HEARING LOSS Acoustic Neuroma A non cancerous but dangerous tumor devel oping 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 dif ferent types of surgeries to remove this kind of tumor but all usually result in substantial hearing loss or deafness in the impacted ear Autoimmune Inner Ear Disease AIIED or Autoimmune Sensori neural 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 im mune system produces antibodies which destroy inner ear cells and structures leading to hearing loss This may also be referred to as ImmuneMediated Sensorineural Hearing Loss SNHL Balance Difficulties If your inner ear or specific parts of 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 endo lymphatic hydrops and perilymph fistula Other disorders include acoustic neuromas and allerg
43. dations e 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 If necessary you can file a complaint with the US Department of Justice www justice gov crt complaint See also the next chapter on Advocacy for more information Accommodations in Adult Educational Settings When we consider continuing our education we often choose the institution based on cost location or a specific course of study If you are planning on attending a college or university and have a hearing loss be sure to talk with someone in the campus equivalent of the Office for Disability Services even if you initially think you might not need their services If you have difficulty identifying the office contact the campus Human Resources department and they should be able to direct you to the appropriate person The college environment is often a surprising challenge for those with hearing loss large rooms with many students create challeng ing listening environments group discussions may be difficult to follow if participants are seated behind you and instructors may 59 lecture for lengthy periods causing fatigue and eyestrain It is impor tant to seek accommodations for your hearing loss because you will be held responsible for and tested on information presented in class Some accommodations require some t
44. e takers and interpreters To contact or download an application Phone 314 371 0533 Website www tpahq org VETERANS ADMINISTRATION VA The VA offers hearing tests and hearing aids free of charge for most veterans To find the nearest VA facility check Website www oregon gov odva benefits 23 VOCATIONAL REHABILITATION If you are employed or seeking employment the State of Oregon s Vocational Rehabilitation may be able to help you obtain hearing aids and other assistive technology to help you keep your current job or become employable To find your nearest office check Phone 877 277 0513 E mail vr info state OR US Website www Oregon gov DHS vr OTHER RESOURCES Depending on where you live other programs may be available to you Check with your area aging agency in Oregon Aging and Disability Resource Connection of Oregon ADRC www adrcofore gon org Phone 855 673 2372 or your state assistive technology agency in Oregon Oregon Technology Access Program OTAP www otap oregon org Individual chapters of service groups such as Easter Seals Optimists Rotary and Quota International may also be able to offer assistance Help My Hearing Aid Has a Problem MY HEARING AID WHISTLES e How well does your ear mold fit If it is too loose the sound will leak out and feed back to the microphone Ears can gain or lose weight and the mold may no longer fit snugly and need to be remade e Is there moisture or
45. eed 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 frus trated and we experience a myriad of emotions How do we deal with those times and those feelings Unfortu nately 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 stages of grieving Mourning constitutes a 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 is usually 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 how 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 a stage
46. eople 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 more difficult to understand telephone con versations 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 embar rassed or avoid meeting new people because you may not know what they are saying or be frustrated because you believe 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 irritated at trying to make you understand Your ability to deal with your loss won t get better by itself You must take action to compensate for your loss A quiet word about your hearing We re very good listeners Brad Smith Au D Sandi Ybarra Au D Gail Leslie Au D Doctors of Audiology EUGENE 541 686 3505 401 East 10th Avenue Suite 110 FLORENCE 541 997 7617 1525 12th Street Suite 2 www hearingassociates net YWA oo AN HeariNG ASSOCIATES SW Hearing is believing Causes and Related Problems of Hearing Loss HEREDITARY HEARING LOSS Hereditary Hearing Loss may be inherite
47. equest them when you make a reservation often the person who checks you in may not get the message or know where those devices are It is up to the hard of hearing guest to know the requirements and advocate strongly for compliance and if warranted file the necessary complaint Self advocacy is also a part of day to day life Asking someone to speak slowly and to enunciate is a form of self advocacy as is re questing that a restaurant turn down or turn off music that interferes with your understanding of your companion For some asking for an accommodation is embarrassing perhaps because advocacy makes your hearing disability obvious to others Reluctance is a barrier worth surmounting getting needed accommodations allows you to enjoy your life more fully and helps insure your safety Remember you are not alone in advocating for your interests HLAA works at the national level and in Oregon HLAA OR advocates on behalf of hard of hearing individuals as do local HLAA chapters In Oregon a sister organization Oregon Communication Access Proj ect OR CAP www or cap org works with organizations to make their events accessible to hearing impaired individuals primarily through captions The National Association of the Deaf in Oregon Oregon Association of the Deaf is also an active advocacy group The Ada Americans With Disability Act and You The ADA is a Federal civil rights law for persons with disabilities The basic purpose of the
48. erences in criteria Each Cl manufacturer has guidelines for implantation of their unit If you do not qualify as an implant candidate you may want to check back with the clinic each year to see whether the criteria or your hearing has changed enough to qualify Contact the Cl manufacturers below They will also function as a resource for information on local clinics and doctors who evaluate and perform that surgery Advanced Bionics 28515 Westinghouse Place Valencia CA 91355 Customer Service 877 829 0026 Email info us advanced bionics com Cochlear Americas 13059 East Peakview Ave Centennial CO 80111 Customer Service 800 483 3123 Email customer cochlear com Med El 2511 Old Cornwallis Rd Suite 100 Durham NC 27713 Customer Service 888 633 3524 Email customerservice us medel com 29 Cochlear Implant Surgery Making Choices Once you have qualified for a Cl the next decisions will be choos ing a Cochlear Cl Implant brand choosing a surgeon and select ing the hospital where your surgery will take place These decisions can happen in any order and for different reasons for example there might be only one hospital within a reasonable distance from you and that could well dictate the selection of a surgeon or surgeons available to you Or it may be the case that a hospital or surgeon does not accept an insurance for example Medicare Similarly the Cl brand that you end up choosing may not be commonly implanted
49. etermine the best position for the telecoils A telecoil may add a small amount to the cost of your hearing aid but the benefits far outweigh the cost They are avail able in behind the ear and in the ear hearing aids but due to space limitations often are not avail able for the smaller hearing aids If you hear buzzing or hum m mm ming when your hearing aid pacificaudiologyclinic is on t coil it could be caused by electrical interference from fluorescent lights power lines l or your computer monitor Try Ny Allison moving your head or sitting or Bradley standing in a different place to do see if you can reduce the noise Alisa Weinzimer 5331 SW Macadam Ave Ste 395 Hearing Aid Styles Portland OR 97239 503 719 4208 There are different sizes and shapes of hearing aids to con 5010 NE 33rd Ave sider and you need to un Portland OR 97211 derstand the advantages and 503 284 1906 disadvantages of different styles Different styles differ in function eee a 19 as well as in appearance in fact smaller less noticeable hearing aids usually offer fewer programming options features user control and less power Therefore it is very important to select the style of hearing aid that best suits you and your lifestyle Styles range from completely in the canal CIC which are the small est and least visible of all types because they fit deep into the ear canal to in the ear ITE which are in the outer ear to the
50. everyone differently depending on age sudden ness of onset and a variety of other factors like life situations Loss of hearing can have an effect on our emotions like depression sadness frustration anger and grief These emotions come largely from the loss reduction or other difficulties in understanding verbal commu nication which is at the heart of living and interacting with others keeping up to date with what is happening in the world working and enjoying events where speech lyrics or sounds are involved Hearing loss brings challenges several times a day at meetings in work or school at social gatherings of any sort on the phone ina noisy crowd at games and concerts or even shopping At the same time hearing loss provides many opportunities to cope by changing behavior and using advanced technology Losing our ability to hear well has many implications for relation ships Poor hearing affects the hard of hearing person the hearing partner friends and co workers because all must adjust their com munication style to accommodate for the loss of auditory acuity The hard of hearing person may become frustrated at not being able to hear what is being said while people who hear well and are in volved in the communication will feel frustrated because communi cation styles that work among normally hearing people do not work when hard of hearing people are involved New communication skills are needed for both sides of the conversat
51. f a neck loop are not needed These systems can either be audio loops FM or infrared systems When the system is FM or infrared the venue will provide a receiver and earbuds headphones or sometimes a neck loop if you have a telecoil Earbuds require taking off your hearing device and there fore do not take advantage of hearing aid technology and therefore will not work well or at all for people who wear hearing aids or co chlear implants A very effective alternative is a neck loop for those with a telecoil in their hearing aid or Cl If your hearing device does not have a telecoil you can use a receiver with an earbud or head phones For some people wearing headphones carry the stigma associated with standing out and they may find that embarrassing but sometimes using your telecoil s with headphones work wonder fully If a listening system is not advertised or posted you need to be pro active and ask if one is available and if so suggest that a notice of availability be posted If one is not installed ask for one You are not the only one to need it Captions Many public meetings theater performances and sports events can be much more enjoyable and comprehensible for hard of hearing people when captions are provided They are a necessity 51 for those who do not understand speech well even with hearing devices and amplifications Captions translate speech to text either automatically at production of a movie or
52. fit from the the help of an assistance dog A s facebook You D www Dogsforthedeaf org 1 800 990 DOGS 3647 exam so that you are both able ELEM A A E OIE 57 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 you can 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 much more difficult Making our needs known is critical to making life easier in or out of a medi cal setting Courtroom Access Going to court is stressful for anyone but it is often far more trau matic for a person who has a hearing loss If you need some special aids or services when appearing in court in any role for example as a litigant witness or for jury duty you should make a written request to the court administrator as early as possible You can ask for an assistive listening system real time captioning or an inter preter to be available on the day time and place that you need these services Appropriate accommodations are you
53. fo state or us Web page www oregon gov dhs odhhs Oregon Department of Education ODE Regional Programs The ODE contracts with local agencies to provide a statewide system of free services for young children with developmental delays and dis abilities and their families This includes early intervention children 69 birth to three and early childhood special education ECSE for chil dren three to the age of public school eligibility and includes spe cially and individually designed instruction in the areas of physical speech language mobility social or emotional and other situations For information write 255 Capitol St NE Salem OR 97310 0203 Phone 503 947 5600 Fax 503 378 5156 E Mail ode frontdesk ode state or us Web Page www ode state or us Oregon Health Licensing Office HLO is a state department that deals with all health licenses and regulates hearing health profes sionals If you can t resolve a problem or issue with a practitioner you may file a complaint For information write 700 Summer St NE Suite 320 Salem OR 97301 1287 Phone 503 378 8667 503 370 9004 FAX Email hlo info state or us Web Page www oregon gov OHLA HAS PUBLIC UTILITY COMMISSION OF OREGON Programs e Oregon Lifeline Provides eligible Oregonians with either a dis count on monthly landline or wireless phone bills or free monthly prepaid wireless minutes with participating companies e Telecommunication Devices Acce
54. g aid or Cl Behind The Ear one class of hearing aid A telephone where a person can see every word the caller says on a display and also hear the words if desired Shows in writing what is said on television video screen or other visual displays A trained court reporter or stenographer uses a special stenotype machine to display a spoken dialogue on a screen Remote CART can be per formed at a different location from the event and transmitted to the site Captions that can be viewed if activated 77 CI Cochlear Implant CIC CVAA FCC FM HAT Hearing Aid Dispenser Hearing Care Provider Hearing Aid Specialist Hearing Care Specialist HOH IL Inductive Audio Loop ITC ITE Loop System OC Open Captioned An electronic device that partially restores hearing in those who have severe to total hearing loss due to damage of the inner ear hair cells A processor behind the ear captures the sound and transmits it to an implanted receiver and electrode array that stimulates the auditory nerve Completely In Canal one class of hearing aid Video Accessibility Act Federal Communications Commission Frequency Modulation one type of listening HAT Hearing Assistive Technology Includes signaling and assistive devices Someone who is authorized by the state to measure hearing and to fit and sell hearing aids Credentials for becoming a hearing aid dispenser vary by state but typically involve
55. h 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 or CAT scan to establish medical eligibility During that time the candidate will receive counseling about the risks and benefits of an implant Single cochlear implants are covered by some health insurance plans Medicare Oregon Medical Assistance Program and the Veterans Administration In Oregon if an insurance company cov ers one Cl they must cover a second assuming qualifica tion under FDA criteria Your surgical service will usu ally assist you in obtaining preauthorization from your Insurance company Once the surgery is per formed and healing is com pleted usually about 3 4 weeks you will meet with your audiologist receive the external speech proces sor and related accessories have the Cl activated and receive your initial mapping Western Oregon UNIVERSITY REGIONAL RESOURCE CENTER ON DEAFNESS The Regional Resource Center on Deafness offers degree programs to prepare professionals to meet the unique communication rehabilitation and education needs of individuals who are hard of hearing deaf late deafened and deaf blind Please visit our Web site www wou edu rrcd or contact us at 503 838 8444 or e mail RRCD wou edu Applications are generally due mid March each year
56. hat allows better understand ing of speech in noise SOUNDS SEEM DISTORTED e You may have turned your hearing aid up too high and the sound is saturated Get your saturation level checked e You may need a second aid to help you hear well 25 e Your hearing aid may have gotten wet or for other reasons needs repair e You may need to put in a fresh battery e You may have also forgotten to turn off your telecoil What Should I Do With My Old Hearing Aids Most people replace their aids every 5 to 10 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 lo cal Lions Club or Hear Now Lions Clubs in Oregon work with local clinics to refurbish hearing devices Hear Now Starkey Foundation collects hearing aids for recycling purposes Any make or model regardless of age can be donated to the hearing aid recycling pro gram All donations are tax deductible and a letter of acknowledg ment will be sent to all identified donors If you wish to donate a salvaged hearing aid or other assistance device please securely package donation and mail to Starkey Hear ing Foundation ATTN Hearing Aid Recycling 6700 Washington Avenue South Eden Prairie MN 55344 Phone 1 866 354 3254 e mail recycling starkeyfoundation org Cochlear implants Cls If you have a severe to profound hear
57. he Oregon Deaf and Hard of Hearing Services ODHHS 500 Summer St NE E 16 Salem OR 97301 503 947 5183 voice 800 521 9615 TTY 503 947 5184 fax A very good detailed summary of ADA requirements by the National Association of the Deaf can be found at www nad org issues civil rights ADA Responsibility for enforcement of the ADA lies with the US Depart ment of Justice If the DOJ takes on a particular case there is an initial attempt to negotiate and mediate compliance and if that fails they may bring suit in federal court Courts may order compensatory damages and back pay to remedy discrimination if the Department prevails Under title III the Department of Justice may also obtain civil penalties of up to 55 000 for the first violation and 110 000 for any subsequent violation To report possible violations of the ADA contact U S Department of Justice 950 Pennsylvania Avenue NW Civil Rights Division Dis ability Rights Section NYA Washington D C 20530 Phone 202 307 0663 Fax 202 307 1197 63 The FCC Federal Communications Commission and You Another law and government agency that has great influence for hard of hearing and deaf people is the FCC Most recently the Twenty First Century Communications and Video Accessibility Act CVAA was signed into law The CVAA updates federal communica tions law to ensure that telephone and television services would be accessible to all Americans with disabilities B
58. he wearer s loss and preferences Especially for individuals with complex hearing loss the more channels and bands the better the sound quality in different situations Directional microphones provide hearing aids with a method of amplifying sounds to the front of the wearer compared to sounds surrounding the user This is especially useful for improving audibil ity of speech in background noise such as in restaurants or large groups Feedback reduction technology helps prevent the annoying whis tling that can sometimes happen when the sound from the hearing aid leaks back into the instrument s microphones Smartphone Applications are becoming readily available and can be used to provide a number of adjustments and functions to some manufacturers hearing devices Choosing Your Hearing Aids Because styles and features continue to change and because these aspects affect your satisfaction with your hearing aids it is important to spend a good deal of time with your audiologist or hearing care PA provider to make this first decision And of course it is important that your audiologist or hearing care provider have the different styles and feature options available for you to try A smaller aid is not necessarily better You may need more power than the smaller aid can provide and you ll definitely want to con sider a telecoil to help you use the telephone and assistive listening devices ALDs Your audiologist or hearing ca
59. ic or autoimmune disorders There are many different symptoms and many degrees of severity Hyperacusis A painful sensitivity to sound often a result of exces sive noise head injury a side effect of some medications or head surgery Although the person has normal hearing the tolerance level for some hearing frequencies low or high is extremely reduced See Recruitment Meniere s Disease A broad term covering a variety of symptoms caused by excessive fluid in the inner ear which impacts balance 3 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 pres sure 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 types of drugs have the potential to cause damage to the inner ear structure and result in temporary or per manent loss of hearing The degree of loss and the possibility for recovery depend on the amount and duration of the use of certain medication
60. 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 deaf ness 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 3 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 4 Consult an Audiologist Hearing Care Specialist for an Audio gram Through a series of hearing tests they will establish an au diogram for you that shows in visual form a number of dimensions of your hearing loss see page 7 for an explanation Audiologists 14 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 or your child Check to see if the audiologist s title includes the letters CCC A Certified Clinical Competence Audiology which indicates certi fication from the American Academy of Audiology They also should be licensed in the state Once you have an evaluation you can then work with the audi ologist who evaluated you or with a hearing care specialist Hear ing care specialists don t generally have po
61. iie uncle lq aeeeneerr ere erent ere anne ne Tats ene n ee errr rT 61 ADVOCACY THE ADA THE FCC AND YOU 0000 cece ence eneee ees 62 YOU ARE NOT ALONE HEARING RESOURCES 65 SUGGESTED EIN Gigs oss spans tea eee ease se eee 75 GLOSSARI gece rescence etree eva anes pas raya E E E E 77 Face the challengeiwith someone you Can trust DONN OREGON ACADEMY OF AUDIOLOGY ACADEMY OF AUDIOLOGY Smith Rock Oregon Audiologists are healthcare professionals specializing in the evaluation diagnosis treatment management and prevention of hearing loss tinnitus and balance disorders in infants children and adults Audiologists earn a doctorate or master s degree in Audiology and are licensed by the state Look for the OAA logo when considering an audiologist Visit www OregonAudiology org to find an OAA audiologist near you OUR MISSION The Mission of the Hearing Loss Association of America HLAA its state associations and its local chapters is to open the world of communication to people with hearing loss by providing information education support and advocacy e Education Our primary purpose is to educate ourselves our families friends coworkers teachers hearing health care providers industry government and others about hearing loss to provide adults and children with tools for self help to sensitize the general population about the special needs of people who have hearing loss and promote understand
62. il info alda org Web page www alda org Blanche Fischer Foundation is a nonprofit charitable institution founded for the purpose of assisting persons who have a disability that challenges them physically and who have financial need You must be an Oregon resident to apply You may apply for financial education or special equipment For information write 1509 SW Sunset Blvd Suite 1 B Portland OR 97239 Phone 503 246 4941 503 246 4941 FAX E mail BFF BFF org Web page www bff org Described amp Captioned Media Program DCMP The DCMP is funded by the US Dept of Education and administered by the Na tional Assoc of the Deaf NAD Its mission is to promote and pro vide equal access to communication and learning through described and captioned educational media For information write 1447 E Main Street Spartanburg SC 29307 67 Phone 864 585 1778 or 800 237 6213 voice 864 585 2617 or 800 237 6819 TTY 800 538 5636 FAX E mail info DCMP org Web page www dcmp org Dogs for the Deaf Trains dogs to assist people who are hard of hearing or deaf There is no charge to the applicant for a hearing dog from this organization For information write 10175 Wheeler Road Central Point OR 97502 Phone 541 826 9220 voice TTY 800 990 3647 E mail info dogsforthedeaf org Website www dogsforthedeaf org Hearing Health Foundation formerly The Deafness Research Foundation A national source for research in hearing and bala
63. ime to set up so it is wise to check in with Disability Services early to find out what the process is to qualify for services what documentation is required how long it takes and how familiar they are with service providers A variety of accommodations many with which you may not be familiar are possible Assistive Listening Systems can be a great help in auditoriums and classrooms Depending on what your functional needs are these accommodations might include assistive listening technology speech to text technology captioning of audio video media using a personal FM system with a neck loop or earbuds a note taker or whatever accommodation the school can provide that meets your needs See the earlier discussion on technology in this chapter Regulations for access to academic programs for adults are estab lished by Section 504 of the Rehabilitation Act and also the Ameri cans with Disabilities Act For more information go to www2 ed gov about offices list ocr transition htm If the institution does not provide accommodations that meet your needs such as listening systems described above or speech to text technology or a note taker there are regulations that define access to academic programs in Section 504 of the Rehabilitation Act and also the Americans with Disabilities Act See for example www hhs gov ocr civilrights resources factsheets 504 pdf Remember we all stumble every one of us That s why it s a comfort to
64. 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 13 others communicate with us Here we need to intelligently analyze our situation and be sure that we aren t doing ourselves a disser vice 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 every one is mortal but life goes on Confronting Your Hearing Loss CRITICAL STEPS 1 Start Now Delays are costly Waiting can make it difficult to regain some of the speech discrimination you have lost as your hear ing ability has declined Waiting poses a threat to your job security and makes communication and relationships much more difficult 2 See Your Primary Care Physician for an initial exam and a referral to an ENT ear nose and throat physician if your insurance requires it Your primary care physician can also give you a basic exam to de termine
65. ing every day sounds noticeable They can reduce the feel ing of vulnerability hard of hearing or deaf individuals can experi ence when cut off from signals of danger Captions Captions translate voice and other sounds to text that is displayed on the television or other video screens Televisions 13 inches or larger built for sale in the US since 1993 have a built in decoder chip that can display the text of dialogue and sounds in the form of captions for TV programs and DVDs if the program has been encoded As a result of recent lawsuits major movie theaters are now required to offer captions as they convert to digital projec tion Captions are displayed on individual viewing devices such as special glasses or an individual display anchored in a cup holder and fixed to a gooseneck that can be positioned in the viewer s line of sight Thanks to the Twenty First Century Communications and Video Accessibility Act CVAA protections people with disabilities are enabled to access broadband digital and mobile innovations the emerging 21st century technologies for which the act is named Much of the act requires that information or programming available on the internet is accessible to people who are hard of hearing that is it must be captioned Captions can also be made available for live presentations or perfor mances Realtime captioning CART is a service provided by court reporters who have training and experience in realtime c
66. ing loss or are deaf and receive minimal benefit from your hearing aids you are likely a candidate for a cochlear implant CI or other implanted device A Cl is an electronic device that changes sound into electrical im pulses and uses these electrical impulses to stimulate the auditory nerve The damaged hair cells in the inner ear are thereby bypassed and the stimuli pass directly to the brain The brain then learns to interpret and identify this stimulation as familiar sounds A Cl consists of several parts Externally there is a microphone that picks up sound and sends it to a sound processor The microphone sound processor is worn on the head body or behind the ear like a BTE hearing aid Internally there is a receiver that is implanted under the 26 skin behind the ear The internal receiver uses the electrical signals from the processor and sends them down a thin wire electrode ar ray that is implanted into the inner part of the ear the cochlea The number of electrodes in the array depends upon the manufacturer Cochlear implant candidacy is determined by information gathered by an audiologist who has specialized in Cls Because implanta tion is a surgical procedure FDA has established criteria for implant eligibility which can be further shaped by the surgical service that will conduct the implantation First the audiologist will administer several tests to obtain information about the auditory performance of the candidate bot
67. ing of the nature causes complications and remedies of hearing loss We provide information on many aspects of hearing loss from technological and medical advances to coping and par enting strategies In doing so we want to help you become an informed consumer on what options are available to you to help you make the best decisions on how to deal with hearing loss e Advocacy HLAA organizations are a leading voice in improving communication access for people with hearing loss on the national state and local level At all levels we ad vocate for communication access in the workplace hotels schools court systems medical and entertainment facilities and we help implement federal and state laws which benefit people with hearing loss e Self Help HLAA believes people with hearing loss can help themselves and one another to participate fully and suc cessfully in society We promote self confidence empower individuals with skills to improve their lives and provide an opportunity for affiliation among people with hearing loss their friends families and professionals At the local level chapters provide support through affiliation with others who share your concerns understand the problems you face and experience the emotions you go through as a person with hearing loss We have all been there and are survivors of hearing loss NOTE Opinions expressed herein are those of the individual authors and are not necessarily those of
68. ion Poor hearing certainly does not mean a poor quality of life but it does create challenges that need to be overcome The impact of hearing loss depends on the extent and suddenness of the loss knowledge patience determination and understanding It is our hope that the information in this booklet will make coping with your hearing loss easier and promote better self understanding plus understanding and acceptance from family co workers and friends I We deeply appreciate the funding for this booklet provided by the sponsors you will notice throughout this book and the many individuals who gave financially and of their time sug gestions and encouragement If this booklet has been a source of encouragement to you or someone you know we welcome donations to enable us to continue our outreach and education to hard of hearing people and their families and friends An order form for additional copies is at the end of this manual or you can send your request and check to the address below All donations will be acknowledged in the HLAA Oregon newsletter and are tax deductible This manual was created and updated by members of HLAA Lane County HLAA Oregon and many other volunteers and contributors Many thanks to Leone Miller HLAA Lane County for sharing her idea of a survivor s guide with her chapter and working with us to create it Revised Fifth Edition published January 2015 Survivors Manual HLAA OR or Newsletter HL
69. itioner our car other voices 45 traffic or a restaurant kitchen these noises mask speech sounds and hearing aid or Cl technology is often not enough to deal with the problem As a result when we go to a public lecture a concert or a play have dinner with a group of friends serve on a jury attend a house of worship go to class have a restaurant meal or attend an athletic event we are often unable to understand speech BEHAVIORAL COPING METHODS When you started having trouble understanding speech you might have developed some behavioral coping methods without thinking about it Examples include e choosing a quieter restaurant e sitting where you have a good view of others faces e using a round table for meetings e asking people to speak one at a time e checking with others to be sure you understood correctly e asking people to speak clearly and slowly or e sitting with your back to a window so that the light doesn t inter fere with your ability to read lips or speech read In some cases you can modify the environment to make it better for understanding speech For example area rugs window curtains or carpeting padded chairs and table cloths as well as tapestries as wall hangings help to keep sound from reverberating echoing and interfering with our ability to understand Providing written material is also helpful even when technological solutions are provided Scripts of plays the bulletin for a house
70. k 2010 Myers David 2000 A Quiet World Living With Hearing Loss Michigan David and Carol Myers Foundation Sacks Oliver 1989 2000 Seeing Voices A Journey Into the World of the Deaf NY NY Vintage Books Schamadan Charlotte 2010 Hearing Aides What I don t Hear I Make Up Autobiography Backwords Press Shea Gerald 2013 Song Without Words Discovering My Deaf ness Halfway Through Life Boston MA Da Capo Press Educational Papers And Essays Bauman Neil 2013 When Your Ears Ring 6th Edition Coping with Your Tinnitus Here s How Stewartstown PA Integrity First Publications Carmen Richard 2009 3rd Edition The Consumer Handbook on Hearing Loss and Hearing Aids A Bridge to Healing Sedona AZ Auricle Ink Publishers The Consumer Handbook on Tinnitus Richard S Tyler Editor 75 2008 Sedona AZ Auricle Ink Publishers Davis C D Atcherson S R and Johnson M L 2007 Demystify ing Hearing Assistance Technology A guide for service providers and consumers Northridge CA PEPNet West National Center on Deafness California State University Northridge Stone Rocky 1993 An Invisible Condition The Human Side of Hearing Loss by the late founder of the HLAA formerly SHHH available for download from HLAA www hearingloss org about us history 1993 Trychin Sam 2003 2009 Living with Hearing Loss books amp ma terials available at www Trychin com bookstore h
71. l the fear of becoming isolated These are a few of the contribut ing facts which can lead to a possible withdrawal from society by the progressively deaf person Cornforth Woods 1972 as cited in the HLAA Mental Health Committee Brochure 10 Don t Hide Your Hearing Loss the Truth May be Better Than What They Are Thinking When we can t hear or understand what is being said others may make incorrect assumptions about us Because we don t respond or respond inappropriately to what is being said people may think that we are unfriendly incompetent insensitive or just plain uninterested and can lead to your or others embarrassment Better to let them know that you have difficulty understanding be cause you are hard of hearing and tell them things they can do to make communication better And if you are delaying dealing with your hearing loss make a bee line to your hearing care provider because Once A Hearing Loss Is Detected Much Can Be Done Read On G CaptionCall Have you tried CaptionCall yet Order a FREE CaptionCall phone today 1 Goto www captioncall com to print the Professional Certification Form CaptionCall 2 Complete the form with your a hearing care or healthcare 123 Or ers fee ust te provider Refer to promo s ur dentist appointment code MN1136 and send it in That s all there is to it See what you ve been missing www captioncall com 1 877 557 2227 Professio
72. lf to the use of the hearing device by listening to 34 just one or two other persons in a quiet setting triend 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 Involve your family Let s face it we don t really wear hearing devices simply because we want to hear better We wear them because we want to improve communication with our friends and family It s all about relationships Relationships are probably one of the main reasons you got your hearing device in the first place 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 indi vidual 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 speech reading 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 device Increase your adaptation to volume At first hearing device wearers tend to be displeased with the volume of sound in different situations Experiment with different volume settings To find a Real Time Captioner or or programs to get a
73. loud sounds less annoying listening is less stressful and your ears are better protected from excessive amplification e Safety increases because you are better able to determine from which direction a sound is coming with two hearing devices e You ll avoid being unintentionally rude due to the fact that single sided listeners tend to ignore someone speaking into their deat ear while the good one is listening to other things e 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 e Hearing in noise ranges from difficult to impossible with only one good ear Together the blended voices can often be converted to a collection of one distinguishable voice e A person with a hearing loss in both ears who wears a hearing de vice in only one ear loses much of the ability to recognize speech 33 in the other ear This is called auditory deprivation For many people it is beneficial to wear two hearing devices Binaural am plification 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 devices doesn t make sounds twice as loud but with two the brain has more information to help you hear and understand Learning To Use Your New Hearing Devices Adjusting to a new hearing device takes time determination and
74. n HLA today Get support Give support 64 You Are Not Alone Hearing Resources Hearing Loss Association of America HLAA 7910 Woodmont Ave Suite 1200 Bethesda MD 20814 301 657 2248 Voice 301 913 9413 FAX E mail info hearingloss org Web page www hearingloss org This is the HLAA organization on the national level States can cre ate state associations or local chapters Hearing Loss Association of America Oregon HLAA OR PO Box 22501 Eugene OR 97402 Phone 541 689 7242 Web page www hearinglossOR org E mail info hearingloss org HLAA OR is Oregon s state association We publish a statewide quarterly newsletter HEAR IT IS that is supported through dona tions If you d like to receive this newsletter please send your mail ing information and contribution if you can via e mail preferably or mail your request to our address above See the order form at the end of this booklet There are also several Hearing Loss Association of America chapters in Oregon 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 e Insights into effectively living with hearing loss e Support Referrals Information e Information about the latest technology e Opportunities to share concerns and hear from others 65 We believe in education for those who hear well and those who cannot so that all may under
75. n optimal CART Provider visit our website volume And remember sounds that seem too loud at first be WWW ORCRA ORG come more comfortable with time so don t set the volume o control at a level too low for ef Oc pou ficient listening some REPORTERS ASSOCIATION Gradually increase the number of situations in which you use your hearing devices After you have adjusted fairly well in your own home to background noise and to conversation with several 35 people at once you ll be ready to extend the use of your hearing devices to the supermarket house of worship office or other pub lic places Turn the volume low to reduce the impact of unfamiliar background noise Experiment with adjusting volume and if your aid is programmable try changing programs in different situations e Use the aid s telecoil t coil or 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 e Keep a written record of your experiences so you can tell your hearing care provider how you ve done when you return for a follow up visit This is important The more accurate a
76. nal certification of hearing loss required to participate in this program A standard phone line and Internet connection are also required The free phone offer includes free delivery installation and in home training by a friendly CaptionCall Trainer 11 The Emotional Side of Hearing Loss Frustration and Other Emotions 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 or dis couragement Even though we may be assertive and up front about our hearing loss these emotions remain We need to recognize how much it impacts our energy to be out there day in and day out admitting our loss making our communication needs known and facing obstacles 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 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 with out asking our opinion this is very emotionally difficult Many things affect our ability to hear Many hearing
77. nce science with a mission to prevent and cure hearing loss and tinnitus through groundbreaking research They also publish the Hearing Health Magazine 363 Seventh Ave 10th Floor NY NY 10001 3904 Phone 212 257 6140 or 866 454 3924 Email info hhf org Web page www hearinghealthfoundation org House Clinic Inc Hearing Ear Institute aims to improve the qual ity of life of those with ear disease or hearing or balance disorders through research and education Provides a nationwide referral and information service at 2100 W 3rd Street Los Angeles CA 90057 Phone 213 483 9930 213 989 7473 FAX E Mail info hei org Web page www houseearclinic com Independent Living Resources promotes the philosophy of indepen dent living by creating opportunities encouraging choices advanc ing equal access and furthering the level of independence for all people with disabilities For information write 1839 NE Couch St Portland OR 97232 Phone 503 232 7411 voice 711 TTY 503 232 7480 FAX E mail info ilr org Website www ilr org National Center for Rehabilitative Auditory Research NCRAR located at the Portland VA Medical Center is a multi disciplinary multi site resource dedicated to research to improve the rehabili 68 tation of veterans with hearing disabilities The Center conducts research trains new scientists and disseminates current research findings to the scientific community to veterans and to the commu
78. nd noise and feedback See page 18 for more information about the telecoil You may need to turn the volume up on your hearing device when you switch to telecoil mode Furthermore because telecoils are positioned differently in different hearing aids or Cls and are not usually located where the microphone is located try holding the telephone speaker in different positions close to your hearing device until the sound comes in clearly Amplification can make understanding on the telephone easier There are small amplifying devices that are attached to a corded phone and have adjustable volume and in some cases tone con trol In addition special amplified phones are available and in Oregon amplified phones are available free on loan from the State of Oregon s Telecommunication Devices Access Program TDAP to qualified individuals See the TDAP s address and phone number in the Resources Section If you can no longer use the telephone due to the severity of your hearing loss different methods of translating the caller s voice to text are available 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 42 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 who uses a TTY to call
79. nd specific you can be in telling what works or doesn t work for you the bet ter help you will receive e Sometimes with hearing aids the ear mold or hearing aid case can be irritating If yours is go back to your hearing care provider and ask to have the ear mold 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 e Have patience Your brain needs time to learn to interpret the new sounds it hears You need time to become comfortable with the aids Caring For Your Hearing Device Your hearing device is an electronic appliance like a radio cell phone or digital watch It needs a battery to work and requires regu lar maintenance and cleaning Treat this costly investment carefully and with respect The two most common causes of hearing aid problems are earwax and moisture Earwax 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 36 For most hearing devices moisture is the cause of significant dam age to the mechanical and electronic components and for hearing aids obstruct sound from passing through the tubing Whenever possible do not expose your hearing device to moisture including perspiration the shower heavy rain hot tubs or swimming When you are not wearing your hearing devices store them in an airtight container that contains
80. ndary education and training settings Web page includ ed training materials on using assistive devices internet resources and more For information write WROCC Regional Resource Center on Deafness Western Oregon University 345 N Monmouth Ave Monmouth OR 97361 Phone 503 838 8642 voice TTY 503 838 8228 FAX E mail WROCC wou edu Web page www wou edu wrocc HEARING LOSS RELATED INTERNET AND E MAIL RESOURCES Good Stuff and free There are some wonderful resources avail able 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 or to join a forum chat groups or similar online communication options like Facebook Yahoo and Google groups When you subscribe to an electronic mail list the listserv software will add your name to the list Gener ally you will receive a letter of welcome or some type of confirma tion 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 informa tion 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 listserv 71 address or simply read
81. ning com Pooh s friend 503 299 6200 Hearing Aids Cochlear Implants Other Systems and You In order to get the best hearing acuity and speech understanding it is probably obvious that you should work with your hearing care provider audiologist or hearing care specialist to select the most appropriate hearing device such as a hearing aid or cochlear im plant for your particular loss However while your ability to hear and understand should improve noticeably unlike what corrective lenses do for vision these hearing devices do not restore normal hearing Speech discrimination may still be difficult especially in noisy situations It takes time and practice for your brain to learn the new perceptual skills required to get the most from your new hear ing devices So have patience wear them as often as possible and in different settings With cochlear implants optimal results from this brain training can take several months of use and periodic readjustments mappings In fact for some Cl recipients continued improvement can take one or more years Choosing a Hearing Care Provider Make sure you have confidence and trust in the hearing care pro vider you choose They should spend time to help you find the right hearing device schedule several visits to work with you for adjustments and to teach you how to use and maintain your hearing devices They should also be available to provide warranty and other services fo
82. o experience tinnitus ringing in the ears and head noises For information contact http Awww ata org NOISE INDUCED HEARING LOSS Repeated exposure to noise has caused approximately 15 26 million of Americans to lose part or all of their hearing NIDCD estimates One of the most frequent causes of hearing loss is Sud den Hearing Loss SHL usually in one ear which can be caused by exposure to noise or viruses although the cause is frequently un known This type of hearing loss is usually never recovered Such environmentally produced hearing loss has no medical or surgical treatment except for cochlear implants for those who are severely or profoundly impacted But hearing aids bone anchored implants cochlear implants and 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 im mediate loss the loss damage is cumulative across time I believe in the power of the spirit The body may falter but the spirit shines on Lighting the way to strength courage and hope Just as the sunrise lights a new day DECIBEL RATINGS HAZARDOUS TIME EXPOSURES OF COMMON NOISE EXAMPLES Source Am Academy of Otolaryngology 0 30 40 50 60 70 Lowest sound audible to the human ear Quiet library soft whisper Living room quiet office bedroom away from traffic Light traffic at a distance refrigerator gentle breeze Air conditioner a
83. of worship or a lecture outline are examples of handouts that can aid people who are hard of hearing or deaf Here are some specific examples of behavioral coping strategies that are often helpful e Try to be no more than 3 6 feet away from the speaker That is 46 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 or cup your ear as a cue for the speaker to speak up 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 to get your attention before speaking to you If they are speaking too softly ask them to speak more loudly but not shout Ask them to be pa tient and maybe to state the topic of conversation if there s been a change from Aunt Hattie s big toe to the football scores Using vision to speech or lip read is very important to help with understanding speech It is estimated that people with normal hearing receive 25 of their information visually and it is even more important to us the hard of hearing Therefore face the person with whom you re conversing so you can see his her lips and facial expression and observe gestures Also ask the person to move so the light from the window shines on their face not on the back of their head Move away from or turn off background noises su
84. ose in need Most programs have income requirements that you ll need to meet to be eligible and they all require a hearing evaluation by an audi ologist which in most cases you ll have to pay for yourself 22 Here s where to look for help AARP Hearing care program provided by HearUSA offering 20 percent savings on hearing aids and hearing healthcare products Contact them at Website http aarp hearusa com or Phone 800 203 7048 AUDIENT ALLIANCE An affiliate of Sight Life formerly the Northwest Lions Founda tion for Sight amp Hearing and EPIC Hearing Healthcare Candidates qualify for the program based on their annual household income Phone 866 956 5400 X2 E mail hear epichearing com Website www AudientAlliance org BETTER HEARING INSTITUTE Financial Assistance Guide download helpful and informational resource guides Phone 1 800 EAR WELL Website www betterhearing org publications SERTOMA A civic service organization with a national mission for hearing health They have compiled a list of organizations that have pro grams to assist disadvantaged individuals obtain hearing devices Phone 816 333 8300 Website www Sertoma org TRAVELERS PROTECTIVE ASSOCIATION OF AMERICA TPA The TPA provides financial aid to people who suffer deafness or hearing impairment and who need assistance in obtaining mechani cal devices medical or special treatment or specialized education as well as speech classes not
85. ounded view of the product this list may be just the place ONLINE DISCUSSION GROUPS To find an online group on a topic you are interested in check out the Yahoo and Google directories and enter the topic in the search area You will find a wide variety of forums chat rooms and infor mation sharing sites For example Groups on Facebook www facebook com enter the topic you are interested in their search area Captioning yahoogroups com Discussion of open and closed captioning and subtitling for deaf hard of hearing and hearing people Beyond Hearing This is a great place to talk about living in main stream society with hearing loss often partial or acquired Topics range from the technical to the supportive if it s about hearing loss then it s on topic beyond hearing yahoogroups com Better Hearing News Better Hearing News bhNEWS is dedicated to the dissemination of interesting and beneficial information for the 73 Hearing Loss Gang and more A flexible format with some com edy and whatever It is an upbeat place to enjoy and learn Com ments and discussion are always welcome bhNews yahoogroups com Dizzinews Dizzinews is an email based discussion group that s devoted to helping people who are suffering with inner ear and bal ance disorders https groups yahoo com neo groups Dizzinews into Loops_and_Telecoils yahoogroups com Discussion of all things related to induction loop
86. people do not understand that if they refuse to listen to us or 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 Some days we are stronger than we are on others We have the courage and strength to keep trying until the situation is straight ened out Other days we may want to simply crawl into bed and pull those covers up over our head On our good days we have the courage to take care of ourselves and acknowledge that being asser tive 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 12 people who can help us by listening and encouraging us And then there are 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 But we can learn how best to cope with it and then teach the world Grieving Hearing loss is emotionally painful for many reasons Our need to communicate is so constant the situations and environments in which we n
87. r Hearing 7 1C os cncaniceenessnannntancereptassaxeneseotuonnnanipnncenns 21 Costs and Resources for Purchasing Hearing Aids 00eeeeeee 22 Help My Hearing Aid Has a Problem ccssccccsccccccccecccesccseceseeees 24 What Should Do With My Old Hearing Aids eeeeeeeeeeeee 26 OT Cam Vinton its CNG csigess coecenenperweoeaes E 26 Cochlear Implant Surgery Making Choices cceeeeeeeeeeeeeeeeeeeeeeees 30 Two Devices Are Often Better Than One cccccccssssesssseesseseeeseeens 33 Learning to Use Your New Hearing Devices scrvoncisoneinusaiontrsntiseamenwas 34 Caring For Your Hearing CVC S ccvatanctoniacior sans eetercisceanbonon yes temesapecens 36 HEARING ASSISTIVE TECHNOLOGY ALDs Captions and Other Technical Things that Make a Difference 38 Telephones Cell Phones Smartphones and YOu cccceeeeeeeeeeeeeeeteees 42 GENERAL COPING SKILLS AND HOW TECHNOLOGY CAN HELP YOU Making Speech Understandable In Difficult Settings cc eeeeeeees 45 Making Public Meetings And Meeting Places Accessible ceeee 49 Accessibility In The Work PIAC Cisco cuit cdeavncsectnarecepcanexssseialgwuteetartaveaieats 52 Accessibility In Medical Settings scxcvasseusnwsrenessamesvansquimessoueniouessmneuonen 54 OOO ACCESS iD Iy aiccnceccetcesucceocaeesennicncomsscsnnaxececeotuonnionaaiepnncenns 58 Accessibility In Adult Educational Settings ceeeeeeeeeeeeeeeeeee 59 Bie ca lu
88. r Implant Forum the focus in the following three groups is cochlear implants The discussion is sent via e mail and covers top ics related to the cochlear implant experience 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 Cochlear Implants Cochlear Americas a cochlear implant manufacturer has a Co chlear Community page for meeting people who have experience with implants via Facebook Twitter and YouTube fa Hearing Journey by Advanced Bionics a cochlear implant manu facturer www hearingjourney com Hear Peers by MedEI a cochlear implant manufacturer www medel com CI Circle for Parents Connecting Parents of Children with Cochlear Implants Cl Circle arose from the need for parents to gain accurate and non judgmental information about pediatric cochlear implants The original group started with just eight members and has now grown to over 2000 members internationally www cicircle com cihear yahoogroups com This group is a place to share this journey and get ideas for making the journey more effective and enjoyable problemci subscribe yahoogroups com Some who have had this surgical procedure have been disappointed by its results This group is the place to discuss those difficulties If you are investigating an implant and wish to get a well r
89. r efforts to participate and what you need as reasonable accommodations For more information about available technology check out the earlier section in this chapter Here are some of the coping strategies that will help with meetings and communication in the work place e Establish common business etiquette for example Take turns speaking e Repeat directions agreements appointments instructions and so on to be sure you are understood e Some peoples voices may be more difficult for you to hear for example higher pitched voices so let it be known to avoid future misunderstandings e Request that people speak more slowly or more loudly if needed e See if you can hold meetings in rooms with good acoustics and lighting Be sure and sit where it is best for you to hear and under stand e Use captions for phone meetings use your PC to display captions 53 Look in other sections of this booklet to find more coping skills that may apply to your work situation Regardless of the severity of your hearing loss your positive and pro active attitude will go a long way toward having others see you as the effective and dynamic person you are Know your rights A person being hired cannot be questioned di rectly 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 negotiate for such things as
90. r lawful right and will make a big difference in your ability to function in this situation The Ameri cans with Disabilities Act ADA prohibits discrimination based on mental or physical disability in gaining access to public services Your ability to function and obtain justice should not be left to chance To deal with your communication needs in court you should e Educate yourself about the accommodations that are available upon request These include Real time Captioning which means you ll be able to read on a screen everything that is being said Assistive Listening Devices can also be very helpful if all court participants use a microphone Infrared style Assistive Listening Devices can work well in courtrooms and in the rooms where 58 the jury is deliberating because the signal cannot pass through the walls so all proceedings are confidential as required by law FM and Induction Loop systems do not provide this level of privacy and should not be used in a court room setting e Make a written request to the court administrator for appropriate accommodations as early as possible and check back to confirm that the accommodations you have requested will be in place e Keep dated records of all correspondence and phone calls e Stand firmly by your request e Plan to arrive a bit early and be sure the devices or services you requested are there for your use and reject poorly provided ac commodations or a total lack of accommo
91. r the life of the aid In addition e Find out what program they have in place to teach you to use the aid or implant and to communicate most effectively e Make sure the hearing care provider 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 And if you need to extend this trial period be sure to get the extension agreement in writing Some hearing care providers allow a trial period of 60 or more days to get the correct fit Negotiate for the longest period you can 16 Check beforehand which fees are non refundable should you need to return the aids Typically costs for testing custom fit parts and or ear molds are non refundable Does the hearing care provider offer repair services for your model Is a loaner available should your aid need repair Select a hearing care provider 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 just one that might be better for you Consider the aid s potential usefulness rather than its cosmetic ap peal 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 hea
92. re provider will help you decide what s right for you based on your audiogram but the hearing of those with identical audiograms can be noticeably differ ent and their best hearing aid and programming can differ greatly Be ready to try more than one model of hearing aid to find the best one for you Negotiate the longest trial period at least 30 days return fee and warranty period and get a written contract after a house and car a hearing aid or two might be your greatest expense in a year Ask your audiologist or hearing care provider if classes are offered to help you adjust to your hearing aid and cope with your other hearing needs Costs and Resources for Purchasing Hearing Aids Hearing aid costs vary because of design and power but none are inexpensive Your hearing care provider 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 entirely although some plans will pay for the audiologist exam Medicaid may cover one hearing aid every three years But there s good news Today there are a number of organizations that offer hearing aid assistance programs to help th
93. ring care provider takes time to ask about your listening needs in detail 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 your listen ing needs your dexterity and your financial situation Ask about various options available in hearing aids such as a tele coil For a small additional cost the telecoil enhances telephone use and allows you to use assistive listening devices in theaters meetings in noisy situations and with TV and stereo See the next section for more information on telecoils Don t be pressured into purchasing specific aids or aids you are unsure about Seek a second opinion if you want more informa tion or want to compare prices Good hearing care providers have a lot of creative solutions avail able venting the ear mold making it from different materials changing the diameter of the ear tube or ear hook 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 hearing care 17 provider to get the proper fit e If you need to file a complaint please contact State of Oregon Health Licensing Office HLO formerly the Oregon Health Licensing Agency at 503 378 8677 or e mail hlo info state
94. ructions 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 en ergy 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 advo cate or patient care coordinator for help in solving your problems IN OTHER MEDICAL SITUATIONS e Tell the receptionist when you check in for your appointment that you are hard of hearing and probably won t hear your name being called Ask them to catch your eye or walk over to tell you e Ask your dentist family physician eye doctor or other medical person to place the Communication Access Symbol sticker on 56 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 Plan to use a personal listening device if one is not provided and if it will help you understand better Ask that a nurse be present to help with communications In meetings insist on microphones with ALDs FM or loop system or real time captioning if you need them to understand
95. s Existing Sensorineural Hearing Loss see below can be aggravated by the use of ototoxic drugs Some ototoxic drugs include antibiotics such as streptomycin erythromycin and van comycin when given intravenously some chemotherapeutic agents such as cisplatin nitrogen mustard and vincristine can also damage your hearing 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 Besides not hear ing certain sounds 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 caused by a broad variety of reasons Tinnitus With tinnitus one hears sound where there is no exter nal physical sound present People experience it as head noises or ear ringing which may vary in pitch and may come and go or remain constant There are many causes and it is often associated with hearing loss Several forms of treatment medical or surgical 4 are currently available All patients with tinnitus should consult an ear nose and throat physician otolaryngologist before seeking any other form of treatment The American Tinnitus Association provides information referrals and support for people wh
96. sounds noise at work or leisure activities In age related hearing loss known as presbycusis changes in the inner ear that happen as you get older cause a slow but steady hearing loss The loss may be mild or severe and it is always permanent Approximately 4 000 new cases of Sudden Hearing Loss SHL occur each year in the United States Hearing loss affects only one ear in nine out of ten cases Only 10 15 percent of patients with SHL know what caused their loss For 60 of veterans returning from current combat situations the number one disability is hearing loss and tinnitus Those with mild hearing loss are two times as likely to develop dementia and this risk increases with the severity of the hearing loss In older people a hearing loss is often confused with or complicates such conditions as dementia Depression and isolation are common among those with hearing loss Men are more likely to experience hearing loss than women High levels of cotinine the chemical that indicates exposure to tobacco smoke and second hand smoke has been directly linked to higher risks of some types of hearing loss Only one out of five people who could benefit from a hearing aid actu ally wears one Sources Hearing Loss Association of America HLAA National Institute on Deaf ness and Other Communication Disorders NIDCD and Hearing Health Foundation 1 Do You Have a Hearing Loss You may have a hearing loss if you often ask p
97. speaker s voice to you is a hand held personal listening device with an integrated mi crophone or an FM or Bluetooth device the principles are the same e effectively reduce the distance between you and the speaker and e eliminate or reduce background and interfering noises For gatherings at a table like meetings or meals special micro phones can be placed in the center of the table which allow you to use a personal FM system and make it easier to understand every one Similarly there are Bluetooth devices where the detachable microphone and transmitter are placed on the table and the receiver with an integrated neck loop is worn by the listener This set up feeds the sound to your hearing device as if it were equipped with a telecoil There are also devices to make speech and music from a stereo system or television easier to understand You can purchase such devices from specialized vendors or catalogs which include small area loop systems that can be installed in your home on a chair or the area surrounding your chair There are telephones that translate the caller s speech to text cap tions on a small video screen built into the phone as well as provid ing voice amplification see p for more information on tele phones NOTE For more helpful information see also the section in this chapter on Helpful Technology in Public Meetings and the chapter on Hearing Assistance Technology Making Public Meeting amp
98. ss Program TDAP Loans adaptive telephone equipment at no cost and with no income restrictions to eligible Oregonians who have a loss in hearing speech vision mobility or cognition Oregon Lifeline amp TDAP Contact Info Phone 800 848 4442 voice 800 648 3458 TTY 971 239 5845 Videophone 877 567 1977 Fax E mail puc rspf state or us Website www rspf org Oregon Telecommunications Relay Service OTRS A service that allows persons with hearing or speech disabilities to place and receive phone calls It operates twenty four hours a day seven days a week and 365 days a year There are several forms of the relay services available depending on the telephone equipment and the needs of the user including TTY to Voice Captioned Telephone 70 Voice Carry Over Hearing Carry Over Speech to Speech Spanish and Voice to TTY For information dial 800 676 3777 or go to www oregonrelay com Vestibular Disorders Association VEDA is an information and support organization for people with dizziness inner ear balance disorders and related problems For information write 5018 NE 15th Ave Portland OR 97211 Phone 800 837 8428 voice mail 503 229 8064 FAX E mail info vestibular org Web page www vestibular org Western Region Outreach Center and Consortia WROCC pro vides consultation training information and resources to insure that the access needs of hard of hearing and deaf individuals are met in all post seco
99. ss com LS amp S LOW VISION AIDS 145 River Rock Drive Buffalo NY 14207 Phone 800 468 4789 email LSSinfo LSSproducts com website www LSSproducts com HARRIS COMMUNICATIONS 15155 Technology Drive Eden Prairie MN 55344 Phone 800 825 6758 email info harriscomm com website www harriscomm com CLEARSOUNDS 1743 Quincy Ave Unit 155 Naperville IL 60540 Phone 800 965 9043 email info clearsounds com website http Awww clearsounds com WILLIAMS SOUND 10300 Valley View Road Eden Prairie MN 55344 Phone 800 328 6190 website www williamssound com 41 Telephones Cell Phones Smartphones And You CHOOSING A TELEPHONE For many people with a hearing loss it is often hard to hear well on the telephone But there are at least three ways that using the tele phone can be made easier by using your telecoil amplification and voice to text First take the time to check out different telephones because not every phone will work for everyone some have better sound qual ity than others Beyond that use your telecoil First you have to activate your telecoil either by switching from M microphone to T telecoil on your hearing device using either external con trols a remote or automatically depending on how your device is equipped Because all standard telephone receivers come with a built in amplifying coil with the telecoil activated the caller s voice is clearer and unaffected by backgrou
100. ss org sites default files docs Ross_Audiogram_MJ04 pdhf DEGREES OF HEARING LOSS Mild 25 to 40 dB Faint or distant speech may be difficult Lip read ing 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 the 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 one foot from the ear Profound more than 91dB Loud sounds may be heard but vibra tions will be felt more than tones heard Vision rather than hearing is the primary avenue for communication How We Perceive Sound In order for you to hear sound must pass through e the outer ear the visible portion of the ear and ear canal e the middle ear the eardrum and three tiny bones e the inner ear the fluid filled snail shaped cochlea containing 8 Inner Ear Middle Ear Outer Semicircular Ear 3 Canals Malleus Incus Facial Nerve Nerve Eustachian Tube thousands of tiny hair cells responsible for hearing and the labyrin thine system responsible for balance The outer ear collects the sound and directs it through the ear canal to the eardrum in the middle ear The sound waves strike the ear drum causing it to vibrate an
101. st graduate degrees in audiology and therefore cannot do diagnostic audiological services However they do have practical experience in the fitting and selec tion of hearing aids They must also be licensed by the state and may be certified by the National Board for Certification in Hearing Instru ment Sciences BC HIS Contact the State of Oregon Health Licens ing Office see the Resources Section at the end of this manual 5 Get your Hearing Aids Your next destination is the office of an audiologist or hearing care provider who will work with you to select fit and modify the appropriate hearing aids to accommodate the special characteristics of your nearing loss They II also intro LNS Captioning uce you to the use of hearing f DMM os Accurate Dependable Affordable aids and instruct you in their care www LNSCaptioning com and maintenance 6 Consider a Cochlear Implant if you can no longer benefit from hearing aids See page 26 For information on resources and ie gt jit Ton l provides quality captioning cost of heari ng aids coch lear services for Oregon s deaf and implants and similar devices see hard of hearing community page 22 e The Pacific NW leader in live and post production captioning You re braver than you believe e Stadium and arena captions And stronger than you seem e Conferences and seminars and smarter than you think Your Words Our expertise Christopher Robin www LNScaptio
102. stand the causes challenges and pos sible remedies for hearing loss At our meetings you ll find a com fortable 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 You can learn about a Hearing Loss Association of America chapter in your area or how to start a chapter by contacting HLAA OR or HLAA s State amp Chapter Coordinator at the address below State amp Chapter Coordinator Hearing Loss Association of America 7910 Woodmont Avenue Suite 1200 Bethesda MD 20814 301 657 2248 Voice 301 657 2249 TTY 301 913 9413 FAX Access Technologies Inc ATI Specialists in ergonomic and assis tive technology For more information write 2225 Lancaster Drlve NE Salem OR 97305 Phone 800 677 7512 voice TTY 503 361 1201 voice TTY 503 370 4530 FAX E mail info accesstechnologiesinc org Web page www accesstechnologiesinc org Acoustic Neuroma Association ANA ANA provides information and networking support for pre and post treatment acoustic neu roma patients For information write 600 Peachtree Parkway Suite 108 Cumming GA 30041 6899 Phone 877 200 8211 voice 877 202 0239 FAX Email info anauas org Web page www anausa org Alex
103. t 20 feet conversation sewing machine Busy traffic noisy restaurant At this decibel level noise may begin to affect your hearing if you re exposed to it constantly THE HAZARDOUS ZONE 80 90 100 120 140 180 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 Truck traffic noisy home appliances shop tools lawn mower leaf blower As loudness increases the safe time exposure decreases Damage can occur in LESS than eight hours 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 Rock band concert in front of speakers sandblasting thunderclap The danger is immediate at 120 dB exposure can injure your ears Gunshot blast jet plane Any length of exposure time is dangerous noise at 140dB may cause actual pain in the ear 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 Sounds can be represented on a graph that shows two different dimensions pitch or frequency measured in Hertz Hz on the horizontal dimension and loudness or intensity measured
104. telecoil setting on a hearing aid it turns off the microphone so that only electromagnetic signals are picked up and then converted to sound Allows a person who can speak but not hear well to talk on the phone via the Relay System Many people believe that support is something that you give to someone you feel sorry for or that it means prop ping up someone who would fail unless you were there to give him a boost But that s not the way I see it Support is the boost you can give someone who can help himself but who needs a partner to open a window or push aside a roadblock Dave Thomas 79 Need Assistance to Keep TD A Telecommunication Devices Access Program Loans adaptive telephone equipment at no cost to qualifying Oregonians OT AP Oregon Telephone pa a Assistance Program A Reduces monthly telephone bills for Oregonians receiving qualifying benefits 800 848 4442 Voice 800 648 3458 TTY COMMISSION puc rspf state or us E m www rspf org eee ee ee E ORDER FORM Hearing Loss Association of America Oregon HLAA OR www hear inglossOR org publishes a statewide newsletter about hearing loss Read about coping strategies assistive technology personal experi ences telephone options and more Donations to help us pay costs are welcome HLAA OR is a 501 c 3 charity and depends on donations amp grants All personnel are volun teers o Yes I would like to receive the HL
105. texting and instant messaging functions CHOOSING A CELL OR SMARTPHONE For hard of hearing users the ability to understand conversations on a cell phone is probably the most important consideration Although still not easy choosing a cell phone that works for you is made easier by the M and or T rating that is required for some phones The M rating refers to the microphone mode of your hearing aid and designates phones with radio frequency levels that are less likely to interfere with a digital hearing aid An M4 rating is considered best T ratings designate the capability of the phone to link with a hearing 43 aid that is set to telecoil and to avoid electronic noise and feed back Phones with a T4 rating are considered best when using a cell phone with hearing devices on the telecoil setting One more reason to get a t coil Theoretically choosing a cell phone with a M4 T4 rating should guarantee that you will hear better with that phone than with one that has lower ratings or without ratings at all But like many tech nical specifications the M and T ratings only tell part of the story Each person even those with identical audiograms and trying to use the same phone will probably hear the caller s voice differently With that in mind when choosing a cell phone it is best to try a number of them rather than to say order one online without trying them out You might even try phones without M and T ratings before you de
106. 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 and cochlear implants do not correct they merely AID they do NOT restore normal auditory function We must keep in mind that others may not comprehend the importance of for example maintaining visual contact with the speaker because we depend so much on lip or speech reading As another example even those with whom we live may not un derstand that our ability to hear can depend on the time of day how we are feeling or our surroundings People may mistake our lack of instant response for indifference or even consider us a bit dull not knowing that it takes time for our brain to sort and process the somewhat muddled sound we receive All this means that we must educate our friends family and cowork ers and enlist their help sometimes repeatedly but in a manner that does not alienate them That calls for considerable finesse a good sense of humor and patience patience patience Making Speech Understandable in Difficult Settings Many of us can have trouble understanding speech even under ideal conditions and we frequently find that even the best technology and programming of our hearing devices does not totally help when we are trying to separate speech from the environmental noise sur rounding us Whether from an air cond
107. tic membership in the Hearing Loss Association of Oregon Individual membership costs just 35 00 per year For more infor mation about HLAA go to www hearingloss org or contact Hearing Loss Association of America HLAA 7910 Woodmont Ave Suite 1200 Bethesda MD 20814 Founded in 1979 the Hearing Loss Association of America HLAA is a volunteer led organization of people with hearing loss and peo ple who care about them HLAA is a membership organization with nearly 200 local chapters and state associations offices throughout the United States HLAA is devoted to the welfare and interests of consumers with any degree of hearing loss who are committed to participating in the hearing world 82 Deaf or Hard of Hearing Hearing Caller Dial quickly amp converse Connect amp easily communicate TY Voice to TTY 711 or 711 or f 800 735 2900 800 735 1232 How Relay gt Service Ss Works i Voice Carry Over VCO Speech to Speech STS The relay user types her conversation Talk with Talk with ease to the relay operator confidence 4 The relay operator then voices the relay user s typed message to the other caller 711 or 711 or 800 735 3260 877 735 7525 a Te 6 After the relay user types GA Go Ahead it is the other caller s turn to respond to the Hearing Carry Over HCO Espanol de Relevo Read listen amp type jTraducir de manera independently eficiente 711
108. tml Fiction Lodge David 2008 Deaf Sentence NY NY Penguin Group Vikram Seth 1999 An Equal Music London Phoenix House Please check the booklist on our website www hearinglossOR org for additional books and other materials Praise does wonders for our sense of hearing Arnold H Glasow 70 ADA ALD Assistive Listening Device ALS Assistive Listening System AT Assistive Technology Audiogram Audiologist Auditory Loop System BTE Captioned Telephone Captions CART Computer Aided RealTime Captioning CC Closed Captioned GLOSSARY Americans with Disabilities Act A device that transmits processes or amplifies sound usually a personal device with or without a hearing device ALSs are also sometimes called ALDs They improve the speech to noise ratio Usually used to mean an audio loop FM or infra red system installed in a large area Devices that assist people who have disabilities A record in graph form that shows the results of a hearing test A line for each ear shows the volume of sound that is required for a tone to be heard 50 of the time A health care professional who is trained to evalu ate hearing loss and related disorders including balance disorders and tinnitus and to rehabilitate individuals with hearing loss and related disor ders A system that transmits sounds as magnetic energy that is then picked up by the telecoil in a hearin
109. ugene OR 97401 Hearing Assistive Technology HAT ALDs Captions and Other Technologies That Make A Difference Current models of hearing devices hearing aids and Cls use pro gramming and specialized circuitry to reduce environmental noise relative to the desired sound for example speech Even then hear ing devices by themselves are not successful in all environments Hearing assistive technology HAT increases the effectiveness of hearing devices or substitutes a visual signal for the sound signal Assistive listening devices ALDs or systems can improve on the advanced technology of your hearing device by making the desired sound more understandable in suboptimal listening environments ALDs do so by effectively reducing the distance between the listener and the sound source reducing competing noise and diminish ing the effects of poor room acoustics Some examples of ALDs are given below e Auditorium Type Listening Systems Many auditoriums and the aters places of worship and other public places are equipped with special sound systems for people with hearing loss Essen tially they consist of a transmitting system which uses FM infrared or electromagnetic energy auditory loop systems These systems loops in particular must be used with a telecoil or a specialized hearing device FM and infrared systems can be used with or with out a hearing device but require using headphones or earbuds Personal Devices
110. ut these laws were not able to keep up with the fast paced technological changes that our society has witnessed over the past decade The new law contains groundbreaking protections to enable people with disabilities to ac cess broadband digital and mobile innovations the emerging 21st century technologies for which the act is named The CVAA is divided into two broad titles or sections Title ad dresses communications access to make products and services using Broadband fully accessible to people with disabilities For example smartphones will be required to be usable by blind and visually impaired people as well as people with hearing aids Title II of the accessibility act breaks new ground to make it easier for people with disabilities to view video programming on television and the Internet For example programs shown on television with captioning will be required to include the captioning when they are re shown on the Internet Both titles include provisions to ensure that people with disabilities have access to emergency information such as the next generation of 911 services and emergency information on the television For more information see www fcc gov guides 21st century communications and video accessibility act 2010 To file a com plaint use the online process www fcc gov accessibility complaints categories call 202 418 2517 or email dro fcc gov Some days we need support some days we have support to offer Joi
111. vice Except in a room that has a hearing or audio loop where a loop of cable surrounds a designated area usually a meeting room or audi torium and which generates a magnetic field picked up by a hear ing device fitted with a telecoil you will need to use a neck loop to pick up and transfer the signal to your hearing device s telecoil Many facilities do not provide neck loops or if they do the neck loops may not be strong enough for your hearing loss Therefore it is a good idea to have a personal neck loop preferably a powered 18 one to bring along to use with the ALD s they do provide A neck loop is not required when the area is equipped with an audio loop and you have a telecoil in your hearing device Some adjustment may be needed to get the greatest benefit from the telecoil Experiment and ask your hearing care provider for advice on how to use the telecoil in your hearing aid or Cl most effectively For example since telecoils are positioned differently in different hearing devices 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 us ing it and then practice Be sure you talk to your hearing care provider about the need to have a telecoil in your new Cl or hearing aid or having your current aids retrofitted It is also important to let them know the primary uses you will make of it which will d
112. you from getting your Cl programmed as often as you need it e The Cl manufacturers and the hospital you choose can help you determine the extent to which Medicare and or private insurance 31 will cover the CI device and implantation surgery Most people struggle when making the decision for a particular brand of Cl but once the decision is made most are happy be cause the results are life changing Cochlear implants are speech processors and since understanding speech is so important to communication and participation in all aspects of social life it is and should be on the top of the list of things accomplished by your Cl Anything beyond that is an added benefit to be cherished and enjoyed What you hear with a Cl may not sound normal at least at the beginning Instead what you may hear is an electronic or synthetic sound as part of speech sounds Over time this electronic sound becomes more and more normal as you use your Cl for everyday listening Everyone s experience with a Cl is different Many people may experience understandable sound when their Cl is activated or it may take weeks Keep in mind that your brain needs time to learn what you are hearing so keep your expectations and your hopes in balance it does get better Very few people report no improve ment at all Patience patience patience Your job is to make the decision of which type of Cl you want for yourself or your child Once this is done don t look b

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