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Washington State News for Hard of Hearing People

The official newsletter for Puget Sound District Umbrella of Self Help for Hard of Hearing People (SHHH)

Volume 7, Issue 1
Fall 1999

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SHHH and You

Medical technology keeps improving year after year. This has brought about a continuing increase in the cost of medical treatment and prescriptions. If it were not for insurance, many people would not be able to afford the medical help they require.

Hearing aid technology has also improved dramatically over the last ten years. Yet, many people cannot afford to purchase the ones that would give them the most benefit, since their insurance does not cover hearing aids.

For the past two years National SHHH has been urging our employed members to lobby their unions and employers to include the cost of hearing aids as part of their insurance policies. Once most of our employers and state agencies include hearing aids in their insurance policy, then National SHHH can urge Congress to mandate Medicare coverage.

SHHH needs more of our numbers to enact change. If you are not a National member, now is the time to join. Dues are $25 per person, $30 for two people living at same address, or $35 for families. You will receive the SHHH National Journal called HEARING LOSS which is published six times a year.

Make checks payable to SHHH National and send to:

SHHH Membership Desk

7910 Woodmont Ave #1200

Bethesda, MD 20814

If you prefer, you can send your national membership to WASA-SHHH (see address on page 8) and we will forward it to National for you.

Let all of us make hearing loss an issue of national concern. SHHH needs you. Please join today. You will be glad you did!! Thanks for your support.

President’s Comments

By

Gordon L Nystedt

Twenty years ago this past December 19th I suddenly lost my remaining hearing. Back then the TTY was just coming on the market. There was no captioning and no relay. Since I could not use the phone I either had to have someone make my phone calls, or do my business in person.

Today there are many ways to communicate. If you can no longer hear on the phone, you should consider using an optional method. Never should we rely our partner, children or friends for our communication needs.

There are probably few medical marvels that have restored people’s hope like the cochlear implant has. The cochlear implant was not an option 20 years ago. Today few people have to remain in a silent world. A child no longer has to grow up deaf.

If you can no longer use a telephone effectively with amplification, perhaps it is time for you check out the implant. Age is not a factor. If someone told you it would not help you because you have nerve deafness, get a second opinion. There is no need for anyone to remain isolated from family and friends because of hearing loss. Maybe you were informed five years ago that you still had too much hearing. Check again, as the standards have changed.

Never did I ever expect to use a voice phone again. Yet today all my calls are voice, thanks to the cochlear implant.

I have seen people come out of their isolation and rejoin the human race. Bitterness disappears and is replaced by smiles. They are once again part of family conversations and can attend church and hear. If you wish more information, contact me at address on page 8.

HEARING

CHALLENGED

By Penny Allen,

WA State SHHH Chapter Coordinator

Eventually you’ll get fed up with everyone nagging you to get your hearing checked and do something about it. Hopefully you’ll do it before you create worse problems than nagging. Untreated hearing loss results in marital conflicts, anger, resentment, isolation, depression…the list goes on. If you hear people talking but don’t understand what they’re saying, that’s often your first indication of a hearing loss.

Where do you start? You should make an appointment to see an ENT (Ear, Nose and Throat specialist), because your family physician is not trained in this area. An ENT will want to rule out any medical problem, like a tumor. Sometimes it’s a simple matter of wax blockage in the ear (but don’t count on it). Most likely you’ll be astounded to learn that he can’t do anything about your hearing loss or even tell you why you have it. He will probably smile, shake your hand, and matter-of-factly leave you with these four crushing words, “You need hearing aids.” Just remember—it’s not terminal.

The ENT will refer you to an audiologist, who will seat you in a soundproof booth and test your ability to recognize everyday words at different volumes, as well as to hear tones at varying frequencies. The results are recorded on a chart called an audiogram, which gives a “picture” of your hearing and helps to determine what kind of hearing loss you have. Frequently a first audiogram will show a mild hearing loss. This is not a time to jump up and down with joy and forget the whole thing. Being told you have a mild hearing loss is akin to your dental hygienist telling you that you have periodontal disease. Do something about it right away! The people who have the most trouble adjusting to hearing aids are the ones who wait the longest before wearing them. The longer you wait, the longer it will take to retrain your brain to understand—and yes, it really has a lot to do with the brain.

Where do you buy hearing aids? Although an ENT will refer you to an audiologist, you can also buy hearing aids from a hearing aid dispenser. An audiologist is a Masters or PhD level professional who is certified by the American Speech-Language and Hearing Association in evaluation, rehabilitation and diagnosis of hearing loss and hearing aid dispensing. A hearing aid dispenser, sometimes called a hearing instrument specialist, is state certified through a series of classes to provide hearing testing and hearing aid dispensing. The distinction doesn’t necessarily dictate the price, however. This is one product where prices vary widely for no apparent reason—even in the same town. For purposes of this article, I will refer to either person as a “provider.”

You want to purchase your hearing aids from someone who is reputable—possibly a person who is recommended by the ENT, or better yet, by someone else you know who wears hearing aids and is satisfied. Forget shopping mail order, because of some serious potential problems and lack of follow-up service. Mail order sales of hearing aids are illegal in our state anyway. I recommend not doing business with anyone selling only one brand of hearing aid, even if it’s a great hearing aid. No single hearing aid is suitable for all types of hearing loss, and you’re taking potluck that it will work for you. A good business will have several makes and models from which to choose and will provide full aftercare service. Never purchase hearing aids without first having an audiogram.

Are today’s hearing aids better? Absolutely! Hearing aids produced more than six or seven years ago amplified all sounds equally and were no help at all in noisy environments. Newer technology allows different sounds to be amplified separately, and loud sounds can even be suppressed, resulting in much better comprehension. Hearing aids today can have multiple programs, multiple microphones, and remote controls. Unless you’ve had your head in the sand, you’ve probably heard all the hoopla by now about the new 100% digital aids. Digital aids are touted to provide superior sound quality and much finer tuning to your individual hearing loss.

How do you know what to buy? You simply have to rely on the expertise of your provider to help you choose the best hearing aids for your particular hearing loss and lifestyle at a price you can live with. However, based upon my own experience and my work with other hard of hearing people, I would like to make some suggestions. I don’t believe you need to get the most expensive hearing aids on the market in order to hear better, but I do believe you should try to do better than conventional aids. Although digital aids are the latest rage, people with severe to profound hearing loss or poor speech discrimination may not be able to tell the difference in sound quality and may do just as well with high quality analog aids (which are also less expensive). Studies have shown that multi-microphone aids provide better comprehension in noisy situations, as opposed to single-microphone aids. I can attest to that, and this is one feature I wouldn’t want to be without. I also wouldn’t want to be without a strong telecoil. Many people are not even told about a telecoil, or else they’re told that they don’t need to worry about it. If you have more than a mild hearing loss, you should insist upon a strong telecoil. You will hear better on the telephone and will be able to access assistive listening devices. There is also some controversy about the use of a volume control. For the most part, this is not a standard feature of the all-digital aids. I, personally, can’t imagine not having a volume control, and I believe it is important for anyone with a severe to profound hearing loss.

What is a trial period? Your provider is required by law to issue a purchase agreement or contract for your hearing aids. It should contain all conditions of the transaction, and specify a length of time you can try your hearing aids before you become the permanent owner. It should inform you of your rights to cancellation and refund. It should include your warranty, which is your basic agreement with the manufacturer, and is also be backed by the provider. It should spell out what free services will be provided and for how long. You will have at least a 30-day trial period on your hearing aids. This is really not a trial to decide whether or not you need hearing aids—your audiogram already determined that. It’s a trial to confirm or deny that these specific aids are right for you. You need to work hard with your provider to get you “up and running” so you can make an informed decision on whether they are the hearing aids you want to live with. If you don’t, you may get stuck with aids that don’t meet your needs. During this time you will also want to develop a good rapport with your provider. If you don’t feel a “connection”— for whatever reason—give back the hearing aids, go to someone else, and start over. You want someone working with you who is caring, treats you with dignity and respect, and listens to your concerns about any hearing-related problems. You are dealing with far more important issues than simply buying hearing aids.

What is follow-up service? Very rarely are hearing aids optimally adjusted the first fitting, or the second, or even the third. Often the earmolds are too tight and hurt, or they’re too loose and you experience feedback (squealing). You may hear fine in the quiet of your provider’s office, but once you get out into the real world, you may not. You need to work with your provider and not throw up your hands in despair when something isn’t quite right, which it most likely won’t be initially. A commitment to return for check-ups and refinements to recently purchased hearing aids is so important for your success as a hearing aid user.

What are realistic expectations? Because of all the money you are spending on the latest technology (and especially all that seductive advertising!), you will naturally expect miracles from your hearing aids. The truth is that hearing aids won’t give you perfect hearing, and they certainly won’t eliminate background noise—normal hearing people can’t even eliminate it! The more severe your hearing loss, the more you will need to rely on speechreading skills and assistive listening devices. The secret to getting good results from your hearing aids is to wear them every waking moment after an initial breaking-in period (except for bathing, of course). Many people, especially those who live alone, seem to have a harder time adjusting to hearing aids because they wear them only for conversation. Even if it’s only you and your cat, you need to wear them or you’re doomed to failure.

I can’t think of anyone who has jumped up and down shouting, “Oh, goody! I can’t wait to get hearing aids!” Most of us want to spend as little money as possible, pick out the most inconspicuous aids, and get the whole thing over with quickly. The reality is (generally speaking) that the more money we spend, the better the aids will be; the larger the aids we get, the better we’ll hear; and the longer we take with follow-up appointments, the greater our success will be. Yes, hearing aids are very expensive, and your insurance probably won’t cover much of the cost. Medicare, unbelievably, won’t cover any of it—no matter who you are. You’ll just have to resign yourself to leaving less money to your kids. No doubt your kids would probably rather you spend it on hearing aids anyway. Better hearing is better quality of life now—for both you and them. Put your hearing first, and the rest will follow, including ridding yourself of the nagging about your hearing problem. Now you understand what it means to be hearing challenged.

Amplified Telephones

Having problems using a regular phone? Are you aware there are amplified phones available? You state you are aware but cannot afford to buy one. Are you aware that low income people can obtain an amplified telephone from the State of Washington at no cost to them? If you need more information contact us. Our mailing address, e-mail and phone numbers are on page 8.

Speech-Reading Classes

We have received several inquiries concerning the availability of speech-reading classes. Following are places that have been identified to us as offering classes:

University of Washington - Speech and Hearing Clinic.

Phone 206-543-5440. E-mail: sanborn@u.washington.edu. $10 per session; sliding scale based on ability to pay. Contact person is E. Sue Sanborn Ph.D.

Listen For Life Center – Virginia Mason. 206-341-0948. E-mail: audlli@vmmc.org. The class meets once a week for five weeks. Cost is $40 per 5 weeks session for Virginia Mason patients and $80 for non-VM patients. Each class is 1 1/2 to 2 hours. Contact person is Lisa Illich.

Bremerton/Silverdale Area. -S.K. Osborn, Speech-Language Pathologist offers six week classes “Hearing Impairment/Speech-Reading Management” 1 to 1 1/2 hours in length. One day per week. Spouse or friend can attend free. Phone 360-377-6620 or 9945. E-mail: skoslp@aol.com

Tacoma Area –Laura Day, Audiologist from Harbor Audiology in Gig Harbor offers speech-reading classes at TACID (Tacoma Area Coalition of Individuals with Disabilities) 6315 South 19th St, Tacoma. Phone 253-851-3932.

Attention Professionals:If you reside in WA State and offer Speech-reading classes, let us know and we will publish it in a future newsletter. We would like to have the following information:

1. Location of the class.

2. Day and time class is offered

3. Cost

4. Phone number contact

5. E-mail contact

The next newsletter will be mailed in November and will carry information for December, January, and February.

Newborn Hearing Screening

By Tom Littman, Ph.D. Virginia Mason

The annual Dreambuilder’s ball raised over $500,000 for the Listen for Life Center at Virginia Mason. A significant portion of this money has been used to purchase otoacoustic emissions (OAE) hearing screening equipment. This equipment is currently in use at five Virginia Mason sites. Because Virginia Mason is not a birthing hospital, a unique aspect of the program is that all screening is done on an outpatient basis.

Babies are being tested at three days of age, when the child is seen at the pediatrician’s office for his/her post-partum examination. Given that virtually all newborns return for their post-partum visit, it has been possible to screen a very high percentage of these babies. Screening is currently available in the Virginia Mason pediatric clinics downtown, at Sand Point, Mercer Island, and Federal Way. The placement of additional screening equipment at other sites is being considered.

The actual hearing screening is only the first step. Some of the funds raised at the Dreambuilder’s Ball are also being used to educate physicians and obtain additional staff, to provide the all-important support after a hearing loss has been identified. The goal is to provide the child’s family with all of the educational and management options available to them.

It is hoped that this screening program can help maintain momentum for establishing universal newborn hearing screening in the State of Washington. Thus far, the state has allocated $100,000 in support of newborn screening. This funding is not sufficient for actual newborn testing. However, it does indicate that the state has an interest in learning more about universal screening, for consideration of future funding. Until statewide funding is

available for universal hearing screening, The Listen for Life Center at Virginia Mason has taken the initiative to provide an early identification and intervention program, at no charge to its patients.

[Editor's note: SHHH congratulates the Listen for Life Center at Virginia Mason for offering this service at no charge to patients. If you are aware of other medical facilities that offer newborn screening at no charge, please let us know so that we can publish the information in a future newsletter. SHHH hopes that soon these test will be required by law. Wouldn’t it be wonderful if all babies with a hearing loss could be identified at birth? Then parents could immediately seek medical help to allow the child to grow up and function in the hearing world.]

SAFECO Field Offers

Assistive Devices

(And Much More)

By Gordon Nystedt

SHHH received an invitation from Kathy Johnson, Public Affairs Officer with the Public Facilities District, the government agency overseeing SAFECO Field, to attend its open house and test the assistive devices that would be available to the public. Several of our members decided to go and see what it was all about. I doubt any of us were prepared for the eye-catching beauty of the stadium.

I have been in other stadiums and doubt there is any stadium in this country that matches the shear beauty of SAFECO Field. It was a lovely day and the whole field was drenched in sunlight. We took the elevator to the 7th floor and walked down and around every floor from top to bottom. We were even allowed to walk through the Luxury suites. We noticed that every telephone on every floor was amplified; so if you need to make a phone call, you will not have to search.

The main purpose of our visit was to see what type of assistive devices and what accessories were being offered and how well they worked.

The assistive listening receivers available are the Comtek FM receivers. Once you arrive at the ballpark you will need to go to the Guest Service Centers, which are located across from section 128, 330 and in the Bullpen Market. You will need to leave a piece of identification, as well as sign out the equipment.

The only accessories available for the open house were headphones. At least they did not have just ear buds like you find in so many places. The head phones are of high quality. I informed Alexi G. Kelly, Director of Guest Relations for the Seattle Mariners, that they needed other accessories such as neckloops for people who use hearing aids with “T” coils and a few patch cords for Cochlear Implantees. She assured me that this would happen.

At first we were told that for the open house we would not be able to check out the equipment; that we would have to test it in the Guest Service Area. The equipment does not work well in that area. I experienced a lot of static. Don Pickens asked if we could leave our drivers license and take the receivers out into the seating area. Martha Fales had a neckloop with her and I had an implant patch cord. Everyone was able to test the units with the accessory they required. The Comtek system worked wonderfully in the seating area. The sounds coming from the PA system were very clear.

If you come to Seattle for a visit, you might want to attend a Mariner’s game. Be certain to go to the Guest area and pick up an FM receiver. With the use of FM I think you will be delighted at how well you understand. SHHH will be interested in how well the system worked for you. We will also be interested in how well the staff was trained in the use and upkeep of the equipment.

Our thanks go to SAFECO Field and the Mariners for their interest in people who are hard of hearing. It will be fun to go to a ball game and know that equipment is available to help us understand.

Next Spring we may plan a Hard of Hearing Day at the ballpark. Would you be interested in joining us?

Readers Have Their Say

Stethoscope Needed to Use With Hearing Aids

[Editor’s note: In our last newsletter we mentioned a nurse who was interested in locating a stethoscope that could be used without removing her hearing aids. We heard from three professionals. We are very pleased that professionals are taking the time to read our newsletter and responding to our reader’s concerns. If you have a question, ask us. We will post it in a future newsletter and see what our professionals have to say.]

Nancy Cambron, Audiologist, Veterans Medical Audiology, Seattle responds: “I’ve obtained amplified stethoscopes through Starkey. Unfortunately, I could not locate one that could be used in conjunction with hearing aids; but the scope from Starkey has an external microphone that you can switch to if you need to hear external sounds.”

Ann Hyman, MD, Edgewood, President HSDC, Responded through Steve Hillson, HSDC. Steve responds: “Starkey does make an amplified stethoscope, but some people complain because the amplifier is at the end of the tube and picks up a lot of outside noise, like the hand of the person using it.”

Lori Walker, Audiologist, Pacific Hearing and Speech Services in Everett responds: “ Depending on the style of hearing aids she uses, (BTE, ITE, ITC), Westone makes a custom earmold which is specifically designed to couple a Canal (ITC) hearing aid to a stethoscope. This is a fairly specific application and can be ordered by any Audiologist who has an account with Westone… Amplified stethoscopes are fairly readily available as an assistive listening device. It would necessitate, however, removal of the hearing aids. PS. The exact style number of the Westone earmold is #28.”

John Gimbell, Audiologist, ENT Clinic Spokane sent a Tech tips page from Westone.

Thanks to all of you for your feedback.

Taking Control

By Karen Utter, President

SNO-KING SHHH Group

There are many theories about leading the good life, and motivational speakers and psychologists have their own ideas about how one should accomplish things or do more. One theme heard over and over again is people need to take control of their lives and own issues. How many of you take control of your hearing? A recent article in The Hearing Journal stated that making the decision to be in control of our hearing is the number one predictor of how a person will do with hearing aids. Often people have their hearing checked and purchase hearing aids but do not use them. Why is this so? Like other issues in our life, control seemed to be the deciding factor between success and failure. Those who actively acknowledged their hearing difficulties and were willing to do something about it, to make changes in their own lives and ways of doing things or relating to others were successful. Those who didn’t take control of their own issues of communication difficulties, continued to complain, blame others for poor communication, stopped doing things, and going places because they found being in larger groups was uncomfortable, did not do well.

Another interesting fact from the study is that gender plays a part in this issue of control. Men seem more likely to have trouble taking control of their communication needs. Perhaps their spouse has always taken care of their social agenda, or for some other reason they are not in tune with social interactions on a regular basis. The problems of hearing loss continue to be studied and the answers are complex, but one thing that remains the same in terms of advice is belonging to a Self Help group such as SHHH is mentioned as one of the strongest things one can do in dealing with hearing loss.

At an SHHH meeting you are among friends who understand and support you as you go forward to make changes in your life. We all want you to be able to deal with your hearing loss and be able to know what your options are. Through education, advocacy for people with hearing loss, and the opportunity for self help, SHHH is, without a doubt, a great opportunity to learn and test new understandings and behaviors.

We encourage all people with hearing loss to join National SHHH and receive their bi-monthly magazine Hearing Loss. You will be helping yourself as you gain knowledge and understanding of you own hearing issues, as well as supporting the national advocacy and outreach of the only national organization devoted specifically to those of us who are hard of hearing. Please join today and make that key decision to help yourself. We'll hope to see you at an SHHH meeting soon.

 

Thanks to “Get Up and Go” Magazine

 Our heartfelt thanks to Barbara Brachtel, editor of Get Up and Go, June 1999 edition, for the fine coverage she gave SHHH. We received 20 inquiries about SHHH as a result of her article and her wonderful comments in the editorial of the same issue. It is our hope that we have been able to provide educational support to some of those who contacted us. Her editorial was right on the mark. I am not sure what the best way is to get people to understand that hearing loss is nothing to be ashamed of. When we isolate ourselves and cut ourselves off from the very people who love us the most, we not only harm our own lives but the lives of those around us. Again, thanks to Ms. Brachtel for the wonderful support she has given to us.

 

WASA-SHHH

Activity Around the State

Washington State Association of Self Help for Hard of Hearing People (WASA-SHHH) is in the final organizational stages. All National SHHH members in our state will be receiving a ballot. If you do not receive it by October 10, please advise so that we can follow-up and see what went wrong.

What committees would you like to see WASA-SHHH set up? Would you like to serve on the committee? You do not need to be on the board or attend any local groups to become involved. All it requires is that you be a national member and have access to e-mail since most of the committee work will be done by e-mail so that we can involve people all across the state. If you do not have e-mail but have a family member or friend who can relay your message, just give us their address. Would you like to be involved in any of the following?

Access (Serve on State Boards and State Committees.)

Outreach (Man a booth at a health fair, or other outreach programs.)

Finance

Fundraising

Hard of Hearing Children

Communication (amplified, VCO, and Cellular phones.)

Entertainment and Access. (Check out equipment at theaters, opera, ballgames, churches, etc.

Help with folding of newsletter and writing articles.

Others? ________________

Are you already serving in some capacity on an advisory committee? If so, please let us know which committee and how long you have served.

Remember, to become involved in WASA-SHHH you must be a National SHHH member residing in WA State.

If you are not interested in serving on a committee but would like to receive e-mail updates concerning activity around our state (such as captioned movies, special meetings, legislation that affects hard of hearing people, updates from the national office, etc.), please send us your e-mail address so I can keep you informed. We will be establishing an e-mail bulletin board for all National members in our state who wish to be kept informed.

First Annual Meeting for WASA-SHHH

Our first annual meeting for WASA-SHHH will be Saturday, October 23rd at 10:00 a.m. at The Hearing, Speech and Deafness Center, 1620 18th Ave., Seattle. The board meeting will follow. Bring food to share between the two meetings. This meeting is open to all SHHH members. You do not need to be a member of a local or a candidate for the board to attend. If you plan to attend, please advise us so we know how many to prepare for.

VCO Phones

A VCO (Voice Carry Over) phone allows you to make a voice call to another party, even though you cannot hear well enough to use a voice phone. You place your call through WA State Sprint Relay. You can do all of your own talking but the operator will type back to you what is being said. VCO phones are available for low income people free from WA State. If you have a VCO phone, Sprint has set up a special phone number just for you. The number is 1-800-833-6386.

Do you need special training on how to use a VCO phone? If so, contact us. If enough people have an interest, we will set up a special VCO training day to show you how you can still communicate for yourself, even though you can no longer understand the spoken word.

 

Gordon L Nystedt

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