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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 6, Issue 2
Winter 1998 - 1999

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SHHH and You

The holiday season is with us and we will soon be selecting gifts for our friends, loved ones, and even for ourselves.

If the person has a hearing loss and does not belong to National SHHH, why not give them a one year membership in National SHHH? They will receive the SHHH Journal, HEARING LOSS, six times a year. The magazine is filled with valuable information that could help that person better cope with his/her hearing loss.

The September/October issue had an excellent article titled "What is Universal Newborn Hearing Screening?" It also contained an excellent update on cochlear implants.

If you are not a member of National SHHH, give yourself the perfect gift by joining National. Dues are $25 per person, $30 for two people living at same address, or $35 for families.

Make checks payable to SHHH National and send to:

SHHH Membership Desk

7910 Woodmont Ave. #1200

Bethesda, MD 20814

If you are ordering a gift membership, give them your name and tell them you are purchasing it as a gift for & and then give them the person's name and address.

Please do your part in making hearing loss an issue of national concern. Join National SHHH today. Together, we can improve the lives of all hard of hearing people.

If you prefer, you can send your national membership and gift request to the Umbrella (see address on page 8) and we will forward it to National for you.

 

Coordinator's Comments

By

Gordon L. Nystedt

 

Recently I attended a convention in Wenatchee. A hotel official stopped by our SHHH booth and we talked about the needs of hard of hearing people. He stated that they have had a suitcase of assistive devices for those with a hearing loss, but so far not one person requested to use them.

I have been to SHHH meetings where assistive devices are available to help us hear better but see few people making use of them. I keep asking myself, "Why?". I wish I knew the answer.

Churches, theaters, city buildings, courts, hotels, etc. now have assistive devices to accommodate our needs. Yet, many times, the devices that could make listening much more enjoyable go unused. People have told me that they do need the devices some times but not for every speaker. Why take the chance that you may have difficulty understanding a speaker? I believe that if you made it a habit to use the devices, you would find out how much more relaxing it is to sit through a meeting that may have one or more speakers.

When traveling, be certain to ask for the devices at the time you make your reservation. If you do not, they may not be available when you arrive. Some chain motels keep the devices in a central area and have to order them from storage. Need an amplified phone or a TTY? Do you need captioning for your TV? Need a visual smoke detector, vibrating alarm, or door knocker? Make your stay much more enjoyable by ordering in advance so that they will be available and set up when you arrive.

Implanted Hearing Aids

By Carol Brazil, Audiologist,

Virginia Mason Medical Center

The Listen For Life Center at Virginia Mason is pleased to be participating in the FDA clinical trial for the Symphonix Vibrant (TM) Soundbridge implantable hearing aid. The Vibrant Soundbridge is a new development in medical electronic technology designed for individuals with moderate to severe sensori-neural hearing loss who are dissatisfied with their traditional hearing aids. The Vibrant Soundbridge converts sounds picked up by an externally worn Audio Processor to vibrations which are delivered to the middle ear bones. The Audio Processor is worn slightly above and behind the ear and magnetically held to the internal, surgically implanted part of the device. This leaves the ear canal open, which should reduce problems with feedback, earmold discomfort and the unnatural resonance of the patient's own voice which often occurs in an ear canal with a hearing aid. The Vibrant Soundbridge is an investigational device, the benefits of which are being evaluated in this clinical trial. Candidacy evaluation begins with a screening of the audiogram by Symphonix Devices, Inc. Interested individuals should call Symphonix directly at 1-800-833-7733 for pre-screening.

[Editor note: We are very interested in your thoughts on this hearing aid. If you are selected to be implanted, we hope you will share your story with us so that we can publish it in a future edition. Normally, we do not publish anything on any hearing aid except with letters from our readers. But since this is a research project, we wanted to share the information with you and hopefully learn from your experiences. Thanks.]

 

 

BEING FEARLESS

By Penny Allen

Assistant State SHHH Coordinator

There was a time when I was fearless. It was when I was a little girl growing up on a farm in Ohio. Each day revealed new adventures, and it seemed that no challenge back then was too great. The old farm abounded with a myriad of interesting places to explore and animals to befriend. Fences were built to be scaled, and tall trees existed to be climbed. I still smile, remembering the uproar I caused the day I climbed the old windmill.

When I reached adulthood, I became a responsible person. While a job took priority in my life, that sense of fearlessness I had experienced in my childhood receded. Soon came a husband and then the children, which made me even more responsible.

My hearing loss struck when I was in the prime of my life-40 years old. I didn't want to face it or make any accommodations for it. I kept thinking, irrationally, that it was all a mistake and would just go away if I didn't acknowledge it. Each time my audiogram took a downward turn, I squashed the rising fear. My inclination was to shut myself off from other people, both physically (whenever possible) and emotionally (nearly always). I made so many communication mistakes that my self-esteem was shaky. I just knew that everyone was thinking I was stupid (and of course I couldn't tell them the real reason they were thinking that, could I?). By the time I simply could no longer ignore the devastating effect my hearing loss was having on every aspect of my life, I was at the brink of all-encompassing despair.

Reflecting back on that time-just a few years ago, really-I see a series of things happening that slowly dragged me out of that dark abyss in which I had wallowed for ten desperate years. It started with professional counseling. I became aware that I had really believed that I could control my hearing loss-that I was somehow responsible (because after all, I was a responsible person, wasn't I?). Once I gave up trying to control everything, I began to accept reality. At that point, I also made a decision to retire from a job that was draining me and creating a lot of frustration and stress. My life got better.

Less than a year later, I came to SHHH thinking I could help others, not realizing I still had a long way to go myself. I've grown through SHHH in ways I could never have done on my own. I learned coping skills. I became honest about my hearing loss, both to myself and to other people. Saying it and living it are two different things. The only way I could be sure I wasn't going to backslide and hide again was to cut my hair very short and paint flowers on my hearing aids.

I learned to become more assertive about my communication needs. What used to be uncertainty and challenges in how to handle difficult situations have now become commonplace solutions. I've learned to speak up when I don't understand, or to relocate myself so I can see faces better. I've learned about creating environments conducive to better hearing or asking restaurant management to turn down loud music so I can understand a conversation while I'm eating.

I have gained immeasurable independence through the use of assistive devices. I make use of lights and vibrating alarms to alert me; I use strong amplified telephones (including cellular) so I can stay in touch with friends, family, and businesses; I use an FM system in restaurants, meetings, or at any event where I want to participate.

I continue learning about hearing loss, the daily advances in the field of hearing health, and about options to deafness, so I can function in the hearing world and stay connected. I realize now that what kept me in fear for all those years was simply ignorance. Once I understood what was happening to me--and what was likely to happen--the fear evaporated.

SHHH has led me down a different path than I was taking before my hearing loss started. I am much more involved in people and issues today, instead of things. I've made many new friends and become an advocate for people with hearing loss-no small feat for a person who hid from it. I try to focus my energy on promoting access for hard of hearing people and on benefiting those who are still in denial, as I once was. There's a sense of adventure back in my life today, and I don't see any challenges as insurmountable. Well&hellipmaybe windmills.

Southern Caribbean Cruise

 

Bette Thompson, an SHHH member, who works with a travel agency and has put together a 7-day Caribbean cruise that will offer seminars on new developments in Hearing and Balance Disorders. Featured speakers will be Larry Duckert, MD., Ph.D. and Tom Rees Ph.D. Both are associated with the Virginia Bloedel Hearing Research Center at the University of Washington

Participants will fly from Seattle April 25th to San Juan, Puerto Rico to board the ship, Royal Caribbean's Monarch of the Seas. The ship will visit St. Thomas, Virgin Islands, Martinique, Barbados, Antigua, and St. Maarten, then return May 2nd to Puerto Rico for the flight home.

If you would like more information, please contact Mary Jacob e-mail: Travpros!Mary@attmail.com

Phone 206-523-0990 or 1-800-523-8559 Ext. #231 or Fax. 206-323-7253.

[Editor's note: I have tried to determine if this cruise is totally accessible for hard of hearing people. As of press time I am unable to determine if that will be the case. I recommend that if you have specific needs, you inform them of your needs and receive confirmation that they will be supported prior to sending in your funds. Dr. Rees states there will be devices available for the lectures.]

 

Meniere's Disease

 

[Information obtained from American Academy of Otolaryngology & Head and Neck Surgery, Inc., One Prince Street, Alexandria, VA 22314]

What is Meniere's Disease?

Meniere's disease, also called idiopathic endolymphatic hydrops, is a disorder of the inner ear. Although the cause is unknown, it probably results from an abnormality in the fluids of the inner ear. Meniere's disease is one of the most common causes of dizziness originating in the inner ear. In most cases only one ear is involved, but both ears may be affected in about 15% of patients. Meniere's disease typically starts between the ages of 20 and 50 years. Men and women are affected in equal numbers.

What are the Symptoms?

The symptoms of Meniere's disease are episodic rotational vertigo (attacks of a spinning sensation), hearing loss, tinnitus (a roaring, buzzing, or ringing sound in the ear), and a sensation of fullness in the affected ear. Vertigo is usually the most troublesome symptom of Meniere's disease. It is defined as a sensation of movement when no movement is occurring. Vertigo is commonly produced by disorders of the inner ear, but may also occur in central nervous system disorders. The vertigo of Meniere's disease occurs in attacks of a spinning sensation and is accompanied by dysequilibrium (an off-balance sensation), nausea and sometimes vomiting. The vertigo lasts for 20 minutes to two hours or longer. During attacks, patients are usually unable to perform activities normal to their work or home life.

Sleepiness may follow for several hours, and the off-balance sensation may last for days. There may be an intermittent hearing loss early in the disease, especially in the low pitches, but a fixed hearing loss involving tones of all pitches commonly develop in time. Loud sounds may be uncomfortable and appear distorted in the affected ear. The tinnitus and fullness of the ear in Meniere's disease may come and go with changes in hearing, occur during or just before attacks, or be constant. The symptoms of Meniere's disease may be only a minor nuisance, or can become disabling, especially if the attacks of vertigo are severe, frequent, and occur without warning.

How is the Diagnosis Made?

The physician will take a history of the frequency, duration, severity, and character of your attacks; the duration of hearing loss or whether it has been changing; and whether you have had tinnitus or fullness in either or both ears. You may be asked whether there is a history of syphilis, mumps, or other serious infections in the past, inflammations of the eye, an autoimmune disorder or allergy, or ear surgery in the past. You may be asked questions about your general health, such as whether you have diabetes, high blood pressure, high blood cholesterol, thyroid, neurologic or emotional disorders. Tests may be ordered to look for these problems in certain cases. The physical examination of the ears, and other structures of the head and neck is usually normal, except during an attack.

An audiometric examination (hearing test) typically indicates a sensory type of hearing loss in the affected ear. Speech discrimination (the patient's ability to distinguish between words like "sit" and "fit") is often diminished in the affected ear. An ENG (electronystagmograph) may be performed to evaluate balance function. This is done in a darkened room. Recording electrodes are placed near the eyes. Wires from the electrodes are attached to a machine similar to a heart monitor. Warm and cool water or air are gently introduced into each ear canal. Since the eyes and ears work in coordinated manner through the nervous system, measurement of eye movements can be used to test the balance system. In about 50 % of patients, the balance function is reduced in the affected ear. Other balance testes, such as rotational testing or balance platform, may also be performed to evaluate the balance system.

Other tests may be done! Electrocochleography (ECoG) may indicate increased inner ear fluid pressure in some cases of Meniere's disease. The auditory brain stem response (ABR), a computerized test of the hearing nerves and brain pathways, computed tomography (CT), or magnetic resonance imaging (MRI), may be needed to rule out a tumor occurring on the hearing and balance nerve. Such tumors are rare, but they can cause symptoms similar to Meniere's disease.

What treatment will the Physician Recommend?

Diet and Medication

A low-salt diet and a diuretic (water pill) may reduce the frequency of attacks of Meniere's disease in some patients. In order to receive the full benefit of the diuretic, it is important that you restrict your intake of salt and take the medications regularly as directed.

Anti-vertigo medications, e.g., Antivert (meclizine generic, or Valium (diazepam generic) may provide temporary relief. Anti-nausea medication is sometimes prescribed. Anti-vertigo and anti-nausea medications may cause drowsiness.

Life style

Avoid caffeine, smoking, and alcohol. Get regular sleep and eat properly. Remain physically active, but avoid excessive fatigue. Stress may aggravate the vertigo and tinnitus of Meniere's disease. Stress avoidance or counseling may be advised.

Precautions

If you have vertigo without warning, you should not drive, because failure to control the vehicle may be hazardous to yourself and others. Safety may require you to forego ladders, scaffolds, and swimming.

When is Surgery Recommended?

If vertigo attacks are not controlled by conservative measures and are disabling, one of the following surgical procedures might be recommended:

The endolymphatic shunt or decompression procedure is an ear operation that usually preserves hearing. Attacks of vertigo are controlled in one half to two-thirds of cases, but control is not permanent in all cases. Recovery time after this procedure is short compared to the other procedures.

Selective vestibular neurectomy is a procedure in which the balance nerve is cut as it leaves the inner ear and goes to the brain. Vertigo attacks are permanently cured in a high percentage of cases, and hearing is preserved in most cases.

Labyrinthectomy and eighth nerve section are procedures in which the balance and hearing mechanism in the inner ear are destroyed on one side. This is considered when the patient with Meniere's disease has poor hearing in the affected ear. Labyrinthectomy and eighth nerve section result in the highest rates for control of vertigo attacks.

Other operations or treatments may be advised in some cases. If surgical treatment seems to be needed, the risks and benefits should be thoroughly discussed with your surgeon. Although there is no cure for Meniere's disease, the attacks of vertigo can be controlled in nearly all cases.

Hereditary Hearing Loss

The Virginia Merrill Bloedel Hearing Research Center at the University of Washington may begin a research project on heredity and hearing loss. Details are not yet available. They are hoping to have the details worked out in time for their annual conference on March 6th. Mark your calendar for that date. It will be held at the U of W. Details will be available in our Spring newsletter.

Amplified Telephones

If you are low income and need an amplified telephone, you may be able to receive one from the state of Washington at no charge to you. If you need further information, please contact the SHHH Umbrella. See Page 8 for e-mail or phone numbers.

 

Readers Have Their Say

Enjoyed Research Project

Betty Ruble, Auburn, writes:

Really enjoyed your last newsletter.

As you already know, I participated in the study on hearing aid processing, called compression/transposition ratios; i.e., soft sounds relative to loud sounds. Focus was on identifying consonants which are, seemingly the most difficult to absorb. I enjoyed my sessions with Pamela Sousa at the U of W. Of course, I was in the senior category.

Your comments on senior/retirement centers are so true. I volunteer at our local senior center and know that there is so much more I am capable of doing, but my continuing hearing loss inhibits me all the way around. Older citizens seem to have acquired these little, bitsy voices or they shout! More fun! We have an amplifying system, but in classes and meetings, I am lost. Cannot hear any input, only the speaker. If it weren't for "passing the mike" at our local SHHH meetings, we would be in the same spot. And, this to me, dampens the meeting's spontaneity. But, what else can we do?

They do listen to me at my senior center. I talk SHHH at every opportunity.

Enjoys Phonak Hearing Aid

Earl T Chamness, Concrete, writes:

Please send me the latest information about Self Help For Hard of Hearing People.

I am a WW II Veteran under care of Veterans affairs and just received a new hearing device called Phonak Piquant 2 PA. Which has been a wonderful help.

Enjoy Newsletter

John and Dorrie Morrison, Mount Vernon, write:

Our daughter Shellyrae Murphy is the Activities Director at The Hearthstone and has introduced us to your newsletter. We were so impressed and looking forward to attending the November meeting about "Balance and Dizziness."

My husband who has a severe hearing loss in both ears has had a problem with dizziness, so we will be interested in this information. Thanks so much.

Thanks For Great Service

Patricia Ann Davis, Vashon Island, writes:

I just want to take a moment to thank you for the great service you do for your "subscribers." Not only do you provide a great newsletter full of timely information, but you also notify members of programs in the area which might be beneficial. We would most likely have no other way of hearing about these programs.

I am particularly grateful for the information provided in the Winter 97-98 newsletter. I attended the U of W conference and picked up a lot of valuable information. I was also able to participate in one of the U of W Audiology studies. What a great experience!

Thanks again for your super newsletter.

Reprint Articles

Jean Puffer, Oakland, CA Writes:

At the National SHHH meeting in Boston, I picked up your summer edition and was impressed with the articles. Please put me on your mailing list.

I'm co-editor of our East Bay SHHH group newsletter. On occasion, I'd like to quote from your newsletter and request permission.

[Editor's note: Any information may be reprinted as long as the total article is used, and credit is given to the SHHH Washington State News for Hard of Hearing People newsletter.]

Cellular Telephones

Emily Mandelbaum, Port Townsend, writes:

Your coverage of cellular phones in the newsletter was wonderful & and timely for me. I humbly admit to making fun of and criticizing people driving around with cellular phones apparently glued to their ears and one hand on the wheel. A few weeks ago we got a notice that AAA Washington was offering a cellular phone with a one touch connection to AAA Emergency services. I thought of our experiences on Forest Service dirt roads during hiking and camping trips, particularly one breakdown when we had to wait for hours for someone to pass by.

I was doubtful, but ordered the phone anyway. Sure enough, although I could understand with a struggle holding the thing up to my microphone, sound was lousy and I could not imagine using it with a strange voice in a situation where I would be rattled and there might be plenty of background noise. It did have volume control which might make it easier for people with mild losses, but would probably be difficult for those with aids. My husband found the sound clear and reception good. I let AAA know that clarity and background noise are the problems.

[Editor's note: In our Fall edition Penny Allen had an article and stated that Beltone in Southwest Washington in Longview carried the Audex Cellular phone but stated she did not have the phone number. I received a call from Randy Bishop in Centralia. He states that people can call 1-800-533-2165 and can order the phone for pickup at most of the Beltone offices south of Olympia.]

Gordon L Nystedt

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