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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 5, Issue 2
Winter 1997-98

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SHHH and You

Would you like to try out different hearing aids to see if they help you? You probably have heard about the many different assistive devices. Would you like to try them to see if they might help you in places with background noise? Ever been to the Boston area?Self Help for Hard of Hearing People (SHHH) will be holding its 1998 annual convention in Boston on June 11-15th. Plan your vacation now to coincide with this event.

If you have never been to an SHHH convention, come and enjoy yourself. You do not need to worry about not understanding. The convention offers all types of communication assistance to meet your needs. There will be over 50 exhibitors for you to talk with and test their products. No pressure will be placed on you to buy anything. It can truly be the experience of a lifetime.

If you are not a member of National SHHH, you are urged to join. Membership dues are $25 for an individual, $30 for two people at the same address, and $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 and send your request to:

SHHH
7910 Woodmont Ave., Suite 1200
Bethesda, MD. 20814

If you prefer, you can send your check to the SHHH Umbrella (see address on page 8) and we will forward it to National SHHH for you.Join today! You will be glad you did!

Coordinator's Comments

by Gordon L. Nystedt

Back in the early 1980's when I was totally deaf, I was looking for something that would give me hope. One day I saw a letter in an Ann Lander's column from a person looking for help with her hearing loss. Ann told the person that she had good news for her, and then proceeded to tell about SHHH. This was the first I had ever heard of the organization. I wrote to them and immediately joined. It was through SHHH that I learned about the cochlear implant which completely changed my life. Once again my life had real meaning and purpose.

Today I hear from so many who have also found meaning and purpose by doing something about their hearing loss. Through the miracle of cochlear implants and advancements in hearing aids and assistive devices, they no longer have to withdraw into a shell of their own.

Washington State SHHH has come a long way in the last few years. If you have not attended a local meeting or been involved, we urge you to give us a try. Please refer to the Affiliates in Action section on pages 6 and 7 to see some of the outstanding programs lined up for the winter months.

Don't let your hearing loss rob you of your ability to enjoy your loved ones and friends. Isolating ourselves tends to lead to loneliness. Loneliness can lead to bitterness. Learn about the things you can do to improve your own life. If you have any questions, contact us. We are here to assist you. See page 8 for phone number, e-mail, or address.

SHHH Receives Community Award

The Hearing Speech and Deafness Center (HSDC) in Seattle recently held its 1997 annual meeting. They state; "Each year the Hearing, Speech & Deafness Center salutes outstanding individuals and organizations which enhance the quality of life for people who experience hearing loss, speech and language impairments, or who are deaf." This year its Community Leadership Award was awarded to SHHH. The award reads as follows:

"Community Leadership Award - 1997
Self Help for Hard of Hearing People
Puget Sound District Umbrella

"For promoting personal and public education about hearing loss and its effects on family, friends, and colleagues, and taking a leadership role in advocating assistive technology for the individual, home and workplace."SHHH appreciates HSDC's recognition. We are doing our best to reach out and let people with hearing loss know they can live and function in a hearing world.

Each year HSDC has provided SHHH with a free booth at its Hearing Health Fair. It has also provided many of our locals with speakers from its staff.

Our readers have visited its assistive device store and learned about the items available to help with background noise as well as listen to the TV without turning the volume too loud for others.

Many of the phone calls I receive are from people who were referred to us by HSDC. We are appreciative of its effort to improve the life of hard of hearing people and by telling them about SHHH. Thanks!!!!!

Serving On A Jury

Sometime during our lifetime we are going to be asked to serve on a jury. This is going to be a very difficult decision for many of us with hearing loss. We want to do our duty and yet we are not certain that we will be able to follow the proceedings.

If you are called for jury duty, you have a right to expect that you will be provided with the equipment you will need to hear and understand. Some people may require the help of real-time captioning. Others might want assistive listening devices, while yet others may need a combination of the two. You will not always see the face of the person speaking. If you require lip-reading to understand, real-time captioning will probably best meet your needs. It is important that you make your needs known as soon as you receive your request.

If the court tells you they have assistive devices, you might want to make an appointment to check the equipment out before the court date. Some courts have devices that might not be compatible with your needs. Most courts will probably be using Infrared systems. If they do, and you require the use of your hearing aids along with the receiver, be certain they have the type that will accept a neck loop. If you have a cochlear implant and can understand speech without lip-reading, you will need a receiver that will accept your patch cord.

The primary thing you should never do is hide your hearing loss. This is no place to bluff. . Every defendant is entitled to have a jury that understands the testimony. If you do not understand every word, then you should immediately notify the court. If you were the defendant, I am certain you would want the members of the jury to do the same for you.

We have not heard from some of you in over two years. If you want to continue to receive this newsletter please be certain to fill out the coupon on page 8 and send it in. Thanks

Meniere's Disease

Meniere's disease is characterized by multiple symptoms, all associated with excessive fluid in the inner ear involving both the hearing and balance organs. Excessive fluid in the cochlea (hearing organ) is known as cochlear hydrops. Excessive fluid in the semicircular canals (balance organ) results in dizziness and is known as vestibular hydrops. Almost all Meniere's patients have both cochlear and vestibular hydrops.

The symptoms of Meniere's are dizzy spells (vertigo) associated with hearing loss, tinnitus, and a feeling of fullness in the ear. These spells occur to varying degrees and last from 20 minutes to a full day. About 80 percent of patients with Meniere's experience the problem in only one ear. Meniere's can occur at any age but it most frequently begins between the ages of 30 and 50.

The cause of Meniere's is unknown. Possible contributors are stress, excessive salt intake. and occasionally, endocrine problems, such as low thyroid function, abnormal glucose (sugar) metabolism, or an inability to handle fats (high cholesterol and/or triglycerides.) Uncommon disorders that mimic Meniere's are auto-immune labyrinthitis, syphilis, head injury, or viral infection of inner ear.

Following are a few of the items recommended for medical management:

* No smoking
* Low sodium (low salt) diet
* A diuretic may be advisable
* No caffeine
* Stress avoidance
* Watch for food allergy

[Editor's note: Information for this article was obtained from a pamphlet produced by the Virginia Merrill Bloedel Hearing Research Center at the University of Washington. This brochure and information about the Research center can be found on the internet at web site:weber.u.washington.edu/~hearingor by calling 206-616-4105. ]

Cochlear Implants

If a person became deaf 20 years ago, there were few options available, except to learn sign language and become part of the deaf community. Today thousands have found renewed hearing through the miracle of the cochlear implant. Rocky Stone, the founder of SHHH and Donna Sorkin, our current Executive Director have implants . Many of our WA State leaders also have them. They include

Gordon Nystedt, SHHH WA State Coordinator; Merilyn Cooke, Co-President of the Lake Washington Chapter; Dorothy Wood, President of the Tacoma Chapter; Joyce McDaniel, President of Port Angeles Group; Jim Brown, President of Skagit Group; and Karen Utter, President of the SNO-KING Group.

Thousands of children are now being implanted which will allow them to grow up and function in a hearing world.

Virginia Mason Audiology is planning a possible implant social on Sunday, January 25, 1998. If you are thinking of an implant for yourself or your child, or already have an implant, and think you might want to attend, please let Gordon Nystedt know so he can send you further details as they become available.

Gordon Nystedt publishes an implant newsletter.

If you were turned down in the past for having too much residual hearing, you might want to check with your implant center again. This is especially true if you can no longer understand on a amplified telephone.

Did your insurance company turn you down? Many are revising their regulations and now allowing for the implant. To learn more, talk with someone who has an implant.

Hearing Aid Research Candidates Wanted

Pamela E Souza, Ph.D., CCC-A, Virginia Bloedel Hearing Research Center at the U of W is looking for candidates willing to help her in her research of compression hearing aids.

Dr. Souza states: "The two projects currently under way in the lab focus on new hearing aids which use compression (usually called wide dynamic range

compression, where the amount of amplification automatically adjusts, based on the loudness of the sound). Although hearing aid companies tell us that this new processing is superior to previous types, research results have been mixed. I am interested in the effect of these processing schemes on cues for speech understanding, whether they are more suitable for some listeners than others, and how to determine the best type of hearing aid processing or combination of hearing aid settings for each person.

"I have several studies planned in this area. Data collection is beginning now for the first two studies, and will continue until enough people have agreed to participate. Other studies will follow later. Which study is suitable for which participant depends on the type of hearing loss, the age of the participant, and their own preferences for scheduling. I will conduct a free hearing test on anyone interested in participating who does not have a recent audiogram (within 6 months).

"One of the current studies requires only a single, 2 hour visit. For this study, the participant will be seated in a sound-proof booth and will hear a recording of sentences which have been processed by different types of hearing aids. The sentences will be played through headphones. In this project, I am interested in both how well the listener can understand the sentences, and in her/his judgment of how the sentences sound. The second study requires a series of visits (I'm estimating 3-6, although the exact number will depend on the individual.). For these studies, the participant will be seated in a sound-proof booth and will hear a series of nonsense sounds, which he/she will identify by pressing a button out of a series of choices. In this project, I am interested in how well listeners of different ages can use the information provided by new hearing aid processing schemes. (There is some evidence that as we get older, we become less efficient in extracting information from speech).

In all cases, participants would need to come to UW. Unfortunately, the equipment is not portable. I will provide a parking pass and an hourly rate ($8-10/hr. depending on the project)."

For more information, please contact Dr. Souza Phone 206-543-7829 or e-mail: pzouza@u.washington.edu

Virginia Merrill Bloedel Hearing Research Center Annual meeting

On March 14, 1998, the Virginia Merrill Bloedel Hearing Research Center will present "Ears, Hearing, and Beyond," a one-day conference for the general public to learn about how the ears work, what damages hearing, hearing aids, coping with hearing loss, assistive devices, cochlear implants, and inner ear hair cell regeneration research.The conference will be held in the HUB building on the University of Washington campus. FM system will be provided by Williams Sound and Real-time captioning by Else Gale. Details will be provided in the Spring newsletter.

[Editor's note: Linda Howarth, Virginia Merrill Bloedel Hearing Research Center has involved SHHH over the past year trying to obtain information on what our members are interested in. We are very grateful to her and Dr. Gates for involving us in the planning of this event. We are also grateful to them for providing so many excellent speakers to our SHHH locals throughout the Puget Sound Area.]

Readers Have Their Say

Eliminating Feedback

by Maxine Atlas, Seattle

"I recently purchased a Phonak Pico-Forte hearing aid that initially gave frequent feedback due to a poor-fitting ear mold. A second well-fitting ear mold was made, which improved the situation but didn't eliminate it. People often said to me, "Do you hear that noise?" Of course I didn't, but I was uncomfortable being the cause of other folk's discomfort. Susan Meserly, an audiologist at Group Health, sought out a solution for me. She suggested I put a small amount of Corn Huskers Lotion in the outer ear before inserting the ear mold. The lotion is of just the right viscosity to create a seal between the mold and the ear. Also, just incidentally, the mold slips in more easily.

To my relief and pleasure, it works, thereby preventing me from returning the aid in a fit of irritation. I found the lotion at Bartells, and it seems to be widely available."

President Clinton and Hearing Aids

by Steve Hoffman, Seattle

"The AP report on Clinton's hearing aids says:"Mid-life is catching up with Bill Clinton" - indicating that wearing aids tells people you're getting old.

The in-canal aids are "hardly noticeable to other people" - indicating that you definitely want to hide the fact that you're wearing aids.He will "pop in the aids only when he needs them" - indicating that full-time wearing of aids is not necessary to optimize their usefulness.I guess that about covers the list of wrongheaded messages that could have been broadcast under the circumstances. Sigh....Perhaps a write-in campaign could be organized to counteract these impressions?"

Assistive Devices that Hiss

by Betty Ruble, Auburn

"I am an avid theatre-goer and love attending concerts. I don't have much trouble at concerts, as the music is usually loud enough for me. In fact, almost always, I turn the aids down. There are no "bad hearing" seats at a concert.But, at the large theatres I've hit a real snag. At first, they were great! Then...the last couple of times, I've gotten ALDs that have hissed - like steam escaping. None of the program comes through at all. A patron cannot test them before being seated, and, you cannot get up after the play has begun to go exchange it. (The "exchange" can be just as bad.)So, I have suffered the loss of a couple of great plays (at $50+ per ticket). I've had to take my hearing aids out to try the ALD's. Then! All the whistling and hissing really begins. A stranger sitting next to me gets very upset. I, also, do not relish handling my hearing aids in a darkened theatre, either.

Of course, when I turned the devices in, my complaint fell on "deaf" ears, I'm sure. I even wrote to [name withheld]. When I attended the performance of "CATS" - same thing! At intermission, I went to the lobby and explained what was happening. I was handed another one. Of no avail, more hissing.I now have a ticket to see "SHOWBOAT" in October and am rather dreading it.

But...I already know the story line and "SHOWBOAT" is mostly music and dancing.I haven't even tried a movie theatre yet. I piece together what I do hear and make out.There must be some way that they can test the ALDs before they are dispensed to theatre patrons. Can you help me? and many others, I'm sure."

[Editor note: Do any of our other readers have the same problem. If so, how did you resolve the situation?]

Meniere's Disease and Hearing Loss

[Editor's note - name withheld]

"I have been trying to find a solution to my hearing problem for 3 years. I have Meniere's disease, which in addition to dizziness, causes severe hearing distortion. I have investigated practically every aid on the market with no success. I have attended Meniere's group meetings and presentations at the U of W. The presentations and topics are interesting but don't help me with the problem of the frustration caused by not being able to hear and participate in what goes on around me.

"I am limited to one-on-one conversations in a fairly quiet environment. Music and background sounds are very painful noises, since I apparently hear louder than normal hearing people and drown out all voice detail. I of course, use captioning, for I can't understand voice from speakers. I also find that the LF receivers supported by some PA systems are fairly effective."What I would like would be sessions where people with hearing problems discuss ways of dealing with the frustrations of hearing loss. I am gradually turning into a recluse."

Pregnancy and Hearing Loss Comments

by Paula Titus, Seattle

"I wanted to make a comment to Kirsten Robbins who wrote the article "Pregnancy and Hearing Loss" in the Fall issue of Washington State News for Hard of Hearing People.

It was interesting to read about her problem of losing hearing when she was pregnant. I also lost hearing with each of my first two babies. I had toxemia with my first baby but not with my second one. I never knew fluid retention could cause hearing problems. I had always thought my hearing loss was due to having c-section surgeries. I have five children in which I had to have c-sections with each one. When I was pregnant with my third child my mother had me take "Zinc" during the entire time I was pregnant and I did not have more hearing loss with my last three babies. I don't know if there is any medical advice that would agree with this, but I know I am so thankful I didn't lose more hearing with each child.

Kirsten, I appreciate reading the article you wrote. I always thought I was the only one with this problem. I cannot offer any advice on using a baby monitor because I never used one. I always kept the baby in the same room I was in or very close by. I have seen children that get hurt and just sit or stand waiting for mom or dad to come running. I knew this was a problem, so I taught my children to come to me when they got hurt, not me come to them. My oldest child is now 22 and my youngest is 10. I made adaptations for my hearing loss as a mother with my children. Thank goodness improvements have been made so you will not need to have your children do some of the things I needed my children to do. An example, I became dependent upon my oldest child to answer the phone for me when it rang. At three years of age he was very good at relaying messages to me and helping me with the phone. My other children never became that good at such a young age.

I lost my hearing when I was 4 1/2 years old. My parents never told me I couldn't do anything, so I set about learning to make adjustments that I needed to accomplish what I wanted. It really surprised me when I moved to Seattle to hear people say, "I didn't know you could drive a car!" My answer was "Why not!" Several times people did not want me to watch their child for an hour or so because they didn't think I could do it because of my hearing loss. (I have a profound hearing loss and do not use sign language. I got a cochlear implant when my youngest was 2 years old.) That surprised and hurt me because, here I am with a house full of happy, healthy children of my own and yet other do not think I should watch theirs.

My best wishes go to Kirsten and her little one. Find what works for you (baby monitor) and be the best mother you can be!"[Editor's note: I saw Kirsten and John this week. They are the proud parents of a healthy baby boy]

SHHH And Families

by Penny Allen, Port Orchard

Congratulations! Your spouse has finally discovered SHHH. You've been worried about the brooding, the anger, the edginess. The fun and spontaneity have been slipping from your marriage. You can't remember the last time there was laughter in your house - or friends.

SHHH will give your spouse new interest, something to look forward to each month. There'll be new friends and there'll be people at the meetings who understand the frustrations and loneliness of hearing loss. There will be lots of educational information, so your spouse will be up-to-date on the latest technology and research. Hope, self esteem and assertiveness will slowly replace despair, insecurity and shyness.Sounds great and you're very supportive, aren't you? So why don't you consider attending the meetings too? After all, don't you both live with a hearing loss?

KIRO TV Now Uses Live Real-Time Captioning

The SHHH Umbrella is delighted to learn that Channel 7 plans to begin live captioning of its local evening news on November 3rd. [Editor's note: This newsletter will be in the print shop on that date.] KIRO will be joining KSTW (Channel 11) as the only other station in the Puget Sound area offering live captioning of its local news.

Please advise both stations how much we appreciate their effort to reach the thousands of us with hearing loss. Many people have captioning on their TV and are unaware they have it or how to use it. If you have purchased a new TV with a screen 13 inches or larger since 1993, it is very likely your set has captioning built in. Please check your owners manual on how to activate the captioning. If you have difficulty understanding speech on TV, captioning can once again make watching TV an enjoyable experience.

Gordon L Nystedt

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