Tag: hearing aid

Overkill?

Published on by hearingelmo5 Comments
At the beach in Ocean City with cochlear implant, hearing aid, and hearing assistance dog
At the beach in Ocean City with cochlear implant, hearing aid, and hearing assistance dog

1. I’ve had people with cochlear implants before ask me why I don’t just use a cochlear implant. One (or two) works for them after all!

2. I’ve had people with hearing aids ask me why I choose to get a cochlear implant in my “worse” ear.

3. I’ve had folks with CI’s and HA’s ask me why I use assistive devices in the classroom if I am “hearing again” so well.

4. I’ve had people with cochlear implants ask me why I need a hearing assistance dog if I’m hearing so well now.

5. I’ve had people who were culturally Deaf ask me why I don’t just use ASL since I am proficient in the language.

6. I’ve had people who were late-deafened ask me why I do not just continue to speech read. Why embrace technology?

Overkill?

These are all legitimate questions. I will do my best to answer them.

1. I’ve had people with cochlear implants before ask me why I don’t just use a cochlear implant. One (or two) works for them after all!  Not everyone who qualifies for a cochlear implant can go bilateral. I have Meniere’s disease and I barely squeaked by in pre-surgical balance testing to be a unilateral candidate. I use a hearing aid in the opposite ear because – well, because my audiologist told me too! My audiograms and testing each year astonish my audiologist at Johns Hopkins. Who would have thought I could hear this well? However, the proof is clear. I gain an extra 3-7% when I use a hearing aid in my unimplanted ear.

2. I’ve had people with hearing aids ask me why I choose to get a cochlear implant in my “worse” ear. I chose to get a cochlear implant because with the best BTE hearing aids available, I could no longer hear well enough to carry on a normal conversation. I learned all I could about cochlear implants and took the “plunge” in April of 2005. I’ve never regretted it. A comparison of my audiograms can be found at this post: CLICK HERE.

3. I’ve had folks with CI’s and HA’s ask me why I use assistive devices in the classroom if I am “hearing again” so well.  I hear great in “most” indoor environments. I even hear outside fairly well if there is not a lot of competing noise. But let’s face it. Listening environments are not the same. Some rooms are huge with cathedral ceilings. Some have all hard surfaces. I use assistive devices because it helps to eliminate one of my greatest enemies. NOISE. Isn’t it funny that as a “hearing again” person, noise interferes with my hearing well? My favorite device as a teacher is my clipboard. You can read about it at this post: CLICK HERE.

4. I’ve had people with cochlear implants ask me why I need a hearing assistance dog if I’m hearing so well now.  This is probably the number one question I receive in person, from readers on Hearing Elmo, through FaceBook, and through email. My hearing assistance dog from Fidos For Freedom gives me something that my cochlear implant and hearing aid do not. Independence. When I trained to be matched with a service dog, I was not only learning the commands, but also learning to watch my dog – and to trust my dog. I needed that training! I am confident in knowing that if I do not hear something, my hearing assistance dog will let me know. This may mean becoming aware that a car is coming up behind me in the parking lot. It may mean that I will know before rounding the end cap, that there is a noisy family on the next aisle. I know if I drop things. I know if intercoms are giving announcements. I know about alarms going off. I know when people are saying “excuse me” so that they can get past, and much, much more. I feel safe. I feel confident. I am independent. I didn’t feel those same things when only utilizing a CI and HA. (Besides with my balance issues, Chloe has become just as necessary to me because of her balance work).

5. I’ve had people who were culturally Deaf ask me why I don’t just use ASL since I am proficient in the language. Bottom line? I am not culturally Deaf. I was not born with hearing loss. Everyone close to me has normal hearing. Don’t misunderstand. I love ASL and have been teaching the language for over twelve years. I actually rely on sign at home if I’ve taken my ears out (as well as speech reading). However, I was born into this world with ears that hear. It made sense (to me) that when I began losing my hearing that I fight to regain as much of that as I was able to do. I do not criticize those who embrace their deafness. I love the culturally Deaf and have learned how to advocate in a positive way from Deaf friends. But… I’m not Deaf. I am a person with hearing loss who is “hearing again”.

6. I’ve had people who were late-deafened ask me why I do not just continue to speech read. Why embrace technology? Speech reading (or lip reading) is not an exact science. Don’t believe me? Try it sometime. Get a friend or family member to voice some simple sentences with their volume “OFF”. Can you accurately pick up what they are saying?

According to the CDC (2012), a good speech reader will be accurate 4 to 5 words in a sentence of 12 or more words. I have news for you. 33-50% by the BEST, means they are not communicating well. Even for those who are terrific at understanding “in context”, will still be asking for repeats or clarification (or sit there “lost”). I still speech read some. It is only an additional tool to help me communicate at my best, however.

Use It All!

So. Is the way I’ve chosen to stay connected, to communicate, and to hear the world around me overkill? Perhaps to some it is. However, these choices have helped me to cope, to interact, and to be a confident “hearing again” adult responsible for my own communication. If you are a person with hearing loss, you have chosen your own path, too. I respect that! I am grateful to be living in an age where so many options are available to people with hearing loss. Decide how you want to engage the world around you – and then OWN IT.

Do you use additional things to hear at your very best? Please feel free to share those options by commenting on this post.

Happy hearing!

Denise Portis

© 2013 Personal Hearing Loss Journal

Center for Disease Control. (2012). Hearing loss in children: Learning language. Retrieved April 20, 2012, from http://www.cdc.gov/ncbddd/hearingloss/language.html

Sunshine

Published on by hearingelmo3 Comments

sunshine

I was so glad to see the sunshine today. I read the weather forecast last night and tried to tamp down the anticipation and excitement in my heart. We’ve had such rainy, humid weather. I’m just a “mess” for lack of a better word when we have periods of days like that. Meniere’s disease is a burden I do not gladly bear. I’ve yet to be able to “find thanks” for it, though I have learned to do so is the best way to come to a place of full acceptance.

So when I saw the forecast I was optimistic but influenced by the realist within me… you know, the one who has seen the poor forecast predictions for the last week? We don’t get “full sun” today, but I am embracing the “partly cloudy” let me tell you!

Humidity is not really the “friend” of a person with hearing loss without Meniere’s disease as well. Veterans will tell you that faithful use of a desiccant brick (I use “Dry ‘n Store” myself) will prolong and improve the use of hearing technology such as hearing aids, cochlear implants and more!

We’ve no control over the weather. We can try to keep these devices dry, but “weather happens”. I do try to be careful and have an umbrella in every car, near the door, and in my rolling cart that comes into every classroom with me. I faithfully attend to the weather forecast so as to be better prepared for the day ahead.

Sometimes humidity and moisture problems occur in addition to weather-related incidents. Here are some I’ve dealt with myself:

1. Stepping into the shower, “hearing”. You’d think since I cannot hear the shower run anymore as I walk into the bathroom “deaf”, if I can actually hear the water running it would clue me in to the fact that I forgot to remove my “ears”. A couple of times a year I will still step into the shower not quite as “naked” as I should be. Thankfully, realization hits quickly. I shriek, streak to the bedroom, dry them off, tuck them into the Dry ‘n Store, and pray they dry quickly. Bedtime RITUAL is what has helped me avoid any of these wet OOPS lately. Having a routine before doing things like showering may help!

There is a cochlear implant by Advanced Bionics that can be completely submersed in water. My Nucleus Freedom by Cochlear is water resistant. For me this means I can have some of those OOPS episodes and not have to worry about damaging my CI!

2. Sometimes I sweat. Yeah, I know. Not very feminine or attractive. I crack up reading labels in the deodorant aisles at stores. Men’s products claim to control sweat. Women’s products boast of smelling pretty, not leaving white marks, and control perspiration. <snort>

I’ve found a great product though, and highly recommend EAR GEAR. They claim to be hearing instrument ARMOR. I love their products. They have products for BAHA, hearing aids, and cochlear implants. Ear Gear protects our devices from moisture and dirt. They also happen to be very comfortable. I have very small ears and the products actually help my devices “slip” less as well. Click HERE to check them out. They have some cool colors too, which is always a perk in my opinion as I sport my “bling” proudly!

I’m not an athlete, but I know some late-deafened folks who are. There are various companies that sell products that help devices not only stay dry but also help them STAY PUT. Megan at Hearing Sparks discusses seven great products that are of special interest to those who need hearing technology protection that are ACTIVE. You can access this post HERE.

I’m going to cut this post short. I’ve some sunshine to go embrace…

Denise Portis

©2012 Personal Hearing Loss Journal

I Confess I Can’t Hear You…and That’s Okay

Published on by hearingelmo2 Comments

I met Shanna a couple of years ago through FaceBook. We share a passion for positive advocacy and a love for people with hearing loss. Shanna has taught me a thing or two about good advocacy towards movie theater captioning! I’m always thrilled to have her guest write for Hearing Elmo!

By Shanna Groves / LipreadingMom.com

Time to ’fess up. My ears aren’t as sensitive as they used to be.

I confess that I pretend to hear everything my kids say even when they’re calling each other “stupid” and I don’t know it.

I confess I laugh before a joke’s punch line, not because of a warped sense of humor, but because I didn’t catch the joke’s first sentence.

I confess that I am unable to hear my telephone ring without my hearing aids in.

I confess that I don’t understand most dialogue on TV without the closed captioned turned on.

I confess that I get irked when the closed captioning isn’t working is turned off.

I confess that most people I haven’t seen in years are shocked when I tell them I have to read lips to “hear” them.

I confess that my older two kids usually act as my ears in the following situations: when a person asks me a question and I don’t respond; when someone knocks softly at my door and I don’t answer it; when the phone rings and I’m not wearing my hearing aids; when my youngest child wakes from his nap upstairs and is crying at the top of his lungs; when anything in the house beeps.

I confess that I have learned to accept my limitations. I will never be successful in making a phone call without some sort of special accommodations (i.e., using a loud-volume phone or speaker phone; asking the person on the other line to repeat themselves 2-5 times).

I confess that being a hard of hearing mom is not my choice. In fact, it can make me downright cranky.

I confess that being a hard of hearing mom makes me smile sometimes, especially when my kids are squealing, whining, moaning, or acting like brats.

I confess that being a hard of hearing mom has changed me. I’m not as quick to judge others who are different than me.

I confess I’m not as impatient as I used to be. I don’t get as frustrated with having to repeat things to a store cashier, to wait in a long line, or drive in rush-hour traffic.

I confess that being a hard of hearing mom has changed me. And I like how I’ve changed.

Show Me Your Ears

Now that you know my confessions, can I ask you a favor?

Join me in my new awareness campaign Show Me Your Ears: To Promote Deaf and Hearing Loss Community Awareness.

The idea is simple:

1) Take a picture of your ears, hearing aids, and/or cochlear implants. Even if you don’t wear anything in your ears, take a picture.

2) Email your photo to Lipreading Mom at sgrovesuss (at) msn (dot) com. Include the subject line: Show Me Your Ears. Include your first name, name of your hearing aids or cochlear implant product (if applicable), and how long you have worn them.

3) Watch my blog, LipreadingMom.com, in the coming weeks. Your photo may be featured!

I have blogged extensively about my progressive hearing loss on this site and my initial reluctance to wear hearing aids or show them off to anyone. I was afraid of what people would think about them. Would they think I was unable to communicate with them? Would they ignore me?

Finally, I made a decision: I am going to embrace my hearing loss. I’m going to show my hearing aids to the world. And so I do!

Will you help me to embrace that—hearing loss or not—all ears are unique, beautiful, special?

Hard of hearing or not, I confess that showing my ears to the world has been liberating. Will you join me in this campaign?

About the Author
Shanna Groves has been a hard of hearing mom since 2001. She is the author of the novel Lip Reader and writes extensively about hearing loss issues at http://LipreadingMom.com.  

Untreated Hearing Loss

Published on by hearingelmo1 Comment

An initiative by Phonak – http://www.hear-the-world.com/

I just loved the movie UP! Not just because it had main characters that were dogs – and ones that could talk at that! Carl, a 70’s something animated actor sported hearing aids and spunk. Mostly the latter…

I recently ran into a 70’s something gentleman at the gas pump. I was leaning against the car waiting for my tank to fill, trying desperately to avoid looking at the high numbers scrolling across the screen as my 12 gallon tank drained my bank account. It was a pretty fall day, so I had the car windows down and was talking to Chloe. She could really care less about the price of unleaded, but she does like to flirt with other people nearby. I caught sight of a low tire, and changed positions so as to look at it better. This gentleman caught my eye and said, “I noticed that too… you need air in that tire”.

With some apprehension I looked around the station and could not see an air pump. I responded, “Oh dear, I don’t see an air pump!”

The gentleman cupped his ear and said, “teardrops and dare what?”

I think my eyes popped wide. Another person with hearing loss! I just beamed at him and turned to face him while repeating, “I don’t see an air pump, do you?”

He dropped his cupped hand and turned in a circle looking around the islands of pumps at the station. “Nope! I don’t see one either. You may have to go to another station and get some air in that tire!”

I pointed to my head and said, “I have a hearing loss too…”

He looked at me quizzically and moved to see the side of my head. “Oh! I thought that was one of those new-fangled gadgets people use to talk into. Is that a hearing aid?”

I beamed again, always excited to share and said, “No. It’s a cochlear implant.” I pointed to my other ear,… “but I have a hearing aid in this ear even though it doesn’t do me much good”.

He shook his head sadly and said, “Yes, I tried them for awhile but all I got was squeals and whistles. I never could hear better.”

Pointing to my CI again I said, “You should go to your audiologist and get evaluated for a cochlear implant. I hear much better than I ever did with just a hearing aid.”

He moved closer to me, still occasionally cupping his ear. I couldn’t tell if he was understanding all I was saying, so I really concentrated on speaking at a moderate pace and clearly. At least as clear as a pronounced southern accent would let me.

He stood within a yard from me and looked longingly at my CI. “If I were young again, I’d get that surgery!”

I put my hand on his arm and said, “Oh! You shouldn’t let age stand in your way. I know plenty of folks who are older who get the CI. They do very well!”

“No… no. I’m too old. It’s too late for me”, he said sadly. His eyes glistened and his chin dropped. It was all I could do not to throw my arms around him and hug him tight. Demonstrations of physical affection and empathetic squeezes were not likely to be accepted by a total stranger. So I restrained my impulses and instead said clearly, “You should think about that some more. It’s the quality of life that matters.”

My tank was full, as was his and cars were in line. I gave him my card and told him to email me. I hope he does.

Untreated Hearing Loss

Untreated hearing loss may result in depression, anxiety, little to no social activity, and insecurity (cited by Zounds). Helen Keller, who was both blind and deaf, said that deafness cuts one off from people, whereas blindness cuts one off from things. Even those who have received treatment for hearing loss may experience some of these same results, but in different degrees.

I recently went to a small group Bible study and had trouble hearing when I first came in since everyone was talking at the same time. Someone addressed me and I didn’t hear them. They ended up reacting negatively to that and I sat in shock at having been misunderstood and unfairly judged – and “I’m a veteran!” I thought to myself. But I think as a result of taking concrete steps towards hearing better, those of us who have made an effort to communicate with assistive listening devices and technology have also developed coping skills towards dealing with bouts of depression, anxiety, and insecurities. We have very likely also made great strides in being more socially active. In my case, having a negative experience at least meant I could email my peers and belly-ache about it and get some great advice!

But what if your hearing loss is untreated? If your hearing loss began as an adult, do you remember those early days of not hearing well? I sure do. I can tell you they aren’t GOOD memories either. Slowly, but surely I dropped out of nearly everything. When Terry and I first got married we vowed to continue to date. So even after the kids were born, we’d swap baby-sitting favors and go out on dates. After I began losing my hearing (when our 2nd child was born), those dates dwindled away and eventually stopped. I’d have hubby “order in” so that I could eat something I didn’t have to fix but would not have to face the noise of a restaurant. Now that I have a CI, I’m enjoying dining out again.

If you are still a working adult when hearing loss occurs, it can greatly impact your ability to do your job. You can only “fake it” so long. Hearing loss can be treated discreetly and privately. I have met some people at work, church, or in public who I didn’t realize had a hearing loss until they noticed my own “bling” (or hearing assistance dog) and mentioned it to me. For many, disclosing hearing loss is a choice you can make, whether you are at work or another place you often hang out (ballgames, church, community events, etc).

If you know of someone who may have a hearing loss, you may discover they can be stubborn about agreeing to go get evaluated by an audiologist. Encourage them to do so! Many times audiologists will do a hearing test for free. Even if you do not yet need a hearing aid or other technology in order to maximize hearing, it is good to get a baseline audiogram to chart where your hearing is “going”. Not all types of hearing loss are progressive – but then again there are many that ARE. Having a real way to chart what is happening to your hearing is important.

We use to get our hearing checked regularly in school. Because of budget cuts few schools do hearing tests anymore. Parents should be diligent about periodic hearing tests for their children. Especially those who had tubes put in when young, or suffered from numerous ear infections. If hearing loss runs in the family, it is even more important to religiously set up audiograms for members of the family.

Don’t Chalk it Up to “Age”

I have heard many say that they expected some hearing loss when they reached their late 60’s or 70’s. Age-related hearing loss is not uncommon. However, many choose not to do anything about it. Hearing aids have “come a long way baby”. They come in all sizes, shapes, and COLORS. (Yeah, of course I would mention THAT!) They can be worn discreetly or worn all “be-dazzled”. You may find that you hear fine in “most” situations, but perhaps you have trouble understanding and hearing in noisy places. Hearing aids are also able to isolate voices close and zero in on direction of the listener. You’ll never know what is available until you go see an audiologist and talk to them about your options!

If you tried hearing aids and hated them, but know your hearing loss has worsened – please don’t discount cochlear implants without sitting down and talking to recipients. All three cochlear implant manufacturers have message boards and forums in which you can ask questions and discover answers from actual cochlear implant recipients. Age doesn’t matter either – the oldest person I personally knew who was implanted was 87-years-old. I have read stories of others who are even older. A person does need to be healthy enough to undergo outpatient surgery and anesthesia, but age doesn’t disqualify anyone!

The American Academy of Audiology reported the findings of a study done by the National Council on the Aging. Over 2,300 individuals participated in the study, and 2,090 hearing family members were also surveyed. The results of the study can be viewed here. The study noted that, “Hearing loss is one of the most prevalent chronic conditions in the United States, affecting more than nine million Americans over the age of 65 and 10 million Americans age 45 to 64. But about three out of five older Americans with hearing loss and six out of seven middle-aged Americans with hearing loss do not use hearing aids”.

If you or someone you know has a hearing loss, go get an audiogram and information about your hearing loss. What have you got to lose?

Denise Portis

© 2011 Personal Hearing Loss Journal

Community

Published on by hearingelmo4 Comments
I don't exactly blend into the background...

Recently Chloe and I were at our neighborhood grocery store. I rounded a corner and came face-to-face with a young boy approximately 6-years-old. His eyes grew wide as saucers and his mouth dropped open. Curious, I looked around quickly to make sure his astonishment was at my own appearance and not on someone in my vicinity. Since it was just Chloe and I… I surmised he was surprised at ME. He looked at Chloe carefully and read her vest. I could see his little mouth sounding out the words on her vest. I could “see the light bulb go on” for him about what Chloe does as her job. He took a step to the side and leaned so as to better see the side of my head. My smile let him know I was OK with that – I even turned my head so he could better see the cochlear implant. His answering smile seemed thrilled to understand as the result of his attentive perusal. I wasn’t prepared for what happened next. So unprepared was I, my own mouth dropped open in surprise!

A lady who looked like she’d lost a 7-year-old boy came around the corner in a near trot. She stopped dead in her tracks and looked with relief on the boy and waved at him to “get over here“. He shook his head “no” and signed, “Look (towards me)! Cochlear Implant receive me, able dog own can/able? yes?” His mother practically interrupted his sign and shook her head NO.

She signed back, “Dog want – cochlear implant want not. Appear normal important!” She took him by the hand and drug him away to the cereal isle. I stood there for a few minutes digesting what I had over – erm – HEARD. Obviously, she didn’t realize I am fluent in ASL. I stood there … in all my NOT NORMAL glory… not fitting in… while Chloe sat and stared at a box of Uncle Ben’s rice that happened to be nose-level.

I was speechless! For those of you who know me – well that is a RARE THING – THAT! I finished my shopping in a near-daze.

Not Normal

I wear “bling” on my cochlear implant and have a bright, red ear mold on the hearing aid in the opposite ear. I have an assistance dog who alerts me to direction, sounds I miss, and helps me with balance related tasks. You can look at me and guess pretty quickly there isn’t a lot NORMAL about me. But that isn’t because I have a hearing loss and balance problems. Plenty of people wear cochlear implants or hearing aids. Plenty of people have balance problems. I believe my not being “normal looking” lies in the fact that I make sure my invisible disabilities – AREN’T. There are numerous reasons for that… likely best left for another post. It is in my best interest to be visible. It keeps me from getting injured – although it doesn’t guarantee that.

Not everyone with hearing loss chooses to be as visible with bionics or assistive listening devices and technology. Not everyone with Meniere’s disease is partnered with an assistance dog. Yet this works FOR ME. I’m happy, confident and independent. Isn’t that what every adult wants, after all? Sure – like everyone I have things I am dependent upon. My faith – the love of my family – connections with others. However, what I choose to use in order to live my life independent of the help of others is my desire. I’ve taken steps that I felt were necessary to ensure that independence.

A “Brag” on the Hearing Loss Crowd

Can I just brag for a minute? Do you know that I believe people with hearing loss tend to be more accepting and understanding about differences than any other group? I am MOST at home in a crowd of people who all have hearing loss yet are extremely different.

Some have assistance dogs

some “sport” various CI’s represented by all three manufacturers of cochlear implants

some have vision loss as well

some have hearing aids

some wear neck loops and are using assistive devices

some use sign language

some carry notebooks and READ and WRITE messages…

Yet I am at home among this group. I was reminded of how at home I feel after enjoying the numerous pictures taken by friends who were able to attend the recent Hearing Loss Association of America convention in Milwaukee. Everyone “fits in” at these conventions. It’s much like a family reunion. I don’t agree with everything HLAA does, nor do I believe they always seek to fulfill their original mission. But one thing HLAA does very well is – COMMUNITY. Through forums, live chats, national conventions, state conferences, local support groups, and the Walk4Hearing, HLAA provides community to an every-growing population of people living with hearing loss. Being a part of this community encourages people to do more than live with hearing loss. This community encourages LIVING WELL with hearing loss. I think we all want an abundant life!

William Mather Lewis: The abundant life does not come to those who have had a lot of obstacles removed from their path by others. It develops from within and is rooted in strong mental and moral fiber.

Socrates: Living well and beautifully and justly are all one thing.

Latin proverb: While life lasts let us enjoy it.

Denise Portis

© 2010 Personal Hearing Loss Journal



Do Not Put it Off!

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This week marked the end of my son’s life as a high school student. In a couple of weeks, my parents will be here to celebrate at his graduation ceremonies for Chieftain Christian Academy. Although Chris did most of his senior year at a local community college (since he goes free thanks to “Dad” working there), he still did a couple of classes at home. I’ve been more “hands off” in his education this year, but still had the opportunity to make sure he was logging hours for that 1/2 credit of Bible he needed. I was still his “teacher” for Geometry, something we put off far too long! I was still busy grading papers, generating paperwork for our co-op, and preparing lesson plans for the kid.

Now the “kid” is done, and I find myself asking, “What do I… want to be when I grow up?” My life has pretty much been on hold for twenty years, in spite of working part-time as a teacher throughout. Every school year revolved around the kids, as did every activity, field trip, book purchase, and support group meeting. Now we are “done” with this chapter in our lives and I once feared I would be left feeling deflated.

But… I have a plan of action. That is part of the reason I have been going to school part-time. I’ve been taking 6-9 hours a semester of graduate level courses in Psychology. I’m set up to complete a Master’s program at the end of 2010.

Looking Back

In spite of all of these years of concentrating on my family, I really didn’t think there would ever be a day I could look to my own dreams. It’s hard to believe that it has been almost twenty years since I first began to notice a dramatic change in my hearing. In the beginning it was so hard! Even my own parents and siblings had difficulty believing I was really losing my hearing. After all, when I was being raised at home, I only had a mild hearing loss in one ear. It didn’t make sense to them that ten years could make that much difference in my hearing. I remember one of my kids coming home from Colorado after visiting family, visibly upset because someone had told them that my hearing loss must be “put on”… that it wasn’t real. They had no idea how to respond to the lack of belief in acquired disabilities. They knew I couldn’t “hear” in the dark (since I speech read). They knew how frustrated I was when my hearing aid battery would die. They knew how terrified I was of the phone and how I was slowly dropping out of activities at church since I couldn’t hear. I remember talking to my little sister on the telephone prior to my cochlear implant surgery.

She wanted to know why I would consider surgery and take that risk. I remember staring at the phone incredulous at her question. Here I was reading captions from a Cap-tel phone, in order to even know what she said… and THAT wasn’t 100%. I explained how minimal the risks were to cochlear implant surgery and tried to explain how desperately I WANTED MY LIFE BACK.

Looking Ahead

I didn’t let their reservations stand in my way. Thankfully, my immediate family understood the struggles I faced each and every day and were so supportive! Other late-deafened adults were encouraging and enthusiastic about my surgery. Getting a cochlear implant allowed me to dream again. Because I can hear as well as I do, I look forward to giving back in some way… of doing something outside the home. Don’t get me wrong… I have loved being a keeper of the home and the opportunity to spend so much time with my kids. However, I really thought that at the end of this time I’d be facing an empty nest and feeling unnecessary. Once I could “hear again”, everything changed. I’m at the end of this journey and at the beginning of a new one! I’m feeling rather hopeful, excited and NECESSARY.

I suppose if the posting this week had a POINT, it would be this:

Do you have a hearing loss? Do hearing aids and other assistive devices no longer help you very much? Have you been evaluated and been told that you qualify for a cochlear implant?

DO NOT PUT IT OFF.

The risks are minimal, the pay-off is HUGE. It has been five years since I was activated (May 13, 2005). I have no regrets other than I waited as long as I did. I qualified for a cochlear implant three years before I finally went through with the surgery! I’m dreaming again. I’m excited about the future. I have plans, goals, and am slowly but surely “getting there”. I can hear with this bionic ear of mine!

Denise Portis

© 2010 Personal Hearing Loss Journal


Misconceptions

Published on by hearingelmo3 Comments

I’m always so tickled when one of Hearing Elmo’s guest writers offer to post something! This one was really “timely” for me and I needed the reminders about what some common misconceptions are! Thank you to Tywanna, one of Hearing Elmo’s guest writers!

MISCONCEPTIONS

Guest writer: Tywanna

The American Heritage Dictionary defines misconception as “A mistaken thought, idea, or notion; a misunderstanding.”

Prior to the decline of my hearing, I could not explain what it was like to live with a hearing loss. I was incapable of completely explaining something I’ve never experienced. If I had tried to do so, my words would have been awkward, confusing, incorrect, or ignorant.

I’ve cross across some people with “normal” hearing who feel as though they understand but their reality is often a misconception.

Here’s a list of the top misconceptions I’ve heard and experienced throughout my hearing loss journey.

1. All people with hearing loss use American Sign Language

According to Wikipedia, while there has been no reliable survey of the number of people who use ASL as their primary language, estimates range from 500,000 to 2 million in the United States. As of 2009, the United States population was estimated at $307 million people. If these statistics are close to the actual numbers, ASL users are in the minority.

In 2006, Gallaudet University published a study which indicated the estimates need updating.

2. Yelling will make the person with hearing loss hear better

Imagine speaking with someone and hearing but not fully understanding what’s being said. To a person with hearing loss this is a regular encounter. Sometimes we often nod, smile or shake our head out of politeness or because we don’t want to interrupt the speaker with “what” or “can you please repeat that.”

Sometimes when people with a hearing loss find the right moment to intervene with a polite “can you repeat that”, we’re faced with someone yelling so loud that their words become distorted.

I often feel compelled to ask, “will yelling make me hear or understand you?”

3. People with “normal” hearing may not talk with someone who has a hearing loss

A manager at work explained to me that she knows I’m smart but she was afraid people would not talk to me because I could not hear them. Is this the way my co-workers feel or the way she feels? I’m inclined to believe it’s the later due to her ignorance about hearing loss and her lack of being comfortable around someone who is slightly different than herself.

What does being smart have to do with hearing loss? How are the two related?

4. The word “impaired” sounds nicer than hearing loss or deaf

While taking an ASL class for the first time I used the word impaired with our instructor who was born deaf. She politely explained to me impaired means broken. After that experience I looked up the word in the dictionary. Impaired is a synonym for broken, ruined or messed up. Wow, did God make me broken? – of course not. He made me exactly the way he intended. He made me to be unique, different and one of a kind. Since finding out the true definition of the word impaired, I have eliminated the word from my vocabulary when referring to others with hearing loss or myself.

The terms dumb, mute, and handicapped and several others are no longer acceptable. Let’s band together to eliminate the words that may be offensive or degrading to certain members of the population.

Let’s ask people what they would prefer to be called and honor their wishes.

5. All people with hearing loss want to be “fixed”

Have you ever come across people who feel as though they have the answer to everything? Every time a new product or infomercial comes on television, they feel compelled to let you know.  “Oh my, I’ve seen this wonderful new head phone set that will enable you to watch television without using closed captions.” Well, I’m wearing a BTE hearing aid that costs $3000 and you’re telling me a product for $19.99 will enable me to understand the television?

“You’ll never guess what, “I’ve seen a new hearing aid that is suppose to fix all types of hearing loss.” Who told these people there is a cure for deafness?

Who also said deaf people want to be fixed? As a whole, the hearing loss and Deaf community are proud of who they are.

6. Deaf means “No Sound”

Wrong! The term deaf does not mean without sound. According to the Center for Disease Control, deaf is the inability to rely on your hearing to understand and process information without the use of visual cues.

7. Deaf people want sympathy

Recently while interacting with my supervisor at work, I explained to her I would prefer written instructions because I was going deaf. Her reply was “I’m sorry”. I quickly explained there is nothing to be sorry about. People who are Deaf, deaf or hard of hearing want empathy not sympathy. I don’t want people to pity me or feel sorry for me. That’s not the way I see myself. I’m using my hearing loss as a way to help others.

My cousin recently sent me an e-mail with the following quote:

“Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity.”

–Rev. Dr. Martin Luther King, Jr.

People with “normal” hearing, may never be able to fully understand our journey. Often times true understanding comes from experience. We do not have to live in continued ignorance. There are so many libraries, books, television programs and Internet websites. Let’s educate people one at a time. Let’s band together to wipe out the misconceptions. Let’s continue to share our experiences to help others.

Try Something New

Published on by hearingelmo2 Comments
An Elmo Application for the iPod

My husband called me into his office last night and checked out the “side of my head” to see if I still had my cochlear implant and hearing aid on to hear. I kind of grin to myself when he does this, for after all… I’d not hear him call me into his office if I didn’t have my cochlear implant on my head!

He said, “Can you put headphones on over your implant and hear?”

I looked to see what headphones he was talking about and noted that it was his nice “noise canceling” headphones and not the ear buds. “I’m sure I can,” I responded, “but I’ve not tried!”

Now I’m likely one of the few Americans that does not own an iPod. I also do not have an MP3 player (although I think those aren’t as popular now!). It may have something to do with the fact that I have a hearing loss. Prior to the cochlear implant, I had become accustomed to living without music. (Kinda of sad if you think about it…) My CI has some fancy attachments that I can use so that I can actually use an iPod if I want. However, usually I sit at my computer and listen to iTunes. I make a special time to do that, and enjoy the music better if I’m not busy doing something else that requires my concentration.

My husband has an iPod touch. He is a very techie/gadget kind of guy. I’ve heard him dreaming out loud in his sleep about the new iPad. (I’m fibbing of course… I’m deaf at night!). He held out the headphones to me and motioned for me to put them on my head.

I adjusted them to where I could comfortably place them over the processor (the headphones were HUGE and covered my entire ear!). He handed me his iPod touch. I stared at him blankly. “Ummm. I haven’t a clue as to what to do you know!” I grimaced. (Hubby and I are blissfully married because ‘opposites attract’ as I do not have any techie/gadget cells in my body).

He motioned with his finger, and showed me how to “touch” the screen. My breath caught in my throat as Elmo trotted onto the screen. As only Elmo can, he described how I could make my own monster friend. I listened to the instructions, and made my very own monster with Elmo’s help (see above). Elmo showed me how to make my monster friend dance, exercise, and more. My eyes were wide and my grin infectious… I thought.

One look at hubby and I could tell he was afraid he’d never see his iPod touch again. “No worries, honey!” I explained. “I don’t want your iPod!”

Trying not to look obviously relieved, he motioned for me to remove the headphones. “I can buy you one, you know!”

“Naw! This is a cute application, but I’ll stick to what I know best. Thanks for sharing that!” I replied.

At Least Try

Now I might fall in love with the iPod, if I sat and used it for a longer period of time. I tried it and it worked well for me. However, I really like my iTunes! In spite of how cute that Elmo application was, I wasn’t ready to invest my money on something I may not use much. I am happy with what I have. What if I told my family members (desperately looking for birthday gift ideas) that I did not want an iPod even though I had never tried one? My tone and words might convince them I was serious, but how believable am I if I’ve never tried it?

I remember when my kids were little how difficult it was to get them to try new foods. They weren’t allowed to wrinkle their noses and say “no thank you” to something they’d never tried before! I encouraged them to always “at least try” new foods.

Sometimes we don’t try new things because we are afraid we’ll fail. I could have taken one look at the iPod laying in one of my husband’s hands, and the headphones in the other and said, “Ermm… no thank you dear!” How would I have ever known if I could use the headphones that way? I would have missed seeing Elmo dance across a screen. I would have missed the opportunity to prove to myself that the tiny, slim, techno-intimidating iPod wouldn’t blow up if I touched the screen wrong. I had to at least try!

Trying Something New

Why don’t people like trying new things? Hopefully, I have modeled good behavior for my kids that they should be willing to try new things before deciding on a different route. Obviously I’m not talking about drugs, alcohol, sex or other self-destructive behaviors! I sat down and tried to come up with a list of why people do not like trying something new:

1. Fear of failure. What if I blow it? What if I am not able to complete an 8 km race? What if I don’t reach my weight goal?

2. Old habits. I’ve always done it this way. Why should I try something new? The way I do things now work well for me. There is no reason to start something new.

3. It might cost me. I don’t have the time or money to start something new. What if I have to give up something else in order to do this “new thing”. I enjoy reading books, and that 1/2 hour walk will eat into my “me time”!

What are other reasons we may not try something new? I’ll never forget the first time my assistance dog was asked to do something new that she did not want to do AT ALL. You can read about it here. It took a lot of encouragement from people she trusted for Chloe to descend that staircase at Harper’s Ferry. The staircase seemed to lead “no where”. Does having a group of cheerleaders help you when you are trying to muster the courage to do something new? Maybe you don’t do well with a whole PEP SQUAD behind you, cheering you on! But the quiet encouragement from a trusted friend or two has shown to help you step out in faith – to try something new?

Trying new things is good for us. It gave my assistance dog new-found confidence and strengthened our bond. When I try new things I feel as if I’m exercising my mind and body. I’m growing.

Why should we be willing to try new things?

1. We may find a better way to do something! The “new way” may save time and money!

2. We may discover a new skill or exercise a talent in a new way.

3. We may meet some really incredible people!

4. We may find ways to minister/serve others in our “new hobby”.

5. You may come to the conclusion that the “old way” works just fine! (I really am perfectly happy with iTunes on my computer!)

Being willing to try new things also helps us to learn to put a little faith in others, which for some can be a difficult thing to do! Trying new things may also force us to have faith in what God has for us too! Some folks have an easier time trusting others than they do God. This should not ever be the case. (But I’ll leave that topic for another post!)

What have you tried “new” lately?

Denise Portis

© 2010 Personal Hearing Loss Journal

Breakthrough Hearing Technology

Published on by hearingelmo3 Comments

written by guest writer Dr. Terry D. Portis

Crossposted from New Hearing

Part 1, Dec. 18, 2009

The hearing health field is being rapidly transformed by advancing medical technologies.

Earlier this year I was appointed by the FDA as the consumer representative to the ENT Medical Devices Panel. They wanted someone who could read and interpret scientific data, while also maintaining a consumer perspective. Given my personal background as a family member of a person with a cochlear implant, and my professional background with the Hearing Loss Association, they thought I would be a good fit. The FDA lists my speciality as “educational psychology.”

Today the ENT Panel reviewed the Envoy Esteem device. The Esteem is a breakthrough device and gives us a glimpse into the future of hearing technology. It is a totally implanted middle ear device. There are no external parts. I will talk a little more about the technology aspects in the second post.

I had the privilege of spending a few minutes at breakfast this morning with Dr. Leopold, an ENT from Omaha. Dr. Leopold is also chairman of this panel. He worked at Johns Hopkins, and was familiar with the excellent reputation of Anne Arundel Community College. He was surprised that the college has grown to have more than 55,000 students.

The 16 experts on the panel represented various fields, and they either had an  M.D. Or Ph.D. Panel members were surgeons, physicians, audiologists, professors and researchers from all over the country. I quickly came to the conclusion that this group represented some of the best minds in the hearing health field. The FDA certainly outdid themselves in coming up with a high level group of conscientious and caring professionals.

At the end of the day, the ENT Panel voted to recommend approval for the device. The recommendation was unanimous. Here is the link to a breaking press announcement.http://www.medcitynews.com/index.php/2009/12/fda-panel-approves-envoy-impantable-ear-device/

Part 2, Dec. 19, 2009

This post represents my own understanding of the Envoy Esteem device.

The Envoy Esteem is the first totally implantable hearing device, geared towards people with moderate to severe hearing loss. Researchers first began working on the concept 23 years ago. There is no microphone, the device uses the eardrum and the sensor for a more natural hearing experience.

Here is a website with more information: http://www.envoy.us.com/Envoy_device.htm

The surgery is similar to cochlear implant surgery. The device is completely    invisible, and recipients can swim, shower, hike, etc. Some of the components, such as the battery, use pacemaker technology.

If you use the device 24/7, your battery will last about 4.5 years. If you limit use to 8 hours per day, you could see 9 years of battery life. My guess is that most people will keep it running. You also have a wireless remote, to adjust the settings if you like.

Positives: It is invisible, there is no maintenance or cleaning, long battery life.

Negatives: A delicate procedure with similar risks to other middle ear procedures. Specially trained and skilled surgeons are required.

Part 3, Dec. 21, 2009

Part III: Why I think this is important:

1. As a surgically implanted prothetic device it is more likely to be covered by insurance than hearing aids. No matter what healthcare reform bill ultimately passes, will state of the art digital hearing aids ever be widely covered in the United States?
2. The device removes operator error and frustration, and lack of usage. It is implanted, it is activated, you are tested, you are done. Nothing to clean, keep up with, etc.
3. We have another option along the continuum of hearing care. How many people have been frustrated with their hearing aids, feeling they are receiving little benefit, yet do not qualify for a cochlear implant? Envoy Esteem type devices give us something in between. It is also an option for people who say “hearing aids are not working for me.”
4. This is the future. Medical materials and micro-technology are advancing rapidly. Soon, devices such as the Envoy Esteem will be the size of a quarter with batteries lasting 10 years. There will be scores of people walking around with moderate to severe hearing loss, but you will never know who they are. There will be no hearing aid visible, no feedback, no problems in meetings or on the telephone.

Two generations ago, Self Help for Hard of Hearing founder Rocky Stone called hearing loss “an invisible disability.” We are fast approaching the day when it is just “invisible.”

Part 4, Dec. 21, 2009

Part IV: Personal testimonies

In the afternoon of the FDA panel deliberations, several recipients of the Envoy Esteem device gave personal accounts. This was a personal highlight for me. All of them led very active lifestyles, and had not been too fond of their hearing aids.

There were three mothers of small children (in their 20’s and 30’s), a dentist in her 40’s, two gentlemen in their 60’s, and a woman in her 50’s. Nothing about them would have clued you in to their hearing loss. If you were to try to pick them out of the crowded gallery you would have been unable to do so.

The dentist described her frustration of trying to hear over a drill. One young mom talked about now being able to hear her child who frequently gets sick in the middle of the night. One woman talked about being able to use the  telephone at work by just picking it up and answering it like everyone else. One mom talked about realizing her toddler always sings to herself in the backseat.

One of the older gentlemen talked about how he still says “what” after everything his wife says to him. He has developed a habit of doing it for years, but doesn’t need to because he can hear her. This gentleman took early retirement as a corporate CEO because of his hearing issues.

One gentleman, an otologist, talked about how he can go canoeing again and hear what he going on. He said, he wasn’t that great at canoeing, and ended up in the water frequently. This is no longer a problem.

The word that stuck me about each person coming to the microphone was  “self-confidence.” There were lots of people in the gallery, and the people were speaking to a panel full of M.D. and Ph.D. types. Not a problem.

Who is Responsible?

Published on by hearingelmo5 Comments

I was reminded this week about responsibility regarding my hearing loss.  A friend of mine was caught in an emotional moment, and got… well EMOTIONAL and couldn’t hear.  Instead of letting the other person know that she needed a moment to “get a grip”, she gave up.  I’ve done that so much myself, however, I wasn’t about to “cast stones”!  Even with my cochlear implant, if I get really emotional about something, I find it very difficult to understand what I’m hearing.

If I’m not hearing well, it is my responsibility to stop the conversation and “come clean” about not hearing well.  Sometimes I do that well… and umm… well, sometimes I pretty much make a mess of things.  If I act frustrated and angry because I’m not hearing well, the other person is bound to feel defensive.  I’m trying to learn that if I feel frustrated and angry, I should even say,

“You know?  I’m really frustrated right now.  I can’t hear you hardly at all and frankly it makes my head hurt to try and make sense of what you are saying.  It’s not you, it’s me.  Could you say that again and maybe speak just a little slower and lean closer?”

Sometimes people with disabilities tend to make their problem… everyone’s problem.  It can get so bad, in fact, that they end up thinking the whole world owes them the favor of setting up perfect communication settings. (for those with hearing loss).

At times, I have tried to be creative about making the best of a listening situation.  This past Sunday, my Redskins played.  After church, I generally remove my cochlear implant for a couple of hours as I have a bit of a tinnitus buzz and headache from concentrating on the sermon.  I’m many times exhausted from communicating in a restaurant , which is where my family always heads after church on Sunday morning.

My husband turns the closed captioning off for ballgames.  Those words scrolling at the bottom of the screen, tend to make it a HABIT to get in the way of that perfect interception, fumble or sack!  Normally I’m wearing my cochlear implant, so it isn’t to much of a problem.  I decided to “give in” about the CC as it was only during ballgames.

But this time… I had removed my cochlear implant.  So “free thinker” that I am, I didn’t think twice about sitting close to the television with the ear that has a tiny bit of residual hearing left in it, pressed close to the speaker.  I made sure I wasn’t in the way of anyone watching.

Now that I think about it, I have to laugh.  Hindsight is a wonderful thing!  The fact that I was sitting so close that my hair began to sizzle and spark with static electricity, means that I had to sit close enough I was practically cross-eyed.  I had the remote.  Hard to believe with hubby six feet away, yes?

Slowly but surely I began tapping the volume up.  I like to think it was unconscious, but I was pretty frustrated that I couldn’t hear the game.  So I’m reasonably certain some of that “tapping of the volume button” was conscious.

Something I’ve come to realize in the last year is that the residual hearing I have left in my right ear is practically non-existent.  It doesn’t take a genius to realize that if your cochlear implant batteries die, you scramble for fresh ones and discover the hearing aid in your “regular ear” picks up nothing… NADA… zilch… then you probably don’t have a lot of hearing left in that ear!  (And YES.  Don’t email me cuz I have had my hearing aid checked recently to make sure it works!)  Still, I was caught off guard when my daughter threw a pillow at me to get my attention.

She and my husband both had their hands over their ears, and I noticed the dogs were missing from the room.  It seems I had the volume a little high… and was still having trouble hearing.

I quickly turned it back down and was immediately bombarded with questions which included, “Why don’t I just ask for the captioning to be on?  Is that so difficult?”

The reality of it is, I simply wasn’t thinking at all.  After all, I have a cochlear implant.  It was sitting in my Dry ‘n Store upstairs just waiting for me to put it back on so that I could enjoy the ballgame like a “real” Skins fan.

But… it isn’t my family’s responsibility to remind me of that.  It is mine.  If I’m not hearing well, then I need to be pro-active in finding a way that I can.

It didn’t take me long to run retrieve my cochlear implant.  The dogs were glad to come back and enjoy the game.

Denise Portis

© 2008 Hearing Loss Journal