Tag Archives: hearing aids

You Don’t Know What You Don’t Know: Hearing Loss

A few of us experienced HoHs (hard of hearing people) got together to discuss hearing loss and our discoveries along the journey. Deep in the discussion, we began to talk about how much we didn’t know until we met other HoHs. The journey starts solitary and our hearing professionals were of no help early on in our lives. We learn by trial and error, through embarrassment and if we are lucky, from others with hearing loss.

Michele:

Flunking the public school hearing screening in the 1960s didn’t mean much to me, because I had no idea that what I heard was not what everyone else heard—quite typical for someone who loses their hearing gradually and progressively, no matter your age.

Here are a few more things that I didn’t know that I didn’t know from childhood:

  • My brain could work wonders to compensate for my damaged auditory nerves—fine tuning my lipreading skills and filling in the blanks of what I missed in other ways.
  • I didn’t even know that I could lipread until the doctor who made my diagnosis in grade school told my mother, “She has likely had a hearing loss for years. She is lipreading everything I am saying.” 
  • I was clueless that the reason I could never keep my head bowed while my Sunday School teacher prayed—I was admonished when I was caught—was because I needed to look up to watch her speak in order to understand what she was saying. I wasn’t simply being defiant, I was lipreading.
  • I didn’t know I needed to advocate for myself. Even if I had, I wouldn’t have known what that looked like, because I didn’t know anyone else like me. I didn’t know I wasn’t the only one.


It took looking back at my childhood from my early 40s to recognize some things were even related to my hearing loss.

No one suggested hearing aids, and I was left to figure out my hearing loss on my own for my entire childhood. I didn’t see an audiologist or have another audiogram, outside of public school screenings, until I was married. I tried hearing aids from 1980 through 2009. That is almost three decades of relying on audiologists—who I always had considered experts—to teach me everything I needed to know about my hearing loss, hearing aids and anything else that was available to me. It wasn’t until I joined an online hearing loss support group at age forty-eight that I realized how my audiologists had failed me. None of them had thoroughly explained the particulars of my audiogram, outlined realistic expectations of what hearing aids could do for me, or steered me toward services or equipment that might help me cope better. I even discovered that I have severe hyperacusis (officially diagnosed at Mayo Clinic in 2010) through my own research.

Chelle:

As a teenager I started  losing my hearing and in my early 20’s I got my first pair of hearing aids. As of now, that’s 30 years of hearing aids with 6 different brands. With all those audiologist visits and all they did was sell me hearing aids or tweak my programs (more when digital hearing aids came along).  For over 15 years not one audiologist offered me information on support groups. The biggest thing they never told me was that my hearing aids did NOT fix my hearing loss.

  • Everyday I struggled to hear at work.
  • Quite often someone would ask me if my hearing aids were on when I asked for a repeat.

It  left me feeling inadequate and like it must be my fault somehow. I shied away in social situations and my young kids would often help me hear, translating what was said. Why did I understand my kids more than adults?

Through my own efforts, I found support groups for hearing loss where I found new resources and learned:

  1. Hearing aids work best within 6 feet. That’s why I couldn’t hear from other rooms even with my hearing aids on. I learned this many years into wearing hearing aids from my state Deaf and Hard of Hearing Center.
  2. Hearing aids work best in quiet environments with good acoustics. The room could be quiet and I might still have a hard time if the acoustics are harsh. Reverberation (tiny echoes) aren’t something hearing aids can process well unlike normal hearing. Again learned through classes at my state Deaf and Hard of Hearing Center.
  3. No audiologist explained my speech discrimination scores. Without hearing aids or my eyes I had a 30% word discrimination. With my hearing aids and without looking my hearing aids gave me a 60% percent word discrimination. With my eyes and me being able to lipread, I got 90%. Me lipread? Yes, I use lipreading even though I didn’t know I was doing it for years.   I learned this reading a book, Missing Words, many years later also.
    1. None of them told me I had lost certain consonants due to being profound deaf in that frequency range. That’s why the words I heard had holes and why it remained difficult for me to understand speech.
  4. I used lipreading as a natural instinct. Learned after taking the Speechreading class and then teaching it over and over. Hindsight.  

Sometimes we don’t know what we heard was wrong, which happens to us all.

Virginia:

While working for one of the top twenty private companies in America, I was sitting in a management meeting when the president of the company directed a question to me personally.  I answered the question, there was no further comment, and the meeting continued. Afterward I went back to my office, my boss walked in and said, “You know you really embarrassed yourself when you answered that question. I was devastated and humiliated. Apparently I had misunderstood the question and answered inappropriately. From that time forward, whenever I’m in an important conversation or ask a question that’s obviously noteworthy, I will repeat the question back to the speaker to confirm my understanding before commenting or answering any questions. I never want to assume I understand what’s being said in that kind of environment again.

Once we all learned more about our hearing loss, we felt like years were wasted, diminishing ourselves and taking the extra burden of communication with a dash of shame thrown in. Hearing aids were the only option we were given without knowing their limitations. Once we found each other we learned alternative solutions and better self-advocacy skills.  We could have been more successful with our hearing loss earlier in life if we had been given more tools by our hearing professionals than just hearing aids, or least pointed to one of several support groups.  

Hearing Aids Are Only The Beginning

Hearing aids improve the lives of those with hearing loss but it’s only the beginning. Hearing aids aren’t called hearing miracles for a reason. There’s a variety of other coping strategies which go hand in hand with hearing loss.

A good audiologist is imperative to successful hearing aids. Most people with hearing loss won’t get hearing aids for an average of seven years, that’s seven years of muted life. Sudden volume makes the world sound harsh and can come across as brutal to the senses. This is why so many hearing aids wind up in a drawer somewhere never to see light again. Not all audiologists prepare people for this. The better audiologist will turn down sounds until the person with hearing loss gets used to noise again and then inch up as needed. Building up to sound again requires effort and determination but is well worth the effort, like all good things in life.

With today’s new hearing aid technology, there are hundreds of adjustments that can be made. Beware of the programmer who sets according to the audiogram only, tweaking is necessary and there should be an open invitation to come back as necessary. It’s the hearing aid wearers responsibility to keep track of offending noises and good noises, this helps the audiologist program the aids more personally.

Don’t be afraid to keep shopping for audiologists. It took me four tries to find one I liked here in town. His programming ability is over the top. Since he adjusted my hearing aids, other comment on how much better I hear and I myself am amazed what I’m hearing now. Programming is everything to successful hearing aids. I’m glad I didn’t settle for mediocre.

Support groups also can make a huge difference to those with hearing loss. Meeting others with hearing loss is like finding a personal tribe. People share their stories, their coping strategies and their knowledge of technology. There’s online support groups such as the SayWhatClub (SWC) and there’s face to face, organized meetings through local chapters by The Hearing Loss Association of America (HLAA) and the Association of Late-Deafened Adults (ALDA). Each of these groups have a yearly convention. It is hard of hearing culture for four glorious days. There’s education and instant friendship. Here, with these groups, a person can become comfortable with their hearing loss.

Some states provide classes for the hard of hearing. Utah has a class called Living With Hearing Loss based off Sam Trychin‘s program. They also offer classes in sign language, speech reading and often hold seminars geared to the hard of hearing. Many people attend meeting other hard of hearing people for the first time. Knowledge is power.

Self advocacy goes hand in hand with support groups. The hard of hearing have a voice and we need to use it. “Please face me when you talk, I hear better when I see you.” It requires showing up early to events to explain the FM system and how it works. It’s telling people how you hear so they better understand.

Some guidelines to advocating:

  • Speak up! The hard of hearing are a quiet lot and we feel bad for stating our needs.
  • Don’t wait, do it now.
  • Prepare in advance, make a plan if needed.
  • Be prepared to educate.
  • Be nice when educating others, a positive attitude will get you further.
  • Seek support when needed.

It takes courage do this. Believe in yourself and tell people what you need. You have just as much right to the world as the person next to you. And if you don’t know what is needed, educate yourself. If you don’t know how can anyone else know? There are lots of good books out there on hearing loss and also support groups will help a lot with this too.

Assistive Listening Devices (ALDs), also called Hearing Assistive Technology are bonus toys for hearing aids. They help with one on one conversations, in cars and in small groups. These include; telephones with volume control and captions, devices to help with the television, personal amplification systems which work with or without hearing aids, FM systems and loop technology. There’s CaptiViews in theaters now and caption glasses, free to use. All these devices help keep the hard of hearing independent.

Some devices are expensive and others not so much but isn’t staying active in the world worth the price? Keeping up with the table conversation with family? Attending that class or group? Going out to eat with friends? There is no shame in using these devices, just as there is no shame in wearing glasses, using a wheelchair or having braces on our teeth. It’s what is. ALDs enable us to continue to socialize and participate in life.

The technology in today’s hearing aids is amazing but I need a combination or all the above to make it work for me. If I didn’t have all those tools available to me, I wouldn’t cope as well as I do in society. Hearing aids alone wouldn’t have kept me asocial as I am. I’m empowered by all the above, not afraid to go out by myself to restaurants, attend workshops and events. I’m equipped to deal with most of I run into therefore keeping myself independent.

For more reading:

Self Advocacy:

http://www.edac.org.au/letmespeak/html/selfadvocacy.html

ALDs or HAT:

http://www.asha.org/public/hearing/treatment/assist_tech.htm

Coping Strategies:

http://www.nchearingloss.org/coping.htm?fromncshhh

My favorite book on hearing loss

Missing Words by Kay Thomsett & Eve Nickerson

the Sound Bite

Wasn’t it just last fall that the Sound Bite hearing aid came out?  I remember thinking it was crazy idea.  What about eating???  How does that magnify general mouth noise while chewing?

  My friend is a dental hygienist.  She gave me an extra SoniCare tooth brush last December.  It took me over a month to pull it out of the box and think about using it.  I was surprised how much I loved that tooth brush right away.  Talk about clean teeth!  I start out with my lower teethand it’s loud, it’s mechanical.  Then I moved to my upper teeth and holy cow!  That thing is incredibly loud.  I immediately though of the Sound Bite and realized they might be onto something there.
  I wonder if the person who thought of the hearing aid started out with sonic tooth brush?

Adjusted

Over a month ago while in Chicago, I realized my hearing aids were jumping on loud noises so much they were basically knocking out my hearing so I went to a new audiologist.  He was suggested to me by a friend but he’s new to the Phonak brand.  He made a call to the Phonak company and found  out the ‘global’ compression was on all the way.  So the audiologist took it all the way off.

Over the last month I couldn’t stand all the loud noise.  Some of it hurt.  I went to the reading for the ten year celebration for the college writing community, the crowd roar after the speeches had me ready to rip my hearing aids out.   People stopped me to talk afterwards but I might as well have been deaf.  I understood what they said after a few minutes but I couldn’t wait to get out of there even though a part of me would have liked to mingle.

Standing at the train platform in the middle of a busy street near a traffic light also proved impossible.  I could barely understand Susan as we waited for the train, all I could hear was the vehicles as they idled at the light waiting it to change or zooming past.  I took  my hearing aids out and relief washed over my whole body and I could understand her better.  That’s not how hearing aids are supposed to work.

Yesterday I got back to the audiologist.  He’s not the friendliest guy and he appeared to be in a hurry. Before I could tell him everything I wanted to about the hearing aids, he was on the phone with Phonak again.  I wanted to tell him even his voice seemed too loud and hurt some in the little room.

He put some ‘global’ compression on again.  He mentioned horrible traffic noise to the person on the other end of the phone, did a lot of “uh-huh’s” as he navigated the hearing aid program and came up with a menu.  It included traffic noise, road noise and crowd noise.  (And do you know, the menu comes with cute little pictures too.)  I interrupted him to tell him, “Yes!  All that!”   He didn’t acknowledge me and made a few more adjustments in the program which didn’t include tweaking the part on my audiogram  menu then hung up the phone.

He said, the person on the phone suggested trying these changes first for a few weeks to see how it goes before messing so not to overdo it.  It’s easier to keep track of what they have done.  More tweaking can come later.

Can I just have the lady on the phone as my audiologist instead, I wondered.  I give him credit for calling the calling the company.  I know I should find one audiologist and stick with him/her but so far I don’t feel like I have a good fit with an audiologist.  I may go back one more time.  I just wish he wasn’t being interrupted by doctors and such in a hurry.

I wore my hearing aids for the rest of the afternoon until about 9:30 last night.  They were more comfortable to wear so hopefully this does me for a while.

A Reading Tonight

I belong to one of 7 writing groups through our local community college.  Today is their 10 Anniversary Celebration.  There’s lots of writing activities going throughout the day and tonight around 6 they are having one person from each writing group give a 5 minute reading.  My group asked me to represent them.

It’s hard to put everything into I want to say about hearing loss in 5 minutes, I mean what to say???  I asked my group of friends in theSayWhatClub and they suggested I take on hearing aid reality.  So I did  and here it is:

Hearing Aids 101

Hearing aids aren’t called hearing miracles for a reason. Hearing aids help but they can’t reproduce true hearing. Technology is making advances but there is no cure for hearing loss. Those of us who wear hearing aids learn their limits but some hearing people around us seem to think once we pop our hearing aids in, we will understand everything. I’m here to tell you, even with our aids in we are still hard of hearing.

Sensorineural hearing loss, also called nerve deafness, is the most common type of hearing loss and it is permanent. With this kind of loss, some sounds come across at normal volume and others not all. Usually it’s low tones heard best with the higher frequencies missing. High pitches includes birds, bugs, timers, phones, kids and many women’s voices. In the alphabet many consonants are higher frequencies and vowels come across in low tones. Out of 26 letters in the alphabet, I hear five of them best; even with my hearing aids in.

Imagine going through your day hearing mostly vowels and only some consonants clearly. Many conversations are a constant puzzle to piece together. Take the sentence, “I’ve got to get my keys,” and try understanding it this way: I ot et I ee’s. For those with hearing loss, their mind races to fill in the blanks much like Wheel of Fortune with letters blanked out. Life becomes the Wheel of Fortune, only can I buy a consonant, please? The vowels aren’t as important. My hearing aids help me get a few more sounds but I still miss whole words. A busy day of ‘hearing’ can lead to exhaustion with all that concentration and mental activity.

Hearing people seem to think, “If only she would turn up the volume, she could hear.” Here it is in simple terms; volume distorts. Some sounds I hear well and some I do not. Take the word “shout” and try shouting it out. The “OW” hurts my ears coming across loud and clear but the “sh” and “t” are lost in “OW.” Shouting won’t work and neither will hearing aids with a super high volume because technology hasn’t caught up to missing frequencies.

Mechanical hearing pick ups mechanical noises better than sounds I want to hear. I can’t hear my phone ring, my cat meow, birds sing and I have trouble understanding speech but I do hear the garbage truck grind to a halt in front of my house, the banging of the garbage bin as it’s tipped over and set back down. In cars, I hear road noise better than the person sitting next to me. In restaurants I hear fans, refrigerators and soda machines, not to mention the clashing of plates and clattering of silverware far better than the person sitting across from me trying to have a conversation. This also applies to large gatherings. All I hear is the roar of the crowd which drowns out the person in front of me trying to talk.

Technology has come a long way and digital hearing aids have helped in that these noises don’t hurt my ears as much as they used to but I still can’t hear whispers, understand the television without captions nor lyrics in songs and I can’t understand what someone says from another room, even with my hearing aids in. Listening to people takes mega amounts of concentration. I use some lip reading, watch body language and facial expressions for clues and sometimes I still get stuck on a word or a whole sentence, even with the help of my hearing aids.

I don’t leave the house without my hearing aids because without them I am more lost and every little bit helps. The old analog hearing aids were much harder to wear all the time because they turned up all the noise, including those I already heard well. The newer digital ones suppress some sounds and then try to take sounds I can’t hear and turn them into sounds I can but even that program has it’s limits.

Eye glasses slip on and replace vision but hearing aids can’t do that. They help but they do not give me my hearing back. All the adjustments in the world will not replace true hearing. Please know I am tormented at my own failure to understand my native tongue, simple English. I come down hard enough on myself without others getting impatient with me. Once sounds are gone, they are gone and there is no magical cure.

City Hearing

We are in downtown Chicago visiting my boyfriend’s brother.  I’m having a great time and I just love the skyscrapers and architecture.  A few funny hearing situations have popped up.

The other night sitting by the pool (wearing hearing aids), I swore I could hear the “L” trains which are above the street, adjacent to the high rise condo where we are staying.  “No it’s not the train,” my boyfriend tells me.  I tell him, “I swear there is a rumble – is one coming, I ask?” No he assures me, one is NOT coming.  “What is that noise then?”  I’m grasping for straws.

By then the others have joined the conversation.  No one hears anything.  I tell them I hear this low rumble in pulses.  They are all quiet for a moment and listen for what I’m hearing above all else.  A lady visiting with us says it could be possible road construction on road near by.  They decide it’s city noise.  It’s typical city rumble or the pulse of the city.  OK, I think, I guess I can understand that, but why do my hearing aids pick it up so well and how do they filter it out so easily???  I dunno.  Perhaps it is the mechanics of hearing aids.

The next day, as we toured the city on the “L” train, I took my hearing aids out. I can’t hear while traveling on the train.  Also, certain busy places of business it’s the same thing, I take my hearing aids out.  Last night we walked to the Cityscape bar at the Hilton.  It was Sunday night, traffic was low and the “L” trains had slowed down a bit.  A Harley motorcycle roars by and I can’t hear again. My boyfriend says something and I do not respond. He thinks I’m ignoring him but I tell him, “I can’t hear”… The motorcycle has gone by and is a distant rumble and “I still can’t hear,” I tell him.  It’s weird. I think my hearing aids shut down.  All of a sudden the volume goes back on to my normal and I can hear.  It dawns on me (after almost 2 years with these hearing aids) that they shut down in noisy situations to protect my remaining hearing or to keep me from wanting to rip them out of my ears. Two years and I barely notice this?  Who am I?  Where am I? Do I pay attention?

So, that’s why I can’t hear in noisy bars or on the “L” train.  My hearing aids adjust for me.  Interesting.  How come I never noticed this before???  I feel like a dimwit.

word discrimination

I found out some time back my audiologist is not really an audiologist. He is a hearing instrument specialist.  I was talking to another lady in my HLA group about him refusing to do a yearly hearing test on me.  That is when she told me the difference in his title.

We were discussing my word discrimination scores.  His word test involved a taped, well articulated male voice.  I scored around 70% in both ears.  She looked at me funny and said she didn’t think that was right.  It sounded high to me too.  After all, it’s done in the sound proof booth which has no reality in today’s noise packed world.  Add any noise at all my word discrimination drops.

Anyway, this guy preferred to tweak my programs according to how I was hearing.  After a period of stress last spring I was wearing my hearing aids at the highest possible volume.  I went in and he tweaked.  It seemed better… for awhile.  Then during the holidays I was under a lot of stress again.  I went in and told him I was having a hard time and maybe it was time for a hearing test again. He declined saying a yearly hearing test wasn’t needed. Usually hearing didn’t drop enough in a year to make much difference.  After two noticeable drops from me???

Last Monday I had another hearing test.  This time it was a female audiologist and she performed the word discrimination test herself.  After all the testing was done we sat down and compared the audiograms.  The last one I had was Dec 09.  I had a 10 to 20 decibel drop in each frequency.  Isn’t that a lot?  My word discrimination, 40% in left ear and 20% in my right ear.  What a big difference!

Why can’t the do a female voice test and a male voice test and average out the scores?  That seems like a more fair representation of what I’m understanding.  To make it even better they should add noise in the background while performing the test.  No where do we have quiet environments like the sound proof booth.  Even as I sit here and type in my own house, I have the clacking of the keyboard as I type, traffic noise and the heater running.   I know the booth gives them something to work off of and a good audiologist will take into consideration and tweak out.

Anyway, it was interesting to me to see the differences.  I almost feel more validated.  Really, 70% in the most ideal situation gives the wrong impression of my day to day experience.

So my hearing aids are reprogrammed and things sound a little sharper again.  I heard a rattle in the car I didn’t know was there before.  I was feeling muddled before. It didn’t seem like it made much difference in understanding people with or without my hearing aids.  Now I can tell the difference again.