SayWhatClub

Tweaking a Hearing Aid Program..and Cookies

Yesterday was another trip to the audiologist to get my hearing aids programmed. For the last three months, certain sounds made me cringe, clench my teeth and rip out my hearing aids. Those worst of those sounds were in the kitchen; chopping vegetables on the cutting board, moving pots and pots around and someone setting something hard down on a counter/table. Those noises struck a nerve deep in my brain on the verge of pain. To top it off, rooms with bad acoustics made for such terrible hearing, I couldn’t understand any better than with them out.

At first I tried to bear with it, thinking my brain would get used to the harsh noise. Hearing people cope with noises all the time, right? However, it didn’t take long before I stopped wearing my hearing aids unless in public and even then, I could hardly wait to take them out. It took me about three months to get back to the audiologist, mainly because my favorite audi lived in another state about 11 hours away. I did not want to go through another round of finding someone I liked while living in Arizona.

When I moved back to Salt Lake, it still took me 6 weeks to see my audiologist. My time was spent settling in, getting things situated, pursing a business, skiing, kids…excuses, excuses. Mostly I only wore my aids when I absolutely had to but sometimes I tried to commit to the ten hours a day like last Monday morning.  I put them in and tried in spite of the pain factor .  Later that night while cooking, my boyfriend came home and the noise increased. I took them out, tucking them away into their box and thought, “That’s is it. It just isn’t working for me. ”

Tuesday afternoon while running errands, I drove to the audiologist office to make the appointment in person (I avoid the phone where I can). They had time for me the next afternoon and I thanked the office lady with all my heart. The next day, I barely made my appointment thanks to wasting time on FaceBook and a broody hen (we have three chickens).

I checked in and grabbed a cookie off the plate near the counter and sat down. Less than five minutes my favorite audiologist welcomed me into his high tech office. He hung the programming ‘necklace’ on me and we caught up until the programs came up on the computer. Then, he asked how my hearing was, and I told him.

After taking my right hearing aid off (I think), he slipped a very small wire not far into my ear and put my hearing aid back in. He told me this would measure the sounds how I heard it.  Then he recited a nice little rainbow poem and watched the monitor. He fiddled around for a few minutes on the computer watching the upper right screen mainly.

Four screens to play with

Then he put on noise that simulated a busy restaurant. “How does that sound,” he asked.

I think the left side of my lip curled up. “Annoying,” I told him.

He played with the program a little more, turned on the restaurant noise again. “How is this? Tolerable?”

“It’s not my most favorite sound in the world but, “I think so.”

“Would you wear your hearing aids in this environment?”

I was totally using lip reading at this point to hear him but I always use lip reading in those kind of situations. Was the noise intolerable? No. Would I wear my hearing aids this way? Yes, I could tolerate it.

“I’m comfortable here. I wouldn’t take them out.”

We chatted a few more minutes as he took off all the gadgets and I noticed a big difference.

“There were a few sounds spiking that would drive anyone crazy. This isn’t a typical situation but we got it fixed now.

“Ah! Then I’ll commit to ten hours a day again,” I told him.

He laughed. “I’ll walk up front with you to make an appointment for four months from now but if anything bothers you, come in sooner.

“You bet now that I’m back. Thanks!”

Upfront we made the appointment and I grabbed another cookie on the way out. How can you not love an audiologist who has a plate of fresh cookies out?

Driving didn’t bother me and I could hear the songs playing on the radio. I cooked dinner later without wanting to rip out my hearing aids. I woke up this morning and put them back in wearing them over ten hours. It’s amazing how much tweaking a program makes in hearing aids.

 

Gael Hannan at the SayWhatClub Convention

Gael Hannan is one of our favorite hearing loss advocates and she will be a workshop presenter at the 2013 SayWhatClub convention in Williamsburg, VA this year. Her blog is a must read and is at the Hearing Health website which you can read here by clicking here: Gael Hannan. She grew up with a progressive hearing loss. She’s a director for the board of Canadian Hard of Hearing Association (CHHA) and a key developer for the Sound Sense program along with many other projects related to hearing loss.

gael_hannon

Her blog is one of my favorites to read because she often uses humor to discuss our daily mishaps. Having had hearing loss all her life, her perceptions hit the nail right on the head. Here are some of my favorite clips from her posts:

On relationships with audiologists:

From the very first meeting, client and professional should establish a collaboration that will offer powerful benefits to both parties. They have clearly defined roles and share the responsibility for success. Otherwise, audiologists will continue to struggle with clients who balk at every suggestion, and hard of hearing clients who, if they are not exposed to additional communication strategies beyond their hearing aids, will not develop the best possible skills to successfully manage their hearing difficulties.”

It is hard to find a good audiologist who listens and knows what he/she is doing.

Hearing Aid Batteries

“The most challenging aspect of hearing aid batteries, beyond making sure you have some, is the act of putting them in. These cells are small beings, requiring manual dexterity. Battery manufacturers understand this and are always working on new designs for packaging and insertion. There have been dial-a-battery packages and some that push the battery out, but at the moment we seem to be back to simple packaging.”

Lots of good tips about batteries in this post. My hearing aid batteries went out last week at work and I forgot to put more in my purse so I spent the day hearing without one hearing aid and the other beeping at me all day to let me know it was going out too. I managed to make it announcing to each client, it was one of those days….

A Bad hearing weekend

“On Sunday evening, as we got ready for my son’s hockey game, there was the usual move-your-butt-we’re-running-late kind of family nattering going on around the house. Yelling up the stairs at my son, struggling with a two-storey conversation, I finally asked him to kindly come down so I could understand what he was saying. He tapped me on the shoulder from behind. He had been downstairs and came up to find me yelling up the stairs at a phantom. He found this very funny – me, not so much.”

I have three kids and there’s been a lot of hearing loss moments between us too so I got a good laugh here.

The whisper game

But back to whispering, something that gives hard of hearing people the willies. Whispering is about intimate secrets just beyond our reach, just beyond our capability. When someone whispers into our ear, their message is instantly compromised. If people whispered at us the same way they talk to us – face to face, with reasonable lip movement and facial expression – we would have a fighting chance of comprehension.

But that’s not how people whisper. They move in close to our ear, their lips out of our sightline. ‘S’ and ‘F’ sound the same and emotions are colorless, because there is no tone of voice or facial expressions to help us out. The puffs of air we feel against our ear tell us nothing – they are just staccato bits of oxygen tickling our pinnas.”

Whispering willies, I get them. I always jerk my head away as soon as someone does that too.

sounds we can hear

As a person with hearing loss, there are many sounds I’d love to hear well again, like the sibilant ‘s’ and Christmas bells. There are other sounds that I’m happy not to hear well any more – a person blowing their nose, comes to mind, or a cat expelling a fur ball.”

Sometimes it’s not fair what we hear and don’t hear.

Meeting others who can’t hear

When you get home, your family  will notice something different about you. They won’t be able to put their finger on it – but they’re thinking maybe something about the eyes and they will be right. Your eyes aren’t crazed, just a little shiny, glittering with the passion of the newly converted. You left the house frustrated with your hearing challenges, and have come home with a new sense of,I have hearing loss – and hooray, that’s OK!”

So come to the SWC hearing loss convention to gain a new awareness with Gael Hannan. We are excited to have her present “Ear Rage” at our convention. Please join us and register now at: http://www.saywhatclub.org.

Note: This convention has ended, but we have another coming up soon!

Tolls of Hearing Loss by Pearl Feder

It seems as though I’ve had hearing loss all my life but I didn’t.  I’ve only forgotten what it’s like to hear conversation without saying, “excuse me,”  “I’m sorry but……,”  ” could you repeat that please?” Music was never the same but I adjusted. People with hearing loss are good at that.  If we aren’t good at adjusting, we are good at faking it. At least, we think we are good at it.  When I was twenty years old, the Otologist told me that I would be totally deaf by age thirty.

It’s been forty years since I lost all my speech discrimination in my left ear.  I avoided wearing a hearing aid in my right ear until I was forty years old.  Someone had the guts to tell me that I’m not hearing everything that was being said to me at meetings, and that I should consider getting my hearing checked.  That gutsy individual and I have been good friends ever since.  I did land up getting a hearing aid on my right ear and my life forever changed.

Over the past nineteen years, my hearing barely changed until about two years ago.  I needed some minor adjustments to my aid.  Then again, about three weeks ago, I put on my hearing aid and thought the aid wasn’t working.  I changed the battery thinking, of course, it must be the battery.  But over the next few hours I began to realize something had changed.  Voices around me sounded muffled.  I couldn’t catch the words on my radio while driving. I could not hear the voices on the telephone, and worst of all, my own voice didn’t sound right.  The voices on the telephone were too low. No matter how much I turned up the volume on both my aid and the phone, I couldn’t hear.

My throat was hurting at the end of the day and I realized I was speaking louder than usual because.  I was exhausted from the emotional and physical strain of “listening.”  My friends noticed not only was I not catching conversations, they had to tell me to lower my voice in public places.  Immediately, I made an appointment to see my audiologist.

I was hopeful the audiologist would find something wrong with my aid.  After all, I had a hearing test only eight months ago and nothing had changed at that time.  As soon as I entered his office, he introduced me to his fourth year resident intern.  Then, he informed me that they would be doing a full audiological evaluation.  This way, I would not have to repeat it in four months, a year from my last one.

I hate, hate, hate, hearing tests.  They always insist on testing my left ear, even though it has been in the profound range for forty years.  With the shooshing in my right ear, and the deafening words in my left ear vibrating through every bone in my body, I want to scream.  “Isn’t this illegal? You are blasting loud noises in my ear!  Is it possible to be any deafer than I am in that ear?”   My body is thumping to the sound of BASEBALL, ICE CREAM, HOTDOG, AIRPLANE,  . . .

I have to laugh at the words used to evaluate us.  Don’t the audiologists realize we have those words covered?  The right ear goes through the same torture.  Only this time, as the words become louder with the added shooshing, my right ear begins to hurt.  Haven’t these people heard that loud noises can make us deaf?  Jeesh, I want to rip the headphones off my head.  But I continue to be compliant.

At the end of the test, the intern says to me, I understand you are very sensitive to change, there’s been a small change in your speech discrimination and the Doctor will go over it with you.   Hmm, yes, I’m sensitive to changes in my hearing because I know my hearing loss issues better than you do, is that what you mean by sensitive?  Small change in my speech discrimination, okay, I can deal with small change.  The Doctor explains to me that my word recognition has gone down from recognizing 12 out of 25 words to 7 out of 25 words.  Meaning, eight months ago, I had speech discrimination of 48% and its decreased today to 27%.

However, that’s not what “we consider a big change” he states.  I immediately respond with, but, if I am in a conversation with someone or groups of someone’s, we don’t speak one word sentences.  We speak in a flow of words, which make a paragraph which turns into a conversation of 100’s of words being said.  If I am only grasping 7 out of 25 one word sentences, what am I really hearing in a paragraph of words?

The Doctor said, okay, let me have the intern read a paragraph from a book sitting behind you.  As far as I was concerned, he could have put the intern in front of me and I would not have been able to tell him anything that was said.

As it turned out, he was very surprised that I could not even tell him what the subject of the paragraph was.  He then decided to reprogram the aid, while the intern read the same paragraph. As you may or may not know, with all the new technology, the computer hooks up to our aids and can program it instantly.

The second time, I managed to give him three or four words but still did not know the subject or topic.  The third programming produced a much better result. Though I could not give him word for word, I was able to tell them the subject and a synopsis of what I understood the paragraph to mean.  I was thrilled but I was grasping for straws and with those results, all I wanted to do was leave the office.

I asked the Doctor why my speech discrimination had decreased and he responded that it was probably the hair cells in my coclear, dying. My heart sank. All I wanted him to do was tell me it was just the aid.

The Doctor asked that I come back next week. I decided to return after my vacation in three weeks so that I could have time to adjust.  As it turned out, within two to three days, I began to hear exactly as I did prior to the adjustment.  With my leaving this week to go on vacation, I did not want to start looking into alternatives.  What alternative do I have?  Once I see whether more adjustments to my hearing aid can or cannot help me, I believe I will need to see a specialist who can tell me the decrease in my speech discrimination is as a result of hair cells dying in the coclear.  If this is the case, than clearly deafness waited exactly 30 years to happen.

There’s a part of me that is feeling very panicked and anxious about losing the use of communicating by telephone, speaking to my friends in a restaurant, hearing my children’s voices and other life situations that involve hearing, listening, entertainment and so forth.  I’ve always dealt with taking my aid off and feeling very comfortable in the silence.  However, taking my aid off permanently and staying in silence “forever” is not something I can honestly say, I can get use to.

Yes, I may be in some form of denial. I want to hold onto what I have. I want another hearing aid.  More than anything, I want the Otologist to give me a prescription that will unstuff my ears. I want to wake up tomorrow and have my 48% discrimination back.  But deep down inside, I know that is not going to happen.

I know the road ahead is going to be difficult as I readjust my work life, my personal life and my emotions.  I have to be okay because I want to be okay and because it’s important to me.   I’m not going to say I’m not anxious because I am terribly anxious about this change. I need to hear from others who have dealt with this type of situation.  Right now, I plan to go on vacation for a week to take a breather away from my home which has no furniture, no walls and no floors, compliments of Hurricane Sandy.  I need to get away from work and telephone calls to reduce my stress with communicating.