This Is Why I Dance....

When I named this blog "Laurie's Dance With Sound" as I began my cochlear implant journey, little did I know that I would embrace the world of "dance" in a brand new way six years later.

Earlier this year, my husband, Steve, and I walked into the Let's Dance Ballroom Dance Studio, which had just opened in our small town of Maryville, Tennessee, to explore ballroom dancing.  Surprisingly enough, we found a new passion that we can enjoy together as a couple in this new chapter in our lives as “empty nesters.”  Steve and I have been dancing the "dance of life" for the last thirty five years and look forward to dancing together in a whole different way.  After progressing through a few weeks of lessons, I knew that I needed more than just a few sessions a week.  In addition to dancing with my husband (when he was not traveling on business), I started private lessons with our dance instructor, Brandon, to explore the world of ballroom dancing on a new and different level. 

Recently, during one of my private dance lessons, Brandon and his colleague, Chris, asked me, “Why do you want to dance?”  I don’t remember exactly how I answered it but I do know that the question caught me off guard.  I have pondered it ever since, searching for some better answers.  For a few days, my thoughts flowed in my journal and I decided I would put these thoughts into writing. 

Since birth, I have lived with a severe/profound hearing loss and have worn hearing aids since the age of two.  Although I could not hear well, music has always been a part of my life because it filled my heart with emotion and needed no words.  Victor Hugo decribed it perfectly when he said,  "Music expresses that which cannot be put into words and cannot remain silent."  Music was just “pretty noise” for me when I heard it through my hearing aids.  I would play my favorite songs and albums as loud as I could so that I could feel the beat and rhythm through the vibrations and sounds.  Throughout the years, I expressed the music that I "heard" through many different forms, whether it was by playing the piano, ringing handbells in church, dancing liturgically, signing to music, and even swimming on a synchronized swim team.  Expressing a particular song in various ways with grace and passion allowed me to show how my heart and soul felt inside.

In August of 2005, I underwent surgery for my first cochlear implant, and surgery for another cochlear implant followed soon after in January 2007.  These two surgeries changed my life and my hearing dramatically.  For the first time in my life, I was hearing sounds that I had never heard before, sounds that others take for granted.  I spent much time in therapy relearning how to hear with my new “ears.” Now that I can hear almost perfectly with my cochlear implants, music has become “multi-dimensional” with the variations of the different instruments and voices.  It is more than just “pretty noise” to me now and I am experiencing a brand new world of music! 

In my daily life, I wear many “hats.”  I’m a wife, mother, grandmother, daughter, sister, friend, accountant, writer, mentor, and volunteer, just to name a few.  When I dance, I can leave the stressors of “life” outside the door for a while and just be me: Laurie.  The more I dance, the more I feel free and alive.  I lose myself in the music and the dance.  I cannot go more than a few days without music.  And now I cannot go more than a few days without dance.  I cannot find all the words to explain how I feel, but I do know that ballroom dancing has changed something deep inside me, and it is something that cannot be hidden or controlled.  When I dance, whether it is a waltz, tango, foxtrot, rumba, cha-cha, or swing, I feel a shift in my spirit and lose myself in the rhythm of the music on the dance floor.  But at the same time, my heart and soul (along with movements of my body and feet) are another instrument to be played.  When I wear my dance “hat,” I only know that I am listening and responding to the music playing in my ear, and it makes me feel whole.  Learning to ballroom dance has ignited a fervent passion and desire that I cannot deny.

I am changing in more ways than one.  As I shared previously, ballroom dancing has allowed me to “let my hair down” and be free.  It helps me to release the tension and stress I encounter in my daily “dance of life,” keeping my body and brain active, as well as helping me with my mental health.  Also, I suffer from Meniere’s disease, which is a disorder of the inner ear that affects hearing and balance, characterized by episodes of vertigo and dizziness.  I am learning how to balance and control my body and have not had a single “attack” since I started dancing!  I am gaining more confidence and coordination in my body, which is resulting in a better posture and positive outlook on life.  The extra pounds I have dropped are also a plus!

My dance instructor and the owners of the dance studio know that they have inspired me and have given me a new lease on life.  Their faith, belief and trust in me that I can dance in spite of my challenges speaks volumes.  Two weeks ago, I performed my first tango dance routine with my instructor & dance partner to "Santa Maria" at a Friday Night Party at the studio.  I was nervous right up to the time of the performance but as soon as the music started, the butterflies in my stomach went away and I just "danced."  What a wonderful feeling it was to show my joy, my emotions, and deep gratitude that I am able to do what I love as I moved across the floor.  I know that I would not have done this without the miracle of sound through my cochlear implants.

Dancing has freed me to enjoy this moment, this season in my life and makes me feel happy inside.  So, my friends, no matter what is going on in your life today, "Take Life By the Hand and DANCE!"  You will never, ever be the same.....

My Dance Instructor and Partner, Brandon and I after our "Santa Maria" Tango Routine

June 3, 2011

Nerve Deafness

I originally wrote this post in my "Book Blog" (which I rarely write in anymore) on August 20, 2005 before my first cochlear implant surgery and thought it was worth repeating.

Nerve Deafness

When I was diagnosed with my hearing loss, my parents were told that I had "nerve deafness." Lately that term has puzzled me because I can hear sounds with the help of hearing aids. How can something be wrong with my "nerve" if I can hear voices and sounds around me? I wear the strongest aids on the market and currently wear Widex digital hearing aids. I've assumed that the doctors, audiologists, and speech therapists that I've had knew what they were talking about and just accepted that diagnosis. I've grown up believing that there was no cure for nerve deafness and never really thought there was anything else out there that could help me except my hearing aids. But, that doesn't seem to be the case at all. "Nerve deafness" can be a major misnomer because it incorrectly implies that damage is to the auditory nerve and not the cilia (hair cells) in the cochlea, which is responsible for much of a person's hearing loss. In reality, the term "nerve deafness" has been around for the last fifty years or so. Until modern medicine, those of us who grew up in the 1950's and beyond are usually given this term if doctors could not find a cause of deafness. In another words, it was a "one name fits all."

I'm beginning to understand that there are several different types of hearing loss. One type is conductive, meaning that the sound comes into the ear but does not get to the cochlea or auditory nerve. That indicates that something is wrong with one or some of the bones in the middle ear. In most cases it is usually the stapes bone which has become stiff, calcified, or hardened and will not move. And when it is not moving, it is not transmitting the sound to the cochlea and auditory nerve. That is what is considered a conductive hearing loss. The cochlea and auditory nerve are usually in fine shape. I noticed on my papers from the doctor and insurance company that I have been diagnosed with sensorineural hearing loss. Which means the sound IS coming into my ear, gets through those three little bones of the middle ear and gets transmitted to the cochlea. But it is not getting to the auditory nerve very well because there is a problem in the cochlea. The cilia (hair cells) in the cochlea are dead or the fluid in the cochlea isn't there or there is something else wrong in that part of the ear. This explains why so many people are labeled with "nerve deafness" because the sounds are REALLY coming into the ear but are not being transmitted like they should to the auditory nerve. That is why I had to do the balance test back in May to determine if I had any fluid in my ear. And I did! This is where the CI comes in. My implant is specially designed to mimic the functions of the human ear like natural hearing. There will be a 22 channel electrode inserted in my cochlea and it is specially designed to protect the delicate walls of the cochlea.

One might ask how a cochlear implant is different from a hearing aid. Hearing aids only amplify sound. No matter how loud the sound the hearing aid produces, it does not provide clarity. That is why I've had so much trouble with amplifiers, speakerphones, loud noises and loud people. I've always tried to explain that "louder" is not always better. I have a severe to profound hearing loss and my ears cannot process the information that they are receiving because sound is still going through the damaged part. A cochlear implant does not make sounds louder. Instead, it bypasses the damaged part of the ear and sends the sound directly to the auditory (hearing) nerve. How cool is that???!!!

I am realizing that some people who qualify for a CI think might that there is no point in pursuing it any further because they have "nerve deafness." But the testing that I've had done has actually shown that I'm missing hair cells in my cochlea. If Mom was still here, I'm sure she would be pleased and tickled pink to know that I haven't given up on the possibility of being able to hear the sounds that have been denied to me all of my life. I have thought about her a lot lately and wished she was here to share this experience with me. I hope to be able to help other people like Susan has helped me. We all need someone to give us that "little push" and hold our hand during the journey. God is so good. He is bigger than any obstacle in my path and knows exactly what I need at the right time. His timing is so perfect!

How A Cochlear Implant Works - *NEW*

Here is a new video on YouTube on how a cochlear implant works. . . by Advanced Bionics. . .a good one to see and pass on to people who want to know more about them.

Click here:
How A Cochlear Implant Works by Advanced Bionics, LLC.

There is another link in my right sidebar on a different explanation on how cochlear implants work.

I have the Freedom Processors by Cochlear and love my "mini-computers" that allow me to hear and comprehend sound!

Have a great day and enjoy the fall weather, wherever you are!

Medical Alert Tattoo

I've been thinking about this for quite some time and thought I would put this out there for comments, ideas, and suggestions. . . .

Because I have bilateral cochlear implants, I wear a medical alert bracelet that has my name on it, that states that I have a cochlear implant, and that I cannot have an MRI for any reason. What if my bracelet falls off in an accident? Or my processors? What if I cannot speak for myself and no one else is able to speak for me? No one would know unless they knew me or found my identification and medical information in my purse.

Should I get a medical alert tattoo somewhere on my body so that it is permanent and always there in case of emergency? If I got one I wouldn't want it to be too large. . . maybe the size of a quarter or my current bracelet. Is there even such a thing? If so, where is the first place someone would look for medical identification? Or what part of the body is noticeable while preparing a patient for an MRI or medical procedure? Has anyone ever gotten a medical alert tattoo? Would you do it for your child or family member for any medical condition? If you needed a medical alert tattoo, where would you put it? I'd love to know.

Or, if you are a nurse, doctor, paramedic, or EMT, where would you look?

Bilateral Cochlear Implant Anniversary

A year ago today I went under the knife again to have my second cochlear implant surgery. What a year it has been! I truly love hearing in surround sound and am forever thankful and grateful for the opportunity to hear this well in my lifetime!

Today (Wednesday) was an interesting day. I participated in a research study for a graduate student at the University of Tennessee (Knoxville) in the Audiology department. I had to answer some general questions about my hearing history and my implants. Then she put me in a chair inside a sound booth. And attached five electrodes/sensors to my head and earlobes. I had to be very still and watch the movie "Finding Nemo" with close captioning and NO SOUND. The sound that I did hear in the booth was the word "she" repeated over and over THE WHOLE TIME! Imagine hearing "she-she-she-she-she-she-she" constantly while trying to watch TV . . . at varing levels of sound. When we started the test, she kept stopping and asking me if I was comfortable. I told her I was fine but she wasn't satisfied with her readings or whatever on her computer. She kept turning down the "she-she-she" volume and finally I told her that if I was at home trying to work on something and the TV was too loud, I would ask for the volume to be turned down. So, she turned it down a little more. It went up and down several times during the test. When the volume got louder, I could feel my heart racing faster. We took several breaks during the test so I could move around a bit, drink some water, etc. I was not allowed to move at all or cross my legs during the test. At one point my neck, shoulders, arms, and fingers got numb! The test lasted for about an hour (and I didn't get to finish the movie!) The student was very glad for my participation and I was happy to help. I got paid for doing it but I told her she could keep the money. She is looking for more participants in the Knoxville, TN area so leave a comment if you want to help her with her research project.

On Monday, I went to the same department for a mapping session for my cochlear implants. Last week I started having to replace my batteries EVERY day instead of every 2.5 days like I normally do. I sent in an order for batteries right away because I was running low FAST! I also sent an email to my representative at Cochlear about this wondering if I got a bad batch of batteries. She said it was probably my map or processor and advised me to see my audiologist. Luckily I already had my appointment with Julie set up weeks in advance. Julie did not want to map my processors because she was concerned that I had a defective one. It is still under warranty and she contacted Cochlear Corporation to order me a new one. In the meantime, I'm using a loaner processor. I could tell a difference in the sound right away when I started wearing it. It was as if someone turned the light on and the sound became clearer and crisper. BUT I'm still changing batteries once a day. Something still isn't right. Julie will let me know when the extra processor comes in and I'll get mapped before our insurance runs out next month. (Still working on that issue and it has consumed quite a bit of my time!)

Someone asked me if I was hearing new sounds and I had a hard time answering that. What I hear sounds so normal and complete that I don't really pay attention. But, I do notice the sound of the fan when the heat kicks on, the clicking of the ceiling fan in my office, the rising and ebbing sound of the rain on the roof, the pitter patter of the dogs' feet when I call them, etc. I also love the sounds of silence, too, early in the mornings - clocks ticking, birds chirping, the coffee maker making my coffee, certain people in this house (I'm not naming any names!) slurping their drinks, the dogs breathing or snoring under my desk, computer keys clicking, the increasing sound of the cars going by as they go to work, school, etc. I'm doing better on the phone but still have a phobia about answering it. I can hear and understand more and more phrases on the TV & radio. Life is good. I have no complaints!

Now, excuse me while I go finish "Finding Nemo" . . .

(Note: I've added a link on the side bar for my favorite posts that were buried in the archives. Enjoy!)

Two Year CI Anniversary

Today is the two year anniversary of my first CI activation. My audiogram has gone from this to this to THIS! (see below and click on picture to enlarge)




I know I've said this before and will say it again - I never ever dreamed that I would hear this well in my lifetime - EVER. I've gone from a severe/profound hearing loss to a mild hearing loss with one CI, to almost normal hearing with both CI's. I have truly experienced a miracle because of medical technology and only God could make this happen. Nothing is impossible with God - NOTHING! So, when you think that God doesn't care or hear your prayers, just remember that He is always moving forward ahead of you and making plans for something better, even if it takes 40+ years. And for that, I am forever grateful! Alleluia, Amen!

Bilateral CI Hearing Test Results

Last week, August 30th, was my two year CI anniversary. Things were too crazy last week for me to do an "anniversary post" so I'll do one today. It's hard to believe that two years ago, the remnants of Hurricane Katrina blew through Knoxville during my surgery. Two years ago I could not hear birds singing, clocks ticking on the wall, hear the voice of a child, or even have a conversation on the phone. Today all of those things are possible with my CI's. Making the decision to go through surgery (twice) to hear better has been one of the best decisions I ever made and ranks right up there with the decision to marry my husband and have our four children.

On August 13th, I had my hearing tested with both CI's and recieved the audiological evaluation from Susie, my audiologist. Here are the results:

AUDIOLOGICAL EVALUATION

POST BILATERAL COCHLEAR IMPLANTATION

Laurie P. was seen for an evaluation on the above date. Medical history includes congenital genetic severe to profound bilateral sensorineural hearing loss.

She wears two Cochlear New Freedom cochlear implants (CI). Mrs. P. received her first cochlear implant at the left ear in August 2005 and her second implant at the right ear in January 2007. She received aural rehabilitation training from October 2005 until September 2006. Sessions were scheduled one to two per week for 45 minutes each.

In July 2007 Mrs. P. was seen for consultation regarding aural rehabilitation therapy using the bilateral CI's. She reported much improved speech discrimination and spatial awareness with the second implant. Mrs. P. stated that background noise sounded like it was in the background now, not in her ear as it had previously with one implant only.

Audiological testing using narrow-band noise as the stimulus revealed aided thresholds within the normal range for the condition using both implants and using each implant individually. Speech discrimination testing using the Synthetic Sentence Identification test (SSI) was assessed in the following conditions:

• Both CI's in a quiet condition at 60dB SPL: Outcome: 100% correct
• Both CI's with competing background noise: Outcome: +10dB speech/noise condition - 100% correct; + 5dB speech/noise condition - 60% correct; 0dB speech/noise condition - 1st attempt 0%, 2nd attempt following testing at above stated S/N conditions 30% correct.
• Right CI only with competing background noise:
  Outcome: +10dB speech/noise condition - 100% correct
  0dB speech/noise condition - 20% correct

These findings indicate that the second implant provides some improvement in speech discrimination in a noisy condition. These findings did not show a robust difference between the monaural and binaural conditions, as expected. Mrs. P. indicated, however, she perceived more difficulty in the monaural condition. The difference in the scores in the binaural condition at 0dB S/N of the first attempt and second attempt is most interesting. This finding suggests that additional aural rehabilitation with the binaural CI's may provide additional speech discrimination in noisy situations.

Reported by:
Susie R., M.A., CCC-A
Audiologist

In layman's terms, this evaluation says that my comprehension in noise is 100% when the noise level is lower (or quieter) than the spoken words. When the level increases, my word comprehension goes down a little bit. But, when the same test was repeated after I had gone through 20-30 minutes of testing, there was a noticeable difference in comprehension after just a few rounds of "practice." This indicates that some A/V therapy with background noise would be beneficial. I cannot stress how important therapy is. . . and I'm a very stubborn person who doesn't think she needs help or thinks she can do it on her own. It is worth it and makes all the difference in the world.

However, Susie is returning to school to work on her doctorate so I do not have a therapist at this time and am waiting for my hearing & speech center to hire one. I will miss Susie but this is a great opportunity for her.

We are excited about this evaluation. Two years ago my word comprehension in noise was 0%!!!

Also, while I was in the booth being tested, I could hear every "little" sound I made, whether it was moving in my chair, crossing my legs, swallowing, turning my head, or even breathing. The booth is so sound proof that I felt like I had to hold my breath to minimize "extra noise" in order to be tested. Even silence seems to make a sound. When I told Susie that, she said that was a common complaint for normal hearing persons being tested.