Harmony for C1 Upgrade

This will be a quick post to share my great experience with the Harmony for C1 upgrade. I'm just beginning this journey and so far it is going wonderfully!! My Harmony upgrade was programmed on November 9, 2010, last Tuesday. I know test results only show so much and are not exactly a realistic reflection of how we are actually hearing. However, I was not surprised by these test results so all I can say is my hearing is better than I ever dared to dream back in the dark days of hearing loss prior to getting my first CI.

Drum roll....

Harmony/C1 on Left - 96% on sentences, previous test was 93%
and 66% on words, previous test was 44% (in Feb 2009 I switched from SAS to MPS - that's a previous blog post if you are interested in reading about the big switch - and started seeing improvements after that for the first time in a few years and I believe this latest upgrade to the Harmony has boosted the improvements even more!) I never dreamed I could still see this kind of improvement in my left ear after 12 years of wearing a CI without having another surgery!

Harmony/90K on Right - 100% on sentences, previous test was 99%
and 88% on words, previous test was 76%

I'm on the hearing cloud nine! T-mics in both hears what could be better?

Thank you Advanced Bionics!!

The Quest for Words

Snooping around my computer tonight, I happened to find the paragraphs below, with the title above, that I wrote in 2005. Maybe I was thinking of writing a blog or trying to write an article for HLAA. I don’t really remember now. Obviously, I didn’t have a good ending so there was nowhere for the article to go. Not so now! Time to finish it, don’t you think?

Written in 2005
Have I spent my entire life looking for words? It feels like it. But, no, I had normal hearing for the first 21 years of my life. I didn’t know a thing about the ‘Quest for words’ early on. I had no idea that at 21 I would start a journey that would lead me to deafness and beyond. At this point in time, I can’t remember what it was like to not quest for words. I didn’t pay any attention back then, because I had no idea what it would be like to not be able to hear words. I took them for granted.

Every Christmas I search for Christmas music I can hear. So far the best place is church. All my hearing friends and co-workers talk about getting sick of hearing Christmas Carols every year. I long to hear them well enough to get sick of them! Every year I buy one or two CD’s hoping against hope that I will be able to hear the words. Where are the words? I hear the music quite well and enjoy it, but I’m greedy, I want the lyrics. So far I have not found the perfect Christmas album where I can hear the words.

Back to the present: Now, 2010
Words are back! Soft words, loud words, distinct words, radio words, TV words, movie words, phone words, conversational words, words are all around me and I’m so into hearing them! It’s been an exciting two years since going bilateral in 2008 with a CI in my right ear to complement the one in my left ear. Is it my brain that needs to hear with two ears or is it the newer CI technology in my right ear or maybe it is just that the right ear is somehow in better shape than the left ear? Whatever... All I know is that I can hear words again!

Can I hear someone speaking in another room? Bill is in the living room with the TV on. I am in the kitchen after dinner surveying the mess of left-over food and sink piled high with dishes. In a voice I hope is loud enough for him to hear, I say “You know what happens when we cook!” and Bill still in the living room, quickly catches my ‘hint’, replying “You put the food away and I’ll clean up”. I heard him as if I was standing next to him!

Can I hear in groups? We’re a group of six sitting in a semi circle on a deck overlooking a river. We’re eating dinner and I’m easily hearing and following what is said. All of a sudden a loud noise starts up. I have no idea what or where it is but it is annoying me and interfering with my listening. As I’m trying to listen to the talking, I catch a glimpse of a tractor between some trees on the other side of the river. I realize there is farm land across the river and behind the trees. A farmer has chosen this Monday night to do some farming. Once I located the sound, I was able to return my focus to hearing the conversation and it was again easier to hear. At some point, the farmer went away, but I didn’t notice, I had tuned it right out.

Can I hear lyrics on songs? Absolutely, amazingly, yes, yes, yes! We are in the living room chatting and all of a sudden I realize I’m hearing the lyrics of a song that I don’t remember hearing before. I start singing along just to show Bill that I hear them. He smiles, knowing that I’m showing off again.

Can I hear people when I’m not looking at them? I’m standing in the kitchen area of a houseboat. There’s a group of people milling around, talking and laughing. The Chinese exchange student that is with us on the houseboat trip steps up behind me and speaks into my right ear (T-Mic ear). She says “Can he be my security number two?” My first instinct is to turn around to look at her and ask her to repeat. But I pause instead. I’ve heard it clearly and realize she is talking about our oldest son. Our youngest had left the day before and he had been her security number one, protecting her from any perceived dangers on the trip. So I say, “You’d better ask him that”. The buzz of conversation and laughter around me continues.

Can I take notes in meetings? I could never do this before. I had to focus on what was said and not look away from the speaker to write. Recently, I was in a meeting with 5 other people. The other folks were doing most of the talking so I was just listening. I started writing the key points that would pertain to the part of the project I would be responsible for. At the end of the meeting, I realized I had taken notes so I typed them up and sent them out. Only two additional items were added later and both were not things I would be dealing with so that is why I didn’t write them down.

Can I hear people with a strong accent? I’m not sure, but I may be about to find out. Bill and I have decided to host an exchange student from South Korea. She should be a pretty good English speaker. Or she may not be. I’ll be finding out sometime around August 24th. I’m eager for this new hearing challenge!

Flight to California

The travel to California was long yesterday. I started with a 45 minute drive to the airport, stopping to drop off the pager at work. A 50 minute flight to Detroit which left later than it was supposed to and a run to the 5 hour connecting flight left me famished with no time to grab a bite. Of course the plane only had snack boxes left by the time the attendant reached seat 31F. Radical measures were called for and being sure it was 5 O’clock somewhere, I ordered wine with my snack box. After my makeshift meal, I pulled out my iPod, put the seat back a bit, put the headphones on and cranked it up. (People, I’m already deaf, don’t do that if you’re not!)

Awesome sound filled my right ear which has a T-Mic on the Harmony and makes using headphones very natural. The left takes a bit more work to hold the small earbud like headphone up to my microphone which sits slightly above and behind my ear. On the left I use a PSP processor with that older C1 cochlear implant. The music sounds so much better with two that I hold it up there until my arm starts to ache. About that time, I realize this experience might be worthy of a long over due blog post.

So here I am at 30,000 feet, writing on a mostly blank avocado ad page in O magazine so that the thoughts actually make it to the blog rather than being left up there in the ozone. Who would have guessed that inspiration would come to me up here when all I have is a magazine, book and iPod at my seat and the laptop is stowed someplace over head. I didn’t keep it with me as I sat down because it’s just plain too big for air craft use and the battery lasts about 2 minutes. Note to self: time to retire that 5 year old laptop and get a snazzy new lighter and faster one.

It’s very cool up here listening to Neil Diamond looking out the window at all the circles down below. I didn’t know they farmed in circles and I’m told later by a new CI friend from Massachusetts that they are irrigation circles. The circle makes me think of the UFO crop circle I just put on my Facebook Farmville farm game and thinking of Facebook is making me realize that it is probably why I haven’t updated my blog lately. I spend too much time playing Farmville and listening to the cows moo and the chickens cluck and all the other animal sounds. Have you played Bejeweled Blitz on Facebook? If not, I don’t recommend you start, it’s too addicting. But, I love it when it says “Excellent”! Maybe you have to be deaf to truly understand what an amazing thing it is to hear these sounds and words!

As Neil Diamond sings “I am I said, I am said I…” in my ear, I think “Yes, I am deaf and Yes, I hear”! Hearing is possible with these amazing devices called cochlear implants. Many thanks to Advanced Bionics for sticking with the research and development until music is enjoyable and speech is clear!

The views out the window are amazing on this plane ride. It is so clear and I have a constantly changing landscape out my window as I listen to music. Snow covered mountains and red canyons, brown desert areas and areas that are clearly covered with trees. Majestic! Now, I believe I will sign off since Carole King is singing “I feel the earth move...”. Ummm, lets not go there.

Two CI’s and a Woman on the Road

What a great hearing weekend I had in warm, sunny Michigan! With a couple of Hearing Loss Association meetings on the schedule, I was facing a good six hours in the car. Pre-CI, I found driving longer distances by myself extremely, excruciatingly boring. If you’re hard of hearing or deaf, you’ve been there. Once I received my first CI, my outlook on long drives improved a great deal because I could hear music again. In those early days, I stuck to tried and true CD’s of my old favorites from my hearing days. Since getting my second CI last July (2008), I have branched out to listen (and singing along!) to the music on the radio.

Returning from the Saturday meeting, I was driving along when my phone rang. I had put it on the LOUD ringer so I MIGHT hear it over the radio. No reading glasses on so I couldn’t see who was calling. A second’s hesitation… Will I be able to hear well enough to even know who it is? My mom is in the hospital… Better pick up. So I silenced the radio, grabbed the phone and answered. It was my brother calling to see if I had been to visit my mom yet. We carried on a conversation while I was driving along. (Michigan currently has no laws against this.) I had no trouble hearing him with the cell phone and the T-Mic on my Harmony! Awesome (or maybe not), now I have the same potential hearing people do - crashes due to cell phone distractions. I promise not to make a habit of cell phoning and driving!

Sunday was another meeting in another city, another hour and a half drive in another direction. I had the radio tuned to oldies and was enjoying the music very much. I felt like I was hearing more and more of the lyrics of each song.

All of a sudden I heard:

You are so beautiful to me
you are so beautiful to me
can’t you see
you’re everything I hoped for
you’re everything I need
you are so beautiful to me
Such joy and happiness you bring…

I found myself holding my hand out in front of me and imagining my Harmony in my palm as I sang this song to it. Sounds pretty corny! It WAS pretty early in the morning. I WAS slightly sleep/caffeine deprived. I DID need some entertainment. Mostly I was just feeling VERY appreciative of what I’d been hearing. It really does sum up how I feel about this sweet little device that lets me hear again! Just to reassure you, there was no traffic at all – think Timbuktu on Sunday morning. Everyone sane was sleeping or drinking their coffee with the Sunday news or maybe getting ready for church. This was way before the church traffic would start up.

All weekend, the lyrics just kept jumping out at me. Songs I had forgotten all about, like waves of memories washing over me. Crimson N Clover, Rock On, Goodbye Yellow Brick Rd… Oh, I just love it!

Then a song I had been trying to figure out for the longest time came on. I only heard the music and only noticed the song when I was alone so I couldn’t ask anyone what the song was. I tried once to hum it to my husband, but obviously my humming is somewhat lacking and he couldn’t help. The music would be so familiar to me but my brain was just not making any connections and my 'ears' couldn’t catch any of the lyrics.

Suddenly I heard:

Why can’t you see
what you’re doing to me
when you don’t believe a word I say?

My brain perked up and I started listening harder, turned the volume up a little, then I heard, “ …with Suspicious minds” . My eyes got big. I kept listening. Yes! Realization washed over me. This was the elusive song that had been toying with my 'ears' and brain for months when I heard it played on the radio. It’s mine now. Another one bites the dust…

Then the stop at McDonald’s for a coffee before the meeting. I pulled up to the ordering booth and heard ‘Would you like a double fudge brownie?’ I thought, ‘At this time in the morning? Are you crazy?’ but I very politely said ‘No thank you’ and went on with my order. I felt so empowered. I heard the question plain as day! This morning I did a repeat of this exact conversation while taking my husband in for his eye surgery. He said ‘That was a machine’. I asked 'What?' somewhat puzzled. He said: You just told the recording “No thank you”. We had a good laugh!

Hidden Losses

When the opportunity to join a newly forming Toastmasters chapter presented itself at work, I decided to give it a try. I had considered the organization in the past, but didn’t want to travel as far as the nearest chapter. This was perfect, I didn’t even have to go home, the meeting would be right after work. It’s been interesting and entertaining. I’m a little nervous about participating in some of the roles since most involve hearing and listening carefully. Both are items I need to practice!

Last weeks Toastmasters speech was given by a co-worker who happens to be polish. Her speech was about who we are and how we have/learn traits from our ancestors. She spoke about her grandmother who taught her to speak polish and to bake and about happy sharing times. She urged us all to think about who we are and where we came from.

I’m polish on my dad’s side. My earliest memories of my grandmother are nothing like my co-workers memories of hers. My grandmother was profoundly deaf by the time I was a child old enough to remember her. I remember a nice woman with a heavy polish accent who could not hear me when I tried to talk to her. I’d never thought about it before, but now I’m wondering how much I missed as a child, not because I had a hearing loss, but because my grandmother did! How much more fully would my grandmother have participated in my life if she had normal hearing?

To my knowledge she did not ever wear hearing aids. Could she not afford them? Did they amplify too much noise to be comfortable? I feel myself mourning the hidden loss of never really knowing my grandmother. She lived a long life, passing peacefully in her sleep at age ninety-eight. She must have lived the last thirty years or more of her life in near silence. I don’t have any details about when she started losing her hearing. Was it like mine, starting in her early twenties and slowly slipping away from her? Did she spend twenty years mourning her fading hearing and the lost connections to her family?

A quick search on the internet turned up the Deafness in Disguise web site. In the 1950’s and 1960’s it was all about hiding your hearing loss. Not much there to really make a person want to wear a hearing aid or admit to having a hearing loss. She didn’t strike me as a vain woman, but who knows what the impact of popular opinion would have been on her?

My own life will be much different from my grandmothers thanks to the wonderful cochlear implants that I now have. I will be able to stay connected to family and friends. My grand children (God willing that I have some someday!) will get to know their grandmother. There will be no legacy of hidden losses. We will be able to communicate and share in each others lives.

The Hearing Experiment

I promised an update and explanation of my ‘experiment’. It turns out to be rather anticlimactic. No mental anguish or hearing struggles to report. However, I once again proved to myself that I CAN learn new tricks!

At my recent mapping, I learned that there were 4 electrodes off in my older left side C1 cochlear implant. I do remember when two of those were turned off at my request because of poor sound quality out of that channel. There is no memory of the other two being turned off or of my being made aware of the fact that they were off. My audiologist explained how an electrode will automatically be turned off by the mapping software if the impedance is higher than normal and this is what was happening when I was mapped with SAS, a strategy that I have been using on the left side for the last ten years.

Interestingly enough, when mapped with MPS, those two electrodes stayed on. I had tried MPS a few years into my CI experience and did not feel I could make the switch from SAS to MPS. Lately however, I had been wondering if I should try again. My audiologist agreed that it would be worth a try and encouraged me to make the attempt. Doing so would give my 2 more electrodes and might result in better hearing with my left ear in the long run.

She suggested that I switch over on Friday after work. I tested the waters a bit prior to Friday and I didn’t like what I heard very much. By the time Friday came along, I was having second thoughts. It was a busy weekend ahead so I would be out and about, not just hanging around the house. I would have to risk not being able to hear at some events. Generally, I'm not willing to take any unnecessary risks when it comes to hearing. However, I was also feeling a need to do this. I finally decided I just had to go cold turkey and switch it over. So I took a deep breath and made the switch. Thirty minutes later, it wasn’t sounding too bad.

I went to my afternoon dentist appointment and was shocked at how loud the office was. Sitting in the dental chair, I realized this was my first visit since being bilateral. I could hear people in the other rooms and when she started cleaning my teeth, I could hear her scraping them! Wow, I had no idea that all these sounds were there. Saturday, I attended a bridal shower and then we went for dinner and a movie. By Sunday night I was feeling pretty good about MPS! It still sounded a bit strange, but was improving steadily.

Having the Harmony on my right ear made the difference. It gave me an ear to depend on while the other side adjusted to the new strategy. It’s now a 9 days after the switch and I know I will not be going back to SAS. I’ve switched back a few times to see what it sounded like and it sounds very harsh. A year ago, I would have said I was going to be using SAS forever! It will be interesting to see how that ear tests when I go back in August, but it sure feels like I am hearing even better now than I was two weeks ago.

Getting out of the comfort zone can be a good thing sometimes!

What I love about being bilateral and a 100% score

The following are some things I love about being bilateral:

• Sounds are louder, richer and fuller with both my implants on. With only one CI on, sound seems one dimensional and sort of flat. I hear better with one implant than the other but sound quality is best with both. Imagine watching a movie and then watching the same movie in 3D.


• When riding in the car, I hear equally well whether I am in the passenger seat or driver's seat. I can hear and understand people sitting in the back seat regardless of which front seat I am in. Prior to being bilateral, I always heard best as a passenger and even then had great difficulty understanding those sitting in the back.


• In large meeting rooms at work, I can hear people from both sides of the room. Prior to being bilateral, I would try to sit in the middle of a group but in large rooms I could still only hear those on my implanted side. If I tried to sit with my implanted side to all of them, then I was too far away to hear well. Now, I can place myself in the middle and I hear from both sides.


• At parties or in larger groups of people, I can hear the person standing next to me regardless of which side the person is standing on. I feel like I am relearning to focus on one ear at a time depending on which side has the sounds I want to hear. It's much easier to follow conversations in noisy situations.
  
• I've been able to attend company and department meetings without needing my FM since receiving my second implant. In church, I hear more of the prayer requests from people sitting around me and across the aisle.

You might wonder if it's difficult having two different strategies on the CI's. It was a bit odd at first, but maybe it would have sounded odd even with the same strategy since my right ear had not heard for close to ten years. During those ten years, I used the Advanced Bionics S-Series, then Platinum PSP /C1 cochlear implan on my left ear and no hearing aid on the right. After receiving the Harmony/90K in August, I was pleasantly surprised at how quickly my brain adapted to what it was hearing. Hungry for sound, it quickly started merging the two different signals to increase my overall understanding of sounds and speech.

Today I had my 6 month mapping for the Harmony/90K on my right ear and my annual mapping for the PSP/C1 on my left ear. Both ears scores were up. The results of my HINT sentence tests in quiet were awesome! Here they are:

Right Ear(Implanted with 90K/Harmony Aug 2008) Sentences 99%
Left Ear (Implanted with C1/PSP Dec 1998) Sentences 93%

Both together 100%!!!!!

So, does this mean I'm hearing perfectly, normally and everything?? No, of course it doesn't. But it does mean that I'm hearing the best I have in a long, long time!

My next post... Switching from SAS to MPS after ten years of CI listening. Can I do it? And why should I try?