The Bionic Sound Project

this girl’s journey to sound

Playing The Piano Thursday, November 23, 2006

Tuesday I saw Susan for auditory therapy. She said that I had basically finished the book, as it goes up to Level D. When I last saw her in August, I was getting 60% on the sentence tests with the keyword in the sentence. 3 months later, I’m getting 70% on the sentence test without the keyword. Magic.

Driving back home from therapy, I was listening to the radio, and heard a song that I thought sounded like it would be one of Christina Aguilera’s. I looked down at the text playing on the dash, and it was “Hurt”. I haven’t listened to her new CD that much, especially in the last few months, because I’ve been all over the place with music, trying to get a wide exposure to different genres (minus Country). So it was cool to recognize it based on the music/vocals.

Wednesday night, I sat down at my piano, as we had just moved everything from the first floor back into the house on Tuesday. The tile and the painting is done, and the first floor doesn’t echo anymore. The CI really loved the echoes (not), especially when my dog is barking. Fingers poised, I excitedly anticipated what the piano was going to sound like, as I have been waiting for this for 3 months.

Pressed the keys for my favorite chords, the measure by how I rate a piano’s sound, and was pleased. Started playing some of the songs I knew and was in good shape.

It was when I took off the hearing aid to play the piano with just the CI, that I was shocked. I was just absolutely disappointed in how it sounded. The richness, the warmth, the emotion of the music didn’t come through at all. I could hear the thunk-thunk as the keys pressed down, or the hammer striking the tightly-wound wire inside the great belly of the beast.

There seemed to be a lag or even an echo when playing. I played several songs and my heart grew heavier by the moment, as there is no way that I could play the piano with just the CI by itself. I felt like it had gone through electronic filtering and I was only hearing bits and pieces of it. There were some notes that came through with the CI and others that didn’t. It felt like an electronic version of music.

Maybe it will resolve the more I play the piano, but even when I was first activated, music didn’t quite sound like this. I hope the Harmony will resolve this issue with playing the piano, because if it doesn’t, this may be the one thing that keeps me from ever going bilateral.

Tomorrow is Black Friday, and then we are having our small Thanksgiving dinner after I get home from work. Hope you all had a enjoyable Thanksgiving.

This year, I’m thankful for the Cochlear Implant, and for everybody who made it possible. I’m thankful to all the people who have been a part of this journey, and helped me to get where I am today, and continue to do so. That’s my thanks for this year.

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First Therapy Session with Mandy Friday, September 8, 2006

Today I had my first session with Mandy at 1 pm.

Catherine sat in for the first part of it, and we talked about my CI, and what I had done back home. It was kind of an “intake session” as I am new to their department as a CI user instead of a candidate. Catherine brought up somebody else who had a blog, Tina Childress, who has talked at the school, and is an audiologist who just became a bilateral CI user.

Catherine asked me if I was available on Tuesdays for the CI class, but I have scheduling conflicts and tried to work around it last spring, but no luck. I really wanted to take it, but hopefully they will offer it again Winter quarter. I think it would be highly beneficial for me, as I believe that the best way to make the most progress with the CI is to learn as much as you can about it, and to practice practice practice. You can’t just slap it onto your head and be done with it.

Then it was just Mandy and I, and we talked about my goals with the CI. What did I want to achieve with the CI? I was not sure, as I came into this meeting with an open mind, and no expectations and was going to just let them tell me what we were going to do. I learned back in August, after activation, that I need to relax and just go with flow, and have no expectations. One month later, they ask me what my expectations are, and I don’t have any!

My goals that I came up with today are to be able to use the phone, to make music sound like the HA if not better, to be able to follow conversations in group settings such as with my friends, to be independent of using other people to voice for me/tell me what’s going on.

Mandy then did some tests on me to establish my listening skills with the CI (same tests that Susan had done), and I breezed through all of them, scoring 100%. Her eyes were widening in amazement with each test that was done, and she finally said, after a few moments of silence “I am totally amazed. That has never happened before with others. I’m going to have to brag about you.”

I have trouble distinguishing vowel sounds (which I knew, as that’s where Susan and I had left off), and didn’t do as well as that. They were words that all started with a “B”, such as bed, bat, ball, bird, bee, book, boat, and so on.

So, Mandy now has a lot to do over the weekend to come up with a plan of therapy for me. She is also going to call Susan to get her listening therapy notes, and Megan to find out how she wants to approach the mapping for me. Mandy’s giving Megan control over the mapping sessions, since I’ve done several with her, and the last session I was told to leave the CI alone for awhile, and get used to the program I have. The reason for this is so that my brain can understand the stimulus for sound and adapt to it, instead of a changing stimulus for the same sound.

I also need to start working with/buy “Making The Connection”. Catherine already has the sound files loaded as a MP3 so I can upload them to my iPOD and use them for listening practice. Next week we will find out about the different software programs from AB and Nucleus, as Catherine wasn’t aware of needing a person to help with feedback with the program (unless I misunderstood Megan, as she prefers Nucleus’s program over AB).

I really need to buy a new iPOD, as it’s too small, and the earphone jack is loose, causing static when something is plugged in. That’s going to be one of my big items on my christmas wish list for this year (hint hint to my family).

My current baby is a 20GB 2nd-Gen one from Christmas 2002, that has been absolutely AMAZING, withstanding years of heavy use and abuse. I have 40+ gigabytes of music on my computer, and my iPOD does not hold everything that I want it to. And now there’s more stuff I got to add to my iPOD…some of my old music is going to have to get sacrificed to make room for listening therapy.

I still need to go find a Y-split so I can hook up my hearing aid and CI headphones. Mandy’s going to switch out my bilateral HA cord for a monaural cord, so I don’t have the other one dangling anymore, while I’m listening with my lone HA.

 

Day 5 and 6: The X-Files sounds much more scarier with a CI. Saturday, August 12, 2006

Friday I chose to spend the entire day in deafness because I had a massive headache. While making lunch, I was looking out the window and waiting for the microwave to beep finished. Distinctly I heard three beeps in my CI-ear and I turned and looked at the microwave and it was showing me that it had just ended.

Now I’m wondering if I’m actually hearing noises with the CI (without the processor on) or if it was just a coincidence. The other day Megan said it was probably phantom noises, when I was telling her about the voices that I was hearing. The whole thing is just freaky. It’s very possible that I just want to hear so badly, that I’m putting sounds into my own head.

Saturday was better, but now I’ve discovered that when I try to lay on my right side, I knock the magnet off of my head. I couldn’t win with the hearing aids either because that would cause feedback. Looks like I’m just not made for listening with my head on a pillow! I wonder how I will pull that off if I ever decide to go bilateral.

I’ve spent part of my day listening to the TV with my eyes closed. I can hear them speaking before the captions show up, which is frustrating. I also watched my favorite TV show, The X-Files, and noticed that it sounds much more scarier and moodier. I can hear all the little details that make the experience much more thrilling. Now I wonder if the Blair Witch Project would be scary to me, because I was the only one that was not scared when I saw it in high school. Everybody was clutching to me and could not understand why I was not scared, and it was probably because I could not hear the creepy background noises to be freaked out.

Susan emailed me today, and we are trying to figure out if I should meet with her first or see Megan first for mapping session #4 before we start speech therapy. I also heard from Mandy, my school audiologist, who has been reading my journal. HI MANDY!

In other news, this journal has been syndicated to blogger.com and I am trying to regain ownership of that account, because it is not correctly updated, and has my posts on it. Gonna work it out with them.

Here are some more links of interest
Earobics
this guy is similar to me
new ribbon CI?
Ears To You
Listening Demos of A CI (i don’t know what my depth is)

 

Saying goodbye (temporarily) to my new hearing aid! Thursday, May 18, 2006

Monday, I had to turn in the new hearing aids. I purchased one and it has been sent in to Siemens to get the body changed and stuff. The other one will wait (depending on if I get the CI or not) If I don’t, then I will purchase one over the summer.

I am sooooooooooooooooooo frustrated with my old ones, even though one has been repaired. I know that there are sounds I’m not hearing, that I have heard with the new hearing aids. I have been frustrated not being able to hear what I had been hearing with the new hearing aids.

Yes, I’m still scared of the CI, but I think it will be great. Now I’m debating whether to get one or two CIs. The issue isn’t going to be with hearing…I’m going to hear more sounds than before…the issue is going to be speech comprehension. There’s no guarantee, but all the audiologists think I will do well with it.

 

Update on Hearing Aids and Cochlear Implants Monday, April 3, 2006

I have new digital hearing aids on. I also got my old hearing aid back in from repair. My first thought when putting on my old fixed hearing aid after we put the old program back in…”HOLY S***!” I had no idea I was missing out on that much sound and was totally awestruck by the changes in listening. I still need a new one anyway, but who knows…I may hold out on getting a new hearing aid till after I get the cochlear implant, especially since I am so happy to have my old hearing aid back and really love those.

I finally got one major question answered for me today from Catherine C., which alleviated one of my major concerns and it has pretty much set the wheels in motion. I was concerned with the new 120-Channel implant from Advanced Bionics, to be released this summer/fall, but my understanding that it is the PROCESSOR, not the implant itself. If I decided to go ahead with Advanced Bionics, I would be implanted with the HiRes™ 90K Implant, and then would be getting the processor. Which one, I don’t know yet. I’m excited but scared at the same time. But my only concern is that you can’t try out different implants like you can try out different hearing aids.

So, after meeting with the ENT last Thursday, and talking to him about the differences in CIs and my candidacy, he thinks I would be a very excellent candidate for a CI. Based on my history with my hearing aids and the amount of training that I’ve had, plus my speech comprehension rate with hearing aids and without hearing aids is pretty excellent for a person with my degree of hearing loss, but still isn’t enough to succeed and understand without lipreading, and falls under the implant criteria. He thinks that if I was to get an implant, that I will succeed greatly with it. In fact, his exact words were “i think you will put on the implant and look back at digital hearing aids and wonder why you didn’t get it sooner”. He also thinks I should consider getting a bilateral implant. That’s not something that I am ready to commit to just yet. I want to start with one, and if I can’t hear as well, then oh well.

But Amanda also posted this link about a new cochlear implant that is 4 to 5 years away.

Anyways, Dr. S and I had decided on the Oticon Sumo DM, because he said they were most like the Widex P38s that I have, and if I really liked those, then I might like the Sumo DM. So I walked in there today to meet with Mandy D. She had the Sumos out and the Siemens Triano SP on the desk. She asked me which one I would like to try out, and I told her about my discussion with Dr. S, and that I wanted to start off with it. She suggested that the Triano SP would be a better match for me, based on my hearing loss and my auditory goals. She was there when I was talking to the ENT and was listening to me explain about my history and my goals with my hearing, and that’s when she was thinking about which hearing aids I should get when we met up again today.

So off we head to the audiology booth. First we reprogram the repaired Widex P38, to my joy. Then we went through the setup process for the Sumos. I could barely hear ANYTHING with them on. We tinkered with the program for it, and she finally had it pushed at max, and I still couldn’t hear much of anything with it. So that was the end of it. (Sorry Amanda, I guess my hearing loss is worse than yours, because I couldn’t hear the powerfulness of it, like you said it was.)

I put on the Trianos, and I could actually hear with them, even though they weren’t programmed. Of course, we still had to set it up, but the basic fact was that I could actually hear when I put them on. And there’s still PLENTY of room for adjustment with these hearing aids, so I’m happy about that.

My only complaint about these is that the audio boots seem rather awkward (i’m borrowing them so I can evaluate how it works with my iPod) and i can’t get them to snap in place without having to take off my hearing aid, snap the boot on, and then put it on. I don’t like that, because you can hear the “eeee” as it’s off my ear and I have to stick it back on my ear quickly, and then set the program to T. And right now, I’m having a hard time hearing with the left ear. I need to go back and get it adjusted. I took it off for the time being because I was really lacking in sound, and put my repaired one back on.

Anyways, Mandy was teasing me that she would save her gloating about the Trianos, and I said to her, “both you and my mom.” Both of them, especially my mom, were warning me to not get caught up in one hearing aid and to try out different ones. So yeah, you guys were right. Ha. :-p

The only thing is that now my eardrums are sore from adjusting to all the new sounds and stuff. I need to go back and fix the settings because I have a headache.

So, if I decide to get these, I need to decide what color I want to get. I am tempted to go with the translucent ones…the only thing is that she said they GLOW. I’m not sure how bright or what color they glow, but that sounds cool. I’m not sure I want to be a glow-in-the-dark girl, but hey, i’m all about individuality. I have no idea what the other colors are, but I really do not want a skin-tone one because after 20+ years of that color, I’m ready for something new. That’s the one I have right now, it’s skin-tone color.