The Bionic Sound Project

this girl’s journey to sound

Harmony Info and Hearing Things That Hearing People Don’t Notice Monday, December 4, 2006

Today was the first day of the quarter. I did errands and had a therapy session with Mandy. First I stopped to see Karen about scheduling speech therapy for this quarter, but to no avail. Mandy’s going to be playing speech therapist AND audiologist.

While working out my schedule in Karen’s office, she was typing away at the computer, eating a cracker, and I heard something which sounded like somebody hammering in the distance.

“Karen, do you hear that noise? It sounds like somebody hammering.”

“No, I don’t, I am eating crackers though. That may be what you’re hearing.”

“No, that’s not it, there definitely is a noise that sounds like faint hammering.”

So she stops everything she was doing, and listens for a few seconds.

“I still don’t hear anything.” and after she said that, she leaned down and picked up her bag that was pressing against the buttons of the tape recorder on the floor, making the “hammering” noises that I was hearing.

“There is absolutely NO way that you could have heard that.”

“Yeah, I did hear it. It sounds like ‘thnk-thnk-thnk-thnk’.”

“That is so incredible. It’s just unbelievable what you are hearing. I don’t even know how many decibels that was, but I couldn’t even hear it myself, and it took me a few seconds to figure out what it was! It’s a low, low, low frequency sound, almost silent, and to pick that up, wow!”

So, I went over to see Mandy since it was time for my appointment with her, and Karen told Mandy what happened with my sound discovery, so both of them looked pleased.

I’m going to be seeing Mandy 2x a week for auditory practice, and not seeing Karen for speech therapy, because of all the schedule problems from last quarter, and my final class schedule wasn’t definite until today, and everything’s booked. As a result, I’ve decided to fly solo this quarter without an interpreter for my major class. My teacher does know some sign, and has experience teaching all-deaf classes, and is willing to work with me in his class without an interpreter. It’s scary, but I’m up for the challenge. I just hope I don’t fail, because it is a 5-credit hour class out of 12 credits.

Mandy got back from the audiology conference that was in Buffalo this weekend, and true to her word, she showed me all the stuff she got at the conference, that had to do with the Harmony.

If I thought Megan and Dr. M were excited about the Harmony and what I am going to think of it, Mandy is way more excited about it than they are, and myself. She wants to get started with the Harmony…NOW. Hehe.

So far I’m the only active patient of hers that is going to be getting the Harmony (especially in January) and what I had to hear about the Harmony was pretty interesting.

Among some of the features of the Harmony:

– Built-in programmable LED light that will give system status for different things. It will be like the Firefly for the Auria, but most operations will be programmed to either light up for a short time, or permanently be on during operation.

– programming with the Harmony will be similar to programming with the Auria, but it will be one-click. It will convert the MAPs from HiRes 90 to HiRes 120 with a single click of the button. When I go in with the new Harmony, all it has to do is get my MAP from the Auria, and convert it with the click of the button.

– Users with the Platinum Sound Processor will be able to use the HiRes 120 processing strategy. This is a great way to determine if they like the strategy enough to upgrade and switch to the Harmony. With the Auria, there is no way to test out the HiRes 120 to see if you like it, except for getting the Harmony.

I’m really happy I got my cochlear implant in July, because I will automatically get to start with the Harmony and HiRes 120 processing immediately. I don’t have to wait several months to take advantage of the HiRes 120 Fidelity, as it will be much stronger and powerful than the Auria.

The patients who are getting implanted in January and beyond will not be able to take advantage of the Harmony’s benefits immediately. Apparently, the FDA is recommending that all new patients start off with the HiRes 90 processing/programming strategies (which is the Auria’s capabilities), then switch to the Harmony’s HiRes 120 capabilities 3 to 6 months after activation.

Now that I know what my Auria can do, and sound for the most part is normal, I’m ready to take on the Harmony and reach the next level with my hearing!

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Deaf Culture and Attitudes (and upcoming CI events) Thursday, November 2, 2006

today was just…WOW, for lack of a better word. had a long talk with Mary Karol this morning, and I felt so much better after it. I’ve learned so much about deafness and deaf culture, and the differences between big D, small d, and small-d-that-became-big-D, and the beliefs within those groups. I’d expand on it, but it’s so complicated, and cannot be summarized here. But basically the attitude comes from small-d-who-become-big-D, that causes the division within the community, but I think it comes from all sides.

However, she did have a good point, where people like me, will have a hard time, because we can slip easily in and out of both worlds. My deaf-institute friends, those that are big-D, have said the same thing as well in conversations with me. Being able to talk and be understood by hearing people, playing by hearing-culture rules. And then I’m able to slip into the deaf world, and sign (not that well as in pure-ASL, but I am good at understanding, not expressing). But the issue is jealousy, because not everybody has that opportunity or those skills. It makes sense when you think about it. I definitely wouldn’t trade who I am and my communication style for anything.

We also checked out the room for the holiday party, and it was the first time I’ve been in the new SDC and I was blown away by it. It’s still under construction, but should be finished by next week. I’m excited because the students can help with the planning/prep of the party and other events throughout the year because it is our organization, so I am going to help out with that.

didn’t meet with mandy/do sound&beyond this morning, cuz of audiological training this morning. I did have speech with Karen today… that “th” sound is giving me trouble now.

FRIDAY, DECEMBER 15, 2-4:30 PM, SDC-1300 – BE THERE OR BE SQUARE.
open to both CI/non-CI, deaf/hoh/hearing students, faculty, staff, and friends

 

well, that certainly wasn’t what I had in mind when I said I wanted to understand speech. Saturday, October 14, 2006

Well, that certainly wasn’t what I had in mind when I said I wanted to be able to understand speech with the CI. I most certainly didn’t expect to be able to understand that phrase 2 months after activation. Being able to understand “you’re a bleeping bleep” in the background at a party, even with the music playing and people talking, is amazing. Course, it is a phrase that I hear frequently, so it wouldn’t be that difficult, but still… Oy.


all of us (minus 2 people from the picture, and a few who couldn’t come)

My friends were amazed when I turned around from the kitchen where I was doing stuff and asked “who is the bleeping bleep?” (which wasn’t directed at me, but rather an “-ism” one of my friends uses for everybody) and realized that I understood that. There were a few more of those moments during the night, where I was asked something, and responded back correctly, either with an answer or doing what was asked, all without looking at them or lipreading.

The whole concept of being able to understand without actively listening, is very strange to me. But I get rewarded with those rare moments that I understand words or sentences, and reaffirm my faith in the CI.

Showed up on Friday, only to find out from Don that Mandy is sick so no therapy. She didn’t look like she felt well on Thursday, so I hope she feels better soon because it’s not fun to be sick, and because it’s always awesome to see her. And she has a surprise that she is working on for our sessions, so I’m eager to see what she has come up with.

Had speech therapy with Karen on Thursday, and she had a new activity for me. She will ask a question, and I have to answer it, and then have a back-and-forth conversation with her. This allows me to practice listening, and to work on my speech rate, and using good speech while talking. The majority of my errors come not from when I’m reading the word/doing drills, but rather from being spontaneous. This is going to be a lot of fun, I’m excited.

She also forwarded me an email with the listening therapy websites online, and it is comprehensive! I need to get internet at home, so I can use them on my computer, because the Macs at school don’t seem to like the files, as I discovered on Thursday.

At 2 pm, National Public Radio did something I’ve never seen before. They had live captioning on the web for a story that was being talked about live on the radio. The subject matter was the October 12, 2006 – The Evolving Debate Over Cochlear Implants as well as Deaf Culture in America: As Culture Evolves, The Questions Change, and they encouraged deaf people to call in. They were cool working with the intepreters and relay operators, even though radio is a fast-talking medium, attempting to squeeze many words into a short amount of time. Now if some people in the world took the lead of NPR on this broadcast, life would be good.

Don’t forget to read A sampling of comments from the audience members. Be sure to read about the one titled “Social and Emotional Impact of Oralism”, as it is a topic I am very familiar with, and strongly support.

I would have called in/listened during those shows, but I was at work.

 

Friday, September 29, 2006

Mandy called AB for me again on Thursday. We finally got ahold of Kathy, and she insisted that either I or my mom had called to place an order, and that we had given them a credit card, and that the last 4 digits were 3313. So I’m positive that it was a mix-up on their part, and supposed to go to another family with the same last name as mine.

Mom just has to send it back to AB, unopened, with a note “Did not order. Wrong shipment.” So that’s been taken care of. But what a lot of hassle, especially for an order that you did not place! I feel bad for the family that is waiting for the headpiece to arrive in the mail, and know it would be awful to go without a working CI for any length of time. I hope they figure it out soon, so that they can get back on the road to listening.

Yesterday, I had speech with Karen. I’m doing well, but still struggling with producing some sounds correctly, especially “Z”. Read Karen my poem for practice, so I can read it in class on Monday. She loved it. So hopefully I will be able to pull it off on Monday, to read it the way I want to. But I’m really liking this approach to therapy that Karen is taking. She has a list of key words that I have trouble with, and using that key word, she asks me a question. I have to answer the question using the key word, and it still allows me to express myself, instead of rote repetition. Spontaneity is good, as it’s most like conversational speech!

Walking to Mandy’s office, I ran into Catherine, and I chatted with her for a few minutes. We talked about the CI class and when they were going to offer it next quarter, and to see if it would be possible to switch it around. She also asked me about how it was sounding, and some of my observations and suggestions for tweaking. Then we discussed the 120-Channel Processor, and that an AB Clinical Specialist was planning on coming at the end of December/early 2007. The training is scheduled to take place close to the release date, so based on the online chatter, I’m thinking that it will be released in January. Anyways, I volunteered to be their guinea pig if they needed one. I really cannot wait to see what will happen with the Harmony, but am focused on maximizing as much as I can with the Auria, because once I get the Harmony, the Auria becomes my backup processor. It’s just fun to dream about what might happen with the Harmony.

Then I met with Mandy for listening practice, and we tried out the HATIS system for the cell phones. It works, but I don’t like having to attach the headset to the phone, and then put it behind my ear. I want instantaneous access to the phone. There’s another version that is made for listening to music, and doesn’t require all these specialized wires for the HA versus the CI. That might be something to look into, as it works with the T-Coil function on both devices.

We did some practice exercises today, and a page from “Nucleus Hear We Go!”. She picked out TV, but it was hard, because I’m behind with current events, since I tend to watch my favorite shows on DVD, only watching hit shows like House and Project Runway these days. So we included famous people and movies. I was offended when she made a comment about my beloved Christina Aguilera, but it’s all cool (since I’m used to hearing it from my friends). (but you started it, by baiting me to put it here, so here it is! meanie. :-P).

But now I will be working with “Making The Connection” on my own at home. Mandy’s got a few more programs she wants to try out with me, but she’s going to show me later. It’s more difficult for her, because a lot of stuff that she would do with newly-implanted recipicents is too easy for me. Or she will start to do something, and it’s not challenging enough. I saw the stack of papers/books she has for me alone for listening, and my eyes bugged out, and I said “you’re kidding me, right?”.

In addition to all the listening practice, she also corrects me when I say something wrong, and helps me to say it right. Today, she kept catching the “z” sound, and had me try to say it. The sound is supposed to start in the throat, and come out through the mouth. She wanted me to put my hand on her throat/in front of her mouth so I could feel the airflow, but I didn’t want to. It’s one thing that I have never liked about speech therapy, is being hands-on/accidentally being spit on/bad breath, so I always used to try and avoid those situations at all costs.

So, when I say “z”, it comes out through my nose. So, I pinched my nose shut, and it works….kind of. Boy, that sound is hard! But hopefully I will get it with more practice and help from Mandy and Karen.

Anyway, I cannot wait for tomorrow, so I can embark on a sound adventure trip with my friends!

 

Use Your Head Sunday, September 17, 2006

While at the lake today, I learned two very important things regarding the CI.

1. Don’t do a header with a soccer ball.
2. Running to catch a frisbee is difficult, especially if you dive for it.

The CI bounces around on the ear or falls off. I had to grab it (yay for awesome reflexes) before it hit the ground.

I need a way to get it to stay put when I’m running around, and still be able to hear. This is going to be important, because I am going to be playing in the IM Soccer league with PHouse, if we get approved. It will be difficult to run up and down the field with an all-hearing team, and only have one hearing aid, and not be able to hear them if they are calling to me.

Mandy called AB on Friday to ask them about replacing the magnet for the headpiece, by adding an extra or stronger magnet.

It’s difficult for me to wear the headpiece under my hair, cuz I tend to tuck my hair behind my ears a lot, and when I do, it knocks the headpiece off. I can’t put it on the outside of my hair because it is thick, and also fine, which makes it slippery.

The AB rep said to not put another magnet on (so I can wear it over my hair), because it would cause irritation and not provide a good “lock” (connection between the headpiece and the implant), and they don’t recommend that route. Instead, I should wear my hair up, cut it short, or shave a little spot where the headpiece goes.(!!!)

I really need to become more adept with styling my hair, and am at a loss of what to do with it right now. Even though I have the XX chromosome, I’m not one of those girls that played with makeup, hair, and clothes growing up. I was very much a tomboy, preferring to get dirty than to be girly.

Last week, I had to do speech testing with Karen to establish a baseline for improvement. The last time I had speech therapy was about 2 years ago. She gave me my results on Thursday, and discussed what I need to work on.

Results From Speech Testing 9/14

Fisher-Logemann Test (single words)
% Consonant Error = 24/67 (36%)
% Vowel Error = 0/16 (0%)
% Total Error = 24/83 (29%)

Clarke Sentences
98% = 4.7 Intelligibility Rating
(1 being lowest, 5 being highest)

Rainbow Passage
Sample of narrative speech reflected more errors than read speech, and errors were:

er (first), /s/ (mostly in the medial and final positions, and in blends)
st, nd, ns, ks
sh, ch

Words that contain nasal sounds also tend to sound too nasal. Carrying the nasality over to adjacent sounds.

Strengths
Overall very good intelligibility
Communicates ideas and opinions clearly
Excellent lipreading
Highly motivated
Highly intelligent

Skill Areas To Work On
Improve selected consonants and blends
Encourage better self-monitoring and self-correction at the conversational level
Practice a slower speaking rate
Monitor and encourage relaxed communication interactions.

The theory is that with the CI, it will be easier for speech because you can actually hear the speech sounds, and as you get more familiar with speech sounds, you will be able to incorporate them into your own speech, and correct yourself.

 

“You turned it up like WOAH!” Thursday, September 14, 2006

“You turned it up like WOAH!” – Mandy

I had my first mapping at school today. This morning, Mandy and I were joined by Catherine and Don (the other audiologists that I have worked with), who wanted to sit in on the mapping session. The majority of the CI students have Cochlear, and AB makes up about less than 1/4 of the population here (unconfirmed for 2006-2007), so we had to spend a bit of time getting re-familiar with the program.

The best part of the mapping session today…my brain is definitely ready to utilize the CI!

Mandy, Catherine, and Don were deciding how to best program me, based on my reports that I’ve been making over the last three weeks, and Megan’s reports/programs. The other part that they were curious about is why I had the lower frequencies turned up high, but not the upper frequencies. Speech clarity could be an issue because the upper frequencies were missing/not as strong as the lower frequencies, so they wanted to see what would happen with my brain, if we adjusted it.

So Mandy did speech bursts testing, which is the same as the “beep test” that Megan used to do, except it fired multiple electrodes at once. It was at this juncture that we realized that what I was hearing was soft to moderately soft. This explains why speech has started to sound more distorted over the last week, resulting in frustration for me.

I didn’t have to adjust the lower frequencies as much, but I really adjusted the upper frequencies, and I am pleased to report that speech is starting to sound AMAZING with the CI, in the few short hours that I’ve been programmed. It is also starting to balance out the hearing aid now, which is a great relief to me, because I was worried that I was going to have to go without the HA, because I should be listening with the CI, not the HA.

Don/Catherine both told me that one other person has mentioned the radio playing in their head. Apparently in the past, CIs used to have RF interference, but it shouldn’t be happening today with the newer models. And feeling like that I’m hearing in my non-implanted ear when I don’t wear my HA, has also happened to a few other people. So that’s some burning questions answered that I was very curious about! I was warned that these new programs may drain the battery even faster, so I need to continue with the battery log.

I hung out in the common area while they had their department meeting, because I had speech therapy 2 hours later, and tried to do homework, but was filling out paperwork instead. After their meeting, Mandy chatted with me while she ate her lunch. It was fun getting to talk about non-audiology related stuff. She’s so cool.

My exciting news from Monday…I was asked to be in a film that the school is making, and part of it has to do with Cochlear Implants and the shoot is tomorrow. Mandy just told me exactly what it’s going to be used for, and it wasn’t originally what we thought it was. Eeek. *nervous* We’re both talking about how we have to look extra-pretty tomorrow, because we are GIRLS who like to look good!

 

Surpassing the 2-month mark, 1st day of Listening Therapy Monday, September 11, 2006

Yesterday marked the 2-month point since I got implanted. Some things have changed, and some things feel the same. I still feel as deaf as before, even though I’m hearing more sounds.

Felt dizzy for part of the morning, which progressed into a headache, (but after an hour of talking about quantum theory, blackbodies, and theories of waves/light at 8 am, you would get one too), which resulted in the suppression of the gag reflex, not fun.

I keep forgetting that I can’t move fast, and simple things like taking 3 flights of stairs, seeing things move rapidly, or going over a speed bump can trigger bouts of dizziness. Maybe it is a sign that I need to slow down once and for all.

As for my big lecture class, Mandy suggested getting an FM system (oh how times have changed from my stubborn resistance of the elementary school years). After last week’s “noisy” class, I’m more open to the concept. She did some research into the auditorium that I have class in, and unfortunately, it isn’t wired for it (the others on campus are), so I have to meet with the Dean of my college to get that started (it’s under their responsibility). I hate asking my teacher to wear another mic, since she already is wearing one for the hearing kids, or for anything else.

Mandy started actual therapy today, and boy was it different than testing, which was easy for me. We did categories of words in ABC order, and some of those animals we had never heard of before, such as Ibix, Numbat, Quokka, and we were like “WHAT?!?!?!”. Several I had trouble with because speech has been sounding funny to me lately, especially over the weekend. I was getting really frustrated on some of the sentences, because it sounded nothing like what I thought it would, or only got parts of it. And when you start having trouble with basic words that were easy before, that’s not good.

Mandy’s also started coming down on my speech errors, so one word I repeated wrong today didn’t come out the way it was supposed to, and sounded like a gross slang word that rhymes with Chart. Oy. At least she’s awesome about it lol. I know I get lazy with speech sometimes, I can say it, but I don’t always do so, resulting in embarrassing situations, or situations that were made worse (a.k.a. “what a big plane” incident).

By the end of the week, I will have a new/adjusted MAP. Catherine’s going to sit in for the first session. My homework (from what Megan told Mandy about our past sessions) is that I need to figure out which of the three I like the best and why, and come prepared with information. Each one has its own positives and negatives, so it’s hard for me to make comparisons, especially since it seems to change over time!

I’ve been asked to be involved in an upcoming project, but mum’s the word till I find out more/it actually happens.

Poetry class, my teacher was pleased with my poem. I actually ended up having to read both poems, and explain why I wrote/picked the one that I did. I scrapped the first one (which was a modification of a poem pre-CI), and kept the brand new second one (post-CI), and she wanted to know why. I tried my best to explain briefly that I cannot write poetry based on sound that I knew with my hearing aid, versus sound that I now hear with my CI. It’s a whole new dynamic, that allows greater material for creativity. Why write about the exterior shell, when there’s a whole new smorgasbord of details? I find it hard to explain how it’s different, but she understood immediately.

I was in the darkroom tonight developing with Sam, and I could hear the ratchet-ratchet as she wound her film onto the developing roll. I could hear the different noises that the tools made, clattering against the counter, all in total darkness and not having any visual clues. I felt like I was watching her work, but only through my hearing.

While she developed our film, I helped another classmate, Jen A., by modeling for her project. Matt W. saw us and came over to say hi. The three of us sprawled out in the grass, soaking up the last of the sunshine, as we discussed the upcoming projects for the week for class. Conversation turned to CIs, and since I’ve been back to school, I’ve loved the reactions that people have (especially hearing people with no prior knowledge about CIs).

But that’s a story for another day.