Advanced Bionics Neptune Processor Monday, June 4, 2012

With the announcement of the waterproof, swimmable Neptune sound processor, I am beyond excited about this. I have been waiting years for a hearing aid that was able to withstand water, and strong enough for my hearing loss (and still waiting). And now we have a cochlear implant processor that can do it? AMAZING.

I have been following the news around the Neptune, and while I am not sure if I will qualify for an upgrade, as I already have the Harmony. The Neptune is is definitely a huge step forward in Cochlear Implant technology.

However, after thinking about it for awhile, the ability to hear in all environments slightly scares me. I’ve gone my entire life without swimming with hearing aids on (other than that unfortunate incident at the babysitter’s when I was five). I vaguely remember the feeling of “WOW! I CAN HEAR”, as I climbed out of the pool and my hearing aids died their quick, waterlogged electrical death.

Throughout my life, as a water baby through and through, logging countless hours in the pool as a child growing up in the intense heat of a Phoenix summer, and as a competitive swimmer for one of the nation’s top high school girl’s swim teams, I’ve made it by without hearing. In high school, one of the highlights of my life was a five-day whitewater rafting trip down the San Juan river. There were people who signed, so I wasn’t alone, but I still spent time on the water in silence. All these years, and I’ve made it through my aquatic life, without hearing sound.

Now to think…what will it sound like to be swimming, and hearing the noise of the water as you are surrounded by others? Of playing Marco Polo, and being able to participate with the hearing children at daycare? Of hearing the bird calls while floating down the San Juan in a ducky boat? Of not being afraid of being thrown in the pool with my hearing aids on. Taking kayaking lessons and having the full experience of hearing the teacher’s instructions on how to do a roll to get one upright. Of floating outside today in my pool, in silence, enjoying the blue sky and sunshine shining down on me.

There are pros and cons to the Neptune for my personal use. To hear while wet is a foreign concept to me.

I think today’s kids who have this chance to fully participate in the life aquatic are extremely lucky. Thank you, Advanced Bionics, for creating this swimmable processor.

Frustrations With Being Deaf And At Work Wednesday, July 25, 2007

Mixed reaction to the new walkies we have at work. It works with my headphones (I haven’t tried the DirectConnect cable yet, but I know it will work). The issue is that I need a program that will work with it, and still hear ambient noise.

Switching back and forth between programs is a great way to drain out the battery, plus there’s an 8-second delay when switching programs. It should be better with the harmony due to the built in t-coil and extended battery life.

My frustration spilled over into the rest of the day, because once again, I was reminded how much I’m in-between worlds.

It’s so frustrating to be left out of conversation while working. Everybody’s yapping away, and I have no clue what’s going on, but I just keep on working. Or they’re laughing at something funny on the walkie, but of course I don’t know what was said. I go through the same situation with my friends, even my family (except my mom) and I just Get. Tired. Of. It.

I’m tired of being deaf, but functioning “like” a hearing person. Everybody forgets that as much as I blend in, I still don’t get everything. Sometimes I wonder if it would be easier to either be completely hearing or completely deaf. And sometimes I feel like I’m being taken for granted because I work so hard at not only making it easier for myself, but for other people as well. And I don’t get the same in return.

I know it’s unrealistic to expect the world to bend to meet my needs, or that the cochlear implant will magically solve all of my problems. I was aware of this when I was going through the screening process, and it’s not even been a full year since I’ve been activated. Gotta take it one step at a time.

But yeah, I was crying when I got home and talking to my mom about my day, because she’s really the only one here at home who gets how difficult it is for me, and how frustrated I get. It’s the stupidest thing to cry about, but I couldn’t help it. I tried to explain it to one of my co’s, but it’s still hard to put it in a way that people without the background can understand.

Had my back-to-school physical on Tuesday after work, and it was the first time I had to turn down a procedure due to the CI. My doctor wanted to do an MRI on my knee, because I’ve been having off-and-on problems for the last year or so, as a result from when I broke my ankle/cracked my leg/sprained my knee 2 years ago. That was weird, because it’s the first time that’s happened where I had to speak up and say “I can’t do that.” All I had was the vision from the episode of House where the metal shot out of the body and into the MRI, breaking it, except it was the side of my head.

On The Virtues Of Batteries Thursday, June 14, 2007

Today, at work, my battery for my hearing aid was starting to die. I wasn’t hearing my coworkers or the guests in the store very well, and had a few near-collisions today. But what sucks more is that it leaves me out of conversations (even though I can follow along SOMEWHAT by lipreading, but it’s MUCH harder), and guests who don’t know I have a hearing loss, get frustrated with me, and go off in search of somebody else. It’s not too bad when I’m with my team lead, or other coworkers that I’m familiar with, so that’s a relief, but still.

In regards to the battery issue, my hearing aid is frustrating because the battery doesn’t give me a warning that it’s about to die (I suppose I could keep a calendar, and change it on a regular interval, but that’s beside the point). My old hearing aid used to make a click-click-click sound to let me know that the battery was dying.

With the cochlear implant, there’s no warning. It just dies. It’s clear cut and dried. It doesn’t cling onto its last gasping breath, nor does it trick my ear into thinking it can hear, but faintly. I know it’s dead, because I can’t hear anything, nor do I feel the stimulation in my head. It’s weird describing the process of the battery dying, but it’s like everything grinds to a halt, with one last pulse shooting through your head.

I prefer the fact that that the CI doesn’t mince with a dead battery, like the hearing aid does.  When it’s dead, it’s dead, and I’m not running around struggling to hear.

In terms of sound, I’m having trouble with sounds lately with the CI. Music is starting to be icky, sounds are starting to be unfamiliar or rough. I don’t know if it’s time for a remapping, since I haven’t had one since….winter quarter? Usually, you get one at 3 months, 6 months, and then 1 year. But as Megan and Mandy can attest, I’m very particular with my MAPs, refining it to the last detail.

I can’t wait till I can put my order in for the Harmony trade-in. ONE MORE MONTH. (and at the same time, I don’t want it to be July, because it means the summer’s half over!)

And that means July 10, will be my 1-year anniversary of getting the cochlear implant. I cannot believe that almost a year has gone by.

9-Month Test Results Monday, May 21, 2007

May 18, 2007

 

Overall, I’m rocking the CI with an 20-30 dB hearing loss. The little circles indicate that I can’t hear ANYTHING in my CI ear without the CI. It’s kinda scary not being able to hear anything, but only feel it when it gets to that loudness. Mandy circled it to indicate where I could first feel it. Being completely deaf with no response, scary scary scary. The most exciting news came with the test results, especially with the Early Speech Perception Test, which, in Mandy’s opinion, is the best indicator of how well the CI is working, because it tests similar words, with different vowels and consonants.

	Fall 11/13/2006 (~3 months post-activation)	Spring 05/18/2007 (~9 months post-activation)
CID Sentences List #8	30%	70%
Cochlear Screening Level D (Top Level)	31/36 (words) 8/10 (sentences)	33/36 (words) 9/10 (sentences)
Early Speech Perception Test Category #4 (Top Level)	5/12	11/12

Here’s the link to compare with the test results from 1-week post-activation. Huge change.

NOW CAN I PLEASE GET MY HARMONY??!?!?!?!?!?!?!?!?!?!?!

The Airport Announcements Sunday, December 3, 2006

Saturday, I flew back to school. I had a nearly 2.5 hour layover in Cleveland, Ohio. While waiting at the gate, I was approached by a deaf young man, John T., who also goes to school with me. Felt like I had seen him before, but we found out we had some mutual friends in common, and figured that’s how we probably met. Gotta love the deaf community.

Anyway, the gate I was at, had multiple planes at it (the kind where you have to walk down the stairs and out onto the tarmac). This lead to staggered boarding, as they were boarding the multiple cities at different times.

What I was so excited about was while I was engaged in a conversation in sign, I heard them saying word-for-word over the PA, “we are now boarding for Rochester, New York” and I said to my new friend, “that’s us!”

It was so weird to be able to be engaged in conversation in a noisy airport, and hear the announcement word for word in the background. And at the same time, absolutely THRILLING to be able to understand it with the cochlear implant.

Flying was much better this time around, but my ear still doesn’t like the pressure on it. But I didn’t feel dizzy/off-balance after getting off the plane, and going through the security pat-down was quick, compared to last time I flew out of Phoenix.

I forgot to mention in yesterday’s entry that Megan has been listening to Christina Aguilera way more than I have, and every time she hears her music, she thinks of me. I infect people with the Christina goodness!

My focus since I’ve been activated was to listen to a diversity of music, mostly my favorite songs, to retrain my brain to associate that pulse with that sound. Now that I’ve trained my ears with different music and it is starting to sound natural, I may start listening to Christina’s new stuff more.

I think I didn’t want to corrupt her beautiful voice with the CI until I could get a sense of normalcy with music.

Megan also said that music will be so much better with the Harmony, and both she and Dr. M can’t wait to see what I think of it as compared to the Auria, since I’m a music fanatic.

I also learned that I have to wait for a letter from Advanced Bionics, that will explain about how to get the Harmony, then I have to call and order it, then bring it in to program it. Just a month to two months to go!

A lot of people are getting implanted in January, because they want to get two Harmony processors. I’m glad I got implanted when I did, because I want to enjoy the Harmony when it’s turned on, now that I’m doing reasonably well with the Auria.

Ok, 6:35 am, and I should go do something productive before heading out to the Toy Fair and sushi with my friends! A new sound adventure awaits, and this time it’s one of my favorite things…TOYS!

Auria vs. Harmony Compatibility Saturday, November 18, 2006

Woke up this morning to an email from Advanced Bionics. This is the first official communication from them regarding the Harmony Processor (also known as the 120-channel processor).

The attachment looks a little wonky on my sidekick, but I copied and pasted as I saw it.

I’m so excited to see what’s going to happen with the Harmony, however, I’ve gotten comfortable with the Auria. I do have to keep in mind that as with any piece of technology, there will be a transition period, and this applies to the Harmony as well.

More later on being home and the different sounds. Life is good! 🙂

EDIT: the information has been removed, and will be added later.

Link To The Compatibility Chart

According to the Compatibility Chart, the Harmony will be compatible with all Auria accessories with the exception of the Auria Firefly (CI-5720), Auria AA Power-Pak (CI-7400), and the System Sensor (CI-5820)

According to the website, it says that using the above three items will:

• Using the Firefly and System Sensor with the HarmonyProcessor may result in false diagnostics.
• If the AA PowerPak is used to power the Harmony Processor, the processor’s LED Status Indicator may incorrectly indicate a low battery.
• In rare instances, using the AA PowerPak with the Harmony Processor may result in tripping the PowerPak’s fuse.

.

Going Home For The First Time Since August Wednesday, November 15, 2006

I am oh so VERY excited. Today I am going home for the first time since August 30th!

I’m actually at the airport right now, waiting to board my flight, and killing time by posting from my sidekick. Going through TSA was much easier this time, probably due to the high volume of deaf people that live and travel in this city.

Today, the weather couldn’t be any more perfect…51 degrees, bright blue skies, and sunny! I’m looking forward to the weather back home even more…79-82 degrees!

I finished the fall quarter with my last final this morning. This quarter was an interesting one for many reasons, but most importantly, I survived with a cochlear implant.

I’m so excited to go home because I cannot wait to hear what sounds there are back home. I want to know if I can hear the sounds of my dog, cats, and guinea pig. I know my guinea pig makes whistles, squeaks, wheeks, and a whole host of high-pitched noises, but I really can’t hear it unless he’s right next to my ear. Mom says that he calls when he’s hungry, wants attention, or hears the refrigerator open. And then I have my three cats, one which growls and hisses at everything (we don’t get along), the other likes to have “conversations” with you, and the third likes to quietly announce her presence when she jumps up on the bed, commanding your attention, otherwise she gets mad and jumps down. I want to hear toenails clicking on the tile, the clomp-clomp-thump of my three-legged cat as he walks around, the bells jingling on their collars, and the sound of my dog snoring, which always cracks up my mom.

I can’t wait to hear the sounds that my house makes. I want to hear the noises that happen in the neighborhood (especially the kids at the park, which the people on my street can hear).

It is going to be a mind-shock for me because I only got to experience being home for the first 2.5 weeks with the CI, and my brain didn’t understand what it was hearing. Now it’s almost 3.5 months later, and what is going to be different? Am I going to be catching on to what my mom says in conversation even better than I did with the hearing aid? I’m just bursting at the seams thinking about it.

I was talking to Kathy the other day at work about going home. She warned me that I need to be patient with my family, especially my mom. As a grandmother herself, she cannot imagine what it must be like for my mom, away from me while I’m experiencing all these new sounds. My mom has been there with me every step of the way, and she is very, very, very excited to see me and how I am doing with the CI.

Next week, I start up again at my old job (that I didn’t get to work at this summer, due to the complications after surgery), and I’m excited. It’s going to be stressful, with the holiday shopping, Black Friday, and cranky, stressed people. But it doesn’t bother me because I’m more interested in seeing how much the CI helps me in the work environment, working in customer service, and hearing the noises that make up a retail store. So here’s my new test!

Working on seeing Susan at least once or twice while I’m home and continuing with my listening therapy, plus seeing Dr. M for my 3 month checkup, and importing my current MAPs into Megan’s computer.

Ending on that note, that reminds me, I need to go buy a kumquat. 😀

Happy Autumn! Sunday, September 24, 2006

Yesterday was the first day of Fall. I’m not an Autumn person, preferring Spring and Summer. But I am excited for it this year because of the plethora of new sounds it will bring for me to go in search of.

Leaves falling off trees, crunching through the dead leaves on the ground, the sound of biting into crisp apples, the spooky sounds of Halloween, the squeals of kids going trick-or-treating, pumpkin carving, candles flickering inside, corn rustling as you go through a maze, I have no idea what else Fall sounds like and am eagerly curious.

Next weekend I am going apple picking for the first time ever, and participating in some of the Fall traditions that we don’t have back home, in the desert. I’m very excited.

My goal for the month of October is to watch as many scary movies as I can, and see if I get more scared watching it with the CI. I already discovered that the X-Files sounds much creepier and moody back in August, so now I wonder if the same holds for scary movies. I don’t get scared by scary movies, just psychological thrillers.

Friday, I didn’t get to work with Mandy, so I played with S&B while waiting for her to arrive due to being delayed. 😦 I’ve now done every category in the program, and established where I need to work with each category.

Then, I went with my friends out to Target. While walking to the car, and listening to my friends talk, the only thing I understood was Stef saying “I don’t know.” Then, at Target, while showing Everett the new Halloween Jones Soda flavors, I answered a question he asked me. He said to me “Do you realize you just answered my question without looking at me?”

So yeah, that was kinda cool. But I still feel like I don’t understand a lot of stuff clearly or without some sort of visual clue. Patience is the key.

While talking to my mom, she said that she “thinks that you’re being too hard on yourself, but why am I not surprised? I’m so proud of you for all the hard work you’re putting into it, and I know it’s not easy on top of everything else.”

I spent most of the weekend without the CI, just because I didn’t want to deal with it, and now I’ve been felled by the sickness that’s been going around like wildfire on PHouse/in class.

Music Is Life Friday, September 15, 2006

I have never been able to recognize music – classic tunes that everybody can recognize just by the notes or by humming.

Today, Mandy started me on the Sound&Beyond program, to test me with the vowels and consonants to establish a baseline. After I finished that, I was allowed to play with the program, and did musical instruments first, which I did okay with, 61.1%.

She then suggested I try out the melody portion, which I didn’t know about/did not do with Megan. It had songs like Ode to Joy, Amazing Grace, Twinkle Twinkle Little Star, Wedding March, Alphabet Song, This Old Man, Baa Baa Black Sheep, Happy Birthday, Rock-A-Bye Baby, and Beethoven’s 5th.

I expected to do poorly, because the only songs I can recognize are my favorite songs by major artists that I listen to frequently. The ones I’ve been listening to over the years, on repeat, starting in 6th grade. There is no way I have ever been able to sit down and be able to tell you what classic tune was being played at the moment.

Then, after I got my digital hearing aid, I was able to start figuring out what band it was, but not the song, unless it was a favorite song of mine.

Now with the CI, after today’s test, I was proven wrong….

I got a SEVENTY-FIVE PERCENT accuracy, out of 16 questions, on my first try, without any practice or training beforehand.

Some of the songs were played in different keys, and I think I picked up on it (need to verify with Mandy on Monday.) Mandy said that the sound was pretty quiet coming from the speakers, so that was another surprise for me. Then I surprised her/confused her when one song I was positive was the “ABC Song”, and started singing along with it. She had to listen to it closely, and it was actually “Twinkle Twinkle Little Star”, played in a different key.

I guess it goes to show that classical music training and playing the piano made a difference. I have a much better sense of timing and rhythm now. I also don’t have to bang the keys as hard in order to hear it, and my playing has improved (according to my mom). I learned to understand and appreciate the musical scale, chord progressions, style, tempo, harmony and melody.

Thank you Aunt Flossie, for giving me your old piano, and paying for my lessons, back in 1991. It really paid off. 15 years later, I’m still playing on that piano.

Thank you to my piano teacher, Deborah Preach, for being willing to teach a deaf kid how to play the piano, for 5 years of lessons, and having a lot of patience with me to learn and appreciate it.

Thank you to Mom and Dad, for taking me to piano lessons and waiting until I was done. For putting up with my playing, as terrible it was at times, and for my obsession with the chord combination of E-B and E-A, in middle C. Not to mention the times I tried to compose songs, and was obsessed with finding the perfect sound, just like Beethoven.

Thank you to my family, for all their encouragement and support, even when I played badly. For putting up with my constant love for music and indulging me, even when it was blasting throughout the house, often on repeat.

And look where I am today, first time ever listening to this, and I got 75%!

Maybe now I can finish teaching myself how to play the drums (thanks to Helen’s christmas present a few years ago, an electronic drum kit), then get started on learning how to play the saxophone, hammond b3 organ, harmonica, and experiment with vocoders/synthesizers. I’m not exceptionally skilled with guitar playing, and I didn’t like playing the violin when I was in 3rd grade.

More later about the last two days, as it’s Friday night, and I want time to myself to relax. I’ve been on the go all week with 7 am-1am days, and tomorrow’s my all-day photo shoot, plus there’s a picnic at the lake on Sunday with PHouse.

“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!