The Bionic Sound Project

this girl’s journey to sound

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.

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July 16 and 19th…Harmony, Car Accidents, and Surgeries Monday, July 23, 2007

July 16th – two readers/their family members from this site had their surgeries! I hope they went well (I know one of them did!)

I finally got to order my harmony as well…but it’s going to take a 2-week turnaround to get it. At the rate Advanced Bionics is going with this, I won’t get it in the mail and activated till I return to school in September (which will make Mandy happy!)

July 19th – I hear a car accident for the first time with the cochlear implant. And from a block away. I was hanging out on the far side of the parking lot after work, talking to my boss as we usually do after every shift, when we hear this noise (which I didn’t know at first, but due to the expression on her face, I quickly figured it out). It sounded like a loud firecracker, due to the “boom!” that I heard. Pam says that the noise we first heard was probably the screech of the brakes, and then we looked up in time to hear the crash (she saw stuff flying through the air, I didn’t).

I was the first one to respond to the accident scene while Pam called 911 on her cell. It makes me sick that not one person who witnessed the accident stopped to help. The woman was bleeding, and her head hit the windshield, shattering it. To make the situation more interesting, the woman who hit her, left the scene and didn’t return till like 7 minutes later. I heard her car before I saw it, and was thinking “holy cow, somebody’s car really needs to go to the shop”. It was making clunking/chugging noises (half of the hood was smashed in).

I’ve never heard a car accident, not even with the hearing aid. I heard it distinctly with the cochlear implant, but my hearing aid did not pick it up at all. But Thursday was a really bad day overall (my friends/coworkers know why, and I thank everybody for their support and love).

Finally, I love meeting people with cochlear implants at work. It’s always fun to run into guests who have a cochlear implant, and then find out we have the same doctor. What I like more is hearing their stories about their implant experiences, especially if they’ve gone bilateral. πŸ™‚

WE GET THE NEW WALKIES TOMORROW (TUESDAY) AT WORK! Must bring my various cables so I can plug it in directly into my cochlear implant and find out which one works the best…that’s going to be a fun experiment…I can’t wait! πŸ˜€ πŸ˜€ πŸ˜€ πŸ˜€ πŸ˜€

I finally uploaded a video clip of me playing the piano – “The Gypsy Baron” by Johann Strauss. I’m still working on finding my other audio clips of my piano playing…or rerecording them as a video, but I’m out of practice, my piano needs to be tuned, and the humidity makes one of the major keys stick.

 

Harmony Release Schedule Thursday, April 12, 2007

Filed under: 120-channel processor,advanced bionics — Allison @ 3:09 pm

The announcements for patients implanted prior to 2007 will be mailed out by Monday, April 16.

I’m bummed out, because I want my Harmony now (just like everybody else) but at least my hearing’s in good shape now (as compared to a few months ago) so now I can maximize the benefit of the Harmony.

From the email sent out:

1. Free Exchange of Auria Processors:

In accordance with our Harmony Processor Exchange Policy, we will exchange UNOPENED Auria processors
at no charge for patients who had an initial stimulation on or after January 3, 2006. The exchanges will be
carried out based on the following schedule, beginning with the patients who have the earliest initial stimulation
date:

2006 Initial Stimulation Date Free Exchange Notification and Processing Begins
January and February April 16, 2007
March and April May 16, 2007
May and June June 18, 2007
July and August July 16, 2007
September, October, August 16, 2007
November, and December

For patients who are under the Pediatric Warranty Extension Program, we will make replacements when they
schedule their ear-level processor fitting.

We will accelerate the Free Exchange Program in the event we have sufficient inventory. We will offer the Free
Exchange Program until the end of 2008.

2. Purchase Program (including full-price purchases and trade-ins):

Beginning April 16, 2007, Harmony Processors will also be available for all CII Bionic Ear and HiRes 90K patients for purchase or for paid trade-in (i.e., patients implanted since April 2001). Purchase and trade-in information, including Harmony’s features/benefits, insurance, and ordering information, can be found in Frequently Asked Questions (β€œFAQs”) at http://www.bionicear.com/harmony_exchange_purchase. A condensed version of the FAQs is included for your convenience.

Because there are a large number of users eligible for this Program and because we want to be able to accommodate all the calls that we anticipate, we are asking patients to contact our Harmony Team to begin processing their Harmony orders based on the following schedule:

CII Bionic Ear or HiRes 90K Users Year Implanted Purchase Request Processing Begins
2001 April 16, 2007
2002 April 23, 2007
2003 April 30, 2007
2004 May 7, 2007
2005 May 14, 2007
2006 May 21, 2007

We will offer the Paid Trade-In Program until the end of 2008.

 

Phonak MicroLink MLxS FM System Monday, January 22, 2007

Today’s goal was to get the FM System to work with the cochlear implant. This time, Catherine helped us fix it, and it worked on the first try!

I have the Phonak MicroLink MLxS FM system, along with the audio shoe (T-SP) for the Siemens Triano SP and the earhook (iConnect) for Advanced Bionics.

The boots/earhook look and feel humongous, so one of the issues is cosmetics versus being able to hear. I admit I’m turned off at this huge bulking monstrosity that’s perched on my ear, but after learning what it can do, it’s amazing and may be worth it.

I can hook it up to a stereo/television/computer/ipod and walk around my apartment, wireless up to 100 feet depending on which “cable” is used. The signal strength depends on which cable is used as the antenna is located in the cable. There’s also an option to use it with a cellphone, through BlueTooth, but I didn’t pay attention to that, as my hearing isn’t for telephone use.

Last night, I tried it out on my own at the apartment. It was after quiet hours, so I hooked it up to my computer, and I could hear the music from anywhere in the apartment, loud and clear. The best part was being able to do everyday activities, without having to worry about cords, dropping the iPOD, catching it on something. TOTAL FREEDOM. I could have used this last year, without having to freak out about my iPOD falling out of my pocket and into the tub of chemicals when working in the darkroom.

I can see how this technology can be manipulated…such as hooking it up to my iPOD, putting it in my backpack, and listening to music during really boring lectures (like I would ever do that). But the fact that the technology exists is what is so exciting to me. Nobody else knows that I’m listening to music but me.

I think my mom is going to be very excited about this. No more music blasting through the house when I’m at home. πŸ˜€

The only negative to the system that I can see so far, other than the cosmetics is that it cannot be used on an airplane while in flight. It operates on a radio frequency, and the booklet says “do not use on aero planes”. I also get static with it, but I’m not sure if it’s a microphone issue or a channel issue. The FM receiver can be changed to different channels, so if you’re in an area where wireless loops are available, you can change to that channel. But if you’re nearby, and have it set on that channel, you may not get the information from your area, due to interference.

 

How The Cochlear Implant Works With An Apple iPOD Friday, January 19, 2007

Ian and Aphrodite ask how the cochlear implant works with the iPOD. When I first heard about it, I wasn’t sure how it would work either, but here it is.

Auria with T-Mic earhook, DirectConnect earhook, and cable

 

 

Auria with DirectConnect earhook, attaching the cable

 

 

Auria with DirectConnect earhook, attached to cable

 

 

The whole setup, notice the silver middle – that is the evil static-causing connector.

 

 

Mandy figured out that you could remove it and still play it (I take no responsibility if you do the same) NO MORE STATIC! I’m not sure what the purpose of it is, but I think it has to do something with grounding it against electricity.

 

 

What it looks like when I wear it.

 

 

The only thing I don’t like about it is that I have to change the earhook back and forth whenever I want to listen to music or participate in conversation. The only reason why I have to switch back and forth is because I’ve got my Auria programmed to listen to music alone, because with the hearing aid, I hated hearing all the background noise, as I felt it overshadowed the music.

 

With my hearing aids, I could just pull off the boots, or switch back and forth between microphone (hearing both music and the environment), or just music alone.

 

I’m currently looking into other methods of getting the sound to my ears, such as the HATIS Epic. When the Harmony comes out, the built-in T-Coil will eliminate the whole changing-earhooks and the use of a Y-Split for stereo sound.

 

Some ask, why use the Y-Split? It’s needed because I have two different cables, one for my hearing aid, and one for the cochlear implant, to get stereo sound. (don’t have a picture yet as the cable for the hearing aid is missing at the moment!)

 

Be warned, this method with the HATIS only works if you have a telecoil built into your hearing aid and/or if your hearing aid is programmed for it (if needed). I have a Siemens Triano SP digital hearing aid with a telecoil. I would highly recommend, as with any assistive listening device (other than the cochlear implant) to try it out before you buy it (if you can).

 

Personally, I can’t wait for the Harmony, because I’m tired of having to change earhooks, and having two cables of different lengths and colors.

 

What Have I Gotten Myself Into? Thursday, January 18, 2007

Having one of those “dear god, what have I gotten myself into?” days.

Nothing like a good dose of frustration in many areas to end your day and push your emotions over the edge.

First part was great, as I had therapy with Mandy, then went off to the luncheon hosted by the Women’s Council.

Since we didn’t get to do therapy on Monday due to school being canceled because of the ice storm, I was happy to see Mandy today, even though I had talked to her over the weekend. She and Catherine reassured me that I looked fine, since I was all dressed up. They gave me the once-over and proclaimed me good to go for the luncheon. While this was going on, I found out the panel discussion is going to be either March 16th or March 30th, so I need to start thinking about what I want to say, and prepare myself for questions from the audience. Mandy had just gotten the Harmony release kit from Advanced Bionics, so it was cool rummaging through it and seeing the different items in it. It’s mostly audiologist tools, cds, and booklets. Nothing new to report, that we don’t already know. The release date is still TBA, according to the email.

After that was done, Mandy and I settled in to do word lists. I felt I wasn’t understanding words as well today, even though I could tell if the words were the same or different. I think it was because of my nervousness about the Women’s Council luncheon.

Sarah picked me up and we headed off. The two of us were invited by the members due to being honored with a scholarship. I’m grateful to the Women’s Council for selecting me as one of their scholarship recipients because it does help financially. What I didn’t expect was to stand up in front of the entire room, especially when they read the short bio of information that they collected about me. It’s not a situation one encounters often, so it was a bit nerve-wracking.

After that, there was a wonderful presentation by Bill Klingensmith, who did the Drive Project. I got some ideas for future projects from today’s presentation. Go check his website out, it’s excellent. I’m going to pick his brain one of these days, because I have more questions for him.

The biggest surprise was running into an old professor of mine and getting a hug from her. She’s one of my all-time favorite professors, and I haven’t seen her for a year and a half, so it was a real treat to see her there. I had been thinking about her the other day, and resolved to get back in touch with her. Unfortunately, it was at the end, and we were in a hurry to get back to campus, so I will have to meet with her soon.

I met several wonderful members of the Council, and I look forward to talking with some of them again. I had some good conversations with some of them about deafness and cochlear implants. Plus, the food was delicious, especially the Creme Brulee cheesecake we had. As Sarah put it “it was worth the wait”, since we both were planning to leave before one, but ended up staying for 40 more minutes.

The real trouble happened when I got back to campus an hour and 10 minutes late. Unable to find my class after searching the usual places in 7B, I sent my professor an email asking what was going on. Everybody was out shooting for the workshop, and we were meeting up again at four, but I didn’t know where. Finally, one of my classmates IMed me to tell me the details, so I was able to rejoin the group.

I had an impossible time following my teacher in the classroom we were in. His back was to us. It was dark in there. I couldn’t see my classmates. At that point, mostly out of sheer tiredness from the last few days, dry eyes, and frustration, I was biting back tears.

I’m just tired of and afraid to speak up and say “hey, I can’t understand most of what’s going on”, especially when there’s a good flow of conversation going on. I’m afraid to admit that I’m getting pretty lost lately. I understand him clearly if he stays put, there’s adequate lighting, and he’s the only one that’s speaking. But add in demonstrations, critiques, commentary, and it’s a mess.

I don’t want other people to have to make accomodations for me. I don’t want my deafness to be the first thing that they think of and see. My deafness is not what defines me. The same thing happens with my hearing friends. They forget that I’m deaf and treat me just like one of the group. But that itself is a negative because they forget and I miss out on coversation at the moment.

With the CI, one of my goals and hopes would be that it would allow me to meet hearing people on their own turf, instead of making it all about me and my needs. My teacher and I have tried different strategies, but none of them have stuck from day to day. The class does not revolve around me, especially since I am in a non-designated section for support.

I’ve been working on getting support for 2x a week, but since it wasn’t on the list of supported classes, I was told that I can’t request 4 hours a week of services. I understand that, as there are rules to be followed.

I know this is the risk that I took. I was aware of the consequences of making this decision. I just didn’t expect to hit me this hard, especially in the middle of the quarter. And I know part of it is my fault because I’m not being more aggressive in making sure I know what’s going on.

I didn’t want to fail. I still don’t. But here I am, feeling like that this whole experiment of being independent was a failure. I’m feeling more and more left out. It’s not easy for me to admit, since failure is not an option.

I just wasn’t ready. Or was I ever really ready in the first place?

 

Snow, More Mix-Ups, and Incoming Freshmen Saturday, December 9, 2006

Woke up to snow this morning…had about 3 inches on the ground, but by the time I got outside, it had been plowed, so I didn’t get to experiment with the sounds. Basically it sounds the same, but there’s more of a musical “squelch” as your boots press down on the packed snow.

Yesterday, I mentioned that when I had the hearing aids, I didn’t like the sound and feel of snow squishing on asphalt/concrete, nor did I like walking on it. It still holds true. What I can’t figure out is how much of it do I hear versus how much of it do I “feel”? It was too noisy outside with all the environmental noises plus my boots didn’t help.

While waiting for my lunch today, I had the realization that I was hearing more with the CI than with the HA. Maybe I need to change the battery. Maybe I’m just becoming more dependent on the CI for listening. Either way, it’s neat to see the dependence change from hearing aid to cochlear implant.

AB sent us a bill for $175.00 for the headpiece. This goes back to the screw-up that was supposed to be taken care of on September 29th. *sigh* We sent it back, per the instructions we got over the phone, and it’s still an issue.

I’ve been having rushing noises in my ear since I got home and laid down to rest on the futon. It only happens when I move from side to side, and feels/sounds like the tide coming in, growing louder and louder till it crashes against the shore. It’s a bit uncomfortable, but I’m used to it since I lived with it for one month after surgery. Just weird to have it back after not having it for awhile.

We had an open house today at school, and all the Special Interest Houses were there to meet with prospective freshmen and give tours of our floors. At one point, a tour group of deaf kids and their parents came in, and I was looking to see how many had cochlear implants (about 75% of the group, mostly Nucleus, which is about right, considering the ratio between CI companies here on campus).

I was at the table for Photo House, and out of all of them, ours was the only one that had a deaf person at it (me). It was nice being able to talk to the prospective students and sign with them, whereas the other houses didn’t. It’d be nice to have a bigger mix, but the world doesn’t work that way. There’s still a cultural divide between the deaf and hearing worlds, but it’s getting better here. Much better than when I first set foot on campus several years ago. As for our house, I’m the only deaf member, and there is one that is hard-of-hearing but doesn’t sign.

Several members are learning sign through the ASL class, which is pretty cool, and I’m proud of them for doing that. However, I feel conflicted between being me, which is speaking versus signing to them to help them learn. The reason is because I’m not good at signing and speaking at the same time, because my hands can’t keep up with my mouth and brain! That, and I find it odd to sign to a person who can understand me when I’m speaking and doesn’t know sign!