The Bionic Sound Project

this girl’s journey to sound

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. 😀

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.

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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?

 

Who Designed Advanced Bionics’ Auria? Friday, November 10, 2006

Filed under: accessories,advanced bionics,information,links,media,research — Allison @ 10:56 am

I used to be an industrial design major, so I check out what’s happened in the world of design every now and then.  I’m interested in the medical products divison as I worked on a team project for a competition that had to do with healthcare.

IDEO is the industrial design company that everybody dreams of working for. It has been referenced through multiple fields of study throughout my college career, not just the design classes, but in my Organizational Behavior class as well.

So, while surfing the web, I was surprised to find out that they were responsible for the design of Advanced Bionics HiRes Auria.

Advanced Bionics HiRes Auria: Silver, Medical & Scientific Equipment

Contact: Scott Underwood, IDEO, 650.289.3409, scott@ideo.com

Credit: IDEO and Advanced Bionics

People with sensorineural hearing loss who have cochlear implants (electrodes surgically implanted in the coiled chamber of the inner ear) must use sound processing devices to hear. This system offers customizable covers that snap on and off to either mask or decorate the device, for both children and adults. Programs for different sound environments are accessed with the flip of a switch and the unit can be configured to work with various audio inputs, power supplies and microphones. The system also comes with ear hooks to make the fit more snug.

  • The device also has a visual confirmation that the processor is working with the implant.
  • There is a version specifically for children.

Learn more about IDEO, check out the following links:

IDEO’s official website

Wikipedia Entry

BusinessWeek Article on how IDEO is changing the way businesses innovate

 

My Favorite Martian, and the MAUDE database Sunday, November 5, 2006

Last night, I had my first true case of vertigo since surgery #2. The dizziness last night was similar to the dizziness that occured in the 9 days between surgeries #1 and #2.

I was sitting in the chair next to my computer, listening to music and flipping through CDs, when I felt the implant “seize up”. It was odd, as I hadn’t worn the CI all day, so I don’t know why it felt like there was stimulation. Then I felt something that I can only describe as a spark of pain that shot through my head. I looked up, but the room was spinning to the left, and I nearly fell out of the chair, but grabbed onto the desk just in time. Immediately after that, I felt like I was going to throw up, so I just laid down for an hour, to settle my stomach and nerves, and to try to get the implant to stop “twitching”. I felt pressure on the the right side of my head, specifically the sides of my forehead and lower jaw, as if somebody was pressing very hard with their finger into the bone, giving me a headache. It was scary to experience something I haven’t experienced in 3.5 months. I had hoped and thought that I would never have to experience that again with the CI, as that problem had been resolved with the 2nd surgery.

I called my mom to tell her what happened, and the first thing she does is to start laughing. Apparently, the whole incident reminded her of the 1960s TV show “My Favorite Martian”. She said that maybe my favorite martian was talking to me, and delivering electrical impulses. She thinks I probably got zapped by something, and to not worry about it. She apologized for laughing, but the way I was telling her about it, sure reminded her of an episode, and I was laughing at her, because it was so random. She told me to look up other shows from the 60s of that same nature such as My Favorite Martian, My Mother The Car, Mr. Ed, Car 54, Where Are You?, etc.. We are goofy like that.

Anyway, I was searching to see if similar events had happened to other CI users before, when I was reminded of the MAUDE database while searching.

The FDA has a database called the Manufacturer And User Facility Device Experience (MAUDE), in which they keep track of things that have gone wrong with medical devices. I stumbled upon this database back in July, when I was searching to find out more about what happened with my cochlear implant surgery. The database is only updated quarterly, and it was just updated so my case is now in there.

Adverse Event Report

ADVANCED BIONICS CORPORATION HIRES 90K COCHLEAR IMPLANT

Model Number CI-1400-01
Event Date 07/19/2006
Event Type Injury
Patient Outcome Required Intervention;
Event Description

A ct scan revealed that the electrode array was in the semicircular canals. On july 19, 2006, the patient had revision surgery to reposition the array. The device remains implanted.

Brand Name HIRES 90K
Type of Device COCHLEAR IMPLANT
Manufacturer (Section F)
ADVANCED BIONICS CORPORATION
12740 san fernando rd
sylmar CA 91342
Manufacturer (Section D)
ADVANCED BIONICS CORPORATION
12740 san fernando rd
sylmar CA 91342
Manufacturer Contact
joann rizzi, specialist
12740 san fernando road
sylmar , CA 91342
(661) 362 -4652
Device Event Key 735215
MDR Report Key 747434
Event Key 712299
Report Number 2029203-2006-00527
Device Sequence Number 1
Product Code MCM
Report Source Manufacturer
Source Type Health Professional
Reporter Occupation Audiologist
Type of Report Initial
Report Date 08/14/2006
1 Device Was Involved in the Event
1 Patient Was Involved in the Event
Date FDA Received 08/14/2006
Is This An Adverse Event Report? Yes
Is This A Product Problem Report? No
Device Operator Lay User/Patient
Device EXPIRATION Date 06/30/2006
Device MODEL Number CI-1400-01
Was Device Available For Evaluation? No
Is The Reporter A Health Professional? Yes
Was the Report Sent to FDA? No
Date Manufacturer Received 07/19/2006
Was Device Evaluated By Manufacturer? Device Not Returned To Manufacturer
Date Device Manufactured 06/01/2006
Is The Device Single Use? Yes
Is this a Reprocessed and Reused Single-Use Device? No
Is the Device an Implant? Yes
Is this an Explanted Device? Yes
Type of Device Usage Initial

Database last updated on September 29, 2006

And I couldn’t find an answer to my question, plus my friend Matt had come over to check on me to make sure I was okay because I was talking to him and Krista when it happened. I will have to wait till Monday when I see Mandy.

But I’ve got a new headache and some dizziness (not like last night’s) again tonight. I haven’t worn the CI since I took it off at 2 am Saturday morning. This is not fun.

 

The Weekend’s Sound Adventures Sunday, October 29, 2006

Before the CI party on Friday, Mandy and I were both “blah” and had no motivation to do any therapy. So we did the A-Z word list, and I swear, whoever writes those lists comes up with the most RANDOM things that I have ever heard of, just to have a word for that letter.

Then it was time for the CI party, which you can read about here! After that, I went to Target with Jen C. While in the car, we were listening to the radio play, and I understood “twenty thousand” on the radio! We were wandering around the store, playing with the different toys that made noise, and I just had a blast, especially in the Halloween section.

When we left Target, it was so windy, that we were having a hard time walking outside. I looked up just in time to see a seagull fly right smack into a light pole. It fell straight to the ground, wings outstretched. The other seagulls came back to check on him, but he was already up and hopping around. He then started to do this run/hop so he could fly away, but without much luck. I felt so bad for it, and wanted to help it, but Jen said there wasn’t anything that we could do. So we left after making sure it was okay. (Yes, I have a bleeding heart for saving animals that are hurt or abandoned.)

I’m not sure if I heard the seagull before it hit the pole, or if I just happened to see it. It would be interesting to know if the CI alerted me to it or not.

Saturday, Kyle was willing to go with me to the Haunted House at the very last minute. We got there, and we waited in line to go in. I could hear the differences in the laughter, and was hearing several things that I couldn’t hear with the hearing aid. The clarity of the sound was what really struck me as opposed to the HA. As for my review of the Haunted House, it was a bit overpriced, but it was fun and they had some really creative rooms that I enjoyed (especially the first room with the couch, the execution room, the flying corpse in the graveyard, the car with the horn, and the dark tunnel with all the flashing lights, distorting your vision/sound). The rattling morgue doors is what scared me, because they made such a racket, and that’s one fear that I’ve had when exploring abandoned places/seeing pictures of abandoned places.

Anyway, I absolutely LOVE haunted houses ever since I used to go with my dad on the weekends to school, where the dads would build the Haunted House for the Elementary School’s Halloween Party. I would get to play with my classmates, while they were at work, and sometimes we got to help out.

After that, Kyle and I went to a fraternity party that I had been invited to. I had such a blast meeting and talking to all of these people from different schools in the area. The one thing I noticed was that some people started fingerspelling their names to me. I don’t know if it was obvious that I had a hearing loss, or if they just figured it out because it was so loud and noisy in there. Either way, it was cool, and I have some new friends.

But one of the best things that happened during the party, was that I was talking to people, and struggling to understand them because it was so noisy with the chatter and the music playing, and I suddenly recognized the song, and it was Crazy Town’s “Butterfly”. I was SO excited, because that is one of my top favorite songs, and to recognize it at a house party is awesome!

Today, I worked on the lab with Jen A., and while sitting in the kitchen, I heard this weird noise. It sounded musical, but kept coming and going. Jen told me it was the wind howling outside, to the point where it was whistling. It bugged me that I could hear it with the HA, but not really with the CI. What’s up with that?

Mandy says I should get an earmold for the CI, because it would help it to stay on my head. This would have come in handy while working on the lab, because the CI kept falling off my ear while I was laying on the floor, taking pictures. Finally, I just took it off, because I couldn’t hold the camera steady AND keep my CI on.

 

National Public Radio Tuesday, October 17, 2006

2:54 pm: Omg! You were just on NPR! – my friend Casey

Talk Of The Nation 10/17/06Letters – Deaf Culture In America

It was a follow-up to last week’s story on As Deaf Culture Changes, So Do The Questions, in which they read comments from listeners on NPR.

If it hadn’t been for the lovely Casey who had been listening, I would have had no idea that my words on the air. Pretty sweet. Thank you!

 

Let’s Talk About Tolerance…Or Rather, The Lack Of It

Today, I had a really low tolerance for sound. People’s voices were driving me nuts. My tolerance level was probably not helped by the ADHD, as we’re adjusting medication doses for me.

Just sitting in class and listening to people talk, some voices were gravelly, and others were scratchy. It was the equivalent of what I would imagine to be nails scratching on a blackboard resonating through my head, and I just wanted to shut the sound out and have quiet.

This afternoon, I had my hardest therapy session to date, due to our activity that Mandy had today, and the new subject content. But first, I was glad I was able to vent my concerns and frustrations with the whole Gallaudet protest to Mandy, because she understands where I’m coming from. I know my friends and family mean well and want to understand, but I feel like they don’t understand why people are upset over it and the significance of the protest for the deaf/Deaf community.

Nor do they understand how I feel being an oral-deaf, mainstreamed kid, and the viewpoints/attitude of the Deaf community that have been stirred up by this recent debate about audism/deafism, and are being somewhat slowly translated over here to this campus, that it’s starting to become more visible of an issue now.

Basically, whatever the outcome of this is, it will have an effect on the intercultural relationships between people in the deaf community, and are best expressed in Allison Kaftan’s post The Worst Thing To Come Out Of This Mess. Fernandes may have brought it up, but the fact remains that that unspoken charge and hostility has and always has been an undercurrent within the community. She just put a name to it.

Anyway, therapy today, Mandy gave me clues to words in a crossword puzzle, but they were related to Halloween. These aren’t common phrases and sentences, so it was a bit of a struggle. That, and I think my brain was being cantankerous today.

Mandy noticed that with me, I am able to reproduce what the given sentence sounded like to me, but it doesn’t make sense. She said that it reminds her of the game Mad Gab.

Here’s an example of what a sentence to me sounds like to me with the CI, and without lipreading or any support.

Hears: A klute toothy puss hull.
Actual: A clue to the puzzle.

The key is in trying to make my brain put the sounds together to form words that make sense when put together.

In the morning, I had a headache while in the ESP lab during our class demo, and having to sit on the floor and look up at the interpreter. So I just stopped paying attention because the strain on my neck plus the lighting and low noise tolerance was too much. I spent some time just listening to my teacher talk, and picking up words here and there.

It’s still a world of garble and gibberish, but the fact I’m able to pick up a few words here and there, makes me pleased.