The Bionic Sound Project

this girl’s journey to sound

Flying With The CI Wednesday, August 30, 2006

Filed under: flying,observations,post-activation,post-surgical,sound discovery — Allison @ 11:59 pm

Today I flew back to school all the way across the country. It was my first time going through airport security and flying with the CI. It wasn’t that much different than flying with the hearing aids, except that the TSA wanted me to have a pat-down and a bag search instead of going through the metal detector.

It took a bit longer because a female TSA agent had to be located, and then she had to pat me down, which felt really odd, especially when they pat around the personal parts.

Flying was another non-event in itself. I could hear the voices of pilot/flight attendants over the announcements. I could also hear passenger’s voices even when the engines were going and we were in the air. I thought it would be much more difficult for the CI to distinguish between speech and the engine noise, but I was proven wrong.

I could still hear and understand sound, even though my HA-ear was all plugged up from the altitude changes. It was odd, when my left ear was all plugged up, but my right ear didn’t feel plugged up at all. This was a great experiment in the differences between a CI and a HA in an airplane, and the CI far surpasses what one can hear with the HA.

(backposted from a few days later)

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The final session for summer 2006 – saying goodbye Tuesday, August 29, 2006

Today it really hits me that I’m leaving and no longer working with Megan, Kim, or Susan (for a long time). I had my last therapy session with Susan, until Nov/Dec., if not till summer 2007. And I was just starting to get comfortable and settled in too.

Susan said she was going to be sure to tell Karen to pick on me about Mango. I already beat Susan to it, by telling Mandy and Karen to beware of certain people suggesting mango for a therapy word!

Today, we did the usual round of sentences and words where I looked at the paper, and told her which one it was. Doing pretty well with it, but it’s not real life. Then a new test for me! Category/Keyword, open set. We did entertainment for the category, and several different keywords (whatever was given related to entertainment (i.e. emmys – “did you watch the emmys on sunday night?”)). She would tell me that she was going to say a sentence related to entertainment, using one keyword. I had to repeat it back what I heard her say and where it was in the sentence. I was getting 60% for my first time, and able to repeat it back. The brain is a funny thing…you hear something, and you know it’s not right, so your language system kicks in to make it right. It’s amazing.

Pretty good for 3 weeks. But I still have a long way to go, and for the other test, have trouble differentiating between similar sounding words, and if they sound the same or are different. That was my reality check for the week, because I did badly on that one.

So yeah, Allison, you’re doing amazing with the CI for three weeks’ time, but this is just the beginning of a long hard road ahead. As Coach Seaquist used to say…“keep on swimming.”

Next Stop On The Tour: Mandy, Karen, and a whole new world of sounds, people and experiences. I fly out tomorrow. Oh boyee.

 

Mango…The Word That Just Won’t Die Monday, August 28, 2006

The word that just won’t die…MANGO.

Megan said she was going to send me a care package of mangoes to me at school. When I come back in a few months, I’m bringing her a kumquat just because. Maybe an onion. But it better not be a combo of mango and fennel. It’s a good thing we don’t have our own cooking show on the Food Network.

Had #7 today…spent close to 4 hours in there. First I had to see Dr. M. for my checkup. The blood is gone from my middle ear and my eardrum is not purple anymore, but it’s still swollen. He had Megan do a test to see if I have any residual hearing, and I don’t, but it’s probably still too soon to tell.

After that, instead of being in the auditory room, Megan set up in the same exam room that I was in the day I got activated. She had both computers, the programming one, and the Sound and Beyond one. She would tinker with my CI while I was playing with the program and listening to words, telling her what sounded funny as I was going through the exercises, but the picture of the rabbit in the food category is a terrible picture! I was doing pretty well, scoring between 85 to 96 percent with the CI alone. However, I started having trouble with some familiar words, such as cat. And while comparing programs, she would say “how does this sound? what time is it? mango.” just to rub it in because I hate that word!

At one point today, Megan was on a mission to find out just how much I am hearing with my CI, and help me see that the CI is working better than the HA and I’m hearing way more than I think I am.

88% with CI alone.
96% with CI and HA.
80 or 84% with HA alone.

Course, I was cheating because I could not hear the laptop very well with the HA, and had my head right next to the keyboard at intervals so I could hear it, until Megan made me sit up and stay put. :-p

The other thing that has been an issue with the CI is that it sounds good at first, and after a little while, it starts to sound bad (even while I’m still hooked up to the computer). Over a few days, I go from being able to hear voices within a room, to only being able to hear within one to two feet around me. I always thought it was because it was because my neuro-adaptation was fast, but that might not be the case due to what AB said. Kim said they had a patient like that, but that was a long time ago. We also experimented with the pulse width, and at times it would sound awesome, almost like the hearing aid, but there would be a bit of an echo. It’s very frustrating tinkering with the CI, because when one thing sounds good, another thing sounds bad. And there are times I don’t know how to explain it. Sometimes I feel like I’m hearing in my left ear as well, because the sound from the CI seems to “translate” to my left ear.

Megan got on the phone with AB and figured out a plan of troubleshooting. She also taught me how to put the magnet on correctly, in a way that doesn’t twist the wire. We ended up having to go into the bathroom to do that so I could see how she was doing it, and walked past a family that was there for a candidate consultation so it was a little funny. I could also hear people speaking, but couldn’t understand them, and Megan said it was because they were speaking Italian.

The Problem Of Missing/Changing Sound – Solution
1. Make sure wire for magnet is secure, and placed on head properly.
2. Change out T-Mic (possible moisture?)
3. Change Battery (possible low power?)
4. Dehumidify it (and I need to stay on top of making sure the crystals are yellow, cuz the moisture from the environment affects it too.)

I am still not used to the concept of older people getting CIs. My experience has been that younger people and children have CIs, but never people who are in their 40s or older. I’ve always seen them with little ITE hearing aids, or just deaf, while us kids have had the BTEs or the CIs. I’m going to have to get used to it.

Kim had to remind me today that I’m doing extremely well with my CI, and that I need to be patient. She reminds me of and sounds so much like mom, with the “no nonsense from you” talk, and knows just exactly how to get me to shush and stop to think, just like mom does. “How long has it been?” “And you’re getting a score of what?”…”3 weeks…and 96%.” “That’s pretty good.” So here it goes…..I’ve got three programs to experiment with for a week and a half to two weeks. It’s going to be a challenge to leave my CI alone and learn to appreciate it without any adjustments in that time period. Patience is NOT one of my virtues as Dad has reminded me.

Kim also told me that her patients seem to prefer Verizon for their cell phones, so that’s something to keep in mind. I’m hoping that my phone can make it until the full-QWERTY version of the Blackberry Pearl comes out in Q1 2007.

In NY news, I talked to Karen, and she’s going to talk to Mandy about how they can best work with me when I return. I’m going to miss seeing Megan, Kim, and Dr. M, but I will see them in a few months. I really don’t like saying goodbye, especially to people that I like working with. Sometimes it’s nice to finish what you started, with the people you began it with. And this is why being bi-coastal stinks…I can’t have the best of both worlds in one place. I always have to say goodbye to a group of people in each place and adapt to a new environment and time zone two times a year, and I hate it (especially when I have to leave my family).

Today’s Sounds List
– Recognizing clapping at a restaurant
– Mom coming up behind me at noisy restaurant and saying “Sweetie”, and me not paying attention

That was my first recognized word on its own, where I’m not paying attention, and able to understand it without having to think about it.

 

Day 20 – Stay On My Ear! Sunday, August 27, 2006

Today I saw my stepmom and dad for the first time since I got the CI activated. I showed my stepmom all the stuff I got for the CI and explained everything to them. They also both saw my audiogram results from one week post-activation, and were impressed. My dad was especially pleased that I could understand the word jalapeno. 😀

We also looked at glasses for me today, and it was challenging to find a pair of glasses frames that didn’t press on the scar-area of my incision (since it still hurts, especially the little bulging spot), or cause my CI to fall off of my ear. The other criteria I had for my glasses was that they had to be super-lightweight, especially since the CI is already “heavy” on my ear. I also wanted a stylish pair of lime-green/bright-green glasses, because I’m all about the lime green. 😀 I will primarily be wearing my contact lenses, because I don’t like wearing glasses (especially in the extreme cold/snowy weather)! All I have to get is the prescription, which the doctor has to fax in. I’ll be happy to have glasses instead of sunglasses to watch TV before bed, because my glasses broke the night before I had my second surgery.

I got to play with some cell phones while we were out, and must link to them for reference: Motorola Q, LG V, Blackberry 8700g, and the XV6700. The representative seemed to suggest that the XV6700 would be the best one in terms of phone/email/music. My stepmom cautions against the SureType feature with the Blackberries, since they never get what you’re typing correct, and that’s what the upcoming Pearl has. -.-

I wish I could hear more with the CI, because everything sounds so quiet/muffled right now, but in certain situations it sounds great. If somebody’s up close to me, like within a foot, I can understand/hear the full timbre of what they’re saying. Otherwise, I’m like “What? What did you say? I can’t hear you.” At times, it makes me feel like that my hearing with the CI is worse than it was with the hearing aid. And today, I was having problems with the HA again. Grrr.

We also watched the Emmys, and it was frustrating because I could understand/lipread what they were saying, and the captions were several sentences behind, so I wasn’t getting that confirmation that what I was hearing was correct. I eventually gave up trying to read along and just read the newspaper, looking up occassionally.

Now I wonder what it’s going to be like when I go back to school and see the interpreter for all my classes. How am I going to reconcile what I am hearing with what the interpreter is signing/mouthing? The TV/captioning already drives me crazy. Oh wait, I’m supposed to be *LISTENING* with the CI. Silly me. Gonna have to work HARD to get to that point. Everything is still so visual for me, and I really need to break that habit and let my brain do the listening.

Bedtime. In the morning, a checkup with Dr. M for my surgical incision, and then Megan after that. I’m going to play with that program as long as she will let me. So much to do before I leave Wednesday. Aiiieee. I’m really not ready to end my summer break, as the entire summer has been all medical, not much fun/relaxation. But that’s real life.

Today’s Sounds List As Per Susan’s Request
– Hearing people drop dishes in the sink in the kitchen at the restaurant.
– Ice cubes clattering into glasses in the kitchen at the restaurant.
– Waitress dropping metal tray on floor.
– Baby at table behind us banging hands/silverware on table.
– Silverware/glassware clinking at restaurant.
– guy tripping over his feet/falling flat on his face outside of Best Buy and in front of three oncoming cars. everything literally STOPPED, all I heard was a “thump” as I was talking to my stepmom.

 

Listening Ability? How Does One Learn To Listen? Friday, August 25, 2006

It’s only been almost 3 weeks, and I’m already worried about the CI and my listening ability.

I wonder if I’m doing the right things to maximize my potential. Am I listening to the right stuff? Am I doing the right kinds of things to try and maximize my speech perception? All these types of questions and thoughts have been swirling around in my head.

I’ve been so used to doing therapy, therapy, therapy, and getting feedback from what I’m doing, that right now I feel like that what I do, on my own, isn’t helping. Everything I do has a visual component to it. It’s difficult to watch TV or read along with books, because I fall back on my “hearing aid” training, and use my vision more than using my brain to listen and understand what is being said. At the same time, I’m not getting the reinforcement of “yes, what I heard or thought I heard is indeed correct.”

On Monday, Susan said that I need to write for myself and not for others (where have I heard that before?). She wants me to write a daily log of my adventures in sound, and what I’m hearing, so that I can look back in 6 months and go “wow, that was a really rough time, but look where I am now and at what I’m hearing! YAY ME!”

I do well with the words in a list format, but have trouble with sentences. Mom did word lists with me, after I saw Megan earlier this week, and she started a new category of vegetables with me. However, I got it the hard way, instead of “mushroom”, “lettuce”, “tomato”, I was getting “portabella mushroom”, “bibb lettuce”, and “roma tomato”. That’s pretty much standard for our house, as we get different kinds of specific veggies for my guinea pig. However, I did get “jalapeno” right on the first try! She’s also been reading my favorite childhood book, “Cars, Trucks, And Things That Go” to me for listening practice. I love that book so much.

Today, I saw Megan for #6 and we tinkered around with the speech program some more. I have trouble with “C” and “M”, and hearing the first part of a word. I also told her about my concerns with listening. I know I don’t have patience (especially for somebody my age, as I was reminded by my dad on activation day!) and want more! She brought out the other computer that had the Sound and Beyond program that was made by Cochlear Americas. I got to play with it for awhile, and it was fantastic. I loved how if you get a word wrong, it repeats the correct word and the wrong word, so you can compare it.

This kind of program is right up my alley because it has a similar concept as the Touch&Tell that I had as a kid. What can I say, I love hands-on learning! It is awfully expensive, 290 dollars, but it might be an investment well worth making if it will help me, and I did enjoy using it…I could have played with it all day if I was allowed to.

I got 76% on the words when we played with the computer, she said I was doing pretty well for just under 3 weeks. The other cool thing this program does is that it plays music and then lets you pick which instrument produced that melody. I was able to get the piano and the xylophone right. But when it came to the violin, ughhhhhhhhh it sounded horrible! And I used to play the violin! But the piano sounded much better (after 10+ years of playing, I should have an ear for it).

Electrode #13 doesn’t have that special sound for me anymore. It’s so weird, because it sounded nothing like it did the last time. Megan did the beep test again today, and Electrode #6 sounded exactly like my mom’s old car alarm (park avenue) when it goes off. Now I have a way to describe what it sounds like to those who can’t hear what’s in my head!

T-Mic Hook: P1+2 – speech, P3 – 70/30 mix for DC.
DC Hook: P1+2 – iPOD only, P3 – 70 iPOD/30 environment.

I also have a battery log that Megan created so I can find out if I have a bad battery, a bad “charging slot” or if it’s just the program that is draining my battery fast on the CI. I do have powerful programs on my CI which draws a lot of power off the battery. My 18 hour battery is only lasting 12 hours, and I was totally unprepared for that the other day when the CI battery died on me.

 

On Being Hung Up By The Hospital Thursday, August 24, 2006

I am P-I-S-S-E-D.

I tried calling the nurses station over at the hospital to find out how my grandpa was doing, because my mom is over there, and not responding.

(18:39:38) My IP Relay: (F) 2nd floor
(18:39:44) My IP Relay: barbra
(18:39:49) My IP Relay: speaking ga
(18:40:12) My IP Relay: (WHILE U TYPED
(18:40:17) My IP Relay: i don t have time for this right
(18:40:20) My IP Relay: now) (HUNG UP ANOTHER CALL QQ) GA

Instead, Barbara, the nurse, she tells me “I don’t have time for this right now”.

I wonder if it would have been different if I had called on a regular phone, without using the relay, with the CI. I didn’t even get a chance to even say who I was or why I was calling. As soon as she heard “this is relay operator blah blah blah” she said that she didn’t have time for this right now, and hung up on me.

You bet that tomorrow morning I am calling the compliance officer at the hospital to lodge a complaint against her, because I do have her name and the floor she works on.

No deaf family member should be treated this way, whether they are calling through the relay or not. What if I was all on my own and didn’t have a way to find out what was going on? I’m not letting this one slide. I’ve had it.

 

A DNR Order is Needed for the T-Mobile Sidekick Wednesday, August 23, 2006

I spent the night at the emergency room with my soon-to-be-90-years-old grandpa. While in the middle of a phone call to my mom through the relay, my Sidekick decided to stop working.

The radio GPRS “detached” from the phone, and would not reattach, even with restarting and other troubleshooting. I could not connect to the internet, much less make a phone call through relay on AIM. I have had ongoing problems with the sidekick for the last two months, if not the last 4 years (30+ replacements within warranty periods). Sidekick b/w, Sidekick color, SKII, and now the new Sidekick 3…each one has had so many problems and negatives to it, that I have yet to hear enough positives to outweigh it. The new one isn’t any better.

To make a long story short, I had to retrieve my mom’s ancient, bare-bones cell phone from her car, because I had her car with me, use the speakerphone, and try my best to have a conversation with her, because the CI is not compatible with the phone, but I can hear with the speakerphone. I’m amazed that this simple piece of technology is so reliable and works fantastically, compared to this high-priced, overhyped gadget that is nothing but trouble.

The conclusion to all of this is that I am not going to get the Sidekick 3. I’ve started doing some research into other smartphones/PDAs, because I am not at the level where I am ready to understand speech and have a conversation on the phone. But as far as I am concerned, the Sidekick is never going to be a reliable phone, no matter how many incarnations they make of it.

Basically, this whole situation just deepens my resolve to be able to hear and understand speech. This is what the CI is for. I want to be able to pick up a phone ANYWHERE and be able to have a phone conversation with anybody, without having to rely on a keyboard to type my words out and get my message across. I don’t want to rely on other people to have to “voice” my message or “type” it for me onto a screen. I want to express myself and I want to hear others express themselves.

I want independence.

P.S. I think the Blackberry Pearl will be my choice, as Blackberries have been totally awesome (spoken as a previous user of the RIM 850, which I had first, before the SK), not to mention reliable due to their primary audience of government and major corporate clients. It comes out on Sept. 18th on T-Mobile, but a full-QWERTY keyboard is not expected until Q1 2007. Reliability, same features as SK3, and a cost of $199 vs $350 for the sidekick and its unreliability? I think I’d take the crackberry, only if it is CI-compatible.

P.P.S. new sound: listening to the college freshman almost continually vomit from drinking too much, as the paramedics were holding his head outside the room my grandpa was in. yay first week of school parties.