§ ¶Bang! Twitch?
Was I developing a tic? I started noticing that my left eye was twitching a little too often. I began paying a little more attention and finally realized that it happened when I heard certain frequencies. One night at dinner, Samara banged her spoon on her plate -- on purpose, mind you. *Twitch! Twitch!* My eye exploded. I decided to test my theory. I took my implant off and told her to bang her spoon again. My eye was oblivious. I put my implant back on and prepared myself for the onslaught. Sure enough, my eye went crazy. My theory was officially confirmed.It wasn't just loud noises like the banging of a spoon that made my eye twitch, either. Even just someone talking to me could do it. There was no way to predict. It was very frustrating, not to mention unnerving. I posted on Facebook: "Lisa just realized that her eye twitches when she hears a certain frequency. Time to get a new map!" A couple friends got smart and asked, "What frequency, exactly?" and "Eeeee! Did I hit it?"
I'm not sure when it started, but I suspect soon after my new map. I just didn't make the connection for a while. Sharon squeezed me in during lunchtime today. Figuring out how to get rid of the twitching took trial and error, since the program doesn't allow her to test groups of bands with the High Fidelity 120 program. Doing them individually didn't work either. She eventually figured out that it was mostly bands 11 and 12 - basically I was getting too much electrical stimulation between the bands. The auditory nerve is close to the facial nerve, which explains the twitching. Apparently I'm not the only cochlear implant user experiencing this.
Sharon brought the problematic bands down and kept making certain noises (clapping, banging, saying "bup bup bup") to see if my eye twitched until we got rid of it. Hopefully we accomplished that! My new program (P1) now has new significantly decreased bands of 9-12, while others were increased. My new P2 has slightly increased bands of 7, 8, 12, 14, and 15, which will give me the perception of increased volume. My new P3 has a global increase of two clicks from P2. Sharon feels this new program is more balanced than the map I got last time, which she said was a little out of whack but I seemed to like.
I'm fine with being a bionic woman. I just don't want other people controlling my muscles!!
§ ¶Pit stop
After I checked my perfectly fine hearing aid battery for the umpteenth time, I realized the reason for the quietness might be my CI. I now only see Sharon annually, unless something comes up in between. My last appointment was April 15. I went in this morning and left three hours later. Whew!Sharon and the graduate audiology student working with her, Reem, had me listen to the different frequency bands (four electrodes each) and balance out the maximum loudness levels. In the end, three of them remained about the same, while one increased significantly in the middle frequencies. This is my new program.
At first, the sound felt like it was coming in my ear too much. It wasn't painful - yet - but as we did some rehab practice, I was distracted enough from it that it was tolerable. We'll see how I do with it. The work was exhausting. I had to go back and forth between two different frequencies and get them to the same volume. It was difficult to distinguish between the frequencies and volume. Sometimes the noise -- which was basically reverberating in my head -- started making me dizzy. That meant immediately lowering the volume.
In the sound booth, I had to raise my hand when I heard a tone, and then I was given the HINT sentences test from a recording (in which I try to repeat as much of the sentence back as possible). Sharon hadn't attempted to do this before as it's very difficult. After that, she repeated the sentences in her own voice, reading them at a slow rate with some repetition. My audiogram showed an improvement from the last one in April, with more hearing in the middle frequencies.
With the HINT recorded sentences, I got 21% correct, which is pretty good for someone like me who wasn't raised auditory-verbal and is straining to understand words that are completely out of context in a recorded, unfamiliar voice. With Sharon's HINT sentences, I scored 57%, or 61/107. In April, I scored 29/106, which is 27%. That's a significant improvement!
Having this visually presented actually caused me to tear up a bit. Maybe it's because I'm PMSing, but it was reaffirming to see that I'm actually making progress. You're probably wondering why you haven't heard from me since June. It's because I haven't had anything to report. Maybe I plateaued. I continue to hear random phrases or sentences without looking, and actually heard several this past weekend. I still need to incorporate aural rehab into my schedule. I really haven't made any major advances. I know the CI journey is a marathon, not a sprint. Still, it's reassuring to know I'm still in it. And hopefully this new map will be like a cool drink of water.
§ ¶Addendum
I forgot to add this to my previous entry, because I put it in the kids' blog, but it applies here too!The opening session involved a performance by the Barrel of Monkeys (http://www.barrelofmonkeys.org/) a theater group that acted out stories that children in AG Bell submitted as part of a writing contest. Suggested topics included deafness and what you want to be when you grow up. Samara wrote a story entitled "My Deaf Mom" that was selected and the second one performed. It was neat to see their take on it. I had prepared her for the possibility that hers might be picked. She didn't want it to be. When it was being performed, she burrowed herself into Aaron but watched it anyway and seemed to enjoy it. She laughed a lot at the other ones. She commented later that people were coming up to her afterwards, even people she didn't know. Now she can say she was published and produced at the age of six. Here's her story (and, by the way, the only one from this perspective):
My Deaf Mom, by Samara Steinfeld
I have a deaf mom. It is hard to get her attention. Sometimes I have to tap her to get her attention. Sometimes I have to tell her when the telephone rings. Sometimes I help her practice her listening. Every Friday she goes to practice her listening. Sometimes when we are on the phone and it has no captioning, I help interpret. She can hear better now because she has a cochlear implant and hearing aid. It is fun having a deaf mom!
§ ¶It's Summertime, and the Rehab's Easy...
I finished rehab at the end of April and decided to take the summer off. I recently returned from the AG Bell convention in Milwaukee. I was very much looking forward to one of the first sessions: Aural Rehabilitation for Adults with Cochlear Implants. Unfortunately, it was very disappointing. The presenter mostly talked about her program and went through her forms in detail. There was a panel of two family members, where one had a CI. They demonstrated how they do CI rehab with each other. The only thing I learned is that the game of Outburst might be a good tool.The other session I wanted to attend was, of course, the last one: Plug and Play iPod and Pod Casting in Auditory Therapy. Even though we have an iPod, I've never used it, but now I'm eager to use it as a rehab tool. I'll even upload my cousin Sam's new single!
I did discover that Advanced Bionics will soon have a free, interactive web site called The Listening Room, with an area devoted to teens and adults. Just what I've been looking for! I managed to complain to the company at its booth about the poor design of its processor dry store case. I no longer put my processor in it at night, which means it's not being protected against heat and humidity. The reason? The case is designed for implants worn on the right side of the head; mine is on the left. Therefore, when I put it in, the cord gets all twisted and doesn't sit on my head properly. Hopefully they'll look into this and make a different version for us lefties!
The big thing these days is bilateral implants - not just in kids, but adults too. At this point, I have no interest in getting another CI. I get enough benefit and balance from my hearing aid. I also like keeping one ear's residual hearing, just in case. If I were to lose that, however, I would probably look into it more.
