In My Head

Pit stop

2008-12-02T22:40:00-05:00

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

2008-07-06T18:15:00-05:00

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...

2008-07-06T17:09:00-05:00

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.

Two years

2008-04-15T13:26:00-05:00

Today I had my two-year post appointment. Hard to believe it's been two years! The first thing Sharon did was put me in the booth to see how I did with pure tones. The results were similar to the test I had in early September. With my CI, I show a normal to mild hearing loss, which is a huge difference from a profound loss. Sharon also did the Hearing In Noise Test (HINT), using sentences and a live voice. This was difficult, as the sentences were completely random. Not having context or any clues whatsoever is something I'm not used to. I got 29 words correct out of 106. In September, I got about 35 out of 106, but Sharon repeated the sentences then, and didn't this time. So 29/106 without repetition is actually an improvement.

After that, we took a look at my programs and talked about what I wanted to do. I asked for a little more volume, so Sharon increased the M levels by six levels. Then we created a program in which the M levels were decreased and the IDR (see previous posts) was reduced to 60 from 65. This will hopefully eliminate some of the background noise that can be distracting. I'm thinking I'll try using this program when I'm in noisy environments, like restaurants, to see if I can better follow conversation.

Sharon says I'm doing well, and don't need to have another map for another year, unless I feel the need to come back sooner. I have two sessions of therapy left, and then I'll take a break for the summer. I'm looking forward to attending the AG Bell convention in Milwaukee this June, as there are two sessions in particular that will be of interest: one is on aural rehab for adults with CIs, and the other is on how to use the iPod in auditory therapy.

Erika joined me for this appointment, so she could see what a mapping involves. On the way out, we ran into Dave, who I worked with almost a year ago. See Dave, I'm blogging - you happy? :)

In the meantime, I continue to pick up the occasional phrase without looking. One time I was at my friend's house, when her son said something as he went up the stairs. I couldn't see him, but heard him. I asked if he said, "I tripped over the chair," and what he had said was, "I tripped over the stairs." Or something like that. I was proud of myself since I hadn't been actively listening, it was a random phrase, and this isn't a child I hear every day.