Last Tuesday, the 24th, was my 3rd Activation Day at Johns Hopkins. The whole day started off terribly. First, the 6:30 morning news reported two accidents, both on my planned route to Baltimore. So I shortened my workout and made a mad dash shower, get dressed, and race out the door 30 minutes before I planned to leave. I was on the road by 7:30. Matthew, the master of back road travel (its a Novinger thing), plotted a new course of travel for me which included lots of winding back roads. His strategy worked and I made it to my appointment on time. However, on the way up, a bad thing happened. Remember how I mentioned my processor (i.e. hearing aid) has three different programs on it? While up until that morning, I had only used one program...not on purpose--I forgot I had two other programs to choose from but I also enjoyed the program I had been using for a week. Well, it suddenly occurred to me that I never used the other two programs so I decided to switch over and see what it sounded like. Big mistake.
The other two programs, by default, are MUCH louder than the program I had been using for a week. As soon as I flipped over, my face began to seizure and twitch. Needless to say, I immediately turned the processor off. I wanted to verify that the processor elicited that response so I carefully turned it back on and sure enough, as soon as I heard anything, my right eye seized up, my upper right lip twitched, and the muscles on the right side of my neck spazzed out. It was terrifying to be completely honest. I left the processor off until I arrived at my appointment.
After describing what had happened, Ryan smiled knowingly and told me the seizures were a reaction to sound that was simply too loud. The seizures and twitches were my brain's gag reflex, in other words. Since I did not turn my volume level down before transferring to the other programs, my auditory nerves were shocked by the intensity and loudness of sound. He assured me the twitches and seizures would go away in a few days. But, since they had flared up, we had to locate the electrode causing the twitches and seizures. This was the most unpleasant experience in recent memory. He would produce a rhythmic sound and increase the intensity until my face began to freak out again. He did this several times...for each electrode...and I believe I have 4. Ugh. For an hour, my face was all over the place. But the appointment was not entirely negative. I did leave with three new programs, expanded to include new frequencies and Ryan's assurances that he feels I'm making solid progress.
From Tuesday night until pretty much yesterday, anytime someone laughed, dropped a book, slammed a door, or if I talked, my right eye would twitch. It made me so self-conscious and absolutely drove me crazy. Its not fun to laugh, then grab your eyelid to keep it from spazzing out. But it did fade..and this morning, almost a week after the first seizure, I can say they're down to about maybe one or two an hour. A definite improvement.
Now onto the good stuff!!! First, my dad pointed out last week on a phone conversation that he thinks I'm talking better. Matthew concurs! This is exciting because that means I'm more aware of my own speech, and therefore, am more cognitive of how I'm shaping sounds. This is especially true with words that have very specific sounds like "ssh" and "cchh" and all of my "ssttt." While my first hope with this experience was to gain better sound comprehension, I'm excited to find that I'm gaining some wonderful side effects of improved hearing.
Saturday, Matthew and I went mountain biking. I'm able to wear my processor while biking so I got to enjoy my heaving breathing and little gasps as we tumbled down hillsides ridden with rocks and overgrown tree roots (what a great sport!!!). Then, while we were taking a break, I was just listening to the forest around me...and I could hear all these wonderful variations of sound. The first thing were the birds...I could tell there was a distinctive different between my friend Mr. Bird who lives outside our apartment patio, and all the birds in the forest. It was a happy moment for me to sit on the ground and hear all this life around me. I love these moments.
Sunday...Sunday...was AWESOME. My processor came with a few different parts--one of which is a small hook that has a little output for a wire. The wire can be inserted into a computer to listen to music, a phone for a conversation, or an Ipod. Yesterday, I decided to experiment with this feature by hooking my processor up to Matthew's Ipod. Oh my gosh...I've never heard music so clearly! It feeds directly into my hearing aid, just like music would feed directly into your ears via ear phones or head phones. Just a tiny wire made this happen! Sundays I go for long runs that typically last between one and two hours. During marathon training, however, I can be out there for two to three hours at a time...so long runs are looooong. I've trained myself to daydream, problem-solve, plan, pray...whatever to entertain myself as I run and run and run and run...but still, there are moments of boredom when you just wish you had someone to chat with...or....music to listen to! Yesterday, I took the Ipod with me on my long run and I had the absolute best run ever! I made a playlist with random songs just to try it out... when "My Humps" came on, I literally was shaking my butt here and there...then Sean Paul's "Temperature" came on and I'm rocking to it with my body...then some good country, then a big Broadway ballad I tried to (in a gasping, panting way) sing along with...it was awesome. Before I knew it, I was done with my run and I was on cloud 9. I've never worked out to music before so I never appreciated the motivating and entertaining factor it can have! I'm so excited to create a workout playlist and take it out with me. I'm running a half marathon in September and then the Marine Corp marathon in October so I'll be doing long runs all summer long. I need playlist ideas people!
Last night, I talked to my mom on the speaker phone and she was sounding better to me. I could pick out words she was saying without Matthew's help. I think I'm back to where I was pre-surgery as far as my sound comprehension goes with people. I'm confident I'll continue to improve. I think I'm overcoming my first bump in the road, as far as the twitches go. During moments of frustration, I try to remind myself to be patient with progress. This is a race I can't win by sprinting...baby steps. =)
Love to you all!
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Monday, April 30, 2007
Saturday, April 21, 2007
Birds and Barking
Greetings!
Fairfax, Virginia weather has finally turned a corner. Its a gorgeous Saturday morning so I'm sitting on the patio of my apartment, enjoying the sunshine and warm temperatures. I'm also having fun with "outside" sounds!
But let me back up a second and talk about how the rest of the week has been unfolding.
On Wednesday, Matthew and I returned to Baltimore for my 2nd day of Activation. The first twenty minutes of the appointment, I just sat there and listened to a rhythmic, repetitive sound very similar to hoof beats. Every once in a while, I'd notice the rhythm would change slightly, either slowing down or subtly increasing in volume. After my doctor was satisfied with the sound mapping he had completed, he turned my implant back on to the normal setting.
We did a variety of therapeutic activities. First, he opened his little box of musical instruments and shook, rang, and banged the different instruments and asked me to describe the sound. What I heard was a dramatic improvement from my 1st day -- instead of hearing a swooshing, buzzing sound when he shook a particular rattle, I heard a squeaky sound. His face lit up with delight because what I was hearing was much closer to the natural sound the instrument was producing. When he rang his little bell, it definitely sounded like a ring-a-ling rather than a buzz-a-buzz! This simple exercise was so exciting because I could see the dramatic improvements myself.
Next, we did our "oooooo"s and "aaahhhhh"s and "eeeeee"s. He covered his mouth and I repeated back what I heard. I did well, but he raised the bar when he brought out "mmmmmm" and challenged me to recognize it when he alternated between "oooooooo" and "mmmmmm." Those are the two hardest sounds for me to recognize independently of lip-reading. "Aaahhhh" is the easiest!
We moved onto word recognition next. He covered his mouth and asked me to repeat back simple, everyday sentences we often encounter. I did pretty good! Some were more tricky than others. It was an encouraging experience for me though because when I did goof up, my mistakes were actually not too far off from the real words. Most of you know how crazy my sentences can be if I lip-read wrong! The most exciting part of this activity was I could acutely hear the sound "ssshhhh" which still blows my mind. So when my doctor said the word "see", I was slow to recognize it but I definitely heard the "sssss" sound at the beginning! These clues will help my brain learn how to hear better.
At the end of the appointment, my doctor said: "Just for fun, I'm going to put the program that you had before today's appointment, back on your processor." I said okay ... waited a few seconds ... then my doctor started talking but I couldn't hear him. So I lipread him saying: "Its on." I couldn't believe it. The first program I had on my 1st day was so quiet compared to the one I have on now. That whole first 20 minutes of the appointment where I was listening to hoof beats, he was gradually stimulating my auditory nerves, increasing the intensity. He showed this to me on his computer screen -- it was very cool to see where my neurons were firing! I have a lot more juice in my implant now!
I left the appointment excited about my progress!
Wednesday and Thursday evening were challenging, however. After so much stimulation, I was exhausted in the evenings. My doctor had warned me that there would be times when I just wanted to take my processor (my hearing aid) off because I'd be so tired of sound. I thought he was nuts when he told me this but I definitely understand now.
After a full day of work and then class, when I get home, I'm wiped out. Everything sounds louder and more intense. My darling dogs--I've wanted to hurl them out the door because they just LOOOOVVEEEE barking hello at everyone who walks by the window. Or leaves. Or sometimes, nothing at all! The barking is so intense. I used to think Matthew had very little tolerance for their racket but now, I completely understand. I hate barking.
My friend made me feel better about my frustration over being so tired in the evenings. She told me I was like a newborn! Babies sleep so much because they're thrust into this new world of sound and activity. My brain is so overstimulated at the end of the day, I'm just tired! Yesterday was better -- I was able to go out with some good friends and I had a good time.
And now...I'm sitting outside on my lovely patio listening to birds!!! I was out here studying and noticed I kept hearing this repetitive sound. I asked Matthew to come outside and help me figure out what I was hearing. I wagged my finger to show him each time I heard the sound. Immediately he started grinning and told me I was hearing birds! I've never heard birds before!!! Annnnd I thought I was also hearing some odd white noise because it was a fast tapping sound....but those sounds are baby birds talking to loud momma bird!!! Haha! I love this.
So this is where I"ll be for a majority of the afternoon...working on my paper, listening to the birds.
=)
I go back to Baltimore on Tuesday for another sound mapping appointment. I'll post again soon!
Love,
Becky
Fairfax, Virginia weather has finally turned a corner. Its a gorgeous Saturday morning so I'm sitting on the patio of my apartment, enjoying the sunshine and warm temperatures. I'm also having fun with "outside" sounds!
But let me back up a second and talk about how the rest of the week has been unfolding.
On Wednesday, Matthew and I returned to Baltimore for my 2nd day of Activation. The first twenty minutes of the appointment, I just sat there and listened to a rhythmic, repetitive sound very similar to hoof beats. Every once in a while, I'd notice the rhythm would change slightly, either slowing down or subtly increasing in volume. After my doctor was satisfied with the sound mapping he had completed, he turned my implant back on to the normal setting.
We did a variety of therapeutic activities. First, he opened his little box of musical instruments and shook, rang, and banged the different instruments and asked me to describe the sound. What I heard was a dramatic improvement from my 1st day -- instead of hearing a swooshing, buzzing sound when he shook a particular rattle, I heard a squeaky sound. His face lit up with delight because what I was hearing was much closer to the natural sound the instrument was producing. When he rang his little bell, it definitely sounded like a ring-a-ling rather than a buzz-a-buzz! This simple exercise was so exciting because I could see the dramatic improvements myself.
Next, we did our "oooooo"s and "aaahhhhh"s and "eeeeee"s. He covered his mouth and I repeated back what I heard. I did well, but he raised the bar when he brought out "mmmmmm" and challenged me to recognize it when he alternated between "oooooooo" and "mmmmmm." Those are the two hardest sounds for me to recognize independently of lip-reading. "Aaahhhh" is the easiest!
We moved onto word recognition next. He covered his mouth and asked me to repeat back simple, everyday sentences we often encounter. I did pretty good! Some were more tricky than others. It was an encouraging experience for me though because when I did goof up, my mistakes were actually not too far off from the real words. Most of you know how crazy my sentences can be if I lip-read wrong! The most exciting part of this activity was I could acutely hear the sound "ssshhhh" which still blows my mind. So when my doctor said the word "see", I was slow to recognize it but I definitely heard the "sssss" sound at the beginning! These clues will help my brain learn how to hear better.
At the end of the appointment, my doctor said: "Just for fun, I'm going to put the program that you had before today's appointment, back on your processor." I said okay ... waited a few seconds ... then my doctor started talking but I couldn't hear him. So I lipread him saying: "Its on." I couldn't believe it. The first program I had on my 1st day was so quiet compared to the one I have on now. That whole first 20 minutes of the appointment where I was listening to hoof beats, he was gradually stimulating my auditory nerves, increasing the intensity. He showed this to me on his computer screen -- it was very cool to see where my neurons were firing! I have a lot more juice in my implant now!
I left the appointment excited about my progress!
Wednesday and Thursday evening were challenging, however. After so much stimulation, I was exhausted in the evenings. My doctor had warned me that there would be times when I just wanted to take my processor (my hearing aid) off because I'd be so tired of sound. I thought he was nuts when he told me this but I definitely understand now.
After a full day of work and then class, when I get home, I'm wiped out. Everything sounds louder and more intense. My darling dogs--I've wanted to hurl them out the door because they just LOOOOVVEEEE barking hello at everyone who walks by the window. Or leaves. Or sometimes, nothing at all! The barking is so intense. I used to think Matthew had very little tolerance for their racket but now, I completely understand. I hate barking.
My friend made me feel better about my frustration over being so tired in the evenings. She told me I was like a newborn! Babies sleep so much because they're thrust into this new world of sound and activity. My brain is so overstimulated at the end of the day, I'm just tired! Yesterday was better -- I was able to go out with some good friends and I had a good time.
And now...I'm sitting outside on my lovely patio listening to birds!!! I was out here studying and noticed I kept hearing this repetitive sound. I asked Matthew to come outside and help me figure out what I was hearing. I wagged my finger to show him each time I heard the sound. Immediately he started grinning and told me I was hearing birds! I've never heard birds before!!! Annnnd I thought I was also hearing some odd white noise because it was a fast tapping sound....but those sounds are baby birds talking to loud momma bird!!! Haha! I love this.
So this is where I"ll be for a majority of the afternoon...working on my paper, listening to the birds.
=)
I go back to Baltimore on Tuesday for another sound mapping appointment. I'll post again soon!
Love,
Becky
Wednesday, April 18, 2007
My First 24 Hours!
Yesterday morning at 10:00 my cochlear implant was turned on for the first time. Nothing could have prepared me for what I experienced.
On the drive up to Johns Hopkins, I alternated between feelings of excitement, anxiety, and dread. While I was excited, yet nervous, to finally experience my first day of hearing through the implant, I was dreading the worse. What if it didn't work? What if my expectations are too high? What if I end up regretting my decision to have the surgery in the first place? These thoughts tumbled around in my brain as we made our way to Baltimore.
After being stuck in the most horrific traffic jam, we barely made it to my appointment on time. My audiologost, Ryan Carpenter, greeted us with a smile and asked, "are you ready?" I grinned and responded with an eager "yes" and followed him to his office. It was surreal walking down the hall because I knew in a few minutes, my life would be changed forever.
I signed some paperwork and we talked about my recovery. I fidgeted in my chair. Then it was TIME. He placed a large box on his desk filled with equipment and little gadgets. I would take the entire thing home with me. There were TWO hearing aids in there, along with TWO external processors, and EIGHT batteries! I couldn't believe all the equipment I was being given. I was fully aware of the monetary value of the equipment in front of me. I'm grateful to have backups to my backups! God bless medical insurance.
He started to assemble my hearing aid and external processor, hooking it up to a long cord connected to his computer. Then I had my first refrigerator moment -- he placed the external processor on my skull, directly over the magnetic plate. I had a magnet on my head! I played around with it for a few minutes, very amused with how well it stuck to my head.
After a few moments of Ryan describing to me what I'd hear at first, he finally turned it ON. Although he gradually raised the volume, the first time I heard a sound, I jumped out of my skin. I heard a robotic, buzzing noise and after a few seconds, I realized that sound was my voice and Ryan's!
I had to relax for a second, I was completely thrown off guard. Then the fun stuff started. He shuffled papers and I heard it! He opened his desk drawer to retrieve a pen and I heard stuff rattling around in the drawer! He reached into his filing cabinet and as he moved through files, I heard the metal hooks scraping on the file holder. He held a paper over his mouth and made "eeeee" sounds, then "aaahhhh" sounds, and then finally, "ooooooo" sounds. I could tell them apart pretty well. Next, he placed a sheet of paper in front of me with several rows of three words. Then, covering his mouth, he would say one word on that line and I'd repeat it back. With the visual cue, I realized I could immediately pick up on syllables; specifically, I was able to detect 3 syllables in the word "qualification" and they sounded so crisp and acute. While it'd be unlikely I could repeat a word without a visual cue, I was excited because this was new -- acute syllables!
At the end of the appointment, Ryan warned me that when I left his office, I'd hear a constant stream of sound. Matthew would have to help me figure out what I heard. He wasn't kidding! When I put on my jacket, I was startled and it took a second before Matthew realized that what I was hearing was the rustle of my jacket! Then as I left Ryan's office, I acutely heard the rattle of the doorknob. We were very slow leaving the hospital, stopping every few minutes to point out new sounds. An elevator ding. A baby coughing around the corner. Feet shuffling on the lobby floor. A woman digging her keys out of her purse behind me. While I've heard sounds like this before, I've never heard them so crisply or acutely. They are very specific sounds that stand out of me, rather than blending into a background of chaotic noise. I hear sounds, not noise. When we left the hospital, I had my first teary-eyed moment when I heard the wind. Now, I've heard wind before, but not the sound of wind...with my old hearing aids, wind rushing by the microphones created noise and made it hard to hear a person talking--not pleasant. But yesterday, I stood facing the wind, and it sounded so incredibly different. It whooshed!
Last night, Matthew and I had the chance to talk to my family. We called home and I got to talk to aunts, uncles, my parents, and my grandparents. I'm lucky to have such a supportive family!!! I can't wait to go home and share my experiences. After the phone call, Matthew and I had a lot of fun in the apartment. We played music for a little while on the surround sound. He played 10,000 Maniacs for me and I loved it because I could hear all these crazy percussions going on in the background that I have never been able to hear before. Rather than hearing a big mess of sounds, I could detect individual parts of the song. Very cool experience. I heard my dog crunching on her dog food. The salad bag or the potato chip bag crinkles in a way its never crinkled before...loudly and crisply!
Today, I return to Johns Hopkins for my 2nd day of sound mapping with Ryan. I'm excited because he's supposed to make it even louder! Right now, the things that will sound the best are simple sounds. My finger tapping on a desk, a zipper opening and closing, or my lips smacking as I eat crackers and peanut butter! Ryan assured me that within a week, human voices should sound less robotic and more human. But thats ok...I'm enjoying the simple sounds right now because they are all new experiences for me. While I've heard fingers tapping before, never like this.
Crisp. Defined. Specific.
Thank you, everyone, for your continued support and prayers. I really feel everyone's good wishes...I'm lucky to have so many positive individuals in my life to share this experience with. I will post again tomorrow!
Love,
Becky
On the drive up to Johns Hopkins, I alternated between feelings of excitement, anxiety, and dread. While I was excited, yet nervous, to finally experience my first day of hearing through the implant, I was dreading the worse. What if it didn't work? What if my expectations are too high? What if I end up regretting my decision to have the surgery in the first place? These thoughts tumbled around in my brain as we made our way to Baltimore.
After being stuck in the most horrific traffic jam, we barely made it to my appointment on time. My audiologost, Ryan Carpenter, greeted us with a smile and asked, "are you ready?" I grinned and responded with an eager "yes" and followed him to his office. It was surreal walking down the hall because I knew in a few minutes, my life would be changed forever.
I signed some paperwork and we talked about my recovery. I fidgeted in my chair. Then it was TIME. He placed a large box on his desk filled with equipment and little gadgets. I would take the entire thing home with me. There were TWO hearing aids in there, along with TWO external processors, and EIGHT batteries! I couldn't believe all the equipment I was being given. I was fully aware of the monetary value of the equipment in front of me. I'm grateful to have backups to my backups! God bless medical insurance.
He started to assemble my hearing aid and external processor, hooking it up to a long cord connected to his computer. Then I had my first refrigerator moment -- he placed the external processor on my skull, directly over the magnetic plate. I had a magnet on my head! I played around with it for a few minutes, very amused with how well it stuck to my head.
After a few moments of Ryan describing to me what I'd hear at first, he finally turned it ON. Although he gradually raised the volume, the first time I heard a sound, I jumped out of my skin. I heard a robotic, buzzing noise and after a few seconds, I realized that sound was my voice and Ryan's!
I had to relax for a second, I was completely thrown off guard. Then the fun stuff started. He shuffled papers and I heard it! He opened his desk drawer to retrieve a pen and I heard stuff rattling around in the drawer! He reached into his filing cabinet and as he moved through files, I heard the metal hooks scraping on the file holder. He held a paper over his mouth and made "eeeee" sounds, then "aaahhhh" sounds, and then finally, "ooooooo" sounds. I could tell them apart pretty well. Next, he placed a sheet of paper in front of me with several rows of three words. Then, covering his mouth, he would say one word on that line and I'd repeat it back. With the visual cue, I realized I could immediately pick up on syllables; specifically, I was able to detect 3 syllables in the word "qualification" and they sounded so crisp and acute. While it'd be unlikely I could repeat a word without a visual cue, I was excited because this was new -- acute syllables!
At the end of the appointment, Ryan warned me that when I left his office, I'd hear a constant stream of sound. Matthew would have to help me figure out what I heard. He wasn't kidding! When I put on my jacket, I was startled and it took a second before Matthew realized that what I was hearing was the rustle of my jacket! Then as I left Ryan's office, I acutely heard the rattle of the doorknob. We were very slow leaving the hospital, stopping every few minutes to point out new sounds. An elevator ding. A baby coughing around the corner. Feet shuffling on the lobby floor. A woman digging her keys out of her purse behind me. While I've heard sounds like this before, I've never heard them so crisply or acutely. They are very specific sounds that stand out of me, rather than blending into a background of chaotic noise. I hear sounds, not noise. When we left the hospital, I had my first teary-eyed moment when I heard the wind. Now, I've heard wind before, but not the sound of wind...with my old hearing aids, wind rushing by the microphones created noise and made it hard to hear a person talking--not pleasant. But yesterday, I stood facing the wind, and it sounded so incredibly different. It whooshed!
Last night, Matthew and I had the chance to talk to my family. We called home and I got to talk to aunts, uncles, my parents, and my grandparents. I'm lucky to have such a supportive family!!! I can't wait to go home and share my experiences. After the phone call, Matthew and I had a lot of fun in the apartment. We played music for a little while on the surround sound. He played 10,000 Maniacs for me and I loved it because I could hear all these crazy percussions going on in the background that I have never been able to hear before. Rather than hearing a big mess of sounds, I could detect individual parts of the song. Very cool experience. I heard my dog crunching on her dog food. The salad bag or the potato chip bag crinkles in a way its never crinkled before...loudly and crisply!
Today, I return to Johns Hopkins for my 2nd day of sound mapping with Ryan. I'm excited because he's supposed to make it even louder! Right now, the things that will sound the best are simple sounds. My finger tapping on a desk, a zipper opening and closing, or my lips smacking as I eat crackers and peanut butter! Ryan assured me that within a week, human voices should sound less robotic and more human. But thats ok...I'm enjoying the simple sounds right now because they are all new experiences for me. While I've heard fingers tapping before, never like this.
Crisp. Defined. Specific.
Thank you, everyone, for your continued support and prayers. I really feel everyone's good wishes...I'm lucky to have so many positive individuals in my life to share this experience with. I will post again tomorrow!
Love,
Becky
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