Whew!

About three weeks ago while having lunch with a friend I looked in my purse for my CI remote and couldn't find it.  I figured I had left it at home in the charger.  (I don't use it often.)  Occasionally, during the next couple of weeks, I thought about it and glanced superficially around, wondering where it was.  Then I got more serious about it.  Where could it be?

I searched in every pocketbook I'd used over the last several months, in every coat pocket and pants pocket, in all the drawers I ever would have thought to put it in, even in my husband's suit pockets and I could not find it.  So today I went to five restaurants and coffee shops I'd been in since I had noticed it "missing"--to no avail.  I stopped at a temple where I had attended a Bar Mitzvah recently and was shown through their lost-and-found--to no avail.  I emailed four people who had stayed with us recently, asking if they had possibly taken it home by mistake--to no avail. 

I was beginning to panic.

But tonight as I was changing stuff from one pocketbook to another just before we went out "all dressed up" I pulled it out of a hidden pocket in my everyday purse.  It had been covered over by something and I didn't realize there was a pocket there, so I missed it the first time.  What a relief!

I will be more careful from here on out.

A CI Moment at the Museum

Last week a friend and I went to the Philadelphia Museum of Art to see the Van Gogh exhibit.  I donned an audio tour, wondering whether I'd be able to hear more of the commentary than I had with only my hearing aids.  I could!

Putting the earphones in my ears, like hearing people do, did not work.  I had to hold the right earphone and move it around until I located the "sweet spot"--near my CI microphones.  Then I had to hold it in place there whenever I hit the play button to hear the commentary about a new painting.  I could have handled it a bit more easily if I had been an octopus, but I managed with  my two hands.  It was a pleasure!

Other than that, things are pretty much the same.  The spot behind my ear still hurts, especially when I remove the processor, but not as much as it did before.  Acquaintances I bump into are still surprised to learn how little I heard before my CI and how much more I can hear now.   I am still doing very well, but I don't hear everything and I do need to ask for repeats sometimes.  And I am still counting my blessings.

A New Marker

It's been a while since I've posted but today's activity seems an appropriate marker to report.  We went to our first orchestra concert since my implant, this one featuring a violin soloist in Prokofiev's Violin Concerto No. 1.  Let me confess that I do not have much expertise in classical music, so I do not know exactly what to expect when I listen to the orchestra's selections.  I would not know if they skipped a few segments or if they played "too fast" or anything.  I just enjoy what I hear, usually.

Tonight we were sitting in the Conductor's Circle at the Kimmel Center in Philadelphia.  That means that we were sitting behind and above the orchestra, watching the conductor's face and arms and looking down on the musicians.  That also means that the violin soloist had her back to us and was playing toward the audience. 

I believe I heard everything they played, with the exception of the first notes of the violin concerto before the soloist began.  I heard her, just not what must have gone on during a brief silence (to me) before she began to play.  I even heard her playing high notes in second and third positions on her high E string.  That is amazing!  Prior to my implant I would not have heard that.  In fact, one incident that showed me how "deaf" I was was when we were at a chamber music concert and the violinist was playing solo, wildly moving his bow across the strings, and I heard nothing.  He was a pantomime.

Once again, I realize how very lucky I am. 

I find that in general I am doing quite well, hearing maybe 80% of what comes my way.  I do ask for repeats sometimes but people interacting with me for the first time since my implant are shocked at the difference. 

I can use both my cell phone and my regular phone, usually having the best results when I hold the receiver against my ear like people without hearing problems do.  I think I do slightly better on my cell phone but I can succeed on either one.  When I am sitting at my desk and answer my CapTel phone and see the captions come up, it is difficult for me to just listen and not look at them.  Then I often get confused because I am hearing one thing and reading another.  I'm better off not to look at the captions.

I no longer hesitate to answer the phone when it is ringing, no matter which phone I am near.  And I make appointments with much less trepidation and work my way through some of those "if you want..., press..." messages successfully.  I feel myself coming out of my shell.

I hear birds chirping when I am outside and now wish I had paid more attention to what different kinds sound like so I could identify what I am hearing.  Maybe I'll work on that this summer.

I still have not figured out how to use my Kindle Touch to have books read to me while I have the text available on the screen.  The first book I ordered didn't have any text, so I just listened to it.  The second book I ordered didn't have the Text to Speech capability (that's up to the publisher, I now understand) so I am just reading it.  When I finish reading this one (my Book Club is going to discuss it soon), I'll have to contact Kindle or Amazon and find out how I can tell what to expect before I order a book.  I still believe it should work and should be a good way to practice listening.

Once again, I'll be silent here for a while until I feel there's something worth reporting.  Be well.

Remote problem again

My Remote froze on Saturday evening, for the second time.  When I reached Cochlear America customer service today, the technician walked me through the process of restarting it.  So it is functioning again at this point.  He said that if this happens a third time, they will send me a new remote.  

I did not panic this time because I realized that my CI was still able to work, although I did not know how to switch its programs without the remote.  That did not seem to be a major problem.  I believe my CI stayed in the Noise Program from Saturday evening until this afternoon, but I heard well and was not bothered by the difference.

I finally figured out how to us my Kindle the way I had originally intended to: listening to the book while having the pages open in front of me so that I can look if I need to.  I need to buy regular books (with words and pages), not Audible books (without words or pages).  Then I need to use the Text to Voice mechanism on the Kindle to have the book read to me.  I'll try that out as soon as I finish listening to The Help and understanding as much as I can without seeing any of the words.  I am nowhere near 100% in that endeavor.  In fact, I am struggling to follow the story.

I still find the telephone a challenge.  I can hear, and I have had successful conversations on my cell phone, but when I am seated at my desk I still tend to look at the captions.  I think they have become a kind of crutch for me and I need to wean myself off of them and try to focus on what I am hearing, not what I am seeing.  I'm working on that.

On to a new stage

Today I met with my audiologist again.  She tested my comprehension (soundfield testing).  Her comment to me when it was all over was that I am doing amazingly well.  To have my scores at this stage (2 months after implant) is terrific.  For those who will know what the percentage scores mean, I reached 91% in quiet, 59% in some noise, and 34% in lots of noise.  For the monosyllables, I was at 72% for words, and 85% for phonemes.  The bottom line is that I am supposed to continue doing what I have been doing, practicing everything I've been practicing, and not see her again until May, unless a problem arises.  She believes I will continue to have improvement.

So I think I will do much less frequent posting to my blog.  I don't think there will be that much to say.

To bring you a bit more up to date, though, I have been listening to music with my music program and with my regular program, and I have come to the conclusion that I do better with my regular program.  My audiologist said that makes sense to her.  To add more particulars, I have listened to Tom Paxton, Gordon Lightfoot, Joan Baez, and Judy Collins (from the sixties folk music scene) and enjoyed all their songs.  I was familiar with all those I listened to.  I also listened to Hadda Brooks and to the songs Jodie Picoult wrote to go with her new book, Sing You Home.  I was somewhat familiar with those.  I also listened to the sound track from The English Patient.  For all those I must say I was very successful.  The music sounded very much like it did when I had normal hearing.  However, when I tried Chris Botti, I found the trumpet sounds very tinny and weird.  Furthermore, when I listened to a classical CD featuring Midori (the violinist), I did not succeed.  I could not find the high notes and so it was sort of like a mishmosh.  When I was watching my hearing disappear earlier in my life, it was a violinist's high notes that made that change clearest to me.  During one chamber music concert, for example, when the violinist took the solo part, it was totally like a pantomime to me.  I heard nothing, but I could see her gesturing wildly.

I was also able to understand an interview my daughter had had before my CI was activated, that I couldn't understand when it was live.  I played the taped version last night and could understand everything that was said: Brian Lehrer speaking directly from the studio, my daughter on the phone from a hotel in Chicago to the studio in NYC, and listeners on a variety of other phones.  I was very happy.

In fact, in general I am very happy.  I can barely believe how well I can understand at this point and I am extremely thankful for all those who helped me get here. 

A shift in gears

Today I shifted gears with my listening practice.  I decided that I am wasting my time listening to the ESL stories because I can understand more than 98% of what they say.  So I brought back my Kindle with The Help as an audio book and started listening--without any words in front of me.  The narrator speaks with a Southern Black dialect and I cannot understand every word but I am able to follow much of what she says.  (I did read the book about nine months ago so I know the basic story.)  I believe that if I continue to listen to this story without reading any of it I will improve my comprehension.  So that's my plan.

Last night I attended a board meeting for an organization I am active in.  There are usually between 10 and 15 people at these meetings.  For the last year or so I have spent much of my time at these meetings frantically looking around the table to see who is speaking.  I have had no chance at understanding much of what was being said and so I have volunteered little on my own.  Well, last night I understood almost everything that was said, even from a man whose face was full of beard.  That was a major improvement.

I'm working on using my land line with my CI.  I find I can hear some of what's said when I hold the receiver slightly above my CI.  Doing that and looking at my captions means that I can just carry on a conversation, not very smoothly, but I can just about do it--with a few requests for repeats.  I do find that the quality of my conversations on my cell phone vary, too.  Sometimes I just need to turn around a bit to make the contact better but sometimes it is just not as easy as at other times and I don't know why.  Perhaps I'll figure it out over time.  Meanwhile I am practicing using the phone a lot.

Wonder of wonder, miracle of miracles

Last night I tried talking on a regular cell phone.  It worked!!!  With my CI side, I understood what my fast-talking daughter on the other coast was saying to me!  Then I called at least another dozen people and understood them all.  Yes, each one sounded like Minnie Mouse, but I could comprehend almost all of what each one said.  I could not believe it.  I am thrilled beyond belief!  I feel a new-found freedom.

I was pressed to try the cell phone because my computer system was down, and with it my captioned phones.  So I felt I couldn't talk on the phone and I couldn't get the emails I thought were trying to reach me, several of them very important.  I also couldn't practice listening.  Then I remembered that my audi had said on Friday that for phone use, cell phones would probably work best.  So I used my husband's to call him here in the house and could hear him. Then I went on to the greater world.  I had trouble stopping!

I had a couple of other newsworthy events yesterday.  I walked to the dentist's and I think I heard birds chirping as I was walking.  When I was there my dentist donned his mask, of course, and I was able to understand everything he said anyway.  I am making amazing progress.

More progress

Last night we went to the movies.  Before my CI, we had almost totally stopped going to any movie theater that did not offer a captioned film.  So last night was an experiment.  We saw The Iron Lady and both of us were blown away by Meryl Streep's performance.  I understood almost everything that was said on screen and a lot of what was said from off the parameters of the screen itself.  That was a huge improvement!

Then this morning I initiated a conversation with a stranger in the ladies room at our gym.  It didn't occur to me how unusual that was until I was well into the conversation.  Then I realized that I had been avoiding conversations like that because I could not understand much of what was said and often didn't want to explain that I had a hearing problem.  I felt like I was coming out of my shell.  That, too, is progress.

One other observation, on the rong-chang listening practice website, I noticed that some of the stories were being read by the familiar female reader but that they sounded as if she were speaking down a tunnel or through a microphone.  They were more difficult for me to understand completely.  I needed to listen to some a second time and occasionally even to look at some of the words before I could understand them via hearing.

That's the latest.

Learning more

I found a terrific site for practicing listening.  It is a program for people trying to learn English as a second language, and it is perfect for new CI users.  It is http://www.rong-chang.com.  Scrolling down the main page, you can find stories grouped by level of complexity.  I started at low intermediate (I think) and am listening to one story after another.  I find that I can understand almost everything without looking at the text, which is there in front of me.  There are female and male readers, both of whom enunciate well.  It is a great "find."  In addition, when I go back in, after a pause of some kind, I can pick up where I left off.  The titles change color when I have listened to those stories.

Talk about listening, my audi tested my ability to hear sounds via my CI.  She wanted me to score between 40 and 15 db; I scored between 30 and 10, well into the "normal hearing" range.  She was happy and I am thrilled!

She also recommended another practice site.  It is The Listening Room, a service of Advanced Bionics.  It comes up via a Google search.  I haven't tried it yet.

I do find that my hearing deteriorates when I am tired, which I still am more than normal.  That deterioration is typical, I understand.  I am still bugged by a sore spot on the back of my ear, where the processor battery sits and probably rubs.  I am going to try to alleviate that soreness with mole skin.  I'll let you know if it helps.

I learned today that my remote does not turn itself off.  The processor does.  So I must remember to shut it down when I don't need it, like overnight or when it is stashed away in my purse or somewhere.

So here I am, two weeks after activation, absolutely amazed at all I can hear and understand.  What a gift this CI is!

Some observations and experiences

Today was beautiful, sunny and in the mid-60s, so we went out walking.  I noticed that when the wind blew, the static sound--similar to what you hear when someone blows directly into a microphone--in my CI was much less overbearing than it had been in my hearing aids.  I had wondered how that would be.  I'm happy with my new knowledge.

I find that so far I can enjoy classical music better with my regular program than with my "music" program and that classical is much better, more normal, than jazz.  The jazz seems to be much more distorted and whiney or tinny in the higher notes.  With my regular program I am now able to understand most of the banter on our public radio station and to enjoy the classical music.  That's a huge improvement!

I did have an adventure yesterday.  When trying to switch programs via my remote, it refused to respond.  It stayed black.  I put it back into the charger, thinking that maybe the overnight charge had not taken, and left it there for a while.  It became fully charged quickly and when I unplugged it, it did open up properly but very quickly it died again, turned black, and refused to respond.  I emailed my audi in a panic.  Responding quickly, she made one brief suggestion and then said that if I still had trouble I should get hold of Cochlear customer support.  I did that and the Cochlear employee walked me through a basic restart of my remote.  That worked and I have not had any further problems with it...yet. 

One thing I learned during this process was that I was not turning the remote off correctly; rather I was waiting for it to turn itself off, as it does after a few seconds of inactivity.  I don't know if that was causing a problem.  A second thing I learned was the difference between "tapping" and "holding" the Cochlear button.

Next task: listening practice.

An update

Last week was not fun, but I woke up this morning feeling better and hope I will stay that way.

I had my second audiologist's appointment on Friday and came away with a single new program and four different ways to modify it--focus, noise, music and everyday.  This program does not give me the clarity I had with the louder ones I used last week so I find that I cannot understand as much on the car radio or on TV as I did with the earlier ones.  But I know that I must just experiment and see what works best for me.  I am trying to do that.

I find it easier to put the processor on.  Today I succeeded on my first try.  I have bought some mole skin to put on the sore spot behind my ear but haven't affixed it yet.  I got an explanation for the sensitivity on my ear on the side that was implanted: the ear is bent forward while the operation is done behind it and then bent back into place.  It is not exactly "turned inside out" as I thought I had heard, but it is close. (-:

Using the Kindle to practice listening is not as simple as I first thought.  My audiologist is recommending that I read and listen to one paragraph and then reverse the Kindle to the beginning of that paragraph and just listen to it.  I'm not sure I can manipulate my Kindle that finitely and, until today, I haven't have the energy to try.  I will try that later today.  When I try to close my eyes and just listen for a while, I lose my place and have a hard time finding it again.  I may find it is better to use the other programs that are available through Cochlear and the recommendations I've kept on my email of things other recipients have found useful, like listening to children's books being read and calling the weather stations. 

I'm a little bit disappointed in the amount of practice I've put in so far, but I will get there.  That's it for today.

Today

This morning we were expecting a painter to arrive at 9:00 to discuss a paint job.  So we dutifully got up, straightened up, etc. and then I started to put on my CI.  Except I couldn't!  For 20 minutes I fished around for the magnet to suck onto the implant, Lee helping me for about half the time, but no matter where I moved it there was no "grab."  Finally, in disgust, I set it down on the counter and answered the door, deaf on the right side.

We discussed the project and then the painter left and I went back to my CI task.  It worked on my second go-round!  And it's been successfully hanging where it belongs since then.  But what frustration!

I'm getting the hang of listening to my Kindle read while I look at the text.  I can now turn the Kindle on and off when I want to and get it to pick up where we last stopped when I get back to it again.  I try sometimes to not look at the text, but just to listen.  That's difficult for me because I do not understand a lot and then I can't find where I am in the text.  So, for now, I think I need both to hear and to read.  And there's still a lot I don't know about the Kindle.

But mostly I'm going forward, not backward, so that's progress.

More new understanding

Well, I'm home from the internist's without an answer to what is causing the fever, but things are being cultured to get better clues.  Meanwhile, I am not feeling bad.

So, I heard both the single ping and the multiple pings in the backing-up car.  I understood a lot of the weather and traffic update on the car radio (it's been a long time since I could understand any of that).  I heard the nurse summon me into the doctor's inner sanctum and I could understand much of what my doctor was saying to me even when she was facing her computer, not me.  All of this is progress.


Next, it's Kindle listening time.

The good, the bad and the ugly?

The bad is that I have fever again.  The ugly may be what's causing it.  I have an 11:30 appointment with my internist and, hopefully, will find out then.

Meanwhile, though, I have had lots of success with my activated implant so far this week.  I came home with 4 programs in my processor.  I left the audiologist's office in the 2nd, with a weaker one to fall back on if I felt I needed it.  I am now in the 3rd, half-way up in volume and I'm sure I'll end up in the 4th before I go back to the audiologist on Friday.  I am supposed to increase the volume and the program as much as I can.

I have only minimal squeaks and scrapes.  Most of the conversations I hear I can understand as just that, some with a high-pitched Darth Vader tinge.  I spent Saturday night as part of a family celebration in a large, noisy steak house.  I could understand some of the conversation around our table, but by no means all.  I did clearly hear the waitress describe the specials at the table next to ours, and I could have repeated them back to our table, but when the waiter was describing them to us, I could not understand him.  Go figure!  I'm used to having  more trouble with women's voices than with men's.

I heard the ping when my husband backed our car up yesterday morning, signifying that he was getting close to something behind him.  I haven't heard that for years!

At a family brunch yesterday with four jabbering kids under the age of 7, I heard more Darth Vader than at any other time.  I had lots of trouble understanding what the kids were saying, but not as much as I normally do.

After my initial difficulty putting the processor and magnet thing on my head on Saturday morning, I have now succeeded several times, but never the first time I try.  It usually takes me half a dozen attempts.  It is really working well but I do have a tender spot on the back of my ear, where it rubs, which I'll need to figure out how to minimize. 

I'm also working on using my new Kindle to read to me so I can listen...I have gotten it to work, but I haven't figured out how to stop it except by turning it off and I haven't figured out how to find the words on the screen while the sound is coming out.  So that too is not easy.  What I was doing yesterday was to read the actual book, which I happen to have, while my Kindle speaks the text to me.  But when the phone rang I couldn't figure out how to stop it and so after the call I was faced with backing up so I could pick up where I actually stopped listening or starting over.  I started over. Everything seems to be an adventure.


Setting all the pieces up to charge overnight is becoming more routine, so I am more comfortable doing that.  There is less mystery in that process, but it's not all clear.  I haven't figured out, for example, how to tell if the disposable batteries are out of juice and I haven't figured out a system for rotating the rechargeable batteries so I don't always use the same one.  I also don't know if I need to turn the processor on before I try to attach it in place, or not.  It seems to work better for me if I do, but I think I read that it doesn't matter.  There's a lot to read and remember.

Not a walk in the park

Lest you and I both think this is going to be simple, let me describe how today has gone so far.  We woke up to 3 inches of new snow and needed to be at the tennis court less than two hours later.  So we dressed for tennis and went outside with our shovels and brooms to clean one car and clear a path.  I did not put my processor on for fear that it would fall off and end up in the snow.  We cleared enough and planned to head out, just as soon as I could get the processor on.  But I couldn't!  I fidgeted with it for 15 or 20 minutes, looking at the directions and photos and could not get the magnet to hold over its spot.  I simply couldn't find the spot!  So I grabbed everything and figured I'd get it on while we drove.  I did, finally, and went into the court with only my normal trepidation when I am filling in in a men's game.  The sounds I heard at first from the processor were a bit metallic and scratchy, but that soon disappeared and I was hearing just fine.

We played, poorly for the most part, and then suddenly my sound was dead and my processor was lying on the court.  It had simply fallen off.  I grabbed it, set it on the bench and finished our game without it.

We are back home but I do not have it back on yet.  I am about to read everything I have and figure out (hopefully) why I'm having trouble.  But I wanted to take you along on this trip and explain a bit about why it seems to be complicated.  First, I came home yesterday from the audiologist's with a suitcase (12 x 18 x 6) full of cochlear implant stuff.  It contains at least 14 boxes, several CDs, a box full of guides, chargers for everything (rechargeable batteries,  remote control, etc.), all of which seem mysterious.  I did succeed in hooking up everything last night before I went to bed so that it would all be charged this morning.  At least I think I did.  Perhaps I was supposed to charge the processor, too.  I didn't.

No one warned me that there would be all this stuff and that it would be this complicated, although I have read about magnets not being strong enough to keep the processor in place and about processors suddenly flying off and ending up stuck to some metal bar nearby.

So I am about to begin to wade through this information to learn how to use this wonderful gizmo.  I am still absolutely thrilled that I am on this journey and pleased that you are traveling with me. 

Activation happened!

Today my cochlear implant was activated.  It was an amazing experience!  I can't believe how much I understood of what my audiologist said (from behind a black screen).  It must have been at least 75%; Lee says 95%. 

I have two streams of sounds coming in.  One, from the CI side, has the tinny Darth Vader sound everyone else describes and is sometimes offensively scratchy, but not often.  The sounds from the other side (with or without the old hearing aid in place there) sound pretty much like sounds have always sounded to me, when I could hear them.  If this is just the beginning and things get better from here, it is indeed a miracle!  I am feeling very lucky!

My assignment for the next week is to learn about all this new equipment, use my CI and processor whenever I am awake and my hearing aid only occasionally, and listen, listen, listen as I go on with my life.  I do not have a specific listening assignment, but I plan to begin listening to a book on my Kindle whenever I have the time.

The initial turn-on process included an electronic, computer-guided trip on each of ten of the 26 electrodes in an attempt to identify the point at which my auditory nerve picked up the sound.   Then we mapped how loud it was still comfortable for me and tried to make the volume consistent across the 10 electrodes.  It is amazing what this equipment is capable of discerning.

For those of you still along for the ride, thanks for keeping me company and helping to celebrate this day.

Activation rescheduled

My activation is tentatively rescheduled for next Friday and I'm off to see my internist to try to get help getting rid of whatever I have.

Today's activation cancelled

I woke up with 101.5 degree temperature this morning after feeling hot overnight and getting up very frequently.  So my appointment for today has been canceled.  It will be rescheduled. 

Now I have to figure out how to get rid of whatever I have.  I do not feel terrific.

Just waiting

Fewer pains, fewer Tylenol caplets, fewer naps, but otherwise not much new to report.  Until Friday, it's just a waiting game.

One week till activation

One week from now I hope to be hearing something through my CI.  I have no idea what!  I keep thinking about an email that was sent to a member of a group I belong to, from a good friend of hers.  She basically said, "I can't wait till you're activated!  You're going to hate it!!"

I'm trying to keep that comment in mind so I will not be disappointed when I finally hear something.  I'd love to understand language, of course, but if it is just loud noise and I need to work to make sense out of it, that will be okay as long as my expectations are not set too high.  I just hope it works somehow!

My cold is almost entirely gone now and I don't sense much of a difference in my ability to carry on one-on-one conversations since before my CI.  I dealt with a "genius" at an Apple Store yesterday who was working to fix a problem on my computer and I only had to ask my husband for a translation twice during that interaction.  Today a friend was here helping me learn to use my new Kindle so I'll be able to practice listening and I figured out everything she was saying to me, one way or another.  That's about the way things went before my implant.  So if I am not one of the lucky implantees, and I don't get any benefit from the implant, I will not be much worse off than I was before I tried this.

But I plan to go for the gold--with practice, perseverance, and patience, as advised.  I hope to be able to document lots of CI moments, occasions when I am amazed by something I can hear again, but I am trying to recognize and accept that that may take a long time.

Moving toward normal

I'm back to driving and carefully donning regular glasses (with two arms).  I also walked 2 1/4 miles yesterday with normal, not excessive, sleep last night.  I did get up once in the middle of the night to take Tylenol, however, so I am still dealing with the after-effects of the surgery.  The pain still comes and goes, jumping around to different spots. 

Today marks 16 days after surgery.

First new year's resolution

Trying to get back into some kind of exercise regimen, I walked two miles yesterday...and then slept twelve hours last night after a brief afternoon nap.  It seems I have a way to go!