6 months and still not done

Visited the audiologist for my 6 month check in / tune up.  Still struggle with getting upset when I get tested with the dreaded word recognition test.  Will I ever get used to this????  Each time, the poor audiologist gets an earful of whiny, teary, adult temper tantrum complaints.  God!  It’s so embarassing.  She tries to reassure me that I’m not worst one she’s seen.  Hmm… some small comfort I guess.

Bottom line is the device is working well.  My test scores have improved again. I’m not a superstar but I’m better than average.  My latest WRS is 74%.  Considering that I started at 20% that’s obviously a big gain.  And so, the audiologist is baffled that I don’t feel like I’m doing that much better.  Frankly, I’m baffled too.

Don’t get me wrong.  I am hearing a lot more, especially environmental sounds.  And I do like this.  However, what tends to stick out for me are my trouble spots.  The typical complaints of CI users regarding the challenges of speech discrimination within background noise, especially competing conversations.   For example, certain soft voices, hearing people in larger meetings, group social situations, background noise.  I understand that this is very common for CI users.  Disappointingly, the most troublesome situations pre-implant are still troublesome for me.  And here’s the baffling part, sometimes it even feels more so?

Since I’m in a science and technology research environment, at MIT, I am curious to research possible explanations outside of my crazy brain, either physiological or technical that may explain some of my qualitative experience.   I want to learn more about how my hearing and CI work.  How they sometimes work together and sometimes are seemingly at odds.  My left ear now has 100% electrical hearing via  the cochlear implant and my right ear still has some usable natural hearing with no hearing aid.  Last time my right ear was tested it was at approximately 30%.

In my limited research so far, I stumbled upon a scholarly article that explained in-depth the workings of the CI, including science, technology,  surgical and user experience issues.  While there were parts that were beyond my understanding, much of it was very interesting and accessible to the non-engineer/scientist.  Amazing and fascinating, what an accomplishment.  As the paper says, the cochlear implant is “the most successful neural prosthesis” and “the over-arching goal of a cochlear implant is to use electric stimulation safely to provide or restore functional hearing.”  Note that this says functional hearing, not normal, not perfect.  And I can tell you from direct experience it is definitely functional.  Why am I so incredibly demanding!

The paper also touched on the fact that natural hearing still far outpaces CI hearing especially in terms of background noise.  It suggests that binaural low frequency hearing can be  helpful in discrimination ability.

My Hypotheses

For why the hearing in noise is impacting me the way it is.

  • I did not use hearing aids, which have similar challenges in noise.  Many CI users exclaim how much better it is than a hearing aid.  And, hearing aid users face similar challenges as CI users do with hearing in noise.  Had I used hearing aids previously, the transition to a CI might not seem so challenging in noisy situations and would feel, overall, like a big improvement.
  • Prior to my implant, I had some lower frequency residual hearing in both of my ears.  I could still hear speech and heavily relied on lip reading.  While my overall hearing was perhaps minimal, the binaural ability I had may have assisted me with discrimination in noise.  The loss of residual hearing in my left ear, could feel like a set back in terms of coping in noise.
  • It’s just a matter of time.  Eventually I will do better.

Thanks for reading!

Barbara

Doing good and feeling ready for the next level

I’m coming up on 5 months post activation and doing well.  I’m feeling less fatigued from hearing in general I think.  I still have challenges and work on accepting them as best I can.  It’s very good practice for me to keep trying to focus on what I can do versus what I cannot.   Someday.  Maybe.  I tell you I had better live a long, long time because I am an incredibly slow learner when it comes to “life lessons”.

My biggest challenge lately is background noise.  I’m told this is an incredibly common complaint for both hearing aid and CI users.  I recently attended a nephew’s wedding in a crowded party tent space, with stone floor, and a live band.  I found it very hard to hear other people unless I was on the periphery where it was a little less intense.  Later when I asked family members if they thought it was noisy they said no and I wanted to punch them.  Sorry.  I’m five again.

Not knowing what’s possible, in terms of programming for my processor, I don’t know whether to just deal with it or if there are adjustments that can help.  So far in my CI journey, it’s mainly been a question of time and getting used to things.  I recently found a presentation online intended for audiologists that describes different types of hearing assistance, including cochlear implants, and strategies for patients who get them.  It was interesting to me because I saw that my progress, complaints and challenges are all very textbook.  There really isn’t anything all that special about me ;-p

I’ve been posting questions on the Advanced Bionics user forum which is very responsive and very helpful.  That’s been a real eye opener too.  The support from others who have gone through the CI experience has been a real gift.  I’ve met a lot of very generous and caring people on this journey so far and I hope I can give back myself.

As I get ready for my 6 month visit to the audiologist in September I want to know more about what the heck she’s doing with the mapping process, aka processor programming.  I found a good post from a CI user in the UK, describing mapping and programming for cochlear implant processors: http://funnyoldlife.wordpress.com/2010/05/04/cochlear-implant-mapping/

Wish me luck!

What’s that sound? Crickets!

My husband and I were walking our 4 dogs the other night and I started hearing eeee eeee….eeee eeee….eeee eeee.  At first I thought it was some sort of car alarm in the distance.  I asked my husband, “What’s that sound?”  and try to describe what I’m hearing.  He tells me, “Crickets!”

Crickets!?  I remember hearing crickets on summer nights way, way back when I was a small child, maybe 5 years old.  It’s over 45 years later and now thanks to my cochlear implant I can hear them again.  How cool is that?  This impresses me and as I write it down I get a little bit teary.  I am a lucky girl 🙂

husband Peter walking four dogs

Music Not so Good so far

I wanted to add a post about how music is for me because this question comes up a lot.  Both from people just curious about the implant and candidates who are wondering what may lie ahead for them.

Prior to my implant I had 20-30% hearing in both ears, mainly in the lower ranges including, thankfully, a usable amount in the frequencies most common for speech.  I could enjoy music, the beat, the quality of certain voices, melody.  I couldn’t understand most lyrics and tended to prefer simpler music featuring a solo singer or melodic instrumentals.  I loved dance music, 70’s and 80’s pop, disco…

When I was doing my own research on CI’s and music, I was told that music appreciation with an implant can vary quite a bit.  Some implant recipients say it’s great and some say it’s terrible.  My older brother who had a similar hearing history as me, has not had good luck with music.

With my implant, so far, there are some things that sound “okay” such as Michael Jackson’s “Billie Jean” with a simple bass line beat.  (Sadly, I can’t say I care for that song very much.)  Most music sounds pretty bad to me.  I do not yet have any programs on my processor that are optimized for music so my guess is that music is being treated like speech and that just makes it sound weird because it’s not.  Certain elements in the music are accentuated and the melody and subtleties get lost.  I’ve been experimenting with different songs on my iPod and I’ve yet to figure out why certain music sounds better or worse.

I’ve talked to some implant users who say they are loving music again.  More often it seems that older familiar music sounds best to them.  In some cases, I think it’s individuals who lost hearing suddenly and have good, complete music memories ready to be reactivated.  It’s definitely somewhat of mystery though and there is much discussion and some research going on in the CI community.  Recently I saw Dr. Charles Limb speak at the Hearing Loss Association of America conference in Rhode Island.  He’s a musician, avid music fan, and a CI surgeon.  He’s also doing research on music appreciation for cochlear implant users and there’s an interesting TED talk where he discusses his work and research:: http://www.ted.com/talks/lang/en/charles_limb_building_the_musical_muscle.html  One funny moment at the conference was when he played sound files to simulate what music can sound like via a cochlear implant.  Funny because there were many CI users in the audience so how could they really evaluate?  He realized the dilemma and was a good sport about acknowledging the irony 😉

There are some aural rehab tools out there via the cochlear implant manufacturers websites.  I haven’t explored these in detail yet.  One that I’m aware of is called Hope Notes, by Cochlear America.

I hope I don’t discourage any candidates who may read this.  First of all, everyone’s experience is different.  There are so many factors that come into play.  The top priority for cochlear implant technology has been speech recognition and while I’d like music to be better speech is the most important thing for me.  Secondly, I ain’t done yet.  My journey is still in progress and my hearing is will continue to evolve, including my experience with music.  Stay tuned…

My CI goes to the beach :-)

Portrait shot Barbara wearing Neptune processor on beach

First summer beach vacation with my cochlear implant.  I’m so happy to have the waterproof Neptune processor because I don’t have to worry about protecting my new equipment from the elements.  I even took a quick dip in the ocean with it on!  Although it’s not officially rated for salt water.  However, it continues to function so I don’t think any harm was done.  And I’m loving the off the ear design in hot sticky weather.  Much more comfortable I think.

Aside from the equipment itself, what’s different now?

  • The soft sand makes noise as I walk through it.
  • The sound of the waves is SO much louder than I knew!
  • I can hear the sounds of voices across the Provincetown Bay tidal flats.  I can’t understand what they’re saying but I am reminded that I’m not alone.
  • The beach umbrella flapping in a strong wind is loud.
  • Riding bikes with my sister I can hear what she’s saying, as she rides in front of me.  Sometimes.  This is an improvement.
  • I’m starting to hear differences in bird calls.  My sister points out the distinctive call of the cardinal.  Pretty cool.
  • I hear the sounds of gray seals just off shore at a National Seashore spot in Truro.  They sound funny.
Barb standing in front of Dunes at Truro

Barb in front of the Dunes at Truro

Audiologist and speech language pathologist – 3 months out

Back to Mass Eye and Ear for my 3 month post activation follow up.  Go through the paces.  Testing, tears and mapping (device programming).  I’m doing well.  Better than your average implant recipient.  My ability to detect different sounds is at the mild hearing loss level.  Unbelievable right?  My whole word recognition score has gone from 55% to 66%.  So why the tears?  I continue to want to fly wildly down the black diamond ski trails but I’m still working my way off the bunny slope.  It’s normal.  I still to struggle with hearing challenges such as soft spoken people, group situations, and background noise.

I’m told to focus on my what I can do versus what I can’t.  This is good advice and I really do want to listen to it.

The following day I finally have my appointment with a speech language pathologist.  It’s part of the standard set of follow up appointments for new cochlear implant users at MEEI.  I honestly have no idea what a speech language pathologist does but I’m hoping she can offer some advice on rehab activities that would be good for me.  I was so impressed with this woman.  First of all she was a very caring and sympathetic listener.  After I vented about some of my frustrations she commented, “Sounds like you tend to be hard on yourself”. Uhm, yeah, that’s true.  She did some basic testing to get a sense of how much I could understand without lip reading.  She started with some sets of words, then sentences, then some unstructured conversation.  I did well.

She also asked me questions that I’ve never been asked before.  Some really basic stuff like, “When did you first notice your hearing was causing you difficulty?  As a child?  In high school?” , “Do you think you always had some hearing loss?”, “Do you feel comfortable asking for help to hear others better?”

She touched on the strategies I already use to make my hearing loss known and give others tips to communicate better with me, such as face me, don’t cover your mouth, slow down a little, etc., etc.  I said I was hoping I could put some of these tools away now that I have a CI.  Maybe eventually, in some situations, but I will never have “normal” hearing and I need to accept that.

The speech pathologist also pointed out that the effort for successful communication does not rest solely on my shoulders.  It is a shared experience and others can and will help me, if I tell them what to do.  Maybe I sound like a dum-dum but this was revelatory for me.  No one has ever talked to me about my hearing in this way before.  I realized just how alone I’ve felt in dealing with the challenges of living with severe hearing loss.  And a lot this starts with me, thinking I’m supposed to handle it on my own.  Where do I get these ideas?

Aural Rehab Activities

Because I want to improve as quickly as I can I’m making an effort to do some rehab activities on a regular basis.  And while I think my rate of improvement with the implant may be to a large extent out of my hands, doing something gives me the illusion of some control.  I think it’s actually helping too 🙂

Here are some of the aurl rehabilitation tools I’ve been working with:

  • Advanced Bionics Listening Room: Teens and Adults.    You might have to create a login but  I don’t know that you need to be an AB user to take advantage of these resources.  Give it a shot if you’re interested.There’s a lot of different practice tools here.  Among the resources availalble is a pc based program for listening practice called CLIX. I plug in with my direct connect cable to use it.  There’s a placement test and exercises at various levels depending on how you score overall.  The general format is like a word recognition test.  You hear a word and then select the “correct” word from a grid with 4 choices.  However, unlike the word recognition at the audiologist, here you can repeat it.  Usage tip: To retake the placement test, on the Main Menu click on ‘Test – On Your Own’.  It looks like a column heading but it’s not.Overall I’m doing well with this tool.  However, I seem to have plateaued and I’m stuck on the last two levels, which I guess are the most difficult.  For the life of me, I can not reliably distinguish between cake/take, taste / paste,  knees / keys,  narc/ Mark.  I’m planning to take some notes to my next appointment with the audiologist.  I don’t know if I will improve with repetition and time or if I need adjustments in my programs.
  • Med-El  – Sentence Matrix.  I like that this tool is web-based and can be used from any computer.  There are various settings you can select such as male/female voice, slow-fast speech speed, and amount of background noise (none-high).  The voice says a sentence and you click on the words, which are laid out in a matrix with multiple choices per word in the sentence.  Usage tip: Click on More in the Sentence Matrix description block from the main page to start.
  • Cochlear America Telephone listening practice.  This one is very cool I think.  You dial a phone number and are able to do several listening activities and read along on the web site for the text.  Each day there is a new word list and small passage.  So far the passage texts have been excerpts from fairy tales by the Brothers Grimm, which is fun.
  • HearCoach. A free app for iPhone.  It focuses on word recognition, with and without background noise, and number recognition.  There are multiple levels of difficulty for word recognition with high levels having increasing amounts of background noise.  I made it through a couple of levels but I’m at a point now where the background noise makes it ridiculously difficult for me and I think my score is just function of random guessing.  Hmm…  what to do, what to do.
  • Audio books.  Listen to an audio book while reading along on the hardcopy.  The recommendation is to start with a simple book, either children’s or young adult, something that’s familiar.  I’ve been trying to take advantage of the public library’s digital catalog to do this and use a kindle book plus audio book using 2 different programs on my laptop.  Finding both available simultaneously can be tricky.  My first book was Charlotte’s Web.  Now I’m working on adult fiction and mainly taking what’s available.  A friend at work loaned me the Hunger Games in both hardcopy and audio, which was my favorite so far.

Do I need a psychologist or an audiologist?

The biggest challenge for me is psychological in terms of adjusting to the implant and truly accepting my hearing loss.  I apologize if I sound repetitive when I say that part of me was hoping that I would no longer be hard of hearing once I had my implant.  No one ever told me this was a possible or achievable outcome.  I know it’s not.  But still that is my deepest, secret, not-based-in-reality wish.

I’m so tired of the effort and adjustments I need to make for each and every communication.  I have to think so much about hearing.  It’s hard for me to believe it will be easier and maybe it already is some degree easier but it’s subtle and I feel cheated.  Yes, yes, this is a spoiled bratty attitude and I know I need to be positive to do as well as I can hearing-wise.  It’s hard.

I read on support forums and blogs about the “miracles” and “wow moments”.  I’m struggling with feelings of guilt.  Why don’t I share these sentiments?  Part of it, I think, is that quite a few recipients were at a point where communication was impossible.  With an implant they rejoin the hearing world.  And this is truly a miracle.  For me, I was already part of the hearing world.  Admittedly, I was somewhat limping along and my struggles were slowly but surely getting worse.  The only choice I had for better hearing, or even stable hearing, was the cochlear implant.  Another factor may be that  some folks who are implant evangelists are speaking several years post activation. They’re at peak performance with the implant.  I’m still a beginner at 2 months out.

The biggest change I notice is the awareness of environmental sounds.  This is good.  The combination of the technology and the human brain is truly incredible.  How is it possible that this device does what it does?

My goal now is to lessen and eliminate difficulties understanding speech.  When I have difficulty hearing someone and others do not it depresses me.  What can I or should I be able to look forward to?  Am I hearing some percentage better in everyday communication situations?  How can I assess this?  Questions for an audiologist?

When I was tested a month ago my scores had tripled since activation.  The audiologist said I was doing better than average.  Do I feel three times better about my communication abilities?  It’s hard to measure in a simple way.  I’m not sure.

I want to hear punchlines

I think this probably a common phenomenon with hard of hearing people.  At least it is with me.

Oftentimes in group settings, work meetings or social,  I’ll be mostly following what someone says and then they make a funny comment or perhaps deliver the punchline of a joke.  Others in the room will laugh and I miss it.  So then what do I do?  My choices are: laugh as if I heard it, remain unaffected, ask for the comment to be repeated, assume a semi-bemused quizzical expression.  I generally try to remain open and don’t laugh because I’m done faking it.  However, it really bugs me.  And I wonder how often I’m perceived as either not having a sense of humor or just being dense.

With jokes in particular the voice cadence tends to change when the punchline is delivered and often drops in volume and is easily missed by someone like me.

I’m hoping that over time with my implant and improving hearing ability that this changes.

Because, I really do have a sense of humor and love to laugh.

Did you hear the one about a man and duck who walk into a bar…

Why isn’t my life soooo easy now? Reflections

I guess going into the cochlear implant experience I thought I’d be starting where my hearing was and just adding on some new cool features.   I think part of me hoped I’d be magically and completely “cured”.  No one told me this, ever, and I know it’s a fantasy wish.  I’m always going to be hard of hearing but, with the implant, much less so.

Let me start with an official disclaimer:

“I admit that I probably have way too high expectations of myself regarding where I should be at and what I should be able to do now that I have the implant.  It’s still early, not even 2 months post activation.  I’ve already seen a big improvement within a month, when tested.  I’ve been told that improvement will happen quite a bit in the first 6 months and can continue past that point as well.”

Before

I was down to 20% (WRS) on my left ear and 30% (WRS) on my right.  WRS = word recognition score.  I hadn’t been tested in years because as far as I knew I was still not a good candidate for hearing aids and I thought I was “too good” for a cochlear implant.  I was getting most of my speech comprehension via lip reading and contextual clues.  However, I was really, really, really good at that!  These are skills and habits that I developed over 40 years of paying close attention.  However, that kind of attention takes A LOT of energy.  And my skills were probably not nearly as accurate as I wanted to believe.

After

It’s like I’m working with a new set of parameters.  My old baseline is gone.  I think I started by trying to make an invalid comparison to before implant and after.  Hearing post-implant is a different way of hearing.  It’s been so long that I’ve missed large chunks of sound frequencies that it doesn’t seem “normal” to me.  That’s because my normal wasn’t normal.  So part of my adjustment is to redefine what my normal is and understand that comparisons to before don’t always make a lot of sense.

Today, I am hearing more sounds.  Lots of high frequency sounds and environmental sounds that I haven’t heard in a long, long time or perhaps ever.  This is cool.  It’s also an adjustment process.  Unlike a hearing people, I have to learn to disregard certain environmental and background sounds.  Right now I’m still paying attention to too much and that’s tiring.

Also, early in the CI experience I’m hearing a lot more but not always understanding a lot more.  Again, it’s part of the learning process.  I need to train my ear to recognize the new sounds I’m hearing.  One of the toughest things for me is learning to distinguish consonants.  My new high frequencies allow me to hear consonants.  Now I hear them but was that a ‘t’ or a ‘d’?  Why does the letter ‘n’ seem to disappear?  Weird and tricky stuff.

I’m doing very well as far as implant recipients go, regarding overall speech comprehension.  I have been able to understand people pretty much from the get go with minimal robotic or mickey mouse sounding voices.  This isn’t the case for everyone although all recipients I’ve met get there eventually.  As far as comprehension goes, it’s hard to say how much my lip reading skills are assisting me versus hearing things more accurately.

The journey continues…

At this point I’m noticing things seem less jarringly loud. I’m also working on aural rehab, such as books on tape and listening programs with practice exercises.

I’m curious to see what becomes easier over time.  It’s hard to self-evaluate in an objective way.  One thing I’m realizing that I need to trust my new ear more.

I’ve heard other implant users tell stories about improvement that their friends or family point out to them.  Comments like, “You know, you just heard that guy behind you.  You would not have been able to do that before.”  I’ve drawn an analogy to going to the gym.  You don’t get big muscles in one visit.  It takes time, consistent work and motivation to develop new habits.  Sigh… I mean Yes! I will do it!