Activation no. 2, first impression

Finally came the long awaited activation day for my second Cochlea Implant. Did go by myself this time, knew a lot about what was going to happen and so forth.

ear-with-sound-waveSo, first we went through the the initial single electrode check and level determination (in order to avoid a cataclysmic neural shock to the neurotransmitters after 3 years of total silence (except the tinnitus, that is).

Then we turned on, and after carefully increasing the volume, I could hear the audie’s voice, and this time it was somewhat intelligible! Right out of the box I could understand the sounds getting into my brain from the second implant. The difference from activation of CI#1 to this one, was like night and day. CI#1 was Morse code, chaos and utterly hellish to listen to. CI#2 is beautiful and crisp clear. Painfully clear.

As soon as the first setup was done, it was out into the world to test and work the volume up a bit. I turned my CI #1 completely off. First sounds I could not identify visually, all though they sounded a lot like someone walking with high heels (maybe from somewhere I couldn’t see).

I went into a café and sat down with a coffee and a bite. Turning up a bit more, and the sounds of tableware and glasses being shuffled about in the kitchen were almost unbearable. The sounds made my head spin, seriously. The fun part is that it feels like it makes my head spin the OTHER way, compared to CI#1. I hope this is some kind of sign that CI#1 and CI#2 somehow will balance each other!

Then I wanted to kind of be in the moment, and I picked up my newspaper. I had just turned on CI#1 in order to try to minimize the head spin feeling. stereoI couldn’t help myself grinning like a fool, because now I heard the rustle of the paper going from my right side over to the left, with PERFECT clarity! Yes, I grinned and almost laughed at the sound of turning the newspaper page! Smilefjes med åpen munn That’s when I really had my first bionic stereo CI-moment. The moment I had been looking forward to for three years! It was perfect!

So after celebrating a bit with friends on Facebook, I had to go back to do another programming round.

Leaving the hospital, I ran into an acquaintance, Kate, who is seriously researching how to best live and cope with hearing loss in society. (use Google translate if you have a hard time reading Norwegian Smilefjes ) She told me I was beaming, looking very happy, and I guess I was Smilefjes  Walking on clouds and being very happy, indeed.

crowFurther up the street, I heard a crow caw, but could not decide direction. But the sound came from both sides, like in a dream! A few seconds later a taxi drove by, and this time I held my head still, and most certainly got the sound passing form one ear to the other! It brought tears to my eyes. Oh JOY!

Being this happy for stereophonic sound tells me that man was made with two ears for a reason! Giving deaf people only one CI for economic reasons is just plain WRONG. It’s beyond my comprehension that someone can think that one ear might be sufficient. It ISN’T!

Coming home, I could hear my wife and 4 month old daughter for the first time with this new ear. And they sound beautiful! Especially Joanna’s baby conversation was like music Smilefjes 

This will be a good process. Given the experiences I had with CI#1, and the challenges I faced and conquered, this will be a victory parade down Avenue des Champs-Élysées Smilefjes som blunker

Stereophonic at last!!!

Life is getting easier

transorbital_bilateralCII feel less commitment to this blog now, and for that I’m sorry. But as things develop in regards to the CI, so does my life. The hearing falls slowly into place, and I can start to concentrate on other more “mundane” (but still very important!) things :-)  This is a good thing for me, not so good thing for this blog. But, as CI 2 comes through, I’m sure I will get a need to make more blog material for myself and the world to ponder upon 🙂 More will surely follow soon enough.

It’s now around the 8 months post-activation milestone. The 6 month adjustment gave me a small bump into distress and psychological reactions, mostly due to the fact that I raised the overall sound-levels, AND increased the IDR from 60 to 70 %. IDR stands for Input Dynamic Range, and determines how much of the full sound spectrum I get delivered. 100 is a full spectrum, while 50 probably has 25% cut of from both the low and high frequencies.

(not totally sure about those last numbers concerning IDR, but I believe it to be the case. Please correct me if I’m wrong.)

I still struggle in noisy environments (looking SO forward to getting bilateral again! Hence the x-ray picture :-)  ), but now utilizes a preprogrammed setting that uses IDR 50%, which cuts down some of the high consonants from speech, BUT reduces “destructive noise” (in terms of speech comprehension) even more, making it possible for me to last a little bit longer in a multi social context (ie. larger groups of people).

Despite the aid of the IDR at 50%, I get really tired. I need one or two days of recovery after a 4 hour big-family session. This is a big improvement from before, mind you! But it’s evident that I still need more time to adjust and learn how to cope in various situations.

Tinnitus stress management conclusion: better!

lake The tinnitus stress management course I attended really has paid off! I recommend it to everyone with hearing problems, as having a bad hearing causes so much distress and problems.

For me it has led to a better life. Just as all the other small things I have improved/changed in my life, stress management has lessened some of the burden on me being deaf and enduring the torments of tinnitus.

Tinnitus now gets less attention by myself. The techniques I learned has somehow taught me to primarily prevent tinnitus to get started due to high levels of stress and fatigue, and also to stop it and react in a positive way when it rears its ugly head. It’s a mere notion of that the tinnitus is sounding, and I utilize the relaxation technique and think about something else. I’m so happy that the mini-course gave me such great effect. I feel like a better and calmer person too.

It was some effort invested, but totally worth it, take it from me!

🙂

What happened with the “recruitment”?

I got this question from a reader (Candy):

Kim’s post send me here, and I really like your post.  What gets me amazed is that I do have that problem some of the time and I never knew there was a word for it!  😉
Do you have implants now? and, if so, does it helps get rid of recruitment?  If it does, then it would be a good reason for me to get it and stop procrastinating!  😉

Instead of answering Candy directly, I think everybody who has read my original post about the phenomenon called “recruitment”, also deserves to see my response:

Read the rest of this entry »

Goodbye old life – Hello new life! (?)

Wow… I’m still here!

neuronsMore than 4 long years after the neurons (picture on the left) in my brain formed the thought of getting a Cochlear Implant for the first time, I’m finally here. At the doorstep of a new reality. A new perception of the world of sounds promising improved social interaction and perhaps even music.

Back in 2005 my son had his first day at school, Microsoft’s Windows Vista was still to be officially launched, Pope John Paul II had just died and Pope Benedict XVI became his successor, the superjumbo Airbus A380 had it’s maiden flight from Toulouse, the Kuwaiti women were granted the right to vote (on my birthday), Lance Armstrong wins his 7th (and so far the last) Tour de France and the hurricane Katrina wreaks havoc in the US city of New Orleans and surrounding areas.

Now, in 2009, my son is in 4th grade (!), has a new set of front teeth and has grown almost 50 cm, Windows 7 is just around the corner, Barack Obama is the new US President, Lance Armstrong made a comeback to Tour de France and the world is desperately trying to shake off the effects of the worst global financial recession since 1930.

This time of waiting for CI has been hard and exhausting. I want to direct a very criticizing finger at Norwegian health authorities (forget about party-lines, this goes for all politicians and all policymakers!):

norsk_flagg_stang It is de-motivating, devastating and beyond understanding to have to wait 4 years for a life-improving sense enhancing procedure such as the Cochlear Implant! It is counter effective, both in terms of pure financials for the society and in human capital. Instead of returning quickly to a productive life and continuing as a healthy member of the taxpayers force, individuals such as myself are forced into years of life suspending professional and personal social life hibernation. It is such a place where the personal price is high, and the society’s costs are growing into grotesque proportions!

I have a 3 point petition:

1. Sense improving technology such as the Cochlear Implants is the future, embrace it! Build and strengthen national CI competence right now!

2. Stop being afraid it costs too much! In the end it costs much more to stall, let alone not doing it! It’s plain common sense! It is a CHEAP investment into human capital! Build for the future!

3. Grant all who might benefit from it, bilateral CI! In return I can promise you happier and much more productive deaf citizens of Norway!

I can’t say that the 4 years that has passed since my brain created the first thoughts about putting a Cochlear Implant into my head has been boring, far from it. They have been eventful!

research-sanity-1 Related to my condition; I went through 2 years of psychological therapy, countless visits at the hospital asking about when I could get the operation done (nagging), I said goodbye to my beloved music, I went through many life changing decisions, all in order to survive and maintain a life in order to be able to father my son the best I could and to remain sane, healthy and alive.

Yes, it’s been the fight of my lifetime so far! I had many small and big defeats, such as the day I admitted to myself that I was no longer fit for the A4 working life, or when I had to accept that I had to wait 4 years for that life-changing all-important cochlear implant…

But it’s a lot nicer to count my victories 🙂 I remained on my feet, I did not succumb to self-pity, I have been a somewhat decent father to my beloved son, I actively worked my brain from a medium depression state into a better functioning state with a more realistic view of myself, the world around me and it’s expectations from me. I made my life better, in spite of the borderline progressive deafness and it’s challenges. I lived my life to the maximum of my capabilities. I started my own company (in order for me to be able to work as much as I could/can). I got closer to my family and I found a very promising life-partner! I did not waste my time :-)  Sometimes challenges bring out the best in you.

At last, but not least; this blog has been my salvation, brainchild, hope and joy. I started ci4me2007 in the last weeks of 2006. I had such high hopes for it to become the year that I would finally get my CI. Now, 157 (counting this one) posts later, with 45.000 accumulated views (that means 45.000 opened pages), it’s almost nostalgic to look back. I wonder what will become of this blog now.

doorsA new chapter in my life begins the day after tomorrow. I owe the ones that are next in line for CI, wherever they might be, to be able to access my experiences both good and bad, just as I have been able to read about Michael Chorost (read his book!), Jennifer, Abbie, Sam, Jeff, and many, many others, and more recently; Kate, Movale, CIborg.

It’s time to walk through that door of perception, and shape my new world, and my life along with it. Wish me luck!

See you on the other side! 😀

In the Queue of my life, no 44 – (Part 2 of 7)

article continues…

Psychological burden

Ulf is a part time dad for an 8 year old boy.
– It is demanding for me as near deaf to be single dad for an active toddler which is very communicative. For me it developed in an unhealthy direction where I problematized the whole situation and got psychological problems. I “buried” myself in problems and developed insomnia-issues.
– Sleeping disorders are often closely related to one’s general well being, he says. He his grateful for the existence of “Center for hearing and psychological health” at Gaustad in Oslo. This center saved me, he says.

Has a dream

The big dream is to get CI on both ears.
– Next step is that I hope to be able to realize a career and get up someplace where I can make a difference.

I feel I have so much inside me and that I have a good grasp of the world around me. I believe I could make an impact someplace. In order to accomplish such a dream, I am totally dependant of the tool an advanced CI-implant represents, he says.
– In regards to my relationship to my 8 year old son, it is a dream that I have more surplus in order to stimulate him further in the direction of knowledge and activities. I simply hope I can become a better father, he says.

He fears that the dream of simultaneous bilateral CI remains just that; a dream. Today there is only children that automatically has a right to get bilateral CI. For economic reasons most adults only receive unilateral CI and the burden of proof is on him, in order to prove that he will benefit better from two rather than one CI. This provokes the 36-year old.
– If you develop bad eyesight on both eyes, would you be happy to have to document that you need glasses on both eyes? – It’s just plain outrageous, Ulf states.

Research Supporting Bilateral Cochlear Implantation

Someone heard me! 🙂

And I got hold of what I needed! A 5 pages long list of research that supports the notion that everybody who needs it should have bilateral CI!

I got in contact with Amy Brown from the Let Them Hear Foundation Advocacy program. She provided me with a huge list called “Research Supporting Bilateral Cochlear Implantation“. It is updated and very much valid for the ongoing battle we have these days in Norway for allowing adults get their CI number two on an as needed basis.

Amy wrote me the following, which I happily honor, given the fact that she gave me the precious list in the first place 🙂
Thanks to Amy and Sheri Byrne from the Let Them Hear Foundation.

Hi Ulf,
Thank you for your question.  This is a proprietary LTHF Advocacy Program work document.  We use it specifically to support our appeals.  I am happy to share it with individuals such as yourself as needed, but it is not intended for public consumption.  We continually update and revise this list to include the latest most compelling peer reviewed medical literature.  It is meant always to be a work in transition. If you know of anyone who needs access to this information, you are welcome to share my contact information with them.  I will follow-up immediately.

Amy Henderson Brown, J.D.
Director
Let Them Hear Foundation Advocacy Program
149 Commonwealth Drive
Suite 1014
Menlo Park, CA 94025

If anyone need this information, I’d be happy to provide her e-mail address. All you have to do is ask. I won’t publish it here because that could lead to her getting more e-mail spam. Better to keep it personal.

Jennifer re-activates her first CI today – true bilateral at last?

My fellow CI-blogger, Jennifer activates her re-implanted 1st CI today. I’m so excited for her, and quite optimistic. All signs points to a successful activation today. (I can afford to get my hopes way up for her 😉   ). She really deserves to luck out, since her first attempt was more or less a disaster, and she has had discomfort on that ear for almost TWO years!

Visit her blog and wish her good luck today! Or check out her initial reports if you saw this a little late  🙂

My best wishes for you, Jennifer!!!