Convention on the Rights of Persons with Disabilities

 

Link directly to the UN charter

For my norwegian readers

2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

4,329 films were submitted to the 2012 Cannes Film Festival. This blog had 16,000 views in 2012. If each view were a film, this blog would power 4 Film Festivals

Click here to see the complete report.

The tinnitus I hear – all the time

I just came across some sound-samples that simulate my own tinnitus. I wanted to share them, so perhaps people around me better understand why I am tired or unable to participate in social activities.

1. This is similar to the "quiet" tinnitus that I have all the time 24/7 
   (I can barely hear this sounds when I listen to it, so I guess it’s pretty close to my own)
2. Also barely audible to me, meaning it’s similar to my own
3. Whistling sound
4. This one is totally inaudible to me, meaning that I have this as tinnitus for sure…
5. Screeching
6. I also have “white noise” kind of tinnitus, but all the examples I have found are too high i frequency, so “white noise” with deeper frequency is another example (you just hafve to imagine the sound)
7. All these above combined, and you might have a sense of the cacophony that is in my head at all times…

The only time I don’t have tinnitus, is when I am so preoccupied with something else that I “forget” it, or when I sleep.

Tinnitus get’s worse (more loud and more “present”, harder to ignore) when I have slept bad, or when I am getting more tired or sick like with a flu.

Why do I have tinnitus, even with CI’s?

I have been thinking back, trying to get a clue as to the reason why my CI-operations didn’t “solve” or remedy the tinnitus problem, and have worked out this theory:

From around 2000 and onward, I cranked up the sound volume on my hearing aids every time I had a control or new hearing aid or simply needed adjustments. The result of this cranking up? I walked around with an aproximate loudness of 100 dB to 120 dB and more for 10 years! This might have resulted in the development of recruitment (norsk), hyperacusis (norsk), even more hearingloss (aka more rapidly deterioriating hearing) and tinnitus.

Furthermore my theory is that all these years of unusual loud sounds coming from my hearing aid, resulted in my brain (the parts receiving and processing the electric nerveimpulses of sound) underwent some structural change or that my sensorineural system developed some kind of damage. I am not a neurologist or expert in any medical field, so these are a laymans theories…

I feel that the health services in my country failed in providing adequate help to me in a reasonable time-frame. Maybe I could have been without the tinnitus, had I been helped 5 years earlier… I’m not bitter, I just want others to learn from what happend to me. And to prevent others to have to deal with the same things, if it’s avoidable…

Going deaf – twice

In many ways, the process I have been in after the second operation has been about accepting that I am nowin fact deaf. Yes, I can hear with the CI, but I can’t use them (to hear) all day. In fact, two – three hours per day is my present maximum dose of sound. I have to learn to live a large part of my life as a deaf person. Also it’s not just me, but my family has to learn to have a deaf person around them too.

Learning sign-language at Ål – School for deaf

My wife has identified the need for us all to learn sign-language. I have been too stubborn to realize it or initiate it. At the same time I have always been open to it, thinking that refuting something that might actually help, just because I don’t want to be deaf, is a counterproductive thing to do. So I am open to it, and we actually went to our first week of school, for the whole family, to learn sign language just a few weeks ago.

It was an eyeopening experience, and we will learn to sign in our family.

See «Hearing… but not as you know it» on YouTube

Hearing Loss Linked to Three-Fold Risk of Falling – 02/27/2012

http://m.hopkinsmedicine.org/news/media/releases/hearing_loss_linked_to_three_fold_risk_of_falling

More bass, more!

Was at appointment at hospital today. Time to give my Bionic hearing some sound adjustments.
Before I arrived at appointment I thought that there was no need to adjust anything. My speech comprehension is good, and the left ear is coming along nicely, slowly catching up with my right, steadily getting better and better “resolution”.
At first we discussed other related issues concerning my general wellbeing, and eventually, as I had time to think, or dawned on me: what is my biggest problem these says? Answer: the voice of my father-in-law and very thin women/Childrens voices.
Since I can’t improve both aspects at the same time, the choice fell on my father-in-law.
We boosted the bass, given that his voice is a deep one. I used my new smartphone to play a Rolling Stones classic to determine the right level of the bass boost. “I can’t get no satisfaction” is a simplistic rock’n roll tune that has song that is easy to catch. Therefore it is a good reference to use while determining the right amount of adjustment.
We ended up with doing the same adjustment on both sides, thus keeping both sides’ identically programmed.
I must say I’m surprised at how much better all sounds sound now! Even after all this time, there’s room for big improvements with just small adjustments!
I can’t wait to hear my father-in-law’s voice again, to see of the adjustments I made will make a difference. Luckily we’re bound to spend some time with my in-laws this summer.
Will my daughter’s crying be easier or harder to tolerate? Will my wife’s voice be more tolerable for me when I’m at my worst condition (tired, worn out, tinnitus and migraine raging).
And what about the music? I have lately felt that the music sounded a little anemic. This might be just what the doctor ordered 

Senses under scrutiny – an intermediary update

I have a future post in mind, not yet mature, concerning the effect of my second implant on tinnitus. Right now I have another issue that needs (and gets) medical attention. I have in earlier posts explained about suspicions about migraine aura. In this regard I have been to a neurology specialist, and the first session brought these preliminary conclusions:

My balance is fine (as I said in earlier post, the problem with my balance is mostly in my head, i.e. due to my brains way of coping with the various sensory inputs, such as sounds from second implant.) This will normalize eventually. Relief

My nervous system is fine, the specialist could not find any indications to any damages nor diseases. Also big relief.

However, she wants to pursue a hypothesis: that my vision – sensory input, due to my deafness and general health history, somehow has turned oversensitive because the vision compensated for less and less audio input over the years, that is a pretty common and well known phenomenon (lip reading and similar compensating techniques). Meaning that my eyesight compensated for loss of hearing, thus eventually generating too strong vision-sensory input for my brain. The theory makes some sense.

I would also add the tinnitus as a similarity to this theory, I feel as if they correlate, if not 100%, at least partially. I often experience more tinnitus when I notice migraine tendencies and vice versa.

Also, the tinnitus developed (the debilitating stage) late on in my deafness history, and I think that was mainly due to lack of sensory input. My brain “created” tinnitus because it amplified the (more or less empty) signal to an extent that it also picks up the “white noise”, i.e. normal “background” neuron activity (very much like static noise on the FM band, or natural radiation, which will show up on any Geiger-counter). Now my brain does not know how to turn off that monster it created.

The neurology specialist want to take some measurements, i.e. EEG, and another one measuring the neuron activity upon retinal impulses (will add the proper name of that these here alter on)

After that, she might prescribe me with a low dosage of some kind of anti epileptic drug. That kind of makes sense too; in order to suppress some of the worst overload of the sensory input, this medication might just do that.

BUT: I await to see exactly what drug she will suggest, and what it’s side effects are. And based upon that, plus the dosage, I will make a decision. Having a history with depression, any medication with a side effect that might trigger depression, will not be a favorite in my book…

But then again, if that medication would help me recover from the tinnitus and/or migraine, it would be a big plus for my general health condition…

The tests will be taken soon, and meanwhile I try to get my newly implanted ear up to par with the first ear.

So far I have not had the strength to endure a longer period of time with just the new ear. I have both on at the same time, that is all right and very pleasing, since I notice all the time an improvement in general ability to pick up and understand speech. A plus is that I need a little less effort compared to before. So hopefully, over time, that will also make my overall energy levels go from nearly depleted to satisfactorily filled.

Regarding the ability to stand noise, it’s way better with two CI’s compared to one. Also, the tinnitus is more/better subdued by external sound with two input channels (two ears)  This is something I will write more about at a later time, when my new ear has gotten some more training, and I feel like a can draw some conclusions from the new experience…

Abridged CI / health history

Date	Event
May 1972	Born
1975	Wears hearing aids for the first time
1995	Drops out from higher education, due to hearing
2001	Looses job, gets divorced
Early 2006	First thought of getting CI
Oct. 2006	Suffering full burnout syndrome collapse
28.12.2006	Starting ci4me2007.wordpress.com blog
Late 2006	My GP sends me to specialist as CI candidate
Late 2006	Begins cognitive therapy to counter depression
23.01.2007	Specialist gives me status as CI candidate
14.05.2007	Joins Facebook
08.06.2007	Tinnitus begins to get seriously bad
14.09.2007	Complains about fatigue and eye problems
05.11.2077	Mourns the loss of music
06.11.2007	First notion of migraine
22.01.2008	Self-diagnose myself with “recruitment”
26.03.2009	Rikshospitalet gives me date for pre-trial
21.07.2009	First CI surgery, right ear
28.08.2009	Tinnitus worse, explosive terrorizing LOUD
07.09.2009	First CI activation, right ear
2010	Health improves somewhat
18.01.2012	Second CI surgery, left ear
27.02.2012	Second CI activation, right ear
Sad fact:	It took 6 years for the public health service in Norway to give me both CIs.
Sad fact II:	I could have been diagnosed deaf in 2004!

Bridge over troubled waters – 6th day CI activation

Getting stereo again is just great, I kid you not. I have been walking on clouds this week, despite some troubles.  (read more below picture)

 

 

Sound is, even though my newfound ear is very weak and undeveloped, much, much more gratifying to absorb. It is as if the sound world just came alive. From being flat, dull, monophonic, dead, boring and lacking essential information; it became vibrant, alive, all-covering and moving (to my brain) and complete.

Music is better, lyrics pop out much better (no matter how hard I tried with one ear, some things where not possible to grasp auditory, even though I knew what was being sung), vibrations in music, like harmonies are back in force. In short, music is alive and moving again.

So, get this: I love what is happening, and I can’t wait for the time ahead; I know I still have a lot of good stuff coming!

Now, that’s the white clouds, now over to the gray rainclouds…

Challenge 1:  Overwhelmed and family life

My brain is simply overwhelmed by this. Day one to three was all about amping up the processor according to what my left side hearing nerves and brain could handle (without it becoming painful). On day three the mapping (all 16 frequencies per electrode) was on par with the right ear!

That is nothing but astonishing to me! The right ear (in fact, it is the brain that do this work) used maybe 2 years getting to that level, and a lot of trying and erring in terms of settings in the software. A lot of parameters concerning both resistance (in the fabric of my biological tissues, perhaps even buildup of some kind of patina on the electrodes), audio-physics (amplitude; the length of waves) and Clear Voice™.

But the overwhelming issue (Trouble 1) has a price: I am somewhat fatigued from before, with very little reserve to go on, and now it’s right down into the basement again. I have been there so much this winter, and frankly I’m getting very sick of it.

I have a family that also has to live with this; 4 month toddler with water in the middle ear (somewhat painful at times, she wakes up screaming her head off), and my dear wife has so far taken 99% of the burden of this. (image to the left is not of my daughter)

It’s so unfair to her! I can’t support her (take my share of the “workload”), and take care of Joanna the way I wish I could. Along with this issue, comes a strain on our relationship, mental challenges and so on. But, we’re coping, learning, and getting more and more secure with each other. It is in hardship a relationship is tested…

Having said that, we manage, and Joanna is getting medical attention. (we had her hearing tested, and she was then diagnosed with water in the middle ear in her left ear (otitis media))… We just have to wait and see what can be done. I really don’t want to puncture her eardrum….

Challenge 2: Balance

Light headedness and balance issues. With the new new sound, my balance is set for another test-drive. Sound input is clearly affecting my balance. It feels as if my brain is swimming inside my skull. I also have a feeling of difficulty of fixating my eyes (it only feels like that, I can read and drive and play computer games just fine). It is weird, because getting this new sound is a satisfying experience, at the same time it feels confusing to ALL my senses.

I guess the three years of complete silence on my left ear made the nerves rather raw, and now I’m dancing on these raw nerves!

Challenge 3: Vision

Vision affected. As I mentioned in Trouble 2; feels like trouble fixating (but not real). It’s all in my mind, but it certainly makes me tired. This problem is particularly felt when I move my head in any way. Balance is closely connected to vision.

Challenge 4: Fatigue

All these things combined takes it toll. OK, I’m only on day 6 of this new era of my (our) life. Give it time and it will get better, of course. But the idea of putting this into the blog is to share experiences and be a little part of the experience and data-bank internet is… I hope writing this gives other people (my family, friends, health authorities, my government and everybody else who might be interested) better insight. And in turn are able to make better decisions in the future.

The politics in Norway

It is my opinion that todays political handling of deaf-operations in Norway is poor, substandard and backwards. A lot can be done better, and the best part is that making better decisions will actually save the society a LOT of money in the future!

But in order to do that, we have to get knowledge and insight across. This is my humble attempt to do just that…

How does it sound on my new ear?

Very much like my first ear did in the beginning. It’s very light, helium-ish. And music  and speech sounds are very noisy by itself (isolated). Robotic is the best description I can make.

It’s strange, because along with my other ear, noise isn’t so tiring as it was with only one ear… And sounds sound better with both ears working together. Even when this new ear is still “fresh”, infantile and by itself almost useless.

But something is different, and I guess it’s the brains ability to interpret the sounds. This interpretation is better now, since my brain has already learned one time from my first CI. I can actually understand speech, although I have to utilize my lip reading skills to pull that off I know that given time, it will improve, and I’m not at all stressed about that

How do I train this new ear?

Not much conscious training yet. I’m just trying to find my level of comfort, and to find my balance, both in my body (head) as well as in my energy levels.

I have them on as much as possible, but take it off when I need a break. Volume has been turned down on both, and I understand speech better, even then, so that is very much a promising sign to me.

When things get better, I will start working on this new ear by itself, in order to get it faster up to speed with the first ear.

How am I doing overall?

I have had one good day so far, where I felt better, in terms of energy and not being overwhelmed. That was yesterday. I then did a lot of stuff (you know, things are waiting for me ), and have the feeling of having to pay for it today But that is a good notion, thinking of it, I had my first OK day yesterday (being bilateral, that is)

Tinnitus is still there. And on my new ear it is shouting through a new channel when I turn off the sound. But it was like that with first ear too, and it calmed down. While I have sound on, with both ears, tinnitus is much less of an issue now. The stereo-sound is masking the tinnitus fairly well.

If I get tired or agitated, it comes back full force almost instantly.

Some pain in both ears from time to time. But the pains are mild, more like a reminder of how the pain from surgery used to be. Could it be some kind of reverse psychosomatic thing?

Stress level is fairly high, given the fact that I stress with being weak and not able to support my family the way I wish I could. I use some mental energy to tell myself that it’s not something I can do something about, really, and don’t feel guilty about it. Emotions and logic don’t always follow… But I have made myself my own therapist now. I know the mental pitfalls, and I know the right questions, and I get the right answers rather quick…

One for the philosophical corner…

I ask myself this question these days: am I very good at being sick and fatigued? Can that be a pitfall in itself? By being good at coping with hardships, have I forgotten how to handle myself and life when things go well?

Bridge over troubled waters?

The bridge? She is my wife   She is patiently awaiting my return to the “living”, taking good care of our kids and us all.

Mette, you have my eternal gratitude and outmost respect for the way you have overcome the hard nights and busy days with me going on 20-30% engine!!! I love you!

New insights, new perspectives.

 

In terms of becoming deaf, I have now been working for some time on becoming a hearing person again. Mostly it has been about taking my life back, but at the same time, my auditory senses are getting better and more used to the new situation. As becoming deaf was a traumatic, frustrating, depressing and exhausting experience, starting to hear again is a different story. Of course, many of the side-effects of becoming deaf are not gone by far, but they become more and more manageable. And that leads to different perspectives and new insights.

I just published the last (previous) post on this blog, adding pictures, links and fixing layout. The link to the Wiki-article about Migraine Aura also contains a list of symptoms, whic I found extremely interesting. In fact, it might yield some clues to my condition that I did not know before.

In an overall sense, it might seem likely that a condtion as migraine might have been mistaken as symptoms of becoming deaf for several years. My mother has migraine, so I am genetically predisposed. But now, with the right ear CI starting to function as a normal ear, it’s perhaps time to investigate further… That process begins here:

Self-diagnosis regarding the Migraine Aura:

This list is taken (copied) from this source, and are the symptoms I experience:
(the other symptoms have been removed)

Visual changes

• Distortions in the size or shape of objects
• Vibrating visual field
• Tunnel vision

• Kaleidoscope effects on visual field
• Heightened sensitivity to light

Auditory changes

• Hearing voices or sounds that do not exist: true auditory hallucinations
• Modification of voices or sounds in the environment: buzzing, tremolo, amplitude modulation or other modulations
• Heightened sensitivity to hearing
• Someone speaking at a level and normal tone sounds like they are shouting loudly

Other sensations

• Heightened sensitivity to smell
• Feelings of déjà vu or confusion
• Feeling as if one has to eat or go to the bathroom
• Feeling as if you are getting warmer or overheating
• Sudden Perspiration
• Weakness, unsteadiness
• Being unable to understand or comprehend spoken words during and after the aura
• Temporary amnesia, such as forgetting how to do tasks you have been doing for years

This list/text is from a Wiki article about Migraine:

Prodrome

Prodromal symptoms occur in 40–60% of those with migraines. This phase may consist of altered mood, irritability, depression or euphoria, fatigue, yawning, excessive sleepiness, craving for certain food (e.g. chocolate), stiff muscles (especially in the neck), dizziness, hot ears, constipation or diarrhea, increased or decreased urination, and other visceral symptoms.^[15] These symptoms usually precede the headache phase of the migraine attack by several hours or days, and experience teaches the patient or observant family how to detect a migraine attack is near.

Aura

For the 20–30%^[16][17] of migraine sufferers who experience migraine with aura, this aura comprises focal neurological phenomena that precede or accompany the attack. They appear gradually over five to 20 minutes and generally last fewer than 60 minutes. The headache phase of the migraine attack usually begins within 60 minutes of the end of the aura phase, but it is sometimes delayed up to several hours, and it can be missing entirely (see silent migraine). The pain may also begin before the aura has completely subsided. Symptoms of migraine aura can be sensory or motor in nature.^[18]

Visual aura is the most common of the neurological events, and can occur without any headache. There is a disturbance of vision consisting often of unformed flashes of white and/or black or rarely of multicolored lights (photopsia) or formations of dazzling zigzag lines (scintillating scotoma, often arranged like the battlements of a castle, hence the alternative terms "fortification spectra" or "teichopsia"^[19]). Some patients complain of blurred or shimmering or cloudy vision, as though they were looking at an area above a heated surface, looking through thick or smoked glass, or, in some cases, tunnel vision and hemianopsia.

The somatosensory aura of migraine may consist of digitolingual or cheiro-oral paresthesias, a feeling of pins-and-needles experienced in the hand and arm, as well as in the nose-mouth area on the same side. The paresthesia may migrate up the arm and then extend to involve the face, lips and tongue.

Other symptoms of the aura phase can include auditory, gustatory or olfactory hallucinations, temporary dysphasia, vertigo, tingling or numbness of the face and extremities, and hypersensitivity to touch.

The really intereseting part, for me, is the one pertaining Auditory changes. This enters the territory of tinnitus, and working my way through this list, I start to look forward to seeing an expert neurologist. I already have been to an eye expert, which in turn forwarded me to Rikshospitalet and an expert in neurology for further examination. Receival of transfer has been confirmed, now I just wait for a proper appointment. Who knows when that will be. I’m not holding my breath, and besides, I have other things on my schedule right now

 

Becoming bilateral!

On january 18th I will receive my second implant, and it will be interesting to see if that procedure will have any impact on any of the conditons I have written about today.

I expect the sound to be easier to work with, of course. Getting stereo again will be sweet  
Maybe (hopefully) the effect of tinnitus will lessen, since my implanted right ear was the worst one, also in terms of tinnitus, before the first surgery, and the left ear has been resting for 2 years now. The left ear might very well become my best CI-ear.

I still hear thumps, firecrackers, airbombs (new years eve fresh in mind ) jetplanes, bass from loud music and trucks on my left ear, so the auditory nerve is very much intact.

Will be a whole new process, of course, with the benfit of the right ear having paved the way for the altered sound signatures of all sounds around me in everyday life. Also the stereo will add the benefit of my brains capability to calculate the location and distance of any given sound or voice, in all kinds of sound environments…

Really looking forward to that process, and most of all, getting to a point where I can actually rest comfortabley on my auditory sense instead of working hard on it and / or compensate with lip-reading, mind-reading, guessing etc.

Going from a fight of survival to a process of healing

Is this the transition from fighting for my life, my sanity, health and hearing, to actually start to heal? It might very well be the case. It feels like the previous oncoming deafness, the struggle to get proper help and the road back finally is starting to pay off. This of course, gives me a tremendous boost in morale, and will affect not only myself, but my whole family and everyone else I love and care for.

I have thought about the day I can work on honing my social skills, and to be with people without having to resort to coping mechanisms like withdrawal from pleasant/interesting company (self-isolating), turning off sound, “tuning out” (looking the other way, seemingly uninterested) etc. It will maybe have to be a conscious effort on my part, to change my (socially negative, but (previously) personally essential) coping habits in order to adapt to the new reality of having two working ears again.

The human body, including the human psyche, is a tremendously complex biological machine, and I am certain that there is a lot more improvement in store for me in my life and in my health, as I now await the final phase of my return to the hearing world (100%).

I can’t wait

A new chapter, at last…

Been a very long pause in my blogging. Has been a very eventful year (actually it’s more like 6 months ) since my last blog-entry was posted. I write this on my mobile phone, hence the shortness of text and expressions.

Here are the highlights:

• Unilateral hearing is pretty good.
• Downside is tinnitus and problem with speech in noise + very tired.
• I might have some kind of migraine, could be related to my struggle with getting sound «good». This winter has been bad. It is being pursued and investigated. Migraine aura, something like the picture shows.
• Got engaged with my girlfriend.
• Became a father to beautiful Joanna.
• Got married

I focused on taking my life back in terms of living it and creating a family together with my wife.

This period has led to this moment, where I’m happy to announce that I will finally become bilateral on the 18th of January 2012!

I look forward to it, and expect life to become little easier, in terms of using energy on understanding speech. How long time it will take, no one knows. What level of sound comfort and skill I will reach, remains to be seen.

I am anxious to find out if it will improve my general health to the extent that I will be able to partake in work-life again. As of now, I’m on the limit with family life including two boys, an infant and wife.

Further reports will follow, documenting this final ascent into bilateral CI heaven

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Your head hurts, but you don’t bleed. Status medio 2011.

Many things to write now. First of all, I kept my promise to myself to let go a little of this whole hearing/CI thing in my thoughts. That is reflected in the lack of postings herein lately. It has been successful, I spend less time and effort fighting the “inevitable”. My energy has been aimed more elsewhere. The strategy to start focusing on other aspects of life has certainly changed things for yours truly. To the better, I feel. The enormous psychological burden of focusing on things wrong or negative too much is a battle with oneself. There are many ways out of that quagmire. People are different, and has to find each their own path. But it is important for me to stress this point; it is entirely possible to CHOOSE just how much you need to deal with the hard parts. I chose to try and process them to death by confronting them head on. (after I unsuccessfully tried to ignore them) But, the sooner you reach the point where you understand that you should move on, and try to get it past you, tvers better.
Acceptance of situation, is an important step in the well known grieving process. Insert link here…

What happened to me when I reached this point was that I found myself in a scary void. Even despite all the other good things in my life, it (the hearing and CI thing) had taken up so much space in my head that it felt empty trying to purge it.

I went to psychological counseling again, and again I found invaluable help. I feel I’m pretty much out of the problems and in control of my emotions again.

So, after I stared into the abyss and survived, the void had to be filled with other things…

Then find focus elsewhere; I engaged this beautiful woman, started living my life with her, creating US, a family unit. Now I found resources within myself to work better with her, and also to get a hold of a bigger issue that I had put off for too long. This personal “big” issue was put aside in a subconscious way, but in retrospect I see it more clearly. I only wish I could have explained it better to my fiancee at that time. Of course she worried about if I was denying the whole thing. (We both agreed early on it was too big to ignore.) I have to give her a huge credit for trusting me and us, and for her to actually dare to “wait it out”. I know it was super-difficult, and you didn’t waver. Thank you darling! And thank you for kicking my ass exactly when I needed it. I love you so much!

Experiences has been harvested, both good and bad, as it should be in normal life.
The family situation has been a very rewarding experience. It has proven to me what I always have believed; if you stay true to yourself and your values long and hard enough, happiness will follow.

Your head hurts but you can’t bleed…

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Michael Chorost explains the concept of Cochlear Implants.

The Author of “Rebuilt”, Michael Chorost was recently captured in a video interview published on YouTube. I found his explanations so elegantly put, that they should be viewed by everyone interested. A lot of information, but at the same time, very elegantly put and easily understandable.

Hope you enjoy these: it’s divided into four videos, and 1,2 and 4 are captioned… (don’t ask me why the third isn’t captioned, I don’t know)

Part 1

Part2

Part 3

Part 4

2010 in review

The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

The Blog-Health-o-Meter™ reads This blog is on fire!.

Crunchy numbers

The average container ship can carry about 4,500 containers. This blog was viewed about 24,000 times in 2010. If each view were a shipping container, your blog would have filled about 5 fully loaded ships.

In 2010, there were 18 new posts, growing the total archive of this blog to 191 posts. There were 59 pictures uploaded, taking up a total of 2mb. That’s about 1 pictures per week.

The busiest day of the year was January 27th with 140 views. The most popular post that day was Politics.

Where did they come from?

The top referring sites in 2010 were deafread.com, facebook.com, wellsphere.com, deafvillage.com, and stumbleupon.com.

Some visitors came searching, mostly for broken heart, heart broken, deaf, electric storm, and fatigue.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

1

Politics November 2007

2

Mending my broken heart September 2008
5 comments

3

From HardOfHearing to deaf – the symptoms May 2007
4 comments

4

Vestibular disorder symptoms I have experienced January 2008
5 comments

5

Explaining the analogy: “Recruitment” of hair cells in cochlea January 2008
18 comments

Tired of being tired

Hello world I know it has been a while since I posted, and it has been intentionally. I need to focus on other things than my problems, including my hearing difficulties. I need to just live my life I think that is the best medicine right now.

I have therefore decided to take a long break from writing here.

I will return in 2011 when I get my second CI.

Otherwise I’m still getting better, both health wise (in general) and hearing wise. But the recovery takes extremely long time, and I guess it’s because I went so far off the edge before getting my first CI. I believe a lot of my current challenges are due to the fact that it took 5 years from my decision to go for CI, before I was operated.

I believe it will be very interesting to see what happens with my speech perception with CI no 2. next year.

Hope you all are well.

Bless you!

Summa summarum

I will in near future speak to a group of people with special interest in CI. This group will consist of both professionals and other fellow cyborgs. In regards to this speech, I was approached by a fellow speaker at the same conference, and she asked about what I would talk about. As I wrote the response I thought this was good material for this blog as well.

Here’s what I wrote:

On the top of my head I think I was in an impossible and very difficult situation prior to the (CI) operation. I felt it was the last straw. It was unthinkable for me to become utterly deaf. There was only one option.

The process leading up to the operation was of course heavily influenced by the very long and exhausting waiting-time (more than 4 years). I spent my time as best I could; wrote on this blog, went to shrink, got rid of debts, had more time together with my son, found and lost one girlfriend, then found (and kept) another wonderful girlfriend , “worked on” my social network and family. Among many other things…

In the weeks before and after the surgery I wasn’t really worried, had great confidence it would work out. this confidence came from the vast knowledge I had acquired on the (CI) subject in the years prior to the surgery. I was aware there were pitfalls, but knew that if anything went wrong, they would quickly operate the other ear.

The surgery was relatively successful, apart from some problems with balance and sporadic tinnitus attacks. The problems with balance slowly dissipated, with a grand finale of a short hospitalization due to a complete failure to stand on my two feet one morning (3 days later I was good to go again).

Post-surgery the hardest part for me has been the tinnitus. In some periods my energy has reappeared in short glimpses, which delighted me greatly. But most of the time has been a struggle up-hill in regards tot he quality of the sounds which are still very much out of whack.

Tolerance for sound has been the greatest personal victory. The struggle isn’t completely over, but mostly I am able to keep the CI on all the time.

Tinnitus remains the big bad wolf. But with tinnitus-mastering course (type stress management course), a strong psyche and as a (very lucky in a global perspective) recipient of benefits from the Norwegian state I have reached all my goals. [more text after image!]

I have built a good relationship with my girlfriend, made a good relationship with a new extra son, moved in with girlfriend and totally renovated the new apartment. It has been exhausting, but with the right delegation of my resources and focus, and the newly learnt ability to say “no”, I managed to pull through.

It is with great expectation and with great belief in the future I now look forward to becoming a bilateral cyborg later this year.

These things just takes time…

Two announcements in Norwegian (to my Norwegian readers)

Til mine norske lesere:
Jeg skal på to konferanser i den nærmeste fremtid og håper å se dere der også! Vi må snakke sammen!

Konferanse 1:

“Å leve med Cochlea Implantat (CI)
- kurs for voksne pasienter og deres pårørende”

 

v. Lærings- og mestringssenteret Rikshospitalet

Tid: 1. og 2. september 2010
Sted: Nasjonalt senter for hørsel og psykisk helse, Sognsvannsveien 21, Bygning 3, Gaustad.

Temaer: CI-prosessoren og programmering ved audiofysiker, utprøving av utstyr, tekniske hjelpemidler, brukererfaringer, utfordringer, forventninger og mestring ved psykiater, Hva er viktig i det daglige/hvor kan man få hjelp/rettigheter og om nyttige nettsteder ved audiopedagog, info fra Hørselshemmedes landsforbund (HLF) og fra Briskeby.

Det vil bli foredrag, gruppesamtaler og plenum. Det vil bli rikelig anledning til spørsmål.

For påmelding ta kontakt med:

Ellen Glåmseter
leder
Lærings- og Mestringssenteret,
tlf.: 230 70820 / mob.: 995 55 339, e-post: Lms@rikshospitalet.no

Konferanse 2 (mer informasjon følger etter bildet):

Sted og tilrettelegging

· Erfaringskonferansen vil bli holdt i lokalene til Briskeby Skole og Kompetansesenter AS i Lier.
· Vi har bl.a. et auditorium med plass til 80 personer, utstyrt med hørselsteknisk utstyr og teleslynge.
· Skrivetolker vil oversette direkte fra engelsk til norsk.

Dagene vil inneholde forelesninger av:
· Education tutor Mrs. Diana F. Harbor, Ear Foundation, Nottingham, England
· Audiofysiker Ole Tvete Øre-nese-halsavdelingen på Rikshospitalet
· Prosjektleder Marion Eriksen fra prosjektet ”CI-det du hører”
· Psykomotorisk fysioterapeut og bruker Inger Anita Herheim
· Audiopedagog Wenche Helsingeng, Briskeby Skole og Kompetansesenter AS
· Spesialpedagog Anne Elisabeth Strøm, Briskeby Skole og Kompetansesenter AS
· Overlege dr.med. Marie Bunne Øre-nese-halsavdelingen på Rikshospitalet
· Audiograf Gøril Haukøy, Medisan AS
· Brukere
· Nærpersoner

Temaer:
· CI-brukere og deres erfaringer med rehabiliteringssituasjoner i Norge
· Nærpersoners kunnskap og opplevelser
· Medisinsk oppdatering – hva er nytt?
· Tekniske nyheter – hvordan kan vi ta i bruk tekniske hjelpemidler?
· Pedagogisk rehabilitering
· Høretrening

Konferansen starter med registrering og kaffe 21. oktober kl 09:00. Forelesningene starter kl 10:00. Konferansen avsluttes 22. oktober kl 16:00.

NB! Deltagerne på konferansen må selv bestille hotellrom

Briskeby har imidlertid reservert rom på følgende hoteller:

Best Western Globus Hotel  (tlf: 32 89 04 00)
- 750,- per enkeltrom  per natt.
- 950,- per dobbeltrom per natt.

Rica Park Hotel (tlf: 32 26 36 00)
- 795,- per enkeltrom per natt.
- 1045,- per dobbeltrom per natt.

For å få disse prisene må du oppgi at du skal delta på CI-konferanse på Briskeby.

Elektronisk påmelding | Hvor er Briskeby?

Kontaktperson:

Aud Eli Thjømøe
Telefon:              32 22 65 21
Mobil:                  91 78 73 70
E-post:                 aud-eli.thjomoe@statped.no

Clear Voice™ – and more thorough thoughts

Shortly after my last blog post I adjusted the Clear Voice™  from a medium setting, to low, following the first two weeks of trying it in the medium setting. I absolutely found the medium setting useful in noisy environments, but could not use it while in a non-polluted environment. It simply takes away too much information from the speech that I need. My speech-perception while using Clear Voice™ in normal home-environment is significantly reduced.

So was the low setting any improvement? Well, both yes and no. It didn’t take out as much in the speech in normal listening environment, but also didn’t take out as much noise in noisy environments.

I will take it back to medium setting, and use it manually when I have a direct and pressing need for it.

So, Clear Voice™ simultaneously with my ability to speech read absolutely works for me in noise. I will use it for that, but not all the time.

I got a question from a reader who has an infant, about whether children should be fitted with Clear Voice or not.

Please note: My opinions are never absolute truths, please do not let my opinions be the only source for any decisions made regarding this or any other issues I might comment on.

I think that the brain learns to deal with noise in it’s own way. So infants or individuals who has never used hearing aids, might be better off not using Clear Voice in the long run. It will, of course, also depend on the future development of Clear Voice, but as it is today, this is where I stand. If you, the reader of this, feel like it’s beneficial for you, then I’m very happy for you, use it all you like. But for me it has limited usefulness. It will help me in extreme sound-situations, and it will help me combat fatigue (saving me from the most exhausting environments). But I will only use it occasionally, because I want to allow the plasticity of my brain to deal with “useless” sounds. I believe it will do a better job in the long run, than the Clear Voice has potential to do…

There are other settings and parameters in the Harmony software that can deal with issues of noise and speech comprehension. I will deal with some of those parameters in a later post (work in progress).

This especially applies when I become a bilateral implantee sometime this year… I have a theory things will be a little different when it comes to dealing with the world of sounds and speech in noise when I become bilateral…

More thorough thoughts, an attempt to clear things up

I have a few challenges while writing these blog-posts that delves into the technical aspects of the Advanced Bionics cochlear implants. The biggest challenge is represented by my lack of both neurological and technical insight and understanding. I had  mathematics, chemistry, physics and biology in Upper/senior secondary school, and believe I understand the basic principles.
As someone wise & famous (Socrates/Platon?) once said: “The more you learn, the better you understand just how little you know…”

Then comes the fact that I’m a person who likes to think in the big picture perspective, but to do that well, one needs knowledge on many things specific, too. My ambition with this blog is to be useful to as many as possible, to provide useful information that I didn’t find myself when I started the process of researching and understanding the subject of cochlear implants.

Subsequently I find the subject I write about, becoming more and more complex as I learn more about it. As an online friend of mine said; “After reading the CI MAPing book and after working with a few folks on their MAPs, I realized that setting a MAP has an element of magic & luck to it.  It’s not black & white.”
This is also my own experience. The whole “learning to hear again” – process is exactly that; a personal process. It’s not an exact experience that can be “applied” to someone else. Because everybody has different kinds of hearing histories, everybody will also have their unique process of adjusting to the CI. Yes, we can learn from each others’ experiences, but when it comes to doing the actual adjustment, it basically comes down to this:

1. Your ability to understand your needs (sound wise), and then to express your experiences and needs,
2. Your audio physicist (person who makes adjustments to the CI parameters) ability to understand and translate your expressions and thoughts into suggestions and actual changes in the software parameters.

I do get feedback that people find my posts useful, so I will continue with what I do. I wish people had more critical questions, that is very much welcome in my blog! I often feel my thoughts on these subjects (CI) are “halfway”, unfinished, lacking etc. It is in contact with other peoples minds I find new and supplementing thoughts and I feel I move forward in this “Project: Knowledge and understanding about all things CI”

A critical review of Clear Voice™ – and other things

First of all, let me introduce Advanced Bionics Clear Voice™. Then I want you all to know that I have tried and used this software product less than a week. And I absolutely love it

But; it is not perfect. It is designed to do it’s job in noisy surroundings, to help bringing out human voices, and that is one complex mammoth task! In order to be perfect, it would need to have a conscious intelligence, and that is as far as I know, still science fiction. I know next to nothing about the workings of this piece of software, so I will end this paragraph with a question: Does anyone have information as to the programming language and the algorithms used? Is fuzzy logic part of this software development?

I notice its imperfection in the absence of heavy noise. It takes away some information in speech which actually makes it harder for me to comprehend and grasp sentences. It kind of lies in the nature of the program; it is designed to remove some sounds, in which most of it is useless to the implantee. It depends on the nature of the noise. But of course, some of the frequencies the noise consists of, also is in the speech frequency range. Thus the software has no “choice” but to reduce some of the speech sounds too.

Clear Voice will occupy one of the program slots (Harmony only has 3), but since I so far only had use for 2 programs, it’s more than welcome I often switch program, and then forget about it. That is also my problem with Clear Voice; in normal private surroundings, the voices become somewhat garbled and harder to understand. It takes me a little bit of time to remember to switch back to my primary program without Clear Voice to get back to “normal”. This is my own problem, in reagrds to switching the program and remembering to do so, but it’s still an inconvenience.

In real noisy environments, this application has already become essential to me, nothing less. I can listen better and speak more freely while driving the car, it’s easier to have a conversation on the phone while in the shop, out on the street or in other crowded public places. It takes away A LOT of the effort I previously needed to put into understanding speech in noisy surroundings!

It is my hope that this piece of software will save me from fatigue and help me heal more and better/faster in terms of prolonged exhaustion.

Clear Voice does not cure my tinnitus. It’s funny when I think about it, but some of the noise I hear, also in noisy surroundings, is actually my own tinnitus… Clear Voice will, I believe, in the time to come, help me understand better the effect my tinnitus has on me in various sound surroundings. I have a theory that the tinnitus worsens in noisy situations, because noisy situations induces stress (why wouldn’t it?) But since the CI is a powerful nerve stimulator, it “drowns” or masks the tinnitus to the extent that the brain doesn’t notice it. But that doesn’t necessarily mean it’s gone… That depends on the origin of the tinnitus; does it emerge from the brain, or from the other parts of the nervous system?

I will use Clear Voice every day, and I will probably become better at remembering to switch the program on and off, as I grow to get used to it. Definitely a recommended piece of software for anybodys Advanced Bionics CI.

End of review, and over to the other things:

I a currently in the process of establishing a new place of residence. It was a worn down flat, which my girlfriend and I bought relatively cheap, and are now well underway in renovating. We’ve ripped the place apart, short of the walls and ceiling. Everything else is new. New coat of paint in ceiling and on walls (on top of new glass fibred wall paper), new wooden floor, new doors, new kitchen, and to top it off, we hired a bathroom renovator specialist to take care of the bathroom and WC.

In the midst of this, we have been moving all of my girlfriends stuff, and are still working on my stuff. So now you know why it has been silent on this blog for some time

Stress, stress management, tinnitus and the road ahead

 

Dedicated to funnyoldlife, who is having her first CI on february 25th! Good luck to you!

 

In the last few months I have been increasingly aware of the impact stress has and HAS HAD on me. In this post I will get into the subject of stress related to my hearing history and to sound-triggered stress reactions. It will be my subjective observations and thoughts, and by no means a scientific paper of any sort. If you would like to read up on various forms of stress, stressors and the short and long term impacts, this article from The Franklin Institute is a good place to start. Also keep in mind, that this is a complex issue, there is a lot more to this subject than I write or think about…