Starting a new blog–in Norwegian

I will not kill this blog, there is too much good stuff and loads of information on it. I might even write more if anything significant crosses my path. But as I have arrived at a new chapter in my life, it was time to move over to a new blog. That blog will be dedicated to my new life as a deaf who uses sign-language. I assume those of you who wants to follow me on the new blog, know how to google translate etc. If you have any questions, feel free to comment (on my new Norwegian blog) in English, no problem.

The new blog http://tegnspraak.wordpress.com

Another chapter…

Right now I’m writing from my temporary new home: Ål Folkehøyskole. I’m in the process of learning Norwegian sign language. This stage of rehabilitation will take me through the winter up until May 2014.

Why sign-language now, after two CI’s?

girls_signWell, several reasons. Prime reason is that my wife and I found out we had to take some serious action if anything is going to change or improve with me (and along with me, the whole family). The biggest concern now is still severe fatigue (resulting in loss of cognitive skills, lack of concentration and sleep disturbances et al.) caused using the CI’s mixed with tinnitus and other immune system related issues.

The price to pay

missuMy wife pays the biggest price this year, being alone with two children with a fulltime job. I can’t begin to tell you how much indebted I feel. She is just awesome!
Then it’s the being apart from each others that all of us has to endure. Luckily I have my CI’s, and can Skype-chat with my children and wife.

My health, post-CI

Since my last CI-activation, I have focused on resting and getting rid of stress in order to get my energy back. Finding a balance has been my main goal. It has been a struggle (still is), for many reasons. Having a toddler who has trouble sleeping well at night due to medical reasons is one of them.

rehabilitationHealthvise, the situation has improved. My physiscian and the health-system has been able to help me with several smaller health issues that in combination also took a lot of my energy before.

Overall, things has improved to the extent I can tell the difference. But unfortunately, that is still not enough for me to be able to just live my life without concerns about my ability to function the next day. It takes a lot of time after so many years being chronically ill. Years actually.

Rebound

reboundWhat was hard to get into the latter year was the physical exercise that I have known for a long time was overdue. Being chronically fatigued means you just can’t exercise like any other person. In fact it can make your health worse. It’l like when an athlete is overtrained, he has to stop training.

Now I finally have a set of parameters in my life that allows me to focus on that. I am, 10 days into my school-year, well underway with great results and feeling well about it too. Mostly swimming, but also focus on diet and weight. When I get results from that regime, other things will follow, among them; more energy and less impact of winter depression (hopefully). This will be an interesting process.

CI and sign-language?

Yes, they combine well! CI is not only about hearing again, period. It is about hearing as well as you can. It is NOT ALWAYS the total solution. For a whole human being to maximize the profits of such technology, we have to consider the whole picture.

For me the CI presented the ability to hear quite well again after going (being?) deaf for nearly a decade (of which the last 5 years were totally unnecessary, but that is another issue). However, the CI cannot give everyone super-hearing again. For that the technology is still too crude, and the interface between man and machine is too poorly designed and developed. And let’s not forget that the brain is still the boss, no matter how good the technology is or how motivated an individual can be. If the brain has been left without sound-stimulations for too long, the brain develops in other directions, improving other areas in order to compensate. Inserting CI in a lifelong deaf person doesn’t make much sense in that aspect.

social skillsThe key here is SOCIAL HEARING. The ability to apprehend speech. I have trouble maintaining a meaningful conversation if there is other people speaking nearby, or if there is ambient noise around me. I can push and strain myself and achieve a fairly good result. But it has a very steep price; fatigue.

Ambient noise wears me out

Ambient Noise, With Sprinkles_sWith CI, I perceive all sounds around me, like I have never done before in my life. The sounds of an airconditioner, wind woshing in the trees, various creatures moving around, kitchen utilities running, children playing/singing/etc are all sounds that mixes with what I need; speech from someone communicating with me. That mixing of sounds gives the brain a lot of work, which in turn makes me quickly tired. Then add the tinnitus (which "fogs" incoming sounds too), the brain’s previously adapted compensating techniques of lip-reading, putting togheter pieces of comprehended words, guessing the missing parts etc etc. This all adds up to a bill that is simply too big for me (and my brain). It’s just not sustainable.

I can’t function solely on CI for a whole day, let alone the rest of my life. hat’s why I’m learning sign language now; I need yet another compansation technique! One that supports all my other communications skills.

The biggest part of sign-language

The biggest "challenge" of sign-language for my family isn’t me learning sign-language. It is providing my family and people around me with the opportunity to learn it too! I’m fortunate to have a wife who understood this before I did (at least she was the one who saw the necessity for taking the big leap). Without her understanding, support and initiative, I would still be sitting home being tired all the time. But the support-system in this regard is just too weak and unsupportive here in Norway. We can do so much better.

aslsignfamilyCommunication is all about social interaction. We as humans are social beings. Without social interaction we are unlikely to be happy and contributing. The meaning of life is to live the life among other human beings, experience emotions and so on and so on. One person getting socially isolated is a burden for us all, not just the one.

One deaf individual in a hearing community, can be a loss for the whole community. One deaf family member can be a loss for the whole family. Thats why rehabilitation of deafness also includes those around that individual.

 

to be continued….

Hørselstap – sorg og aksept, stress og mestring

Hvorfor jeg ikke fant denne artikkelen før nå er merkelig, men til tross for datoen er den fortsatt meget aktuell.

http://www.psykologtidsskriftet.no/index.php?seks_id=79645&a=2

For my English readers a Google translate (quality of translation is a bit whacky, but read between the lines and you will get the essence of the article) version:

http://translate.googleusercontent.com/translate_c?depth=1&nv=1&rurl=translate.google.no&sl=auto&tl=en&u=http://www.psykologtidsskriftet.no/index.php%3Fseks_id%3D79645%26a%3D2&usg=ALkJrhjEAgToxXkyiy1K8PLaRvt_a4hsxw

Convention on the Rights of Persons with Disabilities

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…

tinnitus

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 bad comes goodFrom 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

beethoven-777x934In 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

pMy 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

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  :-P

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…

Posted in deaf. 1 Comment »

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!
Posted in deaf. 4 Comments »

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)

 

Walking_On_Clouds

 

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.

nero-runninMusic 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! Smilefjes

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

Challenge 1:  Overwhelmed and family life

overwhelmed3My 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™.

basementBut 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.

baby-cryingI 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

balanceLight 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

Utbrent_slitenAll 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?

augmented-xylophoneVery 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 Smilefjes I know that given time, it will improve, and I’m not at all stressed about that Smilefjes

How do I train this new ear?

interval-training1Not 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 Smilefjes ), and have the feeling of having to pay for it today Trist fjes But that is a good notion, thinking of it, I had my first OK day yesterday (being bilateral, that is) Smilefjes

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.

pain-ear-1Some 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?

long_stone_bridge_over_water-wideThe bridge? She is my wife Smilefjes  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!

poweroflove

Posted in deaf. 4 Comments »

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.

Migraine-Aura

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 sensationsA_Little_Unsteady_-_Rebecca_Latham

  • 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]

This is quite accurate image of my aura-phenomenon at nightVisual 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 Smile

 

Becoming bilateral!

transorbital_bilateralCIOn 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 Smile 
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 Winking smile) 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.

cocktail-partyI 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 Smile

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 Smile) 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.1280px-Migraine_aura
  • 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 :)

joanna

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:

Healthy blog!

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

Crunchy numbers

Featured image

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 Smilefjes 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 Smilefjes 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!

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Summa summarum

public-speaking-pic 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.

Waiting4Raise 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!]

house 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

RH logo

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):

CIdetsomdeter

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

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