CI-activation log no. 2 – day 1 and 2 – 1st auditory self assessment

These values that I test on myself are values based on this resource:
The scores are from the chart on that page.

The sound-level on my laptop HP HDX18 will be set to the value of 74 every time I do this test. My CI’s volume wheel is set to exact the middle position (turning all the way down reduces sound volume by 20% and turning up increases 50%!). Then I have the same test-settings every time. “Wire” means that I use a direct connection between the computers jack-plug-outlet and my Advanced Bionics processor. No sound pollution possible.

Every level of registration is a notion of sound. That means that I do not necessarily detect the difference in tone/frequency. Green is where I hear the sound (yet so far all the sounds sound mostly the same, i.e.. a very thin squeaking tone or beeep), red is only a short beep, blip, bip or ding.

( I can hear  violin of my own breath, broken glass of paper being crumbled and a ding every time one of my fingers hit a key on the keyboard!)

If anyone know of more sound-test or sound-generating resources on the internet, I’d be grateful for any tips!

Date of test: 07.09.2009 (1,5 and 6 kHz is the frequencies of my tinnitus, hard to hear the test-tone)

Program 1. (stronger low pitch, weaker high pitch, 120)

Freq. 30 Hz 45 Hz 60 Hz 90Hz 125 Hz 187 Hz 250 Hz 375 Hz 500 Hz 750 Hz 1 kHz 1,5kHz 2 kHz 3 kHz 4 kHz 6 kHz 8 kHz 12kHz 16kHz
No wire -9 -6 -9 -9 -18 30 -27 -42 -45 -51 -48 -27 -48 -48 -45 -27 -42 -6 -3
Wire -27 -24 -30 -21 -15 -57 -66 -75 -84 -75 -78 -63 -54 -78 -72 -72 -69 -27 -27
08.09.09 -21 -30 -27 -24 -18 -60 -69 -75 -81 -75 -72 -60 -57 -78 -75 -63 -63 -27 -27

Program 2. (Flat profile, 16 electrodes)

Freq. 30 Hz 45 Hz 60 Hz 90Hz 125 Hz 187 Hz 250 Hz 375 Hz 500 Hz 750 Hz 1 kHz 1,5kHz 2 kHz 3 kHz 4 kHz 6 kHz 8 kHz 12kHz 16kHz
No wire -6 -3 -6 -6 -18 -27 -21 -33 -42 -42 -42 -30 -36 -36 -39 -36 -42 -6 -6
Wire 0 0 0 -6 -6 -51 -69 -75 -75 -75 -72 -60 -60 -60 -63 -51 -54 -27 -27

Program 3. (Flat profile, 120)

Freq. 30 Hz 45 Hz 60 Hz 90Hz 125 Hz 187 Hz 250 Hz 375 Hz 500 Hz 750 Hz 1 kHz 1,5kHz 2 kHz 3 kHz 4 kHz 6 kHz 8 kHz 12kHz 16kHz
No wire -6 -6 -6 -6 -12 -27 -21 -36 -39 -42 -45 -30 -27 -39 -54 -36 -42 -9 -9

Status update IV – early autumn 2008 – part 2 of 5

Adjustment of my HA

Dear Abbie, this paragraph is dedicated to you:

Earlier this year I complained about hypersensitivity to sounds, recruitment and other issues that made my days difficult. Then a fellow CI-blogger; Abbie simply suggested that I should get my hearing aids adjusted. Of course! Why didn’t I think about that?
(I think the answer to this is that I still define myself as a hearing person, so reducing my hearing would make me become more deaf, which I am not in my own definition of my self…. I know it’s contradictory… complicated stuff this self image thing.)

Anyway, I carried the thought for some time, and finally got myself around to ask for an adjustment-session at Rikshospitalet, which I got with a few weeks notice. I got it done this august after coming home from vacation.

So I reduced the levels of amplification in my hearing aids, and this time I was relentless about protecting myself from unnecessary strain. I adjusted the overall volume down two notches, and reduced the amplification of faint sounds significantly, these are sounds I won’t need, I can’t use them to anything useful anyway. And I reduced the sounds in the higher end of the frequency-scale a little bit. All in all it has reduced the strain of me using my HA, but at the same time I’m certainly more deaf. But the thing is, I now use more of my energy to lip read and guess the context of the conversation, rather than use my energy in deflecting the too sharp and too strong sounds coming from my hearing aids…
I don’t have to hush on my mother or son as much anymore, which is a relief, actually.

At this hearing aid adjustment I did a new hearing test. I was just as honest with myself this time as I was last time. I did not cheat on the test like I have done in all the years before. The result was the same as the previous one, 2 years ago. Still just as deaf as when I started the process of getting my CI and writing this blog.
The upside is I can keep the hearing aids on for longer periods now, and I tolerate sound and noise better. But it’s worse in social aspects with many people around, and one on one conversations in quiet surroundings are also a bit more difficult, due to the lower volume. But overall the adjustment was the right thing to do in order to avoid going crazy and overburdened in the audio sensory aspect.

I’m still just as tired and prone to general fatigue, but the pain from loud sounds are gone, and the level of tolerance is way up. Maybe given a few months I will notice effects from this preventative measure too? Too early to tell anyway, but will report here if that turns out to be the fact.

Thanks for the suggestion Abbie! Sometimes one need to hear the obvious from others…

Posted in hearing. 1 Comment »

The relief of a summer

This summer I felt better than I have in many years. Somehow I think getting away also meant that my mental self got away for a while. I did what I said before in this blog: I left it all (about my hearing and thinking about it and being tired from it) behind and “forgot” it. It was a really good summer for me with one exception: my girlfriend had to work and couldn’t join me… But with a little help from my friends….

I was really busy: Viking-festival, a little party almost every night with my friends from Poland, a bicycle-trip almost every day while in Poland, spending time with my son, and spending time with my family at our place in Sweden and fixing it up even more. I got a energy boost from getting away and doing physical work and exercise outdoor with fresh air and the beauty of nature around me.

Coming home was hard, I could feel the weight of my life right now coming down on my shoulders… I’m not complaining, but explaining the fact that psychology has a huge factor in my situation. Coming home reminded me of everything: not being able to work, waiting for the CI, missing my girlfriend badly, getting tired from spending time with friends and family in a social situation (I was really exhausted after the vacation, in a good way, and I still haven’t rested up again, it feels like.)

So now I’m almost back into the everyday routine that I have had the last two years; and it is hard. It isn’t really bad, but it is certainly a burden that requires that I keep thinking about the positive and do all I can to keep bad thoughts at bay.

I was interviewed by the Norwegian Hard Of Hearing association membership-magazine today (it is called “Din Hørsel” (Your Hearing), will get back to that when it’s published sometime in late September or early October.

It was an interview about me waiting for so long for the CI…

Also the the struggle for getting bilateral rather than unilateral CI has begun for me. I finally got into contact with Sheri Byrne from the Let them hear foundation, the US lawyer who won 325 or-so lawsuits against the insurance-companies who in the beginning declined bilateral CI stating that one was sufficient for everyone… (would you accept good sight on one eye rather than on both?)

Anyway, I’m back after a long nice summer, and will continue to write more in this blog. Keep reading, and I really appreciate all comments given, even negative ones… I’m all for freedom of speech.

Posted in hearing. 1 Comment »

Scientific proof in favor of bilateral CI

Hello, world! I’m back after long and nice vacation. Had a great time. Now I’m ready for another year of blogging about waiting for my CI. Will initially start up with a plea for help about information.

I need arguments in favor of bilateral Cochlea Implants. I wish to operate on both ears simultaneously for several reasons: one surgery and be done with it. One time recovery instead of two. I will benefit from doing the same drastic change to both ears at the same time as opposed to operating both with years between. I risk getting an imbalance between my two ears that will take long time to adjust if it will be several years between both surgeries (if I’m ever allowed a second surgery that is…)

Could my readers help me with finding research material concerning this topic?

I found this piece of information on the net:

Benefits of bilateral are much more than just the obvious cost benefit, or the sound-booth measurable difference. As I’ve investigated whether to get a bilateral for my 6-year-old son, I’ve spoken to many, many adults and parents of children with bilaterals.

Here’s what I’m being told, over and over: Science (sound-booth tests) says it’s a 10-20% benefit. However, science can’t measure how much less exhausted I (or the child) am at the end of the day – how much more I (or the child) feel willing to participate in groups, how much more conversation I’m getting. All of this eventually translates into costs, later in life.

If I ask the scientists, they say the benefits (measurable) are
* Improved distance hearing
* Improved incidental hearing
* Improved localization of sound
* Improved performance in sound-to-noise settings

Ask the recipients themselves, or their parents, they add:
* Improved enjoyment of music
* Improved hearing in group settings (isn’t life one big group setting – especially childhood?)
* Exhaustion factor, read above

Some studies show that unilaterally deaf children are ____ 10 times _____ more likely to fail a grade in school. Unilateral implant recipients seem to me to fit into this category.


Would it be possible to find papers and studies about these things that can count as proof in the legal or bureaucratic system?

Also I found this this name: Sheri Byrne-Haber (link to article about her work in the US). Does anybody have her email-address? I’d like to get in touch with her to see if she can share some of her arguments…

“Claire renaissance” in the drizzle rain

Visual beauty will suffice in the absence of my dear ones and in absence of auditory art/beauty…

Posted by ShoZu

What is the CI-situation elsewhere in Europe?

If anyone has information regarding CI-operations and CI-related health benefits in Europe, I would be extremely grateful for any input.

Do people have to wait for surgery?
How is it financed?
How about the follow up, and re-mapping after the surgery?
What country has the best reputation?
Is Advanced Bionics represented in all European countries? (I might have found out for myself, but I’m on my way to the great Norwegian mountains and fiords, so this is also a memory-note to myself…

Particularly I’m interested in Sweden, Denmark, Germany, Switzerland, Austria and UK. Maybe even the old east-bloc countries are better than Norway in this area? I’d love to hear!

My mother asked me if things would be different if I was a EU-citizen, as apposed to an European Economic Area (EEA) – citizen, which I am, being a Norwegian…

I could move to Sweden if that would speed things up a little bit. That’s the idea, anyway…


the weather is great and I’m outta here for the weekend! Have a nice weekend everyone!

17052008 – the last b’day before CI?

My son grabbed my mobile and took my picture. I had forgot that Shozu sends them directly to my blog unless I abort, and alas; my sons “journalistic scoop” ended up on my blog 🙂

He did a nice job, so I’ll just leave it as it is with my text here…

Thanks son! I had a nice b’day! Love you!

Posted by ShoZu

As life goes on… A post-mortem salute.

A person I liked extremely well for her incredible kindness and self-sacrificial nature has moved on to the next world…

Ingrid-Line Hernholm, mother of 5, passed away peacefully on April 14th after she had been in coma since suffering a brain hemorrhage on April 1st. She suffered the brain stroke while working for Norwegian Association for Hard of Hearing.


Ingrid-Line, all of us who had the joy of knowing you and your soft gentle voice, mourn your passing. May you rest in peace!

Hvis jeg kunne leve mitt liv om igjen

Jeg ville våge å ta mer feil. 
Jeg ville slappe mer av. Være mer smidig 
Jeg ville være mer enfoldig 
Jeg ville ta færre ting alvorlig 
Jeg ville ta flere sjanser, jeg ville ha flere opplevelser 
Jeg ville  bestige flere tinder og svømme over flere floder 
Jeg ville spise mere is og færre bønner 
Jeg ville kanskje få flere vanskeligheter, men færre innbilte.

Ser du, jeg er en av dem som lever følsomt og sunt. 
Time etter time, dag etter dag 
Å, jeg har hatt mine øyeblikk, og hvis jeg skulle leve om igjen, ville jeg ha flere av  dem.
  Faktisk ville jeg prøve å ikke ha noe annet.  Bare øyeblikk. 
Det ene etter det andre, i stedet for å leve så mange år med tanke på morgendagen. 

Jeg har vært av dem som aldri reiser noe sted uten et termometer, en varmeflaske, 
en regnfrakk og en fallskjerm. 
Hvis jeg skulle leve om igjen så ville jeg reise med mindre bagasje. 

Hvis jeg skulle leve mitt liv om igjen, ville jeg begynne å gå barføtt tidligere om våren,
og fortsette lengre utover høsten. 
Jeg ville danse mer 
Jeg ville unne meg selv flere karusellturer 
Jeg ville plukke flere tusenfryd 

Nadine Starr, 85 år

If I could live my life again

In the next one I would dare to make more mistakes.
I would not try to be so perfect, I would relax more.
I would be sillier than I have been, in fact, I would take very few things seriously.
I would be less hygienic.
I would take more risks, make more trips, contemplate more sunsets, climb more mountains, swim more rivers.
I would go to more places I have never been to,
I would eat more ice creams and less cereals.
I would have more real problems and less imaginary ones.

I have been one of those persons who lived each minute of his life with judgement and in a prolific way; of course I had happy moments.
But if I could go back, I would try to only have good moments.
For if you don’t know, that is what life is made of, only of moments; do not miss the now.

I was one of those who never went anywhere without a thermometer, a bag of hot water, an umbrella and a parachute;
if I could live again, I would travel lighter.

If I would live my life again, I would begin by walking barefoot earlier in spring,
and continue longer into the fall.
I would dance more
I would give myself more joyrides on a carousel
I would pick many more daisies…



Letter from her colleagues

Kjære sentralstyremedlem, fylkesleder og utvalgsleder i HLF.

Det er med stor sorg at vi må meddele at vår avholdte kollega Ingrid-Line Bruland Hernholm er gått bort. Ingrid-Line ble rammet av et hjerneslag mens hun var på jobb tirsdag 1. april. Ambulanse var raskt på plass, og Ingrid-Line ble brakt til sykehus. Vi hadde et sterkt håp om at hun skulle stå det igjennom. Men mandag 14. april var dessverre håpet ute, og hun sovnet stille inn.

Vi vet at mange satte stor pris på Ingrid-Line. Hun gjorde i mange år en stor innsats som tillitsvalgt i HLF. I fjor begynte hun i HLFs administrasjon og har gjort en strålende jobb i arbeidet overfor våre likemenn. Ingrid-Line var en kollega vi raskt ble glade i. Hun hadde mange venner i alle lag av HLF, og hun vil bli sterkt savnet av oss alle.

Våre tanker går til Ingrid-Lines familie. Vi tenker også på dere som hadde lært Ingrid-Line å kjenne. Mange har mistet en god venn og en avholdt kollega. Vi står sammen i sorgen over tapet av Ingrid-Line.

Dersom du føler du trenger å snakke med oss i forbindelse med Ingrid-Lines bortgang, er du selvsagt velkommen til å ringe.

En god hilsen fra
Geir Lippestad (generalsekretær HLF) ,
og Steinar Antonsen (organisasjonssjef),

Norwegian translation "Recruitment": Om fenomenet rekruttering

Here’s my original posting on this subject.

Artikkel av Dr. Neil:
Forklaring av “recruitment” ifbm hørselsnedsettelse

© Juni 2001 by Neil Bauman, Ph.D.
Norsk oversettelse: Stein Thomassen,
Link til originalen:
Du kan kontakte Dr. Neil på

Spørsmål: Enkelte mennesker kan ikke bruke høreapparater fordi de har alvorlig “recruitment”. Recruitment er et veldig merkelig navn på dette problemet. Ordet betyr å “verve” eller “rekruttere” Ordboken sier ingenting om hørselsproblemer og høreapparater. Hva er egentlig recruitment og hvor kommer det merkelige navnet fra? – C. H.

Svar: Godt spørsmål. Ikke rart du er forvirret! Selv mange helsearbeidere innen hørsel forstår ikke denne tilstanden som har dette merkelige navnet recruitment. Det er mange misforståelser rundt recruitment. Men faktisk er recruitment et godt ord for å beskrive dette fenomenet – så snart vi forstår hva som skjer i vårt indre øre.

Hva er recruitment?

Veldig forenklet kan man si at recruitment er når lyder oppleves å bli for sterke for fort.
Før vi ser på hvordan recruitment fikk navnet sitt, er det to ting vi må vite om recruitment.
For de første: Recruitment er alltid en bivirkning av et sensorinevralt hørselstap (tap pga ødelagte hårceller i det indre øret). Hvis du ikke har et sensorinevralt hørselstap, kan du ikke ha recruitment.

For de andre: Det finnes to andre fenomener som ofte sammenblandes med recruitment. Det er hyperakusis (overfølsomhet for normale lyder) og fonofobi (frykt for normale lyder, og etter hvert overfølsomhet for dem). Både hyperacksis and fonofobi kan opptre enten du har normal hørsel eller er hørselshemmet. Dersom du har sensorinevralt hørselstap, kan du faktisk lide av alle tre tilstandene på samme tid!

Hvordan recruitment fikk sitt navn
La oss nå ta en titt hvordan recruitment “fungerer” og hvordan det fikk sitt navn. Den kanskje letteste måten å forstå recruitment er å sammenligne tangentene på et piano med hårcellene som sitter i sneglehuset i det indre øret.

Pianoet har en rekke hvite tangenter, mens det indre øret vårt inneholder tusenvis av “hårceller.” Tenk på hver hårcelle som om den var en hvit tangent på et piano.
Piano-tangentene er inndelt i mange oktaver. Hver oktav bestå

r av 7 hvite tangenter. På samme måte kan du forestille deg hårcellene i vårt indre øre gruppert som mange “kritiske grupper” hvor hver kritisk gruppe består av et bestemt antall hårceller. Hver kritiske gruppe tilsvarer på denne måten en oktav på pianoet.
Akkurat slik som hver piano-tangent tilhører en eller annen oktav, tilhører hver hårcelle en eller annen kritisk gruppe.

Når du spiller en akkord på pianoet, trykker du ned to eller flere tangenter samtidig, men de sender bare ett lydsignal til hjernen din. På samme måte (men likevel annerledes) er det når en hårcelle som tilhører en bestemt kritisk gruppe, blir stimulert av en lyd. Hele den kritiske gruppen sender et lydsignal til hjernen vår, som vi “hører” som én lyd med den tonehøyden som den kritiske gruppen er følsom for. Slik fungere det når man hører normalt.

Når man har et sensorinevralt hørselstap, er det imidlertid slik at noen av hårcellene har dødd eller sluttet å fungere. Når dette skjer, vil hver “kritisk gruppe” ikke lenger være fullt “bemannet” med hårceller. Dette tilsvarer et piano hvor noen av de hvite tangentene er fjernet. Resultatet blir at noen oktaver ikke har 7 tangenter lenger.
Hjernen vår er slett ikke glad for en slik situasjon. Den forutsetter at hver kritiske gruppe har en full rekke av hårceller. På samme måte som en forening som mangler medlemmer, må verve eller rekruttere nye medlemmer, må hjernen vår også starte er rekrutterings-kampanje. Men siden alle hårcellene allerede er opptatt, finnes det ingen ledige å rekruttere.

Det hjernen da gjør, er ganske smart. Den rekrutterer helt enkelt noen hårceller fra de kritiske gruppene som ligger ved siden av. (Nå forstår vi det merkelige navnet.) Disse hårcellene må nå utføre dobbelt arbeid eller verre. De tilhører fremdeles sin opprinnelige kritiske gruppe, men er i tillegg også blitt medlem av en eller flere andre kritiske grupper.

Hvis bare noen få hårceller dør, så vil nabo-hårcellene lett takle dobbelt-jobbingen. Hvis mange eller de fleste hårcellene har dødd, vil hjernen likevel forsøke å rekruttere nok til at hver kritiske gruppe får en full rekke av hårceller. Dermed kan gjenlevende hårceller bli rekrutteret til å jobbe for mange kritiske grupper.

Virkningen av recruitment
Denne rekrutteringen forårsaker to grunnleggende problemer.
Det ene er at lyder som når fram til hjernen, later til å være mye kraftigere enn normalt. Årsaken er at de rekrutterte hårcellene fremdeles jobber i sin opprinnelige kritiske gruppe i tillegg til at de gjør tjeneste for andre nærliggende kritiske grupper.

Husk at når en hårcelle i et kritisk gruppe blir stimulert, sender hele den kritiske gruppen et signal til hjernen vår. Så den opprinnelige kritiske gruppen sender en ladning lyd til hjernen vår, og samtidig (siden de samme hårcellene nå er rekruttert til og jobbe for en nærliggende kritisk gruppe) stimuleres den nærliggende kritiske gruppen også. Derfor blir enda en ladning lyd sendt til hjernen vår. Dette fører til at vi opplever lyden som dobbelt så kraftig som normalt.
Hvis hørselstapet vårt er betydelig, kan en gitt hårcelle bli rekruttert til å jobbe for flere kritiske grupper samtidig. Følgelig kunne ørene våre sende f.eks. 8 ladninger lyd til hjernen vår, og vi ville da oppleve den resulterende lyden som 8 ganger kraftigere enn normalt. Du kan lett forstå hvordan lyder kan bli smertelig høye veldig raskt! Nå er det vi klager over vår “recruitment”.

Hvis du har alvorlig recruitment, er det faktisk slik at når en lyd blir høy nok til at du kan høre den, er den allerede så høy at du knapt kan utstå den.

Det andre problemet forbundet med recruitment er “uklar” hørsel. Siden hver kritiske gruppe sender et signal med den tonehøyden denne kritiske gruppen er spesialist på, er det slik at når hårcellene blir rekruttert til å jobbe for nærliggende grupper, stimuleres hver kritisk gruppe de er medlem av til å sende sine signaler også. Dette medfører at i stedet for å høre kun én tonehøyde på en gitt lyd, vil hjernen nå motta f.eks. 8 signaler samtidig – med 8 forskjellige tonehøyder.
Virkningen er at vi nå ofte ikke kan skille mellom ord som ligner på hverandre. Alle høres svært like ut for oss. Vi er ikke sikre på om det ble sagt “løpe” eller “kjøpe”. Eller var det “søte,” eller “bløte”, eller “øke”, eller noe lignende? Med andre ord har vi problemer med “tale-diskriminering” (skille lignende ord fra hverandre) i tillegg til problemer med lydstyrken. Dersom vår recruitment er betydelig, vil vår evne til tale-diskriminering sannsynligvis være sterkt redusert.
Litt forenklet kan man si at alt vi kan høre er enten stillhet eller kraftig støy med lite informasjon (lite forståelige ord). Tale som er kraftig nok til at vi kan høre den, blir bare en meningsløs grøt.

Dette er grunnen til at mange med kraftig recruitment ikke kan dra nytte av høreapparater. Høreapparatene forsterker alle lydene – så de gjør vondt. I tillegg kan ikke høreapparater korrigere for den dårlige tale-diskrimineringen. Vi “hører” fremdeles meningsløst babbel.
Imidlertid vil folk med lettere recruitment få mye hjelp av riktig innstilte høreapparater. De fleste moderne høreapparater har en eller annen for for komprimerings-teknikk innebygget. Når komprimeringen er korrekt innstilt i forhold til din hørsel, kan disse apparatene gjøre en forbløffende god jobb med å kompensere for dine recruitment-problemer.

© Juni 2001 by Neil Bauman, Ph.D.
Norsk oversettelse: Stein Thomassen,
Link til originalen:
Du kan kontakte Dr. Neil på

The end of CI-operations in Oslo, Norway? Video

Vodpod videos no longer available. from posted with vodpod

An update about the CI-situation in Norway feb 29th 2008 (in Norwegian)

This article is from

Garanterte CI-operasjoner – og måtte gå

Styremøtet på Rikshospitalet torsdag ble meget dramatisk. Først garanterte direktør Åge Danielsen at Rikshospitalet vil levere CI-operasjoner til voksne og barn som bestilt i oppdragsdokumentet fra helseministeren. Så fikk han sparken.

Klokken 00.20 natt til fredag fikk administrerende direktør Åge Danielsen ved Rikshospitalet sparken av styret. Han røk for å ha holdt tilbake informasjon om byggingen av det omstridte sykehotellet på Radiumhospitalet.

For hørselshemmede var det også knyttet stor spenning til de foreslåtte kuttene ved ØNH-avdelingens CI-team. Fem stillinger var foreslått kuttet i CI-teamet i tillegg til de fem som ble vedtatt kuttet under forrige innsparingsrunde 15. januar. CI-teamet består av åtte personer. Både HLF og fagfolkene ved ØNH-avdelingen har derfor fryktet at hele CI-tilbudet ved Rikshospitalet ville bli utradert.

– En seier for døve barn og voksne

På direkte spørsmål fra styret under budsjettbehandlingen bekreftet imidlertid Danielsen at CI-operasjonene vil bli levert i henhold til oppdragsdokumentet fra helseministeren. Dette innebærer 100 voksenoperasjoner i 2008 og at landsfunksjonen for barn opprettholdes. Det reduserte måltallet fra 227 til 200 implantater vil ramme dem som trenger revisjon av implantatene.

– Denne garantien fra sykehusadminstrasjonen til styret er en seier for døve barn og voksne som trenger hørselsoperasjon, sier HLFs generalsekretær Geir Lippestad, som har engasjert seg sterkt i saken etter at de dramatiske kuttforslagene ble kjent.

– Uforsvarlig situasjon
Fortsatt er det imidlertid en meget krevende situasjon ved ØNH-avdelingen på Rikshospitalet. For to uker siden trakk avdelingens leder Bente Mortensen og nestleder Kjell Brøndbo seg fra sine stillinger i protest mot de varslede kuttene.

– Det har oppstått uforsvarlig situasjon ut fra de oppgavene vi har. Blant annet er det kritisk at antall sengeplasser er redusert fra 27 til 20 ved avdelingen, sier tidligere avdelingsleder Bente Mortensen. Hun har trukket seg som leder ved ØNH-avdelingen, som blant annet har eneansvar for pasienter med hode-/halskreft i helseregionen.

Til tross for den nå avgåtte sykehusdirektørens CI-garanti, vil det bli kraftige nedskjæringer i den såkalte ØPO-klinikken, som i tillegg til øre-nese-hals inneholder plastikk- og ortopedisk kirurgi.

Overlege Marie Bunne forteller at ØNH-avdelingen har over 900 pasienter som venter på å komme inn til utredning for kompliserte hørselsproblemer, hull på trommehinnen, kronisk betennelse på hørebenet og andre tilstander knyttet til øre og hørsel. I tillegg har avdelingen mellom 700 og 800 pasienter som enten er i systemet eller er funnet kvalifisert for operasjon. Avdelingen skal også følge opp nyfødte som blir oppdaget under hørselscreeningen på Ullevål og Asker og Bærum sykehus.

– Til tross for at sykehuset nå garanterer CI-operasjonene, står ØNH-avdelingen på Rikshospitalet overfor store utfordringer, sier Lippestad. Han lover at HLF vil følge situasjonen ved sykehuset tett i tiden fremover.

The health debate in Norway (it’s all about personal prestige and money, not the patients…)

Just wrote a short piece in a comment-field about the political game that is ongoing in health-Norway right now: (sorry for not translating to english right now)

This is in response to the main article in Dagbladets online news this morning.

Alle debattinnleggene her har litt rett. Det er blitt en catch22-situasjon og nå er det et svarte-per spill som bare går ut over pasientene. Det er som Brustad sa: “dette er kompliserte saker, og det blir mer bråk.”
Tror generelt på det gode i mennesker, men at aktørene er fanget i et system som er basert på noen gamle dogmer og styringsmekanismer som ikke fungerer i møtet med den tøffe nykapitalismen!
Det må gjøres flere ting:

1. spesialisering MÅ SENTRALISERES og SATSES på! Bygg opp fagmiljøene og BESKYTT disse miljøene! (ikke kutt som de gjør med CI-teamet på RH!!!)
2. generell helse ute i distriktene må opprettholdes (bl.a. mottak og fødestuer)
3. byråkratiseringen av helse-Norge må reverseres, alt for mye henvisninger, papir-skyfling og for lite behandling…
4. Sett ned en kommisjon for å vurdere om det kan spares i administrative stillinger…
5. få legene til å gjøre legearbeid, overlat administrasjon til spesialutdannede (innen helseadministrasjon) sykepleiere med f.eks 10 års ansiennitet (en overlege kan være rådgiver til denne administrative person)
6. Helsenorge KAN IKKE DRIVES bare etter KOMMERSIELLE PRINSIPPER! Det handler om mennesker og omsorg!
7. Vi har råd til å betale oss ut av problemer, og politiske ansvarlige kan begynne å styre sykehusene mer direkte med direktiver. Feigt og umoralsk av politikerne og sykehusledelsen å skyve pasienter foran seg i dette spillet!
8. La pengene følge pasienten! Få en sammenheng mellom trygd og helse! Gi makta til pasientene!

I was on national news today

Here is original video from NRK. The piece where I appear begins about 7 minutes into the news… It’s in Norwegian, of course 😉

I’m working on the video-file, but unfortunately the written about here earlier is undergoing maintenance due to high demand (!!!).
Will post video here later with English captions…

For English speakers: the story is about the management-board at the premier hospital in Norway, the Rikshospitalet, has presented a budget proposal that will lead to a removal of CI-operations here in Oslo (see the list in the video). This piece is related to the debate going on these days. There are a lot of troubles concerning the Norwegian health-care system these days, and now the health minister, Sylvia Brustad has said that this year there will be no extra money in the budget for the hospitals. Her reaction to the problems is that “this is what I as a minister gave you, and if you spend more, well, then that’s a problem you will have to deal with yourself”. Here is an article explaining the background for today’s news-story with me as an exponent for the group that in the end will suffer because politicians and hospital-bureaucrats are not able to cooperate; the patients. Instead they are busy playing the blame-game… Shame on them! (OK, OK; it’s very simplified, and probably not an accurate picture, but it’s my opinion right now.)

It’s getting late, so I don’t have time to give you the whole picture now, but here’s a list of English news-sites about Norway

The best, the good, the bad and the ugly

Here’s some random (scrambled brain) thoughts….

The ugly side of life:
When reality bites hard, misery loves company.
Having said that, there’s always opportunities to be found, even in bad times… Just don’t freak out. Shift your weight from one foot to the other….

The bad side of life:
When life is stalled for some reason. When things happen that stops you. When you’re sick or your body won’t co-operate with you to do the things you want…

The good side of life:
Is when you have to struggle for it. To fight for sanity, your health, your wealth and your time. Because when you know you did it yourself you feel it was all worth it. That’s when it feels good to be alive… Troubles overcome is what makes you grow and learn…

The best side of life:
Is when I know my girlfriend smiles (even as we’re 513 kilometers apart).
When she is next to me, and I have complete peace in my heart.
When my kid is happy and healthy.
When the sun shines.
When I reach a milestone.
When things turn for the better….
When I don’t have to tell myself to don’t worry… To just be…

I keep telling myself… and I do stay in there… and I allow myself to be tired… but I don’t like it…

I don’t know… how to NOT THINK about where I am…

Who knows?

Posted in hearing. 1 Comment »

Not hearing all voices

Last night it became very clear to me the difference between lip reading/hearing a person I know well, and lip reading/hearing someone I don’t know that well.

I visited my best friend, Rolf, for his birthday. We almost always have great conversations, this time over a nice dinner he made. I have almost no trouble understanding Rolf. Even with a little bit of background noise (like his 4 year old daughter who wants attention), I can understand most of what he says.

cupping_earAfter a while, another friend of Rolf, Alex, also came to wish him happy birthday, and since we’ve met before we engaged in a conversation about latest news in each others lives. I could not understand very well what he said, and had to ask him to repeat almost every time he said something…

Later on, in my car on my way home again, I figured it’s no wonder why people close to me have a hard time understanding how bad I really hear. Or why it’s hard to understand how bad I hear when the surrounding sound environment is quiet. I seem to function well, yet I don’t always.

Just the thought of the day I needed to put down in writing….

What I hear (or what’s left)

It would be a good idea for me to put down some kind of status as to how my hearing is these days (as a baseline):

Without my hearing aids I can barely hear:

  • My son singing at certain notes at the top of his voice (gives me echo-effect on that frequency until I hear new sounds)
  • A tractor right outside my windows (5 meters away)
  • Only the bass from music

keep-silence With hearing aids in quiet surroundings I hear:

  • Well enough to understand spoken words with the aid of lipreading (better if my head is clear and rested)
  • When really silent: a noisy refrigerator, traffic noise outside the building, an airplane or helicopter in the sky. I get a “white noise” sound from running water.
  • My external hard-drive – the spinning disks vibrate into the wooden table.
  • Other peoples voices in the room, but cannot understand without lipreading.
  • Familiar voices on the mobile for short conversations and messages. I most often have to repeat and ask for confirmation. It’s border-line.
  • Other peoples footsteps in same building, maybe a slamming door.
  • Static noise from electrical FM-devices like my Phonak Smartlink

With hearing aids in a “quiet cafe” surrounding I can hear:

  • Spoken word if not more than 1 meter away, but I have to concentrate really hard
  • Other people speaking, but cannot make out what is said.
  • Music, but only in the form of unrecognised sounds…

 With hearing aids in noisy surroundings I hear:1728

  • All sounds are garbled and mixed in an impossible soup of noise
  • I can extract a voice from 50 cm away if noise isn’t too bad, and I know the subject and the person (if I’m used to lipread whomever, it’s a better chance of understanding)
  • Cars and trucks travelling at high speed close by me
  • Dogs barking loud

When waching a movie with sound directly into my hearing aids I am dependant on captioning. Environmental sounds like running water (splashing), wind blowing, birds chirping etc are lost completely. Spoken words are not understood at all without captioning (dialogue is most often switching and camera angles changing too fast for lip-reading to be effective enough).

Music has lost it’s magic during the last few years. I can sense the rythm, and hear most of the bass and drums. Percussion is completely gone. Perception of vocals depends on type of music and what tone the voice has. Guitar has disappeared slowly last few years, now it’s not “swinging” at all anymore…

I wrote down this, because I want to use it to compare later when I get the CI (my personal baseline).

Mentally drowned

Feeling of defeat is not a good feeling. Yesterday I attended my fathers 60th anniversary celebration and had some experiences with my hearing, or rather, the lack of hearing…

In the days up to his celebration yesterday, I had my son with me as I usually have every second (extended) weekend. This time I really had my hands full just dealing with my son. Not that he is raucous or anything. But my strengths go only to a certain level these days as demonstrated yesterday. I was supposed to bake a cake to the celebration, which I had voluntarily said I would bake. And I really wanted to do it, too. But the thing with my memory when fatigue hits is that it’s very similar to what happens when one has depression; performance is poor…

Luckily one of my brothers has gotten a knack for baking himself lately (as he is expecting his firstborn I guess his domestic consciousness arises 😉  ) and the cake supply was sufficient.

Family members who hasn’t seen each others for a few years have a lot of catching up to do. Usually I try to arrive a little early, in order to be able to have a few words with whomever gets in before there’s too many. This time the weather was bad with blizzard so the drive took it’s time…Cornered_20Kitten

I sat down in the couch in the corner (always try to avoid getting any sounds behind me) and could not distinguish anything that was being said around the table.

Being happy to see relatives, wondering what had happened in their lives lately, I guess I tried too hard in the beginning. I quickly got tired from trying to follow conversations.

My blessed super girlfriend sees right through me, and could tell how tired I became just by looking at me. She made me aware to take a rest by turning my hearing aids off. But in a situation like that it’s nearly impossible to be able to rest, because my eyes do most of the work. I scan the room to see if anybody has their eyes directed on me, if they are talking to me. And every now and then someone does talk to me, and I turn on my HA and lean forward to try to decipher what they ask me…

After a few hours I was shot… Simply shot….  No strength left, and I was on my “emergency battery”. I told everyone that I had to leave because I didn’t feel good, and I gave them a quick explanation. I’m lucky to have a understanding family.

But the feeling of defeat was quite heavy. I felt forced to withdraw before I wanted to. I hated it. But it was necessary…

Yesterday it was clearer than I ever have experienced… It is very difficult to describe the state of my condition then, but I’ll give it a try:

If you take a whole pack of chewing gum and chew on it a whole day you know you are bound to have an aching jaw, ok? This was quite a similar sensation: the side of my head felt like it had been pounded by someone with boxing gloves for a few hours. Headaches (on the sides, around my temples), a sensation of dizziness and all sounds was kind of like painful. The sounds were unpleasant and felt intruding and annoying.

Today, as I write this, my head still has this ring in it. I write this now even before I have gotten out of my bed, because I know that not before long, I will be mentally too tired to conjure any text like I want to…drown2

It’s a hellish place to be… Like being forcefully drowned mentally. And because the transition to deafness is so slow for me, I have fallen in some kind of trap, by not being able to protect (get CI) myself in time.

But here I am, and I have to take care of my son, myself, and keep on with my life. I know there is a solution for me up ahead with the CI, and it can’t come soon enough!!!

I have high hopes for 2008 to be the year when I either get word of when my first CI will be inserted…

I need it badly, as confirmed yesterday….

The sum of 2007 – Happy New Year!

As 2007 soon is history, I feel it is appropriate for me to sum it all up for myself.

Even though my hearing is coming to an end, there are, however, sounds to look forward to. And that is the CI-sound! Still have to wait for it, but in the meantime, I can take care of myself and prepare myself as best as I can.

The year 2007 gave me many good things:

  • I started really believing in a better life for myself.
  • I learned A LOT about myself and life in general.
  • I’m much more self-confident in my role as a father to my beloved son.  
  • I consolidated my relationship to my great, great super girlfriend. Thanks for being in my life, honey!!!
  • I had the opportunity to spend time with my girlfriend 😉
  • I learned a lot more about CI, and I’m even more certain that it is what I need.
  • My health improved a lot from reduced stress.
  • I did a fair share of traveling and had a lot of activities. I’ve been busy, all right 🙂
  • This blog has become a good thing for me, I also made new online-friends from it 🙂
  • I discovered that my knee(s) probably need surgery so I can exercise again. (too much pain lately). It’s a good time to fix such stuff now, as I’m waiting for CI anyway 🙂 Just hope I don’t have to wait too long for the knees to be fixed either…
  • I made a lot of new acquaintances in the CI-community, for which I am grateful…
  • My life seems to fall into place now, as opposed to a little more than one year ago, where I felt everything fell apart…
  • Took care of my eyesight (new lenses and new glasses)
  • Relationship with family improved overall.
  • I learned to cope with my tinnitus, it’s almost soothing sometimes
  • I’m reading books on a steady basis again! For many years I have been so tired/fatigued that my ability to concentrate was very poor. I used to be an avid reader of everything, and now I’m on my way back 🙂
  • I’m sleeping well again.

The year 2007 gave me a few downturns too:

  • CI surgery is still in the blue as for a fixed date
  • The music’s over for now. I get no more pleasure from it (only occasional glimpses), only more fatigue and “head/earaches” 😦 
  • Speaking of fatigue; my battery is still worn these days, it takes long time to charge and very short time to empty… But it has improved a little, and that is to me good news, really! I feel the tide turned in 2007.
  • Trouble walking stairs both up and down, thus disabling me to exercise rigorously, which was supposed to have been my project number one this year (in preparation to CI-surgery). Even swimming was painful… Will be fixed soon I hope…
  • The tinnitus became a factor that I had to deal with. It is slowly increasing in force (louder and louder), but luckily it’s a steady tone, rather than the chaotic concert it was at first…. It’s more prone to appear when I’m tired, so it’s a signal for me too, to slow down or turn off my hearing aids for a break…

All in all, 2007 was a good year for me. Happy New Year, everyone!!!

Cold on cold winters day

Still suffering from that common cold I reported on a few days back, I feel it takes forever to recover. I’m an impatient guy who hates to be slowed down. But I guess the years have given me at least a little more of that precious patience. When I grew up i was prone to get ear-infections and had more than my fair share of common cold and alike.
This time it has been a while since last round so I notice things more vividly. I am even more baffled by the impact the clogged sinuses and all other symptoms have on my hearing. Talking in a controlled environment is harder, thus giving me even more strain by communicating. Being in noisy environment communicating is virtually impossible.

I have become quite obsessed these last years about dressing myself properly to avoid getting cooled down and thus more vulnerable to catch a cold os something similar. I make sure to stay warm on feet, head and neck as good as I can. I can sense when I get bugs in my body, and mostly I feel I’m able to beat it down before I get sick. It takes a few hours sleep and a lot of heated beverage like milk with honey in it 🙂

Sometimes I wonder if I’m developing paranoia for illness, or if I’m a hypochondric…

Speaking of hypochondria, I remember when I was young I was often accused of being hypochondric, because I complained a lot. In retrospect I can understand that, and at the same time, I understand my own behaviour. What I didn’t understand was how I was affected when I had a cold. And being young and utterly impatient the feeling of increased isolation and deafness wasn’t easy to deal with.
Over the years I have slowly come to terms with all the issues concerning my state of hearing, and I have also developed this “smartness” in avoiding getting sick. I’m quicker to sense when the air is getting colder on the evening in the late summertime/beginning of fall. I know my own body better and treat it with more respect than ever before.

ist2_2899227_welness_massage_stonesI do exercises on a daily basis to prevent back and neck-pains. I have gone a few rounds with my physician, and have been able to determine that my right knee has a injury to it that needs closer attention. I guess I’m simply more bodily aware than ever before, and that is a good thing, because I need to optimize (compensate) for the secondary impacts of my near deafness on my body.

For example, my back pains originate in the fact that I use my neck to protrude my head when I have trouble hearing (you know; putting my ear out to signal that I do not hear properrly). Over the years that have resulted in a neck that does not harmonize, thus straining my back further down, causing secondary symptoms.

A course with a psychomotoric therapist and advices from my girlfriend has taught me this.

The exercises I do now really feel beneficial to me. Amount of back pain is reduced to almost nothing. Headaches caused by stiff neck and stress is reduced. All because I won’t stop trying to figure things out….

Link to Spine-Health, about common cold and hypochondria

In sickness and health

Coming from a lot of resting and relatively no stress I can feel somewhat energized. But the feeling of fatigue is less than one hour away still, and that can be frustrating. But I have come to terms with the fact that this is how it is – for now anyway. And I feel that I’m getting better a little at a time. I hope it’s not just wish-thinking…..

Yesterday I came down with a regular cold. Comes with the season, and especially when you have kids roaming in germ factories like schools.

All hearing aid users probably know this: being hard of hearing makes you a extra deaf when being “stuffed” and having to blow your nose every ten minutes or so… But for people who do not know how it is to be hard of hearing and use hearing aids, it’s virtually impossible to understand the impact of a common cold on hearing aids users. This is what I want to try and explain now.

When common cold occurs, one is likely to get an increase in internal pressure in the neck/throat region due to various swollen glands. This in turn puts pressure on internal organs in the head, hence headaches, light-sensitivity and REDUCED HEARING. When the cochlear has more internal fatigue-736871pressure where the hair-cells are situated, the gel-substance that carries the sound waves to the hair-cells is a little less sensitive. That means that the overall amount of energy that reaches the hair-cells in cochlear is being reduced.

Then there’s also the impact of all the fluids that forms in the sinuses.
With reduced hearing in the first place, such an reduction on the hearing gives a larger effect on hard of hearing, thus making us more deaf.

Aside from the normal symptoms of common cold that makes you tired, feverish and so on, it also makes near deaf’s have to put even more energy into the business of communicating.

I propose that near deaf need an extra low threshold for sickness leave from work etc. It is also important that the employer understand the fact that common cold has a stronger impact of people with hearing disability.

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