Find new subtitles in a whiff!

Open Source Project for finding subtitles

When TV-networks doesn’t caption their popular shows, deaf and people with reduced hearing are discriminated. On the Internet and by the use of home computers, there is a way around this. Most of the activity related to this is by copyright laws and such, regarded as illegal in various countries. I will not explain any of this (or encourage to break any laws), there is plenty of knowledge to find on Google on those subjects. Here’s a good starting point, though…

What I intend to do with this article is to let my readers know about this Open Source Project for making a program where subtitles to movies and TV-series can be found without having to resort to various subtitle search-engines… (here’s the definition of Open Source in case you’re wondering)

There are a lot of people around the world who simply do their own captioning of various shows, by way of subtitle editor software (there are many kinds of such software). Their work are spread via various Internet subtitle-sites, to the enjoyment of people like myself. These subtitle files now have a new way of distribution, thanks to the project I’m writing about here.

The program is called SubDownloader and I have tried it for some time, and I feel more people should know about it…

Captioning videos @ Overstream.net!

One of my CI-blogfriends, Abbie (Chronicles of a bionic woman), recently created this captioned CI-activation-video! For all of us who can’t understand spoken words very well, this is a gift!
Thank you Abbie, for letting us really participate in your experience. I learned a lot just from understanding what your audie says!!!

I saw this video uncaptioned, and didn’t get much from it, but that changed with the captioning!!!
For all of you who can hear, watch this, and remember that the ear Abbie is hearing on this video used to be deaf!!

I’d also like to give attention to the online-site that make captioning possible:

Overstream.net KUDOS!!!!

All you videobloggers and video-posting maniacs out there: please caption your videos if there are dialogue or even sign-language!
Make the world a richer place for all those who cannot hear well (or read sign-language)!

Technorati Tags: activation,ci,cochlear implant,captioning,captions,bionic,cyborg,hearing

Vestibular disorder symptoms I have experienced

I came across an interesting website for an organization called VEDA (VEstibular Disorder Association).  I found this list of possible symptoms that is very interesting.

Image copied from “vestibular system.” Online Art. Encyclopædia Britannica Online. 23 Jan. 2008
Here is an explanation of the Vestibular system.

I did not initially place all these symptoms into the same category (i.e. having to do with my hearing), but maybe I should have??? I exctracted the whole list and will excempt (a strikethrough line) those not experienced by me. If commented, the comment has been marked like this.

This list was a revelation to me… It all fits, kind of… Seems it connects to the wiring of the vestibulo-cochlear nerve: the nerve that carries information from the inner ear to the brain. Also called the eighth cranial nerve, auditory nerve, or acoustic nerve. If the “recruitment”-theory in my previous article holds water, the information about these symptoms could also have some bearing on the subject of my condition.

Vision

• Trouble focusing or tracking objects with the eyes; objects or words on a page seem to jump, bounce, float, or blur or may appear doubled
• Discomfort from busy visual environments such as traffic, crowds, stores, and patterns.
• Sensitivity to light, glare, and moving or flickering lights; fluorescent lights may be especially troublesome Very much so!
• Tendency to focus on nearby objects; increased discomfort when focusing at a distance
• Increased night blindness; difficulty walking in the dark Yes, have to find walls or points of support in order to be able to move, get a complete feeling of immediate disorientation
• Poor depth perception

Hearing

• Hearing loss; distorted or fluctuating hearing Well, that’s not exactly news…
• Tinnitus (ringing, roaring, buzzing, whooshing, or other noises in the ear) Very much so!
• Sensitivity to loud noises or environments Especially high pitch like childrens voices
• Sudden loud sounds may increase symptoms of vertigo, dizziness, or imbalance Yes!

 

Explaining the analogy: "Recruitment" of hair cells in cochlea

During my research into my own declining hearing- and health condition, I came across information about a phenomenon regarding hair cells in cochlea called “recruitment”. I strongly suspect “recruitment” is what happens to me. It certainly would explain a lot of the things that happen(ed) to me and my hearing and the fatigue…

(Most of the text that follows is copied from this page at hearinglosshelp.com and edited by myself for the sake of this blog and my readers.)

What is “Recruitment”?

Very simply, “recruitment” is when we perceive sounds as getting too loud too fast. How is it possible to hear too loud when the hearing in fact is vanishing, you may ask… Well, be patient with me and read on…

“Recruitment” is always a by-product of a sensorineural hearing loss. If you do not have a sensorineural hearing loss, you cannot have “recruitment”. In simple layterm this means that this condition only affects those who have a significant loss of hearing caused by haircell-damage in cochlea (mainly).

As a sidenote; there are two other phenomena that often get confused with “recruitment”. These are hyperacusis (super-sensitivity to normal sounds) and phonophobia (fear of normal sounds resulting in super-sensitivity to them). Both hyperacusis and phonophobia can occur whether you have normal hearing or are hard of hearing.

An analogy for understanding how “Recruitment” got its name

Perhaps the easiest way to understand “recruitment” is to make an analogy between the keys on a piano and the hair cells in a cochlea.

The piano keyboard contains a number of white keys while our inner ears contain thousands of “hair cells.” Think of each hair cell as being analogous to a white key on the piano.

The piano keyboard is divided into several octaves. Each octave contains 8 white keys. Similarly, the hair cells in our inner ears are thought to be divided into a number of “critical bands” with each critical band having a given number of hair cells. Each critical band is thus analogous to an octave on the piano.

Just as every key on the piano belongs to one octave or another, so also, each hair cell belongs to a critical band.

The requirements for “Recruitment” 

When you play a chord on the piano—you press two or more keys together but they send one sound signal to your brain. Similarly, when any hair cell in a given critical band is stimulated, that entire critical band sends a signal to our brains which we “hear” as one unit of sound at the frequency that critical band is sensitive to. This is the situation when a person has normal hearing.

However, when we have a sensorineural hearing loss, some of the hair cells die or cease to function. When this happens, each “critical band” no longer has a full complement of hair cells. This would be analogous to a piano with some of the white keys yanked out. The result would be that some octaves wouldn’t have 8 keys any more.

Our brains don’t like this condition at all. They require each critical band to have a full complement of hair cells. Therefore, just as any government agency, when it runs short of personnel, puts on a recruitment drive, so too, our brains do the same thing. But since all the hair cells are already in service, there are no spares to recruit.

Getting to the point – what “Recruitment” means

What our brains do is rather ingenious. They simply recruit some hair cells from adjacent critical bands. (Here is that word: recruit or recruitment.) These hair cells now have to do double duty or worse. They are still members of their original critical band and now are also members of one or more additional critical bands.

With only a relatively few hair cells dead, then adjacent hair cells may just do double duty. However, if many hair cells die any given hair cell may be recruited into several different critical bands, in order to have a full complement of hair cells in each critical band.

 

 

The results of the phenomenon known as “Recruitment” – the conclusion

The results of this “recruitment” gives us two basic problems. (notice the underlined parts!)

1. The sounds reaching our brains appear to be much louder that normal. This is because the recruited hair cells still function in their original critical bands and also in the adjacent one(s) they have been “recruited” into.

   Remember that when any hair cell in a critical band is stimulated, the whole critical band sends a signal to our brains. So the original critical band sends one unit of sound to our brain, and at the same time, since the same hair cell is now “recruited” to an adjacent critical band, it stimulates that critical band also. Thus, another unit of sound is sent to our brains. Hence, we perceive the sound as twice as loud as normal.

   

   If our hearing loss is severe, a given hair cell may be “recruited” into several critical bands at the same time. Thus our ears could be sending, for example, eight units of sound to our brains and we now perceive that sound as eight times louder than normal. You can readily see how sounds can get painfully loud very fast! This is when we complain of our “recruitment”.

   In fact, if you have severe “recruitment”, when a sound becomes loud enough for you to hear, it is already too loud for you to stand.
   

2. The second result of “recruitment” is “fuzzy” hearing. Since each critical band sends one signal at the frequency of that spesific critical band, when hair cells get recruited into adjacent bands, they stimulate each critical band they are a member of to send their signals also. Consequently, instead of hearing just one frequency for a given syllable of sound, for example, perhaps our brains now receive eight signals at the same time—each one at a different frequency.

   The result is that we now often cannot distinguish similar sounding words from each other. They all sound about the same to us. We are not sure if the person said the word “run” or was it “dumb,” or “thumb,” or “done,” or “sun,” or? In other words, we have problems with discrimination as well as with volume. If our “recruitment” is bad, our discrimination scores likely will go way down.

   When this happens, basically all we hear is either silence, often mixed with tinnitus or loud noise with little intelligence in it. Speech, when it is loud enough for us to even hear it, becomes just so much meaningless noise.

   This is why many people with severe recruitment cannot successfully wear hearing aids. Their hearing aids make all sounds too loud—so that they hurt. Also, hearing aids cannot correct the results of our poor discrimination. We still “hear” meaningless gibberish.

   However, people with lesser recruitment problems will find much help from properly adjusted hearing aids. Most modern hearing aids have some sort of “compression” circuits in them. When the compression is adjusted properly for our ears, these hearing aids can do a remarkable job of compensating for our recruitment problems.

Technorati Koder: recruitment,fatigue,disorder,hair cells,cochlea,deaf,deafness,hard of hearing,understanding hearing loss

Dreams with captioning?

Ever imagined getting captioning in your dreams? I received a question from one reader yesterday that made me analyze my way of dreaming.

The question was wether I hear sounds in my dreams or not, being almost deaf and having lived with hearing aids since the age of 4. As opposed to people who has been deaf all their lives, and report that their dreams has no sounds.

I couldn’t answer the question inpromptu, since said questioneer never left any contact-information, but hey, it’s an interesting issue and since I had a very vivid dream last night, I might as well make a little post of it

The dream last night involved high speed car driving, a big explosion, some nature and various scenery (sort of like an industrial site, maybe an open mine). I can definitely say that I dream in colour! The car was a black Aston Martin Rapide, the grass was vividly green, the tarmac was black with white and yellow stripes on it and fences had a colour of metal (among other things).

As for sounds, most of the action was without sounds (no engine sounds, no screeching tires etc), but I dreamt that the car had a 26″ grenade shell (!) with it (plus a smaller one, for some reason). It was the kind of grenade that is loaded into huge cannons and it was compromising evidence that needed to disappear after a traffic incidence (because of the wild driving, I guess). So the car (with my son in it, for some reason) sped away from me after it had rolled sideways down a grass-slope. The driver needed to find a remote area where the grenade could be detonated and hence be disposed of…  (I know, it was a wild dream!!! hehe )

And this is where I get to wether I dream in audio or not. I dream in audio a little bit, because I remember that I heard the explosion (I did not see it), and started to run towards the origin of the sound.

So there you have it! Mostly I dream in facial-expressions, peoples actions, my actions (like running, trying to run, flying or trying to fly etc) and with colours. Not so much with sounds, although sometimes, and almost never (afaik) in actual conversations. I guess I’m a very “visual” kind of dreamer….

And no, I do not have dreams with subtitles, allthough that would be nice

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

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:

• 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).

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.

I 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

Technorati Koder: hypochondria,common cold,health,sick,paranoia,exercise,back pains,near deaf,hoh,hard of hearing

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 pressure 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.

Technorati Tags: sickness,fatigue,health,understand hearing loss,near deaf,cold,common cold,symptoms

Dreaming deafness

Woke up early today from a vivid dream…

I was at a banquet or an award show or like, and the hostess and host of the show somehow pointed me out among a lot of people and started making their way towards me.
That would normally be the last thing I would wish for, as I have had a lifelong fear of appearing stupid in case I answered wrong. (you know, if I didn’t hear the question properly, I would answer something else, thus making it funny for everyone…)
With microphones jammed up in my face and spotlight zooming in on me along all the attention from everyone present, they started asking me easy questions I was able to answer ok, you know, to warm me up… 
Then the guy came “to the point” and halfway into his question I lost him completely. That would be where I normally wanted to sink into the ground and die of shame or embarrassment. In this dream I just said: “I’m sorry, I didn’t hear you.” Being very calm inside, laid back and not stressed, I waited for their next move. Somehow the social pressure on me was gone, because they had a show to pull off, and by picking me the “joke” was on them. I could see the guy lost his nerves and didn’t know what to do. At such instances I feel terribly sorry for the person, and want to help, but in this situation they were interviewing me, and I could not help by taking charge of the conversation as I normally would.
The woman stepped in for a try and she failed too…. then I woke up, wide awake…

This was a weird good dream for me. Can’t remember last time I had a dream about being out there publicly. And the thing that hits me about this dream is that I’m just being me and honest about it (that I can’t hear everything), unlike before in my life, where I’d have a number of strategies for “handling” such a situation, thus “saving face”. Doesn’t matter what kind of situation I’m in, I’m who I am… Near deaf and all

I think this dream was some kind of milestone for me.

Technorati Tags: dream,dreams,deafness,deaf,psychology,dreaming

Battling tinnitus, headaches and fatigue

While living my life, with the absence of the working life strains, I still have to deal with stuff that is quite heavy.

First out is the tinnitus. Coming on strong in the evening and especially before sleep, I can feel the phase-shift as I have taken out my BTE HA (behind-the-ear hearing-aid) and the sound-world has disappeared.
After only a few minutes the concert starts with mid-level frequency sounds (where I have never ever had a sound chart reading above 110 Db) trying to find the right tune, just like violinist warming up before a show. The level of sound varies a little, and I have different sounds in the right ear from left ear. In short: a cacophony just as a whole orchestra is warming up before a concert…
Sometimes I get a spike of sound. A sound very distinct almost like the ping sound a submarine uses in it’s sonar just lasting a little longer. And that sound startles me every time, since it’s very loud. And it pops up in both left and right ear totally randomly.

Then there’s headaches. I get headaches almost daily for what feels like very different reasons. Sometimes it’s the overload of sounds either in loudness or in durability. Other times it’s strain headaches from stress from various situations, or just plain stiff neck. And the wintertime low sunshine on clear days can also induce headaches. Seems like I have a low tolerance for headaches. Just checked my brain with MR and x-rays and all results came back negative, which is good news. One less thing to worry about.
I have taken some actions to fight the headaches, and I think I’m on the right path. I have started doing exercises for my neck. And I’m doing it very slow and careful now in the beginning, as I get headaches from doing these simple exercises.
Most HOH and near-deaf people have one thing in common: we move our head forward as to signal to anyone that we need to hear better. I think it is also an instinct in order to make the distance between us and the source of sound as short as possible.
My neck is  very agile going forward, but back and to the sides, it’s as stiff as a stick…. So these exercises, bending my head back and forth, from side to side, and rolling my head slowly around are having an impact… I can feel the cracking of neck-bones and the headaches come bad right away, which I think is the rush of blood extending the blood vessels in my head. And my head isn’t used to those extending blood vessels, thus giving me headaches… I hope it’s temporarily, because if it is, I know I’m on track of doing something that will improve my day to day shape.

Then we’re on to the fatigue… Tinnitus and headaches clearly attributes to the fatigue, no doubt. I have also recently heard about a phenomenon called “recruitment” that could explain the sensations I get from my ears and the following feeling of fatigue and exhaustion. Will read more about that later, and research it too. See link to the article I found under the heading: “Special Subjects”.
Depression is also a common factor resulting in fatigue… Am I depressed??? I really am not sure… Sometimes, yes I would say I’m depressed, other times I’m as happy as a lark in the sky singing away… So, you tell me…

Technorati Tags: recruitment,near-deafness,symptoms,life,hearing,tinnitus,psychology,coping

Fatigue epiphany

Just back from a session with my psychologist, where I dealt with the matter of fatigue. I learned something new about myself, and I guess this knowledge could be useful to many who are hard of hearing or near-deaf.

The state of fatigue is the subject that I want to raise here. Of course fatigue can have many reasons, both external, internal, material and spiritual. I want to discuss the mental aspect of it that became very clear to me today: When I get the notion in myself, that I’m tired, it starts a whole range of other reactions:

Emotions:

• anxiety (am I sick, is something wrong with me?)
• stress (what did I do to become so tired??? why is this happening?)
• sadness (the feeling of fatigue sort of disables me from being energetic, joyful and contributing to my surroundings)
• hopelessness (damn, is this how my life has become? Is this how I’m supposed to live my life???)
• and many more… (it is a little chaos of mixed emotions)

The emotions manifests into:

• Stomach feels like a brick, hard and heavy
• Neck becomes stiff
• Sensations of pain are more prone (backache, headache, muscle and tendons)
• A constant state of emergency (to put it short)

Last week, when I spoke with my incredifaboulofantastic girlfriend about this subject, we agreed that when I have the notion of being tired, I should simply say; “I need a break”.

This was the genius of it: instead of saying that:

“Oh, I am tired, I need to go by myself and be more tired” (thus pushing myself even further into the mental state of fatigue),

I can say, “Oh, my senses had a handful, they need a little rest, and then I’ll be fine again”.

By digging into the notion of fatigue, and really FEELING the weight of the emotions, I have also become more aware of what is happening to me in terms of thoughts, reactions and the results of those… This way; I can make a difference in myself by avoiding chains of thoughts that give me negative emotions and drain me even further of the precious energy I need to cope with the present situation of being near-deaf…

I hope this means something to someone, because it was an epiphany to me!

Technorati Tags: psychology,deafness,near-deafness,rehabilitation,health,life,fatigue

Midlife – on new paths

A pilgrim walking alone
Memory of a time lost
Seeking purpose, connection
From here on

A lot said and done
Not all undone
Lack of time lack of sight
Thinking; time heals all

In breath and movement it still sits
Unleashed, untouched made to ice
Inner frost, loneliness and grief
Pushing for release

New sounds, and paths
Demands new compass and maps
A lone pilgrim still walking
Towards greater insight of body and mind

“Midtlivs – på nye stiar” by Inger Anita Herheim, freely translated from Norwegian by Ulf Nagel

Status update

Tinnitus is still there, disturbing concentration and sleep. The left ear seems to want to join the debate as to wether the hair-cells in my cochlears are about to wither and die or not… For the time being, the tinnitus is bearable because it’s inaudible during the time I wear my hearing aids (HA). But I have noticed times when the tinnitus breaks through even when I wear my HA. So the signs is that the tinnitus will not subside or fade, on the contrary…

Fatigue is still severe and limiting my activities on a daily basis. However, I have now organized my life in order to have less activities, and it feels good. I get more ability to initiate things I want or need to do. I still have to do a job regarding my own mentality towards the fatigue (how I cope with the feeling of being “empty”), but having said that, I have now eliminated most possible external causes for the fatigue.

Bilateral CI-operations are still my number one priority in the long term. In short term it is my son, girlfriend, family and myself. As for the CI, I do research, talk to people, evaulate back and forth. I have also checked out the status of stem-cells research of regenerating hair-cells in the inner ear, and the conlusion is that it is indeed exciting and promising, but not plausible to expect within the next 10 – 15 years. That rules out stem-cell therapy on my part. If I by getting bilateral CI-implants ruin the possibility of stem-cell regeneration of my cochlear hair-cells, so be it. I live now, today! That will be for the next generation of deaf and near-deaf.

I mentioned music in a posting yesterday; The music’s over – for now… Since I started this blog, the time spent listening to music has declined automatically and quite evenly as I started reducing the strain on my ears as an experiment. It requires too much concentration of me to listen to music anymore. Before I could get a kick out of music even when relaxing. Today I need to really focus and also have the lyrics in order to “get” something from the song I’m listening to… After a very short time it starts to feel like my head has been through the washing machine…

(Reminds me of “It’s all gone – Pete Tong” – a movie about a DJ who looses hearing)

Symptoms from too much sounds:

• Pounding and pulsating sensation in head (brain?)
• dizzy (I’m even getting troubles with balance if I overdo listening),
• my counscious level is reduced (like I’m sleepy but I’m not),
• concentration has diminished (harder to follow what people say to me, I concentrate harder),
• cognitive skills reduced drastically (I know this thanks to my un-scientifically measurement method using Su-Doku)

and…  I suspect I’m getting mild migraine from time to time, even though that could be related to the fact that I quit nicotine permanently 18 months ago. My brain is perhaps still adjusting to the fact that my blood-vessels are getting sound and healthy again. The migraine-tendency could be caused by dilated blood-vessels in my brain, and if this is the case, those pains will subdue soon… Prone to light-sensitivity, I also turn down the intensity of lights.

On a personal level, my life is good, I enjoy being a father, and have a wonderful girlfriend with whom I can spend time. My family is close to me, and somewhat engaged in my condition. Friends still keep in touch with me. I’m feeling active and engaged, working on several “projects”, including this blog and fixing up my apartment and helping my mother and stepfather with their recently aquired small-farm. I keep in touch with former employers, and have moral support from them, have several contacts in the near-deaf-community and so on.

The Doors – When the music’s over

Recently I have stopped listening to music on a regular basis. This saddens me deeply, and I feel it will be fitting to take a moment to mark the transition to real deafness with a piece of music made of a band I truly enjoyed listening to: The Doors. Even more befitting is the song I selected… Hope you enjoy it more than I am able to!

(Mind you, I will be able to hear music again if the CI-operations go well!!!)

Lyrics:

Yeah!

When the music’s over
When the music’s over, yeah
When the music’s over
Turn out the lights
Turn out the lights
Turn out the lights

When the music’s over
When the music’s over
When the music’s over
Turn out the lights
Turn out the lights
Turn out the lights

For the music is your special friend
Dance on fire as it intends
Music is your only friend
Until the end
Until the end
Until the end

Cancel my subscription to the Resurrection
Send my credentials to the house of detention
I got some friends inside

The face in the mirror won’t stop
The girl in the window won’t drop
A feast of friends
“Alive”, she cried
Waiting for me
Outside

Before I sink into the big sleep
I want to hear, I want to hear
The scream of the butterfly

Come back, baby
Back into my arms

We’re gettin’ tired of hangin’ around
Waitin’ around, with our heads to the ground
I hear a very gentle sound

Very near, yet very far
Very soft, yeah, very clear
Come today, come today

What have they done to the Earth?
What have they done to our fair sister?
Ravaged and plundered and ripped her and bit her
Stuck her with knives in the side of the dawn
And tied her with fences
And dragged her down

I hear a very gentle sound
With your ear down to the ground
We want the world and we want it…
Now
Now?
NOW!

Persian night, babe
See the light, babe
Save us!
Jesus!
Save us!

So when the music’s over
When the music’s over, yeah
When the music’s over
Turn out the lights
Turn out the lights
Turn out the lights

Well, the music is your special friend
Dance on fire as it intends
Music is your only friend
Until the end
Until the end,
Until the end

CI nagging round 3

After new rounds with both Rikshospitalet and Haukeland I have reached a decision. Rikshospitalet asked if I was willing to be operated at Haukeland within 6 – 12 months. For several reasons, I declined to that very tempting offer. Given my situation, I need a solution quick, but Haukeland could not meet my first priority demand. And that is to get the Advanced Bionics Implant (see link in my Blogroll on the right side of this Blog). Apparently Haukeland only offers the Austrian “MedEl” or the Australian “Cochlear”, while Rikshospitalet also has recently started offering Advanced Bionics to their patients.

To me the prospect of (among many other advantages and future possibilities) being able to listen to music with 120 frequency bands as opposed to the “regular” 22 frequency bands the number one reason. Other reasons to decline the offer on going to Haukeland and get the thing done ASAP is the fact that all follow-up afterwards has to happen in Bergen where Haukeland is situated. Being the proud father of  a 7 year old boy, that will present some practical problems during that period of up to one year.

I got in touch with the right people at Rikshospitalet, finally, and I even spoke to them face to face in their office, so now I know who to contact, where to visit them and the communications has been established and a lot of uncertainty has been eliminated.

Now I know a lot more about the future years. I am currently at abouth the 100th person on the list to be operated, and Rikshospitalet operates about 2 patients a week. I will have to be patient (pun intended :-)  ).

At the time I managed to establish communications witht the right people at Rikshopitalet; I also had found out about a government-funded foundation that has been established to finance people (like myself) who could be working, but needs healthcare-services today rather than later. The Foundation is called “Raskere i jobb” (”Faster back to work”) and hasn’t been fully implementet as of yet. It’s a current ongoing process of setting up rules for the foundation as well as getting the funds released to the various hospitals. I don’t think the money can be used in a foreign country, but maybe??? I will have to investigate more and get back to that.

I asked Rikshospitalet that they considered my name in regards to those extraordinary funds, and that I also be considered for a simultanous bilateral (on both ears at the same time) CI-operation. I will write more about the 1 versus 2 CI-implants at a later time and why I’m willing to do it. They have answered and told me they will get back to me.

I expect to have to fight for getting bilateral CI-implants as the consensus today is to operate only one implant at the time. Bilateral CI-implants has only been given as part of research to understant the difference between unilateral and bilateral CI-implants. I have yet to se any real scientific works about that subject, but as a hearing-aid user, I frequently had to turn off one of mye hearing aids, making me an temporarily unilateral hearing aid user being deaf on the other ear. I KNOW THE DIFFERENCE and I will advocate that difference even through my lawyer at HLF Norway if need be! (she is a lawyer for all hard-of-hearing and near-deaf in Norway)

All senses alert

Lately I’ve been plagued with tension-headaches and extreme fatigue. The headaches I cannot pin down to one cause, same goes for the fatigue-episodes. It seems like all my senses are so alert that it’s on the verge of being hypersensitive…

That goes for mye hearing too….  I’ve had to stop listening to music, alltogether. Only a short time of music gives me headaches. And I turn off the hearing-aids as much as I can…

I will monitor my eyesight much more often and I will start to use contact lenses in the hope that it will lessen the strain on my eyes… It’s obviously very important for me to eliminate any cause for unneeded strain on my senses, since the fading hearing clearly does something to me.

I’ll report first impressions after contact lenses has been used for a few days.

an allegory of the last string of hearing…

Recently I have tried to explain to people close to me how it really feels to loose the hearing the way I do. And I have become quite inventive and in the light of my newfound inner strenght, I have also found the courage to be honest about it to myself as well.

In that aspect, I keep getting these epiphanies. Here’s one in the form of an allegory:

Imagine a ordinary glowing light bulb. Most of us have experienced that sometimes they get this extra light strength.  You know it’s a dying light bulb… And if you turn the light off and then attempt to turn it on again, it won’t be glowing anymore. The bulb had a glorious shine before it died.

The same way, only in a longer timespan, it feels with my hearing. I complain about my mother’s high voice, or when kids yell like they’re 20 meters away from me even though they sit next to me. It is close to painful, and it makes me quickly more tired. Other adults around me do not react

I think my hearing-aids creates sound that is a little too much for my hearing organ (the eardrum and the connected parts that form my inner ear) to carry. It worked for a time, but with every new generation of new hearing aids, I crank up the volume a little. Now it’s obviously enough. On top of that, I think my brain desperately tries to wring every decibel out of my ears. That gives a combination of cranked up hearing-aids and a brain running wild!

It might be that my brain actually overcompensates and give me a form of oversensitivity as the last remnants of my glion hair cells  in the cochlea slowly are becoming unable to transmit the effect of sound vibrations…

T his is merely an attempt to explain how it feels and how it is. In time I hope I will find even better allegories or ways to illustrate the process I’m in….

I’ll keep searching for an understanding and an explanation…

Hard to understand?

I just read some of my former posts…  And one thing suddenly occurred to me as a difficult thing to understand; the fact that I get tired of what could be best described as faint noises… How is that possible when I’m so hard of hearing and next to deaf?

Well, the explanation is that the hearing aids I use are tuned to it’s maximum, perhaps a little over the top too…. For me a tractor working on a field a couple of hundred meters away from where I sit is audible (and annoying). The refrigerator has been mentioned. I pull out my hearing aids and listen to the tinnitus instead, it is less tiring actually.
All the faint sounds represent sound pollution to me. Since I need to rest (my hearing) when I’m not communicating verbally or when I have the (nowadays) occasional music listening experience, those faint sounds becomes obsolete sounds. That is by definition noise, to me.

My brain constantly seeks better understanding of the sounds it receives, and thus drains my resources constantly. That is how it must be. But when almost all the hearing has gone, the brains tries to compensate by working harder. My eyes (aka curiosity) seek out visual confirmation of the audio-signals the brain receives.

The hearing aids are designed to enhance ANY sound it receives. It has no way of making a distinction between noise and needed sounds. THIS fact causes overload on my hearing organ and my brain, since this is a constant condition.

The brain is the most fascinating organ in our body, as it is able to compensate and change during our lifetime. Loss of hearing causes other senses to kick in stronger, and when sound is still present, the brain will obviously continue to make the most of it.

The problem presents itself when I, as a human being, are met, and lives with demands that is contradictory to the auditory loss. Add the strains of everyday life in terms of stress, work, rush hours, information overload etc etc, and you have the recipe for a brain blackout if one is not aware of the danger of it.

Plus, I have to work extra hard to communicate with everyone around me. In that I have no choice. It is not an option to isolate myself from the real world where people I love and care for are. If I do that I am certain that depression and darker days will follow. That makes things worse.

Pre-sleep-phenomenon

Oh yes, I have for a long time wanted to describe a re-occurring  phenomenon that takes place just before I fall asleep. Obviously I have taken out my hearing aids some 10 to 20 minutes before…

It is like a switch is being flicked inside my ears and head. Difficult to describe, but I will try…

Imagine you are on a voyage in a plane or a boat which makes a constant high-pitched engine-noise. This voyage takes all day long, and the noise is there all the time. And just before you fall asleep, someone turns that noise off like magic. It’s like landing on soft cotton-clouds after being tossed and heaved around all day… I can feel a “wave” of electric current sweeping from the front of my head to the back, very quick. It’s like the shock of icy-cold water thrown on your head while lying down, only that this sensation is rather pleasant…. Does this makes sense?

This sensation occurs every night just before I fall asleep. When it happens, I know that I’m seconds away from sleeping…. Very pleasant and soothing.

If anyone has experienced similar, I would like to know. If someone has an idea something might explain this phenomenon, I want to know…. 

Interest Organization for Hard-of-Hearing in Norway (HLF)

HLF (Hørselshemmedes Landsforbund www.hlf.no) works in many ways. One field they work with is by influencing politicians and legislators or more commonly known as lobbying. One aspect of this political work, is to help the various systems understand and see where the problems are.

They publish a magazine. Work with the membership records to keep the organizational data up-to-date. Organize meetings for volunteering hearing-aids users that want to help other people who are just starting to use hearing aids. (”likemannsarbeid” – “common fellow work”)

HLF also runs a school (Briskeby) and holds several seminars and courses for people with hearing disabilities. They also aim at being Norways center for knowledge about - and to have high competence about - hearing-disabilities.

Tinnitus and Mèniére are also in the HLF’s sphere of interests.

In short: everyone who isn’t part of the deaf community, has a home at HLF.

Link: www.hlf.no