More brainwork – 3 important personal discoveries

I’m progressing well with my hearing capability, and 4 weeks after my 6 month tune-up, we’ve seen and detected some real progress in my capability to distinguish some really similar sounds. Similarly sounding vowels can be hard to distinguish when accompanied by certain consonants either before or after that vowel.

She has many lists of similar sounding words. On these lists are pairs of words with just the one vocal that varies. She speaks both, and then repeats one of them. I then say back the one repeated word, as a control. Mind you, I am a lip reader, and listening to words without the aid of lip reading is a hard thing for me to do 🙂

“De-learning” lip reading

For me this training has as much to do with learning to trust my hearing and not use my lip reading skills, as it has to do with actually hearing correctly… I’m de-learning lip reading to some extent! My brain can now utilize the hearing and let my eyes (and brain) relax a little bit more, but it needs a little help to get there 🙂

What we did during the first session after the tune-up, was to go through this one specific list. It felt hopeless, and I struggled with almost all of them. That was a kind of a baseline for me, I knew it would be better in time, but knot how much better. In the following 4 sessions we started off with that very same list.

In the Queue of my life, no 44 – (1 of 7)

Hard of hearing Ulf N. has been in line for eligibility-examination for CI (Cochlea Implant) for 18 months. That is very expensive for the state.

The IT-expert burdens the welfare services approximately 30.000 euros per year. In the 18 months he has waited the welfare costs are the equivalent of a simultaneous CI surgery on both ears. Today he is defined as deaf.
– With CI it is a well documented chance of me getting back the ability to understand speech and to be able to get back to a regular job, Ulf says. The waiting is long. It doesn’t only sap the welfare funds of money, but it also takes it toll on him as a human.

Total cost may become 100.000 euros in welfare benefits

Ulf has been waiting since January 2007. When Din Hørsel visit him in his apartment, the calendar shows 26. of august 2008. He still has a long wait ahead of him. He visited Rikshospitalet the day before and got word that he is now number 44 waiting for that all-important operation. He has received a guarantee for treatment which expires January 2010.

– If I get the surgery just as the guarantee deadline is up, I have received welfare benefits equivalent of 4 single-ear CI operations! Add into the calculation the lost tax-income for an IT-expert in productivity, costs for psychologist and other health-services, you don’t need to be a social economist to understand that it is horribly expensive for the Norwegian state  to have people with highly-sought-for skills beneficiaries of welfare.
– as a society it is an economical catastrophe! We are saving ourselves into the poorhouse, so to speak! [my comment: this statement references to the budget cuts in hospitals throughout Norway] It is utter madness that medically disabled are not treated quickly in order to get us back into work. – On a human level it is a constant state of emergency, he states.

Has something to offer in work-life

In 2006 Ulf had to cease practice in his professional life. He was then working for Telenor, the worlds fifth largest telecom-company. He had been there almost two years in a Telenor in-house program for disabled persons – Telenor Open Mind. – I worked as a trainee in the top management of the Norwegian Business division. To me it was fantastic and gave me a much needed confirmation that I have skills to offer in the work-life, Ulf tells us. After a long period of adjustments with fewer meetings and eventually days with home office, he suffered the exhaustion syndrome. He had to take the consequences of it and stop working.
– It wasn’t anything wrong with me mentally, it was my declining hearing that made me exhausted, he says.

 

…to be continued ….

My story got published

A few weeks back the latest issue of the membership magazine “Din Hørsel” (“Your Hearing”) was sent out to all members of the Norwegian Association for HoH. In this issue is an interview with none other than yours truly 🙂

I’m proud to be a small part of the fight for better medical care for people who need CI in Norway.

So far I have received no official responses to this. I keep hoping it’ll tickle into the minds of the people in positions to do something about this difficult situation that hundreds of people like me are enduring here in Norway.

I will of course translate this article to English, but you have to be patient with me, since I will be attending a school reunion this coming weekend.

I’ll be back!  🙂

Research Supporting Bilateral Cochlear Implantation

Someone heard me! 🙂

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

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

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

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

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

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

Captioned video of me on national news 27.02.2008

Having trouble embedding Overstream into wordpress…

Pls follow this link:

http://www.overstream.net/swf/player/oplx?oid=toliustbimmh&noplay=1

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!

 

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)