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.

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…

Jennifer re-activates her first CI today – true bilateral at last?

My fellow CI-blogger, Jennifer activates her re-implanted 1st CI today. I’m so excited for her, and quite optimistic. All signs points to a successful activation today. (I can afford to get my hopes way up for her 😉   ). She really deserves to luck out, since her first attempt was more or less a disaster, and she has had discomfort on that ear for almost TWO years!

Visit her blog and wish her good luck today! Or check out her initial reports if you saw this a little late  🙂

My best wishes for you, Jennifer!!!

Status update IV – early autumn 2008 – part 1 of 5

Hello again, world! Sorry for my absence lately…

It is time to summarize my condition and status concerning the CI-process again. What has happened since last time and what is current approximate time schedule?

It’s now a rough period for me. Things are heavier and I struggle with a lot of different things internally. It began this late summer. Personal life hit a speed bump and for the first time since I “hit the wall” back in 2006 I have regressed somewhat. The positive in this rough patch is that this time I’m more aware of what is happening, and I’ve been strong enough to avoid depression and destructive “artificial solutions”. This is very much thanks to the ongoing psychological therapy I continuously attend. And of course, it has mostly to do with my inner strength and my own reflections and attitude. My therapist constantly reminds me of that. It is about time I remind myself too. I feel like I have finally grown up, at the age of 36! Way to go, I say to myself. Better late than never 😉

Life in general

I have projects to keep me busy. I’m fixing up the apartment these days. Painting doors white (they had this dreadful dirty greenish seventies retro color with dark brown/black frames. Some retro is cool, but these doors were outright depressing). I paint both the frames and the door blades white and give them new brushed steel handles which is much nicer. Maybe it’s new doors of perception I am making? I certainly will perceive them differently after this refurbishment and renewal process.
I also have a long “to do-list” hanging on the refrigerator, so when I have the money for it, I’ll continue on that.
My son is at my place a lot, which is a handful for me, but very rewarding and pleasing. We have a lot of fun. Maybe I’m too much of a weekend-dad, but hey, life is too short to be an uptight authority figure all the time… My son gives my existence a real meaning. A reason to keep fighting and to stay in there.

I just started my own company. Got it registered and already have one big client which is enough at the time. Since I’m a beneficiary of a government support arrangement, I’m only allowed to earn a certain amount extra, which suits me fine. I’m not able to work that much anyway. So this arrangement is perfect at the time being. I’m starting something new, I’m keeping busy, avoiding the couch potato depression and making myself ready for post CI.-surgery.

My familys place in Sweden is a resource for me. I can do all sorts of physical labor things there, at my own pace and only the stuff I enjoy doing. It is a sort of therapy, to do practical things. When I focus at the task at hand, I can forget about the whole world and everything for a time. Things I do is various tasks with our 1959 Fordson Power Major tractor, building a tree hut for the kids (will eventually have three floors and be the hut I dreamed about as a kid 🙂  ), maintaining a patch of forest wood as a lumberjack. We’re also currently trying to fix up a garden that had been dormant for 6 years or so. We’re making a rose garden with all sorts of roses. That includes trying to make a whole new lawn on a patch that is about 25 x 75 meters.

I take kayak trips, photograph, do some woodcarving, welding, fix my car and play around in this great workshop garage that we have, fixing boat engines among other things. I play with the idea of building a go-cart for my son with a lawn-mover engine…

Also I’m making plans for the future. The business and my new company is part of that. I am now able to try it out on a small scale, make experiences, and can then make a more qualified decision when I am going back to working properly again. I look forward to that. Get out, meet people, be social, and enjoy my home and free time with good consciousness.

Mending my broken heart

It became a little quiet on my blog, and the reason is my girlfriend broke up with me. I have seen the signs for some time, so intellectually I have no problems with it, and I was consciously somewhat prepared. But emotionally it’s another story. I guess I just need to give it time. Haven’t gotten my heart to accept it yet… Difficult this stuff.

This takes it’s toll on me, so I’m currently on survival mode again.

SO, it’s official, my heart’s broken and I’m licking my wounds and mending my broken heart as well as I can. Luckily I have a good family and good friends who ask and are concerned. That is the kind of human support I have learned to value highly the latter years.

So, to everyone who cares: THANK YOU for your support! It makes my life so much more bearable these days!

(and I’m not abandoning my blog, rest assured 🙂  )

 

Hugs to everyone!