Combining gene-therapy and CI? Hmmm, interesting!

Combining gene-therapy and CI? Hmmm, interesting!

Maybe this could have cured or lessened the impact of the tinnitus that I have too? Too bad this kind of research takes ages….

Starting a new blog–in Norwegian

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

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

Another chapter…

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

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

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

The price to pay

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

My health, post-CI

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

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

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

Rebound

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

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

CI and sign-language?

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

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

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

Ambient noise wears me out

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

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

The biggest part of sign-language

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

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

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

 

to be continued….

Hørselstap – sorg og aksept, stress og mestring

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

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

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

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

Convention on the Rights of Persons with Disabilities

2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

4,329 films were submitted to the 2012 Cannes Film Festival. This blog had 16,000 views in 2012. If each view were a film, this blog would power 4 Film Festivals

Click here to see the complete report.

The tinnitus I hear – all the time

I just came across some sound-samples that simulate my own tinnitus. I wanted to share them, so perhaps people around me better understand why I am tired or unable to participate in social activities.

  1. This is similar to the "quiet" tinnitus that I have all the time 24/7 
    (I can barely hear this sounds when I listen to it, so I guess it’s pretty close to my own)
  2. Also barely audible to me, meaning it’s similar to my own
  3. Whistling sound
  4. This one is totally inaudible to me, meaning that I have this as tinnitus for sure…
  5. Screeching
  6. I also have “white noise” kind of tinnitus, but all the examples I have found are too high i frequency, so “white noise” with deeper frequency is another example (you just hafve to imagine the sound)
  7. All these above combined, and you might have a sense of the cacophony that is in my head at all times…

tinnitus

The only time I don’t have tinnitus, is when I am so preoccupied with something else that I “forget” it, or when I sleep.

Tinnitus get’s worse (more loud and more “present”, harder to ignore) when I have slept bad, or when I am getting more tired or sick like with a flu.

Why do I have tinnitus, even with CI’s?

I have been thinking back, trying to get a clue as to the reason why my CI-operations didn’t “solve” or remedy the tinnitus problem, and have worked out this theory:

from bad comes goodFrom around 2000 and onward, I cranked up the sound volume on my hearing aids every time I had a control or new hearing aid or simply needed adjustments. The result of this cranking up? I walked around with an aproximate loudness of 100 dB to 120 dB and more for 10 years! This might have resulted in the development of recruitment (norsk), hyperacusis (norsk), even more hearingloss (aka more rapidly deterioriating hearing) and tinnitus.

Furthermore my theory is that all these years of unusual loud sounds coming from my hearing aid, resulted in my brain (the parts receiving and processing the electric nerveimpulses of sound) underwent some structural change or that my sensorineural system developed some kind of damage. I am not a neurologist or expert in any medical field, so these are a laymans theories…

I feel that the health services in my country failed in providing adequate help to me in a reasonable time-frame. Maybe I could have been without the tinnitus, had I been helped 5 years earlier… I’m not bitter, I just want others to learn from what happend to me. And to prevent others to have to deal with the same things, if it’s avoidable…

Going deaf – twice

beethoven-777x934In many ways, the process I have been in after the second operation has been about accepting that I am nowin fact deaf. Yes, I can hear with the CI, but I can’t use them (to hear) all day. In fact, two – three hours per day is my present maximum dose of sound. I have to learn to live a large part of my life as a deaf person. Also it’s not just me, but my family has to learn to have a deaf person around them too.

Learning sign-language at Ål – School for deaf

pMy wife has identified the need for us all to learn sign-language. I have been too stubborn to realize it or initiate it. At the same time I have always been open to it, thinking that refuting something that might actually help, just because I don’t want to be deaf, is a counterproductive thing to do. So I am open to it, and we actually went to our first week of school, for the whole family, to learn sign language just a few weeks ago.

It was an eyeopening experience, and we will learn to sign in our family.

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