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….

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Hearing Loss Linked to Three-Fold Risk of Falling – 02/27/2012

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.

therapy-sessionShe 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.

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Tinnitus stress management and other things CI

Spring_webSpring is right around the corner and the sun is shining upon us again 🙂 This winter has been put to very good use by yours truly. I’ve learned to hear again!
I consolidated with my fabulous girlfriend, and we have purchased an apartment together :-) 
I got a better relationship with my son, being able to really TALK with him. (and bringing the right responses, now that I’m not always tired out of my skull).
And I have taken up cross-country skiing again. It was more than 15 years since the last time I roamed the ski tracks in the Norwegian woods 🙂

6 month re-map milestone

I had a re-map a week back. That was my 6 month appointment. This time we increased the volume of all frequencies again. In addition to that, I have now one program with increased Dynamic range (70%) and one program with decreased Dynamic range (50%).

Dynamic Range is the range of frequencies that are accepted into the implant by the microphone and processor. 50% means that 25% of the frequencies are not used in either side of the frequency range. (meaning both very deep bass and very high pitch is reduced, keeping only the sounds in the middle.)

I had 60% the last few months. I use 70% mainly, find it much more pleasant to hear as much as possible. But it is tiring too, it takes time for the brain to develop noise filter skills. So the 50% program is used when I am tired and need to shield myself from some of the ambient noises around me.

blurred-reflections Ambivalent regarding current sound quality

I am not happy about the quality of sound… After this mapping it feels like I took one step back in terms of speech comprehension. When I switch back to my previous program (yes I kept that one, think it was a good move in terms of motivating myself) it just sounds really, really bad. So the new adjustments are definitely a step in the right direction, but it seems like every time re-mapping frequencies are done, my brain needs a new time of adjustment… Tiring, somewhat de-motivating and a little bit frustrating. But these issues are, by all means, peanuts compared to what lies behind me at this point. I am simply super-impatient. 🙂

The speech of others are super crisp, sharp. It is hard to get used to, after decades of dull, watery “cottonish” mumble-jumble. It is kind of like touching an area of skin that has been burnt; very sensitive, painful and unavoidable. The nerves that receives the electronic impulses from my implant feels raw and exposed.

Tinnitus and stress management

I’ve come a long way with my tinnitus management self-study course. I’ve learned to control the level of stress in me, both psychologically and physically. Yes, the stress is there. the stressors will never go away. BUT, I can better control my own stress-reactions, and I can get rid of the worst tension, and hence tiredness, irritation and other related symptoms are lessened.

The self-study course works like this: (very boiled down)

learn First you learn to relax muscles “manually”. When you have relaxed many, many times, you learn to do it quicker and easier. It’s like learning anything else. At first it’s a little hard and awkward, but when exercising and repeating enough, the results start appearing.

The key-words are muscle awareness and relaxing, then breathing technique. Breathing while stressed is short, shallow and chest originated, whilst breathing from stomach forces and enables for longer and deeper breaths, thus tricking your body into believing you’re not stressed. When relaxed all our breathing is originated from our abdominal region, our chest does not move much.

The concept is quite ingenious: when you and your body start to remember how to get to the relaxed state, you can embed some memory techniques to invoke that memory really fast (ie. a code word while breathing out slowly). By bringing that memory to the front of your consciousness, the pre-programmed and previously learned and experienced relaxation kicks in.

Personal gain and experiences

These days I am much more conscious about my level of stress. Every time I drive my car, I notice the stress coming (traffic is full of stressors). I use the time while driving in the car for training to get my stress down.

vision2I get stressed when playing an online-game, I train for getting rid of the stress then as well.

I feel like I’m getting better, psychosomatic. Less pains, more rested, I am healing faster (I dislocated my shoulder, and a week later I am almost without pains!) Last time I dislocated my shoulder, I needed physical therapy and did months of training to get painless again. (of course the damage was much more severe back then, but a dislocated shoulder is still a major pain :-)  )

I feel like I can endure more, but I am not sure if that is due to my stress management training alone. I guess it’s part that, part CI sound improving, part more daylight, sunshine and warmer temperatures 🙂

Things are improving, I’m penetrating the dark clouds slowly and surely, the blue sky is closer than ever 🙂

Unrealistic Expectations from the World? Audism?

What do people expect from me? They expect me to participate in social activities and to be part of the “common consciousness”. That is a fair expectation in my opinion. In this blog post I want to take a look at some circumstances and  obstacles concerning these expectations. I think it will be wise to read the definition of some of the words I use, they are Prayer-no-expectationlinked, as the word “expectation” was just linked.. That way we will be on the “same page”.

In this aspect I am thinking about what we expect and when we expect it in terms of my hearing progress. This is also a sore and difficult point on my behalf, since it is much about social interaction and how I am perceived socially. How I am viewed as a person.

As I’m going the path of CI rehabilitation and re-learning to hear, I am doing some discoveries about expectations of my recovery from both myself and others near and dear.

Me, a social outsider

All my life I’ve been a part of the hearing world, and thus a social outsider. Even among my closest friends and family, I got and still get, remarks and comments that hurt to the core of my being. I’m sometimes left with a feeling that people suspect me of WANTING to be isolated or withdrawn from issues that are talked about. I often feel misunderstood and misinterpreted. For instance my withdrawal from social events is sometimes being interpreted as a lack of interest, or attempt to socialize. That is so unfair and sad. I’ll explain why…

The more people talking at the same time, the more impossible it is for me to interact in a meaningful way. Believe me when I say I really wish I was able to interact with others on their terms, but there is a huge damage in my hearing that makes that incredibly hard. There is a limit to everyone’s mental capacity and endurance. My limit is shorter than most in terms of social interaction due to the nature of listening and understanding.

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Unconditional condition

I just sat very comfortably in my favorite chair in front of my computer for two hours, doing some work that requires concentration. I had no sounds to distract me, since I turned my hearing aids off for the work-session.
I can’t stand the sound of the fans, even though I have water-cooled most of my rig, the hard-drives give off too much heat for the whole thing to be able to run without fans… I think the sound can’t be much more than 17 – 20 dB (according to fan specifications), and that’s a faint sound, really. But my hearing aids are the most powerful there is (to my knowledge) and they’re cranked to the max. (Widex Senso Diva). So I turn them off more and more these days…

The recruitment is killing me if I don’t turn them off.

The tinnitus is there as always, but not really bothering me concentration-vise. It’s sort of comforting, since the sound now has a rather steady tone. (before it was a chaos of frequencies and variations in strength/volume)
Anyway, I sit, my head is not moving, my eyes are only fixated on the screen, and my concentration goes to the task at hand. The first hour goes fine, no problems.
The second hour I start to get physical sensations in my head. It is like pressure building slowly up.
I had a good night and I’m not tired. I have no stress to complete the work I do, and have no deadlines for anything. It’s Sunday 🙂

radThen suddenly I get these auditory sensations, it’s like a silent storm. I can feel it somehow. Not like pain, it is not unpleasant, it’s just a sensation of very weak electric current in my brain. Like a blanket of electricity sliding back and forth like the radar screen image.  It’s like a soft “wooosh” inside my brain…
The sensation that I have are connected to my ears, and at the same time they affect all of my brain (at least it feels like it does). I have no control of this sensation.

I wrote about this sensation before, connected to a pre-sleep phenomenon. This is very much the same, only now I get it during daytime too…

Seconds after this “wooosh”-sensation I feel dizzy (I guess there’s some kind of activity affecting my Vestibule where the balance-nerves are situated). It’s a weak vertigo, even though I sit still, are at peace with no stress. And I know I don’t have Meniére, thank goodness…

After this my ability to concentrate is worse. It’s difficult to keep a thought for as long as I like. My mind has always been a multitasking one; while doing one thing, my mind has been working out what the next thing I should/want to do… This is impossible in the state I’m in after only two hours of working effortlessly… It’s frustrating for me, because if I’m doing something that gives me a thought that I want to pursue, the short-term memory isn’t working as I’m used to. So when I complete the task I worked on, I KNOW that there was something I thought of doing, like searching for a special kind of information, or look up a certain fact etc. etc. But it’s gone… Sometimes I sit for 10 minutes of more, pondering what it was that ignited that thought, trying to reconstruct the idea for myself… Sometimes I get it, most often I just move on… I can’t let it get to me.

In short it makes me feel like I’m cognitively amputated… The SUDOKU-thing helped me understand this better…

And by writing this now, and concentrating on the subject and all the aspects of writing, I feel I’m pushing myself… I’m starting to get a headache now… This is the part I do not understand at all…

I haven’t heard a sound all morning (it’s now 12.30, I started working at 9.30). I know my hearing is disappearing, and the tinnitus is singing it’s tune. But why is it a strain for me to do something that doesn’t affect my hearing? Why do I get this dizzy feel, why the headache, why the memory-problems, why the multitasking problem, why the feeling of fatigue? Can it be that the optical-nerve also lies close the the nerves of the auditory nerve and the balance-nerve? It is all connected somehow…

My jaws feel like they had a punch (they’re sore, like I chewed gum for a few hours). My temples hurt a little bit. The dizzy feeling is there (but I’m not having trouble with the balance, though).

This state/condition will last all day, until late at night, then I feel better again, but the paradox then is that I need to sleep. I might me tired, but want to stay up because the world feel somewhat more vivid to me. Is it connected to me originally being a B-person? I’m not extreme, have no troubles getting up in the morning whenever… (but used to)

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!

 

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