Back to Japan

Flying back home this morning. I had a tune up on Wednesday but they can't do much more with the electronics now. The upside from here is hard rehab getting the brain to understand new sounds. There are 43 speech sounds and 28 ways to make them. This is now the focus.


Feelings
I am returning with less than hoped for but in better shape for sure. Back to Ulrica and the girls, the dog and Tokyo friends for big hugs (and a few beers).

Tinnitus

From a small hum to the bells and whistles of a full blown football match. The CI, for me, amplifies this not reduces the tinnitus. This is another set back. Maybe because I have only partial electrodes implanted. There seems no escape and its sometimes literally maddening.

Today things went off the charts.

Yoga, meditation may be the answer.

My speech and mapping therapists keep warning me about the depression I am facing once the adrenaline fades.
I think I am different, but they say they have seen this before. It's not very helpful advice for me.

I was walking down a cobbled street, and thinking this sucked for my balance. In the opposite direction a kid was being pushed on the cobbles, in his wheelchair, clear thinking the cobbles sucked too. On the Global scale of crappy things, I cant complain.

Speech Therapy

Mental Mapping of Sounds.
The brain knows what a tap running, a bus, or the phone ringing sounds like. Now it is getting beeps and hums instead. My rehab is to focus on the stimuli so the brain starts mapping these together. I have a check list of around 100 everyday sounds. First check I can "hear" something, next check if / when I recognise it (seeing a dog bark is different to a dog barking behind you, and knowing its a dog).

Lip Reading or Speech Reading.
A CI can not hear certain sounds. Lip reading can not differentiate certain lip movements. They work well together.

Lip reading focusses on three properties of sound:-
1. Manner - how it is made. e.g.
-Explosive "p,b,t,d,k,g",
-Friction "s,z,f,v,sh" or
-Nasal "m,n,ing"
2. Place of Production. e.g. lips together "p,b,m,w", or tongue and teeth e.g. "th".
3. Voiced or Not. e.g "b vs p"

CI Hearing Class.
Learning to hear with the CI - no lip reading clues.
First identify which sound groups you have difficulties and work on these. For me examples of sound groups are "pea vs key, pick vs tick, tear vs care; pill vs bill ; tart vs dart, ought vs sought, sue vs zoo; day vs nay"

Lip Reading Class
Easiest to lip read
P,B,M; W,Wh; F,V; Sh, Ch; Th; L
Hardest to lip read
K,G; S,Z; T,D,N; R.

Therapist reads out lines from a story. I repeat back. We have just finished "The Emperor's New Clothes".


Pretty humbling but there is only upside.

Second Tune Up

5 electrodes now working on the left but still on low power settings. Facial nerve twitching with any more electrodes or higher power setting. The right side is unchanged with 4 out of 12 electrodes working. Not much hope to improve from here. Future tune ups will be tweaks. The doc doesn't see a surgical or technology route, to stop the twitching. It is because of viral damage to the cochlear bones and / or the auditory nerve cells.

Still I am out of the "Land of Silent".
My brain should unravel more electronic sounds over the coming months and with better lip reading, one to one communication will be much easier.

Hoping to get back to my family for the end of next week and start life again. A little different but still very good.

Switch On + 2 days

Similar to post surgery, the 48 hours post "switch on" were pretty glum.

Now back on track and recognise that every week is still better than the last. That can't be so bad.

The ear I have "working" will never perform well but its already given me some connectivity. I can hear some sounds especially tapping or knocking e.g. knocking on the door of the house, the level of my voice, footsteps - all breakthroughs.

Also balance is getting better. Had another successful, solo trip round town.

Have got a technician from the implant manufacturer Med El taking a look at my case on Tuesday evening. Maybe he can find a program setting to get the "good" ear working.

Over the next two weeks I have 9 hours speech therapy, 6 hours software mapping and 4 hours balance therapy. Plus homework. Its starting again from scratch and each step fwds is a big motivation.

Gloom over. Life will still be a lot of fun.

Switch On Day

Very nervous. I am part of a Cochlear Implant group. Whenever a member switches on, they post results. It is such a range, from just bleeps to recognising words. But the theme is stick with it and it gets better.
The group site is the best source of info and support I have found yet.
ciug2004@yahoogroups.com

I can imagine it's very different mentally, depending where you are coming from. E.g. partially deaf give up any residual hearing and use of hearing aids, to risk that CI will be better. There is no going back.
I was hearing just 2 months ago but now have zero. Anything is better for me, but also may be too hopeful.

I have been sent this You Tube link a few times and is a heartwarming switch on. The girl had been deaf since birth. It's not a CI but similar, using ear drum vibrations. Just shows medical technology working nicely.

http://www.youtube.com/watch?v=vjU9U81O1n8&feature=youtube_gdata_player


Switch on results.
Each electrode was individually set to "loud but bearable". Then they turn on.
Unfortunately the left ear, with 12 electrodes, is barely working. Any higher settings makes my face nerves twitch. The right ear, with four electrodes, is working much better but with clearly limited capacity. So right now I can hear metallic vibrations but 99% from the right ear.
Therapist said "it is not a brilliant start" but she would take advice on how to work more with the left ear's settings. Next software mapping session is Monday.

Until then practice.
Focus on hearing familiar sounds eg light switch, tap, car etc.
Also buy two new papers and follow friends reading paragraphs aloud.
Human sound better to train with than TV etc as more 3D.