Home at last ....

Sunday 8^th December.

Finally home, and with time to sit and breathe! It’s been a hectic couple of days since I last wrote! My tune up with Arlene went well. We redid all the electrodes and moved them up. I still find it hard to pick a “comfortably loud” level and suspect I am perhaps being over cautious, but I’d rather do that than set them too high and suffer and not want to wear the CI.

When it was switched on, we then chatted for a bit and she would turn them all up a few times. She played warbles from a machine and based on which ones sounded loud, and how loud turned them up a few more times. Based on descriptions of sound she adjusted some of the lower ones up more, and some of the high ones down a bit. We talked about “S” and “P” and she said they usually just use the “S” program now and not the “P”. They won’t put a loop on yet so I have just two programs – one is normal and the other is the same with Optima on to try and see if it sounds the same or not and how the battery life alters. I've not put that one on yet though I need to get round to trying it.

She gave me (I think) 20% on volume so I have some room to play, and in any case I am back a week tomorrow for the last map before Christmas, so it’s quite good spacing I think. I’d hate to wait a full month at the moment.

By the time I left the office, I was hearing some background sounds – like the fan which I hadn’t heard before. Her voice was clearly a voice with speech shapes but robotic and not normal, but far better than when I arrived I think.

I spent the rest of Friday travelling – taxi / train / train / bus / plane and finally landed in Kirkwall to snow and Ice at 8pm!!

I didn't really make much sense of stuff that day – far too much background noise and nothing familiar. I could hear the train as well as the people talking behind me. I heard the announcements on the train quite clearly, and also announcements in the airport – by clearly I mean I could the speech but not understand it.

Oh I forgot – before I left the centre I had to do the computer tests again. I  got 91% in the speech and lipreading – but most of that was lipreading!! I got 31% in the speech only (no lipreading) it was mostly the first and last bits and random words – but that was almost as good as I got before the CI – though as ever it’s not reflected in the real world!!

I did some extra tests I had never done before – environmental sounds (I thought classical music was a car engine- oops!), some with vowels in the middle on a touch screen, and some forced choice with different syllables. The vowels were pretty rubbish – so many of them sound the same. The syllables were easy – the environmental sounds quite mixed.

I arrived home at 10.30 a.m after a 3 hr boat ride – yuck. I was tired but had an hour before we had to be at the school for the Xmas fayre! It was a whirlwind of everyone wanting to see the implant, and talk to me – I’m so glad that people are sounding robotic but speech like as I could chat to them all as well as I could before the op I think. No chance of comprehension with them without lipreading in an open set fashion of course, but I am doing well with months of the year with Stephen – and with Ned - I even realised when he tried to trick me by saying "bum" instead! J

The xmas fayre was fine – noisy, confusing, tiring, but with lipreading I did OK. I got home at 4.30 to find an invite to an Xmas party that night! I was tired, but decided to go anyway as I knew Stephen wanted to go, so I figured we would do an hour or two and then head home. We got there at 8pm and left at 2am! The CI is great for making people aware, and more careful about their communication. I'm also less bothered to admit I didn't follow and get people to repeat, and I ended up having quite long conversations with a couple of people I've not spoken to before much, simply because they were more aware and I was less self-conscious!

One thing I did learn, which surprised me – apparently before the op I was very quietly spoken!! And now I am much louder – I kept both being too loud (and being told to stop shouting!) or too quiet and no-one can hear me!! That will I hope resolve itself, but I must keep asking people to let me know if I am too quiet or loud so I can get it right. I do not want to be someone that shouts all the time and is embarrassing!!

Plan for today is to squeeze a bit of listening practice in with a few of the kids, and Kate has already offered to do ½ hr a day with me in the office which will be fantastic! However I am currently in silence - bar the ever present Christmas tinnitus of course as I've managed to let all three batteries go flat at once (!) In my defence I was out all day yesterday, not getting home till 2a.m -but I need to get a bit more sorted at getting a routine in place. Here's hoping they charge nice and quickly!!

Storms and practice ...

Thursday 5^th December.

What a morning!! Pause for a second while I marvel at how tuneful the keyboard is whilst I am typing. The keys don’t all sound the same, they make slightly different pitches!!

So I got up at 7am again to head back to Kilmarnock to stay for the rest of today and tomorrow morning before the flight home Friday afternoon.

First indication of problems were the torrential rain and the bits of buildings (signs, loose bits) lying in the roads!! Got to the station and lots of trains were cancelled. The sign said there were gusts of up to 95 mph so many trains are cancelled. Kilmarnock at 8.12 was one of the few still running. So we wait, and the platform is announced. Go through and stand waiting as the train pulls in. The people on it start streaming out, and then all of a sudden the other people waiting to get on the train start leaving as well!! I hate it when that happens as I have no idea why! I follow everyone else and catch a train staff member – it turns out the station is being evacuated as the wind has broken some of the glass panes in the roof all over the station!

So we are herded out and I managed to snag a spot in the doorway instead of the rain. They think 15 minutes delay so I wait. Then a man says something else and a few people leave so I go to find out. They are advising people to find alternative methods of travel – arrgggh!

Anyway, to cut a long story short, I headed to the bus station, only to find the buses were suspended! I ended up in a taxi - £50!! I arrived at 12pm – appointment was 9.30! Went straight to CI clinic to explain why I wasn't there and Arlene saw me anyway – how fab is that!

We just chatted today. She didn't want to change the electrodes today as it would be done again tomorrow, and it was done yesterday which is more than they normally do! I told her a bit about how things had been and she was more than happy. She gave me some more rehab material as Susan had asked her to give it me – it’s more kid friendly and fun so that the kids will enjoy doing the rehab with me which is good. I’ve not looked through it yet, but will do when I have finished this.

I asked about whether it was worth trying the “p” program as well, as I know some people much prefer one over the other and she will speak to Jo and maybe give me that to try tomorrow. 

I’ve just checked on the angel sounds and I can now hear ALL the tone notes, I can also hear all 16 pitches in the CI calibrator!!

I did some of the speech discrimination thumb prints at Level 3 (Same syllable number different consonant / vowel number) and got 100% at warm up, 29/30 on level 3.02. Level 3.03 had no sound so I skipped it(!) and then got 100% at level 3.04 (advanced) and 27/30 right at level 3.04 (expert) so I am more than happy with that!

I discovered that I can hear it fine without the headphones, just into the room – and at volume of 50% - that is mindboggling. With 2 hearing aids my computer is quiet at 100% volume – I could not do any of the listening exercises with hearing aids without headphones / t-link hookup!!!

I guess its true when they say you don't need as much volume with a CI!!

Anyway, it’s now 3pm and I am going to switch off and have a nap for a little bit. I am hear on my own so I will do more listening practice later, but I think I need to rest for a bit first as I am tired after all the morning’s trauma’s!!

So 10pm.  When I had a nap I decided to put the ipod on on speaker next to me so I could listen while I napped – figuring the brain will make sense anyway. I turned it down a bit and was surprised to find that I recognised songs, and not only that, I seemed to be hearing the music quietly like it used to sound underneath the louder sometimes robotic, sometimes normalish, sometimes warbly singing or certain instruments. I thought perhaps it was my brain infilling and thinking it rather than actually hearing, but after taking off the implant and it stopped a couple of times I figure it is my brain. It’s weird cos it’s quite quiet, and sort of just there.  I am so freaking impressed at what my brain can do  I tell you!!

I listened to music for a while; some songs don’t work – beautiful south and Gloria Estefan – nope. But then I switched off and napped properly for an hour – don’t want to overdo it!!

Woke up and had a cuppa and watched an episode of CSI and a bit of the news – but the telly was quite hard to hear voices with. Went and did a chapter of my audio book – much better, could even lose my place and find it again a few times – though I couldn't understand anything without reading it was easier than when I did it on Tuesday.

Did some more listening to music whilst reading, watched some more CSI – getting better all the time. Discovered I can hear the kettle switch off from the corridor – how amazing is that?? With two hearing aids I stood holding the kettle to feel it click off and now I can hear the click from the corridor?!!

Did some more Thumbprints – this was same initial consonant different vowel and that was much  harder .I  got around 50% right on the two warm up levels.  I also discovered that “OOOOOOO” was much quieter in volume than the other sounds. Most often got “AY” right but the rest were all mixed up.

Went back to Angel sounds for vowel detection. Got around 68% on levels 2 and 3 step 1 and I need 80%to move on – this is a really tricky bit for me right now.

Went back to the CI calibrator to check a theory and sure enough, am now detecting only 15 sounds, and some of them are way quieter than others – which suggested some of the electrodes need boosting. Good job I have a remap tomorrow!

I suspect I might end up frustrated over the next two weeks when I go home and have to wait for tune up’s the speed my brain is working! Hopefully they will give me some higher volume on subsequent programs so I can boost it in between appointments.

Delayed Rockstar....

Wednesday 4th December.

I headed back to Kilmarnock for a session with Susan. I explained how the rest of Tuesday had gone, and showed her the notebook I had jotted down sounds, listening practice etc. We hooked up and did a new map (I assume as we reset all the electrode levels!) And guess what? This time I could hear everyone of those electrodes!! As an actual sound – beeping over and over! We pushed them all up a fair bit, and I felt more confident at saying when it was a good level. I still erred on the side of caution, cautious that whole day of that sound level might be overwhelming. Then she switched it on – what a difference! There is still warbling with high sounds, but more of a robotic underlying – speech sounds more speech shaped, but not that clear and definitely robotic! We tested the volume level by her banging on the table and then slapping – both were loud but not wince in pain loud which Susan was happy with J

Then we did a little bit of rehab. We started with her saying one of three words, with diff syllables in – all right. We then tried one of 4 sentences – all right J we then did a sentence with a choice of two words – e.g fed / food. All similar sounding and I got pretty much all of those right – go me!! Then finally we tried some open set questions such as what is your name? Do you watch television? I had nothing to look at and no idea what they would be. I got some of them partly right and one completely right. It was a lot harder, but the fact that I even got parts of them right on day 2 (especially considering day 1!) was amazing! Perhaps I am having a delayed rock star moment!!

I asked about having a t program put on for headphones but they don’t really want me to use headphones yet – not entirely sure why blocking out environmental sounds for practice periods is bad but still! I am also still only on the “S” strategy. She gave me 20% more volume on the volume control in case I needed it. 

I headed back to Glasgow to meet Stephen and we spent the afternoon doing a bit of shopping and having some food. When there is any other noise I lose his voice – it’s not robotic – it’s not there! I think it’s because its familiar so the brain is focusing mainly on the new and unfamiliar to figure out what it is, which is why I hear so much warbling – that’s high sounds.

I didn't get to do any specific auditory practice that day, but we did go buy me a Kindle Fire HDX as a Christmas Pressie (which I am totally having early!) so I can use the immersion reading option. If you have both the kindle and the audible book it will play them both together and then highlight the words on the screen whilst reading – which will stop me getting lost and having to repeat the same bits over and over again!

We had a works award dinner that night. It is my worst nightmare with two hearing aids, never mind just one baby CI warbling ear! I stayed close to Stephen and our friend Clive who was also there. I managed to have a conversation with someone next to me reasonably OK (but my lipreading is super fantastic at the moment so that helped – but he did sound robotic and so I was getting some speech help from the CI – but overlaid with warbles from all the background noise).

By 10pm I was shattered so I left early and had an hour reading with no CI before sleep.

Switch on ....

Tuesday 3^rd December.

Well. It was not rock star – that’s for sure!! I had James from AB there as well as it was the first Naida they had programmed. I had the expected hearing test – and forgot to ask for my audiogram – will do tomorrow. Then we went through. They explained what would happen – which I already knew, and then we started. OH.MY.GOD. It was nothing like I expected. I thought it would be a bit like with a hearing test. You sit there, waiting, straining, and then you think maybe you heard something, so you tentatively press, and then you hear something louder and so on.

No. I didn't hear anything. I FELT some things. When quiet it was a tickle, when louder it was a double pulse that felt a bit odd and made me flinch, but not once did I hear a sound. I was very concerned thinking that I would be feeling all these weird pulsing’s all the time. But James said no, it wouldn't be like that.

When it was switched on I heard nothing!! They got some rattles and things and I could hear some very loud but nothing clear – more like a pulse. Nothing with speech. So then they turned it up and then I get sound!! I had said I was concerned about setting the levels too loud, as I know I am a volume junkie on my hearing aids, so they set them cautiously – probably not helped by me not being able to really hear anything!!

So then I got warbling!! When anyone spoke it sounded like someone was going up and down the keys of the piano! I never knew there was so much up and down in speech! It sounded nothing like speech, not robotic or Mickey Mouse, just warbling tones! I didn't hear any steady state background noise likes fans and things, but I could hear doors shut, the lock turn on the keypad, and OMG automatic doors – what a racket!!

I had a coffee (which is where we encountered the automatic doors!!) and then they went through the equipment with me. Bit miffed there was no funky backpack for me L

And that was it – however I have an appointment for 10am tomorrow, 9.30 on Thursday and then the planned remap at 9.30 on Friday. I had asked for listening therapy appointments as I was down for the week and I am glad that they have given them to me – given the weird sounds I have so far!!

So we left the clinic, grabbed our stuff and headed to the train to Glasgow. I could hear people speaking, the train brakes squealing, the tannoy on the train as warbling. Walking through Glasgow I would get bus brakes squealing, but no traffic or other noise.

We did a bit of shopping then back to the hotel and I sat and tried some sound practice. I did Angel sounds assessment and got 70% on the tone identification – some of the sounds I could hear no difference, some of them I could not hear at all. The rest of it (vowel and consonant identification) was a dead loss.

I tried the CI calibrator from Mike Marz and found I could not hear the first 9 electrodes at all. I think my low sounds need boosting.

I listened to my audio book – read by a woman, and I managed the first chapter by keeping pace with the pauses, but it was hard. I then did some speech tracking from AB. And the first one was read by a bloke and I realised that I could actually hear a bit of a robotic voice. It wasn't clear but it was definitely a voice as opposed to a warble! The next two were women and harder. I then tried a different audio book read by a bloke – and it was a voice again!

We went out to dinner, and on the way back I realised that Stephen had switched to a robotic voice!! It was definitely robotic, but it was speech and sounding much more normal. Cue much hassling to say months / days / numbers to try and decipher – with mixed success!!

The pub was noisy, but I could pick up music rhythm. Right now I can hear the keys typing, and they sound different. And Jesus – suitcases being wheeled down the street are REALLY noisy!!

Anyway, going to watch a DVD now and see how that sounds, but I am so pleased it is starting to change – shows my brain is working hard – even if it doesn't seem like it at times!