KOKESHI.....good luck for tomorrow

[Elibean]

Didn't want to hijack other thread, but do want to wish you the best with tomorrow's switch-on! I used to work with Deaf people, but don't know much about implants. I do know how isolating and traumatic sudden, or even not sudden, deafness can be, an awful lot for you to deal with in a relatively short space of time, by the sound of it. But then I also know you are one brave and resourceful lady.

Wishing you the best possible success from your CI, and an end to isolation asap xxx

Aw thanks oenophile. I just googled your name...I didn't know what it meant! Greek translation is "wine friend". I was definitely good mates with wine, but it didn't like me too much . Night night.

Hi Kokeshi!

Sorry, life and work got in the way - meant to come back and post.

I'm so enjoying your updates and can relate to lots!

I was at work the other day and needing the IT support lab, but they had moved. I was able to ask for directions, go there, ask for the person I'd been emailing, understand that they'd popped out for a minute, discuss the software issue etc etc etc.... all sorts of conversations with strangers which would have been immensely laborious before.

My great-aunts always talked to people on the bus and came home with amazing stories of people's lives - I feel the same temptation because I'm so enjoying being a listener, rather than trying to keep all conversation with strangers short and tightly controlled.

Haven't had much chance to listen to "my" music so I've been listening to the dds' stuff - yesterday was The Wizard of Oz. I know some of the songs but not all - and I can still only hear the ones I know, but am getting some detail that I'd forgotten which is fun.

Am happy to report that the Wogan effect is fading - an Irish Judy Garland would have been toooooo weird - but she's definitely American. Not sure whether she sounds southern, but not sure in any case how authentic her Kansas accent would have been.

I'm getting confused with some Kiwi accents, eg I misheard "farmer" as "fireman" and was confused (Why did the fireman have a bull??) which is interesting as that sort of confusion didn't happen with lipreading. In fact, I now realise that I've been unconsciously projecting English accents onto people and it's startling to be surrounded by NZ accents! Mad, I know.

Cristina, I'm finding communication so much less tiring already - I'm sure your DS must be getting the benefit too. Well done to him for being able to "scan" conversations; I can't do this yet but I hope it'll come. I'm either watching the conversation and giving it my full attention, or not watching and totally unaware of what's being said. Hard work.

I'm very late tonight and I know I'll pay for it tomorrow, but I kinda look forward to doing this now!

Welliemum, thanks for telling me about your experiences too, it's great to have someone else to compare notes with. LOL at Irish Judy Garland...now you know I'm going to have to rent it just to see if she has been chipmunked!

I totally relate to your wanting to have conversations with strangers! I've been beaming at everyone in the hope they strike up a conversation with me. How different to last week when I would look away or turn my back to avoid it. It's like waking up from a bad dream.

I was in the studio today with DP and we're continuing to work well together. There seems to be a huge pressure lifted from both of us, we've laughed so much more and have been really affectionate with one another. I guess it's been hard for DP too. Someone said to me that the deafened person loses their hearing but a partner also loses their voice. I felt guilty because I just couldn't sit and listen if anything was wrong, it took so much effort just to communicate and it seemed to be all one sided.

I had my first battery change today - I guess I've done well out of the 3 batteries I've had in since last Thursday. I heard the beeping, took it off and looked at the error code and thought it was broken. I also realised I hadn't taken any batteries with me. Rooting in the depths of my bag I found 3 (would you believe it) unused hearing aid batteries, which are the same ones I use for the implant. Lucky...need to be more organised I think!

Today I was told to keep switching between the two programmes, to see which one my brain prefers. I thought P2 was the best but now I'm not so sure. There's quite a difference (it's actually to do with the rate of info) but I'm scared if I go for the "simpler" one then I'll be doing myself out the more complex stuff (with regard to music). I wish I knew all the proper terms, I'm trying to fish about in my memory for ways to describe how it sounds and I really can't!

I had a fantastic evening, I met with a lot of friends whom I haven't seen for quite a while. It was really emotional, everyone was so lovely and welcoming. I felt fantastic afterwards and realised that even though I'd not been there in person, I was never far from their thoughts. I enjoyed just sitting listening to what everyone was sharing, like I'd never heard anything like it before. I think during these times you really find out who you're friends are and I count myself lucky that I've a few really special pals. I hope that doesn't sound to cheesy, it's hard to convey on here.

Tomorrow I'm going back to the implant centre for another mapping session. Probably a mammoth post tomorrow! How are you getting on with all your programmes welliemum?

Ta for reading.

Hi Kokeshi, glad to hear you're doing so well...Keep the daily blog going!

Thanks ScottishThistle, I'm really glad I'm doing this because so much is happening in a day and Id never be able to remember otherwise. I dozed off at 10pm and woke up only half and hour ago, it's been eventful.

As I said yesterday I was back down at the Implant Centre today for another mapping session. I was a bit stressed about having to make a decision about which programme I preferred because after watching Notting Hill with my TV cable last night, I was convinced that P1 was better for music and voices. Well Hugh Grant sounded like Hugh Grant as opposed to a chipmunk on helium.

Earlier today I was frantically changing between the two every 5 minutes and throroughly confusing myself!

Anyway, DP and I got there for my appointment at 1.30 and after asking how I'd been getting on, K - the scientist - said that he'd let me have a few more weeks with each programme to really get a feel for them. The mapping session itself is fairly uneventful....just sitting in a room listening to beeps. They've fine tuned each of the two programmes and a lot of the background noise has cleared up. They also turned the maximum volume up so people's voices are a bit clearer when they're further away.

The next stage was in with the audiologist to repeat some of the exercises that I'd had to do at my assessment in February. It's a battery of lipreading and listening tests (and psych evaluation) and this time was to gauge how much my scores had improved with the implant. I had to lip-read this expressionless man on the screen who was just uttering random sentences (with sound). I got none right on my first assessment in Feb. This time I got 100%. I know it's just a daft wee test but I was elated, I felt like such a failure the last time round! The second test was listening to the same man without any visuals...I think I got about 82% for that. There were others that were permutations of this but even though I didn't have perfect scores (I have to remind myself I can still only hear on one side!) it's still truly amazing.

The chief scientist (whom I couldn't lip-read at all before) came into the room after she'd heard about my progress and asked me if I'd like to take part in a film they're making about implant experiences. They even have their own photography department down there (hmm...wonder if I could get any work out of that ) for shooting it.

The other thing (they're coming thick and fast) was a chance to take part in a project with a man who is a lecturer and musician at the RSAMD in Glasgow (Royal Scottish Academy of Music and Drama). He wants to compose some music and have a concert next year specifically for Cochlear Implant users. He's looking for a group of about 4 implantees he can consult with as he composes this music over the next few months. On the back of this I happened to mention that I went to the Pipe Band Championships last Saturday, and I was told there was in fact a man in Edinburgh looking for implant users to take past in a drumming group as well!

I think I have a more interesting life since I lost my hearing than I ever had when I could hear! I also managed to drop you into the conversation welliemum (you being a musician), but it was tricky trying to explain my relationship with you! I kept it very general! I noticed on another thread you said you were annoyed by people telling you what you wouldn't be able to do, was that concerning your hearing?

Exciting things happening, and I have to keep this wee diary going so that I have something interesting to say on camera. Oh god, what am I thinking? I hate being looked at! That's why I pursued a career on the other side of the camera. Well, I don't expect it will red carpet and ball gown experience .

kokeshi, I'm soooo impressed with this brilliant progress - so exciting!

Haven't time to write properly now but it all sounds great. Not luck of course - I'm a strong believer in "you make your own luck" where these things are concerned.

More later!

Love reading your blog Kokeshi, what an exciting time for you...Sounds like we'll be seeing you on screen anytime soon!

Good morning.

I'm going to have to try and make this concise...I can't believe that's the time already.

I'm actually quite tired so I'll explained the main event of the day - my first meal out with friends since I got the implant switched on. There's a fantastic place we go to (Delhi Darbar in Bishopbriggs if anyone's local!) - which I realised just before we were about to leave - is always heaving with people. I started to panic a bit because I thought my friends would expect me to be able to magically hear everything, and I would be letting them down (daft I know).

We arrived at 8.30pm and had to wait in a queue even though we'd booked in advance. I took the opportunity to explain that this was still really early days yet and when it's so busy it feels like I have the whole restaurant inside my head! Just one of the limitations of having an implant over natural hearing, I don't have the ability to filter out extraneous sound and everything just becomes indistinguishable, including speech.

One of my friends is actually deaf in one ear and as we stood waiting for our table she seemed to get a lot out of talking to me about how it affects her. I think hearing loss is something that affects a lot of people but is never openly discussed. Whether that's to do with embarrassment or downplaying it, I'm not sure.

There were seven of us and I think I managed to get about 30% of what was said on the first go, which wasn't bad with all the other noise that was going on. The best part was getting the jokes and banter, it's just something that I'd missed out on so much when I couldn't hear. I felt really excluded, even though everyone would do their best to help me, more often than not I'd just want to go home.

The meal was fantastic, we'd been a few months ago to the same place but I was tense all the way through. Before I just wanted to get it over with and leave but I really enjoyed sitting there with everyone, even though I didn't get everything. As I've said already I feel like I've been given back my life. I never realised just how much our hearing is involved in everything we do.

I heard my first joke tonight...probably not in the best taste but it's a milestone for me so here goes:

World War II and an Englishman and Irishman and a Scotsman were being chased through fields by German soldiers. They ran into a barn and jumped into some empty grain sacks followed closely by their pursuers. One soldier pokes the first sack (containing the Scotsman) with his gun and hears "woof woof". "Ok, dog in there" he thinks. He pokes the next sack, containing the Englishman and hears "miaoooow". "Cat in that one, I'll try the next one". He gives the sack with the Irishman inside a good prod with his gun...

...and hears "potatoes".

Hahahaha. Ok, it's shite I know but you have no idea how good that sounds after 10 gag free months!

And with that, I'm off to bed!

kokeshi, i'm so pleased to read this, what an amazing journey .

Thanks hoxtonchick, very kind of you to respond. Still can't believe it when I switch it on and there's noise! I think it will be a novelty for some time yet.

I'm going to the screening of a film I made tonight (when I couldn't hear) so it will be like meeting everyone for the first time.

how exciting, have a great time.

Update from last night as I was absolutely exhausted when I came. I don't think I planned it very well. Any venue in Glasgow on a Saturday is earsplitting!

I met a fairly new friend at the Millenium Hotel George Square and it was the first time I'd actually heard her. She's hard of hearing herself but I've only just realised now that I can hear that she has problems controlling the volume of her own voice. She was very quiet and we were sitting under a speaker, so all I heard was a loud crackle most of the time. I asked the waitress to turn it down - which she did - but I think it's just one of the limitations the implant. Natural hearing is amazing in that it let's us filter out unwanted noise and concentrate on particular things. To me it just feels like the whole venue is about an inch from my ear. I was relying a lot on lip-reading, I guess I didn't really prepare for that too well. Also very tiring.

I was a wee bit deflated afterwards because I just realised that the screening we were headed to was going to be the same kind of busy environment. It's also quite difficult with other's expectations of what I'll be able to hear now. Thankfully, we only had about 30 minutes or so before the screening - and the film itself was fantastic. The editing was really clever, we were going for a sort of experimental feel and they really captured it well. I could just about make out the sound track as it was quite a simple piece of music and there wasn't too much dialogue.

I managed to speak to the actors - all teenage asylum seekers - who were really chuffed that I could hear them now (just, above the din!). It was quite challenging giving them direction on the shoot because I could only see what they were doing visually. There were more than a few wires crossed but they were very professional, considering how young they are.

We moved onto a pub later with my co-worker, his DP, his niece and my DP, and again it was more of the same with an added challenge- trying to listen above hundreds of drunk Glaswegians. I pretty much completely relying on lip-reading at this point and by the time we left (midnight) I was exhausted. I'm looking forward to the "Beam" programme the implant centre will be giving me soon. It's basically for this sort of situation. The dual-microphone system allows you to focus on sounds directly in front of you, while softening surrounding sounds ? like shining a beam of light on what you want to hear. Cool.

I probably wouldn't have gone at all last night, especially not to the pub afterwards before I'd have the implant switched on so I know it's made such a difference confidence wise already.

Apologies if this doesn't read well, I've just hammered this out quickly. I'm having my day out with L today, so that should be slightly less challenging!

I'm sure this will tail off soon, as I'm sure it's beginning to become a bit repetitive!

I did have a bit of a rest today from intensive listening as I had most of the alone with the wee one. Our day is always spent outside - weather permitting - down by one of the lochs near us. We're really lucky in that respect, he enjoys loads of simple things and it seemed that he was being a lot more responsive to me today, probably because I was responding appropriately to what he was saying. I noticed that I've been a lot more relaxed when I'm out with him, I was always really anxious in crowds or if I couldn't see him for a second (he runs like the wind). I think it's had an affect on him as well, maybe he senses that I'm not trying to restrict him as much.

We spent ages just throwing stones into the water, examining sticks, drawing in the sand and talking about what we saw around us. I was thinking today I may be able to take him further afield in the camper van on my own, now that he can tell me what he needs. It was always a worry if I took him to far that he'd be not well, tired, or hungry and I wouldn't have been able to understand him.

I have a DVD of our film and I showed it to my mum today, I think she was a bit confused - she likes stories with a beginning, a middle and an end. Bless her. I'm also not sure whether the soundrack sounds a bit weird because of my implant, or the fact that it was composed by a 15 year old .

I'm going to have to make a decision about taking my motorbike test soon. It's something I really wanted to do to prove to myself that I still could, and because my CBT runs out at the end of June. But, I saw a thread earlier about someone's cousin being killed after being knocked off his bike, and today I also found an old photo album of when I almost lost my leg 7 years ago in Asia (after being hit by a 4X4 while I was on said mode of transport).

I shall think seriously about it. I know what the sensible answer is, but I think it might annoy me in the future if I don't at least try. There's been a lot that I've not been able to do recently and this would be something just for myself.

Yeah, I know .

wait, you're envious? Or is that nauseous? Oh god, look at the time!I'm off to bed, I hope you've had a lovely day Califrau

I've not been around for a while and am still catching up with this thread, but just wanted to say hello

This makes for wonderful reading. Please keep it up.

Been humungously busy and also away, K, but thinking of you and wondering how the sounds were going

You made me cry, with your post about your day with wee one...I bet you anything you like he senses something good is afoot, whatever age he is.

xx

Thanks guys, it's really encouraging. I'm never this open in real life and I feel a bit exposed tbh. I was wondering today if it wasn't such a good idea to bare all on a website potentially read by hundreds of thousands of people. I just saw that thread where one member started a thread slating someone in PizzaExpress and she was another MNer!

I'm probably quite easy to identify

But, I'll plod on and if anyone does know me, please say hello.

I've had a bit of a day off from everything today...I didn't even leave the house! I've been exhausted (if you check out the time of my posts, it will reveal why!) and it's been a good day to catch up on emails and reflect on things. I've also spent a stupid amount of time on Mumsnet, quite worrying how absorbing it is. How do people find the time to do anything else when they're posting during the day?

It's strange just how quickly I've become accustomed to hearing again. The best part I think it waking up from a totally undisturbed sleep (no more DP farting in bed!), then sticking on the implant and being "switched on" again. It's the first thing I do in the morning without even thinking about it. Even the stupid noises like the floorboards creaking and the toilet flushing are welcomed, reminders of how fortunate I am to be in this position now.

I've been doing a bit of research too, looking at journal articles on optimum stimulation rates of the implant for speech recognition. Being a former science bod, I like to know what's going on, but my undergrad physics leaves me a bit unqualified! It really is amazing what they can do nowadays. I'm in awe of those guys who sit in their lab coats and work out all of this stuff .

My comprehension of speech and music from the TV also seems to be improving. I watched a repeat of Thursday's episode of Bones tonight and I could really distinguish the different tones and emphases the actors were putting on their words, compared to Thursday anyway. There was also some guitar riffs from ZZ Top's Billy Gibbons, much more distinguishable, although I'm not a fan per se!

I've had an email from a woman who shares a dentist with me, she's going through a similar thing - idiopathic progressive sensori neural hearing loss with quite a bleak prognosis. It's good for me to be reminded of the position I was in not so long ago, and also feel able to help her, well at least tell her how I've managed to get through it. It's difficultt to imagine how you're life can improve when you've been given this diagnosis, but I hope that I can at least be there for her to offer some hope. She has young children and was telling me that not being able hear them was heartbreaking. I've told her about all the things I found helpful and the charity - LINK for deafened adults - who have supported me through the worst of it. It's just nice to be able to feel that I can give something back too.

She even shares an otolaryngologist with me and has similarly found their approach less than sympathetic. I think for me the worst part of losing my hearing was the emotional impact and lack of follow-through from the NHS services. Once the ENT dept realise they can't cut you open and fix you, you're kind of left on your own. Hopefully, this situation will improve with the the profile of charities like LINK being in the public eye. I'll definitely do my best to get that done because the really saved my sanity in the darkest times.

On a lighter note, I'm trying to figure out where to get a cheap hire car/mpv in Sardinia, we're off on holiday on the 13th and I'm really looking forward to that. We've decided to fly RyanAir (god, what am I thinking) and are staying at our friend's villa, so we'll have a bit of spare cash for extras. I'll probably be driving, which is something I would have be a bit hesitant of before the switch on. Not being able to hear sirens and other warnings had made me a bit nervous of driving with others in the car. Not a problem now - well except for the driving skills of the Italian drivers

Oggsfrog, great to see you! Sherlock thanks for the input, how is your DH? And Elibean, thanks for thinking of me too. Your story is very inspirational.

Hi kokeshi - I'm so frustrated I want to SCREAM - just been trying to get dd1 to go and have her nap so I can post on your thread - she won't - and now dd2 is about to wake up - grrrrrrrrr.

One day I'll get them both asleep together!

Am so enjoying your posts and really want to post too!

OK must run, but will try and write tonight if I don't fall asleep first....

Hey welliemum! Please post if you can manage, I love reading about your experience too. x

Hi Kokeshi - it's lovely to read about your life getting back to normal, you've had such a difficult half year. I hadn't heard of LINK before your postings, but it sounds like they do some very good work.

I read heaps about stimulation, frequencies etc a few years back, also wanting to know exactly what I was planning to put into DS's head and how it would work. I almost understood it then, almost, but haven't kept it up and when the time came for the CI we just went with what the hospital was offerring and to my great surprise I just let the audiologist do her stuff and don't interfere or ask too many questions. I don't know if I'm exhausted after all this or relieved & grateful that it's working for DS or what it is. Speaking of people in white coats in labs, some years back DH met a guy who was doing some research on a specific type of battery. He was quite downbeat (?) about it, seeing it as just research. DH pointed out it may make a whole lot of difference to a person with a CI going on a long trek somewhere and wanting to carry only a few batteries with him and make sure they are moisture-proof, dust-proof etc. I hope those working on the speech processors get to see the impact of their work on real people's lives.

Dominic is doing v well with the implant. Sometimes I realise I treat him as a completely hearing child, he just hears so well. On the other hand, I find myself calling Sylvia's name (she's 2 and can hear) and waiting until she looks at me before I speak to make sure she can lipread We were having dinner the other day and DH told me that Dominic ate so little. Dominic's head was in the plate at the time and DH spoke v softly. Domi just replied "I ate loads" and that totally startled both me and DH. Yesterday I said to Dominic in a whisper, out of the blue, from behind his back and while he was playing on PS2 (noise, cncentration elsewhere) "Wacky Warehouse" and he heard it and understood it immediately. Or I was in another room laughing with DH and something DD had done and I then went in DS's room and he asked me why we were laughing. Everyday joys and wonders...

V curious now about the PizzaExpress thread. Maybe someone was just playing up pretending to be the other party. BTW I have no connections with the Scottish film industry. I had a boyfriend some 15 years ago whose dad was a film critic for a big Scottish paper, but that wouldn't count, unless you know said ex-bf and can tell me what he's up to nowadays

Hi Christina, great to read about Dominic too. It must be truly amazing for you all. I wonder what it's like for him - emotionally? Has he remarked on it or is he a bit young to be able to relate how he feels? One of the scientists at my Implant Centre said it was just amazing when mapping a young child and they were responding to the really high frequency sounds that only children can hear. I guess you all must have developed great communication techniques anyway, but it's wonderful that Domi can join in with the family exchanges. I know my experience was relatively short, but sometimes it seems like it lasted for years.

I actually think my hearing was deteriorating much quicker than I realised. Comparing what I have now in one ear with the implant, I had already lost this by the end of September of last year. It's hard to measure when it's happening, especially as I'd had perfect hearing a month before that.

Oh, the PizzaExpress thread is here. Seems genuine enough to me, it was from last week some time.