The Dent in the Head Episode

At the site of my implant, there is a definite... lump, I suppose you'd call it. It's not huge and not noticeable but sometimes I do have the idea that I can feel it... feels a bit sensitive... not really sure how to describe it as it's certainly not painful, just... there. I know that in the beginning I was sure it was moving... but I've been checking and it really isn't. I could wish it was a bit flatter against the skull but honestly, not a hindrance really.

However, just the other night it suddenly really hurt. Ow! What the...!

Felt like I'd been stabbed, right on my implant site! 

So I grabbed my CI and took it off, rubbing my head where it was sore. I was surprised to feel a definite dent, right in the middle of the implant. 'Oh no, something's not right, it's 'rejecting' or something'... in a bit of a flap, you can imagine.

So I rush up to where J is sitting and get him to feel... 'can you feel that? it's a dent eh? What the hell...?' J felt it too and did a sort of 'ermmm...' noise as of course NO idea... So I'm holding on to the CI in my hand and explaining to him about the sudden shooting pain and I turn the CI over in my hand... and there is inexplicably, one of my hearing aid batteries attached via the magnet, right in the middle of the side normally attached to my head. 

A wee light starts to shine... oooooh!

THIS was obviously the cause of the dent. 

When I put the batteries into the CI this morning, I 'lost' the one I need for my hearing aid and had taken a new one out of the pack as I couldn't be bothered searching the floor for it. 

Found it!

It had obviously been whisked up by the CI magnet just in the passing and I (again, obviously) never noticed. The strength of the magnet is patently sufficient to grab completely around the small HA battery so it all just got pressed into my scalp atop my implant. How bloody bizarre can you get? There was such a dent, completely round and right in the middle where it was hahaha. I'm so glad the battery didn't just fall off when I removed the CI as I'd have been phoning the hospital and had them examining things and trying to figure out the cause. No-one would have thought of that I'm pretty damned sure! 

As it is, it has taken a couple of days to go back to 'normal'. To be honest I'm not sure if it has finished inflating yet and it still feels... well... a bit weird. But I'm not really worried, should be fine.

Bloody eejit.

I'm given the 'all-clear' kinda sorta

I attended the UMC again the day before yesterday. Just a check here and a tweak there to the CI. No great changes made, but I left with the settings picking up just a bit more of the higher tones. Spoke with the speech therapist but didn't even practice anything as it just wasn't necessary. Telephone use is still not great but that just seems like a 'luxury problem' really and doesn't worry me. I don't need it for work and I haven't used the phone for a 'blether' for years so while I can use it still with my hearing aid (not great, but serviceable) I'm not making too much a point of it all.

I'm still not set up satisfactorily for using my streamer on the computer (for listening to anything on there... say Skype, or a film) but I also don't feel any urgency there as I manage reasonably via my HA.

I need not show my face at UMC again until the 12 month check, which will then be followed by annual checks... a requirement for the insurance side of things. Unless of course I myself feel the need or something goes wrong with the CI, whatever. So that's me until February 2015... or thereabouts.

My HA is actually due to be replaced but the longer I manage with it, the better really. Like any washing machine, HAs have a designated life-span really, and if they last longer, it's good but you could probably be doing with an update eh? And with HAs, it's best not to wait until it breaks before replacement. Your washing can pile up, but you don't want to be without your ears! Of course I have a 2nd one to 'use up' if this one conks out so I'm hoping I can put it off for another couple of years because it's always such a bloody rigmarol and it *always* takes me up to 18 months to have the chosen model 'fitted' to my satisfaction. The idea of starting that all up again! All the more glad that the CI didn't take so long :) Of course I will only be getting one new HA, not two.

So 'that's me 'til Tuesday'!

It's as good as it gets and unless I was to get a 2nd CI (not going to happen) I am at the best level of hearing I can get. Oh unless of course a new hearing aid was to improve things... always a (slight) possibility. I am eternally grateful for being given one and do realise how lucky I am. I have read loads of blogs from people in similar situations and have yet to come across one where things went quite so swimmingly if I'm honest. I also speak and email with other CI users and every story is different, every road travelled varies from person to person. There is no, one, 'end result'. It has all made me feel kind of a fraud. I'm not! But I have to keep telling myself, reminding myself every morning before I 'plug in'... 'I AM STILL (almost completely) DEAF' and I genuinely needed this help because with my CI on I'm so much more in tune with the hearing world.

Fun factoid... I still watch TV via my audio loop, but with the television's sound OFF instead of ON :)

Having that chatter at a distance is sooooo bloody irritating! I haven't even *tried* using it regularly like a 'normal' tv viewer because it's so much more pleasant just tuning in to my CI/HA. I should perhaps practice without subtitles as I do hear TV a lot better than before but I still feel the need of them.

I doubt I have much more to tell about my journey so if I blog again, it may well just be for the sake of blogging - getting something off my chest perhaps. Might be best not to get me started on Scottish Independence though!

I actually quite like having a place I can blether without being interrupted ;)

My First Rock Concert with CI

VERY impressive!

Not really a lot to say about it other than that. But allow me to blether a bit more.

J and I took the train from Almere in NL to Dortmund in Germany. Roughly three hours to get there (4 back, no express). We had tickets for a small venue in the suburbs there. We were off to see a particular favourite of J's... the headliners not even being the one he wanted to see.

Steve Kimock, playing with one Billy Goodman, were the support act for Moe... all familiars, but Kimock was who we'd only just missed seeing in San Francisco years ago when he played with Zero and his guitar playing is legendary so he was the man J really wanted to see. I just go along for the ride although I generally love it all... when I can hear it reasonably enough.

I honestly didn't think I'd hear too great as the house stereo, which is a good one, doesn't come over all that well. So imagine the surprise when I realised I was hearing things fabulously! And things improved too. All these years of numerous concerts... ach, I heard not bad, but as things are very loud, I normally switched my HAs off to start with, then I'd keep trying them switched on to see if I could actually hear a particular instrument. Usually... not so much!

But what I was hearing now via my CI... wow! Yes, loud, but not uncomfortably so. When it did get too loud, I used my remote and turned reception down a couple of taps and lost the buzz sound that was occurring... then the implant seemed to 'learn'... or my brain did?... and it sounded just fine and I could turn it up again.

I took my CI off my head for a few moments to try what I could hear with my one hearing aid... HAH! virtually nothing useful! Rondo quickly back on my head... this was just GREAT.

Billy and Steve were just, well... fantasmagorical, so good. Moe were pretty darned fabby too actually but we left before the very end to avoid the rush for taxis being ordered back to our hotel (no other way for us to get there really). There were maybe 75 folks in the crowd, so a nice intimate atmosphere and J got to speak to both Billy and Steve... and Steve's wife and kids for that matter as 'stage-door Jimmy' hung about to get his new CDs signed and they were really nice about it.

Steve and Billy

I feel I can really judge now... such a full sound for just two guys with guitars!

Moe

So I'm well pleased with my Rondo's functioning, believe me. Never expected it to be quite so good as this and can't wait for further gigs - although we have nothing in the pipeline at the moment.

I'm now wondering just all what I've missed over the years!

'Promoting' my RONDO (in Dutch)

I was at a lovely 'get-together' just last Saturday and although it was a group of folks (about 75 present) all deaf/HoH, many with a CI... not ONE I spoke to, or who approached me to ask, knew that my CI actually was a CI... most thought it was a BAHA (Bone Achored Hearing Aid). I was asked to therefore write a wee review for all to see. I'm doing it in (my version of) Dutch so any English speaker needs to use a translation programme if they want to read further. Seemed easiest to post it here.

Dat was me een hele leuke dag met de mensen van Stichting Plotsdoven! Ik heb ook fotos op Facebook hier als er nog interesse in is.
Het was vroeg uit de veren en de trein pakken naar Driebergen vanuit Almere. Zoeken naar het venue was een kwestie van je neus volgen naar de vlakbij het treinstation gelegen zaal... perfekt.
'S morgens was aan het uitleggen van de begroting en jaarverslag geleend... niet boeiend maar noodzaakelijk en redelijk interessant. Makkelijk te volgen ook, met de keuze uit tolken NmG, NBT, schrijftolk op de grote scherm, en horen via ringleiding of soloapparatuur. Altijd een verademing bij zulke gezelschaap want je weet dat er altijd aan gedacht is. Het is mij altijd een doorn in het oog dat het niet overal aanwezig is (minstens een ringleiding!) want 'ik kan niet de enige slechthorende in dit zaal zijn momenteel!' (Dat ben ik - aan het zeuren bij waardanook waar de ringleiding 'wel aanstaat' mevrouw!' maar niet te horen is!!

Hoedanook, we gingen verder met een wel heel lekkere lunch (waar ik ook vragen kreeg over mijn CI), gevolgd door 'workshops' gegeven door een best grappige clown die de meerderheid wel op de voetjes kreeg. Lachen? Ik dacht dat ik een beroerte kreeg, zo grappig. Niet dat een beroerte grappig is... maar ja, als je keurige volwassenen gek zien doen, nou... was wel komisch :)

Ik had al een paar vragen over 'die mooi rondje op je hoofd' tijdens de lunch. Even uitgelegd van 'nee, dit is geen baha, dit is ook een CI'. Verbazing alom. Nog later, nadat alle gekkigheid over was en we zaten te babbelen onder het avondbuffet, werd ik meerdere keren ook gevraagd... 'wat is dat bij jou?'. Er was niemand die het van tevoren herkende... hooguit 'oh, daar heb ik van gehoord'.

Dit vind ik jammer, en ben blij om de gelegenheid te hebben om een beetje over te vertellen (als je al mijn eerder geschreven 'blogs' hier niet gelezen heb (in het Engels).

Dus... zonder dat ik eigenlijk reclame wil maken, kan ik alleen maar goeds zeggen over de Med-El Rondo. Ik wil niet zeggen dat het een betere geluid geeft... daar niet van... want ik heb OOK de Med-El Opus2 (achter het oor model) gekregen en daar hoor ik even goed mee. Maar met de Rondo, zit alles in het 'dopje'. Er hangt niets achter je oor. Het plakt fijn aan de magneet in je implantaat. Er is ook een haast onzichtbare draadje met een heel klein krokodilgespje om in je haar te klippen voor als het om wat voor reden ook van je hoofd valt. Je krijgt ook een langere om aan je kraag te klippen als je dat liever heb (of als je kaal ben :) ).

Het dopje, en je afstandsbediening, komt in maar drie kleuren, antraciet, licht grijs en wit. Ik heb de mijne wel met precies passende stickers geplakt... net zoals je bij je mobiletelefoon doet. Die krijg je hier - Skins - en trouwens voor andere modellen GT ook. Als je langere haren heb kan je alles gewoon verstoppen en omdat er niets achter je oor hangt wordt het echt niet opgemerkt... maar ik vind het zo leuk, en ben er trots op ook, dus, al kan ik het toch niet verstoppen met mijn kort haar, ik vind het zo'n aanwinst dat het een mooie sticker erop verdient.

Je moet het wel natuurlijk droog houden, maar er is een silicone dingetje eromheen tegen (kleine) botsingen, als je het toch laat vallen... weer, net zoals om je mobiel, het helpt maar een beetje... maar helpt ook tegen vocht dus je kan hem wel meteen op handdoekdroog haar doen bijvoorbeeld, zonder het te missen omdat je haar nog nat is. En een petje dragen is ook handig en niet belemmerd door je CI (en, belemmert je CI niet).

De Rondo gebruikt 3 vervangbare batterijen. Van Med-El kreeg ik een lijstje om in te vullen (en na drie maanden op te sturen) met de dagen en tijden van wisselen. Opdat ze het weten zeker :) Maar dan kom jij ook achter net hoelang je batterijen meegaan. Met een hele dag dragen (zeg maar minstens 16 uur) moet ik om de drie dagen (heel soms 4) van batterij wisselen. Je krijgt een piepsignaal als ze aflopen (ook gaat er een lichtje op je hoofd flitsen, wat best grappig is) en die word om de paar minuten een keer of tien herhaald, dan zijn ze echt op. Het wisselen is simpel en zo gebeurd. Je krijgt ook 3 verschillende sterktes van magneten. Ik denk dat die zijn vooral voor als het een beetje gevoelig is na je operatie... maar ik heb niet eens de sterkste op en het plakt mooi.

Omdat andere modellen met een accu werken ipv batterijen, en die wordt geleverd in je koffer, krijgen Rondo gebruikers gratis batterijen regelmatig toegestuurd, 2 jaar lang. De kosten van 2 jaar batterijen komt ongeveer overeen met de kosten van een accu, die na ongeveer 2 jaar toch op eigen kosten vervangen moet worden. Een mooie en eerlijke oplossing vind ik.

Ik had er geen voorkeur van welke CI dan ook. Ik had van alle drie fabrikanten voor en nadelen gelezen en het was eigenlijk mijn chirurg (Topsakal van UMC Utrecht) die Med-El voorstelde. Je zou zijn criteria voor zijn voorstel moeten vragen want ik weet dat hij ook bij anderen, andere toestellen voorstelt. Voor mij was het om het even en dan zou het de OPUS2 zijn. Prima, was er blij mee! Maar net toen ik mijn operatie kreeg (22 januari 2014) was er een actie gaande... 'neem je de OPUS2, krijg je de RONDO gratis erbij!'... Dat kon ik niet afslaan, zeker niet nadat ik erover las. Niets in je oor, niets achter je oor, alles op de magneet. Superduper!

Ik heb dus een reserve, de achter het oor model... best handig! Ik ben er eeuwig dankbaar want mijn Rondo (en in het verlengde, want, even precies ingesteld, de OPUS2) heeft me heel snel geholpen. Je moet wel kiezen welke toestel onder de verzekering valt en ik koos gelijk de Rondo. Je mag ook die tweede model weer inleveren als je liever niet twee wil hebben maar een reserve is nooit slecht.

Ik ben dus nu vijf maanden 'aangesloten' en elke andere CI drager weet hoe het eerst was en hoe het nu is. Iedereen heeft een andere 'traject' natuurlijk, en het ontvangen geluid is voor iedereen uniek en hoe de individu ermee alles ervaart en omgaat, en ermee oefent, is ook bij iedereen anders. Maar resultaten zijn zeker een indicatie van hoeveel beter je hoort, en die van mij waren een openbaring. Ik zal ze hier herhalen (ook in een eerdere blog opgenoemd).

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CI = Cochleaire implantaat, GT = Gehoortoestel

Verhaal test

Ik kwam uit op 81 woorden per minuut herhalen (en goed ook!) Tijdens de test na een maand was dit maar 44 wpm en ik dacht dat het toen al fantasties was!

Zinnen test - (lettergrepen goed)
98% (!!) Na een maand was dit al 'nauwelijks te verbeteren' op 90%.

Word Test

CI+GT

Klanken - 92% (84% vorige keer)

woorden - 82% (61%)

CI alleen

klanken - 83% (74%

woorden - 64% (45%)

GT alleen

klanken - 73% (62%)

woorden - 42% (36%)

Pre-operatief waren mijn scores zo laag dat ik totaal geen idee heb hoe ik het redde! Toen werd alleen het woordtest afgenomen. Die kwam uit (met BEIDEN GTs)

klanken - 62% (geen GTs 47%)

woorden - 33% (geen GTs 12%)

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Ik ben met zulke resultaten heel blij mee. Het zijn de resultaten van na drie maanden aangesloten te zijn. Zoals we allen weten, het echte leven, echt in gehoorsituaties zitten, is niet hetzelfde als met een logopediste in een geluidsarme kamer zitten praten. Er is geen mens die zo gearticuleerd spreekt en niemand die zoveel geduld opbrengt. Maar het is een indicatie die wel bruikbaar is want we krijgen allemaal hetzelfde testen. Dus nee, ik hoor zeker niet altijd 100% onder normale omstandigheden... volgens mij hoort een horende ook niet altijd 100%... maar ik hoor wel wat mij op 3 millioen keer beter lijkt nu, en natuurlijk dank ik dat aan mijn CI.

Ik geloof niet dat die actie van Med-El nog loopt - mogelijk doen ze het weer een keer - maar als jij nu over nadenkt om een CI te nemen, of je komt nu pas in aanmerking ervoor of je bent aan een nieuwe toe, je zou kunnen overwegen om de Rondo te nemen. Straks wordt alles nog kleiner... goh, straks wordt alles onderhuids gedaan! Maar de Rondo is voorlopig een enorm vooruitgaan vind ik zelf... al ben ik bewust van mijn vooroordeelingen.

Het is natuurlijk ook goed met solo-apperatures te gebruiken - net zoals alle CIs - al ben ik zelf nog aan het zoeken en gebruik nog wat ik al had voor mijn GTs. Telefoneren kan best grappig zijn tot je de beste houding vind - het zit niet lekker met je arm in de lucht om bij de microfoon te komen, maar dan kan je de hele knoop gewoon draaien op je hoofd (duh, dacht ik niet eerst aan). Ik denk niet dat telefoneren ooit een favoriete bezigheid voor mij wordt maar met solo-apparatuur gaat het een stuk makkerlijker (al moet je die ding wel klaar om je nek hebben natuurlijk). Muziek is me nog een beetje een 'challenge' maar ik heb van anderen online gelezen dat het ze goed afgaat dus ik heb een goed gevoel daarover voor de toekomst.

Algemene geluiden zijn voor mij nu al gewoon en waren dat ook al best snel... eigenlijk heel snel. Natuurlijk mis ik nog steeds wat gezegd wordt, het hangt van het situatie af, maar wat ik hoor, klinkt mij goed en totaal niet 'vreemd'. Dat is waarschijnlijk niet aan de Rondo te wijten, meer aan mijn 'gehoorgeheugen', dus ik wil niet beweren dat het aan de Rondo zelf ligt dat alles zo vooruitgegaan is. Het is gewoon een combinatie van mijn CI en mijn hoorniveau, plus oefenen natuurlijk.

En, ik kom dit net tegen... om mijn Rondo te beschermen tegen nattigheid onder het zwemmen :) En hier is een mooie filmpje met hoe dat moet werken. Maar ik vind nog geen link naar waar dat te koop is.

Ik hoop dat anderen hiermee nu meer inzicht hebben over die rare knop op mijn hoofd en dat het nu meer (h)erkenning krijgt. Baha's zijn ook handige dingen, maar dat is mijn mooie Rondo niet!

Vraag maar raak als je meer wil weten.

Addendum: ik heb sinds het schrijven van deze blog wel die 'Waterwear' en Skinfit headband gekocht. Geweldig service van Med-El, moet ik wel erbij zeggen. Moet nog de rekening betalen dus echt gewaardeerd dat ze het via de post opstuur. Ik heb maar een opmerking want ik kwam pas later achter dat je ook hele dure speciaale batterijen nodig heb als je de Waterwear systeem gebruik. Gewone raken kennelijk meteen op (moet ik nog testen maar dat werd me gezegd). En die speciaale batterijen zijn duur, alsook maar per 30 stuks te koop van Med-El (dus ik moet ze elders zien te kopen). Ik zwem niet eens vaak! Dus al gaan de batterijen +5jaar mee, raak ik nooit 30 stuks op. Er is nergens melding van gemaakt dat ze nodig zijn maar daar gaan ze nu wel verandering in brengen... zeggen ze (na mijn klacht hehe) want je koopt nimmer een auto zonder motor he? Nogmaals, geweldig service van Med-El.

3 months and counting!

Hard to believe but I'm a week past three months since SO day! And it's all good.

I had a full assessment last week and tomorrow I get a (more or less) final adjustment to settings and my hearing aid(s) fixed for best use too. I'm still not fabulous on the phone and actually prefer using the HA (if I have to talk on the phone) so perhaps that just needs practice... and time. It's also kinda tiring holding the phone up to the CI so not really conducive to having a blether with anyone. I would like to try a CI programme that helps for listening to music but that always had to wait until 'normal' hearing was optimal. And I still need to find a double headed jack plug for the computer so I can use both my streamer to my hearing aid and another mic to the CI as listening and talking on there (Skype especially) with just one ear, is not great. I'm not crazy about all the wires but I can also use my 'reserve' CI that is behind the ear and that works wirelessly... it's just a bit of a rigmarol... not very spontaneous.

My assessment could not have gone better though. Wish I'd done as well in exams when I was a kid!
What they do is sit you in front of a speaker and fire words at you, CI only, then CI + HA. I have to repeat the words of course as well as possible, saying just part of what I hear rather than nothing if I'm not sure. Then I have to repeat sentences. Followed by a timed repeat of a whole story, sentence for sentence. So pleased with myself, I did really, really well. And it was all without reading lips, just hearing as the speaker wasn't visible. Of course it's all done in a soundproofed room and everything is well articulated but there has to be a bottom line to measure things. 'Real life' situations are of course skewed somewhat with noise around you and varying levels of articulation and pronunciation and that is always going to affect things.

Story test
I got to 81 words per minute being repeated (properly too!) At the one month assessment this was 44 words per minute and I thought I did great there!

Sentence test - (syllables correct) 
98% (!!!) At the one month assessment this was practically not to be improved at already 90% :)

Word test 
CI+HA
sounds -  92% (84% last time)
words - 82% (61%)

CI only
sounds - 83% (74%)
words - 64% (45%)

HA only
sounds - 73% (62%)
words - 42% (36%)

Pre-operative the scores were so low I don't know how I coped... I really cannot imagine any more! Only the word test was taken then and they were (with BOTH hearing aids):
sounds - 62% (NO HAs 47%)
words - 33%  (NO HAs 12%)

So, a full improvement in all situations since two months ago and you can see that the HA is (next to) useless on it's own yet really does give the CI that extra little boost. And a three zillion percent improvement (ok, I know you can't get more than 100%) since only October 2013. Such a difference. I hope I'm reading all the results from the letter I just received, properly as I'm not sure how pre-op and post op HA results differ (although I suppose it can just vary and it is only very slightly despite being two versus one HA).

Anyway, it's all about what I can hear NOW not what I could hear THEN. And jeezo that's plenty.
Fecking birds would drive you potty! hahaha... oh I do still love them, honestly but they do go on when you're sitting in the garden of an evening. Music? well that really does need improving but at loud concerts I have always taken my HAs off anyway. Was just (am still) hoping that it will improve... it has already somewhat, just not what i was hoping on... yet. Oh and I can hear myself whistle now! I was always one of those annoying types that whistles all day long... tunelessly or otherwise, I'm no virtuoso whistler by any means. But I've missed it over the last years as can't hear myself do it... it's just air I know is passing. I remember a boss telling me that 'in the old days' it was forbidden to whistle in the office and I told him he'd have had to sack me then as I couldn't stop (yeah, that annoying whistler was always going to be me). I've never smoked but have the lines around the mouth with the same kind of pouting... whistling! hehehe. So I'm back up and running with the old 'whistle a happy tune' nonsense. Sadly out of practice... who can I annoy next?

After my last visit to UMC I paid a visit to Utrecht's Botanical Gardens (375 years old btw) which are very nearby the hospital (as I finally found out). Spent a lovely couple of hours wandering all around it, enjoying a different kind of quiet. Frogs are loud I know that now! And it was nice hearing the bees at work. And instead of seeing the gardener snipping the lawn edge, I could actually hear him doing it... and talking to his mate the while!

Frogs are LOUD!

I could hear the bees in the hive.

I'm not sure I will have much more to tell about my CI here in the blogosphere and it's not like I'm that regular. I may or may not continue in blethery vein, as mentioned at the top of the blog page. I only know that I will be hearing about things I might write about much more easily than I have done for years.

Sights and Sounds

I had a really rather lovely day yesterday. Took myself off to the annual contact day of the Society for Sudden (& Late) Deaf... stichting plotsdoven.
Was well organised and in a lovely spot. Got me out of bed at the crack of bloody dawn for a change and had me back in my bed totally bushed, before midnight (very unusual these days). It was very enjoyable and I was home around 7pm so it's not that I was partying late or anything, but they had me marching across fields and suchlike so...

How could I resist those ears? Answer: I couldn't :)

The day started with a 'klankenconcert'... a concert of sounds. I had no idea what to expect but understood once it started. It wasn't so much a 'concert' as such... more just a demonstration of all the gongs, bowls, bells and etc. that were in the hall. Really relaxing actually, and lovely how they slowly went through the audience of around 100 folks, letting us feel the sound waves and hear the sounds close up. Not everyone there could hear everything (if anything) so it's a lovely way to include all folks with all types of hearing levels. I could hear most things but I was continually lifting my CI off my head to hear the difference with just one hearing aid in... and it was a huge difference! A tuning fork buzzing on your spine is quite amazing, and to feel sound waves as far away as 2 inches from the brass bowls... wow. The Tibetan ringing bowls of varying sizes were nice to listen to and the giant gongs... wow again. And you've never lived until you feel a didgeridoo through your stomach. All very clever, I can really recommend it, for those with good hearing too... have a look at klankenkaravaan.

Next up, we were kind of a 'captured audience' for filling out a questionnaire on a bunch of films we had to sit through. All for a good cause though, and fairly interesting. It was for 'Dutch assisted with signs' (NmG - not the same as Dutch Sign Language btw) signing translators. We had to watch 2 little films three times. Each film was signed, three different ways. Once with every word said, fully articulated and with NmG, then with more mimicry (? or grimacing), then with practically all facial expressions and signs.
Now, although I have had 2 courses of NmG, I'm not at all practiced in it, so missed 98% of the conversation at the best. I also found the sound being on distracting because well, you're listening and trying to watch lips which are running behind what you can sometimes hear. Also, for HoH folks (like me), while I understand that expressive faces can be helpful, I cannot follow a conversation when I can't read lips... CI or no. Or put another way, I pick up more of a conversation when I can read lips, so, just the odd word thrown in, and loads of facial expressions with no words and with signs... nope, no good to me at all, even if I knew all the signs. So I chose (at least I hope I did) the films being signed NmG, translated with no extra facial expressions and fully articulated repeat of the words spoken.
This is what they wanted to know I suppose. "What's the best way of translating via signs, when using NmG (as opposed to Dutch Sign Language)". The questions asked in the questionnaire were a bit confusing too as they swapped values from one question to the next... so there was '...1 being bad and 5 being fantastic' to '...1 being best and 5 being worst'. Perhaps it was deliberate? Sure made you pay attention, but asking for problems I thought. The subject matter was beyond boring too, but that was perhaps just me hahaha... seeing each film three times for 4 or 5 minutes... sheesh! Anyway, hope it all helps, and I'm curious to know the results of the limited research. Great initiative from the society so, well done them.

Next item on the agenda was lunch, which was nicely presented and everyone chatted away to everyone else. I'd met up with T and her man again, so that was nice but they had to leave after lunch. The afternoon was for varying activities and I'd picked walking and mandala drawing. The walk was just lovely as the surroundings were great, company was good and the weather delightful. Or swap the adjectives around.
Was nice talking to different people too... each and every one with a different tale to tell. Some new to the CI like myself, some with years of experience with it and varying degrees of hearing troubles. Others with not so great experience with a CI too! No two 'histories' the same and quite strange really. You tend to think... 'HoH/deaf, gets a CI, now can hear. It's totally not like that, not even a little bit.

I got back in time to join the mandala colouring although I missed the presentation. Folks were still 'chocolate tasting', 'beer sampling' and 'flower arranging' and there was a 'wellness' room where massages, manicures and other pamperings were taking place. Was terrific really. Very well organised and I'm glad I went. A free shuttle bus took me to the train station at 5pm and I was home around seven. Actually bumped into a woman from Almere heading home too, and hadn't even met her all day. We were of course discussing our CIs and I had surrounding passengers feeling my magnet strength, they were so interested hahaha - the Rondo gets lots of attention, even among other CI wearers.

More photos of my day, on facebook, here.

The Birds!

And not 'strictly for...' either! I'm just lovin' it, I really am.

I just can't believe what I'm hearing. If I lift the Rondo just off it's magnet, say a millimeter, I get nothing! Not a peep, not even via the HA in the right ear. Drop it back down and WHAM... the birds just explode into my head. Such a lovely, lovely sound. I really had no idea I'd been missing it all this time. It's no wonder I don't hear bits of gossip! And believe me that's a huge miss hahaha. Now wondering if that will pick up too :)

It's just, I find myself daydreaming as I'm walking through the park/woodland with Luna and can't imagine now that it was quite so silent before... but can just lift off my CI to be reminded. I know you're probably thinking 'yeah yeah, we get it, the birds yeah, you can hear them, yeah yeah'... and I don't mean to bore but jeezo... it's so cool. It's a noise that, well, isn't noisy. It's a peaceful sound, very relaxing. Not irritating at all. I wouldn't care if I never heard the spin cycle on the washing machine ever again (for instance) but this... how come I didn't miss it, until I got to hear it again?  Perhaps I was just protecting myself... in a way? Just forgot all about it. Would be depressing otherwise... maybe?

Anyway, I just really wanted to mention, again, about the birdsong a CI gives you back. Who the hell knows what kind of birds, garden birds mostly of course, and I suppose I can figure out a blackie from a sparrow, but other than that... just birds. I finally managed to pinpoint one blackbird, but he was still too far off for me to see singing even with my specs on. Here he is:

'blackbird singing in the....' erm day-time

I've made some new friends via the CI too... have to say. Also new wearers, it's good to discuss things with them. 'How long do your batteries last?' (various models) 'what do you hear now?' and 'where did you get the stickers?' It's nice to be in the same boat, so to speak, and helpful. I can really recommend trying to meet others or have contact at least online, who also have a CI. Some folks have had it way worse than me, but not for long, and others have had problems with hearing for longer, but not so bad. Everyone has a different story to tell... all very interesting. I have yet to read a negative result (at least from a hard of hearing person) about their CI. All have improved to a significant degree... so even just that is very heartening.

One 'noise' I do worry about is these really minimal little ticks and peeps I hear late at night coming from the kitchen. 'Noise' in inverted commas as it's only just to be heard... but it is a sound. I think it could be the fridge or freezer dripping? J doesn't hear it at all so it's got me freaking a bit that it's mice I'm hearing as I'm pretty sure I saw a mouse in the attic a few weeks back (and the hair is standing up on my head just writing about that - bloody fright!) I try to ignore it, but it's only at night. It's not happening right now and it's quiet here at the moment so... w.t.f? I'm actually too scared to investigate further as well... it's at night! And what if it is mice? Hahaha. So. Just to prove that not all the extra sounds a CI provides are entirely welcome, but I'm still so happy to have been given one.

Keepin' on truckin'

... back and forth, back and forth to UMC. It all adds up, all those fares that you otherwise wouldn't be paying for. But again, grateful to have been given my CI, especially as the full bill notifications came in for... wait for it... €47K and €25K or thereabouts. So, honestly not moaning!

Since my last 'adjustment's were made, everything has sounded pretty darned good. Birds even better than before, and I thought it terrific first day already. Now, a certain someone said it wouldn't bother her if she never heard a bird again in her life, but ... well, that's not what it's about. The fact I can hear birdsong, which is actually really lovely, means I'm picking up higher sounds. Therefore speech is more accessible to me which is really the main reason for hoping on improved hearing eh? Well, to me it is.
I read once that humans actually do rely on the sound of birds because when you don't hear them (when you otherwise should - and you're not deaf) there is something badly wrong... like a storm coming, that kind of thing. I'm sure old time miners were on the alert for no birdsong from their wee canaries as it was then probably already dead from escaping gas, giving them a (pretty minimal but still) chance to escape. Poor wee canaries eh?

Music? Still working on that as I do notice differences, (not always improvements) so it's not great as yet. I've read that it's a good idea to listen to the music of individual instruments - only piano or only violin, instead of a band, or orchestra - to train your brain to recognise things better. Don't know if I'll go that far actually but good to know there is a method for it.

Have been at a scheduled 'CI Day' in Breda recently too. Interesting talks given by each of the three CI manufacturers (Med-El, Cochlear and Advanced Bionics), basically for 'interested parties' and no 'hard sell'. They are all much of a muchness, but also, all different, if you get my meaning. Pros and cons to each model and in my opinion best chosen by your surgeon as he'll know which would suit your type of hearing loss better as well as have more experience. Of course you have to trust the surgeon not to be 'on the take' hahaha, but I'm pretty sure that is definitely not the case here in NL. I'm very happy with my Med-El Rondo in any case.

There was also the opportunity to learn 'What's in my briefcase' from each of the manufacturer's too, and as there was only me and one other person with a Med-El, (and only me with the Rondo), we had practically a private consultation explaining all the bits and bobs (cables etc) that come in the snazzy briefcase with the CI. I also met up with a woman I met before via another CI wearer and she had since had her op and was to be switched on in a few days... which has since happened, much to her joy so far. Her and her man gave me a lift to Utrecht station, which was half the way home, and we had a fine old blether in the back of the car.

I have realised I am lucky to have 2 different sets of mics still in my possession from an old employer that, while a bit old are still in good working order and can be coupled to my CI in various ways (I now know since the talks!). Dead handy, if a bit of a rigmarole. One model (the Comfort Contego) I used for Tai Chi last week. I gave the mic to the teacher who clipped it to her t-shirt. I wore the receiver and audio loop around my neck and it made a huge difference to how much I could hear directly in my CI and HA. Who knew she'd been calling out the names of each exercise every time? Not me hahaha! Since the CI, I at least heard that she was speaking (quietly) but just thought it was 'next, next, next'... turns out it's the names. So aye, CI still needs a helping hand and glad to be able to use that mic.!

The other one (Oticon Lexis which was apparently changed to be called the Amigo T10 and is in any case no longer available for some reason) I discovered has a connector that fits to the Opus2 behind-the-ear model CI. I can then plug the Lexis via a separate cable into the computer and this then works for listening on Skype etc., directly to my CI. But then it's still only one ear, same as when I use the streamer to my HA... so hoping to find an adapter jack that will take two input jacks. Getting there eh? Neither of these models have bluetooth so it's all cables and bollix but they were state of the art and not inexpensive when I got them and are still very useful. Hmmm.... streamer is bluetooth so perhaps i should work out how to get that going via the laptop. I know it works bluetooth via my phone but have never managed to do it on the computer for some reason and just use the cable. It's getting complicated to say the least!

My latest trip to UMC was once again for the speech therapist. We've been trying out using the phone with the CI. I'm a bit reluctant to use the phone still as it's not great (yet?). I can hear, aye, and got probably 80% of the sentences she was reading out from her end, but it was still a strain, and this was with a speech therapist articulating her words and talking slowly. And honestly, the best intentioned caller who even knows very well or has been told/reminded that I am HoH, will of course always begin to articulate their words but... nah... just doesn't last. I'd probably be the same myself so I'm not at all critical, just stating fact. Will be trying how it all goes with phone speaker on next time, on both land line and mobile phones. The comical thing when using a handset though... you have to hold it to the CI, where the mic is, of course, and not your ear. Also on my left hand side, so not what I'd automatically do. And if you move your arm, which is easily done when you have your arm up (think; 'scratching your head mode') you lose contact. Meanwhile I'm sticking to texting!

While waiting for my appointment a man in the waiting room politely asked if I was happy with my BAHA. Now these are similar, but different - they click onto your head, whereas a CI hangs on magnetically (and of course there are other differences). So I proceeded to 'sell' the Rondo to him as well as I could... 'night and day', 'fantastic' (as compared to a HA, which he wore one of), and all things positive to encourage him, as he personally was being considered for one he told me. He came back from his appointment while I was still waiting and he might be taking part in some trial or other... didn't have time to explain it fully but boy they're busy with all sorts there. So that was interesting, and I do think I helped him :)

I make a great advocate for them, me! I should hire myself out!

Travelling light

It's been an eventful week since last blether. J and I went to Edinburgh for the weekend to see the offspring and I've since been back to UMC for more adjustment.

I think I mentioned, I was looking forward to trying out my CI surrounded by familiar accents. Turns out it's not as straightforward as I thought it would be - "here, I don't pick up words without listening properly, there I do" (to paraphrase my own words) - not at all actually. I did get the feeling that I understood things perhaps marginally easier in English when I listen and it's true that I do hear a tad more 'in the passing', (I really checked to see). But nothing really that I could call useful in any degree. So HUH!... me and 'my theory'. This is a recurring theme hahaha, but another story.

I used my 'I am a CI wearer' pass as Schiphol airport which means I don't have to go through a scanner. Not a problem there, they just gave me a thorough pat down. But at Edinburgh, on the way home... oho! suspect no. 294 turns up (me!). Jeezo.

After having a lovely weekend, my home town really let me down. I showed the card and was directed through a door next to the scanner... so far so good, but then... 'You can go through this scanner instead of the gate one'... ('this one' being the one where you stand and raise your arms and are well... scanned). So I said, 'no, I can't with my CI.' As I understood it (more later) the scanner can cause damage to the implant so, no thanks! 'That's ok, our coordinator (or someone) will now speak to you then.' Comes a very officious young man, got his whole spiel down pat. Meanwhile, J insists on joining me while being spoken to (thank goodness, but god the FUSS they made! You'd think he was trying to escape the stalag).

Spiel - 'I understand you have a CI, but this scanner is perfectly harmless so just go through there please. Oh you are refusing that? Then we have an alternative for you. If you'd just like to follow my colleague, two female officers will search you in private. Your luggage will also be opened and searched through thoroughly.' What?! No feckin' way! Why such a hostile carry on? It was just scandalous.

We ask how long this would take (we've only got like 40 minutes before the flight to A'dam takes off). 'I really couldn't say madam.' 'Well, why do I have to do this?! I can't go through the scanner, my bloody head could explode for all I know!' I was bloody frantic by now really but I said ok, I'm being forced through the scanner, on your head be it if there is any damage. 'No madam, it will definitely not be on my head, it's your decision. I have offered you an alternative'. Aye right! total bastard that ye ur!

So, anyway I was really bottling it by this time and almost crying to be honest. But here's the daft bit... I handed the processor (the part that attaches to my head) to the other wee man before going through the scanner. He then hands it to the woman who called me through, who then handed it back to me. I really refused to wear it and he accepted that. Then phew, ok, my head didn't explode and everything still works but my heart was going like the clappers believe you me. And the bomb I was carrying, (aka my CI!) didn't go through any scanner or get checked at all. Stupid, stupid, stupid. Proof positive that they are one and all eejits!

Now, not done with that whole story yet but let me just interject this next bit... I have since read more and enquired about 'scanners at airports'. Turns out I was perhaps just a wee bit too worried (are you sensing a pattern? :) ). It's things like MRI scans and PET scans, those medical affairs, that I can't have without mentioning things to allow them to 'take measures', as they can affect the implant negatively. The thing about airports is that I will then definitely set off an alarm, and the pass is just to explain why that has happened. It can also perhaps upset the settings on the CI but that's easily enough remedied, if inconvenient. There is no head explosion involved. hehe, so phew! But seriously, I was upset about the treatment. Why could they not just give me a pat-down like in Schiphol? Use one of the paddle scanners to avoid my head or something? And why, when my luggage was already through the scanner (and cleared might I add) would it then also need to be opened specifically, seeing as I was being searched? It's just ludicrous and extremely customer unfriendly. Telling me 'it's perfectly safe even with a CI' (which turned out to be true, ok) didn't really help because they'd say anything really and you just know they don't know a thing about CIs so... oh I'm so angry about it really. Rats!

So anyway, I'm finally through, as is James, but his bag is held back because... wait for it... the toiletries are not in a sealed (read ziplock) transparent plastic bag like the ones lying around on offer. They are in a sealed (read zipped) transparent plastic bag - the same one they've been in for numerous previous trips here there and everywhere. Quelle horror! So everything had to be overloaded into other bags, just as transparent as the original only not the ones as provided. You wouldn't credit it really. Oh and a tube of whatever was confiscated, as too large, despite having only dregs in it and despite being in that bag for years and loads of trips already. You despair, you really do, but we got away and onto the flight just in time. Bloody carry on.

Just as a wee tidbit to add to the whole scanner affair let me tell you this story. I once acted as 'secret visitor' (can't remember exactly the name) at 'an airport'. I had to try and smuggle a weapon through the gate. This was to check just how well the (random) checks worked. This day I had a 'gun'... a metal lump in the shape of a pistol, stashed in my bra. Four times out of the five 'trips' I made that particular day my contraband was missed. That's four times out of five. If I'd been a baddy, I was through! One person even touched it and asked what it was. I said 'underwiring' and I got the 'have a good flight'. The fifth time, although I got 'captured', they then just laughed ('oh... you!) and still didn't ask to see my weapon. Just took me at my word so really I could just have been lying some more. There were a few unhappy border guards that day believe me. I was dead pleased with myself and my acting abilities hehehe, but really, not good eh? So yes, I understand we do have to have checks, and be thorough blabla... but I still feel it was all a tad overboard and not handled correctly at Edinburgh. Oh, one good point, J was there to help me hear what was said, but thanks to the very thing causing the problem, I heard it all :)

Anyway... today I've been at UMC once more for adjustments. The last two weeks on the latest settings haven't been great if I'm honest. Too much 'boom' with bass sounds and too much 'tinkle' with higher sounds (it's hard to know what to call it hehehe). Still better than my hearing aids, so it's crap to be critical, but it wasn't really comfortable and I preferred the previous setting, but on trying that out, I was noticing more 'boom' on there too.

So we fiddled about, fiddled about, up and down and fiddled about... trying different settings and changing things back and forward. It's quite difficult and they are always pretty patient really... and we may just have cracked it. This sounds pretty damn good. There is a limit of course on just how loud and 'complete' the sounds can be adjusted to.

You have to laugh though - every time, and I mean every time the audiologist asks, 'how does that sound now?'... then that's it, he stops talking! He looks at you with a questioning expression, awaiting your answer... in silence! How the hell can anyone say if they don't talk to let you listen and decide? I tell them this every bloody time but they always forget - it's a bit frustrating. It can't just be me they do this with. Of course then they do a bit rambling on, saying nonsense to fill the space and let me listen for a bit, but why can't they finally learn that part? Just do it already? It's daft really.

My appointment next week is to adjust my hearing aids to their best levels... not really sure they'll be able to fix them as they're 'old' now. I'd rather have them adjusted though, than already go through the whole shenanigans of getting new ones. It takes soooo feckin' long to get a) earpieces that fit well, b) the HA that is best suited to your audiogramme and c) them finally adjusted so that you hear best with them despite what said audiogramme shows! These ones, I do really, really like them, but they took about 18 months to get to a stage where I wasn't back at the shop every couple of weeks... drove me bonkers. And I have 'in the ear' earpieces, with a 'behind the ear' aid, which gave unique problems of their own. I still refuse to go back to the 'shell' type earpieces though, as I hear so much better (when they work right!) with the in-ear ones. The girl in the shop said she wouldn't allow me to get them as they've been rather problematic to say the least. But I really don't think she can make that call so, sorry dear but I'll decide that part.

In NL, we get new aids via health insurance (covered up to 75%, I think is the deal at the moment?) every 5 or 6 years depending on this that or the other. Mine are now six years old so definitely due but what with this year being CI year, I really hope to postpone it all for at least another year, hopefully two. UMC will hopefully adjust both aids to fit my right ear stats and I'll be all hunkydory for a whiley yet.

I really am so lucky. Mind you, I'd prefer ears that did what they are designed for... hearing!

Results and etc.!

Gleaned the following from an article online somewhere...(no idea where now, had cut and pasted it on here 'for later', then forgot about it). So, apologies for not quoting the source.

"Een CI blijt een hulpmiddel", legt Esther uit. "Het zal nooit een normaal horend oor worden."

Translation:
'A CI remains a tool', Esther explained. 'It will never be a normally hearing ear.'

Nicely put Esther, whoever you are :) 

I think a lot of folks think that a CI turns the wearer into just that... someone with normal hearing. Someone even made it clear they thought that now I'd had the operation (and still had no processor on my head at all!) I could now hear. This is of course not so and I can't stress it enough - If the CI is not worn... deaf. CI worn and switched on and even tuned in as best as possible... well, it's next to perfect for each individual (and always an advancement I'd think?) but everyone is different. If I'd been born deaf and never heard a thing ever, then got a CI, I would think any amount of sound could be classed as perfect (I surmise). I am (ok, was) a hearing person, with knowledge of sounds, so what I'm hearing now is (for me) close to perfect, but still not quite. So having one is beyond fabulous, but I do still miss certain sounds a normal ear picks up. Ears are fabulous things - really incredible! 

Having said that all that... check my results here below!! They came in with the post today. Bloody good eh? This sort of test is taken in optimum circumstances (soundproofed room) with an articulate speaker, enunciating nicely. So 'normal' circumstances it ain't. But it of course gives a fabulous indication of improvements. Take a look.

CI = Cochlear implant, HA = Hearing Aid, R = Right, L = Left, xxx = not measured

                                  Sounds / Words
Pre-op
HA L                           41%       18% (?? so low!)
HA R                          33%       18%
HAs R and L              62%       33%

Seems that this definitely advocates for two HAs and shows that having only one HA in is a real disadvantage. With two the scores are so much better (if still crap). I had no idea that this happened, although if I think about it, of course two was always better than one. The debate continues about two CIs, but that's for another day.

Post-op (aka last Thursday!)
HA (R) only                 62%      36%  
CI (L) only                   74%      45% 
CI+HA                         84%      61%

Not sure I understand this result as HA (R) looks like it's more or less the same as having both HAs in pre-op, hmmm... perhaps I'm reading it incorrectly? Will inquire.

--------------------------

CI+HA                          Pre-op     Post-op    
sentences (syllables)  57%         90%   (speaker's mouth not visible)
                                      xxx           100% (speaker's mouth visible) (!!!)

stories                          xxx           44 words per minute (wpm) (mouth not visible)
                                     xxx           86 wpm (mouth visible) (I was getting tired now - I mean                                                                                                           perhaps I'd have done even better if                                                                                                 less whacked out.)

As you can see, I apparently only 'got' just over half of sentences (syllables) spoken before I had a CI, now I get 90-100% depending on whether or not I see the mouth. Again, in these optimum circumstances. But that's incredible really. Very pleased about it all and it's nice to see it in statistics.

We're off to Edinburgh this weekend so I'm quite looking forward to being surrounded by English (ahem, Scots) speakers with my accent. I want to see how I fare there because I do think it's less tiring, just 'hearing, without actually listening'. I am fluent in Dutch but I do have to concentrate more although that's also to do with my deafness. English, and Scottish English more particularly, just gets through easier... I think. Of course J and I speak English all the time to one another, but I don't pick up gossip in the bus, or in any kind of group situation other than in Dutch (or diverse 'English as a 2nd language' plus Oz, Yank and SA accents, if I'm around any of the International Almere crew). In fact I tend to (have tended to) switch off (not literally, just in my head) and don't actively listen any more because I miss(ed) half of what was said - as is clear from the results above! The speech therapist mentioned that I have to relearn, teach myself, not to do this. You folks with working ears can't switch off like I can! nja nja, ni-nja nja! Pardon my vacant look, I'm actively not listening!

Hearing only half of a conversation is tiring... (but so now, is hearing the whole bloody thing!) And it's not that you hear the best half - it's perhaps ever other word, or every familiar word, or three whole words together, then a jumble of grunts, then yaaaay a whole sentence because it was said louder for some reason, then two exclamations and a laugh. So you laugh too! Hoping no-one asks you what you thought of that then! If you're lucky, your brain will have filled in the missing bits fairly accurately. If you have a brain that resembles soup (on a good day) you have totally misjudged things and make a complete tit of yourself. You have to laugh! Which I have found myself doing often enough when I really wanted to cry and hide my face in embarrassment. 

Now? Now I'm being bombarded with, my god... whole sentences! How cool is that? But let's have a proper listen Caroline. But wait... do shut up you there, you're literally doing my brain in! Must you shriek so? You do know what you're saying is bollix eh? Zip it Mrs... You said that already! Jeezo!

So... train, train and train that brain. To accept this bombardment. To decipher it all. Nobody can do it all at once, even if you (me!) do think you can do that 'nae bother!' It's definitely a gradual thing. 

But yeah, wonderful. Honestly, wonderful.

p.s. if this all appears in various fonts and looks terrible, apologies but I have no idea why, or how to fix it.

To be (improved) or not to be (improved).

That really is the question.

Wednesday past was tune-up day. I'm probably being a bit paranoid but when you have these beeps and peeps fired at you, and you have to say whether things sound better now... I do wonder if I'm making a fool of myself. Saying 'yes, that's better than before'... when it's really just the bloody same!? It's hard actually, as the beeps set my tinnitus off big time so did I really hear that beep or...?

However, adjustments were made and the previous settings were moved to the 2nd programme button, so I could return to that if needed. Last time, I didn't switch more than once, just to try it. This time, I keep checking to see if maybe the last one was indeed better than this one. I think maybe it is. It's louder without being annoying and although the tinkles are still there, it doesn't have the boom/pop noises at low levels. I know the idea is that your brain adjusts eventually but it doesn't seem to be moving yet this time around so I think I'll opt for last settings... last before this one that is. Of course adjustments are made according to what I say when they're adjusting things but like I said, it's not easy. Anyway... will continue to check back now and then and we'll see what gets said at next appointment in a fortnight.

Thursday past was a tiring one. First a hearing test (also setting my tinnitus off big time). There is some remaining hearing in the left ear but basically of use to man nor beast. Next came a chat with the CI group's social worker which was funny in a way because when she asked how things had gone and how they were now, I just said all things positive. If J hadn't been there she still wouldn't know I'd had any problems at all! Was totally forgetting to mention the bruising, the black eye, the dizziness that kept on for 10 days... my memory is shocking. Not that I've forgotten it all entirely, but that it didn't occur to me when specifically asked. Eejit.

It may also have been the idea of 'social worker... argh'. Something akin to 'psychiatrist... argh' or 'psychologist... argh'. You talk to them, you keep thinking 'am I saying it right?', 'am I saying too much?', 'should I say this at all?'... or is that just me?! These professions tend to set me on the back foot... so to speak... and yet they know which buttons to press, which questions to put. Oh well, I feel that way anyway. But we survived, dignity intact and all very pleasant :)

Next was the tiring bit, with the speech therapist. First, I had to face a stereo speaker and repeat the words spoken - CI in only, then HA in only. Then I had to face the therapist and repeat phrases she spoke aloud, after reading a synopsis of the story she was reading from (so I more or less knew what she was talking about). She spoke the phrases behind the paper she was reading from. Then another two stories, this time using a stopwatch to check how long I took over things. That was certainly harder but I think I did not too badly. Still to get the results as by this time, not surprisingly, I was actually shattered. Strange but true.

We have some 'homework' again... similar to the tests, with some daft story or other about a princess marrying one of three brothers blabla (HAH!) and although I know the story it's correct to keep trying it repeatedly so, that's what we'll do.

So, still in love with my CI that's for sure. I pity those without one! I love the way it just pops onto my head. I love that you can get stickers to gussy it up. I love the improvement to my hearing, that's for sure! I also went to Almere's deaf club last week to show it off to my friends there. They are such a nice bunch and always welcome me like the prodigal when I turn up still not using enough signs (shame on me after having lessons!). They're all very happy for me with my CI too and those there that also have one were fascinated by the Rondo as it's still new and not well known. I love watching them conversing and trying to follow the discussion. I'm no good at it but also find that strange as you can 'listen in' to folks (if you know signs) even when not taking part. Different etiquette I suppose, although of course, hearing folks listen in to others too. I will continue to visit now and then as they're such a nice bunch and always make me laugh.

Listen via the links below for a fairly accurate interpretation of how things sound through one at first. It's already better (for me) and it's getting better all the time
tralala

Speech (normal): Fragment uit het JASMIN-spraakcorpus/upload/278353_391_1235467348061-Spraakfragment_normaal.wav 

Speech (CI): Fragment uit het JASMIN-spraakcorpus/upload/278354_391_1235467418987-Spraakfragment_CI.wav 

Music (normal): Jess – It’s not gonna be me /upload/278280_391_1235388450903-Muziekfragment_normaal.wav 

Music (CI): Jess – It’s not gonna be me /upload/278281_391_1235388599545-Muziekfragment_CI.wav 

All snazzied up

I've pimped my CI! And the remote too.

You can get these stickers for any model of CI (as you can for your mobile), even with your own pictures if you like. I chose Van Gogh's 'Starry Night', an old favourite of mine. Not expensive at all.
Here they are, showing back and front of the remote control unit:

The remote control is hysterical really. I have to point it at my head when switching programmes, or adjusting volume. I find myself picking it up and pointing it at the TV which naturally, is of no use to anyone. It's just that, pointing a remote at your head -it's weird!


Of course, every time I have the thing in my hand I'm singing Don McLean now too! It's getting annoying hahaha. But have a listen.

Actually, listening, on my computer, is not as easy right now as I only have the one hearing aid that is tuned in to my streamer (which is great for me to hear music with or talk on Skype). I still have to work out how to get the CI connected. Perhaps it's not possible? I also still have to dig out the extra mics I have had for years already. Apparently they are also ideal as extras with the Rondo.

Tomorrow is tune-up day again. I have had a fortnight with the louder settings and it's been all good, have to say. I did not use the 'old' settings even once. So much louder but not problematic even a little bit. 

Birds are sounding even more bird like - I hadn't realised fully at first that it was just electronic noises that were coming through. So much more birdified now (it's a word - because I say so). Real twitters and tweets, trills and whistles. I'm not a birder by any means, but it's so nice to hear. I do still have (fainter than at first) these strange high pitched rattlings, accompanying all sounds... some more than others... and I suppose when things are adjusted tomorrow (harder again?) these will increase once more. They are a bit of a hindrance, but only a bit, and with the knowledge that they will eventually go, I don't really mind them. But I must remember not to act like they're no bother at all as perhaps they can make adjustments to minimise them too.

It still amazes me of course that, despite the CI being so much louder, really, streets ahead louder, it's not too loud. When you make a hearing aid louder, there is only so much it gives you, and things are by no means clearer because of being louder (again, which is why talking loudly to a person with hearing difficulties really does not work). So they are limited in comparison. Yet as loud as the CI sounded at first switch on, it has been made about 6 stages even louder since then! And it's a comfortable sound, very quickly. I suppose my brain does work (contrary to popular opinion hehehe).

We have been practicing with the listening homework I've been given. Not every day, but enough. Not hearing everything said, but now wondering if everyone does always hear everything everyone says? Is there a margin of error... so to speak? Still, it's no big deal to practice and it's interesting to try, just with the CI on and no hearing aid at first, then with the HA in... testing the difference. I look forward too to having a proper test with the CI in then out. I want to see the results there :)

This week we go twice to the UMC, Wednesday and Thursday. I will go alone tomorrow but Thursday we see the Social Worker too. Curious to know what she will have to say. Now in my 6th week since SOday I'm not sure that I'll have much more to report on my CI journey. It's already getting a bit samey and I don't want to be a complete bore about it all. 

I may well just really 'blether' for the sake of it!

Apologies in Advance to Lionel Richie ;)

Hello!

I’ve been at home with you

behind the blinds,

and daily I have read your lips

a thousand times.

I sometimes think I hear you

through the door….

Hello!

Is it me you’re shouting for?

I can see I’ve not heard right,

‘cause you show it in your smile.

When all I’ve ever wanted is to

talk with you a while.

‘Cause you know I don’t hear right

you really know just what to do,

Though signing is too much and

hard for you.

I longed to hear the birds again out there.

And tell you I can hear your voice

from down the stairs.

Sometimes it seemed my batteries were low…

Hello?

Now I have to let you know!

That the CI works a charm

and I’m so much better off.

Can you understand how diff’rently

I’m hearing so much stuff!

Tell me that you think it’s great!

I just didn’t have a clue,

it would be so fabby baby…

thanks to you.

Hello!

Is it me you’re shouting for?

Now you know my CI’s on

And there’s nothing left to do. 

Are you somewhere up the stairs now?

Am I irritating you?

Come on let’s go practice more

For I haven’t got a clue.

But let me start by saying… 

it’s all true.

A short blether

Just because it really struck me today.

I regularly forget my glasses when I take Luna out first thing ('first thing' being not necessarily in the morning, just when I surface :) ). I do not like it one bit but tend to just persevere rather than go back for them when I finally wake up and notice. Spec wearers will know what I mean, you just can't see as far as you should be able to and it's not nice, even if livable. I am after all only away for half an hour, tops. If I was going to be away longer I would have to go back for them... it's one reason why I have them on a chain around my neck like the grammy I am. I know I'd lose them otherwise.

Today I didn't wear my CI as my hair was still wet from my shower and you mustn't let it get wet at all. So I only wore the hearing aid on my right ear. It's such a beautiful spring-like day, bright and sunny. My specs are on, my usual one hearing aid is in... off we go!

Well it was nothing short of horrendous! How on earth have I lived? I felt totally bereft. Yes, I could still hear things, just not much. Where are the birds? Somebody take this pillow off my head please! Of course I did wear two before, but I was (almost) used to wearing just one, since the operation. It's now practically incomparable!

The CI doesn't make things louder as such, it's not like when I use a different programme on my hearing aid that turns up the volume somewhat, and besides, louder is not generally clearer (a mistake usually made by everyone you speak to who talks louder instead of more articulated). It's just, well... richer with the CI. More 'normal'. It's hard to explain really but the quality of sound I'm getting is so much better, despite the continued 'tinkles' by certain sounds.

J asked why I need to wear my HA at all so I tested the difference, with and without. With is definitely better actually, gives a more rounded sound. He then posed the question 'if you had to choose, just HA, or just CI, which would you have?' Well there is no contest - CI all the way!

I will be getting my HA settings adjusted too (I think?). I'm due new ones but perhaps these can do with adjustment for a while yet. This also means I will have a spare one for the right ear. When I do get new ones, there will be no point in getting two as the hearing in the left ear is now virtually gone and useless even with a hearing aid - despite what I said shortly after the op about the hearing having been preserved. It's so marginal it's not worth worrying about. The CI takes care of it anyway.

Oh, and I can wear my cap(s). Not a problem after all! Sorry for the cap haters :)