Sunday, 4 August 2013

Trialling a Neptune

                                             Advanced Bionics have given me a Neptune to trial (Thanks AB!). This is the world's first fully immersible, waterproof cochlear implant.  I love it! Let me tell you why: I can swim, shower, exercise indoors or outdoors without any fear of rain, water or sweat impairing its ability to function. It's small and light, it looks trendy and I can personalise it with my favourite colour covers and headpieces (available from Connevans). 

Immersing myself underwater in a bath for the first time to test my hearing ability underwater was, scary, to say the least because I didn't trust electronics and water! I had my other half on standby to fish me out as I tested it! Once underwater, I was amazed, I could hear his voice and hear my body sliding about on the ceramic surface of the bath.... What with the water sploshing about and the grouting groaning underneath the weight of the water and my body, I couldn't handle all the noise and I quickly wished for silence again!

On another day, I spent a whole day in a Spa with my Mother, where I was able to test its ability to hear in a sauna, steam room, Jacuzzi and a swimming pool! Previously, in this environment I would have had to spend the whole day in silence but not that day... I could relax in the sauna and steam room knowing that if somebody spoke to me I'd be able to clearly hear them and I swam in the swimming pool, hearing the water splashing and lapping at my shoulders for the first time in a very, very long time. I could also still hear the music, whilst underwater; it just sounded slightly muffled... In a normal environment, everything sounds slightly louder with the Neptune, because the microphone is in the headpiece, but this is a good thing in my opinion! There is a sensitivity dial too, so you can adjust the sound settings to your own personal levels. 

I've worn it in a variety of combinations, clipped into my hair beneath my ponytail, clipped to my sports bra and attached to the arm band provided by AB. My personal preference is to attach it to my sports bra because I do wonder what people think when it's pinned into my hair! I've had somebody at my running club come up to me (they weren't aware that I was deaf) and jokingly admonish me for listening to music when I'm running in a group of people: "what do you need that for?!" and then he realised that there was a headpiece magnet at the other end, not a headphone! He couldn't apologise quick enough and every time I've seen him since, he banters: "How many more times do I need to apologise!?"

The only downside to the Neptune is being unable to adjust the volume and programs to adapt to the different listening environments without first attaching the Neptune Connect. I often find that running outside requires a different volume to running in the gym or swimming in a swimming pool and I need to carry the Neptune Connect with me to adjust the volume; it'd be nice if one day this component was built in and waterproof too...

It is important to care for the Neptune by taking it apart and using a Zephyr Dry & Store overnight on a frequent basis, especially after being in a wet or moist environment so that the components can dry out. I'd heartily recommend a Neptune for people who are active, because there's nothing on your ear so you can sweat, swim, roll around, climb or jump about to your heart's delight (with an extra magnet in the headpiece)!

Saturday, 3 August 2013

Advanced Bionics BEA International Mentors Meeting in Staefa, Switzerland, September 2012

For quite a few years now, I've been a member of the UK Bionic Ear Association for Advanced Bionics (my CI company) and in September 2012 I was lucky enough to be one of two UK mentors to be invited to the first International BEA meeting in Staefa, Switzerland. We flew out there on Wednesday afternoon and flew back to England on Friday evening so it was a whistlestop tour of everything AB had to offer at their Staefa offices and lots of FUN!

In no specific order of events, the food highlight of my two days was having a chocolate workshop with all of the AB staff and mentors. In this, we learnt how to make a chocolate cup and shoe and took them home as gifts for friends and family. We also were given free license to 'sample' all of the different types of chocolate that we could see laid out and you can probably imagine, we went a bit mad! Dark, milk, plain, lemon, nuts - we tried all different types of truffles... It was yummy and so much fun, in our personalised BEA aprons (that we could keep) that I went back to the hotel with lots of new memories and 7lbs heavier!

At some point, we had a presentation from employees at Phonak (got to see a prototype of the future processor - exciting and jaw dropping didn't cover it!) and had a tour of the huge factory next door to the offices. In there, we witnessed the mind boggling scale at which hearing aids are manufactured at from the tiny, nimble fingertip work being carried out by human workers and the vast, huge numbers of hearing aids that are lasered, cut out, installed, tested in seconds, minutes and hours and moved around the building by robots. Seeing crates whizz around over our heads whilst we walked from room to room only hinted at the size of the building and one wished they could sit in a crate for an exciting ride! (Think of the Monsters Inc film and all the doors) Disappointingly, we learnt that our CIs are manufactured in America, so we couldn't see that in action but for those of us that were hearing aid wearers or used to be, it was still incredibly interesting to see it all in action.

Part of the trip was about creating a short video to be posted on AB's YouTube channel promoting the BEA website so all the mentors featured in a video clip with personalised message boards. It was a lot of fun filming these and you can watch them here:
I feature in both the videos - see if you can spot my embarrassment at having to 'bop' my head along to music!

Just before we went home on the Friday, I gave a short PowerPoint presentation about my experience of having a CI to the other mentors and Phonak/AB employees. This was quite nerve wracking but I felt it was important to increase awareness of the unique and emotional journey that we humans go on when we decide to be implanted with a medical device. It was humbling to hear from the other international mentors who are parents of children that have CIs and we watched a video of a father's son playing the drums and singing in the bath with his Neptune. I work with hearing and deaf children every day and this video brought tears to my eyes (In fact, I don't think there was a dry eye in the room afterwards) because his parents had made the decision to give their child access to sound. A momentous decision that took a lot of courage. One day, I may have to make that decision myself and although I know what I'll do, it won't be easy because it involves handing your child over to surgeons and medical professionals for a life changing operation and lots of work afterwards. But it'll be worth it.

The highlight of the trip for me was making two bionic friends for life, they'll know who they are when they read this, and I'm glad the trip brought us together. We all had so many laughs together at the evening meals and I consumed more alcohol in those two nights than I have done since my university days! Another highlight was meeting the other BEA mentors, who came from the Netherlands, Spain and other European countries. Being together for two/three days and sharing our different experiences of acquiring CIs and mentoring candidates was a privilege. The language differences, surprisingly, wasn't a barrier and we all had a common experience of adapting our communication to understand each other, which helped. I loved being in Switzerland, with the crisp blue skies and fresh mountain air, and I was very sad to fly back to England.

A lot has changed in the last year...

Since getting High Res Fidelity 120 last year, I have experienced a lot of CI "firsts" - too many to note in one blog so I'm going to list them as bullet points and then work my way through them in subsequent blog posts. I have sorely neglected my blog whilst training to become a Play Therapist and there's no written record of my experiences in the last year, so I'm going to rectify this!

Here are the changes:
  • High Res Fidelity 120 (HRF120).
  • Advanced Bionics International Mentors Meeting in Switzerland 2012.
  • Getting a Neptune!
  • Naida Q70
High Res Fidelity 120  
I was excited to be finally using the strategy that my ears couldn't handle all those years ago and I could hear things that I wasn't used to hearing and this was great and I felt that my hearing plateau was climbing again but I spent much of my time confused, wondering why sounds were quieter instead of sharper, crisper! Eventually, after another trip to my audiologist, it transpired that I had spent a whole month, that's right, a whole month, listening through my 50/50 program meant for use with my FM radio system instead of HRF120! There had been a mix up in the order of the programs on the three program settings on my processor and silly me hadn't realised the difference between them. No wonder things sounded quieter, I had been listening on 50% of the sound coming through the microphone... Once this had been sorted out I was really happy with it all and I went off to learn how to process the 'extra' stimulation that I was receiving and this took quite a few weeks of practice, patience and perseverance. It kind of reminded me of the early days of my implant.. In the future, I'll ask my audiologist to write down the order of my programs so that I won't get them mixed up again! 

A bonus of having HRF120 is that ClearVoice (CV) seems much improved; everything doesn't sound so 'clinky' and it's a useful program in very noisy situations such as the car. I just wish my implant was in my left ear, as when I'm driving my CI is on the "wrong side"! I don't use it all the time, like I know some some users do, because I like the additional environmental sounds that CV will cut out in order to highlight speech.

Thursday, 20 September 2012

9 days to go till the 4th anniversary of my AB CI activation

I had my annual programming yesterday and usually, programmings/mappings are very uneventful and I'm in and out of the soundproof room within the hour.. Not yesterday! Yesterday, I had a new program added to my choice and this program had the High Res Fidelity 120 technology added to it. Why didn't I have this already? I hear you ask.. Well, four years ago, my brain and my auditory nerve couldn't handle the over-stimulation and richness of sound and I complained that it was too loud! In the meantime, no audiologist had thought of trying it again... But yesterday I had a lovely audiologist who wanted to try something new and see what I thought of it.

 Initially, she had to turn the volume down and I was instantly transported back to four years ago, when everything sounded robotic and very strange and I felt emotional again. However, within minutes, the 'roboticness' had faded and although things were much quieter than I was used to, I wanted to give my new program a go. My audiologist said that it's usual for the auditory nerve in people with long term deafness to fatigue quickly and my brain would have to re-learn sounds again with the new program. Great(!) I thought, another four years of getting to a good level of hearing again??

Yesterday's hearing test (before trying the new program) showed new hearing levels of 25dB across most of the range of frequencies!! This is so much better than I ever could have hoped for, but obviously those results do not translate into coping with real life situations; accents, background noise and unfamiliar sounds. However, after a day on my new program, I'm finding that things are changing; I can hear speech on the TV at the same time as my own voice or another voice in the room which is a complete contrast to before, usually the loudest voice would dominate what I could hear.  This is exciting, but needs to be explored more!

I wonder what else I will discover with time....??

Tuesday, 30 November 2010

2 years and 2 months afterwards...

and I love my Cochlear Implant more than ever before.. There's a few reasons for this, which I'll go into now...

1. I can watch "I'm a Celebrity Get me out of Here" without the subtitles! I can hear what Ant and Dec are saying, without the subtitles.. This is a challenge in itself because of their Geordie accents!

2. I have been doing an Introduction to Child and Adolescent Counselling for the past 9 weeks and I've been using my FM system (radio aid for the oldies out there!) to help me hear the lecturer better. The FM system works by a microphone and receiver principle, so the lecturer wears the microphone and the receivers are little wireless things plugged into my Hearing Aid and Cochlear Implant. So it sounds like the lecturer is standing right next to me because I can hear every breath she takes and word she says. I've been so happy every Thursday because I can take notes and listen to what she is saying, without having to lipread!!! I can sit there like a normal hearing person and stare out of the window, or fiddle with my fingernails or watch everybody else in the room and still hear what is being said... Of course it helps that the lecturer has a clear speaking voice and there is no background noise bar the hum of the computer and projector.

3. I've been to see an unsubtitled film at the cinema!! I went to see Saw 6 with my boyfriend and apart from not being able to hear the voice on the tapes played in the film, I could follow the storyline and hear what the characters said. It's the first time in 6 years I have been to the cinema and been unrestricted by the subtitled film timings/day. I don't think I could do the same with a crime thriller or a fast paced film where there is lots of information in the audio, but still - it's so liberating and great!

The only downside to having much better hearing than before is the fact that a skill of mine is getting worse... Lip-reading. Without my HA and CI on in the morning or any other time of day, I cannot lip-read my boyfriend! It's because my ears are doing all the hard work now, not my eyes... However hard I try to read his lips, the things I come out with are totally wrong and sometimes hilarious and I go straight to get my HA and CI to put them on because it's hopeless! I'm a little sad about this, because lip-reading is a skill I really value, something I have been doing all my life and I hope it doesn't get any worse - but it's a small price to pay for the above benefits!

Monday, 8 March 2010

A year and 4/5 months later..

and I still love my cochlear implant! I'm loving the fact that life is easier these days, I don't have to rely 100% on my eyes to lip-read people, it's more like 50%.. At the weekend I visited my great aunt and her sons in Sheffield. My great aunt who is 86, does not move her mouth as clearly as she used to and I hadn't seen her for two years so I was not familiar with her lip-patterns. This is where my cochlear implant really had to work hard and so did my eyes. But I found it so much easier to manage, now that my hearing is much better than with two hearing aids.

I've had lots of times recently where I've heard what people have said without lip-reading and this still makes me jump for joy inside! My family are the best example of this story, the people I'm the most familiar with are the people that I can hear without lip-reading the best. I also have to tell you all about the two times (in the same day) that I had conversations on the phone with complete strangers! I needed to cancel a hair appointment and Typetalk were taking an age to answer my call so I thought "why not try and ring direct?". After all, how complicated could the call get, I'm only cancelling something!? It went relatively well, I did have to ask them to repeat things a few times and this is where my manners went out the window - "whhhaattt??" But I put the phone down and I felt like "I've just made a phone call to a complete stranger, am I insane?!?" Yay!!" Later that evening my dad's car broke down and we called the RAC (through Typetalk) to come out and fix it. The RAC said that they would call when they were 5-10 minutes away so I explained, ok as long as the call is quick and simple, I can answer it.. The RAC man in the van phoned and he asked "What's the problem with the car? What type of car is it?" I heard both these questions really well but we did have a little misunderstanding towards the end of the call and I had to explain to him to talk in short sentences otherwise I could not understand! I thought that he said he could not sort the problem out and it was best to take the car to the garage in the morning and that he was not coming anymore. It turns out (when he arrived 5 minutes later) that he probably wouldn't be able to sort the problem out and it would be best to take the car to the garage in the morning but he hadn't said that he wasn't coming anymore!! I heard half of it right and the guy was very sweet, saying that his hands free set wasn't very loud and he couldn't hear me very well half the time anyway! I haven't got back on the phone again since but it's given me lots of confidence that I hope to do it again when the opportunity arises :o)

My boyfriend can say things to me when I'm leaving a room and instead of stopping, turning around to lip-read him and then leaving again, I can keep walking and see if I hear him correctly and then answer whatever he's said! Nine times out of ten I can hear what he says and it's so nice to be able to do this as it just saves time and makes me feel like a 'hearing person'..

My next challenge is to go to the cinema and watch a film that is not subtitled.. I want to see how much of the film's storyline I can understand and then perhaps I can go to the cinema more often than I do now.. I'm very restricted to Sundays, which is when most films are subtitled and I'd love to be able to go on a Friday or Saturday night.. I'll let you know how I get on with this! I'm also going to get my new audio book out soon, it's called Death is now my neighbour by Colin Dexter. Watch this space!

Tuesday, 8 September 2009

Approaching the ONE YEAR mark!!

Wow doesn't time fly when you're having fun?? On the 29th September it'll be my one year anniversary of having my C.I activated.. I'm so glad I've kept this blog going because already I'm forgetting how I felt in the early days of this experience and things are still changing and getting better. I haven't been to hospital much in the last few months which is such a contrast to the early days when you're pretty much there every week! I had a new hearing aid called Phonak Naida fitted on the 21st July and I got used to that pretty quickly and I was so happy because it boosted my hearing up in my left ear. Going from hearing not very much speech to hearing the gist of everything (with lip-reading) again was lovely. Put that together with my implant and I was very happy!

Things have been quiet on the audiobook front because I've got out of the habit of doing it before I go to sleep at night and because most nights I'm so tired I just want to turn off the light and sleep so I've hardly done any listening practice.. Once I'm back into a proper routine I'm sure I will continue it!

The best thing about this implant recently is hearing what people have said without lip-reading in a quiet situation (one situation in a car!!) and this is such a good feeling because it makes me feel like a 'hearing person' haha.. I heard my boyfriend's father (sitting in the front driver's seat and I was sat behind him while the car was moving) say: "If there's nothing there, we'll just go to Ikea!" before we all went for a walk around a park.
Last week while sorting files and catalogues with a colleague we were having a conversation and I spent most of the time looking at what I was sorting, not at her lips!
I'm finding most of the time that if it's a quiet room and what the person says is in context to what we're doing - be it cleaning, talking about a topic or 'pass the ketchup' at dinnertime - then I can mostly hear what the person has said. It's great to not look at the person who's said something/ asked a question, give an answer and then look up to see their astounded face when I've heard/ answered correctly! Tee hee! However, none of the above applies when I'm tired or in a noisy situation - this is where lip-reading comes in very handy.

My only complaint about the Advanced Bionics C.I brand is their batteries. As I've completed my first summer holidays with an implant I'm now aware of a practical problem. My batteries only last for 9 hours which means I need two batteries a day (more, if I'm going to be awake into the early hours at a special party or up early for a long day). As AB only give you 4 batteries to rotate this means I need to charge all of them every other day or charge two every day. Sometimes (and I've done this twice now) I forget to put the charger on at night to charge all 4 batteries and so I wake up in the morning and I have no charged batteries to wear! Luckily I'm peripatetic and spend a good hour in my car first thing so I can make use of the in-car charger which plugs into the cigarrette lighter compartment and I can charge maybe one battery. Also, I went away for 4 days and took the charger but OH NO I forgot thee three other batteries which were at home on my bed in the little black zip up holder and which blended in with my black duvet cover so I didn't see them and forgot them! I had to spend 4 days charging the battery overnight, not wearing my C.I until after breakfast at 9am and then charging the poor one battery whilst I was eating my dinner at 5pm and then I could hear for the rest of the evening. I do wish I had chosen Cochlear or Med-el simply because of this battery practicality as they use disposable batteries. Why did I have to be so vain (with the colour caps) and environmentally friendly (with rechargeable batteries)!? When I go travelling or camping in the future, charging my batteries is going to be a problem that needs to be carefully thought about... grr!! Advanced Bionics - change to disposable batteries please!!