A week after switch on

Well, it’s been nearly a week since my cochlear implant was switched on last Thursday and, in terms of what I can hear, it has been quite a week!

 

Last time I mentioned that the adjustments the audiologist made to the implant on the second day of switch-on made a huge difference to what I could hear. Since then I’ve been able to have conversations with Victoria without my hearing aid in the other ear and can often hear her even when she is some distance away. The hearing therapist had given us homework, similar to the exercises I outlined in my last post and I am now able to hear the words easily in nearly all cases. While I could hear Victoria’s dulcet tones (she told me to say that) very easily, the test would be whether I could hear other people speaking. So,  we were interested to see how I would get on when my PA came to work on Monday as I’ve often struggled to hear her more high-pitched voice. Well, after a couple of minutes of being freaked out by how deep and manly she was sounding through the implant (!), I could hear her just fine. I was able to chat to her in the car, which I haven’t been able to do previously, and I could even here some of what the guy in the shop was saying to me, which is a definite improvement.

 

I bought a pair of cheap headphones so that sound from my radio/computer etc could be brought directly to the implant. The way the implant is designed makes it easy to put a pair of headphones over the top, and straight away I was able to hear a football match on the radio. I couldn’t get every word, but I could follow the gist of what was going on. I listened to another couple of games the next day and it got even better. I’ve also been experimenting with audio books and talk radio to see how much I can hear, and, the answer at the moment is pretty much everything. Music still sounds pretty horrible but I haven’t spent much time getting used to that at the moment. All in all, I’m really pleased to be doing some things that I really enjoy, but haven’t been able to manage for quite a while  🙂

 

The headphones are only a temporary measure. When the stuff from Advanced Bionics finally arrives at the hospital, I’ll be able to use something called the ComPilot. This clever little thing is warn around my neck and can be paired with my Bluetooth devices, i.e. my Iphone and laptop. This will send the sound directly to the implant which should improve things even more.  If you’re interested, you can find out more here: http://www.phonak.com/com/b2c/en/products/accessories/compilot-tvlink-s/overview.html

 

I’m very lucky that the audiologist at my hospital negotiated hard with Advanced Bionics and persuaded them to provide the compilot as standard to their patients. Great news for me, as it’s not cheap!

 

I’m hoping it will be available when I go for my first mapping session on Friday. I’ll update the blog on Saturday with how that went 🙂

The big switch on!

Firstly, an apology for being very slow in updating the blog—it has been quite a few days!

My switch-on was scheduled for 1.30 on the 19th September so my wife and I travelled down from Buckinghamshire at lunchtime to give us plenty of time. After braving the tube and a little walk in the rain we arrived at the hospital and went through to my appointment. Unfortunately, the actual sound processor I was going to have hadn’t arrived from the manufacturer (Advanced Bionics) yet, but they had another one (same make and model) that I could use in the meantime. The only difference was that it was not the colour I had asked for… not that that really matters to me! 😉

The first step was to fit the processor which was connected to the computer. The electrodes were tested and I heard a variety of beep sounds at different pitches from quite low to quite high. There are 20 electrodes in all and the audiologist was testing a few at a time so this was fairly quick. She then switched it on…

I have to admit here that my first impressions were… well… underwhelming. While I’d tried to keep my expectations low, it was hard not to hope for miracles! Everything sounded muffled and pretty awful quite frankly. The audiologist cranked up the volume a little which helped but it still wasn’t great. Thinking back, it was probably better than I thought it was at the time. I could hear voices but it was like they were mumbling. My wife says that she could tell that I was hearing more simply because she wasn’t having to repeat everything that my audiologist said anymore. We went for a little walk around the hospital to hear different noises and I could hear various sounds such as footsteps, the lift etc. The audiologist had given me 3 different programmes to play with (there is a maximum of 5 available). The 3 I had were simply louder volumes. She said that in the 24 hours between my switch-on and my second appointment, I’d probably go through those programmes, as my brain got used to the sounds and wanted more. She disabled the volume for the first day (presumably to stop inexperienced users turning it up and blowing their heads off)!

So then it was the journey home. We just avoided rush hour and had an incident free journey home. On the tube, I could hear little snippets of the announcements. For example, I couldn’t hear the name of the station we were at, but I could hear things like ‘this is the Bakerloo line, change here for the Jubilee line’.
During the course of the evening, I tried various things like listening to music, audiobook, radio and computer. Music was fine. I could recognise songs that were familiar to me. The audiobook, I could hear some words but not all. The radio was just noise. I couldn’t make out words. My computer sounded slightly different but I could hear what my screen reader was saying. All of these things were out loud as I didn’t have suitable headphones.

The second day of switch was more exciting for me, as I turned a corner during my second session. The audiologist changed the volume settings and added several programmes of volume for me. This made a huge difference to me and I found that I could hear the audiologist with just my implant, and hold a conversation with her. Again, we went for a wander to get a drink and I started to be able to identify sounds like lift announcements. I also became more aware of environmental sounds- asking my wife what the noise was, saying it sounded like a trolley. In fact it was one of those large commercial wheelie bins, so not far off!
I then had my first rehab appointment. The speech therapist was very keen for me to take things slowly, but laughed when she found out about all my experimenting! She tried a few simple things with me like making sounds and asking me to say whether there were one, two or three of them. She then said some words and I had to say whether they were long or short. She seemed quite impressed when I started to tell her what some of the words were, and said I was showing off! She then showed my wife a category exercise, where I was told a category like flowers, and then had to repeat each word as it was said (rose, daffodil etc). She also suggested that I listen to Victoria read a book while I follow it in Braille.
I went off home, feeling really pleased with my progress, and enjoyed repeating to Victoria all the train announcements, as I heard them! It was a long day but I felt that I had a great result.

The eve of switch on

I’ve been quiet over the last week as there hasn’t really been much to write about… I’ve pretty much just been reading my kindle all the time! 😉 But, 3 weeks after my operation, it will finally be time to switch on my cochlear implant tomorrow at 1:30. It’s fair to say that I’m getting quite nervous now. I’ve tried very hard to keep my expectations in check but it is hard not to let my imagination run away with me about all the things I’ll shortly be hearing. I’ve been chatting to people online who’ve had cochlear implants, including a guy in Australia who had his switch-on yesterday—and is doing amazingly well. I’ve found it really reassuring to discuss everything with people who have been there, done it and got the t-shirt (or the rechargeable battery pack to be more accurate…)

I had the first of my three visits this week to the hospital yesterday afternoon to see the consultant. This was the shortest appointment I think I’ve ever had… after over an hour’s wait we went in to the consulting room, where he had a quick look to see if the scar had healed ok, said everything was ‘perfect’ and away we went!

Tomorrow’s appointment should last a little bit longer than that… well it is scheduled to last for a couple of hours. We then go up again on Friday for a follow-up appointment, so, all-in-all, I’m clocking up the train miles. Chiltern rail should give me a loyalty discount!

We’re planning to make a video of the switch on which I’ll share bits of on the blog. I’ll do my best to update it tomorrow, though with everything else going on, it might be Friday before I next post. For the geeks amongst you who want to know exactly the type of implant I’m getting it is this one:
http://www.advancedbionics.com/uk/en/naida_ci_q70.html

Wish me luck… 

In praise of the Braille display!

One of the things we were most worried about during the 3 plus weeks between my operation and the switch on was how I would keep myself entertained.

Not being able to see means that, for example, I rely on audio output to access my computer via something called a screenreader, (I use JAWS by Freedom Scientific) that literally does what it says on the tin and tells me what is on screen. Using the keyboard and various shortcut keystrokes, I can easily move around the screen, browse the internet, read emails etc. Obviously, if I couldn’t hear very well, then all this was going to be closed off to me. We just resigned ourselves to the fact that I was going to have a very dull few weeks with my only entertainment being provided by the RNIB’s braille library. This was until we heard about Braille Displays. Braille displays provide access to information on a computer screen by electronically raising and lowering different combinations of pins in braille cells. A braille display can show up to 80 characters from the screen and is refreshable—that is, it changes continuously as the user moves the cursor around on the screen, using either the command keys, cursor routing keys, or Windows and screen reader commands. They interact with the screenreading software providing me with access to everything on my computer in braille. Now, the idea of a Braille Display isn’t new to me. I used one at work for 5 years. However, I’d never considered buying one myself as they are very expensive and my hearing at the time was good enough that I could hear what the computer was saying to me.

The thing that got me thinking about getting one for myself was an article in one of the RNIB technology magazines explaining how some Braille displays now had Bluetooth functionality, meaning they could be paired with apple products such as IPhones and Ipads etc. Apple has incorporated a free screenreading programme called ‘voiceover’ in to their products which is how the Braille Display is able to work with them. The article went on to mention the fact that, it was possible to download the free kindle reading app and read your kindle books in braille. This is pretty amazing. Previously I’ve been reliant on the small number of books which are converted to audio books or Braille. This is a very small percentage of the books published each year. With the deterioration in my hearing making audio books less easy for me to access, this limited my reading even more!

I’m a suspicious chap by nature and I needed to be convinced that this was actually as good as it sounds. One of the retailers who sell Braille displays here in the UK (Sight and Sound) offered to come and give me a demonstration and, not to put too fine a point on it, it blue my socks off! Now, for the first time, I could access my computer and phone in Braille! We couldn’t get the credit card out quick enough! I was also lucky that my phone provider was willing to give me a free upgrade to iPhone 5, so that I could make the most of the Braille display.

It comes with a swish carry case which provides good protection on the move.

This has made such a difference since I purchased it, but it has been particularly amazing during my recovery from the operation. I’ve been able to communicate with the outside world as well as reading my kindle books. If I run out of things to blog about, I can always start posting book reviews…

As I mentioned earlier , these things don’t come cheap. Here is a link to the Braille display we brought (other products are available!) http://www.sightandsound.co.uk/shop/products.php?product=Focus-40-Blue-Braille-Display

I was fortunate that we some savings and I know that, sadly, not everybody will have the money for such an expensive item. We did research possible financial support for this but, for adults, none was available unless you could get it through Access to Work if you have a job. Children can often get them as they can help with school work. I think it’s a product that can transform deaf blind people’s lives, and definitely worth saving up for if you are able.
So, now I’m off to read my book! Bye for now. 

Guest post from my wife :)

Steven and I occasionally chat about what amazing innovations and medical progress might be made in the future. I always say that if there was the option to give him sight and the option to restore his hearing, I would choose sight. This is because I would love the safety that would provide him with, and the freedom. Steven strongly disagrees and says that he would always choose hearing. The first time he told me this, I was quite surprised, because to me, it’s his blindness that creates the most challenges. Once he explained it though, I completely understood. He has never known sight, and has learned to manage without it right from the start of his life. His hearing however, he didn’t lose until his mid twenties, and he misses it very much.
He talks fondly about how much he used to enjoy audio books, and how when he was listening to a good one, he would listen to it non-stop for most of the weekend. He also used to enjoy tv series like Blackadder, and listening to football commentary and music (though, as far as I am concerned, he has rather questionable taste. Right Said Fred- noooo!). Even in the time that we have been together, I have seen the amount of time he spends doing these things dwindle to virtually no time at all. He occasionally can manage to hear some football commentary but it’s a strain, and he can’t listen to audiobooks at all now. I think we were both concerned about how much his world was narrowing. It was upsetting for him and I found it a terrible thing to watch at times. Norrie’s is a cruel thing in that way. It was a great relief that we had started on the journey towards a cochlear implant last year, and that we were finally getting somewhere! It was in this sort of limbo period that Steven discovered the wonders of a Braille display/iPhone combo, but that deserves its own dedicated post!

Several people have said over the last couple of years, that they think the fact that I am a primary school teacher is one of the things that makes us work as a couple. I suppose it’s true that I am used to being patient, used to thinking ahead to spot difficulties before they happen. Perhaps I also have more experience of disability and additional needs due to my job, so those things do not faze or worry me. If those things are bonuses in our relationship, then that makes me happy, because I love my job and I love my husband, and it’s nice that the two things are mutually beneficial. I talk about Steven often to my class, and he has visited the school to talk to the children about being blind, using technology, getting around and reading Braille. They are interested in the things that he can do and how he does them. They were fascinated by the idea of him making his own sandwiches in fact one little girl was horrified that I “let” him use a knife, but others were confused as to why he couldn’t drive! He’s something of a celebrity to them and one of the children even gave him their smiley face sticker and told him that he couldn’t take it off.

My hopes for the future are that I will see Steven being able to listen and participate more easily in conversations with one or two people. He’s a sociable person and enjoys chatting, and it’s frustrating for him that he can’t. We do our best in restaurants, and when we’re in large groups, with me repeating what people say to him (he tunes into my voice better) and by using some deaf blind manual signing. It’s tricky though, for me to keep up with the conversation as well as make sure that Steven knows what is going on, so I’m not always able to provide him with as much information as I would like. I also hope to see some of his favourite activities returning over time, especially listening to audiobooks, but I have no illusions that he will be able to hear everything, or that it will be an easy journey. I feel excited for him when I think of switch on and the rehab and just the idea of the possibilities ahead. I tell him that he’s lucky that he has his own personal tutor to help him with his rehab homework. He’s not so sure! He’s worried that I will be something of a hard taskmaster, but it’s all for his own good 😉
I feel very proud of how much my husband has achieved, and how he has faced all the recent challenges. It must be his time now to get something positive back.

Going home after surgery

As mentioned last time, the nursing staff were great and arranged a side room for me to sleep in so that Vicoria could stay. We both had a pretty good night’s sleep—although because of the fluid I’d taken in during the day I did wake up regularly needing the loo. This made me even more grateful that the hospital had made it possible for Victoria to stay as I’d have felt like a real pain buzzing the nurses every couple of hours!

Awake at about 8 for breakfast (the food at the hospital was surprisingly edible) and we were visited by the doctor at about 9.15. He took off the very uncomfortable pressure bandage, had a look at the wound and, to my great relief said I was good to go home. We were surprised that I was being sent off with no bandage at all! The wound looks quite neat and tidy according to my wife:

I’d been warned that the process of getting ready to leave can take a while what with having to collect medication etc but the Guys staff were great and, after a quick wash, I was discharged. And this is where the adventure begins…

Just as we were checking out, the person giving us a lift back to Buckinghamshire texts to say ‘I’m outside in the north wing carpark’ Brilliant we thought, a quick getaway and home in time for lunch. Twas not to be… After wondering around the hospital for ages wondering where the North Wing Car park was, we asked at reception, only to be told that there wasn’t a north car park at Guys. Yes Ladies and Gentlemen, our lift was patiently waiting for us at the wrong hospital. It turns out they were at St Thomas’s about 3 miles away. As they didn’t have a satnav it took nearly 2 hours for them to find Guys, what with all the road closures and the diversions and the roadworks! But we finally made it home just before 3! I think our lift will never trust the directions she is given ever again. Considering she’d been driving around all morning, she was great and took it in good heart but it must have been very frustrating.

 
I was thrilled to be back home and celebrated in fine style with a sleep!

 
For the next couple of days, apart from feeling tired, I was feeling pretty good. Unfortunately this state of affairs wasn’t to continue and I started to feel quite dizzy and nauseous. This is all pretty normal as I understand it, and I just have to wait it out! The pain from the wound has been minimal and I’ve been using over the counter painkillers at the few times when it has been more painful. I have been quite tired and sleepy a lot of the time too.

 
So then, that brings us pretty much up-to-date really. I’m relaxing at home reading and generally being pampered by my lovely wife.  I’ve have tried to persuade her that the consultant advised a diet of baked goods to aid recovery. She’s not convinced but has made me ginger cupcakes and choc chip cookies, so it’s not all bad! My switch-on appointment is on the 19th and 20th September so not that far off really. I’ll write more later if I can think of anything interesting or enlightening to say… so don’t hold your breath! 😉

There’s a thing in my head!

Well, it has taken me a little longer than I’d hoped to feel human enough to update the blog but, as they say, better late than never, and all good things come to those who wait!
So, on Friday morning, my wife and I turned up at Guys hospital for 7 AM as the hospital letter had told us to. The letter had threatened us with a wait that could last until 2 PM before my operation which was indeed an exciting prospect. As it turned out, I was first in! My audiologist had mentioned to me a couple of weeks ago that I was the only one cochlear implant being done that day, so I should expect an early start but we were still a little taken aback to be taken straight through to put on my hospital gown and paper pants!
I then spoke to what felt like every member of medical staff currently in the building as they checked, double checked and triple checked everything. They were extremely efficient and the anaesthetist was particularly reassuring. He’d done his homework, even looking into Norrie’s disease to check whether there was anything he needed to be aware of before putting me under. The checks took about an hour or so, and I was taken down to the theatre about half past 8.
I must admit that during this time I was getting more and more anxious about what was to come. The thing that was worrying me the most was recovery—waking up without being able to see or hear was not something I was looking forward to. While I would still have the hearing aid in my left ear this really wouldn’t help me much. The hospital staff were great, and agreed that Victoria could come down while I had the anaesthetic, and they said they would phone her when I was going into recovery so she could be there when I woke up too. This meant a lot to us, as we were worried about how the staff would communicate with me, when I couldn’t hear or see.

It’s fair to say that recovery was about as much fun as headbutting a wall! Victoria was brought in as soon as I started coming round. I remember feeling very disorientated and that I kept thinking they hadn’t managed to fit the implant. I asked Victoria repeatedly why they hadn’t done it, and she kept telling me that they had. It was a very strange feeling. I was sick several times and because of that, they kept me in recovery for close to 3 hours! Victoria used deaf blind manual signing and the Braille poster to communicate with me while I was confused. Once I had been given some magic medicine and had come round a bit more, she was able to speak into my remaining hearing aid. We had a fantastic nurse who made the whole experience much easier. She really was amazing.
After that I was able to go on to the ward where I was looked after by another amazing nurse called. I was drowsy and kept falling asleep, but other than that I felt okay. In fact I was quite positive that I was fine to get up and walk around and go to the bathroom myself. My nurse insisted that I wasn’t, and sure enough, when I stood up to put on my pyjamas, he was right! I felt very dizzy, which is common with this surgery. My nurse was excellent, always explaining things to me before he did them, and using a clear voice so I could understand.
I had heard all sorts of stories about the gigantic bandage that I would wake up with, but it wasn’t quite what I expected. It was incredibly tight, but not as big as I was expecting. It was the pressure of the bandage that was the only thing that caused me any pain at that point, but ibuprofen took care of that quite well.
The ward sister came and spoke to Victoria while I was asleep and they agreed that it would be much easier all round if Victoria could stay the night to help with communication. Victoria had shown the nurses the Braille poster and they were very impressed and grateful. Even so, I was anxious about being left alone. The ward sister promised to see what she could organise, and sure enough, at 7.30 that evening we were moved to a private room and Victoria was given a bed at the end of mine. They even gave her dinner! They were more than accommodating to my needs.

So there we are, there’s now a thing in my head! Tomorrow I will blog about how the night and going home went.