Emotional breakfast at the Vera/Nigel house this morning. The first episode of the film was released at 7am so we watched it over muesli (me) and porridge (him). We’d seen it once before, when we went to Innsbruck, Medel’s HQ, to approve the various chapters; we found it moving then and today was no different, looking back to when life was quite, quite different. Continue reading
One of the things people don’t understand about hearing loss is noise. They think people who can’t hear live in a quiet world. There’s a logic to that and indeed, before the invention of hearing aids, they’d have been right. Without the things that sit on our ears the world IS a very quiet place.
But with hearing aids……WOAH……
Adjusted to ramp up the sounds of speech a hearing aid will, unfortunately, ramp up everything else within the frequency ranges concerned. Continue reading
Readers of this blog with long memories may remember me being asked by staff at the Cochlear Implant Centre at Bradford Royal Infirmary, over a year ago, if I would be willing to be the subject of a film about the implant process. I said yes and, twelve months ago last week, first met Henrique and Sebastian from Med-El, the company who manufacture my particular type of implant and who had decided to make the film.
There are lots of short films (five minutes or so) available about implants. I watched several in the run up to the operation and very helpful they were too. But I’m not aware of any other film following one person’s story right from the beginning (being offered the implant), through to the stay in hospital, then switch-on day, then the various stages in the weeks and months that follow. I’m really hoping that having something available that shows the whole process will convince more people of the benefits of an implant and, in the UK, possibly even help in the campaign to make the eligibility criteria less strict.
The big news today is that a preview is available. You can watch it here. Med-El are releasing the film in various “chapters” at two weekly intervals, starting with “before the operation” on 23 October. They return to film the last episode (“one year on”) next month. The plan then is to release the full film (all the chapters!) sometime in early-ish 2019. I’ll post when the various sections are available, or you can sign up to get them via the Med-El website.
Hope you like it. HUGE thanks from me to Med-El and especially to Henrique and Sebastian – for the film but also for being there at all the crucial points, making me laugh and buoying me up.
(PS For subtitles click on the subtitles icon (CC) at the bottom of the screen).
Image copyright: Med-El. A scene from their quality control laboratory.
“Yes!” I hear you all shouting. “Yes, of course it is”. But sometimes I wonder whether people in the outside world have their doubts, or at least don’t think it’s quite so serious a disability as some others.
I’m not talking here about people in the Deaf community (capital D), who have been deaf since birth or childhood and use British Sign Language. They would sometimes say that their deafness is not a disability – they just speak a different language and otherwise can do everything a hearing person can. I can understand and applaud that stance but I don’t share it. Being an adult onset deaf person feels very different. Having a sense and then losing it is a different kettle of fish to never having had it at all, which is why I suspect that most of the followers of this blog (those of us who are adult-onset lower-case deaf) have no problems with the term disability. We’ve lost the ability to do something that we used to be able to do.
Moving on from that issue, though, what sometimes gives me pause for thought is when the outside world seems to have trouble accepting deafness as a disability. Continue reading
Time to wind up the cochlear implant posts, or at least time to wind up the regular reports on progress. I’ve just gone past the six month milestone and been effectively discharged (no more appointments with the audiologist for another year, unless something unexpected happens). Time to move on.
The six month appointment was quite relaxed. I was happy with the last programme I’d been given, so no changes there. My hearing thresholds were tested again (the quietest sounds I can hear). My ability to hear sounds at one of the frequencies is still below the theoretically optimal point. Research shows that cochlear implant users who can hear sounds quieter than 35 decibels (25 to 35 decibels being the ideal range) tend to do better at speech comprehension, so the audiologist is aiming to boost the signal from the electrodes in the implant until that point is reached for each frequency. In my case, however, boosting that one frequency any more than it already is results in worse speech comprehension, rather than better, so we mutually decided to let things stay as they were. I am hearing just fine in so many situations; let’s leave it at that.
Here’s the point I’ve reached, on an audiogram, before and after implant. Continue reading
I last talked about music not long after I had attended the session devoted to it at the Cochlear Implant Centre. As you might remember, I’d gone along with an open mind but also knowing that music wasn’t that important to me so I probably wasn’t going to be devoting myself to long hours of listening-to-music practice. What’s happened since?
I was right. Enthused as I was by the improvement in listening to my favourite Bridget St John CD in the car on the way home from the hospital, attempts at practicing petered out. Continue reading
Do you remember, back in January, Deb writing a guest post for us, about her stapedectomy operation? If you missed it you can read it here. Deb promised us an update on her progress since then and here she is…….
“Well, here I am back again finally, a little longer than the few weeks promised, to conclude my stapedectomy journey. Somehow a whole five months have rushed past. How did that happen?
When I finished my last piece I was 6 weeks post-op and about to start my new job. So what’s happened and how am I feeling now? The last question is very simple to answer – great! And with much improved hearing – though it hasn’t been all plain sailing. Continue reading
Yes, of course I am. My medical ID card says it clearly. “The owner of this card is profoundly deaf, but can experience hearing sensations with the help of the implant system”.
I also signed up to “yes, I know I will still be deaf” as one of the expectation management aspects of the information programme at the Cochlear Implant Centre before the operation. Quite rightly, staff needed to be sure that we potential implantees understood that this was no miracle operation. There would be a long process of rehabilitation and brain training, and we wouldn’t ever hear like hearing people do.
But what does “being deaf” mean? Continue reading
Sometimes, with cochlear implants, there are side effects. You are warned about them before the operation and they form part of the consent process – “yes, I am aware of the following possible side effects……” Frankly, I’d have signed anything at that point, so desperate was I to get an implant. Well, almost anything…….
In my case there have been a few small things.
The area around my ear and my upper jaw were quite bruised after the op, which made chewing on that side of my mouth tricky to begin with and a big, luxurious yawn quite painful. This lasted for a good few weeks, but gradually improved and has now gone. Continue reading
Maybe problem is too strong a word. Hitch maybe? Glitch perhaps???
In the spirit of full transparency it is time to report on a glitch.
In late March I had a programming problem. What goes on at programming (or mapping) sessions at the Implant Centre is that an audiologist first tests your range of hearing for each electrode (the quietest sound you can hear at that frequency and the loudest that is comfortable).
Testing for the quietest sound is much like any other hearing test. You are given a buzzer which you press when you detect the tiniest, tiniest glimmer of a sound, somehow distinguishing it from the tinnitus. You know the routine….feverish concentration, furrowed brow…….. Continue reading
More than a bit deaf 