There really isn’t much of anything major to report for my current CI. It has pretty much stabilized since my one year mapping, and I am not due for another tune up until December. I can hear the full range of pitches now, and music sounds incredible. I was really excited to find out that I could hear very well through headphones as long as the headphones were positioned right over my CI’s microphone.
In the past, I’ve written about the dilemma of getting a second implant. Well, due to recent significant decrease in hearing in my unimplanted ear over the past 6 months, that decision will come sooner rather than later.
I will most likely start the process two years from now. I want to travel next year and wait for the next generation of the MED-EL single unit processor. I never was an early adopter. I hope that I will see the same remarkable results that I have had with the first one.
So, for now, I am getting used to depending on my right ear, and am taking the time to learn ASL simply because it is something I’ve always wanted to learn. I think things will work out in my favor in the long run. We live in an exciting day and age with so many breakthroughs in medical technology.
Lately I’ve been catching up with Switched at Birth, an ABC Family TV show that features several deaf characters. I’m really glad that TV show producers are taking the initiative to create a show that portrays people with disabilities, and describes some of the benefits and hardships deaf people have to face.
The show focuses on two families that have daughters who were switched at birth. The families try to make sense of it all, and create a new life together.
I am almost done with catching up with Season 2, and so far, they have not said anything about cochlear implants except for a couple of episodes in Season 1, where it is described as a “permanent brain implant that will be life altering, and you can’t go back.” Kind of makes it sound like a bad thing. If you don’t like it, don’t wear it. If you can’t handle the bump from the internal implant, get it removed.
I hope that in the upcoming seasons, this show will include characters with cochlear implants because that way, it will provide a more well-rounded view of the deaf population. At the end of the day, when cochlear implant recipients turn off their processor(s), they’re just as deaf as those who don’t use them.
I do like that they have a character with Meniere’s disease. Vertigo and dizziness is a much lesser known side effect of hearing loss.
Overall, it is a good show, and is helpful for providing awareness of issues concerning deafness. It is a TV show, so you can’t expect it to be totally accurate. Looking forward to the new season beginning on June 10th!
It’s been well over a year now, and my CI is continuing to do well. I’m finally hearing the higher pitched sounds such as beeps and musical high notes. I also recently discovered that I hear very well through headphones when they’re positioned close to my processor microphone.
I’m still blown away with the fact that voices, music, and other noises all sound so normal.
There is still a little bit a electronic aspect to it, but that has become progressively less noticeable as time has passed.
As I’ve said before, one of the best things about the CI is that it never stops improving as I put myself in day-to-day hearing situations or get new programs and processor upgrades. Of course there will be bumps in the road—a bad map (software program) or failure with the internal part, but for the most part, those can be fixed. I’ve also noticed an improvement in my own speech, particularly when I wear the CI without my hearing aid in my other ear.
As the CI has improved, the benefits of my hearing aid has lessened greatly. It no longer has to fill in for the higher pitches that the CI couldn’t handle until the past couple of months.
However, two ears are always better than one, especially for conversing in noisy situations and for localization to who is speaking.
I am at the point now where my current hearing aid is maxed out for my loss and it is approaching 5 years old, which is about the time frame hearing aids last with the most benefit. The technology changes so quickly that the hearing aid becomes pretty much obsolete in 3-5 years.
I would love to implant that ear and have bilateral CI hearing. A CI would be a great improvement over what any hearing aid could offer and give the ability to converse and interact with others pretty much as well as someone with normal hearing. However, that depends on how well the ear does. I’m setting the bar pretty high since my right CI performs near normal hearing levels in speech understanding.
It is a tough decision because there are surgery risks, and I would most likely lose what remaining hearing I have left, which is not much, but I still have some speech understanding with the hearing aid. Then of course, there’s insurance approval.
Another thing to consider is research and technology advancements. MED-EL, the company that created my implant, is coming out with a new all-in-one processor soon. This will probably continue to get smaller and thinner, and will likely lead to a fully implantable CI at some point in the future.
So, yes there’s a lot of factors to weigh. It is hard to be stuck in that “middle” area where I could go either way, but it is not a decision to take lightly, that’s for sure.
Many of you may have already heard, but the first-ever bionic eye was approved by the FDA on February 14. The implantable device is a prosthesis for the retina, and is used to restore partial sight for people with Retinitis Pigmentosa. Retinitis Pigmentosa (RP) is a degenerative disease that destroys the retina over a period of time. The device, called Argus II is already approved in Europe and should be available in the US later this year. More on the Argus II can be found in this Wall Street Journal article titled Bionic Eye Becomes a Reality.
Pretty awesome to witness such a giant leap in the cure for blindness. I hope this will be just the beginning of research and progress towards restoring sight for other eye diseases as well. I hope too that there will be more research on restoring sight and hearing with natural tissue, not just through technology.
I am one of those extremely rare cases where I have a completely different condition for each eye. My left eye has optic nerve hypoplasia, or a small, thin optic nerve. My right eye has congenital glaucoma, which means fluid pressure builds up in the eye because it doesn’t drain properly. I’ve been told that the biggest potential to help fix these conditions is stem cells. But, technology is changing so rapidly that who knows what will be around a few years from now.
In lieu of all the crazy weather, Hurricane Sandy, major winter storms, tornadoes, you name it, I thought it’d be a good idea to pass this link along. The Special Needs NOAA Radio provides visual and vibrating alerts to keep the deaf and hard of hearing informed of upcoming hazardous weather conditions. This is especially helpful at night when many deaf and hard of hearing people remove their hearing aids or CI processors.
Here’s the link for more information: http://www.nssl.noaa.gov/users/wood/public_html/NWR/spc-nds-nwr.html
Other good places to keep track of alerts are: Twitter, Facebook, and weather websites. Many emergy departments also offer text alerts sent to your phone.
Here comes some talk about “thinking positive” that is often so hard to do…bear with me.
My cochlear implant journey is far from over and it is continuing to improve. I’ve heard it compared with a fine wine, constantly improving with time. Now I just intend to work on small things here and there, and continue to challenge myself by putting myself in tough hearing situations like noisy restaurants and group discussion settings.
We are all about instant gratification, and we often get it through constant connection to technology via tablets smartphones, etc. One of the biggest misconceptions with the cochlear implant is that is provides instant hearing. Some people are activated and can hear voices and environmental sounds right off the bat. Others, like me, only hear beeps. It is an individual thing, but every CI recipient has to practice to hear better. It took me a year to really start reaping the benefits from my CI. Some of the most rewarding things in life take longer to achieve.
Hearing, like any other body part is often taken for granted. We don’t think about it really until it doesn’t work. Then when it doesn’t work properly, we have to work hard to train it to do whatever duty that it should do automatically. It is an exhausting process, but it is important to celebrate the small milestones along the way, hearing on the phone, hearing music, etc.
And how does this apply to other parts of my life?
It is empowering to know that I can achieve something that looked nearly impossible a year ago. Now, I have the time and resources to apply that energy and passion to other areas such as finding the right job for me, getting more involved in the community, and exploring hobbies that I enjoy in more depth. Writing for this blog is included in that list. I want to travel and explore places I’ve always wanted to go to, learn how to cook better, take a photography class, and work on improving my writing skills, just to name a few.
I was listening to a webinar hosted by American Libraries last week that gave some valuable tips on how to approach the job search. It is still a tough market to get into, and for people with disabilities, additional challenges can make it even harder. But it can be done.
The biggest thing I took from that webinar was: focus on quality rather than quantity. Allow enough time to network and engage in professional development. There are a lot of online networking opportunities, and I’m even seeing more virtual conferences popping up. For those who want to take continuing education classes, there is a website called Coursera that offers FREE online courses from many universities around the world. I write that with one disclaimer: I don’t not know how fully accessible Coursera is. Anyone who uses a screen reader want to take a shot at it and report back?
The opportunities are there. You just have to look for them. It is way too easy to be negative and think about what we can’t do. Turn it around and think about the challenges you’ve faced and how you’ve overcome them, and apply that to other interests or passions you might have. Celebrate the small victories and before long, they’ll lead to the overall bigger goal.
Voice Dream Reader is a text-to-speech app available for iPhone and iPad, and was developed by Voice Dream LLC. It includes support for iPhone 3GS-iPhone 5. The app is a little pricey as far as apps go, $10, but I think the quality of the app more than makes up for it.
When you first download and open Voice Dream Reader, a tutorial gives you a tour of the app, gives instructions on how to get started, and describes the buttons and commands you’ll need to know.
Voice Dream Reader comes with one built in voice, a female voice. There are a number of other voices that can be purchased in the app. There are also multiple languages available. Voice Dream Reader is compatible with VoiceOver, Apple’s built in screen reader.
The app syncs with Dropbox, Instapaper, Pocket, or Bookshare to upload articles and PDF files. Basically an audiobook reader in your pocket. For new CI users, this would be a great way to work on listening skills.
Pride and Prejudice is included in the app. You can customize the background, color, text size, voice speed. As the voice reads the text, a highlighter follows along to help the listener keep track of their place. I really like the clean look and feel of the text. There are no ads to clutter up the reading space.
Voice Dream Reader is helpful for the blind, but it also a great tool for anyone who wants an all-in-one app to hold reading material.
A couple of suggestions: if possible, include a free male voice. It gives the person listening a little more choice. Sometimes, deeper voices might be easier to understand than higher voices. Also, there are a lot of great features in Voice Dream Reader, but they could be streamlined a little better. When I first looked at the list of voices, I only saw the ones for purchase. I had to go back and find the one that was already built in.
You can purchase and download Voice Dream Reader in the Apple appstore at: https://itunes.apple.com/us/app/voice-dream-reader-text-to/id496177674?mt=8
I was looking through Meetup.com groups and there are so many that sound like fun, but not being able to drive limits my choices to what can be accessed by foot or by bus during the daytime. I feel weird showing up to one by myself at night by paratransit or sending out an email to people I don’t know asking for a ride.
What if there was a group specifically for exploring the Triangle area in NC by public transit? It doesn’t have to be a meetup group, just one thrown together by common interest. It could involve tracking down popular destinations for art, dining, sports, historical attractions and more, figuring out the buses that go to those places, and getting a group together to plan an outing.
It could include a buddy program to help promote safety in numbers when traveling by night and spread public transit awareness in the area. Though it might take longer to reach a destination, public transit is a cheaper alternative than gas. The more people who use public transit, the more services and better amenities it can provide.
I would love to visit the NC Museum or Art, see a show at the DPAC in Downtown Durham, or see a concert in downtown Raleigh just to name a few.
Might be a lofty goal, but it doesn’t hurt to toss it out there and see could come of it.
I’m extremely near-sighted. I have to read everything from books to computer screens basically right at my face unless I enlarge it.
When I got my iPhone, then later my iPad, I was so excited because I could zoom in and out really quickly, allowing me to read from a further distance away. I thought this would be a great option to relieve stress from my neck and back and help prevent carpal tunnel.
Turns out, both lead to other issues. I still have to hold both up to see them. My eyes get tired a lot more quickly because I spend so much time squinting at my phone’s small screen.
iPads aren’t designed to be held for an extended period of time. Often, I’d hold it in one hand while browsing with the other. They are pretty heavy. That led to arm and neck strain—even caused bruises in the space between my thumb and forefinger from letting the iPad rest there.
It is tough finding a happy medium that limits the impact that using this type of technology over an extended period of time can have on the body.
In the case of the computer, keep the screen at a reasonable distance, then use an onscreen magnifier. I found that by moving my monitor up and away from me, it put a lot less strain on my back and eyes.
ZoomText is the best one, but it is expensive. The built-in Windows magnifier is okay—better than nothing.
Zoom is the built-in magnifier for the Mac, and it works a lot better than the Windows versions.
Set your iPad on a pillow or lapboard. Even better, prop it on the table and add a couple of books under it to bring it up higher.
I love my phone because it is quite handy for so many different things. But it really isn’t supposed to serve as a full blown computer. My goal is to try to use my iPad more when I’m at home and only use my phone when I have to look stuff up while out and about. We’ll see what happens. Habits like that are hard to break!