Face me, I read lips

This weeks Photo Hunt theme is surprise.  I took this picture of a traditional Mexican dress swirl dance during a fiesta a few years ago.   When I got back to my hotel room I was surprised to see that my lens had caught a dancer fully exposed during a large swirl.  I had never noticed the knee bandage or her pretty panties during the show.

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If you are deaf or Deaf or hard-of-hearing and live in the Seattle area, most likely you have noticed all the newly accessible events around town.  You’ll find captioned sports announcements, subtitled musicals, plays, and lectures, as well as ASL performances.   Additionally the Washington State ferry system will begin captioning pertinent announcements soon.

Washington state has one of the most liberally interpreted accessibility laws in the U.S., and one man John Waldo, has made it his goal to see that Seattle becomes the most accessible city for the d/Deaf and HH in the country.  I would like to call your attention to his blog that details all the latest changes on the access front at hearinglosslaw.com  Many organizations, like the Mariners and Benaroya Hall, haven’t had time to update their websites with the new information yet, so few people know about it.

As the Mariners season wraps up, you will be able to access announcements at the game with a hand held gaming device developed by Nintendo–owner of the Mariners.  Instead of using an extra reader board for captions that might have taken up valuable advertising space, the Mariners in partnership with Nintendo came up with this creative solution to access.   The device is available at a Nintendo kiosk near home plate.  Similarly the Seattle Sounders and Seahawks offer hand held devices for captioning stadium announcments–good news for my husband, an avid fan and season ticket holder, who is moderately hard-of-hearing.  Sometime this fall I hope to attend a game and will try to take pictures of the device so you can all see how it works.

In the past year, we have enjoyed two wonderful captioned musicals at the Fifth Avenue Theater.  This is something I only dreamed of doing in the past.   In the coming year,  I’ll be able to attend plays and lectures at the Seattle Rep, the Paramount, and Benaroya Hall, as well.  It seems like the world has suddenly opened up!

This article wouldn’t be complete if I did not mention that ALL Seattle Opera performances are subtitled and have been since the early 1980s.

Accessibility options are not well advertised.  In most instances I’ve had to search around on websites to find out when and where captioned events were held.  Four websites– the Mariners, Sounders, Seattle Opear, and Benaroya Hall do not have any information about it at all on their websites.  You may have to call for more information and updates.  Be sure to do that, and let them know later how happy you are with the services they provide.

It may seem like a small step when an entertainment organization offers just one accessible performance among many, or when only some of the game announcements are captioned, but it is a step in the right direction.  With positive feedback, they will soon realize the many benefits of offering services to all.

This week’s Photo Hunt theme is ripples, and once again I found a great example that fit the theme from my collection of Chihuly pics, taken last Nov. at the Phoenix Botanical Gardens.

Ripples of glass at the Chihuly Exhibit

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Yesterday I opened up my email to discover that my health insurance company had denied my pre-authorization for the hybrid implant.  My first reaction was to let it go. When it comes to these kinds of things, too often I tend to think that if it was meant to be then it would all fall together smoothly.  But so many people convinced me to appeal.  Evidently this is the norm all too often.

So here I am fighting for something for once.  The hybrid isn’t ‘experimental’ even though it hasn’t been approved by the FDA.  It has a Class B designation which means it is simply the next generation of already proven technology that has been on the market for over twenty years.

I am very lucky to have many friends who have cochlear implants, and know the ropes.  The first step is to contact the company that makes the product you are interested in.  In my case that would be Cochlear.   They have staff who will counsel you how to deal with insurance companies.  So far I’ve been impressed.  I emailed Cochlear after five pm yesterday, and someone got back to me before noon today.

If you are in the same boat as me, here are four websites you need to know about.  Whether you are fighting for your first implant, or your second implant, a child’s implant, or a new generation implant like the hybrid or the baha, these websites will helpget what you need.

Cochlear Insurance Support

Advanced Bionics Reimbursement Services

Med-El Reimbursement Services

Let Them Hear

The game plan is APPEAL.

This week’s Photo Hunt theme is artificial.  Here, artificial ‘rocks’  brighten a creek bed at the Chihuly Exhibit in Phoenix Botanical Gardens

Chihuly Exhibit

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Hearing thresholds superimposed onto the Iowa Nucleus Hybrid Eligibility audiogram

Do you recognize this pattern?  Does it look like your hearing threshold levels?  If so, you might be eligible for a Cochlear Hybrid Implant in the near future.

Up until now those of us with a steep ski slope hearing losses have not had many options.  Hearing aids may prove ineffective, but we don’t qualify for a cochlear implant.  We’re between a rock and hard place,  my mama would say.

Over the past several years, Cochlear and Med-el have been testing a new type of implant that addresses this problem.  Since ski slope hearing loss is the most common type of loss among the late-deafened, the hybrid could be the best answer for millions of people in the future.

You might recall that I qualified as a test subject for the hybrid back in November of 2007.  At the time I considered it too risky.  It was experimental, and quite frankly I just didn’t understand how it worked.  I wasn’t ready.  Now however, I am still in the same boat.  I cannot hear well enough at work or in most social situations to enjoy doing the things I used to enjoy.  I have tried to change my lifestyle by learning American Sign Language.  I am lucky to work in an environment where the folks I work with are understanding and supportive.  Still, I came to the realization that hearing loss is taking a toll on my quality of life.  I am stressed out all the time, and that is affecting my health, as well as my ability to do what I do best.

As you all know I tried new hearing aids recently with the hope that I would hear better.  And I DO hear better.  But not well enough.  My audiologist recommended another evaluation for a cochlear implant.  I did not qualify once again.  But I’m close.  Very close.  With the progression of my hearing loss it’s only a matter of time that I could get a cochlear implant.  Still, no one knows the answer to how long I’ll have to wait.  It could be six months or six years.   Again it was suggested I might try the hybrid, which is still in testing phase two.

But the good news the hybrid has been improved in the past two years.  While it doesn’t yet have FDA approval, the rumor is it could come through as soon as this fall or early next year.  Medicare has started covering it, because it has proven safe and effective for those of us with steep ski-slope hearing loss.   Results have been quite good, and it is likely I’ll be able to hear speech at near normal levels once implanted with the hybrid.  Even better, my low tones will be preserved so that I will continue to hear music  acoustically rather than electronically.  This sounds like the best of both worlds.

I have decided to take the leap.  My surgery date is Sept 21st.

For those of you interested in the hybrid, read all about it here.  There is a narrow window of eligibility.  So far I’ve had six hours of testing and am scheduled for seven more hours of in-depth testing for speech discrimination, which I’ve already failed (or passed, however you want to look at it ) I am confident this is the right answer for me and many others.

I finally get Kelly Clarkson’s song.  She must have tried a Naida.Beautiful– yes?

Let me just list my complaints after wearing them three days.

1. No on/off switch, which is incredibly inconvenient for people with profound hearing loss.  We all know how grating some sounds can be, especially if we haven’t heard these sounds for years.  There are times I just want to turn off momentarily, but I can’t unless I take the entire aid off, and open the battery compartment.  I hate that!
2. The battery itself is difficult to install.  Every hearing aid I have ever owned over the past 28 years had only ONE way the battery would go in.  If you tried to stick it in the wrong way, the door wouldn’t close.  With this aid, the door not only closes, but the battery gets stuck the wrong way so that it’s extremely difficult to remove in order to place it in correctly.
3. Worse– when the battery is in its compartment correctly, it falls out if you open the door (to turn the aid off), so that you must put the battery back in the aid every morning.  If you’re in a hurry and you happen to place it in the wrong way, you’re going to have a very bad morning.
4. The ‘whistle-block” feature doesn’t work well.  I’m getting more feedback than ever.  I get feedback when I move my head.  I have to walk around holding my head perfectly still all the time.
5. The noise block feature blocks noise that isn’t there, and doesn’t block noise that you want to have blocked.  My old Siemens, which is now nine years old has a much better system with its directional microphone, and I could turn it on or off at will.
6. I’m not sure that the aid is automatically switching to t-coil when I pick up the phone.  I am not getting a program switch tone.  I have to manually switch it every time.  The good news is that I CAN hear on the phone with it, but I’m disappointed in the automatic telecoil detector thingie, since I paid big bucks for this aid.  I’m pretty sure the problem isn’t with my phone since it’s an ADA phone I bought specially from the Hearing, Speech and Deafness center.
7. The “wind block” feature doesn’t automatically block wind noises when I’m in the car, and there’s no manual switch to make it kick in.
8. The aid is switching programs on me for no reason.  I’m constantly resetting it.
9. And one final comment– These are supposed to be water proof.  So I asked my audi if I could wear them in an aqua aerobics class.  We don’t swim.  We don’t put our heads underwater. I explained.  “No!” he said.  “They’re not THAT waterproof.”  (sigh)
10. AND–while I’m at it– when we pay this kind of money for an aid, shouldn’t we get little plastic swatches so we can SEE what these aids will look like on?  It’s really hard to tell if it’s silver or white, yellow or beige, red or raspberry on a computer screen.   I mean, c’mon my porcelain crowns cost way less money, yet the dentist spends a good half-hour holding up porcelain swatches to my teeth to make sure they’re a color I can live with.  We’re talking plastic here.  I’m going to wear these things for the next five years at least, and it would be nice if I could see exactly what I’m getting. 

I thought maybe it was just me.  I have been thinking maybe I got a bad pair.  Then I found this blog.  Evidently the Naida has a bad track record.

I can hear better than I’ve heard in years with the Naidas, but for $6000.00 I expected fewer kinks.  They are pretty though.

This week’s photo hunt theme is “low.”  I chose a picture of low tide at Ledbetter State Park in Washington.  This was taken a couple years ago while out bird watching. 

Ledbetter State Park, Washingon

Here’s another angle.

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My old hearing aid broke last Thursday night, so I made an appointment right away.  I thought I was getting the Epoqs, but instead he fixed my old aid.  So I had to wait until today.  I had decided to try both the Naida and the Epoqs.  My audie ordered both, and when I went to get my right hearing aid fixed on Monday, he asked which I would like to try first, because he wanted to have them ready for Thursday (today).  I said I wanted to try the Naidas first.

When I got there this morning, he had the EPOQS waiting on the counter instead.  Abe, the deaf audiolgy intern, listens better than anyone else in the office. He switched the Epoqs out for the Naidas, then began programming right away.  But when he took them out of the box, I was so disappointed.  BEIGE.  I don’t know how many times I told my regular audie I didn’t want beige.  He’s convinced I need to wear beige because my hair is blond.

No offense to anyone here, but beige looks like you’re ashamed to

Naida

wear hearing aids.  If you have short hair they show no matter what color you get.   Beige only looks like you’re trying to cover up the fact you wear hearing aids, and you aren’t successful.  I much prefer having a color.  When you wear colored aids, it’s like saying, “Yeah- I wear hearing aids. . .and so what?”  which is where I’m at with my aids these days. I am not ashamed. So I told my audi that I wanted zebra stripes.   Though he agreed to order a color, he said the zebra stripes were for kids.  I hate it when non-deaf people say things like that.  What do they know about it?  I must be a kid at heart because I like zebra.  But really after thinking about it I came to the conclusion that since the stripes are only on the sides, not the back of the aid, no one will see them.  All they will see is white and that’s so blah.  I wish they had raspberry or metalic green.  I might go with blue instead.

Light Blue Naida

It’s hard to decide between light blue or dark blue.  I’m thinking the light will look best with my skin tone.  But the dark blue  may be more versatile since it won’t clash with red.  I wear a lot of red and black.

Dark Blue Naida

I wish you could get little plastic samples to hold up behind your ear, so you could see how the aids will look back there. Is that too much to ask when paying $6000.00 for a pair of aids?  I’m going to be wearing them every single day for the next several years.  I really want a fun color that will go with everything.   Ideally I think they should come with removeable cases so you can match your hearing aids to your clothing and accessories.  What I need is a girl friend to help pick out a hearing aid color.  Girl friends are THE BEST for stuff like this.

Other than the color, I’ve been happy with these aids today.  I have been hearing things I forgot about.  My own voice sounds completely different.  It’s very strange to hear these things I’d forgotten about.

This weeks PhotoHunt theme is entertainment.  I don’t think there’s anything more entertaining than seeing your kid on stage.  This picture was taken in 2006, when my son was still in high school.  He took ASL because his mom has been going deaf his entire life.

In this picture, his class is signing to a song, though I can’t remember which song they signed to now.  I loved these concerts so much!!  Every year all the ASL classes put on a show and invite hh/deaf people in the community to attend.  It’s such a fun night.  The kids choose the songs, make the stage back drop, bring props and choreograph the performances.   It’s so great to see so many young people who know a little ASL.  I often run into former students working in restaurants and at Starbucks around town who can sign a little– thanks to  this program and others like it.  My son is not fluent in sign.  His first language is English, as is mine, but he can sign enough to help clarify what he’s saying with his mouth that it helps our communications quite a bit.  He is the fifth from the left in the top row– black shirt   I am so proud of the kind and caring young man he has turned out to be.

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