CNI

Sent an email to the CNI in Colorado. Hopefully I'll hear back from them about their cochlear implant assistance program and if it's something I really should consider. We'll see how things go.

no luck

No luck with the Let Them Hear Foundation. I guess they only help those who have problems with gettung their insurance to pay for the implant. Me, I have no insurance at all whatsoever. I would have copied and pasted LTHF's response, but Yahoo's already cleaned out my trash mail.

Looks like the CNI CI Assistance program is my best bet, I just need to find funding to pay the hospital/surgery/doctor fees. I'll have to ask Rocky Mountain CI Center for approximate costs of such fees.

WSD archive

The Wyoming School for the Deaf archive website has a new link! http://www.wyomingdeaf.com although it is still under MAJOR construction. Got a lot of work to do, but it'll be worth it.

let's save WSD!

There is still a good chance the Wyoming School for the Deaf building can be SAVED! The local school district are wanting to tear down good buildings for no good reason at all, except maybe to waste money. The WSD building is still in excellent shape, and is frequently used on a daily basis. There are plenty of office spaces and there is also the library and resource center for the deaf which is VERY well used not only locally, but throughout the entire state of Wyoming. The school district wants to tear down and rebuild Pineview Elementary, which is understandable as Pineview has been condemned. But there is absolutely no need for them to take down the Deaf School building too (which is conjoined to Pineview). If they tear down the WSD building, it'll probably be replaced with a parking lot. We can't let that happen! So let's take action against the School District and fight them to keep the building up.


You can send letters to
Casper Star Tribune
Letters Editor
170 Star Lane
Casper, WY 82609

or email your letters to the editor at: daniel.sandoval@trib.com

If you want to know more information about the situation, read the article that I wrote for the Casper Star Tribune: Deaf alumni saddened by school's fate


In June of 2007 during the WSD's 50th anniversary and reunion, it was the alumni's wish to have a small archives museum to be created in this building, as there would be historical meaning. If the archives museum is placed in another building (should the library/resource center be moved), there wouldn't be the historical connection. Let's achieve the alumni's dream!

what to do hmm

Am still trying to find options. Contacted the local Department of Family Services about Medicaid, from my description to them, they don't believe I'll be eligible for Medicaid. But they told me to try contacting the Resource Center as they usually are able to help people find different options and whatnot. So I'll try this resource center and see what they can do. I don't have a number for them, but the Medicaid office did give me their location. I don't how how long this office is open during the day, but after work I'll see if I can find the center, and go from there.

La de dah. This is nuts, trying to find coverage of some sort. But I'm still working on it!

I'm also on the search for a new webspace host for my Deaf School website. I have given up all hope on 5gbfree.com ever functioning again. The new owner of 5gbfree.com hasn't done a single thing in regards to fixing problems, and this has been going on since September. I'm tired of waiting around and not hearing any words or updates of what is going on with the host, so I'll just find a new one. I really do want to get the archives website up and going, but let's find a reliable host first.

new CI surgery method?

New, less-invasive approach eases cochlear implant surgery
November 9, 2007
by Nicole Majoras
Treating deafness might just get a little easier.
Robert Labadie, M.D., Ph.D., and his colleagues at Vanderbilt University Medical Center have come up with an image-guided, minimally invasive approach to cochlear implant surgery they believe will make it faster, less invasive and more precise.
This spring they received a $3 million, four-year grant from the National Institute on Deafness and Other Communication Disorders to test their
hypothesis.
“We envision such a minimally invasive technique to become the LASIK procedure of the ear,” said Labadie, associate professor of Otolaryngology and Biomedical Engineering.
In order to accurately implant an electrode in the cochlea without damaging the critical facial nerve, surgeons currently have to excavate a large section of bone from the lateral skull base, a process that takes approximately two hours to complete in the operating room with patients under general anesthesia.
Labadie said that with his group's software and frame design, surgeons will be able to plan a specific trajectory by putting anchors into the skull, and then having a customized frame built to guide a drill along a safe path from the lateral skull base to the cochlea.
This process may reduce operating time from hours to minutes, and could eliminate the need for general anesthesia, he said. Labadie's partner in the Vanderbilt Department of Electrical Engineering and Computer Science, J. Michael Fitzpatrick, Ph.D., has written software that automatically identifies the anchor positions.
Others in the department, Benoit Dawant, Ph.D., and Rui Li, have developed planning software that allows the surgeon to identify an entry point in the skull, and then verify a path to the cochlea that does not injure any vital anatomy such as the facial nerve. To do this, the surgeon can “fly” down the proposed trajectory in the CT scan, looking at adjacent structures as they pass by.
Jack Noble, a former Vanderbilt undergrad now pursuing his Ph.D. here, has automated the planning software using an atlas-based method developed by Dawant for neurosurgical applications. The surgeon need only verify that this automated path is safe before ordering the frame. Information is sent electronically to a manufacturing company, which makes the frame using rapid-prototyping with a turnaround time of 48 hours.
After the frameis mounted to anchors in the patient's skull, a drill is inserted through it and guided down the planned trajectory.
Jason Mitchell, a machinist in the Vanderbilt Department of Mechanical Engineering, is co-inventor of another innovation, the Posi-Seat anchor driver, which allows surgeons to place bone-implanted anchors more securely.
During the first two years of the grant, the team will be validating the accuracy of drill guidance on patients who are undergoing the traditional wide-field surgery. Wendy Lipscomb is the research nurse coordinator.
Three other centers — the University of
North Carolina at Chapel Hill, University of Texas Southwestern, and Case Western Reserve University — will join the study this fall. The researchers anticipate performing the first percutaneous cochlear implant surgery in April 2009.
Labadie estimates that the time required for this new procedure will initially be on the order of one hour, and that it will ultimately be performed outside the operating room.
“Currently the patient needs to recover for two to three weeks before we can activate the device, but with our design the patient could activate the device the same day,” Labadie said.

I thought this was a very interesting read. Hmm! And yeah I know the formatting looks goofy here, I dunno what I did ha. Oh well.

insurance update

Well, after talking with Human Resource last week, it's possible I won't be able to get any of the benefits as apparently the prepress job is still temporary. Come on now, exactly how long is "temporary" now? Last time I was told the job would be temporary, it would last through October and that was it.... Well I'm still working in prepress. Now for how much longer? And they're not sure if they'll have anything I could work on AFTER prepress, to keep my 30+ hours a week, since I can't use the phone and all.

I did call BlueCross BlueShield to get a quote from them. If I were to get insurance through them for cochlear implant coverage, I'd have to get insurance with the health pool... whatever, as the implant coverage would come from the pool thing... and that insurance is pretty pricy. I'll look into other insurances, but honestly, the cheapest way I can get insurance is if I get it through employment. No such luck right now.

So, I am hoping my mom's $5 million lottery thing is actually real and she gets that money. She said if she had that money, she would get her lasik eye surgery, she would pay for my cochlear implant, get her business paid off, help out some people with some of that money. Yeah. Her lawyer is looking into this thing. My mom did some research, found out it would be coming from a REAL bank and all. And when contacting them via email (they haven't asked for any private info such as bank accounts or anything like that), they said they would be more than happy to send a certified letter to her lawyer. So hopefully this deal is real, but who knows. We both know there are a lot of scams online and to be leery of them. She's really hopeful this thing is real.

Oh, life just sucks at times. Can't apply for SSI, I'm making more money than is the limit per month. Can't ask DVR for help, they have been of NO help whatsoever in the last few years, and believe me, I've tried. I have asked them for help with insurance and whatnot, and they haven't done a single thing, so forget them. What else can I possibly do, beside continue looking into different insurance companies? Hm. I know I could try fundraisers and what not, but $105,000 is a LOT of money to try to raise. Hm.

an update

It's been a while since I've posted, now hasn't it. October has basically been a pretty busy month for me. Early October, I flew out to Columbia, SC to stay with a friend for a few nights. We both attended the Hanson concert that was in Charlotte, NC, on the 11th, which was a blast. I took my hearing aid off again for this concert. I'm telling you, when I leave the hearing aid on, everything is just pure noise, I can't tell what is what! But with the hearing aid off, I was able to hear the music well enough. It was a bit quiet for me, but it was still enjoyable. And my friend was able to tell me what song Hanson was playing when I didn't recognize it. It was pretty fun.

After I got back from South Carolina, of course, I had to get my wisdom teeth out. Now that was not a pleasant experience at all, but I got through it and am still slowly healing up today. Also have been keeping busy with work. We have new press machines, so I had to be trained on how to work the machines and on the new system we are to use for printing the newspaper pages. No more negatives! How nice is that?

And now... insurance stuff. Open enrollment for insurance for Lee Enterprises stared last week. I still have no enrolled yet, as I am still trying to find out more information and details. There was a meeting about the benefits that are provided, and I did attend it, but I was just even more confused than ever. So I left the meeting early. Am still awaiting a response from Human Resource with answers to my questions. Also, I did get a hold of, uh, was it WellMark? Lemme go pull up my email. I might as well paste it into this blog post, for progress purpose in terms of the cochlear implant process.

Thank you for your email inquiry. We appreciate you contacting us via the Internet to resolve your questions and concerns.

We have researched your inquiry that is attached to this email reply and have made the following determination:

Please be advised prior approval is recommended for cochlear implants. The medical policy can be found at http://www.wellmark.com/e_business/provider/medical_policies/policies/cochlear_implants.htm
If approved, deductible would apply and once that is met, the coinsurance percentage to the out of pocket maximum. Then Wellmark would pay at 100% of allowed charges. Best benefits if provided by in network providers. If you would like more specifics please advise which plan you are considering, by email, or by tty 888-781-4262.

I got the wellmark.com link through Lee Enterprise's employees website, and contacted them from there. There is also Blue Cross Blue Shield, which I have heard good things about in regards to covering the implant, and that is the actual insurance company Lee uses I guess. I don't know, I'm still a bit confused but am working on getting my confusion straightened out.

I'm getting there, very slowly. The plans/benefits will start on Jan. 1, 2008 and from there, hopefully I can get a move on. The insurance would cover most of the implant, but I do have to pay a copay. Once I figure out what that copay is, then I could work on getting the funding for that. But first, get my confusion straightened out, enroll, GET the insurance... then get the CT scan done and make an appointment with the surgeon so he can look at the scan and we'll go from there.

Deaf alumni saddened by school's fate

Deaf alumni saddened by school's fate

By MEGHAN WATT
Star-Tribune staff writer
Note: Meghan Watt attended the Wyoming School for the Deaf from 1991 to 1998. She graduated from Kelly Walsh High School in 2004 and is a community news clerk for the Star-Tribune.

The Wyoming School for the Deaf building in Casper will be torn down as part of the Natrona County School District's plans to build a new elementary school to replace Pineview Elementary.

Deputy State Superintendent of Public Instruction Joe Simpson announced the news Thursday in Cheyenne. He told a small group of deaf community members "both buildings have lived out their life expectancy" and that a new school is necessary, as Pineview is beyond repairs. The Natrona County School District owns the land on which the School for the Deaf was built, and the district wants to use that space for the new school.

Some deaf alumni are upset or shocked over the plans, as the deaf school was important in their education and lives.

Kathleen Holmes, one of the first students of the deaf school, told the Star-Tribune in an e-mail message, "It's indeed sad that all the memories and the historical site of the Wyoming School for the Deaf will be wiped out when it's torn down! We held our 50th Anniversary Reunion at WSD last summer."

Catherine Burns of Casper, who also was a student, said, "I think Casper should not tear down the building because it represents us (the deaf students/community) and our memories. Every time I go to WSD, it brings me back to the old time to keep memories alive. Once it is down torn, people will think it never existed."

Josie Wedlock, a former student who now lives in Fort Collins, mentioned that she was shocked when she heard of the news. "I really don't want them to take down the school. I'm just hurt about this. This school meant a lot to me."

While the deaf school building will be torn down, the Services for the Visually Impaired and the Outreach for the Deaf Library will still be available at another location, Simpson said. An archive or a small museum will be added on to the library and resource center for those who want to share their memories.

The design of the original portion of the Wyoming School for the Deaf building is unique. Mark Bennett, a former school for the deaf student and a member of the Deaf Association of Wyoming expressed that he would like to see the new location for the library to have the same "roundness" that the deaf school has.

He also would like to see a meeting room of some sort within the new location, but that will depend on how much space is provided for the library and archive.

Before the School for the Deaf was built, deaf students were educated in temporary classrooms at Casper College and East Junior High. In 1959, a house across the street from Pineview Elementary was purchased and used as a school for the deaf. By 1961, the state legislature appropriated $250,000 so that a more permanent school for the deaf building could be built.

The deaf school was built adjacent to Pineview Elementary so deaf students could be integrated with hearing students whenever possible. It was on January 3, 1963, when the staff and students moved into the new building. The School for the Deaf was closed the summer of 2000, as only one student was enrolled and other deaf and hard of hearing students were mainstreamed into public schools with services.

The original building continued to be used as a library and resource center for the deaf since the closing.

Once the new elementary school has been built, a memorial bench, plaque or other type of recognition will be created and placed on the location where the deaf school building stood. Janine Cole, an outreach consultant for the Wyoming Department of Education's services for the deaf and hard of hearing, thinks it is important that a memorial is placed on the property to honor the School for the Deaf.

Simpson is encouraging the School for the Deaf alumni and the deaf community to get creative and share ideas of what the memorial should be as their ideas will be taken into consideration. The state will try to organize a committee for the alumni to discuss memorial ideas.

An archives Web site for the deaf school is in the works. Until then, Cole will see that a Web site is added to the State Department of Education's website. This site will be updated as information becomes available, and will include a way for people to express opinions about the demolition plans.

Casper Star-Tribune

article

Have most of the article written up, and the editor is happy with it so far too (took me a couple of hours before I could actually start writing though, as I was stuck). Am awaiting more responses via email about the deaf school being torn down. One says it's sad they're tearing down the building, and another was angry and wants to protest. I myself am not happy, not exactly ANGRY but not haooy either. But I can understand the school district wanting their land back. Hopefully I'll have more responses by tomorrow so I can use some of them in the article, just so the community knows how the deaf community or alumni feel about this situation. That school was extremely important to a lot of us, we all have memories in that building, the school was a big part in making us out to be who we are today.

I've also gotten the guestbook up on my WSD website so visitors can leave comments about the school being torn down. But the rest of the website is not up, and probably won't be for who knows how long. The website is http://wyodeaf.5gbfree.com for anyone that may be interested.

Tearing it down...

Well... my friend Jo and I drove down to Cheyenne to attend a state
department of education meeting about Pineview Elementary and the
Wyoming School for the Deaf buildings being torn down. This is not the
state's doing, but rather, Natrona County School District's. It is the
school district that wants to demolish the buildings, and build a new
elementary school to replace the old Pineview. The State of Wyoming owns
the school for the deaf building, but the district owns the land on
which the building is. And since Pineview is so old, they want to
replace it with a new and upgraded building. So now, where is the
library and resource center going to move to? No one knows yet. All I
can say is, I'm not happy the deaf school is going to be demolished. But
what can we do, really?

It is thanks to that deaf school that I am where I am. If it hadn't been
for that school and for the staff that worked there, I wouldn't be who I
am today. The deaf school has been the best thing that's ever happened
to me. It was where I started talking again with my voice, and learning
sign language and all. They improved my speech, taught me how to
socialize with others, how to care for my hearing aids the properly way
and of how to be a self advocate. It was also the teachers at the deaf
school who really made sure I understood English, and of how to use
proper language and grammer skills. Most deaf people's English skills
are not as well developed, but of course it varies from person to
person. I was the only one in that group of same-grade deaf students who
was able to do school work at the normal grade level, instead of being
behind. I even did advanced math in 6th grade, and got started on 6th
grade English while I was still finishing the 5th grade year. The
teachers have really worked hard with me. Yes, they worked just as hard
with the other students. Perhaps I just did better because I had heard
language the first couple of years of my life before going deaf, and
that worked to my advantage. I don't know.

I will definitely be sad when the building is torn down for good. But it
is nice to know the school district is willing to place a memorial of
some sort, like a bench or a plaque, as evidence that a school for the
deaf did exist in that location.

I better get going on that website, huh. Yeah. I very slowly started to
work on a website for the Wyoming School for the Deaf in June. An
archives website, with a news archive of news articles of the school, a
photo gallery, a comments area for people to share comments or memories,
etc. Just only this month I figured out how to work the gallery, but I
can't even access it right now as there are new owners for the website
host (5gbfree.com) and there's a lot of issues. Hopefully those issues
will be resolved soon or I'll have to find another host. But I do
definitely need to get going with the site. There are tons of old
articles I need to type up (the more recent ones, I'll just use the Star
Tribune site links, I have gotten permission from the editor to use the
articles for the site, and we agreed the more recent ones I'll just link
to, while the more older ones I'll post myself).

Wow, 11:03. I should get some sleep, afterall it is WYHI day tomorrow.
Wow, hard to believe WYHI has bee going on for 25 years.. Wow.
--Meghan

whoooaaa

Oh wow ok. Last week I called the audiology to make an appointment, and that appointment was today at 4. I arrived just in time and within a couple of minutes Shane and I were in his office. I told him I had been audiologically evaluated for a cochlear implant and from the results, that I was a candidate. So he's excited about it. I made copies of the audiogram and test results that Allison had given me so that he could have it in my records. He hooked up my hearing aid to the computer and brought up the lower frequencies gain. I also had him activate the FM+M mode too, so that I can listen to music AND also hear what is going on around me for when I take my music to work with me.

Now, I'm hearing my computer buzzing once again. And when I got into my car after the appointment and started it up, whoa! I was hearing stuff I hadn't heard before, or maybe I did hear it before but just don't remember it. Anyway, yeah. Everything sounds slightly different, and a bit louder, but I'm sure I'll get used to it over time. And ever since I got back from Denver, I've been forcing myself to deal with the background noise that bother me, instead of turning off my hearing aid. If I can't deal with the background noise NOW, then how will I deal with them with an implant? If I absolutely have to, I'll turn off my hearing aid for only just a few minutes, then turn it back on.

Shane is happy for me though. He says Allison is a great audiologist, and that Dr. Kelsall is an excellent doctor. And he has a patient that is going to get his implant turned on soon and he's pretty excited about that. Shane told me this patient was his first adult patient with an implant, so that's pretty cool.

Also recently found out that the Star Tribune gets their insurance through BlueCross BlueShield. Human Resource wants to be sure I'll continue working the "full-time" hours that I have been working so that I can get the benefits. Things are happening within the prepress department, hence the unsureness of the hours. Hopefully I can continue to work in that department, but I'll talk to the prepress supervisor and see what he says. Hopefully all this gets worked out.

more on today's evaluation

Ok, here's a bit more from today's evaluation. I made a post at hearingexchange.com and mentioned some stuff that I didn't even mention in the earlier post. Basically, here's a copy/paste from that particular post.


Did the hearing testing, blah blah no surprise. They even put a hearing aid on my left ear but that ear still had no results at all. But I got a 52% score for the repeating/word recognition/sentence recognition testing part, which is good haha. So I am a candidate due to the audiological testing. Next, the CT scan to see what the cochleas are like. Mom said when they considered an implant for me when I was a very young child (this was in the late 80's), they wouldn't do the implant on my left ear due to ossification; apparently half of my cochlea was ossified at that time... So it's probably FULLY ossified now. So that basically leaves me with my right ear for the implant. The audiologist believes I will do very well with an implant in the right ear.

Now mom's all worried and concerned and scared. Scared that once I start this, that I'll give up at some point. I keep trying to tell her I WON'T give up, that I know it takes a lot of effort and time for the implant to work and all, and even before t She's just worried, and sometimes it drives me crazy. She gets a bit over protective with me at times.

So, yeah. Also, the audiologist wants me to go to my HA audiologist and have him adjust my hearing aid again so I can hear more of the lower frequencies. When the recognition test was done, it's a loop instead of a decline, and the CI audiologist said it was more common to see a decline, not a loop like mine. I didn't hear the lower frequencies (I heard TOM instead of THUMB, and YOU instead of YOUTH, etc.). That's the first thing she wants me to do. Then get a CAT scan, then make another appointment for a visit with the surgeon.


Funny how I forget some details. Eh, it happens with everyone at times.

The evaluation.

Finally, Allison came and got me. Mom and Rob left and I went into a
room with Allison and an intern. We talked about the implants, and I
gave her some information. Then we did the hearing test. Beeps, tones,
repeat words and sentences, three or four times. Without hearing aids,
right ear with hearing aid, left ear with hearing, both ears aided...
Turns out, audiologically I am a candidate.

She showed me what the internal and external components looked like of
the Cochlear device. She also told me that their center is more biased
towards Cochlear over AB and MedEl. They prefer Cochlear as they have
the best reliabilty with their devices. MedEl and AB both have had their
devices pulled off the market a few times due to reliability issues.
Turns out there are 2 manufactures in charge of the internal device for
AB, and the 1 that does the covering of the internal device doesn't
always seal the "package", so fluid gets inside and ruins the device
after a couple of years or so. I didn't know that abou AB, so I
definitely learned something new.

Then Mom and Rob comes into the room. More talking and discussing.
Allison says I should have Shane bring up the bass levels on my hearing
aid to hear more of the lower frequencies. Also get a CT scan done, so
they can see what the cochleas look like. There is a major concern with
my lft ear. I've had abolsutely no responses at all, and they are
concered of the ossification. So I may have to do the right ear, and
I've realized that in the last few years. But, I am willing to take that
risk and lose whatever I have left in my right ear to get the implant,
if it will help me to hear better. And Allison thinks that the implant
would benefit me greatly. She also said that if there is no ossification
in the left ear and I choose to have the left implanted, that it could
take up to 2 years before I may even understand any speech and such. But
there's a good chance of ossification in the left ear, we just don't
know how much. So I may just do the right ear. Lots of things to
consider.

She also mentioned that I'm the only one they're working with that has
no insurance. She gave us a number to call, and said to try SSI again
and such. So when we get home, we'll see what we can do about the
insurance. $105,000ish is what the entire thing costs. I'll definitely
talk to Huma Resource about the insurance some more, for sure.

Now, my mom is really scared. She's scared that I may stat the process,
then quit at some point. Yes, I may be really strongwilled, but I am
very determined to do this and to make the implant work for me. I know
it takes time and effort, but I feel like I can go through with this. I
don't see myself giving up, I really don't. But then again, there is
never knowing what will happen in the next month or week even. There's
never knowing what I'm going to do and what my mind decides, usually. I
know, my mom is being a mom, but sometimes I feellike she doesn't truly
think I can do this. She assures me that she is 100% behind me on this,
whatever I decide, but she is still scared of the outcome. Will I give
up after a few weeks or will I keep working away? That's what worries
her. We already have had a small fight over this.

Well, now I've got this book of materials to sift through and share with
my mom. Do a lot of thinking and considering... And get my hearing aid
bass levelsback up, CT scan done and a meeting with the surgeon to
discuss the C scan results. Great, lets find out how much a CT scan
costs.

Waitng

Well, here we are in the waiting room of Rocky Mountain Ear Center. The
appointment was for 11, but it's now almost 11:30. What's with the long
wait? Waiting sure does get boring. Where is the audiologist? Waiting,
waiting, waiting....

leaving in the morning

Well! We get up really early in the morning to make our trip to Denver. Originally my mom and I were hoping we would stop in Loveland to do some shopping, even check out the Halloween store. But then, of course, leave it to Rob to ruin that plan. He's gotten 3 $300 tickets for the Denver Broncos game which is at 2 tomorrow. So we'll be heading straight to Denver instead. Gameday tomorrow, then Monday at 11 is the CI evaluation. Let's hope the evaluation goes very well and that I leave the center with some good news! I probably won't even bring my video camera afterall. But I'll bring my digital camera along, try to get some shots and post them on here when I get home.

Wish me luck!

subtitles

YES! I bought Supernatural Season 2 on DVDs today... and was I surprised to see the subtitles option under Languages. The first season doesn't have the English subtitles, so I was rather disappointed. Season 5 of Smallville has no English subtitles as well. So hopefully Season 6 will have the Subtitles option again. I've missed out on Smallville this year, and quite a few episodes of Supernatural. Just having the subtitles really helps me to stay caught up and make sense of everything.



I fixed up my earmold... Cut the top off of it (it's skeletal style). I really don't like the top part, as it causes many sores in the topper part of my ear. But now, it's fixed and filed down enough so I can put the mold in my ear, and it doesn't even touch the sore/zit that's still in my ear even after 2 weeks.

tinnitus theory?

Today, I was talking to my good good friend Jo (who is deaf herself with hearing aids, and amazingly enough, was the interpreter for deaf students for so many years!)... We were talking of random things, since we were bored and we always like to talk when I stop by the library.

Anyway, we got to talking about tinnitus. I wasn't wearing my hearing aid due to a zit or sore that's in the ear, but right on the edge (not OUTSIDE the ear, but not INSIDE the ear, just on the edge right above the ear lobe, if that makes any sense), something that's been bugging me for a couple of weeks now. Anyway, I signed to her that my ear was ringing away, and we just got to talking about the tinnitus. It's been said that when one has tinnitus, it means their hearing is damaged or diminishing or something like that, right? Well, I thought, "That cannot be the case with me... with all this constant tinnitus that I've had for years, you'd think I'd be completely deaf by now!"

Hmm... what if... it's just my brain causing the tinnitus just to make up for the lack of noise? Normally, I wear my hearing aid everyday, usually from the time I get up (or have to leave for work, I like to sleep in late) until I go to bed. Well, I've been trying to keep my hearing aid off as much as possible because of the zit/sore, since the earmold just irritates it even more. I just thought, maybe my brain is so used to hearing things all day, that when I don't wear my hearing aid for some time during the day, it starts making noise to make up for it? I don't know.

Just a thought, and Jo actually liked the theory. It makes sense to me. I've experienced tinnitus for YEARS and YEARS, ever since I was a little kid (I remember sitting in the sound booth when I was going through a hearing test, and I was never sure if I heard the beep or if it was just the tinnitus... since it seems like my tinnitus likes to act up when I'm in the sound booth). And if I don't wear my hearing aid, the tinnitus is there and it's constant. Sometimes it's loud, sometimes quiet, sometimes the same pitch, sometimes different pitches, and I can't do anything about it unless I put my hearing aid back on and MAKE SOME NOISE!

audiogram

And here is my most recent audiogram, which was done while I was still in high school. Yep... As you can see, there's no results for my left ear, as I never heard anything. Has there been any changes to my hearing since high school? I have no idea, but we'll find out when I go to Denver for the evaluation.

new cord!

So... Yesterday when I came home from work, mom passes on 2 messages that were on the answering machine. Dentist appointment Monday.. Oh and the cable cord has arrived at Shane's office. WOO! Today I went to the audiology and picked up the cord for my FM transmitter. Cost me $50, but it's worth the money. Mom may not think so, but I do. I use both FM transmitter cords frequently, so it's not like one cord is just laying around collecting dust. I just leave one plugged into the computer (I have to plug it in BEHIND the computer, as there's no place to plug in speakers or headphones in the front), and I use the other one with my CD and DVD players. I use all 3 machines just about all the time, so no problem. I think the last time I ordered a cord, it was $75... I think.

Anyway, also, while I was still at the office, I also asked for a copy of my audiogram. I just remembered, I knew they had a copy or 2 of my audiogram from when I was in school and the school district audiologist did a hearing test on me while I was in 9th grade (that was the last time I had my hearing tested within the school district). I remembered I had a hearing test done by Kerri at the old office while I was in high school (junior or senior year). I was applying for SSI at the time and they wanted a recent audiogram for proof. I didn't know if that audiogram was in my file, as at the time, Shane and Kerri both were in separate offices and buildings. I was happy to see the most recent one in my file, so a copy of that one was made. I'll have to scan it so you can see what my hearing loss was like in high school.

I'm taking the copy with me to Denver for the evaluation. I don't know if they'll want it, but I'll bring it anyway! I know there'll be a new one made, but thats ok. It would be nice to compare the last one with the new one, to see if there's been any changes with my hearing. I don't know if my hearing has dropped a bit in the last few years or if it's just my hearing aid (even though it's been adjusted several times and hasn't really mad much difference), but I most certainly am not hearing as well these days as I used to while I was younger. I used to be able to hear well enough that I didn't have to watch my mom when she spoke, I could just listen. That is not the case anymore today.

Ian Michael Smith

Ok, I knew Ian Michael Smith was deaf and had hearing aids, but I had no idea he recently got a cochlear implant. Hm! I receive alerts from Google in my email for news and blogs that has to do with cochlear implants, deafness and meningitis... Well today I actually opened the email and there was a livejournal that was linked. So I clicked on it, curious. Don't know who Ian Michael Smith is? He played the little guy, Simon, in "Simon Birch," which by the way, is an excellent movie (based on the book "A Prayer for Owen Meanie").

Anyway, he just recently got a cochlear implant, a Harmony or Auria (probably Harmony).

Here's the article:

Ian Michael Smith, in an interview the day after his implant was
activated.
(photo by Roger Ebert)

"It’s about customizing your body..."
/ / / August 18, 2007
by Roger Ebert

He couldn’t hear, I couldn’t speak, and we had a great interview.

I first met Ian Michael Smith in 1998, when the Elmhurst native was 11 years old and starring in the movie “Simon Birch.” Now he is 20, a sophomore at MIT, majoring in electrical engineering and computer science. In those nine years, Ian hasn’t grown an inch, and an inch would be a lot, because his height is 3’2”.

He is one of the smartest people you’d want to meet, cool, calm, funny. He gets around by himself in a motorized wheelchair. When he flies to Boston, his parents wave goodbye at O’Hare security. At MIT, he doesn’t have a care-giver. Just turns up on his own.When Ian was three, he was diagnosed with Morquito's syndrome, a form of dwarfism which limits his height but not his life span. A side effect of the syndrome is increasing deafness. On Aug. 8, he had his new cochlear implant activated by Dr. Stephanie Yaras at the Children’s Memorial Hospital Westchester clinic. The implant was surgically inserted into his brain three weeks earlier by Dr. Nancy Young at Children's main hospital in Lincoln Park.

<--Dr. Stephanie Yaras fits Ian Michael Smith with external circuitry for his cochlear implant at Children’s Memorial Hospital’s Westchester(photo by Rich
Hein for the Sun-Times)

With cochlear implants, sounds are picked up by a microphone attached to the side of the head, and bypass the ear with a wire that transmits them directly into the auditory centers of the brain. It takes some therapy to learn how to interpret this form of sound wave, so when Ian and I met on the day after his activation we had our work cut out for us: I can’t speak at the moment because of post-surgical complications that require a trach tube. No problem. We sat in my living room and used our Mac laptops; I sent him questions by Yahoo Messenger, he responded verbally, and we recorded his answers. I have recently become fascinated, for obvious reasons, with the varieties of human communication.

Now sitting before me was a man who uses himself as a lab for electronically-assisted living. He arrived with his parents. His dad, Steve, is a hospital management consultant in electronics, and his mother, Gayle, is a middle-school band director. Ian once played the trombone and sang in the choir; indeed, in 1998, he seemed involved in every possible after-school activity including the Cub Scouts.

<-- Ian Michael Smith and his customized cochlear implant.(photo by Rich Hein for
the Sun-Times)

“Three weeks before yesterday was the surgery when I had the implant put in my head,” he said. “And now that everything’s healed, yesterday I got this outside thing turned on for the first time. We tested electrodes and set their volumes separately and got speech turned on for the first time. Because it’s only been a day right now all I’m really getting is a rhythm, a beeping.” He said his hearing loss has been progressive, “and then my freshman year I got an ear infection that traveled into the bone behind my ear, and I ended up with no hearing in either ear, because I couldn’t wear my hearing aids. I lost my entire spring semester to that. At MIT, there’s a lot of communication going on, so this implant will make a big difference.”

Ian used everything possible to hear better: “I used a system called CART, Captioned Audio In Real Time. It’s a way of typing phonetically, like court reporters. I had the CART reporter there. And I used an FM system so that the professor was miked with a transmitter that sent directly to my hearing aids. For small group situations, I just lip read or do all the things you normally do, like make sure it’s a quiet environment, or get people to repeat things when necessary.”

How did this go over at MIT? “The professors were fascinated. Here was this cool new device in their classroom, this CART. I think maybe they were a little disappointed to learn it’s just a dictionary, not speech recognition or artificial intelligence. And now comes the implant, and this is MIT, where we love Star Trek, we love sci fi--this is the geeky dream, right?” What’s amazing, he said, is how much the human brain can do with so little: “The brain is fantastic at finding patterns with very little actual information. When you talk to people who lost their hearing later in life, they’ll tell you almost to a person that when they lip read, they hear. With an implant, the brain is reconstructing tens of thousands of nerves-worth of signals from maybe only 20 or so inputs, and yet by the time the patient adjusts, it sounds in most cases very natural.”

In John Irving’s novel A Prayer for Owen Meany, I said, your character thinks God has a purpose for him, and gets infuriated when he senses condescension. But you seem pretty level-headed.“I feel a certain serenity and inner happiness, a sense of rising to the challenge. That’s what it’s about. And I’m lucky I haven’t had normal hearing as long as I can remember, so that’s not something I aspire to. If I can understand speech and music, I’m going to be very happy. If you suggested to me that I was going to wake up tomorrow with perfect hearing in both ears, that would be quite a shock to me.” Just in terms of daily living, his father Steve said, “I wanted him to go to Stanford because the electric scooter doesn’t travel in the snow. I was saying, they have ramps, and there’s sunshine and he says, no, I’m going to MIT.”
“It’s worked out,” Ian said. “I can’t say I haven’t gotten stuck in the snow but I’m still alive.”Gayle said, “He’s very active in improving the accessibility around campus and around Cambridge.” “And outside of Cambridge, in Boston,” Ian said. We spoke about our mutual friend Marca Bristo of Chicago, founder of the disability rights group Access Living, who will have her face on a postage stamp one of these days.

I asked how many people still remember that he was in Mark Steven Johnson’s “Simon Birch,” which also starred Joe Mazzello, Ashley Judd, David Straithairn and Oliver Platt, although it centered on his character. “My friends mostly know that I was in ‘Simon Birch.’ The professors? I don’t know. Every now and then I’ll be talking to a friend who I’ve known for a couple of years and they’ll go, ‘wait, hang on, I just heard something from a mutual friend of ours…’” No temptation back towards showbiz? “I’ve moved on. Right now I’m doing the college experience, so that part of my life is probably over.”

That brought us around to the use of dwarfs in showbiz, the emergence of Peter Dinklage as an authentic star, and the now-disapproved term “midget.” “I prefer dwarf,” Ian said. “I think Little Person is generally accepted.” Steve said: “We go to the Little People of America convention. I freely use the words ‘dwarf’ and ‘little person,’ and they are always accepting of those terms. The term ‘midget’ would be a term to stay away from. No matter how much I look into it, I can’t figure out why they picked that one to dislike.” There was a dialogue on my web site, I said, initiated by a dwarf actor named Daniel Woodburn, who explained a lot of things. He said “midget” was coined by P.T. Barnum to describe Tom Thumb. “Yeah,” Ian said. “I read that. I think in the end it’s not about where it comes from. You use the terms that are accepted because that’s the way to communicate with people without having anyone get bent out of shape.” His father said, “Originally there was nothing bad about ‘midget,’ in history.”“At (ital) one (unital) point in history,” Ian said, in that firm understated way I remembered he had even at 11. He has a way of tactfully letting you know that he is right. “Consider the word ‘gimp’ as an in-term and you see the same thing,” Ian said. “It’s fascinating to see people discussing whether using it is reclaiming the word, or buying into the bad connotations that go with it. You oughta see the disability rights blogosphere latch onto that one.”

Will that science-fiction dream of people merging with robots ever come to pass? I asked. “We’re seeing advances in human augmentation that we had no idea 10 or 20 years ago would be possible. I don’t think anyone ever expected cochlear implants to be as advanced today as they are now. Now we have the same sort of technology being used as visual implants to provide sight to people, and to treat Parkinson’s with brain stimulators. It’s not about augmenting human capability for its own sake. In my case, I’m not going to rush out and start injecting steroids just to be strong because I have no use for that. It’s about customizing your body to do what you want it to do.” His dad mentioned some of the things Ian’s body could do: “When Ian was a boy we started teaching him to sail, and even though he can’t handle the kinds of boats that a 20-year-old usually can, he does have a boat and knows how to sail. You can look at a small person and say, he can’t do that. But he can do it.”

“One of the opportunities Ian got as a result of ‘Simon Birch,’ was he got invited to give public speeches,” Steve said. “He began doing that at around age 12, including the keynotes at medical conferences in Washington. I’m sure that will be incorporated into his professional life.” I think so too. With what he’s already done, what’s next? We make some small talk, Ian drinks some Coke, and I tell him, if he’s thinking of the University of Illinois as a place to teach, my home town of Urbana-Champaign is the most wheelchair-friendly city in America.“If I knew where I was gonna be 5, 10, 20 years from now,” he said, “why would I be in college now? If I knew what I was going to do that far down the road, there’d be no point in doing it.”

Ebert’s 1998 interview with Ian Michael Smith and his review of “Simon Birch” are also at http://www.rogerebert.com/

hearing and lipreading

Well, the other day while I was visiting with a very good deaf friend of mine, who also happens to be an interpreter... well, we got to talking about my "hearing" and "reading" skills. In order for me to HEAR and make sense of what is being said, I need to read lips and see the face...... And she was telling me that I am a horrible lip reader. "Really?!" I asked. "Well, yeah! Several times when I've interpreted for you, I used to drop my signs but continued to mouth, and you would always go 'huh?'" she says. "Really? I never realized that."

So, lo and behold, I tried this out tonight. My ear hurts and it hurts to wear the hearing aid, so why not just go deaf? I'm at work, going around deaf. I'm talking with a co-worker, while deaf. And she's talking back. I can see her face and her lips, but only catch maybe 1 or 2 words. Everything else I go "huh?" She repeated what she was saying 2 or 3 times and I still didn't get it.

Hm, I'll have to try this at home with my mom and see what happens. I never have realized before how bad a lip reader I am. If I can hear the words that are being said while I lipread at the same time, then I'm fine (most of the time). But turn off the voice, I'm lost. Or take away the visual and leave the voice, I'm lost.

I need both, or I'm screwed! I don't know, I just found this to be rather interesting. Definitely will have to try this at home with my mom when she gets back from her vacation, and with my stepdad and whoever else I can chase down.

By the way, when I go for the evaluation, should I mention this to the CI audiologist and see what she says? I don't know if I should or not. Hm.

hearing aids & FMs

Would anyone care to tell me WHY I am wearing my old hearing aid? And I do mean OLD! This hearing aid is one of those analogs from Phonak, purple of course.... which I received in the 3rd grade. Yeah, that's what, 13 years ago? I must be incredibly bored or something. And boy, I am just amazed at how DIFFERENT everything sounds. I am so used to how things sound with my digital Supero (once I get used to the adjustments)... so right now with this old analog, oh man. Everything just doesn't sound clear at all. It's all muddled, and I can barely recognize the music I'm listening to. Amazing! And I'm sure I'll be going through this again, several times, when I get the cochlear implant (that is, if I am a candidate and actually get one).


Anyway! I did go to the audiology this morning. Shane was out (can't remember what the assistant told me he was doing), so it was the assistant helping me. Last night I was playing with my Phonak FM transmitter, since I've been having issues with it for a while. Of course, it didn't occur to me until LAST night that maybe, just MAYBE, it's not the FM, but rather, the cord itself. So I played with the cord and all... I can hear music, nope not anymore, oh there it is, oh wait it's gone, oh it's back! Nope there it goes.... Well crap now what? Oh duh. I have an extra cord sitting on my computer desk from when I had it plugged into the computer for a while (this was why I bought the extra cord just last spring, so I could use the FM with the computer). So I switched out the cords, hello mystery solved! It's the cord that's faulty and not the transmitter. And for more than a month I was thinking it was the FM.

So, the assistant said she will have Shane order a replacement (I would like to continue to have 2 cords on hand, 1 for the computer, and 1 to use between DVD and CD players). Then we switched ear hooks on my hearing aid to see if it makes a difference (my hearing aid sure makes my ear hurt after a while). Right now I can't tell if it's made much of a difference, since I have the habit of leaving my hearing aid + FM shoe hanging off from behind my head when I listen to music (this is also a way to let my coworkers know I canNOT hear them when I'm at work, if they have taken the time to read and memorize the "Tips of how to communicate with a deaf person (me)" paper that I had made up and passed out).

Yeah. Oh, did I have fun going through the archives while I was at work. Since I'm actively working on the WSD website, I decided to go through the Star Tribune archives to find any and all articles and letters/editorials about the deaf school to use for the website. Found a bunch, but I know it's not all of them, so I'll have to check the scrapbook and binder and figure out what I have already, and which ones I will have to type up at some point. Now, tomorrow, if I remember to, I'll ask and make sure I can post the articles onto the website. I mean, I'll be giving the CST full credit for each and every single letter and article that I post, so it shouldn't be too much of a problem, right? I'll check and make sure. It just would be a nice addition to the website, it's history and perfect for the "archives."

articles

Oh look at all of these articles! Wow. Late 1980s, very early 1990's... Sure I already had a lot of deaf school newspaper articles from '91 and '92 thanks to my grandmother. She saved a bunch of the articles and even letters to the editor and political cartoons and such, and put them into a scrapbook for me. All the stuff from when they tried to close the Wyoming School for the Deaf in the early 90's. Well, in this binder, there's a whole bunch more. Jo let me borrow it like last year or so, so I could make copies of what I didn't have in my scrapbook. I was going to hand-type every article and letter I had in my scrapbook for the website (hey, it's history!), and now, here's tons more to add to the website. I'm definitely going to be quite busy with this project. But it's something I'm serious about, something I want to do.

It's a shame that the state has tried to get rid of "evidence" of what happened at the deaf school. There used to be a bunch more stuff that were saved at the deaf school. But the state either gave away a bunch of stuff, or just tossed them out. Apparently the deaf school isn't that important to the state. Sure, the school building may no longer serve as a school for the deaf, but come on. All this stuff that were tossed out, they were important stuff! Documents, pictures and videos of whatever happened at the deaf school. It's like as if the state is trying to erase the deaf school's history, but that will never happen. Once I get all the copies/scans I want from this binder, I'll return it to Jo and she'll put it away in a safe place. There's 50th years worth of history at the School for the Deaf, so I'm going to try to get as much as I possibly can onto the website. Makes me glad there is a free website host server that provides 5 GBs worth of webspace. Most other hosts don't provide much, considering how much stuff I have here.

website frustrations

Well, what do you know! I found a new webspace host back in June for the Wyoming School for the Deaf website. I used to have a website called "Deaf Wyoming" which also included information and stuff for WSD. Well, that old website was basically deleted due to lack of update for months, so I decided I wanted to make a whole new one. And hopefully this new one will be better than the old one as well.

Anyway, since June, I have been struggling with the Coppermine photo gallery for the website. I've followed the instructions and everything, but every time I tried to upload a photo, it just did not work. Well, last night, it worked! I was shocked a thumbnail was actually created and everything. The downside to this is, I have to upload every single photo all over again. I had managed to get all of my photos uploaded to the webspace, since on Coppermine there is an option to "batch add files". When I try to batch add files, well of course, thumbnails cannot be made. Why, I don't know. So I have to upload each individual photo, and that is going to take some time.

But, at least I finally have the gallery going. I'm still working on it, uploading photos. And as for the actual website, well, I'm still working out a layout for that. I still have the Deaf Wyoming website saved on a disk, so I'm using those files and completely redoing everything. Hopefully there will be more information, history and news articles this time. This year marked the 50th anniversary since the Wyoming School for the Deaf was started, so of course, there is a lot of history and news. A lot of the history, I just only recently learned in June when I attended the reunion.


And in other news... I did download the cochlear implant surgical procedure from the OR-Live.com podcast on iTunes (it's available for download for FREE) a while back. After the last visit with Jo, I told her I would try to put the hour long video onto a CD for the library. So yesterday, I was able to burn the entire thing onto a single disc. Stopped by the deaf school library and gave the disc to Jo. She tested it out on her computer, to see if it would work (you'd need to have the latest version of Quicktime for this file to work, since it's m4v format). She had to upgrade her Quicktime, but she got it working. She started watching it, but it was just too quiet and she couldn't really hear anything. But she's happy to have a copy for the library. It's for educational purposes, so why shouldn't there be a copy for the library?

MSN article

My mom printed off this article for me, so I thought I'd post this on here. It was very interesting to read of one person's experience of how he heard after his implant was activated.


What It Feels Like … to Regain Your Hearing
Musician Richard Reed went deaf in 1993 after a reaction to an antibiotic. In 2002, he underwent cochlear-implant surgery.
By Richard Reed

When the audiologist turned on the cochlear implant, I heard some loud beeps and boops; then I heard her say, "Can you hear me?"
I could indeed, but had something gone wrong? I'd expected it to sound weird, sure, but she sounded as if she were using bubbles instead of words. Her voice was musical, like a toy piano, each syllable a tiny ping. My reply was loud, a gruff, high-pitched Popeye voice. The audiologist said there was nothing wrong.
I drove home, sat in my driveway, and thought, How can silence be so loud? From everywhere and nowhere, things were twittering, sizzling, crackling, and plopping. My own breathing was creepy. I'd forgotten that shoes on sidewalks make tiny crunching noises. At the door to my apartment, I dropped my keys. They made a sound like little bells jangling. I picked them up and purposely dropped them again. Hey! Beautiful.
A lot of things sounded oddly human. A bowl of Rice Krispies sounded like a tiny audience applauding my banana-slicing technique. Clocks said, "Tick, tock." The world was suddenly filled with wacky onomatopoeia. People sounded strange, too. Spoken words sounded like droning robotic cartoon rodents. Add Darth Vader to Alvin and the Chipmunks, then divide by four.
Today, the bizarre tones are gone. Words sound perfect, maybe even slightly better, like an FM-radio deejay from the days before corporate playlists, with each slightly compressed s and t crisp and distinct. I can close my eyes and hear sweet nothings, which really are something.

documentary?

So, I'm trying to decide if I should make a documentary, documenting my cochlear implant process. I have a digital video camera, Windows Movie Maker (although my computer basically sucks...)... hm. Maybe if I could get a better computer to make the documentary on... Oh I don't know. I just think it'd be fun. Even if I don't make a documentary, it'd still be fun to document the process. I am planning on taking my video camera with me to the evaluation appointment on the 17th. Absolutely! I have extra blank tapes too... somewhere. It's just a matter of finding them. Yep.

ooo what did I just find tonight?

HOLY CRAP! I can't believe I actually found my left hearing aid! Wow, after all this time.. We've been living in this house for more than 3 years now, and just tonight I found my left hearing aid.

I only started wearing a hearing aid in my left ear again after the CI audiologist, Allison Biever (she works for Rocky Mountain CI Center in Denver), told me I should wear it to keep the nerve and whatnot stimulated, whether or not I could hear anything. She told me this at the CNI Cochlear Kids Camp in 2003, so I started to wear a hearing aid again after getting a mold made for the left ear. But Like oh maybe after a few months, I stopped wearing it again. And after graduating high school, my mom and I moved in with her boyfriend, and all of my junk got misplaced or put away.

I was rather surprised to see the old purple hearing aid with the left earmold, sitting in the small bowl that I had made in pottery class, in a gift bag. Wow. Unbelievable. At least I have the hearing aid back again. But will I wear it again? I don't know. We'll see.

an interesting article

Well, I came across this article a couple days ago or so, and thought it was a really interesting read. Advanced technologies to use with the internal component of a cochlear implant is being studied. The article was written by the author of "Rebuilt," which is neat.

Sound effects: An optical cochlear implant would bypass these inner ear hair
cells (above), which are nonfunctional in many cases of profound deafness.
Optical radiation would stimulate the neurons that are normally triggered by the
motion of these microscopic fibers in response to sound vibrations. Credit:
Steve Gschmeissner / Photo Researchers, Inc.

Friday, August 10, 2007
Making Deaf Ears Hear with Light
A laser-based approach could make cochlear implants, which currently use electrical signals, more effective.
By Michael Chorost

About 100,000 profoundly deaf people now hear with cochlear implants, which work by stimulating the auditory nerve with a string of electrodes implanted in the inner ear. While the devices enable many users to converse easily and use telephones, they still fall short of restoring normal hearing. Now scientists at Northwestern University are exploring whether laser-based implants could one day outperform today's electrical version.
The mammalian ear uses neural firing rates as one way of encoding sound. As part of a project funded by the National Institute for Deafness and Other Communication Disorders (NIDCD), Claus-Peter Richter and his colleagues at Northwestern have demonstrated that they can control firing rates in the auditory nerve of animals using infrared laser radiation. They are now trying to establish that it's safe to use for long periods of time and that it can manipulate neural firing rates with enough precision to send useful information to the brain.
With conventional cochlear implants, electrical signals spread in the wet, salty environment of the body, muddying the signal. That makes it difficult to trigger specific populations of nerves inside the cochlea. Further complicating matters, simultaneous pulses in different locations merge with each other, stimulating the cochlea everywhere instead of in the desired locations.
Engineers work around the problem by triggering only one or two of the 16 or 24 electrodes in the inner ear at a time. It's done so rapidly that the user has the illusion that all of the electrodes are firing, but the result is still a relatively crude simulation of normal hearing. To many cochlear implant users, voices sound mechanical and music sounds washed out.
An infrared laser, on the other hand, can be beamed at nerve fibers with pinpoint accuracy. Furthermore, the directional nature of laser light means that optical pulses in different places won't interfere with each other. The increased precision of neural stimulation would make voices and music sound more natural, and users would be able to converse in noisy environments more easily.
While it's not yet clear why infrared radiation can trigger activity in the auditory nerves, Richter hypothesizes that it heats the cells slightly, opening ion channels in the cell walls and sending an electrical signal down the length of the neuron.
A major question is whether it's safe to stimulate nerves in this way for long periods of time. So far, Richter and his colleagues have shown that auditory nerves in anesthetized gerbils can be stimulated with infrared laser radiation for up to six hours without damage. At present it's not feasible to run the tests for longer, but Richter is planning long-term studies in animals with permanently implanted devices.
The researchers are also figuring out how to precisely control neuron activity with lasers. The ear encodes pitch and loudness not just by firing nerves in particular places, but also by modifying the rate at which they fire. So far, Richter has shown that laser radiation can reliably make neurons fire up to 250 times per second, which is comparable to the rate at which early-model conventional cochlear implants drive neurons.
Human trials are years away, but there are several ways in which infrared technology might be used to build a working cochlear implant. One is to use fiber optics instead of electrodes in an array inserted inside the cochlea, somewhat similarly to the way conventional cochlear implants now use electrodes. Early trials of such a system might involve replacing one or two electrodes of a conventional implant with fiber optics to test their effect. Another is to put an optical fiber bundle in front of the cochlea's round window to stimulate auditory neurons without opening the cochlea. (The round window is a thin membrane in the cochlea that absorbs fluid displacement as sound waves travel through it.)
An even more futuristic possibility is to use gene therapy to make auditory neurons responsive to particular wavelengths of light. At MIT, Ed Boyden has been altering nerve cells' genes so that they fire when exposed to one wavelength of light and stop firing when exposed to another. According to Richter, this approach would require less power to activate cells, which might be safer in the long run. Of course, this approach carries all the caveats that typically accompany gene therapy and would require a way to precisely deliver gene therapy to the relevant auditory cells.
"If proven safe and efficacious, optical stimulation could open up ultra-high density stimulation interfaces for the peripheral nervous system," says Boyden. "The process of combining optics and neurons may also pave the way for many future innovations - moving beyond the ubiquitous electrode to new modalities of neural control."

it's set!

Monday, September 17th is the cochlear implant evaluation appointment date, at 11 a.m. Woot! Now I'm anxious for that date to approach. Heeeee.

September?

Cochlear implant evaluation will happen sometime in September. The first opening they have is Sept. 12, but that's right in the middle of the week. It would be easier if it was a Monday appointment, that way we can go down on Sunday, I can go through the evaluation on Tuesday while Mom and Rob do whatever they want to do (evaluation will take a few hours, no need to have them sit around waiting for hours being bored). Then we come home either Monday night or Tuesday in the morning. I emailed the CI Center's director back and asked if there were any openings on a Monday. Getting closer! I'm getting kind of excited. Of course, I shouldn't get my hopes up. I mean, it's just an evaluation to determine if I'm a candidate. I shouldn't just assume I'll be a candidate, cause I won't know until after the evaluation. But we'll find out.

straightened out a bit

Sooo... They can determine eligibility just from doing an evaluation only. Ok, good enough for me! Do the evaluation, worry about the cat scan stuff LATER. I don't really see the implant surgery happening anytime soon anyway, since I'm still trying to find out more about the insurance thing at the Star Tribune. So I'll let the center and the founder of Meningitis Angels work out costs, and let the founder get the approval to pay for the evaluation, then an appointment will be set up. Let's just worry about getting through the evaluation and find out if I'm a candidate. And if I am, then I'll work on getting the money to pay for the cat scans later on, and go from there.

confusions

Turns out there was some confusion over the evaluation price. The evaluation part costs more than $300, but for those paying out their pocket (those without insurance typically) would be given some sort of discount apparently? I don't know. If I were to do the FULL evaluation, with the doctor visit and all, that'd be over $600, and I have to get the cat scan done locally. Oh gee, cat scan of the head, now that's gonna be a bit pricey. So right now I'm thinking, lets do basic evaluation, with the hearing test and what not, and worry about the cat scan and doctor visit some other time. But we'll see what Meningitis Angels says. The founder, she says she'll call the implant center for more information on the cost, as she and the Organization want to help out somehow. So now, I'll just wait and see what happens.

finally fixed!

Hearing aid is finally adjusted right, I think. Shane, wow. He had all these computer problems, and he worked SO hard to get at least 1 laptop working just so he could get my hearing aid adjusted before my sister's wedding. The audiology's closed on Saturdays, but he still went in on Saturday morning just to adjust my hearing aid. He knew how important the wedding was and how important it was for me to be able to hear what was going on so... wow. I don't think Kerri would have done that. I'm definitely going to continue to see Shane for any hearing issues I have. I just like what he does better than what Kerri does. I just haven't been happy with what Kerri has done with my hearing aid, so I'll just stick with Shane. Now, let's just get my FM transmitter working right again. How many times have I had that stupid thing replaced now? 2 or 3 times since 2001, I think it was. That transmitter sure does break pretty easily... I'd get a new, different transmitter, but I certainly don't have the money for it.

dreams are... interesting?

Well.... I had this dream last night... in which I had gotten a cochlear implant. Yeah, so I've been highly interested in cochlear implants for a few years now and have been wanting to get one for quite some time, but to DREAM about it? What gives? It was just too realistic too, and weird at some point too. I mean, in the dream, I actually went through the surgery and the activation and everything... But then again, several nights ago I did have a dream where I was about to undergo the cochlear implant surgery, like being prepped for it, now that I think of it. But last night's was just whoa... It's just stuck with me throughout the day and I kept thinking about it off and on. It was realistic enough. I even woke up with a sore neck, and usually those who go through the CI surgery will have a sore neck for a couple of days just from their head having been turned to the side so the surgeon can make the incision behind the ear... Yeah, real weird.



Anyway, finally sent off that request letter to the Meningitis Angels organization for the $250 for the CI evaluation. The founder of the organization emailed me, and told me I should write a request letter, so ok I will. So I wrote the letter on July 2 while I was at work (mom thought I was nuts that I would even do this at work but hey, I get bored!) and finally sent it off today.

rambles

the founder of the Meningitis Angels Organization emailed me and told me I should fill out a request form for $250 for the cochlear implant evaluation. I'll have to get that sent in SOON, since they only help those that are 21 and younger with grants or whatever help they need after having had meningitis. I turn 22 in September, so yeah. Better get on it. But I am dead serious on getting a cochlear implant if I'm a candidate for one. I know my mom's still leery of the idea, but... I don't want a "cure" and a cochlear implant is not a cure. I know, it may not even work for me. But I won't know until I find out if I'm a candidate and go through the process. And I know that it takes time for an implant to work, for one to be able to hear and understand with an implant. I know that. I've talked to different people that have implants, and I'm even friends with a woman who had been implanted at 2 different times but both times the implant didn't work for her and left her with half of her face paralyzed. But that was YEARS ago when she got the implant and replaced implant, when they were still "new". Now that I know how much an evaluation costs from the Rocky Mountain CI Center in Colorado (I've heard good things about that center, have a friend who was implanted there and had good things to say, and a woman who was an audiologist at the deaf school here for YEARS even knows of that center and recommended it), well, now I want to get going. At LEAST go through the evaluation and find out if I'm a candidate or not. And I'll keep bugging the top editor at work about more hours/work for me, so I can be eligible for benefits and find out more about Lee Enterprise's insurance policy.

late night thoughts

I just talked to my mom tonight while we were having dinner, and mentioned to her that I had emailed an audiologist in Colorado, asking for an approximate cost for an evaluation. Explained to her that if I could get evaluated, and actually be TOLD if I was a candidate, that we could start looking into assistance and insurances. I know the CNI.org offers CI coverage assistance, but you have to be an actual candidate when you apply, which I told her of. So hopefully, we'll somehow get down to Denver so that I can be evaluated and we could go from there. Even with the CNI.org's CI assistance program, they only help with the CI components (if I remember right, from reading about this assistance program, the implants are "donated"?), not with the hospital/surgery bills, so that would leave about $15,000. But $15,000 would be better than $50-70,000.

I guess I just brought it up to her tonight to let her know that I was still serious about wanting an implant. I know, it's very costly and a major step, but I just feel that an implant would do be better. And if my left ear could be implanted (I have absolutely no hearing at all in my left, haven't heard a thing and hearing aids have been no help), that might make a HUGE difference for me. With only 1 working ear (when it's turned on), I have no sense of where the sounds are coming from, and it drives me crazy. I literally go around in circles looking for the source of the sound, and most of the time I never find it. But I do know that there's a very good chance of ossification in my ears... as is common with meningitis. But how much there is, I have no idea. I don't even know if the ossification is a factor as to why I cannot hear a thing out of my left ear or not. And I know it's more common to implant the "better" ear. There are days when I think, "oh the left ear should be implanted, then I could hear out of both ears" and other days when I think "no, it should the right ear... I've always been able to hear out of the right ear, and the implant would probably work even better in the right ear."

In a way, I feel like my mom still wishes I would WAIT until technology is so much better, like when the implants can be completely hidden away, or the hair cell regeneration. I know she'd rather I wait for the "cure". So many times I've tried to explain to her and she says she understands, I don't think she does. I don't want to be "cured". I do not ever want to be 100% hearing. I like having the choice of when to be "hearing" and when to be deaf. A very good friend of mine, who also happens to be deaf (she says she probably won't be a candidate for a CI since her hearing aids work SO incredibly well for her and she gets so much benefits from them), she completely understands where I'm coming from with this, so it's just easier to talk to her about the implant. I try to talk to my mom about it, but I just get the feeling like she wants something completely better for me. And I can understand that, she's my mother and she'll always want what's best for me. But this is my life, I'm 21, turning 22 in September, and I know what I want and don't want. My dad, he knows I want an implant, and he says he'll support whatever decisions I make regarding this.

There's also the fact that if I am for sure a candidate, there'd be a lot of traveling involved throughout the process. There are no centers in Wyoming, and Colorado would be closest. And I have heard really good things about the Rocky Mountain CI Center in Denver, so I'm awaiting to hear back from RMCIC from someone about the cost of an evaluation. There would be the issue of "who would drive me to Denver and back?" I'm not comfortable driving myself to Denver, so I would need someone else to do the driving. And flights are just too expensive and pointless.

I also mentioned to my mom that I'm seeing my new audiologist next Thursday afternoon to get a new earmold made, and to get some adjustments done to my hearing aid. She got to telling me that I should ask her if she knew anything of the new hearing aid that my mom had come across as an ad in the newspaper. Right now, I'm not interested in a new hearing aid. I have a powerful digital hearing aid that I'm happy with, it just needs to be tweaked with a bit to make any difference to my hearing. Can a hearing aid really actually "zoom" in on a voice, like the ad claimed the hearing aid could, and actually automatically filter out what is noise and voice? It just sounds like this hearing aid is "too good to be true" in my mind. I currently have Phonak's Supero 13AZ hearing aid, which I have been very happy with for the most part, it just needs to be adjusted every once in a while. I also told my mom, before scoping out new hearing aids, lets at least do the evaluation and find out if I'm a candidate first. If I'm not, then we can consider looking at other hearing aids, but until then, I'm not going to worry about it. Not until I know for sure if I'm a candidate or not.

my first article for the Star Tribune

Deaf alumni share memories at weekend reunion
Editor's note: Star-Tribune community news desk clerk Meghan Watt attended Wyoming School for the Deaf from 1991 to 1998, and says if it weren't for this school, she wouldn't be who she is today. She attended the school's reunion this weekend in Casper and wrote this report.

It has been 50 years since the Wyoming School for the Deaf started, and former students and staff decided to celebrate the 50th anniversary by having a reunion. The reunion started on Friday in the gym at the Wyoming School for the Deaf building, with everyone socializing for the majority of the day. More than 50 participants arrived, and stories and memories were shared of the days spent at the school.

The reunion continued on Saturday with even more socializing. There was also a “Guess Who” photo contest, where everyone would look at old photographs and guess who was who. Money was given as prizes to those who guessed the most correctly. In the evening, a banquet was held in the School for the Deaf gym, in which speeches were made and a deaf mime Billy Carwile did skits in between presenters. Some of the presenters included Kathleen Holmes, the coordinator for the reunion, Thelma Holmes, a mother of two deaf kids and Mary Mayes, a retired teacher of the deaf. Everyone who attended were anxious to see former principal of many years, Norm Anderson. He was unable to make it, but did write a speech, and a former student was able to make the speech for Mr. Anderson. At the end, old films of the days at the School were shown.

Sunday was such a warm and beautiful day that a picnic was held outside at Huber Park. AEveryone enjoyed burgers and hot-dogs for lunch. Group photos were taken, and addresses and numbers were exchanged with promises of staying in contact with one another. In a way, everyone who attended the School for the Deaf throughout the 50 years is part of the “family." It didn't matter how old one was or when someone graduated, he or she is part of the family anyway.

The last reunion was held 25 years ago. This year, the reunion committee decided that a reunion should be held every five years. With the participants' opinions and votes, the next Wyoming School for the Deaf reunion will be held in July of 2012 in Cody. The committee will stay in contact with one another via emails and video phone as they plan for the next reunion.

Before the school started, former students said, many parents wanted to keep their deaf children close to home instead of sending them to an out-of-state school for the deaf. These parents banded together and decided they would do what they could so that their deaf children received the education they needed. A program for the deaf started in the fall of 1957 with two pilot classes, one in Sheridan, and one in Casper. The next year, the Sheridan class joined the Casper class, with another class added on at the new East Junior High School. By the third year, a group of Casper businessmen purchased a house across from Pineview Elementary and rented it to the state. Classes were held in this house for three years. In 1961, the legislature appropriated $250,000 so that a new school building could be built adjacent to Pineview school so that the deaf students could be integrated with hearing students whenever possible. On January 3, 1963, the staff and students moved into the new Wyoming School for the Deaf building and deaf education continued.

The Wyoming School for the Deaf was an oral school at first, school historians said. Deaf students were taught how to speak and to lip-read. Sign language wasn't accepted in those days, and many thought the students would be better off learning how to speak. Since these students were constantly being taught how to speak, one teacher, Rod Laird, did everything he could to keep students motivated.

Since speech training was so constant, tiring and boring, Mr. Laird made his classes fun and interactive by taking students on field trips and doing various experiments and activities. This kept the students motivated and taught them that learning can be fun.

By the late 1980s, total communication was adopted by the school, in which students would continue speech training and also learn and use sign language at the same time. Signing Exact English (SEE) was the sign language that was used. SEE is strictly based on the English language, and ASL is not.

The Wyoming School for the Deaf remained open until 2000. By 2000, there were very few deaf students left at the school, and the State of Wyoming felt like the School for the Deaf was no longer necessary. Currently, part of the School for the Deaf building is used as a library and resource center. Many of the former students and staff expressed disappointment over the building not being used as a school for deaf children. Most feel like deaf children would do better if they could attend the local School for the Deaf.

This reunion was a pretty special weekend for the participants. A great time was had by all, and they all left with wonderful memories. Most hadn't seen one another for many years and were really glad to come and see everyone.

Mary Mayes enjoyed teaching these former students, and she mentioned that being at the reunion made her teaching career worthwhile after seeing how well many of the students had turned out.

deaf school's 50th reunion

Well today was interesting. Got up close to 10:30, got ready, and mom and I left for the deaf school. We registered, and immediately my mom was feeling lost. So she went to the deaf school library to visit with Jo while I stayed at the gym to visit with.... people I didn't know of. I only knew very few that showed up, most of them I had never met in my entire life. But it was just fun and interesting. Fun to watch everyone interact with one another and such. After a while I went to the library and bugged Mom and Jo. Mom left to get her cell phone, and ended up going to lunch with Rob. Turns out they weren't serving lunch at the reunion (and looking at the schedule, you would think they were!). So then mom came and took me home, then went to the flower shop to help with the flowers for Craig Thomas' funeral. I had some lunch, let the LinCare guy in to take away the oxygen machines and whatnot.

Then went back to deaf school to the library, to find Jo and a woman, looking up phone numbers and what not. Turns out Jo was talking to someone at the Casper Star Tribune about doing an article about the reunion.... Well, with it being Thomas' funeral tomorrow, and since it was such an incredibly short notice as well, they weren't sure if they would be able to send a reporter out to interview and such... So I actually jumped in and told Jo that I could possibly do it. So I pulled out my Sidekick, and sent Sallyann an email. Sally forwarded my email on to Barbara (this was who Jo talked to on the phone), and Barbara replied, saying it would be great if I could do the article. So she gave me a list of what the article should include, and that they want to publish it into Monday's papers.

By this time, I was excited about having been given the opportunity to do a report. Makes more sense to let a deaf reporter do the report about the deaf school reunion.... That way, the reporter can get the quotes directly without interpreters getting in the way, and have a better understanding of why this or that was said... There was 1 thing Barbara wanted me to mention for the article, and at first I couldn't make sense of it. So I shared it with Jo, and she was able to explain it to me. Are deaf school reunions different and more special than hearing school reunions? I had no clue, but after talking to Jo, it makes sense now. Yes, they are different, and the deaf school reunions are also more special too, in a way. I'll have to see how I can word it in the article so that it makes sense for the readers.

So now I had my own pad of paper (Jo gave me one to use) and started taking some notes. I haven't done any interviewing today, but I have tomorrow and Sunday to interview random people about their experiences at the deaf school, why they went to WSD and how that experience has helped with their lives, or something like that. I'll even interview former teachers as well, since some of them did come. And more people are expected to arrive tomorrow (some couldn't make it today cause of it being last day of school and all).

I'm really excited! Got to talk to people I never met before (ok, signed with), saw some that I hadn't seen in a LONG while (like oh.. E.B.).... yeah, it was great! I loved it today, I really did.

I'm anxious for tomorrow now. Megan C. should be there, and Josie as well.... Ooo! And if Janine and Mrs. Ratcliff are there, GREAT! I'll be able to share my reporting news with them. I know they'll be really happy. I mean, Janine and Jo both worked so hard to teach me English.... Out of all of my classmates (those that were in the same grade as I was)... I was the only deaf student to be at normal or advance level, the others were behind (even those that was 1 grade ahead). I mean, I remember starting on 6th grade english the last month or 2 of fifth grade, and it was Jo that tutored me. They both really did everything they could to make sure I learned and understood. So I know Janine will be really pleased to hear that I'm doing my very first newspaper report. I've been with the Star Tribune for 6 years, and finally I have that opportunity to do a report!

So on Sunday, I'll probably leave the reunion a bit early (everything should end by 4ish) and head out to the Star Tribune to write the story, so that they can run it in Monday's paper. And hopefully Barbara will be there too, just so I can bug her if I had questions about whatever. This is my FIRST article for the newspaper, EVER. It's a pretty big deal to me. And I want it to be as perfect as possible.

deaf does NOT equal mute

Well well well. What do you know? My mom just told me something today, after I got home from work. We just got to talking about this and that, and my upcoming vacation, what's been going on at the Tribune, stuff like that. Turns out when Mom talked to Megan Moore on the phone the other day, Megan mentioned how she thought the editor, Clark, was an ass for not talking to me or something like that. Turns out she was the one who went to him and told him to TALK to me, that I'm easy to talk to and all. I had no idea Clark didn't know how to talk to a deaf person like me. I've worked at the Tribune since I was a sophomore in high school... And Clark's been the editor for a couple of years now, maybe a bit longer. And all this time he had absolutely no idea of how to talk to me? Wow, I'm amazed. The previous editor, Dan, he never had any problems. I remember he was always stopping by to check on me, or to make small talk every now and then. Clark, whenever he walked by, he would always just smile and wave at me. Also, it turns out that there are many others at the Tribune that are afraid to talk to me.

So... what to do about this. Hm. I should put up a list of how to communicate with a deaf person at my desk or something like that. I don't know, but these people need to be educated. Deaf does NOT equal mute. Deaf people are perfectly capable of communicating with ANYONE. Some may use only sign language, some can lip read, some can hear a bit, and then there are some that have to write notes to get his/her message across. Everyone have their own way of communicating. But really, it's not that hard to communicate with deaf people. Just talk to them like you would with a hearing person. Speak clearly, don't mumble, and please, do not raise your voice. Raising your voice will not make a difference.

I'll have to see if I can find such a list online, and I'll talk with Sally or Megan about this, and see if we can come up with a solution. I don't want anyone to be afraid to talk to me, I'm not different from anyone else. Sure, there will be times when I misunderstand or didn't catch everything that was said, so I'll ask the person to repeat. But hey, plenty of hearing people miss something that was said too, that's a normal occurrence.

I do remember having this orange bookmark quite a while ago, that had a Do and Do Not list of how to communicate with the deaf. This was probably years ago when I had one of these. I'll just have to look online and see if there's anything. I should also mention that if my hearing aid is hanging off my hear (instead of being behind my ear), that means I cannot hear what is going on around me (either the hearing aid is turned off, or I'm listening to music with my FM system, and I always have the hearing aid hanging off when I have the Fm on cause it's a bit of an extra weight that my ear can't handle too well). But all it takes is a quick switch and I can hear again, if someone needs to tell me something. No big deal. (I usually have to be deaf or have music playing at work, otherwise I hear all the electrical sounds going on in the building, from the lights and the computers, and those noises do give me a headache and I can't just block them out with my noise adapt setting).

I'm even considering writing a letter to the editor.... EVERYONE should be informed of how to communicate with a deaf person. Not just co-workers or whatever. EVERYONE should know. That's something to think about while I'm on vacation.

hoping he comes

With the deaf school reunion in June... I contacted a deaf friend of mine on Myspace and asked him if he knew of it. He didn't, so I emailed him the information. Hopefully he'll be able to make it. It'll be really nice to see him again. I haven't seen him since he came to town to visit his brother, and that was years ago. Might've been when I was in middle school. We used to be really good friends at the deaf school, so yeah. I really do hope he can make it. It's always nice seeing old friends again.