Tango, cycling, & technology...from a Portlander.

I've been promising a status report on my current hearing aids for months, and now that a full year has elapsed since my initial review...I've run out of excuses The next few blog postings will detail three primary points:

The current status of my hearing, and attempts to mitigate a fairly recent profound loss.

Recent experiences using technology to help mitigate the loss.

An "outsiders" view of the hearing aid industry.

To immediately address one major point; there are two major types of hearing losses. A conductive loss is what you experience while fighting head colds, and while there is often a comparatively-mild impact on the quality of sounds you'd hear, a conductive loss largely impacts the quantity of a sound, not the quality. A sensorineural hearing loss is a totally different experience; it involves a reduction in the ability to hear certain frequency ranges, which significantly impacts communications by affecting speech comprehension accuracy, and the loss of an ability to process certain frequencies extinguishes the ability to perceive the related sounds. In-effect, a sensorineural hearing loss hinders the quality, not quantity, of a sound. To better understand, see this illustration.

One major point I intend to make over the course of the next few postings: Phonak's claim that their Phonak Naida V UltraPower hearing aids are water-resistant is, without any doubt, wholly-false. Once you get beyond, and accept this indisputable fact (which I'll clearly document in the next posting), they're not bad little gadgets. Though their false advertising has significantly hindered my ability to enjoy liberties that many otherwise take for granted...and has done so at a great financial and emotional cost.

How sad...

My numbers give a final value of a 102.5% loss, making my "value" to society -2.5%

Right: 93dB PTA - 25dB = 68dB x 1.5 = 102% disability
Left: 95dB PTA - 25dB = 70dB x 1.5 = 105% disability

((102 x 5) + 105) / 6 = 102.5% hearing handicap

Guess I just don't fit their molds!

Do you allow fear to control your future?

In the past 20 years, on American soil:
Nearly 3,000 have died at the hand of terrorists
Nearly 800,000 have died from car accidents

In considering the total human toll, the 9/11-based "war on terror" has:
Slaughtered over 700,000 Iraqis & 4,000 Americans
Wounded over 60,000 Americans
* Displaced over 4,000,000 Iraqis from their homes

Is this the legacy we leave for our children?

America has expended nearly one-half trillion dollars "fighting" terrorism, yet only a comparatively-small fraction addressing truly serious and tangible national issues, such as improving education, providing health care, or simply minimizing deadly car accidents. Our fear-driven reactions to terrorism only indisputably proves that terrorists are currently accomplishing their goals, and henceforth winning; terrorists seek change our way of life by inducing fear, and we're giving them exactly that.

You can help our government restore a clear perspective, and return focus to the real issues:
1) Please forward this email to everyone you know.

THEN

1) Goto this site, read, and submit the form: http://action.downsizedc.org/wyc.php?cid=77
or
a) Obtain your representative's email addresses from these sites:
http://www.house.gov/writerep/
http://www.senate.gov/general/contact_information/senators_cfm.cfm

c) Copy/paste and send the below message, plus any additional comments,:
"...
I am not afraid of terrorism, and I want you to stop being afraid on my behalf. Please start scaling back the official government war on terror. Please replace it with a smaller, more focused anti-terrorist police effort in keeping with the rule of law. Please stop overreacting. I understand that it will not be possible to stop all terrorist acts. I accept that. I am not afraid.
..."

Interesting article, from a very well-known and well-respected security expert.

Thanks for helping save lives; by refusing to be terrorized you deny the terrorists their most potent weapon -- your fear.

I am not afraid!

Alright, I feel left out; I need an iPhone blog entry.

First, I'm selling my 8GB iPod Nano; it's about 4 months old, and still looks and works great, but it's now redundant. I'll part with it for $175 (OBO), if you're interested, email me: berkholtzNO-UCEgmail.com replace the NO-UCE with an @

While checking out the iPhone, I discovered two things, which of-course finally pushed me to grab one:
1) The iPhone is, by far, the best mobile phone for hearing aid and cochlear implant users.
2) Using a DAI cable is tricky, but doable, and well worth it.


While reading this, keep in mind that most hearing aid and cochlear implant users simply cannot use the headsets, earbuds, and/or hands-free kits available (or even included) with today's portable electronic devices. Largely because the included headsets/earbuds/hands-free kits are simply not compatible, extremely uncomfortable, or are simply ineffective (ie: not loud enough without hearing aids amplifying sound as well). Instead we're forced to purchase expensive Direct Audio Input (DAI) equipment just for "basic" functionality that regular-hearing folks take for granted.

Speaking of costs though, there is a possible way to offset it; see my HSA comment at the bottom of this posting.

To elaborate on the iPhone... When a call comes in, and you have a "headset" connected, the audio is routed into the headset instead of the phone's built-in speakers. For DAI users, that means a DAI audio feed from your cell! The iPhone still uses its built-in mic, but everyone I've talked to can hear me fine even with the phone at chest-level or resting on a table. For DAI users, that means we finally get a hands-free "kit" that works great with our hearing aids and cochlear implants; I don't know of any other phone on the market that does this (I had to hack a cable together for my last phone).

As for using an DAI cable. The Connevans attenuated stereo DAI cable doesn't work too well, though Hearing Loss Help Co's unattenuated stereo DAI cable works great with a slight modification. The modification is not actually necessary, see below for the modification details. See my May 6th entry for more details on these cables, including sources and a review.


As for the headset jack modification. It's now a well-known fact that the iPhone headset jack is recessed, largely to reduce the strain on the headset plug. Though the jack is so recessed, it has the side-effect of:
1) Requiring an adapter (which I hate hauling around/losing)
2) Forcing you to use an "iPod" headset (which simply doesn't work for me - given my profound hearing loss, it simply cannot get loud enough).
3) Encouraging me to modify the headset plug on my DAI cable.

I obviously choose option three, as the other two are simply not options for me. I use a "Hearing Loss Help Co's unattenuated stereo DAI cable", but at first it would not fit into the iPhone. The solution is simple; cut off the excess material, and it fits great. I had to cut off roughly between 1.5mm to 1.75mm. These cables are so well-engineered, that there was no negative effect to cutting the excess material off; its still as sturdy as before, and works just as well.


Sorry for the poor picture, I'll post a better one tonight.

As for HSA account holders:
The standard disclaimer applies; this is not legal advice, do your own research, and consult with your own legal sources before proceeding. Though as for me; my HR rep, and my reading of the IRS publication 502 rules both tell me that some hearing aid accessories can be legally charged to your HSA account. Accessories such as the ELI Bluetooth adapter, and DAI cables that one uses for connecting to a TV, or phone, are possible examples. See page 13 under the sections "Telephone" and "Television" of the IRS 502 rules for details. This effectively means we can purchase our hearing aid accessories with pre-tax dollars (well, those of us in the USA). Personally, I paid ~$132 for my DAI setup (two audio boots - one for each hearing aid, and one "Y" DAI cable). The HSA account usage is a nice way to offset that high cost of "basic" functionality that regular-hearing folks take for granted.

Ever since I purchased my iPod back in February, I've been struggling to find a way to actually use it. Since I wear hearing aids, I cant use the included fancy white earplugs; the sound generated is not even audible to me, even with the volume turned up all the way.

First I started with the inductive neckloops and earloops that I've always used. Though they required I turn the iPod up all the way, I got the typical buzzing background noise, and even with the volume cranked up - I could barely hear anything. So I decided to start seeking out Direct Input Audio (DIA) cable options. DIA enables someone to plug their hearing aids directly into the audio equipment, instead of depending on RF inductance to transmit the signal to their hearing aids.

Finding a monoural DIA cable was easy, but I wanted that stereo sound. Both because music sounds so much better, and because I cant understand speech without it. So I needed a stereo DIA cable, after quite a bit of research, including tapping the folks/resources in the Hearing Aid Hacking group, the only cables I could find were:
1) Connevans attenuated stereo DIA cables
2) Hearing Loss Help Co's unattenuated stereo DIA cables

Both cables are pictured here, the Connevans is on the right (click on the image to enlarge).




Both cables have been tested with two models of hearing aids:
Starkey DaVinci PxP, with the boot's attenuation disabled.
Phonak Supero 413AZ, with AS4 and AS4-MLx audio boots.

I started with the Connevans cable, as Hearing Loss Help Co's product wasn't even for sale yet (though it's available now).

The Connevans cable is well-manufactured, though a bit cumbersome and bulky. The fact that there is an entirely separate cable run to each ear significantly contributes to the cumbersome aspect of the cable. The material used is a bit rubbery, and tends to stick to the skin; making it difficult to wear under a shirt or even let sit between a shirt and coat. The difficulty largely stems with the fact that the cable tends to rub between materials and then cause a great deal of tugging on the ears. The attenuation is also a major issue, as sounds are barely audible, though keep in mind that I use the market's most powerful hearing aids, which are also maxed out in terms of amplification levels - yes, my hearing is that bad.

Hearing Loss Help Co's cable is like a slice from heaven. The cable material is thin and slick, like the iPod cables, though black in color. Despite its thinner size, the cable still feels very strong. In addition, there is a "single" cable running between the plug up to almost the ear. Near the ear, the cable connects to a unobtrusive "Y" splitter, and a separate run goes to each ear. The "Y" split was placed well enough that even the "largest" of folks should be able to use the cable without issue. The fact that the cable was not attenuated made things even better; I can set my iPod volume at about half-way, and everything sounds great. The 3.5mm plug, which connects to the audio player's headset jack (click for an image), is also smaller and less obtrusive than the Connevans cable. The euro-plug (click for an image) is also smaller and less obtrusive on the Hearing Loss Help cable.

Since Connevans has no US presence (as confirmed with Connevans), your option for obtaining Connevans cables is shipping directly from the UK. Connevans charges a minimum rate of roughly $50 (actually it's exactly £25), and blames it on international shipping charges - though the postage on the delivered package was clearly only a fraction of £25... In-fact, I've shipped things from the UK many times, and was never faced with such outrageous shipping charges for something so small and lightweight. Delivery time was about one week.

Shipping with Hearing Loss Help Co was a breeze; the package was delivered in just a few days, and shipped at a reasonable rate (yes, it fairly matched what was on the delivered package).

While both cables give that true stereo sound, I strongly recommend the Hearing Loss Help Co's cable for its more thought out, and ultimately minimalist, design. These folks are also very pleasant to work with, and I've done business with them a number of times; I recommend them without hesitation (something I rarely do).

Finally, if you must use attenuated cables, then I believe Connevans is your only choice at this time. Though I am personally looking to sell the three Connevans cables that I have, email me at gmail.com (berkholtz@...) - address obfuscated to trick spambots. So please contact me if you'd like to save on an outrageous shipping charge for attenuated cables. If you can wait a while for attenuated cables from Hearing Loss Help Co, they are very responsive folks, and I believe with enough encouragement they will manufacture and sell attenuated cables someday too; so send them an email.

Over the past few months my hearing has profoundly worsened, a fact I was finally able to officially confirm in February. If you have a hearing loss, you're already in touch with how much it can minimize and/or eliminate your ability to engage in causal conversations. Now imagine a loss profound enough to take both most verbal communications away, and your ability to appreciate most music. Hearing can disappear slowly, or overnight, due to an illness, accident, the progression of a birth defect, an ototoxic medication like some antibiotics and anti-inflammatory drugs, or even listening to an iPod or stereo too loudly for too long.

I'm seeking your assistance to call attention to a bill which has already passed the Oregon State Senate, and will soon be before the House. This bill promises to help me and many others with a profound hearing loss restore a certain level of sound, speech, and music perception. Through support of a medical procedure known as a bilateral (ie: two ear) cochlear implant.

Senator Deckert of Beaverton has sponsored SB 491 (http://landru.leg.state.or.us/07reg/measures/sb0400.dir/sb0491.intro.html). A bill "Relating to insurance coverage of bilateral cochlear implants; creating new provisions; and amending ORS 750.055 and 750.333". I urge you to review the details below, and consider contacting your senator in support of this bill. You can find your legislator here: http://www.leg.state.or.us/findlegsltr/

Further details regarding cochlear implants and SB 491:
1) This bill "...Requires health insurers that provide coverage for cochlear implants to provide coverage of bilateral cochlear implants...".

2) Cochlear implants are essentially a bionic, or implanted, prosthetic substitute for hearing aids which help the profoundly hearing impaired (ie: deaf) hear when regular hearing aids can no longer help. They are a technology which has been in use since 1969, and FDA-approved since 1984 (see: http://en.wikipedia.org/wiki/Cochlear_implant ). As a mature technology, with well-established FDA guidelines for use, cochlear implants are the only technology which exists to help the profoundly hearing impaired/deaf hear.

3) Each implant can cost upwards of $80,000, and one is needed for each ear in order to provide the greatest benefit for the patient, many do not have the resources for such essential and expensive medical treatment, so they depend on insurance and government assistance.

4) Many insurance companies only provide coverage for one ear, under the guise that two (ie: bilateral) implants are an experimental procedure. This is akin to telling someone who needs a hip replacement that they'll only have one hip, instead of two, replaced. Bilateral cochlear implantation has been an accepted, mainstreamed medical practice since 1998. Over 3,000 implantations have been performed, including over 1,600 on children. (source: http://advocacy.letthemhear.org/research.php ).

5) Bilateral implants have proven to provide a greater quality of life for thousands, by enabling improved verbal/auditory communication over monaural implants, and by giving the ability of sound localization, and greatly improved speech recognition - things people with normal hearing take for granted.


My personal motivation behind this, is that I now have a profound hearing loss. This congenital sensorineural loss was "steady" between 60-70dB (moderate loss) for roughly 15 years prior to around August of 2006, when it suddenly dropped. In Feburary of 2007 it dropped again (to a 95dB bilateral loss), placing me now in the "profound loss" category (the most severe ranking possible).

Bilateral (two ear) implants are critical for folks like me; While cochlear implants are a mature technology which has been around for over three decades, they're still imperfect. Modern implants have at most 24 electrodes to replace the 16,000 delicate hair cells that are used for normal hearing, and the "sound" of human voices perceived through implants has been compared to robotic voices with laryngitis. Given such "limited" capabilities, bilateral implants would be critical for some folks to restore a reasonable level of speech comprehension; a capability essential for functioning in the "hearing world".

Your time and consideration are greatly appreciated.

I cant even begin to tell you how frustrating it is living in the "hearing world" with a profound hearing loss. Up until recently, my loss was only rated as "moderate", and that's essentially what I grew up with - I think I coped pretty darn well, for someone who can speak without noticeable speech impediments, and is happily 11 years into their chosen career!

Effective around 6-9 months ago, my loss shifted near the profound category, and then shifted clear into "profound" around January of this year. While I thought I "understood" a hearing loss then, boy...let me tell you...that's nothing compared to where I stand today. Now I fully understand why some folks would prefer to be blind than deaf, and while I'd still rather hike in silence than impale myself with a blind-cane as I stumble off a steep trail, living in the "deaf" category is no cake walk.

As with most folks, their livelihood depends on regular verbal communications. Before, this required some extra communication effort on my part that was tiring but manageable, but the now-greater effort exhausts me roughly half-way through the day; I just want to go home and shutdown in silence for a while, thank god for mass transit; at least I can turn it all off on my trip home.

Most verbal communications now require the person speaking to me to repeat themselves at least once; very rarely do I catch what was said the first time around anymore. This has got to be frustrating for some folks, though imagine being on my end! Argh! Take for example, the company party yesterday, it was only about 15 of us, and we're not that noisy, though I could barely understand what anyone said; usually just nodding my head and pretending. You can just see the frustration and irritation on most folks faces, and how often can you interrupt a group discussion before you get shut out...experience has taught me that most folks will give up and avoid talking to you; something I'm seeing more and more of lately.

Sigh... I think I've got a lot to write about. Hearing loss in particular, and how my recent onset of "recruitment" coupled with the "profound" shift is really doing a number on communications. While I'm quite frustrated with my communication issues, I'm still happy about many things - so at least I've got a few other things going for me

Lunch is over, so maybe tomorrow...