A Hearing Loss & Late Deafened Blog

A Place in the World

In Deaf Culture, Deafness, Hard of hearing culture, Hearing Loss on October 8, 2015 at 12:13 pm

by Michele Linder


My husband and I moved to Germany a few years ago, and I was looking for a light-flasher for the doorbell of our flat. I researched online and found the address for the GMU, the Deaf Association in Munich, hoping to stop in for a recommendation from them on what I could get in order to hear (see) my doorbell.

On a day when I was out and about in Munich, I made my way to the GMU office. I’ll spare you the long story of the hour or so I was there simply trying to get someone to steer me in the direction of equipment that would fit my needs. What I will tell you, I was made to feel less valid because I didn’t know and use sign language.

After much back and forth, I finally lost patience, and said “I lipread, I use my voice, and I can’t hear my doorbell. You don’t speak, you use sign language, and you can’t hear your doorbell. What kind of equipment is available in your country in order for you to hear your doorbell?!!”

Sometimes in life we get hung up on the differences between us and can’t see our way to step over into what unites us in order to help one another.

Anyone who is Deaf, deaf, deafened, partially deaf, partially hearing, hearing impaired, hard of hearing, has hearing loss, or whatever else you choose to label yourself, or not, cannot take in sound in the traditional way, and that includes speech, so we compensate. We choose to hear in different ways, and that’s okay.

Someone who is hearing uses their ears. I hear through lipreading and captioning. Those who are a part of the Deaf Community hear mainly by using sign language.  Others might use Cued Speech. Still others might use a combination of any or all of these modes of communication.  We do it how we do it.

What I’m saying is, many of us consider hearing as communicating, and sometimes it is simply about the information, not the way in which we receive the information, so “Chill out!”

No, not everyone I’ve encountered in the Deaf Community has a need to differentiate themselves from others with hearing loss, but I’ve had similar encounters in the U.S. and I see a lot of division online.

That said, I do realize how hard the Deaf Community has had to work to establish their place in the world–I respect that effort and know I have benefitted from it–and most likely that necessitated their defining and distinguishing themselves repeatedly.

However, those of us with hearing loss, who are not part of the Deaf Community, have also had to work hard to establish a place of our own and to be included.  I would expect one group desiring inclusion and accommodation to be a bit more sensitive to a similar group who desires the same thing.

It may seem a bit pollyannaish, but wouldn’t it be nice if energy used to distinguish differences–when it isn’t necessary–was used instead to recognize similarities and to practice inclusion?  Just a thought…

Really.  All I wanted was doorbell flasher.

SWC Tech Corner: The Roku Revolution

In Assistive Listening Devices, Deafness, Hearing aids, Hearing Loss, Technology on August 30, 2015 at 4:40 am

by Brian Storms

I am an avid appreciator of many things tech.  I grew up watching my father piece together computers in our basement made up of spare parts.  While I clearly recall the day my father brought home our first Commodore 64 home computer, much of the rest of childhood memories are cloudy.  My parents both had record collections, and our home had more than one stereo system, including an old reel-to-reel tape deck.  In college I majored in engineering, listened to a lot of loud music, and worked at the college radio station.  I currently have 3 5th generation Ipods on desk.  One works. 

For a while, I had my grandfather’s 1971 Dodge Coronet, a big old boat of an American car, with a V8 engine.  I loved that car, but it came with a single speaker mounted in the dash, above an AM radio that must have weighed 20 pounds.  I installed a stereo and four speakers, at times lying on my back in the gigantic truck, cutting holes with a jigsaw in the rear shelf.  That car had a CB radio my Dad I put in, too. 

I have never been the first to go out and get the newest thing, I am more of a late adopter – watching with fascination as my friends discovered Ipods and I kept the cassette player in my car alive.  Finding old Pioneer receivers, or turntables, or other gizmos, and trying to restore them, or even just understand how they work.  I am a curious amateur, and thanks to the Internet I know I am one of many.  These days, if I don’t understand something, I tend to google it (though I know and love my local library as well)

I come from a family with late onset hearing loss on my mother’s side.  My mother got her first hearing aids with a late diagnosis at the age of 39.  As I past the age of 30, I began to notice, as I exposed my ears to more and more loud noise, that the tinnitus I had wasn’t going away.  When I was 33 years old, my hearing seemed to drop off rather quickly, and I began to wear hearing aids.  Of course I was unhappy with my new disability, and a bit overwhelmed in most of the environments that I had been so comfortable with before – social situations, loud concerts, group conversations…isolated in a crowd.  But by wearing hearing aids, I also realized I was entering into a lifelong direct-dependence relationship with another form of technology.  Almost six years later, I still feel like I am just beginning to understand it.    Unlike home audio, cars, or apple products, there are not a ton of resources out there to help the end user really understand, adjust, or even utilize the full scope of the technology that comprises a hearing aid system today.  Don’t get me wrong.  There are many resources available.  But beyond basic operation, much of what I want to know seems blocked by a “consult your audiologist” statement.  (One great site I have found is http://www.hearingaidforums.com)

What I did learn quickly was the limitations of my hearing and the aids that I was wearing, as well as the occasional, slight, advantage of them.  Hearing loss, for me, seems to be both a problem in my ears, as well as a problem in my brain.  I can’t hear sounds as well, sure, but more so I can’t process and differentiate the sounds that I do hear.   I have trouble sorting words from words, or keeping track of a few different voices of various tones in a conversation, or making out the dialogue in a movie, or the lyrics in a song.  When I mention this to my hearing friends, they often relate with similar experiences, but in loud situations only.  In that, I am sometimes thankful for my hearing aids, when it is too loud I can turn the sound off, or set a program that uses directional microphones and software to capture and amplify the voice of someone I am speaking to, while filtering out and lowering the background noises.  Utilizing daily practice, three programs (Directional mics, omnidirectional mics for all sounds, and a music setting) and volume controls, I did as much as I could with the hearing aids to improve my aural understanding of the world around me.  Of course, during the first year, I continually recognized the benefit of having hearing aids.  Hearing birds again, participating in conversations, listening to my own footsteps, my own voice.  But in time, I began to take what I had already for granted, and to see the limitations, and to see question what else might be available out there to technologically assist me in the audible aspects of life.   

I recently went through the process of getting my second pair of hearing aids.  It had been five years since I first got my Phonak Certena aids, with advice, guidance and financial assistance from a great non-profit, the Hearing Loss Association of Greater Baltimore (http://www.hearinglossbaltimore.org).  With no experience, my first aids did wonders for my hearing, which is what they are supposed to do.  But when I was told that I could also purchase an accessory necklace gizmo with Bluetooth streaming capability, the cost, combined with incorporating another device while learning how to live with my aids, stopped me.  It was 2009 and I didn’t even have a smartphone yet.  I didn’t know what I was missing in avoiding the Phonak icom.  I still don’t, actually, but I love my new aids, and I love the ComPilot (next evolution of the Icom) I got with them. 

About the time that I began to consider upgrading my hearing aids, I had also begun to think about how I might be able to benefit from some sort of accessory that would allow me to listen to music, or perhaps watch movies with less dependence on the captioning.   By then, I had a smartphone, and I had been using an Ipod for years (having even opened mine up, many a time, to replace a cracked screen, a worn out battery, a broken headphone jack, etc.).  I was hoping I would be able to stream music from these devices directly through my hearing aids, or even to be able to be comfortable speaking on the phone again. 

The experience of deciding on new hearing aids, how to pay for them and where to purchase them, is worth another few blog entries.  The long story short is that I came home from Costco happy, with new Phonak Brio SP aids, a TV Link station, a ComPilot, and a RemoteMic. 

The TV Link

The TV Link base station is a pretty great device that could probably have a better name.  It, in conjunction with the ComPilot, streams audio sources to your hearing aids.  Audio sources are plugged into the TV Link base station and stream to the ComPilot you are wearing around your neck.  For many folks, the common example will be to stream sound from your TV, surround sound receiver or cable box plugged into the TV Link via an auxiliary audio cable.  The volume of the audio signal can be controlled using the audio source control or the volume buttons on your ComPilot. 

One of the major gaps I have found with hearing aid accessory technology is setting it up to work with my individual stereo systems and phones.  How best do I use the TV Link to stream my audio sources at home?  A bit down below I will detail my somewhat frustrating experience finally getting the TV Link to truly be a link to my TV. 


The Phonak ComPilot is a bit of a bizarre experience, but it has opened up familiar old worlds of sound for me.  It is a neck loop that streams (sends) audio signals directly to your hearing aids.  It utilizes Bluetooth technology or a headphone-jack size input to receive an audio signal.  Some of the ways that I use my ComPilot are listed here:

  • Stream audio signals over Bluetooth from my smartphone, including music sites like Pandora, TuneIn Radio and audio files I have stored on the phone
  • Stream phone calls directly to my hearing aids
  • With the TV Link to listen to my stereo or movies and TV
  • With an input audio cable (included with the TV link, and the ComPilot I think) connected to an mp3 player like my Ipod to listen to music

Bluetooth streaming does eat up hearing aid batteries and the ComPilot battery faster, but I am amazed at home much longer the batteries in my new hearing aids last, regardless.  Streaming Bluetooth is a little spooky, a smartphone can run many apps at once that have audio output, they will occasionally interrupt each other.  I might be listening to a baseball game and find the stream disappears so that the ComPilot can tell me that a phone call is coming in.  But the amazing thing to me is that while this is happening, I am wirelessly connected to my phone – it might be sitting on a countertop across the room from me, or in my pocket.  And it is great that Phonak has it set up so that incoming communication signals like messages and phone calls take priority. 

Streaming phone calls is even more bizarre and amazing, though not always practical.  The ComPilot necklace acts as a microphone for my voice while streaming the incoming caller’s voice to my hearing aids.  While this function has been enjoyable and useful, I find that the microphone is often picking up a bit too much outside background noise beyond my voice for the caller on the other end to really understand me well.  I believe this sensitivity level can be adjusted, but like most adjustments will require a visit to the audiologist or certified hearing aid technician. 

Using the ComPilot with an mp3 player, walkman, FM radio, or any portable audio player that has a headphone jack is relatively straight forward.  Plug the included auxiliary cable (or an aftermarket one with a headphone sized “male” plug on each end) into the ComPilot, and the other end into the headphone jack on your Walkman.  Press play, and you should be streaming the sound from the Walkman through your ComPilot and into your hearing aids directly.  Of course it works with newer portable audio players too. 


The RemoteMic is a device Phonak offers to help bridge the distance between you and a speaker’s voice.  It too streams wirelessly into the ComPilot.  It is very effective under ideal conditions, but somewhat limited in many situations by the tendency of a speaker to turn away from the listener when speaking.  If my wife is wearing the microphone and sitting down, facing directly towards me, I hear her well, even if she is all the way across the room.  The microphone will pick up background noise around her, but not in a way that mixes too badly with her voice.  At work, I tried using the microphone while completing a survey job in which my coworker traveled away from me along a line and spoke measurements into the microphone while wearing it on her lapel.  The microphone worked well, even up to 50-60 ft away from me, except when her body or clothing blocked it or brushed against it.  At that time, I could not hear her at all, because we had come to depend on the microphone.  Unfortunately, she was not aware that I did not hear her, and I had to shout to her to repeat the measurement. 

In ideal conditions, the RemoteMic is very useful.  Occasionally I bring it to my office and let my boss place it on her desk in order to speak easily to me from across the room without me having to get up to go listen to her.  But I do find myself disappointed in it’s real world performance.  It’s not necessarily the fault of the microphone here, but the microphone user’s limited awareness of how I am receiving or not receiving the signal.  Keeping in mind that it is a one-way audio signal.  My wife can wear the microphone into the other room, and I can hear her, but at times I cannot, and there is no way to really let her know besides shouting. 

How to Use This Stuff to Fulfill Your Hopes and Dreams

The title says it all.  I am happy to have the new gizmos, until they don’t live up to my hopes and dreams.  Let’s talk about my hopes and dreams for the new gizmos for a second. 

Hearing loss, to me, seems embodied in large part by the fact that I can’t hear, or more so understand, sounds that are far away from me.  Okay, just away from me.  People with strong voices, who annunciate well, I can hear and understand them from across the room.  Lyrics in a song, well that’s a different thing entirely.  What I hoped, in getting a ComPilot, is that I could stream music wirelessly, and wired, through the device and directly into my hearing aids, because that is where I hear things the best.  An extra bonus would be if I could stream audio while exercising.  Before the new hearing aids, I would occasionally try to put cup-style foam headphones over my aids to listen to music, or to my own voice speaking through a microphone.  Turns out, hearing aids really don’t like to be covered.  Feedback!

Did the ComPilot live up to expectations?  Yes.  Very much so.  It is amazing.  I can stream talk radio again, and understand most of what is being said.  I can listen to music, and if I pay attention, I can make out the lyrics to some songs I have never heard before.  There is a dog barking in my next door neighbor’s backyard right now, it is time to turn on the ComPilot to stream Itunes while I write.  I can plug my old Ipod in and stream mp3 audio content from it via a simple auxiliary audio cable.  I can go running, and wear the ComPilot around my neck, and carry my phone in a pouch on my arm, and stream music or talk or whatever audio content I want via Bluetooth.  Dreams and hopes fulfilled. 

What about the TV Link in combination with the ComPilot?  Well, my hope had been to plug the TV Link, via an audio cord, into the headphone jack on the new surround sound receiver I bought, (kind of for that purpose, plus surround sound!).   My wife and I don’t have cable, we use a Roku to stream most of our movies, TV, and baseball (Go Orioles!! Go Giants!)  The instructions that came with the TV Link indicated that the audio cable should be plugged into the headphone jack or audio signal output on your TV.  A headphone type auxiliary cable, as well as one with an RCA end (a red and a white plug) are included.  Well, my TV has neither.  I have always connected the Roku to the TV with an HDMI cable and enjoyed audio from the limited TV speakers.

I connected the Roku into the new receiver (HDMI input #1).  I connected the output cable on the receiver to the TV.  I connected the speakers.  And I plugged the TV link into the headphone jack on the receiver too.  I turned my ComPilot on, turned the TV on, turned the receiver on, and set a baseball game to play on the MLB TV app on my Roku.  It was awesome!  I could hear the announcers clearly – the poor captioning for baseball games has always frustrated me, and now I didn’t really need it anymore –  except, well, my wife had a frown on her face…I pressed the button on the ComPilot to mute my audio input, and she told me that she couldn’t hear anything.  No sound coming through the speakers.  Ugh. 

Apparently, most receivers these days will not share sound between the speakers and the headphones.  It’s one or the other.  I tried the “monitor” connection on the back of my receiver, thinking that would work, but it did not.  For other folks, it might.  The key is finding an audio output that will work when the speakers are working. 

My wife and I settled back into our routine of depending on captioning for our TV, movies, and baseball.  Occasionally, if I had the TV to myself, I would plug my TV Link into the receiver and revel in the sound being so close, so much easier to discern.  (This, by the way, was especially rewarding, late at night, watching Top Gear, hearing the sounds of ridiculously overpowered performance cars racing on the track in combination with understanding British accents and British humor…while having a late night glass of whiskey!  I know.  Amazing.  I did not think I could understand sounds like this anymore.)

As time passed, I began to realize that there had to be a way around the problem I had encountered.  One afternoon, I decided to do some deep googling.  In researching this barrier, I did find a device called a headphone amplifier, that acts as a kind of accessory driver to attach to your receiver, if you want a second option for headphones, while the speakers are going, attached to an RCA audio out connection on your TV or receiver, perhaps.  But then I read, I think on a site called avforum, about HDMI signals, and how a device that sends one usually has another option for audio and video out, that will still work when the HDMI is working (remember the simpler days when everything looked less defined on our TVs, and there was no HDMI?).  In other words, a cable box with an HDMI cable sending a video and audio signal out to a TV or home entertainment receiver might also have a red and white audio plug option (often accompanied by a yellow video out plug) that will work at the same time as the HDMI (albeit with a much lower signal quality for video). 

I took a second look at the back of my Roku.  There was no red and white plug, no yellow plug.   There was one headphone jack style plug that said “A/V Out”.  I plugged the TV Link in (many months after the initial wall was hit).  EUREKA!  Sound coming from both the stereo speakers, via the Roku HDMI output cable into the receiver, and from the TV Link to my ComPilot via the “headphone jack to headphone jack” connection. 

Did the ComPilot, in connection with the TV Link, live up to my hopes and dreams?  Yes.  It took a while.  It took patience, perseverance.  Experimentation.  It took a bit of googling, for inspiration to keep trying, at least. 

I am an amateur tech geek.  I do sometimes like to take things apart.  Sometimes, when I put them together again, they work.  I like to play around with new, or close to new, technology.   I think it is really neat and sometimes intimidating that my phone has a GPS built in.  I love old stereos.  I waste large amounts of times figuring out how to make things that are broken work.  I have undeserved faith in technology.  I fear no home audio or video component.  If something is supposed to work, and it doesn’t work, I don’t usually blame the thing.  I just figure there’s something I am missing.  Persevere.

Hearing aids, and there associated technology, present a new challenge, in that there aren’t yet a lot of people out there on the Internet dealing with small problems that we encounter, and posting in depth solutions to them.  It’s too bad, but it doesn’t mean the problem can’t be solved. 

Thanks for reading.  Feel free to post comments or questions about my experience, or your own frustrations, and I’ll try to respond.  And if you are missing music, or radio, or movies or TV sound in your life, and you haven’t tried a neckloop of some sort, I would highly recommend it.  In joining SWC, I read a lot about FM systems (different from the ComPilot and related devices from other aid manufacturers, but accomplishing some of the same) on past blog entries, and would recommend you do the same.  Or ask questions in the forums.  There are some really knowledgeable people here who can answer questions and point you in the direction of some potentially useful products. 

Meet SWC’s Guest Blogger

Brian Storms

Brian Storms

Brian joined the SayWhatClub in January of this year and always has something informative to contribute on the tech front, here’s more about Brian in his own words.

I am a 38 year old idealist with a hereditary sensoinaural hearing loss in both of my ears.  I got my first hearing aids when I was 33.  I’ve always been interested in technological things, from helping my father work on cars while growing up, to taking apart Ipods (and occasionally putting them back together), to stereos, computers and cameras.  I often waste vast amounts of my free time believing I can fix something I know nothing about.   I always learn something trying, and sometimes I succeed. 

Professionally, I am a hydrologic technician based in the coastal redwood forests of Northern California.  I work with instrumentation that monitors and records various aspects of streamflow, rainfall and channel conditions in a research watershed.  When it rains hard, I am usually out in the redwoods, hiking around and getting soaked.  It is a very fun job, and I have come to appreciate being aware of the conditions I expose my hearing aids too, the implications and how to deal with them. 

In my other free time, I enjoy the outdoors, spending time with my wife and our dog, reading, gardening, cooking and writing.  I hope to do more of the last bit, sharing the experiences I have with hearing aids and hearing loss.  I have little to no training in solving technical problems, but I try. Thanks for reading.  Feel free to post comments or questions about my experience, or your own frustrations, if I can help, I will. 

Working on the Radio

In Employment, Hearing aids, Hearing Loss on August 17, 2015 at 11:28 pm

By: Sara Lundquist 

I recently applied, interviewed and was offered a job as a radio operator and on air announcer. I was so excited to try something different and completely new so I took the job. 

During my interview I blurted out I was hard of hearing. I immediately thought I had shot myself in the foot. Not that I wanted it hidden the fact I am hard of hearing and and wear hearing aids but I didn’t want the persons interviewing me thinking that I couldn’t do the job. To my amazement I landed the job and it has been a huge learning experience. 

There is so much to learn!!! Learning computer programs and sound boards to tower transmitter logs. Lots of things I had never experienced before. Training was one on one so communication was good. On day 2 of training my hearing loss was brought up. I was asked the severity of my hearing loss. I am at a moderate severe loss. I was asked about my hearing aids. I was shocked. Instead of feeling like I was going to lose a job here is an employer that wants to learn and accommodate. The engineering staff was told and they offered any help with the headphones working with my hearing aids. 

One thing that was shown to me is how much of the radio is visual. Not what you think an audio thing as radio. If someone is at the door a light flashes on the wall. If we get a severe weather alert, which we did when I was training, first an alarm sounds. I was asked if I could hear it, I had to admit no I couldn’t. I was told don’t worry now watch. Right then a large orange strobe light went off in the studio area. Wonderful no stress if I can’t hear the siren watch for an orange flashing light.   Fire alarms are all flashing lights also. 

 One issue I have is monitoring the volume of my voice. My husband often will tell me to lower my voice. I worried when doing the news or weather what if I am to loud or soft. Again visual, there are meters. I know where I am suppose to be at so I can just watch the meters for the right level. 
So stress has been high from learning the business but I feel so relieved that I don’t feel that hearing or lack of hearing will affect my job. 

I just completed my first night on air. I did it with No major incidence. My husband tuned in at one point in the night and heard me and said I sounded professional. Great to hear some feedback. 

It feels good to learn something new.  It feels great to have an employer that is accommodating. 

Now to develop my on air personality, I say just be yourself. 


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