A Hearing Loss & Late Deafened Blog

Attendee Shares Her SWC Convention Experience

In SWC convention on September 1, 2014 at 5:27 pm

By Nancy Fenstermaker

Nancy  (picture by Chelle)

Nancy (picture by Chelle)

Lorne Smith, the President of the Say What Club opened the seventeenth SWC Convention which took place in Madison, Wisconsin at the Madison Concourse Hotel on July 2014. He welcomed the 32 registrants, families and friends to 2 days of workshops. The importance of this hearing loss convention is to encourage participation between SWC nine email lists members through social contact and educational workshops.

Lorne's Welcome (picture by Chelle)

Lorne’s Welcome (picture by Chelle)

Dr. Samuel P. Gubbels, he researches regenerative therapies to study hair cell loss in the human ear which causes 80% of hearing loss. The ear is fully grown at birth and it has been assumed that the hearing loss is irreversible. In his laboratory he uses acoustic energy pathology of animals to compare the development of the human ear’s cochlea receptor before birth. This research is based on gene therapy involving the organ of the Corti in mammalian animals. The gene Atoh1 is inoculated into the cochlea of their inner ear to regenerate hair cells or auditory sensory cells. To quote Dr. Gubbels.. “Hair cells have to be attached to the brain or they won’t work.”

Dr. Gubbles

Dr. Gubbels (picture by Chelle)

In the laboratory, mice and guinea pigs are tested for reactions to Atoh1. Atoh1 generated hair cells are functional. Other ways to regenerate hair cells are to use endogenous inner ear stem cells in the human ear. Mouse stem cells are like Adult inner ear. This invivo model can be improved with his lab’s work in a variety of pluripotent stem cell types introduced to their invitro model. The University of Wisconsin Stem Cell & Regenerative Medicine Center uses the pluripotent stem cell in collaboration with the laboratory of Dr. Su-Chen Zhang. This stem cell research looks at the inner ear’s sensory epithelia that detect the mouse’s head motion, balance, and sound. The laboratory tries to create mechanosensitive hair cell-like cells from the mouse’s embryonic and pluripotent stem cells. This invitro research has to be recapitulated into the invivo development of the mouse’s inner ear. The scientific markers and progenitors from this stem cell research open up a future of evaluation into the results of their laboratory findings. They review Stem Cell Clinical Trials around the world not just in the USA. The further research will lead to more important uses of the pluripotent stem cell into cell-based therapies for hearing loss. One model used now in humans is the cochlear implant which spark hair cells to talk to the brain. Dr. Gubbels concluded his presentation and the fielded the audience for questions.

Workshop attendees.

Workshop attendees. (Picture by Chelle)

Lorne Smith, president of the SWC during the workshops. (picture from Chelle)

Workshops (picture by Chelle)

Tina Hallis, is a Ph.D. speaker and trainer for her company The Positive Edge. She spoke of positive psychology through positive thoughts and feelings. She started with a discussion on why it’s hard to focus on the good. Our brains are wired to survive so we are by nature of cautious. If we are outside and walk by a field on the horizon do we see a cow or a bull? We think it might be a bull…a negative thought but a survival technique. So we need to think it might be a cow first. The Positive Edge trains our mind to change our brain. We can do that by adding positive moments to our day. Sing a song or talk to a friend. Do a kind deed. Anything to make us smile. A smile trains our minds even though it’s subtle. A smile can communicate with your brain on through a neural connection. We have to rewire our brains. She wants us to realize we can be happier in life. List some positive moments in our day. Think of good memories. Tell someone a positive about them. Use happy and positive thoughts to feed your “mental nutrition.”

Cochlear Implant workshop (picture by Chelle)

Cochlear Implant workshop (picture by Chelle)

Julia Biederstein, Advanced Bionics, their Cochlear Implant offers close to a normal-hearing ear. She presented a drawing and a handout of the ear, labeling all the parts of where hair cell loss occurs. This loss creates hearing impairment. There is the outer ear, inner ear and three small bones in the eardrum. The eardrum creates a chain reaction with auditory nerve with hair cells. In a hearing loss person these hair cells are missing.

First though their company wants to know if an adult is a candidate for a CI. She covered a few questions the listener should answer…do you have difficulty following conversations without lip reading; hear pretty well in quiet environments but struggle in noisy and in a group; cannot follow telephone conversations. Does the listener feel socially isolated in everyday life or at work, etc. ? Then get a Advanced Bionics Cochlear Implant.

Dr. Juliette Sterkens on hearing loops. (picture by Lorne)

Dr. Juliette Sterkens on hearing loops. (picture by Lorne)

Dr. Juliette Sterkens, AuD was Say What Convention’s Keynote Speaker at its banquet. She has a audiology practice in Oshkosh, WI. Through the years she has become a part of hearing loop history. Standard hearing loops was set in Europe with the IEC (International Electrotechnical Comission). During her presentation she asked who was wearing Cochlear Implants or hearing aids. These two devices need to have telecoils to listen in a hearing loop room. She has demo device with earbuds to let all the audience members experience what hearing loops do for one’s hearing. The magnetic field and flux lines in a hearing loop room are regulated by the IEC. It is a universal collaboration between listeners and the looped community because along with the IEC standard, the British ADA mandates hearing loops. The United States has no regulatory organization because it follows the IEC. All hearing devices are now universally linked through loops so the same US or Canada or other country listener can travel to Europe and hear in the loops there too.

A hearing loop is a wired placed around the perimeter of a room connected to an amplifier. The loop receives an input signal at the same time creates a vertical magnetic field, fitting the IEC standard. The magnetic field reaches the telecoil in the cochlear implant or a hearing aid. Dr. Sterkens noted that audiologists have to know to position the telecoil vertically for hearing loop use. The telecoil is programmed and configured into the wearer’s cochlear implant or hearing aid. The benefits of telecoils in a hearing loop is the difference between sitting in a theatrical play and hearing all the distracting sounds or the performer’s voices brought directly to your ear and no distractions.

diagram of hearing loops (picture taken from ListenTech.com)

diagram of hearing loops (picture taken from ListenTech.com)

Dr. Sterkens, in addition to being an audiologist who understands the benefits of hearing loops also knows that advocacy for additional loops in the community is essential. She gave all audience members Hearing Loop Surveys to be filled out by the cochlear implant or hearing aid wearer. As advocates for hearing loop installation, the Say What Club members can relate their satisfaction on this survey. Their experiences with hearing loops and telecoils are important in the survey. Understanding how to tell the community about hearing loops is important in advocacy. Go home from the convention Dr. Sterkens says and tell audiologists about hearing loops. “Foster the Change” get out and complain, better yet tell the media. Take your Hello Card with you everywhere as it explains that a hearing loop would make a certain venue ADA compliant. Get the Community in the Loop.

Thank you Nancy for writing about the SWC convention.   We are glad you enjoyed it.

New Hearing Aid Molds

In Hearing aids on August 22, 2014 at 1:42 pm

By Chelle George

Yesterday I got my new hearing aid molds and the feedback problem is not nearly as bad.  That’s good news.  The new ones don’t itch and irritate my ears like the domes did which is also good news.  There is still some feedback while I insert them into my ears so my audiologist put in a 6 second delay to give me time to put them in without feedback.  Now they play a little ditty when the battery snaps shuts.  Ta-da-ta-tah!”  You are now hearing again.

New molds

New molds

There were some issues I had with the app which my audiologist tried very hard to help with.  My first problem is reconnecting to the app if I happen to walk too far away from phone.  He told me to turn off the whole phone and it should be easier to reconnect.  He demonstrated and it connected.  Later, while at home I walked too far away and had to reconnect.  The app kept telling me it couldn’t connect and I should go into demo mode.  The app doesn’t do me any good in demo mode.  Since we just turned my phone off and on an hour before, I hoped I wouldn’t have to do that every time I walked too far away.  I fiddled around some more and found out if I turned the Bluetooth device off and back on, it reconnected the first try.  Okay, I got that down now.

The next problem I needed help with was the spatial configuration (mic direction).  I could not figure out how to zoom my hearing aids forward and I could not get them to go right either which I think would be great while I’m driving to be able to hear my passenger better.  In my last pair of hearing aids, they focused forward in the car at the windshield making it very difficult to hear my passengers so my audiologist set a specific car program in them that kept all the mics opens.  So when I saw I could change the direction of my mics in the new hearing aids I was excited but then I couldn’t get it to work.    My audiologist fiddled around with it for a bit and even called the company about it.  It seems there are some glitches in the iPhone app and that’s one of them.  I sure hope they get the bugs worked out of it so I can try the right direction while driving someday.

I got something new to play with, a streaming device for my TV.  I haven’t been able to hook it up yet and even though I watch very little TV, I’m kind of excited.  The only time I watch TV consistently is during football season and that starts Sept 4th!  (Go Steelers!  Go Seahawks!) Normally I use captions when I watch TV or a movie but I take the captions off when watching football because they get the way of the game.  I have the noise turned up because I like the sound of the crowd but I do not understand much of the announcers say.   So I’ll have to set it up this week with a movie to be ready for the game.

As I got in my car at the audiologist office I thought, “I don’t have a radio in the car.  I should hook up Pandora because I can!”  My 80’s station popped up and “Another One Bites the Dust” came up.  Oh good song….  Good sound too.  It was closer to what I remember 30 years ago.  So I’m all happy in my car singing with Queen and thinking about the coming football season.

When I get home, there was a mad rush to get things together for an evening picnic with friends in the mountains (that’s when I walked too far from my phone again and lost my connection).  There was no real reason to keep my the Bluetooth device going at the picnic so I put it away but of course kept my hearing aids in. As we pulled in parking spaces were rapidly filling up because of a wedding at the reception building just beyond the picnic parking lot.  This happens a lot there and it can be kind of irritating but I think all of our group got in.

We greet the others there and I talk to a few people about my new hearing aids and then of course conversation drifts this way and that way and I’m following pretty good.  We have dinner and then sit around the fire pit.  Music suddenly fires up at the reception just beyond a patch of trees.  “Man, that’s loud,”  I keep thinking.  I keep looking at the others who keep chatting.  They seem unaffected.  I look a few picnic tables back wondering if I hear it now because of my new hearing aids or because we are closer.  I know we’ve been here dozens of times while weddings went on but I had no idea the music was in hearing range there.

Without meaning to, I say out loud, “That’s loud,” as I look into the trees.  A few others heard me and laughed.  “Now you’re hearing what we hear.”  I can’t believe I haven’t heard the music like that before.  Wow.  The world is a noisy place.

My only issue left is my ears still work out the molds. As I talk/chew/laugh, they work out and I’m pushing them back in.  I guess I have an overly strong muscle there.  It doesn’t irritate my ears like the domes did at least.  They just slide right back in and without feedback so it doesn’t rate high on my list of issues but more like a minor irritation.  Maybe there’s something I else I can or maybe I’ll get used to poking them back but at any rate, I’ll be bringing that up on my next visit to the audiologist.  First I need to wear them a while and see what else might need to be fine turned.

So for now, I’m feeling better with these new hearing aids.  I’m about to run errands in my radio-less car so I’ll hook everything up and listen to my 80’s station on Pandora.

Managing New Hearing Aids

In Hearing aids on August 17, 2014 at 12:48 pm

By Chelle George

Shiny box to protect the new hearing aids.

Shiny box to protect the new hearing aids.

A few weeks ago vocational rehabilitation gave their approval for my new hearing aids and last week they were in. I went in Wednesday to get them programmed and to get hearing aids molds made. We know from the loaner hearing aid I did not like the domes. There’s some feedback problems and they constantly push out of my ear so every 5 minutes I pushing them back in. My ear became sore so I returned the loaner early not wanting to deal with it.

Here are the new hearing aids.  With domes.

Domes.  Blah.

New hearing aids-Cool! Domes-not cool.

And they are a boring color so I will have to decorate them when I have time this week.

As soon as we turned the new hearing aids on the feedback was horrendous.  If I can hear it that loud then I know it’s bad.  It’s not just the high pitched squeal, these babies SCREAM because my hearing loss is moderate/severe so the power is turned up.  Once they were in my ears they were okay until I went to run my fingers through my hair.  I winced and the audiologist said he’d take ear impressions later which will take away the feedback.  I hope.

These Siemens “Carat” hearing aids just came out last week with a new upgrade and I’m one of the first to try it.  There are more options than my old hearing aids had like turning off the annoying beep when batteries are low.  He can change the beeps to more tolerable beeps when I change programs on them and that I like because the beeping has always driven me nuts.  I made sure I had a T-coil so I continue to use the hearing loop and neck loops for my phone. I can change the programs on my hearing aids because he knew I didn’t want to carry around a remote on top of everything else.  Then he pulled out this…

Mr. Bluetooth

Mr. Bluetooth

And I’m not exactly thrilled to see this to tell you the truth.  Bluetooth sounds great but it wears my hearing aid batteries down faster and my phone battery as well.  Yeah, it has great sound but I don’t like all the extra drain.  When I use my T-coil, (neck loop and hearing loop) there is no extra battery drain at all.  I am Ms. T-coil and my audiologist is Mr. Bluetooth and here’s where we clash.  The device came with the hearing aids so of course I’ll take it.

I can’t use it to hook into meetings and I could use it for TV if I buy some adapter but I’m not a big TV fan (until football starts up again) and I’ve used captions since the late 90’s to fill in the missing pieces so ‘listening’ to TV is kind of weird.  I’m unsure if I’ll hear enough even with the bluetooth and will probably end up depending on captions anyway.

The only cool thing about this device is there’s an app for my phone which I downloaded.  It lets me chose the direction I want to hear from; all around me, focus forward or backward and to the sides.  I can control treble and bass which is nice for my music.  Music sounds so tinny through bluetooth and the neckloops.  I think that’s because I don’t hear the higher frequencies anymore and when that’s added in through my hearing aids, it sounds weird.  I hear low tones (bass) and that’s what I’m used to.

The app also shows how much life is left in my hearing aid batteries and that’s kind of cool, it’s much nicer to check in that way instead of all annoying beeping.  So he showed me how to use it all, took ear impressions for new molds and sent me on my way.

I kept the bluetooth device on as I went shopping, listening to my music with the bass turned up.  I can also change programs with that devices.  Maybe sometimes I’ll use it.

Being a good girl I wore them the rest of the of the day even though when I laid back on pillows to watch a movie, they screamed so I sat up.  Sounds come through naturally and I like that.  The domes made my ears itch too so I was constantly pulling them out and jamming my finger in so scratch.  I’d put them back in with a whole lot of screaming before they settled into my ears again.

The next day I went to work with for a full of training.  The feedback made people on the other side of the room cringe.  It’s a good thing I work I at a deaf and hard of hearing center because they all put it up with it in good nature.  I had troubles changing my programs and had to used the bluetooth device to change it so I knew where I was at.  If I walked too far away from phone, I lost the bluetooth connection and had to find it all over again.  The battery on my phone went so low I had to charge it while at work which is something I normally don’t do.

I found myself frustrated with all the technology and I’ve never felt that way with new hearing aids before.  It’s like when I get a new phone, I’m excited about all the new options but frustrated with the learning process.

When I got home, I put the new hearing aids back in their shiny box and they have not come back out since.  I’m not wearing them again until the feedback problem is fixed (this coming Thursday afternoon).  I took out my old comfy hearing aids the next day to finish day two of training at work without feedback.

I’m on the fence with these new hearing aids.  There’s some cool features but I’m worried the ear molds won’t be able to control the SCREAMING feedback.  If they don’t, I’ll return them and try another kind.  Maybe my hearing loss is too severe these days for hearing aids???  That thought floats around in my mind too.  In which case, I’ll have to consider a cochlear implant or go the deaf route with more sign language.  However I feel like I cope pretty well without hearing aids with lip reading and a few rules (like face me when talking to me).

I’m facing another threshold I think.  If my hearing drops even a little more it will shift my entire world once again.

threshold

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