HearLIFE event wrap up

And the event is over!  I should have done a proper wrap up yesterday, so here it the summary:

On Saturday, 7/23/11, Med-El hosted a HearLIFE Expo at the Marriott in Overland Park, KS, with 3 speakers, a couple of Cochlear Implant audiology and surgery exhibitors, and a few event promoters.  Approximately 20 people attended, and the event was captioned as well as the room was looped; attendees who had t-coils in their cochlear implant(s) or hearing aid(s)  could activate the t-coil and eliminate all environmental sounds and focus solely on the speaker with the microphone.

The event lasted about an hour and a half and the 3 speakers were interesting and engaging.  They touched on a variety of hearing related issues, then drilled down into why choosing Med-El as the cochlear implant of choice was important.

After the event, I spoke with the outreach manager, Christine Pett, about her son and about her experiences growing up with a child who has hearing loss.  I’ll have a follow up article on that within the week.  She is greatly interested in speaking directly with our group so we’ll plan to have her come out to Kansas City sometime in 2012.  She mentioned that there were things potentially completing FDA (U.S. Food and Drug Administration) approval that she’ll be able to announce next year.  She is based in St. Louis, MO and can be reached at christine.pett@medel.com if you have any questions.

I also talked with surgeons from both the University of Kansas Hospital and Midwest Ear Institute, Dr. Staecker and Dr. Cullen, respectively.  Both are experienced surgeons, and I wanted to follow up on some research that Dr. Staecker was doing that he talked about at the HLAA conference in 2009.  His research involves regeneration of certain parts of the inner ear and he may be getting close to FDA approved trials.  That sounds very exciting and I know a number of our members have asked about regeneration and things involving genetics and stem cells, so I thing having Dr. Staecker give a presentation would be very beneficial to our chapter.

That’s it from this event – if you want a recap of all the micro-blogging done during the event, I’ve linked them all below!

https://hlaakc.com/2011/07/23/hearlife-expo/

https://hlaakc.com/2011/07/23/hearlife-blogging/

https://hlaakc.com/2011/07/23/speakers/

https://hlaakc.com/2011/07/23/hearlife-implantable-hearing-technology/

https://hlaakc.com/2011/07/23/hearlife-expo-hearing-loss-and-cochlear-implants/

https://hlaakc.com/2011/07/23/hearlife-expo-what-is-a-cochlear-implant/

https://hlaakc.com/2011/07/23/hearlife-expo-cochlear-implant-criteria/

https://hlaakc.com/2011/07/23/hearlife-expo-what-to-expect-during-ci-surgery/

https://hlaakc.com/2011/07/23/hearlife-expo-ci-benefits/

https://hlaakc.com/2011/07/23/hearlife-expo-and-guest-speaker/

https://hlaakc.com/2011/07/23/hearlife-and-med-el/

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HearLIFE and Med-El

Christine, the Med-El representative from St. Louis, spoke about her experiences as a mother with a deaf child.  Her son, Dylan, became deaf at 1 due to spinal meningitis, and just turned 18.  He wore hearing aids and was schooled at an oral deaf school that did teach some sign language, but then the hearing aids started not working and they had to go to sign language only for a short time.  That was around when he was reading and writing and communication was starting to get difficult.  He eventually told his family that he wanted to hear and that he wanted a cochlear implant.

HearLIFE Expo and Guest Speaker

Kristin Matta is from Colorado Springs and has a son who was implanted at 3 1/2, is now 12, and has a CI. He had two hearing aids growing up and kept struggling to hear, she felt he was working too hard to hear. Cochlear implants were an option but she felt she had some misinformation, such as the size of the cochlear implant body processors, or static discharge. She talked to many many people, maybe over 100 people, just to be secure in her understanding of it being right for her son.

She really praised Med-El’s customer service, she would have a broken cable at 7:30pm on a Friday of a 3 day weekend, and Med-El was there and able to take care of things with her, so she is grateful for that choice.

They showed a video of Garrett, her son, talking about his love for sports, and dogs. He says the CI is so amazing and it’s made a big impact on his life, he wouldn’t be able to hear and talk to us on the pre-recorded video right now. He goes to school in Colorado Springs middle school and he hears the teachers pretty well.  He wears his implant while playing sports, he hears on the phone and cell phones, with no special equipment, he enjoys music and his big challenge is sometimes with background noise, in the classroom can be a challenge, or in a restaurant.

His mother feels that her son has his expectations set really high and

He won’t take off the CI – he wears it even in showering rain with soccer, his mom had a conversation with him just last week about that and he said he’d rather stop playing than take off his CI.

Her husband did some things to his helmets to help make it fit with the CI better – baseball and biking helpmets.

He does take it off when he goes swimming, but many times when he gets wet it’s water resistant.

He is not bi-modal, he prefers his lone CI.

He was not bi-laterally implanted because it was not standard at the time, and we kept just putting off, like if he’s doing bad in school, we’ll get a second one, or maybe one is cool, two will socially stunt him, things like that.

HearLIFE Expo – CI benefits

Things you can generally expect to have an improved experience with after implantation and activation:

Hearing environmental sounds (birds chirping, cars driving, flip-flops flopping)
Speech perception and comprehension
Improve your own speech clarity
Hear more while in noisy situations
Use the telephone
Music appreciation

HearLIFE Expo – what to expect during CI surgery

Surgery takes around two hours, and is done under general anesthesia. It’s generally done as an outpatient procedure.

You leave the hospital wearing a pressure bandage, then recovery time is 3-6 weeks.

Activation day, first each electrode is activated one at a time, then your tolerances are established – making sounds not too soft and not too loud (can be painful). Several visits are needed to widen tolerances over time.

HearLIFE Expo “What is a Cochlear Implant?”

There are two major components of a cochlear implant – an internally implanted component, and an external sound processor.

The internal surgically implanted part consist of a electronics package, an active array of electrodes that stimulate your auditory nerve fibers, and an receiving coil that sits under your skin.

The external component consists of the processor, battery pack, and the transmitter that is connected over the skin to the implanted device’s receiving coil via a magnet.

Depression and Hearing Loss

By Shanna Groves (a.k.a. Lipreading Mom)

Originally posted at:

http://www.LipreadingMom.com

Sometimes, Lipreading Mom receives comments that are too important not to share with readers. This is one of them. One of my readers–I’ll call him “Ben”– shared how his new hearing loss has caused some depression. This is Ben’s letter and my reply…

Dear Lipreading Mom,

What do you do about depression? I started losing my hearing about 4 years ago and it has gotten worse I can tell. I have hearing aids and I am coping (I teach so sometimes it’s difficult). But I find myself, especially in the mornings/night worrying, and I know there’s nothing I can do about it…but I become depressed thinking about losing more hearing. This is the first medical issue I’ve ever had and it has made me feel very vulnerable. Any suggestions? There are no hearing support groups anywhere near me. I’ve gotten so scared that I’m afraid to have my hearing retested. It’s impacting my happiness.

-Ben 

Dear Ben,

Thank you for your words. You have my sympathies and understanding with your situation. Depression is common among people with adult-onset hearing loss. Although my hearing loss was diagnosed 10 years ago, the big “D” has been another health issue I’ve experienced. While there may not be a local hearing loss support group where you live, I encourage you to visit an online hearing loss support group. One I’ve visited is Open Chat Night at www.openchatnight.com. Also, visit the Hearing Loss Association of America National Web site (www.hearingloss.org) for tips on coping with hearing loss and depression. Some things that may be helpful in coping with hearing loss-related depression:

  • Talk to your family doctor and/or audiologist about your depression. You may be referred to a counselor who specializes in coping with hearing loss depression and grief. I found that for many years, I grieved the hearing that I used to have. The counselor pointed me to a grief support group and discussed medical options should I choose them.
  •  Write down your thoughts about hearing loss. I’ve kept journals for years, and this writing allowed me to express my worries, fears and sadness in a tangible way. It was must better for me to write about these feelings than to suppress them.
  • Pursue the hobbies/interests you enjoy that don’t necessarily require “perfect” hearing. Although phone conversations are difficult for me, I enjoy meeting friends one-on-one for coffee. I also enjoy regular exercise and have found that it curbs some of the depression. Other ideas: Reading, crossword puzzles, bike riding, woodworking.
  • Realize that you are not alone with hearing loss. The more you accept the loss, the more likely you will be open to others about it. And the move I’ve shared about my hearing loss with others, the more people have opened up to me about their hearing concerns.

With time, you may discover how your hearing loss can be a way to encourage and connect with others in a similar circumstance. Your experiences and wisdom are and will be important.

Please keep me posted.

-Lipreading Mom

Do you have a comment or suggestion for Ben? Post it here, and I will make sure to forward it on.

Adventures in Tinnitus (1): Make the ear noise STOP!

By Shanna Groves

 

Originally posted at:

http://LipreadingMom.com

Oh, to have a quiet moment.

Welcome to the world of tinnitus. It’s a condition characterized by a perceived ringing, buzzing or whistling sound in the ears.

Lipreading Mom’s 6-year-old daughter recently shared she can’t hear the teacher at school well because of the sounds inside her ears. Her school audiologist admits there isn’t an objective way to test for tinnitus. The best way to test at all, the audiologist claimed, is to describe the noise to a qualified audiology professional or to someone who lives with the condition.

Well, Lipreading Mom has become an expert,  having personally dealt with tinnitus for 10 years. Some days, the inside of my ears plays a quiet chorus of crickets chirping their tinnitus tune. Then there are moments when my ear concert performs much louder, with ringing hand bells joining in with the crickets. When I make the mistake of attending a rock concert with my husband, sans ear plugs, the tinnitus chorus competes with the sound of squealing guitars and screeching lyrics. And the concert screeches on for days inside my ears. Thank God I’ve only made that mistake once.

This is the first in a series of articles about tinnitus, the sometimes maddening condition that affects up to 50 million people in the U.S and millions worldwide. And that’s the number of sufferers owning up to the condition. Without a proper diagnosis, someone may live with ear noise without the ability to explain why.

 The American Tinnitus Association offers plenty of tips for managing perceived sounds in the ears on its Web site. Among the advice:

  •  Meet with an ears, nose and throat doctor (ENT) or audiologist to discuss your tinnitus.

 Lipreading Mom’s advice: Come armed with your “MES” list: medication, stress, and environment. Document all the medication you currently or previously took, any stress triggers in your life, or environmental stimuli that may have triggered your tinnitus. Environment includes work and family setting, exposure to loud noises, and diet. Two of the biggest diet culprits I’ve found for worsening tinnitus are caffeine (that twice-daily cup of java) or salt since they both contribute to a rise in blood pressure, which aggravates my already ringing ears.

  • Don’t panic. Tinnitus is rarely a sign of something life-threatening or serious. Sure, it seems alarming to be serenaded every moment of the day by constant ear noise. That’s when coping mechanisms can help.

One of Lipreading Mom’s favorite tips for coping with tinnitus: Create your own white noise. Turn a fan on low while trying to fall asleep, or listen to a CD of ocean waves while commuting to and from work. Remember to keep the volume low so that the white noise is calming, not ear piercing and potentially damaging to hearing.

I’ll discuss more about how to cope with tinnitus later. In the meantime, visit an ENT or audiologist if you haven’t done so already. Be sure to bring that important MES list with you: medication, stress, and environment.

Time to get busy on that list, tinnitus sufferers!

5 Tips for Enjoying the Holidays with a Hearing Loss

By Shanna Groves, LipreadingMom.com

Originally posted at:

http://lipreadingmom.com/2010/12/10/lipreading-moms-5-tips-for-a-happy-holiday-with-hearing-loss/

It’s the most wonderful time of the year. But for the 1 in 10 people with hearing loss, it’s also the most challenging time for communication. Lipreading Mom should know. I’ve had 10 years of holidaytime hearing loss experience.

The whole family is packed around the dinner table, busily chatting about their good fortune and laying food onto their plates. Simultaneous conversations are difficult for us hard of hearing folks to follow. And it’s nearly impossible to lipread the youngster sitting next to me who’s talking with a mouth full of mashed potatoes.

So what’s a person with hearing loss to do at the holidays? Avoid large crowds entirely?

Lipreading Mom offers these suggestions for focusing on happiness, not hearing loss, at the holidays.

Create the right environment. If you haven’t already done so, let the hostess know in advance about your hearing difficulties and for her help in accommodating you. Lipreading Mom suggests good table lighting for easy lipreading and no dinnertime music unless it’s at the lowest volume imaginable. Sorry cousins, but no squeaky clarinet performances. If a TV is playing, ask for the volume to be turned down and for the closed captions to be turned on.

Ask for hearing help. Sit close to someone who can be your hearing helper. Decide on a code word between the two of you that means you need help in a hearing situation. Be sure to sit close enough to the helper and have a pen and paper handy in case you need the details of a tableside joke written down.

Face your guests, not the stove. If you are hosting the get-together, have most of meal and table preparation completed before guests arrive. This will give you time to converse with guests as they arrive instead of standing over a stove. This year, Lipreading Mom prepared all side items for Thanksgiving dinner 24 hours in advance, then put everything into the refrigerator. A half-hour before mealtime, the items warmed in the oven after the turkey came out. So you can spend a few minutes lipreading your chatty niece, take a guest up on his offer to slice the ham.

Play the quiet game. After everyone is done eating or opening presents, excuse yourself into a quiet room, such as a bathroom or porch. Spend the next five minutes giving your ears a break from holiday noise. Clear your head by meditating, praying or replaying a fun holiday song in your mind. This is your time to decompress from having to follow table conversations and also a good excuse not to wash a sink full of dishes.

Find a one-on-one conversation spot. Pick the least noisy place in the house (not counting the bathroom), and grab a loved one for a chat. Just because you’re hard of hearing doesn’t mean you can’t still be part of meaningful conversation. You just have to pick your quiet spot so you can actually hear that conversation. No gum chewing or smoking allowed since you need to see a person’s lips to lipread. And remind your chat buddy to speak at a natural volume level and pace. No shouting aloud (unless it’s part of a good joke).

While it can be challenging for a Lipreading Mom to always hear well with a house full of kids, I have one thing in particular to be thankful for this holiday. My hearing aids come with an on/off switch. I plan to use that switch as needed come December 25.

~*~*~*~*~*~*

Follow Shanna Groves on Facebook, Twitter and LipreadingMom.com.

The Cochlear Implant Spectrum: Two Experiences-Dennis and Kelly

This was originally posted on my blog and thought I would share it here also.

**Beware:  This is a long post.  I have had questions about how people benefit from Cochlear Implants (henceforth abbreviated as CIs) in different ways and decided to type up a post using examples.**

Everyone is unique.

CI users benefit from their CIs in different ways.  I have yet to observe two CI users who utilize their CIs in the exact same way.  It is fascinating to see how so many people use the same technology but in different ways.

Then again, maybe it makes perfect sense.

Think about it, children who are in the same classroom with the same teacher will perform very differently on exams.  A 5-year-old child in a class that is learning to read can read at a 4th grade level whereas another 5-year-old child in the same class is learning to read his/her own name.  We all are unique with our own strengths and weaknesses.  We all have different backgrounds.

There is a cochlear implant spectrum (for lack of a better word).

General Background:

Dennis is my boyfriend.  We both are profoundly deaf, we both sign, and we both have CIs.

Sometimes I use Dennis and myself as examples of what CIs have to offer.  We both are figuratively on the opposite ends of the CI spectrum.

Hearing Loss Background:

Dennis became deaf at the age of 3 from spinal meningitis.  His speech and spoken language were already developed.  He had heard for the first 3 years of his life even though he was so young that he does not remember being able to hear.

Ages 0-3 is the most critical period in a child’s life when it comes to language.

It wasn’t confirmed until I was 20 months that I had a profound hearing loss (even though I was born deaf).  I went almost the first 2 years of my life without access to a language.  I actually found some test results a while back that stated that I had the language skill of a 7 month old baby at the age of 2.  It was clear after being aided that hearing aids didn’t provide enough amplification to gain any speech discrimination (remember this was 20+ years ago).  Thankfully my parents worked hard at giving me access to a language.  I was given a language test again at age 3 which showed that I was no longer delayed (thanks mom and dad for helping me catch up).

Dennis and I both were mainstreamed.

Dennis attended school without sign language interpreters until college.  Growing up, Dennis was exposed to a little bit of sign language here and there.  He wasn’t really fully exposed to it until college, he then became fluent in sign language (more CASE/PSE than ASL).

I attended school with sign language interpreters and attended speech therapy.

Dennis and I both went through periods of wanting to wear hearing aids and refusing to wear our hearing aids as we went through school.

Dennis’ hearing loss was somewhat progressive over the years whereas mine was very stable.

Cochlear Implant Candidacy:

Dennis was told that he was the perfect CI candidate because of his hearing loss background.

If only my hearing loss background had been taken into consideration during my CI evaluation, I would have been the worst CI candidate.  I have read that some CI centers will not implant people who have similar hearing loss history as mine.

Cochlear Implant Timeline:

Dennis was somewhat resistant to the idea of getting a CI at first but was encouraged by his family to explore a CI.  He then decided he wanted to get a CI and was implanted about 9 years ago at the age of 22.

I was implanted about 20 months ago at the age of 25.

Cochlear Implant Activation Day:

Dennis could somewhat describe what sounds sounded like and could recognize sounds.  He was able to have a telephone conversation a few days after he was activated.

It took me a while before I could actually hear something.  Sometimes people don’t even hear anything because their brain just does not recognize what sound is.  I was just so glad I could actually tell that I was hearing something.  Everything sounded the same for the longest time and I had no clue what I was hearing.  I couldn’t even tell a train from a person’s voice.

Cochlear Implant Journey:

The journey is not easy but it is rewarding.  It took some time for Dennis to adjust to his CI.  For the first few days, his programming made people’s voices sound like Muppets – high pitched, twangy, and hollow.  After trying some different programs on his Advanced Bionics Clarion C2, he found one that made the voices sound “right.”  He decided to no longer use the other programs and stick with that one.  He made a commitment to work on listening and tolerating sounds – it took a lot of willpower to not just slip back into silence.

It took me a long time to adjust to mine.

It took practice and commitment for Dennis to hear well enough with his CI to make phone calls to unfamiliar people.  It tested my patience level with having a constant unfamiliar high pitch noise going on all the time.

Dennis can occasionally hear sounds out of his unimplanted ear.  It is rare for me to hear something without my CI or aid.

Cochlear Implant Benefits:

Dennis can pick out the next street over neighbor’s dog barking even if he’s listening to music.  He can have telephone conversations.  Oftentimes, he can identify which music instruments are played in a familiar song.  He can usually figure out which direction sirens are coming from and can oftentimes identify if it is a fire truck, ambulance, or a police car.  He can sometimes overhear information.  His speech is very intelligible.

I can pick out if there’s static when listening to music. I may hear the phone ringing if I’m lucky.  I can pick out that there are voices and music instruments in a song.  I rarely hear sirens.  I can pick up on environmental sounds that alert me to seek out more information (e.g. announcements).  If I’m lucky, people who are very used to my speech can understand a sentence I’m saying.

Cochlear Implant Limitations:

While Dennis does benefit greatly from his CI, there are times when he has to rely on visual clues to make sense of what he is hearing (e.g. lipreading).  People sometimes forget that there are times where he has to work hard to understand what he is hearing.  The hearing world would define him as a CI success story.

I benefit greatly from my CI but not in a way that the hearing world would consider me to be a CI success story. To me, my CI is successful even if it is limited.

We both struggle with background noises but in different ways.  Dennis can overhear conversations at times.  I can only separate 2 sounds at once and other sounds will get lost.  Sometimes I have to get Dennis’ attention that someone next to him is calling his name (e.g. background causing him not to hear his name and me lipreading).  Sometimes Dennis has to get my attention to let me know to focus on a sound I should be paying attention to.

Middle Ground:

We have the same technology but are complete opposites in what we gain from our CIs.  I get the general picture whereas he can get the details.  For example, I can tell when someone is talking by identifying the sound of a person talking.  He can hear that same person and can tell if they’re male or female and can describe that person’s voice.

No Can’ts:

We don’t focus on what the other person can’t do with our CIs.  Instead, we focus on what we CAN do.  We both enjoy sounds even if we hear them differently.  We can share our appreciation for sounds with each other.  I like knowing what Dennis can hear and he seems to enjoy knowing what I can hear.

We both are satisfied with what we gain from our CIs and our CI experiences.

Common Ground:

We both love listening to music together, we enjoy going to concerts.  We also enjoy being able to understand each other without depending on our CIs.  We enjoy both sound and silence

Pictures:

Dennis sporting his CI. (Doesn’t he look like a Secret Service guy in this picture?)

A side view of my CI.

Thanks to Dennis for his input!  Check out his blog at Positive Terminal.