Transport Security Administration (TSA) Disability Notification Card

A number of you who attended the recent HLAAKC meeting asked about the TSA Disability Notification Card that was mentioned during the HLAA conference.

Here’s a link to the page on TSA’s advice to Travelers with Disabilities:

http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm

At the bottom of the page, there’s a link to the TSA card that you can print out and fill in: Click here to download the Disability Notification Card for Air Travel (pdf, 69kb).

Happy travels!

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Free Friday Night Flick event – July 29

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I can’t wait for this Friday’s social event!  The kind people of the Crown Center are graciously going to turn on the captions for one of the video screens at the Free Friday Night Flicks!  It will be the lower screen and will be next to the Ice Terrace in the Crown Center Square.  We’ll set up on that side, and have a sign up for people to find us and congregate!  See the map:

Map of where to meet up for the HLAA group on July 29 2011

Map of where to meet up for the HLAA group on July 29 2011

Meet up in the seating area, we’ll be there at 8pm!  Bring your own lawn chairs, picnic blankets, snacks, beverages (no glass bottles).  The Harry Potter and the Sorcerer’s Stone movie will start at 9pm!  See you there!

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/

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.

HearLife Expo this Saturday!

Med-El, a provider of cochlear implants, is hosting a HearLife Expo this Saturday, July 23, from 2-4:30 p.m., in Overland Park. Plan to attend if you would like more information on Med-El and their products. Please RSVP (see flyer info below).

 

Disclaimer: All information was prepared by Med-El and does not constitute an endorsement by HLAA-KC.