The Wellspring...: Ear number two!

Below is another blog that I like to read. Some of it is hearing related but mostly concentrates on their family and pictures. This couple adopted their daughter from Quito (I think) and she went bilateral today! Click here to see more! The Wellspring...: Ear number two!

The Main Event of the Year.....

....is one week away! It's the Annual HLAA Convention 2009 in Nashville, Tennessee from June 18th - 21st at the Gaylord Opryland Hotel and Resort. Ever since Jennifer and I went to our 1st HLAA Convention in Oklahoma City, Oklahoma, we promised ourselves that we would not miss another convention. It was a life-changing experience for both us to meet with other people "just like us." And for the first time in our lives, it was a "perfect world" because we didn't have to struggle to hear or understand what was going on around us. Every single session and event is transcribed, captioned and interpreted. I, along with many others, look forward to this event and we are ALL getting excited about being under one roof again, seeing old friends and making new ones!

This year promises to be a FANTASTIC convention. I've "heard" that over 400 rooms are registered and that doesn't count the persons staying in nearby hotels or who live in or around Nashville. The workshops and seminars are wonderful and very informative. The Opening night features Vint Cerf, from Google who is considered to be the "Father of the Internet." He also has a hearing loss and his wife, Sigrid, has bilateral cochlear implants after wearing hearing aids for 50 years. I cannot wait to hear their stories and get their autographs on my HLAA magazine!

The Convention is also the 30th Birthday Celebration for HLAA and there will be a Birthday Party on Friday night. My neighbor, Tom Vorjohan, is part of the "entertainment" for the party and promises to be GREAT!

There is also a Research Symposium sponsored by the Deafness Research Foundation where they will be giving an update on the Latest Hair Cell Regeneration Research. My brother, Doug, is very interested in this research and is traveling from Ohio specifically for this. I'm so excited that he is coming and cannot wait to introduce him to the Convention experience and to my friends!

The Exhibit Hall is something to see & experience, as well. One can see and try many different assistive devices, cell phones, telephones, gadgets, weather alerters, fire alarms, and other new products and get a wealth of information on how to deal with and cope with hearing loss. Hearing aid and and cochlear implant manufacturers will have booths, too, for support and information. You can find out more about the exhibitors HERE! Even though the registration has closed online, anyone can still come and register in person for a day or two on site. And, entry to the Exhibit Hall for visitors is FREE with a pass that can be obtained at the registration desk. See http://www.hearingloss.org/ for more information.

An offsite trip to the Grand Ole Opry is planned, too! And if there is time, there is much to see and do around Nashville. I would encourge anyone to stop by the Nashville Library Services for the Deaf & Hard of Hearing in Downtown Nashville to see the Deaf & Hard of Hearing Section. Friday morning would probably be the best time for this trip. Due to recent budget cuts, the LSDHH library is only open from Mondays through Fridays from 9 a.m - 2 p.m. or by appointment. Call the director, Sandy Cohen, at the library at (615) 862-5750 for an appointment to see this particular section. It is WORTH the trip!

If you cannot make it, you can keep up with the Convention through the Convention Blog starting on June 18th. Abbie Cranmer, is the featured Blog Host this year and she is absolutely wonderful. She was one of my roommates last year in Reno and has a great sense of humor!

I plan to be there early on Wednesday morning at the Nashville airport to greet anyone coming in that day! And will work at the Convention Booth until 4 p.m. I'll be the one with a big smile on my face (and will be wearing RED, my favorite color!) Hope to see you there!

P.S. If you are coming, leave me a comment or email me at ldpullinsATgmailDOTcom so I can look for you!

Another Friend Goes Bilateral!

Another friend has taken the step to bilateral hearing! I met Becky a few months ago because she had many questions about having two cochlear implants versus one. She traveled to Nashville on Sunday from Knoxville with some members of her familly and had her second CI surgery yesterday! And is doing amazingly well. Check out her blog here and give her some encouragement! She will be activated in three weeks on June 9th!

Paying It Forward...One Step at a Time...

There is an old Chinese Proverb that goes something like this:

If you want to be happy for an hour,
Take a nap.
If you want to be happy for a day,
Go fishing.
If you want to be happy for a year,
Inherit a fortune.
If you want to be happy for a lifetime,
Help Someone....

Yesterday I particpated in Tennessee's very first Walk4Hearing held in Chattanooga along the beautiful Riverwalk at Chattanooga State Technical Community College. I've participated in many walks for different causes over the years. But, this walk was a very special one for myself and many others because we live with the challenges of dealing with a hearing loss or know someone who has one. I loved this particular proverb when I heard it because it doesn't take much to help someone. A person doesn't need to be rich or famous to make an impact on another person's life. There is research out there that shows that one lives a happier, healthier, and longer life when they live selflessly and give of themselves unconditionally.

For the last 30 years, HLAA has made a difference for the deaf & hard of hearing. HLAA works behind the scenes and advocates, educates, and focuses on issues that are important to individuals with hearing loss. All proceeds from this and other walks held across the U.S. this year will be used to fund local and national programs to help people with hearing loss and to raise public awareness of the challenges that they must confront each day. I wish I could name all the accessibility programs and standards that they are responsible for that benefit so many deaf & hard of hearing persons but that is another post for another day. Recent health statistics say that more than 36 million persons NATIONWIDE are affected by hearing loss.

Over the years, I've been very fortunate to have a wonderful support system with my family, friends, health professionals, coworkers, and even from strangers. Not everyone has that and that is where HLAA comes in at the national and local level. I am PASSIONATE about HLAA and it is no accident that I am in a position to "pay it forward" and help others with the challenges that they face every day dealing with hearing loss. This walk was so dear to my heart and with the help of family, friends, and even people who read this blog that I haven't met yet, I was able to meet BOTH of my fundraising goals!!! My original goal was $1,000 and I met that quickly in a few weeks. So, I set a new goal of $1,500 and surpassed that last week! Our HLA of Knoxville Chapter had a goal of $3,000 and we were able to raise $2,235, which is 75% of our goal! THANK YOU!!!!

You can see pictures here and here and here!

I'm still tired and on a "high" from seeing everyone and participating in this event. I've been busy this year traveling with my husband for our business, advocating for the deaf & hard of hearing, working with my local HLAA chapter, and working with Nashville and the National HLAA to prepare for the HLAA Convention in Nashville next month. But, my schedule is starting to slow down a little and I hope to resume my regular blogging again. Thanks again for all you do for the deaf & hard of hearing, for when you help someone, you make a difference for a lifetime!

More pictures to come soon!

A Very Special Walk

Please CLICK HERE to see my Walk4Hearing Page!

On Saturday, May 16th,I'll be participating in the Walk4Hearing in Chattanooga on the beautiful and colorful Riverwalk at the Chattanooga State Technical Community College in Chattanooga, TN. This very special walk is a fund-raiser to support the Hearing Loss Association of America. I am walking this very special because hearing loss is a public health issue that is third in line behind heart disease and arthritis. If you have been reading this blog for the last few years, you are familiar with my "Dance With Sound." I have lived with a severe/profound hearing loss since the age of 2. I joined HLAA when I started my cochlear implant journey and haven't looked back since!

HLAA is a lifeline for those who are affected by hearing loss. I would not be where I am in my "dance" if it wasn't for the support of family, friends, and HLAA. I've been to two HLAA conventions in the last two years which have been life changing for me. For I have found my "people" because they, too, know the trials and struggles of living with a hearing loss. Through HLAA I have made many long lasting friendships and gained a wealth of information related to hearing loss.

The Walk4Hearing goal is to increase awareness about the causes and consequences of hearing loss. By raising funds, HLAA can provide information and supprt for people with hearing loss and make a difference. It is estimated that 31 million Americans are affected by hearing loss and 2 million of them are deaf. Many of them lack the much needed information and support that they need as they struggle to fit in the hearing world. HLAA advocates for those with hearing loss to enable persons to be all they can be and live full and productive lives.

Someone asked me a few weeks ago that if I could name the one person that has made a difference in my life, who would it be and why. I've been blessed with a great support system throughout my life with family, friends, teachers, mentors, coworkers, health professionals, and even strangers who were understanding and willing enough to help me when I couldn't hear or "get the message." But the one person that has influenced my life the most would be my mother. She was such a great advocate for me and my younger brother, Doug, and did everything in her power to help us be the successful persons we are today in spite of our hearing loss. And because of her love and dedication, I am now in a position through HLAA to "pay it forward" and advocate for others with hearing loss who may not have the support system they need to succeed. Mom lost her battle to cancer 17 years ago on April 8th but is still very much a part of my life today. So, on May 16th, I will honor and remember her by wearing her picture on my t-shirt as I walk and advocate for hearing loss.

My team on the Walk4Hearing page (Chattanooga, TN) is the Knoxville Chapter of HLAA. Our team goal is to raise $1,000 and I have set a personal goal of raising $500.00. I hope to exceed both of those goals. I am not used to being on the receiving end of fund-raising efforts and do not like to ask for money from friends & family, especially during these difficult financial times. But this is for a good cause and I know that some of you will be glad to help! Your donation in any amount will be greatly appreciated and you can give anonymously if you wish.

If you would like to make a donation by personal check, please leave a comment and I will be glad to give you my email & address information so you can mail your contribution to me. All checks should be made out to Walk4Hearing. Donations are tax deductible and you will receive an acknowledgement from HLAA for your tax records.

Your donation will mean so much to me! Thank you from the bottom of my heart for your love and support for hearing loss.

Nerve Deafness

I originally wrote this post in my "Book Blog" (which I rarely write in anymore) on August 20, 2005 before my first cochlear implant surgery and thought it was worth repeating.

Nerve Deafness

When I was diagnosed with my hearing loss, my parents were told that I had "nerve deafness." Lately that term has puzzled me because I can hear sounds with the help of hearing aids. How can something be wrong with my "nerve" if I can hear voices and sounds around me? I wear the strongest aids on the market and currently wear Widex digital hearing aids. I've assumed that the doctors, audiologists, and speech therapists that I've had knew what they were talking about and just accepted that diagnosis. I've grown up believing that there was no cure for nerve deafness and never really thought there was anything else out there that could help me except my hearing aids. But, that doesn't seem to be the case at all. "Nerve deafness" can be a major misnomer because it incorrectly implies that damage is to the auditory nerve and not the cilia (hair cells) in the cochlea, which is responsible for much of a person's hearing loss. In reality, the term "nerve deafness" has been around for the last fifty years or so. Until modern medicine, those of us who grew up in the 1950's and beyond are usually given this term if doctors could not find a cause of deafness. In another words, it was a "one name fits all."

I'm beginning to understand that there are several different types of hearing loss. One type is conductive, meaning that the sound comes into the ear but does not get to the cochlea or auditory nerve. That indicates that something is wrong with one or some of the bones in the middle ear. In most cases it is usually the stapes bone which has become stiff, calcified, or hardened and will not move. And when it is not moving, it is not transmitting the sound to the cochlea and auditory nerve. That is what is considered a conductive hearing loss. The cochlea and auditory nerve are usually in fine shape. I noticed on my papers from the doctor and insurance company that I have been diagnosed with sensorineural hearing loss. Which means the sound IS coming into my ear, gets through those three little bones of the middle ear and gets transmitted to the cochlea. But it is not getting to the auditory nerve very well because there is a problem in the cochlea. The cilia (hair cells) in the cochlea are dead or the fluid in the cochlea isn't there or there is something else wrong in that part of the ear. This explains why so many people are labeled with "nerve deafness" because the sounds are REALLY coming into the ear but are not being transmitted like they should to the auditory nerve. That is why I had to do the balance test back in May to determine if I had any fluid in my ear. And I did! This is where the CI comes in. My implant is specially designed to mimic the functions of the human ear like natural hearing. There will be a 22 channel electrode inserted in my cochlea and it is specially designed to protect the delicate walls of the cochlea.

One might ask how a cochlear implant is different from a hearing aid. Hearing aids only amplify sound. No matter how loud the sound the hearing aid produces, it does not provide clarity. That is why I've had so much trouble with amplifiers, speakerphones, loud noises and loud people. I've always tried to explain that "louder" is not always better. I have a severe to profound hearing loss and my ears cannot process the information that they are receiving because sound is still going through the damaged part. A cochlear implant does not make sounds louder. Instead, it bypasses the damaged part of the ear and sends the sound directly to the auditory (hearing) nerve. How cool is that???!!!

I am realizing that some people who qualify for a CI think might that there is no point in pursuing it any further because they have "nerve deafness." But the testing that I've had done has actually shown that I'm missing hair cells in my cochlea. If Mom was still here, I'm sure she would be pleased and tickled pink to know that I haven't given up on the possibility of being able to hear the sounds that have been denied to me all of my life. I have thought about her a lot lately and wished she was here to share this experience with me. I hope to be able to help other people like Susan has helped me. We all need someone to give us that "little push" and hold our hand during the journey. God is so good. He is bigger than any obstacle in my path and knows exactly what I need at the right time. His timing is so perfect!

Can You Read My Lips?

The above picture needs a little explanation. (Smile!) My husband and I are currently in Los Cabos, Mexico for a much needed vacation, our first in four years.! Traveling to different country poses some challenges with the different languages when one only speaks English. Here in Mexico, the natives speak Spanish as well as some basic English words. For someone like me, who is fluent in “speech reading,” it is hard to read lips when English is a second language because the natives don't move their lips to form their words in English. Steve understands when I cannot and is very good about translating for me. I’m thankful that I do not have to travel alone!

But, this week was a challenge when we decided to take the Cactus ATV tour in Cabo San Lucas, BCS, Mexico. Before we started the three-hour tour, we were all outfitted with bandanas that covered our noses and mouths, goggles, helmets, and Honda ATV’s! Everyone’s faces were completely covered, including our guide’s, to keep the sand and dust from getting in. I could not even attempt to try to understand our guide’s muffled broken English with the Mexican accent but was able to manage just by watching him and the others. Luckily, I had a 350cc automatic Honda All-Terrain vehicle and it was pretty easy to figure out and drive.

We had fun driving through the desert, mountains, canyons, and streams. We enjoyed the beautiful scenery, especially when we got to Migrino Beach. The huge waves in the Pacific Ocean were just beautiful as we rode along three miles of the spectacular dunes, cliffs, and white sandy beaches.

View from my ATV

I took it all in and just rode my ATV, with the wind blowing in my face. My very favorite sound is the sound of the ocean as the water ebbs and flows along the beach & rocks.

Migrino Beach & Pacific Ocean

Desert Sunset

More posts to come soon! Adios!