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Friday, February 28, 2014

A Nice Surprise at the Audiologist

Yesterday, I had my six-month hearing aid check with my audiologist. While I was in the waiting area, I looked up and saw a television screen on the wall that hadn't been there at my last visit. The TV was showing information about hearing aids, but there was no audio and no captioning. Then, I saw this sign (shown at left) next to the TV. I had been to a hearing loop demonstration once, so I decided to give it a try. I reached up and switched the program on my hearing aids by simply pressing a button on one of them. Instantly I heard the audio of the program which explained the benefits of hearing loops and how they work with hearing aids and cochlear implants. I was impressed. Very cool! You can learn more about hearing loops and the Let's Loop America initiative at http://www.hearingloop.org//loopAmerica.htm

When I saw my audiologist, I got some good news. For a few months now I have been concerned that my hearing has dropped. I've been turning up my hearing aids and straining to hear more than usual. When I talked to my audiologist about this, she had some very reassuring words to say. She told me if she turned my hearing aids up 2 levels, I would be right at where she had originally programmed my hearing aids when I got them. She said it is very common for hearing aid wearers to need them turned down at first but over time as their brain gets used to the volume inputs, to have the hearing aids turned up.

She had me try my hearing aids turned up 1 level. I really could not discern much of a difference so I asked her to try another level higher. She did and that's where I am at right now. It was an improvement but not overwhelmingly so. She said that in her experience it's best not to adjust upwards of more than 2 levels at a time. She recommended I try it out for 2 weeks and if I didn't like it I could come back at no cost and have them turned down. I agreed to follow her plan. So far, I have loved the additional volume and feel quite comfortable with it. When I was in my sign language class last night, I was surprised at how much more I heard of my fellow students with their laughter, their side conversations, rustling of papers, etc. I really felt part of the class for the first time. I hadn't realized how set apart I had felt previously. So all around, I had a great visit to my audiologist.


Monday, February 24, 2014

An Exclusive Interview with Shari Eberts of Hearing Health Foundation

This post is a follow up to my previous post on the Hearing Loss Restoration project's new public service announcement. In this interview, Shari Eberts, Chairman of the Board of Directors for Hearing Health Foundation, answers my questions submitted through email. 

So you can put a face with the name, here is a brief YouTube video of Shari discussing her passion for the Hearing Loss Restoration project.  My interview with Shari starts below the video.


Sarah: Shari, what would you like to tell the readers of Speak Up Librarian about yourself and how you came to be involved in hearing loss research and the Hearing Health Foundation?

Shari: As someone who lives with hearing loss everyday, I am personally thrilled with the prospects for a cure. Life with hearing loss can be frustrating. Sometimes you miss the joke when everyone else is laughing and sometimes you miss important information because you don't hear it. Supportive family and friends can make living with hearing loss easier, but a genuine cure would be life changing. After having met and worked with our consortium scientists for these past two years, I am confident that we will have a cure in my lifetime. I am counting the days.

I first became involved with HHF in 2010 when I retired from Wall Street and was searching for a way to give back in the area of hearing loss. I have a genetic hearing loss, as did my father and grandmother, and I knew this was an area where I could make a difference. When I first heard about the Hearing Restoration Project, I was thrilled, and immediately wanted to be a part of it. I am in my third year as Chairman of the Board of Hearing Health Foundation and am even more excited about the prospects of a cure for hearing loss and tinnitus.

Sarah: When can those of us with hearing loss expect to see a biological restoration cure available at our local pharmacy?

Shari: HHF’s founder, Collette Ramsey Baker, was steadfast in her support of funding for new technologies and treatments for hearing loss, despite objections and doubts from supporters and those in the industry. Because of that commitment, HHF has been a leader in driving new innovations and treatments for people with hearing loss for more than fifty years. This includes funding research that led to the development of cochlear implants and many of today’s standard treatments for otosclerosis (abnormal bone growth in the ear) and ear infections. Today, HHF continues to support groundbreaking research in hearing, through the search for a biological cure for hearing loss and tinnitus.  

The HRP consortium of scientists has developed a strategic research plan to develop a cure for hearing loss and tinnitus in 10 years. This three-phase plan starts with discovery research and culminates in clinical trials. The plan, developed specifically by the HRP scientists and updated to incorporate new findings and approaches, is a living document meant to guide but not limit the work. Relevance to this strategic plan is one of the criteria for a project to receive HRP funding.

This strategic research plan assumes a 10-year time line to a cure for most types of hearing loss through the regeneration of inner ear hair cells. Currently we are in phase one of the plan, which is the discovery phase.   

Even though we are in the early stages of the research, we think it is very important that the public learn about our efforts. We want them to know that there is hope for a cure, and that there are researchers who consider curing hearing loss and tinnitus to be their life’s most important work. We hope our marketing efforts will help bring attention to the issue, raise awareness of the prospects for a cure and inspire other scientists and laypeople to join us in our support of this important research, so that we can find the cure as soon as possible.

Sarah: Will this cure benefit only certain levels of hearing loss – (for example, mild to moderate) or will it be effective for the full spectrum of loss (mild to profound)? 

Shari: There are two broad forms of hearing loss:  

Conductive Hearing Loss is caused by any condition that blocks or impedes the conveyance of sound through the outer or middle ear. The result is a reduction in the sound intensity that reaches the cochlea. Common causes include ear infections, a perforation in the eardrum, or even buildup of earwax. Generally, conductive hearing loss can be treated with a complete or partial improvement in hearing. 

Sensorineural Hearing Loss commonly occurs due to an injury or degenerative change in the inner ear and is currently permanent. Damage to the hair cells in the inner ear is the most common type of sensorineural hearing loss. The Hearing Restoration Project is focused on the cure for sensorineural hearing loss, through the regeneration of these damaged inner ear hair cells, and with it the regeneration of hearing.   

The amazing thing is that regeneration happens naturally and very robustly in almost all animals – mammals are the exception.  This makes HHF and the researchers confident that we will find a way to stimulate this regeneration in mammals, including humans. While ten years may seem like a long time, and it is for someone like myself who lives with hearing loss every day, it is realistically within my lifetime, and that gives me hope and excites me for the future. While we wait for the cure, we encourage people with hearing loss to seek treatment for the condition through hearing aids or other means, so that they can enjoy the highest quality of life possible, while they wait. 

Sarah: How can people with hearing loss get involved with raising awareness of this potential biological cure?

Shari: We hope our message will give people hope that the best scientists in the field see the cure for hearing loss and tinnitus as an important issue, and that they are working to make that a reality as soon as possible. We encourage people to visit our website, www.hhf.org to learn more about the research we are doing, the expected timetable, and to see for themselves the robustness of the research plan and the quality of the scientists that are attacking this issue.  We hope to have people join us in raising awareness for this work and in supporting our research efforts. 

Sarah: How can readers of Speak Up Librarian get involved with the Hearing Health Foundation? 

Shari: There are lots of ways for people to get involved with HHF!   
  1. Stay up to date on all the latest news from the lab by liking us on Facebook and following us on Twitter.
  2. Sign up for our informative monthly e-newsletter. 
  3. Subscribe to Hearing Health Magazine, our award-winning leading consumer publication on hearing loss.  Get the latest on research breakthroughs, strategies to manage hearing loss, personal stories, hearing technologies and products, and features on seniors, pediatrics, veterans, musicians and more. 
  4. Inspire others by sharing your personal story and draw comfort from the stories of others. 
  5. Create a fundraising event or giving page
  6. Make a tribute gift to honor a loved one with hearing loss or a favorite audiologist.
  7. Support our work with a tax-deductible donation.
Sarah: Thank you, Shari, for taking the time to share information about Hearing Health Foundation and the Hearing Restoration Project with my readers. I also want to let readers know that Dr. Andrew Groves will be discussing the Hearing Restoration Project at the Hearing Loss Association of America conference in Austin, Texas this summer.

Sunday, February 23, 2014

Who was Thomas Gallaudet?

Recently I wrote a paper for my ASL 2 class on Thomas Gallaudet. The assignment came about after a question was raised about the history of American Sign Language. In class when the teacher told us to look up who was Thomas Gallaudet, I already knew that he was the one with Laurent Clerc who brought sign language to America from France.  But while doing my research for the paper I learned much more about the man behind the history. I learned that accomplishing his goal was not easy. He faced obstacles and setbacks along the way but didn't give up because he believed he was living with purpose and for the benefit of others.

Statue of Thomas Gallaudet and Alice Cogswell
Photo credit NCinDC shared through Creative Commons license.

One of the most moving scenes in his life is captured in this statue (pictured above) on the Gallaudet University campus. Thomas Gallaudet met a deaf person for the first time when he was introduced to his neighbor's daughter, Alice Cogswell. Gallaudet perceived that she was intelligent and wanted to teach her how to read and communicate. Later Alice became one of the first students at the school he established upon his return from France.

I am not going to recreate my class paper here, but I do want to direct you to a resource I  found in my research. I recommend that anyone who has an interest in learning more about deaf education, the history of American Sign Language, or Thomas Gallaudet should read a biography written by his son, Edward Miner Gallaudet and published in 1888. This fascinating book includes many letters written by Thomas Gallaudet. There is even a letter from Alice Cogswell. The book is called Life of Thomas Gallaudet and is available to read online courtesy of the Disability History Museum at this link:
http://www.disabilitymuseum.org/dhm/lib/detail.html?id=1739

Thomas Gallaudet's legacy continues today. Gallaudet's school in Hartford, founded in 1817, is now known as the American School for the Deaf and has more than 4,000 graduates. Gallaudet University, founded by his son Edward and renamed in 1894 to honor Thomas Gallaudet, is celebrating its 150th anniversary this year. The school's latest enrollment figures are close to 2,000 students for academic year 2011-2012.

If you've ever wondered if one person can make a difference, the answer is yes. Just remember Thomas Gallaudet and be inspired to see what you can do with your life.

Friday, February 14, 2014

Elkhart's Hearts

Happy Valentine's Day, everyone!

Last month my friend Linda and I enjoyed seeing large hearts on display along Main Street in Elkhart, Indiana. In honor of Valentine's Day, I've posted my favorite of the photos I took. Underneath each picture is the title and artist. To see more of the hearts, check out my Have a Heart collection on Flickr. The hearts were created as a community fund raiser to support Elkhart General Hospital.

Which one is your favorite? Mine is Loving Care.

Love, Give, Bloom
by Joanna R. White

Loving Care
by Deb Ammerman

An Encourager
by Lauren Hodges
On the back it reads:
But never hurt the heart that loves you.

Rhythm and Balance
by Carrie Beachy

Let Your Heart Shine
by Katie McCormick

Wish Giver
by Rachel Schmidt

They Steal Our Hearts
by Roni Balthes

Heart Fishing
by Betty McKinney

Wednesday, February 5, 2014

Promise or Prophecy?

Here's a new promotional video for Hearing Health Foundation.



On their website, they say a cure is possible within 10 years. You can read more about their hearing restoration project.

Here is my reaction (speaking for no one other than myself):

I have mixed feelings when I think about this possibility. I've been wearing hearing aids for less than 8 years. Another 10 years in the future seems like a long time away to me. I wonder what my hearing will be like then? What will my tinnitus be like? Both have changed recently with my hearing dropping and my tinnitus increasing. It's difficult to imagine having my hearing restored. What would it be like to no longer have to use coping mechanisms and strategies to get along in life? What would it mean for me to stop inhabiting my quiet world?

I think the video is cute in a twitter & tweets sort of way with its title "Chirp the News" and the dialog "happy, chirpy lifestyle". But this is a serious issue for me and the loneliness and sadness are quite painful. On the other hand, I'm glad that research is being done in this area and I want to support those efforts.

What do you think?

Sunday, February 2, 2014

New Book of Stories from the Deaf and Hard of Hearing Community

I am really excited to share with you that a story by me has been published in a new book, A Student’s Guide to the Deaf Experience: Stories from the Deaf and Hard of Hearing Community. I was invited to submit a story by the book's editor, Michelle Jay of Burbank, CA. This book is the newest in a series Michelle has published called Don"t Just "Sign" Communicate through her company StartASL.

I chose to write about receiving my name sign in Costa Rica while on a trip with Discovering Deaf Worlds of Rochester, NY. My intention in sharing the experience was to give a bit of insight into my experience with Deaf culture and to help raise awareness for the nonprofit organization Discovering Deaf Worlds. I received no money for my story and I do not benefit financially from sales of the books so I feel free to shamelessly promote it to you.

When Michelle sent me a copy of the book, I was delighted to see stories included from several people I've gotten to "know" through their presence on the internet including
  • my best friend, Liz of Liz's Deaf Blog. Believe it or not, we didn't know each other was writing for the book until we got our copies in the mail. Too funny. But I must add I thought Liz's story about the highs and lows of coping with hearing loss was really well done. 

  • Joyce of Xpressive Handz whose submission about seeking accessible church services was quite eye-opening for me and I've seen it attracting discussion online. Bravo, Joyce.

  • SeekGeo who makes entertaining and thoughtful videos which include closed captions for those of us not fluent yet in ASL. He inspired me to start a YouTube channel of my own. My first videos there were created as a response to one of his videos. His contribution to the book about deaf stereotypes is a must read.

  • Wendi of Sudden Silence who writes about her experiences with a cochlear implant.

  • Amy, AKA Deaf Girl Amy, who talks about audiograms in an excerpt from her own book, A Survival Guide for New Deafies!

  • The always amazing, Karen Putz, who models for all of us what reaching for a bigger life looks like.

  • Charlie Swinbourne editor of The Limping Chicken, a deaf news site from the UK. 

  • Amy Cohen Efron, blogger/vlogger of Deaf World As Eye See It, a contributer on Deaf Read.
There are also stories from Deanna Bray, actress on "Heroes" and "Sue Thomas, F.B.Eye", Matt and Kay Daigle, the comic strip artists for That Deaf Guy, and more.

I feel humbled to be included with these people who have inspired me, encouraged me, and taught me in my own hearing loss journey. If you would like to know more about the book or order a copy, you can find it on Amazon.