Meet Les Paul Ambassador Saxophonist Chris Potter

By Yishane Lee

Chris Potter is a world-renowned saxophonist and composer who has been living with Ménière’s disease, a hearing and balance disorder, for two decades. We’re thrilled that he is our second Les Paul Ambassador.

The Les Paul Ambassadors were created with the Les Paul Foundation to honor guitar great Les Paul, who had hearing loss and tinnitus. The program promotes awareness of tinnitus and hearing loss and the search for a cure through our groundbreaking Hearing Restoration Project.

We profile Potter in our Spring issue of Hearing Health magazine. Here is an excerpt:

“I got Ménière’s disease in my mid-20s. I’ve lost pretty much all my hearing in my left ear—there’s just ringing. It was absolutely terrifying. I was getting episodes of dizziness, and my hearing would go up and down. In the meantime, I’d have to wake up at 5 a.m. and take three flights to get to a performance that night—when I didn’t even know if I would be able to stand up.

“It was very stressful, as was not knowing if it would happen in both ears, but I somehow made it through. It’s something you get used to. But the vertigo alone is life-altering. You don’t feel comfortable making plans.”

Potter tried various treatments with different degrees of success. He shares his story in an effort to show solidarity with other musicians who have hearing issues, and to help HHF find a cure for hearing loss and tinnitus.

Read more from Potter’s candid interview about being a musician with hearing loss and Ménière’s disease.

Learn more about the amazing Les Paul, who died in 2009 at age 94, and the industry-altering advances he made in the world of music production and technology. His dear friend Lou Pallo, a guitar hero in his own right, was our first Les Paul Ambassador.

Boston Marathon Bombing Inspires Family to Run to Cure Hearing Loss and Tinnitus

By Tara Guastella

Last April 15 was a life-changing day for the Campbell family—as it was for many who attended one of the greatest annual sporting events: the Boston Marathon. This year, the Campbell family is not only running their first ever Boston marathon but fundraising to cure for hearing loss and tinnitus. We wanted to share their story with you and hope you'll join us in supporting their marathon run.

Out of the 264 people injured on the day of the Boston Marathon bombing, the Massachusetts Office of Victim Assistance (MOVA) now estimates that at least 150 are experiencing hearing loss or tinnitus.

Jean Campbell is one those people, and this is her and her family’s story.

The days preceding the big race, a friend from Atlanta who was running the race stayed at the Campbell home in New Hampshire. Early the morning of April 15, Jean’s husband Christopher, his wife Jean, and their three sons Corey, Trevor, and Mitchell headed to Boston to watch the friend and several others run the race. (Corey has a mild hearing loss and Trevor moderate to profound hearing loss. Trevor wears hearing aids.) The family was split into two groups since the sons went to different schools and arrived at the race at different times. Jean and youngest son Mitchell were together and Christopher was with the two older sons, Corey and Trevor.

Chris, Jean, Trevor, Mitchell, and Corey Campbell

The two groups ended up on opposite sides of Hereford and Commonwealth Avenue while watching the race. After their friend Diane ran by, both groups started to head to the finish line on Boylston Street. Jean was busy taking photographs of other runners, and like any teenage son, Mitchell urged his mother to hurry up and the two began to bicker. Mitchell was eager to get to the finish line and starting to get impatient. “If we hadn’t been bickering, we would have been closer to the explosions,” says Jean, referring to the two homemade pressure-cooker bombs that exploded that day.

“That blast felt like a hurricane and immediately, it looked like a war zone,” she says. Jean has a sensorineural hearing loss in both ears, she instinctively leaned her “better ear”, the left one toward the first blast. “I knew immediately my hearing loss had worsened,” she says. As a result of the bombings, she also lost discrimination in both of her ears and her tinnitus worsened.

Jean and Mitchell ran for their lives clinging to one another. Jean immediately knew it was a bomb. “ I felt like we were in a movie,” Jean says. To get off the street, they ran into a Crate & Barrel store. “The very competent staff helped us escape through a back door,” she says. “They were incredibly kind and helpful. It was almost as if they were trained for it.” Jean adds that Mitchell remained very calm and collected throughout the day’s events, even after getting hit with a piece of shrapnel and his existing tinnitus growing much worse.

At the moment the blasts were occurring, Christopher and his two older sons happened to be taking a shortcut through the Sheraton Hotel to get to the finish line more quickly. “I couldn’t hear a thing,” Christopher says. “I didn’t even know the bombs had gone off.” Corey and Trevor were worried and frantic wondering where Jean and Micthell were. Since cell phone service was quickly overwhelmed following the explosions, the family could not contact one another. It wasn’t until 10pm that night—back in New Hampshire—that the family was reunited.

As soon as the blasts happened, Jean knew she had to see her audiologist at Massachusetts Eye and Ear Infirmary as she could not hear out of her right ear. She says she had the fleeting thought of trying to go to the hospital in Boston, but at the time it was unclear whether the entire city was under attack. “I needed to find the rest of my family and get out of there,” she says. Jean has bilateral hearing aids and is in a support group for people injured in the Boston Marathon bombings.

One year later, the Campbell family is running the 2014 Boston Marathon in support of Jean and her recovery. They are fundraising to support Hearing Health Foundation and our search for a cure for hearing loss and tinnitus through the Hearing Restoration Project (HRP). The Campbell family has lived through a traumatic event but since there had been hearing loss in their family, they feel they were slightly better equipped to handle the confusion and depression that can come with sudden hearing loss. “We think educating people about what to expect, and how to cope, is important,” Christopher says.

The Campbells are very encouraged by the strides Hearing Health Foundation and our HRP consortium have made so far toward finding a cure for hearing loss and tinnitus, such as early success with regenerating sensitive inner ear hair cells in adult mice that, in all mammals, once damaged through noise or age lead to permanent hearing loss.

Please join us in supporting the Campbell family as they tackle their first marathon and give hope for a cure within a decade.

One Woman's Grand Passion for Music

By Yishane Lee

Nancy M. Williams joined the HHF board in March of 2012 and has been an active member since. She coped with the loss as a child, accepted it as an adult, and now has become an advocate for hearing research—all experiences she writes about in the Winter issue of Hearing Health magazine.

Williams has had an interesting career, going from two decades of marketing and management consulting (after earning degrees from Stanford and Harvard Business School), to growing an online music community through her online magazine Grand Piano Passion. She won the 2009 Lamar York Nonfiction Prize for a heart-wrenching essay she wrote about returning to piano playing after a 25-year hiatus, and which has spurred her writing as well as playing.

In her article for Hearing Health, titled “A Grand Passion,” Williams writes:

In kindergarten, after I sang “Three Blind Mice” too loudly on the big rag rug in our classroom, I was diagnosed with a high-frequency hearing loss. My parents, worried about the social stigma, refused the recommended hearing aid, a decision that boomeranged when I reached middle school. “You can’t hear secrets,” complained a girl with green eyeliner at lunchtime. “Don’t sit with us anymore.”  

I was devastated. My parents broke down and had me fitted with an aid, a behind-the-ear model, bulky by today’s standards.

My parents had acted with the best of intentions in a society that tolerated hearing loss even less than ours does today. Yet the incident in the lunchroom stayed with me for a long time. To compensate, I rarely admitted to anyone that I had a hearing loss.

Playing the piano again, and writing about it, and joining HHF led Williams to finally be fully open about her hearing loss. To do it required overcoming decades of shame, which she writes about openly both in our piece and in her magazine.

Williams has also been very involved with helping other musicians with hearing loss. She’s a huge asset to our organization, offering strategic advice and tips both as a businessperson and a consumer who uses hearing aids. We hope that you enjoy her story in the Winter issue, part of a special package about music, musicians, and hearing loss and tinnitus.

Cue the Music

By Yishane Lee

Along with wrapping up holiday gifts, we are also busy wrapping up the Winter 2014 issue of Hearing Health, available in January.

Our cover story is about legendary guitar great Les Paul, and the launch of the Les Paul Ambassadors. The Les Paul Ambassadors are an exciting partnership between HHF and the Les Paul Foundation to support our search for a cure for hearing loss and tinnitus as well as educate consumers about this topic. We’re thrilled that Lou Pallo, a longtime friend of Les Paul and a talented musician in his own right, is our first Ambassador helping to spread the word.

Les Paul, who had a hearing loss and tinnitus, is the inspiration for our special music issue. Enjoying music can be a challenge for people who have a hearing loss, partly because hearing aids favor the voice of one speaker above background noise, and what is music if not many speakers and a lot of so-called noise?

As staff writer and audiologist Barbara Jenkins more eloquently explains:

“Hearing aids have been developed to maximize clarity of speech understanding, but to do this they must reduce non-speech sounds—which are the very elements that enhance musical or environmental sounds. Even though you may hear music better with your hearing aids than without them, most speech enhancement programs by necessity end up distorting music.”

Jenkins has plenty of helpful tips for optimizing your hearing aids to enjoy listening to music, and beyond merely engaging the music program in your hearing aid. Look for “The Sounds of Music” in our Winter issue.

You have probably heard of the cochlear implant (CI), but what about the hybrid CI? It can also help users enjoy music. The hybrid makes use of—and aims to preserve—residual hearing. Particularly in age-related hearing loss, residual hearing is usually in the low frequencies. So by combining this residual, low frequency hearing with high frequency hearing that has been amplified by the implant, the hybrid CI user has a fuller, rounder hearing experience.

Look for our story about hybrid CIs, written by Lina Reiss, Ph.D., a 2013 Second-Year HHF Emerging Research Grant (ERG) recipient, along with an ERG alumnus, Christopher Turner, Ph.D., who has published more than 20 papers on the topic. In addition, researchers at the University of Washington recently announced a new harmonic algorithm that allows CI users to better hear music, which we will detail in “Hearing Headlines.”

Finally, we have contributions from musicians who have hearing loss. Wendy Cheng started an association of amateur musicians with hearing loss, now 10 years old, and Nancy Williams is a member of HHF’s board and a pianist who has performed at New York City’s Carnegie Hall. Underscoring all these stories is the work our Hearing Restoration Project, which is working toward a cure for hearing loss and tinnitus—and the ability to once again enjoy music to its fullest.

Don’t miss out on all this and more - subscribe  to Hearing Health magazine for free today!

"Listen to Me, Right Now!"

By Yishane Lee

As a parent, I constantly think that my children aren’t listening. The number of times I repeat myself endlessly (usually accompanied by an escalation in volume) before I get an answer is enough to drive me bonkers. But a child who isn’t listening to you can be a sign of something more than a clash of wills.

If you find that your child doesn’t respond to repeated entreaties—especially when you’re not facing her—it could be a sign of a hearing loss.

It is one sign that Hearing Health magazine staff writer Barbara Jenkins, Au.D., BCABA, includes in her list of the most common signs of hearing loss in children of different ages, from infants to teenagers.

Despite universal newborn hearing screening in hospitals—an effort that HHF spearheaded in the 1990s that has been critical for early intervention treatment—hearing loss can be progressive and appear in children after you go home from the hospital and into the school years.

For instance, a baby who doesn’t react to a sudden noise, such as a toy dropping to the floor, may have a hearing loss. Evolutionarily speaking, humans (and all animals) make sounds in reaction to hearing sounds, so a hearing loss can be indicated when a baby does not make word-like sounds, such as “gaga” or “dada” by 10 months of age.

In fact, speech milestones are critical for making sure your child’s development—and hearing—are on track. (Also important is talking directly to your toddler, too, according to a new Stanford University study.) Talk to your pediatrician if you have any concerns, no matter how slight. A study in JAMA Otolaryngology-Head and Neck Surgery found that parental concern and school hearing screens helped diagnose hearing loss after passing the newborn hearing screening.

As your child ages, there’s more opportunity for social interaction as well as picking up illnesses. Ear infections (otitis media, or infection of the middle ear) are one of the most common childhood infectious diseases requiring antibiotics. In young children the Eustachian tube has not fully developed, leaving the middle ear more likely to retain fluid that in the ears of older children gravity flushes out.

Since infections can last one to three months, with fluid blocking the ear, during that time hearing and speech both become impaired.

This can delay language acquisition and lead to learning issues. Left untreated, children who are prone to chronic ear infections are at risk of permanent hearing loss. Some of our 2013 Emerging Research Grant recipients (Ravinder Kaur, Ph.D.; Ani Manichaikul, Ph.D.; and Merri J. Rosen, Ph.D.) are working on developing a vaccine, identifying genetic predispositions, or otherwise mitigating the effects of this serious health issue in children.

Placing ear tubes in the ear are a common remedy for children with chronic ear infections. It’s a simple surgery, but requires general anesthesia, and repeated surgeries may be required if the tubes fall out. Our otolaryngologist recommended that my son, then just over a year old, get tubes to help with chronic fluid in the ear (without infections). But I couldn’t bring myself to do surgery when the ailment was something he would eventually grow out of. That said, it is a common, safe surgery that many children have benefited from.

Ear infections can be an obvious sign of potential hearing loss. So can needing the TV or stereo volume turned up, tilting the head forward, or having difficulty at school. Your child may even tell you straight out that he can’t hear you. As Jenkins writes, “This may seem obvious, but many parents assume that their children are not paying attention when in fact there may be an unidentified hearing loss.”

Review the signs your child may have a hearing loss here, and share your experience parenting a child with hearing loss below.