I was recently given a gift. It was a copy of the book, Fade Not Away: A Memoir of Senses Lost and Found, by Rebecca Alexander, a psychotherapist, who is deaf and blind from Usher syndrome.

It was story I read cover to cover without putting it down. I knew I had to ask her to be interviewed for a podcast.

Many times, the rhetorical question has raised its ugly head: Is it worse to be deaf or blind. Usher syndrome leaves its victim with both.

As Rebecca explains, there is often no timetable for the progression or the degree of the disease. Living under the sword of Damocles, one can be overwhelmed with anxiety or grapple with the problem head on.

Rebecca Alexander is an unstoppable spirit and an extreme athlete. She has summited Mount Kilimanjaro as well as the Inca Trail to Machu Picchu. As a therapist, her insights to her own condition and those who suffer from chronic complications are invaluable.

Her website is www.rebeccaalexandertherapy.com

Many who begin their investigation about cochlear implants are confused about the differences between cochlear implants and a device called a BAHA (Bone Anchored Hearing Assistance or Aid). They are under the impression that they can choose between these interchangeably.

The BAHA and the cochlear implant are designed for very different types of hearing loss and only the ENT or surgeon can make the determination based on a battery of tests.

I was fortunate to be introduced to Isabella Rodriguez, a recipient of a BAHA since the she was three months old. Her journey has been remarkable. She is amazing and explains the stages of her hearing loss and her decisions to make the best of her life. In fact, she is an inspiration and a prime example of an unstoppable dynamo.

I see nothing but a brilliant future for a very articulate and caring person. I am glad she took the time to talk with me.

Dr. Jack Wazen is an otolaryngologist in Sarasota at the First Physicians Group. He has more than four decades of experience. I interviewed him in 2019 on the topic of cochlear implantation for this website.

The current hot-button topic is Over the Counter (OTC) hearing aid. They were recently approved by FDA for sale in pharmacies and other outlets. These devices are designed for mild to moderate hearing loss and expected to expand the availability of hearing devices at a lower price than prescription.

They may be purchased without a professional hearing evaluation. Is obtaining a hearing aid without a medical exam be good or bad for the public? Is a lower price necessarily the only consideration for a person with a hearing loss?

I was glad that Dr. Wazen was able to sit down with me an opine on this issue and other aspects of OTC hearing aids.

For more than four decades, Dr. Herb Silverstein has been a leader in otology and has developed surgical and diagnostic procedures in the area of Ménière’s disease and hyperacusis. He is recognized as a world authority and patients come from all corners of the globe to consult with him.

President and Founder of the Florida Ear and Sinus Center in Sarasota Florida, he is also the founder and head of the Ear Research Foundation, which he describes in his interview.

Doctor Silverstein has more honors than space to describe them all. I was privileged to have him take time from his busy schedule to sit down for this interview.

I wanted to cover the basics of Ménière’s and hyperacusis and as a bonus within the interview, I learned of his leading role in the trials of FX322, and experimental drug being researched for its efficacy to restore the hair cells within the cochlea. This is a subject close to the heart of many with hearing loss hoping for a cure.

His love of research shines through this interview. That love will keep him going forward for many years to come.

Because less than five percent of those who could benefit from a cochlear implant either do not take advantage of the device or fall outside of the criteria for coverage, I am constantly seeking articles about coverage.

Donna Sorkin, the Executive Director of the American Cochlear Implant Alliance (ACIAlliance.org) recently did an online presentation about the changes in the criteria for adults covered by Medicare.

By dogged persistence and seven years of work and cooperation with surgeons, audiologists, and medical centers, as well as public input (including from one of the best known cochlear implant recipients, Lou Ferrigno) eventually and happily CMS, the administration arm of Medicare, broadened the criteria.

The American Cochlear Implant Alliance, founded in 2011, has a very diverse involvement with hearing loss and cochlear implants as you will learn in this interview. From information to rehabilitation, you will find it all at ACIAlliance.org

Thank you Donna Sorkin for your advocacy and for taking the time to talk to us. TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM

Resilience is an understatement when describing Susanna Dussling. Suffering from a severe hearing loss, possibly from birth, once diagnosed, her parents took every measure to be sure she was mainstreamed in school. The setbacks and triumphs of her hearing loss made Susanna develop a strong, independent personality. She needed it to survive in her personal life and in the world of business.

Her hearing declined and eventually she received a cochlear implant. She tells of how it changed her life.

An expert horse woman with a passion for show, her cochlear implant allows her to compete seamlessly and with aplomb.

Susanna as a child struggled with “deaf speech” but today thrives on presenting inspirational public speaking and training to organizations. Her theme is Bouncing Back with Susanna. Get ready for the ride of your life when Susanna tells of her hearing journey. TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANNTBASICS.COM

As soon as I finished recording this interview with Olivia Allen, I started searching for local flying instruction. Why? Because she reminded me of a long forgotten item on my to-do list from my pre-cochlear implant days; to learn to fly.

At the time, deafness intimidated me from accomplishing anything that required hearing. After listening to this remarkable cochlear implant recipient, I was inspired to accomplish that goal.

Deaf from birth, Olivia received a cochlear implant at eleven months of age. Since that time, as she noted in the interview, “The sky is the limit.”

Working her way to obtain a commercial pilot’s license, I think her story will inspire others to reach for their goals. A cochlear implant is the tool you might need to achieve your dreams.

I discovered Smriti through posts on LinkedIn. I was thoroughly impressed with her drive and ambition. Never slowed down by her bilateral cochlear implants, I asked her to sit down for an interview.

With a hearing loss at birth and a combination of hearing aids and speech therapy, her parents perceived the limits of that option and decided to have her receive a cochlear implant when she was four a half year old.

Smriti discuss the challenges and her parent’s decision to get the second side implanted when she was ten. She talks about the differences in rehabilitation for the second side.

Although I have interviewed parents of pediatric cochlear implant recipients, I was glad to have the opportunity to hear the story firsthand from a woman now in her twenties.

I hope candidates contemplating a second cochlear implant will find inspiration in Smriti’s story. I know I did. TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM

Debbie is a bilateral Cochlear Nucleus 7 recipient. Is also an amazing person. Her hearing loss was gradual so she does not know when it began but it was diagnosed when she was in college.

At the time it was a 10% loss. An annoying inconvenience. Next time she was tested it was 20%. With each successive test, her hearing loss grew and grew until it was 80% or more.

Now it was a severe handicap. Debbie persevered and continued her career albeit at a difficult and exhausting pace.

Eventually she considered getting a cochlear implant but she had a major complication, a condition known as Bing Siebenmann Dysplasia which lessened her chance of a successful activation.

Again, with her deep faith, she moved forward to achieve remarkable results and later decided for a second surgery to become bilateral. She now has 95% speech comprehension. TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM

Vinell has a long-term progressive, profound hearing loss. There is a genetic component within her family for hearing loss.

At one point she had to give up the career she loved as a legal secretary as she could no longer use a phone, take dictation and functioning within a conference environment was impossible for her.

She has not received a cochlear implant yet. Although she was scheduled to have surgery, family issues intervened, and she has delayed. She has not chosen a company. Her interview is important to those who have delayed for any of the reasons Vinell has cited here.

Her hearing loss has affected every facet of her life and it is poignant that when she is asked what would change in her life, she declares, “Everything!” TRANSCRIPT IS AVAILABLE AT COCHLEARIMPLANTBASICS.COM