Hearing Loss: Come introduce yourself and connect with others

That is just amazing that a disability that affects so many people around the world was not being researched before 1988.
Hopefully they can put a sense of urgency in to their research and things might accelerate.
Getting along with my Signia IX 7 hearing aids. They are better than the AX platform. Hoping the new platforms they are working on are even better. Seems like every 18
months they make a new breakthrough. At only $1,800 for the pair I can take advantage as soon as they do.
Thanks for thoughtful response to my questions. I love the interaction. .

That is just amazing that a disability that affects so many people around the world was not being researched before 1988.
Hopefully they can put a sense of urgency in to their research and things might accelerate.
Getting along with my Signia IX 7 hearing aids. They are better than the AX platform. Hoping the new platforms they are working on are even better. Seems like every 18
months they make a new breakthrough. At only $1,800 for the pair I can take advantage as soon as they do.
Thanks for thoughtful response to my questions. I love the interaction. .

It's amazing to realize how little research was being done on hearing loss/deafness until President Reagan signed the documents that created the National Institute on Deafness and other Communication Disorders in 1988. (NIDCD) within the National Institutes of Health (NIH). Compared to institutes established to study other health issues NIDCD is very new as most others were established nearly a century ago. Mentioning this only because true research on how the auditory system works was not done much prior to 1988.

HLAA was established in 1979 and started the movement towards advocacy and change. HLAA was involved in writing the ADA relative to communication access, which prior to that time was basically known as manual communication.

Those of us who were diagnosed with hearing loss prior to that time were told for the most part that hearing loss was incurable because the auditory nerve was damaged, AND nothing could ever be done to change that because of the location of the hearing mechanism being within the brain. The only research that was being done was on cadavers. Wow!

Thanks to NIDCD, HLAA, The Hearing Health Foundation (HHF) and a few universities that established programs of 'hope for the future of hearing issues', we've come a long way in the past 40+ years. Hearing aids now do more than amplify. A variety of hearing assistive technology that goes beyond hearing aids is available now. Cochlear implants, which were laughed about 45 years ago are now used to bring back hearing to thousands of people. One of the most amazing discoveries was that in most instances, the auditory nerve was not damaged. It was not being stimulated by the cells in the cochlea so was dormant. Those cells cannot be regenerated but Cochlear implants can bypass them to stimulate that nerve and hearing can be regained. Is it perfect? No, but it is darn close.

Among technologies are some old ones that work by bringing desired sound directly to our hearing devices. Telecoils do that when used with hearing loops, FM systems, IR systems etc. I use telecoils in my hearing aid and in my cochlear implant and can hear very well in settings that provide the systems needed to connect them.

We hear that low E BlueTooth and Auracast are coming and will do the same things that the tech mentioned does in a different way. We are all for that, but the reality is: WE WANT TO HEAR NOW! Not sometime in the future at the expense of hearing now. I have Auracast built in to my N8 Cochlear processor. It is worthless to me because Auracast is not yet available. The prediction is 'several more years'. By then, I will likely need to upgrade my personal technology. Realize that Auracast transmitters will have to be installed. Using what is already installed now is logical.

In my area we have hearing loop technology in most churches, meeting rooms, our performing arts centers, high school theaters, etc. That has happened because people educated and advocated for it. The Americans with Disabilities Act mandates that public venues be communication accessible but requires that the people who need it must request it in advance of need. That means speaking up to let those venues know this is an expected accommodation. They are not going to provide it if you don't do that. That also means that people with hearing loss have to come out of the closet and talk about their hearing loss needs. Unfortunately, most hard of hearing people prefer to hide it.

You ask if I think a cure for hearing loss is coming. Yes, I'm aware of research being done in Europe and in the USA that is making progress in mice. We humans are a bit more sophisticated in our biology than mice, but it is certainly encouraging. I do think there will be a cure for sensorineural hearing loss someday. I doubt it will happen soon. I believe that presently cochlear implants are the best solution for people who have severe hearing loss. Those who have trouble in social settings due to background noise, etc. I've known a couple people who refused to go the CI route because they truly believed that a 'cure' would come in their lifetime. It didn't and both of those people have passed away. I've had a CI since 2005 and the only regret I have is that I didn't have it done sooner. It has been life changing for me.

The incidence of hearing loss in the general public has increased considerably due to noise in the environment. Protecting one's hearing is so important.

If a cure were to come in my lifetime, I'd be first in line to get it! 🙂

What have you heard about a Bipartisan bill put forth by Senators Amy Klobuchar and James Lankford that would make Medicare pay for Esteem middle ear fully implanted hearing aids?
This would open up a whole new way to address hearing loss by categorizing them as prosthetics.
I would love to hear your thoughts on this technology. This country has been remiss for too long in making life easier for the millions of people who suffer from the crippling disability of hearing loss.
CI’s and hearing aids are a start but we deserve better from our country.
Does this technology exist and if so wouldn’t it be nice if we didn’t have to take our hearing aids out every night and we could go swimming and do other activities without worrying about damaging our CI’s or hearing aids?
I welcome your comments or ones from anyone else in the group.