Hearing Loss and Tinnitus Support Groups

In today's episode, we talk to leaders from three prominent hearing loss and tinnitus support groups, Tinnitus Hub, Hands & Voices, and the Association of Late Deafened Adults. Whether you are suffering from the effects of hearing loss or tinnitus personally, or have a child or loved one experiencing hearing-related issues, today's episode is a great place to start. These groups are filled with supportive, caring, like-minded individuals, and we can't wait to share their stories with you!

Podcast transcript

Steve Taddei: In this month's episode, I wanted to take a step back and talk about some of the many organizations out there for people with hearing disorders. These groups provide so many invaluable resources. And I honestly think that they're underutilized simply because people aren't aware of them. So let's change that.

I had the pleasure of speaking with three of the many organizations out there, Tinnitus Hub, Hands & Voices, and the Association of Late Deafened Adults. After speaking with these groups, I was amazed at how truly selfless they are. And if there was one unifying message, it's that regardless of your hearing, you are not alone.

Steve Taddei: Have you ever been going about your day when all of a sudden one ear seemed to go dull and you begin hearing this high pitched ping. After a few seconds of this weird sensation, you're hearing returns to normal. I know this happens to me and it can be pretty alarming when it does. Fortunately, this is rarely something serious and it falls under the category of spontaneous ear noise.

In fact, most of the population experiences this every now and then. And you can chalk it up to random neuronal firings. But imagine if you heard a ringing or buzzing noise like that all the time. While at work, while working out, and even when trying to sleep, What we're talking about here is tinnitus and it is a daily reality for millions of people around the world.

Hazel Goedhart: It's generally described as ringing or buzzing in the ears. And another description you often hear is the perception of a sound that is not externally generated. So the sound doesn't come from the environment, but it comes from inside you. Basically that's the most basic description.

Steve Taddei: That was Hazel Goedhart, the Director of Tinnitus Hub, a nonprofit organization that focuses on education, connecting patients, and furthering research all around tinnitus.

Hazel Goedhart: I think what many people don't realize is just how many forms of tinnitus there are. The most common one is a high-pitched ringing. Some people hear like crickets or typewriter-like noises or even musical noises. Some people even experienced three or four different noises at once.

There really isn't enough understanding of the causes of tinnitus .By causes, I mean the mechanisms in the ear and the auditory pathway and the brain that creates the tinnitus signal. There's a number of theories out there, but there's certainly no unified or coherent view on it. So that's definitely one of the, one of the issues.

Steve Taddei: Anyone who's familiar with tinnitus probably knows that there's a lot of uncertainty around the topic. And as Hazel just mentioned, there's still a lot that needs to be uncovered.

Sometimes I like to think of tinnitus as the runny nose of our hearing system. And by that, I mean that it can be caused by so many different things. Tinnitus can be associated with hearing loss, stress, medications, diet inflammation, as in the case of ear infections or chronic jaw issues. It can be a sign of acute injury to your hearing system like that fuzzy ringing feeling in your ears after you leave a rock concert, it can be a sign of serious medical issues. Or it can be something that you were born with.

In fact, much of the population will hear some type of tinnitus if they're in a quiet enough space. You can try this right now in fact. Walk into a quiet part of your house. This will likely be a closet due to all the hanging clothes absorbing sound. And just stand there for a minute.

Can you hear anything?

So what is Tinnitus Hub and where did they get their start?

Hazel Goedhart: I think Tinnitus Hub was born from the fact that there are so many people around the world who suffer from tinnitus. And the fact that the treatment options really aren't that good. And it's frustrating sometimes to see how tinnitus is talked about in the media.

Often the story will go something like Bob suffers from tinnitus. He had a terrible time with it. He couldn't sleep, but then he got used to it and now everything is fine. You know, something like that. I'm sort of maybe exaggerating a little bit. But there's still a significant group of people that really struggle from day to day for many, many years.

Steve Taddei: Tinnitus Hub serves as an information and support community for those who are suffering in this way. What we do basically is we offer peer to peer support. So the tinnitus talk forum. Where people can connect online, form an online community that supports each other. They keep each other up to date on research news and treatment news. And yeah, just provide emotional support to each other.

Hazel Goedhart: I think what we hear most often is that people come on to tinnitus talk and for the first time they feel understood. They feel heard. I think that's the biggest thing for many people, because they will talk to their doctor who kind of dismisses them. They will talk to friends and family and relatives who either really don't even understand what tinnitus is or they will say something like, "oh yeah, my brother hears a noise sometimes, but it doesn't bother him", you know, or something like that. And that's like, okay, that's great for your brother. But what I have is different, you know, and they just feel like, okay, why is no one, you know, understanding what I'm saying here, that I'm just hearing this continuous unrelenting noise in my head that won't go away. That's always there. That I can't escape from.

Steve Taddei: Tinnitus Hub also offers other channels of information such as their podcast.

Hazel Goedhart: We have the tinnitus talk podcast, which mostly focuses on research news, but also personal stories and information about tinnitus healthcare. What we are hearing from the tinnitus community is we want more research that is specifically focused on developing better treatments and specifically treatments that actually treat the root cause and not just the symptoms, you know, not just the distress that you're feeling from the tinnitus.

Steve Taddei: Tinnitus Hub uses the reach of their online community to collect data through surveys. And they share this information with researchers facilitating the future of their cause. So being a part of the Tinnitus Hub community is really being a part of the solution and hopefully finding better treatment options for tinnitus down the line.

Hazel Goedhart: The only sort of real treatments out there are more meant to help you cope with the condition or manage it. But it's really more like learning to deal with your emotional response to the tinnitus signal. But there's really nothing apart from a few anecdotal stories here and there that people feel like they got cured by taking some supplements.

People often they don't even get offered that. They just get told by their doctor "Well, you have tinnitus. Um, And there's nothing we can do about it. So you just have to learn to live with it." And that's the story we hear time and time and time again, that people really feel dismissed, not taken seriously.

Steve Taddei: When we consider current tinnitus treatment options, there is hope. There are fantastic technologies, coping mechanisms and programs out there. However, as Hazel stated, most of them aim to reduce the annoyance and negative emotional response associated with tinnitus. So our goal isn't to eradicate tinnitus completely. Rather, the aim is to change your emotional response to your tinnitus. That way, when you hear it, it doesn't trigger high levels of anxiety and stress. The more effective treatment options involve education, stress reduction, and other forms of behavioral intervention. Now, if you're thinking that sounds like a lot of work, don't worry. There are lots of options out there.

And many people experience tinnitus relief by visiting an audiologist and simply treating their hearing loss. Studies have also shown that better information and stress management can help tinnitus. Not surprisingly the best approach is finding what works best for you.

Hazel Goedhart: When it comes to tinnitus management I always tell people, try to find what works for you. If you want to see a therapist, it doesn't even really matter what approach they use, but it's important that you feel taken seriously, that you feel, you know, safe with the person.

Some people might benefit from taking long walks and doing yoga. Some people just need to talk about it a lot. You know, some people need to distract themselves with activities that they enjoy. I never want to make it sound like, oh, anyone can do it. You know, just try to get over it and just go on with your life, and everything will be fine because I feel like that's trivializing the struggles that, that some people go through.

Steve Taddei: We generally think about hearing loss as a disorder associated with age. We're familiar with seeing sitcoms newspaper comics and modern animated films depicting elderly characters with hearing difficulty. However, this is not always the case, roughly three out of every 1000 children born in the United States have some form of hearing loss.

I recently spoke with Janet DesGeorges of Hands & Voices. They are a parent led nonprofit organization that's dedicated to helping families of children who are deaf or hard of hearing.

Janet DesGeorges: Hands & Voices is really a community of parents and professionals and deaf and hard of hearing adults who often talk about Hands & Voices as having found their home. You can tell by our name, Hands & Voices... we're an organization in the world of deafness that provides resources, support, information for families across the modality spectrum.

Steve Taddei: This involves topics and support in hearing technology, language acquisition, cued speech, American sign language, and the overall process of making sure your child is happy and growing.

Janet DesGeorges: First of all, I would always want parents to understand and know that you're not alone. Hearing loss is considered a quote low incidence disability. And so in general, uh 90 to 95% of the kids who are born with hearing loss are of hearing parents. And so I think for most of us, we start this journey in a bit of a vacuum. In general. We don't have people in our lives around is that kind of understand what we're going through.

Steve Taddei: For Janet, this is not just statistics and hearsay. To illustrate what's at the core of Hands & Voices, Janet shared her family story with me. This involves her three daughters and more specifically Sarah, her third daughter who was born with hearing loss.

Janet DesGeorges: We had two hearing daughters before our deaf daughter was born. And I, I have to admit that I don't remember ever really thinking about whether my children could hear. Her age of identification was at the age of two. And this was a result of time passing in our family with three small kids where questions began to arise in my mind about Sarah's ability to hear.

There was about an eight or nine month period of time where some things would happen. For instance, I would come into her room and she'd be facing the other direction in her crib. And when I'd say hi, Sarah, she wouldn't turn around until she saw me. It was through that period of time that I always look back with regret on because it was a period of language development we could have helped her with, but I tended to just, you know, I, I tried to just ignore it and think, oh no, she's okay. And so, um, that was a p... a real period of time of personal and emotional struggle. But once we found out she was deaf, of course, we went through sort of the emotions of what that would mean to her life. And that's, I think a part that all families go through.

I think coming to terms with hearing aids was also the emotional part of our journey in the beginning, because it was the physical representation of the quote disability. And I, I think for me, I had rarely in my life met anyone who was deaf or hard of hearing as a child. So I think we always think about hearing aids as something old people wear. But we had really good audiologists by our side. We had really good early interventionists that kind of helped us through that period of time in terms of our decision-making around use of sign language, the use of hearing aid technology and things like that.

Once we began to understand the importance of hearing health care, I began to understand as a parent, some of the things that were impacted by Sarah's hearing loss. So for instance, incidental learning. So we know that 80 to 90% of learning in the classroom is learned by kids incidentally, not just what they're hearing from the teacher, but overhearing conversations from others, the ability to be in a small group and talk back and forth and hear what others are saying. And so it was kind of eye opening for me.

Steve Taddei: Janet's personal experience with hearing loss drives her passion to help others. She's committed to improving awareness, early detection and advocacy. Hands & Voices has helped give her a platform to do this along with other parents. So people get the support they need.

Janet DesGeorges: Families going to our website would first find a map and you would click on the state that you live in and you would be able to find parents in your area who have been through this journey. And Hands & Voices has a program called guide by your side. And these are parents of kids who are deaf or hard of hearing. And also who have had some basic level of training around how to provide support. And our organization uses the terminology of unbiased, which means we're there to support families without trying to manipulate towards decisions. So the first thing families will find is a safe place to bounce their own feelings, thoughts around that towards other parents.

We know that information to knowledge brings power. And so we have a lot of information and resources. We just have hundreds of articles on our website that talk about the experience of parents and deaf hard of hearing adults.

Steve Taddei: Hands & Voices has resources for nearly everything imaginable. A few that stood out to me is the educational program called ASTra, which stands for advocacy support and training. This is geared towards school aged kids and helping make sure your child is receiving appropriate access to education.

There's also the observe, understand and respond project. This resource is all about safety as children who are deaf or hard of hearing are at higher risks for both abuse and neglect.

There's also a movement called fostering joy, which focuses on the bright side and magic of raising children. This program helps parents focus on being loving and making lifelong connections with their childen.

Janet DesGeorges: I really like to talk about Hands & Voices in terms of a safe place for families to receive support. Why is it important for parents to advocate for this? Because the person watching this the most is our own kids. Ultimately that journey that I, as a parent have been through, raising a daughter who is hard of hearing, ultimately it's her own journey.

Steve Taddei: So far in this episode, we've spoken with Hazel of Tinnitus Hub and Janet from Hands & Voices. Both of these organizations serve a very specific and important purpose within the world of hearing disorders. The last organization I spoke with is no different and it supports another underserved community. I spoke with Ken Arcia, the president of ALDA, or the association of late deafened adults.

Ken Arcia: So ALDA in general, as far people with a more profound hearing loss. Our philosophy is whatever works. So you have people who sign, some who lip read, some who write back and forth, some who gesture, you know, whatever works for you. When people come to our conference, they say, "Wow". They're not limited or put in a category. It's just wide open. We welcome anybody.

Steve Taddei: A key difference about ALDA is that they support late deafened adults. This refers to people who have more significant hearing issues and lost their hearing after acquiring spoken language. If you have normal hearing now, imagine if that changed tomorrow. You've relied on verbal communication your entire life, and now it's gone. What if the most powerful hearing aids didn't make speech clear? What if you also, weren't a cochlear implant candidate? ALDA is a community of people who are facing or have faced these exact issues.

Ken Arcia: Part of what, what ALDA does is, you know, you're finding others like yourself. You know they have monthly or quarterly meetings, talk about different topics sometimes related to technology like cochlear implants or new technology, like speech to text apps are really important right now for people with hearing loss because with COVID everybody's wearing a mask. So we can't lip read. So a lot of people are using speech to text apps. So those are very helpful.

Steve Taddei: Ken shared with me what it was like for him to lose his hearing in his early twenties.

Ken Arcia: When I became deaf at age 21, I had surgery to remove a couple of tumors that were in the middle ear. I was age 20 when I had surgery on the right ear. And I got back some of my hearing, but on the left ear, the following year, when I was 21, the tumor was more wrapped around my different nerves, including the auditory nerve. So they had to cut the nerve, take out the tumor, then they reattached the nerve and it never worked again.

For a couple of years after my surgeries, I was in denial, you know? Oh, I'm fine. I'm fine. Then I realized I was missing a lot. So I contacted the department of vocational rehab in California. They helped me get evaluated for a hearing aid on my right side.

Steve Taddei: Amplification helped Ken, but he also learned American sign language, which further improved his communication with others in the community. Ken recommends other people consider learning ASL and classes are offered through ALDA.

Ken Arcia: I think the biggest benefit, what I've found for learning sign language was, uh, it helps you communicate with others of course who know sign language and there's less chance for misinterpretation, miscommunication, misunderstanding, things like that. I mean, once I learned sign language and I'm talking with other deaf people, I've found my stress level, just drop, you know. Ah, I'm just comfortable signing.

Steve Taddei: On top of the resources available through their website and local chapters, ALDA also has an annual convention that has been dubbed ALDACon. People come from all over to learn and socialize. There are guest speakers, vendors, and workshops. On top of all that, there is also a special event that may surprise you.

Ken Arcia: Starting in 1992 was the first time we had Karaoke. Announcer: These guys are really good... [indescriminable speech, singing, and laughter]

Ken Arcia: The importance of it is that you think about people who lose their hearing. They grew up listening to music. They knew music. They understood music. But when they become deaf, they miss that. They lose out. So karaoke is sort of like captioning for music, right?

What we did is we adjusted it to our needs. We set up onstage. We have the monitor for, ya know the words, for people on stage. It's always a group of people up on stage that will be singing or signing or both and just dancing, have fun up there. And then from those monitors, we run out to projectors and we show the words on two huge screens for the audience. And everybody really enjoys it because they see the words, you know, like, oh, I remember that song, you know, and get up there and now they perform or not, but they enjoy themselves. And you can usually tell when a person became deaf. Depending on which song they request.

The other thing that's really cool about karaoke is in 1995, the first conference I went to, one of the guys went off to the restroom and on the way back, you saw on the conference next to ours, they were having a wedding. And so they had a lot of balloons. And so he went in and he asked, can I take a few of these balloons?

And they were almost done and they're like, sure. Take em... take em. So he brought a few into our ALDACon karaoke and he started giving them out and people are like, what is this for? He goes, "just feel the music" and they could feel the rhythm. So people like us are more profoundly deaf can feel the music and enjoy it moreso with the words and the vibrations and the balloons. Ever since then, we make sure we have balloons at our Karaoke.

Steve Taddei: This is a really cool experiment that you can do right now. Find a balloon, blow it up and play some music. You can actually feel the sound. This happens because hearing is just our perception of extremely tiny vibrations of air pressure. Those vibrations start with the source, travel or propagate through the air and interact with our hearing system. By blowing up and holding a balloon, you've essentially made a very large eardrum ... a stiff, but lightweight surface that moves sympathetically with the air vibrations. And don't worry if you don't have a balloon, you can try this with a styrofoam plate, plastic cup, or even something like a piece of paper

Ken Arcia: I'll borrow a phrase one of the other guys said... at one of the first conferences I went to is, uh, we say "lost my hearing, found a family". So that's what ALDA's all about. Cause you get to find other people who are like yourselves and you can act, and you can both learn from each other, provide this support to each other. It's very common for people who lose their hearing to become depressed because, you know, we get so stressed out trying to communicate. Often people will self isolate, so if they can find ALDA or find other, any support group that will help. ALDA saved my life and really I wouldn't be here without it. And it's just, I love it. And, uh, that's the connection I would share with other people.

Steve Taddei: This episode covered just a few of the many organizations out there for people struggling with hearing disorders. If you're in need of help, just ask. These groups are filled with supportive, caring, like-minded individuals. These groups have websites, Facebook groups, podcasts, conferences, and more. So you can reach out and get involved in whatever way works best for you.

I'd like to thank our guests, Hazel, Janet, and Ken for speaking with me and sharing their stories. If you'd like more information about Tinnitus Hub, visit tinnitustalk.com. You can create an account and receive their newsletter with regular updates. If you are a parent of a child with hearing loss, you can visit handsandvoices.org. If you are facing significant communication issues due to the severity of your hearing loss, head over to alda.org. That's ALDA.org.

The Hearing Tracker Podcast is hosted by me, Dr. Steve Taddei. Each episode, we reach out to people with hearing difficulty and or industry leaders to talk about the hearing system, innovative technologies and what's to come.

This episode was written, produced, and sound designed by me with help from Abram Bailey, Bruce Smith and TJ Belek. If you liked today's episode, please consider leaving us a review and sharing this episode with someone who is struggling with their hearing. If you have a unique story related to your hearing, or if there's another show topic you'd love to hear, share it with us and send a line to steve@hearingtracker.com.

Finally, you can find much more helpful content and keep up to date by visiting us on Facebook, Twitter, or HearingTracker.com. Thanks for listening.