Since many folks have expressed an interest in reading notes from our monthly HOPE virtual support meetings, we’ll be sharing them here as a blog post.

Here are our notes from our meeting on July 5, 2023. Our next meeting is August 2, 2023; you can register here.

1. One participant provided handout about the advantages/necessity of having both telecoil and Bluetooth on hearing devices. She noted that both technologies are important, because each can work well in different environments, giving you better hearing in a wide variety of hearing situations.  Audiologists too often promote only Bluetooth, and often don’t mention or give incorrect information about telecoils.   It is important to ask for both of them! 
   
2. Another participant is considering CI surgery and wondered if people had anything to share about their experiences.  People shared the following:

• A participant 2 CIs:  “I’m doing well with one, not so much with the other. I had problems with a facial nerve relating to one side, and have some difficulty using the phone. Rehab is important.”
• A participant with 2 CIs: “I had a very positive experience. Books on tape were useful. Patience is important.  It is all challenging and exciting.”
• A participant with 2 CIs: “It is the best thing I have ever done. It will take time.”
• A participant with 2 CIs: “Don’t give up. For some people it takes longer to adjust.”
• A participant with 2 CIs: “Others have commented how much better I hear and how much easier it is to converse with me. “
• A participant with 1 CI:  “Music is difficult and is one thing I lost. You can do music rehab.”
• A participant with 2 CIs: “Music rehab programs are getting better. I felt it was more important to understand speech than to hear music.”
• A participant with 2 CIs: “I gave up piano because it sounded harsh and discordant. Music sounds different but is still pleasurable. You may have to listen to different kinds of music to find out which music you still like.”
• A participant with 2 CIs:  “There is a great app called “Heard That.” It is good for eliminating background noise and for me works better than a mini mic.”
• Another participant’s comment on the “HeardThat” app: “I used it with 4 friends under a loud fan and could hear better than the others. It worked great, but did raise the level of the fan noise.”
• A participant with 1 CI: “I have problems with equilibrium and am fearful about falling. I also have problems with some robotic sounds from my device.  I am looking forward to improving with rehab.”
• Several users commented on robotic sounds with CIs and that sounds tend to sound more normal as time goes on.  Rehab can help and one user specifically mentioned Angel Sounds.
• One participant:  “I had CI surgery 5 days ago.  I haven’t had to take drugs other than Tylenol and am not in any pain.  I am looking forward to getting it turned on.”
•  There were nods of approval and general good wishes.

3. One participant said they went to a social event and felt different and sad about having to engage with people differently because of hearing loss.  Conversations in the car on the way to a rock concert were quite difficult. They were around people laughing and smiling, and they felt isolated and left out at times. It makes them feel sad/different, and it is difficult to have to engage with people differently.  

The participant was working at a Pride event and was able to communicate with deaf people using sign language. It was good to be able to communicate and sign with deaf people. The participant noted that there are days when they can dwell on the difficulties and challenges of communicating with people. But at the event with loud music, everyone was having a hard time hearing and repeating, “What?” “What?”  They felt left out and disappointed, but tried not to take it personally when people didn’t accommodate their hearing loss. They also went to a family reunion where people were telling stories about a recently deceased relative. It was very frustrating not to be able to hear many of the stories.

Another participant responded:  “We all sympathize. Smaller groups are easier for me. In big gatherings, try to take breaks.  And family and friends repeatedly don’t accommodate me even after repeated requests. All you can do is just accept them.”

4. A participant asked for news and feedback about HLAA convention in New Orleans from those who attended.

Participants shared this news:  Next year’s convention is in Phoenix.  The convention and workshop were great.  Every session has hearing loops/captions/ALS interpreting so you can hear everything. It is exhilarating to be around so many other people also experiencing hearing loss.  

There were classes on Bluetooth, telecoil, and personal success stories, one about a woman who had wanted to be an astronaut and whose hearing loss was discovered only after she joined the Air Force. Her talk was inspirational, and her story is in this month’s HLAA Magazine.  It is important to hear success stories of people with hearing loss. 

Glenda got a national award, as did Erlene!

There were many sessions on technology, but some of the most useful sessions were those on personal relationships. There was a class on auditory training, which stressed the importance of retraining. The convention hall was full of new products—apps, phones, captioned glasses and other things.

As part of our outreach, we visit health fairs, senior centers, and other places where people would benefit from learning about technologies to help hearing loss, find support for their hearing loss, and connect with people who are experiencing the same challenges.

This May, we connected with folks at the Federal Way Health and Senior Services Expo.

Thank you to HLAA-WA Treasurer Rick Faunt, HLAA-WA Board Member Sandra Bunning, HLAA-WA Secretary Glenda Philio, and HLAA -WA Member Bev Ziarko for taking time to meet with interested seniors.

We’re here for you. As always, please contact us if we can be part of your event, meeting, or fair: info@hearingloss-wa.org.

By Becky Montgomery

Hi all!

At the beginning of May, I Zoomed in to an HLAA-WA HOPE meeting.

I could rave on and on about how great these meetings are. This particular meeting, which focused on people’s experiences with getting medical care while dealing with a hearing loss, hit home for me. Normally, I’m pretty good with self-advocacy, but the doctor’s office turns me into quivering jelly.

A personal story

Last week, I went to see my doctor.

I approached the reception area where three people sat behind a tall counter, guarded by a plastic COVID screen, everyone talking at once, some even to a patient. Noise was everywhere. I prayed somebody would notice me soon, before I melted down and desperately pulled my Beyonce costume and drum set to get their attention. Thankfully, one of the receptionists finally pointed at me.

Me? I mouthed, pointing to myself. YES! My inner rock star started dancing.

I got to the counter, hoping to smoothly move on to see the doc and — guess what? — she’s wearing a mask. She said “Mmph?” then turned her face toward the computer screen.

I said, “I’m hard of hearing, can you say that again?”

She then said, “Mmph” louder.

I said, “I’m not sure what you asked.”

We looked at each other.

Finally, guessing what she needed, I gave her my name, date of birth, and the doctor’s name.

She said, “Mmph mmph.” I went on to the waiting room, anxiety beginning its familiar grip on my shoulders.

Joking aside, communicating with the staff at a medical office can be daunting. Even many so-called “help” articles actually coach hearing people on how to talk to people with hearing loss. It’s a bit odd, but the articles often mention that hard of hearing people get embarrassed about telling others that they’re hard of hearing. Embarrassed? I’m not embarrassed, I’m angry. Why don’t people simply respond better to us? It’s not rocket science, it’s just good manners to look at someone when you’re talking to them!

What’s worse is that my silly (mostly true) story of the reception desk is just the beginning. A visit to the doctor can turn into a gradual escalation of frustration and anxiety. It can leave you in tears, wondering if getting healthcare is worth the price you pay.

I’ve got good news. At the May 3, 2023, meeting of HLAA-WA’s Hearing Other Peoples’ Experience (HOPE), I heard stories that left me humbled and others that filled me with hope. One woman, who is Deaf, told a story about asking for a sign language interpreter when she made the appointment, only to arrive to find no interpreter and no offer of alternative help. Another person told us about missing an appointment entirely because she didn’t hear her name called in the waiting room. Since then, I’ve read many more similar stories: someone who, despite being traumatized by a new cancer diagnosis, struggled to write notes to an oncologist, and other people who had to schedule multiple appointments because clumsy communication takes much longer than the usual allotment of time for a single appointment.

On the bright side, I also heard success stories, such as one from two women (smart to go to the appointment together!) who asked a doctor to wear a clear face mask. To their delighted surprise, the doctor apologized and at once went to change his mask. Another person told about a provider who keeps tablet computers on hand for automatic voice-to-text transcription.

Hearing all these stories really, really helped. It isn’t just me; many of us find trying to communicate in a medical office horribly frustrating.

Here’s more good news: There are tips and strategies that can help you.

Tips for good communication at a medical office

To start, just pick one of these tips. Don’t get overwhelmed. If you’ve been doing these things for years, please feel free to add your own ideas in the comments below.

1. Think and plan ahead. When you make the appointment is the time to request captions, or an assistive listening system like a portable hearing loop, or ASL.

Imagine yourself going through the entire appointment experience.

• At the reception desk
• Walking back to the exam room
• Meeting with your doctor
• Going to a lab or imaging

And so on.

Picture yourself trying to communicate. What will it be like? What’s happening? What would help? Maybe a personal system such as a PocketTalker or a microphone that talks to your hearing aid or implant, such as a Roger device or Mini-Mic? A smartphone with a transcription app? Try to predict what you’ll need.

2. Right at the beginning of the appointment, remind the receptionist that you are hard of hearing and that you asked for communication support when you made the appointment. Ask if it was taken care of and remind them of what you need.

3. In the exam room, tell people that you are hard of hearing. They might not remember what you said, and they might not know what you want them to do. Tell them again. Repeat it as often as needed.

Ask people to:

• Look directly at you when they speak (I tell them that I depend on lip reading).
• Speak slowly (I tell them my hearing aids make words run together.)
• Ask you if you understand.
• Wear a clear mask, so you can easily see faces when people talk. If they say they don’t have any, ask them to double-check.

4. Bring a device you like to use, if you have one. For example:

• A smartphone with an automatic transcription app installed
• A streaming device such as a PocketTalker or an FM system
• A microphone that connects to your aid, such as a Phonak Roger device or a mini-mic (Cochlear LTD) or its equivalent for your implant

There are dozens of free speech-to-text apps that automatically transcribe captions for you. The apps are available for Apple and Android phones and tablets, and for PC-based tablets. For example, AVA is a widely used app available for both Android and Apple phones and tablets and also offers a web version you can use in a browser. There are also dozens of others. Some are free, some charge a subscription fee. Each has its own special flavor, and you might find you like having choices, using different ones in different circumstances. Choices are a good thing. Many of these technologies are free, so download a few and give them a try.

Apple and Android phones now have transcription/caption apps built in as an Accessibility feature. To start using either, you click a few settings (search on the web for instructions, often just two or three steps). Android devices have the well-loved “Google Live Transcribe.”  Apple recently downloaded a Beta version of a transcribe app for Apple 11 and later phones called “Live Captions (Beta).”

I hope your next adventure slaying the communication dragon at the doctor’s office leaves you feeling successful. If not, remind yourself that hearing skillfully is a road with no particular end, only rest stops along the way. At least we’re all on the journey together.

Becky Montgomery writes about living with hearing loss from a very personal place – she has progressive hearing loss. She managed with hearing aids for 20-odd years but now wears bilateral cochlear implants. “When you gain a disability as an adult, it opens up whole new ways of thinking about how we do what we do; it’s a great spark for creativity. How do people who can’t see or hear experience the world differently? How can we learn from each other, and learn how to help each other?”

Becky is now retired and works hard at catching up on her reading and movie watching. In the past, she worked at Microsoft, where she was deeply involved in the company’s Employee Resource Group for Disability. For pay, she also helped to make programs like Word more accessible for people who can’t see.