10 Things You Can Do for Tinnitus

Tinnitus is on my mind today and that’s because I’m off the grid, in the middle of nowhere at my parents house.  How quiet is it out here?  Many years ago after they finished building their house I came to visit.  We were on the porch, everyone talking and I kept hearing a noise.  It was indescribable and it drove me nuts not knowing what it was. I stopped the conversation finally to ask “What is that?”  And of course everything sounded normal to them so it took a bit to pin down the noise I wanted.  “There!  That noise,” I yelled when I heard it again.  My mom said,  “You mean hummingbirds?”  I was aghast.  I could not believe how loud they were.  At home I couldn’t hear them due to traffic or city noise so I guess I forgot what they sounded like.  


Today it’s early February so isn’t porch time yet. My parents aren’t listening to the radio as they normally would avoiding today’s political environment.  None of us watch TV much either so it’s quiet in the house too. I hear my tinnitus all too well.  My tinnitus sounds like cicadas, crickets and has a high pitched squeal 24 hours a day , 7 days a week.  Luckily I habituated years ago so it’s not driving me crazy but it is noticeable.  


Memories of tinnitus are drifting in and out.  I remember when tinnitus struck back in 1987 and I was told by the ENT to go home and learn to live with it.  He gave me no other suggestions nor information.  I couldn’t sleep and I was a zombie during for days at school.  Every night I laid awake hating the sudden invasion and wished I could just die.  Only with much determination did I make it through that time period and was able to push tinnitus to the side.

I didn’t think too much about my tinnitus for many years, it was there but in the background only.  Then working as a hard of hearing assistant, I was asked to edit a tinnitus presentation into a class.  I spent weeks organizing the information and researching tinnitus on the internet.  I hadn’t heard my tinnitus so well in years! I was so happy when I finished the project.

Once or twice a year I teach the class and it always throws me back to my early days when I suffered from it as I listen to others tell their story.  At least there’s more information available today thanks to the internet than what I had in 1987.  It’s wonderful of the state of Utah to offer this class to help others.  Together we talk about it and I always hope I helped them at least a little bit.  Today I thought I’d write up a list of things to help other people as well.


Tinnitus is most vicious at night because the world is quieter.  All we want is to sleep and it seems impossible with all that racket in our head.  We lay there awake..thinking about it, hating it, crying or pissed off.  It’s at the forefront of our thinking and it’s evil.  

Here’s some things you can do to help you sleep.  The trick is to take your mind away from your tinnitus and place it elsewhere.  If you find yourself focussing on your tinnitus, take the focus away to something else.

  1. Soft noise.  Turn on the fan. Get a fish tank that bubbles. Use soft music or the TV.  There’s small water features you can buy to keep on the nightstand. Get some environmental sounds to listen too. (I use an app on my phone called SleepStream 2 and I love it.  There is a fee.)
  2. Try something visual.  I know some people don’t like lights at night so experiment.  Try fiberoptic lights or something like a projection of the night sky on the ceiling.
  3. Some people claim aromatherapy distracts them from their tinnitus at night.  Find a soothing scent.
  4. Create a regular bed time habit and make it a comfortable routine.  Turn off the TV, read a bit, have a cup of tea.  Create a peaceful atmoshphere with light background noise. 
  5. Find your happy place.  Start creating a visual in your mind of your perfect place. Counting your blessings also works, not matter how small it starts, the list will get bigger.


During the day it’s a little easier to ignore tinnitus but in quiet places or at idle times it can sneak up on you.  Again, every time you catch yourself thinking about your tinnitus take it away to something else.

  1. Mindfulness works.  If you’re dusting furniture and the ringing is driving you nuts, focus instead on the dusting-the motion your hand makes, the smell of the furniture polish, the trails you make in the dust as you go.  
  2. Keep light noise in the background.  Don’t make it too loud because sometimes loud noise can make tinnitus work.  Use the radio, some music, the TV.
  3. Some people started a new hobby when tinnitus struck.  I remember a story of guy who took up running to ‘run away’ from his tinnitus.  He used it to work through his tinnitus and enjoyed it so much he became a marathon runner.  Have you always wanted to paint?  Take and art class.  Take a dance class or start attending a climbing gym.  Having something new to do will give you a new focus.
  4. Many hearing aids have a tinnitus program option.  Whenit’s quiet at the office, I’ll turn on my tinnitus program and I hear crashing waves in the background.  If someone comes in and starts talking to me, the waves fade away and I still hear environmental noise.
  5. Here’s your excuse to go get a message.  Tense shoulders leads to a tense neck and even a tight scalp.  It could be making your tinnitus worse.  It won’t take away your tinnitus but maybe you’ll feel more relaxed and able to deal with the tinnitus better.

These are practical tips.  I don’t know much about alternative therapies so I won’t get into that.  The American Tinnits Association (ATA) which talks about those therapies and you can explore them on your own.  The ATA has tons of good information on tinnitus and you can read the latest updates on studies too.

Some people have tinnitus triggers and spikes.  Mine is a lack of sleep and it will make my tinnitus scream!  I warn people it will be a bad hearing day on those days.  For other people it’s loud noises, over the counter meds, diet (caffeine, sugar, alcohol, salt) or smoking.  None of those things affect me but lack of sleep will.  It’s different for everyone.  

If you’re feeling suicidal because of tinnitus, please reach out for help.  I know someone who was and sought help and successfully habituated tinnitus.  You can move beyond it!

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Gestures

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I teach a speechreading class at different senior centers through my work with the state. Every time I teach the class I learn a thing or two. It might be lip shapes of certain letters clicking in my brain at long last. It might be something I need to work on such as saying ‘zero’ instead of ‘oh’ when working with numbers. In life outside the classroom it was rephrasing which I brought back to my students. This last fall I learned how much gestures aid communication.

It’s a lesson in our book which I helped edit a year or so ago. The lesson is in there but I hadn’t given it credit until I watched my seniors struggle to learn lipreading. The more we relax, the easier lipreading gets but my students weren’t able to relax. They stared intently, not able to pick up the words in ‘lip speak’ (no voice). With the younger crowd I taught everyone the ASL alphabet and we used finger spelling for hints but my seniors weren’t picking up that up either. I sensed frustration so I encouraged them to use gestures if they saw the puzzled looks.

At first they felt awkward, but after a few lessons of using gestures they became more comfortable with the idea. Then they started picking up the words faster, so fast I was amazed. Soon it became common practice with us and it introduced laughter. What happens when a speechreading class becomes fun? They relax. We still focus on the lips but gestures are now a habit for us.

My husband didn’t want to learn sign so much, although he learned the ASL alphabet to help me with words and names I was stuck on which was valuable to our communication. (Thank you Ken!) All along Ken also used gestures when I was stuck. I laugh at his creativity but it works! And if I laugh the strain on my end disappears. I hadn’t given his gestures proper credit before teaching my class last fall and now I value it. I encourage it in all my classes and will be including it in my presentations too.

This takes me back to my first HLAA convention in Rhode Island. I went to lunch with several women. One used sign as she talked. Another used a PockeTalker pointing a microphone at whoever was talking without fear. Another lady had a hearing dog beside her. Facial expressions seemed more animated and I remember a few gestures thrown in too. At the end of the lunch, one of them told me something like, “Use everything, why not? If it helps, do it.” That lunch in 2012 left a big impression on me. (Thanks Nini!)

Communication is easier with gestures.  Let’s all get animated in our conversations and encourage those in our life to use them as well. Perhaps if we use them ourselves others might too. People pick that kind of thing up uncousciously, plus it’s fun! Gestures are helpful in communicating with the hard of hearing, it deserves more credit.

The Steps to Coping with Hearing Loss

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Part of my job is going to senior centers; to teach a speechreading class, have a table at their health fair or give presentations. Recently a senior center requested a presentation on coping strategies for hearing loss, mostly because the program director herself has a hearing loss and isn’t sure what to do. The idea rolled around in my head for about a week before I could put it to paper. There are the obvious coping strategies;

  1. Face me when you talk. Mostly I tell people “I lipread” these days which usually works great for me.
  2. Get my attention before talking. If this would be done each time, there would be a lot less repeats. Just because I’m in the same room doesn’t mean I’m going to hear you because I need to see your face first to hear.
  3. If after one repeat I still don’t understand then rephrase or add gestures. Gestures can be a huge help.
  4. No talking from other rooms. If someone wants to start a conversation that person, hard of hearing or not, will go to the other person to talk.

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Those four little rules will benefit a hard of hearing person a great deal. I added a couple more that aren’t as obvious.

  1. Think ahead. What will you need to hear better and enjoy in certain socializing situations? Will it be taking a friend who can help you hear? Or taking another hard of hearing person who understands? Will you need an FM system and get permission to hook it up to the microphone that will be used? Show up early to get the front seat? Taking your living room loop to the Super Bowl party? Captions? etc.
  2. Take a class geared toward hearing loss. Find a lipreading class or an ASL class. Attend any workshop you can that has to do with hearing loss. HLAA has free webinars monthly, check them out too.
  3. Join a support group. The SayWhatClub is a great resource for anyone who has access online. They have email lists and Facebook groups, choose the method you like best and join. Why? They are instant support for the bad times, good for ranting about the hearing world but mostly for the friendship and role models you’ll find. It’s finding your tribe of people. Then see if there’s a local HLAA or ALDA chapter near you because being with others who have hearing loss makes you feel good. Go to as many hearing loss conventions as you can for more friendships!

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I am including in my presentation 3 more items that aren’t commonly considered coping strategies as far as I know but I believe they are the basis for everything I listed above.

Get out of the closet, quit hiding your hearing loss. Get it out in the open and start telling people you have a hearing loss. Before we come out of the closet we use bad coping strategies; faking it, bluffing, talking so we don’t have to hear and the deaf nod. This may cause hearing people to think, “She’s losing it. That answer is off the wall.” And, “She’s kind of slow, she doesn’t talk much.” Then there’s the snobby conclusion, “She’s really stuck up. She didn’t stop to talk to me when I called out to her.” A good coping strategy is being upfront about hearing loss and your needs. It’s freeing to let it all out and later on you’ll realize hiding it was a lot more work. Wouldn’t you rather people know it was your broken ears, not a damaged brain? It’s hearing loss, she didn’t hear me instead of being stuck up and unfriendly. Doing this will open a new line of communication with others.

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Educate yourself about hearing loss. Without knowing exactly how your hearing loss works, you can’t describe it to others and they won’t understand our needs as well. Do you have a regular ski slope hearing loss? A reverse slope? A cookie bite? Conductive? Mixed? What exactly does having that hearing loss mean to you when it comes to speech, has an audiologist ever told you? Do you need volume? Less volume, more clarity? Do you hear a man’s voices better or a woman’s? The more you know about your hearing loss the more you can address your needs specifically.

If you wear hearing aids or CI’s, how much do you know about them? What are their benefits and limitations? Do you know all the programs they offer? (Background noise, tinnitus relief, telecoil, Bluetooth, etc.) Find books on hearing loss and read all you can.

After that, learn all you can about assistive listening devices. Browse websites, order free catalogs and ask people who attend hearing loss support groups (they are the best resource). Ask for assistive listening devices in theaters, at the movies, at sporting events at church and anywhere you go. Do they have volume control headphones or captioning devices? Which ones benefit you most? Ask because while you’re asking you’re also educating other people about hearing loss.

Stick up for yourself. Stop worrying about burdening other people. Communication is a two way street. It’s up to us to advocate for ourselves and the people in our lives should be able to meet us halfway. My part is paying attention. If I’m stuck on a word and I’m doing my best there should never, ever be an eye roll, a “never mind” or “I SAID…” If you’ve done your job learning about hearing loss, then you’re armed with knowledge, let them have it! I recommend trying to be nice about it. There’s assertive and then there’s aggressive. No one likes being yelled at. Remember communication habits are hard to break (start now!) so have patience but be consistent. There are times when getting mad makes the point but use is sparingly. I made a good impression on my family after getting a “never mind” once too often by hitting the roof. They never said it again. I’m not proud when I lose it, even when it works.

stick-up-for-yourselfThese are steps to success with hearing loss.  There will still be pitfalls, tears and possible tantrums but there will be less of them.  Plus these steps help end the isolation many feel that comes with hearing loss.

Accents & Hearing Loss

My husband and I took a belated honeymoon/anniversary trip to Costa Rica a few weeks ago.  I decided to go minimal knowing we’d be moving to a different part of the country every few days.  I left my usual purse at home, using a super small, flat purse to carry only a few essentials.  Knowing it was going to rain every day and be super humid, I decided to leave my hearing aids at home.

I know some of you out there are gasping at the thought of leaving hearing aids behind.  Hearing aids are just too expensive to lose and I didn’t want to chance it.  I’m fairly comfortable not wearing hearing aids here at home but I’ll admit, I was a little worried about how I’d hear English with accents there.  Lucky for me I was going with a hearing person. Still I didn’t want to lean on him too much, I was sure I’d find ways to communicate as needed.

Our first driver spoke very little English.  I was super tired after flying all night in a tin can, packed tightly together.  Airline seats don’t go back far enough to sleep without pecking corn (my head falling forward again and again as I tried to sleep).  When I’m that tired, I can’t hear at home either so I only knew our driver was talking but understood very little of what he said.  Ken said he couldn’t really understand him either.  I fell asleep in the van which was more comfortable than the plane believe it or not.  We stopped for a picture at one point and when I had a hard time understanding him, he resorted to gesturing.  Perfect!  Gesturing is universal.

We went to a restaurant and the menu was in both Spanish and English. I thought I’d try the Spanish words since I was in their country.  “I’ll get the hamburguesa atun.”  He looked down at me and said, “You want the tuna sandwich.”  I almost laughed out loud.  I think he meant “Don’t massacre my language.”  I didn’t try ordering in Spanish again sticking to English.

We stayed in three different towns in different parts of the country.  We stayed in Manuel Antonio the first few nights which mostly resting up from our plane ride over.  Then went to la Fortuna the next couple of nights where three activities were planned; the hot springs at Tabacon, a trip to the Arenal volcano and the Fortuna waterfall.  We had an English-speaking guide for the volcano and waterfall, he was very good about facing me.  He was a biology student so he and Ken got along well, he even convinced Ken to eat a few termites…no I didn’t even try.  Ken said it was ‘woodsy flavored.’

Over the course of the trip I realized the same rules apply abroad as they do in the states.

  1. If having a hard time, I told them I couldn’t hear well.
  2. I told them I use lipreading.
  3. If I could relax, I could hear/lipread them, especially after spending more time with them.

My favorite hard of hearing moment  of the trip was while we were Tamarindo and went out on a catamaran for snorkeling.  I’m not one to jump in the ocean so I stayed on the boat while the others splashed around.  I was happy with mojitos, the view, the sun at least and getting to know some of the crew who were super accommodating. I was sitting at the back of the boat relaxing and one of crew members sat down next to me.  He said, “I know you don’t hear well and that you are learning my lips…”

And I thought perfect, yes!  I’m always learning people’s lips.  I’m learning their lips, the words they use, their facial expressions and their accents.  I was certainly learning his lips.  To continue…

“…and you’re learning my lips but I don’t know how you understand me so well.”

Well… I grew up near the Mexican border in California so maybe Spanish accents are a little easier than I thought they would be?  That’s what I told him but after more thinking maybe it’s a combination of things.  Maybe I spent enough time with him?  Or was it that he made sure he faced me?  Maybe some people are easier to lip read accent or no accent no matter what.

I had a grand time and I would not hesitate traveling in other countries.  Where there’s a will, there’s a way.  Travel forth my hearing loss friends!

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My friend on the boat.

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Me on the boat.

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A restaurant in Manuel Antonio.  The tourists loved the monkeys and the locals thought of them as pests.

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Hot spring bliss.

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Fortuna waterfall

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Melwin was another person who was easy for me to understand.

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In the jungle leading up to the Arenal volcano. Andrey was easy to understand as well.

 

Working Toward Living a Spontaneous Life

 

Volunteering for hearing loss causes, attending various hard of hearing support groups and meetings plus going to conventions put me in touch with some awesome people. I learn things too!   At the SayWhatClub convention in Boise this last August I had the privilege of listening to their keynote speaker (with the help of CART and the loop) Richard Pimentel.  How fortunate I am to get around like this and then be able to write about it, sharing it with you all.  I hope this encourages you to be a part of your hearing loss community too.  

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Richard Pimentel was the keynote speaker for the 2016 SWC Boise, ID Convention. The convention crew was honored to have him speak and attendees were excited, especially after watching the movie Music Within depicting his life and his work toward the American’s with Disabilities Act (ADA). So much of what he said I didn’t want to paraphrase so where the text appears in blue, it’s directly quoted from his speech.

A short bio of Richard’s life can be found on the website where he works:

“Richard Pimentel was pronounced dead at birth in the delivery room. In a miraculous turn of events, he lived. His mother, who had experienced three miscarriages before his birth, left him in an orphanage, unable to come to terms with his existence. After his father’s death, he was raised by his impoverished grandmother and deemed “retarded” by a school guidance counselor. He never spoke a word until age six.
After his mother abandoned him again for a new boyfriend, Richard was left homeless and roamed from friend’s homes to his father’s old workplace, a strip bar. He lived and slept in the dressing room. During these hard times, he managed to win two national high school speech championships and was offered a college scholarship by College Bowl founder, Dr. Ben Padrow. Richard arrived on campus only to hear Dr. Padrow tell him to come back when he had “something to say.”
Richard followed Dr. Padrow’s advice and quit school. Soon after he was drafted to Vietnam, where he survived a volunteer suicide mission and became an acknowledged war hero. During his brief celebration, a stray bomb exploded in his bunker and ravaged his hearing. Not only did Richard lose his hearing, he developed tinnitus, a constant ringing in the ears. The government dismissed his dreams of college and public speaking, insisting his fate was one of insanity and rage due to his condition.”
Richard started his speech with humor, talking about his past and growing up in Portland, Oregon…. Being poor enough to be on the “relief” program (before food stamps) and getting the worst peanut butter ever which came in a can and had to be shaken with a paint shaker to be mixed. There was no money for a college education so he took up a government program called Vietnam, were a college education could be obtained after government service.
Several times we laughed as he talked about his service years leading up to a tense moment when his small unit was surrounded by the enemy on a suicide mission. Decisions had to made and they made it back to camp w

here they were holding funeral services for the 5 men who were expected to die.
The men were awarded a night in the beer bunker for their survival. Ten hours later a rocket was exploded on top of the beer bunker while they were still in there and the bunker imploded. “What did the implosion do? Well, the worst part of the bunker, where all the air came together, air at high velocity in a confined space, it literally blew the eyes out of the person who was there. All the rest of us got traumatic brain injuries. Even death.” It caused him to lose 70% of his hearing, losing the high frequencies, a classic ski slope loss.
After the explosion, he had to learn to walk, talk and even feed himself again-which he said he mastered almost immediately. Once he was getting around again, he wanted to go to college and the government refused.
You know what the rehab person told me? He said: Well, I can’t spend government money on sending you to college.

I said, why not?

He said, because you are deaf!

I said, what? Those counselors have no sense of humor. I said, I’m not deaf, you moron. You are talking to me.

He said, no, no, you are not totally deaf. If you were totally deaf, you’d be fine. I’d just send you to Gallaudet and make a good deaf person out of you. But you lost over half your hearing. You don’t have any hearing in the upper register. You got good hearing in the lower register. So you know what you can’t hear?

I said, what can’t I hear?

Well, you can’t hear the beginning and ends of all consonants. They are all going to sound the same to you. Your T’s and your Z’s and your V’s, they will all sound the same. He said, you know what you hear?

I said, what?

Your vowels. You hear your vowels: A, E, I, O, ooh. But not your Y’s, not even sometimes.

I said, what do I do? Do I learn Sign Language?

He said, you don’t want to learn Sign Language. The only people who do Sign Language are the deaf, and they don’t want to talk to you!

I said, well, what do I do?

Well, if you don’t hear consonants but you hear vowels, you only have two choices in your life  either learn to read lips or you move to Hawaii!”
The counselor went to explain how tinnitus would keep him from learning as well and possibly drive him crazy. His hearing loss and tinnitus would make him angry, violent and foul mouthed.
Moving on, the counselor asked him what he wanted to do in life and Richard said he wanted to be a public speaker. The counselor told him it wasn’t possible and pulled out a big book of disabilities. The book listed careers people could do with their disability, under deaf was listed “shoemaker”. The counselor moved on to traumatic brain injury and pointed the list of options out to Richard and asked do you see “professional speaker” listed? No? Then you can’t do it.
Richard decided to prove him wrong. He learned to read lips and went to college anyway. There he met Art Honeyman who had severe cerebral palsy. Most people couldn’t understand Art but Richard understood him perfectly. It turned out Arts speech lined up with Richard’s audiogram perfectly. Art had high IQ and Richard often translated for him. Then Richard wouldn’t be able to understand the person talking to them so Art would translate for him (Art could hear). “We were the strangest pair you ever saw in your life!”
Art was in wheelchair and the majority of public places were inaccessible in 1970. As an example, the college dorms and bathrooms were only accessible if Richard or someone else carried Art over their shoulder. They became good friends.
On his birthday in 1972, Art called him at 3 am to go out and celebrate with pancakes. He needed Richard to help him dress and carry him and his wheelchair down 3 flights of stairs, then push him 8 blocks to the restaurant where he had to pull him more steps to get inside. Richard figured why not and did it.
The waitress had come up and never seen anyone like Art before. She said the cruelest thing I ever heard in my life, cruelest thing I have ever heard in my life. She went to Art and she said, you are the ugliest thing I have ever seen in my life. Do you expect me to bring you food? And I don’t know how you are going to eat it, like some pig in a trough. You are going to make us all sick. So I won’t serve you. Get out. She said, I thought people like you are supposed to die at birth.
I looked at my friend, Art. He’s my best friend. What’s he going to do? How’s he going to react? Is this going to ruin his life? Remember, he’s a genius. But he’s better than a genius  he’s an evil genius! And Art turned to me, and I will tell you exactly what he said. He looked at me and said, Richard, why is she talking to you that way?! You don’t look any worse than you normally look!
Lord knows, I wanted to say it to him before, but he was my friend. I said, she’s not talking to me, she’s talking to you!

He said, there’s only two of us; how can you be sure?

I said, I think she’s trying to take me home and trying to get rid of you.

So we got into this big argument about who she wanted to date, and that made her really mad. You can either leave, she said, or I can call the police.

And I said, call ’em.

And they came. And the police said, you can either leave or you can go to jail. And Art said the words that changed my life: He said, I want to go to jail. Then he said, and Richard wants to go to jail too.

I said, no! I don’t want to go to jail. I want to get a job with a big American company.
I could have left. Art wouldn’t have blamed me. I could have just got up and said, I am not going to go, and they would have taken Art to jail. But a few things occurred to me.

First intellectual reason was, if they didn’t want me to commit civil disobedience, why then did they require me to read Thoreau?

The second intellectual reason: I didn’t go to Vietnam to protect people I don’t know to come back to find the people I care about have no rights.

The third one wasn’t intellectual, okay? How the hell are they going to fingerprint Art? This I got to see. This will be worth going to jail for.
They were jailed and appeared before the judge who found them guilty under the “Ugly Law.” Portland Oregon had an Ugly Law. Richard realized he was living in a time of disability apartheid, this seven years after the Civil Rights were enacted. Art and Richard continued going to places there weren’t welcomed and were arrested again and again.
Why? Because we believed since they were enforcing an absolutely unjust and unfair law, that if we made them do it over and over again, eventually they would have to change the law out of embarrassment. I started a mission in 1972 that ended 20 years later with the passage and eventual enforcement of the Americans with Disabilities Act. It was a tough road.
What I want to share with you is this. You know you are going to look at a lot of the ADA stuff, and you are going to see — oh, you will see Justin Dart and all of these people with wheelchairs, you are going to see people climbing up the steps of the Capitol. You are going to see such dramatic things, and you know what you might believe? You might believe by looking at that the only people who were involved in this were folks in wheelchairs, and the only issue they cared about was bathrooms, and stairs, and doors and ramps. But I want you to know, there were a lot of other people involved in the movement. People who were deaf and had been deaf for generations. And then they had people like me, the recently hard of hearing. I remember when I first started, trying to become a leader in the disability community, I was criticized for not being disabled enough. I was criticized for not being deaf enough. I was criticized for not doing Sign Language.
Richard went to share his experiences in helping people get accommodations, Deaf and otherwise. While standing up for a Deaf employee who’s supervisor wouldn’t allow her an interpreter (she read lips too well) during a disability presentation Richard was giving at a big company earned him the respect of Deaf culture.
When the disability community first started with ADA, it was a very physical disability community. Sensory was not a big deal, except for blind. They didn’t think that retardation should be included. They didn’t think that mental illness should be included, or that learning disabilities should be included. And it was the deaf community that said, we need inclusiveness.

I want you to know right up there with all the folks getting all the photography going up the steps, there were a number of folks who were Deaf  and folks like me, only hearingimpaired  who helped put the ADA together. You folks are very much a part of that.

The deaf community, along with all the other communities in the disability field, helped put the rights together. And we didn’t do this together so we would have lawsuits. You know what we did ADA for? The simplest thing in the world. We did it so that people with disabilities could have a spontaneous life. You don’t have to call ahead to know that you can get somewhere, or that someone will be able to talk to you, or that you will have another way to communicate available to you. We want what so many people without disabilities take for granted the ability to have a spontaneous life. This really is all it comes down to. And we ended up in 1990 passing that.

Look for more of Richard’s work in a program he’s working on for parents of children with disabilities. He wants them to know a disability does not define anyone and that they too can be successful in today‘s world. He will start in the Boise area, where he lives, and wants to take it nationwide.

Who you are is important. Every decision that we make about anyone should not be based on what they have but who they are. Disability is not a 4 letter word. Recognizing a disability is important so everyone knows how to advocate for themselves. Tell people in a kind, positive and creative way what you need.

His final words to us was for children with disabilities but I believe it applies to us all:

The shortest distance between where a young person with a disability is and where they want to be is a road that is illuminated by their own dreams, not by the dreams that we have for them, no matter how much we know, no matter how much we care, and no matter how much we love them. Let us enable them to find their own dreams, their own music, and their own definition of success. That’s the best advice that I could give anyone who cares about someone with a disability. We didn’t work all of these years  and I’m old now  to help ourselves. We worked to help this new generation of young people with disabilities to live a spontaneous life.

He received a standing ovation from our attendees.

Auditory Fatigue

All three hearing loss organizations in the US have their good points. I love my local HLAA chapter for its face to face meetings. A few weeks ago they had Susan Naidu, an audiologist at the University of Utah talk about auditory fatigue, also called listener fatigue and cognitive energy fatigue. She works with patients in the clinic, trains graduate students to become audiologists and her favorite thing to do is aural rehabilitation therapy. She was happy to talk about auditory fatigue because “it’s a very real phenomenon, it’s a real condition but it’s not discussed much and not researched enough.” It isn’t clinically recognized but many professionals are familiar with it.

tired again

Auditory fatigue doesn’t mean people are dumb because they can’t listen, it’s the “energy it takes to fulfill the complexity of listening because listening requires more to go on in your brain in order to comprehend what you’re listening to.” Ian Noon wrote about this in his piece on the Limping Chicken out of the United Kingdom only he called it concentration fatigue. Noon says: “I went to a great conference today. It was riveting and I was hooked on pretty much every word. And then I got home and collapsed on the sofa. I’m not just tired, I’m shattered. I’ve had to turn my ears off to rest in silence and my eyes are burning. I’ve also had about 3 cups of tea just to write this paragraph.”

Susan introduced us to Kathleen Fuller’s work on hearing loss and cognitive energy. Kathleen asks: “How can audiologists better understand and find ways to counteract the factors underlying why listeners may decide to quit participating in activities because it takes too much effort to listen? How can audiologists help listeners to strategically deploy their available cognitive capacity in situations where it is hard to listen? How can audiologists prevent listeners from avoiding situations and withdrawing from social participation because it is too hard to listen?… It’s said we hear with our ears and listen with our brain now we add when and how much effort we expend during listening in everyday life depends on our motivation to achieve goals and attain rewards of personal and/or social value.”

Listening takes effort. It’s not only being able to hear but being able to pull all the components together to communicate properly. It’s being able to understand language, generating an appropriate response and being able to keep it going back and forth to make a conversation. Usually people aren’t just listening either, they are multitasking; washing the dishes, walking, watching TV, etc.

For those with hearing loss it takes even more effort. Not only are they taking in the above but they are trying to decode the message. Add in being visually aware to compensate such as speechreading and body language. The mind races to fill in blank spots in words and conversations which involves guess work. The mental process is “I’m not hearing well enough. I have to do something and physically push the brain to listen better.” After an hour (or less) these people are really tired and experience discomfort, pain and numbness.

 

What makes listening even more difficult? Noise, it’s the number one complaint for those coming into Susan’s clinic. Trying to filter and ignore noise makes listening harder for hearing people and difficult for the hard of hearing. Even with modern technology in hearing aids such as directional microphones and noise reduction programs noise remains a problem. Restaurants are an example, bars and traffic. (Hearing in cars has never been easy!)

What other things become hard with this much cognitive energy being spent? Remembering things get harder because with so much going on in the mind already, it’s hard to find a place to stash the information. People may have a hard time remembering names because there’s more focus to understand what’s being said. While in a meeting they can be so intent on understanding the words as they are being said that half the meeting information is forgotten.

Because of the intense concentration, hard of hearing employees end up taking more days off. The mental stress affects their bodies causing illness among some. Or to balance out, they stay home evenings and weekends to recuperate, avoiding social activity. For those who don’t work, many tend to withdraw because it’s too much work going to that party, the play or lecture. It’s easier to stay home and watch TV with captions. It’s not worth it in the end, the struggle is too much.

tired

Mohan Matthen is studying why some hard of hearing people are more successful at socializing than others. He thinks it might be a pleasure factor. When audiologists diagnose hearing loss and fit people with hearing aids they tend to talk about adverse conditions. What if they talked about positive things instead? If a person can exhibit more pleasure in the role of listening they might be more relaxed and less stressed out. Once it becomes pleasurable their listening effort seems to be reduced. No matter how hard it seems, seek listening enjoyment. Make it fun and shoot for positive because the reward will be “I will understand.”

So what helps combat this fatigue?

Advocating helps a great deal. What do you need to make this meeting better? CART (live captioning)? Sitting closer to the presenter? Assistive listening devices? One speaker at a time? Don’t talk while multitasking? There’s a lot to be said for planning ahead as well. Think about the environment, talk to the event coordinators, find out if the venue has assistive listening devices such as the CaptiView at theaters or live captioned performances. If you’re going to a lecture/workshop/convention, talk to those in charge well in advance to see what might be set. Some people report learning speechreading has helped lighten their fatigue. Visiting with people a few at time instead of large groups. Limit interruptions, have a quiet room to talk to family members at large gatherings. Ask for background noises (music or TV) to be turned down or off. Go outside to eat because break rooms usually have lousy acoustics. Take hearing breaks and read instead of watching TV. Arrange for hand signals when conversation needs to be slowed down or when wanting someone to talk louder. Find out what works for you and advocate for yourself. It’s okay to experiment with it all.

The presenter validated what most of feel almost daily, I’m so glad I attended.  I don’t shy away from social situations often, I even attend noisy ones without much thought although occasionally I refuse to go because I’m already tired. If I’m that tired I’ve learned from experience I won’t have the energy needed to make the best of the situation staying home instead. Knowing when not to venture out has saved me a few meltdowns.

I also know when to get CART, when ALDs will work, or not, and it’s even helped to know I’ll fail from time to time. I now analyze my bad times to find ways to make it better next time. 

Advocating for myself has made a tremendous difference in my social pleasure. I tell people up front I lipread, they need to face me or get my attention before talking. Most people are good and will comply and some very interesting conversations have followed.

More links on auditory fatigue.

Studies done on prolonged exposure to audio stimulus (for those who want to go deeper). This phenomenon occurs after an extended period of time listening to speech and happens to hearing people as well. Hearing people have more problems than expected which might be related to an auditory processing disorder. Susan said those with hearing loss all have auditory processing disorders.

Richard Gurgel is studying the relationship of hearing loss and dementia. Are individuals with diagnosed mild dementia experiencing decline in auditory processing? Older individuals who have hearing loss but didn’t have hearing aids showed improvements once aided, not just in quality of life but in skills. People were thinking they had dementia when they didn’t.

Starkey on listening fatigue.

Amplification study. Amplification has limited improvement for those with a steep slope high frequency hearing loss.

Susan recommends the LACE (Listening And Communication Enhancement) Program, it improves listening skills.

More publications by Mohan Matthen on hearing loss and displeasure.

The Ditto

I got the Ditto about a month ago, curious to try things out that might help the hard of hearing.

ditto

picture from pc world

The Ditto is an alerting devices for phone calls (I rarely do the phone), incoming texts, email and more.  It has a good, strong vibrate for such a little thing and it has several options of vibrating patterns.  I had a few people ask me why I wanted to try this because our phones alert us in several ways.  So here’s my deal…

My phone is always silenced.  Any noise that I can hear from any distance is going to be LOUD and obnoxious.  When it’s that loud, it scares me half to death when it goes off.  I have a flash alert set instead which works when I’m near the phone and remember to place it face down so I can see the flash.  If I’m out and about, it’s in my purse or in a pocket unless I’m expecting a text then I’ll carry it in my hand, hopefully face down to see the flash.  This makes me pretty attached to my phone and my hands full at times.  It might be nice having the Ditto but I didn’t expect to like it much because it is Bluetooth and drains the battery on my phone.

 

I tried it out driving to the SayWhatClub convention in Boise at the beginning of August.  I kept it plugged into the car charger.  It was nice to know when texts were coming in and I knew to look when I stopped.  Then I wore it the next day because I kind of liked not having my phone in my hands all the time.  I tried it in the pool (it’s water proof) at the hotel.  It seemed to lose the bluetooth connection and the ‘tether’ alert would go off.  (Tether is an alert designed to tell you when you are too far away from your phone or forgot it somewhere.)  That night I went out on the Boise Brew Cruise I kept it on (charging my phone before I left).   The cruise took us to 3 Boise brew pubs and my phone and the Ditto kept up.

So I started wearing the Ditto more because at the convention not only do I have my family/friends texting as normal but we attendees also start texting each other for information on activities and such.  I’m also charging my phone a lot more but I don’t mind because it’s useful for me.

At home I continued to wear it because I liked not carrying my phone around with me.  I wore it at work so I didn’t get behind on texts, mostly what’s going on at home and things can happen fast at home.  Yesterday I forgot to take it to work with me and I missed it.  I’ll have to start tucking it into a purse pocket.

I don’t use it all the time because sometimes I like having a break from my phone or maybe I’m not doing anything more than watching TV so I can check my phone.  I’m glad I have the device though, it’s frees my hands up and I can forget about my phone for a while confident I’ll get the alert.

The only time the vibrate freaked me out is when I was in the backyard with the bees.  My husband has a hive of bees and bees can freak me out.  The bees were thirsty, zooming back and forth in the yard looking for water.  I was trying to get some toys out of the shed for my grandsons while keeping my cool.  My tether alert went off and I did this freaky dance in the yard slapping at my collar-bone while turning a circle.  It took me a few seconds to figure it was the Ditto and gather my wits again.  It probably looked funny but the 5 yr old and 1 yr old didn’t catch the humor.  They were just looking at me crazy like wondering what I was going to do next.

* Texting is my main mode of communication.  I think in an average month I send and receive around 2,000 texts.  My record is around 4,000 and that was about 4 years ago.