Hearing Loss: Come introduce yourself and connect with others

Welcome to the Hearing Loss group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with hearing loss, and friends and family supporters. Whether you were born deaf or hard of hearing, experienced hearing loss after birth or with aging, it helps to connect with others. Together we can learn from each other, support one another and share stories about living with hearing loss, coping with challenges and celebrating milestones.

Let’s chat. Why not start by introducing yourself? What is your hearing loss experience? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Hearing Loss Support Group.

@bigmqama

Hi I have A Question. I am using pocket talker two because the rejmote for my ha is broken. It works wel well but I still miss words at Times. My sister gets up Set And wll not repeat.any ideas how we can communicate better.. We need to build a relationship. Not a reply

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I agree that a hearing aid works better than a Pocketalker but even with my hearing aids, I miss words. As Julie mentioned, moving the microphone as close as possible to the persons mouth will help. We can also ask people to paraphrase instead of just asking them to repeat. For example, if the person asks "Do your parents go to church on Sunday?", perhaps they can say "Does your mom and dad attend church on Sunday?" It's sometimes not easy to think of other words but it does keep us thinking. In case you do not know, newer hearing aids do not need a remote control if you have a smart phone. The hearing aid manufacturers have apps that control the aids. Remotes are still available for those that do not have smart phones. A smart phone has other apps, such as the ability to transcribe speech to text, that can help with understanding speech also.
Tony in Michigan

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@julieo4

I hope you can get the remote repaired. Was that a remote control or a remote microphone? The Pocket Talker should help, however, it helps best if the mike can be as close to the speaker's mouth as possible. Not always easy to do. If you sister is open to learning, try this: Make a list of ten 3 or 4 syllable words like motorcycle, telephone, educate, etc. Then eliminate all the consonants from the words and have your sister tell you what the words are. Most hearing losses are high frequency losses, consonants define words, and most are high frequency sounds. Vowels give words power. We hear most of those but miss the clues to the word meaning. Consequently, we are always trying to keep up. While our minds are trying to figure out one sentence, the speaker is on another one, or even another topic. This is what causes auditory fatigue. If you give them the word with only the consonants they will figure it our fast. Here's one: _o_o__y_ _e vs m_t_rc_cl_ or an easier one like: _u_ _ _e instead of p_rpl_

In presentations, I sometimes use the Gettysburg Address. I have someone read the first paragraph while a timer keeps track of how many seconds it takes the person to read it. Then try the second paragraph that has a few missing consonants. The time will be longer because they have to figure out what is missing. Then try a third paragraph with more consonants missing. Even with a familiar passage it will take considerably more time. That often helps the hearing family member understand what is happening.

Our hearing loss is frustrating to others too. It does help if they understand what's happening.

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Hi Julie my remote adjusts volume. And gets rid of backround noise..

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@bigmqama

Hi Julie my remote adjusts volume. And gets rid of backround noise..

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It sounds as if you depend a lot of that remote. Can you get it repaired or replaced? Might your provider know someone who has one that s/he no longer uses? It's a shame not to recycle these things for re use. Same for hearing aids.

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@joyces

Reply to Judyca7: Judy, please check out what I posted for the fellow who does NOT have Meniere's. It's in the string just above what you just posted 5 minutes ago. If you work on VRT (vestibular rehab therapy), you WILL have more stability in everything you do. It will also help you judge distances when using your hands, like picking up a pen or pencil or chopping veggies on a cutting board. Try it...you CAN be far more stable, remove your constant fear of falling.

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Thanks Joyces. I worked with a physical therapist for almost a year and did those exercises. They helped some but everytime my hearing worsens it I have to start over from square one. I was sick quite a lot last year, finally ended up having surgery and stopped doing the exercises. Now I think I will give it another try. Tried the one with the step last night and could not do it at all without holding on so I have to start back with the basics again. Thanks for your encouragement. Judy

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Reply to judyca7: Judy, you need to do VRT forever. That may sound harsh, but it's true...and it's truly worth the effort. You won't always have to do as much as you need to do to get stable again, but you need to do some VRT every day to maintain stability. Since my profession (designed of fishing publications) depends upon me being able to wade rivers and hike, scramble up and down steep slopes, etc., I've done VRT every day for nearly 40 years. Initially, I learned from the author of the first book published about Meniere's (Meniere's Disease: What You Need to Know), via e-mail...the author lived in Florida, and I live in Oregon, about as far as you can get if you exclude Alaska! At that time, there were hardly any VRT specialists. It was an entirely new concept. Because going bilateral brought on increased instability, I scheduled an appt. with a VRT specialist to actually learn "hands on." I only needed three appts. before she assigned me a long list of things to do and sent me off, already far, far more stable. Since starting enhance VRT, I've done some very difficult instream work for our state fisheries agency. It wasn't as easy (yet) as it used to be, but I was able to do everything assigned, and felt very good about myself as a result.

The simplest way to keep on top of VRT is to walk in your home without any lights on at bedtime. If you live in a city, there may be ambient light, but you will be forced to think about what your feet are feeling as you move about. Add to that by doing some exercises at least a few times every week. For me, the single most effective thing I'm doing seems to be walking with my eyes closed much of the quarter-mile distance to reach the mailbox on our gravel road. I really think about what my feet feel, and can feel when I begin to stray off the relatively smooth surface driven on by cars to the rougher edge where gravel is piled up. An even better place to walk with eyes closed is our very old driveway, the typical two narrow strips of some gravel with grass in the middle and on both sides. It's really easy to sense when I've left the sorta gravel surface. Serious, too, as the driveway crosses a fair-sized creek and the ruts I'm walking in are less than a foot from the end of the culvert. If I don't pay attention, some day I'll find myself in a couple of feet or more of water! Personally, I think the step up and down exercise is also very good. If I don't do it for several days, I find that I can't do it without touching or nearly touching at some point--i.e., I need to do it regularly to stay on top of where I am in space.

FWIW, everyone over about 55 or 60 should do some simple VRT. Every day. As we get older, our inner ears become less effective, so all of us need to work on keeping our balance well-tuned. I used to wonder if I'd do this or that when I was 80: now that time is less than two years away! Amazing how time flies!

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joyces@joyces I am wondering where you went to see a VRT therapist? If it was pretty long ago, I imagine there weren't many of them around. It's a bigtime education, to hear from you that you can never stop doing the exercises!!! Thanks for the major education!

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Reply to barbb about VRT: Almost 40 years ago, there were hardly any PTs who specialized in VRT. I was designing/editing/publishing/distributing the first book about Meniere's, so I learned VRT via e-mail from the author. After I went bilateral over a year ago and lost hearing and balance on my sorta "good" side and got the damned disease under control by finding a doc to prescribe hormones and lots of 'em, I scheduled an appt. with the Vestibular Clinic at Legacy Good Samaritan Hospital in Portland, OR (two hours northeast). Believe it or not, the best places for vestibular diagnosis and treatment start with Portland, OR! (Others are the House clinic in CA, Mayo, the balance clinic in Fort Wayne, IN, and I'm sure I'm missing a couple but those are the main places.) Decades ago, Portland had THE diagnostician for inner ear disease, Dr. F. Owen Black. He founded the Vestibular Clinic, designed some of the machines to help him figure out what was wrong with us, and worked with NASA testing astronauts before and after space flights. He spent extra time testing John Glenn, who was the oldest astronaut to fly. (I believe that's still a true fact.) Dr. Black was especially interested in how much longer it would take John Glenn to recover normal balance, due to his age and expectable loss of balance function. Because of Dr. Black, the Dizziness and Imbalance International Assn. is headquartered in Portland, although it's now known as the Vestibular Disorders Assn. or VEDA.

The VRT specialist I saw this past summer said she had never seen anyone who knew as much about how balance function works, nor who was so intent on getting better. She tested my reflexes and found that I've lost some sensation in my lower legs and feet, hence the ramped-up work on paying attention to what my feet can tell me. She had me buy a Dyne Disc, which has a pebbly surface, but I soon found that I got more done by walking the quarter mile each way every day, much of it with my eyes closed. (Sometimes, if there's something interesting in the mailbox, I look at it on the way back home. That's a form of cheating.)

Walking on a rough surface while thinking about it is a good way to connect with your feet. Walking in low light situations, esp. outside over uneven ground, is another way to learn to move without depending upon your eyes. (That's bad because you change your focal point every time you move your head. It leads to V&V or vertigo and vomiting.) Stepping down and back up from a low step, eyes open five times, then eyes closed five times, then same with opposite foot is a good way to learn how to balance without using your eyes. Another good thing to do is to put a long piece of 2x4 on the floor and walk along it, heel to toe. The VRT didn't teach me anything new (except the step exercise), but she did reinforce what I already knew. The only way to prevent falling is to practice proprioception, the information your feet and entire body provide as you move. Using night lights means that you rely on your eyes and will risk falling if you can't see. Proprioception means that you learn to move without using your eyes. It also helps with eye-hand coordination.

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@joyces

Reply to barbb about VRT: Almost 40 years ago, there were hardly any PTs who specialized in VRT. I was designing/editing/publishing/distributing the first book about Meniere's, so I learned VRT via e-mail from the author. After I went bilateral over a year ago and lost hearing and balance on my sorta "good" side and got the damned disease under control by finding a doc to prescribe hormones and lots of 'em, I scheduled an appt. with the Vestibular Clinic at Legacy Good Samaritan Hospital in Portland, OR (two hours northeast). Believe it or not, the best places for vestibular diagnosis and treatment start with Portland, OR! (Others are the House clinic in CA, Mayo, the balance clinic in Fort Wayne, IN, and I'm sure I'm missing a couple but those are the main places.) Decades ago, Portland had THE diagnostician for inner ear disease, Dr. F. Owen Black. He founded the Vestibular Clinic, designed some of the machines to help him figure out what was wrong with us, and worked with NASA testing astronauts before and after space flights. He spent extra time testing John Glenn, who was the oldest astronaut to fly. (I believe that's still a true fact.) Dr. Black was especially interested in how much longer it would take John Glenn to recover normal balance, due to his age and expectable loss of balance function. Because of Dr. Black, the Dizziness and Imbalance International Assn. is headquartered in Portland, although it's now known as the Vestibular Disorders Assn. or VEDA.

The VRT specialist I saw this past summer said she had never seen anyone who knew as much about how balance function works, nor who was so intent on getting better. She tested my reflexes and found that I've lost some sensation in my lower legs and feet, hence the ramped-up work on paying attention to what my feet can tell me. She had me buy a Dyne Disc, which has a pebbly surface, but I soon found that I got more done by walking the quarter mile each way every day, much of it with my eyes closed. (Sometimes, if there's something interesting in the mailbox, I look at it on the way back home. That's a form of cheating.)

Walking on a rough surface while thinking about it is a good way to connect with your feet. Walking in low light situations, esp. outside over uneven ground, is another way to learn to move without depending upon your eyes. (That's bad because you change your focal point every time you move your head. It leads to V&V or vertigo and vomiting.) Stepping down and back up from a low step, eyes open five times, then eyes closed five times, then same with opposite foot is a good way to learn how to balance without using your eyes. Another good thing to do is to put a long piece of 2x4 on the floor and walk along it, heel to toe. The VRT didn't teach me anything new (except the step exercise), but she did reinforce what I already knew. The only way to prevent falling is to practice proprioception, the information your feet and entire body provide as you move. Using night lights means that you rely on your eyes and will risk falling if you can't see. Proprioception means that you learn to move without using your eyes. It also helps with eye-hand coordination.

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@joyces Thank you Joyce for your reply. It's a real treat to get this history and so much more! One of the places for VRT you didn't mention is Rusk (NYC) where I have been. They were very helpful to me with my balance after a tumor was removed from my acoustic nerve, which, during surgery irritated my balance nerve and thus I had hardly any balance for a while. But since then I returned years later to shore up my not too great balance, and felt that the therapy accomplished little. (I would think it was VRT the 2nd time but don't know for sure.) At any rate, I was disappointed, feeling I saw no significant progress. Since then I have at different times done PT and had essentially the same feeling of disappointment despite the fact that many people said "do the exercises, it will help". Still, I could not see any sign of progress. And then on April 1st, walking in the park, I fell and fractured my arm. Since the fall my balance is bad enough that I almost always use a cane and am thinking about getting a walker (which no professional has suggested). And then....you come along with your gung ho message and make me pause! 🙂 I think to myself, is it really possible that exercises could significantly improve my balance?

I have taken note especially of the step exercise you mention. The steps available to me in my apt building are 7". Do you think that is low enough for me to practice? Courtesy of you I'll have to get serious about proprioception!

Thanks again for your rich supply of information!

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@barbb

@joyces Thank you Joyce for your reply. It's a real treat to get this history and so much more! One of the places for VRT you didn't mention is Rusk (NYC) where I have been. They were very helpful to me with my balance after a tumor was removed from my acoustic nerve, which, during surgery irritated my balance nerve and thus I had hardly any balance for a while. But since then I returned years later to shore up my not too great balance, and felt that the therapy accomplished little. (I would think it was VRT the 2nd time but don't know for sure.) At any rate, I was disappointed, feeling I saw no significant progress. Since then I have at different times done PT and had essentially the same feeling of disappointment despite the fact that many people said "do the exercises, it will help". Still, I could not see any sign of progress. And then on April 1st, walking in the park, I fell and fractured my arm. Since the fall my balance is bad enough that I almost always use a cane and am thinking about getting a walker (which no professional has suggested). And then....you come along with your gung ho message and make me pause! 🙂 I think to myself, is it really possible that exercises could significantly improve my balance?

I have taken note especially of the step exercise you mention. The steps available to me in my apt building are 7". Do you think that is low enough for me to practice? Courtesy of you I'll have to get serious about proprioception!

Thanks again for your rich supply of information!

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@joyces After writing my reply above, I went to my "balance folder" and found a whole collection of dialogue with you and others on this subject. When writing tonight I had a feeling that someofwhat I wrote was repetitive. Sorry! But now I want to comment on your talk about your "stubborn" husband (about helping himself with his health problems) and others comments about their "uncooperative" spouses and depression. I was once in a similar position with my husband who has since passed away. All of you burdened and frustrated caretakers should check out the Well Spouse organization. It is terrific, was a major support to me and has been very helpful to so many. All that's needed is googling it.

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@barbb

@joyces Thank you Joyce for your reply. It's a real treat to get this history and so much more! One of the places for VRT you didn't mention is Rusk (NYC) where I have been. They were very helpful to me with my balance after a tumor was removed from my acoustic nerve, which, during surgery irritated my balance nerve and thus I had hardly any balance for a while. But since then I returned years later to shore up my not too great balance, and felt that the therapy accomplished little. (I would think it was VRT the 2nd time but don't know for sure.) At any rate, I was disappointed, feeling I saw no significant progress. Since then I have at different times done PT and had essentially the same feeling of disappointment despite the fact that many people said "do the exercises, it will help". Still, I could not see any sign of progress. And then on April 1st, walking in the park, I fell and fractured my arm. Since the fall my balance is bad enough that I almost always use a cane and am thinking about getting a walker (which no professional has suggested). And then....you come along with your gung ho message and make me pause! 🙂 I think to myself, is it really possible that exercises could significantly improve my balance?

I have taken note especially of the step exercise you mention. The steps available to me in my apt building are 7". Do you think that is low enough for me to practice? Courtesy of you I'll have to get serious about proprioception!

Thanks again for your rich supply of information!

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Reply to barbb about balance exercises: If you spend as little as 15 minutes a day for a month, you should see improvement. Then, the trick is not to get cocky and slack off a lot! It's soooo easy to enjoy better balance and think you've done quite enough, but you really need to work a little every day. Years ago, in my 40s, I spent 4 years in Meniere's hell...as many as three times a week I had crises that lasted 12-15 hours (unable to move from wherever I went down, vomiting, no fun whatsoever). I did continue to manage a small publishing company, and there were lots of fishing trips. I've had crises in planes, boats, lodges, restaurants, cars...you name it! I was constantly afraid of falling, afraid that everyone around me wanted to push me down. I knew that wasn't true, but that's how fearful I was. Having a conference in the area where we assembled pages was a trial, as I had unreal fears that everyone was just waiting to knock me down...even though I knew that wasn't true. Wading and hiking were true tests, and I was fearful every minute.

As soon as I got Meniere's under control with hormones, I started working on proprioception. Within a month I was far more confident of being able to move around. In two months, I was able to climb a ladder to clean gutters...and that made me able to wade much better for a couple of days. Anything that challenges your vestibular system will make you more stable for a short time. I was amazed to learn how many things there were to see when I didn't spend all my time along the river staring at the ground ahead of where I was hiking! Three months after starting daily work, I was playing coed basketball with my grown kids...and stole the ball from one of my son's friends, who was devastated. <g> I often took groups of young people (high school and college) on fish surveys and was amazed that they weren't able to keep up with me. The year before, I had struggled to keep up, and now I was far out in front!

This year, shortly after getting the Meniere's monster firmly locked up again, I installed temperature monitors in a wild little river. Just walking was a challenge, and wading was 100% fear. Two months later, after just three appts. with the VRT specialist, I hiked and waded the same stretch with confidence. I'm 78 now, and most people are amazed at all the things I do--and that's the way I want to keep it! Once a week I drive over a hundred miles each way to load roughly 500 loaves of donated bread (about 800 pounds, lifted two or three times), and the following day I unload and pack that into freezers, then pull bread from freezers and deliver it around town. All the lifting means that I'm keeping my bones extra strong. I did fall, badly, twice this past year after going bilateral, but I didn't break anything.

Time to check the tide tables to see when the next set of good tides for crabbing will be so that I can hook up the boat, toss in the pots, and bring some crabs home for dinner.

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