Talk to Me
This was my audiogram results last year. You can click on it to get a bigger picture.
To understand how to read an audiogram, click here.
The "rollercoaster track" lines with the "0" is my right ear-the good ear. The ones with the "x" is my left ear. I really don't get much use out of that ear. I feel vibrations in that ear, though.
As you can see, the hearing loss sharply slopes to the right. I hear low sounds better than high sounds, which is typical of those with Usher Syndrome Type II. (This website has a table-you'll have to scroll down a little- showing the differences in hearing loss in each Usher Syndrome Type-Those with US Type II: "Born hard of hearing with a sloping sensorineural loss from mild loss in low frequencies to severe-profound loss in high frequencies"). I want to point out that everyone is different. There are some people with US Type II who are profoundly deaf. Some have cochlear implants that help. It varies.
To understand how to read an audiogram, click here.
The "rollercoaster track" lines with the "0" is my right ear-the good ear. The ones with the "x" is my left ear. I really don't get much use out of that ear. I feel vibrations in that ear, though.
As you can see, the hearing loss sharply slopes to the right. I hear low sounds better than high sounds, which is typical of those with Usher Syndrome Type II. (This website has a table-you'll have to scroll down a little- showing the differences in hearing loss in each Usher Syndrome Type-Those with US Type II: "Born hard of hearing with a sloping sensorineural loss from mild loss in low frequencies to severe-profound loss in high frequencies"). I want to point out that everyone is different. There are some people with US Type II who are profoundly deaf. Some have cochlear implants that help. It varies.
To get a better understanding of certain sounds that can be heard at various decibels, click here.
Anything below 70 dB is quiet. With my hearing aid, if memory serves me right, I am in the 40 dB range. That's how much a hearing aid can help me.
Some people are amazed at how well I do with the hearing I do have. I speak orally and clearly. I do best in a quiet environment. If someone else is talking in a group, I don't do as well. Anything I hear in the background overpowers any conversation I am making or being made to me.
I wear hearing aids. It's just a tool to amplify sounds. It does not make me a "hearing" person. It doesn't automatically make me hear everything that a person with normal hearing can. I still need repeats. I could be wrong, but I am sure cochlear implants are the same way. It helps you hear better, but it doesn't make you "hearing". When you turn it off, you're still deaf.
As long as I am wearing my hearing aids, I can hear the phone ring. Sometimes I understand the speaker on the phone, sometimes I don't. I can hear dogs barking, birds chirping, kids giggling, paper crinkling, TV or radio, but environmental sounds are easier for me to hear than regular conversation.
I just want to say one thing, and I am sure I speak for everyone with hearing loss, please don't yell when we don't understand you and you have to repeat yourself. Yelling just increases the distortion. At least for me it does. I can only make a few words out here and there over an intercom or answering machine message. If I try to increase the volume, it only makes it more distorted. (I just don't understand why some people can turn on their car radios so loud that the whole street vibrates-do they really "hear' it? It's just noise.) Just speak clearly and paraphrase what you said if you have to. Change a few words if we don't get it the first or second time around. Just because we are the ones with the hearing loss doesn't mean we have to do all the work when it comes to communication. We get frustrated, too. Remember, communication is a two way street.
So next time you visit your grandmother, your elderly father, a relative, friend, or co-worker (even your spouse) who may have a hearing problem, talk with them-patiently. If they need repeats, don't raise your voice at them. They aren't doing it on purpose.
Some people are amazed at how well I do with the hearing I do have. I speak orally and clearly. I do best in a quiet environment. If someone else is talking in a group, I don't do as well. Anything I hear in the background overpowers any conversation I am making or being made to me.
I wear hearing aids. It's just a tool to amplify sounds. It does not make me a "hearing" person. It doesn't automatically make me hear everything that a person with normal hearing can. I still need repeats. I could be wrong, but I am sure cochlear implants are the same way. It helps you hear better, but it doesn't make you "hearing". When you turn it off, you're still deaf.
As long as I am wearing my hearing aids, I can hear the phone ring. Sometimes I understand the speaker on the phone, sometimes I don't. I can hear dogs barking, birds chirping, kids giggling, paper crinkling, TV or radio, but environmental sounds are easier for me to hear than regular conversation.
I just want to say one thing, and I am sure I speak for everyone with hearing loss, please don't yell when we don't understand you and you have to repeat yourself. Yelling just increases the distortion. At least for me it does. I can only make a few words out here and there over an intercom or answering machine message. If I try to increase the volume, it only makes it more distorted. (I just don't understand why some people can turn on their car radios so loud that the whole street vibrates-do they really "hear' it? It's just noise.) Just speak clearly and paraphrase what you said if you have to. Change a few words if we don't get it the first or second time around. Just because we are the ones with the hearing loss doesn't mean we have to do all the work when it comes to communication. We get frustrated, too. Remember, communication is a two way street.
So next time you visit your grandmother, your elderly father, a relative, friend, or co-worker (even your spouse) who may have a hearing problem, talk with them-patiently. If they need repeats, don't raise your voice at them. They aren't doing it on purpose.
Labels: hearing aids, RP/Usher Syndrome
28 Comments:
Thank you for the reminder Shari, and I will keep this in mind. You are absolutely right that it shouldn't be left up to those with the hearing loss. I had a severe ear infection as a child (before ear tubes became common practice) and wound up with some hearing loss in my left ear. It only means that I don't do well with the phone in my left ear. I am grateful it is only that. I am learning so much from reading your blog. Thank you.
Great post Shari. Very informative.
MrsGrumpy-If I can help one person empathize what it is like, then I've done what I intended. To inform.
Michelle-Thanks. It was my intention. :)
you do a real service here, shari. i have a dear friend whose daughter is profoundly deaf but who had 2 cochlear implants. they are very open about various issues and i've gained a real education by knowing them and so have my kids. things like making sure i face her when i speak, the not yelling, and making sure i don't slow down my speech so far that i become hard to lip read because i am now forming my words abnormally.
Thank you, Lime. Sometimes I think I give TMI (too much information) and turn away some readers because it may be hard on them to read it, especially when I talk about the RP. Again, thanks.
Hi Shari,
Yes, you did a great job on this posting. Thanks for doing all the work to put it together.
No doubt about it, lipreading is such an automatic way to compensate for hearing loss. That's why losing our vision, and thus our ability to lipread, makes it MUCH harder to understand speech.
Anne
Thanks, Anne. I was never really the best lipreader to begin with. I guess I relied on my "hearing" more and I did know sign language, though I never used it with family or hearing friends that much. But it is true that lipreading is compromised when vision is continously narrowing down.
Thanks for the information. I hope lots more people read this. My mother had some hearing loss in her old age & she used to get really upset when people talked louder when she couldn't hear.
This post helped me understand how to speak with people who have a hearing loss. Thank you.
And I had no idea this blog existed (it's great!) - I just came over from the link on The Daily Three.
How do you manage two blogs? You're amazing!
In his later years my father had hearing problems. Though he never used hearing aids but we had to be very patient with him. Speaking slowly and repeating.
Thanks for this post. It brought back memories of my dad.
Glad Michele sent me here.
Very informative. I have a blog friend that is very deaf and uses a assistance dog.
Fascinating. My blog friend, Jennifer, has a cochlear implant, and is going in for her second on next month. I link to her blog in my side bar. Jennifer, a woek in progress ( the bionic woman)
God bless you, today and always
Hillgrandmom-I am hoping that this post would help others. :) Thanks.
Beth-I am glad. How do I manage? Like I do with everything else, I just DO. :)
Gautami-You're welcome.
Yellojkt-Some do use a guide dog for the deaf. They have guide dogs for those in wheelchairs and for the blind. Amazing what they can do.
David-I've been reading Jennifer's blog for a while now. I am happy for her that she's getting her second CI. God bless you, too. :)
Michele sent me to visit you today-
I have nerve deafness in one ear though my other ear has normal range hearing. I understand your points very well! I find I do better with voices in certain ranges than others.
My husband seems to be the opposite, he hears high tones better than low tones. Your advice is very helpful, though. Michele sent me
The trouble is people think you are ignorant in not answering them, when you are actually unable to hear them.
Michele sent me here.
I think its great that you're able to turn your experience into something that others can relate to and that you're so aware of how your situation relates to others - it isn't just you who doesn't want to be shouted at :)
Great post!
Thank you for speaking for people like us. Really sensible and worthwhilw advice.Its so difficult to explain all this to hearing people.i really appreciate your post Shari.
Thanks, everyone. Just trying to make it easier for everyone who has a hearing problem. I can't hear anything at a wedding reception or any other large gathering...so noisy (too much background noise-people talking, music). I watch people talking, some don't hear and they turn their ear to the speaker to talk into their ear...so I know that it can be hard to hear in a noisy environment for hearing people, too. Many probably aren't aware of mild hearing loss.
Shari, as always I come away from your posts with a new understanding. My son, Julian had to have his hearing tested early on to rule out any hearing loss because of his late start talking. I wish I could say I truly understood those results except to say that he needed bi-lateral tubes to drain fluid which had gathered behind his eardrums, a procedure which he had twice. Also my mom faces diminished hearing each year and this is a reminder to be sensitive to what it is like for her.
So all that is to say that I appreciated your post, your viewpoint and the links. Thanks very much.
G-I am glad that you are gaining some insight from me. :) No one likes being yelled at because they can't hear. I thought I'd add the links to it so I wouldn't have to explain everything. It'd be a loooog post.
I hope your son's ears are okay now.
I think you rock and have tagged you as such....
Great advice. Thank you.
Terrific blog, I have been reading all around, in it.
Cipriano-Thanks. I'm glad. Mostly, I just want to share my experience and knowledge and inform people about Usher syndrome. :)
Hi there,
I came across your blog after doing a google search in the hopes of finding a bike helmet that wouldn't knock my son's coil off. I didn't find that, but I did find your blog and I've been finding it very interesting!
I saw on one of your older posts that you were thinking about a cochlear implant and just wanted to let you know that my son, who is almost 6, had an implant when he was 14 months old. He's profoundly deaf in both ears, but he only has the implant in one ear. We've decided that he can decide when he's older if he wants to have the other ear done or not. Anyway, he's doing GREAT with the implant. He doesn't want to take it off, even to sleep! He just started Kindergarten this year, and he's in a regular class...he's the only deaf kid in the entire school, and he's doing fantastically. He doesn't take speech, has no IEP...most people are shocked to find out that he's deaf. He can even hear me when I whisper while turned away from him and across the room! I know that the reasons for hearing loss are different for everyone, and that not everyone has as much luck with the implants as my son did, but I did want to let you know that my son is a success story and we're very happy that he had the implant. If you are thinking about having one and want to talk to us, please feel free to email me. Good luck!
Thanks, Kim. Yes, I am still looking into CIs. The biggest issue I have is transportation and support. The CI place is an hour's drive and I would need to find a driver and there are nay-sayers (maybe those who know others with CIs that don't work so well for them).
This was so interesting. I get so uncomfortable when someone doesn't understand me, or if I don't understand them. I never know how many repetitions is "okay," and at what point we should give up and try a different way of communicating, like writing things down. I run into this problem more often with accents than with hearing, but I do run into both.
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