Last post Thu, Jul 24 2008 8:36 PM by gargoyles. 57 replies.
Hey, I'm interested! I have Meniere's disease and have lost most of the hearing in my right ear, in addition to having disabling vertigo. In practice, this means if there is more than one person talking, or any background noise, what I get is indecipherable cacophony. I lipread (it's part of how I figured out I was losing my hearing - suddenly realizing if I couldn't see someone, it was darn hard to figure out what they were saying unless they and I were the only ones present.) People don't understand that I really can't understand what they are saying since "you are only deaf in one ear", and most people don't understand how much positioning the head to focus hearing is used to screen out background noise.
I am also unable to return to work as a software engineer/programmer/analyst since prolonged exposure to CRTs has a nasty tendency to trigerr vertigo with attendant nausea and vomiting. It's terribly, terribly frustrating because my other thing was writing which is also difficult since it involves the computer, the CRT, etc. And sometimes I can't drive for days because I either have the spins or I'm taking medication to stop the spins too drugged to drive safely - some of the medications can make me sleep for about 20 hours a day.
Honestly, sometimes the culturally deaf make me feel more like a freak than the hearing; I can still hear enough to do things like play guitar as long as there isn't any background noise, since my left ear works, and, God willing, will continue to do so, and I don't speak ASL. It's really frustrating because I find that my voice can get terribly loud when there is background noise because sometimes my own voice becomes part of the background noise and it is hard to check the volume although I'm getting better at detecting how much air and muscular tension I'm using which I figured out on my own can help me regulate volume.
Anyway, please to excuse my whining; but expressing my fears and frustration in front of friends and family isn't comfortable for me so I wind up bottling things up. My biggest fear is that the disease will spread to the other ear and leave me totally deaf, which would be a major bummer for someone addicted to trying to learn guitar, languages, and conversation.
Cochlear implant for Meniere's? How does that work? I'm having a shunt put in to try and drain the excess fluid from the inner ear to stop the vertigo - but my doctors have never mentioned cochlear implants.....
YakimaBelle: Anyway, please to excuse my whining; but expressing my fears and frustration in front of friends and family isn't comfortable for me so I wind up bottling things up. My biggest fear is that the disease will spread to the other ear and leave me totally deaf, which would be a major bummer for someone addicted to trying to learn guitar, languages, and conversation.
Go ahead and let those thoughts and fears out here. I grew up hard of hearing and lipreading my way through life. I became profoundly deaf at the age of 19 and it was quite an adjustment period for me. I remember crying my eyes out to my hearing roommate, who didn't understand why I couldn't just "get over it." When I found some friends who dealt with progressive hearing loss, it was with them that I could whine and complain and get an empathetic ear (pun intended, LOL!). I found my way into the Deaf Community and for me, learning ASL was actually a life path that opened the world up for me.
You might want to join the Association of Late Deafened Adults www.alda.org and connect with others there. Hearing Loss Association is another place to connect with people. http://www.shhh.org/
Check out a book called "I've Lost My What???" by Shawn Lovey-- a good read!
Fortunatly Some airports are now working out a way to send announcements to your hearing aids now. Iam not sure how this works exactly I read an article. but yes. Alot places i have been as well seem to not have any accomodations for Deaf HOH. Some restertaunts refuse to put on CC because other people complain they cant see what they are watching. Usually it is sports so I dont care but I think they should make it accesible to everyone!
When I travel, I have an alert set up via the airline that notifies me of any changes starting three hours before the flight leaves. It also notifies me of gate changes. The notifications are sent to my pager via email.
Some days good things happen . . .
I not positive exactly how I got here but I did, and that's great.
I've learned some new stuff, way too much to immediately absorb, but like everything else, I'll work on it.
I think this site may get my ASL quest back on track, it appears my particular situation isn't unique, although I might have adjusted better at a younger age.
This is my initial contact, kind of a general "thank you" to all. But special thanks to you . . . DeafMom
Yeah, you'll have good days and some bad days but slowly and surely you'll get to a place where you'll get comfortable and able to embrace this new journey.
If I can help, give me a holler. Of course, I probably won't hear it. LOL
Thats is cool! I dont travel much, but if I do I just turn off my HA and try to get by. Can be very frustrating and get some obnoxious stares.
But you do what you can!
I just joined this site and I am responding to this whole thread. Many are suggesting there is no place on this site for people with hearing loss to go to and share their stories. So ... guess what? I placed a request to begin a new forum under "Hearing Loss" where we can all go and share these stories and experiences, gather comments and try to help each other out.
I am severely Hard of Hearing and have faced many of the same issues all of you are placing on this thread! I figure maybe I can help out by sharing what I experienced and what I did to deal with it. I also would want yuo all to share your experiences too!
I am on the board of a Deaf and HArd of Hearing Service agency (non-profit). I know sign language, my hearing has gotten worse (although I have been hard of hearing all my life). I haev expericned the pain and humiliation of many of us go thru because of the ignorant attitudes of hearong peple who think hearing aids "Correct" your hearing.
I am now also published in a book about Hard of Hearing.. called "On The Fence: The Hidden World of the Hard of Hearing". I am Mangaing Editor of an employee organization for the Deaf and Hard of Hearing in eth federal agency I work for.
The single largest group of people woth hearing loss are (or is?) those who have suffered hearing loss later in life. Many are in denila and refuse to acept the fact they are Hard ofHEaring. Many go thru stages from denial final acceptance, but can take years and some never get beynd teh denila stage. One big problem I see is there is no connectvity in thsi communtiy of Hard of Hearing. The Deaf have sign language as tehir comon conenction, but there are many deaf who do not use sign language. Many of us develop teh ability to lip read eitehr on our own or thru training (if you grew up HofH), but there doe snot seem to be any training in lip reading for late-deafened adults.
If you are looking for someone to be your advocate, forget it! ONLY YOU can adviocate for yourself. Yes there are many people and organizations out there that help and even advocate for hard of hearing, but the best peron toadvocate for you is youI You must be you own advocate! The best way to do so is to seek and arm your self with knowledge!
My hope is we can do just that in the new forum under Hearing loss! Lets help each other out and advocate for ourselves! I am more than willing to share my knowledge.. can you help out and share yours?
Right now, am wainting for the "approval" for the new forum on this site.
Thanks for the request. It will happen and by this week. I will send a message to the tech folks to get it up there.
Also, we have an entirely separate health condition coming called "Hearing Loss" that an expert physician (ENT) is working on for us and he has told me that I should get it delivered via email on Monday or Tuesday. Then we need to edit it. We also have images created and are working on an animation of how hearing works (or doesn't work). I hope all of that is useful and we will continue to desire your feedback.
Thanks for waiting.
Hi all I'm new here too. I was disapointed to see there wasn't much on Deaf/HOH.
My son is 7 and HOH since birth. I'm the mom!
Debi
