Adjustment to late onset deafness

let us know how it goes, Simown :)
 
tommys said:
Hi candy. Your experience is similar to mine. But you're still lucky because everything that happened to you was not so suddent. I was HOH since 8 years old, so i only hear with my left ear. Untill 3 years ago, one night, i had a great fever. My hearing turned down slowly, with many ringing and buzzing noises in mid ear, just like what happened to you. And i was totally deaf in the morning, untill now.
I don't enjoy it, but i can't regret it either. But not like the others who learn ASL so quickly, I prefer learn "MOUTH" first. That's because when i was still "half" normal, HOH, i learn people's talk trough "MOUTH" too. Even i used to watch TV on mute.
Yes, i like to learn ASL too, but in my country, it's not easy to find place/community that teachs ASL. If they are, they asked me to pay just to learn ASL, which the amount is not suitable for me. So, here i am. Joining this community, with hopes i can learn ASL better manually.

Bydway, i suggest u to try the accupunture method. It's very useful and no pain. It doesn't cost u much too. because accupunture relates to neuro system, things that broken on us. I've tried it, and it gave me progress.

So, that's my suggestion, and hopes we can make friend. Take care !
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Hi Tommys,

I live in Thailand and don't know anyone who is Deaf or who knows ASL. (Though I have discovered that TSL has adopted many ASL signs) I am learning ASL from You Tube, Signing Time (together with my younger kids - {my husband and kids are all hearing}) and also from http//:ASLPro.com Home. I am happy to use it just at home with my kids - it helps release the pressure and stress of being out there in the 'hearing' world. If I ever get the chance to meet up with anyone who understands and uses ASL then I will gladly welcome the opportunity to communicate in ASL.

Hope the info helps. In addition, I recently discovered I can practice watching someone using ASL on YouTube by typing in: Deaf -stories; and also ASL Movie trailers etc. It is not a bad substitute for a one-on-one conversation. I have been amazed as to how much I have been able to comprehend in just a few weeks of learning ASL. I appears I have graduated 'ASL Kindergarten' already at least. It also helps combat the isolation of not having a Deaf community close by that I can feel accepted, being a 'foreigner' already isolates me (I'm Australian). I am so glad I have discovered AllDeaf.com - Thanks for welcoming me everyone!
 
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sallylou said:
I don't wear my HA all the time and my family understands. It's not that my HAs are uncomfortable. It's that I need a break from listening. One of the first coping skills that I adopted was allowing myself down time after I've spent a significant amount of time listening. Listening for long periods of time is exhausting. I become very fatigued.

There are two things that I wished hearies would understand. First, it doesn't matter how loud a sound is, if it's in a range that I've lost, I still can't hear it. This should be a no brainer but it eludes people. Second, it doesn't matter how much you magnify the sounds that I can hear, it's still distorted sound that I have to make sense of, which requires great concentration and effort on my part. That's why I get tired and that's why I give myself rest time.
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You have described very well what wearing HAs is like. I'll vouch the same experience. I found it tiring and needed rest times as well. I finally discarded them, they were too much of a nuisance and also caused too many problems with my ears such as infections chaffing or cuts from my glasses to name a few. But then for some they are a blessing.
 
Braydens Mom said:
Thanks!!
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Count me in as your friend too. :) Maybe we should change the label HoH as I have heard Deaf people being called profoundly deaf - so we can all be in the same bandwagon as partially-deaf; severely-deaf etc. We all face similiar discriminations and mis-understandings from the hearing world. That's why we are all here at AD isn't that right? I know that we need to earn our D badge but we all have the right to the d badge in my opinion, unless you do not have any hearing loss. Then you can be either CODA (Children of Deaf Adults) or FODA (Friends of Deaf Adults). Or ASL Interpreters who I hope are friends as well.;-). We are all what makes up the Deaf Community. This is my understanding of how it all works. We all have a place, but from my own experience, as many are getting to know, I would prefer to be in the 'deaf' category than in a 'no man's land' as our friend Grummer quotes. I am putting 'feelers' out with this comment. I would love to have feedback on my comment. As least, to know where we all 'fit' in.
 
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There's a thread on deafness and labels on AD. I think that the consensus is that ADers should call themselves whatever they feel comfortable with.

Right now, I call myself "hard of hearing" because I have BTE hearing aids with some hearing. I cope in the hearing world but I'm not hearing. It's the "no mans land" as you say. I have progressive loss, and I have no idea how quickly I will progress to "deaf." I'm not really sure how "deaf" is defined. I definitely want to fit in the Deaf community somewhere.

I understand why some people don't want to wear HA. I don't wear my HA around the house very much. I put HAs in when I go out or when I want to watch a movie without headphones. My audio readily admits that my HAs do not physically fit well. Her excuse is that she gave me the smallest tube that Oticon makes. Sucks to be me! At least only the tube is in my ear so that I don't have too much difficulty with infections or wax. They are itchy, though.
 
Thank you, SallyLou, was thinking my comment should have been on another thread. :ty: for the reminder that we are what we define ourselves as....like it is in highschool. But we are all in the same highschool. :)
 
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AliciaM said:
I started to notice my tinnitus first, and then I noticed that I was losing my hearing. I was about 16 when that happened. I went to an ent/audi who told me to lay off the caffeine and such for the tinnitus and to deal with the hearing loss. I then went to CHEO and the audi told me as well almost the same thing and told me I didn't need hearing aids even though I was struggling a lot in school. I finally went to a diff place the summer I graduated from high school when I turned 18 and I got my first hearing aid for my right and then I just recently got a new set of hearing aids for both ears since I lost more hearing. My hearing loss is supposedly genetic and progressive and they don't know if it will get worse. I have been interested in ASL for a long time and am taking ASL 1 in the summer:)
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I haven't had the chance to read any of your other posts, was wondering how old you are now and how much of your hearing you have lost since you started noticing you had a loss? They told me when I was 15 at a high school screening that I had what they called a cookie bite loss. the bass tones and treble tones were ok if not some better than normal but the mid tones were horrible making the test result print out look like the shape of a bite mark. Now my hearing has radically changed to me, the mid tones are close to the same loss but the bass tones are dropping a lot and the treble are staying ok. some of the higher pitch treble tones, (like the sound the T.V. makes while it is on or coming on) I can hear when the average person can't. Believe it or not, I can't really hear the young people going down the road with their loud music except the really high tones, I actually can tell people that they are coming down the road by feeling the bass. Of course most of my friends and my husband can hear them before I can but to me I feel the bass about the time they say they can hear them. (IDK? Does that make me weird or just a little different?):hmm:
 
Jalestra said:
Not looking for anything requiring surgery. LOL I've been put in contact with a couple of groups in this area, but until you are diagnosed they don't want anything to do with you. I can't get them to understand I need HELP getting diagnosed! Finding a good doctor and such. The most help I have gotten is "you need to see an audiologist, not an ear doctor". Which was great, because I was seeing an ear doctor, but no suggestions of a good audiologist.

Jillio, I know they are their own responsibility, but I know what's going to happen. I'm going to lose my hearing completely and they are all going to be scrambling to catch up. I just don't know how my reaction will be. It's one thing to get used to HoH and face the fact you are going deaf, but it will probably be quite another to BE deaf. I hope I can wake up and say "I knew this was coming and it's just another day with a new snafu", but I don't know. I'm doubting it'll be that simple. How do I know they will be there to help with the children and the final adjustment if I can't even get them to accept and adjust to this? I just don't think it'll be fair of them to be suddenly adjusting when I, the person most affected, has to shore them up so they can help me. I have kids, I wouldn't feel comfortable internally processing unless I knew someone was there watching over them. I don't even know what's going to happen. Will I wake up deaf? Will I be sitting on the phone and suddenly be deaf? On one hand I can see it easily being like losing a dear friend and needing some time to grieve, but on the other I've been adjusting to hearing loss for 3 years, so maybe it's just going to be "ah, there it is. Time for plan A!". Of course none of you guys can tell me that, but not knowing means I'll need my family more. If it wasn't for the children I'd let the adults be, but I have to prepare for the kids too. At least I feel I do.

I do have a question for other HoH folk, do you guys ever "reboot"? Something that's been happening since my first significant hearing loss, sometimes the noises will overwhelm me. Too much noise conflicting and it's like my brain says "I GIVE UP! WE'RE SHUTTING DOWN!". I zone out for a second and am completely deaf for a short time (about 15 minutes or so). And it's not necessarily loud noises, just conflicting noises. I call it rebooting, it kind of reminds me of a messed up computer I once had LOL
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Jalestra, Hi! I'm partially deaf. (Hearing loss moderately severe to profound)Since your hearing loss is progressive, then you are able to prepare ahead somewhat. In your own situation, the best people to get alongside you with this are your own kids. My suggestion is that you start learning ASL (if you haven't already) and learn it together with your kids. The kids pick it up very quickly, it helps you to practice and it can be a fun experience. Signing Time on You Tube or (Baby Sign Language & ASL Baby Signing DVD's. Learn Baby Sign!) is one I found that is geared to toddlers, preschoolers and young kids and makes learning sign fun and easy and it is good for starters; also ASLPro.com Home online dictionaries. My kids are 'hearing' too and they love these shows. This way, I believe, when the time comes, your children will able to adjust easier as well, and your world won't change all that dramatically, as you will have been versed well enough in sign hopefully by then. It is amazing how kids can bring adults 'around'. With the kids on board, the adults in your family will soon follow suit.
 
Some of you may have noticed that I haven't been around very much. My Menieres has really been out of control this last couple of weeks and I have had some of the worst attacks yet, with that comes the fluctuating hearing loss and even the hearing that doesn't come back. Some would say I have slipped into a depression because I am having a hard time dealing with my hearing loss. Its probably true, everyone around me is hearing, my friends, family etc. I hardly ever leave my house and when I do I dread having to have conversations with people.
I was adapting fine but with the hearing loss comes so much more for me, the vertigo, nausea, dizziness. I had a really bad attack the other night and I was 2 seconds away from beating my head into the wall =/ I have been to a couple Deaf events around here but always feel weird because I don't know anyone and they all seem so close to one another and my ASL isn't up to par yet but I am practicing as much as I can.
I'm not feeling sorry for myself but I was reading a thread on here earlier that mentioned something about being able to just adapt if you lost your hearing. Its been hard because its just getting worse. Music doesnt sound the same even with my aids, sounds are getting mixed up and its all just so hard for me to take in because its happened so quickly.
Anyway sorry about this rant. I should be able to be stronger but there isnt anyone in the world I can talk to about this.. except you all. so thank you for that.
 
candybrowneyes said:
Some of you may have noticed that I haven't been around very much. My Menieres has really been out of control this last couple of weeks and I have had some of the worst attacks yet, with that comes the fluctuating hearing loss and even the hearing that doesn't come back. Some would say I have slipped into a depression because I am having a hard time dealing with my hearing loss. Its probably true, everyone around me is hearing, my friends, family etc. I hardly ever leave my house and when I do I dread having to have conversations with people.
I was adapting fine but with the hearing loss comes so much more for me, the vertigo, nausea, dizziness. I had a really bad attack the other night and I was 2 seconds away from beating my head into the wall =/ I have been to a couple Deaf events around here but always feel weird because I don't know anyone and they all seem so close to one another and my ASL isn't up to par yet but I am practicing as much as I can.
I'm not feeling sorry for myself but I was reading a thread on here earlier that mentioned something about being able to just adapt if you lost your hearing. Its been hard because its just getting worse. Music doesnt sound the same even with my aids, sounds are getting mixed up and its all just so hard for me to take in because its happened so quickly.
Anyway sorry about this rant. I should be able to be stronger but there isnt anyone in the world I can talk to about this.. except you all. so thank you for that.
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Hang in there. Meniere's sucks bad. It will release its grip on you again. I always hate how it suddenly reminds us that it never really went away, like an evil curse. There is no way to avoid depression when this happens. Just deal with it as best you can. I understand the feelings of shame and embarrassment. I remember hoping the grocery cashier does not ask me a question when the people behind me are in a hurry and glaring at me. Seeing people I have not seen in a while and not being happy about it, because they did not know the new me. Don't let it drive you into a corner, like it did to me. I spent 5 years in a self imposed funk. Most people I knew before Meniere's gave up on me. That just fueled more depression. A very vicious cycle...
 
The big key is to prepare I think.....I didn't and I wish I had. Now I am caught in a situation where it's hard to be social with old friends. At the same time I don't know ASL yet so it makes attending functions for the deaf very difficult. When I gather with my hearing friends I see the laughter and wonder what I am missing out on. I have attended a couple of Deaf Happy Hours in the Dallas area. Not knowing ASL I felt like I was in another country and didn't know the language. I've gone from being the guy who was very social and never shut up to being very shy. I am trying to learn ASL very quickly now.
 
dogmom said:
yes :hug:candybrowneyes!
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I second the hug.

I _hate_ having Meniere's. Sometimes I feel like I'm not just losing my hearing, I'm losing who I was as a person. On bad days, anything can set it off or make it worse. Bright lights, things moving in odd ways, even having some ham in my sandwich (from the salt -- sometimes ham/things made with salt don't bother me, sometimes they're the straw that broke the camel's back!) And some sounds -- like dogs barking, or young kids' high voices -- really hurt. On a bad day, regular sounds hurt AND make me nauseous.

I was a musician. More than that, I was a really social person who liked new things. I HATE wanting to hide in my house!

I can accept going deaf. I grew up around Deaf people. It's harder to accept vertigo, nausea, and pain. It's hard not knowing what to expect -- my hearing changes from day to day. So does all the other Meniere's stuff.

And a question for candybrowneyes and anyone else with Meniere's -- do you ever have times when your hearing isn't dipping, but your balance is? Mine don't always seem to be connected.
 
ms_redcat said:
I second the hug.


I can accept going deaf. I grew up around Deaf people. It's harder to accept vertigo, nausea, and pain. It's hard not knowing what to expect -- my hearing changes from day to day. So does all the other Meniere's stuff.

And a question for candybrowneyes and anyone else with Meniere's -- do you ever have times when your hearing isn't dipping, but your balance is? Mine don't always seem to be connected.
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I am the same way I can accept the deafness it is all the other things that are coming with it. As for your question yes more times than none they are not connected. Today was a bad day, my head hurt like something horrible, anything i tried to focus on started to move and I couldnt stand up strait but my hearing seemed to not fluctuate at all. Other times its just my hearing and nausea, nothing is ever the same for me. I am sorry you are going through this as well. At least we have a place where we can talk about it, others just dont know. :hug:
 
I have been fortunate to have less vertigo and nausea than the normal amount for Meniere's. But the comments about "I'm losing who I was" strikes a cord with me. Well said. As for the vertigo without hearing loss, I have not had that so much, but have had the ringing get much louder and the fullness feeling get strong, without the severe hearing loss. The head full of noises does tend to mask sounds, even without the actual lost hearing. For me, when the fullness begins, I think I actually bring the rest of it on by getting pissed off that "Here I go again" thinking creeps into my mind. Does that make sense?
 
Love to you Candy, hope you are better very, very soon.
 
By the way, has anyone seen November Gypsy or gotten any messages or anything?
 
Hi There....I am new to hearing loss....late in life....

Hi All,

I have been dealing with the fact that 2 years ago, I suddenly lost my hearing and even though I had a tumor removed from my left ear, my hearing has deteriorated even further. It's actually kind of ironic how everything came about. The day I laid my grandmother to rest I was getting into my car after the service and suddenly my hearing was cut in half. I couldn't believe it, but someone HAD to be watching out for me to allow my hearing to go only after the comittal service for my grandmother was over. Anyway, I went to an ear nose and throat doctor who told me that I had to have a Cholesteotoma tumor removed and it was done, but my hearing still deteriorated and I went for a hearing test this past April and found out that I have lost a good deal of my hearing loss ...I have "mixed" hearing loss and will be getting 2 hearing aids (Purple...LOL) next week.

Even though I admit to having difficulties accepting the loss of a great deal of my hearing because it's not something that I am used to dealing with, I find that the more difficult issues that I deal with are the lack of understanding by those who can hear perfectly normal, and their annoyance with me because I have to constantly ask them to repeat themselves and even then, I am not sure that I hear them correctly. How is one to adjust to such adversity?:ty::roll::ty:
 
(((candybrowneyes))) I'm sorry that you're feeling so poorly. Medical issues are hard to deal with, even without the hearing loss. It's a lot to deal with both medical symptoms and resulting hearing loss at the same time. I'm glad that you can share your feelings here.

Is there as support group for that particular disease in your area? You could get more info and support in real life? If family members could learn more from a support group, they would be in a better position to support you, too.

HB617, I understand your frustration. Give yourself permission to advocate for what you need. If you need someone to slow down and face you directly, tell them that's what you need. Other people don't notice hearing aids so I tell them that I'm HOH. Learning to speak up for myself has helped.
 
I am not new to AD but I have not been active on here in a long time. If I remember right this thread wasn't even around when I stopped visiting the site. I've been busy with a new kid, knee injuries, and depression so my hearing problems took a back seat. I figured I would re-introduced myself in this thread. It's kinda funny how things play out sometimes. I was actually watching an episode of Cold Case that involved a deaf school and a student that gained his hearing from a CI. That made me think about my hearing loss and now here I am.

I am a 31yr old male in the Tampa bay area with mild-moderate hearing loss (as of last audiogram 2 years ago). My hearing loss probably started around age 23 but wasn't diagnosed until age 29. I was told my loss is noise induced and will be progressive with no way to know how fast it will fade. After being diagnosed I got a pair of phonak micro savia bte's. It wasn't until then that I realized how much I had actually lost. I got alot of material and research on asl and the deaf community but no matter what I found out I was extreemly nervous about going deaf.

I signed up for asl classes but had to back out because my wife was pregnant and didn't think I needed to spend that much time away from home. She also felt that I had plenty of time and this wasn't that big of a deal. Needless to say she hasn't been too supportive or understanding about this. I have read several posts in this thread where people say that they wish that their hearing would just disappear instead of slowly fading and dragging out the process....well I completely understand and I am in the same boat. I can't help but think that if I woke up one day and my hearing was just gone then I would be given a guilt trip for wanting to get to know the deaf community.

I have recently noticed that on random days one of my ears will get the feeling like if you put you hand over it, kind of muffled and kind of echoish. I have also noticed things are more muffled and people tend to muffle more. So I made an appt for another hearing check to see how bad the Loss is. On one hand I hope it has stayed the same but on the other I hope it has dropped significantly. I also found out from my mom that when I was a baby I got a lot of ear infections.

I am going back over the info I gathered about asl and I downloaded an asl app for my iPhone so that I can learn on the go. I am glad that others understand what it is like to be in no mans land and I am not alone in my worries.
 
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