p2p

Recently (last few months) study group members have commented that my speech volume is excessive. That's my cue to get into my audiologist to get my aids re-programmed. Hate this feeling...this recent progression has been significant. These reality checks used to be less frequent. Seems like my hearing loss has progressed at such a rate, it's very unsettling.

Funny how I thought I understood what was happening to me and the next thing I know, I'm fighting back tears of embarrassment and fear. Having my aids re-programmed helps a lot, but it's impossible to deny the fact that I'm that much closer to being deaf.

Someone should write a "How-to" book on how to be deaf. Would make my life much easier...

p.

Deafness

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Bottesini

Here are several. There are many more.

Deaf Psychology Books - Books About the Emotional Impact and Psychology of Deafness

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Seagirl

I had to have speech therapists at an earlier age, I wonder if they saw something I wasn't prepared to.

sallylou

p2p, I have progressive hearing loss, too. How often do you get an audiogram? It's been about 2-3 years since my last audiogram. I'm wondering if it's time to get another one. I feel like my HAs need to be reprogrammed.

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KristinaB

When I had HAs I was told to get an audiogram done every 6 months to a year. I guess mine was progressing real bad.

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Taking life one day at a time.

sallylou

Yes, it's probably time. I'm procrastinating. I have no idea how fast the hearing loss will take in my case. I have mixed feelings about it.

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TXgolfer

[quote=ms_redcat;1473446]
I haven't lost any speaking ability.....However I guess my voice is changing. I am a native Texan but no one that hears me now believes that. Most ask if I am from up north. Someone even asked if I was from England....

TXgolfer

This is a great thread. Glad I finally had time to read through it.

Here is my story.

It started about 20 years ago when I was 21 or 22. I was in my office and all of the sudden everything started spinning. I started feeling sick so I tried to make my way to the bathroom. I couldn't walk....I had to crawl to the bathroom. I got very sick in the bathroom and about an hour later my wife (the most beautiful woman I have ever seen....sorry for going off topic) arrived. She helped me to the car and we went to the ER. By the time I got there I felt better except for being completely drained. The Dr's wrote it off as fatigue or possibly dehydration. That fit as a possibility. At the time I was playing golf professionally. I was travelling a bunch playing in small events just trying to get started. My weeks off were spent working at my grandfathers company during the day and practicing golf at night and on weekends. I also noticed that my right ear felt stuffy or clogged during this period. I tried some over the counter wax removal meds thinking that was the problem......It wasn't. After a few more trips to the ER after spinning episodes (I would later know them as vertigo attacks) I was referred to an ENT. There was an Audiologist in his office and she gave me a hearing test. She came out of her booth in tears......not a good sign (nor professional....lol). The Dr told me he believed I had Menieres but he would have to do more tests. 20 years ago Menieres was believed to be something that affected people later in life. He sent me to another specialist in Dallas and his tests confirmed Menieres. He prescribed diuretics, antivert for dizziness and a low salt diet. Every thing was better....the attacks were gone and my hearing was pretty good. Only my right ear was effected and I was back to chasing golf.

About a year later the attacks started again. They were much more violent this time. With the attacks came hearing loss. The loss would be pretty bad but then I would regain most of the hearing. There didn't seem to be any pattern. I would have attacks three days in a row, then have a good week. Then maybe have attacks every other day for a week. After a few months My Dr suggested the shunt surgery. I had it and it worked. I was back on the golf course. My relationship with my family was becoming strained though. My parents were sponsoring my golf and it seemed each time things started going well the attacks would start. And I started missing days of work at my grandfather's company which didn't sit well with him. My caddy was my best friend and when I couldn't play he couldn't work. Because of the randomness of the attacks and the fluctuating hearing loss many in my family began to think that I was faking and just not motivated like I should be. Part of their belief came from the fact that at that time Meniere's didn't affect people my age. Or so the Dr's thought. I eventually lost all contact with my family.....except my wife.....who was now pregnant.

About a year after the shunt surgery the attacks returned. This time the Dr suggested two options. A nerve section.....which to me at the time sounded very dangerous. Or a labrynthectomy. He assured me that with the lab surgery vertigo would be a thing of the past. It was a good option considering I had perfect hearing in my left ear. It would allow me to continue my pursuit. I was also assured that since I had suffered from Menieres for over 2 years without it effecting my left ear I was in the clear. I had the lab surgery and after a long recovery period I was fine. Deaf in one ear but fine otherwise.........for about a year. A year later I was diagnosed with Menieres in my left ear. I was told that ethics wouldn't allow them to operate on this ear because I was already deaf in my other ear. Luckily vertigo attacks were rare and my hearing loss was slow. At this point I gave up golf and opened a home restoration business. I felt better about owning my business than working for someone else because then dealing with my hearing loss was on my terms and not theirs. My business was to go into houses that had been damaged by fire or flood and rebuild them. I did alot of work in New Orleans after Katrina. The work was rewarding and thereputic. At a time where I might have been tempted to feel sorry for myself it was impossible. Each day was spent seeing the devastation that others were dealing with. It was uplifting knowing that I could make these peoples lives better.

About 7 years ago (three years before Katrina) I lost my wife. I was reunited with my parents at that time and they were very helpful with my daughter. That is when my hearing started a more rapid decline.....I guess I was too busy to realize that I would ever be completely deaf. Well it happened about a year ago. I can still hear some sounds with the help of a hearing aid but not much. My new audiologist doubts that it was Menieres. She believes that I may have had fistulas that were not detected at the time. I'll never know for sure though

It's been tough. I feel for everyone here that is going through this. People seem to think if you say something is tough you are feeling sorry for yourself. I don't. I am having a great life. I feel blessed that I live in a time where there is so much technology to help me communicate. I regret that I didn't learn sign language sooner. But that's my only regret. Transitioning into the deaf community has been difficult. But hopefully as I learn to sign it will become easier. I will be playing for a deaf softball team this spring and playing in a deaf golf tournament in Scotland in July. So I guess I better learn quickly.

Good luck to all that are going through this.

ms_redcat

@TXgolfer Why does your new audi think it wasn't Meniere's? And how could you tell it was starting on the left too?

I'm asking because
A. In NY you can't get HAs directly from your ENT or anyone employed by your ENT. I told the audi I went to for my HAs I'd been diagnosed with Meniere's. He was surprised -- I have a high frequency loss, and apparently Meniere's doesn't usually start that way. Between that and the sound sensitivity problem, he suspects it's something else. I didn't recognize any of the medical conditions he mentioned. But when I described what a bad day feels like, he said the physical symptoms do sound like Meniere's.

B. my left ear (the good one) has started acting up -- the umbrella-opening-inside-my-ear sensation, woosh-fwump sound then things getting muffled, certain sounds hurting, and so forth, in the last month. It seems to lift though -- the right ear doesn't. The right ear has bad ear days on top of the just-general it doesn't work correctly anymore.

So it's back to the endocrinologist to check the thyroid again, then to the neurotologist!

ms_redcat

Huh. I'm really noticing how, well, medical this thread is compared to the rest of the boards!

It seems like whenever I meet another HOH in adulthood or late-deafened person, we ask each other the medical stuff right away. Then we talk about that in great detail. The Deaf people I know don't seem to ask much about that (I have no idea why my aunt's friends are deaf, or most of my teachers. It seems like -- guessing here! -- it's not a forbidden topic, it's just not relevant/interesting in everyday life?)

Honestly, right now the medical stuff is VERY relevant to me -- I used to be an active, athletic person, and now it's sometimes just exhausting to stand up.

Would we like to start a separate medical/health thread?

TXgolfer

The first hearing loss I noticed each time was in the lows....I think that is why they jumped to Menieres. My understanding is that usually Menieres starts with low frequency loss. My new audi says that Menieres is commonly misdiagnosed though.

My new audi believes mine was a perilymph fistula. Some of the causes (although rare) are flying on airplanes which I did weekly and weightlifting which I did daily. She believes that it was a fistula because the hearing declined so slowly and nothing else seemed to fit the Menieres profile. Plus every treatment they tried for the Menieres failed.

I noticed the second ear was going bad when I started having vertigo after the second surgery. That is another reason she is skeptical about Menieres. Most people notice the hearing loss before the vertigo hits when they have it.

If you haven't had an MRI yet you should. There are little tumors (not cancer)....I forget the name....that can cause the same symptoms. And fistulas can be seen on an MRI as well.

Good Luck

KristinaB

I am finding that I am a more hands on learner and that is why I am having such a problem with teaching myself sign and remembering them. I just tried to watch a video that I got from DCMP.org :: Home that is a Sign Language Video Course, but either my mother kept walking in front of the TV, or my son kept asking me questions about the netbook and internet, or whatever.

Even my daughter keeps interupting me while I am here on AD. This is why I have a problem learing ASL and I will be glad when classes start.

Today I am just feeling sorry for myself and having a hard time adjusting. Everytime I think I am doing fine, something happens and I fall into a "blue funk". My mother still does not get my attention before talking to me and just rattles on, forgetting that I can't hear her.

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Taking life one day at a time.

TXgolfer

It's a tough adjustment for sure.

When I am feeling down I try to focus on things I can still do. I also try to set goals doing those things. Not sure it will work for everyone but it works for me.

Also when I am trying to learn or study something I turn off my cell so that I can focus. I know it is harder with kids though. Maybe you could set aside a time in the day when everyone has to study something.

KristinaB

You'd think I could since I am a home schooling mother. My kids do their schoolwork each day, but with a special needs daughter and a very "needy" son I have to be there with them or he will not do the work and she will not understand.

I know things will be better when I start the classes. They will be at night and the family will have to do without me. Son is going with me so I will have someone to practice with at home. I also hope to have a few of my AD friends that will be able to help over the video phone.

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Taking life one day at a time.

TXgolfer

I am having a lady from church tutor me after the first of the year. Looking forward to it. I don't have a VP yet. I have to start looking into some of that stuff.

KristinaB

If you have a webcam, the P3 from www.hovrs.com is really great. It's totally free. Nathan helped me get that.

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Taking life one day at a time.

TXgolfer

I do have a webcam.....never tried it tho. I will check that out. Thx

sallylou

I was shocked with how few resources to learn ASL exist in the 4th largest city in the nation. I thought that I could go to the local community college in my neighborhood. Turns out that ASL classes are only available in two places which are both far away from my house. I'm going to have to get more creative to learn.

Flexibilty and creative problem solving are the answers.

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lovezebras

wow I wish I only had to go to the audi every year or even 6 months...i have to go to the audi every 1-3 months lol and the ENT 1-2 times a year unless my audi makes me go which happens often since my hearing loss is progressive and unknown as to why

Bottesini

This is what you have seen already?

http://www.***********.com/html/sign_language.html

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Bottesini

www.deafactioncentertexas.org/contact.htm

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sallylou

I've came to appreciate flexibilty as I've watched the previous generation age. Lots of issues and adjustments. Attitude is everything.

The first location is really far from my home. At least an hour of freeway driving one way. I live in the city and this location is another town in the neighboring county. The metro Houston area is about 10,000 square miles which includes 10 counties. How crazy is that! Houstonians never learned to build up, just out! Talk about urban sprawl.

The second link is for classes in Dallas. Looks like a great organization!

I'm not discouraged. I'll figure out something. I've been told that the deaf school offers classes in the summer but I'm not sure in what city.

If you find any other info, please send it my way. I'm going to ask around and contact some county sources. There is a deaf church near my home but they don't offer classes. I'm sure that I can find people to practice with there, though.

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souggy

Got a webcam?

If jclarke and an exchange student I taught can learn ASL within a year without formal classes... I am sure someone can help you over the Internet.

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"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman

KristinaB

I am hoping I can get some others besides LDNanna to help me while on P3 call with my webcam. I am also thinking about making a video or two to post here and get comments.

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Taking life one day at a time.

sallylou

I have a webcam and I'd love to learn with anyone who wants to practice.

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souggy

Awesome. Decent quality?

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"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman

FxAvatar

Hum, that is where my loss is too, it is subtle, -10ish tell about 8k, then it goes up to normal hearing. So everything but the annoying sounds are dimmed down. When I read about others loss, it always seems the other way around; they have the lower freq, but no high. I thought I was the only one that is backwards, lol.


After grilling my mother about how she started losing hers in her late 20’s, she really doesn’t know. She was told that her aunt had a bone growth that slowly closed off her ear canal, so she think s it is that, but never has checked into it. I personally have about 3 months before I can get medical coverage and my new job, so I will check into it then. Since your audiogram works close to mine (save the stronger curve), I will have them check into that perilymph fistula. Though I doubt it would be hereditary, unless it is a thin wall that is hereditary and tearing is easier or something.

Also, for those that had read about my issues with getting into a signing class to try to learn, I was able to get into a class starting January.

TXgolfer

Congrats on getting in a class.

It probably isn't the PF like you say but it never hurts to check. Could be Auto-Immune too.

Good Luck

vivid colour

Hi. Some folks pointed me here from a main forum when I introduced myself there. I guess I should probably introduce myself here before I start posting. I'll go into detail more than on the other forum. (You can skim or skip it if it's too long.)

My name is Allen. I'm 23 and late deafened.

I was born hearing and became deaf for a year when I was in kindergarten.
My mother took me to the doctor because one of my teachers thought I was autistic. I was always a strange child, so my mother was surprised and momentarily relieved to learn I was deaf. The doctor had no idea why it happened. I went through numerous ENT, ID, and audiology appointments but still no clear cause. Then all of the I sudden got my hearing back... though it took a while for everyone else to figure out because I still didn't respond when people called my name.

I've used BSL as a kid, so I took ASL in high school because and I wanted to become an interpreter. I planned to go to CSUN to take Deaf Studies with a concentration on interpreting. However, I became ill in high school. My doctor at the time couldn't figure out what was wrong but I had a lot of inflamation so she gave me a high dose of aspirin. I'd never taken asprin before so I didn't know I was allergic. I got really bad tinnitus. It eventually went away for the most part but I was left with unilaterial hearing loss. About a year later it became evident that I had been loosing my hearing slowly due to complications from Still's Disease.

I was upset at first when I was becoming deaf. Luckily, I didn't really get the chance to be depressed. A high school ASL teacher told me, "Well you sign so it's not a big deal. Plus, now you'll pay attention in class". I went to CSUN anyway for the first two year of college and took Deaf Studies-Human Services Option. I didn't really notice my hearing loss as much while I was there because most people I encountered regularly there signed or were deaf and the school was accommodating. I was actually thankful to be deaf because aside from ASL my friends taught me regular communication skills which for some reason or other I'd simply failed to learn.

I moved back to San Francisco two years ago to finish my degree (now Social Work). I don't really have any deaf friends here and most of my friends here don't sign and because I speech read and guess well they sometimes forget I'm can't hear. However, I'm working on them! I've slowly trained them to automatically walk on my left side. Hehe... but it IS training! They usually forget why they're on my left other than it seems odd to be on my right.

Recently though I found out I've lost a bit of my peripheral vision. Apparently my ocular pressure is too high and my optic nerve is thinning so I'm a high risk for becoming blind. Being deaf never was very scary to me but loosing my sight is causing me to be anxious, worried, and depressed at times. I'm an artist and also speech reading is my main way of communicating with my lazy but lovable signing impaired friends (as well as the rest of the hearing world). It's also been a bit of a hazard lately since my service dog has developed selective hearing... so she'll continue to lead me into an intersection because the signal is chirping even if she hears cars turning right from behind us.

sallylou

Welcome Vivid!

Souggy, I have no idea how good my web cam is. I have one that is built into my lap top. If it's not good enough, I'll get another one. My hubby is the computer guy around here.

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