Adjustment to late onset deafness

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.
 
p2p said:
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.
Click to expand...

Here are several. There are many more.

Deaf Psychology Books - Books About the Emotional Impact and Psychology of Deafness
 
I had to have speech therapists at an earlier age, I wonder if they saw something I wasn't prepared to.
 
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.
 
sallylou said:
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.
Click to expand...

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.
 
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.
 
ms_redcat said:
KristinaB said:
Not sure if this is normal or not. Lately, hubby and I have been having problems and as I think about it so does the rest of family. It seems that since I have lost all my hearing and I have now been without it for a little over 3 years, I am not making sense when I talk (I guess :hmm:).


Do late-deafened adults generally start having significant speech changes? When I went in to look at HAs, the audiologist told me I'd eventually need speech therapy.

That never occurred to me. I'm in my mid-30s. The deaf people I know are either deaf from early childhood, or deafened much later in life (70s and up.) Before my hearing started to go, I hadn't noticed any difference in my older late-deafened relatives' voices (other than volume.)

I didn't ask the audiologist what he meant at the time. Thinking about it later, I wish I did.

So questions for other late-deafened folks out there: Have you had voice changes, and what kind? What, if anything, did you do about it?
Click to expand...


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....
Click to expand...
 
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.
 
@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!
 
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?
 
ms_redcat said:
@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!
Click to expand...

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
 
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.
 
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.
 
TXgolfer said:
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.
Click to expand...

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. :giggle:
 
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.
 
TXgolfer said:
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.
Click to expand...

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

This is what you have seen already?

North Harris College
Charles Trevino
Coordinator
Interpreter Training Program
North Harris College
2700 W.W. Thorne #A 160 C
Houston TX 77073
Charles.trevino@nhmccd.edu
281.618.5535 v
281.618.5519 tty
281.618.7103 fax

Brian Kilpatrick
ASL Professor
Communication and Language Department
North Harris College
2700 W.W. Thorne #A 160 B
Houston, Texas 77073
brian.r.kilpatrick@nhmccd.edu
281.618.5786 tty
281.618.7103 fax
Click to expand...

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