Adjustment to late onset deafness

needsleep said:
Slowly learning to ask for what I need. It seems so stupid to me sitting here at home that I have problems asking for things like CC to be turned on. Why should I feel bad about things like that? I shouldn't!

For example, Boyfriend and I were sitting on his couch watching "Kitchen Nightmares" and I kept asking him what the people were saying so he told me to turn CC on. I did, and I was much happier for it...until his family came home. Then I felt bad because I know it annoys one of his brothers. I asked him if we should turn them off and he just made a face and told me not to worry about it. It's almost like I'd rather sacrifice my own needs for the comfort of others. I really need to learn to cut that crap out!

Knowing is half the battle, right? *sigh* I'll grow a backbone eventually. In the meantime, I'm glad he has enough backbone to cover me when I need it.
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With or without CC, it works for hearing people but for us, we NEED the CC so to me it overrides how they feel about it. All my TVs have permanent CC on. I broke up with my hearing ex and when I went to visit, I was surprised to see his TVs having CC on. I found out some hearing people like it regardless because sometimes they miss what they said or not understand it. It helps them as well.
 
KLEE17 said:
My late deafness is caused due to complications of VHL. I wasn't aware of it and wasn't keeping it in check through the years. It sucks, but I've finally come to terms with it and have a positive outlook. Anyone heard of VHL?
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Well, I had never heard of it until I read your post. I googled it and find it eerily similar to NF2, but a little less common. I'm glad you have a positive attitude and outlook to the future. Interestingly, I read that only 10% with VHL go deaf. Your right, it must suck to be in that 10%. I have NF2 and have had one acoustic neuroma removed on the left side (which left only about 5-10% hearing/distorted) and still have one that I'll probably need removed this year on the right side. It's still a pretty small tumour, but for some reason, last August, I went totally deaf on that side. They figured that even though it was small, it must have damaged the nerve. Like you, I've had to have a positive attitude. Really, what can you do? I'm learning sign language with my friends and husband and trying to learn to read lips. It's a tough adjustment since I lived 57 years in the hearing world. There is no deaf community in our little town so it's a bit different than the deaf in cities. Keep up the positive attitude and keep us informed on your progress.
 
reeny said:
Well, I had never heard of it until I read your post. I googled it and find it eerily similar to NF2, but a little less common. I'm glad you have a positive attitude and outlook to the future. Interestingly, I read that only 10% with VHL go deaf. Your right, it must suck to be in that 10%. I have NF2 and have had one acoustic neuroma removed on the left side (which left only about 5-10% hearing/distorted) and still have one that I'll probably need removed this year on the right side. It's still a pretty small tumour, but for some reason, last August, I went totally deaf on that side. They figured that even though it was small, it must have damaged the nerve. Like you, I've had to have a positive attitude. Really, what can you do? I'm learning sign language with my friends and husband and trying to learn to read lips. It's a tough adjustment since I lived 57 years in the hearing world. There is no deaf community in our little town so it's a bit different than the deaf in cities. Keep up the positive attitude and keep us informed on your progress.
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I've seen people with NF2, but never knew the name for it until now. I read about it and noticed the similarities as well. I've had to sac tumors removed from both ears. I also have one behind my left eye, but it's not growing so we've (my doctors and I) decided to leave it alone for now. It has been a long road of understanding, but I'm thankful to still be in this world. Thank you for sharing your story. I'd definitely like to continue to share updates.
 
Eater of Worlds said:
Your bf is right. Who cares if a family member doesn't like the CC? My husband never watched shows without CC before me, and now he feels weird watching shows without CC even if I'm not around. What people consider normal can change. Heck, he got very used to not talking without facing me, and he starting doing that to his friends. They'd get together to game, they'd be chitchatting and he'd fall silent. They'd then look at him and say "You know, we can hear if we don't look at you".

So definitely don't worry about something as inconsequential as CC bothering a hearing person belonging to the family of your bf. They will suck it up and get used to it.
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That's my experience with my family. My kids say they now prefer to watch with CC on even if I'm not there watching the TV
 
Bottesini said:
. . . other senses should compensate.
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OMG!!! Please tell me this temporary. I noticed other smells yesterday, chemically related, but didn't think anything of it because I know things are changing. I did not expect today . . . I could smell the body odors of half the people around me. Wanted to gag at a couple of them. Is this just a rare occasion thing or can I expect a lot more of it? Thanks,
 
Chris87 said:
OMG!!! Please tell me this temporary. I noticed other smells yesterday, chemically related, but didn't think anything of it because I know things are changing. I did not expect today . . . I could smell the body odors of half the people around me. Wanted to gag at a couple of them. Is this just a rare occasion thing or can I expect a lot more of it? Thanks,
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You know what? I have an extremely heightened sense of smell, but I have no idea if this is common to other deaf people.

I had this all my life.
 
I'm deaf, but my sense of smell is a bit below average


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Bottesini said:
You know what? I have an extremely heightened sense of smell, but I have no idea if this is common to other deaf people.

I had this all my life.
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Me too! I had really good eyesight until it started going out, too. My sense of smell has always been really good.
 
Trying to get into therapy hoping it will help me out, I'm still struggling with depression and anxiety.
 
ladysolitary85 said:
Trying to get into therapy hoping it will help me out, I'm still struggling with depression and anxiety.
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I hope you are successful in finding a good therapist. Speaking from personal experience, a good psychotherapist can be really helpful. But a bad one sucks.



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Bottesini said:
You know what? I have an extremely heightened sense of smell, but I have no idea if this is common to other deaf people.

I had this all my life.
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i chasing a smell in my house at the moment it awful but no one else smell it..i have had heightened sense aswel but i not sure if i had it before deaf....i will be right if i can smell it then something is causing it
 
AJWSmith said:
I hope you are successful in finding a good therapist. Speaking from personal experience, a good psychotherapist can be really helpful. But a bad one sucks.



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They suggested group therapy first... *face palm* Well, that lasted for 2 days, back to individual therapy lol
 
I dealt with it okay, I guess...it happened gradually and I didn't realize it was as bad as it was until I was in my 20s...it actually was a bit of a confidence boost for me, since I went through all of college with a moderate hearing loss without any help whatsoever...
 
I'm dealing with not fitting in anywhere. I joined the site and lurked but felt like I didn't fit cause some days I can hear. This winter the days I hear "well" have diminished to the point that I feel alone. I have tried to explain over and over to my family, but I get dismissed and ignored or told I'm not trying hard enough. It wasn't till a few moments that we all realized how bad it has gotten. I almost stepped in front of a vehicle, I can't hear my daughters anymore, I completely missed my son screaming in pain when he slid into the butcher block while my back was turned, I can't get names right and conversations are all static. I don't know what to do, the only one who doesn't ignore me or treat me like an idiot is my dog. I started training her to be my hearing dog after finding out she can do for me in public what she does for me at home. I am tired of the screwdriver stabbing me constantly and tired of dr's just shrugging and telling me learn to deal with it. I am probably not making a lot of sense cause right now I'm just struggling to deal with the loss as it is, but this infection I have is causing the longest period of silence so far and I feel kinda nuts.
 
So I had a recent MRI and found out a possible cause to my hearing loss as a child was encephalitis (had a fever of 104.4 and lost complete hearing on my right, then some on my left) but my hearing is degrading due to nerve issues they can't fix and now I can't even listen to classical music without getting frustrated (I can't tell from what instrument is what) and music has always been a big part of my life and therapy and now I feel defeated because I can't enjoy it the same way. Hearing friends don't understand, one even asked me what the difference is between a deaf, blind and mute person so.

I'm sorry if I'm whining, I just feel very defeated, depressed and hopeless, I avoid social situations my anxiety is in high gear. Also have PTSD which doesn't help any.

I just, feel alone.
 
New member

Hello all, I would like to introduce myself. My name is Dave at 46 yrs old. I would imagine I would be considered a late bloomer, however I am not so sure about that.

I have never hear a door bell, birds chirp or Fire alarm go off or countless other noises. I use the word noise because all those sounds sound like static to me.

I was 35 when I discovered how bad my hearing was. That was also the first time I had a real audio gram done, I was classified as profound. The examiner asked why I waited so long to have the test, I replied I didn't know what I was missing.

Of course I was now in the hunt for HAs. I soon learned it was like buying a used car. My first set got used for about two months then sat in the drawer for two years. I hated all these new sounds and I had no clue what most of them were (noise).

I eventually got a decent set from Siemens. Although I was able to discern many new sounds I had a lot to learn. I still can not hear birds or fire alarms but I can sure hear my lovely wife yell at me (hmmm and I paid to hear this) j/k dear.

Well I am going to be in the market for a new set of aids soon. Me being me I need lots of information before I get scammed by my used car salesman oops I mean HA specialist.

One question I have is .... Why am I able to hear the television perfectly (I think) with head phones on but not with the aids. I can understand almost everythng that is said even with the music playing in the background.

Any thoughts, comments or even the craziest ideas are welcomed and encouraged.

My favorite saying " It's not up to me to hear you, it's up to you to make sure I hear you" I think I invented that, If not thanks to the originator.
 
dthomas said:
Well I am going to be in the market for a new set of aids soon. Me being me I need lots of information before I get scammed by my used car salesman oops I mean HA specialist.
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It might sound weird but I chose to get a Costco membership to avoid a sales pitch environment. The dispenser at my location is nice and takes his time. I follow up regularly with a otologist and audiologist in the hospital to track my care.
 
dthomas said:
Hello all, I would like to introduce myself. My name is Dave at 46 yrs old. I would imagine I would be considered a late bloomer, however I am not so sure about that.

I have never hear a door bell, birds chirp or Fire alarm go off or countless other noises. I use the word noise because all those sounds sound like static to me.

I was 35 when I discovered how bad my hearing was. That was also the first time I had a real audio gram done, I was classified as profound. The examiner asked why I waited so long to have the test, I replied I didn't know what I was missing.

Of course I was now in the hunt for HAs. I soon learned it was like buying a used car. My first set got used for about two months then sat in the drawer for two years. I hated all these new sounds and I had no clue what most of them were (noise).

I eventually got a decent set from Siemens. Although I was able to discern many new sounds I had a lot to learn. I still can not hear birds or fire alarms but I can sure hear my lovely wife yell at me (hmmm and I paid to hear this) j/k dear.

Well I am going to be in the market for a new set of aids soon. Me being me I need lots of information before I get scammed by my used car salesman oops I mean HA specialist.

One question I have is .... Why am I able to hear the television perfectly (I think) with head phones on but not with the aids. I can understand almost everythng that is said even with the music playing in the background.

Any thoughts, comments or even the craziest ideas are welcomed and encouraged.

My favorite saying " It's not up to me to hear you, it's up to you to make sure I hear you" I think I invented that, If not thanks to the originator.
Click to expand...

I can hear the TV better with the TV Dex (bluetooth enabled device from Widex), better than I can without it. I can't speak to the headphones but the bluetooth comes through the aids themselves to the ear drum so I hear better than I do with that device than just the HAs alone.
 
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