Adjustment to late onset deafness

My husband (49 y.o.) is a newbie Meniere's "victim". I don't even know how long the hearing has been out in one ear - less than a year I'm sure - and now the ENT said it will be no time at all before he needs a hearing aide in the other, and I imagine from there it could be a pretty steep change to no hearing. Compounding the hearing loss are the terrible attacks of vertigo that leave him exhausted - it must be terrible, I feel for him. He's also self-employed and we have no health insurance. Wow, is life fun right now. :) Anyway, I am totally new to the hearing-loss world, and I'm bound and determined to help him, so here I am. Is there a Meniere's group here by any chance? I see some posts peppered here & there, didn't know if there was a dedicated thread.
 
NHDeafSpouse said:
Is there a Meniere's group here by any chance? I see some posts peppered here & there, didn't know if there was a dedicated thread.
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Hello NHDeafSpouse,

I'm originally from NH so your name caught my attention. Then I read your post - I am a Meniere's victim and have lost a lot of hearing due to it. There IS a forum for Meniere's at:
MENIERES.ORG -- Coping support site for Meniere's Disease. You are not alone! I've found the Talk Message Boards to be very helpful. (although of course with ANY forum there will be some ....ah...interesting debates. Still, 99% of the people are helpful and will go out of their way to help.

Might also be worth looking into SSDI even though he was/is self-employed, you probably had to pay ALL the SS tax.

Smiles,
Holly
 
MsCDukes, try googling ASL social and your city. Most urban areas have ASL socials. If you can't find one, it would be a good idea to use P3 or Skype.
 
Ok so another question....

I can't hear my kids when they are on another floor so I have started to sit in the bathroom with my oldest when she showers, she's 7 and all about being independent so needless to say she hates it. But I am afraid I won't hear her if she falls or something... not sure what my question is but was looking for advice...
 
Kender said:
my loss is noise induced and will be progressive with no way to know how fast it will fade.
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same here, every thing sounds like I'm under water. kinda a like all the sounds are blurd together. like one long mumble.

The thing I really hate is people think I can understand them if if they turn up the volume. but, it doesn't work that way . when they talk loud all I hear is a really loud mumble.
They just can't under stand that they have to look at me when they talk.
 
I had people at church this past Sunday who commented that I didn't seem like a deaf person. I asked what they thought a deaf person should seem like. Their response was they thought all deaf people used sign language and couldn't talk. They were glad I decided to come to the church and could help educate them. They realized they had no idea and admitted that there are some people who want to come to the church, but are deaf or hoh and didn't feel comfortable. The church has stated that they will see what they can do for us and get all of the deaf and hoh back. They hope I return and keep going there as they are willing to work with me. Estimates are that if all the others return, there will be between 15-20 of us that are deaf or hoh. It's a start. Not all of us know ASL and they are going to try to get the others to come and start a deaf social so we can all learn ASL.
 
:wave:Kristina I'm happy for you that you could get Deaf social at your church.
Your wondering about what a deaf person should "seem like" is the first thing I thought of also when I read what the congregants commented. That 15-20 - that seems like a good number! Let us know how it goes:hug:
 
KristinaB said:
I had people at church this past Sunday who commented that I didn't seem like a deaf person. I asked what they thought a deaf person should seem like. Their response was they thought all deaf people used sign language and couldn't talk. They were glad I decided to come to the church and could help educate them. They realized they had no idea and admitted that there are some people who want to come to the church, but are deaf or hoh and didn't feel comfortable. The church has stated that they will see what they can do for us and get all of the deaf and hoh back. They hope I return and keep going there as they are willing to work with me. Estimates are that if all the others return, there will be between 15-20 of us that are deaf or hoh. It's a start. Not all of us know ASL and they are going to try to get the others to come and start a deaf social so we can all learn ASL.
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:thumb:
 
cool scary guy said:
same here, every thing sounds like I'm under water. kinda a like all the sounds are blurd together. like one long mumble.

The thing I really hate is people think I can understand them if if they turn up the volume. but, it doesn't work that way . when they talk loud all I hear is a really loud mumble.
They just can't under stand that they have to look at me when they talk.
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This is how my hearing was for about 2 years before it crapped out. I would tell people I couldnt hear them and they would speak louder. I was guess what? I still cant hear you!!!!!!!!!!
 
KristinaB said:
I had people at church this past Sunday who commented that I didn't seem like a deaf person. I asked what they thought a deaf person should seem like. Their response was they thought all deaf people used sign language and couldn't talk. They were glad I decided to come to the church and could help educate them. They realized they had no idea and admitted that there are some people who want to come to the church, but are deaf or hoh and didn't feel comfortable. The church has stated that they will see what they can do for us and get all of the deaf and hoh back. They hope I return and keep going there as they are willing to work with me. Estimates are that if all the others return, there will be between 15-20 of us that are deaf or hoh. It's a start. Not all of us know ASL and they are going to try to get the others to come and start a deaf social so we can all learn ASL.
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Awesome. I stopped going to church as there was only one other deaf/hoh person there and she used ASL. I still keep in touch with my minister, I will forward this idea to him. Ask him if there may be any others who would like to attend a class that uses writing instead of verbal communication
 
Hey all...just a quick update...

A week ago Friday I went down to my local HA center b/c I've been noticing that my ha's seem to be on the fritz. Yah... I'm also the type that, when my t-shirts get tight, I blame the washing machine for shrinking them...

Long story short, my audi tests the aids, then tests me -- then she runs me over to the head MD @ EENT clinic and he peeks and pokes some more before diagnosing atypical Meniere's.

Timeline:

24 months ago: Hearing normal
18 months ago: start saying "what?!?" alot - notice kids aren't blasting damn tv anymore
14 months ago: first audi test - you need bilateral ha's...
12 months ago: get my ha's...wow!
05 months ago: ha's fritzing out -- new audio test -- lost more hearing...
01 week ago: another 20% hearing lost in right hear, left ear severe but holding

Can anyone tell me what to expect, when to expect it? Dr. gave me pills to drain salt-fluids from inner ear but I think this is more of a placebo that anything else...

At least now, with the diagnosis, I know something, which is more than what I knew before. Going to start going back to sign socials - as I posted earlier, I grew-up in/around deaf community but haven't signed in about 20 years since I moved.

What I know about Meniere's is what I've self-researched on the 'net. I'm assuming that this disease is as personal as cancer but was still hoping I could get some sort of advice.

Thanks...

--mike
 
wyntr said:
Hey all...just a quick update...

A week ago Friday I went down to my local HA center b/c I've been noticing that my ha's seem to be on the fritz. Yah... I'm also the type that, when my t-shirts get tight, I blame the washing machine for shrinking them...

Long story short, my audi tests the aids, then tests me -- then she runs me over to the head MD @ EENT clinic and he peeks and pokes some more before diagnosing atypical Meniere's.

Timeline:

24 months ago: Hearing normal
18 months ago: start saying "what?!?" alot - notice kids aren't blasting damn tv anymore
14 months ago: first audi test - you need bilateral ha's...
12 months ago: get my ha's...wow!
05 months ago: ha's fritzing out -- new audio test -- lost more hearing...
01 week ago: another 20% hearing lost in right hear, left ear severe but holding

Can anyone tell me what to expect, when to expect it? Dr. gave me pills to drain salt-fluids from inner ear but I think this is more of a placebo that anything else...

At least now, with the diagnosis, I know something, which is more than what I knew before. Going to start going back to sign socials - as I posted earlier, I grew-up in/around deaf community but haven't signed in about 20 years since I moved.

What I know about Meniere's is what I've self-researched on the 'net. I'm assuming that this disease is as personal as cancer but was still hoping I could get some sort of advice.

Thanks...

--mike
Click to expand...


If it makes you feel any better I did the same thing, argued with the audi that my Ha's WERE broken and he insisted no no they are fine... took a half hour of arguing until I allowed him to do another hearing test :giggle:
 
Hi Im a late deaf person I lost my hearing due to minigitis three years ago I was in plumbing school with one year left out of five to go when minigitis hit me I was in the hospital for 2 1/ 2 months behind minigitis I lost my job as a plumber and wasted four years of school now Im on ssi looking for work and tring to enroll in college for ASL 1 its hard for me not being able to hear my kids voices and my grandson talking to me and my girlfriend she just keep talking to me like I can still hear its very frustrating.
 
blank canvas said:
Ok so another question....

I can't hear my kids when they are on another floor so I have started to sit in the bathroom with my oldest when she showers, she's 7 and all about being independent so needless to say she hates it. But I am afraid I won't hear her if she falls or something... not sure what my question is but was looking for advice...
Click to expand...

As someone who grew up with deafness, I developed an instinct of how long my daughter takes her showers. Automatically, I knock on the door and open it to check on her ever 5 mins.
 
wyntr said:
Hey all...just a quick update...

A week ago Friday I went down to my local HA center b/c I've been noticing that my ha's seem to be on the fritz. Yah... I'm also the type that, when my t-shirts get tight, I blame the washing machine for shrinking them...

Long story short, my audi tests the aids, then tests me -- then she runs me over to the head MD @ EENT clinic and he peeks and pokes some more before diagnosing atypical Meniere's.

Timeline:

24 months ago: Hearing normal
18 months ago: start saying "what?!?" alot - notice kids aren't blasting damn tv anymore
14 months ago: first audi test - you need bilateral ha's...
12 months ago: get my ha's...wow!
05 months ago: ha's fritzing out -- new audio test -- lost more hearing...
01 week ago: another 20% hearing lost in right hear, left ear severe but holding

Can anyone tell me what to expect, when to expect it? Dr. gave me pills to drain salt-fluids from inner ear but I think this is more of a placebo that anything else...

At least now, with the diagnosis, I know something, which is more than what I knew before. Going to start going back to sign socials - as I posted earlier, I grew-up in/around deaf community but haven't signed in about 20 years since I moved.

What I know about Meniere's is what I've self-researched on the 'net. I'm assuming that this disease is as personal as cancer but was still hoping I could get some sort of advice.

Thanks...

--mike
Click to expand...

There are a good number of people on this board who have Meniere's. Hopefully some will come in to read your post, but you can also scroll back to the beginning of this thread because some may have already posted in here. I hope you're able to find some information that helps you -- especially from those here on this board because they write from their personal experiences.
 
Ended up not going back to the church. We got a letter from the church deacons asking that I not return as I was deaf and could not participate. My mother was ashamed of the church and we will look elsewhere.
 
You're kidding me! :jaw:

Hope that you find a better place soon. :wave:
 
KristinaB said:
Ended up not going back to the church. We got a letter from the church deacons asking that I not return as I was deaf and could not participate. My mother was ashamed of the church and we will look elsewhere.
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:jaw: :jaw:

Their loss not yours. Hope you find a church accepting of you for who you are inside.

What would they do if you went to the church anyway. Have their bouncers carry you out? :eek3:
 
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