New to HoH life

MDFighter

New Member
Hi all, I'm new to being HoH and am trying to find people around my age bracket (21-31) who are living through the same kinds of things I am. I'm the only person in my family (extended family included) that has any kind of hearing loss, let alone being HoH, and potentially Deaf in the next 5-10 years.
I have Ménière's Disease and have been symptomatic for a little over a year. I've lost my hearing in the past year and a half, and it's really been a life adjustment for me. Struggling with day to day life has been really frustrating and I don't have any family or friends who actually understand what it's like going for being perfectly healthy with normal hearing to being sick and going Deaf. I have a high powered hearing aid for one ear and am saving up to get the same for my other one. I also took 2 ASL college courses and am continuing teaching myself. I'm slow, but can usually hold a conversation decently..
I'm really hoping that I can meet some people on here that are HoH or Deaf who can give me some advice on maneuvering through what feels like a Hearing dominated world now.
Thanks..
 

VacationGuy234

Active Member
Welcome. I'm sorry you are going through this.

I don't know your location, but there are groups such as Hearing Loss Association of America and others you can look into.

I wouldn't hold onto those numbers too hard. You never know how long your hearing will last. And, technology is getting better with every passing year.

It's a tough transition, but you will be OK.
 

Otherwise

Member
I am 23 from Michigan. Around three or four years old I started suffering from menier's, although it wasn't diagnosed untill much later. My attacks went away by six years old but I had pretty bad hearing loss causing me to develop an accent (which did not serve me well through school.) About 4 years ago, my menier's symptoms returned and became steadily worse over time. My local doctor eventually found out about menier's and sent me to an ENT who reffered me to UofM (University of Michigan) hospital where they have done basically nothing to improve my condition. December of last year is the last time I heard a sound with hearing aids, so I stopped wearing them. I won't get into specifics but I've had some bad times this last year with losing my job and having bad medical experiences and a less than understanding family. I was looking online for related stuff and found alldeaf.com. So, long story short, hello everybody.
My intro from a while back.


________________________________________________________

So I know everybody has got to get sick of me posting this, but it never gets any less true. Living with hearing loss isn't a problem. learning HOW to live with hearing loss is the problem. I still have issues here and there with people who are . . . impatient (or maybe ignorant would be a better word.) Overall I would say losing your hearing isn't all it is cracked up to be in terms of things to be afraid of. Especially if you have Meniere's and have really bad attacks, I would worry about that more. My attacks are about every other day and last anywhere from 4 - 14 hours long (results not typical.) The average person with Meniere's has half-hour to two hour attacks - or so I've been told.

As to your request about advice for dealing with a "hearing dominated world," I would say, in my case, most things were easy enough to adjust to. It wasn't ridiculously hard to find solutions to most of the problems I was dealing with. My main problem, and one I still struggle with, is other people. Some people just don't want to work with me and take the extra two seconds to write something down on a piece of paper or say something again while looking at me so I can see their face. People frustrate me. The only real solution for people is . . . people. You have to have a group of friends/family who know what your feelings are and what you might need from them. I would start including people you trust and telling them sort of where you are at emotionally/mentally if and before you lose your hearing completely because it will take a HUGE weight off of your shoulders should that day come. I got lucky to have really awesome friends that I really didn't trust as much as I should have before because they are super awesome and much cooler than I would expect early tween guys to be.

I don't know if what I am saying is of any help or if I am in scrambling rambling mode as I am fresh off a Meniere's episode, but I hope you won't spend the next few years anxious or worried. Many Meniere's sufferers can manage their symptoms well.
 

deafdyke

Well-Known Member
Welcome. I'm sorry you are going through this.

I don't know your location, but there are groups such as Hearing Loss Association of America and others you can look into.

I wouldn't hold onto those numbers too hard. You never know how long your hearing will last. And, technology is getting better with every passing year.

It's a tough transition, but you will be OK.

Eeeehhh, HLAA tries hard but their approach leaves something to be desired. They CAN be good for a particular demographic, but their sole focus is basicly Hearing Health 101, and late deafened people.......I wish there was a HLAA for younger people, with a good mix of hearing health 101 (most Deafies wear aids and CIs after all) and Deaf cultural stuff.
 

deafdyke

Well-Known Member
MD Fighter, are you still in college? Maybe you could spend a semester at NTID or Gally to get immersed into ASL! That would be a part of the puzzle!
 

VacationGuy234

Active Member
Eeeehhh, HLAA tries hard but their approach leaves something to be desired. They CAN be good for a particular demographic, but their sole focus is basicly Hearing Health 101, and late deafened people.......I wish there was a HLAA for younger people, with a good mix of hearing health 101 (most Deafies wear aids and CIs after all) and Deaf cultural stuff.


The problem with getting young people involved is they are not at the point were they feel the need for a new group. As you stated, most of the crowd is late deafened so, by definition, it is going to be older people. We do have younger people in my group, but not as many as I would like.

In addition, younger people usually want to go to bars which is hard to setup for group meetings. Regular bars usually have loud music and local bars usually need reservations for large groups.

They do push the Hearing Health stuff, but they have to because the group is sponsored by hearing equipment companies.

On the other hand, if you went to an ASL group meet more than half of the people are would-be interpreters, groupies, CODA or adults of deaf children.

Sadly, it's easier to get connected over the internet than in real life.
 

LoveBlue

Well-Known Member
Eeeehhh, HLAA tries hard but their approach leaves something to be desired. They CAN be good for a particular demographic, but their sole focus is basicly Hearing Health 101, and late deafened people.......I wish there was a HLAA for younger people, with a good mix of hearing health 101 (most Deafies wear aids and CIs after all) and Deaf cultural stuff.

DD you're so full of it. Here you bash HLAA and then on HLAA you bash AD. Didn't you refer to AD as AllDumb one time?
there was a guy on the Alldumb messageboards years ago, who was OBESSED
:roll:

And HLAA does have events, etc for young adults:

http://hearingloss.org/content/young-adults-0
 

deafdyke

Well-Known Member
DD you're so full of it. Here you bash HLAA and then on HLAA you bash AD. Didn't you refer to AD as AllDumb one time?
:roll:

And HLAA does have events, etc for young adults:

http://hearingloss.org/content/young-adults-0

Ooooo.... so you take it personally. ALL I said is that it's very much late deafened people, AND it's hearing health 101. Why is that offensive?!?! You see the same things with a visually impaired older person's support group vs one for young/always been blind/low vision. That's b/c most B/LV people are late blinded and it's more of a vision health 101 focus.
Yes, you do have events for young adults....but again they're pretty sparse and most of your young adult members tend to be deafened as teens/young adults... That population tends to be more interested in Hearing Health 101 stuff, as they are pretty much ex hearing, and did not grow up dhh....
 

deafdyke

Well-Known Member
What's the most popular platform out there? BTW, are you involved in the Boston HLAA? Went to a meeting.....meh. I know some people from there.
 

cjbarry92

New Member
Hi MDFighter, I literally just joined the threads myself :) I am glad to have joined this forum for support and the first thread I see is someone going through the exact same situation I am! I have recently been diagnosed with Ménière's Disease, however I have been suffering symptoms since I was around 13-14 (I am now 22). After a long time of fluctuating hearing for me, but being able to cope, when I was diagnosed, I have found out that I am now at the stage where I need to start using hearing aids.
Probably the best advice I can provide in helping you navigate through a hearing dominated world, is advice I can offer in regards to the workforce. I work fulltime in IT and have been functioning without hearing aids far longer than I should have been (I honestly think I should have got myself tested a year ago at least). I have been able to thrive however because my job is being at a computer all day and most communication in the company I work for is done through email and instant messaging. I think it is a lot better to be HoH or deaf now then at any other point in history because of all of the technology we have available these days. Not only are there now many desk jobs out there that don't require constant face-to-face communication, technologies such as text-based communication or the quality of hearing aids and improvements in cochlear implants I believe have made jobs more reliant on communication more possible than ever for people in our situation as well :)
When I first found out how I am going progressively deaf I was worried about how it was going to affect my future and how I may not be able to climb as high up the career ladder as I would have wanted, and I got depressed about it. However, after analysing things so far, I can now see how it has not impacted me at all, and I am confident that being HoH or deaf does not need to affect anybodies working future at all, as their now seems to be ways around any challenge! I hope this helps in some way :)
 

meeganb

New Member
Hi all, I'm new to being HoH and am trying to find people around my age bracket (21-31) who are living through the same kinds of things I am. I'm the only person in my family (extended family included) that has any kind of hearing loss, let alone being HoH, and potentially Deaf in the next 5-10 years.
I have Ménière's Disease and have been symptomatic for a little over a year. I've lost my hearing in the past year and a half, and it's really been a life adjustment for me. Struggling with day to day life has been really frustrating and I don't have any family or friends who actually understand what it's like going for being perfectly healthy with normal hearing to being sick and going Deaf. I have a high powered hearing aid for one ear and am saving up to get the same for my other one. I also took 2 ASL college courses and am continuing teaching myself. I'm slow, but can usually hold a conversation decently..
I'm really hoping that I can meet some people on here that are HoH or Deaf who can give me some advice on maneuvering through what feels like a Hearing dominated world now.
Thanks..


Hi MD fighter!
I'm also new to being HOH. I'm 26 and was diagnosed 6 months ago!! I'm also looking to make new friends who are HoH! I am also the only person in my extended family that has any kind of hearing loss!
That's great you have taken some asl courses already!! I'm hoping to take one soon as they offer a class near me!

If you're wanting to chat more your more than welcome to message me

Meegan
 

glickchick

Member
I am relatively new to this too - I became completely deaf following a car accident about 3.5 yrs ago, when I was 19. It definitely isn't easy, but it's manageable and I have definitely learned to adapt. It's great that you're learning ASL... I lagged a bit with this (partially because I didn't want to admit that I was deaf now, to be honest), and I wish I had learned sooner. I am still taking classes now, but really rely mostly on lipreading and texting/writing things down to communicate.

Happy to chat more!

-Lauren
 

MDFighter

New Member
I am relatively new to this too - I became completely deaf following a car accident about 3.5 yrs ago, when I was 19. It definitely isn't easy, but it's manageable and I have definitely learned to adapt. It's great that you're learning ASL... I lagged a bit with this (partially because I didn't want to admit that I was deaf now, to be honest), and I wish I had learned sooner. I am still taking classes now, but really rely mostly on lipreading and texting/writing things down to communicate.

Happy to chat more!

-Lauren


How did you learn to lip read so quickly? I'm desperately trying to learn while I can still hear but it isn't going well. I'd love some tips from you about that
 

glickchick

Member
I was forced to learn quickly just based out of necessity. You're really smart for trying to learn while you still have some hearing. One of the things I did initially was to load up some videos on YouTube of things I knew the words to - Just so that I could get a feel for how the words that I know look on the mouth. I found that understanding how vowels look is the crucial step; reading the consonants is a little easier. You definitely need to focus a lot, and it will be hard (it still is for me!), but watching TV with the volume off (if you can still here) and watching things you know will be a great start.
 
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