Deafies! Hard of Hearing! Check in!

[Hawkeye-X]

I'm David, and I'm profoundly deaf, living in Colorado.

I went to mainstream school here in Denver, magnet high school, then went to NTID/RIT in Rochester, NY then moved back here, found DU after the 2000 mess.

Yeah, I'm a old-timer. :P

Hawkeye-X

[kskiska]

1. Huh? What'd you say?

Yeah, I'm an old-timer, too. Not profound, but substantial nerve deafness started in my 20s.

[Lowell]

2. This is a great Idea!

Hi HawkeyeX, I'm hard of hearing. The result of years in the Army/Navy working around dangerous equipment. I just began wearing hearing devices a few years ago after years of reading lips. Often I just remove them because of the distractions in my work area.

[Karenca]

3. Hi David

I was thrown 60 feet by a speeding car that hit me while I was standing on the sidewalk,
so,
I lost almost all my hearing in one ear
and 30% in the other ear
and I have constant buzzing
and
vertigo and a bad balance problem. (from the ear damage). And my ear feels stuffed always.

Sorry, That's alot of complaining!

[Hawkeye-X]

4. constant buzzing = tintinus (I think)

That's head noise..

Common for a lot of deaf people. You're not alone. I also have it.

[Roon]

6. I get it about once a month

It starts at a low pitch, goes high, then fades away. It's really weird.

[Karenca]

9. Mine never stops

And with the hearing loss, it makes it that much more difficult to hear
because the violins playing in my ear are quite noisy.

[Karenca]

7. Yes, it's tinnitus

Since I have it, I've always wondered what silence feels like.
I miss the quiet.

[liberalhistorian]

13. I have it, too. I have sensorineural

hearing loss, or nerve deafness, (50% in each ear) and the tinnitus started twenty years ago this summer. I'm so used to it now that I don't even think about it that much anymore, but it drove me absolutely batshit insane for the first couple of years. My hearing aids help with it a lot, though.

[1gobluedem]

36. I have balance issues too

My entire inner ear mechanism including the balance nerve had to be removed to get to the tumor that had grown on my hearing nerve and was wedged between the inner ear and the brain. The doctor told me they could save either the facial nerve or the balance nerve but not both so I opted for the facial (couldn't envision coping with springs in the eyelid, etc.). So I have one inner ear doing the job for two.

[Karenca]

41. The lack of balance/perception can be overwhelming.

But I'm glad to hear you're fine after that operation!

[Roon]

5. Hi Hawkeye

Hard of hearing since birth, wear bilateral hearing aids. I know a little sign, not enough though.

[Divernan]

8. Looking for info re new generation of hearing aids.

I have about a 50% hearing loss from an accident and really struggle with my hearing loss in many day-to-day situations, even w/ a $6,000 pair of hearing aids. My audiologist told me earlier this year that although there had been no significant improvements in hearing aids for the last 3 or 4 years, that the manufacturers' reps were promising some major improvements in the products to be unveiled at an annual gathering toward the end of April. Anyone heard (LOL) anything about this?

[Hawkeye-X]

10. Check out Phonak from Switzerland

I've had Phonaks for years. They are digital, and they adjust to my hearing loss very well.

Don't buy in the Miracle Ear bunk. OK? :)

Hawkeye-X

[indigo32]

15. I haven't heard anything about the improvements that are coming

I'm sorry your stuggling. I am very happy with my Widex digital aides. I don't do well in crowded situations (a busy restuarant) and take them out for the phone, but otherwise they are great.

[clydefrand]

31. New technology in hearing aids

I read an article in a Florida newspaper about Starkey "destiny" (nFusion) hearing aids. I computes for background noise and lets you hear people close by in a noisy background (eg. restaurants, etc.) The adjustments are automatic, so you don't need to be changing volume, etc. This is brand new technology. My hearing aid (only 1, cause other ear too far gone) just recently quit on me and I've got an appt. to check these out.
(see starkey.com)

[JLC]

34. New Technology

Hello all!

I'd like to introduce myself before I answer Divernan's question: I've been lurking DU for a long time now but this group really caught me. I thought an active discussion re: Deaf/HH topics will benefit us all - so I thought I'd join!

I'm 30 years old with congenital hearing loss. I have the classic "cookie cutter" loss pattern - moderate to severe hearing loss in low to mid-range frequencies. That means ALL people mumble when they talk! :)

To answer Divernan:

I used to wear CICs (completely-in-canal) digital hearing aids and found it very hard to get comfortable with - the sound reproduction was robotic and it was pretty useless for me in a social or noisy setting. Two weeks ago, I bought a pair of "open fit" hearing aids to replace my CICs (that broke down a year ago). They're by Oticon called "Delta." The Open Fit technology is considered to be one of the newest in the hearing aid world. And they are pretty good!

Open fits look much like behind-the-ear aids, but a lot smaller. In fact, it is as unnoticeable as the CICs. The only thing visible is the semi-transparent tube from coming from the unit behind the ear to the ear canal - one really has to look closely to see it.

However, the real break-through is that the aids still allow natural sounds to come in through the ear and at the same time amplify the weak frequencies. Note that CICs block the whole ear canal. Due to this allowance, voices sound more natural, directional perception (where the voice/sounds come from) is better, it works a lot better in noisy situations and, overall, they're just much comfortable units than CICs.

The downsides:

Open fits require you to still have good high-frequency hearing. They're expensive: 3.6K for bilaterals, but still cheaper than the 5K for the CICs.

Overall:

This unit is designed in mind to lower rejection rates for new hearing aid users. And I believe it works. They're much more comfortable and it produces amazingly natural sounds. I can wear them all day without me being bothered by them.

[Whoa_Nelly]

48. I also have inherited cookie bite hearing loss

that has increased with time. My mom went deaf over time, as did her dad.

Tinnitus plagues me constantly, but has receded some since getting aids in 2003.

With cookie bite graph levels there is significant hearing loss in the voce range. I hear high and low sounds pretty well, even some that "normal" hearing people don't hear. And there are some voices that come across much better without the aids then others, but the mojority of voices are like you said...a mumble. I have trouple hearing on the phone and use an enhanced voice level phone. And so many times, whether in person or on the phone, it's like my brain has to decode the sounds in order to make sense of the input.

Welcome to DU, JLC! :hi:

[WyLoochka]

11. May I participate if

my motivation is because my Mom is now profoundly hard of hearing? I try to help her, but I know she thinks I don't really understand. She's probably correct. She has such frustrations to deal with, I'd like to learn more about them from other people.

[Hawkeye-X]

12. Of course :)

You're more than welcome to join us!

[WyLoochka]

14. Thanks, will be checking in n/t

[tblue37]

18. Yes, of course!

Below I list links for two deaf/HoH groups on other sites. We also welcome those who have loved ones with hearing loss. I am all for networking with other deaf/HoH and those who care about them.

One of the main purposes of groups like this is support. Another is education. We want hearing people to understand, and we love hearing people who care enough to try to understand.

Please visit my I'm Listening as Hard as I Can! website. Many people give my articles to their hearing friends, families, and co-workers to help them understand what it is like for us.

Here is a link:

http://www.deafnotdumb.homestead.com/index.html

The best part about groups like this is that many HoH people are also socially isolated because of their hearing loss.

On the Internet it doesn't matter if you can't hear.

[clydefrand]

32. being with the hearing impaired

Alway look at the person you are speaking to. Don't try to talk to them if you can't see their face (eg. around a corner, in another room, etc.) Be sure you have their attention before saying what you have to say. Sometimes it takes a monent to realize that someone is talking to you and you miss the first part of conversation.

[Rhiannon12866]

44. I sympathize with you, since my mother is also very hard of hearing.

She used to get calls for hearing check-ups, from Sears, I think, which I encouraged, but she just blew them off, and they made her very angry. I became very frustrated when she kept asking me to repeat myself and I finally realized that she was reading my lips... Her own doctor finally tested her and prescribed hearing aids, but she keeps putting off getting them. She thinks that they will make her feel claustrophobic, and that they're too expensive, but I know that she can well afford them. I don't know what else I can do, except to encourage her and give the occasional reminder, to little or no avail. I just don't get it... This would help her so much.:-(

[1gobluedem]

16. I'm deaf in my left ear

Result of a brain tumor (successfully removed). I have constant tinnitus too but it only bothers me in a quiet room.

But I can't get people to quit trying to talk to me when I'm on the phone... I CAN'T HEAR YOU!

[tblue37]

17. I'm Tina.

I have had some hearing loss since childhood, but it is severe now: progressive deafness from Meniere's disease. I wear hearing aids and read lips. Deafness runs in the female line of my family. Mom and Grandma were deaf. All of Grandma's sisters and one of her brothers were deaf. I and two of my three sisters have severe hearing lass, and my daughter, age 25, has lost some hearing already in the higher and lower registers.

Just this week I finally surrendered to reality and got an amplified telephone from the Kansas agency that provides assistive technology to people with hearing loss.

I have a website entitled I'm Listening as Hard as I Can! where I comemnt on dealing with hearing loss in a society where deaf/HoH people are treated rudely rather than with compassion or consideration:

http://www.deafnotdumb.homestead.com/index.html

Most of my articles are humorous, but a few are not.

I also host a deafness/hearing loss group on Yahoo Groups

http://health.groups.yahoo.com/group/deafnessandhearingloss/

and I and my even deafer younger sister post regularly on a deafness/hearing loss group on iVillage

http://messageboards.ivillage.com/iv-bhdeafhearin?redirCnt=1

New members to either group are always welcome. (iVillage is primarily a women's site, but men sometimes do join our group for a while.)

Both of the groups welcome new members.

[eridani]

19. Resisting getting a hearing aid

--But am told that the longer you wait, the harder it is to adapt. I have heard so many complaints about background noise being boosted every bit as much as what you want to hear. Husband and co-workers are getting increasingly irritated. WHAT!?!? WHAT!?!?

[RC]

20. And these 'experts' on hearing aids have & use their own hearing aids?

Before I got mine (both ears), I could not understand my youngest daughter no matter how hard I tried. The fact I can understand speech and enjoy music again more than makes up for any short comings, real or perceived.

Mine is nerve deafness from the Navy in the '60's

[eridani]

27. Yes. My mother was particularly adamant

It sort of ticked me and my brothers off to have spent all the money on something that she refused to use.

[clydefrand]

21. I'm so glad this forum has become available. I've just sent it to my

husband so that he can visit and participate here. He won't have to say "WHAT?" or what say?

He's going next week to learn about a new aid on the market. Hopefully, it will prove better than his former ones.

[China_cat]

22. Not profoundly deaf

but have lost my hearing over the years starting with having measles as a child. At the point now where I can't hear well enough to use the telephone and aids don't seem to do much for me.

Thank goodness for computers and the internet.

[uppityperson]

23. bilat aids, inherited and exposure deafness, idea for affordable aids

I have bilat hearing aids, digital ones which I really like. I noticed not being able to hear tweety birds around 30 after working around loud noises and loud music exposure, plus most everyone the next generation up is HOH. I have gotten tested over the last 20 yrs, finally got aids a couple yrs ago and am quite happy with them. I still cannot hear as I used to, but it helps a whole bunch. My friends and family are happier that I can hear them, and I am not quite so isolating as I was.

I could not afford aids. They cost too much and I have no insurance coverage. A relative told me of a decent local audiologist that helped by selling an older "floor model" aid to her at cost. So I got 2 digital non-fitted (need a foam cover) in the ear aids for around $400 each (less than 1/2 price). They were not used, just used to show people what they looked like, etc. 1 broke and the company exchanged it for a fitted in the ear one (was still under warranty) for $50, then the other one also had problems so I now have 2 digital intheear aids for about $1000 total (each of which is now sold for $2500). $1000 is still quite a bit, but a good bit less than buying them new.

I do not know if anyone else has had this sort of experience, but wanted to pass it on since it might be worthwhile to check and see if your audiologist has last yrs floor model to sell cheap. I also noticed recently that Costco is selling behind the ear non-fitted (foam covered) digital aids for reasonable.

[BlueStorm]

24. Hi I am a fellow Hearing Impaired

My name is Karla and I have been hearing impaired all of my life. No one knows for sure if it's genetic or caused by infections. It's probably a bit of both. I wear bilateral hearing aids but my right one doesn't seem to be working right or something. It's constantly sounding "bassy" I've had it fixed numerous times and it still sounds the same. My mom gets frustrated with me when I can't hear the conversations that are around me and I constantly say "what?" It hurts my feelings and I don't think she really understands that I can't hear low frequencies very well or that regardless of how my hearing aid acts it still picks up the surrounding sound and amplifies it.

Blue

[dmr]

25. Pardon?

I had the measles when I was 5, and immediately following that I came down with the mumps! I ended up with complete nerve deafness in my right ear; my left ear hearing is damaged too, but I don't know by how much.

I guess because I was so young I was able to adapt, and not think of it as being at a disadvantage. In some ways I know that's true, but now I reflect back, I can see how it also shaped many things in my life, and how frustrating, and at times, downright hurtful, it all has been.

My teenage son complains that I need a hearing aid, that my hearing has gotten worse. I try to explain the competition between his voice, the AC, the fans blowing and the tinnitus - it's just frustrating ...

Anyway, thank you Hawkeye, for creating this forum; already I've found something new to look into, thanks to tblue37, upthread and her website.

There is one good advantage to being totally deaf in one ear ... Sleeping! I bet those of you who are like me already know why!
:)

[SheWhoMustBeObeyed]

45. Sorry could you repeat that?

Mumps took out my right ear at six months, but I wasn't diagnosed till age eight when I was tested at school. They began seating me on the right-hand side of the classroom and my grades shot up. My parents asked why I didn't tell them I was half-deaf. I said I didn't know - I thought everyone was like me...

I protect my good ear by wearing a foam ear plug when I go out. Muffles the noise from traffic, ambulances, construction etc without blocking them. I even wear one when I use a hair dryer.

And yes, I can fall asleep anywhere, anytime...:) :hi:

[DavidDvorkin]

26. I'm also David, and I also live in Colorado.

I'm hard of hearing -- have been since childhood -- and have had hearing aids for just over a year. They've made a huge, positive difference in my life.

I wrote about my hearing problems and hearing aids here. Doing that was very satisfying.

[Hawkeye-X]

35. Hi David!

We must meet! :)

Do you enjoy playing poker? There's a deaf club called Silent Athletic Club that plays variety of poker every Saturday night. Tomorrow is our monthly poker tournament. The variety chosen is Pineapple poker (variant of Texas Holdem)

Hawkeye-X

[DavidDvorkin]

37. Nope, no poker

Or other card games, I'm afraid.

[Hawkeye-X]

38. Aw. Well,

You can still meet me. Have you looked at coloradodeaf.com?

Lots of nice resources!

[Up2Late]

28. I have tinnitus, does that count?

I have Tinnitus in at least one, and maybe both of my ears, and about 20% hearing loss in the same ear where most of my Tinnitus is.

Plus, my Dad is going deaf in one and maybe both Ears, but he often doesn't wear his hearing aid. Plus he keeps losing it (he even swallowed it once).

Anyway, I just want to tell you all Congratulations on getting a group.
Congratulations! :toast:

[StrongbadTehAwesome]

29. NTID/RIT shoutout!

I'm not deaf or HoH, but I went to RIT for my first two years of college for biochemistry (before switching to a totally non-technical major and transferring).

I took a couple ASL classes while I was there, but my friends said it was less frustrating for them to just read my lips than to try to understand my crazy, halted sign. :)

[FunkyLeprechaun]

30. Hey!

I was born profoundly deaf, lived in MN for a long time and now recently moved to the UK.

I was mainstreamed all my life, I went to Boston University and just graduated with a degree in history. I went to NTID/RIT for an EYF conference in 1999 and it was quite fun! I currently use Cued Speech and I learned a little ASL but I'm not using either since I got my CIs.

I have a sketchy history with Deaf Culture as I've gotten into some arguments with them with the following points:

1) ASL as a "real language": I can understand why Deaf people consider it a language but there are some examples that I think doesn't really make it a "real language." There's very few grammatical rules in ASL (no conjunctions, same sign for multiple words). I've taken a look at BSL and they've included connecting words in the sign language, much more grammar-friendly than ASL. The following sentence: "Can you give me some money please?" would be ASL-lised into "Give you me money, please." As a result, I've come across some ASL-user websites that are really hard to read due to the extremely bad grammar (they drop the following: the, and, but, etc;).

I do grudgingly accept it as a language because it's a form of communication. As a person who rarely uses ASL and hasn't learned all the signs, I can understand ASL in a general convo because of all the universal signs being used in it (driving, time, drink). I was nervous to not understand ASL at a dinner with some deaf people (one of whom couldn't Cue, and I couldn't sign) but I did pretty well.

You can flame me if you want on this point, but I really truly believe that all deaf people should learn English (or the main language
of their country) in order to get by in society. If they only learn ASL, they only can interact with other people who know ASL and that's not many people.

2) Is ASL going to die? I've had so many arguments with this point with passionate ASL-only users (or ASL and Cue users). Sure, it'll be kept alive by those who use ASL as their main language but the landscape is changing so much. Starting with Cued Speech in 1966 then bulky CIs in the 1980's, then teeny tiny CIs in the mid 1990s, and then doctors who are so skilled they can put CIs in babies as recently as 5 years ago. If 9/10 of deaf babies are born to hearing parents, that's the option they WILL take, no question about it.

Only 10% of babies who are born deaf got that deafness as a result of genetics. It's SO rare to have a deaf gene, my mother had the flu when she was pregnant with me, which caused my deafness. If you remember the deaf lesbians, they wanted to make sure their sperm donor had the gene for deafness in order for them to have deaf babies, so they insisted on their friend for the sperm and not from the sperm bank. I know a hearing couple who had the same gene for deafness, they were likely to have deaf babies (they had two deaf babies, but now CIed at a young age).

So if 10% of deaf babies are born to deaf parents (Deaf of Deaf), then they'll be the ones to carry on the ASL, depending on the deaf parents' method. A exception: the Gallaudet president Jane Fernandes is Deaf of Deaf but grew up Oral and didn't learn how to sign until she was 23.

As a result the ASL-user group will get smaller (as evidenced in MSAD's and Gallaudet's declining enrollment rates recently). Gallaudet is looking into accepting hearing students, as they already do for the Graduate department, who sign into their University to boost enrollment numbers and MSAD is opening up more to other methods. There's some die hard ASL people who refuse to accept this change.

Deaf politics is as fiery as politics here.

[meti57b]

33. It's not that I'm really deaf .... it's just that I can't hardly hear.

I'm glad to see this group. It will be a great place to share information.

In fact, question #1, why does it seem like there is no place you can go to learn lip reading, but there's a hearing aid store on every corner. I have a very expensive hearing aid and it just isn't all that good.

[bobbieinok]

39. hearing damaged in speaking range in both ears----runs in dad's family

I resisted getting hearing aids for a long time; the ones I now have are considered ancient (1988). I understand new ones can be adjusted as the hearing loss increases with aging.

[Dogmudgeon]

40. Nasty damage to my ears and brainstem

Deafies?

That's a new one!

I had some kind of thing that they used to call cancer, but now have decided it wasn't cancer but a Mystery Tumor. Every five years, they change their mind about it.

Most of the damage is on the left. I have no real hearing but some pressure signals can get through, which helps me in determining where sounds are coming from. However, my ability to determine where sounds are coming from is very often wrong, especially with sounds that leap into prominence. If someone wants to get my attention and speaks up, about half the time I'll reply, "yes?" and reflexively turn my head the other way.

Technically, my hearing is 90 db down on the left, 25 dB down on the right, with disproportionate loss of word discrimination on the right. Plus major difficulties with balance. Tinnitus averaging 50-60 dB, sometimes up around 80 dB, though they're all estimates, since there is no recognized clinical test for it (that I'm aware of, anyway). The brainstem damage was unexpected; I actually had the unenviable honor of discovering it myself, while testing an auditory evoked response device when I was doing neurological testing for a living.

I also have constant pain, occasional nausea, and frequent auditory pseudo-hallucinations. Although stuff like that often portends a career in comedy, I struck out at that one. But at least I'm not a Republican! :evilgrin:

--p!
Yet Another Hearing-Impaired David

[Hawkeye-X]

42. It's what we call ourselves

You know, like Deafies for Deaf People
Homies for Latinos
(the N word) for African-American

and so forth.

[tblue37]

46. Oh, yes. Deafies.

But we also sometimes call those with normal hearing "hearies." I get a kick out of that one.

[Rhiannon12866]

43. I'm checking in, though I'm not deaf, but very interested in this group.

I worked with a deaf child when I volunteered at a school for handicapped children, so learned some sign to communicate with her, and recently completed a course in ASL. I'm on board, if I'm welcome...:D

Rhiannon:hi:

[tblue37]

47. Of course you are.

One of the most highly valued members of the deaf message board that I host and another that I post on is not even slightly deaf herself. But for many years she has taught deaf and blind children. Dawn knows more about stuff we want to know than anyone else. Whenever we need information, we ask Dawn. It was Dawn who told me that I could get assistive technology free from the state of Kansas--and gave me the contact information to get an application for it. I just hooked up my amplified telephone today!