sallylou

CJB, you have a great sense of humor.

quirkylibra, I have balance problems, too. I'm clumsy and always running into things. The part of me that perceives what's around me and how far in distance it is doesn't work properly. In fancy terms, I have issues with vestibular system. Don't feel alone in this.

Thanks to each of you who responded. I guess that I am sociable here and in the activities that I attend. I feel more at ease in this forum because people here understand. I've had to reevaluate some of my friendships because the people in question are not supportive. That's for the best, though.

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quirkylibra

I agree, CJB, your sense of humor is wonderful

It's nice to know I'm not alone. Sometimes it feels like I am. I don't have any friends who have the same problems, so people think I'm being silly. I also noticed that people at work and school are not very interested in making friends with a girl with HAs. People will talk to me in the begining of the semester because they notice, and then the next thing I know, they aren't talking to me anymore. Maybe I am paranoid, but I don't think so. I guess with my long hair hiding my HAs and my speaking, they assume I am "normal". I have an accent, but most pep don't notice. Sorry about the ranting lol

sallylou

No need to apologize, quirkylibra. That's what we're here for--to listen and support each other.

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CJB

for the compliment sallylou and quickylibra. Good to know you're not just typing : laugh : or : lol :while painfully cringing on the inside.

jillio

I just have to say that I am loving the way you guys support each other and share experience that is valuable to other members. I had concerns over whether we could actually get that process working in an online forum, but my concerns have all been alleviated. The input I have had to contribute has been minimal, and you guys have taken over the process; which is the way it should function in a group setting. You would be a great example for some of the clients I work with in face to face settings!

Bottesini

My idea. (smug)

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jillio

Yes, it was. We have to give Bott full credit for coming up with the idea.

Bottesini

:d Stupid smiley won't work.

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jillio

'Tis okay. I get the message!

dogmom

am glad of your idea, Bott and for compliment and all thoughts too, Jillio

both hubby and I were considered "different" in childhood and the experiences and issues surrounding that for him, as well as probably other stuff<among other things, he was adopted>, have led some emotional stuff about that to this day, which is illustrated in his reluctance to use ASL in public. Some years back I taught him ILY sign and we use that in public. But at home, sometimes we use "home signs" and he seems more open to just the idea of it and so I just want to everybody here who I share with, as hubby and I go along on this journey at home-

quirkylibra

Great Idea

quirkylibra

CJB

Bottesini.

ms_redcat

It's not that all sound is too much, it's that some sounds are -- particularly high-pitched ones. Some days are better than others with that. At first it was all the time -- I'd be walking down the street and pass a playground, and the sound of the kids squealing happily hurt really bad. It's not at that level now, thank goodness!

I have noticed that if I'm having a Bad Ear Day (I have Meniere's, which fluctuates), my noise tolerance gets lower across the board.

sallylou

I have phantom noises. I can hear high pitched noises that aren't real. Sometimes, I hear a voice that not real. At first, I thought that I was going crazy. Now, I just turn to my husband and ask "Did you hear that?"

Here's some info:

Turning Down the Phantom Noise Inside the Head - The New York Times

Thanks to Bott and Jillio for this space!

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CJB

Oh in that case, I totally understand what you mean. There are some frequencies I'm really sensitive to that shoot a shooting pain in my head. It's hard to convey to other people that you can be both hard-of-hearing and sound-sensitive, though. for explaining.

quirkylibra

I hear a lot of phantom noise. I didn't know what it was at first, then I read something about it and was like "ooooohhhhhhhhhhhh!!!"

jillio

The phenomenon of "phantom noise" in someone who has lost hearing later in life is similar to the concept of "phantom pain" that someone feels after a limb has been amputated. It is a very real phenomenon.

LDNanna

Thank you both Bottesini and Jillio. Just one more reason to love you.

saywhatkid

Nothing like telling people about "Bad Ear Days" to get them scratching their heads. When my Meniere's pays me a visit, I can hear a car with a bad muffler from a mile away.

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"Be faithful in small things because it is in them that your strength lies." ~ Mother Teresa

hohpolice

Hey sallylou, sorry for being so long, busy. Truce. You mentioned that you hear but without your ha's, you have difficulty. I am the same. I can hear, but I cannot understand. There is a difference. It is this difference that people cannot understand. I can hear most of the conversation, but I only understand about 40% of it.

sallylou

Hi, hohpolice. My hearing loss is in the speech zone so I'm always filling in the blanks. It's like playing Wheel of Fortune every time you have a conversation. Pat, I'd like to buy a vowel!

For example, I hear "e--e--tor races." I guess "alligator races." Good try, but it was "elevator races." Slight difference. It makes for some comical conversations.

I can listen best when it's one-on-one with no back ground noise. Listening is really exhausting for me. Many of us here talk about the fatigue that comes with hearing loss. By the end of the day, I'm grateful to take off my hearing aids and take a break from the noise. I like being able to turn off my ears.

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FxAvatar

Ok, this is really the first post for me and I am sorry if this becomes a book, as I have just found the site and have been reading as many posts as I can all weekend. Originally, I started looking for info about the Deaf community to help my mother, but after reading some of the stories of Late Onset forum as well as many in the our life, our culture areas I am wondering about myself as well. You see, my mother has about 75% loss in one ear and about 50% in the other. Despite this, she refuses to get hearing aids. Her hearing has been going in chunks for years, and her brother and sisters all have some degree of hearing loss as well. Her mother is all but deaf, but HA’s give her nothing but basic recognition of sound, personally I think she lip reads since she will only understand you if you look right at her while she is looking right at you. My grandmother, and in most part my mother as well, look at the loss of hearing as the families hushed secret and it is not talked about. My aunts and my uncle all have hearing loss to some degree as well, but most refuse to bring it up or discuss it.
Back in high school, I met my first Deaf kid, and we became friends. He was HoH, but used sign for 90% of his conversations and I started to learn sign from him. Sadly, his parents moved him to a private school for the deaf and I lost contact.. When I tried to teach my mother at the time some of the signs I had learned from him, after all, at this point, she was about 30% loss in one and almost none in the other, she rejected it as silly non-sense and that her hearing was not that bad. Now, I am starting to notice that I am asking my friends to repeat what they say, and getting a random ringing tone in my ears (tell I read about this on this forums, I just thought it was part of my headaches or something) I am wondering if I am following the same path as my mother. I have not gone in to get checked out, half of lack of medical coverage since getting laid off from Sprint, and the other half is that if I am shown as having hearing loss, it could cost me my temp job, since I do over-the-phone tech support right now. I have started to learn sign again since I still think it is a beautiful language and I wish I had not stopped learning it when my friend moved away, but my main issue is how to convince my mother to start learning as well. I know that she is going to get worse based on her parents and older siblings, and she seems more open about her issues now that it has gotten to the point I have had to wire the stereo to the TV for her to hear it, and she is getting complaints about the noise.
Anyone that has gone though late onset deafness have any ideas on how I should help her get moved from hardly hearing to HoH..

sallylou

Your mother is an adult and you can't make her decisions for her, assuming that she hasn't been declared legally incompetent. It's unfortunate that she won't deal with her hearing loss in a healthier way but you can't force her to adjust the way that you want. I know that's hard and I'm sorry.

I recommend putting your energy into your own adjustment to hearing loss. You've already starting by joining AD. Welcome! You have the desire to learn ASL and that's a great idea. You can serve as a model of healthy adjustment to your mother. Maybe that will help and maybe it won't. In any case, you'll be taking care of yourself, which must be your first priority.

I understand what your family culture is like. I have dominate progressive hearing loss and I'm the first person in my family to actually deal with it. It's like I'm a great adventurer or a trail blazer. I hope that you'll hang around AD and get some ideas for adjusting. You'll find that people here understand.

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dogmom

FXAvatar

sally, have ?, if I may....u go to geneticist or ENT to determine "dominant progressive loss"? Or did u already know from family history?

sallylou

It's in my family. My grandfather, then my mom and now me. If you have a dominant loss it will be in your family. 50/50 chance that offspring will be effected (my kids).

I understand that most genetic hearing loss is recessive (instead of dominant). With recessive loss, the parents don't know of hearing loss in their families.

You'd think that being in a deaf family would be helpful. My family, like FxAvatar's family, lived in denial and with shame. It's sad to see people suffer so needlessly. I'm grateful that I have more resources--like the internet to find my comrades.

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dogmom

ahh, okay again sally
yes, the Internet can bring folks closer together to share in something in a way that one's own family may not be able to

CJB

Such a good way of explaining it.

Same here. One-on-one in a quiet room is okay but it still takes a lot of energy to understand. That's why signing is nice even when I can make do with just speech. Takes much less effort.

melissa

I'm not late-deafened but I love the wheel of fortune analogy- I'm usually fine one-on-one in a quiet room but crowds result in exactly what you said, sallylou! I go to a weekly class to build self-confidence for people who've been out of work for a while, and I'm actually too scared to tell the speaker/tutor I wear hearing aids..she's very clear and loud, it's the rest of the class that isn't!

FxAvatar

I understand this, I really do. I would like to help her but I think she is a lot like I was in thinking that it is just how our family is, and you just have to deal with it. I had the luck of thinking back to my friend in high school that changed from hearing to HoH, but he was much younger. My random fascination with ASL and my dizzy spell with hearing loss really got me thinking of a "backup" to hearing in case I got as bad as the rest of my family, but I was not sure if anyone else had any luck of bringing options to a family member that was losing their hearing.

This was what my main plan was to start with, I thought that if I can learn it, then try to swing her to using some basic signs.. it is a long goal to reach, but thought it would be worth reaching for. I really didn't think my loss was going to be a issue for years to come, but as I said, reading here, and thinking of the warning signs as what they really are.. I am going to focus on my own issues of loss. To tell you the truth, before this weekend.. despite my loss while getting the heavy dizzy spell, I really thought it was the other way around.. that I was sick with a bug that made me dizzy, and since my balance is in the ear's, it was just blocking my hearing.. Now I think it could be the other way around after reading what others have have experienced.

Oo I am so right next to you. I wonder if your family gatherings are like mine, where everyone seems to be yelling to each other.. yet, nobody has a issue?.. I think they all have the same mind set that my grandmother has, that going deaf is a weakness.. and should be resisted or covered up.