Please hope me keep "hearing!"
November 5, 2009 12:37 PM Subscribe
I'm losing my hearing. What are my options?
Almost every woman on my mother's side of the family eventually loses her hearing. The good news - this won't be a big problem for another ten years; the bad news - the first signs are showing up years earlier than my mother's and grandmother's did.
I do not have the option to see a doctor or audiologist right now and the chances are good that I won't have the option for a long while, but I will do as soon as I am able. Until then,I know that there's nothing I can do to turn around the hearing loss without seeing a doctor, but is there something I can do to allow me to continue functioning in society?
What I do know:
From my family history, I will most likely be completely deaf within thirty years, but I will be severely impaired within the next ten to fifteen. My symptoms are showing up ten to fifteen years earlier than the other women in my family. I don't want to find myself deaf with only a notebook and pen as my primary means of communication, so I want to start now and help reduce the impact of the problems I foresee. I know almost nothing about the deaf community, but I certainly don't want to offend anyone by asking ignorant questions or making inadvertently offensive comments.
I need tips on how better to read lips, and what options I have for cheap or free sign-language classes. Where should I look first? What questions should I ask when I get there? Should I try to learn ASL or should I go for a more international version? I live in the southern US, but I have friends from and will be traveling to the UK a lot, so I'm not sure what I should be doing. I'm at a loss about where to start.
Throwaway email: ehwhatdidyousay@gmail.com
Almost every woman on my mother's side of the family eventually loses her hearing. The good news - this won't be a big problem for another ten years; the bad news - the first signs are showing up years earlier than my mother's and grandmother's did.
I do not have the option to see a doctor or audiologist right now and the chances are good that I won't have the option for a long while, but I will do as soon as I am able. Until then,I know that there's nothing I can do to turn around the hearing loss without seeing a doctor, but is there something I can do to allow me to continue functioning in society?
What I do know:
From my family history, I will most likely be completely deaf within thirty years, but I will be severely impaired within the next ten to fifteen. My symptoms are showing up ten to fifteen years earlier than the other women in my family. I don't want to find myself deaf with only a notebook and pen as my primary means of communication, so I want to start now and help reduce the impact of the problems I foresee. I know almost nothing about the deaf community, but I certainly don't want to offend anyone by asking ignorant questions or making inadvertently offensive comments.
I need tips on how better to read lips, and what options I have for cheap or free sign-language classes. Where should I look first? What questions should I ask when I get there? Should I try to learn ASL or should I go for a more international version? I live in the southern US, but I have friends from and will be traveling to the UK a lot, so I'm not sure what I should be doing. I'm at a loss about where to start.
Throwaway email: ehwhatdidyousay@gmail.com
I do not have the option to see a doctor or audiologist right now and the chances are good that I won't have the option for a long while
I assume this is because you don't have insurance. Call a few offices and see if they will see you on a sliding scale. I agree with elder18; it could be something relatively minor and coincidental to your family history. Don't assume; find out. There are places that offer free or low cost screenings, like this organization in Cleveland (whose website also has a lot of great information). I'd search for something similar in your city, or email the Cleveland folks and ask for a reference.
I've been hearing impaired (not completely deaf) since birth. I'm not a part of the deaf community, and I don't know ASL. Most hearing people don't, and since you're not already involved in the deaf community, I'm not sure why it would ever be a main mode of communication for you. Other people in your life can still hear you; you just can't hear them.
I wear hearing aids. When I'm at the theater, I use an induction loop that amplifies the sound. I use closed captioning when watching TV or DVDs. I learned to read lips as a kid, so I'm not sure exactly how you'd approach that as an adult, but one suggestion is to watch TV with the sound off and the captions on. Make sure that people around you know that they need to face you when speaking to you. You can pick up a lot just from body language. Let people know how to get your attention in a visual or tactile manner (e.g. is it OK to tap you on the shoulder?). Get an alarm clock that flashes the lights or vibrates the pillow. You might eventually need a TTY phone, though I don't use one. I communicate through email and IM whenever possible.
If you have follow-up questions, feel free to memail me or use the gmail address in my profile.
posted by desjardins at 1:10 PM on November 5, 2009
I assume this is because you don't have insurance. Call a few offices and see if they will see you on a sliding scale. I agree with elder18; it could be something relatively minor and coincidental to your family history. Don't assume; find out. There are places that offer free or low cost screenings, like this organization in Cleveland (whose website also has a lot of great information). I'd search for something similar in your city, or email the Cleveland folks and ask for a reference.
I've been hearing impaired (not completely deaf) since birth. I'm not a part of the deaf community, and I don't know ASL. Most hearing people don't, and since you're not already involved in the deaf community, I'm not sure why it would ever be a main mode of communication for you. Other people in your life can still hear you; you just can't hear them.
I wear hearing aids. When I'm at the theater, I use an induction loop that amplifies the sound. I use closed captioning when watching TV or DVDs. I learned to read lips as a kid, so I'm not sure exactly how you'd approach that as an adult, but one suggestion is to watch TV with the sound off and the captions on. Make sure that people around you know that they need to face you when speaking to you. You can pick up a lot just from body language. Let people know how to get your attention in a visual or tactile manner (e.g. is it OK to tap you on the shoulder?). Get an alarm clock that flashes the lights or vibrates the pillow. You might eventually need a TTY phone, though I don't use one. I communicate through email and IM whenever possible.
If you have follow-up questions, feel free to memail me or use the gmail address in my profile.
posted by desjardins at 1:10 PM on November 5, 2009
In regards to which sign language you should learn:
While there is technically a sort of International Sign Language, nobody you interact with uses it. Unfortunately for you, American Sign Language and British Sign Language are completely unrelated (think English vs Chinese). ASL is probably the most ubiquitous sign language, but just because that's where you live (and thus what the people in your area will know/teach) I would recommend it anyway.
For cheap classes, try community colleges in your area -- some states offer very cheap one-off classes to residents. Your local Deaf school is also a good resource for finding classes or informal chat groups in your area (the latter of which is an excellent way to get your skills up, but you probably want to take at least 1 class first so you have a base.
posted by brainmouse at 1:15 PM on November 5, 2009
While there is technically a sort of International Sign Language, nobody you interact with uses it. Unfortunately for you, American Sign Language and British Sign Language are completely unrelated (think English vs Chinese). ASL is probably the most ubiquitous sign language, but just because that's where you live (and thus what the people in your area will know/teach) I would recommend it anyway.
For cheap classes, try community colleges in your area -- some states offer very cheap one-off classes to residents. Your local Deaf school is also a good resource for finding classes or informal chat groups in your area (the latter of which is an excellent way to get your skills up, but you probably want to take at least 1 class first so you have a base.
posted by brainmouse at 1:15 PM on November 5, 2009
What are your current symptoms? I'm an audiologist and would be happy to answer any questions that I can.
My best advice is to second elder's suggestion to seek some kind of medical evaluation to make sure it isn't something more benign like earwax or an ear infection. Also if possible, it would be a really good idea to (if you don't have it already) get health insurance that covers possibly hearing aids, but definitely cochlear implants. If your family history does point you in the direction of totally losing your hearing in the near future, you will want to explore this option. A cochlear implant is a surgical prosthesis that restores hearing (although it's different than natural hearing) in individuals that are deaf or extremely hard of hearing. I'm not very familiar with how pre-existing conditions work with cochlear implants, but it's an expensive surgery and anything you can do now to prevent a lot of expense in the future would be a good thing.
That said, take a deep breath. There is a lot of technology and assistance programs out there that will help you. It is very rare that a person is left with nothing but a pen and paper for communication. Please let me know if I can be of any help. I know the prospects of losing your hearing can be very scary.
posted by Carhart at 1:18 PM on November 5, 2009 [5 favorites]
My best advice is to second elder's suggestion to seek some kind of medical evaluation to make sure it isn't something more benign like earwax or an ear infection. Also if possible, it would be a really good idea to (if you don't have it already) get health insurance that covers possibly hearing aids, but definitely cochlear implants. If your family history does point you in the direction of totally losing your hearing in the near future, you will want to explore this option. A cochlear implant is a surgical prosthesis that restores hearing (although it's different than natural hearing) in individuals that are deaf or extremely hard of hearing. I'm not very familiar with how pre-existing conditions work with cochlear implants, but it's an expensive surgery and anything you can do now to prevent a lot of expense in the future would be a good thing.
That said, take a deep breath. There is a lot of technology and assistance programs out there that will help you. It is very rare that a person is left with nothing but a pen and paper for communication. Please let me know if I can be of any help. I know the prospects of losing your hearing can be very scary.
posted by Carhart at 1:18 PM on November 5, 2009 [5 favorites]
When I've lived in semi-major cities, there have often been community education classes involving ASL, but that varies a lot by location. Look at city rec & ed stuff, community colleges, etc.
If your southern location is in AL, the Alabama School for the Deaf and Blind in Talladega (deals with each, as well as both) runs regional programs, not just for kids/school but outreach to adults, adult-onset issues, putting people in touch with other community programs, etc.
posted by aimedwander at 1:23 PM on November 5, 2009
If your southern location is in AL, the Alabama School for the Deaf and Blind in Talladega (deals with each, as well as both) runs regional programs, not just for kids/school but outreach to adults, adult-onset issues, putting people in touch with other community programs, etc.
posted by aimedwander at 1:23 PM on November 5, 2009
From my family history, I will most likely be completely deaf within thirty years, but I will be severely impaired within the next ten to fifteen.
I'm profoundly deaf now; I grew up hard of hearing, so I don't have your experience exactly, but my deafness was progressive, so I did lose it over a period of about 15ish years (I'm in my 20s now).
You don't say why you won't have the option to see an audiologist anytime soon; at a guess, lack of health insurance? If that's the case, I'd encourage you to look into your options as far as Medicare/Medicaid and Vocational Rehab services in your state - this is important stuff.
In any event, the sooner you see a professional, the better - they may not be able to prevent your hearing from getting worse in and of itself, but hearing aid technology today is far better than it was in your mother's day. (Or when I was growing up, for that matter.) More importantly, the sooner you start wearing hearing aids, the less difficult the transition will probably be, and the easier you'll find it to maintain your ability to understand speech; going without hearing aids for years and then suddenly having them means you'll forget a lot about what speech is supposed to sound like.
I grew up with hearing aids; a few years ago, I got a cochlear implant. I love my CI; it's way better for me than hearing aids were at the time I had the implant surgery. That said, you do need to have lost a /lot/ of hearing to get one - another reason to talk to an audiologist. It's not clear exactly how deaf you will be later on (you say completely, but people have a tendency to use that word in a colloquial sense), but if you become too deaf for hearing aids to be useful, a cochlear implant is almost always an option.
I don't have any suggestions with respect to lip reading, unfortunately. One of the great advantages to growing up hard of hearing is that I learned to lip read at the same time I acquired auditory English, so it's always been a natural part of speech for me. I know there have been books published on the topic, though I'm not sure they're any good; I can't say whether there are any classes or training available, though there may be. More important, perhaps, is to develop coping skills. This includes things like maximizing your ability to read lips and otherwise use visual cues (for example, if you're in a restaurant, sit with your back to a window so you don't have to fight glare to see), recognizing when an environment is too noisy to communicate well (and asking people to go elsewhere with you), and otherwise advocating for your needs.
Finally, signing. I didn't grow up signing, but it's been a wonderfully useful tool for me over the last 3-4 years, and I now consider myself culturally Deaf, or at the very least, bicultural. But it's not a silver bullet; I can only use it with other signers. This means that I still use English with my family and with my hearing friends (with the exception of a few who knew ASL before meeting me). So it may not be the best option for someone who is late-deafened, since it is a pretty significant investment of time and energy, and you may find that time and energy is more productively directed (at least at first) towards the things I've mentioned above. That said, if you do want to learn a signed language, learn ASL; it's not universal or international, but anyone you run into in the US who signs will use it. There really isn't an international signed language that's appropriate in this case. (You may also find classes mentioning Signed Exact English - avoid that. It's more cumbersome, IMO, though the details on that are a whole 'nother ball of wax.) The best classes tend to be taught by Deaf people, or at least organized by a Deaf group in your area.
I hope this is some help. I'll just close by saying that although becoming deaf as an adult can be a scary thing, there are lots of resources out there, and you will still be able to communicate with your friends and family. Also, if you want to MefiMail me, feel free. (I'd also be happy to post follow up information here for you, if you find you want to clarify anything.)
posted by spaceman_spiff at 1:31 PM on November 5, 2009 [5 favorites]
I'm profoundly deaf now; I grew up hard of hearing, so I don't have your experience exactly, but my deafness was progressive, so I did lose it over a period of about 15ish years (I'm in my 20s now).
You don't say why you won't have the option to see an audiologist anytime soon; at a guess, lack of health insurance? If that's the case, I'd encourage you to look into your options as far as Medicare/Medicaid and Vocational Rehab services in your state - this is important stuff.
In any event, the sooner you see a professional, the better - they may not be able to prevent your hearing from getting worse in and of itself, but hearing aid technology today is far better than it was in your mother's day. (Or when I was growing up, for that matter.) More importantly, the sooner you start wearing hearing aids, the less difficult the transition will probably be, and the easier you'll find it to maintain your ability to understand speech; going without hearing aids for years and then suddenly having them means you'll forget a lot about what speech is supposed to sound like.
I grew up with hearing aids; a few years ago, I got a cochlear implant. I love my CI; it's way better for me than hearing aids were at the time I had the implant surgery. That said, you do need to have lost a /lot/ of hearing to get one - another reason to talk to an audiologist. It's not clear exactly how deaf you will be later on (you say completely, but people have a tendency to use that word in a colloquial sense), but if you become too deaf for hearing aids to be useful, a cochlear implant is almost always an option.
I don't have any suggestions with respect to lip reading, unfortunately. One of the great advantages to growing up hard of hearing is that I learned to lip read at the same time I acquired auditory English, so it's always been a natural part of speech for me. I know there have been books published on the topic, though I'm not sure they're any good; I can't say whether there are any classes or training available, though there may be. More important, perhaps, is to develop coping skills. This includes things like maximizing your ability to read lips and otherwise use visual cues (for example, if you're in a restaurant, sit with your back to a window so you don't have to fight glare to see), recognizing when an environment is too noisy to communicate well (and asking people to go elsewhere with you), and otherwise advocating for your needs.
Finally, signing. I didn't grow up signing, but it's been a wonderfully useful tool for me over the last 3-4 years, and I now consider myself culturally Deaf, or at the very least, bicultural. But it's not a silver bullet; I can only use it with other signers. This means that I still use English with my family and with my hearing friends (with the exception of a few who knew ASL before meeting me). So it may not be the best option for someone who is late-deafened, since it is a pretty significant investment of time and energy, and you may find that time and energy is more productively directed (at least at first) towards the things I've mentioned above. That said, if you do want to learn a signed language, learn ASL; it's not universal or international, but anyone you run into in the US who signs will use it. There really isn't an international signed language that's appropriate in this case. (You may also find classes mentioning Signed Exact English - avoid that. It's more cumbersome, IMO, though the details on that are a whole 'nother ball of wax.) The best classes tend to be taught by Deaf people, or at least organized by a Deaf group in your area.
I hope this is some help. I'll just close by saying that although becoming deaf as an adult can be a scary thing, there are lots of resources out there, and you will still be able to communicate with your friends and family. Also, if you want to MefiMail me, feel free. (I'd also be happy to post follow up information here for you, if you find you want to clarify anything.)
posted by spaceman_spiff at 1:31 PM on November 5, 2009 [5 favorites]
Oh, also: I'm not from the south, but if you want help looking for resources - sign language classes, support groups for people who've become deaf as adults, etc - let me know where you live and I'll see what I can dig up for you.
posted by spaceman_spiff at 1:32 PM on November 5, 2009
posted by spaceman_spiff at 1:32 PM on November 5, 2009
Aaaaaaaand just because I keep thinking of things to add: if you look up the Hearing Loss Association of America (HLAA, formerly Self Help for the Hard of Hearing) and the Association of Late Deafened Adults (ALDA), you'll find that both are targeted right at you. There may be a chapter of one or both of those groups in your area; those meetings can be a great opportunity to meet people who have similar experiences and can share their stories with you. Also, those groups both can provide a lot of information and contacts that are relevant to people who are adjusting to hearing loss. I'm less familiar with ALDA, but I know HLAA has been doing a lot of work recently with vets from Iraq and Afghanistan who come back with hearing loss; so people in your position are nothing new to them.
posted by spaceman_spiff at 1:39 PM on November 5, 2009
posted by spaceman_spiff at 1:39 PM on November 5, 2009
In addition to the suggestions above, it may be worth telling people up front that you're deaf (before I got my implant, I was telling new people after the first time I didn't hear them and reminding people who already knew at the same point in the conversation). Telling them gives them the information they need to deal with you and gives them an understanding of why you're not responding, or looking confused, or giving an odd response*.
I found it really hard at first, because no one likes revealing that sort of stuff straight off the bat, but not doing it became harder. Also, people responded differently to me revealing my deafness and some are definitely better at it than others. But most people have good intentions and you get to take advantage of that if you're up front about your situation.
Of course, this might be a tactic for later on, rather than in the immediate term.
(Happy to answer further questions on memail if you like.)
*I've done all of those, more times than I care to remember, including the particularly wonderful time someone told me their business partner had passed away and I smiled and said "that's fantastic!", or the other time I had a (very kind, very patient) friend screaming "I haven't had sex for three months!" at me in a crowded restaurant because I hadn't heard them the first seven times. Charming.
posted by prettypretty at 3:06 PM on November 5, 2009 [2 favorites]
I found it really hard at first, because no one likes revealing that sort of stuff straight off the bat, but not doing it became harder. Also, people responded differently to me revealing my deafness and some are definitely better at it than others. But most people have good intentions and you get to take advantage of that if you're up front about your situation.
Of course, this might be a tactic for later on, rather than in the immediate term.
(Happy to answer further questions on memail if you like.)
*I've done all of those, more times than I care to remember, including the particularly wonderful time someone told me their business partner had passed away and I smiled and said "that's fantastic!", or the other time I had a (very kind, very patient) friend screaming "I haven't had sex for three months!" at me in a crowded restaurant because I hadn't heard them the first seven times. Charming.
posted by prettypretty at 3:06 PM on November 5, 2009 [2 favorites]
Florence Henderson had progressive hearing loss that worsened with each childbirth (I believe her condition is otosclerosis). She's spoken about it in interviews- my Google-fu fails me at the moment, but this might be worth looking into for you.
posted by twistofrhyme at 3:15 PM on November 5, 2009
posted by twistofrhyme at 3:15 PM on November 5, 2009
Telling them gives them the information they need to deal with you and gives them an understanding of why you're not responding, or looking confused, or giving an odd response.
Agreed - I've gotten a reputation of being standoffish or snobbish because I have trouble engaging in group conversations. I've also gotten myself into arguments because I didn't hear what the person said. My friends and family know to ask if I've heard them, if I don't respond to what they said. (I also strongly encourage you to incorporate "uh huh" and "mm-hmm" into your conversations so people know when you've stopped being able to hear them.)
posted by desjardins at 3:36 PM on November 5, 2009 [1 favorite]
Agreed - I've gotten a reputation of being standoffish or snobbish because I have trouble engaging in group conversations. I've also gotten myself into arguments because I didn't hear what the person said. My friends and family know to ask if I've heard them, if I don't respond to what they said. (I also strongly encourage you to incorporate "uh huh" and "mm-hmm" into your conversations so people know when you've stopped being able to hear them.)
posted by desjardins at 3:36 PM on November 5, 2009 [1 favorite]
Just to clarify....I am (obviously) not your audiologist, so my question about symptoms was only to fine tune any further advice. Some ear symptoms are minor but there are a few that warrant a trip to a physician ASAP.
posted by Carhart at 3:40 PM on November 5, 2009
posted by Carhart at 3:40 PM on November 5, 2009
Since I know there are a variety of diseases and conditions with progressive deafness as a symptom, I can't be too specific with advice without more details.
I am the son of and grandson of 2 severe hearing loss people and it's hereditary in my family. (Congenital, Sensorineural hearing loss) I grew up with a severe hearing loss and now live with a profound loss, but am not a part of the "deaf" community simply because of how I was raised in the "hearing" community.
I (unfortunately) never learned sign language but I do read lips to a large extent. As an adult with a late onset of hearing loss, reading lips will likely allow you to progress further as functionally deaf person in a "hearing" world as your condition worsens. Luckily for you, being deaf can be managed in a way that can have a lot less impact on your lifestyle than you think.
All good ideas above:
Let people know about your loss (especially in group situations)
Let people know to get your attention...
Actively scan and engage your surroundings and focus on the speaker.
seconding just about everything above.
Another thing to think of while learning to read lips or when you have difficulty following a conversation is a sort of "conversational rolodex" Think of your vocabulary in terms of groupings of words that sound alike. When you're having a conversation with someone about one particular topic, and you don't quite catch a word... your lip-reading will assist in catching that elusive consonant or letter and your rolodex of word possibilities will let you know that your friend just bought a "new boat" and not a "new goat"
Please do pursue other options for seeing a doctor or audiologist to discuss the condition your relatives have and ways that you can specifically manage that disease or condition.
I wish you the best of luck!
posted by emjay at 6:08 PM on November 5, 2009 [1 favorite]
I am the son of and grandson of 2 severe hearing loss people and it's hereditary in my family. (Congenital, Sensorineural hearing loss) I grew up with a severe hearing loss and now live with a profound loss, but am not a part of the "deaf" community simply because of how I was raised in the "hearing" community.
I (unfortunately) never learned sign language but I do read lips to a large extent. As an adult with a late onset of hearing loss, reading lips will likely allow you to progress further as functionally deaf person in a "hearing" world as your condition worsens. Luckily for you, being deaf can be managed in a way that can have a lot less impact on your lifestyle than you think.
All good ideas above:
Let people know about your loss (especially in group situations)
Let people know to get your attention...
Actively scan and engage your surroundings and focus on the speaker.
seconding just about everything above.
Another thing to think of while learning to read lips or when you have difficulty following a conversation is a sort of "conversational rolodex" Think of your vocabulary in terms of groupings of words that sound alike. When you're having a conversation with someone about one particular topic, and you don't quite catch a word... your lip-reading will assist in catching that elusive consonant or letter and your rolodex of word possibilities will let you know that your friend just bought a "new boat" and not a "new goat"
Please do pursue other options for seeing a doctor or audiologist to discuss the condition your relatives have and ways that you can specifically manage that disease or condition.
I wish you the best of luck!
posted by emjay at 6:08 PM on November 5, 2009 [1 favorite]
This is an only marginally helpful answer, but if your family history is of otosclerosis, you might want to take calcium. And it's a treatable condition, so try really hard to figure out a way to get to the doctor. Think long-term versus short-term costs.
posted by molybdenumblue at 6:10 PM on November 5, 2009
posted by molybdenumblue at 6:10 PM on November 5, 2009
I know someone whose hearing in one ear just started showing signs of going. It's been dignosed as otosclerosis, a.k.a. Conductive Hearing Loss (as opposed to loss caused by failure of or damage to a nerve). It's far more common than I would have suspected -- one million people in the U.S.? -- and, as was mentioned, genetic.
Someone who has it and whose brother has it described it as being similar to arthritis of the ear bones. Not a clinical description, sure, but pretty close. Anyway, surgery fixes it, and there's also hearing aids if that doesn't work out.
I don't know that getting this problem diagnosed early will help, but if it is in fact something else then you would want an ENT looking at it. So I really encourage you to find someone who will examine you. Is there a teaching hospital nearby who might have an interested researcher on staff?
posted by wenestvedt at 6:33 AM on November 6, 2009
Someone who has it and whose brother has it described it as being similar to arthritis of the ear bones. Not a clinical description, sure, but pretty close. Anyway, surgery fixes it, and there's also hearing aids if that doesn't work out.
I don't know that getting this problem diagnosed early will help, but if it is in fact something else then you would want an ENT looking at it. So I really encourage you to find someone who will examine you. Is there a teaching hospital nearby who might have an interested researcher on staff?
posted by wenestvedt at 6:33 AM on November 6, 2009
This thread is closed to new comments.
posted by elder18 at 12:46 PM on November 5, 2009