Adjustment to late onset deafness

I am proud of you. glad you could stand up to them and vent and say how you fell there si a lot of us out here who will remain silent and not let other mow over us.. but thank you again .I wish you all the luck in the world, thanks for making it better for us..Linda
 
I am courious did you get the class to use the chaulk boards.. ? That was great.. I know you mad a great impression.. keep up the great work..keep me posted.. smile were all in the same boat,so to speak...Linda
 
Hi :)

I am happy to find this thread. I am new here and found this website in a search to find support and friends with other people like me. This is my story, sorry if its long and if it seems like a sob story. I know I don't have it as bad as other people, but I just looking for other people who understand my new obstacles in life and feelings:

In my late 20's I started getting dizzy. At first I thought, oh I must be pregnant. Went to the Dr's with my husband for the good news, and they diagnosed me with vertigo instead and sent me home telling me it would probably just "go away."

Around the same time, I started noticing that everyone was mumbling all the time. I was getting iterated with my kids and husband for not speaking clearly. Then everyone was complaining that I was blaring the radio and TV. Then in class, it seemed that every teacher I had was talking to quietly and mumbling too! I was so irritated about this! Finally, my husband said he thinks I should go to the Dr. He thinks my hearing is not right.

I went to my PCP Dr again, who did not put it together that the last time he saw me was for dizzy. I didn't put it together either, since I didn't even know anything about hearing loss. He tells me that I don't have a hearing problem (without even giving me a test!) because if I had a hearing problem, I wouldn't be able to hear him in his office. He then tells me I have ADD because my problem must be "listening" and not "hearing". I was pretty mad and told him I do not believe I have ADD since I have NO OTHER SYMPTOMS of that and to send me to a specialist. Once I saw a specialist, she confirmed I am very much HoH and reviewed my medical records and said my Dr is not the smartest, since he should have been able to link the dizziness with my next appointment.

As time goes on it has gotten worse quickly. Only been less than 5 years and already it is so much worse. I feel like so many of you. I have no friends who are deaf or HoH. I have been learning ASL for a few years and getting better at it, but how will this help me socially if everyone in my life is hearing? Some days I cope OK, other days I cry and cry. I even worry that if I lose my hearing too much more, what if my husband doesn't want to be with someone like me anymore. He has shown NO interest in learning ASL. The only one in my family who has shown interest is my ten year old daughter (bless her heart!!).

Lots of new challenges. I want to meet others like me, but I get really shy when I go to events in the deaf community. Seems like a lot of cultural rules that I don't want to offend anyone. They often mistake me for an ASL student who is not HoH since my sign isn't very good. I get a stand off vibe sometimes from other deaf/HoH people at these events, and that makes me even more reluctant to approach other HoH/deaf people. My friends and family now gets frustrated with my hearing loss. Starting to feel like I don't fit anywhere. Don't fit with deaf community, fitting in less and less with hearing.

My new employer has been very difficult to get an RTC services from. All sorts of new stresses hearing loss causes. When I am in class (I am in graduate school to become a college English professor) with my terps or RTC, the other classmates don't want me in their groups or want to partner up with me. Its lonely.
 
guess were in the same world..

SerendipityG3A said:
I'm not sure if I'm adjusting or rebelling. I keep losing my hearing so I can no longer play my musical instruments of choice since I can't tell if I'm playing them in tune. I can't hear conversations when more than one other person is involved, and my family seems to have given up signing altogether. I spend most of my time here alone on my computer since I don't rely on my hearing in this environment. I tried to associate with some deaf (probably with a capital D), but they were very rude to me and made me feel like an outcast. I've had HA's for years, but if they're loud enough for me to hear, they're too loud to tolerate. I prefer the silence. I guess that's where I am now.
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I am sorry that you too are having a diffacult time. I am in the same boat.. but deaf in left and a little hearing in the right.. just enough to be confuseing. tv wont work right especially if others that there and want to hear at a tone they can tolerate.. My hearing aide wont work as it is way to loud for me to even understand .so yes here we are .. do you sign I have conversationsl asl and some others.. so if you want to put up with me come on.. I will be glad to tyoe or try and sign a conversation with you. Linda touch me and I will come do what ever you want .. dont be alone as i am //
 
man oh man I feel like I am mother hen ,, I am so old and all of you are so young.. maybe in the worng room.. late deaf too. but feel very old compaired to all of you..
 
Birdlady, you are only five years older than me ... besides, what is a number? Your location says Arizona. Where in Arizona? I am in AZ too. Who knows, we might be in the same area! It is hard to not have someone to practice ASL with.
 
Brittany, I am so sorry your husband isn't interested in learning ASL. I am so blessed that my husband is very supportive and learning with me. Perhaps he will become interest in time. Learn with your kids ... soon he will feel left out of conversations and will have to learn! Try not to nag though ... that never helps! Trust me, I know! You are the age of my youngest son!
 
birdlady said:
man oh man I feel like I am mother hen ,, I am so old and all of you are so young.. maybe in the worng room.. late deaf too. but feel very old compaired to all of you..
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Nah, I may be the eldest here.....I'm 69, going on 44, :lol:
 
BrittBritt--If you don't mind my saying this, your doctor is an ass. I'm sorry it took so long for someone to put 2 and 2 together for you. :-/ I'm glad you found this place. Being stuck between Hearing and Deaf worlds really blows.
 
I'm another old mother hen in this group. I am 60 and have severe hearing loss, getting worse over the last ten or so years. I can't use hearing aids due to inflammatory response from other major health issues.

I'm so sorry that you had the awful doctor experience, Britt. I have had too many of those... including the audiologist I should NOT have worked with for two years and paid thousands for hearing aids I could not use.

I too have lost many people I thought were my good friends. My family won't learn ASL and they stay away from me because it's just too much work I guess. For the last six years I have been struggling to learn sign and continue to work on it every day as well as trying to reach out and meet others who are d/Deaf, HOH or hearing learning ASL. It is not easy at all, especially living in rural Vermont. I drive 45 minutes one way up to the 'big' city several times per week to meet with my Deaf tutor and practice ASL with a few others who are learning. I do find though that practicing ASL with people who are hearing is very different from those who are trying to learn ASL due to hearing loss or other health issue.

Tess, my service dog, and I pretty much live in a bubble.
 
needsleep said:
BrittBritt--If you don't mind my saying this, your doctor is an ass. QUOTE]


Don't be sorry. He is an ass. I let him know so. He also got a call from my audiologist telling him that he obviously isn't qualified to deal with patients who have hearing issues, and to always refer them over to her instead of to a mental health department when a patient complains of hearing issues. She wondered how many other hard of hearing people he had sent over there, and who may have been put on Ritalin or some other awful drugs for ADD when they were actually HoH. I don't even want to think about it. He was very arrogant too about it. I had to get angry to get him to change my referral from mental health specialist, to audiological specialist. Not to mention that the man gave me a "hearing test" with an iPhone app in his office. And when I couldn't hear some of the tones, he told me that it didn't matter because he could hardly hear those ones anyways. And he only gave me like 5 "iPhone" tones to listen to for the entire "hearing test." The whole experience was absolutely preposterous! I spoke with a manager at Kaiser and changed PCPs immediately.
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podiecat said:
I too have lost many people I thought were my good friends. My family won't learn ASL and they stay away from me because it's just too much work I guess.

Tess, my service dog, and I pretty much live in a bubble.
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This is my worst fear :( At least my daughter is learning and will always be a part of my life. She is just the sweetest.

I just found out about service dogs for HoH. I was thinking about getting one. I was thinking it may give me emotional support as well as help me with my hearing. My loss is only "severe" right now. I dont know how bad it has to be to have a service dog.
 
BrittBritt said:
needsleep said:
BrittBritt--If you don't mind my saying this, your doctor is an ass. QUOTE]


Don't be sorry. He is an ass. I let him know so. He also got a call from my audiologist telling him that he obviously isn't qualified to deal with patients who have hearing issues, and to always refer them over to her instead of to a mental health department when a patient complains of hearing issues. She wondered how many other hard of hearing people he had sent over there, and who may have been put on Ritalin or some other awful drugs for ADD when they were actually HoH. I don't even want to think about it. He was very arrogant too about it. I had to get angry to get him to change my referral from mental health specialist, to audiological specialist. Not to mention that the man gave me a "hearing test" with an iPhone app in his office. And when I couldn't hear some of the tones, he told me that it didn't matter because he could hardly hear those ones anyways. And he only gave me like 5 "iPhone" tones to listen to for the entire "hearing test." The whole experience was absolutely preposterous! I spoke with a manager at Kaiser and changed PCPs immediately.
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:jaw: Report him to every authority you can. That kind of behavior is completely inexcusable!
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Hello...

Razzette said:
Birdlady, you are only five years older than me ... besides, what is a number? Your location says Arizona. Where in Arizona? I am in AZ too. Who knows, we might be in the same area! It is hard to not have someone to practice ASL with.
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I live in ft mohave arizona close to laughlin nevada..where are You? My husband would love to be able to be a full time rver..
 
podiecat said:
I'm another old mother hen in this group. I am 60 and have severe hearing loss, getting worse over the last ten or so years. I can't use hearing aids due to inflammatory response from other major health issues.

I'm so sorry that you had the awful doctor experience, Britt. I have had too many of those... including the audiologist I should NOT have worked with for two years and paid thousands for hearing aids I could not use.

I too have lost many people I thought were my good friends. My family won't learn ASL and they stay away from me because it's just too much work I guess. For the last six years I have been struggling to learn sign and continue to work on it every day as well as trying to reach out and meet others who are d/Deaf, HOH or hearing learning ASL. It is not easy at all, especially living in rural Vermont. I drive 45 minutes one way up to the 'big' city several times per week to meet with my Deaf tutor and practice ASL with a few others who are learning. I do find though that practicing ASL with people who are hearing is very different from those who are trying to learn ASL due to hearing loss or other health issue.

Tess, my service dog, and I pretty much live in a bubble.
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Hello Tess.I too am lete deafness. mine from a brain tumor I am in the same boat, no one wants to learn and I have to if i want to communicate when it all goes.. I hear a little in the right ear.. but deaf in left.. I live in arizona across the us from you ,but I am learning self teaching signs also..
 
This is my worst fear :( At least my daughter is learning and will always be a part of my life. She is just the sweetest.

I just found out about service dogs for HoH. I was thinking about getting one. I was thinking it may give me emotional support as well as help me with my hearing. My loss is only "severe" right now. I dont know how bad it has to be to have a service dog.
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Hi BrittBritt,
If you keep signing with your daughter all day, rather than speaking or speaking while signing, I think it will become easier and more natural for both of you. What has happened with me is that even though I study and practice ASL everyday, in real life I lack self confidence and have major trouble remembering signs I know, or receiving sign (especially fingerspelling) in real life. My Granddaughter began to learn sign with me when about 5 years old but has moved away. Now when she comes to visit her 11 year old self is not as willing to sign with me. I need more confidence myself for sure, rather than letting others think I'm understanding way more, speech or ASL, than I really am.

Tess, who's picture is on the left, is my life now. When my 13 year old pet heart-dog died 5 1/2 years ago at age 13, I thought I would be ok once the immense grieving passed. A week after she died there were break-ins on my rural road. I realized that in addition to Hannah being my heart, she was my ears. I felt so vulnerable! I then realized I could not hear unless I knew specifically what sound I was supposed to hear.

I ordered the older book by Martha Hoffman (Martha Hoffman Hearing Dog Training) "Lend Me An Ear". I read through that great book and searched for the right hearing dog candidate for six months until I found the pup I thought was the right one to train. Yes, that pup I absolutely loved and I did successfully train sound alerts, but I have other health issues also. I felt beat up by my high-energy pup and knew I could not wait two or more years for her to settle down/mellow out. The ideal hearing dog is not the right match for me! Through endless sobbing I found a great home for her.

Then I acted totally impetuous, like a teenage girl looking for love, and found Tess on Petfinders. Do Not Do This! I swear I lost all sanity. I can laugh about it now and I can't think about Tess not being with me 24/7, but it was totally insane. I drove over 1,000 miles one way and got her, a dog who was very sick with bad respiratory infection and totally traumatized from being on death row, ready to be gassed.

It's a very long story... including me being sure she was deaf for the first few months until she almost got my friend's guinea hens. Her ears did move to the sounds that I did not hear!!! That was the beginning of one of the most challenging things I've ever done. Tess alerts solidly to the specific sounds I taught her to, she helps me with balance and right sided weakness, picks things up for me, and is my social connector. LOL Tess has given me life and we are totally compatible after 4 1/2 years of challenge and training. Certainly my most successful relationship ever! lol

To be honest though, I am not a normal person with a normal life filled with family, work and lots of friends. I never have been, even when my ears worked. Having a service dog often brings attention you don't want. I owner-trained Tess myself, and the other pup, because I already had dog training experience and... I did not have much of a life other than trying to get physically and emotionally healthier. It was a very scary time for me.

I recommend reading through Martha Hoffman's site and maybe even contacting her. Then, look into HearingDog programs. I have heard bad things from a few people about some organizations. The right match of a dog is absolutely most important. The closed FaceBook group, 'Please Don't Pet Me', can be very helpful. And I am here to offer any help/support if I can.
 
birdlady said:
Hello Tess.I too am la:deaf:te deafness. mine from a brain tumor I am in the same boat, no one wants to learn and I have to if i want to communicate when it all goes.. I hear a little in the right ear.. but deaf in left.. I live in arizona across the us from you ,but I am learning self teaching signs also..
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Hi Birdlady,

I believe I got a PM from you this morning. Yes I would like to try practicing ASL with you. I will need a few days to figure out SKYPE. I have found that Bill Vicars and LifePrint.com have been the best for me. I did end up paying the $50 or so for a year's membership and so glad I did. Between all of the courses, ASL 1-4, Fingerspelling 1, and soon to be Classifier class, and Android/IOS practice apps you can use off-line, it has been super! It does not replace signing with native d/Deaf signers though. And there will be different signs for words between their California signs and your locale but I have found that finally I am retaining more ASL. And it's fun also!!!

Oh... my real name is Carol. Tess is my dog. lol
Your dog looks so very sweet!!!
 
@Carol..I also am tring to retain what I learn.I find that if I watch the videos I can slow them down to a speed and rewind so to speak.That helps me Yes I have been TO Bill vascare site..it is nice.. I will also go to the other sites you mentioned.. Martha Huffman. Linda
 
Hi, I'm Tori. I'm new to AD and this board was recommended to me by another member. I'm 17 years old and was recently diagnosed with progressive hearing loss with an unknown cause.

My diagnosis really scares me. I'd always planned on minoring in music when I went to college, but now I'm scared that is no longer an option for me. Music has always been a very big part of my life (I play piano, guitar, flute, piccolo, I'm in chorus, ect...) and I hate the feeling that I am losing a major part of who I am.

I know I need to learn ASL, but there are no classes or teachers around me and there (to my knowledge) is not really a deaf community in my area. I've tried learning online, but I really don't understand the grammar of ASL just by trying to learn on my own.

I'm so emotionally drained and scared. I feel lost and I'm not really sure what to do at this point. While I can still hear well enough to interact in most day to day activities, I don't know how much longer that will be true.
 
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