Adjustment to late onset deafness

I had both the gradual decline and then the sudden cut off from my hearing loss. Explanation is: Gradual loss from moderate to severe, but still able to hear with HA's, but then it totally cut off like switching off the light switch. For me, the sudden drop off was easier to deal with. I could just tell people that I am total deaf and explain and then there's not usually a problem, with my HA's, there was always a problem with the decline and people not understanding why it kept getting worse.
 
I'm curious if any ADers are planning to attend ALDAcon in Colorado Springs? It's the Association of Late Deafened Adults; for those still adjusting and for those wanting to learn more, it's a great opportunity to network with other late-deafened folks. And communication is no barrier; their philosophy is "whatever works". Hope to see some of you there. :)
ALDAcon 2010
 
DeafDoc1 said:
I'm curious if any ADers are planning to attend ALDAcon in Colorado Springs? It's the Association of Late Deafened Adults; for those still adjusting and for those wanting to learn more, it's a great opportunity to network with other late-deafened folks. And communication is no barrier; their philosophy is "whatever works". Hope to see some of you there. :)
ALDAcon 2010
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I like that philosophy ;) I live too far away though. Maybe if I had a bunch of money! :giggle:
 
DeafDoc1 said:
I'm curious if any ADers are planning to attend ALDAcon in Colorado Springs? It's the Association of Late Deafened Adults; for those still adjusting and for those wanting to learn more, it's a great opportunity to network with other late-deafened folks. And communication is no barrier; their philosophy is "whatever works". Hope to see some of you there. :)
ALDAcon 2010
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Wish I could get away and had the money.
 
Ahhh I just had a day of not "hearing" anything right...... one of my bad days I guess. Seemed like no one wanted to face me to talk and everything sounded like the teacher from "Peanuts" with my hearing aids. And everyone kept giving me looks like "why can't you figure out what I am saying?" I am sure I got half of all conversations wrong. I offended several people and I have no idea what was the problem or how to fix it. I feel like I have an ear infection in both ears with cotton balls on top and no time to go see my ENT in the next umm.... week. Blah. Here's one day I will count on the side of losing hearing all at once would be favorable.
 
By coincidence, my hearing seems always to be at its "best" the day my hearing tests are scheduled, so I don't get the help I need to adapt to how my hearing is most of the time. That seems to be my luck in other areas of my life too. It's almost comical.
 
Being born with no benefit of the use of my left ear and having the ability to hear out of my right ear made it a little difficult when I had complete and sudden loss of hearing in my right ear by the time I reached the age of 23. It took me quite a few year's to really begin to realise how much my loss changed me from that happy go- lucky type personality. I tended to alienate those around me, I began to stay alone as much as possible I simply dreaded going out in public with fear and anxiety if someone I did not know would approach me and try to hold a conversation. I would go to bed every night and think to myself " maybe tomorrow it will come back " its been 10 yrs now and it hasnt come back. I am now more less content with the fact that I will never have natural hearing again and that I am not alone in this walk of life.
 
I have been finding that I'm not as "adjusted" to my late deafness as I thought. I expect too much of myself and still try to compensate too much. Ah well. I am having more and more issues with my speech, but then again, it's been 4 years since I could hear anything. I'm bound to have problems with my speech after a while. I did talk with someone at the Deaf Service Center this morning about it and they explained that it's totally normal. They said a lot of the issues I am having are totally normal given the circumstances I went through during my life. When I get moved, they will connect me with local services and agencies that will help.

I wish I had someplace like this years ago. It's hard to relearn how to do things this late in life, but a timer right now is my best friend. I have a vibrating timer that I wear around my neck while doing laundry and cooking.
 
SerendipityG3A said:
By coincidence, my hearing seems always to be at its "best" the day my hearing tests are scheduled, so I don't get the help I need to adapt to how my hearing is most of the time. That seems to be my luck in other areas of my life too. It's almost comical.
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I meantioned no time to see my ENT because I think he gets how the scheduled ones never work out! He told me not to schedule my next audiogram but to come in on a "bad day" if they were open and I felt those symptoms and they would fit me in and do one. Because he gets how menieres is hit or miss on the audiograms and you can't predict when it will happen. :aw: Wouldn't it be great if all ENT's or Audiologists did that? (of course now I have to have office hours and my timing and symptoms all match up so I can go in! :hmm:)
 
Rubiegem8280 said:
I meantioned no time to see my ENT because I think he gets how the scheduled ones never work out! He told me not to schedule my next audiogram but to come in on a "bad day" if they were open and I felt those symptoms and they would fit me in and do one. Because he gets how menieres is hit or miss on the audiograms and you can't predict when it will happen. :aw: Wouldn't it be great if all ENT's or Audiologists did that? (of course now I have to have office hours and my timing and symptoms all match up so I can go in! :hmm:)
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That would be great! My ENT seems so so busy all the time though, but it's probably his fault for taking 3 week vacations twice a week.
 
Saturday would have been the right day to see mine but of course they are closed weekends! COuld barely stand up or sit up for that matter..... the room spun the whole day! How I kept anything in was a miracle.......
 
Rubiegem8280 said:
Saturday would have been the right day to see mine but of course they are closed weekends! COuld barely stand up or sit up for that matter..... the room spun the whole day! How I kept anything in was a miracle.......
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How are you doing? Did you get to see a neurotologist yet? I did get diagnosed by three doctors as having Meniere's. So far, nothing is working. What have they given you?
 
Hollykins1 said:
How are you doing? Did you get to see a neurotologist yet? I did get diagnosed by three doctors as having Meniere's. So far, nothing is working. What have they given you?
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No neurotologist yet. Not sure there is one up here. My ENT has put cochlear hydrops as a formal dx for me without them and sent it to my insurance and my primary, and is working on the paperwork to back it. He wants to start hydochlorothiazide (again since I was on it before) but I am not sure having been on it once for over 2 years. He says a different dose may make the difference. I am just on so much stuff already..... I did do the allergy testing and am trying to help reduce those trigger possibilies. Claritin is not doing enough I am sure. So starting there.
 
Are there any tests that can show if you if your hearing loss will increase over time?
 
inmate23 said:
Are there any tests that can show if you if your hearing loss will increase over time?
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If you don't have Meniere's disease, I think the way they do it is test you once a year, and if you have a trend of hearing loss, they expect the trend to continue.

If you do have Meniere's disease, they try to test you periodically, but the trend is hidden behind fluctuations. The way I understand it though, a diagnosis of Meniere's disease is itself a guarantee that your average hearing will deminish over time.
 
I have Meniere's and my hearing has decreased. However, not all people with Meniere's lose all their hearing, but most tend to lose some. Serendipity is correct, it generally fluctuates making it hard to accurately measure true hearing loss levels.
 
I think I am adjusting well, the folks around me are not. (haha) It is still a learning experience. Maybe those who are born deaf learn to cope as they grow up. We who are late deaf have to learn now. It is just different. We grieve, we accept, we learn and we learn to cope. I now enjoy, yes, enjoy my deafness. It is fun to learn asl, make new friends, find ways to cope and communicate. Learn ways to handle the oddball folks who are rude, prejudiced or just uneducated, even mean. I consider some online friends that I have met to be true friends. KristinaB, Bottesini, Annieboo and others are such nice folks and so helpful. It is good to have others to learn from and to share with. I have learned a lot from my friends here. Jillio for one has been so supportive for us all. I try to look at what I have gained rather than what I lost. We must all use our own methods to help ourselves. It works for me, and learn what helps others. The best thing yet has been to make Deaf friends. I still have some hearing friends too. See ya soon.
 
I wish people in my personal life would quit doing things like telling me every day that they wish I could hear this or that and asking me if I can heard something or asking me what something sounds like to me. And when will I stop being a novelty? I've come to the point where the hearing people in my live pretty much treat me like I died, but when they do pay attention to me, they're asking me how I can do things without hearing, like how can I watch TV and read captions at the same time, and my mom's still convinced it's illegal for me to drive deaf. I try to make deaf friends, but I always end up offending them somehow. I've slacked off a lot on learning sign because I have nobody to sign with. I like to sign, but signing to myself isn't why I started learning it.

I have good days and bad days. I guess today is a bad day. I'm fine with being deaf. It's just the way I'm treated in the social world that I have a problem with. I think if you start prying, you'll find that I've quite effectively burned all my bridges, so I'm stuck. No job, no money, no credit, no financial aid elligibility. What that has to do with being deaf is I can't go move to a place where I'll find more deaf people, and I can't go off to a deaf school somewhere. I gotta fix this somehow. I know it's possible, and I'm not all bent out of shape pulling my hair out or anything, so I think it's just gonna take more thought. I wish I knew what I was thinking about.
 
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