Adjustment to late onset deafness

[sallylou]

I got a new audi. She says that my hearing loss must be retrocochlear. My genetic mutation is damaging my nerves. I have "perceptive hearing loss" (whatever that is). Hearing aids are not very helpful and recruitment limits the range of hearing aid use. My husband can tell that I'm struggling. He's always so patient and I appreciate that.

I'm doing well with ASL. My hubby is going to take ASL classes this fall at the deaf center. He's been going with me to ASL socials and deaf events so he's comfortable with the deaf community. He's beginning to pick up signs. Like LDNanna said, the positive side of my experience is making new friends.


Inmate23, I remember that you're considering genetic testing. If your hearing loss is genetic, you may learn about the typical progression for your mutation. There are no specific tests that can predict the course of your hearing loss. Be aware that genetic testing is limited and my not identify a specific genetic mutation. I read that scientists have not been studying late onset progressive SNL (they tend to focus on profound congenital deafness). Scientists have identified genes that cause late onset deafness but the functional cause is not clear. Bottom line is that you may not get any answers.

I giggled when I wrote about mutations because I realized that I'm a mutant. It would have been way cooler is my mutation gave me a super power like flying. lol

 

[inmate23]

Inmate23, I remember that you're considering genetic testing. If your hearing loss is genetic, you may learn about the typical progression for your mutation. There are no specific tests that can predict the course of your hearing loss. Be aware that genetic testing is limited and my not identify a specific genetic mutation. I read that scientists have not been studying late onset progressive SNL (they tend to focus on profound congenital deafness). Scientists have identified genes that cause late onset deafness but the functional cause is not clear. Bottom line is that you may not get any answers.

I giggled when I wrote about mutations because I realized that I'm a mutant. It would have been way cooler is my mutation gave me a super power like flying. lol

ok well now the hospital are being dumbdumbs and because i have been classed as "semi urgent" i wont get an appointment at the hospital but have to make an appointment with private professionals who dont talk to each other. but im wondering if my gp can coordinate this

flying would be WAY cooler than losing my sight and vision

 

[Deaffy]

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.

I to have felt this also. It's not easy to adjust to losing ones sense of hearing. It's really hard to deal with people you know and trust when all they do is treat you like that. But they just dont really grasp how it affects you and they dont understand what its like to be deaf. I wish you the best in your journey through this all. LIfe can throw some pretty mean curve balls at us all ( deaf or hearing) we just got to learn how to roll with it and make the best of our everyday lives. Good luck and best wishes to you!

 

[springtime]

I have a funny story to share-last week, I was home on vacation (we did stuff locally) and I often forgot to wear my hearing aid. No biggie, my kids are loud enough LOL. Well, Sunday afternoon, I took it out to nap, and neglected to put it back in. We then left to go eat out.

We ended up at a great burger place that is very noisy, with backround music and an open cooking area. I thought to myself 'uh oh' knowing I had to order for all of us-we are 7 people and dh just doesn't like to do that stuff, he gets all confused. So, I noticed that the cashier's register has a screen the customer could see too, which was great so I could monitor what I tried to order-I would llikely not understand whatever the cashier said to me.

I placed our long order, and then ordered drinks-we knew both the cashiers in the place, and one said something to me in passing, I did the 'nod and smile' thing because all I heard was mmmmrrrrrrmmmrrrrrrrrr, and repeated my drink order to the cashier, because I didn't see them on the screen. She then ssaid something like 'you're counting on cheese' but of course that wasn't it-but I couldn't hear her so I nodded, smiled and repeated my drink order again, at which point she reached back and handed me the cups (you fill your own).

We went and ate-it was good. In the car after, I looked at the receipt and noticed that we weren't charged for drinks. Ds pipes up and said, didn't you hear them both tell you they comped the drinks? (not counting on cheese, lol) Um. NO, I would have said thank you!!! Then DH says, yeah they said that. Hello-clue me in? I was mortified that I didn't thank them-these young people are friends of our family (they are allowed to do that in their job). I said to dh and ds-couldn't have you said something since I clearly missed that part of the transaction???

I told ds, text them right now and thank them for me and explain why I didn't react. I was embarassed, and told dh, if I miss something, clue me in ok? I also told him next time I forget my HA, he gets to order, if we're out.

 

[LDNanna]

Sallylou, I am glad your classes are going well and that your husband will go too. Sadly, mine is entrenched in his tv. Still.

DeafAnnieBoo has moved here. Being young and energetic and adorable, she started a monthly Deaf Coffee. Wow. There was 11 total people. My husband did come later but did not join us. Sigh. Anyway, we all had a great time. We told jokes, discussed everything and voted to do this every month at the same place.

I think we will have more people next month since school will be back in session.

VP me sometime or skype me, I miss you.

 

[SimonJ]

I told ds, text them right now and thank them for me and explain why I didn't react. I was embarassed, and told dh, if I miss something, clue me in ok? I also told him next time I forget my HA, he gets to order, if we're out.

Holy cow, I would have chickened out, it's hard enough trying to lip read without it being someone who says the same phrase all day. You're a star!

I would have either gone home and got the aids, just gone home or refused to be the one doing the ordering.

 

[aussierick]

HI I'm Richard and I am deaf in my right ear and on my last hearing test I have 40% hearing in my left ear. Unfortunately after having a summer cold that had been reduced dramatically.

I do have a Phonak Nadia 1 SP hearing aid but after that cold I can barely understand anyone who talks to me, but funny enough I can hear the TV clearly. I just had my hearing aid repaired by Phonak so there shouldn't be any problems with it.

I can't use the phone or cell phone anymore as I can't understand what is being said. I am 48 years old and even tho I have been deaf in my right ear since birth I have had some problems growing up with it, but I managed to live a normal life until 18 months ago.

Now apart from a few problems here and there growing up I develop tinnitus at 18 in my left ear and had it ever since.

In Feb, 2009 I flew home to Sydney from the US and 2 weeks after I arrived I noticed my tinnitus going nuts and my hearing in my left ear had been dramatically reduced.
I had to go on Unemployment in Sydney, and have what they call a "Job Capacity Assessment" to be referred to a Vocation Rehabilitation provider, which in my case was CRS Australia.

Once that was done and the referral was made. I was able to get a Phonak Nadia 1 SP and a Croslink paid for by the Australian Government's Department of Hearing Services.
Once I got the hearing aid and the Croslink I began working again as forklift driver in Sydney.

But 4 months after getting the hearing aid I began to notice my hearing was getting worse. I had the hearing aid repaired and cleaned after 6 months and again after 12 months. Luckily for me I still have a warranty on the aids for 2 years after the purchase.

Now I'm back in the US with my wife and I think I need a new hearing aid or a CI. But right now, we are very broke and no insurance and needless to say I am shit scared what is going to happen in the future.

I need to be working to get our finances back on track again, that is looking very impossible right now. and I have really no clue what to do now.

 

[springtime]

Holy cow, I would have chickened out, it's hard enough trying to lip read without it being someone who says the same phrase all day. You're a star!

I would have either gone home and got the aids, just gone home or refused to be the one doing the ordering.

I think for me, I'm not necessarily 100% 'on board' with this whole hearing loss thing like, I try to 'get by' but the reality is, I should admit when I need help, and typically I won't...I should have had DH do the ordering. I also need to get in a better habit of putting in the HA! On work days, I always remember-but on Sundays and my day off, I often forget. I should put a note on the bathroom mirror to remind myself.

 

[SimonJ]

I should put a note on the bathroom mirror to remind myself.

I have reached the ground floor before now (even on work days) before realising I have forgotten my HA's. The doors opening silently gives it away. Of course once outside it becomes obvious as I can't hear much at all without them.

It's taken me years to acknowledge and then more still to accept I am more deaf than hearing and as such cannot do some things like I used to.

I can order food, but only if all goes to plan, when they didn't have any muffins and asked about alternatives I was lost, and that's with the HA's on. :-(

 

[kyom]

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[Rubiegem8280]

My adjusstment to HA's has to deal with the constant (so it seems) need to have the filter cleaned out..... it drives me nuts. esp my right one. Seems it goes "dead" all the time cause the filter has a spec of dust I can't see in it. And with my schedule with my daughter I can't just go to my audio all the time.... I do have a dry'n'store I use nearly nightly but still have the problem. The other issue is wearing hats..... I guess the other day I knocked my ear mold slightly out of place and didn't feel it till a couple hours later when I had some skin breakdown from there the tubing meets the hearing aid and couldn't wear it for 2 days to let it heal! And with my meneires if one aid isn't working.... I feel even more off kilter with my balance. With the number of episodes I have had this summer and spring I definitely am ready to talk to my ENT about starting to treat it.

 

[Hollykins1]

I don't have hearing aids, but I do have a high number of vertigo episodes. I go for my first dex injection tomorrow. I hope it's not too painful and even if it is - it will be worth it IF it works...even a little.

I'd encourage you to get to that ENT about treating it!

 

[KristinaB]

I will still try to learn ASL, but I am giving up socialization and other things. Am not comfortable out of the house and will just stay put as much as I can. Think I will become more and more like Botti in that regard. I can handle being out with family, but not alone.

 

[Rubiegem8280]

I don't have hearing aids, but I do have a high number of vertigo episodes. I go for my first dex injection tomorrow. I hope it's not too painful and even if it is - it will be worth it IF it works...even a little.

I'd encourage you to get to that ENT about treating it!

Good luck tomorrow! You will have to let us know how it goes! Anything to make the world a little less tipsy!

I am not sure where to start with my treatments... I am already having nearly no sodium. And did HCTZ for two years before we knew I had this.... with symptoms still. So I think we should skip that one. Not sure what would be next though....

 

[Rubiegem8280]

I will still try to learn ASL, but I am giving up socialization and other things. Am not comfortable out of the house and will just stay put as much as I can. Think I will become more and more like Botti in that regard. I can handle being out with family, but not alone.

I wish somedays I had that option...... but I miss life too. I am getting a lot of feed back from my family for being on my computer to much already! I have to force myself to interact with people..... getting harder and harder, hearing wise. Thankfully at least at church, my pastor now gives me the whole sermon notes so I can read along and not have to read lips or try to keep up.That helps a lot, and most people know about my hearing now so they are good about making sure to talk right to me and not around me.

Are there groups locally you could get into for asl to learn and practice?

 

[KristinaB]

I wish somedays I had that option...... but I miss life too. I am getting a lot of feed back from my family for being on my computer to much already! I have to force myself to interact with people..... getting harder and harder, hearing wise. Thankfully at least at church, my pastor now gives me the whole sermon notes so I can read along and not have to read lips or try to keep up.That helps a lot, and most people know about my hearing now so they are good about making sure to talk right to me and not around me.

Are there groups locally you could get into for asl to learn and practice?

There is the local deaf club, but with my family, I don't get the time to go. I home school my 2 teenagers, am driver for my mother in law and primary caretaker for my mother. Hubby works full time and I don't get to see him very often. The most I have been able to do so far is the once a month deaf movie night. Besides, the deaf club doesn't want to help me learn ASL, they want me to know it already.

 

[Rubiegem8280]

There is the local deaf club, but with my family, I don't get the time to go. I home school my 2 teenagers, am driver for my mother in law and primary caretaker for my mother. Hubby works full time and I don't get to see him very often. The most I have been able to do so far is the once a month deaf movie night. Besides, the deaf club doesn't want to help me learn ASL, they want me to know it already.

Wow, busy schedule. There isn't anyone at the club learning as well? Bummer. I had a group I ran into that was similar back in VA when we lived there. Had to know sign or I wasn't really welcome, yet. No oral deaf in the group. Or at least it was not encouraged within the outtings. Do you do field trips with the teenagers? Could you do ASL as a class with them homeschooling? As a primary caretaker, have you looked into adult respite? It might help you get some time to have a hobby or something you can do beyond having the communication limitations.

I am a single mom of a daughter on the Autism spectrum and so full time caregiver to her too. I get her therapies and her school (part time) and stuff, and then my appts are my only time off basically too. So I have to figure me time into that pattern. But respite helps! You may qualify.

 

[KristinaB]

Do you do field trips with the teenagers? Could you do ASL as a class with them homeschooling? As a primary caretaker, have you looked into adult respite? It might help you get some time to have a hobby or something you can do beyond having the communication limitations.

I am a single mom of a daughter on the Autism spectrum and so full time caregiver to her too. I get her therapies and her school (part time) and stuff, and then my appts are my only time off basically too. So I have to figure me time into that pattern. But respite helps! You may qualify.

We do family outings once in a while, but not so much field trips. Since they are older, they aren't interested much and since I'm not part of any home school group or co-op, I don't get the home school group discount.

As far as having a class for ASL, they aren't too interested. I have tried for the last 4 years. Daughter has memory retentions problems, son has the "I don't wanna know" attitude and mother has arthritis and dementia, hubby has arthritis and can't bend his fingers and MIL thinks it's a waste of time. I do get a lot me "me" time, but it's here at home. I have been working online with ASL lessons at • ASL • American Sign Language.

Mom doesn't qualify for the respite care since she is not quite that bad off. She has Cirrhosis of the liver from Hepatitis C (blood transfusion) and ICU-induced dementia. She has good moments and bad moments, and the bad or off moments are occurring more often. She is taking meds for her dementia, but the cirrhosis eats it up before it gets to helping her. We just can't leave her alone.

 

[kml]

Hello all,

I posted an intro but will recap briefly here:

I'm 39 and have had a very slight hearing loss for nearly 20 years. In the last 5 years it has degraded rapidly. I have resisted HAs as hearing loss is a career ender for me. Being a little more than 2 years away from being eligible to retire I was trying to "tough it out". I've finally given in and will receive HAs for both ears in a few weeks (went with the ReSound live 9s).

One of the big reasons I've decided to "risk" getting help for my hearing is that my communication has been impaired to the point that it was affecting my job. I work with new people every week . The nature of my position makes it an adversarial relationship to begin with so my inability to understand what is being said has really started to be an issue. Not laughing at jokes because you didn't hear them, smiling and nodding when it was actually a question, etc. I'm sure most of you know what I'm talking about!

I've already been helped greatly by this site. It's always good to know others have been through similar situations and to share some of the unique experiences that come with living in a more quiet world than most.

I appreciate those here that share their lives to help others grow and hope that I can contribute in some small way.

Kelly

 

[springtime]

Hello!

I understand what you're talking about. For me, work was the tipping point in even deciding to see an ENT to start with.

I think you'll probably end up really happy with the HA's. They take time though-it took me a good month to get used to it.

Hope all goes well!

Hello all,

I posted an intro but will recap briefly here:

I'm 39 and have had a very slight hearing loss for nearly 20 years. In the last 5 years it has degraded rapidly. I have resisted HAs as hearing loss is a career ender for me. Being a little more than 2 years away from being eligible to retire I was trying to "tough it out". I've finally given in and will receive HAs for both ears in a few weeks (went with the ReSound live 9s).

One of the big reasons I've decided to "risk" getting help for my hearing is that my communication has been impaired to the point that it was affecting my job. I work with new people every week . The nature of my position makes it an adversarial relationship to begin with so my inability to understand what is being said has really started to be an issue. Not laughing at jokes because you didn't hear them, smiling and nodding when it was actually a question, etc. I'm sure most of you know what I'm talking about!

I've already been helped greatly by this site. It's always good to know others have been through similar situations and to share some of the unique experiences that come with living in a more quiet world than most.

I appreciate those here that share their lives to help others grow and hope that I can contribute in some small way.

Kelly