Capd

[Lazarus404]

Hi All,

I feel I need to write this because I feel liberated, relieved (strangely) and altogether normal, having self diagnosed myself (with the help of a forum member) that I have CAPD / APD.

For years, now, I've been living with all the symptoms of CAPD and never knew why. These included:

Difficulty hearing in noisy situations
Difficulty following long conversations
Difficulty hearing conversations on the telephone (I tend to complain about a bad line a lot, even when I know the line is fine)
Difficulty learning a foreign language or challenging vocabulary words (got an F in French at school, even though I did exceptionally in other subjects)
Difficulty remembering spoken information (affects my job a LOT, though I get by through requesting meeting minutes and written task lists)
Difficulty taking notes
Difficulty maintaining focus on an activity if other sounds are present and I'm easily distracted by other sounds in the environment
Difficulty with organisational skills
Difficulty in directing, sustaining, or dividing attention
Difficulty processing nonverbal information

I took the list above from a CAPD help site, but added notes. There are symptoms that I don't suffer from, though, such as difficulty reading and spelling, but I think that's because I have exceptional visual and puzzle solving skills and have always "seen" words and pictures and patterns in my head. Also, I've always had an appreciation for music, but I must listen to it via noise blocking earphones or in a quiet room, else I'll simply "not hear" music, and find I'm at track eight and not remembering listening to track 2 through 7. Also, I have numerous symptoms that I've seen linked to CAPD that don't seem common to the disorder. For example, my wife will often say it's like living with someone who's autistic, and that I'm often like a robot, because I don't feel other peoples emotion. Fact is, I "seem" autistic because I'm locked away in my own brain, unable to respond to audible stimuli, and I do feel peoples emotions, when I'm told specifically that those are the emotions they're feeling. I simply can't tell from the sound or pitch of a persons voice.

At school, I was never able to listen to the teacher talking. I got as far as the page in a text book that I was to turn to, then closed off. I learned by reading what was in front of me, not from the teacher themselves. In this way, I think I would have been better being home-schooled. At college and university, I simply couldn't stand sitting in a lecture theatre. I'd fall asleep every time, because I was in a dark and quiet place; I couldn't focus on the lecturer, so my brain couldn't stay engaged. Stay like that for more than fifteen minutes, and I'd nod off.

Now I'm married and my relationship has always been difficult. My wife is blind, so she uses her voice to communicate more than anything else, but with my CAPD symptoms (I'll leave it at that til I'm professionally diagnosed), I've never been receptive, so she's always felt closed off. In the reverse direction, I'm unable to talk clearly (I mumble everything, though that's part of CAPD I've read), and I tend to communicate more physically, using lots of hand gestures and facial expressions, but she's unable to see them.

Now I know I'm not crazy, mildly autistic (yes, I had thought it was a possibility!), or sub-human (emotionally, conversationally and awareness), I can finally get on with life, in the knowledge that I can finally get proof and professionally detailed descriptions of what it's like to be me, so that my wife can understand, and we can finally discover ways to be together without my disorder being the cause of our previously inevitable break up.

Since reading up on CAPD today and then out loud to my wife, both of us have realized that after all this time, I am not simply "not listening". We have both been recalling occurrences in the past when events have seemed like I acted stupidly, misinterpreted someone's remarks or shown complete disregard for someone. I have been told I'm rude, I have a terrible memory, I have no common sense and I'm unfeeling. I have always known that this couldn't be due to a lack of intelligence, as I have written a 600 page book on professional computer programming, I write articles for an international IT magazine, I'm one of the top in my field and known globally, can solve logical puzzles much faster than most and I have tested with an IQ of over 155 by MENSA, but my wife has always put this down to me being more like a robot, and that intelligent geeks like me are often devoid of emotion and common sense. Now, though, I finally have something I can attribute those deficiencies to. I know what it is that is wrong with me, and with the help of the research carried out by those who already know of this condition, I can finally find ways to make my like more tolerable, and my relationships with people more possible.

Actually, that attributes something else, now that I think about it. I have no friends. That's not to say I'm not a likable person (I sure hope I am), but I avoid personal communication as much as possible. I avoid people wherever possible, mainly because I cannot "focus" on them and feel awkward talking to others. I feel I can express myself just fine (though that might be thinking one thing and others seeing something else entirely), but I'm not a good listener, even though I do try to listen. As such, I find having no friends makes life easier, as I have no excuses to make. When someone asks why I didn't turn up at a specific place at a set time, I don't have to explain why I forgot all about it, or usually why I didn't even know we'd even arranged such an event. If someone is talking directly to me, I don't have to say at the end of their long speech that I didn't "take in" a word of what they said.

Anyway, now I know what I have, it would be good to hear about others with this condition and how they deal with the above issues in their life. If I know what the general solution to a particular symptom is, then I might be able to better deal with it in my own life, and I might be able to live life more fully.

Also, can you guys who know please tell me if this is deemed being "deaf"? I tell my wife I'm deaf all the time, before knowing what it was that's wrong with me, but saying I'm deaf doesn't feel right when most of the time I hear sounds fine. It seems a complete contradiction in terms, really. How else do you tell someone you can't hear, while at the same time being able to hear a pin drop in a quiet room? What's the global comment to others who don't know what CAPD is, when you don't want to have to spend ages explaining what the condition entails? Will I have to tick YES to being deaf on formal documents? I guess these questions are as important as dealing with the condition.

Thanks,
Lee

 

[Hear Again]

Lazarus,

If you think you have CAPD, you might want to visit an audi who specializes in this disorder to receive an accurate diagnosis.

As for your question about whether or not to identify yourself as deaf, that is completely up to you. I know several people who have CAPD that call themselves hard of hearing, so it depends on the person in question as to how they decide to label themselves.

 

[Lazarus404]

Yes, I'll have to find someone who understands the condition. I've already been tested but that was for the ear mechanics, and would not have uncovered the CAPD. I also described my symptoms to the consultant, and he recommended that a hearing aid might help. Having read that hearing aids don't actually help with CAPD, I'm sure he doesn't understand the condition...

I normally label myself deaf to my wife when she complains that I haven't "heard" something, but I'm not sure how I'd label myself to others outside the home. I normally avoid the topic, or leave all the talking to my wife. It was always better to appear rude and ignorant than say something potentially stupid and embarrass myself.

 

[Hear Again]

Yes, I'll have to find someone who understands the condition. I've already been tested but that was for the ear mechanics, and would not have uncovered the CAPD. I also described my symptoms to the consultant, and he recommended that a hearing aid might help. Having read that hearing aids don't actually help with CAPD, I'm sure he doesn't understand the condition...

I normally label myself deaf to my wife when she complains that I haven't "heard" something, but I'm not sure how I'd label myself to others outside the home. I normally avoid the topic, or leave all the talking to my wife. It was always better to appear rude and ignorant than say something potentially stupid and embarrass myself.

Some people with CAPD are helped with FM systems, so if you are diagnosed with this, you may want to ask the audi you see for more information about them.

How comfortable would you feel calling yourself hard of hearing? This is what I always did when I still had enough hearing to understand speech with hearing aids.

I think people have a better understanding of what is meant by the term hard of hearing rather than deaf since many consider someone who calls themselves deaf to have no residual hearing.

 

[Lazarus404]

Yes, my wife has a similar problem. She's registered blind, not visually impaired. With blind being the stronger of the two, she still has some residual sight. It's at least enough to not walk into things. However, where she's been blind so long, people assume she's fully sighted, so don't believe her when she tells them she's blind, while others think she cannot be blind if she has some vision remaining.

What does an FM do? Is it something I wear on the ear, like a hearing aid?

 

[Hear Again]

Yes, my wife has a similar problem. She's registered blind, not visually impaired. With blind being the stronger of the two, she still has some residual sight. It's at least enough to not walk into things. However, where she's been blind so long, people assume she's fully sighted, so don't believe her when she tells them she's blind, while others think she cannot be blind if she has some vision remaining.

What does an FM do? Is it something I wear on the ear, like a hearing aid?

I know what your wife is going through. I have the same thing happen to me even though I'm totally blind. People assume that if I don't run into things or trip over a curb, I can't be blind.

An FM system amplifies sound and allows a person to hear speech in background noise. Some FM systems consist of a very small handheld transmitter. The FM system blocks out background noise and brings speech or other sounds directly into your ear.

Other FM systems like my Comtek consist of a separate transmitter, receiver and microphone. The person I want to hear wears the transmitter and microphone while I wear the receiver. I have an audio cord in which one end plugs into the receiver and the other into my CI's BTE speech processor. One of the things I love about my FM system is how well it allows me to hear in background noise.

If you'd like more information about the Comtek FM system I use, you can visit:

COMTEK Communications Technology - AT-216 Digitally Synthesized Wireless Auditory Assistance Kit

 

[Lazarus404]

I see. I can see how this would help, but I don't think it would help completely. Hearing what a person has said is only part of the problem; the other part is converting those words to meaning. For example, even when I clearly "hear" what my wife says to me, I often chew on her comments for several seconds before I understand "what" she said. It's kinda like looking at some obscure silhouette. One might see the silhouette completely, and sharply, but the subject providing the silhouette might not become apparent til the brain has had time to reason it out. Once it is discovered, you can then see it every time. Also, the brain might interpret is wrong, which often happens to me. She says something, I hear something else, and I interpret something else again! Man, just writing this down makes me realize what my wife puts up with It must certainly be frustrating for her. At least I don't know I've got it wrong til she finds out I'm not carried out her request quite how she expected it

Still, at least having this device will mean I have all the words given to me off the bat, so I won't get it wrong so often

Thanks for the info.

 

[Hear Again]

You're welcome.

Have you thought about learning ASL? That could be another helpful alternative.

 

[Bottesini]

Auditory integration training is also used to help CAPD.

 

[Lazarus404]

You're welcome.

Have you thought about learning ASL? That could be another helpful alternative.

Yes, I think ASL would be beneficial indeed, especially long term. I've noticed my CAPD is getting worse with age. It was bad at school, it's far worse now. I don't think my job helps, as I work twelve hour days sat in front of a computer and hardly speak to people. Everything is visual.

@Bottesini: This makes your suggestion difficult, as a) I have little time to do any form of sensory training (I don't even have time to do what I love - painting), and b) I rarely have any time to put it into practice. I guess it makes learning ASL difficult, too, huh?

I know these are things I should do to ease myself of this disability, but I'm at the height of my career, and it's more important that I provide for my children while I can. My children are at private schools, and keeping them there isn't cheap. Also, my wife and I have a dream of saving and moving to a country promoting a slower pace of life, so I have to work like mad now to afford it

The main thing for me is, knowing I at least have the symptoms of CAPD means I can stop thinking I'm stupid, unfeeling, losing my marbles, or just plain ignorant, and I can start making tried and tested adjustments to my life. I can also alert people to the fact, rather than let them be subject to one of my non-listening conversations.

Thanks again, guys.

 

[jillio]

Yes, I'll have to find someone who understands the condition. I've already been tested but that was for the ear mechanics, and would not have uncovered the CAPD. I also described my symptoms to the consultant, and he recommended that a hearing aid might help. Having read that hearing aids don't actually help with CAPD, I'm sure he doesn't understand the condition...

I normally label myself deaf to my wife when she complains that I haven't "heard" something, but I'm not sure how I'd label myself to others outside the home. I normally avoid the topic, or leave all the talking to my wife. It was always better to appear rude and ignorant than say something potentially stupid and embarrass myself.

I would suggest that you visit a neurologist first for an official diagnosis, as CAPD is actually a neurological processing disorder. As a consequence, most audis have heard about it when they were in school, but don't have much experience with helping to treat it. The neurologist that diagnoses you can refer you to an audi that is familiar with treatment of CAPD.

BTW, your description certainly sounds like a case of CAPD.

 

[defgrl]

Hey, I "hear" ya!

I have been dx'ed with (C) APD TWICE. I used an ALD, but it only helped some. I have also been dx'ed with SN hearing loss, so I don't know which one I have. Or both? I dunno. People can "flunk" CANS tests for various reasons. A hearing aid helps me SOME (makes things LOUDER, but only sometimes clearer), as does an HAC LOUD cell phone. So does using SIGN LANGUAGE in its various forms. I know for sure that I have Asperger's Syndrome and also Tourette's. I know there are "auditory training" programs, but I have never tried them. I feel most comfortable calling myself "HOH." I hope things work out.

defgrl

 

[November Gypsy]

I bet it feels amazing to have an idea of what is going on after all these years. I was far more forunate in that area, and was diagnosed as quite a small child. I have many of the symptoms you listed, and know that it is not easy to live with, but that there are things that can be done for it. It's funny because when I was diagnosed as a child my parents had had me tested for hearing loss, now, years down the road, I am actually loosing my hearing. Ah well. At least I never was good at listening. *Grins* If you ever want to talk more about it, or get some support, feel free to PM me.