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How many LDers

Submitted by an LD OnLine user on

Does any one know how many people there are with cognitive disabilities? Are there any lobbyists for our cause greasing palms? Are we a viable voting force?

Submitted by Anonymous on Thu, 12/12/2002 - 1:21 PM

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Hi Ball,

I think you know the answer to the second and third questions? I was going to look into the possibility of starting an adult LD group in my area but I have gotten derailed by so many things which I don’t want to bore you all with.

The current LD organizations seem to be caring folks but as I always say, actions speak louder than words and their actions tell me that adults are an afterthought even if that isn’t their intention. But if you think about it, in the disability world in general, the kids always get alot more services than the adults so I guess we shouldn’t take it personally. Yeah, right!

The only way we are going to become viable in my opinion is to organize ourselves into groups and also start speaking up individually at every opportunity. On another list, I think I was able to do that with folks who do have some influence. Locally, I received a notice from my area’s commission on people with disabilities and I definitely plan on stating my opinion.

I would also urge all of you to write to shows like Misunderstood Minds, which did a documentary earlier this year on LD issues in kids, and demand that adults also be portrayed. Think about this folks, the adult boards on LDonline didn’t pop up because we were quiet, they popped up because we were persistent in asking for them.

Ball, I am not sure any of these actions will translate into lobbyists greasing palms on our behalf. Heck, there seem to be millons of disability groups in general but they sure as heck have been quiet. Maybe that is too strong a statement but it sure seems that way. So even if we do somehow become more viable, unless we’re prepared to be as active politically as folks were in getting the ADA passed, or the Gallaudet students were in demanding actions like a president who is deaf, we’re kind of wasting our time.

Actually, we did have a politician with LD, Paul Wellstone, who did alot of good things overall but unfortunately, he was killed in a plane crash in Minnesota.

PT

Submitted by Anonymous on Thu, 12/12/2002 - 4:48 PM

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PT,

Ireally think what is needed is a simple commonsense solution. Most of the people here can tell you that they have recieved next to no help and when they ask for help the usually end up getting lots of abuse.

The parasites that are there to “help” the disabled seem lousy at help and great at exploiting their situation for $$$$$$$$$$$$$$$$. Thats the name of the game.

In my area the number of orgs for helping the disabled is laughable. I think there are more people employed to “help” them than there are disabled people. We have an org call RCIL which has a serious lack of testosterone and functioning testicles. They have a man at the top and a bunch of bitches who are second in command followed by men who are very light in the loafers and at the bottom are real men in wheel chairs who are used as their poster boys. It is disgusting.

At the risk of sounding male chauvinistic it seems to me when you have a whole lotta hens and impotent roosters
the hens don’t get laid enough except by each other and neither do the eggs and the hens are too busy fighting over the inept rooster that none of the eggs ever hatch. I speak from experience. I think RCIL is a scam most of what they pretend to do is not needed and what they do the disabled could do for them selves. Like other orgs that pretend to help the disabled they have no accountability. They just have to look good on the surface.

Submitted by Anonymous on Thu, 12/12/2002 - 5:19 PM

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Ball,

As a strong feminist, I don’t think your analogy is chauvanistic at all as it is right on target. But the question is what can we do about the situation? How do I get a job right now that suits my talents? Calling agencies a bunch of names is not helping me right now. No one is anwering that question and even the books that Dale Brown wrote, who has a column on this board, are too vague.

Hopefully, my long term future is in AT but what about now? Am I doomed to clerical jobs that are either too boring or too hard?

Anyway, maybe I need to quit visiting these boards because all we are doing is rehashing the same old stuff and meanwhile, I am getting no answers for my problems. Sorry folks, I am about to go on an interview for a job I can’t do, an administrative assistant and that has put me in a very bad mood. I should know better but when you’re unemployed, it is hard to turn down an itnerview.

Ball, you’re a bright person, use that smarts in other ways instead of bashing agencies. I am guilty of it myself but really, it hasn’t helped.

PT

PT

Submitted by Anonymous on Fri, 12/13/2002 - 4:32 AM

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PT,

I’ve been in a pissy mood lately. Well pissier than usual. I just got the results of my latest neuro psych eval and the results were worse than I anticipated. Actually I was doing the same thing to them taht they do to us. That is labling. However my lables are more accurate for them than their’s are for us.

Actually, I’m not doing so well my neuro psych eval showed among other things that my verbal comprehension is in the 97th percentile but my processing speed is in the 4th percentile. Overall it was revealed that my verbal IQ is in the 82nd percentile and my performance IQ is in the 15th. So I am keenly aware of how much my life is screwed up My abstract reasoning is in the 99th pecentile but my ability to sequence is in the 2nd percentile. What that means is that is some ways mountain gorillas are smarter than me. What that also means is that compared to me in some ways the people running these crooked and inept programs are not as smart as a chicken.

The way this effect me is everyday is an exercise in frustration for me. I can instantly size up a situation but I do not know my left from my right. I am a very frustrated person. I have struggled for years to become good enough to play in bands. I am not thrilled about my level of musicianship but I am proud of how much I achieved even though next to no one appreciates. I never reveal my disability to the musicians I play with. I failed many auditions cause I was slow on the uptake and my head has hung so low that I though it would always stay that way. The only thing that keeps me from being sad all the time is being pissed. As I get older and I see my “manly” physical strength eroding I get angrier. About 18 years ago I reconciled my situation. After beating my head against a brick wall for most of my 20s I decided to take a pragmatic approach to my life and I became a laborer. This medium sized white boy became strong as an ox and tough as nails. My self esteem grew but as luck/god would have it I developed disk herniations in my neck and I spent nearly 12 years in severe chronic pain and the numb nuts doctors offered me no solution. I tried everything but I was sick of being doped up. Finally I hooked up with a doctor who I begged to help me. He sent me to a pain clinic. I told him I had gone that route before and they just jerked me around. He assured me that the doctor at this pain clinic was a miracle worker. He was. Although I am not pain free My suffering is now at a minimum.

I have had too much pain, too many lies, and too much of nothing. I am a jealous, vengeful and rage filled man.

You are right in a way that I should be nice but this toilet of a world is a good place for an obnoxious turd like me. I stopped being nice along time ago. I stopped walking away with my tail between my legs. I stopped apolgizing in advance for being this ugly lump that I am.

It’s funny I actually like the common man a lot and even though I’m white I prefer black people. I think that they are more real overall. They just seem to have a lot more character.

I have a problem with arrogant educated types especially the one who’s education exceeds their inteligence. I will no longer be talked down to by these men that can’t dance nor will I respect these semi impotent soul damaged soft bodied girly men who can’t satisfy their clueless wives.

Submitted by Anonymous on Sat, 12/14/2002 - 4:56 AM

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Hi Ball,

I just want you to know that there is somebody out there that understands.Your disability sounds very similar to mine. I have a 34 point difference between my performance IQ and my verbal IQ. On the report it says that a difference like that occurs in 0.4% of the population. Hey, at least your abstract reasoning is great. My own is super low.I couldn’t find a score for that in the report, but I was told that it is a real deficit. My executive functioning is in the 1st percentile! Can you believe that? You can’t get lower than that!

I am a 44 year old woman and I was only diagnosed about 3 years ago. I always kind of felt that there was something wrong, even as a child. I am glad that I know that I have a cognitive disability, yet knowing the gory details of it all has brought me a lot of pain. When you said that you were in a bad mood because you had just received the results from a psycho-educational evaluation, I identified with you. In fact, my husband was frustrated when I came home from taking a test and burst into tears upon coming in the door.

I was a good student in high school ( but poor in math and science) and somehow made it through college(major-Politics). I feel like I’m smart, but only in certain areas. I feel a real sadness around this disability. I feel dumb so much of the time. I have had a hard time holding a job because companies usually do little or no training( they always SAY their training program is great) and they have no time for somebody who does not catch on immediately. So you know what I’m doing now? I’m cleaning houses for $20/hr. It is actually ideal for someone like me(with LD) because I can go at my own pace with no one looking over my shoulder. Besides, I get a little satisfaction out of hearing my customers praise my work. An office environment is usually not good for me because I have no ability to multi-task.Doesn’t it seem like every job out there today involves multi-tasking?

I am dying to attend law school, something I have wanted all my life. Something always got in the way, and it was usually money. I am studying for the LSAT now. If I get a good score, I will apply for the session that starts in August. It makes me really nervous, as I don’t test well .

It sounds like we have something else in common: low self esteem. I’m going to a therapist now over this. I would recommend that you do the same, provided that you have insurance to cover it. Otherwise, it’s prohibitive.

Good luck to you. And quit thinking that you can’t find a wife. Between 5 and 10% of the population is LD and I would venture to say that most would be married. Try to focus on how smart you are and how nice you are. do things that make you feel good about yourself.

Take care,

Erin

Submitted by Anonymous on Sat, 12/14/2002 - 1:53 PM

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Hi Erin,

Welcome to these boards. As an adult with NLD, it sounds like that is what you have and you might want to visit these boards if you haven’t done so already:

http://www.nldline.com
http://www.nldontheweb.org
http://www.nlda.org

You said:

<>

I know the feeling. You want to know why you can’t function like “normal” people but yet, it really doesn’t provide any answers and only pain.

You also said:
<>

Again, welcome to the club. Everyone says you need to accept your disability and I can understand that. But when it is a big factor in my current job situation, how the heck can you accept something that keeps you unemployed?

You also said:

<>

I had to laugh when a counselor I was working with in the job area (not any more for various reasons) said I needed to find a job that didn’t require this. I wanted to ask this person where I could find such a thing, in Timbuktu?

Actually, if I know what is expected of me and the expectations are quite clear, I can multitask in some situations. But in this rapidly changing economy, situations like what i mentioned just don’t occur.

I am curious, do you get any benefits for your cleaning job or how did you obtain it? I am studying Assistive Technology but need something right now to support myself. I can’t do alot of clerical jobs but that’s practically the only thing I am qualified for if you know what I mean.

Good luck with the LSAT. Just look at it as you’re taking the steps to do what you want to do and this is just one part of that. You’ll do fine.

PT

Submitted by Anonymous on Sat, 12/14/2002 - 4:46 PM

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Erin,
Good luck as well with your LSAT. It’s a good thing I’m not a lawyer I’d sue everybody just because I’m pissed all the time.

I actually have a freind who is a lawyer and he’s a nice guy. I tell him he’s the exception that proves the rule. lol

I tend to like guys like Alan Dershowitz and Jerry Spence but I think Nancy Grace needs a slap. Lawyers haven’t earned their bad reputation by accident. Most of the ones I know are heavy drinkers who blow coke. They are generally arrogant and inthe small town I am from they are above the law. I know 2 that are known wife beaters. I trashed one of their cars one night about 10 years ago. I am a big advocate of do it yourself justice.

There are also book available that teac do it yourself lawyering. I don’t think one need to be that bright to be a good lawyer (good lawyer = oxymoron) a Machevelian nature is the ticket.

I hope you become a lawyer because the profession is lacking people with humility, humanity, honor and integrity. If you become a lawyer perhaps you could advocate for the cognitively challenged. Do your best and study hard.

Submitted by Anonymous on Sat, 12/14/2002 - 6:21 PM

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I have really enjoyed reading all of these posts. Ball, you are so intelligent. I think that you should write a book about your life and experience. I would buy it. I too was diagnosed only 1 year ago. My confusion in my life does make more sense to me now. But, I still find it very frustrating, when my siblings and teachers still don’t believe that I have a learning disability. Because I look so normal, have a lot of charisma and am very articulate. They don’t believe how much I suffer and long long it takes me to learn things. Recently at 40 I decided to go back to school, before I knew I had a LD. It has been hell. Mainly because of the volume of information I need to get through. I’m doing it, but, it has been very hard processing so quickly. I have never been so frustrated in my life, like I am when I get teachers getting mad at me because I don’t pick something up, especially after disclosing that I am a student with a LD.

Right now, I am scared because I’m afraid that my life is going to remain difficult or go down hill. I wonder if I’d be doing better if I was still ignorant of the fact of my LD.

Submitted by Anonymous on Sun, 12/15/2002 - 1:51 AM

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Claire,

What are you studying? Congratulations on returning to school even though it has been difficult for you. Sorry you have had to put up with so much grief.

I am also a middle aged student who returned to school. I am lucky I haven’t had the problems you described as far as professors although I have only had one course. But every one in the department seems quite reasonable so I am keeping my fingers crossed.

I know the feeling about siblings not getting the LD. That unfortunately seems to be very common.

You ask a very good question about whether we are better off knowing about our LD or not. For me personally, I think the answer is yes but I have the same fears as you do. I think I just didn’t understand until recently what it really meant to have LD. Also, maybe I had unrealistic expectations that once I was given this diagnosis, everything would make sense and I would be on my merry way.

I think also because “Driven to Distraction” had just come out when I was diagnosed, I expected similar books to come out regarding LD and that there would be help for adults with LD. Then when I was given the non verbal learning disability dx, I was praying that someone would write a book to counteract all the gloom and doom stuff that was out there. Obviously, lots of disappointments but I have also made some great friends through NLD lists so I have to look at the total picture.

PT

Submitted by Anonymous on Sun, 12/15/2002 - 3:05 AM

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I also admire lawyers who are LD…. Good luck to Erin on trying to pass the LSAT. However, I just cannot admire a lawyer like Dershowitz. He defended O.J. Simpson for one in that murder trial which was a travesty of justice for Nichole and Ron. (2) He is said to have advocated measures against Palestinians which would violate international law. Which as a member of the bar is suprising. I hope you get to be a good lawyer we do need people like you.

Submitted by Anonymous on Sun, 12/15/2002 - 6:40 AM

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Thanks to PT, Ball, Claire, and George for the encouragement around taking the LSAT. It really gave me a lift. I have been subscribing to LD online for months, but for some reason, I never checked out the bulletin board until yesterday.In fact, I’ve never even visited a bulletin board before. I’m not that much into sitting in front of a computer It was a breath of fresh air. I have finally “met” some people who understand what my life is like! From what I have learned, NLD affects only 1 in 1000 people. That’s rare! So, I figure that where I went to college there were 6000 undergrads. So statistically, there would have been only 6 of us in the whole university. And my friend who is working on her doctorate in clinical psychology (and knows LD inside and out) says, “No. Chances are that you were the only one in the university because most of those people wouldn’t have made it that far”.

To think that I hooked up with 3 people in one day (Ball, PT, and Claire) who appear to have the same disability, or at least very similar, amazes me.

Thank you and God bless you all (even Ball who doesn’t believe in God !)

Submitted by Anonymous on Sun, 12/15/2002 - 7:47 AM

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Claire:

I feel for you. I have often said that the fact that this is a “hidden disability” is both a blessing and a curse.I am also in my forties and was diagnosed a couple of years ago. I get the distinct impression that people think that LD only bothers us because we were diagnosed. When my husband was a little boy of about 4 or 5 years, he would often play outside and skin a knee or an elbow. He would run around and keep playing until suddenly he looked down and caught a glimpse of blood. Only then would he start crying. I feel that most people look at adults with LD in that light.

The main fallacy that abounds among what I call,”those civilians” (those people who are not LD) is that a learning disability should not impact an adult if s/he is no longer in school. I try to explain it in these terms:
“How many times in the course of a week would you say that you need to learn something new, follow directions, assemble something, listen to a presentation, watch a movie and follow the plot, travel in an unfamiliar area and try not to get lost, understand a football or baseball game, do any task involving steps, read a map or a graph or, God forbid, a blueprint?

When you put it to them like that, if they are half-way savvy, a lightbulb will usually go off in their brains. They will never totally”get it”, but they will inch a little closer.

I would urge you to do one of two things (or both).

1) Download some information from LD OnLine that explains your particular disability.
Don’t overwhelm them; keep it short. Give it to your teacher and ask her, politely, to read it.

2) If you have an office for student disabilities at your college, (assuming they are knowledgeable)
get them involved. Have them talk to your teacher. One such person that I talked to at a law school told me that more than once he has had to call a meeting with professors to make them understand that a particular student needed extra time on a test.

By the way, what kind of LD do you have? I’m guessing that it’s NLD since you say that you are articulate. That would fit.

Actually, I think that we are all better off knowing the truth about our disabilities. Of course, it hurts.
Believe me, I am from a family of 8 kids. Of the 14 of our collective children, 7 of them have diagnosed disabilities. I am 100% convinced that all 8 of us plus my parents have various learning disabilities. And I am the only one in the family who recognizes it.To me, they do not appear better off for not knowing.

Keep your chin up, lady. Keep plugging a way and don’t quit.

Best of luck,
Erin

Submitted by Anonymous on Sun, 12/15/2002 - 9:49 AM

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To Erin, and PT, how considerate of you both to respond by my comments with such compassion. Thank you. Specifically my disability is in perceptual organization-8th percentile and working memory -9th percentile.

It is the working memory which gives me much difficutly. To swing over new information into my long term memory, takes a lot of repitition and practice. I surprise myself with my persistence and diligence.

I am studying nursing. As I mentioned, I am newly diagnosed and I don’t know what NLD is. The test I took was called the Wechsler Adult Intellegence Scale.

I do appreciate your advice, Erin. I will try to locate more information on my specific weakness.

Submitted by Anonymous on Mon, 12/16/2002 - 2:22 AM

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As far as learing goes I have taught myself an effective and a pragmatic approach to learning. My processing speed id soooo slow that learning takes a long long time. Also my perceptual hold is not good. It’s kind of like the tortoise and th hare thing except not only is this tortois is exceedingly slow but when he tries to go fast he falls down which slows him up even more.

What I do is I study for short periods of time with a lot of stops and starts. It’s this simple. If you go slower things are just gonna take longer so just be prepared for that. A too big of a course load may not be possible maybe 9 credits per semester is all some of us should take.

I recieved a 4.0 by taking courses I could handle. I studied my ass off. Unfortunately taking the time you need doesn’t cut it in the real world.

We should take the time to write our elected officials. The LD industry probably pushes an agenda that may or may not be in our best interest.

I was a member of the NYS brain injury association but they are pretty much a paper tiger. They have a board of directors that holds golf tourneys and have conventios in diffrent cities that are paid for by the rank and file.

I really think our elected officials are the way to go. A grass roots approach will remain pure. Disabled people get exploited by the orgs that get $$$$$$ by pretending to be their friends. It happens all the time. In NY the retarded get treated like slaves and are put into sheltered work/sweat shops. Their SSI check are confiscated (for their own good) I knew of one facility where a school had been converted to a work?sweat shop. there were offices adjoining the gymnasium that had been converted into a sweat shop. In the gym were rows if table and folding chairs where the retarded people sat and assembled stuff. In the summer some of the offices had window air conditioners that were vented into the gym where the retarded people were working. Many of these people had physical disabilities as well. @!#$ like this goes on everywhere. Somehow they get around the OSHA regs. Slaves on the platations were treated better.

SOme of this on this thread have the results of a neuro psych eval. Now what? What agency can understand it?So now we know exactly how we are screwed up from a quantitative view. How much good will that do?

sorry for the tangetal nature of this thread

Submitted by Anonymous on Wed, 12/18/2002 - 8:23 PM

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To: Ball

You did extremely well in school receiveing a 4. average. What did you study?

I’m curious about why would you compare yourself to the mental retardeds and the sweat shops. I don’t understand this.

Your advice about not taking a full course load is good. I signed up for a 3yr acclerated RN program in 24 consequent months. My frustratation has also acclerated because I’m a slow processor and just plain need more time than the average person.

Ball, I ashamed and embarrassed about my LD. I hide it from my co-students and I don’t think this is the way to go. But, I’ve only known for 1 year. Do you tell your friends about your LD.?

Also, I find that when I have a cocktail or two, like during this holiday season, my memory goes to nothing. Now, my working memory is very damaged to being with. This scares me when I have the occassional drink. Am I destroying what little brain cells I have left. Or do you think it is O,K. to have the occassional holiday cheer.

Help please, Claire

Submitted by Anonymous on Thu, 12/19/2002 - 1:09 AM

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Gosh Claire, I tried nursing back in 1989 way before I knew anything about my LD and it was a disaster for me. Fortunately, I didn’t get very far and didn’t lose that much time but still it was hard to quit something. You have my utmost admiration.

Deciding whether to disclose your LD or not is a tough choice to make. Since I was initially diagnosed in 95 with the NLD diagnosis coming in 98, I have many more years under my belt than you do. When I took my introductory Assistive Technology Course, I decide I would disclose during our first class meeting because I felt it was relevant to people understanding where I was coming from in class discussions. Also, if I couldn’t disclose in an AT class, that was a sorry state of affairs. It worked out very well but it never is easy.

I agree with you about not wanting to hide it but also be prepared to deal with people who will have alot of misunderstandings about what LD really is, particulary in the employment area.

Can’t help you with the alcohol issue since I rarely drink. I would think an occasional one isn’t going to hurt anything. But then again, if you feel your memory is impacted, that could be a reason to abstain totally just like someone quits sugar completely (not me) because he/she doesn’t like the feeling it provides.

Hang in there.

PT

Submitted by Anonymous on Thu, 12/19/2002 - 2:47 AM

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Claire, I earned a licence to to do refigeration. I didn’t go for the degree because the drgree really had little value unless you go on for a 4 year engineering or design program. I also took two courses in Adobe Photo shop. I didn’t take any courses in electronics or circut design because of my visual problems and poor math skills. I just learned enough to fix refrigeration equipment.

I was embarrased alot of times. Especially in lab when I was having one of my many brain farts or “brown outs” do to overload. A few times I got so frustrated that I lost my temper. Visually confusing stuff really screws me up. I get confused and almost air sick.

I really think it’s a good idea to take small managable bites. It will also make you more knowlegable in your field plus you cum will be higher and that looks good on a resume.

Submitted by Anonymous on Fri, 12/20/2002 - 12:27 AM

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PT why was nursing a diaster for you? I am curious.

Ball, can you make a living with your refrigeration diploma.?

I am struggling with nursing, but what helps me is my persistence to write and write and rewrite new information. I also tape my note and listen, re-listen and relisten- it’s called over learing. I;ve always been like this, Except I did’nt know it was a disabiltiey. I achieved a lot in my past. I have danced in ballet in professsional company. Later , I achielved my Brokers License and earned excellent money working selling houses for Remax. All without knowing about my LD. I’m finding out that i’m really good with people - i’m aiming towards worling in psychiatric Nursing and continuing to get my Masters, I’m not married, and have not children, so I utilize all my time learning about what interests me.

Take care, I hope to talk to all soon, Claire.

Submitted by Anonymous on Fri, 12/20/2002 - 4:08 AM

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PT,
I’m curious about what you did’t like about nursing.?

Submitted by Anonymous on Sun, 12/22/2002 - 3:32 AM

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I am trying to Connect with DVR in North Carolina social security has to send them a letter on award first. They are dragging their feet. Doing refrigeration is something I won’t know if I can do it until I try. I wanna do it through DVR first incase it doesn’t work out. That way I won’t lose my medicare benifits.

In the real world things move a lot faster.

Submitted by Anonymous on Sun, 12/22/2002 - 12:32 PM

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Good Luck ! Why don’t you just get a job without the dorkos ? You seem to know it all. Those fruitcakes need to get a real job instead of keeping people in infantile status. By the way, how did LD people exist before DVR came into existance ?

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