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Matthew74

Matthew74

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I'm in a bind because I can't seem to get help from anyone. I have been living with my mother and sister but now have to move out on my own. The following refers primarily to the situation in the USA, but input, especially of the more personal sort is very welcome from all.

What I really want is a good job and a normal life, and I don't think it's at all that unrealistic, but it seems absolutely impossible to get to from here. So, I have reluctantly sought help on a number of occasions...

The Epilepsy Foundation has been perfectly useless (I tried more than once).

I applied for Disability once, was denied, then applied again with a lawyer and the state lost my application. (Fortunately I am healthier now than I was at that time.)

I visited a local private organization for disabled people, which was a good personal experience, but in the end they just referred me back to the government.

Today I visited an "orientation" at the state office of rehabilitation, and while I will certainly follow up, it does not look promising. (I'm hoping to get some funds to help pay for a one year vocational school which will certainly get me a job that I should enjoy very much. I have done my homework on that.)

:horse:
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The problem is I am white, male, unmarried, no kids, no legal problems whatsoever, well educated, middle class, and I try to work as much as I can. All of these are definite negatives as far as the government is concerned. I am also under the impression that people with epilepsy tend to get discriminated against by the government (in the sense that most of us don't meet technical requirements if the seizures are well enough "controlled", and because, for lack of a better expression, epilepsy is not politically correct.)

Any thoughts about that? I don't want it to be a rant, but some constructive thoughts would be helpful.
 
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I should add that at present I am getting all my meds for free from the manufacturers, that when I had insurance it paid for stuff, and my doctors have been willing to work with me financially. So THEY help (the "bad" guys), just not the people who are supposed to help.
 
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If you can't find anything try calling the governor of your state and let his office know and someone there will be able to point you in the right direction of were to go.:agree:

Belinda
 
Matthew, my country is pretty unhelpful with disability, so I had to find another way around things. I struggled to work full time for an employer because of all my seizurish days, so I managed to find a way to freelance from home. I worked my earnings up and changed my work routine so that I could start work really early and get off work at 1, which gives me a good deal of time to rest. I can take a day off here and there when i'm really ill without any of my clients even noticing and since none of them employs me, when I tell them I'm off for two weeks, there's nothing they can do. So I haven't had too many problems making my salary and still working just the right amount so that it doesn't affect my epilepsy.
 
my lawyer sucked and he was denied, i had to do the footwork myself, of course now i have a issue on my credit because they still wanted to charge me several years later when I got disability on my own.

keep trying, you will get there.
 
Hey Matthew Welcome to the forums.
I am in a similar situation as you and I also have the same class background as you too.
I am actually currently working right now but I hate it and I have been discriminated against ever since I came back from my resection this past June. Basically I came back to work and they didn't have anything for me to do so I just sat in a cube all day being depressed and then 2 weeks ago they gave me a "corrective action plan" cause they didn't think I had the level of skill for someone in my position but they still have me doing midnight code deploys for production applications. So basically they are trying to muscle me out so they don't have to pay higher into Unemployment. I live in Pennsylvania in the US. I actually called a lawyer yesterday and she told me that if I voluntarily terminate myself the burden of proof is on me that is was neccesitus due to my health condition. So I prolly wouldn't get it I also can't drive and my mom has to bring me to work which is a 50 minute commute. So we thought we could go that route if I quit. What type of seizures do you have? I have intractable epilepsy and recently since my last resection ive been mainly having frequent partials with chewing and drooling. I did ask The lawyer that too if it would be harder to prove that I had to leave due to my E since alot of people don't even know about E and im sure my employer would appeal if I was granted it. We live in a crappy time in our country when we have to kill ourselves mentally at our jobs just to cover a disorder we did nothing to deserve and which in my opinion just the stress from that cycle makes the seizures worse. like you I also only need a little bit of money since I am planning on going to school in the fall as well. Ugh we really need single payer in this country. Sorry I may have ranted. Hope it helps.
 
I also had another thought too. That its not just hard to prove that the epilepsy itself is interfering with your ability to work but also all the side effects like photo sensitivity and depression and mood swings and drowsiness that also really play into it as well. Like I am a programmer and it is intrinsic to my profession that I stare at a monitor for 8 hours everyday in deep focus but since my last surgery I have become more photosensitive and the screens really bother me even with contrast and brightness on lowest. But how do you prove that in court? That's why I am afraid to quit honestly cause I don't know how I would prove that I have all these issues even though I really do and I know being at my job exacerbates my seizures cause I have the most of them in front of my desk during the day. ugh. Ok, Yeah , That was a rant.
 
urza3277 said:
I also had another thought too. That its not just hard to prove that the epilepsy itself is interfering with your ability to work but also all the side effects like photo sensitivity and depression and mood swings and drowsiness that also really play into it as well. Like I am a programmer and it is intrinsic to my profession that I stare at a monitor for 8 hours everyday in deep focus but since my last surgery I have become more photosensitive and the screens really bother me even with contrast and brightness on lowest. But how do you prove that in court? That's why I am afraid to quit honestly cause I don't know how I would prove that I have all these issues even though I really do and I know being at my job exacerbates my seizures cause I have the most of them in front of my desk during the day. ugh. Ok, Yeah , That was a rant.
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Surely your neuro has done flashing light EEGs that would prove that you have photosensitive seizures?
 
I don't know honestly. All he ever says is that they are normal and my seizures prolly aren't reaching the EEG leads.

I also just meant that I get headaches from the constant staring into the monitors. No necessarily that it was the only seizure trigger. Sorry if that was confusing.
 
Ever checked your eye sight?

Also your posture? I work in front of a PC all day and I had terrible back pain. Then I realised it was the way I was sitting when working and stuck a cushion behind my lower back. Fixed it. Still have to remind myself not to slouch over my shoulders though.
 
Hey Kirsten Yeah I have had terrible Eyesight since I was a kid. I wear huge thick glasses and have a stygma in my right eye. also my last set of resections removed a large part of my right parietal lobe. If you don't already know one of the primary functions of the parietal lobe is how to interpret visual signals from the eyes. So basically how we perceive objects around us. I also lost all peripheral vision in my left eye from the procedure so I run into doors and people a lot especially coming around corners cause I can't see them in time. After all that I still have partials =(
 
Kirsten: That's great! I am going to learn to repair band instruments, and there is the possibility for me to do this out of my home, or even buy, repair, and sell instruments on the web.
 
Urza: I am not "photosensitive" in an EEG, and have never had a problem with strobe lights, but computers bother me. My epilepsy got a lot worse when I had a job looking at a computer screen all day long (old monitors, not flat screens). Working on my laptop I get light auras. Our flatscreen TV doesn't seem to bother me, but when I was doing particularly bad it set me off once. The whole Doctor/EEG diagnosis thing can be very frustrating. I read somewhere that putting a patch over one eye helps, but I haven't tried that myself.

I have read a number of posts by people in a similar work position as yourself. It's good that you are getting informed about your decisions ahead of time.
 
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