 bykerb... New - my struggleCreated by bykerb...at8/26/08 - 12:47 pm|3 Comments
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bykerb... New - my struggleCreated by bykerb...at8/26/08 - 12:46 pm
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 WJM |
 JayBri... Going Crazy?Created by JayBri...at5/21/08 - 10:54 pm|12 Comments
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dan2work Every one needs to know thisCreated by dan2workat5/15/08 - 1:11 pm
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 mommy2... How have you accepted the seesaw as reality?Created by mommy2...at4/29/08 - 7:58 pm|4 Comments
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Amaterasu New - Seizures while sleeping? How can I tell if Im having them?Created by Amaterasuat4/24/08 - 11:30 am|19 Comments
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 Black.... Epilepsy triggers?Created by Black....at3/18/08 - 11:11 am|29 Comments
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 katfaerie greetings and salutationsCreated by katfaerieat3/18/08 - 6:59 am|1 Comment
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Black.... Is this Epilepsy?Created by Black....at3/17/08 - 11:54 am|5 Comments
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katfaerie New - epilesy and depression and tinitisCreated by katfaerieat3/6/08 - 8:51 am|12 Comments
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dudett... epilepsyCreated by dudett...at3/3/08 - 6:41 am|2 Comments
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lemon-oh Seizures?Created by lemon-ohat1/30/08 - 8:13 am
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Sasa Coffee and Anti-convulsantsCreated by Sasaat11/27/07 - 6:24 pm|8 Comments
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 suebear Question for VNS patients: Should I be concerned?Created by suebearat10/27/07 - 1:16 pm|1 Comment
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 Sashka my brother needs help, possibly simple partial seizuresCreated by Sashkaat6/2/07 - 4:40 pm|2 Comments
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Jackyl |
mojo_jojo New - My sisterCreated by mojo_jojoat9/17/08 - 12:50 am
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M_Johnson New - Girlfriend suffers from epilepsyCreated by M_Johnsonat9/16/08 - 8:13 am|1 Comment
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whatup261 New - Scared to Quit SmokingCreated by whatup261at9/13/08 - 4:13 pm|1 Comment
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bristo... New - dose anyone take tegretol tablets?Created by bristo...at9/8/08 - 5:29 pm|5 Comments
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bristo... New - dose anyone take tegretol tablets?Created by bristo...at9/8/08 - 5:18 pm|1 Comment
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 reba New - question about simple partial seizuresCreated by rebaat8/30/08 - 9:13 am|3 Comments
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 aura14 New - paxilCreated by aura14at8/26/08 - 6:02 pm|1 Comment
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Jewell New - wanting to be a better personCreated by Jewellat8/25/08 - 11:45 am|1 Comment
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Recent Comments on this Discussion
1nevermore: When I was diagnosed, I felt the same way- How could God do this to me? I was a good kid, always thinking and doing for others. But after I started taking the correct medication ( I had trouble finding the right one), I realized that there were people who were worse off than myself. Your life will get better- I found a wondweful guy who did't care if I had seizures! We married, had a son and 34 years later, we're still happily married!! You will find the sasme happiness- whether it will be college, good job, life long love- it will come!! Hang in there!! Allyson
Hugs (((1nevermore)))- I know it feels like that now - but it won't feel like that forever.
There were times all I could do was focus on getting out of bed - period. I hated life, I hated the world - hey, I thought everyone else had it so good, no one wanted to help me and the universe was out to get me.
It won't be what you want to hear, but things didn't feel much better for me until I truly "owned" my disorder. By "owning", I don't mean controlling. By "Owned" I mean that I took responsibility for my own happiness. Once I stopped fighting that I had it, that it wasn't going away, I started to look at ways to improve my own life, instead of waiting for my docs and my meds to do it for me. I know this just made you angry - but please keep reading...
That being said - I didn't truly "own" my disorder until I was ready (when the student is ready, the master appears). Funny it was when I was about your age that I began to take these steps!
Maybe this place (I hate my life) is a place you need to visit right now - and I stress VISIT. I once needed to visit that place as did a lot of others, who used that place as motivation to truly grow to become a better person in life.
Regardless it's painful - hang in there!
Kimberly
I have hated my life for a long time , and I have to do something about that some how . I am 35 years old at this time , and I know that is a young age . Things are really bad at this time were I live at . It has got better , but some people are still saying bad things to me , and it is very hard to live with .
This all started around April of last year . People were doing bad thing to me at the gym . That's were it all started . It lookes better there at this time . So I will be going back there soon . Then it went to the place that I work at at this time . Some people have got better there , but not everyone . So I want out of that job a lot . The reason that I work there is for my insurance . I have social security so I only have to work at that place one day a week . I am very , very glad about that . The other day I had 2 customer's say bad things to me that made me mad . I bet some people there were just thinking I was just lieing most of the things that I said . That is how some of the people that work there are . The job is the worst thing at this time . I try not to go into store's anymore , because I think some people are going to say bad things to me . I get that almost every day . I just have to move some how . When I went to see my sister in California . Things were so much better . I didn't have to deal with the people that have been doing bad thing's to me .
I did go and see a doctor yesterday , and talked to him about my problems . I will be getting some pill's tonight to help me .
I've mentioned this before, but when I was first diagnosed in the early 60's. Epilepsy was something very few DR's knew anything about, so it was treated as "un-natural".
I spent 5 years in a State Hospital in Traverse City. Michigan. What went on behind closed doors back then, was not treatment. I'm thankful that they're all closed down now.
I was on my own at 17 and by 1988 I had adjusted my own medication and have been seizure free for 22 years.
Last year I was able to face to past. Heres a forum and video with memories of what myself and other patients went through there.
You might want to see the video first...
Forum
http://www.kirkbridebuildings.com/forum/viewtopic.php?f=38&t=1407&st=0&sk=t&sd=a
Video
http://www.youtube.com/watch?v=YjkkS2PYO7c
Mike
im in the uk and what you have just said sounds draconian until i realise that my son who has the most difficult type of epilepsy is confined to a 'residentiial' care home as he is classed as a vulnerable disabled adult.
the home is run by unqualified people regarding my sons condition and his complex medication is vital to his well being.
There have been times when misinformation from untrained staff have led to serious overdoses and also breaking of his arms.
i am now in the process of trying to get him out of there legally as i am being stopped by his social workers who dont see anything wrong with his home (they just pay his fees) and cant be bothered to thoroughly check things out and hence an inadequate response to my complaints.
The business end of this is the home is run as a business who received huge funds from social services.
His treatment at the hands of the people at the home and lack of interest frm his social worker show a corrupt system whereby adults with disabilities are just a viable business interest. The businesses are run by inadequate untrained 'professionals' and the social services prefer to dump their money with them because they think they can track there money.
I have find doing research that the company is corrupt, my son wants to come home and both parties are denying he wants to come home even though his condition has detriorated over the last 6 months, to which i am getting the blame, (yep beggars belief dunnit?) and i cannot fight them legally as they are both wealthy institutions and the legal system will not provide me with the funding to present my case in court.
The system stinks and to cap it all they have stopped me from seeing my son and stopped all his previous home visits.
Im writing this to let off steam and i am just an individual fighting a just cause to try and protect my son against a legal and business system that has all the power.
Part of his deterioration is the fact that i cannot look after him and try to get him better. They are damaging all the mother/child contact and denying me the right to give my child protection.
He has been also suffering mental abuse at the hands of the manager as she does not want to lose control over her financial asset because i have been sending complaints, to which no-one is responding.
I am currently looking around now to find if i can get legal help free of charge to take my son out of there.
The justice system stinks here and the corporations wield all the power. The individual is no longer sacrosanct and human rights and liberties are thrown out of the window if you have not got the wealth to defend your rights or to protect someone elses.
The only positive i can see is after reading another complaint on here about the cost of medication is that he gets his free of charge. His medication is extremely expensive and this wasnt free he would be dead.
I hope something turns up soon and im doing my best to find help for my son.
The sad thing is i talk to him everyday and have to be positive for him as he doesnt understand what is going on, which means in turn that i have to make it look like it's good there and all concerned are trying to help him
and that really hurts............
Kiwi:
What you have is a "Patients Rights" and "Health and Safety" issue.
I don't know how the Laws are handled in the UK, but in the US a complaint like yours would call for
an inspection. In the 60's when I was in that State Hospital, patients rights was barely written into the law.
Once they became law in the 80's, State Hospitals were shut down.
You need to search the web for a "Patients Rights Advocate"/or forum. Post you patients rights problem (in detail)
with them and make sure they know your in the UK. Someone there should beable to tell you what steps you need to take.
Good Luck
Mike
im in the uk and what you have just said sounds draconian until i realise that my son who has the most difficult type of epilepsy is confined to a 'residentiial' care home as he is classed as a vulnerable disabled adult.
the home is run by unqualified people regarding my sons condition and his complex medication is vital to his well being.
There have been times when misinformation from untrained staff have led to serious overdoses and also breaking of his arms.
i am now in the process of trying to get him out of there legally as i am being stopped by his social workers who dont see anything wrong with his home (they just pay his fees) and cant be bothered to thoroughly check things out and hence an inadequate response to my complaints.
The business end of this is the home is run as a business who received huge funds from social services.
His treatment at the hands of the people at the home and lack of interest frm his social worker show a corrupt system whereby adults with disabilities are just a viable business interest. The businesses are run by inadequate untrained 'professionals' and the social services prefer to dump their money with them because they think they can track there money.
I have find doing research that the company is corrupt, my son wants to come home and both parties are denying he wants to come home even though his condition has detriorated over the last 6 months, to which i am getting the blame, (yep beggars belief dunnit?) and i cannot fight them legally as they are both wealthy institutions and the legal system will not provide me with the funding to present my case in court.
The system stinks and to cap it all they have stopped me from seeing my son and stopped all his previous home visits.
Im writing this to let off steam and i am just an individual fighting a just cause to try and protect my son against a legal and business system that has all the power.
Part of his deterioration is the fact that i cannot look after him and try to get him better. They are damaging all the mother/child contact and denying me the right to give my child protection.
He has been also suffering mental abuse at the hands of the manager as she does not want to lose control over her financial asset because i have been sending complaints, to which no-one is responding.
I am currently looking around now to find if i can get legal help free of charge to take my son out of there.
The justice system stinks here and the corporations wield all the power. The individual is no longer sacrosanct and human rights and liberties are thrown out of the window if you have not got the wealth to defend your rights or to protect someone elses.
The only positive i can see is after reading another complaint on here about the cost of medication is that he gets his free of charge. His medication is extremely expensive and this wasnt free he would be dead.
I hope something turns up soon and im doing my best to find help for my son.
The sad thing is i talk to him everyday and have to be positive for him as he doesnt understand what is going on, which means in turn that i have to make it look like it's good there and all concerned are trying to help him
and that really hurts............
im in the uk and what you have just said sounds draconian until i realise that my son who has the most difficult type of epilepsy is confined to a 'residentiial' care home as he is classed as a vulnerable disabled adult.
the home is run by unqualified people regarding my sons condition and his complex medication is vital to his well being.
There have been times when misinformation from untrained staff have led to serious overdoses and also breaking of his arms.
i am now in the process of trying to get him out of there legally as i am being stopped by his social workers who dont see anything wrong with his home (they just pay his fees) and cant be bothered to thoroughly check things out and hence an inadequate response to my complaints.
The business end of this is the home is run as a business who received huge funds from social services.
His treatment at the hands of the people at the home and lack of interest frm his social worker show a corrupt system whereby adults with disabilities are just a viable business interest. The businesses are run by inadequate untrained 'professionals' and the social services prefer to dump their money with them because they think they can track there money.
I have find doing research that the company is corrupt, my son wants to come home and both parties are denying he wants to come home even though his condition has detriorated over the last 6 months, to which i am getting the blame, (yep beggars belief dunnit?) and i cannot fight them legally as they are both wealthy institutions and the legal system will not provide me with the funding to present my case in court.
The system stinks and to cap it all they have stopped me from seeing my son and stopped all his previous home visits.
Im writing this to let off steam and i am just an individual fighting a just cause to try and protect my son against a legal and business system that has all the power.
Part of his deterioration is the fact that i cannot look after him and try to get him better. They are damaging all the mother/child contact and denying me the right to give my child protection.
He has been also suffering mental abuse at the hands of the manager as she does not want to lose control over her financial asset because i have been sending complaints, to which no-one is responding.
I am currently looking around now to find if i can get legal help free of charge to take my son out of there.
The justice system stinks here and the corporations wield all the power. The individual is no longer sacrosanct and human rights and liberties are thrown out of the window if you have not got the wealth to defend your rights or to protect someone elses.
The only positive i can see is after reading another complaint on here about the cost of medication is that he gets his free of charge. His medication is extremely expensive and this wasnt free he would be dead.
I hope something turns up soon and im doing my best to find help for my son.
The sad thing is i talk to him everyday and have to be positive for him as he doesnt understand what is going on, which means in turn that i have to make it look like it's good there and all concerned are trying to help him
and that really hurts............
im in the uk and what you have just said sounds draconian until i realise that my son who has the most difficult type of epilepsy is confined to a 'residentiial' care home as he is classed as a vulnerable disabled adult.
the home is run by unqualified people regarding my sons condition and his complex medication is vital to his well being.
There have been times when misinformation from untrained staff have led to serious overdoses and also breaking of his arms.
i am now in the process of trying to get him out of there legally as i am being stopped by his social workers who dont see anything wrong with his home (they just pay his fees) and cant be bothered to thoroughly check things out and hence an inadequate response to my complaints.
The business end of this is the home is run as a business who received huge funds from social services.
His treatment at the hands of the people at the home and lack of interest frm his social worker show a corrupt system whereby adults with disabilities are just a viable business interest. The businesses are run by inadequate untrained 'professionals' and the social services prefer to dump their money with them because they think they can track there money.
I have find doing research that the company is corrupt, my son wants to come home and both parties are denying he wants to come home even though his condition has detriorated over the last 6 months, to which i am getting the blame, (yep beggars belief dunnit?) and i cannot fight them legally as they are both wealthy institutions and the legal system will not provide me with the funding to present my case in court.
The system stinks and to cap it all they have stopped me from seeing my son and stopped all his previous home visits.
Im writing this to let off steam and i am just an individual fighting a just cause to try and protect my son against a legal and business system that has all the power.
Part of his deterioration is the fact that i cannot look after him and try to get him better. They are damaging all the mother/child contact and denying me the right to give my child protection.
He has been also suffering mental abuse at the hands of the manager as she does not want to lose control over her financial asset because i have been sending complaints, to which no-one is responding.
I am currently looking around now to find if i can get legal help free of charge to take my son out of there.
The justice system stinks here and the corporations wield all the power. The individual is no longer sacrosanct and human rights and liberties are thrown out of the window if you have not got the wealth to defend your rights or to protect someone elses.
The only positive i can see is after reading another complaint on here about the cost of medication is that he gets his free of charge. His medication is extremely expensive and this wasnt free he would be dead.
I hope something turns up soon and im doing my best to find help for my son.
The sad thing is i talk to him everyday and have to be positive for him as he doesnt understand what is going on, which means in turn that i have to make it look like it's good there and all concerned are trying to help him
and that really hurts............
im in the uk and what you have just said sounds draconian until i realise that my son who has the most difficult type of epilepsy is confined to a 'residentiial' care home as he is classed as a vulnerable disabled adult.
the home is run by unqualified people regarding my sons condition and his complex medication is vital to his well being.
There have been times when misinformation from untrained staff have led to serious overdoses and also breaking of his arms.
i am now in the process of trying to get him out of there legally as i am being stopped by his social workers who dont see anything wrong with his home (they just pay his fees) and cant be bothered to thoroughly check things out and hence an inadequate response to my complaints.
The business end of this is the home is run as a business who received huge funds from social services.
His treatment at the hands of the people at the home and lack of interest frm his social worker show a corrupt system whereby adults with disabilities are just a viable business interest. The businesses are run by inadequate untrained 'professionals' and the social services prefer to dump their money with them because they think they can track there money.
I have find doing research that the company is corrupt, my son wants to come home and both parties are denying he wants to come home even though his condition has detriorated over the last 6 months, to which i am getting the blame, (yep beggars belief dunnit?) and i cannot fight them legally as they are both wealthy institutions and the legal system will not provide me with the funding to present my case in court.
The system stinks and to cap it all they have stopped me from seeing my son and stopped all his previous home visits.
Im writing this to let off steam and i am just an individual fighting a just cause to try and protect my son against a legal and business system that has all the power.
Part of his deterioration is the fact that i cannot look after him and try to get him better. They are damaging all the mother/child contact and denying me the right to give my child protection.
He has been also suffering mental abuse at the hands of the manager as she does not want to lose control over her financial asset because i have been sending complaints, to which no-one is responding.
I am currently looking around now to find if i can get legal help free of charge to take my son out of there.
The justice system stinks here and the corporations wield all the power. The individual is no longer sacrosanct and human rights and liberties are thrown out of the window if you have not got the wealth to defend your rights or to protect someone elses.
The only positive i can see is after reading another complaint on here about the cost of medication is that he gets his free of charge. His medication is extremely expensive and this wasnt free he would be dead.
I hope something turns up soon and im doing my best to find help for my son.
The sad thing is i talk to him everyday and have to be positive for him as he doesnt understand what is going on, which means in turn that i have to make it look like it's good there and all concerned are trying to help him
and that really hurts............
im in the uk and what you have just said sounds draconian until i realise that my son who has the most difficult type of epilepsy is confined to a 'residentiial' care home as he is classed as a vulnerable disabled adult.
the home is run by unqualified people regarding my sons condition and his complex medication is vital to his well being.
There have been times when misinformation from untrained staff have led to serious overdoses and also breaking of his arms.
i am now in the process of trying to get him out of there legally as i am being stopped by his social workers who dont see anything wrong with his home (they just pay his fees) and cant be bothered to thoroughly check things out and hence an inadequate response to my complaints.
The business end of this is the home is run as a business who received huge funds from social services.
His treatment at the hands of the people at the home and lack of interest frm his social worker show a corrupt system whereby adults with disabilities are just a viable business interest. The businesses are run by inadequate untrained 'professionals' and the social services prefer to dump their money with them because they think they can track there money.
I have find doing research that the company is corrupt, my son wants to come home and both parties are denying he wants to come home even though his condition has detriorated over the last 6 months, to which i am getting the blame, (yep beggars belief dunnit?) and i cannot fight them legally as they are both wealthy institutions and the legal system will not provide me with the funding to present my case in court.
The system stinks and to cap it all they have stopped me from seeing my son and stopped all his previous home visits.
Im writing this to let off steam and i am just an individual fighting a just cause to try and protect my son against a legal and business system that has all the power.
Part of his deterioration is the fact that i cannot look after him and try to get him better. They are damaging all the mother/child contact and denying me the right to give my child protection.
He has been also suffering mental abuse at the hands of the manager as she does not want to lose control over her financial asset because i have been sending complaints, to which no-one is responding.
I am currently looking around now to find if i can get legal help free of charge to take my son out of there.
The justice system stinks here and the corporations wield all the power. The individual is no longer sacrosanct and human rights and liberties are thrown out of the window if you have not got the wealth to defend your rights or to protect someone elses.
The only positive i can see is after reading another complaint on here about the cost of medication is that he gets his free of charge. His medication is extremely expensive and this wasnt free he would be dead.
I hope something turns up soon and im doing my best to find help for my son.
The sad thing is i talk to him everyday and have to be positive for him as he doesnt understand what is going on, which means in turn that i have to make it look like it's good there and all concerned are trying to help him
and that really hurts............
im in the uk and what you have just said sounds draconian until i realise that my son who has the most difficult type of epilepsy is confined to a 'residentiial' care home as he is classed as a vulnerable disabled adult.
the home is run by unqualified people regarding my sons condition and his complex medication is vital to his well being.
There have been times when misinformation from untrained staff have led to serious overdoses and also breaking of his arms.
i am now in the process of trying to get him out of there legally as i am being stopped by his social workers who dont see anything wrong with his home (they just pay his fees) and cant be bothered to thoroughly check things out and hence an inadequate response to my complaints.
The business end of this is the home is run as a business who received huge funds from social services.
His treatment at the hands of the people at the home and lack of interest frm his social worker show a corrupt system whereby adults with disabilities are just a viable business interest. The businesses are run by inadequate untrained 'professionals' and the social services prefer to dump their money with them because they think they can track there money.
I have find doing research that the company is corrupt, my son wants to come home and both parties are denying he wants to come home even though his condition has detriorated over the last 6 months, to which i am getting the blame, (yep beggars belief dunnit?) and i cannot fight them legally as they are both wealthy institutions and the legal system will not provide me with the funding to present my case in court.
The system stinks and to cap it all they have stopped me from seeing my son and stopped all his previous home visits.
Im writing this to let off steam and i am just an individual fighting a just cause to try and protect my son against a legal and business system that has all the power.
Part of his deterioration is the fact that i cannot look after him and try to get him better. They are damaging all the mother/child contact and denying me the right to give my child protection.
He has been also suffering mental abuse at the hands of the manager as she does not want to lose control over her financial asset because i have been sending complaints, to which no-one is responding.
I am currently looking around now to find if i can get legal help free of charge to take my son out of there.
The justice system stinks here and the corporations wield all the power. The individual is no longer sacrosanct and human rights and liberties are thrown out of the window if you have not got the wealth to defend your rights or to protect someone elses.
The only positive i can see is after reading another complaint on here about the cost of medication is that he gets his free of charge. His medication is extremely expensive and this wasnt free he would be dead.
I hope something turns up soon and im doing my best to find help for my son.
The sad thing is i talk to him everyday and have to be positive for him as he doesnt understand what is going on, which means in turn that i have to make it look like it's good there and all concerned are trying to help him
and that really hurts............
im in the uk and what you have just said sounds draconian until i realise that my son who has the most difficult type of epilepsy is confined to a 'residentiial' care home as he is classed as a vulnerable disabled adult.
the home is run by unqualified people regarding my sons condition and his complex medication is vital to his well being.
There have been times when misinformation from untrained staff have led to serious overdoses and also breaking of his arms.
i am now in the process of trying to get him out of there legally as i am being stopped by his social workers who dont see anything wrong with his home (they just pay his fees) and cant be bothered to thoroughly check things out and hence an inadequate response to my complaints.
The business end of this is the home is run as a business who received huge funds from social services.
His treatment at the hands of the people at the home and lack of interest frm his social worker show a corrupt system whereby adults with disabilities are just a viable business interest. The businesses are run by inadequate untrained 'professionals' and the social services prefer to dump their money with them because they think they can track there money.
I have find doing research that the company is corrupt, my son wants to come home and both parties are denying he wants to come home even though his condition has detriorated over the last 6 months, to which i am getting the blame, (yep beggars belief dunnit?) and i cannot fight them legally as they are both wealthy institutions and the legal system will not provide me with the funding to present my case in court.
The system stinks and to cap it all they have stopped me from seeing my son and stopped all his previous home visits.
Im writing this to let off steam and i am just an individual fighting a just cause to try and protect my son against a legal and business system that has all the power.
Part of his deterioration is the fact that i cannot look after him and try to get him better. They are damaging all the mother/child contact and denying me the right to give my child protection.
He has been also suffering mental abuse at the hands of the manager as she does not want to lose control over her financial asset because i have been sending complaints, to which no-one is responding.
I am currently looking around now to find if i can get legal help free of charge to take my son out of there.
The justice system stinks here and the corporations wield all the power. The individual is no longer sacrosanct and human rights and liberties are thrown out of the window if you have not got the wealth to defend your rights or to protect someone elses.
The only positive i can see is after reading another complaint on here about the cost of medication is that he gets his free of charge. His medication is extremely expensive and this wasnt free he would be dead.
I hope something turns up soon and im doing my best to find help for my son.
The sad thing is i talk to him everyday and have to be positive for him as he doesnt understand what is going on, which means in turn that i have to make it look like it's good there and all concerned are trying to help him
and that really hurts............
ROXANNE
1nevermore,
Sorry if I repeat some things already mentioned. I would get down about my seizures, then I would see someone worse off then me. They would be riding in a wheelchair, ubable to talk, or blind. I have complex petit mals where I stare, drool, shake my hand for about 30 secs. Some months they would occur around 11-15 times a month. People would seem like in thier faces they would sorry, I had to prove them wrong. The only thing that would get to me was waiting for a ride. I was pregnant twice while on my meds that could cause deformaties, but prayers were answered. They both are fine. I had surgery that didn't work. Then tried meds for years. It's hard, this hepls you find out who your true friends are. I never wanted to talk to family. I finally found the right meds for five years until insurance changed to generic. Now want to fight, and show them what we go through and teach them how important our meds are. My generic caused me to have a wreck and now my daughter had to have two surgeries on her ankle because I wrecked. This made me wnat to fight more. Maybe instead of getting down you need to get involved. Because of all this I can take brand name, because I fought. Get busy and write Congressman, volunteer with your EPILEPSY FOUNDATION, do something to get out of depression. That is what I had to do.
Roxanne
Oh great, now I'm finding out I have high blood pressure and will probably wind up on meds for that too.
For those of you who have mentioned welcoming death, SUDEP, or possibily considering suicide. I would strongly recommend that you seek some professional help. It is available if you take a tiny bit of effort looking for it and if you mention your thoughts about wanting to meet the 'Green Ripper' they will be tripping all over themselves trying to help you. The same goes for those of you who are suffering serious depressive problems. To both groups I would suggest that you speak to your doctors immediately as certain epilepsy medications have side effects that could be causing your problems and a switch in dosage or the med itself could clear up your problems immediately. Don't just sit by idly and say "Woe is me.".
For the rest of you who don't really have these problems, my response is; PUHLEEZE!!
Whine all you want, but it won't change the fact that you have epilepsy. Look around you. There are lots of people who have much worse problems than you do.
My cousin has throat cancer and and a beautiful wife and daughters to worry about. Epilepsy? He'd trade with me in a second if that were a choice, but it's not. Both of us keep our heads up and deal with our personal problems as best as we can. I can't drive (and nor would I want to). So I've resigned myself to living in a city with decent public transportation. I'm sure there are other cities that would be prettier to live in, but it would be kind of stupid for me to do so if I was limited to the couple of miles walking distance from my home. If I get the dough, maybe I can visit those places and deal with the cost of cab fares during my visit. In the meantime, you can ask me how to get anywhere in the city on the bus and I am a volume of transit information. My cousin had to fight with the FAA for the longest time because he wanted to get a pilot's license. He was successful. He has things he wants to do and works to get them done within his limitations as well.
Either of us could cry in our soup and hope people feel sorry for us, or we can pull up our suspenders and hope for the best.
Think about the guy you see every day on the street in the chair, would he rather be up off his wheels and striding briskly beside you? Sure, but he's stuck with what life handed him as well. Complaining about having epilepsy is akin to complaining about being allergic to milk or ragweed. Complain all you want, but it isn't going to change things. I'm still going to get the sniffles and sneezes every fall for the rest of my life, and if I were stupid enough to drink a glass of milk I would pay for it dearly with a sentence of several days in isolation in a very small room where the furniture is made out of porcelain.
Matt
You know, when I first read this, I was very upset. So I took a while to respond because I assumed you meant the very best when you wrote it.
However, let us remember that we all need to vent at times. To have a pity party for ourselves, and if you deny you ever do it you're lying. It may not be blatant, it may not even be in front of anyone, but silently to yourself at moments of lowness. So if someone is not handling their condition as well as you lay off. Let them have a place to find someone that relates. Let them learn to handle it.
Epilepsy sucks. Is it the worst thing that can possibly happen in anyone's life??? No. But that doesn't mean it is easy to handle. My teenager is emberassed at times of me because I can't walk right or I'm jerky. The doctors have informed me that my intractable epilepsy will continue to progressively get worse. I was injured in an accident and I have seizures in random areas of my brain, it is not confined to one area. I often go into status epilepticus. I have neuropothy because my cervical vertebrae are cutting off my spinal cord and nerves... I can go on.... There are days that you really wouldn't want to talk to me, because I'm a blubbering idiot! lol.. But most days I pull it together because I have to. It could be worse. I have children. I have to push on. My family doesn't understand, they think I just need to find a "hobby". The doctors won't let me work. I've been fighting for disability and I fought my previous employer before that for unlawfully firing me. I hate having to fight every day. I want peace. But if I want to get up and function tomorrow I know I will have to fight the seizures and shakes and pain to do it.
I read in an email once that if we all added our problems into a pot to pick out of, after seeing everyone else's, we'd grab ours back out quickly. I liked that. Even if I didn't quote it exactly right. lol..
My attitude sucks at times. Othertimes I'm the total optimist. The list of "I can'ts" can be long. But what we have to remember is that we don't all handle it the same. I'm so happy that you can have a pollyanna attitude Matt, but please be patient with the rest. I do so mean this respectfully. Not as an insult just as a reminder.
For those of you not wanting to go on.... Been there. Fight it. You can do it. Talk to someone. Pray.. Something that will give you peace. the sun will come up tomorrow and life will go on. Don't give up. You can't let it win. It's a condition, not you. You are still special, no matter what anyone else says or does. Develope safety nets so that when you are at your lowest you can call someone and distract yourself. And if all else fails take it five minutes at a time, one minute at a time, if you have to. Just get through that one minute...or five minutes...
Hi srchtt3,
I really appreciate your comments. I think you're absolutely right that sometimes we all just need a place to vent, a place to come where other people can relate and be sympathetic. It seems like Matt here places some pretty tough judgment on people who don't always have a positive attitude, and that's unfortunate. Most of us can't be positive all the time. I think your response is the most helpful in this whole discussion, so thank you.
--Evan
Matt -- A gold crown should be placed on your head right now! I truly appreciated reading your observations and suggestions having to do with not letting epilepsy getting the hold of one. And I'm one of the 55-million 'round this world who have it. I think being a part of New York City has helped me carry a "show must go on" attitude, even with a monthly seizure I can count on. Loving life, its challenges, even seeing the wide range of experiences to be had have come to be through my own epilepsy. Sure, it took time after hearing a doctor say, almost casually, "My friend, you've got epilepsy and you're most likely gonna have it the rest of your life." That was almost 40 years ago. There have been social and career walls to climb, not to mention the sky-high price of anti-seizure medications. But I continue to love the time I've been given. No, hearing that one has epilepsy shouldn't keep one's doors closed. Ideally, it'll inspire one to prove strong against what chance has put in his or her path.
Hi Matt,
Phenytoin (Dilantin) gave me osteoporois in less than 3 years at age 56. I slowly went off the Dilantin, while slowly relying on Keppra. I've been off the Dilantin long enough that my bones are somewhat regrowing, and the joint pain started to ease up almost immediately. I'm telling you this because the medical clinic here quickly loses good doctors (they go elsewhere soon). Just locally, I've had 4 different doctors in less than 3 years. My second doctor put me on Boniva after a bone scan revealed the effects of the AED, my third doctor told me there was no bone scan and stopped the Boniva. I stopped the third doctor to save my bones (which means no doctor at all for about a year), until a fourth doctor became the replacement in the endless chain of medical care under Medicaid that follows "The Peter Principle" for healthcare with doctors. Everyone should just go somewhere else!!??
Your notion of "professional help" seems to reveal the Catch-22 loophole that you appear to regard as a benefit. Having "professional help" available (bumpkins or worse?) that are triggered, with any tiny bit of "effort" (official complaint form?), into a rampage of "tripping all over themselves trying to help you" is not help, it is a threat of discouraging hindrance.
The whining about whiners not accepting their epilepsy sounds like pity-pot perfect philosophy in practice. Here, the transit information is out of print, of course Dr. Pangloss will tell you that you can go anywhere you want to to find bus service, if you just find the means to find the means to find the means to find........
Demanding basic Human Rights in any forum shouldn't be catergorized as "cry in our soup" complaining, even if self-righetous toxic do-gooders love such self-frustrating catergorizations for the individual voicing their concerns of rights.
When I requested not to be obligated to drink my milk in elementary school because of my allergies, my request was listed as an insubordinate complaint from someone who didn't know what was good for themselves, with corporal punishment administered by all the helpful professionals. I guess we all have to pay our stupid sentence for having such great professional help in every corner, nook, and cranny of society, except where it's needed and rightful.
Tadzio
Dear Tadzio,
It took me a bit to decide how to respond to your letter.
I am sorry for the difficulties you have had with your meds, medical care, and the 'joys' you have had with Medicaid. But reading this as well as some of your other posts gives me the impression that you have a negative attitude about your problems which is also negatively affecting how you have been dealing with it.
I hate to tell you, but I am one of those people who have those really big fun grand mals. So I'm not just a piker spewing platitudes. I have dealt with a lot of the problems that many others here have dealt with, including some of the ones you have described as yours. I could blame the world or I can face them head on. I choose the latter.
Name calling does not make for a cogent argument. Nor does suggesting that people can't get the help they need in this country of ours. Platitudes aren't much help either.
In answer to your question: Yes, maybe some of us should go 'somewhere else'. Tough to face maybe, but realistic. I would love to live on the side of the lake in rural Wisconsin where I grew up, with the Kikkoman soy sauce plant a couple of miles in one direction and the Andies Candies factory a couple of miles in the opposite direction, and surrounded by lots of trees and farms and squirrels and fireflies, but that's just not an option. I need to live somewhere where I'm not required to drive, and the social and medical services are up to speed to deal with my problem. This has an added advantage of living where people seem to be a little more educated about this condition and are less likely to 'freak out' about it, or find it a reason for predjudice.
It' unfortunate that all areas of the country don't have the top notch services that some of us need, but the best we can do is to press politically for that to happen. In the meantime we have to deal with the present and what is.
Feel sorry for yourself if you wish, but that will only cloud your vision of your potential future.
Matt Shelley
Dear Matt,
It's now clear that you were talking about situations outside of your social sphere with your remarks about medical professionals tripping all over themselves with all those people you ascribe a "Woe is me" philosophy in dealing with severe impairments that limit major life activities without entitled reasonable accommodations. From your ascriptions that you now have also asigned to me, it is clear you regard me as a member of the group you chose to catergorize as such, while you now assign additional regarded impairments to me.
My failure is unfortunate for not recognizing your high standards in social standings, education levels, and intelligence levels that preclude any perceived prejudices in your chosen community in dealing with your condition with adequate facilities up to speed, with their location as an additional decisive factor in your capitalized free-will choice.
The political realm was patriotic enough with my transportation concerns to correct my negative view about driving being a requirement in this land of opportunity. In fact, they explained that driving is not a requirement anywhere in the USA, and that it is a privilege that each individual is responsible for making the choice or whether or not to actualize such priviledge, and that I should look at the absence of my motivation to obtain a driver's license as an opportunity to voluntarily get a required photo ID card from the State, which is now also a requirement to voluntarily vote in any election. I prefer to look upon such restricted viewpoints as lacking practicality in living with accommodations in reality, and since I don't wish to run from responsibility, I label such viewpoints as Catch-22 nonsense that may or may not be successfully challenged under our country's great legal systems.
Also, I received the gracious incorrect correction that nowhere in the USA is medical care considered a Constitutonal Right, and that the charities of medical services can choose any restictions that they freely so choose to apply to citizens responsible for squandering their opportunities prior to the onset of impairments inflicted by free-choice lifestyles. I believe the Federal Courts have already issued court orders to the State amending such restricted interpretations of entitlements, but the Federal Troops have yet to arrive to put the body of enforcement into realistic action. Again, I chose to stand my Constitutional ground with my rights to entitlements, and not to scanter away under a faulty guise of self-determination and right-to-work at nothing propaganda philosophies that provide such costly but convenient shelter for lackadaisicals so willing for opiates.
Thank you for reminding me that I have to live with what I can't rise above, while illustrating the hazards of stooping below lesser barriers.
Tadzio
Aah. Sarcasm. I know it well.
I often use it myself as a literary tool, but usually only when I am trying to entertain.
Outside my social sphere? Which one would that be? I am unemployed and have been for too long in my eyes. Not because of the epilepsy, but because I haven't snagged anything I'm suitable for yet. As I don't have a job at the moment, I consider my full-time job to be looking for one. (I have a couple of decent prospects lined up this week, but even with that I still will keep plugging away.) Oh yes, I'm broke too. I think I have approximately five bucks in my pocket. I'm trying to figure out where I can find a few more so I can pay for a few minor things such as rent and toilet paper. I go to the food pantries and soup kitchens in the area for my meals as man cannot live on ramen noodles alone. (If anyone needs the list for the whole city of Chicago, I made one for myself and others and I will be happy to e-mail it to you. Please feel free to pass it on to anyone who might be able to use it.) I am stuck with dealing with the social services in the area for my medical care so I guess I should consider complaining about that. Dealing with state government is like swimming in mayonaisse, it will take a lot of effort to get anywhere, and even when you do, you won't get there very fast.
Driving? I would love to be able to drive. I have a particular fondness for old German cars. I used to have an old slow VW that I loved dearly, and an old incredibly fast and powerful old Mercedes Benz that I was sad to see go. And others in between. Lots of people can't drive and have to use a state ID for their daily lives. That's just the way it goes.
Medical care is not a constitutional right. I wish it were. In the meantime however, there are lots of ways to get medical services that you need, but the coverage is spotty, even from zip code to zip code here in the city, and you need to find it for yourself. They're working on this problem in Congress right this second, and the only way to effect change on this matter is to participate in the political process, with the least amount of effort you can put forward being in the voting booth.
If you are of the belief that I am tossing down blather from an ivory tower, then you are assuming something that is more than a bit away from the truth. Spend a couple of meals in the soup kitchens and you will quickly learn that making assumptions about other people is a personal failing.
Matt
PS: On a personal note, verbosity does not necessarily make for interesting commentary.
Hi Matt,
I haven't received a reply over my concerns below on this forum with Acceptance and Commitment Therapy (ACT), and the seemingly toxic loophole in ACT, so I will pose my concerns with you also.
On a lighter note, I guess the odds are you like the song lyric "Life's been good, I can't complain, but sometimes I still do" much better than the song lyric "Everybody knows the deal is rotten." Your "swimming in mayonaisse" metaphor is descriptive, especially if you don't like mayonaisse.
With 56 years of epilepsy, and the last 30 years in legal battles with insurance, EEOC, SSA, FDIC, IRS, DOT, HHS...all the way to the Supreme Court, the prognosis of three hours to live, after tasting my own puddle of blood on the sidewalk for the umpteenth time, makes the latter lyric seems much more appropriate for recalcitrant epilepsy than the first lyric. My being overly optimistic after graduating magna cum laude in the top 3% of my University didn't stop the prejudice, and my then endorsement, despite a few nightmares, of the first lyric didn't help.
My status of being catergorically needy under disability with Supplemental Security Income is necessarily verbose, as is the entire Code of Federal Regulations, and the rest of the body of the law in the USA and the States. "Less than Words Can Say" by Richard Mitchell, Chapter 12, addresses the impending death of intelligence in the USA with the Plain English fad. Also, I've been cited for verbosity for citing verbose laws, and the Geschwind Syndrome from my epilepsy has been blamed for the wordy necessity of following the laws with the laws. EEOC Rule of thumb: If there's a problem, blame the epileptic!
I've never owned a vehicle. I don't like driving, and for a concern of safety, I stopped driving about 22 years ago. My last bus ride was about 15 years ago. Never been on a plane or a train. Never could learn to ride a bicycle reliably. Never had a paying job after University, and wasted most of my money on trying to find employment before I started to seek legal remedies.
In California, the areas with the better public transportation has the higher real estate prices, and the rents closest to stores and services are amongst the highest. The costs of subsistence living is still going up, the payment of entitlements for subsistence living is still going down. The district congressman is most famous nationally for his complimenting a self-proclaimed conservative terrorist for having the true patriotic spirit. "Everybody knows, everybody knows, that's how it goes, everybody knows."
Medical care is a Constitutional Right, compliments of the USA enforcing treaties of Human Rights for all parties involved in the treaties, and the USA is one of the involved parties. Everybody can find the Hope Diamond of health care, they just need to find it themselves? What happened to the Social-contract?
As with Motivation theories, and Positive Thinking philosophies, but not buried in as much gooblygook, ACT relies on accepting in the best way what can't be changed: "Acceptance refers to accepting aspects of epilepsy that the patient cannot change." Also, the problems (impairments) with epilepsy are divided into two broad classes, clean impairments of epilepsy and dirty impairments of epilepsy. Everybody has their own experiences and value judgements that might or might not correspond to another's "clean" and "dirty" epilepsy. Using synonyms doesn't help with such loaded concepts. Seeking clarifications with "more simple" problems, such as "pain": "ACT divides between the physical pain you feel and the way pain interferes with your life." The first is clean pain and the second is dirty pain. Epilepsy confounds this artificial bifurcation despite advanced technical semantics, as do all other impairments sans confounding assumptive simpler semantics. It doesn't make any sense that screaming at the right hand is clean epilepsy, while screaming at the left hand is dirty epilepsy. When does acceptance of impairments become dirty or clean? When does denial of impairments become dirty or clean? When do proclamations about other people's expressed problems become dirty or clean? What are the "who, what, when, how, and why" factors of what can and can not be changed with epilepsy? With epilepsy pervading all major life activities, is "that's how it goes" acceptance or denial, and is it clean or dirty?
Tadzio
Second that! Well said, Matt.
Cheers,
Andrew
Well said Matt....
Very well said Matt......
I did not think this would happen to me again. i was seizure free for 9 almost 10 years and also off medication.
February of this year life changed again, my seizures started again.
this time i feel so lost since it is nothing like before. i do not drive now, also asking for rides. my parents drive 4 hrs to visit and stay with me, since they want to make sure i am not alone.,
i do have a very supported husband. my neurologist has taken me off work since august of this year, since i started having memory problems ( can not work as a nurse with that type of problem)
dealing with medication changes, therapy.
every night i have noticed that i feel like screaming, wanting to cry, shaky. THIS IS NOT ME.
I AM STARTING TO HAVE FEAR NOW.
WILL SEE HOW NEW MEDS WILL DO FOR NEXT 3 MONTHS.
I DO NOT KNOW WHAT TO THINK ANYMORE.
I AM A 46 YRS FEMALE AND MY PARENTS ARE IN THERE 60'S, WHO WOULD THINK THAT THEY WOULD BE DRIVING ME AROUND.
DONT KNOW WHAT TO DO ANYMORE
THANKS
Dear weeta
i just know how you are feeling right know ... i know its hard ... but i'm sure you are strong enough to fight it one more time don't let this silly illness stop you you still have something to give to this life and so what you can't work as a nurse there is a million other things to work at its never too late to learn ... i wish you do agree with me ...and belive me at least you have a supportive husband ... and thats great to have good pepole around you "not judging you as if you have comitted a crime or so " belive me its not the end of the world continue your life ... and fear nothing but your creator
live free .... and think no more about your illness as if its going to stop you from living....
Best wishes;
Nancy A.J
teachergreen
I understand perfectly how you feel. I just got told today I shouldn't be teaching by my neurologist. I will be going on permanent disabilty. If I find another type of job, WHAT? It's probably better for security sake to take the disability. What a slap in the face but it's the right thing to do. It hurts so much all the hard work I've put into my career. I love teaching.
I will be so bored. I'm not the stay at home, decorate the house typeof person.
I am 47, female and have seizures for 16 yrs. I guess I'm just blessed to be alive. I think I my try to meet other epileptics in my city. Maybe we can play tennis, the guitar. There must be some support groups out there.
Maybe we should listen to our bodies my teacher friend told me. Could I help at senior homes or will they not trust my epilepsy?
I take the dial-a-ride bus sometimes one way to the store and then walk home. I'm sure it is uneasy for my husband when I do this. I don't do it often.
Other people don't mind giving us rides. I hate to ask but it's the safest way.
The intensity level on the vns could not be increased. Vimpat is my new med. I already take dilantin and lamontrigine(lamictal). We'll just see how the new med. works.
Wow, almost seizure free for 10 yrs. This is amazing! It stinks that seizures had to come back.
Told my mom today this no work news and she sounded compassionate. My parents don't live close and my sister has never cared about my condition. I told my mom I'm lucky to be alive.
My life's not over yet, I just need to plan what to do with and hope for the best. I pray everyday.
Don't give up!
Hey weeta,
I don't think it's unusual to have a seizure after stopping meds. I tried the same thing and my doctor warned me ahead of time that in most cases a seizure will come back. And, she was right, about 2 years after I had a tonic clonic just an hour after I went to bed. It's surprising to see 10 years without one. Wow!
I keep reading about non-supportive husbands. What the F@#$ is going on here MEN??!!! Weeta, Seriously, it's NOT your fault, it's not your fault, it's not your fault, IT IS NOT YOUR FAULT. NEVER stop reminding yourself of that.
What medication are you taking? Memory problems, and some other stuff you're reporting can be temporary but they can also be a sign of overdosage. If you haven't reported these new emotions and stuff to your neuro I would do that today, no delay. He can get a blood draw to see what your drug levels are. I take Lamictal, not sure what you take.
I can understand the embarrassment of having to get rides but you're not alone. My old friend had MS and couldn't walk anymore without a walk. He was in his early 40's. I hope you can understand you're not alone and there's nothing that you need to be embarrassed about.
Cheers,
Andrew
You know, I'd probably hug the Grim Reaper like a lost brother right now.
Hi dm_creger,
My life-time temporal lobe epilepsy, with now secondary tonic-clonics partly controlled by Keppra, gave me such a Geschwind Syndrome between language and inter-ictal phenomena, that the Grim Reaper ran away from me and my studies with The Devils' Notebooks of Dostoevsky soon as I opened my epileptic academic mouth, just like employers ran.
Tadzio
Here's the real deal, people... Sugar-coat it all you want to, Epilepsy is a hard-core burden to bear. There's no positive outlook for anything.
When I had my first seizure in 33 years, I thought that I was lucky to have a job that I could telecommute to. Now, I have a new supervisor who considers it a 'luxury' for me to be able to work from home. I've been passed over for promotion, denied formal training and am expected to support equipment I've never worked with, much less seen. Not to mention that, in the last two months, he's fired two other workers that were telecommuting. There's only two of us left, and they've hired four more at the office - you do the math
I'm not able to keep up due to the fact that I have to 'learn on the fly' and have been denied access to or have had to learn by word of mouth, information about new software and hardware. All that's left is for them to determine is that I'm not proficient and lay me off.
He won't honor the previous policy, agreed upon my by last supervisor, to allow me to work extra so I don't use up vacation days when I have a doctor's appointment. Nope, I can have 40 hours in for the week and he'll whack vacation /sick / personal hours in a heartbeat, without me asking.
I'm just waiting for the axe to fall.
Where is that going to leave me? Considering that I live in the employment armpit of my state, and I own a home away from any public transportation or population center that I could possibly be able to walk to, nowhere.
I'm facing not just losing my job, I'm going to lose my house. Being unemployed is going to put a strain on my marriage, too. If there's one thing that will split a couple up - no matter how strong the relationship is - it's money, or the lack thereof.
With Epilepsy, my life is simply done for. No one is going to offer me employment if I tell them I have Epilepsy. If I do get a job and have a seizure on the job and answered 'No' to the question "Do you have any medical issues that would prevent you performing your duties?" (or something similar), they can dismiss me without any repercussions. How can they get away with that? Because I lied about Epilepsy to get the job.
I went from:
being a successful 46 year old, independent southern male, a veteran who had earned Expert in every driving badge the military had to offer, living in NASCAR country, getting ready to buy a sportsman car
to a
46 year old, dependent veteran who couldn't drive himself across the road for a pack of smokes, having to bum rides to doctor appointments because my neurologist is 2 counties over, facing unemployment because he's failing at his job.
Like I told my wife the other night, "Right now, I'm worth more dead than alive." (I have a $200,000 life insurance policy through the VA).
Don't you dare tell me "At least you have your health - it could be worse." I'd rather have a disease that everyone knew could kill me than this affliction that no one understands and might not kill me.
Maybe a bus will hit me or something.
Wait, didn't I just say there's no public transportation where I live?
See what I mean? insert <sarcasm> Life just ain't fair...
To you Dm-creger you have already done things i wish i could have i am young still only 27 years male and from the age of 13 -18 trained by my father the joys of sniping he is an ex-army sniper i was trained to be special forces for 5 years. I also took a lot of martial arts and atained a red belt in three different forms, only red due to black requires registration in every state you go to for your hands and feet as deadly weapons. I have delt with epilepsy for 12 years now. I spent 3 years rebuilding a classic 1969 camaro to be my first car and had my first seizure 3 days prior to my 15th B-day. Most kids are getting learners permits on that day i spent in the hospital. I hate the seizures yet live each day to the fullest, I had to face the hard truth of my "CONDITION" at the age of 15 and that i could go into a seizure at any time and not come out, I wish I could've gone military but the rules state seizure free for 5 years prior to enlistment. I have a wife who is 36 and has stood by me for the last 3 years through more seizures than I care to remember. Public transit is very limited here in the town I am in yet I work day in and day out 40+ hrs a week.
I suggest you find a support group/psychiatrist to help you, just remember you have acomplished things in your life that I have only dreamed of and I tip my hat to your service as I do all veterans and active soldiers who do and have done that what I couldn't do but wanted to.
You have done things I will never have the chance to and due to federal law which i have sued several companies for not obeying you do not have to disclose your medical info to due to HIPPA and also you can't be denied a postion due to a disability. I salute you sir but at the same time wish you would look at the good things you have done, and have yet to do, for it is possible to live a good life with seizures. It aint easy to deal with but life is hard, Semper Fi my friend.
I don't know, maybe it's because I don't understand your point of view. I can drive, I have a job that isn't on the brink of "axes falling down". I don't see 'red lights' telling me to stop. I see green lights telling me to go.
One of the best things you can do in America is work for yourself. You can find work at home that can earn money. If your wife doesn't understand that you're doing the best you can, well, I won't go there.
I can't make you want to live, but look at this veteren below. He's legless, and he finishes a marathon. Do you think he drives?? Do you think he works in a formal role at work? Sure, he probably lives in a less rural place than you appear to, but those are sacrifices that have to be made to adjust. I pity your situation, but I don't pity your attitude. But, then again, I'm not in your shoes. I'm sorry that you see things so bleak. :(
Cheers,
Andrew
Umm, Andrew, you don't say where you got the picture. (It looks like an unattributed professional, copyrighted photo, but I'm speculating.) When you found the picture, did you do any research about the subject's life? It is entirely possible that he drives. My father was paralyzed from the waist down, and he drove with hand controls.
Of course, I respect the man's evident accomplishments. You just haven't convinced me that it's appropriate for you to wave him in front of us to prove to people with seizure disorders how fortunate they are.
New Jersey:
It's not copyrighted:
Right click the picture and then click "properties". To find out where it came from.
http://www.stripersonline.com/surftalk/showthread.php?p=2528673
http://www.clipsyndicate.com/video/play/466642
discussion/977336
Hi everybody,
The newspaper article listed on the other website seems to be copyrighted. The archived article, other than the first paragraph, and its accompanying archive photo there was listed as omitted, without a trial membership, then payment, even for "individual use."
The closest I came to a copyright "conflict" was over the MMPI-2, when a few "too many" re-phrased illustrations (less than 4 questions out of 567) was cited by me on another website extremely critical to psychological multiple-choice testing techniques. Legal representatives of the copyright holders had all direct citations from the MMPI-2 from all the posters removed under duress of threatened legal actions.
Many of the "questions" were everyday phrases, like the old statement "I like red sports cars." The conflict didn't grow like it did over seeing "spiders" or "Angels" in public domain inkblots.
Copyright enforcements/permissions are very fickle.
Tadzio
Hi apmast,
With driving being the most frequent and first "privilege" to be removed in even minor lapses of consiousness, your not seeing any 'red lights,' and only see 'green lights,' makes it sound very dangerous with any intersections somebody else might be crossing while you're making your own perceived headway. Many major life activities with epilepsy require a higher degree of caution than average, not less.
Tadzio
Tadzio,
Sorry, I wasn't clear enough. It was metaphor, as in "red lights" meaning that a person sees obstacles and they just stop and give up. And, "green lights" meaning that a person sees obstacles and they don't care because they see them as opportunities.
Cheers,
Andrew
Hi apmast,
Stacked metaphors often result in sweet gobbledygook that only makes sense to true believers of Dr. Pangloss. I like to think that I disagree with the latest A.C.T. fad, because premature acceptance of oppression more quickly leads to defeat, but a blind denial of any limits as result of a potent elixir that has poisonous side-effects, might even be worse.
Tadzio
Again, I have no clue what you're saying! I don't think you realize how much I'd like to understand. I wouldn't keep replying if I didn't want to understand your point.
Cheers,
Andrew
Hi Andrew,
I responded to your other posting below. Everything starts to get lost in very long forums here.
I would probably get into more trouble if I tried any marathon. I use a gps unit to keep my legs in sync/count (it works somewhat somehow), and to keep my sense of location and direction while walking. With slight partial paraylisis on my right side now, and a next to total loss of ability to form new mental maps of location and direction, I recovered from my frontal subdural hematoma that ER gave me the moniker of 3Hours2Live without emergency neurosurgery about 39 months ago. Left versus Right is somewhat of a problem too, since epilepsy had shown a preference in affecting my left side.
I stopped driving about 22 years ago, with a perfect driving record. I used the bites on my tongue as indication of degree of danger to my driving, since reported amnesia is frequent for more moderate to severe partial complex seizures. Secondary tonic-clonics became very frequent about a decade later, with a severe one giving me the head injuries with the hematoma. A major paradox is, while some are divinely ecstatic, my partial complex seizures are usually very unpleasant, and a secondary tonic-clonic is a major relief from clusters of them, though physical recovery afterwards is a pain. Simple partial seizures gave me visceral sensations and a wide range of verbal behaviour impairments, from speaking-in-tongues to mutism, etc. all my life. Being kissed by the gods was a major benefit in the University, but not so great in informal job interviews. My Tadzio/Puck effect was lucrative for a while, but the flip side was like an epileptic version of the movie "My Own Private Idaho."
Tadzio
I have a 17 year old son with autism and epilepsy. It is hard but you can't give up. Did you see the 60 minutes where the mom had epilepsy? She could not hold a job, drive etc and they performed a surgery to put a device in her brain to stop the seizures. It worked for her. I don't think you should ever give up hope. Change your meds or your doctor. We are on our third medand third doctor. Still having seizures. Less frequent but still happening. I think there is more awareness and at some point the techonology will catch up with the problems.
I hate my life too. I used to work, be important, be independent. I was diagnosed 9 years ago and it's been all down hill from there. I had a grand mal so bad that I hit my head and neck and caused a blood clot. It took my doc at the time 5 days to admit me to the hospital even though I called and told them I thought it was bad because I had blood running down my face. By the time I was admitted, the blood clot went to my lungs and I almost died. My chances of having another child are gone because of all of my meds, I can't drive, I can't work, I can't even volunteer at my son's school because I have no way to get there. I feel like my life is wasting away. I totally depend on my husband and I HATE IT!! I feel like I'm in a fog all day from my meds and now I am fat to boot. I have had days where I wanted to end it all feeling like my husband and son would be better off without me. I feel like a burden. Then my doctor's just give me a new anti-depressent. Some days I am at the end of my rope. I want to know when things get better. When do I get control of this disease. Or am I just waiting for the big seizure to kill me. When does it get better???
I feel the same way you do. How do people support each other who have the same problem? I was a young talented healthy student, and despite early signs of epilepsy I got my bachelor's degree. Then the complex partial seizures began to develop, which are best described as pure horror combined with an outward loss of response. This and my automatisms were enough to get me stigmatized, fired, etc. People see me wandering back and forth in a coma and figure I'm 'really screwed up' and decide it's best not to associate with me, just to play it safe. Meanwhile my experience of a seizure alone is enough to make me want to end my life, regardless of how others perceive it. My seizures are totally, utterly horrifying - every time. I feel like I'm a lazy burden on everyone around me; without my parents I don't know how I'd deal with the horror of my 'type' of seizure (everyone's seizures are slightly different). The horror for me is absolute - it's like dying...each and every time I have one. I'll be getting out of my rut, getting back into the rhythm of life for 5-10 days, and then WHAM, I'm forced to confront DEATH in the form of a seizure. It has basically crippled me, and all the complaints others mention on this post are familiar to me (docs, meds, etc). I'm almost 35 now, and my life as I knew it simply ended about 10 years ago when the complex partials started happening. Since then I have achieved little or nothing, all my opportunities have passed me by, and I have suffered the horror of seizures on a regular basis. To top it off, it shows no signs of leaving me and medicine shows no signs of coming up with a real cure. The signature effects of the horror of my seizures are identical to the signature 10 years ago. It's like they're invincible; unstoppable; uncontrollable. I have to go
While reading your posting from 11/4/09, I finally felt like someone got what I have been feeling. I would love to talk to you.
clfboots@aol.com
I hate my life and for what Epilepsy has done to it, SUDEP can't come quick enough for me. I guess I'm not going to be around here much longer, in a few weeks I'm looking at being homeless. I'm sorry if this hurts anyone here, but I'm not going to lie about my feelings.
Hey, I'm not judging, ok? But depression is often a side effect of medications for epilepsy. YOU NEED to see someone. There are free services out there. YOU have no idea if this is depression talking or not and we all die eventually, so there's no use in speeding up the process or hoping for a sooner death. Think of the millions upon millions of humans that are never conceived and never have the chance at life. If I had to choose between life with epilepsy and no life at all, I'd choose life with epilepsy. Just heed my words and CONSIDER that you really don't (in your heart of hearts) want an early death. CONSIDER that you're possibly depressed, frustrated, etc. Think about people dying right now of cancer, painful and slow death and they have no choice like you to life or die. Remember, we all die. You're not alone here, over 3 million people have epilepsy, more than Parkinson's, multiple sclerosis and cerebral palsy combined!!!! YOU ARE NOT ALONE.
Cheers,
Andrew