Sorry I just needed a place to vent my frustration with all the damn powers to be for someone in E to listen and help us get a support group in our local areas.

That's where the focus comes for me to shake the shoulders of some big suit who may not a clue as to what we suffer. And if my happenstance they do, then shame on them.

OkayI feel better, but maybe I hurt some out here. Not my intention but the system as it now stands sucks!]]> http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=23&threadid=85581 2009-02-06T20:14:03 -05.00 charanna 4 http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=23&threadid=85362 2009-01-30T03:44:55 -05.00 cmscribbles 2 szymanski (epilepsy foundation staff) can't make paragraphs :( which makes her post more difficult to read she asked me to post threads about this. So, I'm just going to copy and paste what she put in her thread in the lounge... with paragraph breaks.

it's worth a repeat anyhow...

from szymanski:
I cannot stress this enough -- there are scam artists on our forums now, and right now I can't ban them (technical reasons). Anyway, please know that you should NEVER give money to anyone you find here, or give any personal information out. ALWAYS BE VERY, VERY careful.

This is one version of the message that's going around. Please feel free to pass this warning along (feel free to put it on all the forums, all rules about not posting a single message everywhere doesn't apply to this, because this is very, VERY important):


phishing spam message recently sent to several forum users:
(minus the contact info which I deleted)

Greetings in Jesus name, My name is Mrs.Roselyne Caron ; I am a dying woman who has decided to donate what I have to you/church. I am 59 years old and I was diagnosed for cancer for about 2 years ago immediately after the death of my husband who has left me everything he worked for and for the fact that the doctors told me I will not last longer than some months because of my health,I decided to WILL / donate the sum of (Euros4.500 000) Four million Five hundred thousand Euros to you / church for the good work of humanity and also to help the motherless and less privilege ones and also for the *****istance of the widows in like manner. I wish you the best and may the good Lord bless you abundantly and add more days to your life. Please use the funds well and always extend the good work to others Here is the Contact information of my Attorney below: [...] And tell him that I have WILLED (Euros4 500 000.00) Four million five hundred thousand Euros to you and I have also notified him. I know I don't know you but I have been directed to do this. Thanks and God bless you. NB: I will appreciate your utmost confidentiality in this matter until the task is accomplished as i don't want anything that will jeopardize my last wish. From Please call the lawyer immediately you send message because is always busy to check up the mail . Mrs.Roselyne Caron]]> http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=23&threadid=85131 2009-01-24T09:48:52 -05.00 2steveb 1 So Who, What is Normal

Speaking as an epileptic to all people with or living with epileptics normal is considered what is socially and culturally acceptable but, social and cultural will change normal thus altering the concerns of cognitive social psychology. !STRANGE AH if you were born with epilepsy you are 'normal' you just have fits, simple enough ah but, if you have had a bad hit to the head you probably will end up having epilepsy because of brain trauma. It is from this that (from experience and a degree course in psychology i speak) i can say, epilepsy is not your (there) problem it is cognition. Because of the brain damage the cognition (thinking processing response time) causes you/them to appear to be not 'normal' thus although they/you may pysically be appealable a patronization comes in between them/you and the 'partner' and 'we' become unlovable as people and sex objects. We are viewed as ohh or ahh or poor thing not come here i want you now? This dilemma is further complicated when you end up on sticks/wheelchairs. Phenomenological psychology at face value can be a most beneficial for understanding and/or revealing an individuals "self" through its uninterrupted methodology through the use of Free *****ociation Narrative Interviewing (FANI) to establish a subjects "self". This is where there is a difference Basically it is all about and quite simply means, 'talk to them/us, give them/us time to process what has been said and to think of a reply. You will be very surprised at how clever people actually are and--how sexy/lovable. WHAT? Simple really, as Socrates once implied 'why should society follow each other like sheep. We all have an opinion and a brain to process our thoughts. Why then should we accept 'normal/fashionable' simply because the majority says it is. Equally, Normal is based on a majority rule so who is right and even if normal (majority of) has an opinion why cant we challenge it and say 'your wrong?. I have a different life style to you. Am i wrong or are you, should the answer be based on a survey of 'majority rule (what's normal) or should we accept that we are both right and then look for a common ground that we can both agree to be normal. Why should we be alienated because we need sticks/wheelchairs and have fits.

learning how to cope with epilepsy

Self consciousness, it has long been considered that this is innate it would follow therefore that attitudes accompany our innate self consciousness due to our automated behaviour to a situation. For example, at maturity we look to the opposite gender! Generally speaking this drive is both innate and an attitude based upon the implementation of monogamous attitudes from parents, media and society. Religion with its implications that "self' is our soul is questionable based on our religious in doctoring and the society we live in yet can also be used to create attitudes.
'What's this to do with epilepsy'?
In modernistic terms it is argued that self consciousness, attitudes and our innate self is dualistic, that is to say they are one of the same. It is as important though to accept that due to an attitude (triggers for seizures) we all have behavioural responses, some good some bad and these can lead us to have an emotional deficit. To fit into our society we have to learn how to behave, alter our attitude! In doing this it can take people out of there comfort zones leaving them uncomfortable, nervous or even vulnerable and more prone to fits.
Attitudes and self consciousness are innate/ media and society based constraints that are imposed upon individuals as they grow and develop from child hood through adolescence into adulthood where, the links and chains of opinions are enforced upon the next generation. This is why it is vital that we and our nearest and dearest understand and give us a wide birth.
A prime example of this can be seen in the modem child of today, there are few who are aware of the constraints of familiarity and or respect to there elders. This "mind set" is a complete change from thirty years ago clearly indicating that "attitudes" towards teaching respect (to create an attitude) has changed. It is apparent that, in this instance child rearing is not innate, it has to be taught but, when a child is in danger it is a self conscious innate response to protect it. So, it is that same attitude that we all need to adopt to ease the pressures on both the epileptic and the family/friends.
I introduced this article by referring to attitudes/ triggers and how they accompany our innate self consciousness due to our automated behaviour to a situation. Hence, the starting point for this topical research is as old as researchable recorded history, from the m***** attitudinal hysteria towards the Jews before the Second World War to the good will drive to save the planet. These are all attitudes which when reaching a point of hysteria can affect self consciousness and can become an inherent attribute for the innate self "US" AND OUR SELF CONFIDANCE, (I wont go out just in case---).
The concept of Social psychology of self could be summed up by Solomon Asch (1956) where his studies into "normal" (what is socially and culturally acceptable) groups, there social influence and places they are at will result in a form of conformity. This however is a resulting opinion of a minority (US) not a majority and over looks the individual. It is this attitude that affects self consciousness and is the frustrating difficulty, helping people to help us help ourselves?
As "We" the human race are from many differences a starting point for this researchable history into attitudes and self consciousness is through the eyes of religion- self-soul and the inherent parental/ cultural dis/approval of behaviour. Is society to be held accountable for these behavioural attitudes or society for en doctoring the youth. Either way both are based on a common ground/need, that being cohesion based upon a fear factor.
Contrary to this social influence on behaviour and to re enforce the point raised earlier With regards to the frustrating difficulty in researching social psychology of self we have a strange species called the individual/non conformist. (An example of such was reviewed by us in the mirror)
In a drive to research self and attitude "Unfolding discourse analysis" in post modernism has been researched by (McGuire, 1985, p. 239) raising the concept that "attitudes are locating objects of thought on dimensions of judgement and placing it in a hierarchy (phenomenological narratives). Equally Potter and Wetherell in there research are more interested in how people talk (cognitive processes). This turn to language research though is seen as a model of contained, rational and stable individual processes. For now, in short phenomenological narratives are pictorial descriptions, used as a method to converse with 'society', this method is used unconsciously due to hemispheric damage (a side of the brain). For epileptics who acquired or were born with the disadvantage the cognitive processes are more intact. This is partially why 'we' are all different, that and the fact that the pills we have to take change our personality.

Cognitive and behavioral disorders often overshadow seizures and can be the greatest cause of impaired quality of life. Patients with epilepsy may have cognitive impairments, which effect attention, memory, mental speed, and language, as well as executive and social functions. Furthermore, these problems often go unrecognized and, even when identified, are often under treated or untreated.
Epilepsy has long been recognised and invoked as a significant ingredient in the mechanism of sudden unexpected death, particularly in the setting of status seizures, trauma, drowning's and aspiration of gastric content. However, a wider appreciation that epilepsy per se may be a major cause of, rather than contributory factor to death, is a relatively recent concept which may not be widely comprehended or accepted by the community at large, epileptic patients and their physicians, and perhaps some pathologists. Since these cases present as sudden, unexpected and often unexplained death, they will fall under the jurisdiction of the coroner, and in most circumstances require specialist forensic pathological investigation.
Like that other acronym SIDS (sudden infant death syndrome), the term SUDEP (sudden unexpected death-) hints at a relatively stereotypical series of circumstances allied to an unascertained cause of death; but unlike SIDS (or perhaps the more controversial SADS (sudden adult death syndrome)), the field of potential causative mechanisms appears narrower and is arguably better delineated, holding the promise of effective intervention strategies.
Much research over the past few years has pointed to complex cerebral and cardiorespiratory factors, which individually or in concert may result in death during or shortly after a seizure. If the task of clinicians is to predict and intervene, the role of the forensic pathologist and coroner might best be seen as recognition and comprehensive investigation so that the true incidence (at various points in time) is documented, and effective multidisciplinary remedies implemented. A vital first step along this path is uniformity of approach, but many factors need to be addressed before this pathological nirvana is attained, some of which may be subject to considerable regional and situational constraints:]]> http://www.epilepsyfoundation.org/efforums/forum/messageview.cfm?catid=23&threadid=84961 2009-01-19T02:07:30 -05.00 3311cj 4