Epilepsy Foundation


Speak Up Montana!

This is the home page for epilepsy advocates in Montana! Join us in our effort to find a cure, stop discrimination and improve access to care and treatment.

Members: 10
Latest Activity: Oct 13, 2015

Discussion Forum


Started by Erica Barker. Last reply by Emilie BOyles Jun 1, 2014. 2 Replies

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Comment by Jenny Hayward on October 13, 2015 at 10:09pm

Exactly! People thought at previous jobs they had to babysit me while I was on the job and never left me alone. Or some thought it would rub off on them so they stayed away. Some people at an old church tried to cast it out of me. But the church I am at now, know that it is an illness. I tell my co workers what to look for, signs to look for just in case but they are generally supportive. Some people just dont know what to do, or they say, "Oh we have several people hold you down and stick something large in your mouth so you dont swallow your tongue. And tell you to snap out of it. Thats what they did 30 years so that is what we must do.' 5 years is a long time to be trusted! Thats horrible but I know what that is like. People look at me sometimes and think and say that I am "Retard" and that I am not all there. Really??

Comment by Erica Barker on October 12, 2015 at 9:16pm

People can think we're possessed. And sometimes I want to say well in ancient times certain cultures/ways thought we were gifted from God. One of my supervisor had drop seizures. So she's a little educated on it. I bet 90% of the people I work with military or not don't know what epilepsy is, don't know what a seizure is, or think we're weak all and all. With me it took 5 years to gain my supervisors trust so I could work on hard floor. One even apologized to me and said she's sorry for douting me. She also said I'm their first person they'd call for a backup/ work. IT TOOK 5 YEARS!!! FOR them to TRUST ME!!!  Come on people!!! Get with it!!! It's the 21st century NOT 1754!!!

Comment by Jenny Hayward on October 12, 2015 at 2:20pm

@ Erica. The people I have run into are afraid of Epilepsy so they are afraid of people that have it. I say the words Epilepsy and seizures and they run the other way or say 'Dont have a seizure around me because I dont know what to do and seizures scare me..' Like I can control it! LOL And some people say I am possessed by Satan and they try to cast him out of me, they say Epilepsy is not an illness but a punishment for secret sins. People are not educated and dont understand what it is. It is sad. Family tells me not to tell people that i have it. WHAT? haha I try to explain to people what to do if and when seizures happen and what happens to cause them. It is one illness that scares people, so they dont read about it. I dont understand why it scares people so much that they dont want to learn anything about it. 

Comment by Erica Barker on October 12, 2015 at 9:47am

I always wonder why people don't understand epilepsy. It's the 4th most common neurological condition (1) Alzheimer's, (2) migraines/head aches, (3) Parkinson's, and last but not least... epilepsy. So it's not the most common but it's in the top 5 most common neurological condition.

Comment by Jenny Hayward on September 25, 2015 at 5:48pm

You are very right Tammi! People are afraid of people with epilepsy because they misunderstand it and are not educated. I was always told by family and friends to NOT tell people I have Epilepsy and to not tell employers I have it. Their reasons.. 1) they thought it was no ones business to know what was 'wrong' with me. 2) they felt ashamed of me. Well you know what? I want people to know I have JME. I want people to know that I have it so when something happens they know what to do and also to be educated. People are always afraid of things they know nothing about or dont understand. People thought they could catch it from me like it was a cold or something. I want people to know it is something not to be fear.

Comment by Tammi Zavardino on September 25, 2015 at 12:27pm

Epilepsy is so misunderstood and we are not freaks or something to be afraid of and that is what I go around doing in my state letting others know this and help train others to understand what to do if you see someone having a seizure. But we all have to stand together to get the word out and be brave enough to speak up to others and for a long time I didn't even want others to know I had this but one day I knew that was wrong and started doing things to help others better understand and it has worked but it takes a lot of work. You don't have to be ashamed of having this problem and let others know it!

Comment by Erica Barker on September 20, 2015 at 10:30pm

Try and get people from other states too. The more the merrier. Are you going to towns of 60,000+? I'd live in a bigger town if I could. I think it'd be cool to be interviewed/in something like that.

Comment by Jenny Hayward on September 1, 2015 at 5:26pm

Good luck Sam! You will meet a lot of us around here! =) 

Comment by Sam Inglese on September 1, 2015 at 11:30am

Hello. I am searching for people with epilepsy for my next documentary film; Greeting Epilepsy. Erica, your story of seizures at work could benefit this piece. I will introduce the country to an assortment of us and conditions and lifestyles around those without epilepsy. I do not want a tragedy. I want to reveal those of us outside the home. I have had seizures since I was 19. What is your most memorable seizure in public?  Sam ambimind65@yahoo.com

Comment by Erica Barker on July 21, 2015 at 10:53pm

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