Epilepsy Foundation

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Speak Up Ohio!

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

Members: 59
Latest Activity: Aug 17

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EF Chapters

Started by Thomas Murawski. Last reply by Debi Langsdale Aug 2, 2011. 2 Replies

Newly Diagnosed

Started by Patrick Fahey. Last reply by Missi Wallace Oct 7, 2010. 2 Replies

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Comment by Missi Wallace on April 25, 2014 at 12:11am

     It's kind of ironic that epilepsy in Ohio has taken a back seat to Autism. There are tons of family members who deal with autism that are pushing for their kids to get included in NT events. So many venues are willing to adjust whatever needed to host autistic people.

     But many of these autistic people also battle epilepsy. Autism has a new awareness in the public eye, but they see epilepsy in a way reminiscent of old movies - drop and flop - and it creates an uncomfortable feeling. Most people can observe an autistic person from a distance, realize how different they are, and feel empathy for their family.

    But an epileptic person can seem so normal, then crash into a situation that typical NT's don't know how to address. Since each epileptic has their own way of having seizures, there is no general public info on how to see/help/address someone who is seizing.

    My 10 yo is on the autism spectrum. He also has epilepsy. If we're in public and he has a SPD issue people seem to be accepting of his differences. If we're in public and he goes into a simple partial seizure (flapping hands, repeating words, hyper happy to evil creature, and LOUD) then I get stares and rude remarks about his need for ADHD drugs.

     There is no good media about epilepsy, like there is for autism. It's not a popular subject, hard to define so NT people will understand and except it. There are so many co-morbid symptoms, yet NT's seem to fear the brain abnormalities that go with epilepsy.....

      Epilepsy is an unknown quotient, can strike at random, doesn't follow any rules. Even our neuro has had trouble with my son's abnormal seizures, hasn't been able to explain them. None of the five neuros' he's seen can agree on what is happening, other than saying, "Oh my! His head is a mess!".

     There isn't media aimed at NT's about epilepsy, it's a hidden disease. There are too many variables in epilepsy for it to become a media subject aimed at public awareness.......but we can hope!

Comment by Mary Jenkins on January 5, 2014 at 10:06am

I'm looking for a parent of epileptic children support group in my area. I live near cedar point about midway between Toledo and Cleveland. Anyone know if there is a group near me? If not anyone have ideas on how to start one? I know there has to be more parents with epileptic children in my area.

Comment by Lizzie on October 4, 2012 at 9:51pm

I wish I knew people who had seizures and also that lived in Ohio back when I was in high school. I could've really used a friend who understood. Not that I couldn't now lol but it would have been easier!

Comment by joe on September 8, 2012 at 3:18pm

I want to send a Shout out to all of those in Ohio who suffer from Epilepsy. I have lived with it my whole life and I work today but i know some are not able to do so. I have had mine controlled for many years and have narrowed it down to only taking one Medication Mysoline. I am happy to just be taking one insted of 3 like I was.

Comment by Debi Langsdale on May 18, 2012 at 11:32am

Fellow Ohioans ... 

If anyone will be attending the Cleveland Marathon this Sunday, May 20th - stop by and visit my son and I.

We will be manning the Epilepsy Association's charity tent!!!

 

We will be passing out information for Epilepsy Association's Virtual Run during the marathon also.

If you will not be at the Marathon and are interested in recieving information on how you can support virtual run  ...  send me a message.  The cool thing about virtual run is that you don't have travel to any specific races - therefore, anyone can support EA regardless of where they're located!

Comment by Missi Wallace on January 14, 2012 at 10:44pm

Even tho we don't have much in the way of EF groups, try contacting your local MHA and NAMI. Many of these people/parents are dealing with multiple dxes, including E, that are causing mental health/behavioral  issues. They know all the local resources, especially the unadvertised ones. They can even find you a parent or support advocate and support groups and outtings. In our area, these people are amazing!  

Comment by Lori Solomon on October 28, 2011 at 2:45am
Hi John.  Have you talked with any of the local EF organizations.  They may be able to offer a starting point.  At its very base, the political leadership needs to understand how the dynamics of epilepsy impact society and what needs to be done to address these issues.  As someone with a background in government, I can assure you that the Governor and others are more likely to respond to something that is concrete.  Is there something specific that you are talking about? 
Comment by JOHN M MILLER on October 5, 2011 at 10:47am

Hello joanna I have had epilepsy for 39 years and if you like to talk just give me a call at 740-376-7257. I am not very fast on this thing and then we can come up with a plan to talk so it wont cost you to talk. Look forward to talking.

Comment by Doug on October 5, 2011 at 9:10am
Joanna, the nearest affiliates of the Epilepsy Foundation are either in Columbus or here in Cincinnati. We (Cincinnati) have recently been doing some outreach into the Huntington, WV, area in the form of community education, epilepsy awareness, school nurse training, epilepsy clinic at Cabell-Huntington Hospital, and monthly support groups. For more info go to our website at www.cincinnatiepilepsy.org or call me at 1-877-804-2241.
Comment by joanna frances snyder on October 4, 2011 at 8:33pm
my name is joanna snyder and i am from jackson, ohio, and we do not have an epilepsy chapter here, can you tell me how to get one started.  We have noone to talk to about what we go through as a family, my husband has had it since he was 9 years old and it seems to be gettig somewhat better, but it would be nice to talk to other families that go through what we do.
 

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