Epilepsy Foundation

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Speak Up Colorado

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

Members: 45
Latest Activity: Apr 10

Discussion Forum

Support Group in Denver?

Started by Sean Orion. Last reply by Emilia Pollauf Aug 23, 2013. 3 Replies

Newly Diagnosed

Started by Carrie. Last reply by Kellie Towne Mar 18, 2012. 7 Replies

Comment Wall

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Comment by Sam Inglese on October 18, 2013 at 4:38pm

Stop Discrimination and raise Awareness through my next documentary intended for the general public to want to see. I need you and your story. Watch my presentation on KickStarter and "Greeting Epilepsy".

Comment by Sam Inglese on August 24, 2013 at 4:43pm

Hi. I am raising funding for my next documentary which is entitled "How To Greet An Epileptic" where raising public awareness will come from stories about each persons most interesting experience having an attack in public. The intriguing personal events will attract the eye of the general viewer and then the array of types of attacks and public reaction will then educate the viewer who has no association with our condition.  Next, I have almost completed a romantic/comedy screenplay where epilepsy is a secondary/minor issue for the 2 main characters. I hope the fun story will attract the producers eye while keeping the characters epileptic. The audience will laugh with the story first and secondarily be educated by their minor condition. She has only 1 GM in the film and has not had one in over a year. He has Focals on a more regular, monthly. basis. Any referrals for funding of the documentary would be greatly appreciated

Comment by MeganN on August 22, 2013 at 2:46pm

Hi Emilia,

Our son is on Onfi right now.  We just finished weaning him off of Topomax and he has tried 3 other others medications in the past.  He does have cortical dysplasia so his neurologist has warned us that the seizures will most likely come back, but we are living in the moment and thankful for every seizure-free days.

His seizures started when he was 19 months old and stopped when he was 26 months old.  A majority, but not all, were in his sleep.  I don't think he was ever aware of a seizure before it happened.  He has also been speech delayed, so he never seemed to have the words to express himself very well.

Thanks for reaching out.

Comment by Emilia Pollauf on August 22, 2013 at 2:01pm

Hi Megan,

That's great news! I'm glad his treatment is working well for him. Does he take medication? Had your son ever been aware that he might have a seizure before it happened? I imagine it must be challenging to teach self-care with a little one. They can be so full energy and not want to slow down! Anyway, thanks for posting. Best to you and your family. I'll let the community know how the book is progressing.

Comment by MeganN on July 31, 2013 at 9:45am
Emilia thanks for posting! I'm excited about your children's book. Our three year old son has epilepsy. He has been seizure-free for one year and one month.
Comment by Emilia Pollauf on July 30, 2013 at 2:21pm

Hi everyone!

It's been a while since anyone has posted in this group! I'm new to e-communities and want to introduce myself.

I am a resident of Boulder, CO where I was born and raised. I was diagnosed with epilepsy when I was 19. Lamictal is the one and only drug I have ever been prescribed to treat seizures and it has mostly been effective. I've had breakthrough seizures but also gone as long as three years seizure-free! My last seizure was a few weeks ago.

My sister and I are writing a children's book about epilepsy that I am very excited about. I've joined e-communities in part to gain feedback from others about their experiences. I'd love to hear from you!

Hope to hear from you soon!

Emilia

Comment by Jon S. on June 5, 2013 at 12:21am

Hi everyone !

Just saying hi 

Ok see ya ! 

Comment by Sam Inglese on August 26, 2012 at 7:37pm

Tom. That would be great. I just had a terrible event where during my return to Co. from a big family(my side)vacation, I had an attack on the airplane, another in the car as a frirend drove us home, and then, while talking with my wife beside her bed I had a gran mal and during the post-ictal phase grabbed her leg which is in a cast from tearing her ligaments a week prior and tried to massage it and then reached up her shirt. The police were called to help control me and I was placed in an ambulance.....Now she is afraid to even be near me and I saw her for the first time Friday but I had to keep my distance as we discussed matters of divorce and the incidence. Now she is concerned not only about the children, but about me if I have an attack without someone able to physically control me if necessary. Your information would be greatly appreciated. I called the Ep.Fdn. in Co. and the attorney will not be in until Mon. If anyone knows of a service for this type of personell that is fully or partially funded I would be very gratefull since I am on Disability, just starting to work again and now my wife cannot work to help with finances for the children and her rent...Sam.

Comment by Tom on August 25, 2012 at 3:45pm

Sam:

If you are still looking for divorce counsel in Boulder, please let me know.  I can connect you with somebody that can help you out with the issues that you are having.  

Tom

 

Comment by jimmyKIN on August 10, 2012 at 8:18pm

Two things to say. I'd like to see us talk more than it has been in the past.  The second is that Sam, I wish I knew a way to help you but don't live in Boulder.  My GM started four years ago and my kids have handled it fine, sometimes going to report to "mommy" that daddy is having a seizure.  Kids are very emotionally resilient as long as the adults around them are.

 

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