Epilepsy Community

I would say so! Computers, computer sites, TV's, movies & video games can have an effect on seizure status. Polarized glasses &/or screens for Comps are recommended. Or just avoid Timeline. My daughter has seizures & just created her Timeline. So far, she seems to have no problems. Yet, flickering lites/strobes have had an effect on her. But, Triggers are different for each individual. Note the problem in your Journal. Discuss this w/ your DR, too! Photosensitive Epilepsy is Possible!

Have you Searched for other Epilepsy Groups on Facebook? There are quite a Few. W/ Lots of different Info/Input. I'm on Facebook & I have found quite a # of Groups have started their own pages, since November. Epilepsy Awareness Month brought a Lot of PPL together. Also, search for EP Land Group. Just started by a friend of mine. You should be able to join in w/out friend request. But, let me know. I will add you if need be. See my Profile (just clik on Dancer) for Contact Info.

Welcome to Epland (WebMD Epilepsy Exchange.)

Love Candi

I have seizures mayself, and I know that strobe lights can make my seizures break through. How do you suggest that we inform Facebook of this issue so that everyone will not be forced to take this new "timeline" format after a while like what has happened in the past with other new page formats?

Hi j,

Can't be sure, but, I Thought I saw a Petition asking FB not to Enforce Timeline. Not so much for the EP/seizure aspect as people don't want to become another MySpace. Search for the Petition & Comment. The Comments I read didn't sound very encouraging about FB 'listening'. So, the more comments the better.

Now, you wanna share some more about your Journey? I'm 'Listening'.

Love Candi

My daughter is photosensitive and avoids computer screens almost entirely. After stumbling on the original post here by An_242537 I decided to take a look at Timeline. So I watched FB's "Introducing Timeline" promo video, and it looked like the promo itself was going to provoke seizures. I tested it last night--I have software for checking visual sequences for seizure safety. The clip failed the seizure safety test in several places.


So I emailed FB with a screen shot of one of the failure points. Am not holding my breath for a response, but will let you folks know if I hear anything.


Online safety for people with photosensitivity -- many of whom have no idea they have this trait because they might not have any seizures previously -- is an enormous challenge. I write about video game seizure safety on my site and blog .


www.videogameseizures.org
http://videogameseizures.wordpress.com

I started a petition against Timeline since early this month. I hope people will join in the cause which is to cancel Timeline from happening. A friend of mine all ready had a seizure while being on a friends wall witch has Timeline. It is important for people to complain against it. Maybe Facebook will change their mind. This is not a joking matter.

http://www.change.org/petitions/mr-zuckerberg-ceo-of-facebook-remove-timeline-format

Hello js & emt,

Thank You Very Much for the Links. I Agree, these are Very Important Topics. To anyone w/ or w/out Epilepsy.

Emt, Problem?? I heard that once converted/using Timeline you Can't go back to the Old Format. This may be a Big Problem, too. Computer Politics! Sad! I understand the need for More space, but, Timeline needs to be re-programmed so it ain't offensive to photosensitive People. Or at least Warn them, B4 they change. Although not everyone w/ photosensitive issues is effected. It does Increase the chances of someone w/ Photosensitive Epilepsy to have seizures. And We have a Rite to use that site Safely. So, again, Thank You for your Info!

Love Candi

Thank you Candi for understanding what I am complaining about. Now the next question is, do we have a chance to have him to accommodate those who have disabilities and those who do not want Timeline? Can Mark Zuckerberg have some kind of heart and consider us. Do we also have some kind of legal help like with the ADA?

Hi Emt,

According to Hubby: Someone will have to sue Zuckerberg First. He's Probably Rite!

ADA??? Maybe. The epilepsyfoundation.org site has the Jeanne Carpenter Legal Aide for assistance. Maybe they would know. Or you could contact the ADA & report the problem.

Did you find any petitions on Facebook?

Love Candi.

Hello, I was curious about the software you mentioned that screens for seizure risks. I have a son 9 yrs old who was born with cerebral palsy, and has simple partial seizure activity and autism. He has had a VNS implant for 3 years now and is doing well. He and I are both photosensitve and have had history of optically induced seizures and postictal migraines.
I feel we are often the victims of our televisions, and computers as well as the video game systems graphics and color schemes. For myself the onset can be induced by two contrasting stationary designs because of intensity and color in printed amterial as well, but have noticed that more subtle shading and obscure color effects are just as likely in electronic media. Sometimes it is just a matter of going outside on a sunny day, or a cloudy rainy day and I can never predict what will happen.
For my son, his condition limits his ability to communicate, and express the problems until the migraine occurs. I would appreciate any help in being proactive for his sake because he is exposed to media at school and CGI developed kid shows and movies.
Finally, I want to mention that software and website developers often use color palettes that they deem "web-safe" due to system profile compatibility. I would like to insist to manufacturers to incorporate standards toward human compatibility. Adobe, Apple and Microsoft would be excellent partners if approached by the medical community.
thanks for any help possible.
Robert

http://www.kktv.com/enews/headlines/Facebook_Forces_Timeline_Users_Past_More_Visible_137999433.html?storySection=comments

Here is an article about FB forcing its members to use the new format.

Hooty

Hi Kaijufan,

I am very Happy to hear the VNS is Working for your son. I do hope jsolodar responds about the software. I suggest you talk w/ a Local computer outlet &/or repair service. Or use your Search Engine. I do know polarized computer/tv screens & sunglasses are recommended for people with & without Seizure Disorders due to photosensitive issues.

I believe the Best way to become proactive is Education & Daily Journals. Here is what a Friend of mine has to say about being proactive: Wise Advice! It is from another Support Group. Proactive Prescription for Epilepsy - Epilepsy Forum

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

This is a Another Good Article written by Phylis, a member of our family that has done a Lot of Research & written Lots of Interesting Articles you may want to read. This One in particular.

http://epilepsytalk.com/2011/12/04/autistic-children-may-have-too-many-brain-cells/

I believe the epilepsyfoundation.org can help if you would like to educate your schools. Another way to be Proactive!

Save/bookmark & browse their topics/Resources. Join if you Like. But, please, keep us posted, too.

As for "web-safe" it would take some talking. Talking w/ Important People in Both Fields.

HUGS Love Candi

Hi Kai,

Hope you read this. I was just reading that there is to be a Live Q&A seminar for parents Using Technology to Communicate with Developmentally Disabled Children. Feb 14, if interested go to communications.epilepsyfoundation.org You may have to join epilepsyfoundation.org to Register & participate. But, it's Free & so is the Seminar. Sooo. Please Do! Read Their Info/updates on our World. HUGS!

Love Candi

I just heard on the news that FB will be changing Members to Timeline, next week, if Members haven't implemented that program already. I think are we too Late in voicing our objections. I guess the petitions against this were just Ignored. All in the name of 'making space' for new members??? Or just cuz they like the Design???? Who Knows! They may Lose members due to their new format. My Space had/has this Format & lost a lot of People to Facebook. But, I doubt if it will make much difference. Newbies won't know the difference. The least they could do is put up a Warning for people with Photo-sensitivity.

they could just put up a wa rning that says if you have EP or hav ehad szs consult pychison before use.

Just like on the backside of Wii games.

I contacted my neuro last week. I had been playing the bowling game for more than an hr at a time amd he said I should just stick to 30 minutes at a tme then give it a break. I was getting all dizzy when I was playing it longer, and he said that is why he only wants me to play them for only 30 minutes at a time.

maybe you sould only be on the FB timeline for only a certain amount of time so it doen't bother you guys.

just thought i would make a suggestion.

hula_dancer73 (aka Hi Girl)