Has Your Life Changed For The Positive Since Making Friends Here? | MyEpilepsyTeam

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Has Your Life Changed For The Positive Since Making Friends Here?
A MyEpilepsyTeam Member asked a question 💭

Do you remember how you heard about this site? Do you have a local support team (family, friends or other epileptics)? If yes, then how has joining the team here been additional better? What would you suggest to the keepers of the site to improve the experience for new people (based on your experience) to convince them to stay longer and give the site a chance?

posted November 15, 2023
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , I believe I found the site info on Facebook but didn’t click on the link for more information for a while but then I eventually did & am glad I did. I have connected with many wonderful people on here & a few don’t participate on the site anymore but a few of them I connected with outside of site & I think it was Rick who lives a couple hours away, & told me about our local Epilepsy Foundation & suggested that I call them about trying to get disability. I soon learned there’s so much our local Epilepsy Foundation can do to help us. My local Epilepsy Foundation had me call a law firm & they helped me & my disability was approved in 2022. My local Epilepsy Foundation helped me when I didn’t have any insurance & I have participated in their 4 week painting class & last year I went to their “Living With Epilepsy Conference”. I have connected with one team member who lives near me & we get together every now & then. She’s a great friend. I wish there was a better way to sort out who’s new or something. I don’t like that each time a new message is posted that all the other older posts keep getting pushed down further & further & so unless you keep scrolling & scrolling down you might not even see some of those posts. I just wish there was a better way to organize it. I try to share information to new team members about their local Epilepsy Foundation & sometimes share information about The Danny Did Foundation which allows people to apply for a grant to use to get an Epilepsy device that is listed on their website. I know some people on here get frustrated with having their seizures & sometimes I see cuss words in some posts which totally turns me off. I think the rules even note you’re not supposed to do that but I would bet more than half the people who join don’t read the rules. But overall, I enjoy the site & am grateful to have met all of you & for the ones I have connected with outside of the site. Your friend in Texas, Becky

posted November 15, 2023 (edited)
A MyEpilepsyTeam Member

Dear, John and Susie q I went for my SSDI application lat year.2022 and worked my tail off with no help from anyone. except my my wife making sure I made their different meetings. I expected to get SSDI and get my retirement benefits. I had worked for nearly 25 years at different junk jobs. I am now receiving. more than what had on regular SSI because of the epilepsy. YIPPEE ericthom3

posted December 5, 2023
A MyEpilepsyTeam Member

Amy my doc informed me about this site. I love it a lot. I realize how grateful I am even though I cannot do things I used to in my life. 🙏🏽😊

posted November 19, 2023
A MyEpilepsyTeam Member

ABSOLUTELY! I've learned so much from the stories of members here. I'm humbled by the challenges that so many face, have faced in the past, and are bravely working to resolve. I also love the "I've got your back" attitude of members toward one and all. I love being of some help too!

posted November 15, 2023
A MyEpilepsyTeam Member

It’s given me a chance to see how epilepsy is treated worldwide and make friends around the world with epilepsy. I don’t remember(go figure🤪) how I stumbled on this site but however it was much needed. I have learned so many things from others experiences that doctors have never told me about, from a physical, emotional, spiritual and mental perspective. It finally put me in contact with others who help me to see living with epilepsy is NOT easy but can be done with a supportive group of likeminded individuals all striving to live our best lives.

posted November 15, 2023

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