What’s Shakin’?! Podcast

Dating: every epileptic’s worst nightmare. How do I tell them? How will they react?

We asked for your dating questions. We came up with our best answers. As always, Bree and Grace have not had the same experiences as others.

TW: Rape and Abuse

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Music: “Jump In Line (Shake, Senora)” by Harry Belafonte. RCA Records 1961. We do not own the rights to the music.

Per Copyright Disclaimer under section 107 of the Copyright Act of 1976, allowance is made for “fair use” for purposes such as research, reporting, commentary, criticism, and education. The use of material is not repurposed or meant for profit.

We’ve heard of people coding during a seizure, having to leave the military, and getting kicked out of school due to their epilepsy. Meet Stuart: the man who has dealt with it all. He was kicked out of the military for being epileptic. He was kicked out of college for being epileptic. He is in the New England Journal of Medicine for being the first person to code during a seizure while being monitored.

*Language warning!*

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Get your tissues ready! Bree and Grace talk to members of The Danny Did Foundation. The foundation raises SUDEP (Sudden Unexpected Death in Epilepsy) awareness in honor of four-year-old Danny Stanton, who passed away from a seizure. We discuss Danny’s story, what SUDEP is, and how to get involved and/or help. As hard as it can be to talk about, SUDEP needs to be talked about.

Link to The Danny Did Foundation: https://www.dannydid.org/about-us/

The SUDEP Institute: https://www.epilepsy.com/about-us/our-programs/about-sudep-institute

The Danny Did Foundation on Instagram: @danny_did_foundation_ and Twitter: @DannyDidOrg

People Against Mortality in Epilepsy (PAME): https://www.pameonline.org

SUDEP fast facts: 1 in 1,000 people with epilepsy die from SUDEP every year, people with uncontrolled, convulsive, and nocturnal seizures are at the highest risk, it is most common in young adults, and seizure control is the biggest defense against SUDEP.

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Bree and Grace bring back Angelina (@amperrino) for spooky season. We go through 4,000 years of eerie epilepsy info. We touch on creepy myths, ideas, and how epilepsy was treated in the past. *If you’re queasy, this may not be the episode for you.

Follow us on Instagram: @whatsshakinpodcast and Twitter: @whatsshakinpod

*Warning: There is strong language throughout the episode. Surprise! It wasn’t Bree.

Music: “Jump In Line (Shake, Senora)” by Harry Belafonte, 1961. RCA Records. we do not own the rights to the music.

This weekend was World Mental Health Day, so Bree and Grace tackle one of epilepsy’s biggest comorbidities: mental health. Depression and anxiety are the most common with epilepsy, and something we both have dealt with on multiple occasions. We give our advice for living with epilepsy and having mental health struggles; trust us, you are not alone.  As always, talk to your doctor if you feel any changes in your mood or health.

Suicide Prevention hotline(s):

USA: 800-273-8255

UK: 116 123

Canada: 833-456-4566

Bree and Grace talk with Téa about having epilepsy and PNES (psychogenic nonepileptic seizures). She discusses what PNES is, how the seizures differ from epileptic seizures, and her experiences having both PNES and epileptic seizures. Listen for some tips for those newly diagnosed with PNES and how to learn more!

Grace and Bree chat with Brooke (@squeezerrrrrr), a 9-1-1 dispatcher in Maryland. She discusses information that is helpful for dispatchers, what questions one can expect, and how to best handle medical emergencies. She breaks down how paramedics and police are dispatched, the importance of making sure you answer all questions, and how you can help someone having a seizure or other medical emergency.

Music: “Jump In Line (Shake, Senora)”, by Harry Belafonte, 1961. RCA Label. We do not own the rights to the music.

Grace and Bree discuss one of your suggestions: catamenial (hormone-triggered) epilepsy. Aunt Flo brings all sorts of goodies with her, and if you’re epileptic, seizures can be one of them! We discuss our experiences, how it can be diagnosed, and different treatment options to talk about with your doctor. Sorry guys, this one is gender-specific, but you’re still welcome to listen!

Music: “Jump In Line (Shake, Senora)” by Harry Belafonte, 1961. RCA Records. We do not own the rights to the music.

We chat with Miles (@milesdlevin), who wrote and directed the short film, “Under the Lights” (@underthelightsfilm), about a boy who risks having seizures in order to feel normal and attend prom. Miles is also living with epilepsy. He talks about the concept behind the film, seizure misconceptions in film, and how the epilepsy community can come together to get rid of stigmas!

Music: “Jump In Line (Shake, Senora)” by Harry Belafonte, 1961, RCA Records. We do not own the rights to the music.

We chat with 15-year-old Hailey, whose twin sister, Livy, has cerebral palsy and was diagnosed with epilepsy after having her first seizures just a few hours after birth. Hailey is the CEO of the Epilepsy Foundation Kid’s Crew, a program aimed to help kids learn about epilepsy and advocacy. Along with her family, she started the charity Livy’s Hope (@livyshope). Livy’s Hope has worked with the Epilepsy Foundation of America to start Lemonade for Livy to raise funds for epilepsy research. Not only has she accomplished all of this, but she is Marvel Hero Project’s newest super hero!

Music: “Jump In Line (Shake, Senora)” by Harry Belafonte, 1961, RCA Label. We do not own the rights to the music.