‘My Brain Is On Fire!’- Season 2

SHOW NOTES

Here’s how it starts. An innocuous flu. A malaise. Within weeks paranoia, hallucinations and sleepless nights. Sometimes hyper sexuality and rage. Next writhing movement and grunts. Anger and torment replaced by vacant stares and silence. Relentless seizures, catatonia and coma. Come to the Salem witch trials, modern day exorcisms, and uncover two cases of murder. We will delve into the science, diagnosis and modern treatment of Anti-NMDA Receptor Encephalitis. Join our survivors, experts and loved ones. Dropping Late September 2019

***If you currently going through this illness, we STRONGLY recommend listening in REVERSE order. The first 3 episodes have sound effects and content that may be triggering***


Episode 1: The Groton Witch

Release Date TBA

Show Notes

Host: Laura

Guests: Nesrin; Director of the anti-NMDA Foundation, Dr. Christopher Uy; Neurologist & Partner physician with the Anti-NMDA Foundation, survivors and caregivers, Linda, Ruth, Deanna and Kim

Had the devil taken hold of Elizabeth Knapp? Elizabeth writhed and screamed. She lunged at Rev.Willard in a blasphemous rage. She went silent and had long catatonic periods. Her diagnosis? She was possessed. In the late 1600’s it didn't take much to cast out as a witch. But what if the reality was a rare auto immune disease? Join us and find out more. 

***This episode has potentially triggering content including screaming sounds, descriptions of symptoms and raw emotional content***

Citations:

https://www.madinamerica.com/2016/08/not-so-rare-but-rarely-diagnosed-from-demonic-possession-to-anti-nmda-receptor-encephalitis

http://revisionisthistory.com

https://history.hanover.edu/texts/Willard-Knap.html

http://www.bbc.com/future/story/20181221-can-an-auto-immune-illness-explain-the-salem-witch-trials

https://en.wikipedia.org/wiki/Salem_witch_trials

The Salem Witch Trials: a Day by Day Chronicle of a Community Under Siege

https://www.history.com/news/7-bizarre-witch-trial-tests

Tags: Puritan, ANTI NMDA, encephalitis, Salem, Witches, Possession, 1600’s,Neurology, survivors, Hope, survival, Brain on Fire, ELizabeth Knapp, Witch Trials,Demon,


Episode 2: 68 Pounds

Release Date: TBA

Show Notes

Host: Laura

Guests: Nesrin-Director of the anti-NMDA Foundation, Dr. Christopher Uy- Partner physician with the anti-NMDA Foundation, Elena Blanco-Suarez neuroscientist, Gwen Lamont-My Mom, Social worker and Writer, Survivors and caregivers Deanna, Linda, Ruth and Kim.

She was only 68 pounds on the day of her death, the size of an average 10 year old. But Analise did not die from her frontal lobe epilepsy. She died of starvation and endured over 67 exorcism rites at the end of her life. So what accounts for modern day exorcisms like these? How does illness perception, religion and science work with and against each other? 

***This episode has potentially triggering content including descriptions of murder, exorcisms and raw emotional content***

Citations:

https://www.grunge.com/123654/horrifying-truth-exorcisms

https://en.wikipedia.org/wiki/Anneliese_Michel

https://www.theguardian.com/commentisfree/2018/mar/06/exorcists-catholic-evangelical-church-child-abuse-new-inquisition

https://www.psychologytoday.com/ca/blog/brain-chemistry/201808/the-power-neuroscience-compels-you

Africa’s Witch Children: Extreme Christianity Documentary

https://www.madinamerica.com/2016/08/not-so-rare-but-rarely-diagnosed-from-demonic-possession-to-anti-nmda-receptor-encephalitis/

https://www.bbc.co.uk/news/resources/idt-sh/nigeria_children_witchcraft

www.antinmdafoundation.org

https://globalnews.ca/news/5848190/harry-potter-banned-catholic-school-library-spells

Tags: CHRISTIANITY, exorcisms, Catholic Church,demons, exorcisms, murder, starvations, Modern day, principalities of Darkness, ANTI NMDA, SURVIVORS, Neuroscience, Seizures, EPILEPSY, witch children of Africa, annalise michel, Vilma Trujillo, jacobs well, family, priests, catholic


Episode 3: In The Kaleidoscope

Release Date: TBA

Show Notes

Host: Laura

Guests: Dr. Christopher Uy- Partner physician with the Anti-NMDA Foundation and Neurologist, survivors and caregivers, Ruth, Kim, Linda, Deanna & Danika

As the flu like symptoms of the first weeks fade, paranoia, fear and aggression take their place. Trapped in another world, our survivors end up under psychiatric care still lacking a positive neurological diagnosis . An unfortunate inevitability for encephalitis patients. Hope can feel like it’s slipping away when lurking underneath is a neurological disorder systematically attacking your brain. Join us in the psych ward with our survivors and caregivers.

***This episode has potentially triggering content including descriptions psychiatric care and raw emotional content***

Citations

Brain On Fire: My Month of Madness by Suzanna Cahalan

Tags: Psych ward, encephalitis,ANTI NMDA, locked unit, locked unit, hallucinations, delusions of Reference, Alice in Wonderland syndrome, Delusional Parasitosis, Jamais VU, restraints, short term memory loss, panic, anxiety.


Episode 4: The Doctor Is In: An interview with Neurologist Dr. Christoper Uy

Release Date: TBA

Host: Laura

Guests: Dr. Christoper Uy

This episode is pure Dr. Uy. Listen as Dr. Uy follows the arch of NMDA Receptor Encephalitis from on-set to diagnosis, treatment all while using up to date research. Use this episode as a learning tool or to share with your treating care team. If you are a curious bird like me, hearing Dr. Uy describe this disease is fascinating, and his mellifluous voice will have you listening to every. last. word. Full transcript available below.

Full transcript available here

***No content warning. Just pure amazing***

Tags; ANTI NMDA receptor encephalitis, modern research, Education,medicine, lobes, seizures, interventions, IVIG, Rituximab, surem, Lumbar puncture, healing, ICU, Physician.


Episode 5: Mama Bears

Release Date: TBA

Host: Laura

Guests: Caregivers and Advocates with the Anti NMDA foundation, Nesrin, Deanna and Linda

Three mothers. Two of them wonder if the disease will strike again and one wonders if it will ever loosen its grip. For some caregivers trauma and stress can be a new normal.  Loss of income, friends and on-going grief are common. But these three women also have a new crusade and purpose. There is an inherent changing of the guard from parent to fierce advocate. Nesrin, Lynda and Deanna are all family caregiver advocates for the antiNMDA foundation and are tireless in their support of families. They all opened their world to us for this series. Be in the presence of their awesome strength and vulnerability.

***This episode has potentially triggering emotional content about acute and chronic illness and swearing.***

Citations

https://www.cbc.ca/cbcdocspov/features/caring-for-the-caregiver-how-to-prevent-burnout

https://www.helpguide.org/articles/stress/caregiver-stress-and-burnout.htm

https://counsellingbc.com

https://www.healthlinkbc.ca/mental-health

Self Care Tips

Tags:walking on egg shells, new normal, CATALYST, education, advocacy, pain, healing, fight the system,loss, tragedy, triumph,Faith,ANTI NMDA


Episode 6: Isn’t She Lovely

Release Date: TBA

Host: Laura

Guests: Our survivors Danika, Kim and Ruth

Encephalitis can steal you away for a weeks, months, years and sometimes even longer. For those in recovery the question remains who am I now? Like any brain injury, it can alter perspective, change relationships, affect your memory. It can derail your life course and change who you are. Our survivors Ruth, Danika and Kim unveil the rarely explored life after Anti-NMDA Receptor Encephalitis. This is a must listen as a caregiver or survivor!

***Emotional content ***

Citations

Kim’s Go Fund Me

Tags: Legends, survivors, kick ass women, healing, pain, trauma, lost, questioning,life after auto immune encephalitis,life course, education, mental health,WEllness, gentle, Feminists, tough, connection.