Life After ECT

Thank you for tuning into the Life After ECT Podcast.

Life After ECT Inc. 501(c)(3) nonprofit organazation focused on improving the quality of life for those injured by ECT.

Learn more about what we do and how you can support our work: Looking to a Brighter Future for Those Harmed by ECT

Show Notes: https://docs.google.com/document/d/1LrUHhroyOX66T7FUQ0iytyfNoCzmqKN91PQ0LfiKeBI/edit?usp=sharing

Correction: The law firm is now Wisner & Baum, not Baum Headlund

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Disenfranchised grief: the unseen pain of those disabled by electroconvulsive therapy In this podcast, I talk about the grief that people disabled by electroconvulsive therapy (ECT) may experience, which often goes unrecognized. I want to clarify that I am not a mental health professional but someone who has gone through this experience, sharing what has helped my ongoing recovery. (see full disclaimer)

Resources mentioned in the episode: https://lifeafterect.com/disenfranchised-grief-the-unseen-pain-of-those-disabled-by-electroconvulsive-therapy-ect/ Support our mission: https://lifeafterect.com/donate/ Sign our patient safety petition: https://www.change.org/p/standardize-regulate-audit-shock-treatments-electroconvulsive-therapy-or-ect

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Linda Andre Testimony - Vermont House Bill H12, Informed consent to electroconvulsive therapy, 1999

Testimony date: 2000

⁠⁠Links to Linda's Work⁠

If you can, please consider supporting Linda's son's GoFund me to cover funeral expenses and preserve her library of research. ⁠⁠Fundraiser by Alandra Markman : Linda Andre's Legacy (gofundme.com)⁠⁠ ( https://www.gofundme.com/f/linda-andre )

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Linda Andre Testimony - Vermont House Bill H12, Informed consent to electroconvulsive therapy, 1999

Testimony date: 2000

⁠Links to Linda's Work

If you can, please consider supporting Linda's son's GoFund me to cover funeral expenses and preserve her library of research. ⁠Fundraiser by Alandra Markman : Linda Andre's Legacy (gofundme.com)⁠ ( https://www.gofundme.com/f/linda-andre )

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An Interview with Linda Andre by Philip Bennet, recorded several years ago (the recording date was not included in the file). In it they discuss her book, Doctors of Deception, What they Don't Want You to Know About Shock Treatment.

Our community has recently suffered a great loss. Linda Andre, author of one of the most important books on ECT ever written, passed away this month. Linda was my hero. I first came across her work while desperately searching the Internet for answers when ECT damaged my brain and my doctors refused to believe me. Reading her presentation "Electroconvulsive Therapy as a Head Injury" changed my life.

Her work showed me that ECT can cause permanent brain damage and those affected by ECT are routinely denied testing and rehabilitation, as was the case with me. Linda showed me the hope of recovery through the stories of people who found a way to recover when doctors couldn't help them.

There is so much I want to say about Linda, but after ECT, the right words are always so hard to find. Until I can write a full tribute post I wanted to do something so I recorded a small tribute to ger along with her second inteview with Philip Bennet. In it they sumarize key points from her book.

Find links and resources and tributes to Linda Andre in the show notes.

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Have you experienced any unexpected problems after undergoing electroconvulsive therapy (ECT)? Have you faced difficulties in convincing your doctor to refer you for testing and rehabilitation? You're not alone. For over 80 years that ECT has been in use, people have reported disabling side effects. Despite decades of ECT's use, no mandatory standards have been established to ensure that individuals can receive comprehensive testing and rehabilitation if necessary. View the ⁠⁠⁠#AuditECT petition⁠⁠⁠. In 2016, there was an opportunity to address this issue when the FDA attempted to reclassify the ECT device. The FDA's proposed guidance included mandatory neuropsychological testing for those undergoing treatment. However, the American Psychiatric Association (APA), a professional organization representing 36,000 psychiatric physicians, opposed the idea of mandated testing. Eventually, when the reclassification was finalized, the original proposed testing mandates were abandoned. There are people who underwent ECT many years ago and have never undergone a neuropsychological evaluation, not to mention the countless people who have recently undergone electroshock therapy. With an estimated 2 million people worldwide undergoing ECT each year, a staggering number of individuals will continue to struggle to access appropriate testing and treatment for disabilities caused by ECT and other health issues related to electrical injury. See show notes for links and resources. --- Send in a voice message: https://podcasters.spotify.com/pod/show/lifeafterect/message

Many harmed by electroconvulsive therapy (ECT) want to protect themselves from forced ECT in the future.

One way to do this is by creating a psychiatric advanced directive (PAD), which is a document that outlines their wishes regarding psychiatric treatment.

Content warnings: In this episode I briefly discuss forced treatment, unmodified ECT, and the limits of advanced directives. Be sure to practice self care if any of these topics are disressing to you.

Learn more about psychiactric advanced directives, forced and unmodified ECT in the show notes.

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There are so many things I wish I had known before having ECT. The following are the focus of this episode: Like how my doctors would treat me after being disabled by the procedure The "new and improved" safety measures aren't as effective as advertised ECT's lasting impact on how the brain processes vision That ECT doctors don't know much about electricity or what it does to the human body Some people will experience serious disabling conditions from the electricity used to cause a seizure citations and resources 5 Things I wish I knew before having ECT (electroconvulsive therapy) --- Send in a voice message: https://podcasters.spotify.com/pod/show/lifeafterect/message

There are so many things I wish I had known before having ECT. The following are the focus of this episode:

• Like how my doctors would treat me after being disabled by the procedure
• The "new and improved" safety measures aren't as effective as advertised
• ECT's lasting impact on how the brain processes vision
• That ECT doctors don't know much about electricity or what it does to the human body
• Some people will experience serious disabling conditions from the electricity used to cause a seizure

citations and resources ⁠5 Things I wish I knew before having ECT (electroconvulsive therapy)

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This is a presentation by Sarah Price Hancock for the Stop Depression Summit, 2023. ⁠https://stopdepressionsummit.com/⁠ 

Show notes and links

https://docs.google.com/document/d/1EWo9lkpuK2lU4roaMYumZ8fJ6ujM4UKc_IBvsOnskfk/edit?usp=sharing

About Sarah

Sarah lived for nearly two decades, misdiagnosed with severe “treatment resistant” mental illness. She was given⁠ ⁠116 bilateral ECT treatments⁠⁠ and now lives with Delayed Electrical Injury’s Myoneural Disorder.

Sarah holds a Master’s in Rehabilitation Counseling and taught for four years in San Diego State University’s Rehabilitation Counseling program. She also hosts The Emotional Self-Reliance Podcast and guest lectures on psychiatric recovery.

She founded a newly formed nonprofit, The ⁠⁠Ionic Injury Foundation⁠⁠, with a focus on electrical injury research. Donate to her fundraiser ⁠https://www.gofundme.com/f/ionic-injury-foundation?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1⁠

Learn how you can participate in⁠ ⁠electrical injury research⁠⁠.

Learn about⁠ ⁠Sarah’s campaign⁠⁠ to ensure those harmed by ECT get the help they need and future ECT patients are protected through standardization and regulation.

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