At the end of part 1 of my interview with Sarah, she had become dizzy and managed to get to the floor safely. Once the gravitational pressure on her brainstem was relieved by being horizontal, the change in the clarity of her voice was astounding. 

I caught up with Sarah a few weeks later to pick up where we had left off, and in part 2 we talk about Sarah’s experiences living with ‘ECT brain’ -- like learning how to read and comprehend again. 

Sarah shares some of the treatments she’s tried to varying degrees of success; and how she managed to achieve her Master’s degree in rehab counselling in spite - and because of - her medical care experiences. 

Sarah also talks about her experiences of bilateral hemiplegia - a frightening condition where one side of the body becomes very weak or paralyzed - for Sarah it is always the right side, and she will have great difficulty walking, talking and breathing.

Sarah tells about some of these weird stroke-like responses her body has to things in our environment like mold, barometric pressure changes, or foods with residual alcohol. 

Sarah also shares about some of the treatments that have had a positive effect on her symptoms, and by extension, her quality of life. She tells about MacGyvering a grounding bracelet that has helped dampen some symptoms, and about the time the cold laser therapy on her brainstem brought instant symptom relief. Sarah also tells about the ‘weird science’ interaction during acupuncture when all of her neurological symptoms disappeared -- until she put her cell phone up to her head.

It is truly frightening that shock treatment, aka electro convulsive therapy, or ECT, is not standardized. It is like the wild west with different doctors using different protocols and - surprise, surprise - getting different results. Sometimes good, sometimes devastating like in Sarah’s case. That is why Sarah has started an international petition to make ECT safer.

One final note, when I started recording the interview, Sarah had just gone from being sitting up and being vertical to laying down and being horizontal --- listen to how Sarah’s voice becomes more clear as we get further into our chat. 

SHOW NOTES 

0:07:00 (At the end of part 1, Sarah had gotten dizzy and had to lay down on the floor. We connected again a few weeks later.) It takes a while for Sarah's body to normalize from dizziness, so the longer she stays horizontal, the more likely she'll be able to sit or stand later 0:08:00 Not sure what's going on with Sarah's body, but the research into electrical injury, the focal point of the electricity is on the brainstem - but the brainstem is not involved in emotional regulation that they are trying to effect in shock treatment (ECT) - the electrodes are placed on the temples 0:09:00 And the electrical currents pass through the brain to the anterior of the frontal lobes and brainstem area - they've discovered the most damage is along the current's course through the brain - it also causes diffuse electrical injury in the brain - so the more shock treatments, the more damage they are likely to have 0:10:00 Electrical injury in other parts of the body also impacts the brainstem - we have to remember our central nervous system was designed to conduct electricity, so whenever we're exposed to an electrical current, it is going to travel the path of our nervous system, it is not contained to a specific body part 0:11:00 Sarah is sensitive to electrical currents in the environment, from devices - she had a unique experience, she began working with a doctor who uses acupuncture - sometimes in acupuncture they will create a circuit within your body from one needle to another - when he did this to Sarah, her symptoms completely subsided 0:12:00 The constant static humming she's feels in her body, completely went away - the doctor said he'd never seen that before - Sarah's speech problems completely resolved - then her phone rang, as it got closer to her, Sarah's symptoms started to reappear - when she finished the convo and moved the phone away from her, the symptoms resolved again - the doctor's eyes almost popped out of his head 0:13:00 There is so much we don't understand about the body and its response to electrical currents - Sarah does a lot of 'grounding' - it helps her sleep and takes away the static feeling - this should all be looked into if someone has an electrical injury 0:14:00 Grounding is where the person is literally grounded to the earth - a study in cardiac patients that were grounded for 8 hours a day (during sleep) - an electrical wire is grounded to the earth 0:15:00 The Natvie Americans use grounding a lot - Sarah knows a story of a man visiting his grandmother on a Reservation and she demanded he take his shoes off because 'they are going to kill you' - she recognized there is rejuvenation by being connected to the earth - the cardiac patient and grounding study measured their cortisol every 4 hours 0:16:00 Over several weeks, the patients re-regulated their cortisol and improved their sleep patterns and improved their heart problems - that was a controlled research trial - Sarah is very research based and thought 'it couldn't hurt' to try - going barefoot in the grass or using actual grounding equipment 0:17:00 Sarah has felt a difference: improved sleep, improvement in her most annoying symptoms 0:18:00 A woman selling an EMF detector device applied it to Sarah, but it didn't light up, something the woman had not seen before - she didn't know that Sarah was sitting on a grounding mat - Sarah finds it fascinating that we can improve our health many different ways 0:19:00 Sarah also bought a grounding bracelet (from Amazon, like $3), the kind you'd use for fixing computers - the bracelet has a wire that is connected to an alligator clip - Sarah bought a power surger that has a light that indicates when it is grounded 0:20:00 Sarah warns to consult with someone who knows electrical engineering, not to take her experience as advice because electricity is powerful and don't want to cause problems 0:21:00 Sarah put a grounding screw into the 3rd hole of an electrical outlet and attached the alligator clip to that screw - Sarah then sleeps with the grounding bracelet on - that's the cheap way, you can pay hundreds by purchasing equipment online 0:22:00 Barometric pressure is what changes our weather - a 'low' is when a storm is coming in, the faster it drops, the faster the storm is approaching 0:24:00 When there is the barometric pressure drops, Sarah gets the most intense tension pressure headaches - Sarah has problems going into the mountains because her body has problems regulating pressure, and the motion is also a problem 0:25:00 Sudden storms can cause bilateral hemiplegia - there is a lot to be researched about the body - Sarah sent research on electrical injury to a NIH researcher, he got her on serine and ATP 0:26:00 Patients with delayed onset have low levels of serine, and amino acids - when the NIH researcher read Sarah's list of research, he started to understand why Sarah was not improving 0:27:00 Brain stem and cranial nerve damage is not something he knows how to address - Sarah has been blessed to connect with some exceptional researchers - Phillip Yarnell, Ken Ferguson - specialize in electrical injury - they want Sarah to have a 3T MRI with various sequencing 0:28:00 To identify how her brain is functioning - Sarah was also referred for an EMG and 'sees' inside the brain, not just the surface - the challenge with electrical injury is that they can cause bizarre symptoms, that are broad and varied, so doctors look at the symptoms as conversion disorder because they don't understand - when researches look at brainstem evoking potential, they can cause all these symptoms 0:29:00 This indicates its not a conversion disorder, but a type of seizure - and its not captured on a standard EEG - but during a brainstem evoking potential procedure they overstimulate the patient visually, auditorally and they show damage in the cranial nerves and brainstem causing dramatic problems - so its critical that people with an electrical injury understand that the laws of electricity do not change based on benevolent intent 0:30:00 So just because a doctor gave you electricity, doesn't mean it contravenes the laws of electricity and human tissue - Sarah and her doctor are looking into cranio cervical instability (CCI) because electrical injury causes atrophy to tendons and muscles - some patients develop bulbar type symptoms with difficulty swallowing 0:31:00 When Sarah lays down her thoughts are much clearer, so she's going to get imaging for CCI - when Sarah is horizontal the effect is so profound - animal studies show electrical injury causes compression of the brainstem - the electrical force to cause seizures is about the equivalent of 73 pounds pushing on the brain 0:32:00 The electrical pulses strain the brain - science is compartmentalized and not considering how electricity affects different parts of the body - (Scott mentions the PoNS device) 0:33:00 Sarah tried cold laser therapy and it radically improved things - but it also stimulated her nervous system, and the more she used the laser, after initial improvement, the worse she got - so how much stimulation can the brain get before it short circuits? - new devices stimulate nerves, but the truth is we don't know how they work 0:34:00 So how long with they work? How much time is needed for a treatment? We're getting into areas we don't understand, especially about delayed electrical injury - research looks for immediate results, and not recognizing delayed electrical injury that is well documented in the literature 0:35:00 It is devastating to many people because it is directly related to motor neuron disease, and motor neuron disease is devastating - (Scott refers The Healing Brain by Dr Norman Doidge, and to Dr Fred Khan, about laser therapy) 0:36:00 Sarah knows they use laser therapy in brain and spinal cord injury 0:37:00 Sarah has seen dramatic results but wants to caution people that we don't know enough about delayed electrical injury - for Sarah, who has repetitive electrical injury, her results are probably more dramatic, but less long term - recently she ate something with residual alcohol in it, but her body can't process alcohol 0:38:00 Within 10 minutes of trying it, she couldn't speak or walk - dizzy, difficulty communicating, breathing - her brother immediately took Sarah for cold laser therapy 0:39:00 The doctor put the laser on her brain stem and instantly her symptoms resolved - but Sarah says use caution, too much of a good thing is not a good thing - just because it works now, doesn't mean it will work, or not cause problems 5 years from now - study and do research 0:41:00 There are many medical practices and cultures we can learn from, but we need to keep tings in context 0:42:00 Sarah quit shock treatments against medical advice in June 2009 - in 2010 Sarah had immediate onset of hemiplegia and frenetic nerve spasms that look like dry heaving, but there is no nausea - then it becomes diaphramatic paralysis - so less then a year after stopping shock treatments - then in 2013 it happened again 0:43:00 The 1st time it happened she was at the dentist and was taken by ambulance to the hospital and tested for stroke - her CT was clean, and within 36 hours she had regained the strength in both sides of her body 0:44:00 It happened again with a doctor, the room had a lot of stimulation - Sarah got very dizzy, and the world turned topsy turvy and Sarah slanted to her right - again she was taken by ambulance to another hospital for stroke assessment - they said she had atypical migraines 0:45:00 So no damage on CT scans after those 2 events, but they started to happen more frequently - in 2007 Sarah was exposed to mold - she was working in a building with a history of a leaky roof and being flooded - within 18 months Sarah was messed up, could not walk, etc 0:46:00 She didn't know at first it was mold related - but started practicing mold avoidance and her symptoms started improving - so what makes Sarah sick is not one single thing, it is a cumulative issue - she believes there are toxicity issues from her underlying condition of hepatic encephalopathy - this was complicated when they gave her psychiatric medications that her body could not metabolizing - so her brain was marinating in ammonia 0:47:00 They tried to fix that by using electricity, repeatedly - Dr Bennett Amolio spoke at a board meeting for the State of California's Department of Rehabilitation - he was talking about brain injury and stated that electrical injury is a functional injury, and repetitive electrical injury is like repetitive head injury with similar effects as functional injuries, motor neuron injuries, and Parkinson type movements in football players 0:48:00 He said the injuries are not seen on typical scans, very fine scans must be used - on the cutting edge of quantifying the problems - Sarah's side effects from shock treatment are typical for shock treatment patients - there is no standardization of shock treatment - there are 7 variables involved 0:49:00 There is an outcome dichotomy of shock treatment: people either say it saved their lives, and others say it ruined their lives, including death as a direct result - Sarah says we really need to make change - need fidelity and standard operating procedures so doctors can replicate what the research shows - with ECT they never replicate electrode placement and seizure threshold and all these things you'd think would be standardized 0:50:00 So doctors give information in the informed consent, but the doctor may not be using the same protocol - when the manufacturer lists 7 variables that may cause permanent brain damage or memory loss, that is a red flag to prioritize patient safety and minimize patient risk - that is why Sarah created the petition for standardization 0:51:00 Sarah says when people hear these amazing stories about ECT and recovery, but because it is not regulated or standardized, we have to remember these stories, good and bad, are just anecdotes until research is done 0:52:00 Sarah has a podcast - and now that she knows how much better her voice is when she's horizontal, she should get back into her podcast - Sarah worked really hard to get supports and academic accommodation in place and 1.5 years after shock treatment, she was accepted into an internationally recognized rehabilitation program - they looked at her lived experience and her grades in undergrad 0:53:00 They put more weight on lived experience then GRE (Graduate school test) testing because Sarah tested in the bottom third, a vast difference from her 3.9 GPA in undergrad 0:54:00 Dr Karen Sacks admitted Sarah to the program, could see her potential for success - Sarah feels blessed to have been accepted into the San Diego university - the students used Sarah a lot for their research to know what kind of assistive technology Sarah needed - she could then take that report to the accommodation office at the university - Sarah learned about neuroplasticity and what she could do to help her brain 0:55:00 She essentially had to learn to read/comprehend again because ECT made it that Sarah could not remember the line she just read, or identify what line to read next - she had to listen to audio why the words were highlighted on a screen so she could learn to track her reading - there was a lot of rehab involved that most electrical injury patients don't have access to - so Sarah is creating rehab protocols for these patients so they can get access to life enhancing treatment and protocols - Sarah can read and retain info now, her working memory has improved 0:56:00 Sarah got her Masters degree and was working as a research assistant and graduate assistant, and they were so impressed with her work they invited her back to teach even though she didn't have a doctorate - so Sarah co-taught and co-authored psych rehab accredited curriculum - a phenomenal experience teaching for 4 years 0:57:00 They created recovery based practical solutions for psychiatric rehab - California implemented Professional Clinical Licensing, so they were able to create a clinical track for rehab counsellors - but with the delayed onset of electrical injury, Sarah was forced into early retirement 0:58:00 It was hard because she loved teaching and designing lessons - she loved being able to challenge the notion that psychosis was permanent, but that people could recover and return to work, if they have the supports, they can have a full life - but there is so much bias against people with brain injuries and psychiatric problems 0:59:00 There is an assumption that patients can't recovery, but in reality you can't judge a fish by how well it climbs a tree - if you give appropriate assessment and supports, and if you believe in your clients and help them believe in themselves, will take their life in directions that will be astounding - Sarah thinks helping people recognize their own potential 1:00:00 By bringing together knowledge, we can produce great programs that improve quality of life and reduce harm - When Sarah sits up, her speech is so affected she has had to start using speech to speech relay services - she was just assessed for text to speech therapy 1:01:00 Sarah ability to stand is deteriorating, as is her ability to sit up - but Sarah had strong relationships with universities and is frequently asked to present - now she either has to do it from being horizontal, or horizontal from home via zoom video, or like Stephen Hawking, with an electronic voice - the university said that Sarah's presentations are so profound for the students they didn't care how she did it 1:02:00 It means a lot to Sarah that people are recognizing lived experience as very valuable - if doctors integrated what they know with what patients know, they would create great care - there some doctors out there who do this and integrate patient experience to understand practical application 1:03:00 Sarah's website is PsychRecoveryandRehab.com, Sarah's podcast is on emotional self-reliance - there are 10 episodes and walks through the basics of creating emotional self-reliance, autonomy and independence 1:04:00 It is good for anyone who has been slammed again and again - helps people take back power over their lives - her podcast is called Emotional Self Reliance 1:05:00 Sarah says her international petition to get ECT regulated needs more signatures - if any one is interested in helping translate it to their own language, they can connect with Sarah

 

CONNECT WITH SARAH PRICE HANCOCK:

Twitter: @PsychRehab

Facebook: Psych Recovery and Rehab

Linkedin

Website:http://www.psychrecoveryandrehab.com/

Podcast:https://www.psychrecoveryandrehab.com/esrpodcast/

Youtube:https://www.youtube.com/channel/UCMRPmYh9SrE3RcdmFObhyYw?view_as=subscriber

Sarah's petition for ECT regulation and standardization: http://chng.it/rBGJNSKB5m 

__________________________________________________________

Be a podcast patron

Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions. 

Premium Patrons get access to video versions of podcasts for $5 / month.

Be my Guest

I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.

If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com 

Need a Counsellor?

Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.

If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.

**For my health and life balance, I limit my number of counseling clients.** 

Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com

Scott Simpson: 

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.

Remedies Counseling - Making Life Better

Have you had traumatic experiences with the health care system?

Are you living / struggling with a chronic illness? 

Do you need a counsellor with proven expertise and experience to make life better?

Book an appointment with Scott online at RemediesCounseling.com

RemediesOnlineCounseling@gmail.com