Sarah Price Hancock is a certified rehabilitation counselor and has an advanced certificate in Psychiatric rehabilitation.
It is hard to know where to start in describing what Sarah shares in part 3 of our interview. Sarah imparts so much info about things that helped her regain health - and may help you, and things that hurt her health- and may hurt you. Sarah tells how a correct diagnosis and stopping inappropriate psych meds, resulted in losing 100+ pounds and get back to her high school weight. She tells about how when she started to treat her liver, even though her liver tests were ‘normal’, her health and quality of life improved. Perhaps most importantly, Sarah tells about finding a doctor who approaches psychiatric issues as an autoimmune and toxicity problem, and addresses it with appropriate nutrient support.  This is what stopped the voices in her head that were telling her to kill herself 24/7.  Sarah also tells how when she got a kidney infection and needed antibiotics, the psychosis and voices in her head returned. What did the psychiatrist want to do? Give her psych meds of course. Every symptom looks like a nail if your only approach is to use the hammer of psych meds. Sarah says we need to encourage psychiatry to get back to their roots of orthomolecular approach - trauma cannot be treated with ECT or psych meds - research shows trauma causes physiological changes to the gut biome - and there are more neurotransmitters in the gut then in the brain. And that is why Sarah has started an international petition to create standards for ECT to make patients safer….and not experience the devastating side effects Sarah endures. SHOW NOTES:   0:06:00 One of the pictures Sarah sent, she was much larger - her underlying illness of hepatic encephalopathy, and treatment caused metabolic syndrome from 5 classes of pyschiatric meds - at her her heaviest, Sarah weighed 250 pounds - once she got off those medications and starting eating micronutrition she lost some weight - when she was finally diagnosed with helpatic encephalopathy and the correctly addressed her fungal infection, she has steadily lost weight - she has dropped more than 100 pounds - she's now at 135 pounds, same she weighed in high school 0:07:00 They didn't realize she had fungal edema and what she was eating was also putting stress on her liver, even though liver tests showed normal, when she started treating her liver, her health vastly improved - but Sarah had been living with overgrowth of candidiasis from over prescribed antibiotics - so antifungal meds and herbal protocal helped 0:08:00 Her doctor's website is CandidaMD.com - he describes how over prescribed antibiotics can cause fatigue, auto immune, and other issues - and approaches psychiatric issues as an autoimmune problem, from an orthomolecular view, looking at toxicity issues and a variety of things 0:09:00 Sarah started see this doctor in January 2017 - and started his diet outlined in his book "An Extraordinary Power to Heal" by Bruce Semon - Sarah was on all 5 steps of the protocol at once - it is usually an elimination approach, but since Sarah was so sick, her doctor recommend she do all 5 steps at once - but Sarah had a kidney infection and was on 3 rounds of antibiotics and even though she'd been without psychosis for 5 years, by the 2nd dose of antibiotics she was in full blown psychosis - her psychiatrist wanted to put Sarah back on psych meds, but Sarah pointed out the psychosis manifested with the antibiotics 0:10:00 Sarah then met the candida doctor, Dr Semon, and he said it was candiadis and she laughed at the idea it was causing her problems - she didn't know there were 20 illnesses that could cause her symptoms - Sarah thought it was all a dopamine issue, so her eyes were really opened - Sarah has seen this doctor turn people's health around - Sarah was catatonic from the antibiotics for the kidney infection, and Dr Semon immediately recognized and gave Sarah to big pushes of IV glutathione 0:11:00 Sarah went from asking the nurse to give Sarah her brain back, she thought the nurse had put it in a jar on the shelf and that was why Sarah couldn't move her arms and her body - an hour later after the IV glutathiones, Sarah was ready to go to work 0:12:00 Previously, Sarah had gnarly responses to some medications, she'd have akathesia where she couldn't stop pacing and felt like fire ants coursing through her brains, and extreme agitation and behavior like screaming at her colleagues - but an IV of ALA (alpha lipoic acid) would calm Sarah's body quickly and relieve her of psychiatric issues 0:13:00 Compared to how her body slowly responded to pysch meds, an orthomolecular approach was so much quicker - whereas they use ECT when people are depressed, catatonic, agitated, etc because it is a 'rapid response' treatment, Dr Semon says give them an IV of glutathione or ALA (depending on symptoms) - so its faster than ECT without the brain damage 0:14:00 We need to encourage psychiatry to get back to their roots of orthomolecular approach - trauma cannot be treated with ECT or psych meds - research shows trauma causes physiological changes to the gut biome - the are more neurotranmitters in the gut then in the brain 0:15:00 The myriad of problems associated with dietary, hormonal, toxicity, trauma can be addressed orthomolecularly - Sarah says she cannot take ALA orally as it causes gnarly symptoms - but it is a precursor for glutathione - when Sarah takes ALA via IV, it has a nice calming effect 0:16:00 Sarah has seen patiens come in with mixed mania, so all the symtpoms of depression and mania, agitation, impulsivity, irritation etc and hook them up to IV of ALA, and they would calm down - its important to eat before ALA IV for blood sugar reasons - she would watch their brain calm and rest 0:17:00 A lot of doctors don't know what they don't know, and they are focused on one paradigm and everything they look at looks like a nail because they have a hammer - in reality, sustainable healing uses an entire wellness toolbox to create personal medicine - recognizing what helps and gathering those activities can mitigate suffering 0:18:00 Sarah does recognize the need for medications - she had psychiatric symptoms, and psych meds made her worse, but she did need anti fungal meds to relieve her psych symptoms - there are so many ways we can get sick - they had a client with a son with ADD, ADHD, behavioral problems 0:19:00 The son's bedroom was beside the bathroom, and when they opened up the wall, it was full of black mold - the entire family had been impacted, the father was being treated for 'treatment resistance' depression and had ECT for it - but it was mold mycotoxins in their home - the son was in his 20s, and they don't know how long he'd been exposed to black mold - the family had to move for their health 0:20:00 There are so many things we don't know about - mold is insidious - people with mold exposure don't realize they have to start from scratch, they can't bring clothing etc to a new home 0:21:00 Mold only needs warmth and moisture to grow, so you can't bring mold spores to a new home without eventually having problems again - Orthomolecular Medicine (OM) looks at micronutrition, phospholipids, minerals, vitamins, tissue and cell structure and addresses those insufficiencies and aims for balance 0:22:00 An interesting book by Dr Carl Pfieffer at Princeton's Brain and Bio Clinic - its a 100 page book and he outlines 27 different causes of psychosis /schizophrenia symptoms, and only 1 of those can be addressed with anti-psychotic meds 0:23:00 We need to address the underlying cause of their symptoms - how symptoms manifest is dependent on individual genetics - for 1 person is toxicity may manifest ADHD or arthritis - it depends on the person's unique vulnerabilities - but if you can address the underlying cause, sustainable healing can be achieved 0:24:00 Sarah cycled through 37 different combinations of pysch meds before they found a combo that 'worked' - even then she was still hearing voices, seeing things, mood problems, just not as extreme as previously - whereas with addressing the underlying issue will be life enhancing as the symptoms will go away and there is real recovery, if you're not damaged by other treatments 0:25:00 In Westen medicine they don't recognize the up or down regulation by the meds, so when the meds are removed, the 'brace' is removed 0:26:00 You wouldn't wear a brace or a cast for longer than you needed to - when the meds are removed or changed over night, they expect the patient's nervous system to immediately re-regulate 0:27:00 Patients may think their symptoms are returning, but what's really happening is the removal of meds has a paradoxical effect - there is little research of the longitudinal effects of antidepressants or antipsychotics - so removal of meds causes withdrawal syndrome 0:28:00 Sarah worked with Dr John Humiston (CandidaMD.com) noticed with her candida overgrowth, that if they supported her body with nutrients, she could negate the withdrawal symptoms - it makes sense if you think of the CNS as being damaged, but then giving it proper support to function and heal 0:29:00 Sarah witnessed a lot of people going through treatment - it is called neuro-recover infusion of NAD with amino acids - there are 5 different formulations of neuro-recover - the QEEG scans of before and after neuro-recover were dramatic 0:30:00 The withdrawal symptoms people experienced were reduced by 60 - 70% --- Sarah had been in protracted withdrawal sydrome for 2 years before she tried neuro-recover, and immediately it turned off her akathesia, and within days she started sleeping again, instead of 30 minutes at a time - she was able to sleep for 4 hours, and as treatment progressed, Sarah got 8 - 9 hours of sleep at night 0:31:00 When the body gets the nutrition is needs, it can re-find its homeostasis - Scott mentions his interview with Daryl Brown about 'post SSRI sexual dysfunction' (PSSD) 0:32:00 Sarah says she also experienced PSSD but the neuro recover infusion formulation solved that - and Sarah began experiencing a sex life she never knew was possible 0:33:00 Sarah symtpoms are spiralling down - she recently lost windows of good health when sitting up - it looks like she's going to be living a life in a reclined position, which doesn't leave her with many options to get out and enjoy life - it limits what she can do with her family, what she can do in life - but she's tapped into the disability community for support - at this point, people with electrical injury do not have rehab resources 0:34:00 Sarah is working to change that, and is hoping to do it before she's unable to - (Sarah's petition for ECT regulation and standardization) - Sarah is looking into CCI, but there are not sure what to do about the brainstem injuries 0:35:00 Sarah says brainstem auditory evoked potential testing is important for electrical injury - they overstimulate auditorily and see how your brain responds - also show you moving patterns and see how your brain responds 0:36:00 VNG (videonystagmography) testing - cameras measure how pupils react to light, movement, tracking - they can detect brain stem and central nervous system (CNS) issues 0:37:00 When Sarah had problems with one side of her face, her eyelid drooping - she asks 'was that a myloclonic seizure? We have to look at these issues for people with history of electrical injury or ECT - autopsies in animals and humans connect with symptoms seen in people - cranial nerve damage affecting speech, gait, etc 0:38:00 Having evoked potential testing will help determine problems - having a 3T MRI (and eventually 7T) with special sequencing - SWI for microhemorhaging - D3T MRI to see how things are moving 0:39:00 Also MRA sequencing on MRI shows blood brain barrier - research showed that 7 of 12 cats were not damaged by ECT - but they didn't say that the other 5 cats died and their blood brain barrier did not reseal 0:40:00 So how many humans with ECT had a blood brain barrier that didn't re-seal -- for Sarah, any odours can trigger symptoms, so she has to keep a very clean house with few chemical cleaners - her brain is no longer protected from these odours 0:41:00 Sarah's sensitivity to smells kicked in at the same time the delayed electrical injury kicked in, so they are related - Sarah has to careful in public places - she has many air cleaners in her house, completely re-did the HVAC system with extra filters that Sarah changes every 2 weeks 0:42:00 The majority of buildings don't routinely clean their buildings or their HVAC systems - or exposure to perfumes can cause symptoms - recently she went to a pancake breakfast and sitting 5 feet from the propane stove 0:43:00 She was fine for a short while, but then her speech began to slur, Sarah stood up and fell over - anything she breathes in goes straight to her brain 0:44:00 Sarah says it is important for people to know that ECT / shock treatment needs stanardization and regulated - she needs more signatures on the petition - it is an international petition and will be sent to all English speaking countries - it can be translated as Sarah has partners to translate - it is important we have these discussions in a public forum 0:45:00 Sarah says she's gleaned info from the other interviews - and that her doctor's eyes almost popped out of her head when Sarah brought her the CCI info - its weird and exciting that different mechanisms of injury can cause similar symptoms 0:46:00 Scott asks Sarah final question: what is something nice you're doing for yourself today? Sarah is excited to go to the interantional car show because they have an entire mobility section - Sarah is going with her husband to look at accessible transportation so Sarah can get out of the house and integrated into the world 0:47:00 Sarah is thankful for the gift of tickets from the San Diego car show, because without the gift, they would not be able to afford to go because all their money goes to testing, treatment and medical expenses - but is excited to get out of the house with her husband 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
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
I first became aware of Sarah when she shared a video clip on twitter of her waiting for an appointment sitting in her wheelchair. Her voice was strained and she was a bit difficult to understand, but as soon as Sarah was in a horizontal position her voice was clear as a bell. I immediately reached out to Sarah to learn more about her incredible health care journey.  Doctors diagnosed Sarah with Schizoid Affective Disorder and gave her antipsychotic medications. When those didn’t work, they gave Sarah over 116 rounds of electric shock therapy  - they put electrodes on Sarah’s temples and zapped her with electricity so her brain had a seizure. Doctors also had Sarah on 5 classes of psychiatric medications amounting to 37 different combinations. In spite of this, for 12 years Sarah lived with voices in her head 24/7 telling her how and why to kill herself - all while working toward her Masters Degree. As Sarah would eventually discover with a proper diagnosis, her psychiatric symptoms were not from schizo affective disorder, they were from hepatic encephalopathy and her brain was marinating in toxins. Once Sarah received proper treatment the voices disappeared. But that’s not the end of Sarah’s story - all those electric shock treatments have damaged Sarah’s brain affecting her speech, memory, and ability to walk.  We had to end Sarah’s interview prematurely as you’ll hear, when she was overcome with dizziness, her speech quickly deteriorated, and she had to lie down on the floor to remove the pressure on her brainstem. Listen to how Sarah’s voice changes during this - Sarah’s final words are in the voice she had before electrical brain injury. SHOW NOTES First Psychosis 0:06:30 Sarah grew up in sunny San Diego, a 3rd generation San Diegan - wonderful parents, but struggles like all families - Sarah is the oldest child and only daughter - when frustrated her Dad would say 'Well Sarah, I've not had a daughter before' - she has 2 younger brothers - her parents did their best to provide a loving and supportive environment 0:08:30 Sarah's Mom is a wonderful lady, but they did butt heads - they have reconciled and Sarah considers her Mom to be one of her best friends now - after high school Sarah moved to Rexburg, Idaho where she learned about living in snow and -30 Fahrenheit 0:09:30 Sarah went to a college made famous by (the film) Napolean Dynamite, called Rex College, but now known as Brigham Young University Idaho - graduated and transferred to BYU (Brigham Young University) in Provo, Utah - after 1 semester studying English, Sarah served a mission for Church of Jesus Christ of the Latter Day Saints and learned to speak Spanish and serve the people of Texas - after 18 months Sarah was invited to join the American Sign Language program and worked for 2 months with deaf people - and then returned home to BYU 0:10:30 Sarah had bad chronic and seasonal allergies causing asthma, sinus infections and bronchitis - growing up Sarah had been given a lot of antibiotics, like 4 - 8 times a year throughout childhood through her Mission - she got pneumonia when she got back and was put on another antibiotic and within a few doses had her first psychotic break 0:11:30 Sarah was on campus trying to find her way and she could see people dressed in pioneer era clothing - she was hauled off campus and put in the psych unit and put in a straight jacket for more then 36 hours 0:12:30 That was scary because she didn't know why they were putting her in a straight jacket - it was a very vulnerable place to be - that brought up childhood traumas she had with a babysitter - being in a straight jacket was very traumatic 0:13:30 Initially they told Sarah she was Bipolar with Psychosis - then was labeled with Schizoid Affective Disorder with Bipolar type, meaning she had symptoms of schizophrenia and bipolar - then the medication they gave Sarah could not be metabolized by her body and she became catatonic - they didn't realize ammonia was marinating in her brain - it took about 4 years of those meds before she became completely catatonic 0:14:30 In those 4 years, Sarah was able to take 1 class at a time - she was determined and worked hard to get her degree in 8 years - Schizo Affective Disorder has symptoms of schizophrenia 0:15:30 'Positive' symptoms are 'added' to the patients experience: they see, hear, taste things others don't - 'negative' symptoms 'take away' from the person: motivation, ability to speak, organize thoughts and environment - those are the 'schizoid' part - 'affective' refers to mood0:16:30Lots of mental illnesses have affective disorders: mania with high energy, difficulty following thoughts, rash decisions, depression, difficulty processing info and energy or connect emotionally with people Voices in her head 0:17:30Sarah's problem was mixed mania, so all the energy of mania, and all the symptoms of depression - plus symptoms of schizophrenia, so for 12 years Sarah lived with voices 24/7 telling her how and why to kill herself - her brain was marinating in toxins - every time she started to believe the voices, she became very proactive in seeking out help - that was interpreted as attention-seeking, not trying to prevent her own demise 0:18:30S arah would check herself into the hospital asking for help, and then be ridiculed for asking for help - she was called a 'frequent flyer' and a lot of things by staff, probably because they were frustrated they couldn't 'get the medications right' or thought Sarah wasn't being compliant - but Sarah always took her meds as prescribed, always filled her prescriptions on time because she had been trained to believe she needed those medications in order to survive, and she was not doing a very good job surviving 0:19:30 To Sarah, not taking the medications was not an option because she was told over and over that meds were the only way she'd be able to function - they kept trying different meds for psychosis, mood, depression, anxiety, and sleep - 5 classes of medications and Sarah cycled through 37 combinations and they played with the chemicals in her brain in order to find the 'right' combo that would stabilize her 0:20:30 It was difficult - they would try to make the hospital less welcoming so Sarah wouldn't want to come back because they thought she was attention-seeking - Sarah says 'dude, if I wanted to get attention I would do something good like write a book, or travel the world and set a record or something - nobody wants negative attention' 0:21:30 Sarah would endure strip searches every time she was hospitalized, which was every 3 - 5 weeks, but her father says it was more frequent because sometimes she'd be re-admitted within 72 hours - Sarah was marinating and they couldn't recognize that because there are not really any tests - they don't do cerebrospinal taps for these symptoms - they don't recognize encephalopathy very often unless its associated with seizures 0:22:30 Most doctors will just refer a patient to psychiatry instead of someone who understands encephalopathy - even a lot of encephalopathy not hepatic encephalopathy, her 1st diagnosis - and that wasn't diagnosed properly until 2.5 years ago - Sarah had learned a lot of adapting skills over the 12 years of hell 0:23:30 During that period because none of the meds worked, and Sarah became catatonic in 2002, they didn't do any blood work or brain scans to find out why she was catatonic, they just assumed they'd probably diagnosed her with schizophrenia - since she's not responding to the medications we'll give her a higher dose - when that didn't help, they said it was time to do shock treatment Shock treatment, aka ECT 0:24:30 They gave Sarah bilateral electroconvulsive therapy (ECT), where they put the electrodes on either side of her forehead and used 460 volts of electricity to briefly stimulate the brain into a gran mal seizure - they feel a therapeutic seizure should be at least 25 seconds - so if the patient doesn't seize for 25 seconds they will immediately give them more so they have another seizure - they gave Sarah ECT 3 times a week - but there was one time where she was ECTed twice in one day - every time a person seizes, the brain tries to protect itself and prevent itself from having a seizure 0:25:30 So they have to increase the voltage higher and higher - when there at 100% charge, it is 0.9MC which is below 1.0mc of immediate death - at 100% and the patient still isn't seizing, they put in an IV with caffeine so that it pushes the brain and body to the brink so you'll seize 0:26:30 They have to push through the anaesthesia and mood stabilizers that prevents seizures - the first several were not at 100% of the machines strength, but Sarah had more then a 100 at 100%, and 60% were also with IV caffeine 0:27:30 ECT was invented in Italy in 1938 - Italy has since banned it - it was brought to America - they never did safety studies - they never did any kind of scientific decision making about appropriate dosage or methods to use - there more then are 7 variables involved - it is not standardized - it is not regulated - it has never been safety tested - some people feel ECT has saved their lives - others feel ECT has destroyed their lives 0:28:30 And families will tell how ECT killed their loved one - Sarah had 116 ECT treatments over 18 months - from 2002 to 2004 - then over 14 months from 2006 to 2007 - Sarah quit against medical advice in 2007 - she was required to sign 'informed consent' before each ECT procedure, but they don't provide all the info - it says the most pressing concern would be headaches 0:30:30 Sarah had to tell them her biggest worry when filling out the forms, so she always put headache, as that was all she was told about potential side effects - but they don't understand the risks because they've never done longitudinal studies to see the long term effects or neurological factors or even addressing patient satisfaction because the the surveys get a very low response rate, like 28% - and then say of the 28% who returned the survey, 80% were happy 0:31:30 But some of those people who could not put the stamp on the letter, or needed help filling it out, or were so angry at what had been done to them that it would go immediately in the garbage - Sarah says it is interesting when you start to look at the research and ask critically 'what are they not telling us?' What are the holes in the methodology? They will use the MMSE (mini mental state examination) a simple 18 question test for brain injury and dementia 0:32:30 What they don't say is that the MMSE can be passed by people who've had lobotomies - so it is immaterial, it can't be used at school or work for accommodations - so not a good measure of the damage actually caused, but it is the most used assessment for people having ECT....if they're given an assessment, but most people are not Memory loss 0:33:30 Sarah can't remember the first few ECT treatments because she can't remember the first 36 years of her life - she's lost 85-90% of her memories - she was 34 years old when she stopped ECT, but it took another 2 years for her brain to start to make new memories - Sarah has 38 journals and she reads them frequently so she knows what has happened in her life - so unless she's read it read recently, she wouldn't be able to tell many specifics 0:34:30 When Sarah 12 years old a Sunday School teacher told her about Wilford Woodruff who wrote in a journal every day by the time he was 90 he had many volumes - at the time Sarah wanted to be a writer and decided she would journal daily - she's very grateful, without them she wouldn't know about family vacations or formative experiences - she doesn't remember her grandparents and holidays - all our life decisions are based on our previous experience and memories - our relationships are based on shared memories 0:35:30 It can be very challenging living without formative memories - Sarah had a massive identity crisis because she didn't know the symptoms of memory loss 0:36:30 When Sarah looks at pictures with her family, its like playing 'Where's Waldo' because if she can find herself in a picture, she knows she'd been there, but it doesn't trigger any memories - it has been a grieving process about her loss, but she's learned its not helpful to focus on her loss, she needs to be moving forward because she has a life that still needs to be lived 0:37:30 In 2015, Sarah was on her 37th combo of meds - she'd been on meds for 17 years and her meds just stopped working - they generally only work for 5 years, part of that the brain has become dependent and the dose has been raised as high as they can 0:38:30 Sarah had just been married, had just finished her Masters and just started working full time when her meds stopped working and she was scared spit less and she didn't want to freak out her husband who had never seen her when she was very symptomatic, and she didn't want to lose her job or all her colleagues have know because Sarah worked so hard to establish herself as a professional - she also worried about her family because she was finally starting to re-build bridges that had been burnt when she was very symptomatic 0:39:30 Sarah was trying to minimize her symptoms, but was very scared - a friend had been trying to get Sarah interested in micro-nutrition, but Sarah had put her off for 18 months - Sarah is a scientist at heart and the friend gave her the research to review - randomized control trials, solid methodology, so Sarah took the info to her psychiatrist and they decided to taper Sarah off the meds - but psychiatry is not prepared to taper people off meds 0:40:30 Sarah started taking the micronutrients and after a few weeks started to feel cognitively weird so talked to the manufacturer - they said you've been over-medicated and should taper off the meds, your brain now doesn't need the medications as much An accurate diagnosis: Hepatic Encephalopathy 0:41:30 The psychiatrist says that Sarah is 50mg over the upper limit of the antidepressant, so they cut that 50mg first - Sarah never understood withdrawal until she worked with someone who didn't understand tapering - it was a very scary process, caused a lot of problems 0:42:30 They learned to support Sarah's body by supporting it enzymatically , a lot of amino acids, specifically protein isolate to support her blood sugar - she drank shakes every 90 minutes and she would function very well, but if she missed the protein isolate shake she would deteriorate very fast 0:43:30 Sarah had a friend who was getting amino acid IV, so Sarah started looking and found Dr John Humiston and he recognized the symptoms of withdrawal - by this time Sarah had been off the meds for 18 months - he said they first needed to get her gut healthy before amino acid IVs 0:44:30 Sarah was like 'dude, food has never affected me, hurt or harmed me, don't worry about it' - but he had Sarah track her diet and then cut out fermented foods, sprouted food, nuts, dairy, a whole swath of food - he recognized all those antibiotics Sarah had as a child caused an overgrowth of candida and that caused hepatic encephalopathy - Sarah went home and cleared the kitchen of foods that did not meet the new diet 0:45:30 Within 3 days, the psychosis Sarah had been experiencing left and she hasn't had it since - except once when she took an antibiotic for a kidney infection - by the 2nd dose she was being followed by someone she knew was dead 0:46:30 And being talked to by a dead ancestor - by the 3rd dose she was paranoid, pacing, pulling her hair out, non-verbal, shaking, sweating - her family took her to the ER but she didn't want to go back and being given meds, she'd just gotten off them - Sarah knew she needed to occupy her mind with something systematic, so she began folding paper, tearing it, just doing something very basic 0:47:30 When the psychiatrist saw the very tiny pieces of paper he asked Sarah what was going on - she said she thought he had cameras watching her, but she realizes her brain is on fire and she needs to reign it in - he looks at Sarah and said 'I've never had anyone say that before - tell me more' - Sarah told him she was faculty as San Diego State University and teach in the clinical classes about psychiatric rehabilitation and recovery and this is one of the strategies I teach people who are dealing with false voices that are distressing and they need something simple as distraction - he says 'you're doing a good job, you can go home' - that was the 1st time Sarah had gone to an ER and walked out 0:48:30 Sarah says we have yeast producing bacteria in our stomach to process food, and when they ferment our food they produce over 20 different alcohols as by-products, in small amounts is no big deal - but if you have fungal over growth they produce a lot of by-products Dystonia 0:49:30 That goes for bacterial by-products too - we need to have a healthy balance of bacteria, yeast and fungus in our guts, if we don't these by-products start producing too much of these alcohols like acetone, acetate and start marinating the brain and can cause problems with behaviour, emotion, sleep, autoimmune - because brain and body trying to maintain healthy balance - Sarah found a doctor who put her on anti-fungal medication and within 3 days all of her psychiatric symptoms were gone 0:50:30 Sarah tries not to dwell on the fact that a strict diet and anti-fungals may have prevents 17 years of suffering - missed out getting married earlier, missed out on having kids, missed out working and earning a retirement, missed out on family events 0:51:30 It caused a lot of strife and hardship on Sarah's family - if she dwells on it she gets pulled into the 'poor me' gravitational pit, so Sarah works hard on re-focusing on gratitude and here and now, and focusing on what she can do to prevent this from happening to other people - Sarah has to make meaning of her experience, its the only thing she can do 0:52:30 Sarah takes that sense of oppression, injustice, being misunderstood, misjudged, judged harshly - Sarah needs to make sense of her experience so that she can feel like what she went through was not in vain - Sarah has been on the strict diet for 2.5 years and must adhere to it 0:53:30 She was on anti-fungal meds for a looooong time: 18 months - since she'd been infected for a looooong time - she still takes supplements to support her gut - but about 7.5 years after the last shock treatment, Sarah experienced a worsening of neurological symptoms, worse then she'd ever had before - problems with muscle twitches (fasciculations) and fatigue easier, problems with her voice 0:54:30 Sarah started to have dystonia, especially the muscles in her neck, and started have dizziness when exposed to a lot of visual or auditory hallucination - so in the car this past April, she was driving for about 45 minutes and by the time she got to University to teach, she had difficulty standing to get out of her car 0:55:30 Sarah started to have muscle contractions on one side of her body, she didn't realize she'd been over-stimulated driving - she then drove to her doctors appointment, a 50 minute drive, and then started to have muscle contractions on the left side of her body and pull her it into a contorted position 0:56:30 Sarah then started to feel a current of electricity down her sternum with diaphragmic paralysis - then she'd be able to breathe again - then the right side of her body would have contraction and contort her body into weird positions - in went back and forth for the next 4 hours - it was intense at first, then less so with more time between - her doctor started to refer her to a neurologist and she saw lots of them Iatrogenic hot potato 0:57:30 When they see Sarah has a history of shock treatment, then the orders for their testing don't get placed, for brain scans, EMGs, etc - instead Sarah is referred to another neurologist, and so and so on - Sarah is now on her 7th neurologist - Sarah has become an iatrogenic hot potato - she thinks the neurologist recognize that she was harmed by treatment, so they keep passing her along 0:58:30 Finally Sarah found a functional neurologist, he was first a chiropractor then did 2 years of neurology - he did VNG (Videonystagmography) - they put goggles on Sarah to track her eye movements and move dots in her vision - supposed to be 45 minute test in a bunch of different ways 0:59:30 The interesting thing was they were able to create a concussion response - with that stimulation, one of Sarah's pupil's was huge - they stopped the testing and said they needed to let her brain rest, and then continue the testing later 1:00:30 A decade previous, Sarah found a brain injury specialist, and she asked why Sarah why she was wearing sunglasses indoors, Sarah said 'when I take them off I get a bad headache' - the specialist said 'oh, you have a brain injury' and Sarah said 'no, I had shock treatment' - the specialist said shock treatment is brain injury - but Sarah protested that her doctor told her the symptom would go away - since then, Sarah has learned through research that one doctor, a neurologist at Berkeley, outspoken against ECT spoke at the New York State Assembly 1:01:30 He told them the ECT put out 100 joules of electricity, that is the equivalent force of dropping 73 pounds (30 kg) onto a brain from a foot (33 cm) above it - for Sarah that was 116 times, so essentially Sarah has a repetitive brain injury and developed the bulgar symptoms seen in people with motor neuron disease 1:02:30 Motor neuron disease have 4 risk factors: people with ALS get it due genetics; people with toxic exposures; people with a history of electric injury; people with history of repetitive injury - Sarah doesn't have the genetic component, but does have the other 1:03:30 Sarah neurologist says she probably has a conversion disorder since she's not happy with her ECT experience - Sarah says that doesn't explain the saliva problems, speaking problems, breathing problems, thinking, walking, heart, etc - Sarah found a good GP who would order the tests the neurologist wouldn't order so she can take the results to the neurologist 1:04:30 The ECT research is constructed so that they don't talk about electrical injury - they never track patients more than 9 months - delayed electrical injury happens 2.5 to 10 years after treatment - Sarah's onset was about 7.5 years after her last ECT - and Sarah has worsened since then 1:05:30 Research on delayed low voltage electrical injury have studied quite a few people - low voltage is less then 1,000 volts - electrical injury has 2 components: the immediate effect - for Sarah this was memory loss, balance issues, proprioception issues Delayed electrical injury 1:06:30 Aphagia, word finding problems, executive function - but they've realized that a lot of people with electrical injury have 'delayed electrical injury' - that research shows a lot of motor neuron problems - it fascinating they've been able to separate these 2 things (electrical injury vs ECT) 1:07:30 But natural law doesn't respond to benevolent intent - good intentions is not going to change how the human cell responds to electricity - it is so apparent that delayed electrical injury and ECT survivors share the same speech, swallowing, dystonia 1:08:30 Fatigue and dropping things because no longer have ability to hold them - we're on a spectrum - Sarah knows 4 people who've had ECT and are on that symptom spectrum - it needs to be studied - Sarah has annotated bibliography connecting the research on low voltage injury, delayed voltage injury, and ECT and she needs it to be published 1:09:30 Doctors are siloed in their research and not connecting dots among themselves - they assume the organ they specialize in is not connected to the rest of the body - we can't have siloed research, they are excluding important data - Sarah would never have thought that her neurological symptoms had anything to do with the ECT if not for another person who had ECT and has similar symptoms to Sarah, and this person was forced to retire from being a trauma nurse 1:10:30 When the nurse heard Sarah's story, she told Sarah she had to look into electrical injury research - Sarah was like 'dude, I was never told any of this when I was given my 'informed consent'' - recently, one of the manufacturers of ECT devices had a lawsuit against them and they settled out of court 1:11:30 Shortly after that, the manufacturer updated their user guide, and buried on page 4 is '7 risks associated with permanent brain damage and permanent memory loss' - all the informed consents need to be update, internationally - patients need to know about the risk of permanent brain damage, permanent memory loss - a lot of doctors don't take these risks very seriously so don't inform their patients about them, and minimize the risks - because it is not standardized or regulated, every doctor does it differently 1:12:30 Doctors are never followed ECT patients longitudinally - an inpatient doctor will not be following up with that patient 5 or 10 years later, so they're not going to be seeing the effect that survivors are seeing among themselves - that is why Sarah started an international petition to update informed consent, update core competencies for doctors trained and certified to give ECT, pre-assessments and post-assessments to track longitudinally 1:13:30 When people starting having cognitive problems, they are not even assessed for brain injury and given rehab for a better quality of life - Sarah had to navigate living with ECT brain by herself, with her family saying 'the doctors said your memory would return, so get over it' and her doctor saying 'you'll get your memory back, so get over it' - it is a constant battle - going forward, if we had something safety tested......"Sorry, I'm getting dizzy" Sarah's speech deteriorates during interview 1:14:30 Scott: Sarah's speaking deteriorates - she says we should end the interview - I am concerned about her immediate well being - I ask if I should stay on the line with her to make sure she's safe 1:15:30 Sarah says she should lie down because "her brain stem does better when its not under pressure" and carries her laptop with her and lays down on the floor - Sarah takes a few breathes and says "Its like immediately" and voice is perfectly clear, unlike the entire interview when she was sitting up - I ask Sarah if she needs to call any one? - She says she'll just hang out on the floor for a while 1:16:30 Sarah says "Its weird to find your new normal. Who would've thought when you were a kid 'by new normal will be laying on the floor so I can think and speak clearly" - we laugh at the absurdity of it all - Sarah continues: when she did the research into the neuropathology of the animals they tested, and the autopsies they did in the '50s, all the animals had compressed brainstems from ECT - so Sarah's symptoms are very consistent with the animal studies - and consistent to what you would expect to see in a human 1:17:30 I ask Sarah if she's heard of 'cranio cervical instability (CCI)'? Sarah says she recently heard of someone with mold exposure who has CCI - I reply "Jen Brea" and Sarah confirms and says she has a history of mold exposure - the building she did her research has history of flooding and a bad roof - one time when she came home from vacation, she had left her air conditioning on in her small apartment, the water drain had plugged and that caused a water bulge in the paint - it took the building manager 3 weeks to replace the wall and carpe 1:18:30 You can't isolate any of things Sarah has experienced, as humans, our body keeps the score, it is influenced by what it is exposed to, and throughout our life, it becomes a cumulative effect - I tell Sarah that I will send her Jeff Wood's website link, Jeff is 'patient zero' for CCI and it was his experience that prompted Jen Brea to look into CCI 1:19:30 Jeff was bedridden for 3 years - they both had neck surgery and are almost completely symptom-free - Sarah says the idea of surgery scares her to death - she's been exposed to so many of the gaba drugs that she's developed acute respiratory responses when given anaesthesia - even lidocaine or novocaine will trigger phrenetic nerve paralysis - it will look like Sarah is having convulsions, but it is the frenetic nerve malfunctioning1:20:30Sarah says "My poor body, I'm doing the best I can, I'm only 44 years old and I'm having a lot of problems" 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
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Creator Details

Location
San Diego, California, United States of America
Episode Count
3
Podcast Count
1
Total Airtime
3 hours, 21 minutes