Medical Error Interviews
Susan Shepherd: Undiagnosed ADHD treated as mental illness with toxic psych meds

Susan Shepherd: Undiagnosed ADHD treated as mental illness with toxic psych meds

March 30, 2020

For 20 years, accountant Susan Shepherd was given multiple psychiatric medications -- but she didn’t get better, she got worse -- to the point of unrelenting suicidal thoughts.

Doing her own research into psychiatric medications, and recognizing how her body was responding to them, Susan had to go around her GP and psychiatrist to get to a neurologist for a proper diagnosis: ADHD and dyspraxia. As Susan says, “I have gone through life with an unrecognized neuro diverse condition”. 

But Susan’s good news of finally getting a correct diagnosis was countered by the horror show of trying to withdraw from the psych drugs. Doctors rarely inform patients about the disturbing side effects a person can experience going through withdrawal and will often deny those symptoms as attributable to the psych meds, and dismiss them as part of the patient’s so-called mental illness.

Unsurprisingly, Susan is angry at the medical system for pushing unproven and toxic psych meds on trusting and unsuspecting patients like herself.

Now Susan is sharing her story of how she overcame severe withdrawal symptoms so others avoid the same fate of years of pysch meds causing physical and mental suffering, social and emotional shame, broken relationships and lost careers.

In spite of the multiple losses caused by being poly drugged for years with mind-numbing and intellect-dumbing psych meds, Susan feels better and more alive in every way today.

SHOW NOTES:

0:06:00 Susan was born in Scotland and her family immigrated to Canada when she was 6 -- her brother had asthma and the Scottish climate was not helping, so they moved to Canada where they had some relatives - and her brother's asthma was helped - her father got a sales job in Edmonton for a few years, then to Winnipeg, Thunder Bay, Vancouver, Toronto - but she now lives in a small town
0:07:00 Susan went to university for a couple of years and got married at 20 years old - her health issues started about 2000 - but as a child she struggled with depression, not feeling she was good enough, perfectionism
0:08:00 Normal emotions we all experience and have to learn to deal with - but in 2000 things went wrong - Susan's mother died a few years earlier and it was traumatic for Susan, it was the lynch pin for her poor health - to deal with the grief after her Mom died, Susan went back to school with 2 small kids at home - one of the things she was worried about was being older and impovrished
0:09:00 She spent 10 years working full time, getting up at 4:30am, 2 kids and husband, to ensure she would retire well and toward her CMA (Certified Managment Accountant)
0:10:00 In rerospect Susan was experiencing deep grief for her Mom, who was her anchor - so Susan lost a big piece of herself and she didn't get any support
0:11:00 She's not blaming anyone, it was circumstances - she's not blaming her family and friends, its just the way it was
0:12:00 Her marriage was falling apart at the same time - Susan ended up at a psychiatrist's office - years earlier she had tried an antidepressant but didn't like the way it made her feel so she never continued to take them
0:13:00 But because Susan was feeling so bad and her family was worried, they pressured her to take the pills - the psychiatrist started her on an antidepressant and benzodiazipine (clonapin) - same on Jordan Peterson is trying to get off of in Russia - Susan was polydrugged right off the bat
0:14:00 In retrospect Susan can see what happened - some of the meds were tranquilizers that numbed down her emotions, so she couldn't 'feel' as much, so she felt better - but there were other side effects that were hard to notice at the time - some doctors are speaking out about these side effects
0:15:00 "Spell binding" is a term Peter Breggin uses, he's an expert witness - the brain can't tell you if there is something wrong or not working properly
0:16:00 Susan tried to come off them after a year or two, and felt horrible - her doctor said it was her mental illness that was making her feel bad (not withdrawal) - Susan wanted to stop them because she wasn't feeling good, but it was hard to explain good at the time: couldn't think, couldn't focus
0:17:00 It was like an electrician randomly cut some connections and fused others together, so Susan didn't feel like 'herself' - she was a very social person, but she wasn't able to communicate with friends, or have an intellectual debate - although she knew facts and info, she couldn't get it from her brain to her mouth - very frightening
0:18:00 We are all individuals with different connections, so the meds don't make sense to Susan - there is no evidence, there use is not based on fact, no tests
0:19:00 They are making billions and billions - and psychiatrists only review what medications you've been on and give you more - they know nothing about human behaviour - and the many others she's spoken to have had the same experience
0:20:00 Instead of finding out what's happening in your life that may be impacting mental health, they immediately diagnose a brain disorder and meds will fix your chemicals - but at the time, Susan believed the psychiatrist when he said she needed the meds - Susan added meditation, research, deep dives into her past - she tried lots of things to feel better - but nothing worked
0:21:00 And they wouldn't work because her brain was being chemically altered and tortured - Susan felt so bad that the last few years on the meds she thought about suicide all day long, and would cry - that is not existing, no quality of life - and then when she got off the meds she realized what the system had done to her
0:22:00 Now Susan sees the research about withdrawal symptoms and realized it wasn't mental health - Susan was on the meds for about 15 years, stopped in the last 3 years
0:23:00 Susan was feeling so bad that instead of just crying during the psych appointment she asked him to 'do something, I can't exist like this' - he suggested ECT (electroconvulsive therapy, or shock treatment) - but Susan had a fear of ECT, she thought it was barbaric - the idea of zapping someone's brain with electricity has no logic - it was used to torture people
0:24:00 Susan had read about some of the torture techniques of WW II - ECT sounded risky and dodgy so Susan said 'no' to the psychiatrist - so he sent her to a specialist in psychiatric pharmacology - she also participated in a cogntive research study, and she was scoring well below her potential
0:25:00 The psych specialist told Susan she had treatment resistant depression - putting the onus on the patient, it is their fault they feel that way - in her record, he had listed about 30 meds for Susan to try, some of them diabetes drugs - he suggested a stimulant, an amphetamine and Susan agreed
0:26:00 Susan says no matter how bad you feel without psych drugs, it doesn't compare to how bad you can feel on them - within 2 hours of taking the stimulant, the horrible feelings went away - Susan started to research it, what is it? what is it used for? what is it doing?
0:27:00 Susan's research found the drug was used for ADHD (attention deficit hyperactivity disorder) and then researched what ADHD was - and recognized herself and that ADHD could explain a lot of what she experienced growing up, but was only diagnosed 3 years ago - the more she researched all the meds, the more she didn't want to be on them, some of them were contraindicated for people with ADHD
0:28:00 ADHD is neurodiversity, it is not a mental illness - realizing what the stimulant did for Susan, she wanted to get off the meds
0:29:00 The psychiatrist said 'no, you need to take them - you don't have ADHD and I won't send you for testing' - Susan decided to come off the meds any way and she didn't go back - she used the amphetamine to wean herself off the psych drugs
0:30:00 While the stimulat was good for Susan's brain, it didn't agree with her body and she got side effects - so she used it as little as possible - only when she couldn't stand the suicidal thoughts - she would break open the capsule to get a micro dose, far less than the minimum dose - about every 4 days to take her out of the suicidal mindset, a reprieve for a few days - eventually she got better and didn't feel like that any more and that's how she got off them
0:31:00 Susan tapered off over a month - she didn't know how to do it, and has read much about withdrawal - hers could have been much easier if she'd known 'withdrawal' was a process
0:32:00 Susan had been brain washed into thinking she was mentally ill, so also had to overcome doubts of her own experiences - she had to give her brain time to heal
0:33:00 Susan feels 100% better - last summer Susan was invited by a friend to a cottage and Susan had a strangely familiar sensation and realized it was excitement, she hadn't felt it in years - those things are still happening - much of her emotional life was gone for 15 years
0:34:00 The more she heals, the more she realizes she lost during those years - it is painful, a lot of loss - she lost friends, family - her sons are not even aware Susan is off the psych meds, there was no fight, they just drifted away - there's no blame, things happen - so many people's lives have been destroyed and ruined by these meds
0:35:00 Its a public health crisis - the lies and deceit is still going on - its hard to recognize that human beings can be that depraved
0:36:00 In her accounting career, Susan couldn't figure out why she couldn't concentrate or think, was losing control of her emotions, it was very difficult and she kept losing her job - she tried so hard, repeatedly - not only was she damaged by the drugs, but by beleiving that she was the problem, undermined her confidence
0:37:00 So Susan had a lot of negative self talk, self blame - but it has been a huge shift since she got off the meds - she got herself back - Susan has a dear friend of 40 years - they drifted apart during the 'psych years' but have re-connected
0:38:00 Her friend said to her 'you're back' and it was nice to hear
0:39:00 Susan improved a lot the first year of the meds - there would be short amount of time when she would feel 'like herself' and they became longer and more frequent - Susan held onto those as motivation - but it takes time, and you have to be kind to your brain and your self - compassionate
0:40:00 The brain has to re-balance - not to mention the physical withdrawal like nuerological issues - Susan experienced body temperature dysfunction - Susan would get hot and felt like she was drenched in candle wax - her feet swelled up and she counldn't walk barefoot for 1.5 years because they were so sensitive and swollen
0:41:00 Her body needed to detox from the chemicals - headaches, rapid heart rate, brain zaps in her brain, a very common and very frightening and unpleasant - with too much alcohol, it will be out of your system in a few days, and you'll feel better
0:42:00 But it is not the same with psych drugs, the recovery is years - and some people never make a full recovery - Susan doesn't know if she'll fully recover because she's still seeing new things re-emerge back to her - so Susan is still healing - it was 1.5 years ago she had the last micro dose of amphetamine - also healing from how the medical system treated her
0:43:00 Going through the rage, the grief, the self-blame - research helped Susan realize what the meds were doing - there is also online support, like the over 100,000 on the Benzo Buddies Facebook, for people withdrawing from benzos
0:44:00 It is hard to find research on outcomes, no data available - Susan has her medical file that was sent to CPP Disability (Canadian Pension Plan)
0:45:00 Susan didn't realize the inner strength she had - the more she found out, the more she wanted to know what happened to her, and what's happening from a big picture perspective
0:46:00 Susan says it is horrifying what is happening, worse than she could've imagined - Susan doesn't think doctors have any business prescribing meds they don't know about - psychiatrists do know, but GPS may not, they are following what they are being told
0:47:00 Looking at the side effects of those meds, it is what they are prescribing the drug for - it is a money maker - but GPs are responsible for 60-70% of psych med prescriptions - and they prescribe them for menopause, skin rashes - and they don't understand what they're doing - but there is no accountability
0:48:00 Susan called over 20 lawyers but not 1 would even talk to her about medical malpractice because she actually has ADHD - Susan wants to know what they did, and how they can explain that she's well now without taking the psych meds
0:49:00 The UN Rapparteour is starting to describe psych drugs as psychological torture - lawyers know they have less than a 2% chance of winning even if they can get the case to trial - and taxpayers (in Canada) pay for the doctor's lawyers
0:50:00 Doctors are a protected social class - protected from legal consequences - they are omnipotent - they are medially and legally untouchable - Susan knows one doctor who was brought 7 times on sexual assault to the College of Physicians and Surgeons, and it wasn't until the 7th time that he lost his license
0:51:00 And that was just 7 peopole reporting him - doctors cover for each other, and lie to protect each other - it is systemic - Susan has no contact now with the medical system, she has zero trust - she knows they lie and she can prove that - they don't know about the meds, and she can prove that
0:52:00 If she had to go to the doctor now, she'd do her own research, review tests - they don't know about the meds, and they don't know about nutritional deficiencies that can cause mental health symptoms
0:53:00 Most people are short on magnesium and vitamin D - it is missing out of our soil and food - those supplementations may help with symptoms, but doctors will prescribe psych drugs - and they also deplete vitamins and minerals
0:54:00 All kinds of simple nutritional supplements can help - some of the 'old wives tales' make a lot of sense - they may not have known why back then, but science does show
0:55:00 baking soda for example can help fend off virus and bacteria by creating an alkaline environment - but it all boils down to a patient safety issue - there is a direct correlation with the increase in antidepressant and antipsychotic prescriptions and the suicide rate
0:56:00 The increase in suicide after starting these meds is attributed by psychiatry as a result of the extra energy they create - Susan says 'no', the psych meds mess up brain chemistry and some people become susceptible to acting on a suicidal thought - psychiatry know this - there is a specific enzyme that processes these meds, and if you're deficient in it, you're in for a really rough ride
0:57:00 Susan says when you look at the research, the results are cherry-picked, and conflicts of interest because the research is usually sponsored by the pharmaceutical company - Susan was shocked to learn many of the papers are ghost written, getting Harvard professors to sign off on them - so its just marketing
0:58:00 Susan doesn't know what her future holds - she is financially ruined - she has to reinvent herself and get back to work, she'd love to be working, but her reputation has been destroyed - she's stuck and doesn't know what to do , it is frustrating, but she is figuring it out
0:59:00 Because she feels so much better, she has hope again - it was gone - when you have hope you never know how your life might change - Susan didn't struggle to get this far to give up now - she wants to prevent others from going though what she went through - it took away her potential, her every thing - the life she could have had was taken from her - and now that she had it back, she wants to make the most of it
1:00:00 Susan is able to socially interact again, including reaching out to Scott to be a podcast guest - she wouldn't have been able to do that 6 months ago - Susan now feels like she's got momentum in a good directions - she now feels hope and excitement, instead of terror and wanting to die
1:01:00 Being able to speak to people again, and access her thoughts, something she was not able to do before - Susan would love to be able to use her lived experience to help others - Susan looked into peer support, but it was just about getting people to take their medication
1:01:00 There are online psych survivor groups, and Susan has done a little peer support that way - it bothers Susan that we are spending billions of dollars on a mental health care system that doesn't work
1:03:00 We're wasting our money and damaging people - and they can't prove outcomes, there is no data - they are lying like sidewalks and nobody is calling them out on it - is everyone more concerned about their stock porfolio?
1:04:00 Most psychiatrists make close to half a million dollars a year, and they are poisoning people - take a look at their waiting rooms, the people are not 'there' - and that's the doctor's fault
1:05:00 The marketing and advertisements make public awareness difficult - Susan says more people would successfully come off the pysch drugs if they had proper info and support - but the critical piece is to stop people from taking them
1:06:00 So there needs to be an alternative - right now people are not being listened to, and end up taking pysch meds and getting into a mess, and this is what is happening to millions of people -- I ask Susan how's she's going to do something nice for herself today? -- Susan says she's already gone for a walk and always enjoys the little things in life
  Connect with Susan Shepherd: Twitter @BlackshepSusan Email: is_shepherd@hotmail.com

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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.

Wade Walters interview: Disability insurance’s ‘exercise therapy’ makes him more sick and disabled

Wade Walters interview: Disability insurance’s ‘exercise therapy’ makes him more sick and disabled

March 23, 2020

No one who is sick and disabled would expect their disability insurer to cause them more harm.

But if you've got a disease where exercise makes you even more sick and disabled, the insurance company may require you to do 'exercise therapy' or loose your disability payments.

It becomes a Hobson's choice: either do as the insurance company says and get even sicker -- or loose your income.

Why did Wade Walters’ disability insurer subject him to contraindicated exercise therapy - not once but twice - that has caused Wade to be permanently sicker with an even lower quality of life?

And what is to stop the insurer from forcing Wade to undergo more harmful treatment?

When corporate insurers demand a so-called therapy that manifests as harm to already sick patients, when does the government step in to protect its vulnerable citizens?

SHOW NOTES:

0:05:00 Wade was born in central Alberta, Canada, into a big family, and they were very normal compared to stories he's heard of other families - Wade is the youngest of six children
0:06:00 His mom stayed at home to look after the kids, and his father drove a big tanker truck in the oil and gas industry - after high school, Wade started working in the sports goods industry and moved to Vancouver
0:07:00 When Wade looks back on his health, in 2004 - 05 he started to say to his doctor that he was tired - he found Wade's testosterone was low, so Wade supplemented and that helped a bit, but he was still tired
0:08:00 Wade was then also diagnosed with low iron, and they fixed that, but the tiredness persisted - then Wade has oxygen testing done and that warrented a sleep study and that indicated moderate sleep apnea, so he got a CPAP machine - after a month he told his doctor he was expecting it to improve his fatigue, but it didn't
0:09:00 Wade told him that he had friends on the CPAP and for them it was night and day, changed their life completely, they had a lot more energy - but for Wade, it was a bit better but not much - but the doctor didn't report that in his notes, he reported the CPAP was working fine - Wade also had other tests done, pulmonary stress test - he had EKG done because of his severe pain in his lower back, it was so intense Wade thought he had cancer
0:10:00 Wade got progressively worse, and finally got a diagnosis in June 2018 of myalgic encephalomyelitis, or ME (aka chronic fatigue syndrome) - but that was only left his original doctor
0:11:00 Wade realized that doctor was doing the same tests over and over, and expecting something different - Wade decided enough was enough when the doctor wanted to send Wade to a psychiatrist - Wade then went to a walk in medical clinic - he had asked his previous doc for a referral to an internist, but that never happened
0:12:00 But at the walk in clinic, Wade got a referral to an internist - and about a month later he got the ME diagnosis - he'd not heard of ME but then started to do research, but didn't really understand much of the technical info, so it took a while to understand
0:13:00 Then it took a long while for him to accept the diagnosis - 'why would affect me?' - everything else that has happened to Wade, he's recovered from, but this he couldn't do anything about - there was a hope that maybe it wasn't ME, but something else
0:14:00 Wade hoped he had something treatable so that he could get better - ME symptoms include so many more than just fatigue
0:15:00 Wade's new doctor at the walk in clinic had other patients with ME, so was quick to pick up on it - even though Wade rested as much as he could, there were not enough hours in the day to rest so he could be ready for work - in 1992 Wade started working in the financial industry, and licensed as Certified Financial Planner in 1994
0:16:00 Because Wade had gained a lot of experience by the time he got very sick, his role was fairly automatic so he was able to keep working - but when the organization started to change procedures, etc, Wade's cognitive impairment symptom became less manageable
0:17:00 Wade's last year of work he was really struggling cognitively, he had to double and triple check his work - even typing was becoming challenging, it wasn't automatic anymore, he had to think about which finger to use - he also started having trouble remembering how to spell words
0:18:00 Wade would arrive at work exhausted and try and figure out how he was going to make it through the day and do the work
0:19:00 In August 2018, Wade couldn't continue to work, it was too risky for the business - Wade's pain in lower back was constant, and so intense at times he couldn't sleep - it would radiate down his right let to his knee, and up his body to his shoulder blade
0:20:00 Accupuncture was helping with the pain, but it wouldn't go away - finally Wade found a massage therapist who managed to remove the rest of the pain
0:21:00 So in August 2018, Wade went on disability and got a doctor's note saying Wade is unable to work at this time - Wade's employer was responsible for paying short term disability for 22 weeks - then the insurance company pays the long term disability after that
0:22:00 Although the employer is paying disability for the first 22 weeks, the insurance company is managing the disability claim
0:23:00 The insurance company didn't respond to any of Wade's email, phone calls for over a month after submitting all of the forms
0:24:00 but the claims manager never once contacted any of Wade's care givers, not one of them - so Wade is waiting with no info about income
0:25:00 Because the claims mangere was unrespsonsive, Wade went to her manager - finally on October 10th the claims manager contact Wade to say his claim was denied - so it was an automatic denial - Wade contacted her, and she said she wanted to more info - Wade asked what kind of info?
0:26:00 She said 'its all in the email', but the email just said more info, and didn't specify what - Wade was now frustrated, pissed off and hadn't been paid in 2 months and it didn't like he would ever be - his health was deteriorating because it takes a lot of energy to gather the info
0:27:00 Wade realized he couldn't physically or cognitively respond on his own so starting looking for lawyers and found one by late October, a labour lawyer - and she said 'why did they deny you - it makes no sense - this is a slam dunk' - and the lawyer wants copies of all the documentation, including the insurance policy
0:28:00 But the insurer refused to give a copy of the contract - so Wade contacted his employer to get a copy
0:29:00 They sent him 1 small portion of the policy - Wade said he needed the whole policy and had to fight with head office - it took weeks of emails and phone calls before he got a copy to give to the lawyer - the lawyer said this would be easy, just need to get doctors on board, and she sent it off to the insurer at the end of December
0:30:00 Wade submitted supplemental info from his doctor and lawyer - in early 2019 Wade was refused again - by this time Wade has spent about $4000 on legal fees - the lawyer says let's submit everything for all the doctors you've seen
0:31:00 It ended up being a couple hundred pages - Wade's doctor wrote another letter, a Physicians Statement, it cost Wade $1000
0:32:00 Finally in late June Wade insurance disability gets approved - that was a huge financial relief - the insurer paid Wade retroactively, but his employer didn't pay the 22 weeks until the end of August - then the insurer wanted Wade to do a functional assessment
0:33:00 Wade saw an occupational therapist - he spent 1.5 days with them for assessment - Wade did super bad on some the tests - the tests were 'real life', like balancing a ledger - easy peasy right? - but Wade couldn't do it
0:34:00 Another test had Wade focus on a task, but there would be a sound interruption and Wade was to count the number of tones at the same time as focusing on the task - but Wade could only do 1 or the other at a time
0:35:00 They also did a physical assessment, like lifting, balancing, hand grip - another test had Wade go shopping with a budget at super store and he failed at that too
0:36:00 The hallmark symptom of ME is known as 'post exertional malaise', and that means any exertion, like walking up a couple of flights of stairs, carrying groceries, will bring on ME symptoms hours or even a day or 2 later - Wade doesn't know if the occupational therapist (OT) knew about this hallmark symptom
0:37:00 Wade was quite sick and tired after the 2 days of assessment - that means a lot of horizontal time, only being vertical when necessary
0:38:00 It took 5 or 6 days for Wade to recover- Wade did not see their recommendation for treatment - the OT asked Wade if he wanted a copy of the report and Wade said yes - the OT said he could get it from his insurer, so he did ask the insurer
0:39:00 But they never sent anything - Wade asked the OT for a copy and she finally sent it in August - but now there is a Rehab Manager involved and he wants Wade to do OT
0:40:00 In Sept Wade saw the OT, and he explained about ME - but they wanted Wade to be on 'graded exercise therapy' (GET) - but the people with ME know that exertion makes them sick, so GET will only make them sick
0:41:00 So they had Wade do physical exercises and cognitive exercises - 1 hour of physical exercise, plus lifting weights, per week - and also 1 hour of cognitive exercise per week
0:42:00 So that activity was added on to Wade's regular stuff, like going to the doctor, showering - but showering doesn't happen too often any more, too much effort - Wade could not complete the 6 week program - so Wade was sicker then when he started the 'therapy'
0:43:00 The OT said she'd send in her report, but it was the claims manager that would decide what would happen - Wade had to get his doctor to write another note, and the doctor was quite terse with the insurance company: "Wade was disabled and would likely remain disabled."
0:44:00 But the Rehab Manager wants Wade to try GET again - Wade agreed only if they scaled the 'exercise' way back, and the Rehab Manager agreed - The OT did have good advice about pacing Wade's energy - like only doing things in maximum 10 minute efforts before resting - so if he couldn't finish the dishes in 10 minutes, that's okay, he'd go lie down
0:45:00 Wade gave the OT info from Dr Myhill in the UK about safe exercising for ME patients - very slow, light weight repetitions - so that's what they tried - it took about 20 minutes with the OT, and only 1 set of each exercise, with maybe 6 reps
0:46:00 By the end of December Wade had to tell the OT that it was too much, and by that time the OT was going to Wade's house so he didn't have to travel - so the OT saw how much Wade was really struggling
0:47:00 At the end of January, Wade had not heard how the insurer was responding to Wade's inability to do OT - but the 'treatments' made Wade sicker - he has not recovered to his previous ability before 'treatment' started
0:48:00 Wade was starting to feel a bit better until the insurer required more testing and the OT required exertion - he did have a routine that worked, but now he's too sick for that - he's not had a 'good' day since December - Living with ME is brutal - Wade doesn't even have cable tv, because he's rather be doing sports than watching sports
0:49:00 Wade can see people out his window cycling, running, walking - that frustrates Wade because he can't understand the continuing education courses he should be taking for his license, but he can't understand it, it might as well be in a foreign language
0:50:00 So Wade lives with deep fatigue that leaves him horizontal most of the day - cognitive impairment that impacts thinking - and pain, but daily CBD oil helps with that, but he's still in pain every day - even though the most severe, lower back pain has been treated so that's not waking him in the night - but he still has joint pain, muscle pain, mysterious pain that feels like electrical shock or being poked with a needle
0:51:00 In November, during OT, Wade had a headache for 10 days straight - Wade's body also respsonds to temperature dysfunctionally - he can work up a sweat folding clothes
0:52:00 Wade's family knew he was tired, but they didn't understand the depth of his fatigue - Wade had a fitbit that tracked his activity, and the amount of sleep he required went up and up and up
0:53:00 The past month Wade has been averaging at least 12 hours a day of sleep - Wade lives alone so doesn't have caregivers, so he's forced to make meals and other activities to keep himself alive
0:54:00 Wade has to ration his house hold chores into small, short efforts - one solution Wade found is a robotic vacuum, so that has been helpful
0:55:00 In addition to CBD, Wade takes low dose naltrexone helps with pain mainly
0:56:00 Wade wasn't sure if the low dose naltrexone was helping until he missed a couple of doses, and his pain increased a lot - although he hasn't been depressed in 15 - 20 years, he's been given deloxitine (antidepressant) - Wade tried amytriptaline, but it gave him more brain fog, like a zombie
0:57:00 Wade is taking another medication (Prazosin) that helps with his postural orthostatic tachycardia - he asked his doctor for Mestinon, but the doctor wouldn't prescribe off-label
0:58:00 Prazosin can be used for nightmares, blood pressure and night sweats - for Wade, he needed it for the last 2 - Wade hasn't had night sweats since, so he's saving energy by not having to change his bed sheets daily
0:59:00 When you're 90% healthy, a 5% increase may not be too noticeable, but when you're only 10% healthy, a 5% increase is huge - what happens if the insurance company comes back and wants Wade to do 'exercise therapy' again? - Wade says he'll seek legal representation to have them charged with aggravated assault, a criminal offence
1:00:00 We've been talking for an hour - Wade's energy is dropping, his arms, legs, head feel heavy

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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 

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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.

Jim Gottstein: The Zyprexa Papers - How Big Pharma hid the harm its medication was causing people

Jim Gottstein: The Zyprexa Papers - How Big Pharma hid the harm its medication was causing people

March 16, 2020

Big pharmaceutical company Eli Lily was hiding the truth about the harms caused by their antipsychotic medication called Zyprexa -- until lawyer Jim Gottstein got a hold of the evidence and shared it with the New York Times.  You will not be surprised to hear that Eli Lily’s lawyers went after Jim hard with criminal charges to destroy his career, his livelihood and his freedom.

In my interview with Jim about his personal experience with the mental health system, and his legal career focused on mental health, I ask him why he’s exposing big pharma deceit now in his new book The Zyprexa Papers. 

Jim also tells about his personal experience with psychosis when he was over worked and under slept, and woke suddenly one night and thought he was being chased by the devil. Jim threw himself out a 2nd story window to escape. Fortunately, Jim is also skydiver, and knew how to roll his landing without injury. But it was Jim’s lived experience in the mental health system that prepared him for legal battles representing clients about mental health issues. Jim’s lived experience with the mental health system is priceless, adds value to a good legal defense, and cannot be taught in law school. 

Jim also tells the story of how he became the lawyer to expose Eli Lily’s lies about the safety of their Zyprexa medication and the impact that had on his life and career. Jim became a leader in the psychiatric survivor community, founding patient organizations including PsychRights.org - and providing his legal services pro bono to clients who didn’t want to be forced to take medications.

In The Zyprexa Papers, Jim gives a riveting first-hand account of what really happened, including new details about how a small group of psychiatric survivors spread the Zyprexa Papers on the Internet untraceably. All of this within a gripping, plain-language explanation of complex legal maneuvering and his battles on behalf of Bill Bigley, the psychiatric patient whose ordeal made possible the exposure of the Zyprexa Papers.

The Zyprexa Papers included hundreds of internal Eli Lilly documents and emails that showed company officials knew their best-selling drug was severely harming people while scarcely helping anyone. Release of the papers exposed the abuses of the drug industry besides the harm that Zyprexa was doing.

The series of front page stories in "The New York Times" could have saved tens of thousands of lives according to Jim's estimate.

The public benefits greatly from Jim’s efforts, not only because of the life-saving information he released, but also because he’s a courageous model for other people to follow in exposing the predatory practices in the pharmaceutical industry.

SHOW NOTES:

0:06:00 Jim was born in Anchorage Alaska in 1953 - it was a nice place to grow up - he was a pretty normal boy, he got to play little league, walk around town, ride bikes - when Jim was born Anchorage only had about 25,000 people, but now it is close to 400,000
0:07:00 Jim went to the University of Oregon to study business and to get a degree in finance, but one of the required courses was business law, and he didn't miss a question the entire term - he thought it may be a bette fit for him, so he took advanced business law and then decided to go to law school
0:08:00 Jim didn't do well enought in high school to get into any 'good' schools, and wanted to keep his options open by doing well in college - his 1st term was okay with a lot of Bs - Jim decided he had too much free time so increased his number of courses - the next term he got all As with one B
0:09:00 By over loading his courses, he graduated in 3 years - in his last term he needed 10 hours of anything to graduate, so he took 10 hours of teaching sky diving
0:10:00 Jim got his pilot's license when he was 17 - and then went to Harvard for law school
0:11:00 Jim's mom got him a job for lawyer Bob Goldberg, son of Justice Arthur Goldberg who was on the US Supreme Court - Bob had to move to Alaska to escape his father's shadow - Bob represented some of the Native groups
0:12:00 After a few years, Jim opened his own law practice and also decided to run for the State Senate, had traveled to Europe and Israel so was jet lagged and not getting enough sleep and Jim had a psychotic break - Jim had gone to his father's place to sleep but woke at 1am and thought the devil was coming for him - he was on the 2nd floor of the house and looked out the window
0:13:00 Jim thought he could jump far enough to miss the pavement and land on the grass - he jumped out the window and did a rolling landing parachute jump and ran across the street to the school parking lot but thought the devil was still chasing so kept looking over his shoulder - he was put in a straight jacket and hauled off to the Alasks Psychiatric Institute and they pumped him full of something that put him to sleep
0:14:00 Jim has always counted on his mind to accomplish what he set out to do and what was going on - so it was a shock that his mind could become completely unreliable - JIm remembers waking in the hospital and the male nurse asking Jim what day it was
0:15:00 Jim asked how long he'd been asleep - so the nurse noted that Jim wasn't oriented to time - so that was the start of the Alice in Wonderland experience of being in a psychiatric hospital - Jim was given Melaril , he told them he didn't want the psych med thorazine - thorazine was the first of the neuropleptic drugs for people with schizophrenia - it blocks about 80% of the dopamine, so they are basically chemical lobotomies
0:16:00 Jim knew he didn't want to have a 'committed involuntarily' label, so he signed himself in for treatment, but it was hardly voluntary - Jim's fiancee said he was still campaigning in the psych ward, handing out baseball caps, so Jim was pretty out of it - but was doing better and released after 30 days - Jim's not sure the medication did much for him
0:17:00 Jim's father connected Jim with a psychiatrist in New Rochelle, New York and he diagnosed Jim with biploar disorder - but the psych hospital had diagnosed him with atypical psychosis - Jim didn't find that psychiatrist very helpful - then Jim's mother connected him with another psychiatrist, Robert Alberts, who had been a Japanese prisoner of war - Jim says Robert was a wonderful person and told Jim that any one who misses enough sleep will become psychotic - and that Jim needed to manage that - Jim credits Robert with saving Jim from being made permanently mentally health by the mental health system because Jim had that he would never practice law again
0:18:00 When he told hospital staff he'd gone to Harvard law school, that confirmed to them Jim was delusional - Jim didn't accept their conclusion he'd never be able to practice law again, they'd call it 'denial' - Jim says 'denial' of being mental ill is one of the most positive things you can do - because the message of the mental health system is 'abandon all hope ye who enter here'
0:19:00 When in the hospital, they wanted to put Jim on lithium - he said he was a pilot and he couldn't fly if he was taking lithium, but they didn't care about that - so they creatine clearance test to his kidney function because lithium is hard on the liver and Jim's known a number of people killed by lithium - to do the test, they needed a kidnay biopsy, but the doctor couldn't find Jim's kidney's to do the test
0:20:00 Jim finds that work pressure with deadlines - and the habit is to always make the document better and file at the last minute - so Jim tries to file the day before so he doesn't have that sleep problem
0:21:00 Jim knows that if he's not getting enough sleep he can get into trouble, he knows the signs - the first sign is that Jim gets more witty with rejoinders, but nobogy notices except himself - then he'll have 'thought blocking' when he just stops for a few seconds when he's talking (his thoughts are blocked) - the next stage is that Jim thinks people are looking at him funny - he deals with that by telling himself that he's probably not acting funny
0:22:00 Then he'll also try to look at himself from 'above' to see if he's doing anything weird - at that point Jim may take a benzodiazipine (Halcyon) - just to break the cycle and get a nights sleep - it usually only takes 1 pill and then it'll be a year before he needs it again - benzos are highly addictive so its important not to take them daily
0:23:00 The FAA (Federal Aviation Administration) said Jim couldn't fly for 2 days after taking a benzo
0:24:00 Jim got involved in the legal side of mental health simultaneiously with his own psychotic break - in 1956 Congress enacted the Alaska Mental Health Enabling Act and gave a bunch of land for that purpose - later another Act redisgated that land for the state and said they'd maybe pay for it
0:25:00 Jim's mother was head of the Alaska Mental Health at the time and went to Congress and said you can't take this land, that's not legal - they said we don't care - so they sued them and won a billion dollar settlement
0:26:00 Jim found a couple of mental health 'consumer' groups - he was also on the Board of the Alaska Mental Health - then in 2002, Jim read Mad in America, Bad Science, Bad Medicine and the Enduring Mistreatment of the Mentally Ill by Robert Whittaker - to Jim it was a raodmap to challenging forced psychiatric drugging - JIm founded the Law Project for Psychiatric Rights (PsychRights.org) - and it challenged that and shock therapy
0:27:00 PsychRights also educates the public about these medications and shock therapy and their risks - Jim says we shouldn't call ECT (electro convulsive therapy) 'therapy' because it is not
0:28:00 The shock machines were invented in the 50s and have been modified since then - but before the FDA was responsible for regulating medical devices - but they didn't do that for 20 - 30 years - then in the last year they basically said that shock treatment is not harmful and we're not going to regulate them - Jim's says that is outrageous
0:29:00 Just shows how people in psychiatry just don't think - they're running electricity through the brain to cause a grand mal seizure, where neurologists do everything they can to prevent grand mal seizures - the convulsions were so intense people would break bones, bite through their tongue - now they anaesthetize them, but that requires more electricity to cause the convulsion
0:30:00 Dr Peter Breggin has written great psychiatry books - and he says electro shock is really a closed head injury - some people when they get a head injury, become euphoric for a while - but people have horrendous memory loss they don't get back - Jim thinks electro shock should be banned - its barbaric
0:31:00 A court in Conneticut has ordered a woman to be shocked against her will 500 times - that's the thing about psychiatry, 'if something doesn't work, do more of it' -
0:32:00 In November 2006 Jim received a call an expert witness in a massive lawsuit over side effects from the psych med Zyprexa - like diabetes and other metabolic problmes Eli Lily had not owned up to - he said he had documents showing Eli Lily knew from the beginning, hid it from the doctors and they were illegally marketing it to children and the elderly - but he was under a secrecy order - however if he was subpoanaed in another case - he wanted to know if Jim would do that - there's more to the story and that's what is book The Zyprexa Papers is about the New York Times published some articles
0:33:00 The expert witness had also been working with a writer from the New York Times, Alex Berenson - the expert witness gave the documents to Jim - there were a series of front page stories in the NYT and then Eli Lily came after Jim with criminal charges and to the Alaska Bar Association to try to get Jim disbarred
0:34:00 Zyprexa is a 2nd generation neuroleptic medication, also called antipsychotic, but that's just a marketing term - 'neuroleptic' means 'seize the brain' and that is what they do - in the 90s they started atypical neuroleptics which supposedly didn't have negative effects like tardive dyskinesia (results in involuntary, repetitive body movements, which may include grimacing, sticking out the tongue, or smacking the lips) - basically drug induced Parkinson's Disease
0:35:00 It blocks 70 - 90% of dopamine in the basal ganglia, same thing with Parkinson's patients - licking their lips, strange movements - and doctors interpret that in Zyprexa patients as mental illness, not as negative effects of Zyprexa - Eli Lily said this new generation of atypical meds didn't have tardive dyskenesia and that was a lie - another negative effect was neuroliptic malignant syndrome and it is often fatal, and Eli Lily lied about that too
0:36:00 Risperdal causes little boys to grow breasts, called gynecomastia - Seroquel causes problems, like elongates the heart rhythm and that can cause death - they are putting Veterans on Seroquel and another medication and they are dying in their sleep from this drug cocktail - they were prescribed originally for schizophrenia and the manic phase of bipolar disorder - cut in the US a doctor can prescribe any drug for any thing
0:37:00 Pharmaceuticals can only market a drug for a specific illness, but they do it anyway through various guises and artifices, like ghost writing articles, basically huge fraud perpetrated on the public - Dr David Eagleman was the expert witness and had these documents proving Eli Lily's lies and thought the public should know, but he was under a secrecy order
0:38:00 Dr Eagleman was looking for someone to subpeona him and Jim had just won a case for Faith Myers where they wanted to force her to take Zyprexa - Jim had a great witness, Dr Grace Jackson, and she analyzed the papers on which Zyprexa was given approval by the FDA, and she could see it caused diabetes just from that - but not just diabetes
0:39:00 People would gain a 100 pounds in a year - Dr Jackson found the studies were fraudulent - because the meds block dopamine, the first thing the brain does is try to pump out more dopamine - then after a few weeks it grows more dopamine receptors
0:40:00 So abrupt withdrawal causes some people to experience psychosis - but the doctor will say 'see what happens when you're not on medication' - but some people did quite well with the sudden withdrawal, but those people were thrown out of the study
0:41:00 About 2/3 of people in the study dropped out because of the negative effects - so Dr Jackson put all this in a report
0:42:00 Jim shared the documents with the NYT in 2006 and found someone to put them on the internet
0:43:00 Then a group called Psychiatric Survivors got involved - another group Mind Freedom.org with David Oakes, and they also helped get it out - Jim says it was amazing how Eli Lily could whip up Federal Judges to issues orders against Jim without him even being given notice
0:44:00 Psychiatric survivor Eric Weiland had posted them on his website and Eli Lily harassed and threatened him so he took them down - Pat Riser passed away a few years ago probably a result of psych drugging, he wrote the Eli Lilly and said 'geez, I saw these in the NYT and downloaded them and made a few CDs of them and sent them to newspapers and family and friends and went to...
0:45:00 ...handed them out in a shopping plaza parking lot - I didn't know they were illegal and sorry, I'm not going to be able to get them all back' - that's one of Jim's favorite vignettes - but Eli Lily had endless money to fight Jim
0:46:00 Jim testified and the judge ruled Jim conspired to steal the documents and a 'criminal act' and that set up Jim for criminal contempt charges
0:47:00 One of the clients in the case had a Gaurdian, and it was only the Gaurdian who could sign release papers so Jim could look at the client's medical records
0:48:00 Jim did get the medical records and the client had been drugged with Zyuprexa against his will - he was held down and injected with it
0:49:00 Eli Lily had portrayed themselves as the 'victim' in the lawsuit, so going after Jim, and the ensuing publicity, would've make Eli Lily look bad - they could have crushed Jim financially - so it was scary because the consequences could have been severe, including jail time
0:50:00 Zyprexa is still available and still forced - about 3 years ago Jim had financial troubles and had to give up most of the pro bono Pysch Rights work he'd been doing for 14 years and boost his law practice
0:51:00 After a year he had some clients but not a lot, so used his time to write the book - Jim would like the public to be aware because he thinks they'll be shocked by Jim's representation of Bill Bickley and to stop him from being drugged against his will
0:52:00 Jim represented him for 4 years, 10 trials and 5 trips to the Alaska Supreme Court - one of those decisions was an important precedent
0:53:00 Jim's says people are really taken with the 2 chapters on his defence of Bill Bickley and how the system is set up against patients, it is basically a kangaroo court - Bill's wife had divorced him and took custody of the 2 kids and sued him for child support which he couldn't afford - he had a good job as a heavy equipment operator and had a nervous breakdown - so Jim tries to convey how people's lives are ruined by what psychiatry does to them
0:54:00 In 2007, Dr Jackson testified that if Bill was continued to be drugged, he'd be dead within 5 years, and she was off by 6 months - Bill's Gaurdian didn't want Jim representing Bill, because they wanted him drugged - Jim won about half the cases for Bill - the Gaurdian told Jim that Bill didn't want Jim to represent him anymore, and Jim said that he'd never heard Bill say that
0:55:00 The judge asked Bill if he wanted Jim to represent him, and Bill said 'Jim knows a lot about me. And I'm the president." - the Gaurdian changed their tune after that, and said that Bill was not competent to make the decision - while Jim won half of Bill'ls cases, the Public Defendor who lost all but one of the cases - but the Alaska Supreme Court decided that Bill could not choose Jim as his lawyer, and that is a very frightening thing - so they got to drug him without constraint and he died within a couple of years
0:56:00 Jim pointed out to the Gaurdian that these drugs shorten lives, and the Gaurdian argued that quality of life is important - but they didn't care what Bill thought of his quality of life, and it was better without the drugs
0:57:00 One of the reasons Jim wrote the Zyprexa Papers is to bring people's attention - it is available on Amazon in Kindle or paperback
0:58:00 To connect with Jim, go to PsychRights.org and email him through that site
0:59:00 Jim talks to people all the time who had no idea this was going on - 'you can learn from your mistakes, but its better to learn from other people's mistakes' - hopefully he can prevent other people from having this sort of terrible thing happen to them
  Twitter: https://twitter.com/jimgottstein
  Connect with Jim Gottstein on Facebook: https://www.facebook.com/jim.gottstein
  http://psychrights.org/
http://gottsteinlaw.com/

Author of The Zyprexa Papers
https://www.amazon.com/dp/B0838YYYWV

 

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_close_up.png Remedies_Logo.jpg

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.

Lana Mills-Sowchuk: Paying for torture - how her father was the victim of secret CIA brainwashing experiments

Lana Mills-Sowchuk: Paying for torture - how her father was the victim of secret CIA brainwashing experiments

March 9, 2020

Lana’s father went to the hospital for asthma - but he was referred to another hospital - renowned Canadian psychiatric hospital, the Allan Memorial Institute in Montreal - where they proceeded to secretly conduct experiments on him and hundreds of others over many years.

I had a vague recollection of hearing about the secret CIA brain-washing experiments of the 50s and 60s, but recently I was made aware of a class action lawsuit started by the surviving victims and their families. 

It turns out that in 1977 it emerged that the CIA had been funding experiments in mind-control brainwashing as part of a project known as MK Ultra.

At the time, the CIA was scrambling to deepen its understanding of brainwashing, after a handful of Americans captured during the Korean war had publicly praised communism and denounced the US. 

This so-called ‘research’ was undertaken at more than 80 institutions, including colleges and universities, prisons, and hospitals.

One of the doctors the CIA connected with, was Montreal psychiatrist Ewen Cameron, who was trying to discover whether doctors could erase a person’s mind and instill new patterns of behaviour.

Some of the things he did to his patients, like Lana’s father, are so horrible and unbelievable that it sounds like the stuff of b movie nightmares.

Patients were subjected to high-voltage electroshock therapy several times a day, forced into drug-induced sleeps that could last months and injected with megadoses of LSD.

Other experiments included sensory deprivation, isolation, verbal and sexual abuse and other forms of torture.

After reducing them to a childlike state – at times stripping them of basic skills such as how to dress themselves or tie their shoes – Dr Cameron would attempt to reprogram them by bombarding them with recorded messages for up to 16 hours at a time. First came negative messages about their inadequacies, followed by positive ones, in some cases repeated up to half a million times.

Dr Cameron couldn’t get his patients to listen to them enough so he put speakers in football helmets and locked them on their heads. Reportedly, patients were going crazy banging their heads into walls trying to escape the constant messages. 

So what does Dr Cameron do with these non-compliant medical experiments? He put them in a drug induced coma and so he could play the tapes as long as he wished.

Lana tells how the man her father was - successful and upwardly mobile in his career - was destroyed by these secret experiments. The effects reverberate throughout his family to this day. Lana’s father could no longer work, and they lived in poverty as her mother struggled to put food on the table --- and then she was required to pay for her husband’s shock therapy - as Lana says, her mother was paying for father’s torture.

SHOW NOTES:

0:06:30 Lana grew up in a small town called Chamby, south of Montreal -- Lana's father was known as the crazy guy who rode his bike around town - and this was embarassing for her, she couldn't explain his behaviour to her friends because she didn't understand it herself
0:07:30 Lana's childhood was chaotic and she spent a lot of time with her god mother, her mother's sister- Lana lived with her every summer and helped raise Lana because her mother was always at the Allan Memorial Hospital in Montreal - so it was Aunt Isabel who took care of Lana when her mother couldn't because she was working to try to put food on the table
0:08:30 Lana's father couldn't work any more because he was not able to - the Allan Memorial Hospital is connected to the Royal Victoria Hospital, and is situated on top of Mount Royal - when Lana was in her late teens, she learned of the MKUltra brain washing experiments at Allan Memorial, but it was always hush-hush in the family - she didn't understand at the time, but would find out later
0:09:30 in 1952 Lana's father was attending the Royal Victoria asthma clinic - he was told that if he went to the Allan Memorial Hospital they would cure his asthma - and that's where he was experimented on - he never gave his consent to any of the treatments he endured
0:10:30 The CIA and the Canadian government were funding the Allan Memorial for brain washing experiments in the Cold War era of the 50s with the Soviets - they were trying to experimenting for treatments they could give to soldiers, so that if they were captured, there memories would have been wiped out so they were useless as informants - so they were experimenting on Lana's dad and hundreds of others
0:11:30 Lana got her father's medical records, and there are a whole bunch of blank consent forms with her father's signature, but didn't say what he was being treated for - they just made him sign all these blank consent forms - he was in and out of the Allan Memorial for years and years - one time he was put into an insulin coma for 36 days
0:12:30 While he was in the coma, they had a recording beside him playing constantly: "Your mother hates you. Your mother hates you. Your mother hates you." for 36 days - basically just torturing him - he also went through 54 high voltage shock treatments causing grand mal seizures - he was never the same after that
0:13:30 Lana was born in 1956, so did not know her father before he was experimented on - Lana has 1 sister, 4 years only - Lana's father had no judgment whatsoever
0:14:30 He would steal from the grocery store to feed people on welfare - but not to his family, who were starving - when Lana was a mother, her father his grand kids in a box and put it on top of the car and drove down the road - the kids thought it was great, but they could've been killed - he got Lana's 7 year old son drunk and he spent many days in the children's hospital
0:15:30 When Lana asked her father what he was thinking, he said he wanted someone to drink with - he was a big drinker, but was an Alcoholics Anonymous member by the end of his life - he also smoked a lot - Lana noticed that a lot of the Allan Memorial victims were heavy smokers
0:16:30 It was scary for Lana as a child to go to the Allan Memorial Hospital to visit her father - when she thinks back, it was like One Flew Over the Cuckoo's Nest going in there - her father did not like going into the Allan Memorial - he was either manic or depressed, not in between - other times he was catatonic and unresponsive
0:17:30 Lana was basically a latch key kid - sometimes he couldn't talk and would just stare into space - but other times he would do crazy things - so either manic or catatonic - one time they thought he was in a coma, they called the next door neighbour, a nurse to come over - she called an ambulance and got in the amublance with him - he was flatlining so she punched him in the head, and that woke him up
0:18:30 One time his car broke down in Montreal - he walked all the way home, picked up the tools he needed, and walked back to the car - it took him a couple of days
0:19:30 Lana's father would go to the Allan Memorial for their Day Clinic to regulate his medications - he was on all kinds of meds, lithium - one time when Lana was a teenager her father flushed all his medications down the toilet
0:20:30 The result was that he was high / manic all the time - sometimes her Mom would let the air out of his car tires in the morning so he couldn't go any where - later he lost his driver's license when his car broke down and since he had a case of beer in the car, he started drinking - he was arrested but represented himself in court, wearing his dirty old shorts and bare feet and no teeth - one time he was riding his bike past the dentist's office, stopped ond opened the mailbox - there was an envelope with a $10,000 cheque for the dentist
0:21:30 Her father went to the bank - back in those days they would take a picture of someone who was cashing cheques for large amounts - so he stood there in his dirty old t-shirt, not a tooth in his head because he lost them all from all the psych meds they put him on, proudly holding up the cheque - and the bank cashed it - when Lana's mother figured out what was happening, she went to the dentist to explain - Lana's mother went through hell trying to cover up and clean up because people didn't understand - Lana could have lost her children to social services when her father got her 8 year old son drunk - the doctor who was in emergency at the children's hospital
0:22:30 Lana told the ER doctor that her father was a patient of Dr Cameron at the Allan Memorial Hospital - the ER doctor looked at Lana and said "I understand. I'm not going to call social services"
0:23:30 In retrospect, Lana realizes the ER doctor knew what was happeing at the Allan Memorial - because Lana father couldn't work, they lived in poverty - before he was experimented on, her father was quickly working his way up the business ladder
0:24:30 Just after he went into the Allan Memorial the first time, her father had been given a promotion and relocated to Ottawa, but now couldn't handle working, and ended up with deep depression and back at the Allan Memorial - after that he had occasional odd jobs - Lana's mother worked a 4 hour shift at Bell Canada in Laval, but it took her about 2 hours to get there and back
0:25:30 in 1984, Lana told her Mom they should request her Dad's medical files - when the envelope arrived her Mom couldn't open it, she was too distraught - and Lana didn't look at them, she thought her Mom destroyed them
0:26:30 When Lana's Mom passed away and they were cleaning out her house, Lana found the envelope and her Mom had written Lana's name on it - her father had also passed away by that time - there was the Ex Gratia package (compensation without admission of wrongdoing) for the MKUltra brain washing victims of $100k - but since her father was dead when the Ex Gratia was offered to victims, even though her Mom applied, she was rejected - this is why Lana is fighting today, her Mom left that envelope so Lana could fight for justice
0:27:30 When Lana did open the envelope with her Dad's medical records, she found a lot of medical language that was hard to understand, so she put it back in the cupboard - then her friend phoned her about The Fifth Estate (investigative TV program) was doing an episode about the CIA brain washing in Montreal - Lana and her sister went to see Mr Stein, the lawyer pursuing justice for victims and he confirmed that since her Dad was dead, the family could not get compensation - Lana decided to write a book about her father's experience
0:28:30 Lana hired a writer and she learned more as they researched more - the writer got scared when it became apparent the CIA and Canadian government were involved in the brain washing and talked to a lawyer who said they needed to change the names so they didn't get sued - Lana was against changing their names and the writer refused to continue, so the file went back into the cupbaord again
0:29:30 Lana did not have that same fear - she wanted people to know what happened to her father, that people are held accountable, and that justice is served - so now Lana is part of a lawsuit and got to talk to other people in the same situation and what they find in the medical files
0:30:30 Now Lana is involved in a class action lawsuit headed by the Consumer Law Group - now they are waiting for a judge to appointed to their case - there is a great amount of documentation and recently a lot of documentaries, so people are learning what happened
0:31:30 Thay launched the class action lawsuit in January 2019 - once a judge is appointed, hopefully the case will be certified as a class action and will move forward - the statute of limitations does not apply because the experiments are 'torture'
0:32:30 In October, victims' families held a rally on Parliament Hill, with speeches and marched down to the US Embassy - there are 2 more rallies this April in Montreal
0:33:30 Lana has also filed a freedom of information request to get a copy of her father's medical record, even though she already had the copy her Mom received many years before - when she got a copy of the files, they were only half as much as her Mom had received - so now Lana has a hearing in April about the discrepancy
0:34:30 The Consumer Law Group will represent Lana at the hearing - the Consumer Law Group is working on a contingent fee basis, so it is not costing the patients families any lawyer fees up front - the lawyers will only get paid if they succeed in court
0:35:30 For the rally on Parliament Hill, Lana had to get permits, sign size approved, parking permit, etc and she did everything by the book - but when she arrives they tell her that her name is not in the system and refuse access
0:36:30 Their press release was supposed to be sent to all journalists, but mostly American journalists showed up, which seemed fishy - Lana called one of the Canadian journalists and he said he never received it
0:37:30 Lana is looking for 2 things from the lawsuit: for the truth to come out about the experiments and people to be held accountable, and also to be financially compensated - and an apology - Lana would also like to see a memorial plaque erected at the Allan Memorial Hospital
0:38:30 There are close to 400 members of the group that is suing - their class action lawsuit covers the period from 1953 to 1964 - that's when the funding was coming from the US
0:39:30 Lana's father's 'care' was transferred to the Douglas Hospital, another mental hospital outside of Montreal - but he was also under the care of another psychiatrist at the Montreal General hospital - Lana remembers being there with her father one time, the entrance had a revolving door and her father stayed in there going around and around - he told his family he didn't want to go for shock treatments - part of the purpose of the 'treatments' was to wipe out the memory
0:40:30 One time when her father came home from another stay at the Allan Memorial, her sister was very excited - when he arrived she ran up to the car and he looked at her, but didn't know who she was - at only 5 or 6 years old, Lana's sister couldn't understand what happened her father - that's what happened when they wiped out his memory
0:41:30 She expected him to pick her and throw her in the air like he always did - but he just had a blank face, no emotion, no recognition - the impact was reverberated throughout her family: embarassment, poverty, 2nd hand clothes, lots of potatoes
0:42:30 Lana does not know how her mother did it - the was before medicare, so every time Lana's father went in for shock treatment, she would have to pay the 'treatment' costs - essentially paying for your husband to be tortured - Lana doesn't know how her mom managed to put food on the table - one time Lana asked her mom why she doesn't just divorce her dad - her mom looked at her and said 'its not his fault'
0:43:30 Lana's mom lived another 17 years after Lana's father died - she enjoyed the last years of her own life with the stress of her husband - it was a relief in some sense
0:44:30 Lana worked for the Royal Bank of Canada in Montreal for 21 years and one day decided she wanted to take care of seniors - so she quit her job, even though she was only 1 year away from a pension
0:45:30 Lana started her own business of taking care of seniors and has been doing it for 23 years - she has 4 employees and they give their senior clients the love and care they need - Lana has a lot of clients with Alzheimer's, but dealing with her dad for all those years prepared her well
0:46:30 Lana's dad played the guitar, mouth organ, and could play the piano cross handed - but he would play late into the night, and Lana was trying to sleep for school - she hated it and country music, but now she has her dad's (his name is Iver) song book and it means a lot to her - and those songs help her connect with her senior clients
0:47:30 Lana's sister went to McGill university and is now a teacher - Lana doesn't know how, but her mother found money for the tuition from an obscure bursary for descendants of Scottish people and other grants
0:48:30 Lana went to business college - Lana hoped secret experiments won't happen again in teh future, but she's not hopeful based on what she sees - there is secret stuff going on, but at least by bringing awareness to the topic - when Lana's son was born, the staff wanted to do experiments on him, for SIDS (Sudden Infant Death Syndrome), but Lana did not agree, especially after what she went through with her dad
0:49:30 Lana does not like going to doctors - she will google her symptoms to diagnose herself and then goes to her doctor for treatment - Lana thinks that seniors in nursing homes are over medicated
0:50:30 Lana had a client that was very compulsive, the doctor put him on an anti-psychotic and that didn't work, so the doctor tried medical marijuana and that leveled the patient out and the family was so happy - but what Lana sees in nursing homes is drug them, zonk them, make them compliant
0:51:30 Lana has always been a fighter for what's right, but this fight for justice for her dad is the biggest fight - Lana got a tattoo to honour her parents, it is over her heart, so she has them in her heart
0:52:30 It is hard to fathom how the government and doctors and the health care system betrayed its citizens - Lana says Dr Cameron's face is so publicized now, he's getting recogniable on social media - to find out more about the lawsuit for affected families, Lana says people can contact the Consumer Law Group - or SAAGA (survivors allied against government abuse) online and hook up with the lead plaintiff
0:53:30 Lana says she surprised she didn't cry during the interview, she has before - she thinks she must be getting stronger

Consumer Law Group for class action lawsuit.

Survivors Allied Against Government Abuse (SAAGA) for support and connection.

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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_close_up.png Remedies_Logo.jpg

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.

Teri McGrath interview: Nurse & Health Educator says: Make reporting of medical errors mandatory

Teri McGrath interview: Nurse & Health Educator says: Make reporting of medical errors mandatory

March 2, 2020

Teri McGrath, nurse and health educator, is very familiar with the paternalistic and misogynistic medical culture - in fact, her own physical symptoms were repeatedly dismissed by doctors until they discovered Teri was hyperthyroid. Turns out Teri’s symptoms weren’t ‘all in her pretty little head’, but actually stemming from an overactive thyroid that would have eventually killed her.

Today, Teri is taking on the behemoth medical system that routinely hides or denies medical harm and death, and the Goliath legal-medico system that effectively makes seeking compensation by medical error victims a traumatizing experience, financially draining, and an exercise in futility.

Canadian doctors have finagled themselves a pretty sweet deal: they have manipulated the political, legal and insurance systems so that when medical malpractice occurs, tax payers pay for the doctors high price lawyers. That is millions and millions of dollars each year coming out of tax payers pockets.  The medical error victims - many of them too injured to work - are left to their own devices with no financial support for legal costs.

And what do these high price lawyers do? They fight the injured victims every step of the way, making it as hard - and expensive - and as long - as possible. The lawyers tactic is to bankrupt the injured victim before the case goes to court, or delay the court case in hopes the patient dies in the interim, thereby immediately ending the lawsuit.

No wonder fewer and fewer people trust their doctor. Or their politicians. They have set up the system so that medically injured patients are also emotionally traumatized and financially bankrupt. It is not by accident -- it is intentional and tactical to inflict more harm.

So Teri is on a mission to do 2 things:  Make reporting of medical errors mandatory -- and increase access to compensation for medical error victims.

SHOW NOTES:

0:06:00 Teri grew up in a small town called Espanola in Ontario, Canada -- Teri went to boarding school and then to studying nursing at college -- the boarding school was run by the nuns and Teri had an idealistic view of the world
0:07:00 When Teri was a child, her father would gut a turkey and tell her about the internal body parts and Teri set a goal of becoming an operating room nurse - but with the idealistic rhetoric in boarding school, her goal was to help people and she's still helping people to this day - Teri ended up teaching nursing in Saskathewan and then found out about 'outpost nursing'
0:08:00 Teri started outpost nursing on a small Aboriginal Reserve north of Saskatoon - then moved to a small town to work as a health educator - Teri saw how poor healthcare was for Aboriginal women and decided to do something about it - she went to a conference in Pheonix called 'Wellness and Women' and Teri wanted to do a similar conference in Canada and it took off - she credits that conference to a number of woman who are now Chiefs on their Reserves and educated about health
0:09:00 The conference covered a wide range of health issues, and Teri says it was the most profound experience she's had
0:10:00 In the 1980s, Teri was having a problem with depression and weakness but couldn't convince her doctor that something was wrong - she was referred to a psychiatrist, but it wasn't until her heart rate went up to 150 in a resting state that they took Teri seriously and finally got treatment - but she didn't file any complaint because in those days it wasn't done and people didn't know how to file a complaint - not like today with the internet and easy access to info
0:11:00 Misogyny played a big part in how Teri was treated at that time - it is the medical culture and Teri could feel the disregard the doctor had for her - Teri felt that disregard again recently when she asked for another doctor, and the current one asked if she wanted to quit treatment, which would have been the worse thing to do
0:12:00 The sexism against women is still in the medical system - while Teri's fatigue symptom was vague, her extreme weakness and crying at the drop of a hat
0:13:00 Teri couldn't walk any distance without having to stop and lean against something to hold her up - it was really bad, but the doctor didn't think it was anything to be concerned about - turns out Teri had hyper thyroidism, which people can die from, and they did before thyroid meds - people becae totally bed ridden, hair falling out, too weak to move, no appetite and a very fast heart rate
0:14:00 Teri got 'zapped', the isotope treatment destroyed her thyroid and she's been on thyroid meds since
0:15:00 Since 1986, Teri has worked as a health educator on Reserves - she moved to Penticton and in 2014 she fell off a ladder
0:16:00 Teri had a major hip fracture and ended up in a hospital room with 2 men and 1 woman with advanced dementia - being raised a Catholic, it did not sit well with Teri to be in the same room as 2 men and was very upset about it - she complained to the Health Authority but they blew her off - she took her complaint to the review board - they told the hospital they had broken the rules and got a slap on the hand
0:17:00 Meanwhile, Teri had contacted the local press and got to know one of the reporters, Susan MacGyver, and she wrote a book - Susan had been on the faculty of medicine at the University of Toronto, U of British Columbia, Guelph U - she had also been coroner, but retired and was writing articles for the local paper - Teri read Susan's book "After the Error" - half the book is stories written by patients or their families about medical errors in hospitals
0:18:00 One of the stories was about a toddler admitted to a hospital - the mother went home to care for her other kids and returned to the hospital a few hours later - she found the IV cord wrapped around his neck and he was dead - Teri was shocked and started researching, that was in 2015
0:19:00 Teri started a federal and provincial petition about medical errors - the federal petition was very long and involved, so for the provincial petition, Teri just took 3 major points to use
0:20:00 Teri believes the petition is the court of public opinion and speaks truth to power - the provincial petition says that 1 in 18 patients will experience medical harm - few patients who experience medical harm get compensation for their suffering - and there are no mandatory rules for reporting medical error to improve safety - Teri wants mandatory reporting of medical error
0:21:00 And an administrative compensation system in place for preventable medical errors, and that the reporting system should be a 'no fault' model - currently BC has laws that prohibit doctors from testifying in medical malpractice lawsuits - there is also a law that physicians and nurses have a duty to report medical errors
0:22:00 The risk analytica report found 28,000 people die each year from medical error in Canada, the 3rd leading cause of death - so Teri put in a freedom of information request to Health Canada and they told Teri that only 154 people had died of medical error in 2017 - Teri realized lots were going unreported
0:23:00 What Teri finds very interesting is that the Canadian Medical Protective Association (CMPA) - our tax dollars are given to the CMPA as a subsidy - but the CMPA, a non profit, has over $4 billion in assets - and was given $520 million in tax dollars to hire top tier lawyers to fight patients - the lawyers give misinformation, change dates, leave info out - this has been going on since 1901
0:24:00 No other country has this system - but New Zealand in 1974 started no fault compensation for victims of medical error and only 7 countries are doing it now - this will increase openness and transparency, and learn from errors and apply to policies and medical education so they don't happen again
0:25:00 Today there are laws that prevent people from compensation - the CMPA protects doctors at all costs, whether they are guilty or not - in Teri's opinion because 28,000 people died in one year, and 1 in 18 are harmed, they have to stay in the hospital and they take up time and space - so Teri is on a mission to do something about that
0:26:00 So tax payers fund the CMPA to defend doctors who have harmed tax payers - the lawyers play dirty, holding back evidence, extending the proceedings to drive up the patient's legal costs - or extend the case in hopes the patient dies and the case disappears
0:27:00 Court cases can take 8 - 10 years and it is hell on the family because they are re-living it over and over again, they are re-traumatized - most people just want answers - stats show only 2% of patients get a result through court cases
0:28:00 They either drop out because they can't afford it - and injury lawyers won't touch a case unless they anticipate a settlement of at least $250k
0:29:00 There was a case in Newfoundland where a baby was born and the doctor failed to give it medication and now the child has cerebral palsy and can't feed itself - the lawyer defending the doctor blamed the baby - another case of a woman who was a runner and had an injury and had a minor surgery - 7 surgeries later her leg was amputated
0:30:00 A law professor has said the system is 'perverse' - in 1990 a report said 'no fault medical error' is a better system, levels the playing field to make it fair, but nothing has been followed through - becaue the CMPA is extremely powerful and have offices in every city employing top tier lawyers
0:31:00 So the lawyers and doctors are tight, belong to the same country clubs - even judges are part of the problem, refusing to consider evidence
0:32:00 People report being more harmed and traumatized by how the hospital responded to the error, then the medical error itself - called 'institutional betrayal' and there is a study at the University of Regina - that is why Teri went to the press
0:33:00 The CMPA way back in 1911 reported that they had 'struck terror' into the hearts of patients complaining - dozens and dozens of cases have been strangled - that is the strength of the CMPA
0:34:00 Doctors must join the CMPA - and the CMPA have convinced the insurance companies to eliminate medical liability in their insurance policies, so the doctors have to go to the CMPA to get liability insurance
0:35:00 The Gough Report, by Judge Gough, had insurance companies on his committee and doctors that were working in the office of the CMPA - the Report recommends that the government not look at no fault compensation system
0:36:00 Teri says all the facts are online, that's why they can't come after her - she half expects to get a 'cease and desist' letter - for the BC petition, 2 Members of Legislative Assembly (MLAs) presented it to the legislature and Teri is hoping for 3 more
0:37:00 The BC government paid the fossil fuel industry subsidies worth $830 million last year - the fossil fuels companies owe the BC govt $3.1 billion in royalties, but they've never paid - and those royalties are marked for health care and education
0:38:00 Fossil fuels contaminte air and water and make us sick - CMPA defends incompetent doctors, harming more people, who need more hospital care - its all connected
0:39:00 Teri say a documentary about health care workers high on drugs while on duty, and that may be contributing to medical error rates - Teri thinks they are self-medicating because the stress of the job is so bad, including bullying - the top of the system has to fix it, but they are only putting on band aids
0:40:00 Scott says he doesn't understand why health care workers are working such crazy long shifts - we wouldn't let people making widgets in a factory work long hours because they'd be making so many mistakes - Teri says some of the workers want those long shifts so they can spend more time with their family
0:41:00 Teri says back in the day, workers were told what and how long to work - she says today there is too much compromise between management and workers - Teri thinks management must limit shifts to 8 hours - overwork is where a lot of the medical errors come from, and short tempers lead to medical abuse - Teri says today health care workers get too much theory and not enough practice
0:42:00 When they start working they are scared and don't know what they are doing because they only have theory - so the education has to be looked at and improved on - and workers are not clear on their duties any more
0:43:00 Teri says patients are striking out at health care workers who are over compensating for the stress - one over compensating defense mecahnism is arrogance and that results in a condescending attitude
0:44:00 Teri says the system needs to be revamped from the top and bottom - they need to listen to patients - Teri found that every patient organization committee she's been on is over loaded with health care practitioners who didn't really regard the patients experience at all
0:45:00 Teri says she felt like a token - there was an independent BC patient organization, but when the funding stopped, the govt took the patients and put them into a govt program, so they were policing themselves - prior to that it was the patients voices and needs that were listened to, and its not that way now
0:46:00 Re the petitions, Scott says mandatory reporting of medical errors should have lots of support, and a no-fault model sounds like a good thing - Teri says it must be adopted across the country because it it is just one province, the politicians fear the doctors will leave and go to another province
0:47:00 Teri is hoping the BC govt will champion this approach - Teri thought it was great that Patients for Patient Safety Canada was holding round table meetings with the provincial Ministers of Health - but there has to be support across the country to remove the power of the CMPA
0:48:00 The CMPA says it is the provincial medical associations that set bargain with the provincial Health Ministers, so not within CMPAs power - Teri gets angry when the provinces say they need more health care money, she says they don't need more money, they need to spend it wiser
0:49:00 Teri is looking for people to share their stories around medical error - Teri can be reached at safept.care@shaw.ca

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.

Scott_close_up.png Remedies_Logo.jpg

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 

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.

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

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.

 

  

Joan McParland interview: “I have been conned” - When sick patients are sold psychological snake oil

Joan McParland interview: “I have been conned” - When sick patients are sold psychological snake oil

February 24, 2020

When people are very sick and suffering, especially for months and years, they are desperate to try almost anything to have even a little improvement in their quality of life. 

This makes patients susceptible to shysters preying on desperation. Like the snake oil salesman of yesteryear, today we have their modern incantations and must contend with their psychological snake oil.

For a short while, Joan McParland metaphorically drank the snake oil laced Kool-Aid.

Joan had been very sick and bedbound for years with the neuroimmune illness myalgic encephalomyelitis - which literally means ‘inflammation of the brain and spinal cord’ - Joan was desperate to try anything so she could be well enough to the healthy Mom she used to be for her son, and return to the work she loved.

Joan paid big money to participate in the ‘lightning process’, a program that professes to treat all sorts of chronic symptoms in just 3 days. Evidently this is not some benign distraction, it has been reported that a Norwegian teen tried to committ suicide after failling to improve from the lightning process.

In the 3 day program, Joan and the other participants were told not to share anything about how the lightning process works with anyone else, or talk to each other about the lightning process, and to only talk about themselves in positive, healthy language and to tell people they were cured --- some people even had to sign contracts with those constraints.

But Joan is not one to be complicit in promoting self-blaming brainwashing and is telling the truth about what secretly happens in the costly lightning process. 

It works basically like this: you stand on a piece of paper that has ‘stop - I have a choice’ written on it. Then you say that aloud.

Two arrows point to your choices.

One arrow points to a piece of paper that has ‘the pit’ written on it. This represents your symptoms and illness.

The other arrow points to a piece of paper that has ‘the life I want to lead’ written on it.

You choose which piece of paper you want to stand on and say that aloud.

That’s it -- you do that repeatedly and it will cure you.

Doing a little bit of googling and it turns out both the British Advertising Standards and the Nordic Consumer Ombudsman have ruled against the lighting process for making false claims on its website. 

It has been described as "quackery backed by pseudoscientific theory", and as a costly pyramid scheme since people who train in the process frequently go on to become paid practitioners themselves.

What makes it really dangerous, is that dubious researchers have subjected children to the snake oil. It is unclear how the research ethics board allowed children to become guinea pigs, since the program was described as ‘"like CBT, but with bullying”.

When Joan continued to be very sick, she realized she’d been conned. She told family and friends she was cured, but in reality she was just as sick and disabled as before. Joan felt used and abused -- and also ashamed and embarrassed for being so gullible to pay large sums for something so obviously rooted in magical thinking and profit making off the sick. 

But Joan’s shame quickly turned to anger when she thought about how many other sick and disabled people were being scammed out of their money, and made to feel it was their fault if they weren’t cured -- and so Joan has set out to tell the truth so other patients don’t fall for the same scam.

 

SHOW NOTES:

0:08:00 Joan was an only child and born in Northern Ireland, near the border - a happy childhood with no trauma -- hated school initially but loved it by the time she finished - went to college, took a year off, and returned to college to study something she really wanted to: cookery and commercial course
0:09:00 The 2 courses compelemented one another and Joan got a job organizing school meals, so she had some hands on work creating meals, and admin work organizing supplies, making menus, working out nurtitional values, etc - so brain work and book work and hands on, which she loved as well - it was idyllic and only 10 minute drive from home - her son attended the same school - they got all of July and August off each year
0:10:00 Joan married her first love, her love at first sight, when she was 20 - they camped, caravan, and biking - Joan often had a car full of kids from school because they would end up at her house - Joan was asked by a woman to look after her son on a long term basis, so the 2 boys became like brothers - it was a good life, really good - and then 'boom'
0:11:00 Boom' happened October 13th 1999, she got sick overnight - looking back now that Joan knows what ME is (myalgic encephalomyelitis), there was a time in France when her brain 'blipped' and she thought she was going to faint and scared the life of her for a couple of hours, 'what the hell was that' - that was summer 1999, and about 6 weeks later, 'boom'
0:12:00 Working with kids in school she would pick up a tummy bug / gastroenteritis - on waking October 13th, Joan thought she had a tummy bug or food poisoining - she tried to get out of bed but couldn't walk, the room was spinning, her brain was spinning inside her head, the nausea was horrific, and Joan had to crawl on her hands and knees to the bathroom - desperately wanting to vomit and not able to
0:13:00 She called head office to say she was sick and would be off work one or two days at the most - 2 days passed, a week passed, 2 weeks passed and Joan realized something was not right - Joan's Mom was staying with her to take care of her - her GP made a house call and diagnosed Joan with viral labyrinthitis (inner ear infection) as causing the dizziness and nausea
0:14:00 Joan was so ill, she couldn't explain her symptoms - she didn't realize she was sicker when the curtains were open or when her mother was vacuuming - in the same way a year later, when she couldn't associate pushing herself physically that was making her sicker
0:15:00 For 11 months, Joan was carried to the bathroom, looked like she was going to die, felt like she was going to die, lost about 2 stones (28 pouinds) in weight because she couldn't eat - her husband carried her to the car and drove her to the doctor and he injected Joan with cyclizine (nausea medication) - she was injected for months and months - one day another doctor said Joan didn't have to come in for injections, she could get it in tablet form - Joan wish she'd known that because it was crucifying her to travel to and fro the doctors - one day Joan felt a wee bit better
0:16:00 Joan thought she was recovering - she got a wee bit better over the next few months, but the dizziness and nausea never left, but her energy came back a bit - Joan was afraid of losing her job so went back to work about a year after she got sick - but Joan wasn't really well enough to work
0:17:00 Joan would last until about 1pm and then she'd have to come home and go to bed until the next morning - she did this for months, never associating that pushing herself to work was making her sick, that's a concept she'd never heard of - so Joan was in a cycle of 'work and collapse' - she ended up back in bed for a few months and tried to work again - this went on for about 2 years - a friend at work suggested Joan try yoga, Joan said that was a good idea, she needed more exercise (laughter)
0:18:00 Joan went to the yoga class and can remember thinking 'I can hardly lift my leg, what's wrong?' --The next morning she went to work and 10 minutes after getting to work she fell to the floor, and spent the next 7 years in bed - the 2 years of pushing and crashing cost Joan the next 7 years, a very steep price
0:19:00 Joan can remember her doctor standing at the foot of her bed saying 'I hope and pray we're not dealing with severe ME' - but he never said anything about the importance of rest - she said to him one day she couldn't get out of bed, but she wanted to, she wanted to spend time with her son Stephen, she wanted to work - he casually said 'stay in bed if that helps' - Joan says that if the doctor had of said 'Joan, if you don't rest now, this could be the rest of your life' - but he didn't know to say that, so she doesn't blame him, he was very good to Joan - he started sending Joan to specialists, like cardiology, gastroenterology, etc
0:20:00 The specialists were all coming up with different diagnosis, like menopause - Joan says its the strangest menopause she ever heard that would put you in bed for a year - Joan's husband said we're running out of options with the National Health Service (NHS), maybe they should try a private clinic and pay out of pocket - one gastroenterologist said to Joan's husband, 'take that woman to a psychiatrist' - that was the only day in 20 years that he doubted Joan, he said 'Joan, there is something I have to tell you, these doctors can't all be wrong' - that nearly broke Joan's heart, it felt like betrayal
0:21:00 Fortunately her husband knew her well enough to believe her, and now he backs ME advocacy as much as Joan does - right now he's building some stuff for Joan's ME presentation next week - she doens't know where she'd be without him, she realizes she's very lucky - their son was 12 years old when Joan got sick, so he's been to all the ME conferences Joan has attended - without her family she could not accomplish her ME advocacy, because living with ME is horrific
0:22:00 At one point Joan doubted her own sanity because all these doctors were telling her there was nothing wrong with her - so she went to a psychiatrist and he told her he would teach her to relax and not think about her bodily sensations so much (laughs), so I didn't go back to him either - Joan says 'to be honest, it was the Lightning Process that gave her mojo, she came out of that not to be empowered to be well, but to be empowered to do something about the ME medical situation'
0:23:00 In about 2007 Joan tried the Lightning Process (LP) - Joan had a relative who is a mental health nurse, a lovely lade, and she sent Joan a newspaper clipping of this wonderful new treatment for ME
0:24:00 The article said that LP had helped people get out of wheelchairs - there was an organization called the Northern Ireland ME Association and they did a newsletter and including an article about a lady bouncing out of her wheelchair in 3 days - at first Joan scoffed, but then she thought 'what if it helps?' - she was so sick couldn't not try it
0:25:00 The LP person was to phone patients to determine if they were suitable for the program, so what that means is 'are you stupid?' (laughs) - he would talk about the ME symptoms like a person with ME, he talked about the dizziness and nausea and exhaustion, etc - Joan really beleived he knew what he was talking about - he (the LP person) then started asking Joan questions like 'how much do you want to be well, how much do you want it, are you willing to invest 3 days of your life now to get well' - questions you are never going to say 'no' to
0:26:00 He was obviously an insurance salesman at some stage in his life because he could have sold anything to you - Joan says she's not stupid, but she was desperate, and he was preying on that - he said Joan needed to make it a life changing holiday - she went and stayed in a hotel about an hour and half from her home - Joan's mom came with her because Joan was too sick to be on her own
0:27:00 So they stayed in the hotel for 3 nights and had to take a taxi about 5 minutes away to a house he rented for the LP - it was supposed to be for 3 days, but it was actually only from 10am to 2pm on 2 days, and the 3rd it finished at noon, so 10 hours in total - for lunch they were served a cup of tea and a biscuit....for 880 pounds (about $1150 USD)
0:28:00 They were told not to talk to each other about what happened in the room, don't discuss it - Joan got to know 1 of the other 3 people, Paula, and they became friends over time, and great friends today
0:29:00 About a year later Paula told Joan it was her 3rd time doing LP and her husband paid the LP person to come over for personal 'training' at 1,000 - 2,000 pounds, they were so desperate - it took Paula a year to tell Joan because she was so ashamed she'd been conned repeatedly - the LP person told Joan to only ever talk in positive terms and words
0:30:00 So Joan and Paula would have these stupid conversations only in positive terms, partially out of fear, partially because they had paid so much money - but as time went on, their health went down, and they had to admit to each other that LP is a load of crap, just mind games - it mostly just LP person talking
0:31:00 He would show things like optical illusions and it all made sense the way he said it - on the 2nd day he showed them how to do LP - that's when they started to learn affirmations - he instructed them to think of a day in the past they were happy, and bring that emotion into the present - it was like 'neuro linguistic programming' - its just brainwashing
0:32:00 Joan would go back to her hotel pumped with adrenaline - she had pieces of paper she was to put on the floor and practice LP all night - her Mom watched her standing on paper circles talking like she was cured - Joan was instructed to only speak in positive terms, so she called her husband and told him she was cured (laughs) - one of the pieces of paper says 'stop - you have a choice' - another piece of paper said 'the pit of ME' and another said 'life I want to lead', and Joan was instructed to choose one to stand on
0:33:00 Of course, people choose 'life' and stand on that piece of paper - you become your own coach - and you have to do all the movements (Joan thrusts her fist in the air in victory) and say 'I choose the life I love' (laughs)
0:34:00 When your experience symptoms, Joan was instructed to put her hands in front of her and say 'stop' - nobody was going to choose 'the pit of ME'
0:35:00 It would be ridiculous to say to someone they could be cured of cancer by standing on a piece of paper and shouting 'stop' - but because medicine has erroneously said ME is psychological, they can get away with it - they are playing on the fact there is no biomarker for ME yet, so when you can't prove a disease, it can be called anything
0:36:00 Of the 3 people who did LP with Joan, none of them recovered - one of them had ME, another depression, and another fibromyalgia - Joan practiced the self-affirmations daily and almost became evangelical about it
0:37:00 If any one had of said to Joan at the time that LP was a load of crap, she would have argued that it wasn't - the LP person phoned and asked the patients if they would go on tv or radio to tell about their experience - if he had of phoned Joan a week earlier then he did, she would've gone on tv to say how great LP was, he was like the Messiah to Joan - Joan was so desperate to better after years of being sick, she believed it
0:38:00 Joan stopped believing when her ME symtpoms started to creep back - in her head she was screaming 'no' - she did the LP and was torturing herself - but a small voice in her head kept saying LP was rubbish - so her mind was bouncing between reality and LP
0:39:00 Eventually Joan ended up bed bound again - and feeling psycholigically disturbed about how foolish she'd been, having been taken in, and telling everybody she was cured - Joan felt stupid and used and abused
0:40:00 Joan felt ashamed for being so stupid - so psychologically Joan ended up in a worse place
0:41:00 When Joan's friend finally disclosed that she was still sick, Joan was shocked and at the same time understood her desperation - since none of the 4 people recovered, Joan knew she would never do LP again and the reality "I've just been conned" started to set in - Joan only has about 20-30% of ability compared to her full health - if she's not horizontal most of the day, nothing gets accomplished - it was psychologically tough because LP felt like the last hope
0:42:00 Joan had lots of tears, heartbreak, disappointment - it was a horrible experience - Joan didn't go into depression, it was great sadness - then that sadness turned to anger, 'I've got to do something about this' - people can not go on abusing and make fools of patients - a match was lit inside Joan to do something, she didn't know yet what it was
0:43:00 The support of her husband and wanting to support her son motivated Joan - she doesn't know how people with severe ME survice on their own without some family support
0:44:00 The one thing that kept Joan sane during the years she was very sick, was a tree outside her window and she watched the seasons change - there were days when she felt like she was going to die, couldn't get out of bed, and sometimes she just counted the leaves on the tree because she couldn't read or watch tv - anything to take her mind off the suffering because she couldn't physically leave the bed - everytime her son walked down the hall, Joan thought 'better me, than him'.
0:45:00 Joan couldn't make sense of the written word due to cognitive impairment - it was like a switch in here brain was turned off - Joan can remember looking at a 4 week menu plan for work and not being able to come up with one meal plan
0:46:00 Joan wondered what was happening to her brain, she couldn't think straight or get her thoughts into order - affecting her concentration, memory, ability to focus - when she could tolerate tv, she couldn't follow the story line
0:47:00 Joan would try to fake that she knew what the tv show was about - if the radio is on and her husband says something to her, it all gets jumbled - her brain can't filter out what she doesn't want to focus on - when Joan is feeling 'well' she can go out for a meal as along as there is no background music and only 1 or 2 other people there
0:48:00 If people talk across each other, Joan is cognitively impacted and she doesn't have a clue what people are talking about - Joan has used her anger toward ME advocacy - Joan didn't even have a laptop until about 10 years into being sick, she had no contact with the outside world - she had to self learn the laptop when she got it
0:49:00 Joan and her husband where scheming how to doing something about ME - they heard about a ME support group about 20 miles away...that was a whole different experience - Joan could barely sit up at that point but the group was talking about the activities they were planning for the weekend - Joan thought she must've been in the wrong support group because she can't do any of those things - she was despondent
0:50:00 But Joan and her husband decided to start their own ME support group - Joan contacted the local newspaper and they did an article about Joan and ME - Joan booked a room at a hotel for the meeting - Joan didn't know what to expect, or if any one would actually show up...then they started coming and she thought they'd never stop coming through the door - Joan wasn't a public speaker or know what direction the group would go, they hadn't even paid for the room, but everyone put in 1 pound to pay for it
0:51:00 So Joan just spoke from her heart, about what had happened to her - she said she needed help and they formed a committee that night - and the next thing she knows they're organizing conferences and bringing over researchers from Harvard, Stanford - it was like the stars lined up and everything fell into place with very little effort, but sometimes with a massive effort - sometimes she felt like running away from it but then an opportunity awareness and educatin would come and she could not let it pass - and the group grew and grew
0:52:00 Joan says the only thing she did was to tell the truth, she's not a doctor or scientist, she's just one person who got ME and is not going to leave this world quietly - doors started opening
0:53:00 This year in particular, they've been asked to do a presentation in the GPs surgery (clinic), that is massive - last week Joan was asked to talk to the European Health Connection - Joan realizes instead of her having to ask people to learn and hear about ME, now they're coming to Joan's group
0:54:00 LP didn't take off too much in Northern Ireland, or people are too ashamed to admit it, which Joan can understand - there is zero ME research in North Ireland - advocates had been trying for years to get services but hadn't got any where
0:55:00 One day Joan got a call from Horace Reid (SPELLING??) from the Northern Ireland ME Association to tell her she was doing a great job and keep up the good work, and that was a real boost for Joan - Horace ended up joining Joan's group's committee and has been a great friend, advisor, and advocate
0:56:00 Soon Joan and other advocates met with Health and Social Care Board - Joan was frightened and just listened - they kept meeting with them but nothing happened - they then asked the Patient Client Council to help them
0:57:00 They are supposed to represent the patient voice - they started to come to the meetings with the Board and hold them more accountable - that's when people started to listen and things started to change, that was in 2012 -- in 2018, the Chief Medical Officer for Northern Ireland opened the conference and it was announced a new ME Clinical Lead for NI was being interviewed for the new ME clinic - but the clinic hasn't opened yet, it it was left to patients it would've been started by now
0:58:00 They are just waiting for the press release to announce the new clinic - it is exciting but the down side is only it is only a part time position and no supports for kids, so a long way to go yet - doctors are now referring them to the support group because there is no other place to refer, and they will get the best support from other patients
0:59:00 Joan has to spend a lot of time horizontal, drapes and windows closed, phone off, don't any body think of coming into the room, so not just lay down, but complete shut down - Joan has tried antivirals and antiretrovirals (ARVs) - another friend started ARVs first and she got good results, not cured, but she was severe and now she's at moderate / severe
1:00:00 So it improved her health one level and she's holding that - ARVs are expensive, maybe about 300 pounds a month - Joan tried ARVs but started to feel worse
1:01:00 Joan persisted taking them until one day she was having trouble breathing so stopped them, but tried them again about 6 months later but had the same reaction - but that didn't bother her as much as the LP because it didn't mess with her head
1:02:00 Joan's illness impacted her son - he was just moving up from primary to high school when Joan got sick and it affected him
1:03:00 Knowing how ME was impacting her son, motivated Joan to fight on - it made Joan very angry she couldn't protect her child from pain, that's a big reason she got into advocacy - no kid needs to see there mother in bed like a vegetable
1:04:00 Joan doesn't know how parents with kids with ME cope - if Joan's son had ME, she would've murdered somebody in health service by now
1:05:00 Joan's support group has parents of children with ME, but they have to keep a low profile for fear of having health services accuse them of 'fabricating illness' in their child - they have to play along with mental health services, not cause a fuss, don't fight too hard - Joan hopes once the adult ME services are running, those parents will have an easier time - but they are scared
1:06:00 It happens more often in England, but a few parents in Northern Ireland have come close to having their sick child taken away from them
1:07:00 Joan doesn't want to take away people's hope, but she also doesn't want them to go through what she did with LP, the false hope - Joan says to put yourself in the place of someone who had cancer and ask yourself, 'would I do LP for cancer?' - ME is a physical disease and can't be cured with psychological tricks
1:08:00 You've got a physical disease that nobody can see on an x-ray or a blood test, but it is there and it cannot be talked out of your body

 

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

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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.

 

Jordan’s Story: “Mom, I just want to go home.” Jordan’s Mom: “You killed my daughter.”

Jordan’s Story: “Mom, I just want to go home.” Jordan’s Mom: “You killed my daughter.”

February 17, 2020

Sandy and Anthony Perez kept telling doctors their daughter Jordan was very sick. Their concerns were dismissed and Jordan’s pain minimized. They were ping-ponged between specialists, dealing with ongoing misdiagnosis, and doctors who refused to listen to Jordan and her parents and threatened to remove medical care.

When Jordan died in the hospital, Sandy and Anthony thought it was due to a yet to be diagnosed illness. Only later would they find out Jordan had been poisoned to death by the hospital and they were covering it up. 

Wanting justice for Jordan, Sandy and Anthony sought legal support - over 100 lawyers told them the same thing: California has a law that effectively makes hiring a lawyer for medical malpractice suits a non-starter: the law puts a cap on how much lawyers can be paid and how much victims can be awarded. Suing is a money losing proposition.

As Sandy and Anthony learned, the legal system is set up to deny justice to medical victims, and the medical system is set up to deny accountability of doctors. A de facto license to kill.

Jordan shouldn’t have died. 

Sandy and Anthony shouldn’t have to fight to find out how the hospital killed their daughter.

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Jordan's drawing, titled: Will you remember me?

SHOW NOTES:

  Interviewing Sandy and Anthony Perez about their daughter Jordan
0:05:30 Sandy was born outside of Chicago, but raised in California since she was 7 - had a normal childhood with 3 sisters - went to college - met Anthony in 1994
0:06:30 Anthony was born and raised in California - good childhood with great mom and dad - their daughter Jordan was born April 5th, 2000 - she was a cranky baby, didn't want to sleep unless being held, always wanted to sleep with them
0:07:30 She was a one-off child, liked to do things her way - she liked to dress herself, there was no arguing with her - she played soft ball since age 4 and made the city's all-star team for 2 years - and her Dad (Anthony) coached her - when they moved to the high desert, they put Jordan in 'travel ball' - a more intense game softball league
0:08:30 The league had better quality coaches and was geared to show to colleges - it is called 'travel ball' because they traveled to and played in different cities - Jordan was the kid who would befriend others - at Jordan's memorial service, several of her friends spoke of how they were alone but Jordan invited them to play
0:09:30 It was very important to Jordan that others felt included and were not left out - in May 2014 Jordan started to complain of headaches - Jordan had allergies, including grass, but benadryul helped - then her neck started to hurt - in December 2014 she went to the doctor with neck and head pain
0:10:30 Jordan was suspected to have mastoiditis (infection in the masto bone behind the ear) and sent her to the ER - they didn't find anything, didn't run any blood tests, suggested it was migraines and sent Jordan home - a couple of weeks later Jordan had symptoms of the flu, couldn't keep fluid or food down, so they took her to the ER - they told the ER doc about the previous mastioditis diagnosis, so they ran more tests and found blood clots in Jordan's brain
0:11:30 They sent them to another trauma centre and that is where Jordan was treated for the next 3.5 years - they were frightened and wondering how it could've been missed - blood clots don't usually show up on CAT scans, but they did in Jordan
0:12:30 They were told the blood clots were a rare complication from the infection in the masto bones - Sandy and Anthony asked how Jordan could've gotten mastoiditis, and were told via infection of the sinus or ear - but Jordan didn't have those infections, so how could that be? But nobody could answer that - the hospital put Jordan on a hepadrin drip for a day and then changed to lovonox injections - both are blood thinners to more blood clots, but wouldn't treat Jordan's current blood clots
0:13:30 They also put Jordan on antibiotics for 6 weeks to fight the infection - Jordan started to perk up a bit, her headaches would coma and go, and she was treated with Toradol, which Sandy understands is a super Motrin, and that seemed to be Jordan's 'wonder drug' - she would be much better for 24 - 36 hours on one dose - it appeared Jordan was getting better - what they didn't know was that Jordan wasn't getting better
0:14:30 During Dec 2014 while getting treatment at the hospital, Jordan appeared to have a stroke and they sent her to ICU - ultimately they sent Jordan home saying she was improving and to continue the antibiotics - Sandy and Anthony were told Jordan had a stroke, and told she did not have a stroke - Jordan was sent home early January 2015 but Jordan was in the local ER a few days later with uncontrolled chest pain - the local hospital called Jordan's trauma hospital to transfer her, but they refused
0:15:30 The local hospital treated her and sent her home - the very next day they ended up at the trauma hospital with chest pain, increased headache, blurry vision, and a reaction to the antibiotic medication - they admitted Jordan for a couple of days, adjusted her antibiotic and sent her home again - about a week later, the eye doctor suggested a lumbar puncture because of Jordan's blurry vision and swelling of the optic nerve - this showed Jordan's cerebral pressure was severely elevated
0:16:30 A lumbar puncture extracts spinal fluid, during the process they monitor the pressure level and check spinal fluid for infections - Jordan's pressure was elevated, nearly twice normal - and it can affect vision
0:17:30 The following year they did another lumbar puncture, but the day after Jordan would vomit just from being touched - they put in a lumbar drain, to drain cerebral spinal fluid and monitored her for 5 weeks and make a decision how to proceed - in Feb 2015 they made a decision to internalize the drain, making it a lumbar shunt, and sent Jordan home - her headaches seemed to be improving, but she was taking Motrin daily
0:18:30 Jordan started developing a lump where she had shunt surgery, the doctors said it was filling with cerebral fluid, so they had to do a revision surgery - Jordan had to lay flat after the surgeries, she couldn't get up to go to the bathroom, so was very uncomfortable - she had a surgical scar on her abdomen as well as her back, and she was in pain - March 2015 was the revision surgery
0:19:30 Jordan needed another revision surgery in May because cerebral spinal fluid kept leaking of her back surgical scar - in June 2015 they went to Jordan's softball team's banquet because they recognized that Jordan had been on the team, but too sick to play - they had to leave the banquet early because Jordan started leaking spinal fluid, and they went to the hospital - they took the shunt out, and reverted back to the lumbar drain - a few days later they implanted a VP shunt, going from Jordan's head to her abdomen
0:20:30 The tubing was in the ventricles of her right side, and drainig the cerebral fluid into her abdomen - they put a hole in her skull, and the shunt ran down her head, behind her ear, and over her shoulder and down her back - and that was very uncomfortable for Jordan - Jordan's diagnosis never changed: infection causing mastoiditis, with rare complication of blood clots, causing increased intracranial hypertension
0:21:30 In January 2015 they learned from an infectious disease specialist suggested cancer could be a cause a differential diagnosis - oncology did ask about cancer in the family, and Sandy and Anthony said there was cancer on both sides, but the doctors never followed up for the entire 3.5 years
0:22:30 But June 2015 Jordan had daily headaches, impaired memory and vision, and still too sick for school - she was on the hospital home bound program to do some school work - Sandy had to write down Jordan's words because Jordan had IVs in her hand - she finished her freshman year about a week before her sophomore year started - the family went on vacation in August 2015, but Jordan stayed in the condo rental, she wasn't well enough to leave
0:23:30 So Jordan was still exhibiting the same symptoms from the start, in spite of the treatments, in spite of the surgeries - Jordan was back in the hospital a few times for head and chest pain, but the hospital couldn't find anything wrong and would send her home - in Feb 2016, Jordan's eye doctor say that Jordan's optic nerve was swelling again and recommended opening up the drain further to reduce pressure and help her vision and so she wouldn't go blind, but it was not to help her headaches
0:24:30 Feb 2016 the neurosurgeon opend the shunt all the way, but Jordan still got sick and was in and out of the hosptial - in June 2016 she saw a new pedeatric neurologist at the same hospital, and he started suggesting it was migraines because of a family history - Sandy told him it wasn't migraines because Motrin doesn't work on migraines, and Motrin worked for Jordan, she didn't need anything stronger - he then suggested Jordan was abusing Motrin - they pointed out she was only taking 400mg a day, and that is not excessive
0:25:30 The doctor also suggested they go back to hematology, and they took her off the blood thinning medication in June 2016 - but Jordan still battled with headaches, blurry vision, and kept getting sicker - Jordan's health would be up and down, so Sandy and Anthony tried to enjoy life with her
0:26:30 But Sandy was frustrated the hospital kept saying it was migraines and she knew it wasn't - when Jordan complained of jaw pain, they sent her to a dentist who couldn't find anything wrong - Jordan's joints would ache, but rheumatology would say there was nothing wrong with her - Sandy got more frustrated so took Jordan to another hospital for assessment, they too suggested migraines - Sandy was still working, when Jordan was in the hospital, Sandy would work from her bedside - do her job around doctors, testing, etc
0:27:30 Anthony says it was hard, they didn't know what they were dealing with - sometimes Jordan would grab her neck and Anthony thought it was maybe muscle spasms - when she'd come into the living room to get something to eat, she'd be doubled over, holding her stomach, saying how much pain she was in
0:28:30 To be experiencing that much pain without a proper diagnosis is ridiculous - Jordan missed her sophomore school year, and was on the home study program, but they had to fight to get her proper courses and support to keep Jordan in her honour classes
0:29:30 Jordan missed her friends, and it was hard on her - in July 2017 Jordan was getting increased headaches and had a new lumbar puncture
0:30:30 Sandy told the hematologist that Jordan seemed to be having blood clots in her toes, the doctor dismissed that and said Jordan must have dropped something on her toes to cause the trauma - Sandy explained that was not possible because Jordan was mostly bed ridden - the hospital said that Jordan needed to be taken off Motrin, she was using and abusing it - that night Jordan was vomiting because of the pain
0:31:30 She was admitted to the hospital that same doctor said that Jordan had migraines and needed to be detoxed from Motrin - he told Sandy and Anthony that if they didn't accept his diagnosis of migraines, he would refuse to treat Jordan - meanwhile Jordan is very sick with a forced diagnosis that didn't fit - Sandy told the head nurse that if they are saying it is migraines, then they might as well discharge Jordan - then a neurosurgeon came in and said he reviewed all Jordan's MRIs of the past year and a half and saw that she had enlarged veins since spring 2016
0:32:30 He wanted to angiograms to see if that was causing issues in her brain - an angiogram is a catheter like needle into the body to see what is going on in the venous structure using contrast to show up on images
0:33:30 The neurologist who pushed a migraine diagnosis came in and wanted Jordan's complete history, so they told him about everything from 2014 up to that point - he said he would get a 2nd opinion hematology consult - but he never recorded it in her records and never requested it - he said he would give her a lumbar puncture but if it was a certain number they would have to concede he was right with the migraine diagnosis - Sandy told him what he wanted to hear to get testing and treatment for Jordan
0:34:30 When the numbers came back, Sandy maintained that it was not migraines, something else was making her sick - they discharged Jordan and gave her Motrin - they had one follow up appointment with the neurologist and he suggested it was psychiatric - he referred them to another neurologist and refused to treat Jordan - he followed through on his threat and refused to treat Jordan - they saw the new neurologist in September 2017, at first he mentioned psuedo tumor cerebri, this is alos intracranial hypertension when the brain thinks it has a tumor but it doesn't - he said he'd do some research and talk to them at Jordan's next appointment
0:35:30 Jordan was sicker and ended up back in the ER - they said it was migraines and copy and pasted previous notes that said Jordan was abusing Motrin - they put her on a detox protocol called DHE, a medication to help people withdraw from medications that are harming them - Jordan got sicker, not from the DHE, but from the pain - they also gave her Toradol (like super Motrin), so while they are detoxing her from Motrin, they give her high dose Motrin
0:36:30 The attending doctor said 'it looks like the DHE protocol is working' - Sandy said 'no, you approved Toradol, that's what's helping her, not the DHE protocol' - that doctor said they'll send Toradol home with Jordan - Jordan would be less sick with the Toradol, but after it wore off after 24 hours, she'd get sicker - Jordan had been taking the Motrin as directed
0:37:30 They went back to the neurologist who diagnosed intracranial hypertension, but he changed his diagnosis to migraines and attempted to treat her with migraine meds - they told him that Jordan did not have migraines - he suggested treatment with Botox - Jordan got sick during the appointment and they went across the street to the ER - again they said migraines, again Sandy and Anthony said it wasn't migraines, they gave her Toradol
0:38:30 The attending physician didn't examine Jordan, but asked if anybody had told them that Jordan had an enlarged spleen - Sandy said it had never been mentioned, what does it mean, what's the impact on Jordan - the doctor said 'its probably nothing' and they discharge Jordan with migraines - they went to Jordan's primary care doctor and said the hospital must be missing something - he order more testing, but it was to be done at the hospital, that's where all of Jordan's records were
0:39:30 On February 14, 2018 Jordan had abdominal imaging, ultrasound done - they wouldn't let Jordan leave at first - they asked about Jordan's history of blood clots and the shunts - they said Jordan had to follow up with her primary care right away - Sandy asked if they had to go to the ER, and they said 'no' - on the way home, Sandy called primary to make an appointment - Jordan was to come to primary care in the morning of Feb 16th - at the appointment they told the family that Jordan had 'portal vein thrombosis' which is blood clots leading into the liver
0:40:30 He sent them back to the hospital, they ended up in the ER - at the time they did not know that the person who introduced themselves as a doctor, was actually an unlicensed medical student, with no authority to examine, treat or discharge Jordan - his attending physician supervisor did signed saying she examined Jordan but never did - the 'doctor' said he didn't accept testing not from the hospital, and ordered all the same tests - they confirmed portal vein thrombosis - the 'doctor' said it was a GI issue and referred them to a GI department - Sandy called the GI department, but they refused to do anything while Jordan was in the ER
0:41:30 The GI department said Jordan needed to book a consult - Sandy told them they had previously requested a consult - regardless, they refused to set an appointment - Sandy asked the ER 'doctor' to bring in a GI doc to the ER for Jordan, but he said it wasn't necessary - they also asked that hematology be notified because this was the 3rd appearance of blood clots - again the ER 'doctor' said it was a GI issue and Jordan needed to be seen only as an outpatient - they discharged Jordan and told her parents it was not a life threatening condition
0:42:30 The following Tuesday Sandy called the GI department to make an appointment - they said they would review Jordan's file and call back in 24 - 48 hours with an appointment - but they didn't call until March 2nd - Sandy also called hematology to make sure they been told Jordan had more blood clots - they called back and said they were not told, and to take Jordan to the ER and they would admit her - Jordan was admitted on Feb 20, 2018 to Feb 23 -- on the 21st they wanted to send her home to be an outpatient, but Sandy demanded the GI come see Jordan will she was inpatient
0:43:30 The GI said that wanted to do an endoscopy to see inside her abdomen - they said the results were mild reflux, but nobody could explain the blood clots - Sandy asked 3 different hematologists about cancer testing - one said they could do that test, another indicated he would order them, but never did - the 3rd said cancer testing was unnecessary because her blood tests were normal
0:44:30 This 3rd hematologist is the same one who in 2015 was told to do a cancer differential diagnosis, which he never did - but Jordan's blood work was not normal - they sent Jordan home - on Feb 26th they were back in the ER, Jordan was doubled over in pain - she was seen by a resident doctor who insisted Jordan was constipated and gave Jordan an enema - Jordan felt completely humiliated - and still in pain
0:45:30 The attending physician signed off said she had examined Jordan, but she never came in, they never saw her - she was sent home with constipation medication - on the Feb 27th they called oncology, they advised managing Jordan's pain at home because they had an appointment on the 28th with hematologist and he would admit her to the hospital - on Feb 28th they had their appointment with the hematologist - Sandy begged him to help her - he said it was a GI issue, he could refer her to pain management, and sent her home
0:46:30 He never put that in Jordan's medical notes - that night they called oncology to let them know they were bringing Jordan to the ER and listed her symptoms - when they got to the ER just before midnight - they made Jordan wait for 4 - 5 hours -- Sandy kept letting them know Jordan's pain was very high, but other patients were prioritized, including somebody walking out on crutches from a sprained ankle
0:47:30 Jordan was admitted to the hospital on March 1st - the hospital staff said Jordan was quite sick - Sandy said 'yes, we've been trying to tell you that for 3 years' - on March 4th a new hematologist asked about the cancer testing - she suggested Jordan may have lymphoma and they needed to do further testing - Jordan was being monitored in the ICU
0:48:30 On March 5th Jordan was moved back to onclology and they did a bone marrow biopsy for cancer - on March 6th they were waiting for test results - Jordan was heavily agitated, kept trying to get out of bed - the last words she said to Sandy were "Mom, I just want to go home" - Jordan layed back down and fell asleep - later that night Sandy went to Ronald McDonald house to get some rest
0:49:30 About 30 minutes later the hospital called Sandy to say Jordan was non-responsive and they had administered Narcan - Sandy got back to the hospital and over heard the doctor arguing for the last bed in the ICU - they told Sandy again they had given Jordan Narcan, it is given to someone to reverse an overdose - On March 6th they moved Jordan back to the ICU and said they needed to put Jordan into a medically induced coma to allow time for her to heal
0:50:30 The resident doctor told them that Jordan's ammonia levels were very elevated - Sandy asked how they missed that? - his answer was 'not to focus on placing blame, but to focus on Jordan getting better' - early March 7th they placed a drain in Jordan's abdomen - Instead of draining normally, it was draining into Jordan's abdomen - a couple of hours later the same doctor that was arguing for an ICU bed, told Sandy and Anthony that they were life-lining Jordan to another facility because she needed a liver transplant
0:51:30 So they started to prepare for that - Anthony went home to grab some sleep and Sandy stayed at the hospital with Jordan - at about 8am the ER attending doctor said Jordan was very sick, Sandy said we've been trying to tell you that - during morning rounds, the GI doctor who saw Jordan in Feb, came running in and told the attending hematologist she failed to read Jordan's lab work from weeks prior when Jordan was in the hospital and had alpha one anti trypsin deficiency disorder, and it affects the liver and lungs
0:52:30 The doctor than told Sandy she'd provide more info once Jordan was stable and transferred to another facility - Sandy and Anthony thought the worse was probably over, and the staff never said Jordan was dying - around 8:30 neurosurgery came in and said they needed to remove the shunt tubing from her abdomen because she had an infection and they didn't want it to spread to her brain - so Sandy and Anthony permitted that surgical procedure
0:53:30 Sandy was waiting in the family room right outside the ICU while they performed the procedure - at about 10:40 am while Jordan was still in surgery, a social worker came into the family room and told Sandy that Jordan had 'coded' during the procedure - Sandy remembers running to Jordan and yelling 'you killed my daughter, you killed her' - the social worker asked Sandy what she meant - she said that they'd been bringing Jordan for help and they kept saying migraines
0:54:30 They did CPR for about an hour until Anthony could get to the hospital - they gave Jordan blood products - but they stopped at about 11:40 am - that day they asked Sandy and Anthony if there was anything they needed - Sandy and Anthony asked for the lab reports and testing as they had other children and wanted to know if there was anything they needed to worry about - the hospital said they would get those results to Sandy / Anthony, but they never did - about 2 weeks later, they went to the hospital's patient relations and requested the information again - and filed a complaint
0:55:30 State law says they have to turn over medical records within 15 days, but they didn't hand them over until about 40 days later - when Sandy was going through the records over the next few months, in July 2018 she realized the records were missing a huge chunk of data - so they requested again, and it took another 45 days to get more records - to this day, Sandy and Anthony still don't have all Jordan's medical records - that info was either withheld, or never recorded
0:56:30 In Feb 2019, Sandy and Anthony went to Washington DC for rare disease week - they went because of the rare blood disease Jordan was diagnosed with 6 weeks after her death, called 'primary myelofibrosis', an extremely rare form of leukemia, less then 50 children in the US diagnosed with it - less then 20,000 nationally - someone at rare disease week said something sounded fishy - they were advised to ask if Jordan's death had been reported to any agency
0:57:30 Sandy contacted the California Department of Public Health to see if Jordan's death had been reported - they told Sandy they had no record of Jordan's death - Sandy asked if the hospital was required to report Jordan's death - Sandy was put on hold - she was then recommended to file a complaint - so she did file a complaint - even though Sandy and Anthony have had several conversations with the investigator, they still don't have any info and its been 10 months
0:58:30 It is a state investigation, so red tape, bureaucracy, limited personnel - those things have caused delay - they hope to get more records soon
0:59:30 They had Jordan's GP look at the records, and paid a professional to review and confirm Jordan's eventual diagnsosis of 'primary myelofibrosis' - the hematologist who had suggested lymphoma called Sandy and Anthony on April 23, 2019 and asked if any one had spoken to them about what was going on? - Sandy asked if Jordan's diagnosis had of been caught earlier if Jordan would still be alive, and the hematologist said 'yes' - but never heard from the hematologist again, but knows she left the hospital in April 2019
1:00:30 Sandy researched 'primary myelofibrosis' and life expectancy is up to 10 years after diagnosis - but she could have been cured with stem cell transplants or been in remission and lived a full life - in April the hematologist said she'd written a report and what happened to Jordan - in Sept 2019, Sandy and Anthony found out that the hospital had overdosed Jordan causing her death - and they were not monitoring her as they should have been
1:01:30 Sandy and Anthony think the hematologist report covers an adverse event, and by state law that must be reported, but the hospital chose to cover it up instead of reporting it - in California they have laws that put a low cap on medical malpractice settlements making getting a lawyer impossible because they won't earn any money
1:02:30 So the system is set up so patients can't get justice, and doctors are not held accountable either by the justice system or the state medical board - Sandy and Anthony have not heard from the medical board since they filed their 9 complaints against the providers
1:03:30 Sandy and Anthony asked, in January 2019, the investigator to include another 257 providers associated with hospital or Jordan's care, but they have not heard any thing - Sandy and Anthony have been advocating for reform of the MICRA Act (medical injury compensation reform act of 1975)
1:04:30 MICRA limits compensation to $250,000 due to medical injury or death by medical injury - it also limits how much an attorney can be paid to about $75,000 - but in Jordan's case it would cost about $200,000 to litigate, making it economically infeasible, and that patients can't get justice - there is a current ballot proposal called the Fairness for Injured Patients Act (FIPA) that they want on the November election ballot to overturn MICRA
1:05:30 Sandy and Anthony filed a medical malpractice case in May 2019, naming 22 defendants - they are expecting the defense counsel to do a 'demure', and that is saying the case is unwarranted and why - then Sandy and Anthony will have an opportunity to respond to the 'demure'
1:06:30 Then the case will be heard by a judge who will decide if the case has merit or not - Sandy and Anthony don't have a lawyer, but have consulted with attorneys, but Sandy and Anthony are writing the legal briefs
1:07:30 There are thousands of Californians who've been medically injured who have no recourse - that what the FIPA will remedy - and that is why families are speaking publicly - under the current law, children and the elderly are most vulnerable - Sandy has cashed in all her savings to help pay for things
1:08:30 They have started a GoFundMe page to help with legal bills they will occur
1:09:30 Sandy is up and down emotionally - she has a lot of work today in addition to her day time job - reviewing files, preparing legal documents, being a wife and mother - but Sandy doesn't feel like she's had a chance to grieve the loss of her daughter - Sandy and Athony are making meaning through advocacy in Jordan's name - they want to make sure the hospital doesn't kill more people -- they use #JordansStory on twitter and Facebook
1:10:30 Sandy says if you're sick, or a caregiver, and you don't believe the doctors, push back, seek 2nd, 3rd or 10th opinions if you have to -- the doctors told Sandy and Anthony that there is so much info about diseases, they don't even know 1/ 10th of it - so don't let them discourage you, and ask them to have conversations about your own research - don't let them disparage you, don't let them chide you, don't let them discourage you from doing your own research and asking your own questions
   CONNECT WITH SANDY AND ANTHONY ABOUT JORDAN'S STORY
 

Twitter @alpslp98

Facebook: www.facebook.com/jordansstory

Fairness for Injured Patients act: www.fairnessact.org

GoFundMe - Justice for Jordan

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

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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.

 

Tina Gomes: Dentists on Probation: What You Don’t Know Can Harm or Kill You.

Tina Gomes: Dentists on Probation: What You Don’t Know Can Harm or Kill You.

February 10, 2020

Singer, songwriter and talent manager Tina Gomes of California needed a dentist for a straightforward procedure. She searched for Board Certified dentists and made an appointment. What she didn’t know -- because the Dental Board failed to inform the public -- was that the dentist had harmed previous patients and was on probation.

Tina would only find all of this out after spending 10s of 1000s of dollars and enduring years of needless headaches, jaw pain, infections, ill health and inability to chew solid food. As you will hear, Tina was betrayed not only by the dentist, but the Dental Board and the Attorney General as they chose their own profits over her, and the public’s, safety.

Tina learned the hard way that dentists can take sketchy continuing education courses - like a 6 hour course on a weekend on anaesthesia. Recently a patient died in the dental chair due to anaesthesia complications. These dentists start practicing these ‘procedures’ on unwitting patients -- essentially making them guinea pigs, these ‘procedures’ often require ongoing fixes and devices, turning dental clients into perpetual patients.

Tina discovered that the dentistry industry is not about accountability, or oversight, or patient safety -- dentistry is about increasing profits for dentists, Dental Boards, and Attorney Generals on the backs of - and out of the pockets of - patients.

SHOW NOTES

0:05:00 Tina grew up Vancouver, Canada - wonderful parents, they were immigrants from Portugal - provided comfortable childhood - there are a lot of people who did not have good parents like Tina so she's grateful
0:06:00 Tina has 2 siblings, both sisters, the 3 of them were born 1 year apart - but one sister died in a car accident the night of her high school graduation party - Tina's older sister lives in Alberta, Canada
0:07:00 Tina moved to California when she was offered a record deal by Richard Perry - people in the inustry know his reputation - Tina's father was a phenomenal opera singer
0:08:00 A lot of music in their house - in Vancouver, her boyfriend was in a rock band and when Tina sang he said she should be performing - Tina wanted to be a songwriter, not singer - song writing is a solitary endeavour
0:09:00 So Tina started singing and they covered other band's hits and played in a lot rock clubs and was noticed by Rae Dawn Chong, her father is Tommy Chong, and he's part of the iconic Cheech and Chong comedy duo - Rae Dawn 'discovered' Tina, and said they'd form a band with Rae Dawn's cousin Lavina Fox and go to Los Angeles and sign a record deal with Warner Bros
0:10:00 Tina started working with Richard Perry and staying at his home, formerly Elizabeth Taylor's home - but Rae Dawn left the group for a movie deal
0:11:00 But Tina had met other singer / songwriters who wanted to work with Tina - she also met the man who would later become her husband, and he introduced her to more producers - Tina also met Jesse Powell and his family and became close friends - Jesse produced a song with Damon Thomas who is Kim Kardashian's ex-husband
0:12:00 Tina knew she didn't want to be an on stage singer, she wanted to help Jesse because she thought he was the greatest talent - so Tina decided to manage Jesse and get him a record deal and that brought joy to Tina's life
0:13:00 Tina managed his career to be #1 on Billboard and she found more talent to manage - so fulfilling to be around such talent - Tina felt blessed to be doing the work with those talented people
0:14:00 That's what Tina did for years, while also struggling with dental issues that started in 1992 - one day Tina and her husband went to a Malibu restaurant and one of her front crowns broke off - they went home and searched for a board certified dentist
0:15:00 They contacted a dentist to see if he could see Tina immediately just fix her crown - Sarah has to compose herself and explains that PTSD is impacting her ability to tell what happened...things she's trying to forget
0:16:00 Tina put her trust in the dentist, and so her husband trusted the dentist - the dentist made a recommendation to replace her sorrounding teeth so everything matched - biggest mistaked Tina made - he upsold Tina on the dental work he'd do - but the crown he made kept falling out, so he made a bridge, but that started damaging the neighbouring teeth, and so he gave Tina a bigger bridge
0:17:00 Tina was working and traveling a lot representing her clients, but she never felt like a normal person with crowns falling out - she returned to the dentist and he's blame Tina "Are you chewing rocks?"
0:18:00 The work he did would be okay for a short while, but then Tina had to revert to drinking smoothies, soup, foods she didn't have to chew, but they kept falling out and she kept returning to him for repairs - but that resulted in infection and everything would have to come off her teeth
0:19:00 With Tina's job/travel demands, it seemed easiest to keep seeing him - Tina compromised and adjusted to the smile he created - as all dentists expect patients do - they want to take your mouth, recreate it, profit it from it, and say it is better for you - that's the way they operate, especially since the continuing education courses are centered around marketing
0:20:00 In California, a dentist can take a 6 hour course on a weekend and start using anaesthesia on their patients, and they don't even have liability insurance - It is not about the patients care or safety - they take your natural teeth and recreate what they say is a more healthy smile with manfactured teetch - that compromises how the body heals naturally - but it is the dentist's mouth at that point, relying on some continuing education course
0:21:00 This went on for 12 years - Tina become good friends with the dental assistant and her family, the dentist and his family because Tina spent so much time in the dental chair with the dentist
0:22:00 Tina was essentially his experimental subject of a continuing education course, a billion dollar industry - Tina found out the dentist had been lying when she sued him - Tina was increcibly sick and in a lot of pain - covering her mouth in public because she was embarassed
0:23:00 Tina had invested 10s of 1000s of dollars with the dentist she trusted - Tina's husband didn't trust him and fought with the dentist - Tina just wanted to be healthy but her mouth was infected - but the dentist touted himself and bragged about his awards and advanced treatment
0:24:00 He positioned himself above all other dentists - he was concerned Tina's bite was off, but it wasn't off - Tina had moved from another country to succeed in the music industry and her 'bite' never bothered her until he got into her mouth - he only had to take care of her teeth, she didn't have any when he was finished
0:25:00 Tina was so sick, her weight got dangerously low and she was hospitalized - for months she lived on liquid foods - Tina loved salads but couldn't eat anything crunchy any more - she kept going to the gym to deal with the anxiety
0:26:00 When the TMJ gets out of place, the body tries to adjust and people grind their teeth - Tina went through countless crowns, dental pieces, etc - her dental record looks like an encyclopedia it is so lengthy - she knows she'll never be able to chew food again
0:27:00 Because she grinded her teeth during sleep, the crowns, bridges etc would fall off and she would call him in the morning begging him to see her immediately so she could go to meetings - when she sued him, he delayed handing over her dental records for 3 months, and told the Dental Board he lost all her records in a computer crash
0:28:00 Tina started to research the history of her dentist, a man she completely trusted with her health - but found out there are 100s of victims just in the state of California
0:29:00 Even though the Dental Board deems a dentist incompetent in court documents, they can continue to practice dentistry due to an 'apparatus of compromise' deal with the Dental Board as long as they pay the Attorney General fees, including investigative fees to the Dental Board
0:30:00 They all start collecting these investigative fees once the decide they will investigate a complaint, it is a huge money mill
0:31:00 If the investigators and Dental Boad decide they are going to file a Accusation with the Attorney General - Tina's dentist was already under investigation for harming several patients doing the same procedure he did to Tina - and to a surgery she never agreed to - but none of his patients were informed about the Investigation or Accusation
0:32:00 The Dental Board was so incompetent they never posted his probationary status on their website, which is their duty and they promised to tax payers that pay into the fund that allows them to sit on the Board and decide how to protect patients - it is a scam
0:33:00 They collectively made money by keeping his Investigation a secret and are still profiting today - there is not one patient in that dentist's office right now that know about his history, or what he did to Tina, and he's still practicing
0:34:00 The Dental Board spends more time concealing harmful patterns in concert with the Attorney General's office - they don't make a lot of money off of good dentists, they make a lot of money keeping bad dentists licensed so they pay high fees - as dental patients, we are investing in our health with high risk dentists because there is very little over sight, they are self regulated
0:35:00 Tina won her lawsuit, but uses air quotes around 'won' - because her lawyer coached her to accept a low figure settlement
0:36:00 Tina is not happy about the settlement, she feels 'raped' - there is a $250,000 cap on settlements / awards - the reality is that Tina is in just as much pain today as when she walked into the dentist's office and faces a 5th surgery to repoir his mess
9:37:00 The most important thing Tina can do now, because her loss is something she has to face every day, but is managing it well, because there was a time when things were more difficult - Tina wants to be there to give guidance, because there was no one for her - the Dental Board and Attorney General work in concert to make sure the patterns of harm by dentists is not available at the place and time of treatment
0:38:00 Tina's Bill Proposal says that patients must be informed at the place and time of treatment if the dentist is on probation - Tina's dentist was on probation and that was a huge risk to her health and finances
0:39:00 Both the Dental Board and Attorney General are making money on probation dentists, so patient safety is not a priority - every Dental Board in every state advertises that if there is a conditional status of a dentist, it must be posted on the website - but ther is no gaurantee that will happen, Tina is living proof
0:40:00 That is another way they are protecting their own interests, not the patient - but they've turned the mouth into marketing options - including 'neuromuscular dentistry' which is just the worse - Tina is working with a patient now with a beautiful smile who was convinced her bite was off
0:41:00 There are no reasons to charge her to come in to make adjustements to her perfectly healthy teeth - but they convinced her that her bite was off and she would be more comfortable and beautiful after the procedure, less pain, sleep better, breath better
0:42:00 Doctors and dentists can sell you almost anything, they are into upselling their products and services because it helps their business, not your teeth - in 2010 the Senate Oversight Hearing Committe asked Tina to come and speak at the sunset review of the Dental Board, but it was a huge sham
0:43:00 They were eating cake while patients testified about serious dental harm, like with anaesthesia and the patient died in the dental chair - it was the worse thing Tina saw -- but Tina has former Dental Board members helping her, they want her to expose the truth - and telling every body patients are not safe - and that is not fair to the really good dentists
0:44:00 Tina doesn't believe that probationary dentists who pay big fees to the Dental Board and Attorney General will change their harmful practices - the patients they harmed were assaulted - and continuing education courses are marketed to get perpetual patients to make more money
0:45:00 It will also fund the research labs, they are a billion dollar industry - Tina says that anyone with healthy teeth should never get cosmetic enhancement - advertising on ABC (tv channel) and the ADA permit its promotion - the Attorney General is responsible for patient safety, they should be stepping in to stop the influence through tv media
0:46:00 They are motivating dentists by dollars - Congress is motivated by big pharma dollars - money is the priority - when you're choosing which dentist you're going to go see, you're really choosing which risk - how much are you willing to lose? - some Dentists offer 'care credit', a credit card to pay for dental work
0:47:00 The patient may take the credit card for $5000 worth of work, but the dentist gets busy on $10,000 worth of work - the dentists are not caring for your teeth, they are caring for their dental device
0:48:00 The former West Virginia Attorney General, who is the World Health Organziation's President for Mercury Free Dentistry wrote Tina's Bill - but Tina feels like a failure because there is every effort to ensure a patient doesn't know their dentist is on probation
0:49:00 A Bill was recently passed that only applied to doctors, not dentists, and the Bill required doctors to tell their patients if they were on probation for a 'serious crime' like sexual misconduct - but if you go to a dentist and he removes all your teeth, causes constant pain and sickness because you can't chew food, that's a pretty serious crime - but they kept dentists out of the law
0:50:00 Tina feels like a failure because even though she had great support from highly respected people with influence in government, but here we still are today
0:51:00 Tina doesn't feel like she's up against the 'dental machine' but is up against crooks - it us uncivilized for a government agency to tell the public they are protecting them - but cover up and don't inform patients - so its not a big machine, it is a few people on Dental Boards in each state - and they profit from dentists on probation
0:52:00 These few board members are charged with the duty to protect patients - the goverment isn't bad, it is made up of bad people
0:53:00 This is how a bill gets passed that protects the bad secrets - using tax payers dollars - we're supposed to trust the government - in spite of Tina's great efforts legally and via media...
0:54:00 ...the government flagrantly ignores their duty to protect the public - the ADA (American Dental Association) advertises they protect patients, that is false advertising
0:55:00 Tina was interviewd by Cecilia Vega of the tv news show 20/20 - but the interview was 'shelved' - Tina hopes they will air it one day
0:56:00 One of the producers called Tina to tell her it wouldn't be aired - Tina asked 'what happened?' - but they didn't give any type of reason - but it was at the same time Governor Jerry Brown was trying to pass a bill for adequate notification about doctors on probation, but it didn't include dentists
0:57:00 Tina did receive an apology from her Dental Board for not posting her dentist's probation status on their website and he had harmed several patients before Tina - a lot of money is made by the Dental Board, Attorney General's office, Probation Monitor - in California they don't have to have liability insurance
0:58:00 The cost of surgery to repair the former dentist's mess was $50,000 - but Tina didn't trust dentists, didn't want to go through another surgery, but only weighed 89 pounds
0:59:00 Tina is not giving up on Tina's Bill - she has so many people contact her for help and advice - and she can't turn her back on them either - Tina thinks she may have another surgery - she tried bone grafting twice, they failed - a lot of bone removed, teeth all removed - she was robbed of all those years of health, and to have a health senior life
1:00:00 Tina grinds her teeth at night and that causes headaches every day, a lot swelling - Tina avoids drugs but had to take acetominophen for a few months because she had adhesive encapsulitis with bilateral tendonopathy - the tendons from both shoulders limits Tina' mobility, but she's in physio therapy for that - but the pain goes up into the TMJ (jaw), pain she's had for all these decades
1:01:00 The pain goes down to her chin, because it is all connected - the next surgery will the last because she doesn't have enough bone left for implants - the nerves in her face are exposed and if those nerves were cut she'd loose use of her tongue, drool, impaired speech
1:02:00 A lot of victims don't like to eat in public because of embarrassment - even a simple kiss with someone you love is gone - the whole time Tina is speaking to me she says she feels like she looks like a monster
1:03:00 It is unfair and uncivilized to permit Dental Boards to license someone they would never put their children in that dental chair - Tina knows one woman who is now bed ridden - her parents have to help her with basic functioning - Tina helped her get an attorney
1:04:00 Tina finds reading and going to the beach and ocean therapeutic - she writes her problems in the sand and then a wave comes and washes it away
1:05:00 You can connect with Tina on Facebook at Tina's Bill Proposal - she posts substantive info there that Dental Boards and the ADA don't
1:06:00 If lettuce is making people sick, great strides are made to protect people, but if its dental, it is covered up and kept quiet

Connect with Tina Gomes - Tina's Bill Proposal on Facebook

 

Sarah Price Hancock interview (part 3): Surviving Shock Treatment (ECT) and Psychiatric Medications

Sarah Price Hancock interview (part 3): Surviving Shock Treatment (ECT) and Psychiatric Medications

February 3, 2020

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

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Sarah Price Hancock (part 2): Surviving Shock Treatment (ECT) and Psychiatric Medications

Sarah Price Hancock (part 2): Surviving Shock Treatment (ECT) and Psychiatric Medications

January 27, 2020

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

 

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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 

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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.

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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

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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