Medical Error Interviews

Medical Error Interviews

By Scott SimpsonSociety & CultureDocumentaryScienceMedicineHealth & Fitness
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Medical Error Interviews episodes

  • Howard Bloom (part 2): Einstein, Michael Jackson and ME/cfs -- How Howard beat chronic fatigue syndrome

    At the end of part 1 of my interview with the iconic Howard Bloom, he’d just told us about getting the flu, but instead of getting better in a few days, he got much sicker.  Nobody who gets the flu thinks that they will not recover -- we all assume we’ll feel crappy for a few days and then get back to work -- just like how we initially thought survivors of the COVID virus would get back to their pre-COVID health, but now we’re hearing reports of ongoing fatigue and neurological symptoms in a significant number of people who have had COVID.

    Research of the SARS pandemic and other viral infections, tells us that not everyone will recover -- some people will develop myalgic encephalomyelitis (aks chronic fatigue syndrome), or ME/cfs, like Howard did.

    As the COVID pandemic settles into our nations and neighbourhoods and we wait for treatments or a vaccine, we have to wonder how many people with COVID will remain very sick and disabled by ME/cfs? And will you be one of them?

    Now here’s part 2 of my interview with Howard Bloom, the author of the newly released ‘Einstein, Michael Jackson and me’, as Howard shares how he coped with being mostly bed bound for 15 years, and what protocol he uses to keep himself pursuing truth in science.

    SHOW NOTES:

     

    0:05:00
    Howard can't even remember being at work on Monday - about noon on Tuesday he told his colleagues they had to get him out of the office immediately because soon he'd be too weak to walk upstairs - his staff literally dragged him to the car to take him home - he doesn't know how he made it upstairs to his 4th floor apartment because he was so weak - Howard was too sick to leave his bedroom for 3 months - often too weak to think and too weak to speak
    0:06:00
    And the Howard got better, he thought it must have been a really bad flu - Howard did not see a doctor during this time, he was too weak, and doctors stopped making house calls - when Howard got better he went to see a fancy doctor who gave him a fancy diagnosis of Duchenne Syndrome (muscular dystrophy), but he was wrong - Howard got back to walking every day
    0:07:00
    One day Howard had John Mellencamp playing at Madison Square Gardens, The Scorpions playing at The Meadowlands and opening for Metallica, and Cyndi Lauper was graduating from high school, she had dropped out, but she was getting an Honorary Diploma - so Howard had a very busy day
    0:08:00
    "That day broke me" - he had strange, unbelievable symptoms - if it was 90 degrees out, he'd be freezing, shivering, teeth chattering - a breeze from an open window would hit Howard hard, so he had to forbid people from opening windows, even on 90 degree days - on 40 degree days, he'd be overheating and sweating - his thermoregulatory system was broken - he had no idea what the fuck was happening to him
    0:09:00
    At some point Howard went to his family doctor, who could not diagnose him - Howard told his staff he didn't know what was wrong with him, he could be dying, but he couldn't work any more and gave them the business - the next day he was offered $350,000 for the business, but he declined
    0:10:00
    Howard finished 2 weeks of work, went to his bedroom and didn't come out for 15 years for all intents and purposes - Howard did some research and told his doctor he thought he had chronic fatigue syndrome (CFS) - the doctor said there is no such thing as CFS - but 3 years later to doctor thanked Howard for educating him on CFS, because he'd been seeing it in a lot of his patients
    0:11:00
    Howard says that when you have an illness with no name, you are not on the map of humanity - so it is scary to have CFS and because it is scary to others, they don't even acknowledge it - if you lose the ability to walk, Howard lost the ability to speak for 5 years, not a single syllable - he also couldn't have another person in the room with him - when things like that happen, you lose connection to humanity
    0:12:00
    You are stripped of a sense of being human, and before that you were not even aware of that sense, but you know it when its gone - Howard said it is more unsettling than he can describe - it took Howard 3 years to re-build an identity, in the only place he could 'walk' around: cyber space
    0:13:00
    The 1st 3 years of being sick and bed bound, Howard tried to work at home but kept relapsing and having to start at zero again and try to build up his ability - but he was getting worse, and his 'recovery' less so each time - then he realized he was spending a lot of energy sitting up
    0:14:00
    By saving energy by not sitting up, Howard eventually got his voice back - Howard had his assistant set up 2 computers by his bed and jerry-rigged some foam to support the keyboard so Howard could see and use it as he lay horizontal
    0:15:00
    This allowed Howard to connect with the outside world - this was 1991, so no world wide web, no search engines, no Amazon
    0:16:00
    Through a friend, Howard took a non-paying job with Art College in Pasadena and they had created a virtual world that Howard could get into and 'walk around' using his cursor and mouse pad - he also discovered online romance - most days he could type, but not always could he lift his fingers
    0:17:00
    Howard became a Lothario online - he realized we get bodies we did not choose - but online we are untethered from our bodies, Howard thought that was astonishing - during those 15 years he founded 2 international science groups and wrote 3 books - but he was in solitary confinement and that produces pain of a kind no one else has experienced
    0:18:00
    They are a nightmare, torture, hideous because we are built for social contact
    0:19:00
    Howard's life was built on books, his obligation to society was books - 'books were me' - so Howard only had 2 things: his books and his marriage - then in 1994 his wife decided to divorce him - she had been leaving town to look after her mother with Alzheimer's, but leaving Howard alone for up to 3 days - it was more horrible than Howard can convey in words
    0:20:00
    Howard begged her not leave him alone for long periods, but she started leaving him alone longer - soon she left Howard and he found 2 people who would live in his former step daughter's bedroom and they would feed and cloth him
    0:21:00
    One day his wife, Linda, came to visit him, unannounced - Linda brought a lawyer with her who served Howard with divorce papers - stressful situations drove Howard's body into relapse - but Howard read the papers anyway
    0:22:00
    It said if you don't answer in 20 days you lose everything including the bedsheets you're lying on - his wife had brought him a Teddy bear and said she wanted to be friends - he's never spoken to her since, that was their Pearl Harbor - Howard managed to find a lawyer even though he could barely talk
    0:23:00
    Howard's lawyer asked for a disability exemption to attend court, but it was denied - he was too sick to travel many hours to the court from New York city to northern New York state and it would take him 3 months to recover - the judge didn't give a shit - because CFS didn't exist, it meant Howard wasn't ill
    0:24:00
    This caused Howard immense emotional pain, he wanted to disappear - so one night he took 120 valiums and 15 thorazine and lidocaine
    0:25:00
    Howard injected all 5g of the lidocaine - but he only did intramuscular and not intravenous - for 3 days he laid in bed like a corpse
    0:26:00
    The only muscle that moved for 3 days was his diaphragm - if blood stops circulating you're in trouble - Howard woke up 3 days later
    0:27:00
    He found blood had come out his chest and neck - if he wasn't a Jewish Atheist, he could've applied for Sainthood in the Catholic church - and he's lost the use of 3 limbs because of ischemia, lack of circulation - he could only use his right hand - his doctor made a house call - he said he wanted to send Howard for 7 tests - Howard said 'fuck that, I can't even get up and down my stairs'
    0:28:00
    He told the doctor to give him 4 days to get the use of his limbs back - Howard learned how to stand and balance - by jerking his hips forward he could do a semblance of walking - he started by walking to his living room and back, and increased the frequency by 1 each day until he got to 9 miles on the pedometer
    0:29:00
    His theory was that if he worked his legs everyday to overcome the eschemia, he'd get the blood flow back to his limbs, and he did get their use back - Howard was put in touch with a journalist who had been raised by evangelical parents who were trying to put rock n roll out of business
    0:30:00
    Howard said he could be interviewed on Christmas day, because Howard would feel especially lonely on that day - he was working for Disinformation.com, and it was headed by Richard Metzger - Howard looked him up and saw he interviewed extreme people
    0:31:00
    Howard called him up and said 'do you want to walk with a walking corpse? - Come to my apartment at 1pm tonight' - Richard came and talked and took notes until 6am and wrote "I have met God, Bloom is the Einstein, Newton and Darwin of the 21st century'
    0:32:00
    When Howard got sick, there was no info about CFS - there was an article by Hillary Johnson that had appeared in Rolling Stone about Epstein Barr virus - he thought it sounded horrible, but that he wouldn't get it....but he got it.
    0:33:00
    Then they found it wasn't causing CFS - Howard says that to the best of his knowledge, they still don't know what causes CFS - for Howard, any stressors would cause a relapse, so he avoided stress as much as possible - of course the divorce was a major stressor
    0:34:00
    So he would watch Golden Girls and read humour books - but sometimes the 'crisis' in the Golden Girls would set off Howard's stress response and it would take him 3 months to recover from an episode of Golden Girls - he tried to read the blandest writing, like James Thurber
    0:35:00
    Howard loves Thurber's books - one was about dogs, he loved it...until he got to page 98 when he described a dog fight, and that flattened Howard for 4 months - its hard for people who've never had the experience to conceptualize how conflict on a tv show can cause months of physical disability - but Howard has a theory based on what drugs helped him
    0:36:00
    We have a stress handling system and like many things in the body it works on a Cheritonian System, a balance between and excitor and an inhibitor
    0:37:00
    Next time a loud noise happens, check your cognitive system: it is alarmed trying to figure out what it is - our bodies have glutamate, a chemical stimulant - we also have an inhibitor called gaba - Howard started taking valium
    0:38:00
    He says you have a 20 minute window after a stress response to do something about it or you are fucked - but if you take valium you can avoid a relapse - but if you miss that 20 minute window, you'll be sick for months, too weak to do anything - eventually he convinced his doctor to give him oxytocin, which helped
    0:39:00
    Then Howard started on gabapentin - valium, oxytocin and gabapentin all feed into the gaba system, the inhibitor - so Howard's system was in hyperdrive all the time, there was no inhibitor - sometimes Howard had to take 27 valium at a time
    0:40:00
    At that same time the Journal of American Medical Association came out with a cover story saying sometimes an overdose of a drug could be what they need to come back to normal - Howard now takes 30 different drugs and supplements twice a day, it takes about 30 minutes - some he injects intramuscularly, like magnesium, 1 cc of oxytocin, and 2 cc of B12 methylcobalamin - has been on the regime since about 1998
    0:41:00
    And slowly, slowly, slowly these drugs helped him recover from CFS - by 2003 he was able to get out of the house - during the previous 15 years he had repeatedly worked his way up, adding one step at a time, until he could climb the 4 stories in his house, and then he started adding 20 feet at time on his sidewalk, but then he's have a relapse - that happened maybe 3 times during those 15 years
    0:42:00
    But once he got the drugs he was able to work up to 6 miles a day - Howard doesn't know of anyone else taking his regime - one day when Howard was at his 'CFS' doctor, the doctor showed him off to other patients as an example of what the doctor could do - but he was misleading them, because what he suggested was not what Howard takes - in fact, Howard found the things the doctor used to be useless
    0:43:00
    Howard took a very scientific approach to finding what worked - monitoring what worked, what didn't - one day a good friend contacted Howard and said the Duchess of Kent has what you have, can you write her a letter about how to cope with it - so Howard wrote a pamphlet, 16 pages - and had it updated in 2003 - realizing with CFS you have a very limited amount of energy and if you exceed it you're in big trouble
    0:44:00
    Howard's wife convinced Dr Derek Enlander to come see Howard - there was Dr Susan Levine too, but she required CFS patients to come into her office - 'fuck that, does she not know anything about CFS patients'
    0:45:00
    The most important thing Dr Enlander did was hand Howard a piece of paper with an email address of a patient in Texas - Howard contacted her and they searched online for treatment modalities
    0:46:00
    She would track down the doctor using the protocol and get that info back to his doctor - the doctor would sit on it for 6 months, then burp it back up as his own idea and then prescribe it
    0:47:00
    By experimenting, eventually Howard figured out what worked and that's why he was able to get out of bed in 2003 and resume a normal life - each day he does 1220 pseudo push ups each day, they are closer to planking
    0:48:00
    Howard also walks 5 miles a day, that is huge for 76 years old - and he's stronger in many ways than when he was 19 - he feels stronger and better then ever in his life, and is free of the clinical depression
    0:49:00
    Howard thinks it may be the gabapentin as it has shown antidepressant qualities - with CFS you have to be aware of your energy boundaries and do not cross them or you are fucked
    0:50:00
    Howard took a chance and was the key note speaker at a conference - Howard has a theoretical physics colleague in Moscow, and the 2 of them had been invited to address an audience of quantum phsycicists in Moscow - quantum physics is Howard, it would be like a home coming, there was no way he was going to miss it
    0:51:00
    Howard flew to Germany to catch another plane to Moscow - half way through the flight he started to experience CFS symptoms, by the time the plane landed, he was in bad shape - he could only lie down in the infirmary if he gave up his passport, very scary
    0:52:00
    Howard was so sick and desperate, he gave them his passport - then Howard realized he forgot to take his afternoon medicines - to took his gabapentin and 15 minutes later all his symptoms disappeared
    0:53:00
    That was in 2005 and the last time Howard had a relapse, he learned his lesson - he carries gabapentin with always - Howard says it is possible to overcome CFS, he started taking them in 1998, and it took 5 years for the drugs to accumulatively work
    0:54:00
    Howard tried to tell the medical establishment about his recovery and regime - but Howard says the last thing in the world he wants to write about is CFS, he's out of those woods, out of that nightmare, he doesn't want to go back
    0:55:00
    Although Howard been published in 12 different fields, he has no desire to research CFS - his goal is to cover many disciplines and to see the big picture, that's his task in life, that's his job
    0:56:00
    Howard says Dr Enlander was one of the doctors who popularized the term myaglic encephalomyelitis (ME) - Scott says his energy is flagging due to ME and explains how there is no equivalency between ME and HIV (if you get HIV meds)
    0:57:00
    JB (he connected Howard and Scott) wanted to know about your sleep regime - Howard says sleep was very important, one of the things that got him healthy - he had insomnia since he was 13 years old, but it got worse with the CFS - then he did a perceptual flip: instead of trying to make his body his sleep for 8 hours according to societal construct - Howard decided to 'listen to my fucking body' - he now sleeps in 2 four hour sleeps
    0:58:00
    He sleeps as soon as his head hits the pillow, so it turns out listening to his body is good - and if it wants 2 doses of 4 hours, so be it, and fuck the norm - he sets an alarm to wake him up
    0:59:00
    Howard has also adjusted his sleep pattern to communicate easier with his girlfriend in South Africa - Howard is 75 years old but he is not old, 'fuck that'
    1:00:00
    Founder of The Cars rock band, Ric Ocasek died about 6 months ago at the age of 75 - Howard realized that if he had of died at 75 he's never known the amazing, astonishing, ecstasy that he experiences with his girlfriend, the first time in his life - this experience is the closest to the divine he's ever experienced in his life
    1:01:00
    She's 50 years old, but Howard's previous girlfriend was 21 when they got together - so his current girlfriend is more age appropriate - Howard says, but never let age get you
    1:02:00
    Howard's new book: "Einstein, Michael Jackson and me" - its about a spiritual journey and is funny and filled with adventures and his spiritual journey in the rock and roll industry

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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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    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:  [email protected]

    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.



    1 hr 5 min
  • Howard Bloom: Einstein, Michael Jackson and ME/cfs - How Howard beat chronic fatigue syndrome

    Who is Howard Bloom? And what does he have to do with the COVID pandemic?

    It’s hard to know where to start -- Howard is a world renowned scientist, a highly regarded intellectual, an author and lecturer on wide ranging subject matter, a frank philosopher….and swears like a broken down truck driver. 

    Howard’s #1 principle of science - and seemingly his life - is “the truth at any price including the price of your life”.  Howard has written or lectured on quantum physics, evolutionary biology, neuroscience, economics, and aerospace among other scientific disciplines.  Howard has been described as "next in a lineage of seminal thinkers that includes Newton, Darwin, Einstein”.  

    Yet science-minded Howard made a huge cultural impact managing public relations for some of the world’s biggest rock stars like Michael Jackson, Prince, Bob Marley, Bette Midler, Billy Joel, and on and on the list goes. Howard’s success was unparalleled and his future was wide open to possibilities….until his body failed his mind. Like mortals, Howard got sick with the flu, but instead of getting better in a few days, and unlike most others, he got worse. Much worse. Howard would spend the next 15 years practically bed bound, and 5 of those years he was so weak he couldn’t speak, and so sick he couldn’t have people in the same room.

    Howard would eventually figure out he had ME/cfs, known scientifically as myalgic encephalomyelitis, or ME -- and informally known as ‘chronic fatigue syndrome’, or CFS.  ME/cfs is a complex disease that causes chronic immune and neurological dysfunction. Like millions of other people who never recovered from the flu or a viral or bacterial infection, and developed ME/cfs, Howard’s life - and his hope and dreams - would never be the same.

    It is well known in the medical community that some people never recover from viral infections. Many of the 2003 SARS pandemic victims did not fully recover because they developed ME/cfs, and it is beginning to appear that many of the COVID pandemic victims will also develop chronic immune and neurological problems like ME/cfs patients. The world may be facing millions more people who never recover from COVID and develop ME/cfs like Howard.

    In this interview, Howard shares his remarkable life, with all its highest of highs, and lowest of lows -- and tales of some of the famous people who intersected his journey through the world of rock and roll, and notable thinkers also immersed in the messy business of scientific discovery. 

    Perhaps as unusual as his life, Howard has made a very rare and full recovery from ME/cfs by maintaining a regimen of drugs to keep his body and mind working hard -- and to find the truth at any cost.

    Here is part 1 of my interview with the engrossing and sublime scientist Howard Bloom, author of the newly released book “Einstein, Michael Jackson and me”....

    SHOW NOTES

    0:07:00
    Howard Bloom says childhood was a nightmare - he grew up in Buffalo, New York, and that's a nightmare - a very pretty city, wonderful Victorian architecture with big and front lawns - but his family didn't get to that status until he was 9 years old - Howard says that for someone born with a disability of being intellectual and probably bring on the autism spectrum
    0:08:00
    a term that didn't exist in those days, it was a very lonely place - Howard was born in 1943, the year of the Holocaust - his father has started a small liquor store in an attempt to make a living, he was 33 years old and was drafted and sent to California - so Howard grew up without a father - his mother had to immediately take over the liquor store and abandon her maternal role
    0:09:00
    Howard felt like he grew up without a mother as well - his mother was incredible competent, but not good at intimate relationships - so she hired a cleaning woman, not a baby sitter - to keep him out of the way, the cleaning women would lock him in a small corridor
    0:10:00
    That was how Howard spent the first 3 years of his life - once his Dad came back, Howard was ecstatic, for the first time in his life he's have a family - his parents then told him that he would be having a baby brother
    0:11:00
    Although Howard's brother was 2nd born, he was treated as the 1st child - so they parented his brother, but Howard was left in the cold - his mother was afraid of polio so she rarely let Howard out to play with other kids, but when she did, the other kids loathed Howard - when there was somebody to beat up, or chase, or humiliate, Howard was the kid
    0:12:00
    The neighbourhood kids excluded and marginalized Howard - but growing up isolated for the 1st ten years turned out to be a blessing for his future
    0:13:00
    Howard remebers in 1st grade that the 1st kid done their work would get a gold star - Howard was always last - his teacher called Howard's mother in and said 'I think your son is mentally retarded' and should be taken for psychological testing, and his mother did that but never told him the test results - one day Howard came in 2nd last, not last, and his teacher was so pleased, she gave him a gold star - so Howard was late to learn how to read and write
    0:14:00
    The house Howard was born in was very small, but his father did well from the liquor store they bought a new house, next door to a Frank Lloyd Wright designed house, with a huge backyard
    0:15:00
    It was an isolated neighbourhood, so Howard felt just as isolated as before - but their neighbour were a man and woman who were radiologists with advanced degrees - one day the woman said, 'my kids are away at summer camp, come to my reading room and see my books' - she had all 38 Oz books, and Howard read them all that summer - this was his introduction to a virtual world of reading
    0:16:00
    By 4th grade Howard was reading 2 books a day, one under his desk, so he was not paying attention to the teacher at all
    0:17:00
    Howard's father worked long hours, while his mother worked at becoming influential in Jewish society and education so she would hang out with college educated people, who she resented because she didn't get to go to college, so there was no time for Howard - whereas his parents dotted, hovered and did all the things you'd expect a parent to do
    0:18:00
    When Howard was in the Boy Scouts he tried very hard to win medals by completing tasks and then getting a parent to sign a piece of paper, but Howard could not get his parents to sign - when Howard's brother started Boy Scout's their mother became a Den Mother
    0:19:00
    This has worked to Howard's advantage - Howard can not look at things in the normal way, and he doesn't want to - when he was about 10 years old he found another book
    0:20:00
    He'd never seen it before, and would never see it again - the first 2 things it said were: the truth at any price, including the price of your life - and look at things as if you've never seen them before - to prove point #1, it told the story of Gallileo, but they told it all wrong - it said Gallileo would stick to his truth even if burnt at the stake - Howard says that is wrong - Gallileo told the Pope he'd retract everything he'd ever written
    0:21:00
    In exchange for house arrest - but the book did not tell it that way, but Howard needed a hero at that point -- the 2nd point was about Antonie van Leeuwenhoek, 1 of the 2 men who invented the microscope - it described Leeuwenhoek looking at swamp water and seeing 'animalcules' and writing to the Royal Society
    0:22:00
    Look for things that are invisible to you and all those around you and bring them into the light -- those 2 rules grabbed Howard, it was his religion, and he's dedicated his life to it - but not conventional science - he's a professional outsider, to see things others don't, to ask questions that would not occur to others - that's his fucking job
    0:23:00
    Howard read Jack Kerouac's On The Road, and reading about the Beatniks in Time Magazine - Howard and his best friend would Time cover to cover and they tied in the magazines current events competition every year
    0:24:00
    Every issue there was a story obout the Beatniks - Howard thought that if he could get close to the Beatniks, he would be accepted - the his father made a hideous mistake: for summer vacation he took them on a road trip to Cape Cod and Provincetown - Howard walked into the gallery in P-town and there were a bunch of Beatniks from the West Village (New York)
    0:25:00
    They grabbed onto Howard and treated him like another adult - so he spent the week with them and bought a pair sandals - when he got back to Buffalo, his French teacher was so scared of him and his sandals, she put him in a walk in closet - Howard started reading about Zen and wanted to drop out of high school, getting a motorcycle and go to California - but his parents threatened to send him to lumberjack camp
    0:26:00
    The last thing Howard wanted was to be around a bunch of macho men - Howard got in to Reed College, same as Steve Jobs, but Howard dropped out 6 weeks before the end of the year - as he was hitchhiking and riding the rails, a group of people gathered around Howard - Time and other magazines gave that movement a name, the Hippie Movement, so Howard, with others, accidentally started the Hippie Movement
    0:27:00
    Howard went to Israel for a year to live on a Kibbutz - his father thought it would make a man out of him - Howard went back to NY University - but when Howard was 10 years old, his mother took him to meet the head of Buffalo University graduate physics department and were in his office for an hour - as they were leaving, the proffessor put his hand on Howard's shoulder and told his mother that she didn't have to save to pay for college, Howard would get a scholarship to any college he wanted in theoretical physics
    0:28:00
    They had been interpreting the effect of the doppler shift and its implactions for Big Bang, the hot topic in physics at the time - indeed, Howard had 4 fellowships when he finished NYU, but in a field that had not been named yet, neuroscience - he got Columbia U to allow him to take any medical courses he wanted so he could piece together his own education program - but at 12 years old Howard realized what fascinated him was mass human passion, he called it 'the gods inside of us'
    0:29:00
    Howard realized that if he went to Grad school, it would be Aushwitz for the mind - so he dropped out, and went into something he knew little about: popular culture -- Howard pivoted because the Poet in Residence told Howard...
    0:30:00
    ...last year I asked you to be on the editorial board of the school literary magazine and you didn't even show up, this year I'm telling you that you are the Editor - Howard was distressed, he hated literary magazines, the typeface was terrible, colors awful - you could stop an orgy by throwong a literary magazine in it
    0:31:00
    A friend asked him: if you could do anything with this magazine, what would it be? Howard said it would be a picture book - so he gathered a team of visual artists and poets to create an issue Washington Square Review in a 12 x 12 inch format with full color printing
    0:32:00
    Howard was called into a meeting about the cost of the magazine and they said we're doubling your budget for the next issue - the 2nd issue was the Sex and Death issue, but half the staff quit - when it was published, Howard got calls from Look Magazine and others including Boy's LIfe...
    0:33:00
    ...the Boy Scout magazine - Howard had been kicked out of the Boy Scout's for incompetence in Morse Code when he was 11 -- Howard spent 2 weeks in a mental institution because the day after he attended his only rock and roll concert, he had tried to kill himself
    0:34:00
    For 4 years, school had given Howard structure and purpose - his 1st semester he got 4 As and 1 B, and he was humiliated to get a B -- in his 2nd semester he also got 4 As and 1 B
    0:35:00
    Howard created learning techniques, and he got straight As every semester after that - but when he school ended he had no purpose, no goal - Howard thinks he was depressed since he was 5 years old - every second of every day was a living hell, a torture and work was his escape - he learned to be a workaholic when he was 14 years old - when school ended, he fell into his deep depression
    0:36:00
    He knew what he'd be doing in September, but had no structure for the summer - he sat staring at a big bottle of valium and that was as far as he got in his suicide attempt
    0:37:00
    Howard's wife called Howard's uncle, a doctor, and they had Howard committed to a mental institution - when he got out, he went to visit one of his artists, but found him, his wife and their son in an empty apartment, crying - they were broke and about to be evicted
    0:38:00
    Howard told him he was a great artist and that if Howard showed his artwork they could both make money - after 2 weeks of trying to see art, he'd accomplished nothing
    0:39:00
    Howards' wife's 1st husband was a student too - she let Howard know she was sick and tired of students as husbands and Howard would lose her if he continued
    0:40:00
    Howard did not want to lose his wife - remember, Howard started out at 10 interested in astrophysics and microbiology - at 12 he built his first Boolean Algebra machine - at 16 he worked at the world's largest cancer research facility
    0:41:00
    Howard developed a theory about the beginning and end of the universe that he later discarded, but it did predict something that came true 38 years later: dark energy - but at 12-13 years old Howard discovered one of his real passions was for 'the gods inside us' - to find the ecstactic experience and how it relates to history
    0:42:00
    Howard felt like psychologist William James's 1902 book, The Varities of Religious Experience', was written for him - a calling to continue James's work
    0:43:00
    Howard was in pursuit of the ecstatic experience - that was never going to happen at Grad School
    0:44:00
    So in September, instead of returning to school, he immersed himself in something he knew nothing about: popular culture - it was an opportunity to go 'into the field' and it was an obligation of Howard's as a science person
    0:45:00
    Science is dedicating yourself to exploring - particpant/observor science, like Margaret Meade immersing herself in another culture
    0:46:00
    Fast forward in Howard's life, and he starts a PR (Public Relations) firm for rock and roll and popular music - he built into the largest PR firm approaching it from a science stance he learned growing up - Howard reinvented music PR
    0:47:00
    Howard took a 'truth drives out lies' approach to PR, in align with science seeking truth - Howard worked with a lot of talent and turned them into superstars
    0:48:00
    Howard says that if you find someone who can have a positive influence on humanity, you must dedicate yourself to that - when Howard was 14 yrs old, he promised his parents he would work hard if he could go to a private school - that's where he learned to work 7 days a week
    0:49:00
    Constant work was the salvation for his clinical depression - it did not cure, but buffered the pain a little bit - Howard says thanks to CFS (chronic fatigue syndrome) he no longer has depression
    0:50:00
    Howard had heard that fighter pilots are sent into battle for 2 weeks, then get 6 weeks of rest and relaxation because their 'alarm system' is on super high when they are fighting, and if you leave the alarm system on too long, they will burnout - Howard alarm system had been on 7 days a week, 52 weeks a year - he does not like rest or relaxation, it is depressing - Howard worked for 8 years without a vacation, but arranged a 2 week vacation in Los Angeles
    0:51:00
    In his 30s, Howard knew his body would refuse to work unrelentlessly hard - he didn't know what form that would take, but knew it would prevent him from working so prepared to live with that - Howard and his wife lived like church mice, but took all their money and invested it in real estate
    0:52:00
    So the property would earn a living if Howard was too weak to work - but on March 10, 1988, Howard flew to a meeting with new clients, to meet them in their own environment
    0:53:00
    In spite of anticipating his body was going to break down, Howard did not let up on his workaholic ways - his 1st prinicple is the truth at any price, including the price of your life - so Howard flew to this meeting and was met at the airport and taken to Linda and Cecil's home
    0:54:00
    Their home was new, built like an aircraft carrier, it was unfinished, on top of a hill, surrounded by sheep - because it was March 10th, it was cold and there was no heating or furniture, so they sat on the floor for the next 5-6 hours - then got back into the jeep and 5 hours drive back to the airport - something uncharacteristic happend when he left the plane: he forgot his laptop - the next day it was obvious he was coming down a cold, so he did what he always did: work hard, walk 2.5 miles, carry on -- he was a bit sicker the next day (Sunday), but did his 2.5 miles walk
    0:55:00
    Howard can't even remember being at work on Monday - about noon on Tuesday he told his colleagues they had to get him out of the office immediately because soon he'd be too weak to walk upstairs - his staff literally dragged him to the car to take him home - he doesn't know how he made it upstairs to his 4th floor apartment because he was so weak - Howard was too sick to leave his bedroom for 3 months
    0:56:00
    Howard felt like his circuit boards had been pulled out - until all he could was stare at the ceiling - but he was blissfully content because he didn't have the energy to be depressed, or the energy to be unfulfilled or driven - Howard's wife got their daughter's friend to care give and Howard spent 3 months watching movies - often too weak to think and too weak to speak ---- PART 2 COMING NEXT WEEK ------

    Connect with Howard Bloom: howardbloom.net

    Facebook:  https://www.facebook.com/howard.bloom 

     

    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:  [email protected] 

     

    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:  [email protected]

    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.



    58 min
  • Tracey Wilson: Surgeon leaves 42 inch wire curled up in her heart: When a ‘never event’ happens.

    When I connected with Tracey Wilson about her experience with medical error and she told me that a surgeon had unknowingly left a piece of wire in her heart, I squirmed a wee bit at the thought of it, and imagined the wire was maybe an inch long.

    Then Tracey sent me a picture of her holding the wire, her arms were outstretched on either side of her, gripping a wire that measured 42 inches in length. After I picked my jaw up off the floor, I knew I had to interview Tracey to find out how this happened and how she managed to survive what is called in the health care sector as a ‘never event’, as in ‘it never should have happened’.

    As it turns out, Tracey’s medical error experience of having a long piece of wire accidentally left curled up in her heart, was not a one-off event. As surgeons tried to remove a piece of the wire, they messed up some of her lymph nodes giving Tracey nasty side effects. 

    Then they tried to correct that error, and triggered lymphedema and now Tracey’s legs have lymph fluid pooling in them, causing swelling, loss of mobility and pain.

    As Tracey says, ‘it has been a series of catastrophic events’.

    SHOW NOTES:

     
    ***Disclaimer: Settlement of a medical malpractice case in West Virginia is NOT an admission of guilt. West Virginia is a 'no fault settlement' state.***
    0:05:00
    Tracey grew up in Bucks County, Pennsylvania - in a small town called Sellersville - everybody knew everybody and Tracey's family had been there for generations - Tracey says she had an average childhood, but spent some time in foster care, but for the most part of fairly happy kid - Tracey did not like school, she had buck teeth and kids were cruel - she was pretty much a loner, but loved art
    0:06:00
    Tracey went to college, it took her 7 years to graduate, but she was determined - her mother raised 3 kids on welfare and Tracey did not want to fall into that trap - she wanted to make something of her life - she went to college for biological sciences so she could pursue animal husbandry
    0:07:00
    In 2016 Tracey started to have fainting spells - one of the while she was driving - she was hospitalized for 5 days for testing - her primary care doctor said he was sending Tracey to a cardiologist to be assessed for vasovagal syncope and bradychardia
    0:08:00
    Bradycardia is an exceptionally slow heart beat and it will cause low blood pressure - vasovagal syncope is a malfunction of the vagus nerve - 2 symptoms are: fainting as the sight of blood, and narcolepsy - they are triggers that cause loss of consciousness - so figuring out the trigger is important
    0:09:00
    Tracey was sent to cardiologist Dr Demede - Tracey had been wearing a Holter monitor that constantly recorded her heart function and the doctor could download the activity - during this Tracey was on a medication called purolo, a medication to control heart beat, but it made Tracey heart stop for 2.3 seconds - Tracey was asleep and did not notice, but the next day she got a frantic phone call to come immediately to the hospital - Dr Demede was pushing hard to put a pacemaker in
    0:10:00
    But one of his colleagues thought the heart stopping maybe due to the medication - so they took Tracey off the medication and monitored her heart - it turns out it was probably the medication that made her heart stop - Tracey was against a pacemaker because it represented that her heart was not able to do its job - but it didn't explain her fainting spells
    0:11:00
    They did some other tests, but Dr Demede was very determined that a pacemaker was the solution - Tracey spent a year resisting a pacemaker - she was fitted with an internal heart monitor in her chest that monitored her at all times, it had a constant upload - it would perhaps show what Tracey's heart problem was about
    0:12:00
    About 1.5 weeks later Tracey started to feel very, very tired - she called the doctor's office and asked them to check her heart monitor results - they immediately called her back and told her to come into the office right away - when she got there, the doctor showed her the EKG read out and said 'if you don't get a pacemaker now you are going to die' - at the time Tracey's son was having health problems and she couldn't resist the doctor any more - so they scheduled a surgery to implant a pacemeker in June 2017
    0:13:00
    Tracey wasn't feeling any better after the operation - she had a friend who was on his 2nd pacemaker, and she compared notes with him - Tracey was actually feeling more tired and weaker, and that not what had been the experience of other patients receiving pacemakers, and by Dr Demede said she'd feel a lot better
    0:14:00
    Tracey had been told she would feel like she was running on an 8 cylinder engine after the operation - but Tracey had complications - a few days after surgery she was throwing up blood and had to go to the ER - she also had several infections at the incision point and that needed draining - during all this Dr Demede did not seem concerned, he was placating Tracey
    0:15:00
    After about 2.5 months Tracey was sick and tired of feeling sick and tired, and felt like Dr Demede wasn't listening to her - she asked for all her medical records so she could get a 2nd opinion - she went to her friend's electrophysiologist, they are cardiologist with extra training in these types of devices - Dr Levin at the University of Virginia - Tracey was in a lot of right side pain and an ambulance had to transfer her to the meeting
    0:16:00
    Dr Levin reviewed her medical file told Tracey 2 things: one -- you don't need a pacemaker, there is nothing in your medical records to indicate you need it --- and two, you've got vasovagal syncope --- so Tracey had 2 needless operations to implant devices attached to her heart
    0:17:00
    Dr Levin did a tilt table test on Tracey to determine if she had vasovagal syncope - they strap you onto a steel table and tilt the table to try to trick the brain into duplicating the same symptoms - Tracey got very dizzy and almost vomited, so she was positive for vasovagal syncope
    0:18:00
    From her medical records, it doesn't look like Dr Demede ran any tests that would determine vasovagal syncope - Tracey went to look for a lawyer - Dr Levine could operate to take out the pacemaker and heart monitor - that was set for early December 2017
    0:19:00
    But Tracey was sick with a bad sinus infection and they couldn't operate that day - so they re-scheduled to March, but it would be by a different doctor - so Tracey ended up at the University of Virginia - they had a theory that one of the leads in the pacemaker was broken, and that's why Tracey had pain because it was periodically shocking her, and it felt like a baby was kicking her
    0:20:00
    Waiting for the surgery, Tracey contiued to experience fatigue and intermittent shooting pain in her right side - in prepping for the surgery, they did a CT scan
    0:21:00
    They saw something they did not expect - during the pacemaker surgery, they use an instrument called a guide wire, it is to place the leads on the pacemaker - it has a handle and a long snakey wire, called a J-tip guide wire - sometime during that pacemaker surgery, the wire broke and was left tangled up in Tracey's heart and down her right side to her kidney
    0:22:00
    As best as they can determine, when the wire broke, it followed the blood flow to get tangled in her heart with the end entering her right kidney vein
    0:23:00
    It looped through her tricuspid valve in her heart and caused damage and had to be repaired - first Tracey's husband got a call to let him know what they found as Tracey was in a meeting with the anaesthesiologist - when Tracey saw her husband he was 'white as a sheet'
    0:24:00
    Tracey's husband pulled her out of the meeting to 'talk to you right now' - he told Tracey but it did not make sense to her, she thought she was being 'punked', somebody was playing an elaborate joke on her - it is still hard for her to understand how something like this could have happened - yes, she felt vindicated in why she had felt so sick
    0:25:00
    Tracey then had to have 2 surgeries - one to remove the pacemaker and the heart monitor, and another to remove the wire - but back in November when Tracey was having back pain and a neurologist had done some x-rays - the radiologist had seen the lower part of the wire
    0:26:00
    The radiologist sent the scans and a note to Tracey's primary doctor saying there was a wire in Tracey - the doctor did a few non-specific x-rays but concluded it was a defect in the x-ray machine
    0:27:00
    Because the wire had rubbed against the inside of her heart, it had healed into her heart and would have to be cut out - Dr Teeman of University of Virginia actually did the surgery - they were able to get most of the wire out and repair the heart wall damage with a plastic device called ring angioplasty to support the heart and prevent it from leaking so badly
    0:28:00
    They did the operation by going in through Tracey's ribs on her side, deflated her right lung, and accessed her heart - it was to cut down on the risk of infection, but it didn't - within a week Tracey was back in surgery to clean out the infection and start over
    0:29:00
    Because of that she was on heavy duty antibiotics and kept in the hospital for nearly 2 months - but they couldn't remove the bottom 3 inches of the wire, because Tracey would start bleeding heavily - so they sutured into the wall of the vein and left there - any time you have metal in the body, there will be particulate shedding
    0:30:00
    The guide wire was never intended to be left in the body, so she's still trying to find out exactly what it is made of - so its toxicity is unknown
    0:31:00
    Like other states, West Virginia has a cap on the amount a harmed patient can receive in a medical malpractice suit of $250,000 - or $500,000 if the injury is catastrophic
    0:32:00
    Tracey says the law around medical malpractice is a problem - there is no way for the public to be aware of the specifics of a doctors past errors - someone had found Tracey's lawsuit and posted the facts publicly
    0:33:00
    So any one who googles the doctors name will see that info as well - Tracey is still angry against the state because there is almost nothing from preventing this happening again - there is no accountability or assurance steps will be taken by the hospital - there is the state Board, but they take all kinds of medical complaints, not just 'never events' like Tracey's
    0:34:00
    They don't have the capacity to investigate all the medical errors, even 'catastrophic' ones like Tracey's - because the medical expenses and legal costs are so high, and the cap on settlement is so low, most lawyers in West Virginia won't take a case - the first 2 lawyers Tracey approached turned her down
    0:35:00
    When Tracey first told Scott she had a wire stuck in her heart, he imagined something 1 maybe 2 inches long - but it is actually 42 inches - Tracey arms are outstretched to show how long it is - she cannot understand how they could have forgot it - not just doctors, but others that are charged with monitoring fail safes
    0:36:00
    There were so many people that day that didn't do their job - Tracey has a deep mistrust of the medical profession - she questions everything now
    0:37:00
    But Tracey doesn't see it that way - Tracey says the anticipation of side effects from multiple medical errors is disturbing - Tracey hoped her husband comes back soon and retires and she remains relatively healthy for a long time in spite of it all
    0:38:00
    Tracey now has stage 2 lymphodema in her right leg, and starting stage 1 in her left leg - stage 3 is commonly known as elephantitis - the lymph fluid causes excess swelling and loss of mobility - and at times very painful - Tracey has had cellulitis because of it, which is life threatening - it has been a series of catastrophic events
    0:39:00
    Tracey feels like her life has prepared her for this - she has gotten used to hardships - just this past year, her son died unexpectedly of cancer and a week later her husband got deployed to Iraq - Tracey says she absorbs things and goes on - and you can't fight everything, sometimes the situation is what it is
    0:40:00
    Tracey does have days when she wants to throw things at the wall because she's so angry, but most of the time she tries not to dwell on it - Tracey's husband, a Marine, thinks she is the strongest person he's ever met
    6:52:00
    But Tracey doesn't see it that way - Tracey says the anticipation of side effects from multiple medical erros is disturbing - Tracey hoped her husbanc comes back soon and retires and she remains relatively healthy for a long time in spite of it all
    0:42:00
    Tracey is not sure when her husband will return home because of the COVID pandemic - Tracey hopes the medical system will start reporting serious medical errors, and a process in place for patients - and how can you make an informed decision if you don't have all the facts
    0:43:00
    Tracey says there needs to be a reporting agency - when she did research, there were 49 states have a reporting agency of some type that tracks the medical errors and sees that something is done - one state has nothing, it is a totally voluntary system, they are left to police themselves - that is Tracey's state, West Virginia
    0:44:00
    And that goes a way of explaining how this happened to Tracey - there is no accountability, and because there is a settlement cap, doctors know how much a settlement will cost - Tracey believes catastrophic never events she be exempt from the settlement cap
    0:45:00
    Tracey has reached out to a couple of congressman and politicians but they are involed in COVID so she doesn't expect to hear anything soon - Tracey will probably never know whey they left the wire in her body because West Virginia doensn't require an explanation - she has to make peace with it and go on with the rest of her life - Tracey plans to get a Phoenix tattoo over the scar, appropriate since she's come back
     
    Connect with Tracey Wilson: Facebook: https://www.facebook.com/tracey.wilson.315428
     
    Info on West Virginia caps and Malpractice Insurance: https://www.alllaw.com/articles/nolo/medical-malpractice/laws-west-virginia.html

    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:  [email protected] 

    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:  [email protected]

     

    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.



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

    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: [email protected]

    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:  [email protected] 

    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:  [email protected]

     

    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.



    1 hr 9 min
  • Wade Walters interview: Disability insurance’s ‘exercise therapy’ makes him more sick and disabled

    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

    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:  [email protected] 

     

    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:  [email protected]

    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.



    1 hr 3 min
  • Jim Gottstein: The Zyprexa Papers - How Big Pharma hid the harm its medication was causing people

    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
     
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    http://psychrights.org/
    http://gottsteinlaw.com/

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

     

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

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    1 hr 2 min
  • Lana Mills-Sowchuk: Paying for torture - how her father was the victim of secret CIA brainwashing experiments

    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.

    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:  [email protected] 

    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:  [email protected]

     

    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.



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

    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 [email protected]

    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:  [email protected] 

    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:  [email protected]

    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.

     

      




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

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

    Email me to learn more or book an appointment:  [email protected]

      

    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.

     



    1 hr 10 min
  • Jordan's Story: "Mom, I just want to go home." Jordan's Mom: "You killed my daughter."

    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.


    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.

    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:  [email protected] 

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    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:  [email protected]

    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.

     



    1 hr 15 min

About Medical Error Interviews

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Interviews with survivors, victims' families, policy makers, and health care workers. What went wrong? How can we make health care safer? Host Scott Simpson, uses his counselling skills to evoke the…