The Current - CBC Documentary, Not On My Watch

Episode Date: January 20, 2026

Autoimmune encephalitis is a condition that causes a person's immune system to mistakenly attack the brain. It’s rare, hard to diagnose and the consequences can be deadly. CBC’s John Chipman shares the story of an Alberta family whose lives were turned upside down by a case of autoimmune encephalitis in his new documentary.

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This is a CBC podcast. Hello, I'm Matt Galloway, and this is the current podcast. A relatively new class of brain disease has been unsettling for psychiatrists. That disease is known as autoimmune encephalitis, a condition that causes a person's immune system to mistakenly attack the brain. Its symptoms include psychosis, paranoia, mania, depression, but it is not a psychiatric disorder. It often just looks like one, making diagnosis. extremely difficult. Though rare, the consequences of a misdiagnosis are enormous. CBC producer John Chipman visited an Alberta family whose lives were turned upside down

by a case of autoimmune encephalitis. Here's John's documentary, Not on My Watch. This is, I guess, where it all started and all ended. Chris Johnson is standing outside South Health Campus in Calgary with his partner, Nora Scott, who spent more than two months in this hospital. So what kind of association you have in this place? You know, after my first hospital stay, I hate it just looking at it. I hate it coming around, this area of Calgary. I just look at it differently now.

Nora's medical odyssey began in the fall of 2017, at their home in High River, Alberta, 45 minutes south of Calgary. It didn't feel like anything was out of the normal. We were just living our lives. everything was going well and then... Suddenly, Nora started having a hard time falling asleep. I'd be up all night. It's kind of like my mind was always going.

Soon, the lack of sleep started taking a toll on her job. At the time, Nora worked in quality assurance at a local manufacturing plant. I had to come home because I couldn't focus and I couldn't do anything. But things only got worse. Stuck at home, Nora became fixed. on overhauling their house. Going through each room and throwing in a pile, things that we didn't need, or I didn't think that we needed it.

And I think I just ended up having a huge pile. To Nora, her efforts made sense. To her partner, Chris, not so much. I would come home from work and there'd be post-its all over the house, over pictures and everything, what prices on it, trying to sell things off, and just strange, strange behavior. Their daughter, Emily, was in grade six at the time. It started off as something that seemed like a slight depression.

For my mom and just like over the next few weeks, it just got progressively worse. Because she's a very calm person. And then she changed like, let's go a good concert tonight or wanting to spend a lot of money. It was just very chaotic actions. Even Nora's mother, Dot, who lives across the country in St. John's, could tell something wasn't right with her daughter. She was texting me with these crazy ideas. She was going to renovate the house and she was going on, I don't know, three or four different trips and like it was just like bizarre. Well, I thought she was having a psychotic break myself. Some mental illness or something

didn't really know what else to think. While Nora had no history, of mental illness and uncle had been diagnosed with schizophrenia. So that's what we were suspecting it was something similar. And just trying to get her to accept the help that she needed. I knew something was wrong. I just could not turn off my brain. Convincing her to get help, though, was next to impossible. But Chris came up with a plan.

There was a concert coming up, Calgary that Nora really wanted to see. I think it was Imagine Dragons. So I said, we'll go to the concert, but we have to go to the hospital after. And I remember her talking to just a receptionist at the hospital saying, oh, he thinks I'm crazy, but it's not me, it's him. She felt that everybody else was out there and she was normal. but now they picked up on it pretty quick.

Unfortunately, it was the wrong things they were picking up on. Nora was admitted here to the psychiatric ward at South Health Campus. When she was allowed out, we would do loops around the hospital. There must be lots of rabbits. Yes. Nora was admitted for 30 days. I don't think I volunteered to be a minute, but I knew I couldn't leave. It was hard at first, especially not knowing what was going on.

I never knew what to expect. She was all over the place, good one day and bad the next. She spent a lot of time in what they call sensory deprivation rooms, just a white room with nothing but a mattress on the floor. I don't know why I was in there. I do think I broke my glasses at one point because I was getting mad because I wanted to be out of there. I'd go to the hospital every day, but when I'd show up there, and she was in that room, I couldn't even see her at that point.

Do it all again the next day, work, and get the kids' supper and go back to the hospital again. Nora's mother Dot went to see her too. I went out there for two weeks, and I'd go to visit her, and she did not remember that I had been there the day before. So it was really, really strange. Nora's memory was spotty during her stay. And despite the time in isolation, she says her time in the psychiatric ward wasn't all bad.

She bonded with other patients. There's one young gentleman that was probably in his early 20s. I think he was from Brazil. And at the time, her brother was dating a girl from Brazil. So I was trying to get him to teach me phrases. I met some ladies there. We did some little art work, little crafts. I think at one point they tried to teach me the knit or crochet,

and I could never catch on to that. Chris just wanted some answers, but they were slow to arrive. But after almost 30 days, he finally got one. Nora was diagnosed with bipolar disorder. It almost seemed like they had to put a label on something to release her. Still, the diagnosis made sense to Chris. I really didn't know of anything else that it could be, so I didn't really question it. Neither did Nora's mom dot.

I basically placed all my faith in the doctors, figured that they knew what was going on, and they diagnosed it correctly. Nora, however, had a harder time with the diagnosis. I just didn't think that was me. I'm not depressive. I don't think I've had any episodes before that I would think. fell under that bipolar category. Chris says he did notice that Nora had other symptoms that didn't appear to be psychiatric. She couldn't move. She was pretty much comatose. I asked if it was the drugs.

And they said, no, she wasn't on any extra drugs or anything like that. Chris says sometimes it got so bad that Nora had to be strapped to a chair. Just to hold her up from being slouched over. It's like she was in another world. There was even times they called me at work and asked if she knew other languages because she was speaking in tongues. But after a month on the psychiatric ward,

Nora was released. Chris was nervous about her coming home. Didn't know when it was going to happen again. You didn't really want to take vacations or go anywhere because she could get ill at any time. But the medication the psychiatrist prescribed Nora seemed to be working. slowly she came back to herself. Everything went back to normal, back to her regular lives.

And that was it. Were you worried all that you're like, wow, I really hope that it's better than that again? No. Like you felt like... It's done. It's over. Sadly, for Nora and her family, it wasn't. Fast forward almost four years to November 2021. I just remember being at work.

just staring into space, like just a spot on my desk, just staring there. I could have been doing it for hours. Something was not right. Her boss called me at work, saying that I had to go to the hospital because they had to call the ambulance. She was in her office.

Didn't know where she was or who she was or what she was doing. Nora's memory was fuzzy during her first incident. For the second one, She doesn't remember anything. Went to sleep one day. It was in the High River Hospital and woke up and it was January. So I lost over a month of time. I don't remember.

Nora was transferred back to Calgary, this time landing at Rocky View General Hospital. Her condition worsened much faster this time. Her medical team wanted to take more drastic measures. Her first psychiatrist talked me into a literal convulsive therapy, so shock therapy. so shock therapy. ECT is considered an effective treatment for mental disorders by the medical community. They tried it a couple times and there was no effect at all. They gave up on that.

And then, suddenly, a breakthrough. The big thing came when that psychiatrist went on holidays and another psychiatrist came in. It was December. Christmas was just around the corner. And she wanted to do more testing because things. didn't seem right to her. So I said, sure, or anything at this point. And it didn't take long after that. The test confirmed this new doctor's suspicions. Nora did not have bipolar disorder. She didn't have a psychiatric condition at all. She had something called anti-NMDA receptor encephalitis. First thing I asked, the doctor, is this good or bad? Because I didn't know

it sounded bad. The name of it sounds bad. But she said, no, it's a good. thing, it's treatable, mostly treatable. The doctor explained that it was rare, but after treatment, Nora should be fine. It was, geez, I don't know. I caught it a Christmas miracle. Anti-NMDA receptor encephalitis is an autoimmune condition. Where the body's own infection fighting systems or immune system becomes hyper reactive or hyperactive and actually begins targeting or attacking parts of the body itself.

That's Dr. Chris Hahn, a neurologist at the coming school of medicine at the University of Calgary, and a member of Nora's current medical team. So is Dr. Aaron Mackey, a neuropsychiatrist, also based in Calgary. So an encephalitis is essentially an inflammation that's occurring in the brain. Neither Dr. Mackey nor Dr. Hahn was involved in Nora's initial care. The autoimmune encephalitis was attacking parts of her brain that affect mood and perception, in a sense, mimicking a mental disorder. It's pretty rare, affecting about one in 200,000 people. However, the key distinction about anti-NMDA receptor encephalitis is that it is an organic brain disease. Diseases where there's something wrong with the structure of the brain itself or the nerve cells

or the connections of the nerve cells. This ascent isn't for everyone. You need grit to climb this high this often. You've got to be an underdog that always over delivers. You've got to be 6,500 hospital staff, 1,000 doctors, all doing so much with so little. You've got to be Scarborough. Defined by our uphill battle and always striving towards new heights.

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adapted to your projects. Discover how at BDC.ca slash financing. BDC, financing, advising, no-how. Whereas psychiatric disorders like bipolar or schizophrenia are non-organic. Something where the structure was thought to be okay, but there's an issue with the function or with psychosocial factors that affect the function of the brain or coping mechanisms that needed a different approach to management. Before Nora's new diagnosis, hospital staff were prepping Chris for his new reality.

I mean, they had me meeting with social workers and everything telling me that my life would change forever and she couldn't be left home alone and not trusted with any bills or cards or anything. Just telling you that your life is from this point on completely different. But with the second diagnosis, it all totally changed. Anti-NMDA receptor encephalitis can be treated. Once she was on the right medication, Nora would get better. It was almost a day, and it was total difference. You could see her coming back.

That's not to suggest Nora's road back has been easy. After a month in the psychiatric ward at Rocky View Hospital, she was transferred back to South Health Campus, where she spent another six weeks, but this time at its neurology clinic, where doctors Hahn and Mackey both work. And then a year's long recovery at home and a long stint off work.

Norah still struggles to process what she's been through. It's just the loss that I had because, you know, I came home from hospital and they still had Christmas decorations up and all my Christmas gifts were in a corner. I didn't get to see anybody over Christmas. And I missed over two years of work. It was hard to deal with.

And it still is hard. Chris is thankful for the proper diagnosis. He just wishes it hadn't been preceded by four years living with an improper one. It was pretty unnerving. If we got it earlier, it would have solved so much, so much trouble and so much heartbreak and everything. Nora doesn't know who her first psychiatrist was. I tried repeatedly to find out but wasn't successful. Her second one declined an interview request.

Recovery Alberta is the government agency responsible for mental health care in the province. In a statement, it acknowledged autoimmune encephalitis is a complex condition that can be challenging to diagnose, but added that, quote, clinicians in Alberta have access to provincial clinical guidance and specialist consultation to support the assessment and diagnosis of complex conditions, including autoimmune encephalitis. It added that it wouldn't be appropriate to comment on or revisit individual patient care or earlier clinical decisions. There's zero criticism here. Dr. Hahn emphasizes he's not faulting anyone. Autoimmune encephalitis is notoriously difficult to diagnose. All of the

psychiatrist involved in Nora's care recognized her symptoms were unusual for bipolar. She was confused, which is not typical for the disorder, and her depression was resistant to treatment. She had electroconvulsive therapy and it didn't help. She began developing other symptoms. Like the loss of bodily control, Chris saw, which required Nora to be tied to a chair to stay upright. These are all unusual features. And I think part of the challenge is she had been given this label of bipolar. polar disorder. Something everyone is guilty of in medicine is what's called anchoring bias. So you have a patient who comes with a label, it's really hard for us to reframe our brains and think outside of that label, especially when the majority of the symptoms fit that label.

Plus, she got better while taking psychiatric medication. But Dr. Mackey says that in Nora's case, her improvement was deceiving. There's always a risk as physicians that we, commit something that we call a fundamental attribution error, which is that I attribute your improvement to my intervention. And in a parallel universe, she would have likely improved without that medication. It's just very coincidental that it happened around the same time. But perhaps the biggest stumbling block to the right diagnosis was that Nora had survived her first encephalitis four years earlier. Without proper diagnosis and treatment, most people wouldn't have. If we don't catch it, it can result in death in most instances.

And then rarely, and was the case for Nora, the immune system takes a bit of a break from the attack. And so we get a remission from those symptoms. Dr. Hahn says Nora's first two psychiatrists did order lab tests to explore other possible causes of her non-psychiatric symptoms. But the specific tests they chose and how they interpreted the results didn't lead to the proper diagnosis. This rare autoimmune condition, anti-NMDA receptor encephalitis, was first identified in 2007. Dr. Mackey says it led to a wave of panicked reassessments. The natural question we had was, do we have a lot of patients who have mental health conditions that, in fact, have an autoimmune encephalitis?

And so there was an initial big surge to test everybody or probably over-test. Many of us chased down, some of it turned out to be false positives. And false positive test results come with their own challenges. They often create false hope for patients who do have a psychiatric disorder. There's still, unfortunately, a stigma around mental health conditions. And then you read about autoimmune encephalitis, hey, this is a condition that's treatable or sometimes curable. And there are labs will do this testing in a fashion that is not up to standard,

and people will get false positives. And then you do the local testing with an accredited lab, and it comes back negative, but it's very hard at that point often to take away that diagnosis, right? Because there's a lot of hope that comes with that. And it's always challenging for someone to hear that actually what they thought was maybe curable is not. Dr. Hahn says these days, misdiagnosis is rare. He estimates that less than 5% of psychiatric disorders end up being an autoimmune encephalitis. But all these challenges and diagnosis led Dr. Hahn to spearhead efforts to develop a set of national guidelines

to help identify autoimmune encephalitis properly. They were published in 2024. For Nora Scott, her lingering questions always come back to the psychiatrist who stepped in and made the right diagnosis. I don't remember any of this. Have you ever had a conversation? Have you ever talked with her? No.

I didn't know who she was until recently. Do you never want to talk to her? Of course. She saved me. The psychiatrist's name is Dr. Jada Johnson. I'm going to be talking with Dr. Johnson. Oh, are you? Yeah, like, would you like to join us?

I think I would. I don't know where I would be now. A few weeks later, after I'm back in Toronto, I arranged a virtual call for the three of us. I connected with Nora first. Hey, Nora, can you hear me? I can, yes. How are you doing?

Very nervous. Okay, there she is. Okay. Dr. Johnson has since relocated to Revelstoke, BC. Here we go. Hello. Hi, how are you? I'm good, thanks.

It's such an honor to be here. Chris has talked so much about you. That's my husband and everything that you did for me in a hospital and just seeing you right now. It makes me appreciate everything that you did. Honestly, like, it's why I became a doctor. Like, it's not often you get to, like, see someone after and see how well they're doing. The last time I saw you, I thought you were going to die when I met you for the first time.

The question that I have, if you don't mind, is how did you know that it was not a bipolar manic episode? You didn't look manic. I feel like when people are psychiatrically unwell, you can still like connect with them through eye contact. And I felt like when I looked at you, Nora, before it was almost like you're not there.

And I can honestly say that I did it for your kids. I heard that you had two kids at home. And I was just like, I can't in good conscience have you get sicker on my watch. Dr. Johnson had only been a practicing psychiatrist for two years at the time. I can remember that day hearing about your case and thinking, that's an odd psych case. And I suggested that neurology see you, that I thought it was an MDA receptor encephalitis.

But Dr. Johnson says the neurology department ruled that diagnosis out. So I kind of left it and then when I covered the unit for Christmas that week, the head nurse came to me and just said how sick you were and I needed to fix you. Dr. Johnson had to make a decision. How far was she willing to push it? She called the neurology unit again. Didn't feel good to go back and say, I really think it's this and be told like essentially you're a junior idiot, like go away. but I think I have a healthy dose of not caring what people think there is a lot of hierarchy in medicine and I didn't grow up privileged like my parents weren't doctors I grew up pretty poor myself so I think I've always kind of felt like an outsider in medicine so maybe the hierarchy is a little bit less relevant to me because I'm like I'm just happy to be here practicing medicine

and doing what I do. Dr. Johnson didn't let it go. She took Nora's blood herself and insisted the lab immediately test it for anti-NMDA receptor encephalitis. The results came back positive. A second, even more reliable spinal fluid test confirmed it as well.

Yeah, I guess I was willing to be an idiot and have people look down on me. And in this case, it meant that you got to go home to your kids, so that makes it all worthwhile to me. And, hey, not being wrong in that case was nice too. Dr. Johnson says Nora's case wasn't just profound for Nora and her family. It also reinforced what kind of doctor she wanted she needed to be. I think it's really easy as a physician or as like a human being in general to just kind of like go along to get along with others.

And Nora's case just taught me that like if I was too afraid to like disrupt the status quo, then you might not be around. And yeah, I think that's like a nice way of saying what my mom calls me. My mom says I'm a bit of a pit bull. Like if I think it matters and it's important for a patient, I will advocate to the very end for it. I just really appreciate you sharing all this information with us. I don't know a lot about what happens.

Yeah, I can imagine. My biggest thing is I just wanted to say thank you. You're most welcome. I just think of it as like the most beautiful gift I could give to someone. That documentary, Not On My Watch, was produced by John Chippman from the CBC's audio documentary unit. You've been listening to the current podcast. My name is Matt Galloway. Thanks for listening. I'll talk to you soon. For more CBC podcasts, go to cbc.ca slash podcasts.