An enthusiastic greeting from a dog is the same around the world. There’s no translation needed for the blurred metronome tail, the wiggling body, the dancing paws, the eyes gazing up at you with a mixture of joy and iloveyoupleasepetmewowicantbelieveyouareHERE!
So when a black Lab named Nina gave me this kind of welcome when I entered her house in Zagreb, Croatia, it was refreshing to be able to communicate with her. I didn’t have to keep my molims and my hvalas straight. I didn’t fret about whether I was saying “drago mi je” (“nice to meet you”) the right way or in a way that had been making the local taxi drivers smile politely and nod silently.
With Nina, I could just talk dog. Which meant, in my case, talking to her in English, supplemented with the common body language of people who love dogs: arms wide, smiling mouth open in the style of amazed babies on viral videos, eyebrows raised high. It was pointed out by my daughter when she was a mortified teenager that when I meet a happy dog, I also bobble my whole upper body from side to side.
In other words, I arrived at Nina’s house and promptly looked like an idiot.
But the human members of the Kobešćak family are as polite as my cab drivers, and they smiled broadly and nodded and ushered me in. I was relieved to find that Matea Kobešćak speaks English so well that she sounds downright Australian. She works in nautical and adventure tourism around the world and has probably met her share of boaters from the land down under. She introduced me to her mother, Sanja, a special education teacher, and her father, Zdravko, an IT consultant.
As we stood in the cheerful chartreuse kitchen, I noticed they were all glancing behind me toward the floor of the next room. I looked over my shoulder and saw a figure sitting on the floor, slumped against a wall. It was Davor Kobešćak, the man I was here to see.
“Oh no! Is he OK?”
“He had a seizure, just before you rang the bell,” Matea, his sister, explained.
Davor’s head drooped, and he was struggling to raise it. His father excused himself and knelt in front of Davor. He spoke gently to him, in words I didn’t know. In the universal language of father and ill son, you don’t need to understand the words.
I watched the scene while mindlessly giving an ear rub to Nina, who was still wagging at my side. Then something occurred to me that made me yank my hand back.
“Wait, isn’t Nina supposed to be helping Davor?”
Nina is Davor’s lifeline. She can often predict seizures, and once Davor has one, she helps him recover. Had I been preventing her from doing her job? Was Davor suffering needlessly because the Kobešćaks were too polite to tell me to keep my hands off his service dog? It hadn’t occurred to me that even without her vest, and even with her friendly greeting, she was on the job.
“No, it’s OK, she already did help,” Matea said. She explained that several minutes before I arrived, Nina had told the family that Davor was going to be having a problem. She did this by crying and whining around Davor, and then doing the same around the other family members. Even though a lifetime of seizures has caused profound neural damage in his brain, Davor still knows Nina is alerting. He understands everything, his mother says.
For Sanja, that’s the most heartbreaking part. Her son knows what is happening, but it’s hard for him to act, to move, to speak so that people outside the family understand him. She’s grateful that Nina knows what’s going on with him.
Matea told me that when Nina whined to the family before I arrived, Zdravko walked over to him and tried to guide him to the couch in the living room. They never know how much time will pass between Nina’s warning and a seizure. It could be a minute; it could be twenty minutes.
But Davor wanted to look at his father’s hand instead. He likes to study hands and the items they’re holding. He can inspect hands for a long time. He also talks about one thought, over and over. Lately he has been obsessed with a memory from childhood: a boat they were pulling on a trailer while driving to the coast. His parents and sister don’t know how it got stuck in a crevice of Davor’s mind and keeps resurfacing. But they like to hear him talk, even if the words come out slow and mangled.
Zdravko had caught Davor as he collapsed, balancing him in expert hands and using the wall to guide his son to a sitting position. Nina, who had been watching this from a few feet away, ran over to Davor and licked all around the perimeter of his face. This was tricky because Davor’s head was hanging over his chest. But she got right in there and did her job with no prompting.
Depending on the type of seizure, when Nina licks the edges of Davor’s face, especially around the jawline and ears, he often starts to come out of it. A neurologist told his parents that this acts to stimulate the vagus nerve, which helps pull him out of a seizure quickly. Some people with epilepsy have vagus nerve stimulators (VNS) implanted, but the Kobešćaks say they have a four-legged VNS with no side effects.
If Nina can get to Davor and lick his face within five to ten seconds of his collapse, she can prevent his seizure from going further. It may take him a while to recover, so she’ll let him have some time. She may go in another room, or lie on his legs, or tuck herself behind him if he needs support.
When I arrived, Nina had completed the first part of her job and was waiting for the next phase. I hadn’t prevented her from tending to Davor. But now it was time for her to get to work again.
Sanja walked toward her son and tapped her thigh. “Ninaaa,” she sang out. The dog jogged in, licked Davor gently a few times on his cheeks and on his nose, and sat facing him. Almost immediately, Davor lifted his head. He saw his dog and stared at her for several seconds. Then he leaned down and placed his hands on the floor, trying to push himself up on all fours. He couldn’t steady himself and tipped backward into a slumped sitting position again.
He looked up and saw his father’s arms extended toward him. Zdravko crouched low in front of his son, reached around him, and pulled him up, slowly, carefully, his face showing the strain, and something else: the determination to make his son as OK as he could. Once Davor was standing, his father helped him over to the couch and settled him in, telling him something gently, tenderly.
Zdravko is not a large man. But he is a strong man. He has had twenty-six years of trying to help his son fall without hurting himself, of lifting him back up after a seizure, of muscling him up the stairs to their home and acting as his brakes going down the stairs. At first it wasn’t so hard because Zdravko was younger and his son was smaller. As Davor grew and took on a bulky physique, it became more difficult for Zdravko. Really, for all of them, because anyone who is around Davor helps him. But Zdravko tends to be the foreman of the lifting crew, and he lives in pain he doesn’t like to discuss.
“It is nothing compared with what Davor has been through,” he says.
Davor had his first seizure somewhere between air-raid sirens, on November 7, 1991. He was five years old. It was a stressful time in Zagreb. The Croatian war for independence had begun earlier that year. Air-raid sirens wailed with distressing frequency.
One afternoon less than a month after the Yugoslav air force had bombed the presidential palace only three kilometers from the Kobešćak house, Davor slumped over in his chair and fell to the floor. He was briefly unconscious, and afterward it took him twenty minutes to get back to normal. Two hours later he collapsed and fell down the stairs. The family rushed him to the emergency room.
His parents say Davor was always a sensitive child. They realize the war didn’t cause his epilepsy. But they still wonder if the noise and the stress could have had some effect since stress can be a trigger for seizures—if the perfect storm of conditions within his body and outside his body converged to activate something that might have otherwise lain dormant.
He was eventually diagnosed with Lennox-Gastaut syndrome—a complex and severe form of epilepsy that usually begins in early childhood, typically at three to five years of age. Children with Lennox-Gastaut often have several types of seizures and experience them frequently.
Worst for Davor and his family are the tonic-clonic seizures (previously known as grand mal seizures). They’re not usually a common type of seizure with Lennox-Gastaut, but they’ve hit Davor hard. He loses consciousness, and if he’s standing, he’ll fall. His body goes stiff, and he convulses for a couple of minutes as his muscles tighten and relax. These seizures leave Davor depleted for hours.
What had felled him before my arrival was probably an atonic seizure, also known as a drop attack. They’re characterized by a loss of muscle tone and can involve a loss of consciousness. They’re generally brief, lasting under fifteen seconds, but Davor’s tend to last several minutes without the dog’s help. Even with Nina there to help him, it takes a while for him to pull out of it. His parents think it’s because his brain is badly damaged from so many seizures for so many years.
Sanja can tell you about almost every seizure Davor has had in the last couple of decades. She has a master’s in special education, and a few years after Davor got sick, she put on her researcher hat and started keeping journals. She has been tracking the dates, times, numbers, and every detail she can of his seizures, his medicines, his injuries from falling. She writes in script, usually in pencil. Her accounts fill twenty-one big black hardcover journals. They’re clustered on three shelves in the living room, among binders and envelopes crammed with decades of medical records. Sanja hoped that by keeping track she could spot some kind of order in the chaos, discover a pattern, find a solution, a way to get her son back from this hell.
“You must do something or you lose your mind,” she says.
It was around journal number eight that Sanja’s entries changed. The frequency of Davor’s seizures decreased. His injuries were fewer. And there was this fluffy puppy who had made her way onto the pages. Her name was Frida.* She was a black Lab they’d bought from someone who normally breeds guide dogs for the Croatian Guide Dog and Mobility Association. Sanja had asked for the organization’s help when Davor turned seventeen. The trainers, who had never trained a dog for someone with seizures, guided the family on how to encourage Frida to help Davor.
Frida proved to be a natural. Even as a pup, she ran to Davor and licked his face when he was felled by a seizure. This was without any training. To the family’s amazement, Davor would often become aware again. If he was unconscious and she got to him quickly enough, he wouldn’t descend into the abyss. It was as if the puppy was throwing a lifeline to him.
“She loved him from the beginning. She could sense he needed her, and she knew what to do,” Sanja says.
They encouraged this. They’d hand Davor a treat to give Frida when he regained consciousness. If he couldn’t manage, they’d give it to her and praise her like she’d just done the best thing in the world.
Because, of course, she had.
Frida learned other ways to decrease the length of Davor’s seizures. She’d hurry over with a toy and get in his face so he could see it. She’d paw at him. Anything to get his attention on her. If he was holding something in his hands, she might take it away.
Maybe she was just trying to get him to play with her. But the Kobešćaks think Frida knew what she was doing.
It got to the point where he would sometimes regain awareness just by hearing the tap-tap of Frida’s nails on the floor as she headed his way. Was it a conditioned response or just the distraction of his canine caretaker? His parents think it had something to do with the love Davor felt for his dog.
She was his only real friend. He attended programs outside the house and interacted with other people, but the Kobešćaks had never heard Davor call anyone a friend. When he told them, “She is my friend,” it was an emotional moment for them. It still gets them choked up to realize that Frida, a dog, was the only one who made him feel this way.
The Kobešćaks describe Frida as an emotional dog. She was highly attuned to people, and if someone looked distressed, she would run to his or her side. This would even happen with strangers. A runner leaning over with his hands on his knees at the park would get the “Frida checkup.” “She always cared how people were feeling,” says Sanja.
Frida was only two years old when she began alerting to Davor’s seizures. It wasn’t a trained alert. It was more like a concerned friend who could see something was happening and wanted to let others know. At first the Kobešćaks couldn’t figure out what was wrong. She would run around crying and whining in a desperate manner.
They quickly noticed a pattern. Usually within twenty minutes of Frida starting to cry, Davor would have a seizure. They couldn’t believe it. Maybe it was a fluke. They timed it. Again and again, the pattern held. How could she have learned this on her own? As soon as they realized the connection, they rewarded her with loving praise and little bites of food.
Before Frida joined the family, Davor had been having about 340 seizures a year, including forty-two tonic-clonic seizures. Two years later he was down to half the number of seizures. The family didn’t and still doesn’t know why. It wasn’t a change in medication. They attribute part of the remarkable decrease to Frida’s halting many of his seizures early. They’re also sure it also had something to do with Frida’s love for her young man.
“It was his feeling of being loved unconditionally by someone other than us—the feeling of safety and caring,” says Sanja. “You can’t measure empathy or love or the connection. You can just observe the results.”
Frida was so connected to Davor that when he was in his room and she was relaxing in the garden, she’d bolt inside and alert if she sensed trouble. She stayed with him until he sat or lay down, and she’d go to another family member if no one was close by. At times like this the family realized Frida was observing something other than some slight changes in Davor’s manner. It had to be a scent. And it had to be a strong enough scent that she could catch some molecules as they wafted through an open window or door.
By helping Davor, Frida took some of the load off of the family. “She brought us more laughter. She had us talking to each other and others more,” Sanja says. “We opened up about how we were feeling. She got us into the fresh air and introduced us to people with similar issues.”
Frida couldn’t detect every seizure. When Davor was having frequent seizures, she would miss some. The Kobešćaks think it had to do with the diminishment of whatever olfactory signals Frida might detect. She alerted best when the seizures were less frequent.
When Frida was eight, her health started going downhill. She had a genetic problem with her retina that was slowly causing her to go blind. She was diagnosed with a thyroid issue and was put on a couple of medications. She slept far more than normal. And her allergies were getting the better of her, causing ear infections and skin infections that were uncomfortable and difficult to eradicate.
“A situation like this—everyone, we all age faster, we wear out,” Sanja says.
Here’s how Matea explains it: “Frida loved what she did, but it took a toll on her. She absorbed everyone’s stress and Davor’s problems like a loving little sponge. She was one hundred percent dedicated to helping everyone, but we needed to give her a rest.”
Frida had walked in on puppy feet and quickly changed their lives. And now they were facing the reality anyone who has ever lost a dog has had to face: Dogs never live long enough.
They decided to try to phase her into retirement so she could enjoy a little downtime, and to get another puppy to train for Davor’s seizures. They ended up with another black Lab they got through the guide dog association. She came with the name Nina, and they thought it fit her, so they kept it.
At first the Kobešćaks were concerned that maybe Frida had been a fluke, one dog in a million. They worried that Nina wouldn’t tune into Davor’s seizures as naturally, or that she’d never learn the job.
But Frida made sure that didn’t happen. As soon as Nina arrived, she became Frida’s project. Nina watched Frida help Davor, and with encouragement from the family, she began to lick his face after seizures. She watched Frida alert, and in time, it rubbed off on her.
“Frida was a brilliant model and teacher,” Matea says. “Nina was a good student.”
The Kobešćaks showed me a heart-melting video of Nina as a fuzzy little puppy lying in the grass next to Frida. Nina watched as Frida held a stick between her paws and gnawed on it. Nina had a stick, too, and was chewing on it in the same fashion as Frida. At one point Nina got up to sniff the camera, then saw Frida steadfastly gnawing her own stick, so ran back to join her again, a miniaturized mirror image of her role model.
Frida also passed down her love of the scent of impending rain. Nina would often follow Frida to the balcony before a rain. They’d lie next to each other and wait for it. When the rain started, they’d stay until it got too wet for them. You could almost predict the weather by watching them, Sanja says.
Nina even learned an amusing sleeping style and location from Frida: upside down, near the entry to the pantry where the dog food is kept, a front paw against the tile wall, a rear paw against the cabinet for balance. Nina did this for a good hour during my visit.
Frida died at age ten in their summer home on the Adriatic coast of Croatia. Her ashes are in a little box on a shelf in the living room of their Zagreb home, close to all of Davor’s files and medical journals. Beside it is a candle and a photo of Frida as a young pup with a red Christmas ribbon around her neck.
Another photo of Frida—a large, framed, and matted black-and-white—hangs above the dining table. It’s the first thing you see when you walk in the main part of the house. The photo had been tweaked to look soft and gauzy, as you’d imagine a dog from heaven might look. Frida is gazing upward, with her head slightly tilted as if listening to someone intently.
Zdravko walks into the room and looks up at Frida’s image.
“She is always with us,” he says, and joins Sanja and me at the table.
Nina walks outside to the balcony and lies down. We drink our hot coffee and wait for the rain to fall.
Davor is one of many epileptics who have experienced a dramatic decrease in seizures thanks to a dog. A study published in 2002 in the journal Seizure followed ten people with tonic-clonic seizures for forty-eight weeks as they got paired with dogs who learned to alert to their seizures. Their overall seizure frequency dropped by 43 percent. A 1999 study by the same lead researcher described similar positive results when she and her colleagues paired six people with dogs who alerted to their seizures. (They didn’t report the percentage of decrease in this study.)
They posited that dogs who act as an early-warning system may decrease anxiety. Anxiety, they wrote, had been linked to seizures in a troubling reciprocal relationship: the more anxiety, the more seizures, and the more seizures, the more anxiety. The unpredictable nature of seizures can lead not only to anxiety but also depression. A dog who could tell someone of an oncoming seizure even just a few minutes ahead could significantly reduce anxiety and increase overall quality of life.
“Some of our subjects have told us that gaining the ability to predict their seizures has allowed them to engage in more activities than before, and has reduced some of the fear of the condition,” the authors wrote in the 2002 paper.
In their earlier study they concluded that “the reduction in seizure frequency suggests that these specially trained seizure-alert dogs may be considered as a potential and additional treatment for people with epilepsy.”
This was exciting stuff with big promise for follow-up research into the benefits of seizure-alert dogs. But you may have noticed that these are not new studies. There’s been scant research on dogs and their effect on seizures since shortly after the turn of this century. This may be partly because of three small studies that came out a little later.
In a study published in 2005 in Epilepsy & Behavior, researchers evaluated two seizure-alert dogs whose people were inpatients at an epilepsy care unit where they had constant EEG monitoring. The result: “The dogs’ performance in alerting before a seizure was poor for patient 1 and misleading for patient 2,” the authors concluded. “In our limited but objective experience, the ‘seizure dogs’ were not as effective as previously thought in predicting seizure activity.” (They did recognize that the hospital setting might affect the dogs and the patients, and called for greater numbers of patients and dogs for future research.)
Two short papers about seizure dogs published in Neurology in 2007 lent support to the negative view of seizure alerting. The researchers in the two small case studies found that dogs were sometimes alerting to psychological seizures—seizures with no evidence of a neurological basis. One takeaway was that people need better diagnoses before investing in seizure dogs because psychogenic nonepileptic seizures (PNES), also known as pseudoseizures, are often treated with psychiatric evaluation and behavior therapy—not the medicines for epileptic seizures. Another concern was that the dogs of people with PNES might actually be causing the seizures if they developed a conditioned response to “stereotypical dog behaviors.”
After these papers, with the exception of a couple of systematic reviews and a groundbreaking scent study you’ll read about later, it’s been pretty much crickets in the science-journal world.
Despite the promising early studies that reported on the dogs who were trained to alert to their people, the consensus in some circles is that dogs cannot be trained to alert to seizures in the same way dogs can be trained to alert to diabetes; that they can only be encouraged if they show signs they can tell a seizure is coming. (This is what Davor’s family did once Frida and Nina showed concern about his seizures.)
A PBS NOVA article from 2017 stated that “there is no proof that dogs can be trained to detect seizures, let alone predict their onset far enough in advance to tell humans about it.”
The Epilepsy Foundation’s website features an article entitled “Seizure-Alert Dogs—Just the Facts, Hold the Media Hype”:
“Seizure-alert dogs, save lives.” . . . while it makes for a great headline, it also makes for a grave misrepresentation of the truth. The truth is, seizure dogs can not be trained to “alert” a person of an oncoming seizure.
Don’t tell that to Bud, the black Lab who was trained to alert to Leslie Fong’s seizures before he even met her. Leslie, who lives in Santa Rosa, California, suffers from epileptic generalized seizures, including tonic-clonic seizures, as well as occasional nonepileptic seizures. Her neurologist talked to her about how seizure-alert dogs can help. She says he recommended she check out Little Angels Service Dogs in the San Diego area.
The organization, which trains several types of service dogs, doesn’t make a guarantee about dogs being able to alert to seizures. Its founders think there are certain conditions that make it harder for dogs to detect seizures ahead of time. For instance, if someone’s seizures strike quickly with no change showing on an EEG reading beforehand, that person might not be a good candidate for an alert dog. Those whose brains show precursor activity even though they may not be aware of any change could be more likely to produce signals a dog can recognize. It’s all conjecture, based on years of experience with clients and neurologists. The organization may soon be involved in a study that explores this.
Little Angels has produced twenty-eight seizure-alert dogs since it started in 2006. Most of the dogs are successful alerters. Leslie was willing to take the chance that her seizures might not elicit a response. At worst, she figured, she’d have a dog who could help her during and after the seizures.
Leslie sent Little Angels the requested samples of saliva on gauze pads and cotton, and other gauze pads swabbed on her palms. The samples needed to be collected and sealed in separate containers immediately after a variety of seizures. Since she has no warning of her seizures, her husband, an EMT who is becoming a nurse, helped her with the samples as soon as she was stable.
Down at the other end of the state, trainers at Little Angels had selected a dog they thought would have a good chance of becoming a seizure-alert dog. Bud, who was a rescue from a trainer’s neighbor who didn’t take such good care of him, was observant and focused—important qualities for a dog who’s going to be on the lookout for whatever he senses before seizures. He was highly food-motivated, and the trainers were able to teach him basic obedience skills easily.
They worked with Bud on a sequence of alerting: When a trainer said “alert,” he would go to the person standing in as the epileptic, tap her with his paw, run to another part of the room and push a life-alert button, then zip over to get an emergency pouch with medicine and bring it to the faux epileptic. He loved doing this. It was his joy—a big, fun game—and he got amply rewarded for it.
What happened next provides a fascinating look at how modern-day doctor dogs are starting to be trained.
One of the trainers in the large room quietly, subtly opened a screw-top jar containing one of the gauze pads with Leslie’s saliva. The trainer couldn’t make noise or big movements because she didn’t want the dog to associate Leslie’s “seizure scent” with the jar. Once the jar was open, another trainer put Bud through the alert sequence. The idea was that over time he would come to associate the smell of Leslie’s seizure with the need to alert.
When Bud was deemed ready, Leslie headed down to Little Angels headquarters in the hills about twenty miles east of San Diego. She would be there for two weeks of intensive training with Bud. When she arrived on the property, a trainer brought Bud out to meet her. Leslie later sent me a video of their first encounter. It shows Bud catching a whiff of her as he approaches, and even though other new people are around, she’s the one he recognizes.
“He had been smelling her saliva this whole time, and all good things came from when he smells her saliva,” says Judy McDonald, one of the trainers at Little Angels. (You’ll meet Judy again later in a very different chapter in her life.) “All the rewards and happiness were associated with her, and here she was in person.”
During their second week of training, Leslie got to take Bud back to her father’s house, where she was staying at night. On Bud’s first night with her, she was sitting on the couch and Bud walked up to her and pawed at her.
“I didn’t think anything about it,” says Leslie.
“Next thing we know, she was seizing,” says her husband, Brandon. “It was a grand mal seizure.”
Bud did the best he could to lie on her, but the shaking was too much. He put his head in her lap and kept it there after the seizure ended. Her seizure lasted about two minutes. Afterward, Brandon—dumbfounded that Bud had alerted to this seizure—gave him a delectable treat and a lot of love. When Leslie came out of the worst of the postictal state about fifteen minutes later, she realized what Bud had done. “He is the greatest gift,” she told her husband, choking back tears.
That was in 2015. Bud has been a devoted friend and caretaker ever since. He still sometimes tries to lie on Leslie during a tonic-clonic seizure, as if trying to stop it from taking hold of her, but these days he usually helps by fitting himself under her head, like a big furry brown pillow. He figured that out himself. After her seizures, he stays right next to her. Leslie often comes out of a seizure and finds Bud’s head and paws on her chest.
“It helps keep me calm until I’m more stable,” she says.
She and Brandon continue Bud’s scent-sample training to keep him in top form. He usually alerts between thirty seconds to ten minutes ahead of her seizures—tonic-clonic or otherwise. Bud even wakes up from naps to tell her she’s going to seize. He’s not perfect. He misses a seizure every once in a while. But he has helped give Leslie back the ability to do the simple things, like take a shower without fearing she’ll collapse in the tub with no warning.
Bud isn’t a fluke. I visited Little Angels and watched a yellow Lab–golden retriever mix named Dexter do the same alert training Bud had done. He also adored the game. He didn’t seem to notice when a trainer silently opened the jar labeled “Natalie.” He just kept alerting with big strides and a wagging tail.
Natalie Tapio is twenty-two and has had intractable epilepsy for the last four years. Her focal aware seizures—also called simple partial seizures—aren’t dramatic to witness. She looks like she has frozen in place for ten seconds up to three minutes. On the inside, though, she feels dread and fear. She is aware during the seizure, but can’t move. Even her eyes freeze in place, although she can blink. She feels trapped in her body. If she’s holding something, she will probably drop it. If she’s standing, she may fall. The seizures can happen at any time, typically about ten times a week. She has no warning of them.
Natalie had been sending cheek swabs and palm swabs to Little Angels from her home in Washington State. A few weeks after my visit, Dexter was ready to meet her. Natalie traveled down with her parents. They trained two hours a day together for two weeks. On the first day, she didn’t have a seizure during training. But on the second day, Dexter ran over to her and put his paw on her leg and looked at her earnestly. Everyone in the room cried—the trainers, Natalie, her parents. Could the training be working so quickly? Three minutes later, Natalie had a seizure.
I spoke with Natalie and her mother, Lisa, several months after they took Dexter home. Dexter has been “the most amazing, amazing addition to the family,” Natalie told me. He has never had a false alert, and he has missed only a few seizures, including a couple when he was sleeping, although he usually wakes up from sleep to warn Natalie.
Like many other medical alert dogs, Dexter doesn’t have to be near Natalie to foretell a problem. One time Lisa and Dexter were sitting in the waiting room at the doctor’s office while Natalie was in the examination room behind a closed door, down the hall. “We’re sitting there, and all of a sudden he looks up at me, and he looks down the hall, and he looks at me and he paws me,” Lisa said. She was stunned. Sure enough, a couple of minutes later, Natalie had a seizure in the room.
At this point it’s rare for organizations to use scent to train seizure dogs to alert. Most train dogs to be seizure-response dogs who can summon help, get medicine, and stay close to their people during and after seizures. Some of these organizations teach recipients how to recognize signs that a dog is aware of seizures before they happen.
At Canine Partners for Life, in Cochranville, Pennsylvania, trainers employ a unique way to gauge their dogs’ potential to recognize seizures before they occur. Candidate dogs each spend a few nights with one of their nearby graduates who has multiple seizures a day. He looks for any signs: barking, staring, not listening to any commands. If dogs show a propensity, trainers will work with them to bring out the alerts. “If it’s the right dog, they just have to witness a seizure a couple of times to get it,” says Tonya Guy, associate director of communications. When the client arrives at the campus for three weeks of intensive training, the alerting behavior is fine-tuned.
Even when a dog seems to have potential, trainers don’t make promises about the dog’s alerting ability. But all is not lost if the dog doesn’t prove to be an ace alerter. At the very least, the dog will be a responder—an important job. Seizure-response dogs can be life changing. A study from 2008 in Epilepsy & Behavior found that 82 percent of the twenty-two people who acquired seizure-response dogs reported “major” quality-of-life improvements, and the rest had moderate improvement.
Seizure-response dogs are in high demand. Organizations that train these dogs often have long waiting lists. Georgia-based Canine Assistants has a whopper of a waiting list: more than two hundred people for seizure-response dogs. Some of the demand may be from its partnership with the global pharmaceutical group UCB, which funds the training and lifetime costs of food and vet bills for qualified people with epilepsy. But even before UCB’s sponsorship of dogs, the organization couldn’t keep up with demand.
Canine Assistants doesn’t train its dogs to alert. “It is a natural ability of the dog that scientists still do not understand and one that cannot be trained or selected,” its FAQ page states. But the organization reports an incredible statistic that made me do a double take to see if I had misread it: 87 percent of its seizure-response dogs “go on to PREDICT or react in ADVANCE of a seizure.”
The 2008 Epilepsy & Behavior study found that 59 percent of the seizure-response dogs they followed had developed spontaneous alerting behavior. That was remarkable enough. But almost nine out of ten Canine Assistants being able to alert is a phenomenal success rate.
The percentage of pet dogs who learn to alert is far lower, but still impressive.* Not surprisingly, there’s a dearth of studies on this, but a 2003 paper in Seizure reported that of the dogs of twenty-nine epileptics, three dogs (about 10 percent) alerted their humans to seizures.
And a year later, a pediatric neurologist with Alberta Children’s Hospital at the University of Calgary reported that 15 percent of pet dogs living with epileptic children predicted their seizures. And not just every so often. These dogs reportedly alerted to 80 percent of seizures, with no false positives. “Anticipatory behaviors were never demonstrated without a subsequent seizure,” he and his colleagues wrote in the journal Neurology. The dogs usually acquired this ability within the first month with the family, after watching just one seizure.
Talk about fast learners. And the actions of these dogs were often noble and heroic. One would “forcibly sit on her toddler and not allow her to stand prior to a drop attack,” the authors wrote. One pushed a young child away from the stairs shortly before her seizure.
A family in the study had two children with seizure disorders. The dog would follow the three-year-old around the house for hours before the child had an episode, and wouldn’t eat, drink, or go to anyone else. When the eight-year-old was ten minutes from a focal aware seizure, this same dog would find her and “forcefully lie” on her. The dog seemed to know that if she wasn’t standing, she couldn’t get badly hurt.
Dogs like these not only sense trouble brewing but also act with what seems to be an understanding of the serious nature of this condition. A dog in Minneapolis embodies these qualities. Plus he has a secret weapon against seizures on his collar. I’d like to introduce you to Brody. But first, let’s meet the woman he lives for.
Terri Krake wanted to be a cop ever since she was a young girl. She liked to play army games, and later changed to cops and robbers—fake handcuffs and all. Friends nicknamed her “Bullet” because of this and because she ran faster than most of the kids. She looked forward to the day she could pack a pistol and put the bad guys in their place.
There was only one problem. She had never heard of a woman police officer. Then in 1974, when Terri was sixteen years old, along came Angie Dickinson in the TV series Police Woman. Dickinson’s groundbreaking Suzanne “Sgt. Pepper” Anderson character made Terri realize she had a chance in law enforcement.
Three years later Terri was accepted into a police academy west of New Orleans and then landed a job at the sheriff’s office. It provided excitement, but the jurisdiction wasn’t so big that it was overwhelming. “It was a new adventure every day, and I loved it,” she says. “I could finally help people and make a difference.”
One summer evening in 1982, she was dispatched to a suburban neighborhood where a tank-truck driver had gotten lost, driven up a residential street, and made a left turn in such a way that the tanker overturned. The containment doors at the top of the tank weren’t locked. They sprang open, and gasoline poured into the subdivision, which housed mostly older residents.
A fellow officer monitoring the scene shared his concern with Terri: “Something could happen. This could ignite from a pilot light or anything, and we’re going to have a lot of hurt here.”
As soon as he said this, she heard someone shouting, “Run! Run now!”
Terri wanted to know why she was supposed to run, and in which direction. She turned around to see a thin blue streak racing from a house to the overturned truck. Before she had time to process what could be going on—that a pilot light had lit the fumes—she felt intense heat and saw flames.
There was a loud boom. Terri rocketed into the air. A manhole cover had blasted off because of the pressure from the fire underground. As she shot up, close to the utility wiring, she thought, Is this how I’m going to die?
A few seconds later she crashed back down and landed on her head. She was dazed, but braved it out. She felt OK other than a loss of hearing. Everything was muffled as if she were underwater. She kept working, trying to get people out of their houses and to safer ground. Manhole covers exploded, but she barely heard them now. Gasoline snaked its way through grass and flames followed.
A few hours later, the fire was out, and everyone went back home. But Terri’s life would never be the same. When she crashed to the ground, she had suffered a brain stem injury. A couple of days after the incident, she had her first seizure of a lifetime of seizures that would follow.
The worst were debilitating tonic-clonic seizures that came with no warning. Sometimes they hit her one right after another, causing her to seize far longer than the average single tonic-clonic seizure, which is usually over in a matter of a few minutes. Her partner, Lora Kennedy, would watch helplessly as Terri stiffened, lost consciousness, and thrashed and spasmed on the ground. All she could do was try to roll her on her side, get something soft under her head, and cover her with a blanket. “She truly was like a fish out of water. It was so frightening,” Lora says.
Terri would never go back to the police work she loved so much, but eventually, with the help of medicines and physical therapy, she was able to find less demanding work. For more than a decade, the medicines kept the seizures under control—maybe just a couple of seizures a year, and she could sense them coming. She had a good run. But gradually the medicines lost their effectiveness.
In the late 1990s the seizures took over her life.
She became depressed and was scared to leave her house. Once highly social, she became isolated. She would go out only for doctor’s appointments.
Some days she had three tonic-clonic seizures. She could drop anytime, anywhere. The seizures left her debilitated and foggy for hours after.
Terri learned her triggers for seizure onset. Pain is one of them. The seizures themselves can cause pain from sore muscles, which can bring on another seizure. But worse was the toll that falling to the ground took on her body.
All told, Terri’s falls have resulted in thirty-five concussions, ten knee surgeries, three broken-nose surgeries, a broken wrist and several broken fingers, a sprained back, broken ribs, and a few shoulder dislocations.
In 2008, her neurologist suggested she try VNS therapy—sometimes described as a pacemaker for the brain. A device about the size of a silver dollar is implanted in the chest wall. Thin wires from the device are woven around the left vagus nerve in the neck. When the VNS is activated, it sends electrical impulses up the vagus nerve to the brain stem, which sends signals to areas of the brain involved in seizures.
Just what it does in the brain is still something of a mystery. “We don’t know exactly how VNS works,” states a page about VNS on the Epilepsy Foundation website. But in some people it can dramatically decrease seizures.
Terri figured she had nothing to lose but seizures, so she opted for the implant. Her neurologist worked with her in the following months to figure out the best rate and level of the electrical impulse. The sweet spot seemed to be an impulse every five minutes.
When it goes off, Terri knows. VNS devices can affect the voice and cause a slight choking sensation. When she talks during an impulse, she sounds like someone has a hand around her throat—and she says it feels like it, too. That sensation lasts thirty seconds. Every five minutes. All day, all night.
She’s learned to live with this because it’s minor compared with her seizures. VNS isn’t a magic bullet against seizures. It doesn’t always work. And even if it does, users still have seizures. The idea is that they won’t go on longer than the interval between the electrical pulses. Those lucky enough to sense a seizure before it begins can take advantage of a special magnet that comes with most VNS devices. They can swipe it over the implant and may be able to prevent the seizure from starting. Since Terri could never tell when she was going to have a seizure, this feature didn’t help her.
The magnet can also be used to stop a seizure once it starts by having someone else place the magnet over the device. That works if others are around, but Terri was often alone since Lora worked long hours as a data-entry specialist. While the implant was reducing the impact of the seizures, Terri was far from seizure-free.
She was resigned to living the rest of her life as a recluse. Her only companion during the day while Lora worked was their old rottweiler, Izabeaux, or Izzy for short. When Terri had seizures, Izzy often lay by her side. When Terri came to, Izzy would lick her hand and face. Terri found it comforting that this dog was so devoted. It made her feel less horribly alone and scared when she woke up disoriented and in pain. And Izzy’s licks seemed to help her come through the fog more quickly.
When Izzy died of cancer in 2009, Terri felt more alone and despondent than ever.
A neurologist had told her about dogs who help people with seizure disorders. When her grief over Izzy’s death lifted a little, she started doing research. It turned out there was an organization only eighteen miles away that trained these dogs. Besides general service dog skills like opening the refrigerator or drawers to retrieve items, the seizure dogs could fetch medicine and a phone, and summon help by pushing a big life-alert button on the floor. They were also trained to lie next to their person during a seizure, or on their lap. After a seizure, dogs would lick their person on the hand or face.
This sounded awfully familiar to Terri, who realized Izzy had really known what she was doing.
Terri applied to Can Do Canines and got called in for an interview. By now she really wanted a seizure service dog and was nervous about how she’d do at the interview. She had to scrape the rust off her ability to speak with people other than doctors and family. She didn’t want to screw up.
She didn’t have to worry. Trainer Mona Elder liked her immediately. “She was warm, smart, sincere, and truly in need of one of our dogs,” she says. “And she had a really interesting idea.”
Terri asked Mona if it would be possible to train a service dog to use the VNS magnet. Mona didn’t see why not. The magnet is a little larger than a quarter, and with some ingenuity, it could be attached to a dog collar. Since the organization already trains its seizure dogs to lie next to their clients during a seizure, it probably wouldn’t take much tweaking to get a dog to lie with his neck to Terri’s chest.
Mona had a dog in mind for Terri: a big black Lab named Brody. She hoped they’d be a good match. As soon as Terri saw him from the other side of the training room, she knew he was the one. “I was smitten,” she says. “My heart just melted.”
The feeling was mutual. Brody ignored the little treats Mona tossed to him and headed straight for Terri. She bent down to say hello and he licked her all over her face. Then he stopped and sat and stared at her with his deep brown eyes for a long time. She says she knew what he was trying to tell her.
I’m here for you and I know you’re the one I’m meant to be with. I’ve got you, don’t worry.
Over the next months, she learned all the ways Brody could help her. He had trained with people acting as if they were having a seizure—not with people having real seizures. The transition usually works out, but only time would tell.
Early in their training together, Terri got to bring Brody home for a weekend. He was fifteen months old. She was just supposed to play with him and hang out. She was ecstatic about being able to spend a whole weekend with him. Friday was fun and games. On Saturday, Lora went to work and it was just Brody and Terri.
Terri doesn’t remember falling. But she does remember that when she came out of the seizure, Brody was with her. She couldn’t move much yet, but she could see he was lying right next to her, flanking her side. She felt a surge of warmth and relief that he was so close to her, and that she wasn’t alone.
Then she felt something else. Something sharp in her side and something odd on her chest. Once she regained use of her arms, she propped herself up and saw that she was buried in dog toys.
She realized that while she was seizing, Brody had brought all the toys he could find, plus some hand weights that held his toy box in place. He even brought over the “Brody phone,” the big life-alert button he hadn’t quite learned to use yet.
“When I saw all he had done to help me, I just cried and hugged him tightly. He won my heart that day, forever,” she says.
Mona soon added a new task for Brody: the snuggle. He quickly learned that when Terri said, “Snuggle,” he needed to get his collar over the left side of her chest, above her heart. This would get him in the right position for the magnet to activate the VNS.
While snuggling with Brody made Terri happy, she says the electrical impulse triggered by the magnet “felt like a karate chop to my Adam’s apple.”* Afterward she always coughed. The cough was Brody’s signal to lie on her legs to keep her from standing until she had recovered.
Getting out of the house was an essential part of the training. At first it was disconcerting, like coming out of a dark room into the bright light before your eyes have adjusted. But Brody and Mona guided Terri through the rough spots, and soon she was walking with confidence into places she’d never dreamed she’d go again.
The three of them took field trips to grocery stores, restaurants, movies, parks, and malls. It was the standard public-access training all the organization’s dogs get, but for Terri it was much more than that. It was her baptism into the world she had left behind.
Brody had been living with Terri for only ten weeks when he began alerting to her seizures. At first it wasn’t a clear alert. He would get agitated, pace, not listen. Sometimes he head-butted her legs. She couldn’t figure out what was going on, but pretty much every time, she’d have a seizure a few minutes after this odd behavior.
It wasn’t hard to correlate his behavior and her seizures. Soon Terri learned to read his body language, and would lie down and ask him to snuggle. His magnet would set off the electrical impulse, boom, and she wouldn’t seize. It took about a year to fine-tune their communications about this matter, with Brody pawing at her thigh until she paid attention.*
The first year they were together, he activated the VNS device sixty-nine times. The second year, he was up to ninety-nine times. These days he alerts more than a hundred times a year; Terri has just a few seizures a month because he’s able to prevent the bulk of them.
Before she got Brody, she was raced in an ambulance to the emergency room up to three times a week because of injuries or overly long seizures. In the eight years she’s had him, she’s taken this trip fewer than twenty times. She attributes 30 percent of this success to VNS and 70 percent to Brody.
“It’s like having my own personal EMT 24/7,” she says. “An EMT who snuggles and lets me hug him and is my best friend.”
When I visited Terri in her three-story home in the Longfellow neighborhood of Minneapolis, Brody greeted me at the door, wagging his tail in goofy circles and licking my face when I reached down to rumple his ears. He was graying under his eyes and along his chin, but his black coat gleamed as it must have in his youth. I fell for this older gentleman immediately, and could imagine how Terri must have felt when she first met the young dog who would end her time as a reluctant recluse.
Terri made her way to the living room, limping slightly and walking slowly. “This is what happens when I don’t listen to Brody,” she said.
She sat on the floor with her back against a couch. Brody immediately left my side and walked over to Terri. He looked at her closely, lay down perpendicular to her leg, and rested his head on her shin, facing her. It would be his vantage point for much of our interview. His eyes shifted from Terri to me and back as we talked, following the conversation as if it were a Ping-Pong game.
Brody can alert Terri to most of her seizures, even if he’s sleeping. But sometimes she’s not paying enough attention. Maybe she’s in a rush or too focused on something else to notice. A few days before I arrived, Terri and Brody were leaving the house to go to breakfast with a friend, who was waiting in her car in front of their house. Brody kept stepping in front of Terri. He blocked her path on the stairs and got underfoot.
“C’mon, move, Brody, I’m hungry!”
This wasn’t like him. Normally Brody is a gentleman, always walking beside her, checking in with her to make sure she’s doing OK. And here he was, almost tripping her. “Brody, that’s annoying,” she said. It’s the last thing she remembers before her seizure.
She dropped hard. She injured her knees and dislocated her right shoulder. “You’d think I’d learn my lesson,” she said. “You do not ignore this dog.”
One time she was at the top of the stairs and seized and fell backward to the bottom. Brody had been trying to tell her, but she figured she just needed to get up to her bed. She broke some ribs in addition to two banister spindles and ended up with a concussion. Brody ran over and activated her VNS, then raced to the “Brody phone” and slammed it with his paw. As Terri was emerging from the seizure, she heard the emergency responder’s voice crackle on the other end: “Brody, I’m going to stay right here with you. Help is on the way.”
Brody doesn’t need to be near Terri to sense a seizure coming on. Sometimes he’s on one floor of the house and she’s on another. He’ll thunder up or down the stairs, skid to a stop next to her, and alert. She’ll get her chest close to him and bam. Seizure prevented.
Even though Terri wasn’t able to walk long distances when I visited, she still got Brody out for long walks. She’d sit on her motorized scooter and hold the leash as they meandered through the neighborhood.
Brody gets to enjoy the big backyard whenever he needs to. And once a week he and several other service dogs come together for playtime. Terri imagines they probably swap stories and give one another advice, but to the humans it looks like it’s all about running around and having a blast.
She enjoys seeing Brody cutting loose like this. She says he’s a workaholic. This dog was not content to be just a seizure savior. At some point, he branched out into several other specialties.
A few years back, Brody developed an odd obsession with Terri’s neck. He sniffed and nudged it with his nose several times a day. She thought maybe it was his new way of connecting with her. But after several weeks, she noticed that when he bumped her in certain parts of her neck, it hurt. She decided to bring it up to her doctor when she went in for something else.
The diagnosis: medullary thyroid cancer.
Brody, the oncologist.
“Brody knew it all along,” she said. “He was just trying to get me to figure it out. He saved my life—again.”
Brody stayed by her side through medical tests, and as soon as she was out of surgery and the hospital staff gave the OK, he jumped up to the foot of her bed, lay down, and curled up tight next to her feet. She wasn’t fully conscious, but she learned later that her feet moved toward him as soon as she sensed he was there. He rested his chin on her ankles, sighed, and went to sleep. He stayed with her around the clock as she recovered.
Since the surgery, Brody hasn’t paid any attention to her neck. Terri still gets checked every six months, just in case, but she’s pretty sure she’d hear from Brody if anything was wrong.
But her medical issues weren’t over. Besides her “pacemaker for the brain,” Terri ended up getting a heart pacemaker because of severe irregular heartbeats. It doesn’t do the job she hoped it would, and she frequently experiences atrial fibrillation and tachycardia episodes.
Guess who usually tells her about them before they happen?
Brody, the cardiologist.
When he senses heart trouble coming, he won’t let her move. If she gets up, he stands in front of her. If they’re walking, he’ll stop and look at her.
“I finally learned it’s the way he says DANGER!”
And then there’s Brody, the endocrinologist. Lora has also had significant health issues over the last few years. On top of her own heart problems, she developed diabetes. Brody will tell her when her blood sugar is off. He places his head on her lap and won’t move until she checks.
“He’s been right every single time,” Lora said. “I thought he couldn’t possibly do more than he already is, and he took me on, too.”
Dr. Brody’s patient list is never closed.
The only problem with Brody is that he’s ten years old. Terri knows Labs have a shorter shelf life than smaller dogs, and she worries about what will happen when she loses him. Two of his littermates, who were also service dogs, have already died. Another one had a massive stroke.
She doesn’t want to think about the heart-shredding pain of his death. She’s afraid that without him, she’ll plunge back into the darkness. Maybe there will be another medical alert dog for her one day, but she’s sure there will never be another dog remotely like Brody.
“We’re so melded together. This hand is the dog who saved me,” she said, making a small arc motion with her left hand. “And this hand is me,” she said, drawing her right hand and wrapping her hands in a tight ball. “We’re like one heart beating together.”
How do dogs like Brody, Frida, Nina, Bud, and Dexter detect seizures? A review paper published in Epilepsy Research in 2011 concluded that “the consensus . . . is that dogs probably alert to specific and subtle human behaviour.” For years it’s been thought that dogs are sensing subtle changes in facial expressions, breathing, heart rate, and body language, or that dogs might be detecting unusual electrical signals from the brain.
I put the question to Nathaniel Hall, PhD, director of the Canine Olfaction Research and Education Laboratory at Texas Tech University, when I met him at a conference in Arizona in 2017.
“We really have no idea. It hasn’t been researched to any degree,” he told me. “The dogs may be smelling a biochemical change if there is one, but no one has shown this.”
The theory that scent could play a role in alerting is becoming more accepted as we learn about the power of dogs to sniff out disease. Our understanding is limited, but two studies are beginning to shed light on what’s going on.
The English charity Medical Detection Dogs is probably the world’s foremost center for training dogs to sniff out the scent of disease. The organization is working with Ghent University Hospital in Belgium “to show that seizures have an odor, just like the other diseases,” says Claire Guest, the organization’s cofounder and chief executive.
The hospital has been sending Medical Detection Dogs samples from people in pre-seizure mode—probably around the time a dog would be able to smell something if there is a scent. One year of the three-year study has been completed. Claire wasn’t at liberty to say much about the results because they were preparing to publish a paper, and the results have to be hush-hush until then.
“I can say that it’s going very well,” she told me.
The other study paired a team from the University of Rennes 1 in France with Medical Mutts, the organization that did one of the diabetes studies cited in the previous chapter. Medical Mutts, like Little Angels, trains its seizure-alert dogs to alert to the scent of its epileptic clients.
The samples for the study were all collected in the hospital. The researchers swabbed the skin of patients during seizures, during “normal” time, and during exercise. (The patients also blew breath into a plastic bag in which the samples were stored.) Five dogs who had been trained on samples from other people during their seizures successfully alerted to the seizure samples only. The samples they alerted to represented a variety of seizures.
“We are thrilled to finally be able to scientifically show what we’ve known for a long time,” said Dr. Cattet of Medical Mutts.*
Maybe one day dogs will help researchers find out what scents they’re detecting before seizures manifest. This could aid in the development of a device that could be used by anyone to “sniff” and alert before a seizure felled them.
Researchers around the globe are already following dogs’ noses to uncover the hidden scents of one of the leading causes of death. Cancer strikes more than 1.7 million Americans each year and seventeen million people worldwide. What our canine research partners are helping us learn may lead to more of us surviving the “emperor of all maladies.”