I know a dog who met Queen Elizabeth II. Not only do I know this dog, but when I was visiting his home in the charming town of Cannock, England, he ran up to me and took great interest in my reporter’s notebook, looking as if he were trying to read it. While I was laughing (no one but me can read my writing, not even a dog), he took the opportunity to give me a kiss. By this I mean that he gave a big wet lick to my wide-open mouth. This made me laugh more, and he seized the moment and went in for another smooch, but I closed my mouth in time and he just got my cheek.
At the time, Nimbus hadn’t yet met the queen. But when I heard that months later Nimbus, a Lab–golden retriever mix, had been in her company, I felt as though I had made her acquaintance. As an American about 1,053 degrees of separation from the queen, this is probably the closest I will ever come to meeting her. Not only did Nimbus meet Her Majesty, but she beamed at him and Jodie Griffin, the twenty-seven-year-old woman he watches over. While this was going on, he had a good sniff of the queen’s black leather handbag, which was hanging from her arm at dog-nose level.
You may be wondering what he smelled in her purse. With the queen’s love for her corgis, I’d like to think there were several perfect royal dog biscuits tucked away inside a gloriously silky compartment. Jodie jokes that she asked Nimbus, but he didn’t remember.
She can’t blame him because she doesn’t remember the conversation she had when she met the queen and Camilla, Duchess of Cornwall, a.k.a. Camilla Parker Bowles, wife of Charles, Prince of Wales, and a longtime supporter of the organization that provided Nimbus to Jodie. She knows they had a lovely chat, both warm and genuine, that they were intrigued by Nimbus, and that the duchess stroked his head and he snortled the queen’s purse. But the conversation is a blur. Even right after, when reporters asked her what they talked about, she couldn’t recall.
Sometimes when people are caught up in the moment and the moment is big, they may forget what happened—thus the odd condition of wedding-day memory loss. But in Jodie’s case, the more likely reason was that she had fainted several minutes earlier. Thanks to Nimbus’s expertise in alerting to Jodie’s fainting disorder, she didn’t slump out of her chair and onto the floor in front of the queen.
Nimbus told Jodie she was going to pass out while she was sitting in a circle of about thirty people with the queen and duchess. They were in Buckingham Palace’s Royal Mews, watching a demonstration by two biodetection canines from Medical Detection Dogs and learning about what they do.
A brown cocker spaniel named Kizzy nailed the cancer detection on the scent carousel time after time. The queen and duchess looked focused and serious as they watched her every step, and applauded enthusiastically when Kizzy was done. Next up was Peanut, a black Lab. As Peanut launched into his own successful round of sniffing for the scent of Parkinson’s disease, Nimbus abruptly stood up and began wagging and wiggling at Jodie. He sniffed the air and licked her arm. Jodie realized what might be going on.
Nooo. Please don’t tell me I’m going to faint. Not here, not now.
She tried to settle him, but if he’s alerting, he won’t settle. Nimbus sniffed again and stared at her, his eyes glistening with excitement. Then boom. The front half of his body plopped onto Jodie’s lap. His legs wrapped around Jodie’s sides, and he licked and nudged her. There is no clearer signal. Jodie knew she had just a few minutes to lie down before she collapsed.
Jodie hoped they didn’t think her dog was misbehaving. She walked to the back of the room, sat on the floor, and took some medicine. She felt weak and shaky. Time to lie down. Nimbus tucked into her chest and leaned against her as she lay on her side with her knees toward her chin. She draped her arm over him and waited.
Doctors haven’t been able to figure out the cause of Jodie’s syncope. They’ve trotted out a variety of diagnoses since her first collapse at age six. Most doctors agree she has POTS (postural orthostatic tachycardia syndrome). One of its main features is a rapid heartbeat and a loss of consciousness, usually when going from sitting or lying down to standing. But Jodie can faint while she’s sitting or even lying down, and she has other troubling symptoms, so experts have come up with several disorders with alphabet soup acronyms.
It’s a dangerous malady, whatever it is. She was nine when she collapsed face-first onto a hard floor. Her upper front teeth jammed into her lower lip and shattered. She still has fragments of teeth in her lip. When she was nineteen, she collapsed while crossing a busy street. When she came to, cars were veering around her and pedestrians were watching her with no offers of help.
For a while she was fainting up to ten times per day. By taking medicine and paying attention to her triggers—like standing up and most physical activity—she’s down to fainting two to four times a day. The less activity, the less chance she’ll faint.
Until she got Nimbus in 2015 from Medical Detection Dogs, she rarely ventured out without a wheelchair. But now her wheelchair, like Paul’s, collects dust most weeks because Nimbus can give her warning a few minutes ahead of her syncope, allowing her enough time to get into a safe spot.
As Queen Elizabeth sat watching Peanut’s demonstration that day in the Royal Mews, Jodie’s episode began. She describes it:
“I often feel a strange pulling sensation, like gravity dragging me straight down through the floor. My vision goes all gray at the edges and then it’s suddenly black. I can’t see. My hearing is very distant, like somebody turned the volume down and made voices sound all distorted or bubbly, like we’re underneath water. My arms and legs start to feel very heavy and I can’t move them or lift them.
“If I were still seated in a chair or in a standing position, I would have just fallen straight to the floor in a heap, unable to speak or move.”
Jodie doesn’t know if she fully lost consciousness at Buckingham Palace. If so, it was for only a few seconds. As she started to feel better, she was able to move her hand. She felt Nimbus’s soft fur. His tongue licked her hand. Her legs were shaking hard, as often happens. She thinks it’s her body trying to get enough blood back to her brain so her body can function again.
She sat up and gathered herself. It had been a short episode, just a few minutes. Sometimes she can be out for an hour or more. She realized where she was and stood up carefully. She felt weak and unbalanced, and one leg was still shaking. She looked over and saw that the demonstration was done, and the queen and duchess were meeting with the dogs and their people.
“Are you OK?” someone with Medical Detection Dogs asked.
“I’m fine,” Jodie said, and smiled convincingly.
Before she got Nimbus, her illness had kept her from so much. She was not going to add this to a bucket list of regrets.
Jodie focused on the queen’s white gloves and, with Nimbus flanking her, made her way toward the smiling ninety-one-year-old monarch.*
Nimbus is one of a growing number of dogs trained to do a medical job outside the norm. He’s a specialist, as most doctor dogs are, but with an unusual gig. Service dogs for people with POTS are becoming more popular, but Jodie doesn’t have a clear-cut diagnosis. So Nimbus is just going by his nose.
He was trained on skin swabs and breath Jodie collected while she was feeling “unwell,” as she puts it. When his trainer felt he was ready, Jodie and her mother drove down to the organization’s headquarters to train with Nimbus. They took him back to their hotel on the first night.
“We were fast asleep. Nimbus woke up and was crying and pacing around the room. He kept licking my face, then walking around to Mom’s bed crying. He did it a few times, so I woke myself up and had tried to sit up to call him over to settle him to stop him wandering up and down. That’s when my symptoms hit, and I got really hot and dizzy and realized I couldn’t speak to tell him to settle down and the room was all spinning. I lay back down quick before my arms went all weak. He came over and was still just licking at me. I assume I blacked out and that’s all I remember.
“Luckily I hadn’t got out of bed, so I didn’t faint or hit the floor. But we literally didn’t think any more of it. I just fell back to sleep because I was completely exhausted from the training day and I assume Nimbus did, too. The next day when Helen the trainer asked about alerting, I said I thought that he had in the night but I really wasn’t sure and I asked if it could be a coincidence. And Helen asked if he got up in the night at any other time. We both said no, he was perfectly settled and completely quiet, didn’t get up or make a single sound all night. Even in the morning he didn’t wake me up for breakfast. He was just curled up in his bed.
“And it was only then when I realized properly what had happened and why he had woken us up and it started to sink in and I suddenly believed it was all possible. I tried not to get my hopes up too much, but I really believed it from that morning and I was already so proud of him and genuinely amazed.”
Since then his record is almost perfect. He missed only a couple of times, toward the beginning. Within a few of weeks of their partnership, Nimbus had alerted in shops, at her college art class, and on walks. He’s been with her for hikes in the countryside and trips to Disneyland Paris. She is a huge Disneyland fan, and Nimbus, ever the sport, is game for any ride she wants to go on—not that she can go on the more intense ones. And he seems to get a kick out of wearing Mickey Mouse ears.
“His detection of my illness has changed my life,” says Jodie. “But the fact that he does it with such goofy joy and fun and happiness is the best part.”
And then there are diva doctor dogs like Shugga—a fluffy Pomeranian with attitude (and occasionally a pink tutu). When she reports for her unusual volunteer job as a Parkinson’s disease–detection dog on Washington State’s San Juan Island, she doesn’t let anyone get in her way. She barks at the training-area gate steward to open the gate now. She yips with dissatisfaction when a dog detecting Parkinson’s ahead of her in the next room is taking too long.
It’s almost as if Shugga knows that her work is important, and the sooner she gets on with it, the better for humanity. Then again, she probably just wants to have fun playing the game where she gets a delectable treat and praise when she does well.
Shugga is one of fourteen dogs on the Parkinson’s-detection team at PADs for Parkinson’s. She’s joined by Hudson, Buster, Ella, Dez, Ajax, Rudi, Quil, Topper, Levi, Sasha, Russell, Rowan, and Mia. Most of the dogs are giants compared to her, but there are a couple of scrappy little terriers in the mix. They all live at home and train two to four days a week, depending on their level.
These dogs have it made. They get to smell T-shirts—sometimes even ones with underarm odor strong enough for humans to smell—in exchange for little pieces of home-cooked turkey. The T-shirts are tucked into metal canisters, and one dog at a time walks around the canisters and alerts if the scent of Parkinson’s is present. The dogs don’t see one another, and samples are always switched out, as they are in any kind of biodetection in a controlled setting.
PADs cofounder and program director Lisa Holt says it takes about four hundred exposures on dozens of Parkinson’s T-shirts for the dogs to show the first signs of recognition.
“We know it is a complex signature, and of course, they’re sorting this from a huge canvas of background noise,” she says.
The dogs are doing an impressive job. Overall they’ve got 94 percent sensitivity and 86 percent specificity. (In case you skipped the cancer chapter, this means they detect 94 percent of the Parkinson’s samples and recognize 86 percent of controls as being controls—or, on the flip side, they miss only 6 percent of Parkinson’s and misidentify 14 percent of controls as positive.)
At this point, PADs is not involved in a study, although data are collected carefully. The organization’s goal is not to become a screening facility for anyone who wonders about their Parkinson’s status. As helpful as that would be since there are no tests that can help diagnose Parkinson’s in its early stages, Lisa realizes how difficult it is to do screenings using dogs—a lesson some cancer researchers have been learning. Since no one would know if the T-shirt wearer has signs of Parkinson’s, it’s tricky to figure out a reward system that keeps a dog confident and accurate. She says one way around this would be to run just one or two unknown samples per dog per week. It could work for screening small numbers of people.
But for Lisa, the work is more about dogs’ noses helping science identify and isolate the VOCs from Parkinson’s—just as researchers are doing with cancer-sniffing dogs. When she was putting the organization together, an analytical chemist and professor at the University of Washington happened to be bringing his dog in to one of her puppy classes. Jack Bell, PhD, lives on the island and volunteered to join the team. He’s working in tandem with the dogs to identify and isolate VOCs. At the time of my most recent correspondence with Lisa, Dr. Bell was providing her with the compounds acrolein and 4-hydroxynonenal (HNE) to see if there was anything about them that the dogs recognized.
“A biomarker is like a fingerprint at a crime scene,” she says. “I believe the noses of the dogs can help to uncover important clues left on the path of PD disease progression. By working together, we may find clues left at the beginning of the path.
“The dogs, once they know what odorant molecules to look for, can be used to fast-track this step by saying ‘Yes, that’s it’ or ‘No, that’s not it’ when introduced to a lab sample. Jack was so excited when he figured this piece out.”
If the dogs and Dr. Bell can find a biomarker for Parkinson’s, this could one day lead to early detection for a disease that’s usually diagnosed only once symptoms appear. Researchers say early diagnosis would mean fewer dopamine neurons being lost and might result in new ways of treating the disease.
In England, Medical Detection Dogs is working with Manchester University on a two-year study funded by Parkinson’s UK and the Michael J. Fox Foundation for Parkinson’s Research. Four dogs there are hot on the trail of the scent: Peanut and Rumba, both black Labs; Bumper, a golden retriever; and Zen, a large rescued black cocker spaniel.
“Zen is also nicknamed What-a-Mess, as he comes in from a walk bringing half the field with him,” says Jenny Corish, biodetection coordinator at the organization. “He is the loveliest, sweetest boy.”
A total of eighteen dogs are rooting out Parkinson’s in the US and the UK. That’s a lot of nose power coming at the disease. Maybe one day, with the help of dogs, a diagnosis of Parkinson’s will be far less devastating than it is today.
But dogs won’t get all the nose credit this time around. The first nose that made headlines for sniffing out Parkinson’s belonged not to a dog, but to Joy Milne, a retired nurse from Scotland.
In the mid-1980s, Joy smelled a strange scent emanating from her husband, Les. Joy described it as a musky odor, and not necessarily an appealing one. She often asked her husband, a busy anesthesiologist, to shower and brush his teeth without realizing he had just done so. Eventually she stopped talking about this odor since it upset him. About a decade later, he was diagnosed with Parkinson’s disease.
Whenever Joy attended Parkinson’s support group meetings, she noticed that same smell all around her. Years later, at a lecture about Parkinson’s, she asked the speaker why people with Parkinson’s smell different. The doctor didn’t know what she was talking about, and got in touch with her after speaking with colleagues about her question. They put her to the test and had her smell twelve T-shirts—six worn by people with Parkinson’s, six without. She identified seven T-shirts as having the Parkinson’s smell, the rest as normal. The researchers were impressed that she got eleven out of twelve.
Within a year, the person who had worn the T-shirt she had “misidentified” was diagnosed with Parkinson’s. Make that twelve for twelve.
When Joy’s story came out in 2015, it led to the MDD study and inspired Lisa to put her extensive canine background to use in a meaningful way.
“It would be the greatest honor of our existence to participate in a journey to help point research in the direction of a biomarker,” Lisa says.
It’s a heavy responsibility for Shugga and her baker’s dozen friends (and frenemies—every diva has them). But they are blissfully unaware as they wag around the scent wheel in hopes of a roast-turkey reward for their efforts.
As trainers come to realize how willing and able dogs are to learn skills that can help our health, they’re getting more creative with what they ask them to do. In my search for doctor dogs with uncommon jobs, I found a dog who had been trained to help with a serious sleep condition. He’s one of only a handful of dogs around the world who have had this job.
Rollo is going to wait for his introduction until after you get to know his young woman, Danielle Brooks. Waiting is something he does well.
Anything that abruptly changes Danielle’s emotions can cause her muscles to go slack: It could be a cockroach skittering across the floor. A funny friend. Pain or fear. An adorable frog showing up at a swim meet.
Sometimes these emotional changes cause only a minor facial droop, especially if it’s just a slight shift of emotion. But too often Danielle experiences a frightening and sudden loss of muscle tone. She can go from a heartily laughing young woman to what looks like a limp rag doll in a matter of seconds.
At first her speech slurs as if she’s drunk, and her jaw goes slack. Her head starts nodding, and everything becomes blurry as her eyes close. Then her knees buckle. If she’s standing or walking, she’ll slump to the ground. If she’s lucky, she can grab onto something to break the fall.
When people see her collapse, they think she has fainted or passed out. But she’s fully conscious—trapped in an unresponsive body, unable to move, barely able to talk, sometimes struggling to breathe. She can be down for ten seconds to ten minutes.
Danielle has cataplexy, a rare neurological disorder where the muscle paralysis normally experienced during REM sleep bubbles up into waking life. Our muscles need to lose tone during REM (rapid eye movement) sleep so we don’t act on our dreams.
What’s helpful while sleeping is a nightmare while awake. During high school in Buford, Georgia, Danielle was a champion swimmer. One day while poised on the starting block during a competition, she felt the cataplexy overwhelm her. She couldn’t say a word, couldn’t move to save herself from what she knew was next—landing either in the pool or on the hard concrete of the pool deck. She went limp and dropped into the pool. It wasn’t a severe episode, and she managed to pull herself out of the pool, even though she couldn’t feel her legs. (She was disqualified.)
Some people with cataplexy end up trying to live life as a flat line—no ups, no downs, and as emotionless as possible. The consequences for laughter, anger, surprise, or excitement are not worth it.
Danielle has suffered scrapes, bumps, and a concussion. Cataplexy feels like it’s lurking close to the surface most of the time—especially when she’s tired. Yet when she was diagnosed during her freshman year of high school, she made a promise to herself:
“This disease won’t change who I am but will hopefully make me a better, stronger person. I still choose to laugh, even if I look like I am drunk or slump to the floor in front of my friends. I will never let my illness define who I am.”
Cataplexy rarely exists on its own. It’s usually always bedfellows with narcolepsy, a chronic neurological disorder that causes extreme daytime sleepiness. Like cataplexy, the condition is a breach in the brain’s ability to regulate the sleep-wake cycle. Narcoleptics are often extremely tired and can fall asleep with little warning. It can feel as though they haven’t slept for twenty-four hours even if they’ve recently napped.
About 70 percent of people with narcolepsy have cataplexy. This double whammy of sleep disorders is called narcolepsy type 1. It’s relatively rare, afflicting between one in two thousand and one in five thousand. Narcolepsy type 1 is an autoimmune disease caused by the destruction or death of brain cells in the hypothalamus that produce the neuropeptide hormone hypocretin (also known as orexin). One of hypocretin’s main jobs is to promote wakefulness. Without it, staying awake can be a losing battle. Narcolepsy type 1 often starts during adolescence, but it can take years to diagnose, with symptoms being confused with laziness, lack of sleep from schoolwork or social life, or depression.
Danielle was one of the lucky ones. It took only a year from the onset of her symptoms to her diagnosis.
She had always been athletic, and began swimming competitively at a young age. She swam almost every day, and by age fourteen she had top age-group time standards. She was swimming five thousand to seven thousand yards per day, five days a week. She loved the sport, but during her freshman year, no matter how hard she tried, she was getting slower. Practice became exhausting, and she came to dread it because it took so much out of her. Her parents thought she had lost interest—something normal at that age. But she hadn’t. Her passion for the sport still drove her, but she couldn’t get her body or mind to cooperate.
During that year, her life spiraled down. She was sleeping more, but couldn’t stay awake longer than a few hours. School became a struggle. She had always been an A student, but she was so tired that she had a hard time focusing and often fell asleep in class. Her algebra teacher called her parents and described her sleeping as “disrespectful.” Her friends joked that she was a bobblehead as they watched her head jerk up and fall back down as she tried to stay awake in class.
She could fall asleep anywhere, at any time: riding home from school, watching a movie, doing homework, eating dinner, even leaning over to pet one of their dogs. Her parents took her to several doctors, who tested for numerous physical problems, including low iron and mononucleosis, but they never found anything. They said she was healthy.
If her younger sister, Gianna, hadn’t been a natural comedian, her diagnosis might have taken much longer. Gianna thought it was hilarious that she could make her sister laugh so hard that she would collapse to the ground. So did Danielle. When she pointed out this amusing observation to her parents, they finally had the missing piece of the puzzle. Her mom did an internet search for “buckling knees laughter” and there it was: Cataplexy. Narcolepsy. The likely answer to this mystery that had so abruptly robbed their daughter of the life she had known.
After a visit to a pediatric sleep specialist and an all-night sleep study, Danielle was relieved to finally have the answer. There is no cure for her narcolepsy, but medications and regimented naps can help. She adjusted her life to make room for the diagnosis. Her life improved, but she felt imprisoned by the disease.
Narcoleptics typically drop almost immediately into REM sleep. Their dreams are often frightening, vivid, and realistic. They rarely get the restorative sleep they need. Doctors prescribed Danielle a new and expensive drug that improves her sleep and diminishes the nightmares. It’s been a godsend, but it’s short-acting. She has to wake up at 3 a.m. for a second dose every night. Getting up at a normal hour in the morning is enough of a challenge for Danielle, much less at 3 a.m. Even when she set two alarm clocks, her parents usually had to wake her up.
Danielle worked hard at being a normal, involved teenager. She kept going to school, studying as diligently as possible, hanging out with friends, doing volunteer work, and swimming two to three hours a day—changing from a mid-distance swimmer to a sprinter. (Her friends gave her the nickname “the nautical narcoleptic,” and it’s still in her email address. Many photos of her at swim meets show her sleeping on the sidelines before or after her competitions.)
At the same time, she was cautious and guarded while performing everyday tasks like taking stairs, standing near windows, riding in elevators, or even walking alone to a friend’s house. She would worry and think What if I fall?, and the twinge of anxiety would cause her cataplexy to rear up and she would fall.
The idea of going away to college in three years concerned her and terrified her parents. She began to question if she could ever be truly independent. She wouldn’t be able to drive. But if she took a bus, she could easily fall asleep and miss her stop and end up who knows where. Anything could happen. How would she wake up without her parents there to help her?
One day while laughing with a friend in front of her house, she felt the cataplexy take her over. Her face drooped, her words slurred, her vision blurred, and her head bobbed. She collapsed onto her driveway and slammed the back of her head on the concrete. The fall resulted in a concussion and some bruising. Because of the concussion she had to remain in a dark room with no stimulation for a week and wasn’t allowed to take her medications. She couldn’t go to school and fell behind on her homework. Keeping up was hard enough. Catching up was daunting.
It was the turning point for Danielle. She realized she needed help beyond what her parents and medications could offer. Her father is a veterinarian, so she had grown up knowing about the benefits of service dogs. She wondered if there were service dogs for narcoleptics. She imagined what it would be like to have a constant companion who would give her back her independence. A friend of her father’s suggested they check an organization about an hour west of Philadelphia. They got in touch and she was encouraged to apply. The organization had never trained a dog for a narcoleptic, but trainers thought they might be able to make it work.
Danielle wrote a long, clear, heartfelt essay as part of her application. Here’s how it ended:
Narcolepsy and cataplexy cause you to be scared and question who you are. You fight the urge everyday to just stay home and shrink away. Everything is different for you, but I have a choice. My choice is to fight this head on and to be smarter, stronger, and more resilient than I ever have been before. However, I thought it would be easier than it is proving to be and while I can try to go it alone, I would deeply love and appreciate the help, confidence and companionship, a service dog would provide in reaching my dreams and future. WE will do great things together and he or she will be a part of it all. Thank you for considering my request. I will love and respect him forever, I promise!
After the people at Canine Partners for Life reviewed her application and interviewed her, they knew they had to try to get this girl a dog. She got a call a few months later that they had a match for her.
His name was Rollo, a smiling, handsome, sturdy yellow Lab with a coal-black nose and a big, wide head. Like most of the organization’s other service dogs, Rollo had spent four months with a foster family, eight months getting basic training in a prison program, and another year training at the organization’s headquarters in Cochranville, Pennsylvania.
Rollo had a friendly, outgoing temperament, was energetic, and had passed an important and unusual test: Trainers had placed him for a few days with the client who has several seizures every day and tests dogs to determine if they have a natural ability to detect seizures. (You met him briefly in Chapter 2.) Rollo seemed to be able to tell that the man was about to have a seizure, though that didn’t mean he would alert to Danielle’s impending sleep attacks or cataplexy. Still, even if he couldn’t, there was so much he could do to make her life better.
He had spent his life training for this role.
It’s a bright spring morning, and Danielle’s alarm is going off. She doesn’t stir. She’ll be late for classes at the University of Georgia if she doesn’t rise and shine soon. Rollo has been sleeping right next to her, with his head on her stomach, but now it’s time for him to be her alarm clock. He stands up over her and licks her face. He takes a moment and watches to see if she wakes up. She stirs, opens her eyes, blinks a few times, and smiles back at the happy face above her. She loves how delighted he is to start a new day.
She tells him, “Good boy!” He jumps off the bed and stretches a full, languid downward-dog.
It wasn’t the first time that morning that Rollo had woken Danielle. A few hours earlier, at 3 a.m., he heard the alarm that wasn’t waking her up and licked her face until she sat up and took her medication.
He might wake her later in the day, too. Rollo knows their bus stop, so every time the bus driver announces it, Rollo stands up. This has helped Danielle several times when she’s been too exhausted to notice. When Rollo gets up, she’ll feel him on the other end of the leash or harness and usually awakens. As a backup, she also sets an alarm for a few minutes before she’s supposed to arrive at her destination. If that doesn’t wake her up, Rollo licks her and prods her with his nose until she’s awake.
Danielle and Rollo have been together four years. They spend nearly every waking and sleeping moment next to each other. Her friends can’t picture one without the other. Wherever Danielle goes, there’s Rollo: on buses, in classes, at restaurants, at the movies, in bathrooms, on planes, and recently even on a semester abroad in Scotland.
Rollo has gotten rid of the ominous “what if” factor that used to haunt Danielle under her confident exterior. Her friends say he’s a knight in shining armor. You could also see him as a trusty steed, outfitted daily in his mobility harness and service dog vest.
When Danielle falls, Rollo catches her; he’ll stand steady and strong, and she can lean against his harness handle as her knees buckle. He’ll watch over her when she can’t move. When she’s ready to get up, he gets into position and she can use him to help steady herself. When she walks, he pulls her along with the harness. This helps her use less energy. Less energy use means less fatigue, which means less chance of cataplexy. In fact, since she’s had him, she’s had only a handful of falls. Before Rollo, she was falling a couple of times a month.
If she needs a nap, he will lie with her and wait for her as long as it takes. Minutes or hours, he won’t leave her side.
He doesn’t alert to her cataplexy. Danielle thinks it’s because her cataplexy is always just a laugh or surprise or headache away. It happens so quickly. There is no time for him to slip an alert between when someone says something funny and when she drops.
But Rollo does have other alerts. He often lets Danielle know she’s going to have a sleep attack—when she falls asleep in places she shouldn’t. Danielle suspects he may sense a level of fatigue she’s not aware of. It tends to happen if she has pushed off her nap too long. “He gets in my face,” she says. Typically, if she’s about to crash during homework, he’ll stare at her and paw and lick her.
She was surprised to find that Rollo also alerts when she’s going to have a headache. Headaches are common in people with narcolepsy, and if Danielle gets a warning, she can do something to try to prevent it or diminish it. She may need water, or a nap, or medicine, or to get to a cooler place. Rollo has a distinct alert for headaches: He licks her palm. She had to learn to read his signals, and together they worked out their own special language. Once he knows she’s taking action to mitigate a problem, he relaxes.
Rollo has been trained to do dozens of other tasks. These help keep Danielle from getting too tired and let her rest if she’s exhausted. He does them with his usual verve. He turns on lights; picks items like phones, coins, keys, and socks off the ground; carries grocery bags; opens the refrigerator and gets her a drink; picks up his food bowl; loads and unloads laundry; tugs off her socks, jackets, and other clothing items; and pays cashiers.
And he does something else Danielle loves. Maybe the most important task of all. He makes her laugh.
“He’s so expressive, and when he’s out of harness, he’s so silly. He makes the funniest noises,” she says.
Danielle has stayed true to the promise she made to herself when she was diagnosed. She will never stop laughing. She laughs until she drops. But now, with Rollo at her side, she doesn’t have to worry so much about the consequences.
Clinical psychologist and behavioral sleep medicine specialist Mary Rose, PsyD, would like to see many dogs like Rollo in the future. At the moment, dogs who help people with sleep problems are rare.
“That needs to change,” says Dr. Rose, a clinical associate professor at Baylor College of Medicine and a staff psychologist at TIRR Memorial Hermann. “Dogs are a valuable and underappreciated option in sleep disorders.”
The Centers for Disease Control estimates that about seventy million Americans suffer from sleep disorders. And it’s not just the United States. Sleep medicine is a growing field around the world. Dr. Rose hopes that as scientists continue to learn about the importance of sleep for health and well-being, some will want to focus on what dogs can do to help people with sleep disorders.
“Research into the vital roles dogs can play should be a top priority,” she says. She points to some common sleep disorders (besides narcolepsy) where dogs have already proven helpful:
Obstructive sleep apnea. CPAP (continuous positive airway pressure) masks aren’t a lot of fun. They strap around your head and can cover your nose, your mouth, your nose and mouth, or your entire face. A long, flexible tube attaches the mask to a CPAP machine, which applies mild air pressure to keep your airway(s) open and unobstructed. Or, as a good friend who uses CPAP explains: “It blows air into my orifices all night, and I look like an elephant, but it’s good for me, so I do it.”
Masks can fall off, and sometimes wearers unconsciously pull them off in their sleep. (Go figure.) Many CPAP users have woken up in the morning wondering where their mask went. Dr. Rose wrote in an article in the journal Sleep Review about a dog who had been trained to put “a paw on the patient’s CPAP mask if she attempted to remove it at night.” (I would guess that not all dogs would be good candidates for this job. If I had to wear a CPAP mask and it came off, I’d probably wake up to a mass of mangled plastic covered in Gus drool.)
A reader left an interesting comment at the end of the Sleep Review article. She has apnea but can’t use CPAP because of a damaged sinus wall. She wrote that her dog Teddy has been trained to nudge her when she stops breathing. It’s usually enough to get her breathing again without waking her up, but if her blood oxygen levels go below 85 percent, Teddy barks and wakes her up.
Wow, well done, Teddy! I asked Dr. Rose what she thinks about this setup with this clever little fellow. She thought the dog was great but had concerns about the woman.
“The problem is her oxygen levels are continuously fluctuating, so this certainly isn’t ideal,” she wrote me. “Keep in mind apnea is basically suffocation, so just being warned that one is suffocating is a poor substitute for preventing it from happening in the first place. In this case I’d suggest she review options with her sleep doc for a possible oral appliance to manage her apnea. But kudos to her dog for his sensitivity and talent in being able to decipher these events, and thus to be useful once she is treated in warning her if her treatment may be suboptimal.”
Nightmares. I find this one fascinating. Dr. Rose has young patients incorporate their pets into their nightmares to help manipulate the course of troubling dreams. The dog should be sleeping close to the child, preferably right next to the bed so the child can see her and reach out and touch her.
Say a boy has been having a recurring dream involving a monster chasing him and trying to hurt him. Dr. Rose asks him what kind of superpower he’d like for combatting the monster. He says he’d be a great swordsman. She asks what his dog’s superpower would be. He says his dog could fly.
They devise a scenario where the next time he has this dream, he goes after the monster with his sword, knowing his dog is right beside him, and when it’s time, he can grab hold of his dog and they chase the monster away, from a safe distance. She has the boy rehearse this in his head and write it down until it’s engrained. If the boy wakes up afterward, the dog is right there in real life. “Even just having the dog there before sleep is grounding and reassuring for children with nightmares,” she says.
It’s a more creative version of a technique called imagery rehearsal therapy (IRT). She often uses IRT with adults who have nightmares related to post-traumatic stress disorder, although she doesn’t use dogs as partners. It’s a way of breaking into lucid dreaming so the dreamer has an element of control and can help shape his or her actions in the dream.
Sleepwalking. One of Dr. Rose’s patients has multiple sleep disorders, including sleepwalking and obstructive sleep apnea. Even with medication, she used to leave home several times a night. Sometimes she’d get hurt. If a roommate tried to intervene, she’d become aggressive. She was tired of being tired all the time, and scared that she might end up under a truck one night.
Not knowing where else to turn, the woman turned to dogs. She found an organization that agreed to try to train a dog to help with her sleep disorders. It was a gamble because this is pretty much uncharted territory. But it worked. Her dog is like an all-in-one sleep solution: He blocks her if she tries to leave her room or the house when she’s sleepwalking. He helps keep her from tearing off her CPAP mask by pawing at her or bumping her face with his nose. (She has to wear a full face mask and is claustrophobic—bad combination.) He’s there for her nightmares as well. He doesn’t wake her up, but if she awakens on her own, he’s by her side, and she calms down and goes back to sleep more easily.
Insomnia. If your dog has ever shared your bed, you will probably have one of two types of reactions to the suggestion that dogs can help with insomnia:
“Yes, I love to feel my dog beside me when I go to sleep. I feel safe, and it’s comforting to have her right there.” Or:
“Are you crazy? I can’t move with my dog on my bed. She fidgets, and she scratches, and she runs in her sleep. Oh, and don’t get me started on her gas. I’m lucky to sleep at all if she’s on the bed!”
I recently dreamed I was lying on the beach near my house, reveling in some rare San Francisco summer sunshine. I heard a far-off bulldozer. The sound sped closer—so close it sounded like it was going to run me over. And then, I regret to say, it did run me over. Not only did it run me over, but it decided to stop on my chest. It was heavy, as bulldozers tend to be. I couldn’t open my eyes and couldn’t breathe, and I felt a wave of panic.
Why is this bulldozer on me?! Why won’t it move? If I’d used my sense of smell in my dream, the next question would have been, And why does it smell like dog breath?
I finally managed to lift my eyelids, and instead of a bulldozer on my chest, I found Gus. At some point during the night he had jumped on the bed and draped himself across me—all eighty-five pounds of him. His head drooped over my shoulder at an angle, and he was snoring. I jostled him awake and somehow twisted myself up high enough that he plopped onto his cushy dog bed on the floor. Less than a minute later, he resumed snoring. I never got back to sleep.
An oft-cited survey by the industry trade group American Pet Products Association found that 50 percent of Americans let their dogs sleep on their beds. (This is not a surprise since the same group recently found that 60 percent of us think of our dogs as family members or children.)
But co-sleeping with a dog is not for everyone. It depends on the dog and the person. Sleeping next to a dog can leave you feeling groggy in the morning if your dog is large and/or mobile and you’re a light sleeper. A small study published in Mayo Clinic Proceedings concluded that dogs on beds can be disruptive, but a dog simply in a bedroom doesn’t interfere with sleep.
If you sniff around the internet, you’ll run into all kinds of warnings against sleeping with your dog on your bed beyond lack of sleep—everything from fleas to hygiene to creating dominant or clingy dogs. There’s a simple solution to most issues: Keep your dog flea-free and relatively clean. If you think your dog has dominance issues, consult a behaviorist if you’re concerned about sharing your bed. Same for dogs with separation anxiety.
As for insomnia, some swear by the relaxing effects of sharing their bed with a dog. They say minor sleep interruptions are a small price for the joy of spending the night next to their best pals.
“We found that many people actually find comfort and a sense of security from sleeping with their pets,” Lois Krahn, MD, a sleep medicine specialist, stated in an article about the Mayo study, which she co-authored.
Dr. Rose has run across this with many of her patients. She says the benefit can come just from having a dog in the room, but it appears to be greatest when the dog is within arm’s reach.
“Having your dog next to you can be deeply reassuring and comforting. If you have worries or feel anxious and can’t sleep, feeling your dog’s respirations under your hand, feeling their warmth, their chest go up and down, can really help. There’s nothing like a dog to ground you when you’ve got troubles, day or night.”