A Goldendoodle Saves a Life in This Exclusive Excerpt from Doctor Dogs

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A Goldendoodle Saves a Life in This Exclusive Excerpt from <i>Doctor Dogs</i>

Medical dogs save lives every day, using their noses to detect life-threatening changes in their human companions. From identifying cancer to anticipating seizures, these dogs are trained in specific skills that protect the people around them.

doctordogscover.jpeg In her book Doctor Dogs: How Our Best Friends Are Becoming Our Best Medicine, Maria Goodavage highlights the work these amazing canines are doing around the world. She profiles dogs who alert people to “diabetic lows or highs and other life-threatening physical ailments,” and she “reveals the revolutionary ways dogs are helping those with autism, anxiety, depression, schizophrenia and post-traumatic stress disorder.” All these good dogs expect in return is “heartfelt praise and a tasty treat or favorite toy.”

We’re thrilled to share an exclusive excerpt from the book, which follows Paul and Koira’s story. When Paul started experiencing episodes of paralysis with no warning, his family trained a puppy named Koira to recognize the episodes before they occurred. You’ll have to read the excerpt below to find out what happened, but it’s only a minor spoiler to say that Koira is a very talented medical dog.

Doctor Dogs is available everywhere books are sold, and you can purchase it here.

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When he was a child, Paul Willis loved to entertain his friends with demonstrations of his flexibility. He would twist his arms and legs in bizarre ways that made them squeamish. He’d easily put his feet behind his head. He could fit himself into the tiniest spaces—the overhead compartment of the bus, inside school lockers—by folding himself like some high- tech gizmo.

On a couple of occasions he walked by a classroom window pretending his leg was broken by facing it in the opposite direction. When the kids ran to the window in alarm, he twisted it back around, smiled, waved, and walked off.

He figured he was just flexible—like his mother, only more so. But after a while, his joints and bones and muscles and skin began to hurt. If he was awake, he was in pain. His parents sought help, but no one could figure out what was wrong.

Shortly after his seventeenth birthday, he was diagnosed with hypermobile Ehlers-Danlos syndrome, an inherited connective-tissue disorder caused by defects in the protein collagen. His mother, Vivian, would turn out to have it as well, but her physical problems were minor compared with Paul’s. Besides the pain, his joints would dislocate with ridiculously little pressure. It got to the point where he couldn’t hold a pen without some of his finger joints coming undone.

Just as debilitating were the gastrointestinal symptoms, especially severe nausea and digestive problems—common issues with this form of Ehlers-Danlos syndrome. He missed nearly all of the last two years of high school because of the effects of the illness and had to go through a special program to get his high school diploma.

By the time he was eighteen, he was in a wheelchair most of the time.

When he was nineteen, he was hit by another cruel condition. He had been having a good day, so he accompanied his mother to get a gift for a friend at Toys R Us. While there, he developed a debilitating headache. Vivian found him a seat just in time for half of his body to go limp with paralysis. He drooled on the side that had lost all muscle tone, and one eye swiveled off at a disturbing angle, out of sync with the other one.

She asked him to smile, and only half of his face moved. Her first thought was that Paul was having a stroke. They were only one highway exit away from their favorite emergency room— they’d gone there for multiple dislocations— so rather than wait for an ambulance, she had the store employees help him onto a flat- platform shopping cart and wheel him to her car.

At the emergency room, the doctor immediately called a Code Stroke, and the room filled with ten medical staffers, with everyone hurriedly working on Paul. Vivian couldn’t keep track of what was going on; it was all happening so fast. All she knew was that her son’s life could be in danger. She couldn’t believe this poor kid who’d already had such a rough go of it might now have suffered a major stroke.

But MRIs and CT scans of his brain showed no evidence of a stroke or any other brain damage. By the time Paul got back to the emergency room, he was able to move his pinkie finger. Within a couple of hours, the episode had ended. The on-call ER doctor diagnosed him with a hemiplegic migraine and discharged him.

Hemiplegic migraines are rare. Their hallmark symptom, besides a headache, is extreme muscle weakness, usually on one side of the body. It’s often mistaken for a stroke. Paul’s parents hoped it would be an isolated incident, but less than a week after his first attack, he had another episode. This time there was no headache, just sudden paralysis of half his body.

Local specialists confirmed the migraine diagnosis and sent Paul to the Mayo Clinic, where it was reconfirmed.

But soon the paralysis stopped playing by the rules and started involving his whole body. Paul would get no warning of an impending paralysis. No headache, no weakness, no aura. If he was standing up or walking, he’d drop hard to the floor. It was as if he were a marionette whose strings have been instantly severed.

If he was sitting, he would slump over. He’d usually dislocate something, often multiple joints.

He remained conscious, aware of everything going on around him. But he didn’t panic. He was logical about it. He knew he wasn’t having a stroke, so he figured there was nothing to worry about except getting his dislocated joints back in place once he could move again.

His parents were not surprised that he handled these episodes with a certain amount of serenity. He’d always been a calm kid. And now, with the average paralysis lasting an hour, he was just as levelheaded.

The worst paralyses lingered for eight hours. When Paul came out of the longer ones, he would tell his parents how boring it was to be stuck in a body that wouldn’t move. The family tried to keep him entertained. Someone might put on a movie for him. Or they’d joke with him.

When an episode ended, they’d get to the work of putting him back together again. Depending on how he fell, he could look like the Scarecrow in The Wizard of Oz after the Witch’s minions got through with him—body parts all helter-skelter, twisted in ways that would be impossible for most people.

Since Vivian, a geologist, had left her environmental- consulting job to be at home with Paul full-time, she was usually the one to start repairing him. If he dislocated both shoulders, she would pop one back in. It made her feel queasy, but once his shoulder was back and he had a hand free, Paul took care of the rest of his joints.

It was an awful way to live, but the family tried to make the best of it, keeping their sense of humor alive for Paul. After a trip to Los Angeles for an upright MRI, he became paralyzed while his parents were pushing his wheelchair along a sidewalk. They wheeled him into a tourist shop and put ridiculous hat after ridiculous hat on his head, asking if he liked or wanted each of them. One blink meant yes, two meant no. Even though he was trapped inside his body, he enjoyed the diversion.

Then one day during a paralysis, Paul stopped breathing. He could handle everything else, but not this. The inability to breathe was the start of a new and frightening turn in the disorder. Someone always had to be nearby, ready to use a manual bag- mask ventilator or race to get his bilevel positive airway pressure (BiPAP) machine, which he used at night to make sure he breathed when he was sleeping.

The only way he could communicate during paralysis was by blinking. As usual, one blink meant yes, two meant no, and now the new blink code—rapid blinks—meant he could not breathe.

It was too much. If someone wasn’t always near him in time to ventilate him until he started breathing, he could die.

While desperately researching alternative ways to help her son, Vivian found out about dogs who can alert to migraines. They already had a couple of dogs, and while they were sweet, they were not medical dog material. Vivian thought if Paul could get a migrainealert dog, they could have some warning about the paralyses. Even a few minutes would be enough time to prepare. She knew it was a long shot, but they had to try everything.

As Oscar the beagle’s folks did when they were looking to train their dog to be a diabetic-alert dog, the Willis family ended up finding dog trainer Mary McNeight. Mary ran the then-Seattle-based Service Dog Academy that focused on training diabetic-alert dogs. Her own service dog had gone from helping her with her hypoglycemia to spontaneously alerting to her migraines with no training.

Once Mary realized dogs could alert to migraines, she decided to try to help people train their dogs using the scent of their saliva before or during a migraine. She used a similar technique to help people train their dogs for diabetes.

She knew it wasn’t scientific, and that some might scoff at her techniques. But she says with the right dog—usually a puppy who can be trained early on scent—and rigorous, reward-based training by highly dedicated owners, it has worked most of the time.

“I was so surprised at first,” says Mary. “But if trained dogs can find whale poo in the ocean, it shouldn’t be a shock that trained dogs can find something right beside them. We won’t ever explore what dogs are capable of unless people like me say, ‘Hey, let’s just try this and see if it works.’”

She says that in her experience, as long as there’s some kind of biochemical change, there’s a chance a dog could alert to it. “We’re not talking trick knees,” she says. “But there’s a lot of potential for dogs to be able to alert to illnesses in areas we haven’t thought of yet. We just have to try.”

Paul’s migraines were different from those of any of her other students, but Mary was fairly confident there was hope, although she couldn’t guarantee success. She directed the family to a breeder that was about to have a litter of goldendoodles. This breeder was known for producing high- quality, successful service dogs, and Mary felt one of these pups would give Paul the best chance.

Paul’s family was able to secure a puppy. When Koira was seven weeks old, the breeders hand- delivered Koira from Idaho to the Willises’ Southern California home. They were driving Koira’s brother and a couple of Great Danes to the area, so the Willises’ house was on the way.

Koira’s name was originally going to be Dog. Paul had always wanted a dog with the name Dog. But she wouldn’t respond no matter what they tried. He eventually gave up and decided to name her Dog in another language. He settled on the Finnish word for “dog,” and Dog became Koira.

She was the size of the family’s little bunny when she arrived. They all fell in love with her immediately. She was sweet, affectionate, and calm, even as a newly arrived puppy.

Training began the next day, using homework Mary had given them.

Every half hour, Paul would chew on a cotton ball. Unless he had a paralysis within a certain window of chewing on the cotton ball, he would throw away the sample. Mary felt this would give the puppy the best chance of smelling a change in Paul. She had taught the family a special technique to create many samples from one. This was important since they wanted to give Koira fresh, new samples, not ones she had alerted to before.

They trained her to associate the smell of the scent with good things—just as Luke’s pup, Jedi, had been trained for his diabetes. Vivian punched a hole in a paper bowl and set it inside another paper bowl that had a cotton ball with Paul’s preparalysis scent. They fed Koira a little kibble at a time in the top bowl so she could pay attention. Each new meal got new bowls and a new sample. Food was always paired with Paul’s “pre-paralysis.”

After a couple of weeks, the family began training Koira to paw at the sample as someone held it. They hoped this would eventually become her alert. It was a work in progress when they packed up and headed to Seattle, for classes with Mary. Koira was three months old.

Koira gave her first alert at the rental car counter at the Sea-Tac Airport. She had been calm, as always, but became a jumping bean, bouncing all over Vivian and then Paul, and licking Paul’s face rapidly while he was sitting. They’d never seen her like this before. Within a few minutes of getting into the rental car, Paul slumped over in paralysis. It was a relatively brief attack, and he could still breathe.

“Afterward, we’re thinking noooo, that was just coincidence,” says Vivian.

They settled into the hotel, and Koira began the same oddly energetic behavior again, jumping around and licking Paul’s face.

“By that time we’re like we know what she’s doing. We gave her a whole bunch of treats,” says Vivian. A few minutes later, Paul became paralyzed.

When Mary heard that Koira was trying to tell Paul and Vivian about an upcoming paralysis, she was thrilled. She decided it was time to refine the alerts, and by the end of the four-day course, Koira had learned a more proper alert. She would paw at Paul, gently but insistently, and stare at him as she did so, as if searching his soul.

In a matter of months, Koira was solid with her alerts. She could warn Paul thirty minutes ahead of an impending episode. If Paul wasn’t paying attention, she automatically sought out someone else. And if he collapsed and no one was around, she’d make it her job to find someone.

“She is a wonder dog,” says Paul. “She saved my life so many times. Besides that, I was relieved not to have to crash to the floor anymore.”

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Photo of Paul and Koira on the couch by Maria Goodavage

But there was no rest for Paul. Shortly after Koira was able to alert to his episodes, he developed a disorder that was equally dangerous and far more painful. Instead of his muscles completely losing tone and being unable to move, they did the opposite. They gripped and contracted all over his body. Imagine the most agonizing charley horses or foot cramps, only in every muscle.

He had the worst form of dystonia. It took over his body, including his throat and mouth, twisting him out of control. About a quarter of the time, he was unable to breathe. With paralysis, emergency ventilation was straightforward. With dystonia, it was difficult to get air into him without strength and determination.

As if all this wasn’t bad enough, because of his Ehlers-Danlos, these muscle contractions caused numerous dislocations, with multiple bones often being thrust out of their sockets. Like his paralysis, his dystonia attacks came on with no warning. Sometimes an attack would start in one large muscle, but there was no time to do anything before it snaked its chokehold around his body.

A neurologist at the University of California, Irvine, thought it was impossible that he was getting these dystonia attacks because of a physical problem. “You can’t have these seizures concurrent with a paralysis disorder,” she told them. “It doesn’t work that way.”

She thought he had a condition called conversion disorder, where anxiety or trauma causes psychological symptoms to “convert” to physical ones. She didn’t want to treat him further until he got psychiatric care. He and his parents were livid. “Just because standard testing couldn’t find something, the experts shouldn’t assume it’s a mental illness,” says Vivian.

A psychiatrist saw him twice. For his second (and what would turn out to be his final) visit—when she decided he didn’t have conversion disorder—Paul purposely wore a T-shirt imprinted with the caption “I’d love to stay and chat, but you’re a total idiot.”

He never went back. His parents supported the decision. But they despaired that Paul had to face another strange and life-threatening rare disorder with so little help. He’d been through so much. Why him? And what could they do?

One day when Koira was alerting to a paralysis, Vivian had a thought.

“Wouldn’t it be nice if she could alert to dystonia?”

“Maybe she can!” Paul said before paralysis struck.

They consulted with Mary. She told them it shouldn’t be a problem to train Koira on a second alert and encouraged them to try. They did the training much the same way, only with a different alert. They chose “sit pretty,” where she would sit on her haunches with her two front paws resting in front. At first she would fall over, but after she strengthened her core muscles, she was a rock.

A couple of months after they started training, Koira sat pretty on her own for the first time. Five minutes later, Paul was in full-body dystonia.

They didn’t dare to get excited. They thought it could be a coincidence. But when it happened again a week later, Vivian had Paul’s alprazolam ready, and it significantly diminished the episode. Shortly after, they trained her to fetch his medicine pouch when she detected the scent, so Paul would be able to self- administer the medicine.

Paul was having about three to six dystonia episodes a month, and ten to thirteen paralyses. Koira never missed a paralysis alert. Paul could be showering behind a closed bathroom door, and she would scratch at the door until she got his attention. Sure enough, a half hour later, he was down. She rarely missed a dystonia alert either—only if she was too far away or sleeping.

Even with Koira’s help, the attacks—on top of the Ehlers-Danlos—were taking a toll. The medicine for dystonia was slowly losing its effectiveness. And his paralysis could be brought on by something as simple as turning his head.

The family decided to consult with a New York neurosurgeon known for his work with Ehlers- Danlos to see if he could offer any ideas on how to help Paul. During a videoconference with him, he suggested they try traction the next time Paul was paralyzed.

He asked them to take hold of Paul’s head and pull it up and off his neck. They thought it was ridiculous. None of them wanted to try it. How could pulling his head up stop his paralysis? They ignored his advice until just before their next video appointment, when they realized they hadn’t done their homework.

The next time Koira alerted to Paul, he sat on the couch in the living room and waited for the paralysis. He sat in a position where he wouldn’t slump over and fall onto the ground.

When the paralysis descended, his mom got behind him and carefully lifted his head up toward the ceiling. At first nothing happened, but then she hit the sweet spot, and Paul could talk and move again. She was so shocked she almost dropped his head back down.

“You can move?”

“Yes!” Paul said, and wiggled his arms and kicked his legs to show her.

“And everything feels normal?”

“Yes, totally normal!”

“This is amazing!”

“I know!”

“Is it OK if I put your head back down? It’s getting heavy.”

“Yes.” When she lowered his head back down—it was like holding a bowling ball and she couldn’t keep it up for long—he became paralyzed again. She felt terrible that his ability to move was in her hands in such a literal way.

“Can you move now?” He blinked twice—their signal for no.

“Do you want to try again?”

One blink.

They repeated the success. A few days later, when Paul’s dad was home, they were able to take a video of another paralysis and demonstrate the wonders of manual traction. They sent it to the neurosurgeon, who was as delighted as his parents were to see such clear evidence of what he thought the problem could be.

After more MRIs, CT scans, and a test traction system complete with pulleys, the neurosurgeon determined that Paul’s paralysis was not caused by any kind of a migraine after all—and that it was, in fact, related to the dystonia. Even if his scans had not showed anything clearly—he said they often don’t in cases like his—the doctor would have been confident in his diagnosis because of Paul’s symptoms, and his improvement with the traction.

The cause of both disorders seemed to be a pathological instability of his craniocervical junction—where the skull and the upper spine connect. People with Paul’s type of Ehlers-Danlos syndrome often have troubling spinal instability. The craniocervical junction tends to be where the most severe symptoms appear.

His mother explained the root of the problem to his sister in the simplest way:

“Basically his brain stem is being squashed.”

They marveled that Koira, trained to alert to what they thought were hemiplegic migraines, had been able to sniff out the chemicals associated with something completely different. Human doctors usually need to know a diagnosis to treat a disorder. Doctor dogs just need the scent.

“It turns out it doesn’t matter that we didn’t know what Paul really had, as long as the scent was consistent, and it was,” Vivian says. “We are so amazed by Koira, so grateful. Without her, Paul would not be here now.”

During the next year, Paul would undergo two surgeries to fuse his spine from his skull to his C6 vertebrae, with his skull held in the correct position by bars and other hardware. The paralysis and dystonia initially disappeared after the first surgery. Koira didn’t have much to do other than keep him company. She seemed depressed. She didn’t want to play as much and stopped listening to commands.

“It was like she felt she lost her purpose. She couldn’t help him anymore,” says Vivian. They started training her to do things like turn on and off lights, and fetch certain objects. Having a job seemed to help pick up her spirits.

But six weeks after the surgery, the paralysis and dystonia came back. Even though it had been so long since Koira had needed to alert, she was on it, pawing at him and giving him warning. His first paralysis was fierce, sending him to the emergency room because he passed out, had a seizure, and stopped breathing. Even with the alert, he dislocated four fingers and a collarbone. Doctors implanted a breathing pacemaker so his diaphragm would keep working during paralysis.

Since the second surgery, in June 2017, he hasn’t had an episode of dystonia or a paralysis related to his craniocervical instability. But Koira is still gainfully employed. For a few years, Paul had been having less-troublesome episodes of paralysis—different from the ones that had come without warning. This had been diagnosed as hypokalemic periodic paralysis (HKPP), which would start as weakness he often dismissed as regular fatigue, but would render him a rag doll if he didn’t get potassium into his system stat.

Koira had never picked up on those, probably because they had a different odor. Not long after Paul’s second fusion, a couple of dogloving friends were visiting and suggested the family train Koira on the HKPP episodes. It would give her something to do, and would help Paul know he needed to take immediate action. These paralyses didn’t happen often and seemed to be triggered by physical exertion. But the family decided to do what they’d always done. They gave it a try.

They trained her for a few sessions with cotton balls infused with Paul’s saliva taken a few minutes before an HKPP episode. The next time he had one of these paralyses, she alerted. The family was thrilled.

Her alert for HKPP is different from her other two alerts. She stands on all fours and hops her front legs up and down a couple of inches, like an excited dog inviting another dog to play. You can’t miss it.

Besides helping with his HKPP, Koira has also become a mobility-assistance dog for him. The worst complications from his Ehlers-Danlos may be gone, but it’s still a serious condition, making it difficult for him to change positions or pick things up.

Now that she’s down to just one detection job, and an intermittent one at that, Koira has taken quickly to her new responsibility. She helps brace Paul when he gets out of bed, or when he needs to go from sitting to standing, or when he needs help with balance. She also picks up objects for him.

He started school again that fall, taking a couple of classes at community college to see how it would go. Just three years earlier, it had seemed impossible he’d ever be able to do anything without a wheelchair, or even hold a pen again without dislocating several joints in his fingers. His life was a series of unpredictable brushes with death, and the worst pain he’d ever experienced. And here he was, walking into classes like most of the other students, only with a canine companion. He could write again, thanks to intensive physical therapy for his hands. And he didn’t have to worry about death lurking around every corner.

This dog had been there for the worst of it, helping him survive against the odds. Now she was at his side for this next adventure. She has proved to be a great social lubricant, helping Paul meet several new friends.

He has now gone back to school full-time, with a goal of getting a degree in economics. Koira goes to all his classes with him. He’s hoping that in addition to everything Koira still does for him, she might be able to help get him a girlfriend.

“Look at everything she’s managed. If she knows I’d like a girlfriend, she might do something about it—right, Koira?”

Koira, who had been sitting next to him on the couch, leaned against him and licked his cheek.

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