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Once trapped inside his own body, he's recovering from a bizarre paralysis

Saint Paul Pioneer Press - 10/14/2018

Oct. 14--"Imagine being 100 percent able to hear what is going on and understanding every conversation that is being had without any way to communicate. You are encased in your own body unable to move, breathe on your own, itch a scratch or communicate in any way, verbal or non-verbal." -- Allison Auger, on CaringBridge

Paul Auger, mayor of White Bear Lake from 1995 to 2010 and an avid golfer and skier, sat in his auto-repair shop on Tuesday watching his employees work. His cane rested on a nearby workbench and his hands, still damaged by the Guillain-Barre syndrome that changed his life, fumbled with the TV remote control.

"I wouldn't wish this on anyone," he said of his ordeal.

The above blog entry, written by Allison Auger about her father on his CaringBridge page Jan. 25, 2017, describes the affliction that kept him hospitalized and in therapy for more than a year.

His trip "through the looking glass" as he describes it, started at work Jan. 16, 2017, with a tingling sensation in his right foot.

His wife, Anne, and daughter Lindsay Cramer, both former Southwind Princesses for the St. Paul Winter Carnival, were at a royal function that evening, and Auger, 65, was asked to baby-sit his then-13-month-old grandson, Waylon.

Before he left Auger Garage on Bald Eagle Avenue, owned by four generations of his family, his foot went from tingly to completely numb.

By the time he got Waylon home to his daughter's house, he couldn't stand. He crawled over to the car door, got his grandson out of the vehicle and together they crawled into the house. He fixed dinner while on his knees, propping himself up on the kitchen counter with his elbows.

"I texted my wife and said, 'Don't panic, but for some reason my right foot is gone,' " he said. Concerned, his wife and daughter cut their evening short and came home.

He insisted that he was fine, that he wasn't in any pain, and that if it still bothered him, he'd go see a doctor the next day.

Dubious, they complied with his wishes, made a bed for him on the floor and retired for the evening.

DESPERATE TO COMMUNICATE

"At about 4 a.m. we woke when he was calling for us. He rolled over and could not roll back or move after that. He couldn't move his arms and was having a hard time breathing. We called the ambulance then, he was nervous that he couldn't cough to clear his throat and at this point couldn't even sit up." -- Allison Auger, on CaringBridge

Within days, Auger was paralyzed. He couldn't breathe on his own. He couldn't swallow. He couldn't even close his eyes.

"I couldn't feel any of my body," he said. "But my brain was quite aware. I could hear everything that was going on. All I could do was stare at one spot on the ceiling."

Doctors at St. John's Hospital in St. Paul diagnosed him with Guillain-Barre syndrome, a rare disorder in which the body's immune system attacks the nerves. The exact cause isn't known, but the disorder often appears days or weeks after a respiratory infection. Auger had been sick with a chest cold that turned out to be pneumonia, a possible trigger.

Dr. David Bradberry Jr., a St. Paul physician who specializes in physical medicine and rehabilitation, said when the nerves are attacked, their electrical signals to muscles to execute functions are blocked.

Some infections, like Auger's chest cold, have an invasive organism that, on a microscopic scale, looks to the body a lot like the myelin sheath that protects the nerves. The body gets confused, thinks that sheath is an invasive organism and attacks it, he said.

In his practice at the Courage Kenny physical therapy center at St. Paul's United Hospital, Bradberry says, he sees a Guillain-Barre case about once a month, typically resulting in muscle weakness in the arms and legs or the legs only. He has seen severe cases like Auger's, in which a person's entire body is affected, but they are not as common.

As Auger lay in the hospital wondering what would become of him, he listened to the conversations in the room. He learned that Guillain-Barre was rarely fatal if the patient is able to get treatment, and that it was possible he could completely recover.

Knowing this helped calm him when he heard the doctors discussing his condition with his daughter Lindsay.

"They told her I may not get any better," he said. "They told her there might come a time when they would have to think about unplugging me."

He heard his daughter cry and tried desperately to let her know somehow that he would get better.

"I have to show proof of life," he said to himself. "I've got to get something to move. It was so frustrating."

But nothing would move. Not even his eyelids. He lay that way for about three weeks.

SIGN OF LIFE

Treatments for Guillain-Barre vary, depending on the severity of the paralysis, Bradberry said.

"This is a disease where the vast majority of people get better on their own," he said. Those with mild muscle weakness may receive medicine for pain, but doctors typically take a wait-and-see approach and let the body heal itself.

In Auger's case, he needed more help. He couldn't breathe on his own, so a ventilator was installed. He needed to be fed to keep his body nourished while it recovered. And he needed an additional treatment in which his blood was run through a machine that extracted the excess white blood cells to slow the damage they were doing to his nerves.

On Feb. 10, he opened his eyes. It was the beginning of a long recovery fraught with many setbacks, but it was the first sign of life his family had seen, and they were overjoyed.

"It was a glorious day that brought us all joy and renewed hope. Lindsay and I got to help with his PT which was awesome! It was so wonderful to see Dad's eyes again and aid in his therapy." -- Allison Auger, on CaringBridge

For Auger, it was a new level of frustration. He had so much he wanted to say to his family, but he could only blink and slightly shake his head. Thus began weeks of family charades, as they wrote words on a board, offered multiple guesses and tried their best to read Auger's aggravated face. His first desperate message was that he really needed his glasses to see what they were doing.

Unable to speak because of the ventilator, he tried mouthing words, hoping his family could read his lips. He and his family recalled one particularly exasperating day.

"He was mouthing something to us and we couldn't figure out what he was trying to say. He was getting very upset as his mouth was opening bigger and his eyes were very big. After going down the list of yes and no questions, to which none of them satisfied what he was trying to tell us, he pierced his lips, rolled his eyes, and was beet red." -- Allison Auger, on CaringBridge

Auger said that day, he was trying to tell his daughter that he loved her. She had leaned over, told him she loved him and she would see him later. He tried to repeat her words back. In his mind, it seemed like the simplest thing, but his family could not understand him.

"As she was leaving, she was crying. She thought she had pissed me off," he said. "She hadn't. I was just so frustrated over something so easy."

HALLUCINATIONS AND DREAMS

In the meantime, Auger's brain was tripping, blending reality with a dreamlike state. He hallucinated at times, asking his family if they could see the brown, shaggy-haired dog that visited him every day or the wiener dog that looked in on him from a hole in the ceiling. They could not.

When he slept, he dreamed vivid scenes he can still remember. What's stranger was dreams would stop when he woke up and pick up where they left off when he went back to sleep.

"I had a never-ending dream," he said. "I was still walking, driving a car, smoking a cigarette. It was like I was living a whole other life."

Procedures done to him, such as being intubated, affected the dream. At one point, he dreamed that his wife had an affair with his dentist and hired someone to kill him, but that the hit failed and he survived.

When his wife would visit, he would sometimes glare at her, thinking what he had dreamed had actually happened.

"It was scary," Anne said, about the hateful look in his eyes.

Bradberry said he did not know if vivid dreaming was typical for extreme cases of Guillain-Barre, or why it would happen. Auger said other patients he talked to at Courage Kenny said they had experienced similar dreams.

A Catholic who grew up next to St. Mary of the Lake Church across the street from his shop, Auger said his faith in God helped bring him peace.

"There were times I was just a mind floating in space," he said. "I talked to my Maker quite a few times about the strangeness of life in general."

SLOW ROAD TO RECOVERY

Eventually, Auger was moved to Bethesda Hospital in St. Paul and finally to Courage Kenny Rehabilitation Institute in Golden Valley, where he met others recovering from Guillain-Barre and some recovering from accidents and strokes.

A few of them formed a brotherhood and encouraged each other to improve, making a goal to be able to move their hands enough to operate motorized wheelchairs. Once they could, they enjoyed their newfound freedom, riding around the rehabilitation center like a motorcycle gang.

Financially, Auger says he's doing all right, thanks to a community fundraiser and disability pay.

Blood clots, a kidney stone and a broken hip this year slowed his recovery. He describes his hands as feeling like the Pink Floyd song "Comfortably Numb." His legs feel like they are swaddled in bubble wrap and duct tape.

Bradberry said there is a small population with Guillain-Barre that never completely recovers because nerves have been permanently damaged.

For Auger, whom current Mayor Jo Emerson describes as a "strong and determined man," partial recovery is not an option.

His biggest motivation has been his two little grandsons. He plans to teach them to golf, ski and swim as he did his older grandchildren.

Auger continues to go to physical therapy once a week and talks to his hands and feet, telling them they have one year to become functional again. That's when Waylon turns 4 and can go skiing.

"I have to be ready by next year," he said. "That is my goal."

___

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