Living With Guillain-Barré
Dec 16, 2019 06:07PM
By Tamsen Butler
“It was weird.” That’s how Dan Hamilton describes what it was like to suddenly lose the ability to do things he took for granted such as walking, talking, and swallowing food. In May 2019, he was working two cooking jobs, one at Waubonsie Station in Tabor, Iowa, and the other at Children’s Hospital & Medical Center. A regular day would include standing for most of the shift, being around a hot stove, and plenty of knife work—dangerous work if you’re not careful. “I was stressed and under pressure to make ends meet for my family.”
The weekend before Memorial Day he was driving home from his second job when he noticed something was wrong. “My glasses were hurting my eyes and I had double vision,” he said. Instead of seeking out medical care the next morning, he headed into work. “I drove…with my hand over one eye so I could see,” he remembered. He wondered if he should call in sick, but forged ahead to Children’s Hospital.
Once he arrived, he said, “My limbs felt like Jell-O, like I had just worked out. There was lots of fatigue.” He got through the day by taking frequent breaks to sit down but left an hour early. “I knew something wasn’t right.”
Upon returning home, Hamilton told his wife, Kim, he wasn’t feeling right. She insisted they visit an urgent care facility together. They had both felt under the weather for around three weeks, but these were new symptoms. At the facility, Kim was diagnosed with walking pneumonia and Hamilton was diagnosed with an upper respiratory infection. “That sounds about right,” he thought. “I started antibiotics and steroids, ate dinner, and then went to bed.”
“I woke up the next morning and tried to get out of bed but I fell forward—my legs weren’t working.” Hamilton struggled to stand and made his way up the stairs to the living room by holding onto the walls. “I had a really difficult time walking up the stairs. My mother-in-law, who was staying with us since being evacuated from the floods in Pacific Junction, said, ‘What’s going on there Dan?’ I collapsed onto the couch.” His wife took one look at him, then they headed to the ER.
Hamilton was given a CT scan, an MRI, and a spinal tap at the hospital. “They thought it was meningitis, but I didn’t have a fever. While they were checking off all the boxes, one doctor in the room said, ‘It could be Guillain-Barré.’” After some further tests, a physician turned to Hamilton’s wife and said, “Don’t Google it.”
She did, of course, and was shocked by what she found. “I hope it’s not Guillain-Barré,” she said to Hamilton. “I asked her what the internet said, and she wouldn’t tell me,” Hamilton said.
Guillain-Barré involves the body’s immune system attacking portions of the nervous system, resulting in varying levels of paralysis. The disorder presents in different ways for different people. Some notice problems with coordination, others experience complete paralysis, and some die from the disorder.
By the next day, he couldn’t move his arms or legs. “I was paralyzed from the neck down,” he said. He received the Guillain-Barré diagnosis and began treatment. He received a transfusion of antibodies from donors and was transferred to UNMC.
Recovery was slow. “I needed a lot of help with everything. I could only eat chicken broth and ice cream,” Hamilton said. His senses were disturbed—foods he normally loved tasted bad, he was incredibly sensitive to touch, and spent days in his hospital bed wearing sunglasses because the sun shining through the window was too much. “They explained to me that my neurons were hypersensitive,” explained Hamilton.
It was particularly strange for Hamilton, whose cooking career already spanned 22 years, to not be able to taste food correctly. He is a self-taught cook with no formal culinary training, so to hold the position of head cook at Children’s Hospital—yet suddenly not be able to taste food correctly—proved problematic.
It was a week before he could use his fingers again. With use of his fingers, he used his smartphone to research his diagnosis. “I researched and found there’s no cure,” he said. “I got emotional thinking about my wife, my kids, and my job.”
Hamilton spent most of June at Madonna Rehabilitation Hospital. “I had to relearn everything—texting, swallowing, and speaking correctly.” He worked hard to retrain his body. “Now, I feel pretty good,” he said. He encounters weakness and decreased stamina, and notices he is more emotional now. “I’m more impatient.”
Nowadays, “I can breathe, swallow, drink, and use my hands,” Hamilton said. “I don’t have two jobs anymore. Having just one job makes a big difference.” He returned to work in September 2019, but needed to modify his work schedule because of his decreased stamina. He started by working shorter, five-hour shifts, but said that only lasted a week before he was back to a regular 40-hour week. “Children’s Hospital was very gracious. They offered me a chair to work in and allowed me to take extra breaks. They were very accommodating.” In true service industry fashion, he’s now working full shifts without additional accommodations.
He can’t know if he’ll experience another flare-up of paralysis. Guillain-Barré affects people differently, so there is no way to know what to expect in the future. “It seems the only thing everyone with Guillain-Barré have in common is stress—pushing through, trying to make that money to pay those bills,” he said. “The bottom line is, I need to take care of my body. I didn’t pay attention to what my body was saying.”
He said the experience put everything in a different perspective. “Value loved ones more. Work and paying the bills isn’t everything. Enjoy life and the people around you. I thought I was dying. It’s a scary thing to think and feel.”
“I’m very blessed to live to tell the tale,” Hamilton said. “I’m happy I’m here.”
This article was printed in the January/February 2020 edition of Omaha Magazine. To receive the magazine, click here to subscribe.