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Madonna Rehabilitation Hospitals

GBS Survivor Shares Journey of Hope & Healing

November 26, 2019

Chris Maxwell treasures a poster-sized print hanging on the wall of his room at Madonna’s Lincoln Campus. The photograph captures the infectious energy of his four young children—Ben, 9, Sam, 6, Isaac, 4 and Hannah, 15 months. “My daily motivation,” Chris says, smiling. He’s winning the war against a baffling neurological disorder that’s upended his world.

The husband, father and successful business owner is nearly 400 miles from his family and hometown of Fort Pierre, South Dakota. Chris’ battle strategy includes a positive, enthusiastic attitude that’s infused with gratitude and hope.

In early February 2019, Chris experienced numbness and tingling in his fingers and toes, back pain and insomnia. The annoying symptoms escalated. After a routine work presentation left him exhausted, Chris sought advice from a physician friend.  Following admission to a local hospital and a battery of tests, including a spinal tap, Chris was diagnosed with Guillain-Barre syndrome (GBS). The autoimmune disorder is rare—affecting only 1-2 in 100,000 people worldwide each year. GBS occurs when the body attacks the peripheral nerves outside the brain and spinal cord. Severe cases can lead to devastating paralysis.

“It was completely brand new to me, but frankly, I was relieved,” Chris said, the diagnosis replacing fears of an inoperable cancer. “The one thing GBS gives you along the way is hope; there’s a chance for a full recovery.”

Chris was flown to Avera McKennan Hospital in Sioux Falls, South Dakota, where IVIG treatments, an intravenous process, removed damaging immune substances from his blood. During six weeks of hospitalization, his diaphragm collapsed. A ventilator and feeding tube became his lifelines. Needing extensive rehabilitation, Chris transferred to Madonna’s Specialty Hospital in Lincoln. GBS had taken a toll on his body. He’d lost 60 pounds off his 6-foot frame, and couldn’t breathe, eat, talk or even blink. His wife Mollie, and mother, Barb, took turns gently opening and closing his eyes. “I’d lost the use of my nervous system about as far as you could go,” Chris said, but his optimistic spirit remained intact. Goals written on his whiteboard served as a daily reminder: Get off the ventilator and get stronger!

Progress was painstakingly slow. “Chris was fragile, but motivated to try any tasks,” Michelle Claycomb, PT, said. “We worked together; little wins like bed mobility made a difference.” His team patiently challenged Chris to swallow, rebuild core and diaphragm muscles, and run a power wheelchair. A Passy Muir Valve atop his tracheostomy allowed the outgoing South Dakotan to find his voice and communicate. 

Chris appreciated the involvement of his family in therapy throughout his continuum of care. From bowling in the hallway to a simple game of catch with his sons, the interaction restored a sense of normalcy to life. “It gave them a chance to understand, have a little fun with me and break down those barriers that are a wheelchair, a hospital bed and the hospital in general,” Chris said.

In 10 weeks, Chris moved to the Rehabilitation Hospital, breathing and eating on his own. Reaching his final goal to walk involved rigorous, repetitive therapies including aquatic therapy; Lokomat, robotic gait retraining technology; and electrical muscle stimulation pedaling a FES bike.

“I had to reteach my body, a total remapping,” Chris said. Forging bonds with his team proved invaluable. “It becomes like your family; you build those relationships, laugh together, you can trust those people.”

Reflecting on Chris’ six month transition—from wheelchair to walker to cane and walking—is astounding. His progress continues at a post-acute rehab center. One step closer to reuniting with those smiling faces back home.

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