Waukon native Aaron Clarke recovering from Guillain Barre Syndrome; Benefit event Saturday

by Brianne Eilers

Imagine what it would feel like to be perfectly healthy and normal one day, and the very next to barely be able to walk, which then progresses into even more serious health problems.
That's exactly what happened to Waukon native Aaron Clarke earlier this year, when he was diagnosed with Guillain Barre Syndrome. Aaron first knew something was wrong March 11 of this year when he was having trouble walking. “I was just feeling weird, it was like there were no signals going from my muscles to my brain, and I felt really tired,” he explained.
“We went for a walk on Sunday morning, and he was just really lethargic,” added his wife, Laci. “He kept saying that is was like there was a ‘missing connection’. He was walking really slowly. We’d gone on a seven-mile power walk the day before, and nothing had been wrong then.”
Aaron says he first began to lose his sense of feeling in his feet, and it began to progressively get worse as the day went on. The Clarkes decided to go the Emergency Room, where they spent 12 hours before being sent home. The doctors couldn’t come up with a diagnosis at that time. The Clarkes went back home Monday and rested up a bit before heading back to the hospital. Aaron’s sensory issues were becoming worse and worse.
“He was having trouble walking, if he closed his eyes, he’d fall. He had to use his sight to walk,” Laci explained. By Tuesday, Laci had to use a wheel chair to get Aaron into the hospital, where doctors continued to run tests to try and get to the bottom of Aaron’s problems. Wednesday, March 14, Aaron saw a neurologist who was finally able to give them a diagnosis: Guillain Barre Syndrome, also known as GBS.
GBS is a rare autoimmune disorder. According to information available from Mayo Clinic, it affects only one or two people per 100,000. “With GBS, your body’s immune system is tricked into attacking your nervous system,” explained Aaron. He was hospitalized, and things went from bad to worse. “I had a severe case, my doctor said it was the worst case he’d ever seen,” Aaron noted, adding that his doctor had been practicing for 20 years.
Due to the nerve damage, Aaron became completely paralyzed, unable to even breathe on his own. He was intubated and on life support for over 40 days. He also had to have a feeding tube inserted into his stomach. He spent 30 days in ICU and 37 days at an acute care hospital. There were many complications resulting from the paralysis, including pneumonia and failure of multiple organs due to bacterial infection. “It really spiraled out of control,” Aaron said. “I came close to not making it a couple of times.”
Finally, Easter Sunday, Aaron woke up. He began to feel better and eventually was able to get off of the ventilator and have the tracheotomy and feeding tube removed. However, his road to recovery was just starting at that point. “I had to do tons of therapy,” Aaron said. He explained that when he woke up, he couldn’t even lift his hand. “It was basically like re-building all of my muscles and everything from scratch.”
He spent a lot of time doing various types of therapy in the hospital, two to three times a day. Aaron also explained that with GBS, the disorder starts by affecting the feet and lower extremities and moves upward on the body, but when a person is recovering, it’s just the opposite. “They call it ‘first in, last out’,” Aaron explained.
Laci had lost her job due to her company being too small and not having Family Medical Leave Act (FMLA) job protection, so she was able to be at the hospital with her husband every day to support him and help him out, with the help of family and friends to keep an eye on the couple’s daughter, who was four months old at the time. Aaron says it was a stressful time dealing with all of the issues at hand, but the family remained positive, and it was motivation to get better.
When Aaron was finally strong enough to be able to leave the hospital, he went home, in a wheel chair. Family and friends had been busy making ramps and doing work on the family’s home in order to make it more accessible for Aaron. He had therapists come into the home to continue working with him, and after a couple of weeks, he had progressed enough that Laci could take him to an outpatient therapy facility.
Aaron says he used a walker for a long time, then was able to use just a cane. As of mid-September, he was able to walk without using a cane or any kind of device for assistance. “My balance was still shaky, but getting better,” he noted. He continued therapy to work at getting stronger.
It has been a difficult year for the Clarkes and the road to recovery has been a challenge for Aaron. Before his illness, Aaron described himself as “not a patient person.” But, he learned to change his mentality and managed to keep a positive attitude during his whole recovery process and through the challenges he and his family have faced in the past several months. “I tried to find something good in everything,” he says.
Aaron told how he had to do some of his therapy on the same hospital floor where there were brain injury and trauma patients, an experience that he described as humbling. “It was a real eye-opener,” he said. “There were a lot of people who had it worse than me.” Aaron focused on working hard at getting better for his family and for himself, and he has come a long way in a few months. Aaron says his doctor has even been impressed with how quickly Aaron has gotten better.
Aaron still has some issues that he is working on, and admits that some may be long-term. He still has some problems with his lower extremities and with the right side of his face, but Aaron says he is remaining positive and “resilient.” He credits the help and support from family and friends that he, Laci and their daughter received during the tough times as a part of what got them all through it.
In addition to the great support they received from family and friends, Aaron also was visited by people from the Guillain Barre Foundation, who were able to provide information and support as well. “It’s a small foundation, and there’s not a lot of money for research,” Aaron noted. Aaron and Laci say they plan on giving back to the foundation that has helped them so much and also want to help others who are being faced with this rare and hard to understand diagnosis.
Aaron also got a surprise from his favorite football team, the Detroit Lions. “I love the Detroit Lions,” Aaron said. “And Laci had e-mailed the Lions, telling them about what we’ve been through.” The Clarkes got free tickets to watch their home opener from the 50-yard line at Ford Field. They also received a box of Lions merchandise.
While Aaron has come a long way since he first experienced symptoms in March, he still hasn’t been able to get back to work. Aaron’s goal is to keep working on therapy and eventually be able to get back to his job at Wells Fargo, where he has been a vendor manager for seven years. “My employer and co-workers have been so amazing too, holding my position and helping us out when we need it,” Aaron says. Laci started her new career in September as an Industrial Supply Account Manager for a company she described as “a 100% employee-owned company with great benefits.”

BENEFIT EVENT
A benefit event is being held this Saturday, October 20 at the Waukon Banquet Center in Waukon for the Clarkes. A meal will be served from 11:30 a.m. to 2:30 p.m., with a silent auction happening at the same time. A live auction will take place from 4-7 p.m., and live music from 8-11 p.m. Anyone interested in making a donation or with questions should contact Jenny Stegen at 563-794-0519 or Vicki Ahlstrom 563-380-0218.
Aaron is the son of James and Patty Clarke of Waukon, and a 1995 graduate of Waukon High School. Aaron and Laci reside in the Twin Cities area with their daughter, Chloe, who will also turn one year old October 20.