October 26, 2012
"A mosquito did that to you?"
By Susan Christensen
Health and Research News Service
It has been a record-breaking year for West Nile virus infections, but Crystal Walley doesn’t need newspaper headlines to warn her of the ravages of the mosquito-borne disease.
Reminders are all around her Wayne County home. There’s the power wheelchair parked in her dining room. The physical therapy appointments on her calendar. Even the fuschia-colored Jeep in the driveway.
Her husband, Raleigh, bought the sassy vehicle in March, a time when Crystal desperately needed a pick-me-up. It had been eight months since a July, 2011 mosquito bite brought her to the brink of death, and the mother of two feared she might never fully recover.
“I had meningitis, encephalitis and poliomyelitis,” she said. “Dr. Art Leis said it was the worst case of West Nile virus he had ever seen—that lived,” Raleigh added.
It was a sobering observation considering Leis’ credentials. The Methodist Rehabilitation Center neurologist has spent 10 years studying the deadly disease. And if not for his intervention, Cheryl Bond believes her daughter might not have survived.
“Who would think in Jackson, Mississippi you would have a world-renowned researcher who actually had a heart to care for patients,” said Bond, assistant dean of the Lucedale Center of Mississippi Gulf Coast Community College. “From the first day we got to Methodist Rehab, the staff started us on a path toward life instead of a nursing home or death.”
Crystal was on a downward spiral in a Hattiesburg hospital when her mom read a newspaper article describing Leis’ groundbreaking research. Bond called his office the next morning, and she remembers being in tears as she explained her daughter’s plight to Leis’ receptionist.
“She put Dr. Leis on the phone, and I probably spent 25 minutes going through Crystal’s story,” Bond said. “Then he said: ‘Give me the name of her doctor. She has got to be started on steroids.’”
Dr. Leis said he favors high-dose steroids for patients who begin suffering delayed neurological problems more than two weeks after the onset of WNV illness. “Early on, the immune system is your friend and helps eradicate the virus,” he explained. “But later on, the immune system can be your enemy.”
When Crystal’s immune system began attacking her healthy body tissue, the results were devastating. “She lost 40 pounds, her organs were shutting down and she was dying in front of my eyes,” Bond said. “Dr. Leis was the lifeline that gave me hope and gave Crystal her life back.”
Crystal arrived at rehab only able to wiggle her left fingers and turn her head. And it was a similar paralysis in Mississippi’s first three WNV patients that put Dr. Leis and Dr. Dobrivoje Stokic on the path to a stunning discovery.
The two Madison physicians are scientists for Methodist Rehab’s Center for Neuroscience and Neurological Recovery, And in 2002, they were the first in the world to report that WNV can target the motor neurons of the spinal cord, causing a polio-like paralysis. In the decade since, they’ve continued to explore the virus’ impact—particularly the prolonged fatigue and muscle weakness that plagues many survivors. Their latest research indicates even milder cases of the disease can damage the nervous system, which may explain WNV’s lingering effects.
“Anyone who has dealt with these patients understood even back in 2002 that there was no way that WNV fever was just another summer flu,” Dr. Leis said. “These patients have prolonged, disabling fatigue, sleep problems, recurrent headaches and difficulty concentrating and focusing attention, and this goes on for months after this so-called benign illness.”
Crystal’s severe case meant she suffered the worst of it, and her mom says she was “a literal rag doll” during her first days of therapy. “I was still so sick, if it had been up to me, I would never have gotten up,” said Crystal, 34, a former cardiac ultrasound technician at Wayne County General Hospital. But she said Methodist Rehab’s physicians, therapists, nurses and rehab techs kept her motivated.
“I remember all the love and support,” she said. “They treated us like family members. I cried many a day, and I remember one rehab tech would rub my hand and the other would sing.”
As for the therapy sessions, “they were tiring and they were wonderful,” Crystal said. She took her first steps on the hospital’s weight-supporting treadmill, a system that allows patients to practice walking even before they can bear their own body weight. And with the help of occupational therapy, she gained the ability to feed and partially bathe herself.
“If it wasn't for Methodist Rehab and my strong family and supportive friends, I would have given up on living,” she said. “They pushed and fought for me when I didn't have the strength or fight left in me.”
Crystal went home in a wheelchair, but by May she was walking on her own. She still battles foot drop on her left side and her right arm is weak, but she has a favorite exercise to address both problems. She practices working the clutch and gears on her beloved Jeep with the LUVSPNK tag. “Raleigh joked that it would be good therapy to try to drive it,” she said.
Today, her biggest foe is a crushing fatigue that makes everyday tasks seem insurmountable. “I can clean my house, but every 30 minutes I have to sit down,” she said.
She keeps pushing, though, determined to reclaim all the activities she once took for granted—like playing with her pets and spending time with daughters Maley, 13, and Ella Kate, 7. “Last year, I didn’t get to go to any of their games or take them to their first day of school,” she said. “You don’t appreciate all the little things until they are taken away.”
“It has been a crazy year and it’s still surreal that this happened to me,” she adds. “People think I’m lying. They’ll say: A mosquito did that to you?”
Methodist Rehab sponsors a West Nile virus support group that meets quarterly in Jackson and Hattiesburg. For more information, call 601-981-1234.
Dr. Art Leis, a neurologist at Methodist Rehabilitation Center, examines West Nile virus patient Crystal Walley during her stay at the Jackson hospital. In 2002, Dr. Leis and fellow researcher Dr. Dobrivoje Stokic were the first in the world to report that West Nile virus can attack the motor cells of the spinal cord, causing a polio-like paralysis, weakness and fatigue. Now, they have found evidence that even milder cases of the disease can damage the nervous system, resulting in long-term, disabling symptoms.
Crystal Walley’s favorite color is pink, so her husband, Raleigh, hoped a fuschia Jeep would cheer her up as she battled back from West Nile virus infection. As it turned out, working the Jeep’s clutch and gears became a way to exercise her weakened left leg and right arm.
After a near deadly bout with West Nile virus, Crystal Walley now cherishes all the activities she used to take for granted—like playing with her pets.
Spending time with family means even more now that Crystal Walley is finally recovering from a severe case of West Nile virus infection. From left are, Crystal, her youngest daughter Ella Kate, husband Raleigh and oldest daughter Maley.