Survivors' tales show need for West Nile vigilance
Disease can be life-altering, debilitating
By MIKE DUNNE
Advocate staff writer
It was just a little mosquito bite -- a part of life in South Louisiana most of the year.
But that little bitty bug changed the lives of hundreds of Louisiana residents since West Nile virus made its appearance in Louisiana in 2002.
Just about this time every summer, human cases of the bird flu start to pop up across the state.
Already, four people -- three from Livingston Parish and one from Iberville Parish -- have become the first human cases of the mosquito-borne disease for 2005.
Last year, there were 114 cases of West Nile and seven deaths, and in 2003 there were 122 cases and seven deaths from the disease. The year with the highest number of West Nile cases in Louisiana was 2002, when the state experienced 329 cases and 25 deaths.
For most people bitten by an infected mosquito carrying West Nile, their immune system is strong enough to fight it. Only one of five people bitten will develop flu-like symptoms. Twenty percent of those who show symptoms will have a more severe case, with paralysis, nerve and brain damage, and even death.
Some of the survivors say that people really don't realize how dramatic life can change because of one little mosquito bite.
Baton Rouge real estate agent Della Neely, retired Exxon Chemical worker T.J. Starkey of Hammond, and former truck driver Lawson "Boogie" Threeton of Baker all say their lives have been turned upside down.
"Boogie" Threeton knew at an early age what he wanted to do: drive trucks.
Today, he misses the smell of diesel. Threeton can't drive a truck anymore -- his accelerator foot and leg still suffer from some paralysis.
"It just ruined my life," he said in his Baker home recently.
Instead of commanding a big rig down the highway, he travels in a small pickup truck with an automatic transmission and a left-footed accelerator.
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It started with a bite
Last October, Threeton thinks, he was bitten by an infected mosquito in Alexandria, where he was spending the night while driving. But he really isn't sure.
Like most victims, Threeton's first symptoms were flu-like. "And, my (right) leg was giving out on me." Soon there was intense pain from the buttocks to the toe. After having made a quick trip to the doctor, Threeton found himself in Lane Memorial Hospital in Zachary, seeking relief. The nurse suggested it might be West Nile.
Wife Debbie said: "He was some sick in that hospital. I didn't think he was going to make it." Drugs used to treat him "couldn't seem to do much," she said.
His fever spiked at 104 degrees, and the pain in his leg and buttocks lasted for about 30 days. "It was severe pain - crying pain," he said.
The disease has damaged the nerves and muscles in his right leg. He was told by doctors that the best he will ever get out of his leg is 70-80 percent of the strength and mobility he originally had.
Months of physical therapy followed. He found a physical therapy machine that "helped re-educate me on how to walk. I stayed on the machine for about four months" and was able to reach "about walking speed." But, the doctors said his leg reached a plateau where little else was going to help.
He now wears a brace on his leg from the knee to his ankle and walks with a cane.
"It changes your life," he said of his West Nile experience. "I became the housewife," he said with a smile. Debbie, who works for the state Department of Education, smiles. "He does what he can," she added.
He adds that he will not do windows.
The two said they used to have a lot of birds around their home north of Baker off Bentley Drive. "We used to feed them, but we don't any more," Debbie said. The bird bath still attracts birds and gets a lot of use, but the Threetons dump the water frequently because they don't want to breed any mosquitoes.
Having to ignore the call of the road is still difficult, Boogie Threeton said. "When I get out on the interstate and see those trucks," he said, shaking his head and pausing. "It's tough.
"I don't think I will ever drive (trucks) again. I don't know what I am going to do. I had 10 more years and I was gonna quit."
But a mosquito changed that plan.
"My mother has the philosophy that everything happens for a reason. I just haven't figured it out yet," Boogie said.
He and Debbie feel people should know what can happen if you're bitten by an infected mosquito. "Take precautions; you never know what's going to happen," Debbie said.
Boogie chimed in: "People probably won't."
Now she knows
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Della Neely now says she should have taken precautions, such as wearing mosquito repellent.
In 2002, she spent a month caring for two horses that contracted West Nile virus in the lot behind her home near Bayou Duplantier east of Lee Drive. Being 44 years old at the time, she didn't think she would be at risk. The doctors were saying it affected primarily the old and infirm.
"I remember the mosquito bite on my right arm," Neely said, the only one of the three West Nile survivors who thinks she knows exactly when she was infected. "I remember feeling this," she pauses, looking for the right word, "sensation."
A few days later, "it was like I could hardly keep my eyes open. It was like I had taken five Benadryls. I had lots of pain in my shoulders, my joints, my hips."
"It was like a feverish, altered state," Neely said.
Her husband, Paul, came home and noticed she wasn't speaking. She managed to get out that she needed to go to the hospital.
She and Paul told doctors they thought it might be West Nile, since the horses had just had the disease. First, they tested her for the possibility of stroke, heart attack, drugs, alcohol poisoning, even early menopause.
Finally, a blood sample tested positive for West Nile. When the results came in, she had already gone home and ignored requests to check into the hospital.
"What are they going to do for me?" she asked, noting that there really is no treatment - no antibiotic or drug - that could cure her of the disease. Doctors can only treat the symptoms, like fever.
"I literally stayed in bed," Neely said of the next several weeks. "There were days and days when I literally could not roll over," she said.
From time to time, she would seem to come out of the fog and then return again, she said. She knew it was coming back when she felt pain in her jaw and hip and her energy fading.
She had returned to doing some activities, but when she felt what she calls a "spell" coming on, "I knew I had to get home fast."
The spells would "last five, six, seven, eight days and then I would not have it for a couple of weeks." Then another spell would hit.
The spells have been shorter and further apart over time.
She said she realized life had to change, especially the pressure-packed one she had been living before the bite.
"I had to become extremely better organized. I took off the better part of last year – seven months – reorganizing my life," she said.
She moved her business out of the house and into Laurel Lea shopping center to make being home less stressful. "I got rid of a lot of stuff" and gave up some hobbies, like working in her yard or taking on abandoned wildlife "babies" and rehabilitating them.
She hasn't ridden her quarter horse that suffered from West Nile, assuming that if she feels the effects of the disease, he probably doesn't need someone on his back. She missed a whole season of her beloved LSU Tiger football.
Multi-tasking is a habit of the past, she said. She eats better and works harder at relaxing more.
"I can always make more money; I can never make more time," she said at least three times during an interview.
She has become more spiritual. "I try to think healthy thoughts," Neely said. And, she appreciates that her case was not worse. "I have talked to people who can't raise their arm" from the effects of West Nile virus, she said.
One such person is Twila Jean "T.J." Starkey.
Paralyzing effects
T.J. attempted to be careful about being bitten by mosquitoes, having heard in 2002 about a new disease circulating between birds, mosquitoes and humans.
She remembers having a few mosquito bites on her legs around July 4 that year. That was when she and her husband, Joe, were headed to the Atlanta area to visit some of Joe's children. The night before, T.J. felt bad, but decided to press on.
She'd get better. Just felt like a little flu or maybe a sinus infection. Joe had been sick the week before, so a flu bug made sense, she recalled.
By the time they had driven to Atlanta, "my legs had gone out from under me. Those were the first symptoms." The next day, Joe had to carry T.J. into the hospital. She would stay in a medical facility of some sort until December 2003.
She remembers getting a spinal tap at the hospital. "I remember the needle going in."
For the next several weeks after that, any memory is provided by Joe, who watched her lay under a refrigerated blanket, have two pacemaker implants, a food tube installed in her stomach, and other medical procedures.
For the first 12 days, T.J. seemed constantly surrounded by "a sea of white coats," Joe said, as doctors first tried to figure out what happened and then were gawking at the first case of West Nile virus most of them had seen.
T.J. was loaded with different medications until West Nile was diagnosed. "There is no effective medication," Joe said he was told.
She has only limited memory. She remembers people standing around the bed "yelling my name, trying to wake me up." She remembers being unable to respond at all.
Eventually she began to regain consciousness. "It wasn't a wake-up," T.J. said, snapping her fingers "but more a period of coming in and going out … . It took a long time to start being coherent."
Joe, who now had time on his hands and the keys to the hospital's medical library, researched the drugs T.J. had been given and persuaded doctors to reduce or stop her dosages. They feel that helped her regain some consciousness.
Joe said "the awakening stretched out months and months."
T.J. said just "communicating took a long time. Part of my face was paralyzed." She could point a bit -- use of her arms had come back. Sometimes she could slowly write, letter by letter, with Joe's help. "She had to put a lot of effort into it," Joe said.
Eventually, she was well enough to fly by jet ambulance back to Louisiana, where she first was hospitalized in Hammond. They later moved to a Kenner facility and then a nursing home as T.J. slowly fought her way back to some semblance of an active life.
Since she has returned home, the focus is on being able to walk again. Both she and Joe confidently believe she will walk. Recently, she walked 68 feet with a walker. Such an effort sometimes can make her feel "like I just ran a five-mile race."
She has tried machines to work her leg muscles and even horseback riding, which helped her regain the ability to balance her body for walking. "They even would put me on sideways and backwards, so that my brain would not anticipate" which way to flex when the horse took a step. That therapy was in Baton Rouge.
Already religious, the experience has made both Joe and T.J. much more spiritual, they say.
"I know I was so close to death multiple times, but God just wasn't ready for me," T.J. said. She is sure that God had a purpose in her getting West Nile virus.
"I have been hope for hospitalized people who had no hope," T.J. said. For example, while in a nursing home beginning rehabilitation, often older patients who knew they would not get better encouraged her to work hard. "They gave me so much encouragement."
Now, she is doing physical therapy three days a week in Hammond. "I know people are watching me – I am an example. I always try to keep smiling" no matter the pain, she said.
One of her fellow rehabilitation patients recently presented her with an electric fly-swatter. "I know a mosquito did this to you. I want you get revenge," the woman told T. J.
She finally used it on one of the bugs.
"It felt pretty good."
