Wednesday, April 21, 2004
La Crosse Tribune
Sometimes people who know Joe Neitzel forget he has multiple sclerosis. Neitzel looks good and goes to work every day as a engineer for Creative Laminates. In fact, the 42-year-old Holmen, Wis., man hasn't missed a day of work except for medical appointments since being diagnosed with MS in April 2002.
"Part of the time MS is debilitating, and part of the time it is not debilitating, and you lead a normal life," Neitzel said. "Most of the time, people think of people with MS in a wheelchair, but 95 percent of the people I know with MS, you wouldn't know they have MS.
"It's encouraging to know there are people out there functioning quite normally," he said.
People can't see Neitzel's fatigue or the numbness in his hands and feet.
"Right now the fatigue is the worst part," he said. "Physically not much has changed for me. I feel fortunate so far that I haven't seen any new symptoms."
Multiple sclerosis is a chronic, unpredictable disease of the central
nervous system (the brain, optic nerves and spinal cord). It is thought
to be an autoimmune disorder. This means the immune system incorrectly
attacks the person's healthy tissue.
MS can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis and blindness. These problems might be permanent, or they might come and go.
Neitzel and his family and friends will be participating in the MS Walk in La Crosse on Sunday as part of the Bleachers Butt Brigade, named for all the time the Neitzels and friends have spent on bleachers watching their kids play sports.
Last year 91 people on Neitzel's team raised $5,600 at the MS Walk, and this year more than 60 are registered so far with the goal of raising more than last year. Neitzel said he wants to be involved raising money for research so he and others can be benefit from new treatments.
"The MS Walk is also a chance for family and friends to show support and for all of us to heal," Neitzel said. "It also raises awareness."
In early 2001, Neitzel went to see his doctor after feeling tightness running from his buttocks down to his feet on both sides of the his body. His sister, a registered nurse, asked Neitzel to ask about MS. A neurologist ruled out MS.
"Usually that tightness or numbness affects one side of the body or another, so no one was thinking MS," Neitzel said.
He had physical therapy for several weeks, and the tightness and numbness didn't go away. "I still thought it might just go away," Neitzel said.
But in January 2002, he started experiencing constant numbness or tingling in both hands up to his elbows. This time tests confirmed the MS diagnosis.
"I'm not happy, but at least there was some definition, and I was finally diagnosed," Neitzel said. "I knew zero about MS, but I thought the worst like being a vegetable or in a wheelchair, but it's so different for each person.
"My wife was dismayed, hurt and frightened, that something like this would happen in the prime of our lives," he said.
Most people with MS are diagnosed between the ages of 20 and 50, and twice as many women as men have MS. Multiple sclerosis is not considered a fatal disease as the vast majority of people with it live a normal lifespan. There is no evidence that MS is directly inherited. It occurs more commonly among people with northern European ancestry.
About 400,000 Americans have MS, and every week about 200 people are diagnosed. Worldwide, MS may affect 2.5 million people.
After his diagnosis, Neitzel started a five-day course of steroids. He takes daily shots of copaxone which is believed to slow the progression of the disease. He also takes a narcolepsy drug, Provigil, which is being used by MS patients to treat fatigue but is not covered by insurance.
"The drug has helped immensely, but it's $200 a month and not covered by insurance," Neitzel said. "We're hoping it will be approved by the FDA for fatigue for MS.
"I don't have the stamina I used to, like 30 percent less," he said. "By the end of the day I'm tired, and the heat and humidity affects me more."
He still has the numbness in his hands and feet. He said he has lost dexterity, but not strength in his hands His balance is not always as good as it once was, he said.
"I'm managing the disease, and I have not developed new symptoms," Neitzel said. "The scary part is you don't know if or when you could get worse.
"Some times I get down, but my wife kicks me up out of the slump," he said. "I have to step back and say how fortunate I am to have the family I have and to enjoy them, and the opportunity to be employed."
He said his four sons — Nick, Brandon, Adam and Dylan — and his wife, Nancy, have stepped up to help around the house. "I can't always do things as quickly or do as much around the house," he said.
Neitzel said he returns to the newly diagnosed MS support group at times to let other people know they are not alone — and that a positive attitude, the power of prayer and the right medical team can make a big difference in their lives.
"You don't take things for granted, and you try to live each day to
the fullest," Neitzel said. "I try to focus on the positive, and it has
made me a little more appreciative of life."
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