Multiple sclerosis sufferers life with a disease that taxes their independence
Tuesday, January 27, 2004
The Daily Herald
As far back as 1978 Barbe Jacobson of Marysville noticed that her legs and feet felt strange. It was that weird tingly feeling, like they were asleep.
Jacobson headed to a doctor, endured a spinal tap and saw a neurologist.
"I was told I was crazy," Jacobson said. "They said it was all in my head."
During the 1980s Jacobson began suffering from tremors. Her hands would shake as she used her computer at work.
But it wasn't until 1990 that Jacobson, was diagnosed with multiple sclerosis. Now, at 54, almost 26 years after her first symptoms, Jacobson no longer works and has difficulty getting around.
MS is a disease that affects the central nervous system. It occurs when myelin, a fatty tissue responsible for protecting nerve fibers in the central nervous system, is destroyed.
Myelin not only protects the fibers, but it helps them to conduct electrical impulses to the brain. When it is destroyed it leaves plaques, lesions and scar tissue, called sclerosis, and disrupts the ability of the nerves to conduct impulses to and from the brain.
Multiple sclerosis symptoms can range from mild to devastating. Some people may experience dragging feet or numbness in the face. Others may eventually need a wheelchair.
The cause of MS is unknown and there is no cure. People between the age of 20 to 50 get the disease. It affects about 400,000 Americans and, according to the National Multiple Sclerosis Society, those of us living in the Northwest are more likely to be affected than people in other parts of the country.
Women are twice as likely to get it as men are. Snohomish resident Lisa Lee, 38, is one of those women.
Lee remembers taking a walk during her lunch break and falling. "Tripping on air I call it," Lee said.
She began to wonder if she had MS. Her symptoms resembled those of her great-aunt who had the disease. Lee's suspicions were confirmed after a visit to the doctor.
Lee keeps a positive attitude despite her illness. It helps her tackle the difficulties of everyday life with MS. Both she and Jacobson attribute their outlook, in part, to a support group they both joined in 1995.
"MS isn't always going to be you in a wheelchair," Lee said. "It doesn't mean it will happen to you."
Lee and Jacobson are co-leaders of a monthly MS support group that meets in Marysville. Support group members welcome new people whether they have MS, or are caregivers or family members. "We're like friends helping friends," Lee said.
People attending the group get a chance to share information with others in the same position as they are, and with varying degrees of the disease.
They discuss things like where to buy air mattresses and what local swimming pools might offer classes for MS patients. They find comfort in knowing they are not alone. They indulge in treats, and they laugh.
"Laughter is the best medicine," Lee said. "I say when I fall, 'Where did I go this time?'"
The everyday problems of living with MS are something that Lee and Jacobson know all too well. Jacobson wishes she could do all the things she used to, such as just hop into the shower or tub, mop the floor or sweep. When she worked she used to be up at 6 a.m., get her child ready for day care and be at work by 6:30. Everything takes so long now.
Jacobson is frustrated when she goes to the store and realizes that as people zip in, get their groceries and hurry back out to the their cars again, she's still in her car.
But not far behind those feelings of frustration comes her look at life from another angle: "At least I woke up," Jacobson said.
She enjoys the camaraderie the support group offers. It's a comfort, she said, to know that she can ask, "Has anyone had this happen?" and "What did you do?"
Members talk about medications, Web sites and doctors, and sometimes speakers are invited to talk to the group.
Curt Campbell, a physical therapist with Cascade Rehabilitation in Everett was recently asked to talk about what to do when patients cannot exercise.
"MS is such a variable disease, not just person to person but day to day within the same person, that it's very difficult to make a general statement about exercise," Campbell said.
He answered questions from members of the group, each one in different stages of the disease. They learned from him, and he learned from them.
"That's not surprising with MS," Campbell said.
Patients are very educated about the disease and because MS is difficult to diagnose there is much that the medical community doesn't know, he said.
Lee takes her knowledge about MS and goes out into the community, talking to first-graders as part of a diversity program in the schools. She also likes to stay active and would like to hike Mount Pilchuck again someday.
"If I could go and hike up there again it would be great," she said.
Lee bought a 10-speed bike around the time she was diagnosed. She never got to ride it. The bike store refunded her money. Now she has a trike. She intends on riding it in the MS walk, on April 17 this year, in Snohomish.
"I'm grateful for what I can do today," Lee said. "Tomorrow I could
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