Dealing with effects can be frustrating but not hopeless
10:56 a.m. Monday, March 24, 2003
By Wevonnedda Minis
Of The Post and Courier Staff
Elizabeth Peterson loved to play the piano and would love to play it again. Unfortunately, her Wurlitzer upright is actually more like a piece of furniture than a musical instrument these days. It sits in the living room against the staircase that she no longer can climb and is heard only on those rare occasions when Peterson tries to coax the fingers of her right hand to cooperate once again.
Sometime over the past several years, Peterson's fingers became inflexible and started to curl inward, forcing her to wear a brace that prevents them from digging into her palm as she sleeps.
Her husband, Dick, has bought her a psaltery, a narrow, string instrument that does not require too much digital dexterity. It's yet another thoughtful thing he's done to help her adjust to her disease.
Peterson has multiple sclerosis, the chronic, potentially debilitating disease of the brain and spinal cord. She feels blessed to have been a wife and mother long before the disease's challenging symptoms appeared. Still, having MS is no picnic.
"It's constantly reinventing yourself," says Peterson, who has found alternatives to more habits and activities than she can recall. She no longer takes leisurely walks along sunny beaches to pick up shells because warm weather exacerbates the discomforts that people with MS feel. She also can never fulfill her dream of taking her grandchildren on numerous trips to zoos and museums because she can't move quickly or steadily enough.
In the body of a person without MS, the nerves of the central nervous system are insulated by a fatty substance called myelin. That insulation is what helps to transmit messages between the brain and other parts of the body. Those messages control muscle movements such as walking and talking.
Without the myelin, messages from the brain are delayed or blocked. That communication breakdown is what causes MS symptoms, including slow and uncoordinated body movements and the inability to move at all, as well as double vision and blindness.
The situation can be very frustrating, but it needn't be hopeless.
"The vast majority of people with MS are coping," says Dr. William Tyor, a neurologist and director of the MUSC multiple sclerosis clinic and Peterson's doctor. It's hard to predict how difficult or manageable an individual case of MS will be. About 5 percent to 10 percent of people diag-nosed have benign MS and never have a major problem.
Prominent people living with multiple sclerosis include television host Montel Williams, race car driver Kelly Sutton, country singer Clay Walker, actress Teri Garr, comedian Richard Pryor and singer and dancer Lola Falana.
Some researchers studying MS think the disease results from a virus in the immune cells; others say it starts in the cells that produce myelin. While medical professionals can describe the things that can happen to a person with multiple sclerosis, the disease still is difficult to diagnose because many of its symptoms are similar to ones caused by other diseases.
Peterson, who was an English and Latin teacher at Summerville High School, was baffled in the mid-1980s when her hands and feet would tingle. It was a feeling she would experience occasionally over the years.
But, it got progressively worse.
"My legs would feel like they were weighted down," says Peterson, who began several years of doctors visits seeking a diagnosis in 1987. "After many tests they said, 'We think you're just stressed out.' They told me to go off of coffee. They thought it was all in my mind. I didn't go back."
Over the next several years, there were times when she would fall or her legs just did not do what her brain told them to do. She always had an excuse. Then one day, her legs wouldn't do anything at all. Her husband had to pick her up from school and take her home because she couldn't walk.
The unexplained condition became more frustrating whenever she took her Latin students to national competitions. She could barely get around the large university campuses where they competed. She had the added pressure of fearing she would disappoint a student by missing a competition.
In 1994, while walking for fitness, her right leg started to drag and then flop. She'd rest and the leg would get better. But later, it would drag and flop after a lot less walking.
"It never occurred to me to see a neurologist until the math teacher at school was diagnosed with MS," Peterson says. One day while signing in at school, she looked over at the math teacher and thought the teacher's leg looked similar to hers. Peterson spoke with the other teacher who suggested she see a neurologist.
In December 1994 she saw a neurologist for the first time. The doctor ordered Magnetic Resonance Imaging to see a detailed image of her brain. The image showed no lesions or patches of inflammation stripped of myelin. He suggested she return in July 1995 for an MRI that focused on her spinal cord. She did and after the doctor received the image, he ordered a spinal tap.
A couple of days later he telephoned to say, "You have MS."
"I was very shocked and I didn't know anything about MS. He told me it was not anything I would die from, and that 80 percent of the people don't go to a wheelchair. I really had a lot to learn about MS. I really didn't understand how it affected the body."
The occasional tingling and numbing Peterson experienced before her diagnosis, she would learn, is a stage of the disease called relapse and remission. She now has a course of MS called secondary-progressive. Her disabilities are progressive, and she doesn't have remissions.
The last Latin competition she attended with her students was at the University of Kansas days after her diagnosis.
"It was so difficult to walk from the college dormitory to the buildings where my students were competing," Peterson says. "Ironically, the state motto of Kansas is 'Ad Astra Per Aspera' -- 'To the stars through difficulty.' " She noticed the motto while at that last competition, and says it was about to become a metaphor for her life.
Currently there is no cure for multiple sclerosis, but progress is being made, Tyor says.
Twenty years ago, there was nothing available to halt the progression of the disease, says the doctor. When a patient temporarily experienced symptoms such as a blind eye or numb leg, a doctor could only provide steroids to get him back on his feet faster.
During the 1980s, studies were conducted on drugs such as interferon beta and copaxone. Interferon beta helps the body fight viral infections and regulates the immune system. Copaxone blocks damage to myelin by acting as a myelin decoy.
Both interferon beta and copaxone slow the progress of the disease by reducing the number of relapses and brain lesions, Tyor says. That means a patient who would need to use a cane or wheelchair in a few years without the drugs might not need to use one for a decade with them.
Today, the focus is on finding out which combinations of drugs will help slow the disease's progression even further. Animal studies have shown that such combinations can reconnect severed nerves and restore the myelin.
"In 10 to 15 years we'll be improving nervous systems that have been damaged," Tyor says.
Meanwhile, those with the disease continue to face its challenges.
"What's so hard is that uncertainty," Peterson says. "When is my leg going to go out again?"
Still, she is grateful that her losses have been gradual.
In 1996, the year after Peterson's diagnosis, she started weekly interferon injections, physical therapy and relying on a cane to get around. Even with the cane, the distance that she was able to walk grew shorter. However, she did walk down the isle of The Citadel's Summerall Chapel without the cane, but with her husband's help, at her daughter Kerry's wedding that year. She felt similarly blessed when her son, Rick, was married there the following year.
"I felt so blessed not to have had to go down the aisle looking handicapped," Peterson says.
In 1997, the South Carolina Vocational Rehabilitation Department had a left foot accelerator installed in her car. They also built a raised platform in her classroom that helped her to maintain her position as an authority figure. The next year the agency had an automatic lift installed in her new van, so she could transport the scooter she had begun using.
Peterson tried hard to continue teaching.
"This was my identity," she says. "This was what I'd always done."
However, getting from her van to her classroom and back again after a day's work proved very tiring and grew increasingly difficult. So, in May 1999, she left school before exams and hasn't taught since then.
Last year, she started the Summerville support group for multiple sclerosis. The group meets on the second Tuesday of each month with invited speakers who impart information members can use to improve their lives.
After having experienced and studied the disease for quite a while now, Peterson says she is happy to be able to help others, especially young adults who are newly diagnosed with the disease and unsure of what their future holds.
In the past year, Peterson has learned to type with her left hand. She also picks her grandson up from kindergarten most days. And with encouragement from all three grandchildren, she has rediscovered the joy of reading to little ones.
The National Multiple Sclerosis Society says that anyone might develop MS, but there are patterns:
There are four kinds of MS, according to the National Multiple Sclerosis Society. Each of them can be mild, moderate or severe:
Following are times and locations for local multiple sclerosis support group meetings:
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