More MS news articles for May 2001

Woman's Approach To MS Is Working Out

Saturday May 26 07:11 AM EDT
By MATTHEW HAY BROWN, The Hartford Courant

Tara Phillippi bulls her way through the workout: 30 seconds on the leg press, pushing enough repetitions to exceed the machine's "superior" ranking, then 30 seconds walking in place, then 30 seconds on the biceps-triceps curl for another off-the-charts performance. And on and on the 28-year-old New Britain woman works, straining, sweating, willing herself around the circle of exercise machines: once, twice, three times.

On mornings like these, when she feels healthier than she did as a fitness-crazy college student, Phillippi can almost believe she never fell ill. As she works her legs, memories of suddenly collapsing while out shopping seem distant. As she flexes her muscles, fears of a future in a wheelchair feel remote.

Phillippi knows there is no cure for her multiple sclerosis - only pauses between flare-ups that may grow increasingly common and increasingly severe. But she believes her regular aerobic exercise has helped to fend off episodes that, in the past, have left her stiff, sore and tired, sometimes unable to walk and, on one occasion, blind. So she rises every morning and makes her way to Curves for Women, the Cromwell gym she joined last year, to work her way through the routine she hopes will keep her body limber and her endurance strong for whatever MS may throw at her.

"It's a progressive disease, but I believe in mind over matter," says Phillippi, who was diagnosed in 1999. "I have the will. I have the attitude. I'm going to fight this with all I've got."

Phillippi's approach reflects new thinking on MS. Had she been diagnosed just a few years earlier, doctors might have advised her to take it easy. Believing exertion only sapped the strength of MS sufferers, physicians tended to discourage exercise.

Now, in what amounts to a sea change in the conventional wisdom, doctors are encouraging MS patients to work out within their limits to build stamina, mobility and strength. Researchers say this new approach is helping many live healthier and fuller lives.

"Our awareness and understanding of the benefits of exercise have increased greatly in the last decade," says physiatrist David Rosenblum, medical director of the MS clinic at Gaylord Hospital in Wallingford. "It can improve strength, it can improve function, and subjectively, people perceive an improvement in their overall health status."

It remains unclear why the body's immune system begins attacking myelin, the insulating white matter that allows nerves in the brain and spinal cord to fire properly. Destroyed myelin is replaced by hard sclerotic lesions, which can appear in multiple locations, thus the term multiple sclerosis.

The damage can cause tingling and numbness of the limbs, decreases in balance and coordination, slurred speech, blurred vision and general weakness and fatigue. For most patients, symptoms flare and recede, but over time, episodes may recur more frequently, last longer and have a more severe effect.

Phillippi sits squarely in the disease's main target group. MS typically is diagnosed between the ages of 20 and 40; about two-thirds of the more than 330,000 Americans who have it are women.

The Cromwell High School graduate was 24 in June 1997, just a year out of Central Connecticut State University, when she woke up one morning with a 104-degree fever that laid her low for three weeks. On the 21st day, while she was sitting on the couch in her parents' Cromwell home, she tried to move her legs, and found she couldn't.

"It's the worst feeling in the world," Phillippi says. "It's the point where you go, `Oh my God, I can't walk.'"

So began an 18-month odyssey, from doctor to doctor, from clinic to hospital, in search of a diagnosis. Phillippi endured blood work, EMGs, CT scans, MRIs, a spinal tap - and a variety of unsatisfying guesses: Epstein-Barr syndrome, Cushing's disease, sciatica, rheumatoid arthritis.

"It's like an emotional roller coaster," says her mother, Pat Phillippi, who would go to her daughter's New Britain apartment before work and rub her legs to help her get started. "Every time we got test results that were negative, you'd breathe a sigh of relief. But we still didn't know what it was."

Through the uncertainty, Phillippi's symptoms - weak legs, poor balance, stiffness and fatigue - waxed and waned. Sometimes she walked with a cane, sometimes with a walker. Or she would go out without any aids and her legs would just give out.

"When you fall, everyone rushes to you," she says. "You have to say, `You know what? This happens to me all the time.' You pull your head up, walk out to the car, and cry, one more time: `Why is this happening to me?'"

Doctors at the Yale School of Medicine diagnosed Phillippi in January 1999. At first, she says, it was a relief to know what was wrong. Then she started thinking about her future.

"Will I be in a wheelchair? Will I be able to care for my children? Will I be able to have children? Will I find a man who could love me, who will be willing to be with a woman who can't walk, who maybe can't speak?"

In the weeks before her diagnosis, Phillippi had met Steven Flick, an engineer from upstate New York. They had begun dating.

"To look at her, first meeting her, you wouldn't know she was sick," says Flick, now 28. "My first impression was that she was a very genuine person, very positive, a very reality-based person."

After her diagnosis, Phillippi read all she could find about MS. She began eating more healthful foods taking vitamins and reading about natural-path medicine. In addition to physical therapy, she tried acupuncture, reflexology and Reiki. None of it seemed to help much.

In April 2000, Phillippi's mother saw a newspaper ad for Curves. The new gym for women was offering membership discounts; Pat Phillippi suggested they both join.

Patricia Kerry-Cooper, the owner of the Cromwell gym, was skeptical.

"I was truthfully concerned with Tara's physical ability," Kerry-Cooper says. "She was like Herman Munster, she was so stiff."

"I was in a full-fledged episode," says Phillippi, who did not consult with doctors before her first workout. "I needed help with balance; I could walk maybe 25 feet. I could do the arm machines, but not the leg machines."

Before accepting the membership fee, Kerry-Cooper told Phillippi to wait a few days to see how her body would respond to the workout. When Phillippi didn't stiffen or tire, she signed up.

"I felt great," she says. "I had energy. It became my goal for the day: If I could get up and make it to Curves, that was a successful day."

After six weeks with Curves, Phillippi visited Yale's MS Clinic. Doctors told her she had improved her arm strength from 20 percent to 90 percent and her leg strength from 3 percent to 70 percent.

Only in recent years has the medical community begun to embrace exercise for people with MS. A turning point came in 1996 with the publication of a landmark study in the Annals of Neurology.

The study of MS patients by University of Utah researcher Jack Petajan found that those who engaged in regular aerobic exercise improved strength and stamina without having setbacks in their illnesses. Petajan found that exercise also helped those with fatigue or depression.

"The thing about MS is that you want to keep yourself in good shape," says Lynette Coleman, of the Greater Connecticut Chapter of the National Multiple Sclerosis Society. "It reflects society in general - we've learned so much about the benefits of exercise, and that's changing our feelings about chronic disease."

Phillippi is now a fixture at Curves. She works the chest press, the shoulder press, the biceps-triceps curl, the abdominal machine. She skips the squat machine, but she's not alone there. Plenty of Curves members without MS avoid the lower-body-strength-sapping apparatus they call "The Beast." Phillippi stands at the machine and lifts her legs behind her instead.

"I feel awesome," she says, as Madonna sings "American Pie." "My body likes being healthy."

Phillippi no longer turns blotchy red when she works out, or sweats as profusely as she did after she first joined Curves. And two lesions in her brain have shrunk. She has started a public relations and event-planning business; Curves was her first client.

Marco Rizzo, one of Phillippi's doctors at Yale, says that exercise has been important for Phillippi, but that it is just one of several factors helping her manage her condition.

"It's not exercise alone," he says. "It's immunological therapy, and being cautious about weight and diet - all of these things are helping her."

Rosenblum, the Gaylord physiatrist, extols the benefits of physical activity, but cautions that those with MS should consult a physician before beginning a program.

"It should be tailored for the individual person, just like customized medicine," Rosenblum says. "We don't suggest people just do their own thing, any more than we suggest they prescribe their own pills."

Phillippi's business, Class Act Consulting, is growing. She recently planned a fund-raising breakfast for the Coordinating Council for Children in Crisis, and she's looking to add more clients. She is also planning a wedding - her own. Flick proposed last fall.

"For a long time, there was a little voice in the back of my head saying, `What if we had kids? Could she be alone with the kids?'" he says. "But all of the good that comes with being with her just outweighs the challenges. It became a no-brainer."

Now Phillippi wants to raise a family, hoping to start with twins.

"My life to me is a new beginning," she says. "I'm going to be a wife. I'm going to be a mother. I'm going to stay the healthiest that I possibly can."