Tuesday, July 03, 2001
By Matthew Hay Brown-The Hartford Courant
NEW BRITAIN, Conn. - 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 more frequent and severe. But she believes her regular 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 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 S. Rosenblum, M.D., 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." (Physiatry is the specialty of physical medicine and rehabilitation that deals with the diagnosis, treatment and prevention of disability caused by acute or chronic disease.)
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.
Phillippi 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 finally 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. "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 alternative 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 spotted an ad for Curves gym in a newspaper. The new gym for women was offering discounts on memberships; 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."
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.
Phillippi is now a regular at Curves.