Wednesday, April 03, 2002
By MARY JO LAYTON
A flier posted in a Lodi Laundromat caught Michele Novelli's eye: walk for multiple sclerosis, help find a cure. Elbow deep in a pile of wet clothes, she had found her cause.
A few weeks later, Novelli made the nine-mile trek through Ridgewood on a warm April day and collected a few hundred dollars in pledges in what would become an annual ritual.
That was nine years ago, when Novelli, newly married and saving for her first house, couldn't even pronounce "sclerosis.'' Six years later, shortly after her yearly walk, she was forced to become an expert.
Strange symptoms began to appear: Her right arm and leg would tingle, her speech would slur. Sometimes at her job at an insurance company, the 35-year-old's right hand would go limp and she could no longer clutch a pen. It happened up to 30 times a day, she said.
"My doctor thought I might have had a stroke,'' Novelli said. "I actually brought up MS. It was the only nerve-muscle disease I knew about, and that was because of the MS Walks."
Michele remembers every detail of that day in 1999: the nurse who confirmed her fears when she said a second scheduled test wasn't necessary, how she had to clutch the steering wheel to get herself home, the way she apologized to the doctor for crying when he broke the news over the phone - she laughs when she recalls it now - and having to tell her mother she had MS on her mom's birthday.
Even then, though, Michele remembers a sense of resilience as she faced life with this chronic, often disabling disease of the central nervous system. After what seemed like hours of hugs and tears with her husband, Dominic, she vowed, "I'm not going to let it beat me.''
For such an unscripted start as an activist, the Saddle Brook woman is perfectly cast as the ultimate optimist, unhampered by disease: She spends hours chasing her 18-month-old daughter, Rhiannon, house-hunts with her husband in northern Bergen County, and drives to Long Island frequently for countless birthday parties and holidays with her extended clan. Oh, and did she mention she is trying to have another baby?
"We're going for it,'' Michele confides with a smile, grabbing Rhiannon onto the couch and soothing the family mutt who is barking at a stranger outside.
With the blessing of her physician, Michele has stopped injecting herself daily with Copaxone. It is one of a handful of drugs that helps lessen the frequency and severity of attacks, reduces the accumulation of lesions in the brain, and slows the progression of disability.
Typically, pregnancy is a good time for women living with MS, because the disease goes into remission, Novelli said. "Dom and I have talked about having a baseball team,'' she said laughing.
Novelli has the most common form of the disease, which is known as relapsing-remitting MS. People with this type of MS experience flare-ups or episodes of acute worsening of neurologic function. These are followed by partial or complete remissions. There is no cure, but there are treatments.
Medication has eased many of Novelli's symptoms. She was, however, hospitalized seven months after her daughter's birth, when one of her eyes became strained and painful. Her vision became gray and fuzzy like a picture tube fading on an old television. A week on intravenous steroids and other treatments restored her vision to normal.
Lately, she spends hours getting pledges for the MS Walk on April 21, in which Novelli and her team of 100 will try to top the nearly $14,000 they earned last year for the Greater North Jersey Chapter.
They netted so much money that Michele was named honorary chairwoman of this year's walk, which takes place in seven North Jersey counties.
"When people picture somebody with MS, they picture someone in a wheelchair or a person who can't take care of themselves,'' said Doug Rouse, director of the MS Walk for the Greater North Jersey Chapter of the National MS Society. "Michele is a shining example of someone who has MS and doesn't let this disease control her life.'' Overall, an estimated 300,000 Americans have MS, and twice as many women as men develop the disease. In North Jersey, 4,500 people are living with MS, Rouse said.
Symptoms are unpredictable and vary greatly from person to person. For example, one person may have abnormal fatigue, and another might have severe vision problems. One person with MS could have loss of balance and muscle coordination, another could have tremors and bladder problems.
The majority of those with the disease do not become severely disabled. Two-thirds of people who have MS remain able to walk, though they may need the aid of a cane or crutch.
"The thing about MS is that it is so unpredictable,'' Novelli said. "The disease is different in every person. There's no timetable on how it will progress.''
Novelli shares those observations with students and many people who are newly diagnosed. Recently, she spoke with Tenafly students to show how people can live with MS. Next week, it's onto Montclair schools. Many calls come from terrified women, newly diagnosed with MS, who need advice.
"The big thing for many of them is they assume they cannot have a family,'' Novelli said. "They're so relieved when I tell them about our family.'' The Novellis are collecting about $250 a day in pledges and are shooting for $20,000 this year from their team known as the RAMS (Rage Against MS) The ram is also the mascot for Fordham University, where Michele met Dominic, a chief of staff for Bergen County Executive William "Pat'' Schuber.
Michele is praying that the weather will be favorable. In previous years, it has rained and snowed.
"We had 45 people in this house. They were packed in every nook and cranny,'' she said, her eyes scanning the living room of the tidy Cape Cod loaded with toys. "It worked.''
For more information or to register for the April 21 walk, call (201)
261-WALK or see the Web site: http://www.mswalk.org
Copyright © 2002 North Jersey Media Group Inc.