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More MS news articles for May 2003

MS crusader beats back illness, demands answers

http://www.boston.com/dailyglobe2/110/north/MS_crusader_beats_back_illness_demands_answers+.shtml

April 20th, 2003
By Alan Lupo, Globe Columnist
Boston Globe

Let's begin with a disclaimer. When it came to science courses in school, I knew the difference between a beaker and a sneaker, and that was about it. So, I don't know much about such a phenomenon as medical research, but I do know courage when I look it in the eye and hear its voice.

Courage is Robin Dolan, a 43-year-old wife and mother of two, who, sitting in the dining room of her family's two-story Melrose home and, cupping her chin in her left hand, stares at piles of medical journal excerpts and says, ''I've been poring over this stuff for seven years. Seven years,'' she repeats, as if to herself. Classical music plays softly from a radio in the kitchen. The house is sparkling clean, the backyard neatly

landscaped. The home and its neighborhood seem to be comfortable places. To the eye and ear of a visitor, Dolan also appears healthy, intelligent, attractive, and possessed of a strong handshake.

Yet, she is ill, diagnosed

11 years ago with multiple sclerosis, a degenerative neurological condition that can lead to any number of symptoms and for which there is no proven cure. ''I was in the habit of walking a couple of miles a day,'' she recalls, ''and one day, I felt numbness in both feet. It progressed up to my knees.''

A doctor told her to take it easy for a while. She returned to college, where she was pursuing a bachelor's degree. ''I lost my ability to hold a pen, it was during finals, and by the end of the week, I had difficulty talking.''

The diagnosis was MS, and she began reading books about it and got scared at the possibility that it would put her permanently in a wheelchair and make her dependent on others. ''It behaves differently in everybody,'' she says. ''I had seizures. My legs felt like cement. A 2-inch step was an effort.''

The disease indeed progressed from 1992 to 1998, she says. Now, she's easily up from her dining room chair. Twice, during an interview, she climbs stairs to the second floor and back. The scooter she once used is in the garage, she says, and the wheelchair is in the rafters.

Just over five years ago, she began a new drug therapy, which was supposed to slow the progression of the disease and which she contends has worked better than the doctors predicted. ''I'm not supposed to be able to get better, but I know I am,'' she says.

It's not just the drugs, she insists, it's also a change in diet in which she tries to avoid processed foods laced with those chemically manufactured substances that assure a product's shelf life but, she concludes, may not be so great for her life.

And how do neurologists and other medical specialists react to her insistence that nutrition is a key? She says the reactions range from denial to indifference. Progress has been made in treatments, but the international medical community differs over causes and even treatment.

Three years ago, Dolan decided to pursue a master's degree in nutrition at the University of Bridgeport in Connecticut. She took four courses online, and her husband, Tom, drove her three hours down and three hours back to take four more courses. Now she's trying not only to finish her degree but also to prove a point - that environment may have a lot to do with getting MS.

Dolan grew up in East Boston's Jeffries Point, then a tightly knit, largely Italian neighborhood close by Logan Airport. She has discovered that other East Boston natives also got MS, and she's been contacted by a couple of MS residents of Winthrop, another Logan neighbor.

She has questions for such people. So far, she has nine former Eastie residents and two from Winthrop. She needs to interview 20 such persons to satisfy her bio-statistical teacher. ''I know they exist,'' she says, ''and I know there's something more to MS than what science knows now. And I wonder, if there's an environmental risk factor, do you leave it behind, or does it change the genetic chemistry so much that it can affect your children?''

A medically supervised study some years ago showed that there was no exceptional number of MS cases in East Boston.

But for years, Dolan has labored through dense medical journal excerpts, read books, attended lectures, and studied. She has underlined and starred paragraphs and made notes in the margins. She has deteriorated and has fought her way back to a more normal life. Early in her illness, she says, a doctor told her, ''Once you're in a wheelchair, you're never coming out of it.'' She never went back to that doctor. She has proven to herself that she feels better now than she did a few years ago.

Now she wants to try to prove another point - can living in the shadow of an airport and its byproducts of airplane noise and exhaust, dump materials from harbor fill, and related auto traffic lead to MS? Former and current Winthrop and Eastie residents with MS can call her at 781-662-8927.

''I just want to make a difference,'' Robin Dolan says.
 

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