For A Born Multitasker, MS Presents A Most Challenging Mission

By Kaaren Valenta

Ever since she was diagnosed with multiple sclerosis last January, Lisa Cedergren has been a woman with a mission.

Despite the death of her father five weeks after her diagnosis, and her back surgery barely five weeks ago, the mother of three plans to walk 50 miles in three days in the Chesapeake Bay Challenge Walk to raise money for the battle against the devastating central nervous system disorder.

“I’m walking now because I can. I don’t know what the future will bring,” Ms Cedergren, 43, said. “But I don’t want pity. I don’t want people to tell me how sorry they are that I have MS. I want people to help support the effort to raise money for research. Through research and the discovery of phenomenal medications, great strides are being made in controlling the progression of the disease and we are coming closer to finding a cure.”

Every hour of every day a person is diagnosed with MS, she said. MS is a chronic, disabling central nervous system with varied symptoms, an unpredictable course, and likely progression of disability.

One person may have loss of balance and muscle coordination, or dizziness and vertigo, making walking difficult; another may have abnormal fatigue or severe vision problems. Slurred speech, tremors, stiffness, bladder problems, numbness, tingling, and depression also are symptoms, as are cognitive changes, such as problems with memory, attention, and problem solving.

“For me it is mostly cognitive,” Ms Cedergren said. “I’m a fairly intelligent person; I was the queen of multitasking. But when I get an exacerbation [flare-up], my brain turns to mush. I’m like a 5-year-old.”

A respiratory specialist at Danbury Hospital, where she works in the Sleep Disorders Clinic, Ms Cedergren is a certified respiratory therapist, a registered sleep technologist, and an EEG technologist, with a bachelor’s degree in primary education and child life.

“I started out in child life working with hospitalized children, but I’ve always been interested in the medical field. I was an EMT at the age of 16.”

Ms Cedergren grew up in Monroe, married — on her father’s birthday — Robert Cedergren, a captain in the Bethel police department, moved to Sandy Hook, and had three children: Britta, now 17, who is starting college this fall; Hunter, 15, a sophomore at Newtown High School, and Gunnar, 12, who is in seventh grade.

“I’ve worked [part-time] for Danbury Hospital for 17 years because I wanted to stay home for my children,” Ms Cedergren said. “But they have reached the point where they don’t need me as much, and I was hoping to begin work on a master’s degree in public health at Columbia University this fall. That has been put on hold now for a year.”

Her problems started last October when she had a virus that caused dizziness, balance, and gait problems.

“It went away, then in December I got bronchitis,” she said. “That’s another virus. I had memory issues, balance problems, confusion, and visual problems in my left eye.”

When the bronchitis was cured but the other symptoms remained, Lisa Cedergren went to a neurologist for an MRI. He found lesions on the brain and ordered a spinal tap that showed one of the markers for MS.

“He sent me to Dr Fred Lublin, one of the most recognized authorities on MS, at Mt Sinai Hospital, who confirmed that I did have MS, but I was fortunate to have caught it in the early stages. Fifteen years ago they didn’t have the drugs available that they do now. I inject myself daily with copaxone, which helps prevent the MS from getting worse.”

“With MS, you are not cured. There is no cure; it is always there. It remains dormant,” she said. “There are 400,000 people with MS. There are four different kinds, but all attack the myelin that helps nerve fibers conduct electrical impulses in the body.”

The most common type, which occurs in about 85 percent of the cases, causes clearly defined flare-ups followed by partial or complete remissions that are free of disease progression. But about half of the people with that clinical history eventually stopped having remissions and begin a steadily worsening course of the disease.

Researchers believe that MS is an autoimmune disease that might be triggered by a combination of factors including genetics, gender, and environmental triggers such as viruses, trauma, and heavy metals.

Who gets MS? “Anyone can,” Ms Cedergren said. “But it strikes mostly women in their 30s and 40s. I look healthy. With me it is not a physical issue — people can’t see the MS.”

She sings with the Connecticut Master Chorale and for the past three years has been involved with the Newtown Congregational Church’s WorkCamp, chaperoning youth who are helping to rebuild homes for those in need. This year she went on the trip despite a herniated disk in her back, helped to rebuild two porches, and came home, caught a cold, then went to the hospital for surgery.

After the surgery there was a flare-up in the MS, however, landing her in the acute rehabilitation unit for a week. She now is an outpatient at the Danbury Hospital Main Street Rehabilitation Center, where she receives physical, occupational, and cognitive therapy.

“The doctors thought the surgery had caused the exacerbation but Dr Lubin said it was caused by the virus,” she said. “My MS seems to be exacerbated by viruses because it is an autoimmune disorder.”

The first to admit that she hates anyone to feel sorry for her, Ms Cedergren said she uses humor at home and at work to cope with the disease.

“Humor really helps,” she said. “I have eyeglasses with prism lenses to help my eyes track together. But when my eye starts to get spastic, we laugh about it.

“At the rehabilitation center they are teaching me skills in how to organize myself. It’s like a recipe box. If I have to go to the bank, it provides me with step-by-step instructions on what I need to do. Multitasking is out.”

In addition to the three-day 50-mile MS Challenge Walk on September 9–11, she also plans to participate in the Bike on the Sound for MS on September 24, the latter with her elder son.

Connecticut does not have a Challenge Walk so she opted to walk in Maryland, where her family has vacationed in the Chesapeake Bay area for ten years.

“Nothing is going to stop me,” Ms Cedergren said. “I am doing the walk by myself, not with family or friends, because it is my way of coping with my diagnosis and my father’s death. There are 467 people walking from Annapolis to Baltimore. I am number three on the list of money raised.”

To participate, walkers have to pay a $50 registration fee and raise at least $1,500 in donations. So far Lisa Cedergren has raised $6,400, mostly through letters she has sent to friends and family.

“The support is unbelievable,” she said. “It has touched my heart that so many people care.”

“This is not all about me,” she said. “But I want to do everything I can to fight it and find a cure. The only way to raise money to fight MS is to get out there and talk about it. A great deal of money has been raised for cancer and breast cancer by doing that. Now it is time to do the same thing for MS.”

Donations can be made online; Lisa Cedergren has a website page at www.baychallengewalk.org. Or donations should be mailed by September 1 to the National MS Society Maryland Chapter, 10946 Beaver Dam Road, Suite E, Hunt Valley, MD 21030.