All About Multiple Sclerosis

More MS news articles for May 2004

MS society connects patients with support

Sunday, May 02, 2004
Jane Pic
The Times-Picayune

Multiple sclerosis is a chronic and often disabling disease of the central nervous system. Most diagnoses are made when people are between the ages of 15 and 55.

Symptoms range from mild to severe, and include numbness in the limbs, loss of vision, unusual fatigue, loss of balance and partial or complete paralysis causing emotional and physical effects that can be lifelong. They can come and go unpredictably.

Cynthia Lee's first symptom appeared in 1980 when she experienced blindness in one eye. The blindness was attributed to an infection, and her vision returned after treatment. The next symptom occurred after the birth of her son in 1981, when Lee could not get out of bed and walk. It felt as though her legs just would not work. This condition was diagnosed as a pinched nerve, and she eventually regained her mobility.

She and her husband, Bivian, who played for the New Orleans Saints from 1971 to 1976 as a cornerback, had been living in Denver after he retired from football, and the early symptoms started there. They moved back to the New Orleans area in 1983.

After the death of her husband in 1984, Lee had minor symptoms, but one morning she woke up and her body was immobile. After an MRI and other tests, the MS was diagnosed.

"I had attributed everything to the stress that I was under after Bivian's death and was completely devastated when this diagnosis was made. My children were young and I never thought something like this would happen to me. It always happens to other people," Lee said. She worked for Lockheed Martin, having transferred from Denver, and she managed to control her symptoms.

But in 2001 she experienced a flare-up that changed her life. She woke up completely paralyzed and spent the next two months in the hospital for treatment and rehabilitation.

Stress can be a big factor in MS, and Lee was advised to "simplify" her life. She tried her best to continue working by cutting down on her hours from full time to part time, but it was still too much. Her children were grown and independent, so she quit her job, sold her large home and bought a condo in Metairie.

Her first contact with the Louisiana Chapter of the National Multiple Sclerosis Society was when she decided to participate in the 2002 MS Walk yearly fund-raiser. She met Crystal Smith, the agency's programs director, and realized that she was not alone. Smith, who also has MS, encouraged Lee to participate in the support groups provided by the chapter and to volunteer at the office.

"I was truly in denial for so many years, it was hard for me to relate to others with MS. But once I decided to come to grips with this disease, I found out I wasn't alone," Lee said.

Today, Lee volunteers as the information and referral assistant at the Louisiana chapter and provides peer support to others.

Exercise is a very important therapy for people with MS. Last year, Lee walked in the Crescent City Classic and finished the six-mile course and realized she is happier the more involved she becomes.

The 2004 MS Walk, held recently at the LaSalle Tract in Metairie, brought together 200 people with and without MS to support the local chapter. One of the highlights was the appearance of Eve Steiner of Salt Lake City. Steiner, 25, was diagnosed with MS 10 years ago and is making a cross-country bicycle tour to promote awareness of the disease.

Steiner began her trip March 20 in San Diego and has cycled to Phoenix, Albuquerque, N.M.; Amarillo, Texas; Tulsa, Okla.; Little Rock, Ark.; and New Orleans. From New Orleans she cycles to Jacksonville, Fla., for a total of 3,900 miles. Some days she can travel only 40 miles; other days she has traveled 100 miles, averaging 60 to 70 miles per day.

"I want everyone to realize that a diagnosis of MS is not stopping me and it shouldn't stop you," said Steiner, who led walkers in a warm-up exercises. "By taking a proactive approach to this disease, you can help yourself the most. Exercise is essential."

Most of the time, she cycles alone without a backup vehicle and stops at camping areas between cities if necessary. She is part of a team of athletes sponsored by a pharmaceutical company that tours the country raising awareness about the disease. The team includes a professional race car driver, pool player, marathon runner, technical mountain climber and triathlete.

Beth Vanderwalker, the reigning Mrs. Louisiana, was also present at the 2004 MS Walk. Vanderwalker has chosen MS as her platform for her reign because her mother in Baton Rouge has MS.

For more information about MS or the local programs offered, call Smith or Lee at (504) 832-4013.

Copyright © 2004, The Times-Picayune