More MS news articles for February 2001

Multiple Sclerosis

Tri-State sufferers form own group

http://www.courierpress.com/cgi-bin/view.cgi?200101/31+ms013101_news.html+20010131

Evansville Courier & Press Wednesday, January 31, 2001
By ELLA JOHNSON, Courier & Press staff writer
(812) 464-7420 or ejohnson@evansville.net

At first glance, Suzy Sims looks like the picture of good health. But her slow, stiff body movements, aided by a cane, hint at a serious health problem.

"I used to walk two or three miles a day. Then I began to notice it was more difficult to make my left leg work properly," said the 57-year-old Evansville woman.

"I woke up one day and all of a sudden my face was numb on the left side, and I was exhausted. I was so fatigued it was hard to lift my arms."

Sims is among an estimated 5,300 Hoosiers living with multiple sclerosis. The disease has had a devastating effect on her central nervous system, changing her life forever.

Sims is now involved in another challenge: She’s one of several local people who have helped form a new, nonprofit organization called the Tri-State Multiple Sclerosis Association Inc. The group broke away from the National Multiple Sclerosis Society and will compete for fund-raising dollars with the national organization’s Indiana chapter.

A letter from the Tri-State Multiple Sclerosis Association has been mailed to local MS clients and corporate benefactors, seeking financial support for a MS clinic in Evansville.

"I want people around here to understand that we had good reason for doing what we did, for making the decision to breakaway," said Sims, who had served on the statewide MS programs committee and is now the volunteer president of the new association.

"Obviously we’ve been thinking about this for several years. There have been so many employee changes (at the state chapter) we just got to where we knew someone and that person resigned and we had to start over," she said.

Sims said the state chapter has had four chief executive officers and five chapter directors within 10 years. As a result, she said, the organization became unorganized and impersonal.

Before she was diagnosed with MS, Sims said doctors struggled to find a cause for her symptoms — fatigue, numbness, a loss of balance and difficulty speaking.

A neurologist at Indiana University Medical Center suggested her problems were brought on by stress or depression and referred her to a psychologist. But, after only a few therapy sessions, Sims said the psychologist realized her problems were not psychological. Sims was encouraged to seek a second opinion from another neurologist.

"There were two years prior to my diagnosis when we knew something was wrong but nobody could figure out what it was," Sims said. "That was probably the two most difficult years of my life."

Doug French, the former president of St. Mary’s Medical Center, discussed with her the possibility of establishing a local MS support group. The group eventually affiliated with the National Multiple Sclerosis Society Indiana Chapter. That relationship continued until the fall, when the local group split off and formed the new, nonprofit organization.

Sims said the resignation of Debbie Hebbler, a nine-year member of the local support group who had worked closely with the state chapter, was the deciding factor. She said under Hebbler’s direction, the Evansville group became the strongest affiliate in the state. It raised thousands of dollars from corporate sponsors.

Hebbler declined to comment on her resignation and referred all questions to Sims.

Theresa Brun, president of the National MS Society Indiana Chapter, said the situation is a personnel matter and cannot be discussed publically. However, she said, the recent changes will not affect the MS society’s presence in Southern Indiana.

"The Indiana state chapter is still and continues to be very committed to providing services to our clients and their family members," Brun said. "We are supportive of any group that wants to help us in our mission."

Brun said a staff member from the society will continue to coordinate existing programs and work with volunteers. She said the state chapter hopes to open an office in Evansville.

"The money generated by our association will stay here and not be sent to Indianapolis as it has in the past, giving us more opportunity to assist those in need within our own area," the letter said.

Attorney Alan Shovers, chairman of the Tri-State association board of directors, said many MS patients are frustrated by the lack of knowledge about the disease. He said a local MS clinic dedicated to diagnosing and treating MS clients would fill the void.

"You have a big population who has this problem and they need special things that go beyond just physicians," said Shovers, whose 33-year-old son has MS. "It’s important not only for Evansville but out in the hinterland that people have a place where they can go to be diagnosed. Our problem right now is to get the seed money to get it organized."

ON THE WEB

The Tri-State Multiple Sclerosis Association is conducting a survey to gauge public support for a MS clinic. A shortened version of the survey is available on our Web site courierpress.com/MS

FOR MORE INFORMATION

To be added to the Tri-State Multiple Sclerosis Association mailing list, write to: Tri-State Multiple Sclerosis Association Inc., P.O. Box 3034, Evansville, Ind. 47730-3034 or contact Connie Romain at 867-6000. All responses will remain confidential.