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Edgardo Martinez | Sentinel Staff Writer

Posted October 7, 2005
DELTONA -- Everything was just about ready, and Nayda Cuevas was restless, moving from here to there and making sure nothing was overlooked.

Hot pizzas and cold sodas were ready for everyone to enjoy at the refreshment tables, while conversations in English and Spanish were heard throughout the room.


Everybody at this meeting has multiple sclerosis, a chronic, unpredictable disease of the central nervous system that can cause blurred vision, loss of balance, lack of coordination, numbness, extreme fatigue, paralysis and blindness.

"This is my mission," said Cuevas – an MS patient herself -- explaining why she founded the support group she christened the MS-sketeers.

The group has been meeting every month at Our Lady of the Lakes Roman Catholic Church in Deltona since March 2004, only a year after Cuevas was diagnosed with MS. Friendships have flourished, people have learned more about the condition and how to live with it, and hopes have been strengthened by updates on research to find a cure for this debilitating condition.

According to the Multiple Sclerosis Foundation, based in Fort Lauderdale, 350,000 to 500,000 people in the United States have been diagnosed with MS. Ninety percent of MS patients are between the ages of 16 and 60 at the time they are diagnosed, but MS can make its first appearance in early childhood or after age 60.

For Cuevas, the fact that she knew people with MS, along with her religious faith and the support of her husband and daughters, all helped keep her from becoming overwhelmed with the new reality she faces for the rest of her life.

After beginning medical treatment, she visited out-of-area support groups for a year because she couldn't find local meetings.

"I felt I had a lot of information that other people might benefit from," Cuevas said.

Experience has shown that support groups often play a key role in helping people refocus their lives once they've been diagnosed with a serious disease.

Edelmira Pacheco, a cancer survivor who coordinates a support group in Orlando, says such meetings are much more than listening to a speaker or learning about new drugs or treatments.

"We've had people who refused to have chemotherapy, but after listening to our stories, they changed their minds," said Pacheco, whose group meets at MD Anderson Cancer Center in Orlando.

"We also talk about many things we might not feel comfortable talking about at home," she added.

Vicky DiMaria, an MS patient who coordinates a support group in Palm Coast, said she felt devastated when she had to quit her job, "which was my life for me." DiMaria was a local marketing manager for the Daytona Beach Area Convention & Visitors Bureau when she was diagnosed with MS in August 2003.

"The people at support groups can help you move your life forward. They're just great," said DiMaria. "We have people from all walks of life. Here you make friendships for a lifetime. It's been a blessing and an eye-opener. I now look at life differently."

Cuevas says she is already working on a new "mission" -- to educate more Hispanics on MS and let them know what services and treatments are available.

She said she's resorting to her "natural hyperactivity" and has already visited local governments' health departments to distribute literature on MS in Spanish.

Cuevas is also knocking doors at such places such as the local National Multiple Sclerosis Society chapter, where she first went to organize her MS support group. In fact, people there have their own plans for Cuevas; they want her to translate some of their information into Spanish.

"In anything I can get my hands on that'll help me spread the word on MS, I'll certainly go for it," she said.

Edgardo Martinez can be reached at emartinez@orlandosentinel.com or 407-420-6083.

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