MS Self-help Group Leaders Receive Award

MS Self-help Group Leaders Receive Award

Chuck Caton and Rosanne Durand co-facilitate the Loudoun County MS Self-Help Group.

Chuck Caton is no longer angry with God.

He was plenty mad, though, when he was first diagnosed with multiple sclerosis (MS) in 1993.

Eleven years later, Caton, 51, of Sterling, said he has come to know that God will not give him more than he can handle. These days he describes himself as "very happily single, and that’s with an emphasis on ‘happily.’"

Rosanne Durand, 46, of Leesburg, credited God and her own determination with defying the odds when she was first diagnosed with MS in 1992. Her physician said she would never walk again. Her right arm was immobile, affixed to the side of her chest, and she could only move two of her left fingers. She followed all of the physical therapist’s instructions. "If they told me to do 10 leg lifts a day, I did 10 leg lifts," she said. "Truthfully, I believe God stepped in."

Now she is mobile and has replaced her wheelchair with a cane.

Caton and Durand also attributed their physical improvements and stability to newly discovered medications.

Their ascent from feelings of devastation to optimism is largely due to their involvement with the Loudoun County MS Self-Help Group, the pair said. They joined in 1999 and later became co-facilitators. The National Capital Chapter of the National Multiple Sclerosis Society recently gave each of them Service Awards for supporting and promoting services for people with MS.

THE SELF-HELP GROUP provides opportunities for people with MS to share common experiences and learn together. As many as 35 people meet from 2-4 p.m. on the last Sunday of the month — except July and August — to share experiences and information, encourage newcomers, socialize and listen to speakers. Once a year, they go out to dinner, and they have a holiday party in December. The rest of the year, members take turns providing cookies and beverages.

The group has been meeting at the Rust Library in Leesburg, but has outgrown the space and is looking for someone to donate a wheelchair-accessible space.

February’s meeting will be held at the lunch room at Nordstrom’s at the Dulles Town Center.

Caton said Sunday that he learned about the self-help group from a notice in a local newspaper. "I wasn’t able to get out. I was on a lot of meds, and I was fighting severe depression," he recalled. "I was able to talk to people who are experiencing the same thing. I had people say: ‘We can get through this.’"

He realized he could, because they had. He said he didn’t feel so alone.

Durand said she called the National Multiple Sclerosis Society for advice about her insurance. "Emotionally, it was a very down time for me," she said. "I couldn’t even leave the house."

She did not get the answers she was looking for regarding the insurance, but she learned about the self-help group. Durand said she was reluctant to join, because she feared seeing someone worse off than she. "That would mean I would have to think about what my future would be," she said. The experience was far different than she thought it would be. "Instead of thinking of how terrible it would be, it made me look at it more optimistically. It’s not that bad."

MS IS A CHRONIC, LIFE-LONG and often disabling disease that randomly attacks the central nervous system. Most people are diagnosed with the disease between the ages of 20 and 50. Symptoms may range from tingling and numbness to paralysis and blindness. The cause is unknown and there is no known cure.

Because the disease affects everyone differently, some members cannot get out of bed to attend the meetings. Caton, Durand and other members visit and call these people. "I do a lot of phone calls," he said.

Wendy Whalen, 35, of Sterling, is another member of the group who reaches out to others. "Chuck had a girl who was newly diagnosed," she recalled. "He was kind of funny. He called me and said, ‘She’s a girl asking girl questions.’ So I called her."

Whalen said members are ready to help when someone has an "episode," and cannot get out for food or prescriptions.

Caton, who uses a wheelchair and truck to get around, was not going out much when he first joined the group, so Whalen started taking him to the movies and dinner every Monday. She is one of four members who doesn’t need a wheelchair. The self-help group has about 35 members, with an average of 16 attending each meeting. Their ages range from 20 to 75 years old.

"We all kind of help each other," Whalen said. "It has become a little family. You can go into a relaxed situation and talk about what problems you are having."

JEANNE ANGULO, CHAPTER president, said the self-help group members share information about the side effects of a drug, trouble with wheelchair access to a metro stop or a problem with an employer. "They become our eyes and ears," she said. The chapter serves as an advocate and raises money for research.

Durand said one woman might have experienced dizziness when she was in the shower. Another member will show how he positions his body to stop the vertigo.

"Or someone says, ‘Get a shower chair,’" Caton said. "Now, I don’t fall down."

Whalen said Caton and Durand are good at getting members to track down information that would benefit the group. She has been working with Ida Lee Park to get a water aerobics class specifically for people with MS. "Chuck and Rosanne are good at delegating things to different people who have different connections," she said.

Abra Frankel, communications manager for the national chapter, said volunteers are vital to the chapter’s work. "It is essential to have amazing volunteers like Chuck and Rosanne out in the community to help us to carry on the mission or we wouldn’t have the reach we have." Every county in the Washington, D.C.-metropolitan area has at least one self-help group, she said.

She said the support group is important, because people with MS can talk with people who really understand the disease. "The people they interact with on a day-to-day basis may not understand exactly what the person with MS is going through," she said. "They may empathize and be supportive, but it’s not the same as being in a room with a group of people who are living with the same disease."

The Loudoun chapter was formed in the 1970s by Gloria Barber and Dr. Elizabeth Decker, who both had MS. The chapter presented a similar award to Barber four years ago; Decker already had passed away.

ABOUT 400,000 AMERICANS have MS, and 200 people are diagnosed weekly. About 6,000 men and women in the Maryland, Virginia and Washington, D.C., area have the disease. Actress Annette Funicello, comedian Richard Prior and talk show host Montel Williams are among the prominent people who share the illness.

There are four categories of MS.

* Relapsing and remitting is the most common. A person will have an exacerbation or episode, such as going blind or experiencing tingling. But then the symptoms disappear. "It comes and goes," Caton said. "Quite a few ultimately switch over to secondary progressive." Durand said her illness falls in the relapsing and remitting category.

* A person with secondary progressive slowly regresses. "That’s what I have," he said. "You go down three steps and you only come back two."

* Anyone who falls in the progressive category quickly spirals down.

* People who contract the benign form will have an episode and it will be another 30 years before they experience another one.

DURAND IS A RETIRED school teacher and stay-at-home mom. She and her husband, Tom, have two children, Victoria, 10, and Francesco, 4. She taught chemistry and physics at a high school, and later in college.

Caton is a technician for Transaction Network Services in Reston, which provides the backbone network for credit card transactions. "I do all of my testing from my computer," he said. "They are terrific about making sure the workplace is handicapped accessible."

He has two boys, Will, 32, of Berryville, and Donald, 27, of Long Beach, Calif.

Angulo said there was no treatment for MS when she became president of the chapter 12 years ago. Now there are six.

Caton and Durand said they were "shocked" when they learned of the award. "You and I have discussed this," he said.

She nodded. "We feel like we don’t do anything special. It’s fun!"

"How can you be awarded something if you get this much enjoyment out of it?" he asked.

Durand said members spent a lot of time complaining when she first joined, but the group has evolved into positive dynamics. "They come to commiserate and look for a way to turn their problems into something positive," she said.

Caton said the entire group is deserving of the honor. "I’ve received more from the people in the group then we’ve given to them," he said.

Durand, looking directly at Caton, said, "I can feel the impact you have made on me."