MS group unites

"Knowledge is power," Mitzi Fuentes said.

In January, Fuentes found out she had multiple sclerosis. When her doctor asked her what she knew about it, she answered that she knew MS was incurable, but nothing else. So she went online and found out everything she could about the disease.

According to the National MS Society, more than 400,000 people in the United States have it.

Monday was the beginning of MS Awareness Week, and although many are aware of the disease MS, few actually know about it or what it is.

"There’s a lot of people in the community who don’t know about MS," said Laura Kinney, co-leader of the CSI West Texas Support Group. "They see us and say, ‘You don’t look so bad.’ "

On the other hand, Rosella Russell, the group’s current leader, said sometimes perception can go to the other extreme.

"You can get on the Internet and Google ‘Multiple Sclerosis’ and scare yourself," said Russell, who was diagnosed seven years ago. She said she was in denial for the first six months.

One of the main reasons the group exists is to counteract this for people who’ve just found out they have the disease.

"We want them to know there’s hope and to relieve any fear," Russell said.

"CSI" stands for "caring, sharing and inspiring," which is their approach to living with MS.

" ‘We have MS; it doesn’t have us,’ we say. We don’t let it take over our lives," Kinney said.

Kinney said she’d had MS for several years before being diagnosed 12 years ago, when she was still a teenager. Since then, she’s had to deal with the disease on top of everything else in her life.

"It’s been a journey," Kinney said. "When you have two kids and MS, it’s chaos."

Since Fuentes was diagnosed two months ago, she’s appreciated the comfort being in the company of other people with MS can provide.

"Family members are very loving and want to be helpful, but they just don’t understand," Fuentes said. She said that since she went to her first meeting in February, the group has helped her understand a lot about what she was feeling, emotionally and physically, and the treatments available.

Russell Wilson, meanwhile, has had MS since 2001, but Saturday’s meeting was just his third with the group. He said that he’s had enough experience with medications that he’s already used most of them and knows what works best for him.

Where the group has really benefited him is in the different programs it brings in, such as massage therapists with an understanding of MS and the Bioness Inc., foot-drop system.

"I walk with a cane," Wilson said, explaining that without it, his weak left leg causes him to veer. Getting a chance to try to the device, Wilson thought it was promising.

"I was able to walk around straight," Wilson said.

Sometimes, it’s that simple.

MS doesn’t have a cure yet, but Rosella Russell the support group is continuing to try to stay up to date with all of the latest options, such as a water aerobics program scheduled to open in Midland in June, and a presentation on a new medication scheduled for 6:15 p.m. April 1 at the Barn Door. The group is also involved in publicly pushing awareness, such as through the National Multiple Sclerosis Society’s annual walk on May 1 to raise money for research and funding of programs.

For Fuentes, finding out all she can has helped her to better live with her disease, but she urged everyone to educate themselves.

"The more you know, the better you can deal with someone who has MS," Fuentes said.

What is MS?

According to the Mayo Clinic, "Multiple sclerosis is a potentially debilitating disease in which your body’s immune system eats away at the protective sheath that covers your nerves. This interferes with the communication between your brain and the rest of your body. Ultimately, this may result in deterioration of the nerves themselves, a process that's not reversible."

Types of Multiple Sclerosis

>> Relapsing-Remitting MS (RRMS): Symptom flare-ups followed by recovery; stable between attacks.

>> Secondary-Progressive MS (SPMS): Second phase of RRMS; progressive worsening of symptoms with or without superimposed relapses; treatments may delay this phase.

>> Primary-Progressive MS (PPMS): Gradual but steady accumulation of neurological problems from onset.

>> Progressive-Relapsing MS (PRMS): Progressive course from the onset, sometimes combined with occasional acute symptom flare-ups.

SOURCE: MS Association of America