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Friday, September 24, 2004

Group shows how to live well with MS



Maggie Downs

Chris Romano was attending Xavier University, working on his MBA, when he looked down at the notebook where he had been scrawling notes for nearly an hour.

The page didn't have any decipherable information. Just squiggly lines.

"I knew that isn't what the instructor had said," he laughs now. "This wasn't some Charlie Brown cartoon."

There were also days last year when the 37-year-old pharmaceutical salesman was forced to stop working at 11 a.m. to rest.

Sometimes the Landen resident would have to pull over to the side of the road from the fatigue. Then came the dizziness, tripping up stairs and walking into doorjambs.

And the extraordinary headaches.

At the time, Chris was working full time while attending graduate school. The father of four was helping his wife run a business while he ran two nonprofit organizations. He was also training for a marathon.

"The fatigue came on like a freight train," he said. "And to go from being so physically active to nothing was mentally draining, too. It really hurt."

When he visited a doctor, he was instructed to head directly to Mercy Hospital Anderson.

Chris thought he might have a brain tumor. So the diagnosis of multiple sclerosis - a disease in which one's immune system attacks the brain and spinal cord - came as a relief.

"I can live with this," he thought.

And he has. Quite well, in fact

"Sure, MS is bad," he said. "But you can overcome it."

About 6,000 people in our region have MS. It occurs when the myelin protecting the nerves is destroyed, which disrupts the signals transmitted through the brain and spinal cord. That means your brain could be telling your right hand to move, but your muscles never get the message.

Most people are diagnosed between ages 20 and 40. Risk increases for people who live in colder climates, have a family history or are of Western European ancestry.

To raise awareness of the disease, the MS Center is sponsoring the region's first MS Expo, 9 a.m. to 5 p.m. Saturday at the Northern Kentucky Convention Center. The expo will include information about the latest treatments, and products for people with MS.

New medications and therapy mean that Chris and others who are diagnosed with MS today are able to lead more normal lifestyles.

"Ten years ago, the deal was to go home and look into buying a wheelchair," Chris said. "Now you can live with it."

In March, Chris and Amie Deakin of Mount Lookout started a group for young professionals living with MS.

Amie doesn't have the disease. But through her work at Teva Neuroscience, which makes one of the four drugs used to postpone the effects of MS, the 28-year-old realized that the needs for young professionals with MS are vastly different than the support groups aimed toward older folks.

"There was nothing for younger, more upbeat people," she said.

The group, which is mostly social, has grown from three to nearly 30 people since the first meeting.

They get together at places like Teller's or Mount Adams Fish Market to talk with others who maintain an active, vibrant lifestyle.

The face of MS has changed, the YP group points out. Proper physical therapy and the right medication mean that someone with MS can continue life pretty much the same.

Chris is an ideal example of that.

Last summer there were times he could barely walk.

This past May, about a year after his diagnosis, he ran the Flying Pig Marathon - and completed it within 15 seconds of his best time ever.

"It's really easy to sit back and say, 'I have MS. It's going to wreck my life,'" he said. "But my attitude is that this is conquerable, and I'm going to have the life that I need."

For information on the monthly MS meetings, e-mail amie.deakin@tevaneuro.com.

E-mail mdowns@enquirer.com




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