More MS news articles for June 2001

Rolling for multiple sclerosis

Disease does not hamper man's fund-raising efforts

http://www.amarillonet.com/stories/061201/fea_rollingfor.shtml

Web posted Tuesday, June 12, 2001
5:03 a.m. CT
By James A. Fussell
Knight Ridder Newspapers

KANSAS CITY, Mo. - Rex Brick could hardly move. It was 1998, and following a flare-up of multiple sclerosis symptoms he lay in a hospital bed with no function on his right side. Beset by temporary speech paralysis and extreme fatigue he watched TV in his room and longed to feel better.

Then he saw the commercial that would change his life.

It was a commercial for the MS 150 bike tour. The Overland Park man, who had never been much of a bike rider, resolved to recover and take part.

He did more than that.

In the last two years the 42-year-old not only completed two MS 150s, but also raised more than $32,000 for the Mid-America chapter of the National Multiple Sclerosis Society.

What's more, the $23,000 he raised last year qualified him for a free trip to Australia in March to ride in the national MS Society's International Tour of Champions.

In addition to bike tours, the society also raises money through the MS Walk.

While some walk to raise money, Brick must ride.

"I bike much better than I walk," he said.

Brick's biking prowess helped him land the Australia trip.

There was only one problem. The Australian bike trek would last nine days and cover 380 miles. To complete distances like that, Brick would need a tandem recumbent bike, a bicycle built for two where riders pedal while reclining in chairlike seats.

He knew of no recumbent rider who could go on the trip. That is, until he went to a party last January and met a Lenexa man named Darrel Ochs.

Ochs, one of a few locals who regularly ride a tandem recumbent bike, made a stunning offer.

He would ride with Brick in Australia - and even pay his own way.

Brick was thrilled.

"It was a wonderful feeling," Brick said, "although I didn't know for sure at the time whether I would be healthy enough to make the trip."

Brick suffers from more than just multiple sclerosis, an unpredictable disease of the central nervous system that affects the ability of the nerves to conduct electrical impulses to and from the brain.

He also has myasthenia gravis, a neuromuscular disease that affects the ability of the voluntary muscles to receive nerve impulses.

On his worst days he doesn't get out of bed. He's so fatigued, his muscles simply won't support his weight. Often severe balance issues accompany the fatigue.

But in the end Brick did go - one of only five MS fund-raisers in the country to make the trip. He and Ochs, the only tandem recumbent team out of 1,500 riders, took digital photos and set up a link on Och's company Web site - www.laserequipment.com.

Ochs was impressed by Brick's resolve.

"This was a difficult trip for him," Ochs said. "He was continuously on medicine. And he walks with a walker, but the only thing we could take on the bike was a cane. The greatest problem we had was when we tried to stop and rest. It's difficult for him to walk anywhere with just his cane. (But) he never complained once."

As far as Brick knows, he was the only rider with significant, active MS symptoms. Which left people wondering: How did he ride the 380 miles with his disabling condition, and how did he manage to raise more than $23,000?

The fund-raising was simple, Brick said. He wrote letters to 150 friends, family members, co-workers and companies. More than 125 donations came in - the most generous from US Central Credit Union, where his wife works.

What about his MS symptoms?

Still present. Thankfully they didn't flare up enough to prevent him from finishing. Actually, the cycling added strength and reduced his stress.

But although he recommends physical activity for MS patients, he would not recommend such a rigorous level.

"There are consequences," he said. "When I concentrate on getting my leg muscles to work it's at the price of having other muscles shut down for a time, such as my kidneys and bowels.

"I watch it very carefully."

Despite the risks, the Down Under experience did not disappoint.

Brick got to see Sydney, experience genuine Australian hospitality, even try Kangaroo meat.

"It did not taste like chicken," he noted dryly.

The only difficult thing? He had to leave his wife, Kathy, and his two children, Jared, 13, and Caitlin, 11, at home.

His son actually turned 13 when he was in Australia.

Brick realized it a day late.

But thanks to the International Dateline, he was able to call on time.

He's now raising money for 2001 and hoping again to earn the free trip to Australia in 2002.