Support for men with MS

Local MSfits group founded for males suffering from disease

June 01, 2007|By Joanna F. Smiley | Joanna F. Smiley,Special to the Sun

Four years ago, Kurt Clodfelter's legs gave out while he was mincing onions in his restaurant. Next thing he knew, the room swallowed him up and - smack - his 230-pound body hit the floor.

Three months later, he learned why: he had relapsing/remitting multiple sclerosis - a well-known diagnosis but one long considered, in his words, "a chick's disease" because it strikes three women for every man it devastates.

The degenerative neurological condition, which affects 400,000 Americans and up to 2.5 million worldwide, can produce a wide variety of symptoms. They include loss of strength, numbness, vision problems, tremors and depression. Victims may look and feel fine one day, but be virtually incapacitated the next.

MS took its toll on Clodfelter, a 26-year-old Severna Park resident who attended the Culinary Institute of America, once worked as a strip club bouncer and now manages the wine section at a spirit and catering business in Arnold.

"I hate to say it, but there's an expectation in society on men that we're strong enough, big enough to do anything," he says. "There's times when my left leg is dragging, when I don't look that strong. I had to give up my career as a chef because of the uncertainty of the disease."

He also worried about the aftermath of the treatment, which resulted in two bouts of optic neuritis that cost him the vision in each eye for up to six months. He worried about the ultimate effects of the disease on his new marriage - including his sex life. And he worried about maintaining his self-confidence.

"I still want to be that macho guy; a man's man," he says. "The type of guy that you always looked at in a room and asked for help fixing something."

That's when he started doing his research and noticed a giant hole in the Maryland MS support group network - there were no signs of meetings geared solely to men.

"Why isn't there a group out there just for me?" he asked his wife, Kristi, a cosmetologist he married shortly before he was diagnosed.

So seven months ago, he decided to create his own MS support group - called the "MSfits."

"We're the frequently forgotten minority," he says of how he came up with the group's name.

The MSfits will hold its first support group meeting for Maryland men battling MS on Monday at the Columbian Center in Severna Park, where he expects to have a fully stocked bar.

"Yes, it's stereotypical that guys get together and need a beer, but at the same time, to foster the fellowship it wouldn't hurt," Clodfelter says.

Derrick Jeanmarie, 41, also sees a good reason to keep in touch with other men with MS. He was diagnosed in 2002 when he checked himself into a hospital one morning after bumping his head and snapping his neck on his way home from work.

"They found lesions in my brain," says the 6-foot, 2-inch, 230-pound uniformed Secret Service officer from Hughesville.

The first few years after Jeanmarie's diagnosis were a tough time. Like Clodfelter, he developed optic neuritis. His short-term memory started to fade, his legs wobbled without warning and he says his wife noticed that he was depressed.

The Air Force veteran, former boxer and active long-distance runner longed for the days when he had full control over his body. "My wife tells me I have a sense of denial about my MS," he says.

Although he frequents the gym and works night shifts at the White House, Jeanmarie has noticed he can't run like he used to. "I would think that mentally there's things I still have to deal with," he says.

Ed Duggan, 61, an institutional research analyst at Goucher College, has been dealing with MS for decades. Forty years ago, at his Army physical, he was diagnosed with a rapidly progressing form of the disease. "If it weren't for the MS, I would've been drafted," he says, joking.

In 1997, Duggan's MS got the best of his legs, and he now uses a wheelchair. Ironically, he says, his life gets better by the day - with his set of wheels, Duggan is now able to sail, play sports and he even plans to start a "competitive MS Olympics team."

"I only wish I had [a wheelchair] when I was bringing up my kids," he says. "There were a lot of things I couldn't do with them. Not being able to play basketball with my son was a big thing for me.

"Unfortunately, men do fall into certain stereotypes. You want to be able to be a husband, a father, support your family. Obviously, women can do that, too. But still, it was difficult."

Amanda Culler Glenn, marketing director for the National MS Society Maryland Chapter, says she immediately recognized the value of the MSfits.

"Kurt approached the society and felt like males needed a specific forum to discuss the kinds of issues that men living with MS may face. The types of issues discussed and the ways that topics are presented can be unique for men," she says.

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