MS support groups help men cope with the disabling disease
In his mind, Vito Seripiero can still do anything. It's his body that won't cooperate. At 46, the Boeing engineer finally accepted life with a cane. One weekday evening, he tells...
Seattle Times staff reporter
In his mind, Vito Seripiero can still do anything. It's his body that won't cooperate.
At 46, the Boeing engineer finally accepted life with a cane. One weekday evening, he tells three other men gathered around a table — all of whom, like him, have multiple sclerosis — that his strength remains; it's his balance and coordination that are shaky.
Not long ago, Seripiero fell while walking to his car. Later, at work, he tripped and bruised his hand. Then came another fall, just walking to the garage. And another, in the kitchen.
"I said, 'You know? Enough's enough.' For a long time, I refused to accept it. But I'm able to do more having [the cane] than not having it. I don't get as tired."
Multiple sclerosis, or MS, is known to affect about 400,000 people nationwide. Because two-thirds of them are women, general self-help groups pose uncomfortable settings for men to talk about physical effects such as sexual dysfunction and bladder and/or bowel problems.
"It seems to be common among us MS guys," says John Mudge, a former Web developer who now gets around with a motorized wheelchair. "We put off recognizing the inevitable."
Recognizing that people feel more at ease among those whose perspectives closely mirror their own, the National Multiple Sclerosis Society's Greater Washington chapter recently launched two monthly self-help groups especially for men. This one, moderated by Trevis Gleason, who relinquished a high-flying culinary career six months after his diagnosis, began meeting in Seattle this fall at the chapter's Fremont-area offices.
The men's groups join a growing number of specifically targeted groups planned or offered by the MS society that serve, for example, gays and lesbians, young mothers and the newly diagnosed. "We're trying to get people involved who might not normally contact us," says chapter program director Erin Poznanski.
Multiple sclerosis attacks myelin, the insulation around central nervous-system fibers. The damage hampers transmission of nerve signals, causing symptoms ranging from fatigue and poor coordination to numbness, paralysis and blindness.
"You're working so much harder to get the signals through," Gleason says. "It's like standing on a boat all day. You don't realize how hard you're working."
There is no cure, though drugs now help lessen the frequency and severity of attacks, slowing the progression of disability.
For Mudge, who still worries about providing for his family, it was a slow deterioration. "It's been a year since I even had a dream about walking," he tells the group. "I used to walk in all of my dreams. I don't anymore."
A stolen future
Gleason was traveling a quarter-million miles a year as Northwest regional sales director for a German manufacturing firm when he finally realized something was wrong. April 2001: He was in the Buffalo, N.Y., airport, on his cellphone, when the concourse elongated like a hallway in a horror movie.
Within two days he'd been diagnosed, and suddenly it all made sense — the falls, the clumsiness, the tiredness. Most people with MS are diagnosed between ages 20 and 50, and at 35, Gleason was right there in the middle.
He clung to his career but soon needed longer and longer weekends to recover from fatigue. "I realized I wasn't doing myself or the company any good," he says.
Within a couple of years, he realized he'd become a minority — unemployed and disabled, with a disease affecting mostly women. Steroid treatments had sent his body ballooning, but being unable to work was the oddest thing.
"There's a sense of loss you're trying to get your arms around," he recalls. "[Work is] who you are. You go to a party, and what's the first thing people ask? 'What do you do?'
"I realized — there I was, a man in my mid-30s. I had lived a full, professional life. And the future I envisioned was no longer there. So what the disease really does is steal your future."
In other words, retirement wasn't going to be at 70, fishing on some pond in Vermont. His retirement was right now.
A place to vent
Aside from an annual conference-call program where MS experts took questions from anonymous callers, there weren't any chapter-sponsored outlets where guys could vent freely.
Fathers worry about being unable to just throw a football around with their kids. Who'll protect their daughters when it comes time to date?
When do you tell your employer? How will your job be affected? When do you tell the person you're going out with?
For guys more guarded about their condition, Gleason proposed calling the group "Poker Night" to give them a way out of working late or social invitations. Sorry, I can't — I've got poker night tonight.
"There's a mom's group," Gleason deadpans, "but you wouldn't fit in there."
"But you might get some dates," Kelley says.
"That's right," Gleason says. "A cane — hey, it's like a puppy. It gets attention."
They talk about the latest drug treatments, upset stomachs and lost concentration as days wear on. They share examples of how profound fatigue and hypersensitivity have disrupted intimacy and desire. "I end up being the quintessential guy who doesn't want to be cuddled afterwards," one says.
(Poznanski, of the MS Society, says sexual dysfunction affects 82 percent of men with MS versus 52 percent of women.)
Kelley walks at Discovery Park, and he can tell: His left foot's starting to droop a little by the last half-mile. He's starting to get worse. "During my last attack, I couldn't feel my hands," he says — a frightening prospect for someone whose livelihood involves sketching.
Gleason tells the men about an upcoming MS seminar on disability insurance, but Seripiero, still adjusting to his cane, isn't sure he's ready for that yet. "I'm taking one thing at a time," he says.
But at least the men are here. "There's a lot of men not involved at all except for going to the neurologist and taking their meds," Gleason says.
And enough enthusiasm has built around the "Poker Night" concept now that the greater Washington chapter, spanning 23 counties, plans a major seminar for men this spring. The event, which will feature a neurologist, urologist and psychologist addressing men's MS issues, is set for April 30 in SeaTac. (For more information, call 206-284-4236 and press 1)
Gleason, meanwhile, still puts in a few weekly hours of work at a local market. Donning the chef's whites he once wore asoperations director for a culinary academy, he does paperwork and manages occasional catering jobs. "It keeps me, mentally, still part of my old game," he says.
But it's the work that some researchers are pursuing that feed his dreams now. Anticipating a cure, they're focusing on ways to repair damaged myelin once the disease is stopped. "To me, that's the biggest breath of hope in the world," Gleason says.
Marc Ramirez: 206-464-8102 or email@example.com
Footnote on Women and MS
Drs. Lily Jung and Claire Yang, both of whom have a special interest in MS, will speak at a women-only session sponsored by the Multiple Sclerosis Association of King County, 6:30-8:30 p.m. Jan. 24 at the American Red Cross, 1900 25th Ave. S., Seattle. To sign up call 206-633-2606. There is a $10 suggested donation.
Sam and Sara Lucchese create handmade pasta out of their kitchen-garage adjacent to their Ballard home. Here, they illustrate the final steps in making pappardelle pasta.