| Cowboy 2005-01-27, 8:37 am |
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The Seattle Times
January 12, 2005 Wednesday
Fourth Edition
"MS guys"; Despite weakened bodies, strong shoulders to lean on
Marc Ramirez, 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.
In addition, because many have assumed breadwinner status well before being
diagnosed, the disease ? which attacks the central nervous system ? poses
realities that some men are slow to concede. Accustomed to being in charge,
they now have to ask for help, and find their athleticism, productivity and
sexual desire waning.
"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.
His legs felt like they were moving through hip-high water. By the time he
got home his foot was dragging. In the morning, he had paralysis on one
side, and his face felt doughy.
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
Seeking to fill the void that used to be a career, Gleason, who hasn't lost
his sense of humor, decided to volunteer with the MS Society's local
chapter. He stuffed envelopes; he gave talks. When the chapter began
initiating focused self-help offerings, he seemed to be a perfect fit for
the Seattle men's group.
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.
While the name has been slow to catch on, the men seem grateful to have an
outlet. At last month's meeting, Gleason was joined by Seripiero, Mudge and
construction estimator Brian Kelley, 39. "Are there any other groups in
Seattle?" Seripiero asks.
"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 mramirez@seattletimes.com
Finding a group
For more information about joining or forming an MS support group, call the
MS Society at 206-284-4236 (press 1) or 800-344-4867. Or see
nationalmssociety.org/was.
Support groups
Self-help groups being launched by the Greater Washington Chapter of the
National Multiple Sclerosis Society include:
Newly diagnosed group
Who: People younger than 30.
Where: Tacoma.
Why the group was formed: Younger people who have yet to develop many
outward signs of the disease feel uncomfortable in group settings with those
much older or in more advanced stages. Getting young adults to participate
in group sessions can be difficult, 25-year-old facilitator Kat Shank says;
few want to face problems that aren't yet there. "A lot of people my age,
they're in denial," she says.
Issues: Disclosure to employers and possible discrimination out of worry
over their future condition. Whether they should have children.
Gay/lesbian group
Who: For gay, lesbian, bisexual and transgender community.
Where: In Seattle starting early this year.
Why the group is being formed: So participants who fall into this group
would feel more comfortable discussing relationships and less pressure about
when and if to disclose their orientation in general settings.
Issues: Mostly the same as in general settings, but with complete acceptance
of who they are. "It's so people can open up about things and not have to
qualify it," group facilitator Gary Sarozek says.
MS Men's groups
Where: One in Seattle, another in Tacoma.
Why the groups were formed: Because men, especially those who identify as
strong and responsible, are often less willing to be forthcoming about
sensitive issues in general settings; two-thirds of those with the disease
are women.
Issues for men: Weakness, sexual dysfunction, bladder and/or bowel problems,
parenting, dating, disclosure of their condition to employers.
More information on MS support groups, 2
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.
--
For this and many more articles, see Paul Jones' website at
http://www.mult-sclerosis.org/
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