Author & Founder Lorna Moorhead

MS MOMS new site under construction!  New services coming

 Pre-register your membership today and don't miss out!

 Reaching in, reaching out: Lorna Moorhead, a young mother with multiple sclerosis, launches a new group to help others learn to cope -- and live

By Lisa Rapaport
Bee Staff Writer
(Published Aug. 20, 2000)

Lorna Moorhead is one determined mother.

Less than a year after being diagnosed with multiple sclerosis -- an unpredictable neurological disorder that can cause loss of balance, coordination, vision and memory -- she has little time for the rage or fear or frustration that are par for the course with this chronic disease.

It's not enough that she struggles to keep up with an active 4-year-old and still find time for herself. Never mind that there are days she wakes with extreme, crippling fatigue and times when she can't remember common words. And don't mention the preschool homework to check, meals to prepare, laundry to wash or countless other tasks that come with an average day.

To cope, Moorhead sought out a support group to talk about everything from how to stave off fatigue in triple-digit heat to how to keep the romance in her relationship. And she thought it wouldn't hurt to have activities that healthy adults in their 20s and 30s take for granted -- mother's nights out, trips to the mall, family picnics or visits to the manicurist.

There are plenty of self-help groups out there for families dealing with illnesses ranging from cancer to schizophrenia, and 12-step programs abound for those with a whole host of addictions. The National Multiple Sclerosis Society sponsors meetings for newly diagnosed patients and their families and offers ongoing support activities. In San Francisco there's a group for gays and lesbians living with MS.

But Moorhead found nothing tailored to the needs of young mothers.

When her search came up dry, she didn't get mad. She founded MS Moms, a group dedicated to helping mothers -- and fathers -- cope with multiple sclerosis. The effort has taught her a few valuable things about Web design, nonprofit groups -- and herself.

The local MS society has been slow to warm to Moorhead's new organization, but hundreds of people nationwide have embraced it.

At her Web site -- msmoms.com -- parents come to chat, swap tips for keeping up with kids, share medical advice and seek out resources ranging from babysitters to wheelchairs. It's also a place for frank discussion of relationship problems that stem from some of the least attractive aspects of the disease: bowel and bladder problems, lack of muscle control and loss of sexual desire.

"I'm only 24 and I refuse to live with this disease as if it's the only important thing in my life," Moorhead says, sitting on the living-room couch in her Orangevale home.

"What's more important to me is finding ways to keep doing the things I was doing already, even if I have to do it differently. Nobody was out there telling me how, so I just did some research and started MS Moms."

To see Moorhead on the sofa with her son Stephan Starkey climbing over her lap and her fiancé Mark Reed at her side is hardly a picture of illness. Talk this breezy summer afternoon centers on the simple math problems Stephan learned at preschool and his favorite subject: all things Pokémon.

In high spirits, Moorhead strokes Stephan's hair as she speaks rapid-fire about plans to start up MS Moms monthly meetings at the Orangevale Community Center. She and Stephan even walk in their backyard garden, meandering through rows of vegetables and rattling off their names as they go along.

But all this energy comes at a price.

To prepare for the afternoon interview, Moorhead had to rest in bed most of the previous day, a strategy that has become all too common for her. Where she used to take on new projects or plan outings at a moment's notice, Moorhead now has to build up reserves of energy to stave off fatigue that can come even from a few hours of conversation. Thanks to a summer breeze, she was able to do all this without suffering immediate fatigue.

Bigger events, like a State Fair outing, pose a greater problem: Triple-digit heat exacerbates fatigue and muscle problems that are a daily part of life with MS. Last year's fair brought on several days in bed after Moorhead wore herself out wandering the midway in the searing heat. For a trip to the fair Friday, Moorhead rented a wheelchair.

"The idea of a wheelchair is so complicated because I don't like to have to depend on others, and that makes me look and feel so helpless," Moorhead says. "But I won't let my pride deprive my son of things we're used to doing together."

It's this constant balancing act of mental and physical well-being that MS Moms was built to address.

On the subject of heat and fatigue, message boards on the site overflow with creative ideas: sit in a wading pool while kids play outside, carry a super soaker squirt gun to make a game out of staying cool or dress in wet clothing to avoid overheating.

These may sound like small things, but simple tricks like this make a big difference in the quality of family life.

Carolyn Cook, 36, of Mammoth Lake, is an Internet user who has found this practical advice at msmoms.com. With few resources available in her small Yosemite Valley community, Cook went online after her diagnosis three months ago to figure out how to explain the illness to her young son.

"When I first found MS Moms, I was having a rough time because the heat was keeping me from playing basketball with my son Ryan, who at 6 is too young to understand why I'm so tired," Cook says on the phone from her home. "Then I found all these ideas on the site, and it's now the first place I turn to on a bad day."  

Janie Williams, 28, of O'Brian, Fla., diagnosed with multiple sclerosis after two years in the Army, burst into tears on the phone describing how the site has made a small dent in the vast isolation she has felt since her diagnosis. Williams lives several hours by car from Jacksonville, where the nearest MS society chapter is, and the Internet is her only source of comfort.

"I've got MS and it's kicking me. I don't have any room to vent except this site," Williams says.

Now, Moorhead is trying to offer more than chat rooms to those with MS. In July, she began holding monthly meetings with area families coping with the disease.

The first meeting wasn't a huge success. Moorhead rested up for a full day beforehand, and then arrived at the Orangevale Community Center armed with literature, dozens of pink and white carnations and plenty of snacks. But only her family and a few friends turned out.

As it happened, the small crowd worked out for the best. Much of the meeting, Moorhead says, was spent with a janitor trying to figure out how to get air conditioning in the room. With a full house, the heat would have surely brought on fatigue and soured potential members against coming back, Moorhead says.

"I look at it as a gradual process of building interest and learning what works," she says. "So this isn't a blow, it's just an incentive to work even harder."

Attitude like this runs in Moorhead's family.

Moorhead's mother Jean Duffy was a state legislator who worked with Mothers Against Drunk Driving founder Candy Lightner to pass tougher drunken-driving laws. When having a few beers after work and then hitting the road was normal and viewed as no big deal, Duffy had an uphill battle. MADD is now in its 20th year.

Rob McElderry is a lobbyist for the California Medical Association. He's also Moorhead's brother.

"The apple doesn't fall far from the tree," he says from his downtown Sacramento office. He believes the MS diagnosis has helped his sister find her purpose in life, and he's helping by calling neurologists to get them to donate time -- and maybe money -- to the cause.

Still, McElderry said that his sister has a lot to learn about politics.

"She's got a fantastic idea and has worked really hard, but she's also attached to this name that is making it hard for her to get wide support," he said.

The snag is a perception that MS Moms is only for mothers.

Click on the Web site and it clearly invites fathers, kids and all other family members to get involved. But ask the Mountain Valley California Chapter of the National Multiple Sclerosis Society in Sacramento about this new group, and they shy away from offering their official support.  

"Because we don't discriminate, we don't want a situation with just one particular group involved and others left out," says Betty Thompson, program director for the local chapter.

With limited resources and many needs to meet, Thompson says many members would have to request the mothers group before they could endorse its meetings. And Moorhead would have to go through the same training required of all other MS support group leaders.

Lou Patterson runs the local MS society's support group for the newly diagnosed. He thinks MS Moms has plenty of potential.

Because he knows a lot of folks who are too shy to tell strangers how they honestly feel about the disease, he sees a lot of merit in the less confrontational atmosphere of Internet chat rooms. Once people get comfortable online, he says, they might feel more at ease coming out to a group meeting.

Patterson, 51, speaks from personal experience. Diagnosed only in the last year, he went through most of his life attributing MS symptoms of recurring spasms and lack of muscle control to wounds suffered during a tour of duty in Vietnam that left him with partial paralysis and constant stomach pain. After years of not talking about his symptoms, he now welcomes the chance to give and receive support.

"Most of my life I had all these symptoms and just kept soldiering on, not saying much unless it got so bad I literally thought it was life-threatening," Patterson says from his Carmichael home. "Now that I can look back this way, I think any outlet for taking about the disease has to be a good thing."

Moorhead couldn't agree more.

She's selling vegetables from her garden to pay for the cost of mailing out fliers about MS Moms, and she hopes to see swelling crowds at MS Moms meetings in the months to come.  

"I really believe in what I'm doing for the first time in my life," Moorhead says. "I feel like I'm doing something right and I'm going to stick to it no matter what."