More MS news articles for May 2003
Wednesday, May 28, 2003 - 2:54:40 AM PST
By Mary Weston/Staff Writer
On a good day, Rhonda Sargent looks like any other 38-year-old woman going about her daily activities: shopping, walking, working or getting her nails done. On a bad day, she might be in a wheelchair, unable to stand on her own.
Nikki Riley, 43, has learned to pace herself. She never knows how she will feel from day to day. Every morning, she and her husband Brian decide if she can cook, clean house or do the laundry. "I can't do all of them, mentally or physically," she said. "We've learned to live in slow motion."
Both women have been diagnosed with multiple sclerosis. Every hour in the United States, another adult receives that frightening diagnosis, according to the National Multiple Sclerosis Society.
Rhonda and Nikki are forming a self-help group in Oroville for people with MS. The national society is sponsoring a free MS conference Thursday, May 29 from 6 to 7 p.m., at the First Congregational Church on Bird and Oak streets. Participants will discuss the possibility of a local self-help group, supported and funded by the society.
Nikki attends a self-help group in Chico. Rhonda was trying to start a group in Oroville. The two women met, discussed a support group, attended NMSS group facilitator training in Sacramento and became best friends. "The Nation MS Society offers a great deal of training for self-help groups," said Terence Keane of the Northern California Chapter.
Now, the two friends are working to spearhead an Oroville group: to share information, new medication tips and coping skills. "The people who come to a group seem to mesh so well," Nikki said. She said when people come to the group, they have so much in common they tend to become like family, as she and Rhonda have.
"Some of us find the only companionship we have is with the other members of the group," Rhonda said.
Terence Keane, of the Northern California Chapter of the National MS Society, said MS is a chronic, often disabling disease of the central nervous system. Symptoms may be mild, such as numbness in the limbs, or severe enough to cause blindness or paralysis. The progress, severity and specific systems in any one person can't yet be predicted, he said.
The two general types of MS, Keane said, are relapsing remitting and progressive, although there are other types that are combinations of the two.
Like approximately 85 percent of people with MS, Rhonda's symptoms have taken a relapsing-remitting course since she was diagnosed in 1999. "I'm dragging my leg today, which means I'm relapsing," she said.
A relapsing-remitting course is characterized by relapses, with intervals of partial to total recovery. Before MS, Nikki loved to dance and hike. "I tried to hike into Feather Falls last year and lost the use of my legs before I came out, and it (the paralysis) lasted three months," Rhonda said. "I walked out dragging myself with crutches and with someone helping me."
Rhonda spent the next three months in a wheel chair. She doesn't know when her next relapse will be or what path it will take.
"This is what makes the disease so difficult to deal with, the unpredictability," Keane said. "You never know if you will wake up blind, not able to walk to school or unable to pick up your kids at school."
With MS, Rhonda's own immune cells attack her nervous system inflaming nerve tissue in any area of the brain or spinal cord. The inflammation can destroy the covering of the nerve cells, leaving multiple areas of scar tissue. It's like an electrical cord, Keane said. When the cord frays, you get a short in the cord the electricity stops or short curcuits. "You can get mixed messages or you don't get messages at all."
Like many autoimmune system diseases, MS attacks primarily caucasian women, but Keane said there are cases in males and diverse racial groups in California. He said NMSS lends support and education to everyone.
Nikki has the progressive type of MS, which Keane said could be primary progressive, secondary progressive or progressive-relapsing. With primary progressive, symptoms occur and don't remit. Over 50 percent of people starting with relapsing-remitting will later take a progressive course, called secondary progressive.
Nikki's symptoms have taken a progressive path. Once the stiffness and difficulty using her left leg started, it hasn't stopped. "You can see the difference in the size of my legs," Nikki said. "This is called muscle atrophy." Nikki has to make a conscious effort to bend her leg. She supports herself and gets around in her house with the help of a cane. Nikki also experiences dizziness, forgetfulness and shakiness.
She said it has been difficult accepting that she can't do the things she used to such as digging in the garden and roller skating. "I tried to roller-skate last year and almost killed myself," she said. She has also broken her shoulder blade when she fell while trying to dig in the garden.
Still, she looks at the bright side. "One of the advantages of MS is my husband brings me coffee in bed every morning," she said. "And how many men get to shoot their wives every morning?," she ask smiling.
She said family members also have to cope with the disease. "My husband doesn't have MS, but he lives with MS every day. She said her husband suffers when he sees her limping across the room or yard.
Bryan bought her a cell phone with a direct line and a pager to his cell phone, so she can reach him anytime. "I worry all day at work because if she falls, I want to be there to catch her," he said.
Every morning, Bryan gives Nikki her shot. She takes one of the new medications for MS. In the last decade, researchers have developed new medications that slow down the progression of the disease, Keane said. He said much of the latest groundbreaking research comes from Northern California. The University of California, San Francisco and Stanford medical schools are top research centers for MS, he said. "This is a time of real hope for people with MS," Keane said. Scientists in Northern California receive more than $6.8 million in society research grants.
The Oroville self-help group will be funded and supported by the Northern California Chapter of NMSS. The society emphasizes wellness and empowerment, Keane said. The organization provides education, equipment, emotional support, exercise classes, family programs, and financial assistance to people with MS and their loved ones.
When formed, the Oroville group will meet on the third Thursday of every month at the Mercury-Register, in the conference room.
The public is invited to the free MS conference Thursday, May 29 from
6 to 7 p.m. at the First Congregational Church on Bird and Oak streets.
Participants will learn the latest about MS and discuss the feasibility
of ongoing meetings in Oroville. Anyone needing child care can call Jeannie
Mays, of the Butte County Department of Public Health, 533-9019.
© 2003 MediaNews Group, Inc.