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When it comes to funding a cure for MS, the Scriveners are in it together

Staff Writer

Staff Writer

April 15, 2002|BY KATE COLEMAN

katec@herald-mail.com

Lisa Scrivener is coordinating registrations for the seventh annual Hagerstown MS Walk that will take place Saturday, April 20, at Antietam National Battlefield.

Why?

"It's just being part of the family," she says.

The Scrivener family - the whole family - has been involved in the National Multiple Sclerosis Society's fund-raising events since Bill Scrivener - Lisa's brother-in-law - was diagnosed with MS in 1991.

Bill's sister, Virginia Scrivener, helped to start the walk in Hagerstown in 1996. She will be helping at Antietam. Siblings Christy and John - Lisa's husband - will be there. Bill's parents are also involved. Elaine is volunteer coordinator and Tom says he's a "gofer."

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Bill's wife, Cheryl, helped to start a walk in Westminster, Md., in 1992.

Why?

"Because I feel like I have to be involved. It's not an obligation, but I have to be an advocate - so we can find a cure for this beast," she says.

A variable disorder

Multiple sclerosis is a chronic disease of the central nervous system. The disease is different for each of the estimated 250,000 to 350,000 Americans who have it, according to information on the National Multiple Sclerosis Society Web site at www.nmss.org.

No one cause is pinpointed, and several factors - viral, environmental, genetic - play a role. An abnormal immune response against the central nervous system is involved.

Myelin, the fatty tissue surrounding and protecting nerve tissue, is damaged, leaving multiple scars called "scleroses." Without myelin, nerves have trouble conducting messages to and from the brain - thus the symptoms of MS, which can range from tingling and numbness to loss of vision or paralysis.

MS affects more women than men and is more common among Caucasians, especially those of northern European ancestry.

Most people with MS are diagnosed between the ages of 20 and 40. The arrival of magnetic resonance imaging (MRI) technology has made diagnosis more conclusive.

Several years ago, a definite diagnosis was hard to obtain.

For instance, Bill Scrivener was mistaken for someone who had had too much to drink. Rosalie Hollinger, who was diagnosed 23 years ago at age 41, was initially dismissed by doctors as a bored housewife.

There is not yet a cure for MS, but research is promising, and treatments have been developed in the past few years.

The United States Food and Drug Administration has approved five drugs for the relapsing-remitting forms of the disease: Avonex, Betaseron, Copaxone and Rebif, all self-administered injections. Novantrone, also approved for treatment of secondary progressive MS, must be administered by infusion, into a vein, by a physician.

In people with MS, the immune system incorrectly identifies and damages the body's own myelin and nerve fibers. These drugs intervene in that process, according to the National Multiple Sclerosis Society 2001 "Putting the brakes on MS" pamphlet.

The medications have been shown to decrease the number and severity of MS relapses. Relapses are the sudden worsening of symptoms that last at least 24 hours. The drugs also reduce the formation of new brain lesions.

Bill Scrivener, 36, takes a once-a-week intramuscular shot of Avonex.

For a few months after starting the treatment, he experienced the flu-like side effects that lasted for a day each time.

MS affects the whole family

He dismisses that discomfort with a shrug, but the disease his wife calls "the beast," has affected his life and that of his family.

Scrivener, who has master's degrees in business administration and biomedical science, no longer works outside the home.

"He's been humbled, but he's stronger than ever," says Cheryl Scrivener of her husband.

He's decided what his gifts are and is using them. He's "Mr. Mom," at home with his children, involved in the religious education program at his church, and volunteers at his children's elementary school, helping kids with reading, she says.

Rosalie Hollinger used to like to read - particularly the novels of John O'Hara, but she doesn't read anymore. She can't hold a book or turn its pages.

In Hollinger, 64, the disease has caused paralysis of her arms and legs.

She had her first attack in 1979. "I was bowling. That day I thought I had the flu."

She recovered for a year, but between 1980 and 1984, "she went downhill," says her husband, Dale Hollinger.

Rosalie couldn't stand. Then she lost the use of her hands.

"You live with it," she says.

The Hollingers appreciate the MS organization's services and information.

"Information is a big thing," says Dale Hollinger, who is on the board of the Maryland chapter of the MS Society.

Programs for people newly diagnosed with MS - "the scary phase" - are helpful, he says.

He'll be helping at the walk at Antietam as well.

Different types of MS

Relapsing-remitting: Clearly defined, acute attacks with full or partial recovery and no disease progression between attacks.

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