Published January 2003

LIVING & WORKING
WITH MS

Snohomish County Business Journal/KIMBERLY HILDEN Since her multiple sclerosis diagnosis, Barbara Ashford Clark (sitting) has been training her staff, (from left) Cassandra Evans, Morgan Kuntz, Jan Wettig and (not pictured) Dana Stoltz, on her company’s procedural manual, a plan that has every daily and annual procedure the staffing agency requires.

Diagnosed with multiple sclerosis in 2000,
the president of Ashford Clark Personnel
is facing the disease with determination
and wants to help others do the same

By Kimberly Hilden
SCBJ Assistant Editor

One spring day in 2000, Barbara Ashford Clark’s world changed in the course of a minute.

That day, the president of Ashford Clark Personnel had been feeling fatigued. She figured it was from working too hard or that maybe her age — she was 62 at the time — was catching up to her.

Suddenly, while she was sitting at the desk in her Lynnwood office, her vision splintered and her head started to spin.

She called out to one of her staff for help and waited for whatever would come next.

“My vision cleared within approximately 60 seconds, and all I could do was hold on to the desk and the hand of Jan Wettig, my longtime colleague, until it did,” Ashford Clark said.

From there she went to her doctor, who first thought it might have been a small stroke.

“But one day after listening to me go over my past medical history from 30-plus years ago, he blurted out these words that I will never forget: ‘I think you have MS,’ ” Ashford Clark said. “I was totally and completely stunned, and all I could say was, ‘What are you saying to me?’ ”

MS — the ‘snowflake disease’

What the doctor was saying during that visit in April 2000 was that Ashford Clark had a probable diagnosis of multiple sclerosis, a disease of the central nervous system that interferes with the brain’s ability to send and receive messages.

While the cause of the disease remains a mystery and there is no cure, scientists do know that in people with MS, the body’s immune system attacks the protective sheath, the myelin, surrounding the nerve fibers of the brain and spinal cord. When the sheath is damaged or destroyed, nerve impulses to and from the brain are distorted or interrupted, leading to impaired bodily functions such as walking, speech or sight.

According to the National Multiple Sclerosis Society, about 300,000 Americans have MS, with the disease striking most often between the ages of 20 and 50. About two-thirds of those diagnosed with MS are women, and the disease occurs most commonly in Caucasians with northern European ancestry.

Symptoms of MS may include muscle stiffness or spasms; blurred or lost vision; unusual fatigue; numbness or tingling; dragging of the feet or loss of balance; poor coordination; tremors; speech problems; problems with memory, concentration or problem-solving skills; problems with bladder, bowel or sexual function; and partial or complete paralysis of portions of the body.

“MS is one of the most common chronic neurological diseases for people in their 20s through 40s,” said Dr. Nancy Lellelid, a neurologist at the Everett Clinic and a member of the Pacific Northwest Alliance of Multiple Sclerosis Centers. “It is diagnosed by a clinical exam and history along with a supplemental MRI (magnetic resonance imaging scan).”

But each case of MS is unique, with different symptom combinations and progression, Lellelid said.

Ashford Clark agrees.

After her “probable” diagnosis of MS, she was sent to Dr. Craig Smith, director of the Regional MS Center at Swedish Medical Center and also a member of the Pacific Northwest Alliance.

From him, she received a definite diagnosis of MS — and information about the disease, including the fact that it has struck children as young as 5 and has been diagnosed in people in their 90s and that in some people, symptoms can flare up for a time and then disappear for months or even years, while with others, symptoms can get steadily worse over time.

“It’s known as the snowflake disease — no two people are alike,” she said.

Dealing with the diagnosis

When Ashford Clark received her “definite” diagnosis in August 2000, it wasn’t the first time she had come face to face with MS.

When she was in her early 30s, she spent five weeks in the hospital with an inflamed spinal chord. At the time, a doctor mentioned MS as a possibility. But Ashford Clark recovered, and no diagnosis was made.

During the years that followed, she would have the occasional dizzy spell, or she’d find herself “tripping over lint” from foot drop. But she attributed it to the flu bug, an earache or perhaps overwork. She wasn’t aware that MS strikes many with a “relapsing/remitting” pattern, and that the five-week hospital stay could have been her first major MS exacerbation.

“Ignorance may be bliss, but it would have been better to have known in the ’90s when the new drug therapies came out,” Ashford Clark said of those many years when the disease may have been attacking her central nervous system.

That “bliss” abruptly ended with the diagnosis, and both Barbara and her husband, Ron Clark, were hit with a cold dose of reality when they were given educational videos on the disease and the drugs that are available to fight it, such as interferon beta products, mitoxantrone and glatiramer acetate, which may slow the progression of the disease.

“We cried as the certainty of what I had was driven home, but then we would laugh at how healthy the people looked on those tapes, like perfect little MS people who looked so healthy and normal, showing you how ‘easy’ it was to stick yourself with needles every day,” Ashford Clark said.

The diagnosis affected others around Ashford Clark, as well. Her five grown children met the news with a myriad of reactions, including anger, sadness and concern.

The staff at Ashford Clark Personnel also was told as soon as the diagnosis was in. Along with their concern for their employer and friend came a determination to pull together and help in any way they could.

On a personal level, the MS diagnosis hit Ashford Clark especially hard.

“I am, by definition, a true ‘Type A’ (person),” said Ashford Clark, a mother of five, grandmother of 12 and great-grandmother of one who started her own business at the age of 51, when many start thinking of retiring. “I had so many irons in the fire and so much going on: work, my family, my grandchildren, and I wanted to be all things to all people.”

With the diagnosis, there was the probability that she’d have to slow down when MS symptoms hit and that she’d have to learn to accept help when it was offered.

Dealing with the disease

While some people with MS go for months or years at a time without an exacerbation of symptoms, Ashford Clark was not so lucky.

“The first year was a nightmare of tests and more tests and one episode after another — back spasms that knocked me to my knees, arm spasms, bouts with vertigo, confusion, falling, excruciating burning pain in my left arm and hand and so much more,” she said.

She began receiving daily injections of Copaxone, a glatiramer acetate, and monthly intravenous doses of Solu-Medrol, a medication that helps the body recover from MS exacerbations.

First diagnosed with relapsing-remitting MS, Ashford Clark said doctors have told her she may be on the brink of secondary progressive MS, in which there is a gradual increase in symptoms.

In 2001, Ashford Clark began using a cane to help her get around, a tool she now calls a “godsend” that enables her to walk on the beach and navigate her way around the Ashford Clark Personnel office as she trains employees and does whatever she can to help out.

“I’ve never been afraid to get in and do whatever needed to be done, anyway. It’s just that I was the main salesperson, and now I’m not able to do that because of the increasing fatigue,” she said. “I now realize that I can’t do all that I did before because the cognitive side of it has given me some bad times, but I compensate by using memory ‘tools’ and e-mails that can’t be misconstrued.”

She also has spent time training her employees on a company procedural manual, something she put together in 1999.

At that time, she had planned to slow down some, enjoy her family and let her staff take over more of the day-to-day operations, so she crafted a plan that had every daily and annual procedure the staffing agency required — from a complete receptionist/administrative manual to all that staffing specialists must do to make their positions a “profit center,” she said.

“It was the best thing I could have done, and I urge all business owners, and employees, to do as well, because exactly one year later I was diagnosed,” she said.

Looking to the future

Now that she has dealt with the diagnosis and is living with the disease, Ashford Clark wants to help others who have been diagnosed or work with someone with MS.

“I have come out with this because I know there are many people out there trying to carry on, business as usual, and perhaps hiding it,” she said, noting that often, people with MS don’t look “sick,” even though they may be fatigued, having balance problems or having problems with their concentration.

“If you haven’t walked in the shoes, you can’t imagine what it is like. ... I haven’t lost my sense of humor but I have changed,” she said. Ashford Clark said she relies more on her husband around the house, has gotten used to telling people she’ll make it to an event “if she can” and has tried to be patient with herself and others.

“I have learned that life really is a series of unmet expectations, and we need to adjust our attitudes accordingly in order to cope with the life as it is for you,” she said.

Related: MS in the workplace — tips for employers

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