More MS news articles for Oct 2001

Hitting a nerve - MS patients relate to 'West Wing' dilemma

http://fl.mlive.com/news/index.ssf?/news/stories/20011010fmultiplesclerosis.frm

Wednesday, October 10, 2001
By Carol Azizian
JOURNAL STAFF WRITER

Jackie Smith, Sue Hart and Joni McKechnie understand why the fictional president on NBC's hit show, "The West Wing," would conceal his illness from most of his staff and the American people.

Like TV's Josiah Bartlet, all three women are coping with multiple sclerosis while holding down jobs.

"I don't think the president should have to tell American (voters) that he has MS - not unless it's hindering his performance," said Hart, a Flushing resident and part-time employee of the Disability Network.

"If it was hindering his performance, I would think he wouldn't run," she added. Since Bartlet has the relapsing/remitting course of MS, he should be able to do the job, she said. (Relapsing/remitting is characterized by partial or total recovery after attacks or exacerbations. It's the most common form of MS.)

Besides, Hart said, "look at Vice President Dick Cheney. He's got big-time heart problems and he's in a really stressful job. And, that's not fiction."

Last season, the show tackled this issue: What happens when the leader of a major world power covers up the fact that he has a potentially debilitating disease?

An avid fan of the show, Smith of Flint Township said she understands why he hid the illness because even "his own staff is questioning his ability to be a competent decision-maker. If he had diabetes, would they be questioning his ability to be a leader? Ronald Reagan had colon cancer and he was old, which affected his energy level."

Some people may be concerned that the disease will affect his cognitive ability, she said. "But it doesn't have that effect on everybody with MS."

Someone with MS could be the president of the United States, despite the extreme pressure in the job, Smith said. Stress affects the immune system and that's what exacerbates the disease, she explained. "It all comes down to how you handle stress.

"You have to look at each person as an individual, not as the disease," said Smith, who serves on the service council of the Greater Flint Area chapter of the National MS Society.

A technical recruiter, she informed her employer, Kelly Services of Mt. Morris Township, because "we're almost like a little family and we know a whole lot of personal information about each other."

Smith, who had symptoms when she was in her 20s, wasn't diagnosed until years later, in 1989.

Her employer was "very understanding and supportive," she said.

Twice a year, she takes up to two weeks off because she feels extremely fatigued (one of the symptoms), she said. "Occasionally, my vision is blurry and the muscles in my left leg get weak. I also experience balance problems. But my brain still works."

Carol Hunt, recruiting manager at Kelly Services, said Smith is "one of my best recruiters. She has a good rapport with customers and employees.

"She knows her limitations," Hunt added. "When she gets kicked with a bout, she can be out three days to two weeks. But you wouldn't even know she has it."

Hart, a former postal worker, said her employer wasn't as understanding.

Like Smith, she also had symptoms - double vision, numbness in her left hand - when she was in her early 20s.

Hart informed her employer in 1993, soon after she was diagnosed with MS. "She (her manager) immediately said I should apply for disability retirement (benefits)," she recalled.

At first, Hart obtained a doctor's note saying that she could only stand for an hour at a time. "If I stood for two hours, my legs went numb," she said.

"As time went on, I realized those restrictions weren't enough. I still was getting really tired."

She was moved first to another post office branch, then to the main office, where she had a desk job.

After someone witnessed her tripping and falling in the hallway, she received a letter from the post office saying she could no longer work there, Hart said. She was released in early 1994, months after the post office had sent her for a physical examination.

For the next five years, Hart stayed home with her young children as her disease progressed. "I assumed I couldn't work," she said.

Meanwhile, she began volunteering at the Disability Network. She also became the advocacy chairperson of the Flint chapter of the National MS Society in 1997.

"I realized that I was really interested in (being an advocate)," she said.

For the past two years, Hart's been working part time as a housing advocate for the Disability Network.

McKechnie, a Davison resident, has been working at the University of Michigan-Flint for 22 years. When she told her employer that she was diagnosed with MS in 1990, they were supportive, she said.

"I was a little hesitant to say anything right away. I waited a few months," she admitted. "But the university has been very accommodating. They ordered computer equipment to enlarge and enhance the type or images (10 years ago)," she said. "They made sure my office was barrier-free."

About three years ago, McKechnie switched jobs - from administrative assistant in the financial aid department to administrative assistant in university and alumni relations.

Her previous job was "a little too strenuous," she admitted. "I was helping students in the front office and running back and forth to get files. I was getting fatigued and dragging my leg. I had double vision a couple of times."

McKechnie, who has the relapsing/remitting course of MS, would use an electric scooter to travel from building to building. But now she doesn't need it because her job isn't as physically demanding.

All three women receive medication to slow the progress of their disease.

Like the other two women, McKechnie has confidence that Bartlet will be able to carry out his presidential duties on "The West Wing."

"He has a lot of good people around him," she said. "It's (MS), not a death sentence."

A self-help group sponsored by the Flint chapter of the National MS Society meets at 6:30 p.m. the first Tuesday of each month (except July and August) at First Presbyterian Church 746 S. Saginaw St.. Details are available from Kay Churchill, (810) 653-7582.

Carol Azizian covers arts, entertainment and features. She can be reached at (810) 766-6245 or cazizian@flintjournal.com.
 

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