Learning to stand Learning to stand (May 10, 2002)

By Diana Reynolds Roome

To the group of women that meets at Shoreline café each month, the windsurfers and marsh birds evoke mixed emotions. These women are young and animated, but most have difficulty balancing and walking and can only dream of windsurfing. Even speaking is an achievement for some.

"I used to come down here to Shoreline to ride bikes with my boys and play baseball," says Michelle Hansen, who has no problem talking though she can no longer get on a bicycle. Her right arm is limp on her lap and she walks with difficulty. "I was healthy as anything, running around doing everything."

Hansen could be speaking for all the women in this group. They all once managed busy lives, careers and families, and had those lives changed in one stroke. Now they seek comradeship, support and sharing of ideas at the Peninsula Stroke Association's Young Women's Group.

"I thought stroke was something that happened to old people," says Hansen, whose stroke occurred when she was four and a half months pregnant with her third child, Jessica. Several other members of the group also suffered strokes during pregnancy or soon afterwards." I didn't know that six weeks after having my second baby I'd be fighting for my life," said Diane Tierney, whose stroke kept her hospitalized for seven weeks.

She was too ill to see her children, and when her husband finally brought them in, she hugged her three-year old son, Joseph, but couldn't say a word to him. The little boy looked at his father and said, "Mommy's angry with me." That, Tierney said, was when she decided "I will learn to speak again."

Deanna Metcalf remembers being taken through the living room on a gurney, unable to utter any sound except a high screech that startled her and her husband. She was 37 and 30 weeks pregnant. Her baby boy, Marcus, was delivered 18 hours later by caesarian section.

Though he was two months premature, he did well and went home. She stayed in the hospital on life support for almost four months more, communicating by blinking her eyes.

"My whole body shut down. I couldn't breathe, speak, or hear properly and I was seeing double," says Metcalf, who now talks up a storm, though much more slowly than she used to. From her wheelchair, she can pick up her baby, change his diapers and give him a bath. "He's perfect," she says.

During pregnancy blood volume increases by 40-50 percent and blood pressure - a prime cause of stroke - tends to go up, though often the cause is not clear. Diabetes, smoking, a high-cholesterol diet and heavy alcohol consumption are proven risk factors, but many strokes happen despite a healthy lifestyle.

The contraceptive pill can also be a hazard for women in some cases. Metcalf and Hansen were both working extremely long hours under heavy stress.

Hidden factors - such as an area of malformed blood vessels (ADM) in the brain - can also increase risk, setting off a hemorrhagic stroke such as Hansen's. In ischemic strokes, which are more common, a blood clot creates an obstruction in the free flow of blood in the brain, causing brain cells to die off.

Whether ischemic (clot) or hemorrhagic (bleeding), the trigger for a stroke is often not understood, but according to the American Stroke Association, more than one-fourth of women who have a stroke in a given year are under the age of 65.

The disease also claims more than twice as many lives as breast cancer. However, strokes are more likely to disable their victims than to cause death, robbing survivors of the lives they knew. A third will need help caring for themselves and 71% will not return to work.

Kathy Akers, a junior high school teacher, suffered a right-side stroke that completely knocked out her ability to speak. She can say "Yes" and "No," often with great emphasis, and can write her answers, but her aphasia is so profound that she is unable to access the words she needs to communicate.

Some people, though not visibly impaired, are left with cognitive deficits - memory problems, or difficulty calculating, organizing or planning - that makes it hard to hold down a job.

"Many people have to get back to work - not just living with a new body, but trying to force it back into the system," says Cynthia McCain, a left-hander who had a left-side stroke three years ago, when her son Alex was six years old. "You know what you want to do, but you're still discovering your capacities."

McCain has returned to work three days a week as administrative assistant at the Peninsula Stroke Association and helps to organize and facilitate the women's group.

Her long-term disability insurance runs out in July, and she worries that there's no system in place for people who have a stroke early in life. She would like to get involved politically, and fight for more money for disability and research funding.

But like many others - especially mothers - dealing with the aftermath of stroke, she is already stretched to her limits and has little time or energy left over for activism. She hopes, however, that the women's group will start to look at these issues.

Creating a support network

At present, the group offers support by sharing ideas, whether about job searches, making cookies (so much more difficult than it used to be), or the subtle cognitive problems that rob people of their self-esteem and confidence.

"I counted on my skills, as you count on your legs being strong - that they'll be there when you stand up," says Leslie Moreland, a CEO whose teenage son found her comatose on the kitchen floor after a stroke.

For awhile she could barely get herself dressed in the morning, let alone remember names of business acquaintances. "You lose a lot of your basics in seconds, and it causes you to question yourself. What if you embarrass yourself, mess up?" asked Moreland.

Just as often, the women share small trials and triumphs and laughter about the absurdity of their situation.

"I used to be a beautician, and a darned good one," says Suzette Keller, who had a stroke when she was 35. "Now I cut my husband's hair. It's crooked, but ..."

"The doctors told me I'd never talk," says Debbi Wener, with a pause between each word. The others murmur their approval, as she is proving them wrong.

Nature walks for well being with Elizabeth Bowden-Smith Hidden Villa, Los Altos Hills www.hiddenvilla.org 949-8650

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