After stroke at 32, young mom's small town pitched in to help

By Diane Daniel, American Heart Association News

Stroke survivor Liz Gilberg. (Photo courtesy of Liz Gilberg)
Stroke survivor Liz Gilberg. (Photo courtesy of Liz Gilberg)

Elizabeth Gilberg recently picked up a few new skills.

At 50, she's learned to knit and is relearning how to quilt. She took lessons in cross-country skiing and tried her hand at beekeeping. Bike riding didn't go so well, but she's game to keep trying.

Like many women whose children have grown, Gilberg, a mother of four, now has more time for herself. The difference is, she wasn't sure she'd live this long.

"I'm so grateful that I'm still here to have all of this joy every day," she said. "I never thought I'd see my kids graduate high school."

Two weeks after giving birth to Grace, her second daughter and fourth child, Gilberg woke up with a terrible headache. That morning in early November, she dropped off her other three children, ages 3 to 7, at their schools.

She called her then-husband, who had just set up practice as a family doctor in their new hometown of Columbia Falls, Montana, to tell him about the headache.

That's all she remembers.

After a few minutes of not being able to reach Gilberg, her husband went home to check on her.

He found the car and house doors open. Gilberg, then 32, was sitting on the floor holding Grace in her right arm. Her left arm hung loose. She was speaking slowly, slurring her words.

He recognized the symptoms of stroke and called 911.

Doctors found that Gilberg had experienced two strokes, one on each side of her brain.

Blood flowing out of her brain had backed up, causing clots in the main vein to her brain. The condition is called dural sinus thrombosis. Usually, the cause is related to an increased tendency to clot, which can occur with pregnancy.

She was flown to a hospital in Portland, Oregon, for a then-experimental procedure. Clot-busting medication was delivered directly to the clots via a scope through her groin. It worked.

Still, the stroke caused damage.

Gilberg initially was paralyzed on her left side and had vision problems. For two months, she also was delusional and paranoid. She didn't remember giving birth.

She stayed in the hospital for two months, relearning how to walk, talk, eat and read. Her parents and younger sister took turns staying with her, while her in-laws helped take care of the four children. Townspeople cooked and delivered meals for several months.

Gilberg went home in time for Christmas but still faced several more months of outpatient rehab. Finally, after more than six months, she was able to return to driving and being a mother and wife.

However, things had changed. Her executive functioning skills – such as planning, working memory, time management and flexible thinking – had deteriorated.

Folks in Columbia Falls gave her the help she needed.

If she couldn't find her car in a parking lot, store employees would help. If there was an early-release day at school, someone in the office would call ahead to remind her.

In the case of dental appointments, the receptionist would always call 20 minutes ahead of any appointment so it wouldn't slip through the cracks.

"Just yesterday, I got a reminder about a form I was supposed to fill out to help with my daughter's senior party," she said. "I'm down to volunteer for everything, but I need help figuring out the logistics of it all."

Gilberg, who remarried in 2016, jokes that it's fortunate her husband, Michael, is an accountant. "I really can't add or subtract," she said.

Liz Gilberg (right) with her husband, Michael. (Photo courtesy of Liz Gilberg)
Liz Gilberg (right) with her husband, Michael. (Photo courtesy of Liz Gilberg)

For a recent trip to Germany with her elder daughter, Gilberg – who majored in German in college and speaks the language – relied on German friends to plan the trip.

"There is no shame in saying, 'I can't do this alone,'" Gilberg said. "I think that's one of the things that's allowed me to come as far as I have. Also, I have hugely simplified what I can deal with and handle at a certain time."

She also reaches out to others who need help, especially stroke survivors.

"If I could have seen someone my age who got better, that would have helped my recovery," she said. "I've been to where I can't talk and I can't feed myself, so to see where I am now, maybe that can give someone hope."

Victoria Rutherford, Gilberg's younger sister, left her teaching job for half a year to help after the stroke.

"I didn't think she would be where she is now," Rutherford said. "She just continues to improve. She's also a much deeper human and relates to people who struggle on a much deeper level."

After nearly 20 years, Gilberg will soon leave Columbia Falls. As difficult as it is for her to leave her friends and supportive community, the move is best for her health.

Several years ago, Gilberg was diagnosed with lupus, a disease of the immune system that can be associated with a high chance of blood clots. Warmer weather in Utah will lessen flare-ups.

"It's hard to imagine a better place to have lived in through all this," she said. "But I have a wonderful partner and some brain space to continue to expand what I've got going on here. I feel so much excitement for my life and the future."

Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.

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