Amy Biviano has entered a race that’s far removed from her Spokane political runs of the past.
These days, Biviano is putting her muscle – and running – into a fight she has battled every day for 26 years. At age 18, she was diagnosed with partial complex epilepsy, causing gelastic seizures, a rare form that awakens her at night.
As an Athletes vs. Epilepsy member, the 44-year-old Biviano plans next week to run the July 28 San Francisco Marathon, not once but twice. She’s among 100 people who at 11 p.m. the night before will take off from the finish line to run the course to its start. Then they’ll join all participants to run it again.
“Yes, to be clear, my hubby thinks I’m nuts for doing this,” said Biviano. “I want to bring attention to epilepsy and the need to fund research.”
Her husband is Andrew Biviano, an attorney and former Spokane County Democratic Party chair. She also was a past chair and aspiring politician. She ran unsuccessfully for Spokane treasurer and also lost in 2012 to state Rep. Matt Shea. She admits her condition caused some anxiety before public presentations.
Both have now stepped back from party leadership. He’s supporting her new goal while running half of the regular marathon.
Amy Biviano became a runner in 2010 to get stronger before a medical procedure. For this double marathon, she has an online fundraiser to raise $5,000 for Epilepsy Foundation research. Epilepsy, a brain disorder that causes seizures, affects about 3.4 million people in the United States.
She’s also dedicating each mile in the 52.4-mile total to a different person living with epilepsy among friends in Spokane and across the U.S. from Athletes vs. Epilepsy. She’ll post their stories on social media.
But there’s another kicker. Biviano plans to complete the grueling distance just eight days before undergoing the first round of brain surgery, to explore precisely where her seizures originate.
She’ll check in Aug. 5 for a week at University of California, San Francisco Medical Center, which has an international specialist in gelastic seizures. There, Biviano also is part of epilepsy studies that will collect brain tissue and another that will do brain mapping.
In August, a medical team will take Biviano off all medications and do intensive video monitoring and filming of her seizures. Her medications normally halt grand mal seizures.
“The right frontal lobe is where they’re looking,” Biviano said.
“Where the seizures are coming from are from deep inside the brain. They’re going to drill 15 spaghetti-noodle-sized holes in around my right temple, just enough to put the electrodes deep in my brain and right frontal lobe.
“The last time I was off meds for testing, I had three grand mals [seizures] in an 11-hour period; it was awful.”
After surgery, Biviano will go home for a month before returning to UCSF in September to decide with specialists whether to remove a “seizure focus,” or to implant a responsive nerve stimulator similar to a cardiac pacemaker.
The stimulator involves embedded electrodes deep in the brain, constantly measuring brain activity.
“When it detects a seizure, it will send an impulse to where the seizure starts with the goal of making seizures shorter,” she said. “That is a treatment, not a cure.
“If they can remove the seizure focus, I could be seizure-free.”
That’s the best scenario with laser surgery. But if the area is large or in two spots, doctors might have to do a craniotomy that removes part of the bone from the skull, exposing the brain.
Surgeries aren’t new to Biviano. She first underwent a craniotomy in 2003, when Seattle doctors thought her seizures originated elsewhere in the brain. “They removed a plum size of my temporal lobe,” she said. Scars and a screw, under her hair, remain.
Another 2011 surgery, which spurred her running, implanted a nerve stimulator for sending electrical impulses to the brain through the vagus nerve. That option didn’t bring relief, so it was turned off in 2014. But her life as a runner kicked in.
A self-described former couch potato, Biviano started slow and soon loved “the sense of power and freedom” that running gave her:
“I felt like a lot of folks with disabilities. I was losing some of my sense of self. I needed the mental health boost.”
She’s since done 24 marathons and seven ultra runs, with distances greater than 30 miles. She runs on weekends. Her family moved from Spokane Valley to the Cliff Cannon area, so she runs weekdays about 8 miles to and from her accountant job at Disability Rights Washington near downtown.
Epilepsy is a spectrum disorder. Biviano said she feels fortunate because she can work.
“Gelastic means I laugh when I have a seizure, and I have additional muscle movements that wake me up, but I wake up laughing,” Biviano said. Only 1% of epilepsy patients have that condition.
“I never sleep well. The reason I can work is my bigger seizures happen at night. Yes, I have ones during the day that are more like a pause. It feels like a brain hiccup.”
Biviano was diagnosed before starting at Yale University. At camp as a Girl Scout counselor, she had her first grand mal seizure.
Recent news regarding the July 6 death of Disney Channel star Cameron Boyce, 20, gave Biviano some pause. He suffered an epileptic seizure in his sleep.
It’s rare, but about 1 in 1,000 people with epilepsy suddenly die each year. Most deaths occur during or after seizures, which can cause people to stop breathing. Doctors call it “sudden unexpected death in epilepsy,” or SUDEP.
Biviano has a higher SUDEP risk as someone with uncontrolled nighttime seizures taking multiple medications, “but I am very diligent about both taking medications and getting to bed, so I’m taking steps to reduce my risk.”
While the 2003 procedure brought some relief, that’s changed in the past year: “I’ve seen a dramatic increase in nighttime seizures and, unfortunately, in quality of life.”
Because of epilepsy, Biviano doesn’t drive:
“You don’t know when your next seizure will be.”
She said epilepsy is one of the least researched disorders. It also impacts family and caregivers, she said: “Andrew has been my rock.”
Sons Aidan, 18, and Alex, 20, also recognize seizure signs and encourage her to rest. On Hoopfest Sunday, she had more than 200 seizures. She has recorded such activity on a seizure-tracking app for another epilepsy study.
With doctors’ clearance to do the double marathon, Biviano hasn’t followed a training plan, other than longer practice runs.
The nighttime course is marked, but traffic isn’t closed. Runners wear a head lamp and reflective vest, and carry a cellphone. She’ll take it slow, six hours that night and just over that for the remaining distance:
“I run because I love to run. I run an average 120 miles a week.”
Whatever her surgery outcome, Biviano plans to keep running.
“Running helps with overall health and feeling more resilient,” she said.
“With conquering something that was hard, I feel I can handle my epilepsy when it gets hard. When I get to mile 20, my mantra goes like, ‘This marathon isn’t the hardest thing I’ve done. I’ve been through brain surgery. I’ve given birth without meds. If I can conquer this, I can conquer anything.’ ”
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