Experience informs mother/daughter book on supporting stroke survivors
“I have to stay hopeful and find the strength that we both need to have to carry us through the inevitable difficulties. I am proud of what we have overcome and accomplished, but it is never ending, sometimes overwhelming and exhausting.”
— Nikki Juvan
MIDDLEBURY — Nikki Juvan’s world turned upside down one fateful day in October 2018.
That’s when her husband, Trent Campbell, experienced the first of three strokes that suddenly robbed him of his mobility and, by extension, his independence.
The past four-and-a-half years have brought multiple hospital stays, thousands of hours of rehabilitation, countless physician consults and incalculable hardship — for the patient and his family.
Through perseverance and the help of others, Trent — the Independent’s former longtime staff photographer — now gets around with a walker, and his mind thankfully remains keen.
It has, by Juvan’s account, been a long and bumpy road, one they’ve had to travel with no GPS.
“We’ve been so blessed with support from the community, therapists and doctors,” Juvan said. “But some of the things they don’t tell you about. When you’re in it, it’s a completely new experience. You’re getting so much information thrown at you. Doctors and nurses are changing. Then you’re sent home (or to rehab), and it’s like you lose that support system.”
Nikki’s daughter, Hannah Roque, saw the toll it was taking on her mom and her stepdad. And while she couldn’t retroactively lighten the load for mom, she decided to make that effort for others who enter the sometimes-tragic fraternity of stroke survivors. So she and her mom have partnered on a new booklet called “Stroke Stories,” a handy, 20-page publication that offers links to important healthcare resources for stroke survivors and their families, as well as poignant stories from patients and caregivers who continue to navigate the road to recovery.
The first 200 copies of “Stroke Stories” were published in January. The authors will work with University of Vermont Health Network to give the booklet to each stroke patient and their family that moves through the state’s hospital system. Meanwhile, several booklets have been assigned to University of Vermont Medical Center (UVMMC), Porter Hospital and Project Independence, an adult daycare center where Campbell — and some other stroke survivors — are enrolled.
“It creates a resource I know my mom could have used when Trent was in the hospital,” Roque said. “Being a part of making a resource we would have needed and wanted, making something that can hopefully bring comfort and peace to other stroke survivors and their caregivers as they’re going through this, was really wonderful.”
The mother-daughter team first reached out to Becky Louko, coordinator of UVMMC’s stroke support group, for the names of some stroke survivors to interview. Those who gave consent received a handful of questions devised by Roque and Juvan.
Among them: How have you found meaning in your life since your stroke? Do you have any advice for other people going through this?
“The vast majority of the stories that we collected were from people who were eager to share,” Roque said. “A couple people did have to be coaxed a little, but when we sat down to explain what the mission was — to have (the booklet) be a comfort to stroke survivors and their families — they were willing to share their stories.”
The mother/daughter team conducted interviews virtually, by phone, and received some responses in writing. They turned all the feedback into wonderful profile stories, some of them accompanied by photos.
It helped that the booklet compilers were good writers. Juvan is an educator, while Roque earned degrees in English and Secondary Education from St. Michael’s College, where she currently works as an admissions counselor.
“It was fun, but it was difficult,” Roque acknowledged. “I really wanted to do justice to the story that was being told. So we used (direct) quotes and just tried to frame the narrative.”
Roque was pleased to also get the perspective of caregivers, like her mom.
She was particularly struck by the resiliency of the booklet’s contributors.
“It was neat to hear all the amazing things people are doing, how much hope they all have… to make their lives meaningful and get back to the ‘new normal’ after their stroke,” Roque said.
WHO’S IN THE BOOKLET
Among the profiles in “Stroke Stories”:
• Tom, who suffered an ischemic stroke in his left carotid artery while at work one day in 2013. He was rushed to UVMMC and sustained a second stroke that put him in the Intensive Care Unit. He convalesced in the hospital and during extensive rehab, which included speech and occupational therapies.
“The oddest thing for me was waking up in the morning and having no thoughts,” he recalled.
Nine years later, Tom is normalizing his speech pattern and has no paralysis.
His conclusion: “Life goes on, man.”
• Rachel McKnight’s “reward” for successfully battling leukemia in 2011 was a stroke just seven months later. She was sitting at her computer when she experienced a hemorrhagic stroke that caused bleeding into the left side of her brain. McKnight spent a month in the hospital, followed by inpatient rehab.
When she arrived at rehab, she said, “I could not talk, could not get in or out of bed or walk. I had to get from bed to wheelchair using a lift. With help from family and her medical team, McKnight is active again, biking, skiing and kayaking.
“Never give up,” she advises other stroke survivors. “Never stop looking for the next thing that might improve your condition of life.”
• Juvan offers a candid account of how Trent’s stroke has affected the entire family. She called it a “difficult road full of ups and downs. It was one we never could have imagined being our reality after only seven short years of marriage.”
She speaks of the massive responsibilities she’s been compelled to absorb as a spouse and super-attentive caregiver.
“I have rejoiced that he made it through the strokes and also grieved that our marriage will never be the same,” she offers.
“I have to stay hopeful and find the strength that we both need to have to carry us through the inevitable difficulties,” Juvan adds. “I am proud of what we have overcome and accomplished, but it is never ending, sometimes overwhelming and exhausting.”
After more than four years of ups and downs, Juvan has taken (and aced) a veritable crash course in neuroscience, counseling and physical therapy. That knowledge informed her contributions to “Stroke Stories.”
“I have mastered enough medical terminology that a few doctors have mistaken me as a medical professional,” she writes in her own “Stroke Stories” essay. “In many ways, I feel like a different person since (her husband’s first stroke).”
“I see the world through different eyes now, and I know that to collect these stories of stroke survivors, I may just be able to give us all hope,” Juvan said.
She advises other caregivers to take copious notes during physician meetings, reach out to community organizations for support, keep track of the medical professionals you like and trust.
“Ask questions over and over until you understand the terminology and the process,” Juvan stressed. “Try to find the good in this journey and be grateful for the little successes.
Word of “Stroke Stories” will spread even further this April, when Roque competes for Miss Vermont at the annual pageant held this year in Stowe. Each contestant must present a community service project, and “Stroke Stories” more than fits the bill for Roque, the current “Miss Route 7.”
Trent Campbell is understandably proud of his spouse and stepdaughter. Their care for him has blossomed into advocacy for the hundreds of Vermonters who suffer strokes each year.
“Nikki said to me, ‘You’re here for a reason,’ and then she realized she’s here for a reason, too — to educate people about strokes,” he said. “(The booklet) has turned out great and I’m very proud of them both.”
The patient stories are powerful, but Juvan and Roque are also proud of the four pages of links in their booklet to state and national organizations offering studies, services, rehab regimens and more to stroke survivors.
Roque said she believes one of the most important additions to “Stroke Stories” is a simple-but-critical acronym: BEFAST. It stands for Balance, Eyes, Face, Arms, Speech and Time. Sudden changes in any of these things can provide the telltale signs of a stroke, and “time” is critical in getting help.
Putting together “Stroke Stories” took a lot of time and effort from people who didn’t have a lot of spare time. But if it saves just one person’s life or puts just one caregiver’s mind at ease, it will have been well worth it, according to Juvan.
“I’m a firm believer that good can come from anything” she said. “It’s a hard road, but we hope to make it a little easier. It’s also a project of love and gratitude for all the amazing people who have helped and supported us the past several years.”
Look for copies of “Stroke Stories” at local health care establishments. The booklet will soon be published online on the UVMMC stroke care website.
Reporter John Flowers is at [email protected].
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