It was August 9, 2015, and Taylor Van Netta and her fiance Tom Brown were enjoying a Sunday morning walk at Freedom Park in Naples.
A casual runner, her mind immediately went to “dehydration” when she was suddenly slammed with a horrible headache after completing five miles. It was so intense that she and Tom decided to head to his place just down the road.
By the time they reached the car, however, Tom was very concerned. Taylor was attempting to explain how she felt, but her words were slurred and she couldn’t remember how to buckle the seat belt. When they arrived at his place moments later, Taylor stumbled and fell into the bushes.
She was paralyzed.
Tom immediately called 911 and the couple was rushed to NCH Baker Hospital Downtown, only moments away.
Here, the 23 year old was told the unthinkable – she was having a stroke.
“It happened so quickly”
“It was all such a shock. It happened so quickly, from the headache to arriving at the hospital took less than 15 minutes,” Taylor said. “I considered myself a healthy person. I was 23, exercised, ate well, took care of myself, but that didn’t matter. I was having a stroke.”
Later that day, Taylor, Tom, and her mother and grandparents learned why. Taylor was diagnosed with a hereditary disease called Antiphospholipid Syndrome that had caused a blood clot in her brain – one that she had lived with her entire life.
Adopted as a child, she and her family were unaware of the medical condition which is “really rare, except that it’s more common among young stroke survivors,” Taylor explained. “What I know now is that we need to develop a test that will be standard for every newborn so that they can be placed on blood thinners to prevent the stroke from ever happening.”
Unfortunately, the cost of not knowing about her condition was extensive and included a decompressive craniotomy, where a portion of the right side of Taylor’s skull was removed and placed temporarily into her abdomen to keep it viable while doctors waited for the swelling in her brain to go down.
It also left her with severe vision problems (she’s waiting for additional eye improvement so she can get her driver’s license back) and limited use of her left hand and leg. “I was fortunate it wasn’t worse – I didn’t experience any lasting cognitive effects or speech impediments,” Taylor said.
Still, “fortunate” requires a lot of work. She remained at NCH for 38 days before transferring to a Lee Health rehabilitation center. “When I arrived at rehab, I was able to wheel myself to the bathroom and get in and out of bed myself, but I couldn’t walk.”
Fighting to walk again
Thirty days in rehab provided her the foundation and by September 2015, Taylor had already proved one doctor wrong – she was up and walking.
“Being told I would be in a wheelchair for the rest of my life motivated me. I needed to know what I could do. Seeing others in therapy going through something very similar and watching their progression – that also helped. So does the support I receive from other young people online who are survivors. Of course, the love and support of Tom, my mom, and grandparents who were constantly by my side and continue to support me as I face new challenges.”
Over time, she developed her own home-therapy routine that she does from 8 a.m. to 4 p.m., daily, based on a weekly session with her private therapist.
She also participates in a research study at FGCU that explores the use of virtual reality software with treadmill physical therapy to determine “whether treadmills really help or if it’s more efficient to do real-world walking,” she said.
Taylor also challenged the FGCU Bioengineering team to help her prepare for the Lee County Heart Walk in December 2016 by developing a virtual walk route for her to practice on the treadmill.
Not only did she complete 2.5 miles of the 3.1 mile walk, she shared her story with the more than 6,000 participants at the event and let the American Heart Association staff know that she was committed to participating in the Estero Heart Walk on Saturday, February 18. “I want to complete the full 3.1 miles. When I decided to par
ticipate in the Lee Walk, I was able to do a half mile,” explains Taylor. “I did 2.5 with an incline and I fully expect to complete the 3.1 mile event in Estero.”
While Taylor is slower physically than she was before the stroke, she’s “grateful. This stroke put my life on track. I’m more focused now and I can use this experience to help others – to show survivors of all ages that if I can do it, so can they.”
What’s next on her agenda? Staying healthy by keeping up with her medication (blood thinners
to prevent another stroke) and therapy, finishing her last two classes at FGCU so that she can graduate with her finance degree in the spring, and that small matter of getting married.
In the meantime, she’s raising awareness about the signs and symptoms of stroke. “I hope this helps! I feel like if there’s definitely one thing I want to get out to younger people, it’s to know the FAST signs I learned in the hospital,” she said.
FAST is an acronym for the crucial warning signs of stroke:
FACE: drooping, weakness, numbness
ARMS: can’t raise/use them equally (numbness, weakness)
SPEECH: trouble speaking, slurring words, confusion
TIME: It’s crucial to respond quickly by calling 911.