Amy Buford will occasionally look at a picture of her dad helping her walk.
It’s not a baby picture, as you might think, though her dad, Bob, raised her by himself since she was a toddler. He has always been her rock, and that is reflected in the five-year-old picture, taken when Amy was 26.
“I like this picture of my dad holding me up because it reminds me how far I’ve come,” said Amy, now 31.
At 26, Amy felt she had most of life’s questions answered. She was five years into a career she loved, helping at-risk preschoolers as a special education teacher. She volunteered as a court-appointed advocate for children while completing her master’s degree. Nights and weekends, she’d play club volleyball — very competitively, too. And she was engaged to be married.
“She had the whole world by the tail,” Bob said.
But all that changed when Amy had a massive stroke, leaving her with a transformed reality. She had new questions to answer. Would she ever walk again? Would she be able to teach again? Could she ever be a mom?
“It was terrifying,” Amy said. “I wondered what I was going to do and how I was going to continue with my life because at the time, a lot of people were telling me what I could or couldn’t do. I didn’t like that. I wanted to prove if I could do something or not, and it wasn’t always easy.”
Strokes in young adults are rare, but on the rise. So, health experts are working to boost awareness of them. Amy’s doctors first had to save her life. Then, they would learn more about the likely cause of her stroke.
Three days before Christmas
On Dec. 22, 2013, a blood clot lodged in Amy’s middle cerebral artery, one of the major arteries that supplies blood to the brain. A medic in the military, Amy’s then-fiancé immediately recognized she was having a stroke and called 911.
Know the signs, think F.A.S.T.
Uneven or drooping smile.
One arm is weak.
Slurred or jumbled speech.
TIME TO A CALL
Call 911 if you suspect any symptoms.]
Paramedics rushed Amy to UCHealth Poudre Valley Hospital in Fort Collins, where a CT scan confirmed the clot. Doctors gave her and tPA, a clot-busting drug, and then sent her via helicopter to UCHealth University of Colorado Hospital.
Bob was in Denver when he heard the news. He raced to northern Colorado, then turned around when he learned his daughter’s stroke was so severe that she needed to go to Aurora.
While Poudre Valley Hospital is a certified Primary Stroke Center able to provide stroke care, such as tPA, University of Colorado Hospital is a Comprehensive Stroke Center, where doctors can provide more complex services.
Bob made it to the hospital just as the helicopter landed. Amy’s best friend, Valerie, joined him.
“One of the nurses came and grabbed us,” Bob said. “She told me to run and follow her. I was there when they brought Amy down from the rooftop. It was pretty grim. We were terrified she wouldn’t make it through the night.
“And that’s what started the long process.”
Working against the odds
A brain scan showed that the stroke had affected two-thirds of Amy’s right hemisphere, said Amy’s neurologist, Dr. Sharon Poisson, medical co-director of the certified Comprehensive Stroke Center and an associate professor of neurology at the University of Colorado School of Medicine.
Bob credits Poisson and her team with saving his daughter’s life — twice.
The extensive damage caused Amy’s brain to swell significantly, so doctors performed a hemicraniectomy. With a section of her skull removed, her brain swelling didn’t put fatal pressure on other areas of her brain. (Doctors later reattach the skull once swelling recedes, which in Amy’s case was several months later.)
But Amy’s brain began hemorrhaging again.
“They recognized what was going on and saved her life again,” Bob said. “I have nothing but praise and admiration for those people.”
Battling the brain
With the right side of Amy’s brain so severely damaged, the left side of her body was completely paralyzed.
“I remember them asking me to move my left arm,” Amy said. “I reached over with my right arm and picked it up. They wanted to know if I could actually move my arm. I thought they just wanted it out of the way.”
Amy’s stroke left her with what’s called left-sided neglect, which is more than just not being able to use one side of the body. Amy’s brain literally didn’t acknowledge she had a left side. People with one-side neglect may leave food on half their plate or put on only one glove or shoe. Amy’s doctors, friends and family had to cue her to look over to the left in an effort to improve her impairment.
“My dad could be sitting next to me and I wouldn’t know it unless he was getting my attention in a more direct manner,” she explained.
The stroke also affected her memory. She can recall some of the period of time she spent at the hospital, but mostly, her memories since the stroke are distinguished by seasons or big events, not actual dates.
She remembers New Year’s Eve, as her friends decorated her room for her favorite holiday. And she remembers Valerie by her side many of those days, bringing a small sense of normalcy to her life.
“She’d take me on wheelchair excursions, and we’d just laugh and laugh about all the random things we’d discover in the hallways,” Amy said. “She often stayed the night. She was there through it all.”
After about a month, Amy was able to leave the hospital and begin rehabilitation. It was agonizing.
Don’t tell me what I can or cannot do
“I had this new normal, but there is nothing normal about being 26 and in a wheelchair when I was used to being active,” Amy said.
Still, she refused to give up. At one point, caregivers told her she might never walk again. It infuriated her, and she made that clear to her therapists.
“Then don’t work with me if you’re not going to get me where I was,” she told them. “I’m a special education teacher. Don’t tell me I can’t.”
Poisson said Amy’s drive was inspiring. Amy said it was Poisson who gave her strength.
“Young adults with strokes are a different population than most,” Poisson said. “They are not only dealing with the deficits of stroke, but yesterday they were healthy 26-year-olds. It’s a sudden realization that they’re a different person now. It changes the way people define themselves.”
Who I am now
Being able to use her left side was Amy’s biggest challenge, but she was determined to walk out of rehab — and by spring, she succeeded.
“She had a cane and my arm, but she walked through all the nurses, PTs and OTs — all the people who helped her through rehab lined the corridor to the car. They were all crying and clapping, and we went home,” Amy’s dad said.
“That’s where we’ve been since,” he said. “I live with Amy now, and she’s probably my best friend.”
Amy struggles with daily tasks, and having her father nearby helps her manage. She wears an ankle-foot orthosis (AFO), a brace that helps her pick up her left foot to walk, as she can’t wiggle those toes. Her left arm also has limited range of motion, and she’s able to grasp things, but struggles to let go.
“Here I was, 26 and asking my dad to fasten my bra,” she said, chuckling. “It was my best girlfriends who told me about front (bra) closures — now that was a game-changer.”
Amy said she spent a lot of time Googling self-care tips. She is unable to do what is basic for most young females — curling her hair or putting it in a ponytail.
“I just had to stop worrying about that stuff,” Amy said. “This is who I am now.”
She focused more on functionality than glamour.
“I’ll never wear stilettos … and shoe shopping is a pain,” she explained. “I need to bring my dad because of the management of fitting the shoe and the brace.”
She does grieve about her limitations. Even small things, like seeing another young women wearing flip-flops, can make her angry. She gets frustrated when she needs to multitask and can’t. She also holds small celebrations like she did recently when she found sandals that she could walk in.
“It’s not only physical barriers I have to break down, but the mental barriers too,” she said. “There are moments when I’m walking into the store and the curb looks funny to me. I freeze and can’t get up the curb.”
She finds inspiration in a poster that shows a horse tied to a small plastic chair. It says: “Sometimes the thing that is holding you back is all in your head.’’
Her dad, though, is in awe of her strength. Amy returned to teaching high-risk preschool children the fall after her stroke.
Lessons from her stroke give her empathy for her students.
“I can only focus on one thing at a time now. Sometimes, I have to make myself take a deep breath and slow down. I know that I’ll get there, but if I want that quality of work, I need to take the time to do it,” Amy explained. “I see my students get frustrated in that same way. Maybe they’re challenged by a puzzle. I have them take a deep breath — tell them to walk away from it for a minute and come back. I’ve been in that position where a puzzle has actually been hard for me.”
Strokes in young adults
At the University of Colorado School of Medicine, Poisson is studying strokes in young adults. Although she’s seen a decrease in overall strokes over the past two decades, there has been an increase in strokes for those in their 20s to 40s.
One possible explanation is that risk factors such as high blood pressure, obesity and diabetes are becoming more prevalent among young adults and, perhaps, not being addressed early enough.
However, that was not the case with Amy. She didn’t have those risk factors but she had Patent foramen ovale, or PFO, commonly known as a persistent “hole” in her heart.
Patent foramen ovale, or PFO
When in the womb, every fetus has a foramen ovale, which is an open flap in the wall between the left and right atria of the heart. This opening allows most blood to flow from the right to the left atrium rather than to the lungs. When a baby is born and takes a first big breath, more blood immediately flows to the lung, and the “flap valve” of the foramen ovale closes. Within a few years it seals completely and permanently in most people.
But in 25 percent of the population, the flap doesn’t fuse shut and this opening between the right and left atrium may intermittently come and go, called a patent foramen ovale (PFO). For the vast majority of those people, there are health concerns related to their PFO.
Researchers like Dr. John Carroll, an interventional cardiologist with UCH and professor at CU School of Medicine, have wondered if there is a connection between PFO and strokes, as about 50-60% of young-to-middle-age people without an obvious cause for their stroke were found to have a PFO, he said.
Potentially, a PFO could allow for a small blood clot, originating in a vein, to pass into the arteries that lead to the brain. In most people, such a clot would go through the huge network of branching arteries in the lungs where it would be filtered out with no damage. But even a small clot of two to three millimeters could cross over a PFO and decrease blood flow to the brain, causing a stroke, Carroll said.
A study to determine if indeed this was the case is challenging to design, he added. But one major clinical research study led by Carroll yielded a clear determination that closing the PFO with an inserted medical device was more effective than medications to prevent a second stroke.
Once Amy was healthy enough, Carroll performed a transcatheter PFO closure procedure on Amy.
Five years later
Amy continues to attend physical and occupational therapy one to two times a week. And she’s trying new things, instead of focusing on limitations. She said she uses her stroke as an excuse to “be a bit selfish.”
“I feel like I owe it to myself to reach my goals and follow the dreams I had before my stroke,” she said. “I’m focusing on me.”
She has joined a spin class and hopes to try a new exercise class every so often. Pilates is next. She has started hiking again and hasn’t given up on teaching. She works hard every day to gain more independence.
“I have to look at things for my own personal growth — to prove to myself that I can still be an adult and capable of doing big things,” she said.
Her dad couldn’t be more proud and his love is evident in his aspirations for her.
“She fulfills her own destiny every day,” Bob said. “I’d love to see her have a life that is independent of me. At 32 (which she’ll turn on June 3), she absolutely deserves that. She’s just an amazing person. She sets goals and accomplishes them. And if she fails, she sets a more achievable goal, accomplishes that and then sets a higher goal again. She’s a pretty amazing kid.”
Amy said she couldn’t have done it without her father.
“If it weren’t for him, I wouldn’t be where I am now,” she said. “My dad is my rock.”
She has a photograph to prove it.