Madeline Mudd, Abby Anderson and Molly Ogden are like any group of young women, going to coffeehouses, having sleepovers, texting — and discussing movies, pets and the future beyond their upcoming graduations.
“Just being teenage girls,” said Mudd, 18, of Parkville.
But this group of teens first bonded in hospitals and rehabilitation centers, and their conversations also include swapping ideas for improving their walking or overcoming sleep disturbances. All three have suffered strokes, neurological afflictions that typically strike people four times their age.
They are statistical anomalies, and anomalies can get lonely.
“Until my recovery, I didn’t realize what had happened to me, and I didn’t realize there were other stroke survivor girls out there,” said Mudd, whose stroke in 2013 was caused by a brain aneurysm that left her physically intact but with short-term memory problems. “It was really good to have girls to relate to.”
Finding people to relate to became easier when a young stroke victim created a website (www.nopw.org), along with a week of events meant to raise awareness of the young survivors’ struggles.
The event’s playful name — National Orange Popsicle Week — was inspired by stroke victim Amy Wooddell of Overland Park requesting the frozen treat upon regaining the power of speech during her recovery at the age of 24. The site, which draws both young men and women, and the weeklong event soon followed.
Finding such connections were essential to Anderson and Ogden, who were affected even more than Mudd. Their strokes resulted in their being, to some degree, mirror reflections. Anderson’s stroke, at age 14 in 2011, left her with limited mobility on the left side of her body, while Ogden’s stroke, at age 16 in 2012, left her with weakness on her right side. Because of the braces they use on their affected legs to walk, they often end up splitting a pair of shoes.
“I think they understand each other,” said Ogden’s mother, Alison Ogden, of Lawrence. “It’s important because unfortunately, a lot of relationships change because of (a stroke), and it’s good to create new ones.”
Strokes are by no means limited to the elderly; the Centers for Disease Control and Prevention estimates that 34 percent of all hospitalizations for strokes involve people younger than 65. But unlike older patients who can find support groups full of their peers, young stroke survivors are often in the minority and feel out of place.
Kathy Anderson, Abby Anderson’s mother, said she once took her daughter to a day event for stroke survivors and found that the next youngest person was 68. She said that while many of the patients were grandparents and doted on her daughter, they didn’t help her much.
“They were so much older, and they were going through so many different things,” said Kathy Anderson, who lives in Olathe. “A 14-year-old teenager in high school could not relate to people who were so much older.”
Wooddell started the Orange Popsicle organization in Overland Park to deal with the isolation many young stroke survivors feel. National Orange Popsicle Week technically started in 2011. In 2012, after she and her husband, Jonny Wooddell, met Alison Wilson, another young Kansas City-area woman recovering from a stroke, and they decided they needed to create a group to spread the word.
“We were talking and we said, ‘If there’s two of us, there’s got to be more of us; we need to find more people,’” Amy Wooddell said. “Somehow we came up with the idea of how about we spread awareness (about young stroke survivors), but also spread a community because they didn’t know what happened to her. They didn’t know what happened to me originally. Most people don’t think it is going to happen in young people.”
On the website, survivors around the country can post their stories.
This year’s Orange Popsicle Week includes an auto show on May 9 at Bass Pro Shops in Olathe, the J.C. Nichols Fountain on the Country Club Plaza turning orange on May 22 and a wrap party on May 23 at Homer’s Coffee House in Overland Park.
The group essentially has three goals: ensure people consider stroke in medical emergencies involving young people, help organizations that work with young stroke patients and create a larger community for young stroke survivors.
Stroke awareness is a key concern because strokes cause more damage the longer they go untreated — a real danger if family members or medical personnel aren’t looking for the signs. Wooddell believes she was saved because she had her stroke while with her mother, who recognized the symptoms because of family history and urged emergency room physicians to give her the proper treatment.
“If I’d been with Jonny, I don’t know if they would have caught it in time,” she said. “So it’s important to us that we let people know to watch out (for stroke symptoms), whether it’s your mom or your grandma or your spouse or your kids or co-workers.”
Some members of the group hope increasing awareness of young stroke survivors also will lead to new techniques for stroke therapy.
Chris Wilson, Alison Wilson’s husband, said her stroke was much more severe, and she is still unable to walk or talk. She has spent a fair amount of time in nursing homes and long-term care, and much of the rehabilitation she has been through is geared toward those in their 70s or 80s.
“The approach to recovery I feel is currently geared toward people who don’t have the rest of their lives in front of them,” said Chris Wilson, who moved with his wife to Springfield, Mo., earlier this year.
Kathy Anderson agreed that stroke survivors like her daughter need essential life skills because of their age.
“My daughter hasn’t driven, she hasn’t finished school, she hasn’t started a career, she hasn’t lived on her own,” she said. “There are things that she needed help with that you wouldn’t think the typical stroke victim needs assistance with.”
As part of its fundraising, the group each year selects a single nonprofit to receive all of the money raised during the May events. In its first year, National Orange Popsicle Week raised $5,000 for the American Stroke Association.
Last year, it raised $4,000 for the Falling Forward Foundation, a Lawrence-based charity that helps people with traumatic brain injuries, spinal cord injuries or strokes with their therapy. It has chosen Falling Forward as the recipient again this year.
Sam Porritt started the foundation in 2013 after recovering from a spinal cord injury that originally left him paralyzed from the waist down. He said he can now walk with the aid of braces and a cane because his insurance didn’t limit his rehabilitation visits. But many of his fellow patients were not as lucky and were sent home only partially recovered after exhausting the 20 or 30 days allowed under their insurance.
“When I went home, I got my life back,” Porritt said. “After witnessing this and seeing what a negative impact these therapy caps have on people’s lives, I said, ‘I want to do something about it.’”
Falling Forward provides grants to three rehabilitation centers, located in Kansas City, Lawrence and Denver. Therapists at those facilities can extend patients’ therapy visits.
So far, Falling Forward has helped extend the therapy of 23 patients, including seven recovering from strokes.
Connecting young stroke survivors is probably the thing closest to the Wooddells’ hearts, and the group’s mission.
Within weeks of Ogden being admitted to the University of Kansas Hospital for her stroke, the Wooddells visited her. Ogden, in turn, visited Mudd when she was admitted to KU Hospital nine months later.
Marcy Mudd, Madeline Mudd’s mother, said the group’s support has been “life-changing” for both her daughter and herself, as not only does her daughter have a group of friends but she herself has fellow parents dealing with the challenges of caring for a teen after a stroke.
“We call ourselves the ‘stroke moms,’” Marcy Mudd said, laughing. “We get together and we talk and it’s ‘Me, too,’ ‘Me too,’ ‘Me, too.’ The feeling it brought us was that we are a community, and you aren’t alone anymore.”
For example, Madeline Mudd is a competitive ice skater. Wooddell, a trained dancer before her stroke, gave her a lot of support and inspiration during her recovery. Four months after her stroke, Mudd was back on the ice.
“I think everyone was secretly really worried that I wouldn’t be able to do it again,” Mudd said. “But I got on and picked it right back up like it was nothing.”
Other parts of the girls’ lives have remained a source of frustration, such as education.
Ogden, Mudd and Anderson are all scheduled to graduate this year, but none of them was able to go back to their respective schools after their strokes, either because of continuing medical problems or because their schools weren’t equipped to deal with their conditions.
For example, Ogden has aphasia, a communication disorder that has no effect on intelligence but can interfere with her ability to speak, read or write. She uses a phone app with pictures to help her communicate when she can’t get the correct words out.
She’ll try some community college classes and see what happens, Ogden’s mother said.
“She desperately wants to continue her education, but for most people who are dealing with things like aphasia, there isn’t a college program out there for someone like that,” she said. “She has worked very hard to graduate from high school on time after missing most of her sophomore year. So that’s a great accomplishment.”
Anderson has continued her schooling through an online program at Millcreek Learning Center in Olathe and has a job providing after-school care to younger children at a local YMCA. She, too, will try a few classes at a junior college and see how that goes.
“My goal is to make her as independent as possible,” Kathy Anderson said.
One example of what is possible for young stroke survivors is Amy Jo Ervin. The former Kansas City firefighter had a stroke at age 31 in 2012 while working out.
After initially being paralyzed on the left side, she can now walk with little assistance and even continues to work with the Fire Department in its dispatch division. She got in contact with the Wooddells after seeing a news item about them and began helping out with Orange Popsicle events not long after being released from the therapy hospital.
Ervin said she is frustrated by people placing the same limits on young stroke survivors as those placed on elderly ones, but she says she ultimately ignores them. She said it’s possible she may one day return to firefighting.
“I’m not going to be this way forever,” Ervin said, adding that hard work brings results.
“Sometimes you get those doctors who say ‘You never’ or ‘You won’t,’ and they love to say those things. … I think in the next 10 years, it’s going to be completely different, and it’s going to be ‘You will’ and ‘You can.’”
National Orange Popsicle Week events
May 9: Auto show 10 a.m.-5 p.m. Bass Pro Shops, Olathe
May 15: Saving Strokes golf tournament, noon, Falcon Ridge Golf Club, Lenexa
May 22: Fountain Friday, J.C. Nichols Fountain at the Country Club Plaza turns orange
May 23: Wrap Party, featuring music, raffles and auctions, Homer’s Coffee House, Overland Park.
For more information: www.nopw.org.
▪ Sudden numbness or weakness in an arm, leg or the face
▪ Sudden confusion or trouble understanding
▪ Sudden trouble seeing out of one or both eyes
▪ Sudden trouble walking, dizziness, loss of balance or coordination
▪ Sudden severe headache with no known cause
Source: American Stroke Association