Young Man with Cerebral Palsy Transforms His Health

November 12, 2012
By Cathy Dyson

Sometimes, John Langin works out in a baggy old baseball shirt that means a lot to him.
Not because the name on the front is the “Braves,” though it suits Langin. He was born with cerebral palsy and fought to do the same things other kids did—then had to listen to them make fun of his disability.

The shirt reminds Langin how far he’s come.
He was 11 when he got it. He was so overweight, he needed an extra-extra-large adult size. Langin kept adding on the pounds until after high school, when he was inspired by a contestant on the TV show, “The Biggest Loser.”
He cut out snacks and ate more home-cooked meals, then sought a personal trainer to get in shape.
As a result, the 20-year-old lost 120 pounds in a year and gained the self-esteem he lacked as a youth. He’s able to do bench presses and squats, jog up stairs and jump from the floor to a box several inches off the ground.
“Hey, not bad for somebody who was not supposed to walk,” said Shane Miller, his personal trainer at American Family Fitness near Massaponax.

A GRIM DIAGNOSIS
Langin lives in Spotsylvania County with his mother, Carol. His father, John, died in 2010.
At 2, his parents were told he had been born with cerebral palsy, a disorder that can affect movement, learning, hearing, seeing and thinking.
Problems often are caused by an abnormality in the brain and develop in the womb. They also can happen any time during a baby’s first two years.
Langin had had a rare infection when he was 2 months old, and doctors weren’t sure if his problems were from the infection, cerebral palsy or both.
“At 5, they told me he would probably never walk or run or do more than be able to write his name,” his mother said. “They said I’d be lucky if he graduated from high school.”
His mother considered him lucky because he was more mobile than most cerebral palsy patients, though his gait was noticeably different.
Classmates were more than happy to point out the crooked way Langin walked and how he almost hopped when he tried to run. Kids made fun of how he wrote, too, and Langin said his big block lettering still looks like a third-grader’s.
Langin turned to food to try to make himself feel better after a long day of cruel comments.
“The bigger I got, the more depressed I got so the more I ate,” Langin said in a video he did with Miller about his transformation. “I would eat mozzarella sticks, snack cakes—you name it, I ate it.”
His mother knew how much he was suffering at school and let him raid the cupboards.
“I would do anything to make him happy, to make him feel loved, and food was great for that,” she said.
She later realized she was compounding the problem.
“His size is just as much my fault as anybody’s,” Carol Langin said. “I hope he learns from my mistakes You can’t find joy with food.”

A WORK IN PROGRESS
Langin weighed 320 pounds when he decided to lose weight. He dropped about 60 pounds on his own before heading to American Family Fitness in April of this year.
The membership director paired Langin and Miller—though Miller and Carol Langin believe God had a hand in bringing them together.
The two began with exercises that increased his range of motion, just as Miller would do with anyone who’s out of shape.
The trainer knew Langin had had numerous operations to correct issues related to his cerebral palsy. He wasn’t sure how much Langin could do—or if he could do certain movements at all.
Once he realized he could get all Langin’s muscles firing and joints working without hurting him, he turned on the heat.
The two have run sprints and climbed hills, rolled tractor-size tires in the parking lot and built up the strength in Langin’s legs, his weakest body part.
Miller has been amazed by how Langin’s body has responded. The young man who started workouts six months ago—on his butt, without bearing any weight or testing his core strength—regularly breaks his own records on rowing machines and with bench presses.
“How awesome is that?” Miller said. “Every day we work together, he is blowing my mind about what he is capable of doing.”
Langin routinely gets to the gym 30 minutes ahead of his session with Miller so he’s warmed up and ready. He regularly stays after and comes in at least once a day on his own.
His mother says he has the highest tolerance for pain of anyone she knows. Miller regularly asks Langin if he’s hurting, especially after he did 60 “junkyard dog pushups” when he had 30 pounds of chains hanging from his neck. Langin repeatedly swore that he wasn’t sore.
Miller has to insist that Langin take a day of rest to allow his body to heal.
“I think he’s the only client I’ve ever told not to come to the gym,” Miller said.

‘A LIGHT BULB WENT OFF’
Miller cited several examples of Langin’s willingness to change any aspect of his diet or workout routine.
Miller suggested eating more vegetables—beyond corn, green beans and mashed potatoes. Langin sampled zucchini, acorn, butternut and yellow squash. He missed pasta, so his mother substituted spaghetti squash for angel-hair noodles, and Langin said he can’t tell the difference.
One day, Miller encouraged Langin to try three new machines in the workout area. The next time the two went to the machines, Langin had been on every apparatus in the place—and there are several hundred different pieces.
“He really will do whatever it takes,” Miller said.
Langin’s mother said it’s part of his tunnel vision. When something catches his interest, he gives it his entire focus.
Langin, who gets Social Security for his disability, decided to focus this year on getting fit. Next, he’ll set his sights on becoming a personal trainer.
“It’s like a light bulb went off in his head, and it burns every day,” his mother said. “Some days, brighter than others.”

‘NEVER BEEN HAPPIER’
Miller doesn’t refer to Langin as the guy with cerebral palsy or the one who lost 120 pounds.
“I describe him as the guy with no excuses,” he said.
He’s heard other trainers fuss at clients for not giving it their all. When Langin is on the floor, working out next to someone who is struggling, another trainer will point at Langin and say to his client, “He’s got cerebral palsy? What’s your excuse?”
Another trainer, who saw Langin on the stairs, nodded and said, “What’s up, superstar?”
Langin, who graduated from Courtland High School in 2011, recently worked out with some fellow graduates. Joshua Bailey and Peter Garrison played football at Courtland and were among the few who looked out for Langin in school.
“We all knew he had knee problems,” said Bailey, adding he had no idea Langin had the wherewithal to make such life changes. “You impressed me, John.”
Garrison called him “awesome.”
That interaction wouldn’t have happened 100 pounds ago, Miller said. Langin wouldn’t have seen the two in the gym or had the confidence to work out with them, the trainer said.
“People can’t believe the changes I’ve made,” Langin said, smiling. “I’ve never been happier in my life.”
John Langin had his motivation tattooed inside both forearms. “Determination–Dedication” is on one side, and “I only get this one body” on another. Langin has six goals:

• 1. To become a personal trainer.
• 2. To compete in a CrossFit event, which would test his overall fitness and strength.
• 3. To be under 200 pounds, “just to see it on the scale.”
• He hit 200 last week.
• 4. To tone up a little more.
• 5. To get to the peak of Old Rag Mountain. He and trainer Shane Miller made it 4 miles up, then had to turn around because they were pressed for time.
• 6. To run–walk a marathon.
  

Join Our Family
Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.
For more information about cerebral palsy please visit:
http://www.cpfamilynetwork.org

Teen With Cerebral Palsy Bridges Gap For Those With Disabilities

November 1, 2012
By Lissa Blake

Imagine having to play charades all day in order to get others to understand you.

That’s what life is like for Lydia Dawley, a sophomore at Decorah High School who suffers from cerebral palsy.


“It’s very frustrating,” said Dawley.

But although Dawley is confined to a wheelchair, she doesn’t let it get her down – or even slow her down. Dawley is becoming an outspoken advocate for persons with disabilities, presenting to college classes, at political forums, symposiums and conventions.

“Making your voice heard is only one part. The wheelchair doesn’t define me. It means you have to do things differently, not that you can’t do things,” she said.

Dawley recently returned from a trip to Des Moines, where she was a special guest at the Midwest Association for Medical Equipment Suppliers (MAMES).

Dawley, who dreams of someday being a lead advocate for persons with disabilities, said she enjoyed having the chance to meet Congressman Tom Latham.

“I feel so honored … I was so interested in listening to what he was saying and learning so much more about government and what I can do to help make a difference for others. I have already started writing some letters,” she said.

While Lydia is non-verbal, she is still cognitively on target. She is able to “speak” through an augmentive communication device which is attached to her wheelchair. The apparatus, available through Talk to Me Technology, works two ways: first, there is a camera attached to the screen. It zones in on the pupil of her eye, which she can then use to point to letters on a keyboard. Second, she has a Blue Tooth attachment on her wheelchair joystick.

“What is so cool about this is it sends a light to the pupil of my eye. Without this, I wouldn’t have the opportunity to speak in class or communicate with my friends,” said Lydia.

While this method of communication is relatively time-consuming, she has some preprogrammed phrases that help her on a daily basis. When preparing a lengthy speech like the one she gave at MAMES, she develops the text ahead of time, and is then able to play her speech, which sounds like a computerized female voice.

“She has a business card that says ‘A teenager with a voice! Trying to close the gap,’” said her mother, Jacque.

In the speech she typically gives, Lydia explains how she was born with her umbilical chord wrapped twice around her neck.

“I wasn’t breathing and was brought back to life. So now you can tell people you met a dead person,” quips Lydia.

She explains that cerebral palsy is a non-progressive, non-curable disease that she will have all her life. It results in a group of chronic conditions which inhibit her body movements and muscle coordination.

She credits her amazing drive and motivation to the support of her parents, Nathan and Jacque Dawley, of Bluffton.

“When I was 18 months old, a doctor tried to tell my parents they needed to accept that I was disabled. My dad picked me up and walked out of the room. Lucky for me, my parents have always listened to their gut feeling. They’ve always given me a chance,” she said.

“If my parents had listened to that doctor that day, I wouldn’t be here today to talk to you. People believing in me gives me the feeling there’s nothing I can’t do,” she said.


Early support:

Dawley said because she is non-verbal, she had to learn to read at a very young age to be able to communicate.

“My preschool teacher, Beth Crawford, told my parents, “There is something in this girl’s head,” said Lydia.

“I learned early on to communicate in nontraditional ways, to make friends, to get along in life. Interestingly enough, I witnessed some amazing changes in other students. They realized that if a person who can’t walk can do the things I was doing, everyone is capable if you believe in them.”


No limits:

Dawley is active in 4-H and shows goats, sheep, horses and her dog at the fair. She also gave her prepared advocacy speech through a communication competition in 4-H.

At school, she recently participated in speech competition. Her instructor, Amanda Huinker, helped pave the way for her to utilize her assistive technology device to excel at district competition, after which she moved on to state, receiving No. 1 ratings from all the judges.

Huinker said she really enjoyed working with Lydia on her speech.

“The process of working with Lydia was such a positive one; I too grew from the experience. She is an amazingly sweet girl who wants to make her mark on the world just like everyone else, and she most definitely does have the power to make a difference through her words; the fact that her words come through the voice of a computer doesn’t change the powerful message behind them – perhaps it even strengthens it,” said Huinker.

In her spare time, Lydia works with families of children with disabilities at Team Rehab in Decorah. In 2001, the Dawleys traveled to Poland with therapist Lisa Krieg to learn about Therasuit therapy, which is now available to patients in Decorah.

“Lydia talks to a lot of the patients who go there as an inspiration for the patient and their parents, of how not to let obstacles get in your way. They see what an inspiration Lydia is. How life doesn’t have to stop because they have a disability,” said Jacque, who added she is willing to help families get in touch with the companies who offer the assistive technology her daughter uses.


So proud:

Jacque said she and Nathan are so proud of Lydia and how she has become such a strong advocate.

She credits much of Lydia’s success to the Decorah School System.

“They were wonderful, helping us figure out how Lydia’s school days can go, how to help her do the work. They know she’s capable. Like Beth Crawford said: she gets it and you need to not let her stop,” she said.

“I feel very fortunate to live in this District and to have this school system behind us. Many other students we meet from other districts and other states don’t always have that support. Decorah is advanced in their thinking and in their technology and in their willingness to put the students’ needs first,” said Jacque.


What’s next?

Lydia has been asked to attend several upcoming technology lobbying events.

She said after graduation, she hopes to go to college at the University of Northern Iowa or in Washington, DC in order to work in speech pathology or get into government.

“With a supportive family, therapy and assistive technology, people with cerebral palsy can lead productive lives … If given the right tools, they can offer so much to society. I hope you will take time in your life to realize that everyone is capable. Everyone has a voice,” she said.

Join Our Family
Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

Student with Cerebral Palsy Blogs for Teens

October 4, 2012
By David Whiting

Some say forget weaknesses, focus on your strengths. But there are those who turn weakness into inspirational power.

If you’re young and have cerebral palsy, chances are you’ve heard of Katy Fetters. If you haven’t, here’s your chance to meet Fetters in her salad days. I suspect we’ll be hearing more from this college sophomore.

Fetters, now 20, launched her teen cerebral palsy blog three years ago, just won a $19,000 scholarship for an essay about her condition and this summer was profiled on national television.

When many her age aren’t sure what they’ll do with their lives, Fetters already is changing lives.

The spark? Insecurity.

• •

Fetters and her twin sister, Sara, were born at 27 weeks. They each weighed about 2 pounds.

Sara was OK. But doctors said Katy would never walk, never talk.

I meet Fetters at her school, Soka University, built on a bluff in Aliso Viejo. Standing before glistening pools, there’s a blonde in aviator sunglasses who looks as if she walked out of the MTV show “Laguna Beach.”

I’ve read Fetter’s blog. Insecure? Come on.

Fetters walks toward me. She is not fast, tilts up and down a little, sort of drags her left leg.

For a young woman raised in a culture where appearance is paramount, it’s a tough way to make an entrance.

Regardless, Fetters walks with purpose, determination and an emerging confidence.

We walk around campus, climb stairs, sit – and talk.

Those baby doctors had no idea whom they were dealing with.

• • •

Cerebral palsy is a non-progressive disorder caused by damaged motor control centers. It can occur during pregnancy and through age 3. Premature infants are especially vulnerable.

There are many forms, many stages. Fetters calls her condition mild. She explains that her brain has a hard time, sometimes an impossible time, telling the left side of her body what to do.

Her left hand works, but not nearly as well as her right. He left leg? Not so much.

But that has never stopped Fetters from doing anything. Except surfing.

Fetters grew up in Huntington Beach with a younger sister, an older brother and Sara. For a kid with CP, as Fetters calls cerebral palsy, she says hers was the perfect family.

Big brother offered a buffer when he was a high school senior and Fetters was a freshman. She had Sara and other friends as companions. And mom and dad understood the depth of human potential, of tapping into inner strength.

Her mother, Carolyn, was a rower while at UCLA where she happened to study CP. Her father, Paul, moved from Michigan to California to become a bodybuilder and is founder of the Training Spot gyms in Huntington Beach.

Growing up wasn’t about can’t. It was about can.

• • •

When Fetters was a toddler, she didn’t toddle. She crawled, combat style, arms pumping, legs following. She mastered walking when she was 3.

When friends started to skateboard, Fetters flopped on her belly and turned her skateboard into a sled.

She didn’t think much of her switch-ups. She just wanted to play. It wasn’t until the twins were 5 and Sara started riding a bicycle that Fetters grasped she was different. It took her three more years to ride a bike.

“Looking back,” Fetters laughs, “I was a nut.” A tough nut.

She joined AYSO soccer when she was 8 and didn’t stop until last year. Her secret? “Not to outrun but to outsmart.”

But on the field she mostly forgot about CP – just as her teammates did. She sometimes wondered, “Why am I so slow?”

Still, there were stark reminders. Growing up, she was supposed to do physical therapy an hour a day. A series of casts stretched her ankle. Doctors operated on her leg to lengthen a tendon. She had to wear a brace on her leg every night – she still does – and during the day for months at a time.

But her teen years proved even more challenging.

• • •

In middle school, Fetters went out for cross country and managed to keep up with the middle of the pack.

Still, one kid said she had a fake leg. Another said, “I heard you can’t run.”

Fetters used the comments as fuel, posting her best mile ever.

Understand, that mile came with suffering. “I hate running,” Fetters confesses. “It’s the hardest thing in the world.”

High school, with far more students and a much larger campus, tested her limits. “I fall a lot in general. I trip over my own feet,” she says.

One day, she took a dive in front of a bunch of upperclassmen, books and knapsack splayed. No one teased her, but she felt humiliated, defeated.

She went home and cried, withdrew. Then in the summer of 2009, before her junior year, she regrouped.

Fetters cut her waist-length hair to a bob, took ownership of what she now calls a “disability” with her fingers marking the quotes and – with the help of Stanford University student Greg Greiner – started teencerebralpalsy.com.

The blog was an instant hit. Today, Fetters gets 5,000 page views a week and hears from people as far away as Africa and Australia.

One teen: “Hi, I’m 16 and have CP (I’m in a wheelchair at the moment). I have been having a really hard time at school because I just don’t fit in.”

Fetters’ reply: “I have found that it is easier to connect with people if you are more open with them about how CP affects you.”

Fetters shakes her head, “It’s crazy to realize how much power there is in words. I had no idea I was considered inspirational.”

But it wasn’t just others that Fetters was inspiring.

• • •

Being human, Fetters has her down times. Watching herself on Fox’s show “Live Life and Win” was the best and worst of times.

“Who ever would have thought I’d be on TV,” she says, still marveling at the experience. At the same time, she hated watching herself. “I didn’t realize I walked like that. That was really overwhelming.”

But Fetters shakes off the negative and focuses on the positive, saying the show helped others find her blog, a blog she credits for a huge shift in her confidence.

For her next project, Fetters is considering writing a book about what she’s learned to help students who struggle in high school.

It could be a book for all teens.

Join Our Family

Sign up for our free enewsletter for more blogs, articles, and news about CP kids and their families.

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org