Published on July 07, 2016

Active Teen Recovering From Devastating Condition

Kale, 16, woke up one morning with a stiff neck and ended up losing function in his legs and arms

Had to be the pillow.

Kale Hyder woke up on June 17, 2015 with stiffness in his neck. Maybe he had slept in a bad position, he thought. Maybe he had pulled a muscle playing basketball the previous day. He also lifted weights for basketball. Maybe that was the cause of the stiffness.

But he also blamed the pillow and asked his mother, Marcy, about a new one.

The stiffness and tingling in his fingers didn’t have anything to do with the pillow. That day, June 17, 2015, would become a life-altering day for the active teen and his family.

The following morning he felt like the stiffness was going away. By the afternoon though, he was calling his mother at work and telling her she needed to come home immediately. He couldn’t push himself off the couch.

“Mom, I can barely move my arms. I don’t get what this is,’’ he said, recalling their phone conversation.

Later that day he could barely walk. His mother had to help him up and help him into the car. The pediatrician didn’t see anything. X-ray images didn’t disclose anything unusual. Kale was referred by an emergency department to OSF Medical Center in Peoria.

Rare Discovery

After a long MRI procedure, early in the morning in a hospital room, the family got the news. Kale Hyder became one of only 1,400 people in the United States each year to be diagnosed with Transverse myelitis, an inflammatory disease of the spinal cord.

“You think, ‘ok, I don’t know what that is. But how long before it goes away? How long before I play basketball again? We’ll get through this,’’’ Kale said of the diagnosis. “You think it’s going to be a few weeks and you’ll be back to normal.’’

That was more than a year ago. The entire year since has been marked by setbacks, challenges, disappointment, progress, emotions, therapies and finally, a visible path back to something resembling “normal.’’

Because of the way the condition attacks the spinal cord, Kale lost function of his legs and arms. He lost muscle mass. He couldn’t walk or accomplish other tasks that usually would be taken for granted.

You don’t think about moving your hands--it just happens. You walk, you move your arms, you reach for items, you open your hands to grab. The brain tells the muscles to move and they move.

All of those signals were at least temporarily gone from Kale’s world.

Did the active high school kid who loves basketball think, “why me?’’

“Sometimes,’’ he admitted. “There were really bad days. I just wanted to do normal things again. I wanted to play basketball and hang out with friends, go to the pool, shop at the mall, go to school."

“When my friends were all doing those things, I was in rehabilitation not sure what was going to happen to me."

“I had a lot of bad days when I wasn’t making the progress I wanted. It took a lot of faith and hope when there wasn’t much to be hopeful about.’’

Making Progress

Then there was intensive outpatient care, also at Shriners, four days a week. His next year was filled with treatment, therapy, steroids, medications and hospitalization. From June 29 until the end of the year, Kale Hyder was under the care of Shriners Hospital in Chicago, first as an inpatient. He didn’t go home even one day until Aug. 24. He was able to keep up with studies at Davenport Assumption High School, although he couldn’t attend in person every day.

He was making progress, although when you are a teenage, the whole process of what he was going through was inconceivable. His mother now calls it “devastating’’ and “heartbreaking.’’

“He had to relearn everything. How to brush his teeth, eat, walk,’’ Marcy Hyder explained.

“But I was around other people who were going through the same kind of thing I was. That makes a difference when you are trying to get better. I’m a competitive person, and I was competing with others to get better,’’ Kale said. “I wanted to reach the next level before everyone else. I wanted to be the best.’’

If anything, Kale had an advantage over others. He was young and was fit from basketball, cross country and lifting. And he had a resolve to get better.

“There were very tough days, but Kale was not going to let this beat him,’’ Marcy Hyder said.

Technology Available at Genesis

Kale now works with the physical and occupational therapists of Genesis Physical Therapy. He is taking advantage of advanced technology available from Genesis, including Bioness at the Valley Fair Clinic working with physical therapist Liz Arp, and the Alter G anti-gravity treadmill working with physical therapist Patty Darland at the Devil’s Glen location.

At Devil’s Glen, Kale works with occupational therapist Cherie Blackwell on exercises and games to regain function of his arms and hands.

He has advanced from wheelchair, to walking with the assistance of a robotic device, to wheeled walker, to now walking independently with a brace. He’d like to get rid of the brace.

To treat the loss of function in his hands, he had an intricate nerve regeneration surgery in New York City from one of only a few doctors in the U.S. who perform the surgery. Over the course of several months, the hope is that the nerve function will improve and carry the signal more effectively from his brain to his hands, allowing him to open his hands easier.

“Kale has made a ton of progress,’’ said Blackwell. “Considering what he has been through, he has a very positive attitude and that has helped him exceed expectations."

“Because he was in such good physical condition, and because he is an athlete, he has probably progressed better than many others would.’’

Genesis Physical Therapy combines skilled therapists with the latest technology to improve the outcomes of patients. Click here for more information about physical therapy and rehabilitation services.

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