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Life after locked-in syndrome: Aurora man finds will to live after rare, paralyzing condition

Lying motionless in a hospital bed, Jose Rodriguez Jr. lost the will to live.

He’d suffered a stroke, fallen into a coma and awoken with an extremely rare condition known as locked-in syndrome. He was unable to move anything except for his eyes.

Previously a healthy young man, Rodriguez now couldn’t walk, talk, swallow or even breathe on his own. He felt trapped inside his body.

As the reality of his situation sunk in — that he could no longer work or hug his mother — Junior, as his family calls him, felt the life he’d had was over. He wanted to die.

To survive, doctors said, he needed surgery for a tracheotomy, to attach a ventilator through his throat to keep him breathing.

Rodriguez’s father pleaded with him to have the life-saving operation. But now that he was conscious, the decision was his.

When the doctors asked for his answer — looking up meant yes; down was no — Rodriguez didn’t respond at first. He thought of his father, with whom he’d always been close; the two even worked at the same Naperville warehouse. However desperate his situation, Junior decided, he did not want to let his father down. He rolled his eyes upward. He would do what he could to survive.

That decision began a long, torturous journey for Rodriguez, his family and a team of medical workers. Eventually, it would move him into an even rarer status: someone who is recovering from locked-in syndrome.

His experience reflects a movement in stroke treatment toward therapy that promotes new connections and functions between nerve cells, called neuroplasticity. Where the brain was previously thought to have little ability to regenerate, recent research has suggested that exercise and movement can promote healing. The idea is to get the body moving, and the brain follows.

Rodriguez’s decision wasn’t without some second-guessing, though, as he faced a seemingly insurmountable challenge to move again.

“It was only (from) my mom and dad’s constant reassurance that I’d get better (that) I had a change of heart,” Rodriguez said in an email. “Ever since then I’ve been working to get myself better.”

Uncomfortably numb

On Aug. 5, 2013, Rodriguez felt a sharp pain in his head and strange numbness on his side. He didn’t think much of it, and it soon went away. He went to work, moving heavy shipping orders at a train parts facility.

Co-workers warned his symptoms could be signs of a stroke but, Rodriguez, then 31, thought he was too young and healthy for that.

The next morning, the headache was back and worse, and now his entire left side was numb. He drove himself to the emergency room at Rush Copley Medical Center in Aurora, where, he later wrote in a memoir about his ordeal: “My whole body began to shake uncontrollably. … I tried so hard to stop shaking, but I couldn’t. I blacked out and that’s all I remember.”

Rodriguez was airlifted to Central DuPage Hospital in Winfield, where he underwent a four-hour surgery to remove the clot causing his stroke. He was in a coma for about 12 days.

When he came to, he not only was paralyzed, but his brain could no longer regulate his body temperature. He became so overheated that sweat pooled in his eye sockets. He was packed in ice with fans blowing on him.

Early on, Rodriguez — who shared his recollections through his memoir and via email, with his family and some of his medical attendants confirming details — suffered severe hiccups that caused a hernia. He underwent another surgery to repair the hernia and install a feeding tube. He still uses that, subsisting on a liquid diet.

During those times, his father often slept in his room because he was afraid to be alone. His mother and six younger brothers also visited frequently. One of his uncles promised him $100 if he could someday give the middle finger.

Every day, a nurse tested his reactions by pinching his finger. Unlike some people with paralysis, Rodriguez can feel his body, and he flinched every time. But medical workers were still waiting for some sign that he could initiate voluntary movement.

Extreme paralysis, extremely rare

The extremely rare condition of locked-in syndrome occurs when the brain stem is disabled and can no longer relay signals for functions like movement, breathing and heart rate. The syndrome can develop from a stroke, tumor, injury or from ALS, also known as Lou Gehrig’s disease. French journalist Jean-Dominique Bauby described the condition in his 1997 memoir “The Diving Bell and the Butterfly,” later made into a film.

Most people with locked-in syndrome don’t regain movement. In one study of 14 patients, about 20 percent recovered some movement, about 30 percent regained some verbal communication and about half were weaned off a ventilator.

Rodriguez’s recovery appears to be a good example of neuroplasticity at work, according to expert Edward Taub, a University of Alabama at Birmingham professor of psychology not involved in Rodriguez’s treatment.

As director of the university’s Taub Therapy Clinic, he oversees treatment of patients with strokes and other injuries. His clinic uses constraint-induced therapy, in which patients use incapacitated limbs to repeat tasks like moving checkers to build up fine motor skills.

The key, Taub said, is to increase the difficulty of the task slowly so the patient keeps striving to improve. Through repetitive motions, and more intensive therapy than is otherwise typical, the theory is, the brain grows new connections to rewire itself.

“The heart of it is, use it or lose it,” Taub said. “If you use it, it’ll keep improving.”

Rough road to rehabilitation

Rodriguez took that attitude to heart. After recovering from surgery, he tried each day to make some movement with his body, and by the time he left the hospital, he was able to open his mouth slightly. Eventually he could breathe on his own, his ventilator was removed and he was sent to the Rehabilitation Institute of Chicago, now called Shirley Ryan AbilityLab.

There, he began different therapies to relearn how to speak, eat and move. One therapist had him work on moving his head from side to side.

To communicate, he would spell out words by lifting his head when a therapist pointed to letters on a card. It was laborious, but it allowed him to convey thoughts beyond yes and no.

There were times, he said, that staff members made no effort to communicate with him or left him in his wheelchair or leg braces too long until it became painful.

“I never felt so vulnerable,” he said.

His family transferred him to Marianjoy Rehabilitation Hospital in Wheaton, closer to home. There, he would meet the team that would help to bring him back to life.

At Marianjoy, a speech therapist made sure his teeth were brushed every day, encouraged him to make what few sounds he could with his voice and got him to begin eating a bit of blueberry yogurt.

He later practiced chewing gum with a string attached so he could pull it out without swallowing, and eventually was able to eat pureed food.

He also tried his first motorized wheelchair, which he directed with head movements, but it was difficult and scary for him since he couldn’t control it well.

Like some other stroke patients, it was also very hard for Rodriguez to control his emotions. Sometimes he would laugh uncontrollably at inappropriate times, and worried that people thought he was laughing at them.

One day, while sitting in a wheelchair with other patients waiting for therapy, it struck Rodriguez how profoundly disabled he was, and he began sobbing uncontrollably. Using the letter board, he kept asking his parents, “Why me? I don’t deserve this, and I just want to be normal again.”

He blamed God for what happened, until his father convinced him that if God controlled such things, only murderers and rapists would be struck down.

“He was right. Circumstances put me in this situation, and only I could get myself out,” Rodriguez wrote in his memoir. “When I got to Marianjoy’s garden outside I was suddenly hit by how beautiful the day was and started to weep. It was a lesson for me not to take anything for granted, and appreciate even the little things.”

Slowly, he began to recover a lot of movement in his right arm and leg, but not on his left side. Therapists used robotic exo-skeletons to move his left arm and to help him walk. The exo-skeleton provided all the motion to start with, then less and less as he learned to move using his own power.

That’s crucial to relearning movement, researchers say, because to rewire neurons, the brain has to will the movement and then learn from trial and error, like a toddler, rather than just letting the body move passively.

The physician who oversaw his rehabilitation at Marianjoy, Dr. Anjum Sayyad, said Rodriguez’s recovery was a testament to his youth and health, his motivation to get better and his family’s support.

“It was really unusual to see how much he recovered, probably the best I’ve ever seen in a locked-in patient,” Sayyad said. “He is a walking miracle. Jose taught me that for any patient, regardless of their diagnosis, you can’t assume what’s going to happen. I have much more faith in what people can do.”

For locked-in patients who don’t show such strides, though, researchers are trying to find other ways to reach them. Ongoing studies are looking into whether brain-computer interfaces can help patients communicate.

One study out of the Netherlands, for instance, claims to be the first to test whether a device implanted in the brain can read activity directly in the brain and convert it to a digital switch, initially to answer yes or no questions, and eventually for other commands.

A new life back home

With daily practice and effort, Rodriguez learned to breathe on his own and get rid of the tracheotomy tube in his throat, which made him much happier. With the help of therapist Kelly Ball and a support harness, he gradually learned to stand, then to take a few steps and then to walk about 70 feet.

He also learned to operate a power wheelchair with his hand, and doctors cleared him to go home.

Though Rodriguez owned his own house, he moved into his father’s home in Aurora, where his brothers and stepmother help to take care of him. His father built a ramp so his son could wheel into his own room on the ground floor, and installed a bell for his son to ring anytime he needs help.

“He was always very strong-willed, very positive,” Jose Rodriguez Sr. said. “I push him as much as I can. He tries as hard as he can. Of course I’m proud of him.”

To communicate, Rodriguez Jr. learned to use a Tobii eye-tracking device, with which he could type letters into a computer by focusing his eyes on one letter at a time. With that, he could speak with a computerized voice, write emails and texts, set an alarm, use Facebook and other apps, play games and music, and take photos.

As he recovered more movement in his hand, he began to write on a laptop, typing with one finger. Rodriguez had written fiction for years as a hobby before his stroke, and since has continued writing a series of science fiction/fantasy books called “The Guardians of Rhea,” in which monsters are re-imagined as races that must join together to fight evil.

With his father’s help, he’s learned to live with his condition. He exercises daily at home and takes occasional trips around the neighborhood and out to stores or movies. The improvements are slow: More than five years after the stroke, he can now speak a word or two at a time, though it remains easier to write. He also gets regular Botox shots to relax the tightness in his left arm and leg. With his father’s help and a special lifting device, he can get out of bed to move around in his wheelchair and can sit at a desk his father made for him to write on his computer.

After all he’s been through, he wrote, hunting down one letter at a time on his laptop, he’s glad to have a second chance to live.

“I can’t tell you how many times I thought about giving up or being better off dead, but I found the strength to move on,” he wrote. “Whatever you do, don’t ever give up. There is always hope.”

rmccoppin@chicagotribune.com

Twitter @RobertMcCoppin