Tuesday 23 Sep 2014

Information and opinions presented here do not always represent the views of the American Heart Association.

Locked-in syndrome leaves former athlete in complete muscle paralysis

Published: 2:05 pm CDT, July 23, 2014

For Patrick Stein, having even a simple conversation is a complicated and tedious process.

Patrick, who lives in Northfield, Illinois, has Locked-in syndrome, a debilitating condition caused by a massive stroke that left him mentally alert and aware, but with almost complete muscle paralysis.

He is able to move his eyes up and down, blink, and, after nearly four years of therapy, make subtle moves with his right fingers and arm. But he cannot swallow, move or speak.

Neither Patrick nor his family knew anything about the condition before his stroke. Today — even as they struggle with daily life — they are working to raise awareness and promote research.

“It stinks, but you need to continue to fight to find some way out,” Patrick said through the specialized computer that enables him to communicate.

The ruptured aneurysm that caused Patrick’s debilitating stroke was actually his second brain aneurysm.

The first, located behind his right eye, was discovered when Patrick was only 10-year-old. It was found after unexplained spells of severe headaches and vomiting.

The aneurysm was treated with a balloon occlusion and the prognosis was good. Patrick was told to avoid contact sports, but encouraged to participate in cardiovascular activity to help his body develop new blood vessels.

He was an active teen, running and competing as the team captain on his school’s swim and water polo teams. For seven years, the Steins put fear behind them.

Then on Oct. 8, 2010, Patrick came home with a terrible headache. He felt a little better the next day and the high school senior attended his homecoming dance as planned. But early the next morning, the headache returned with pain so intense, his parents took him to the local hospital.

It was another brain aneurysm.

“Anytime Patrick complained of a headache, there was always that thought, ‘God, please don’t let this be another aneurysm,’” said Nick Stein, Patrick’s dad.

This time, the aneurysm was located near the brain stem, where motor function and control is located. He was transferred to Northwestern hospital and doctors proposed a three-stage surgery to repair the aneurysm that would take up to 20 hours.

After completing the first two parts of the surgery, doctors found the aneurysm was larger than expected, making the surgery more complex. While they were trying to determine how to treat it, the aneurysm ruptured and Patrick suffered a massive stroke.

Just 17-years-old, Patrick spent the next two months in intensive care. He was diagnosed with Locked-in syndrome.

“He went from fully functioning to having lost it all in a matter of minutes,” said his father.

Stroke is the No. 4 cause of death in the United States, and the leading cause of disability.  Locked-in syndrome is an extremely rare, but debilitating effect of stroke.

“It’s like being buried alive, coupled with the fact that Patrick cannot call out for any help or assistance,” said his father.

For nearly four years, Patrick has undergone a variety of occupational, physical and medical therapies in an effort to keep his body moving and recapture the slightest muscle movements.

About six months after his stroke, Patrick began to have slight movement in his right hand, beginning with a subtle twitching of the muscle at the bottom of his pinkie finger.  With regular therapy, Patrick can now move two of his fingers about a half an inch. That, combined with his eye movement, is enough to operate sensitive switches on special computers that help him communicate. It also allows him to operate an electric wheelchair.

“It’s very slow and tedious,” said Mr. Stein.

For the family, maintaining access to services, therapies and care for Patrick is a constant struggle as they try to help their son recapture any type of movement and live as normal of a life as possible.

His father and his mother Colleen are both self-employed, and have to be ready to drop everything if a nurse or aide doesn’t show up for a shift.

Patrick is the oldest of three; his sister Tierney, 19, will be a sophomore the University of Illinois at Urbana-Champaign; his sister Tara, 18, will attend the University of Texas this year as a freshman.

“No one who hasn’t lived this can every fully understand what its like or what it takes to get through a day, a week or a month,” said Mr. Stein. “As hard as it is for us, it’s even worse for Patrick.”

It’s a tough balancing act. Patrick, who is now 21, requires 24-hour care and even a minor illness can pose a setback. Respiratory deficiencies caused by the stroke put him at constant risk for pneumonia. This spring, Patrick developed a blood clot – something he’s more susceptible to due to immobility – and required hospitalization and a suspension of physical therapy

Patrick is also continuing his education. He has completed coursework to meet high school graduation requirements and is taking online classes through the local community college with the help of specialized services available to students with disabilities. The family is evaluating the possibility of Patrick attending the University of Illinois through its Beckwith Residential Support System, a program serving students with significant disabilities at its Urbana-Champaign campus.

“We’re trying to maintain some semblance of a young adult life,” said his father.

Patrick maintains a core group of friends who visit regularly.

“He finds ways to show his humor, even to people he meets for the first time,” Mr. Stein said. “He is always up for a good prank or laugh.”

Patrick’s story has inspired others try to raise awareness about the effects of strokes. A group of community leaders is working to establish a 501(c3) called the Crush It! Foundation to raise money for stroke-related issues, services, rehabilitative and restorative research and therapies.

Meanwhile, filmmaker Colleen Shaw, whose brother was a classmate of Patrick’s, raised more than $17,000 with the help of a Kickstarter campaign to produce a documentary about his condition called All In My Head- The Patrick Stein Story. The 30-minute film is currently in post-production and the filmmaker hopes to expand it into a feature-length project as part of a mission to highlight stories of mental strength.

Patrick’s resilience has been an inspiration, said his father.

“Patrick has said, ‘Somehow, I know I’m going to come out on the other side of this. His attitude has been absolutely unbelievable. He’s never given any indication that he’s ready to give up.”