NURSE USING PATIENT FOR CHICAGO TRIATHLON INSPIRATION

Saturday, August 23, 2014

CHICAGO (WLS) --

A registered nurse says her patient, who cannot walk or talk, is motivating her to get healthy, lose weight and even participate in the 2014 Transamerica Chicago Triathlon on Sunday. 

Patrick Stein of north suburban Wilmette is making a life changing difference and his parents agree that he is one of a kind.

"He was the most social, friendly. I would call him the most Eddie Haskell salesmen I've ever met in my whole life and I love that about him," said Colleen Stein, Patrick's mother.

He recovered from a brain aneurism when he was 10 years old. He did not fare so well when he had another at 17 years old.

"The aneurism ruptured and he suffered a massive stroke and subsequently, he's in this condition, locked-in syndrome," said Nick Stein, Patrick's father.

With "locked in" syndrome, Patrick's brain is fully intact, but the former captain of his swim and water polo teams only has movement of his eyes. He communicates through a spellboard, looking up to indicate letters and spell out words.

Nurse Mary Jo Harte says the 21-year-old has no trouble making a point.

"I was just complaining about being overweight," she said. I've tried this. I've tried that. And he said to me, 'What are you complaining about? There are so many things you can do.' I also thought about it as there's just so much I can do compared to the choices he has."

Now, Harte is down 35 pounds and is training for her third triathlon coming up Sunday. She says during the toughest portions she will push through by relying on Patrick's encouraging words.

"All your strength and all your fear: it's in your head," she said.

Harte is using the triathlon as a way to raise money for Patrick's medical care. Costs run in excess of half-million dollars a year. 

For more information: http://www.allinmyhead.com/

Triathlons forge nurse-patient bond

Written by: Doug Williams

As a triathlete, Mary Jo Harte is a great comedian.

She's no Ironwoman. She'll never conquer Kona. She is 55, overweight and, until recently, hadn't been able to jump. When she tried, gravity just said, "No."

Three years ago, when she told her friend Patrick Stein that she'd decided to do a sprint triathlon in Chicago, he burst into laughter. When she texted him that summer 2012 to say she was riding her bike to his house, his response was, "OK, great. I'll keep my eye out for the ambulance on the side of the road."

She poked fun at herself, too. When she first tried to put on a sports bra, she wrote it was like losing a wrestling match with "a pink straitjacket." Yet Harte completed the Life Time Tri Chicago Triathlon that year.

She was 1,032nd out of 1,033 women, and it took her 4 hours, 10 minutes, 19 seconds to complete the 750-meter swim, 24.5K bike and 5K run -- almost three hours after the winning woman. Her swim was more like a paddle, she had to stop often on the bike, and there was no running on the run. Her goal was simply to finish without medical aid.

"That was like it, period," she says. "I wanted to finish it and hoped they wouldn't be closing it down before I crossed the finish line."

Last year she came back for more, finishing in 3:41:59. On Sunday (Aug. 24), she'll do the race again, with a goal of 3½ hours. Her trainer, JP Bordeleau, believes that's doable. Even if she falls short, he says she's an inspiration to others.

"I'm so proud of her," he says. "I mean, she has every excuse not to do it. She was almost 300 pounds. It's easy for her to say, 'I can't do it.' That to me is more motivating than watching an elite athlete, an Olympian."

Harte, however, has her own inspiration, and it's no joke.

"My story around this is not fascinating for very long," she says. "It's really Patrick's story."

The athlete and the nurse

Patrick Stein was an athletic kid. Though he'd had a brain aneurysm while in elementary school, he was cleared for noncontact sports. He excelled at baseball and swimming. By his senior year at Loyola Academy north of Chicago, he was captain of the swim and water polo teams. He was an intense competitor and a funny guy who knew how to motivate his teammates.

"He's one of the most competitive people I've ever met," says his mom, Colleen Stein. "He challenges everyone around him."

Patrick Stein was a standout athlete before being felled by a stroke. Courtesy Mary Jo Harte

But Patrick went to bed one night that senior year and woke up the next morning unable to move. A massive stroke left him paralyzed. He couldn't speak or even swallow. He could only move his eyes. His mind remained unaffected. Suddenly, the bright, competitive 18-year-old was trapped inside his body.

The name for his condition: Locked-in syndrome.

Patrick needed 24-hour care, including nurses and physical therapists. That's when he met Harte, who has been a nurse for 35 years. She's also dabbled in stand-up comedy and done some writing but decided years ago that nursing was her calling. She knew she couldn't stay up late trying to be "the next Ellen DeGeneres" and still get up early to go to work the next morning.

When she came to the Steins' home to be his nurse, she and Patrick quickly connected. While taking care of him, Harte would joke with Patrick, and he would laugh -- an involuntary action unimpeded by the stroke. He also communicated by blinking, which his family and nurses can translate into letters and words based on a spellboard.

"I think the humor bridged a lot of things," Harte says. "It allowed me to joke about things that might be uncomfortable. It allowed him to tease me about things, and he learned very quickly that if he teased me, I was fine. I laughed. It didn't hurt my feelings. I didn't feel disrespected. So I think we got to a trusting place through humor."

Colleen Stein calls their relationship "absolutely ridiculous," because of the love of laughter they share. Even during serious moments, she says the two will lock eyes and start to laugh.

"She is gay and married, and Patrick wrote a paper about 'I love my gay nurse,'" Colleen says. "It's the most hysterical paper you've ever read, saying they have a lot in common, that they both like women."

Harte even did a stand-up routine at a Chicago-area club at Patrick's prodding after he found out she'd done comedy.

"The only reason it came up was he asked me how I met my wife, and I said I met her doing stand-up comedy, and he burst out laughing," Harte says.

When she did the routine, Patrick was there that night, too, laughing at the jokes -- many of which were about their relationship.

The challenge

When she started working with Patrick, the 5-foot-2 Harte weighed 275 pounds. By the end of her workday, she had difficulty climbing the stairs to her bedroom. One day she was talking to Patrick about the difficulties she had to endure.

"I was complaining, just bitching, about, 'What am I going to do? I've tried everything. I've done this, la-la-la.' Just having a conversation," she says.

That's when Patrick started blinking at her. "There's so much you can do," he said.

Mary Jo Harte has managed to maintain her sense of humor during triathlon challenges. Courtesy Mary Jo Harte

Harte, who talked to Patrick later about it, says he meant two things.

"One is, there are 150 options for losing weight out there. Just pick one and do it and shut up," she says. "And there is also so much you can do because you are healthy. You can walk, you can talk, you can swallow, you can choose what to put in your mouth.

"He didn't say this, but that was the underlying message: 'I can't do any of those things. So just shut up and set a goal and do something about it.'"

So, Harte picked out a sprint triathlon that was eight months away, figuring it would give her time to work into it. She also decided to use it as a fundraiser for Patrick, whose in-home care costs approximately $500,000 per year. When she told Patrick she was considering a triathlon, he laughed (again).

"Patrick was absolutely, completely unsupportive," Harte says. "'There's no way you will ever do it.'"

Patrick says his first thoughts when she told him about her plan were, "I hope you have good health insurance. I did not think she would ever finish."

Harte began training by walking slowly on a treadmill. Then she started riding a recumbent bike and using a stair-step machine.

"If you look at your most basic workout, that's what I did," she says.

Despite her lack of fitness, she was determined to do the race because she was inspired by Patrick's spirit. He stayed upbeat, threw himself into physical training and was determined to get better. In his training, Patrick often focuses on moving his limbs. To an outsider, nothing's happening. But he always works at it.

"The only thing that's in his control is how hard he is going to try to do today the things that he can't do," she says. "And that's it. And I thought, 'Look at what I have in my life that I can control, and the choices I can make.'"

The races

For her first tri in 2012, Harte wore a navy blue T-shirt with "Just Doing It" in pink lettering. Friends and family wore matching shirts that year to cheer her on. Though she struggled, she heard the race announcers calling her name and saw the crowd cheering as she approached the finish.

"I was crying, like, 'Why are they making such a big deal about me when these Olympic athletes are flying by me?'" she says.

Patrick at the time was in Baltimore at the Kennedy Krieger Institute for therapy, but his mother was there.

Patrick Stein motivates Mary Jo Harte by needling her and with posters. Courtesy Mary Jo Harte

"The crowd went wild for her," Colleen recalls. "I've never seen anything like it. And she is the funniest person I've ever met. She goes, 'All you have to do is be obese and they love you in this thing!'"

Harte raised $10,000 for Patrick's care in that race.

Last year, Harte was much better in the transition areas, not wasting the time she did the year before. As she neared the end of the race, she spotted Patrick, Colleen and his father, Nick, with friends and family, all wearing the "Just Doing It" shirts, this time with green lettering. She veered off course and gave Patrick a hug and kiss.

"As soon as I came up to him, he just burst out laughing," she recalls. "He was smiling. I know he [came out] for me."

As Harte then headed toward the finish, Nick pushed Patrick in his wheelchair alongside her, before Harte took over. They crossed the line together. Scott Hutmacher, regional marketing manager for Life Time Athletic Events, which put on the race, heard the cheers as they approached and watched the finish. He says it was a moment "so impromptu that it was perfect."

"I'd almost say there wasn't a dry eye in the house," he says. "It was pretty powerful."

Patrick, however, won't admit to being impressed.

"I was shocked, and I wanted to take her blood pressure," he says of the moment. "I was too concerned about her to think about crossing the finish line."

Now comes her third race, and this time Harte is training more seriously under Bordeleau, an endurance athlete and owner of Precision Multisport in Chicago who often trains elite athletes. For four months she's been lifting weights, doing resistance work and taking on various torture machines and drills.

"She's such a hoot, because I'll have her do something and she'll look at me, 'I can't do that,'" Bordeleau says. "I say, 'Try it,' and she does it, and she's, 'Oh my god, get it on video!' We've videotaped her doing so many things she thought she would never do."

Just recently, she learned to stand up on her pedals while cycling. That alone should help her time in the race. In past races, she'd have to get off the bike because she lost feeling while sitting. Now she can keep pedaling.

"I have not been able to do that because I just have not had the strength to pull my big ass up and balance myself on the pedals," she says. "This is a huge help."

Patrick, however, continues to give her a hard time. "It is still not sure she will finish safely," he says.

The little things

Sunday's race in what is now called the Transamerica Chicago Triathlon will be different, too, because Harte won't be the only one running for Patrick. About 25 others will join her, all wearing T-shirts with the logo of "All In My Head," a documentary being made by filmmaker Colleen Shaw about Patrick's story.

Last year, Harte was able to raise less than $5,000 for Patrick's cause. This year, with the help of Shaw's website and running team, the amount could be significantly greater. Harte is no longer Patrick's nurse, but she remains his friend and health advocate. Colleen Stein says her son looks up to her, and she's intensely loyal to him.

"She's such an intelligent nurse, and we go to her for so many medical things," she says. "She's a very trustworthy confidante to Patrick."

Patrick remains Harte's inspiration.

"You're never too old, you're never too fat, you're never too inactive," she says. "You can always do something. That's what he said to me. 'There's so many things you can do.'"

As she has improved, so has he. His attitude in rehab is paying off. He has regained tiny movement in an arm and hand, opening the door for him to use a computer and a motorized wheelchair. He also is relearning how to swallow.

Harte says Patrick has taught her that small improvements are life-enriching. A whole world can open up for him with a computer, and her improved fitness makes her life better. Now 35 pounds lighter, she admits "no one's going to describe me as thin."

But she takes dance classes, can jump rope, walk up stairs, stand up on her pedals and -- just maybe -- shave an hour off her triathlon time.

"There's all these small steps that I really have learned to appreciate," she says. "And with my personality, telling me to be happy with small stuff is not very motivating. I like to make a big splash. I have a big body, a big personality, and this is the lesson I needed to learn and continue to learn. Those small things change the quality of your everyday life."

Patrick, meanwhile, has a friend for life. How does he describe her?

"Good," he says. "Entertaining. Trusting. She'll be here for the long haul."

And for a third triathlon.

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    2016 Giro d'Italia route presented at Milan Expo

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    • Associated Press

    MILAN -- Giro d'Italia officials have put together a balanced route for next year's race, which they hope will attract some of the best riders in the world.

    Organizers revealed the 21-stage route on Monday at a presentation at the Milan Expo in the presence of numerous cyclists, including reigning champion Alberto Contador, new world champion Peter Sagan and former winners Vincenzo Nibali and Ivan Basso -- who announced his retirement from cycling.

    The route for the 2016 Giro includes four days in the high mountains and seven medium mountain stages. There are also seven legs for sprinters, two individual time trials and a team one.

    The 99th edition of the famous race will take the riders from Apeldoorn in the Netherlands to Turin, via the south of Italy, the Dolomites and the Alps -- where it also crosses over briefly into France -- over a total of 3,383 kilometers (2,102 miles) from May 6-29.

    "It's clear the Giro is becoming more and more global," UCI President Brian Cookson said. "I'm absolutely sure that, as always, next year's winner will be a complete rider with extraordinary talent."

    Giro organizers hope the route will tempt some of the big-name Grand Tour contenders to attempt a rare Giro-Tour de France double as Contador did last year. The Spaniard won the Giro but finished fifth in France. His Tinkoff-Saxo team revealed recently that Contador is targeting the Tour and the Spanish Vuelta next year in what is set to be his last in the sport.

    Nibali, who hasn't competed in the Giro since winning in 2013, could lead Astana at the race next year.

    "It looks like an intense edition," said the 30-year-old Italian, the day after winning his first Monument, Il Lombardia. "I like it. I feel the absence after two years. I am thinking of returning to the Giro, but it's still too early to make a decision.

    "The stage in the Dolomites is very dangerous, particular, tough. You could risk losing or winning the Giro. You can lose or win seconds or even minutes. Then in the last week you need to look to still gain a bit of time."

    The Giro kicks off with an 8.1-kilometer (5-mile) individual time trial around Apeldoorn on the Friday before two sprint stages and an early rest day -- one of three -- for the transfer to Italy. The race then continues on the southwest coast, before cutting inland and heading up toward the high mountains.

    The first of six mountain finishes comes on Stage 6 from Ponte to Roccaraso in the central Apennines.

    "It's important to take your opportunities," Contador said. "This year the fifth stage was like that and I got the maglia rosa. It also helps you understand the conditions of your opponents."

    The second individual time trial takes place on Stage 9 and features a hilly 40-kilometer (25-mile) route from Radda to Greve in Chianti -- the heart of the Tuscan red wine-making region -- which could split the general classification.

    Another key stage is the 14th leg, which has six classified climbs -- including the Passo Pordoi, the Passo Sella and the Passo Giau -- on the 210-kilometer (130.5-mile) route through the Dolomites from Alpago to Corvara.

    That is likely to be the so-called queen stage of the Giro, but there are two other stages which have been given the maximum difficulty rating of five stars -- the 19th and the 20th.

    As well as the lengthy stage through the Dolomites, there are five other days which stretch to more than 200 kilometers (124 miles), with the 18th stage from Muggio to Pinerolo topping out at 234 kilometers (145.4 miles).

    Locked-in syndrome leaves former athlete in complete muscle paralysis

    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 calledAll 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.”

    COLLEEN SHAW USES HER CAMERA TO DO WHAT NO DOCTORS OR MEDICAL MIRACLES HAVE BEEN ABLE TO DO — LET PATRICK STEIN TELL US ABOUT LIVING WITH LOCKED-IN SYNDROME

    By Barbara Mahany, Nurs ’79

    Colleen Shaw uses her camera to do what no doctors or medical miracles have been able to do — let Patrick Stein tell us about living with locked-in syndrome.

    Holed up in the editing nook of her New York apartment, fueled on endless glugs of stain-your-lips-red Powerade Zero and countless chunklets of Orbit gum, Colleen Shaw, Comm ’11, unspools frame after frame of the locked-in life of a 20-year-old kid who for the past three years hasn’t uttered a word, is just learning to swallow and likens his existence to “spending a long time in a freezer” — “minus the cold,” he is quick to add.

    BUT THE WORST PART, HE SAYS, IS THAT “NO ONE LISTENS” TO WHAT HE CAN’T SAY ALOUD ANYMORE. SHAW, A FILMMAKER, IS GIVING THE KID HIS VOICE AGAIN, MAKING HIM THE NARRATOR OF HIS OWN STORY.

    If all goes according to script, the world will hear Patrick Stein, a redhead Eddie Haskell of a kid now strapped in a wheelchair, spell out words with the blinks of his eyes — loudly, clearly and unmistakably — in All in My Head: The Patrick Stein Story, Shaw’s 30-minute documentary of his triumph over tragedy.

    Patrick was once the high-energy, hijinks-happy captain of his high school swim and water polo teams. That changed on 10-10-10, a date indelibly etched into the telling of his story. In the wee hours of that October Sunday, soon after returning home from his senior year homecoming dance, Patrick woke with a killer headache. He made it to his mother’s bedside and told her they needed to get to the hospital.

    There, doctors pinpointed an aneurysm, a bulge that threatened to burst in the artery flowing through his brainstem. Fifteen hours into a 22-hour surgery, just after the surgeons stepped away from the operating table to study an image on a screen and figure out how to untangle the tangled mess, the aneurysm ruptured. It bled for 45 minutes.

    When Patrick woke from that life-or-death surgery, he was, as his father, Nick Stein, puts it, “in between,” a place no one had ever considered. Patrick was — and still is — paralyzed except for the ability to blink and shift his eyes up or down. (After three years of intensive physical therapy, he can wiggle a few fingers on his right hand and, with determined concentration, can lift his right forearm a few inches off the armrest of his wheelchair.)

    It was within the week of his waking that everyone realized Patrick had full cognitive powers — though he couldn’t utter a sound, swallow or nod his head. In time, everyone realized he could still make them laugh. Soon, he could blink a full armament of four-letter expletives. Eventually, he would be able to dictate 1,000-word college papers. Some of them were funny enough to take to the stand-up comedy stage, which his beloved nurse, Mary Jo Harte, did to standing ovations.

    It’s called locked-in syndrome, and Patrick is its second-youngest known victim. The condition was most poignantly and poetically described in the book and movie The Diving Bell and the Butterfly by Jean-Dominique Bauby. Before Bauby suffered a massive stroke in 1995 that left him “locked in,” he was editor-in-chief of French Ellemagazine. Bauby composed his memoir one blink at a time, which is how Patrick now communicates.

    Patrick uses a color-coded SpellBoard on which the alphabet is arranged in five colored rows, each row beginning with a vowel. Letters are recited until Patrick shifts his left eye up to indicate “that’s the letter I want.” The letter is recorded. Assembling a string of blinked letters makes spelling even a four-letter word an exercise in slow-motion determination.

    THE SPELLBOARD

    In this outtake from the film, we learn how Patrick communicates.

    Shaw was halfway through a yearlong filmmaking boot camp at the New York Film Academy when she focused her lens on Patrick. Casting him as the narrator of the documentary was a profession of Shaw’s faith and a measure of her capacity to zoom in on her lead character’s essence.

    She was not willing to surrender to the greatest production challenge. “I want it to be his voice,” she stresses. “People are always talking about him. I was determined to get his voice into the film.”

    She did it with a filmmaker’s tool kit that is a curious mix of the cinematic and the futuristic. A GoPro camera, the tool skateboarders, ski bums and skydivers don to show off their daredevil stunts, is strapped to Patrick’s head. A DynaVox provides the speech-making wizardry that follows Patrick’s gaze across a word-generating computer screen to put sound to his silence. The heart of the documentary script flows from journal entries Patrick blinked to his trusted nurse during the past two years.

    “I’m a big fan of the inspirational and motivational story,” Shaw admits.

    She heard about Patrick’s aneurysm from her brother, Charlie, who was a water polo teammate and member of the tight inner circle of “Steiner” friends.

    Shaw’s broad-shouldered brother was among the kids frantically texting updates in those early awful hours that melted into a blur of days and weeks and months before Patrick was strong enough to leave the hospital and return to his suburban Chicago home, nearly a year after waking with the horrible headache.

    It was in spring 2012 that Shaw went to her — and Patrick’s — high school, Loyola Academy in Wilmette, a North Shore suburb of Chicago, to watch a Senior Night water polo match. There, she spotted the former team captain strapped in his wheelchair, parked on the swimming pool deck.

    WHERE IT ALL BEGAN

    In this clip, Shaw discusses her inspiration for creating for the film.

    Shaw, who played water polo in high school and college, couldn’t shake her gaze. She locked in on one unanswerable question: What would it be like to be trapped after being so physically capable?

    The moment she saw him at the side of that pool where both of them swam so many miles, “it opened my eyes to how incredible this kid is,” Shaw says. “We both spent hundreds if not thousands of hours in that pool, swimming and training and working hard and goofing off and getting in trouble and growing up, basically. To be young, to have felt on top of the world, going on recruiting trips as a college-bound athlete, and to have that taken away in a blink of the eye, literally. ...”

    Her voice trails off. It’s utterly unfathomable. You hear the unspoken truth in her silence.

    TAKING ON PATRICK’S STORY

    SShaw studied exercise science and advertising at Marquette before heading to film school. She had to plumb the depths of this drama and frame it with her lens. She’s a triathlete who has lugged around a video camera since she was in fifth grade, making music videos alone or with her gaggle of girlfriends.

    “Once I got my camera,” Shaw says, “I couldn’t put it down. I really liked capturing moments that wouldn’t be captured otherwise.”

    Shaw discovered another thing along the way. “The camera is almost a shield for me,” she says. “It’s almost like I’m not there. It’s a layer of protection when what’s in front of you is so extreme.”

    And, so, she was ready to take on Patrick’s story.

    She raised $15,858 in 30 days through a Kickstarter online crowd-funding campaign to cover film-production costs. She dreams of airing the film on ESPN and HBO to klieg light Patrick’s story and inspire a worldwide audience.

    “I was prepared to be sad, but that changed the minute I walked through the door,” Shaw says of her first visit to the Stein family home. Soon, she and Patrick were bantering back and forth like brother and sister, which is hardly surprising after capturing so many up-close and breath-taking moments with her camera.

    “The Stein family is rock solid,” she says.

    STEIN FAMILY STRENGTH

    In this clip, Shaw talks about the strength of Patrick's family.

    At the Stein house, Shaw says, you can count on a laugh every few seconds. She has the film to prove it. She and her crew — a director of photography and a sound and production assistant, both fellow students from the film academy — taped more than 75 hours of cinema verité with Patrick, rolling the camera from sunup to well past sundown for a week last summer. She returned to Patrick’s home in the fall to fill a few narrative holes, adding 20 hours to the film log. Then, she flew to New York, to her East Village apartment and a production lab in Battery Park, to dive into editing mode — cutting and splicing 30 extraordinary minutes of live footage.

    The frames tell the story: Patrick relearning to swallow, practicing with droplets of water. Patrick taking his first bite of food in three years, an Armenian diner sandwich he craved called “the Loretta,” with bacon, cheese and mayo slathered on a half loaf of grilled French bread. Patrick breathily uttering “Hi,” a single triumphant syllable. Patrick going to school. Patrick being slid into a swimming pool. Patrick visiting with friends who come and go to college. Patrick wisecracking. Patrick telling the unedited truth of how it feels to exist locked inside a floppy-limbed body that once powered through life.

    It’s that voice, most of all, that is the hallelujah thread of All in My Head: The Patrick Stein Story, the film that dares to put words back in Patrick’s soundtrack. Loud and clear — spelled out or spoken  — the film is pure Patrick. Just the way he and his filmmaker dreamed it could be.

    Be among the first people to see Shaw’s documentary at allinmyhead.com.

            UNDERSTANDING AN ANEURYSM

    “An aneurysm is the result of weakening of the wall of an arterial blood vessel,” explains Dr. William Cullinan, dean of the College of Health Sciences.

    Cullinan teaches residents in the Medical College of Wisconsin neurosurgery program and covers stroke syndromes, including the type that cause locked-in syndrome. “The weakened state of the vessel results in ballooning of the vessel wall,” he says. “While many times the process goes no further, some aneurysms rupture or burst. If the blood vessel containing the ruptured aneurysm is one that supplies brain tissue, the resultant bleeding deprives that brain region of oxygen and nutrients required for tissue survival. This is a type of hemorrhagic stroke that can cause massive damage (or very little) depending upon location, vessel size and extent.”

    Cullinan says the critical issue is location. “The stroke that causes locked-in syndrome occurs at a critical place in the brainstem called the ventral pons in such a way that it destroys all descending motor axons, including those that stimulate the cranial nerves that allow speech, as well as the sixth cranial nerve, which allows an individual to move eyes laterally. Victims communicate solely by moving their eyes in the vertical plane.”

    Aneurysms can be treated if detected. Treatment, Cullinan says, can involve clipping or coiling, two very different procedures that try to prevent aneurysm rupture.

    Wisecracks bond a paralyzed 20-year-old and a no-nonsense nurse

    'It's beyond a nurse/patient relationship. It's a friendship.'

    August 17, 2013|By Barbara Brotman, Chicago Tribune reporter

    There wouldn't seem to be anything funny about Patrick Stein's situation.

    The 20-year-old from Northfield, former captain of the Loyola Academy swim and waterpolo teams, suffered a brain aneurysm in 2010 that ruptured during surgery to repair it. The bleeding caused a massive stroke at his brain stem, and left him with locked-in syndrome — a near-total paralysis.

    He needs full-time nursing care, and had to fight to keep state payments to cover it.

    He can't speak or swallow. All he can move are his eyeballs and eyelids, and to a small extent one finger and one side of his face. He communicates by spelling out words with his eyes, moving them up to confirm letters read out loud from a specially designed alphabet board.

    His mental faculties and his sardonic sense of humor, however, are intact. Which gives him one thing in common with Mary Jo Harte.

    Harte became Stein's nurse three years ago. They make an unlikely pair.

    He is a college-age North Shore jock, albeit a sidelined one; she is a middle-aged nurse, a gay woman with a brash manner who struggles with her weight.

    But they both like a good laugh. And they have become wisecracking buddies, joking in person and by texts, his dictated using the spell board.

    The gay woman often plays straight man. Like the time Harte was repeating some advice about rehabilitation that Stein had been refusing to take. She thought she was finally making headway. To her delight, he started blinking, indicating that he wanted to talk.

    She took out the spell board and starting reading out letters, with Stein looking up every time she got to the one he wanted.

    F.

    U.

    By the time he got to "C," she got the picture. She laughed, even though "like an idiot, I'm writing it all down."

    And all the times she has accidentally bumped her chest into Stein's face?

    That has become one of their running jokes and comedic material for Harte, who performed stand-up comedy when she lived in California. She used her adventures caring for Stein in a performance at a Glenview comedy club last year before a crowd that included Stein and his friends and family.

    She told of one of his joking emails asking her to send him a photo of her cleavage, and ended her act by taking out a cellphone and pointing it at her chest.

    "There you go, precious," she told him as the audience cheered.

    But even with a really funny nurse, and though Stein is fiercely positive and brooks no pity, there is no avoiding the reality of his situation.

    With his mother, Colleen Stein, reading out letters from the board, he spelled it out.

    IT SUX.

    "That's not how you spell 'sucks,'" his mother objected.

    Ignoring her, he continued.

    BUT I PUT UP WITH IT.

    He is the same person inside his head, he said, but being paralyzed is like being trapped inside a freezer.

    Last December, the Steins were told that because Patrick's tracheotomy tube had been removed in October, he no longer was considered technology-dependent enough to be eligible for the Medicaid waiver program that covers in-home nursing care for medically fragile children regardless of their parents' income.

    The Steins filed suit challenging the decision, arguing that although the tube had been removed, Patrick still had the tracheotomy — the hole into his trachea — and so should still be eligible.

    Harte, who segued from nurse to friend and advocate in September because she no was longer able to manage the physical demands of his care, started an online petition drive at change.org that garnered more than 105,000 signatures.

    Stein's plight prompted Gov. Pat Quinn, who learned about it from a TV news report, to reverse the decision in July.

    "Clearly it was a unique situation, and the governor directed his staff immediately to get to work reviewing the facts of the case and seeing what could be done to help him," said Quinn spokeswoman Brooke Anderson.

    The reversal ensured that the state will continue to pay for Stein's nursing even after he turns 21 in December. A class-action suit settled last month established that the state no longer can reduce funding to medically fragile children when they turn 21 and age out of the children's waiver program. Payments are to be based on medical necessity, not age.

    The family withdrew its lawsuit.

    On Aug. 25, Harte will participate — she thinks "compete" is overstating the case for a 262-pound woman who hates exercise — in the Life Time Tri Chicago triathlon as a fundraiser for Stein, as she did last year. She will do the sprint, which covers half the distances of theinternational event. Last year, she came in next to last.

    She pokes fun at herself in her blog, and Stein has joined in.

    But he was the one who inspired her to do it. She was complaining to him about being unable to lose weight, and he was having none of it.

    There are so many things you can do, he spelled.

    Compared to him, she asked?

    He looked up, meaning, "Yes."

    She signed up for the triathlon.

    Patrick gets his friends and family — the Steins also have two daughters — laughing as well as his nurse. "I've never been at that house where there wasn't laughter. Never, ever," Harte said.

    "If you didn't laugh, you'd cry," said Nick Stein, a builder.

    "Almost everyone laughs when they're around Pat, or he gets them to," said Patrick Stein's friend Charlie Dowdle, 19, who grew up on the same block.

    But Stein's relationship with Harte is special. When they're together, "he laughs harder than you can imagine," said Colleen Stein, a real estate broker.

    "They laugh together; they cry together; they tease each other," said Patrick Stein'sdoctor, Dr. Philip Sheridan, a pulmonary and critical care specialist with NorthShore University HealthSystem. "It's beyond a nurse/patient relationship. It's a friendship, a bond of trust and honesty that's developed between the two of them."

    Through two years of intensive therapy and great effort, Sheridan said, Stein's condition has improved a little. "He is able to do some gestures; he can partially smile," the doctor said.

    Still, "the prognosis for total neurologic recovery is not good. And the further you go out with any neurological injury and not make a recovery, the more difficult it becomes.

    "I don't have a crystal ball," Sheridan said. "That's why he, his family, everyone thatsupports him, and especially Patrick himself, want to do anything and everything they can. ... He's not one to give up."

    "There are people who come out of this," Colleen Stein said. "We still have hope."

    And Stein and Harte have their friendship, and their shtick.

    Stein plans to be at the triathlon finish line and is sure Harte will cross it. But that hasn't stopped him from continuing to rib her about her athletic ability.

    When she texted him recently that she was heading over to his house on her bike, he responded that he would be watching for the ambulance.

    blbrotman@tribune.com

    Patrick Stein plays trick on nurse

    Mary Jo Harte, friend and former nurse of Patrick Stein, speaks about her funny experiences with the 20-year-old who has locked-in syndrome as the result of a massive brain stem stroke. WARNING: GRAPHIC LANGUAGE. For more video, visit http://chicagotribune.com/video, subscribe to this channel, or follow us @TribVideo.

    Breast Chronicles of Patrick Stein's nurse

    Mary Jo Harte, friend and former nurse of Patrick Stein, discusses her driving experiences with the 20-year-old who has locked-in syndrome as the result of a massive brain stem stroke. WARNING: GRAPHIC LANGUAGE. For more video, visit http://chicagotribune.com/video, subscribe to this channel, or follow us @TribVideo.

    Paralyzed 20-year-old wins continued health care coverage from state following online petition

    Online Staff Report

    NORTHFIELD, Ill. — The Illinois Department of Healthcare and Family Services has confirmed the state will continue to cover in-home nursing care for Patrick Stein, a 20-year-old with Locked-In Syndrome — a very rare condition that has left him completely paralyzed except for the ability to blink.

    The state was previously planning to stop Stein’s home nursing care today, July 16. But it reversed its decision after more than 105,000 people signed a petition on Change.org, started by Illinois nurse Mary Jo Harte, urging Illinois Gov. Pat Quinn (D) and Julie Hamos, director of Illinois’ Department of Healthcare and Family Services, to reconsider cutting Stein’s in-home nursing care.

    Patrick’s parents, Colleen and Nick Stein, feared their son would not survive long without the in-home nursing care. “We are so grateful to Change.org and all the tens of thousands of people who took time to learn about Patrick’s situation and sign the petition,” said Colleen Stein. “Thank you for giving our son a voice.”

    There are not words to adequately express our gratitude to Gov. Quinn,” said Mary Jo. “When you are dealing with a large state system and the inherent bureaucracy, you sometimes lose hope that an individual within that system ever really heard you. Gov. Quinn heard us. He listened to Patrick.”

    Mary Jo has cared for Patrick since he suffered a brain stem stroke at age 18 that resulted in Locked-In Syndrome. Currently, Patrick is cared for by a skilled nurse in his home, which is paid for by a State of Illinois waiver program operated through the Illinois Department of Healthcare and Family Services.

    When the tracheostomy tube Patrick used to breathe was removed, the State of Illinois informed the Stein family that the change would result in Patrick being ineligible for the waiver program. Mary Jo argued that Patrick’s condition and standard for care hadn’t changed, and that he still required expert support to survive in his fragile condition. As Patrick is not able to call out or trigger an alarm when he needs help, he is in need of constant skilled support. After reviewing the case, Gov. Quinn’s office agreed.

    It’s remarkable to see how thousands of people joined Mary Jo to be a voice for Patrick,” said Tim Newman, deputy campaign director at Change.org. “We’ve seen numerous petitions on Change.orgabout ensuring health coverage for those in need, and it’s exciting to see how people like Mary Jo are succeeding.”

    Posted July 16, 2013