Most of the snow from earlier in the week had melted, but it was still cold in this stretch of Connecticut. It was a sunny Thursday afternoon in early December 2016. Paige Decker chatted while sitting on a beige couch in her mother’s home office. Decker was all done teaching for the day, her dark hair up in a messy bun and feet propped up on a bench in front of her.
Her calm, laid-back demeanor belied how much her life has changed over the last three-plus years, not to mention the fact that she’d seen more than 50 healthcare professionals.
“A lot of good doctors failed me and a lot of them misdiagnosed me, but I think they all always had the right intentions and all genuinely wanted to help me,” the former Yale hockey player explains. Concussion evaluation and treatment, she argues, is what needs improvement. “My experience is a perfect example of that.”
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Decker tries to find the good in negative situations. Her concussion is no exception.
About a year ago, she started brainstorming with Josephine Pucci. Pucci, a member of the 2014 Olympic silver medal-winning United States women’s hockey team, has dealt with numerous concussions. The two teamed up with former Yale men’s hockey player Danny Otto to create the Headway Foundation.
The nonprofit’s focus is making the health of athletes’ brains a priority through promoting awareness, sharing information from concussion literature and working with experts to improve concussion-related polices and care. Headway Foundation went live in November, and, as the year was coming to an end, the organization was working on finalizing an event for early 2017 with hockey teams from the Eastern College Athletic Conference to promote a safer sports culture when it comes to concussions.
“I feel like I owe it to myself and to all the other people struggling out there to just try and make sure that nobody goes down the same path that I did,” Decker says. “I would not wish what I’ve been through upon my worst enemy.”
• • •
Decker grew up in New Preston, Conn. You might not have heard of the small village that calls the western part of the Nutmeg State home, but chances are you’ve heard of Gilmore Girls. The fictional television show that gave us Rory and Lorelai is based in the small, rural town of Washington. New Preston is one of Washington’s villages.
Growing up as the middle child, Decker was competitive and unafraid to try new things. By age 5, she was on the ice. She played on boys’ hockey teams until fifth or sixth grade, and realized in middle school that she wanted to play collegiately. Decker was a beanpole, but a fast skater. After starring at forward for Westminster School and winning MVP honors in addition to the Division I New England Prep School Ice Hockey Tournament in 2010 as a high school senior, Decker enrolled at Yale. There, she’d go on to tally four points in 87 games through her first three-plus seasons as a Bulldog.
Down four at home with about five minutes left in regulation against the University of Minnesota during Decker’s senior year, Yale’s women’s hockey team was looking for a late offensive spark.
Starting a breakout, a member of the Bulldogs’ defense skated out from behind her net toward the left hash marks and sent the puck up the ice. Decker darted into the neutral zone to collect the pass, but she never got the puck. Instead, she found herself lying face down on the ice.
“I just didn’t see it coming at all,” she says about the collision. Hitting is prohibited in women’s hockey, but that doesn’t mean the sport isn’t physical. Still, the crash near center ice was deemed illegal, resulting in a two-minute interference penalty to Minnesota. “To most bystanders, it could have just been a routine penalty, but, I mean for me, on the inside I was very shaken. It shook me to my core.”
Drawing attention to herself was the last thing Decker wanted, so, ears ringing, the forward got up and made her way to the bench. She was disoriented and the wind was knocked out of her.
“In my mind, I immediately said to myself, ‘She’ll never skate again,’” Diane Lash Decker, Paige’s mother says. Diane watched the game live at home on her computer. “It was such a violent hit that my heart just jumped out of my chest.”
Back at Ingalls Rink in New Haven, Conn., Diane’s daughter was in denial.
There’s four minutes left. I probably have one or two more shifts left in the game, so I’ll just suck it up.
A short while later, she was back on the ice.
Decker was in a fog as she tried to help kill off a portion of a penalty Yale took less than a minute after the interference call. She couldn’t see straight and her ears continued to ring. As the seconds slowly slipped away, Decker waived her stick around, trying to follow the puck.
Going into that game in late November 2013, Decker had never missed a practice or game at Yale. Sure she had been banged around over the years, but she says she’d never been diagnosed with a serious head injury before.
Decker couldn’t see straight after the game. Her head felt cluttered. She couldn’t process what her coaches said in the locker room. Decker knew something was wrong, that it just wasn’t a run-of-the-mill headache, but didn’t say anything. Instead, she thought resting would fix things.
She downed water before going to bed that night, believing it would help. Decker’s head pounded and pulsated as she laid in bed. That wasn’t all. It felt like lightning bolts were violently shooting down her spine. She had chills all over.
Decker felt terrible the next morning, but chalked it up to not sleeping or not getting enough water. Inside, she wrestled with whether or not she should tell someone about what was going on, and finally decided to tell a trainer that her neck was hurting. She kept quiet about her head, though.
Yale had a game that day. Not even 24 hours had passed since the hit. Decker suited up, her face blank as her linemates went through the usual pregame meeting.
“I couldn’t comprehend anything they were saying,” Decker remembers. Still, she told herself to push through and play, after all, Decker thought, she might be better in no time. Plus, there was a fear of what her teammates would think if she didn’t play. “I truly felt like me taking that extra caution was going to be viewed as weak.”
That’s not to say Decker wasn’t scared to play that Sunday.
The next morning was a team weightlifting session and on-ice practice. Decker participated in both, telling herself that she could rest Tuesday when the team had a day off. By the end of practice, her vision had gotten so bad that she couldn’t see while on the ice. She still had her headache, too. After practice, Decker talked to Yale’s men’s hockey trainer, but downplayed the situation. Go see a doctor, Decker says the trainer told her. However, Decker didn’t set up an appointment. The trainer did.
“If he didn’t push me to go see the doctor, I would’ve probably prolonged it a little more.”
Decker went to Yale Health the next evening. There, she was diagnosed with a concussion.
Concussions in sports have been a topic of serious discussion for years. In the United States, the light has arguably been shined the brightest on football. Head injury-related lawsuits have been filed against the NFL and even Pop Warner, the nonprofit that bills itself as the world’s largest youth football, cheer and dance organization. However, football hasn’t been the only sport researched. A study published in The American Journal of Sports Medicine looked at the occurrence of sports-related concussions at the college level in 25 NCAA sports from the 2009-2010 school year to the 2013-2014 school year. Data was collected and reviewed from the NCAA Injury Surveillance Program as well as calculated to determine national estimates. There were 1,670 reported sports-related concussions, with an estimate of 10,560 nationally each year. Of the 25 sports examined, women’s ice hockey had the third-largest concussion rate at 7.50 sports-related concussions per 10,000 athlete exposures – when an athlete takes part in a NCAA-sanctioned practice or competition. Only men’s wrestling, 10.92, and men’s ice hockey, 7.91, had more. The fourth-largest was men’s football, at 6.71.
According to Dr. Jeffrey Kutcher, national director of The Sports Neurology Clinic and an advisory board member for the Headway Foundation, the concussion-oriented 501(c)(3) nonprofit organization that Decker helped create, accurately diagnosing a concussion isn’t an open-and-shut case.
“One of the problems that we have in sports medicine and primary care medicine in general,” he says, “with athletes is that people don’t really think critically and comprehensively about the neurological things that could be going on.”
In other words, to accurately diagnose a concussion, a medical professional needs to consider all the potential things that could be triggering what appear to be concussion symptoms and then actually test for all of them.
“Having that level of clarity is sort of what’s been missing in a lot of the concussion conversations,” he argues.
What’s more, the effects of a concussion could fall under what he calls “normal human variance.” For example, dizziness could be caused by something else like physical exertion in hot weather. Another factor that plays into giving an accurate diagnosis is that concussion symptoms don’t necessarily appear immediately.
Then there’s whiplash. It, too, makes accurately diagnosing a possible concussion tricky. A neck injury could generate a headache. On the other hand, a concussion could generate neck pain.
Dr. Kutcher says medical professionals can’t perform concussion treatment with “a set of assumptions” in terms of how it’s supposed to be done. He adds that medical professionals need to remember symptoms don’t always mean one thing. Plus, circumstances change.
“You need to be very dynamic and understand brain function intimately to be able to really manage people appropriately,” he says. “There’s an art to it. There’s an adjustment to it. There’s an ability to read and react to patients and how they do.”
For post-concussion syndrome, Dr. Kutcher contends, a big issue when it comes to treatment is treating patients like they still have a brain injury. Post-concussion syndrome symptoms stem from the brain not being able to handle the natural human environment.
• • •
The healthcare professional Decker saw that Tuesday evening at Yale Health recommended cognitive rest. Decker thought it would last seven to 10 days.
“That was so sh---, that initial transition into cognitive rest,” Decker says. “You’re just told basically to lay in your room and rest, and that is so unnatural. That is the most unnatural thing that you can tell a human to do, especially someone in my situation who was used to the go-go-go mentality.”
She wanted to get back to her old life, but her post-concussion symptoms wouldn’t let her. After seven to 10 days of cognitive rest, Decker didn’t show any signs of improvement. She started to freak out around the two-week mark, and her mother brought her home from college.
Eventually, Decker started asking people around her and searching the internet for answers as to what was wrong and how she could get better. Unlike looking up how to recover from an injury like an ACL tear, her efforts went nowhere.
A trip out to Vancouver, British Columbia, to visit a healthcare professional during the first week of January 2014 provided what appeared to be a little clarity. There, Decker says a chiropractor told her she had a neck injury that was playing a role in some of her symptoms. While in Canada, Decker received therapy and some trigger point injections.
Aside from dressing in Yale’s home white for Senior Day on Feb. 22, 2014, the 5-foot-8 forward never rejoined her teammates on the ice. That day, Decker participated in the pregame festivities before fighting back tears while sitting on the Bulldogs’ bench one last time.
“It was devastating,” Decker says about her Yale hockey career coming to an end, adding she felt like she was losing a part of her identity and that she was an emotional wreck in January and February as the season inched closer to its finish. “It was the culmination of my entire athletic career, and I was just each day watching it slip away.”
• • •
After managing to graduate with her degree in American Studies that May despite her symptoms, Decker moved back in with her parents. June was spent lying in bed—she figured out earlier on that gravity somehow played into her headaches. Decker also tried treatment and continued to search for answers.
“It was really like night-and-day,” Colin Decker, now 19, says about how his older sister had changed from the happy person who was full of life prior to the concussion. “It was shocking to me. I was like, ‘Whoa, wait a minute this does not seem right at all,’ and it was quickly evident that something was seriously wrong.”
Decker landed a Boston-based job in private equity consulting, but before she started, she went to Atlanta for five days around the end of August to see a neurological chiropractor. There, she says she underwent testing and was incorrectly diagnosed as having Postural Orthostatic Tachycardia Syndrome (POTS). According to the National Institute of Neurological Disorders and Stroke, POTS is a disorder where a lack of blood returns to the heart after someone who was lying down stands up. It often causes lightheadedness or fainting and one’s heart to work harder.
POTS was playing into her post-concussion symptoms, Decker says she was told. To treat it, she says the specialist prescribed therapy and eye exercises. Decker could be better within a month, she remembers hearing. However, Decker adds she was informed that if she wasn’t better, her new job and everyday life wouldn’t make her condition worse.
The neurological chiropractor’s plan didn’t work.
Decker was excited about her new job and life in Boston. As her friends and family helped set up her two-bedroom walk-up apartment in Beacon Hill, Decker laid on a black leather couch. Her headache was just too much.
Looking back, Decker half-laughs before saying: “I should have known then that this wasn’t going to end well.”
The ringing in Decker’s ears didn’t go away. Her headache started to get worse. So did her vision. Decker lasted in Boston for just three-and-a-half months.
A nighttime flight to Atlanta and a new neurological chiropractor followed Decker’s last day of work. She says a chiropractor in Boston urged her to head back for treatment. By the time she arrived, her head felt like it weighed a ton. She could barely sit up. The result of the trip, Decker says, was another misdiagnosis.
Decker felt like she wasted time and thousands of dollars by returning to Atlanta. Trying to figure out her next move, she opted to go back to Vancouver, British Columbia, around the beginning of January 2015. There, Decker remembers being told by a chiropractor that her neck was in bad shape. The answer? A type of injection therapy called Prolotherapy.
Decker was desperate. It had been more than a year since the concussion, and things weren’t any better. She trusted the chiropractor. Plus, she had a friend who had been successfully treated with Prolotherapy. So, Decker got injected on the upper right side of her neck – the area that was deemed problematic – and went through some muscle tissue work.
“It was like magic,” she says about the Prolotherapy. “Pretty much instantaneously, my headache went away.”
What Decker didn’t understand was that the injected substance contained a numbing component.
After two more rounds of treatment, Decker returned to her parents’ house in New Preston. Within a few days, her symptoms were not only back, they were worse. Heat and rubbing her muscles didn’t help, so she says the chiropractor back in Canada told her to find someone local to administer more Prolotherapy.
Someone in Avon, Conn., looked Decker over. According to Decker, the local healthcare professional recommended shooting up her entire neck, 14 shots in one sitting, just in case. Nervous, Decker needed some convincing, but eventually agreed. The full-neck method wouldn’t make things worse, she says she was told. Decker adds that the healthcare professional also talked her into a spinal injection.
This time, Decker only got minor relief. Come back in a week or so for more, she says she was told.
The months that followed were the hardest Decker faced. Nothing worked no matter what she tried. She didn’t know if she’d ever recover from her symptoms and return to the life she loved. She had been so active before the concussion, but now she struggled just to get out of bed. Mentally, it was rock bottom.
“I didn’t understand what that word meant until this happened to me,” Decker says about ‘depression.’ “Saying ‘I wasn’t myself’ doesn’t even do it justice, and it really is difficult to fully express just how horrific that time in my life was. I was just so, so miserable in every way.”
Less than 48 hours after getting the injections in Avon, Decker started losing feeling in her arms. Soon, her shoulder started to hurt. The pain got worse when she wasn’t moving, which was an issue because Decker wanted to lay down due to her headache.
That same week, her hands started to tingle. Her shoulders and tops of her arms were in excruciating pain. She was scared. The pain and numbness were new. Decker tried to get ahold of the healthcare professional in Avon, but it was useless. Eventually, according to Decker, an assistant from the Avon office told her to try taking pain medication and icing her neck. If the ice didn’t work, try heat. The advice failed.
“The pain really quickly started to [go] from pain to a level of excruciating pain that I truly just didn’t know was possible,” Decker explains. “My arms just felt like they had just had hot molten lava poured on them—just all down my arms.”
Her neck and arms swelled that week, too. Decker says someone from the Avon office told her that her symptoms would calm down in a few days. Emergency room doctors didn’t know what exactly was going on, Decker remembers.
About a week after the injections in Avon, Decker saw another local chiropractor. After an adjustment or two, Decker’s body finally calmed down. Her headache remained.
Later that week, Decker took off for Boston. She still had her apartment in Beacon Hill, and needed to pick up some things. While out there, she was going to see yet another specialist. The trip was cut short, though, as her condition deteriorated. The morning after a sleepless first night in Boston, she blacked out in one of the apartment’s bedrooms, her feet dangling off the bed.
• • •
Back home in Connecticut, things only got worse.
Emergency room and primary care visits didn’t provide much assistance. Medication helped suppress some of her symptoms, but they soon came roaring back. Anxiety meds tried to calm Decker down.
“My anxiety went through the roof, like skyrocketed,” she says. “I actually thought I was dying.”
When things got really bad, Decker would curl up in the fetal position. Her parents talked about what it would be like if Decker never got better and had to live with them forever.
“That–you know, that was difficult,” Diane Lash Decker says with a sigh. “Because she went from being this awesome person to being this really, really sick person.”
A trip to Michigan followed after the Deckers reconnected with the family of former professional snowboarder Kevin Pearce in early April 2015. Pearce suffered a traumatic brain injury after being unable to land a trick while training for the 2010 Winter Olympics. He later met Decker while she was in Atlanta. It turns out, Pearce had a friend who had suffered a concussion and spoke glowingly about a program in Ann Arbor. There, Decker began to learn what was really going on. Her concussion was gone; however, she was still dealing with a structural whiplash injury in her neck that involved muscle tissue tears and muscle restriction. This caused nerve compression, producing post-concussion symptoms. The Prolotherapy injections made her vulnerable condition worse by triggering a severe response of her sympathetic nervous system.
Ongoing rehab started making life a little more doable. That spring, she worked on her mental health, too. One of the ways was by volunteering with a local prep school’s girls’ lacrosse team.
But by December, Decker’s progress was beginning to stall. She still couldn’t walk long distances. If she wasn’t coaching at the prep school – it was girls’ ice hockey season by then – or babysitting, Decker was in bed or camped out on the couch. Despite being on pain medication, she still hurt. Maybe another trip to see someone else was needed to get Decker back on track.
“I just couldn’t believe that after everything we’d been through that there would be something else to try that would work,” Decker’s mother, Diane, remembers. “I felt like we had done everything we could.”
Diane’s daughter won out. A trip north of the border to a place called MyoWorx happened just before Christmas. It changed everything.
There, Decker quickly found out that her neck’s range of motion was a fraction of what it should've been. She underwent electrical stimulation treatment, plus muscle strengthening and comprehensive, targeted stretching that focused on the muscles in Decker’s neck and upper back. The stretches were more thorough and physically demanding than the ones introduced to her in Michigan. At one point during the four-day trip, her headache completely disappeared. It returned a few seconds later, but those few pain-free moments – the first in more than two years since her concussion – were all Decker needed in order to know that she was finally turning the corner.
Things continued to improve in 2016. After being able to exercise again for the first time in more than two years, Decker started running in May. She’s since logged four half-marathons. Decker moved out of her parents’ house and returned to work, too, accepting a teaching position at The Gunnery, the nearby prep school she’d been coaching at. Then in October she started playing pick-up hockey – it’s since become part of her weekly routine.
Yet, as the holidays neared, life wasn’t perfect. Decker’s sympathetic nervous system was still hypersensitive. She frequently had chills all over her body. Other symptoms like her headache, bodily pain, vision and noise sensitivity still lingered; however, they were dramatically better. Thanks to stretching daily, she was able to alleviate almost everything.
Decker’s seen more than 50 healthcare professionals in the past three-plus years since the concussion. She’s had more than 200 appointments. Insurance has covered some things, but not everything. Decker wasn’t sure about what her actual out-of-pocket expenses were—they’ve added up since she graduated from Yale and what the school offers its athletes in terms of medical care—but guessed they were probably into the tens of thousands of dollars.
Will Decker’s symptoms ever go away? Will life ever fully return to normal? The 24-year-old didn’t know.
• • •
It was a Friday evening in the middle of February 2017. Decker had just wrapped up running her Gunnery girls through practice and now sat near the window in her on-campus apartment. Still in her navy half-zip Yale top and grey sweatpants, Decker recapped the concussion awareness event Headway Foundation did with the Eastern College Athletic Conference earlier in the month.
It was a big success. Twelve men’s and 12 women’s hockey teams participated. Pictures and videos were taken. Teams voiced support on social media. Approximately 600 players wore Headway stickers on their helmets during the two-day event.
The event coincided with the debut of Headway’s first professionally produced short film. Funded by donations and casted with locals, the roughly four-and-a-half-minute short film “New Tough” is about a youth hockey player who suffers a concussion and how he properly handles recovery.
“It is a tremendously difficult thing to do, to pull yourself out of a game, especially when the stakes are high,” Decker says. “It was tougher for me to pull myself out of a game and say I wasn’t okay than it was to keep playing with a brain injury, and it’s just because in sports there’s just a lot of pressure to be traditionally tough.”
Decker had dinner plans with her father, and she was running out of time. She still needed to get ready, but continued to chat. The conversation switched to a list of what was next for her fledgling nonprofit.
Speaking events at New York and New England high schools.
Another batch of care packages for concussion patients were going out in the mail the next day. Nicknamed “Brain Boxes,” each package consists of a T-shirt with “resilience” written on the back, a stress ball, sun glasses for light sensitivity, an eye mask to help with sleeping, stickers and a handwritten note to show support. Each box is valued around $25 to $30. Patients get them for free after some stuff is filled out on Headway’s website or when someone from the nonprofit comes across a person in need. After the next day’s round of shipments, about 25 packages in total will have been given out.
The nonprofit was also working on growing in size.
Figuring out how to make an impact in the advocacy world was a priority, too.
“We are not doctors,” Decker acknowledges. “But our personal experience has tremendous value because we’ve lived through this and we know firsthand what the flaws are in the system as it exists now.”