BEST OF ASN | My name is Paige Decker: Ex-hockey player chronicles painful concussion recovery
[caption id="attachment_3237" align="alignright" width="150"] BEST OF ASN: With a new year approaching, we thought this would be a great time to look back on the stories that touched us in 2015. Some made us laugh, some cry. But all of them showcase what makes ASN your home for your teams, your passion.[/caption]
That is the opening paragraph to The Invisible Injury, a blog Paige Decker created in September to chronicle her ongoing struggles and recovery from her concussion nearly 700 days ago.
She wishes upon nobody her pain and post-concussion symptom struggles and urges all concussion sufferers to take charge of their own fate as best they can.
She knows firsthand that’s not easy.
The Centers for Disease Control and Prevention estimates between 1.6 million and 3.8 million concussions occur each year, making diagnosis and treatment the hot button for all sports. Suicides by NFL players Junior Seau, Andre Waters, Dave Duerson and Terry Long, to name a few, have also raised awareness over concussion treatment, prevention and long-term effects.
Decker, 23, is using her blog at to give a first-person perspective to what suffering and recovery is like. Her writing is poignant and heartfelt. You come away from the entries understanding that concussions can happen to anyone, whether the blow looks significant or not.
She is grateful that, finally, thanks to Dr. Jeffrey Kutcher and his fellow doctors at the University of Michigan’s NeuroSport program, her symptoms are becoming more manageable and measurable progress is being made.
She writes in her blog that all concussions are not created equal and not every body responds the same way. However, addressing symptoms is the key to recovery and the longer you wait, the longer recovery typically takes.
“I made mistakes,” she says in her chronicles. “I know that not everybody who gets a concussion goes into the rabbit hole that I did. But for cases like mine that are more complex and don’t resolve themselves, then that’s when a better system needs to be in place to give the patient better care.”
Decker’s Yale women’s hockey team was trailing 5-1 late in the third period when her life changed. For a long time, she didn’t know exactly what was wrong and hopelessly tried various treatments. As an athlete who never missed a practice, she tried to continue on with life as if nothing happened and refused to believe the concussion was still wreaking havoc.
The pain, however, kept getting worse and her feeling of emptiness grew.
In her blog Decker talks of denial and the helpless feeling of not knowing where to turn for help.
All told, she said she saw upward of 40 doctors, chiropractors, acupuncturists and other specialists. And she only got worse.
The first low point started about two months after she graduated from Yale. A member of the ECAC All-Academic team, she had accepted a well-paying position with a private equity firm in Boston. While life should have been good for a 21 year old with a job that carried a potential six-figure income, she was miserable because she could barely function.
She lasted two months before having to take the leave of absence she is currently on. Getting out of bed was a struggle at that time. Going to the supermarket and walking down the aisle with her mom? Forget it.
“I used to work out four to six hours a day at the rink,” Decker said. “Concussions can be debilitating. I’m proof of that.”
Compounding Decker’s recovery struggles was that in January she tried Prolotherapy, an injection treatment aimed at stimulating healing to damaged ligaments and joints. The injections, she said, brought on a form of RSD (Reflex Sympathetic Dystrophy Syndrome) that involves an excessive response to the sympathetic nervous system. It added symptoms ranging from excruciating bodily pain to involuntary twitching.
“It slowed her recovery,” said Dr. Kutcher, who has worked with the National Football League Players Association and its concussion protocol. “There is a lot of misunderstanding about concussions. Many concussions will fix themselves within a few weeks, but they can also trigger other problems. If you’re still dealing with symptoms two months after a concussion you’re not getting the right treatment.”
And that’s the point of Decker’s blog: If you’re not getting better, get help.
Today, she is down 20 pounds from her playing days at Yale, mostly muscle. She now celebrates the days when she walks pain free. Thanks to her treatment she no longer dreads getting out of bed.
“It may not sound like much but that is progress and it means I’m headed in the right direction,” Decker said. “The symptoms are there, but not as bad.”
Decker credits finally being on the road to recovery to being introduced to Kutcher and the NeuroSport program through a friend on the U.S. Snowboarding team.
Since May she has made three visits to the program in Ann Arbor, Mich., where she stays in a hotel for a week during treatment and returns home with a rehab to-do list. Insurance covers some of her expenses, her parents also help. She feels lucky, she said, and believes it is money well spent.
The key to NeuroSport’s success is collaboration. It brings together experts who specialize in concussions and neurological sports injuries.
Nine doctors, including Kutcher and two other neurologists, worked together to give Decker her diagnosis and recovery plan.
“Paige is on a journey and she is going to get better,” Kutcher said. “Someone who gets help if it has been two or three months will have a shorter recovery than if it has been two years. In Paige’s case it will take longer but she will recover.
“I’ve read her blog. It’s great to see a patient who has great insight share what is going on. It can be incredibly helpful for others who may have similar experiences.”
Last year, NeuroSport helped more than 3,000 patients from outside the university.
Decker said she finally feels there is a light at the end of the tunnel and she is thankful for the support the Yale medical staff and her team has offered along the way.
“I have nothing but good things to say about how Yale has supported me and tried to help me during my time there,” she said. “The doctors at Yale did the best they could with the resources they had available.”
Since her first blog Decker has written two more entries and taken to Twitter (@invisibleinjury) in an effort to bring more awareness to her cause.
“The CDC recently released a report stating the 69 percent of student athletes with possible concussions don’t report their symptoms,” Decker said. “What I want you to take away from my journey is do NOT play through your concussion symptoms. I hear that word (concussions) now on TV and it makes me nervous. They can be life changing.”
For more information:
• Follow Paige Decker’s recovery at The Invisible Injury concussion blog and on Twitter at @invisibleinjury
• For more on concussions, symptoms and statistics or to become a NeuroSport patient visit UofMhealth.org
Above photos: Dr. Miles Colwell works with Paige Decker. (Courtesy Leisa Thompson)