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MD Teens Turn to Online Support for Concussions

Maryland has 17 brain injury support groups that meet in-person throughout the state, but they often draw adult patients. None of the groups focus on student athletes who suffer from concussion, so teens are turning to online support.

Alicia Jensen. Courtesy of TheKnockoutProject.com.
Alicia Jensen. Courtesy of TheKnockoutProject.com.
By MAX BENNETT and RACHEL WALTHER
Capital News Service

Young athletes suffering from concussion symptoms are turning to online athlete injury support groups in the absence of more traditional face-to-face groups geared to their needs.

Teens such as Alicia Jensen. The 17-year-old ex-soccer player from Cherry Hill, N.J., said she spends time online, often speaking with unlikely confidants, such as a 41-year-old former BMX biker.

“Having someone who understands tell you it’s going to be okay means so much more than someone who doesn’t understand say it’s going to be okay,” said Jensen, who plans to attend Towson University this fall. “It’s so important.”

Jensen met former BMX biker Jay Fraga online and quickly became a regular visitor on The Knockout Project, the online athlete support group Fraga launched to address the mental and emotional aftermath of concussions such as depression, anxiety and memory loss. The project is one of a number of athlete concussion support groups that have popped up over the last few years — including Concussion Connection, MyHeadHurts and pinkconcussions.com — many started by athletes or caregivers with nowhere else to turn.

Former UCLA linebacker Patrick Larimore founded My Head Hurts after retiring from football after several concussions. “We can foster a supportive environment where we learn from each other and promote better solutions to treat brain trauma,” Larimore says on his site.

Maryland has 17 brain injury support groups that meet in-person throughout the state, according to the Brain Injury Association of Maryland. But they often draw adult patients, often focusing on various brain injuries including strokes and car accidents. None of the groups is directed at young people or athletes, said Alicia Cignatta, Brain Injury Association of Maryland outreach coordinator.

Formal youth concussion support groups don’t exist in Maryland because most patients only suffer from temporary symptoms lasting a few days, said Dr. Stacy Suskauer, director of brain injury and rehabilitation programs at the Kennedy Krieger Institute. Suskauer said it is good online groups exist for injured athletes in need, but she said there were no plans to start such a group at Krieger.

Jensen said she has suffered from blinding headaches, a lack of energy, dizziness and extreme depression since she was about 16, when she was injured on the soccer field. She said she is still adjusting to the loss of sports in her life, while dealing with symptoms that friends and family “just don’t understand.”

Samantha Sanderson, 27, of Dayton, Ohio, does understand. “Anxiety and depression are a part of the injury, and people don’t always talk about that part, because people don’t talk about mental illness,” she said. “We believe if you don’t treat the entire athlete, you aren’t going to get better.”

Sanderson is a co-founder of Concussion Connection, a site dedicated to athlete concussion survivors. She and co-founder Lauren Long, 27, of Oklahoma City, Okla., both suffer from ongoing concussion symptoms following soccer injuries.

Concussions cause numerous physical problems including headaches, dizziness and fatigue. But the CDC also associates depression, anxiety, irritability, memory problems, sensitivity to light, mental ‘fogginess’ and difficulty focusing with concussion injuries. The symptoms, which can be overwhelming to anyone, can take a greater toll on teens and young people who are still developing.

Fraga regularly tries to explain to young users that the bleak period immediately following a concussion won’t last forever, and life can improve even with permanent injuries. He said in his experience teens are especially at risk for depression and thoughts of suicide because they aren’t as cognizant of change as adults.

Jensen, who writes regularly on The Knockout Project, listens to teens similar to herself, who went from dreaming of college sports scholarships and prom to learning to tolerate blinding headaches through fourth period.

“I talk [online] to people every day who are my age,” Jensen said. “My role is to make teenagers know they’re not alone. I know the pressure of being a teenager in itself is a lot, then add concussions.”

About 2,000 unique users a week come to The Knockout Project looking to talk with fellow survivors or find support, Fraga said. The way most people find his site, he said, is by typing, “‘I’ve been diagnosed with a concussion, I’m bored. What can I do?”

Fraga created The Knockout Project in 2012 after his ninth and final concussion from BMX biking. After years of suffering physical, emotional and mental pain, the former athlete visited his doctor for a routine appointment and noticed the waiting room.

“I saw a handful of young kids starting at my daughter’s age [who] were there for the same thing,” Fraga wrote on his Facebook page about the moment he decided to create a support group. “I stopped in my tracks....They were there for the same thing. They were going through the same thing.”

Football and soccer, two sports with high high school concussion rates, are among the 15 discussion categories The Knockout Project offers. Users can post their stories and speak with similar survivors. The site offers a specific category to high school students as well.

Teens are common visitors of the site and often come from a place of desperation, Fraga said.

“I get emails from people who say, ‘I don’t know what to do anymore,’” he said. “‘I can’t deal with the pain anymore.’”

Threats of suicide are not unusual.

“It happens weekly,” Fraga said. “More people than I can count on my hands [of] teenagers who don’t want to be alive anymore.”

Fraga, Sanderson and Long all share their experiences recovering from concussions on their respective sites and give other athletes the opportunity to do the same and find hope.

“It’s encouraging to us that someone struggling is reaching out and looking for help,” Long said, referring to the site’s 2,500 individual monthly visitors. “Recovering from concussions is a very long and difficult road.”

Jensen said this support is crucial for dealing with life after debilitating concussions.

“The most important treatment in post-concussion syndrome is to have support, because it gets dark,” she said. “I always tell Jay [Fraga] it was fate we met, as cheesy as that sounds. If I hadn’t [found him online] that night, I might not be here today.”

Massachusetts, Minnesota, New Jersey and Pennsylvania are a few states that offer formal face-to-face concussion support groups for teens.

At least one medical provider is discussing starting groups for Maryland.

RightTime Medical, a provider with locations throughout Maryland, saw about 1,000 concussion cases last month, 40 percent of which were sports-related, said its CEO, Dr. Robert Graw. Of those patients, about half were under 18. RightTime hopes to pair with the Brain Injury Association of Maryland to form sports concussion support groups, said Chief Creative Office Amy Knappen.

“We’ve been bouncing the idea around. We are talking about how best to [run and facilitate a group],” said Dr. Anthony Doran, director of RightTime’s sports injury and concussion division.

Doran said giving concussion survivors a sense of inclusion makes their recovery easier, mentally, physically and emotionally. 

“When you do a support group, you see people at different stages of recovery,” he said. “I think it’s great when you find out, ‘Hey I’m not alone.’ ”

The group is far from reality, though. Doran and other coordinators are still discussing basics, such as where a group should meet and how to structure it.
Every athlete concussion-survivor spoken to agreed there was a need for formal concussion groups. Members of adult brain-injury groups can speak to the benefits the groups offer.

Andy Kapplin of Pikesville said he suffers from memory and emotional problems following a concussion he sustained after falling from a railing at work. He attended the Kernan Hospital Brain Injury Support Group for adult brain injury survivors in Baltimore for one of the first times this month.

Having access to people who are knowledgeable about concussion recovery and supportive of all facets of the injury — physical, mental and emotional–is a relief, he said.

“There are people out here that have been through this and are going through this, and if I didn’t know what to do I could always ask and get an answer,” he said. “It’s been a big help, and I feel its going to continue to be a big help.”
Teens are not so lucky.

“I would have killed to have someone who went through what I was going through the first few months of my concussion,” Jensen said. “It’s really scary.”
Chuck Burton June 21, 2014 at 10:11 AM
Emotional support can be as important as medical, and even financial support for all kinds of conditions. Traditional sources of treatment often largely ignore the mind-body connection during and after treatment to the detriment of the best outcomes.

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