Coping with PCS

 

Life with Post-Concussion Syndrome (PCS) is hard. Symptoms can get in the way of anything that requires you to use your brain: school, work, social life, and hobbies all find themselves on the back burner while the brain slowly heals. 

The outbreak of the Coronavirus has made recovering from PCS even more difficult. In an age of social distancing, those who are experiencing lingering symptoms from a concussion may feel the changes to daily life more than most. Perhaps the medical services in your area are becoming overwhelmed and you're not sure if you can get your normal treatment. Perhaps the social distancing protocols are making an already isolating recovery feel even more isolating. Perhaps you're feeling heightened anxiety and stress. We want you to know we're here for you. Check out our webinar below featuring medical experts and PCS Survivors designed to help you or your loved one manage PCS in the time of Coronavirus.

Here are some more tips about how to cope with PCS, from those of us that have been there. 

Trust yourself: PCS is real.

Not everyone is aware of Post-Concussion Syndrome – even some doctors don’t know that concussions can linger for so long. But rest assured, this is a real thing that happens to real people. The first step to recovery, after all, is admitting there is a problem. Don’t listen to the haters.

Settle in for the long haul.

PCS doesn’t get better tomorrow, but it does get better. Timelines for PCS are usually counted in weeks and months, not days. Along that timeline you will have good days and bad days, and often times you will make a big improvement, then plateau, and maybe even take steps backwards. Don't worry about it – eventually, the bad days will become the exception, not the rule. Try to take things day by day (even though it’s hard!), and remember that you can have a bad day, or even a bad week, and still be on the right track to recovery. The video below features two teenagers, Noah Bond and Esther Lovett, whose inspiring stories of recovery from PCS ill remind you that while the journey may be long, there is hope. 

Parents: If your child is suffering from PCS, be their advocate

Parents, you can make a world of difference in the way you help your child suffering from Post-Concussion Syndrome. You can help manage physical symptoms like headaches and nausea, but you also play a crucial role in helping your child deal with the emotional and social hardship of having an invisible injury. As a parent, you know your child better than anyone and can help fight for them when they can't do it themselves. Whether it's working with their school to set up accommodations, not pressuring them to return to sports too soon, or simply believing them when they say they are struggling, your support can make all the difference. 

CLF has hosted two webinars led by CEO Chris Nowinski, Ph.D. featuring parents whose children have experienced PCS. In Part 1, our PCS parents shared strategies on topics like:

  • How to be an advocate for your child at school, in sports and with doctors
  • Helping your child cope with the emotional element of the injury
  • Preparing for the impact the injury can have on the whole family
  • Building a support team, and realizing you can't do it alone as a parent

In Part 2, our PCS parents shared their tips on topics including:

  • Setting and sticking to a routine for your child
  • Navigating the uncertainty and setbacks of the injury
  • Providing support for your child's fluctuating emotions and personality
  • Treatment options for your child struggling with PCS

No one knows your child as well as you do. In our next PCS Resources video, the Lovett and Bond families share what they learned about concussion advocacy through their children's experiences with PCS. Also, hear from Concussion Legacy Foundation medical director Dr. Robert Cantu on the role parents can play in their child's recovery.

 

Find a strategy that helps you manage your symptoms.

Every case of Post-Concussion Syndrome is different, and what works for some won’t work for all. Find something that works for you, and stick to it. Be sure to keep trying new things, even after other strategies don't work. It's hard to know what will work until you try! Here are some things that have helped other PCS patients stay on the right track.

Esther Lovett PCS
Esther Lovett has a blog chronicling her battle with PCS. Take a look.

Esther changed her game.
Esther suffered a concussion that took her out of school for a year, and out of soccer forever. After a difficult retirement from the sport she loved, she turned to other sports to find another activity that she could focus on. Her new pursuits led to new friends, new opportunities, and a positive new outlook, despite her PCS. Watch Esther's story or read blog posts from Esther on losing the sport she loved, how you can spread awareness of PCS, what you don't want to hear while battling PCS, and adapting to daily life with PCS.

Noah Bond PCS
Noah Bond and Esther Lovett were the Resilience Award recipients at the 2017 Concussion Legacy Gala.

Noah has a buddy to confide in.
Noah from Hull, GA says that so much goes through your head while you’re living with PCS that it can feel overwhelming. A lot bothers you; you can feel hurt, depressed, not happy, anti-social. But you NEED to have someone you can talk to. Noah found that talking to someone about what is wrong and how he is feeling can help in unexpected, incredible ways. Holding in how you feel can push you to your limit and one day set you over the edge. Talking to someone can often allow the stress to roll off of you. Get a buddy and talk to them often! Watch Noah's story.

Gracie builds breaks and exercise into her routine.
Gracie from Memphis, TN struggled with headaches, nausea, light sensitivity, smell sensitivity, memory issues, and vision abnormalities. After a long road, her symptoms became more manageable. Despite all her progress, there are times when her symptoms still disrupt her daily life. To stay balanced, Gracie makes a point to exercise, even if it’s just a walk around the neighborhood, and she carves out time for her brain to rest, away from screens and strenuous use. Keeping a routine helps her avoid sitting around and fixating on her symptoms. Watch the video below to hear Gracie talk about staying balanced, and how she has approached her recovery during the COVID-19 pandemic.

James practices meditation.
James from Miami, FL played lacrosse through high school and suffered five documented concussions. One concussion led him to take a year off from school. Despite persistent migraines, memory and attention issues, and struggles with anxiety and depression, James went on to graduate from college and law school. In addition to eating well, exercising, and keeping a routine, James uses meditation to stay positive and focused through his recovery. Watch the video below to hear the advice James would give to people recovering from PCS. If you want to give meditation a try, let CLF Family Advisory Board member Dr. Shannon Albarelli lead you through a session.

Ally is prepared.
Ally from Massachusetts has been suffering from PCS for several years. She makes sure to never leave home without her Concussion Kit – a small bag filled with sunglasses for when things get too bright, ear plugs for when things get too loud, an eye mask in case she needs a nap, and extra note pads to help her remember appointments and other things she’s likely to forget. Read Ally's story.

Ally Crich PCS
Even if it's graduation day, Ally will have her Concussion Kit with her. Read more about Ally.

Quentin has an escape plan.
Quentin has been suffering from PCS for years, and he’s learned that he needs to have an escape plan to get out of social situations in case his symptoms get too intense. Working out his escape options before entering a situation gives him confidence to not worry about what will happen if his symptoms get worse, and makes for a quick exit so he can regain his composure when he needs to.

Scott is a nap ninja.
Scott from Scarsdale, NY has become an expert at grabbing some z’s when he needs to, especially in the afternoons when his symptoms tend to get worse. Finding a quiet place to lay down during his free periods and making a point to nap when he gets home helps keep his symptoms at bay, and gives him something to look forward to. Read Scott's story.

Scott Cohen Chris Nowinski
Scott, a nap ninja, with Concussion Legacy Foundation CEO Chris Nowinski, PhD. Read more about Scott.

Georgia knows what to expect.
The worst part for Georgia from Boston was not knowing when her symptoms were going to ruin her day, so she started keeping track of when her symptoms would appear and get worse. She realized that some symptoms would come and go no matter what she did, while others could be nipped in the bud with some quiet time. Knowing what to expect helps her be prepared for today, and watching her symptoms gradually improve as time passes keeps her optimistic about tomorrow.

If you are struggling with your PCS recovery or need guidance on how to choose the right doctor, please use the CLF HelpLine as a resource. When you fill out your information, our dedicated staff will mobilize the most effective resources for your individual needs.

Are there coping strategies that have helped you live better with PCS? Let us know at info@concussionfoundation.org.

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