BLOG: Social media series aids patients with post-concussion syndrome
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Throughout my youth, competitive swimming and soccer careers, I experienced a few concussions but recovered from them quickly. When I hit my head on a countertop at home as an adult, however, I had a very different experience.
I didn’t realize at the time that cognitive exertion could be just as problematic as physical activity in the aftermath of a concussion. Trying to go back to work at my fast-paced, high-stress job as a television news producer landed me in the hospital. I was suffering from post-concussion syndrome (PCS), with symptoms that included headache, nausea, fatigue, speech difficulties, exercise intolerance, anxiety, extreme light sensitivity, and double and blurred vision.
I was never able to return to my television producer job, but I found an even better career in my current role with the Concussion Legacy Foundation (CLF), whose mission is, in part, to support athletes, veterans and all those affected by concussions and chronic traumatic encephalopathy (CTE).
One of my roles at CLF is to host the PCS Recovery Corner on Instagram TV (IGTV). An upcoming episode will feature Neuro-Optometric Rehabilitation Association (NORA) Board member Tanya Polec, OD, FCOVD, FNORA. The episodes are short (about 15 minutes) and can be played as audio-only for patients who have difficulty with visual stimuli.
I’m grateful that I can use an experience that changed my life forever to help others who are experiencing something similar. It is so important for PCS patients to know they are not alone. There are people who understand their symptoms, and — most importantly—there is hope for recovery.
Although I had produced a documentary on concussions, until I had PCS, I still didn’t understand how long-lasting and serious this condition can be, and I suspect many health care providers don’t either. Here’s my advice for anyone seeing patients who are complaining of visual symptoms that can’t be explained as simple refractive error:
Ask about any history of a concussion or head trauma, particularly if the patient is struggling with double vision or eye tracking problems. In addition to sports, people suffer concussions in falls, car accidents, domestic violence, military operations and many other settings.
Realize the patient may need interdisciplinary care. While treatment with prism lenses has been essential in my recovery, the reality is that PCS sufferers often need support in multiple areas, including cognitive therapy, physical therapy and mental health support.
Consider what free, educational resources you can recommend to patients, like those available from NORA and from the CLF. In addition to the IGTV series, CLF offers the CLF HelpLine, which provides individualized care to PCS or suspected CTE patients and families. Through its mentorship program, the HelpLine connects patients, parents and caregivers with others who have struggled with brain injury symptoms and can offer support and encouragement throughout the recovery process.
Advise patients that increased stress can significantly elevate symptoms, as can highly stimulating environments, like a shopping mall (or newsroom). Unfortunately, many PCS sufferers have struggled to manage their symptoms during the ongoing COVID-19 pandemic.
For more information:
Julia Manning is the communications manager for the CLF and hosts CLF’s IGTV series, PCS Recovery Corner. She joined the CLF team in September 2018 after spending 6 years in broadcast journalism. Throughout her career, Julia has won four Emmy Awards, including one for her work on a documentary on concussions titled “Impact: CTE, concussions and the fight to save football.”
The first season of PCS Recovery Corner, consisting of eight conversational episodes covering such topics as sleep issues, vision and coping with loss of identify after brain injury, can be found on Instagram at the handle @ConcussionFoundation. Follow CLF on Instagram to get updates in your feed or click on the television icon at the top of the page to go directly to PCS Recovery and other IGTV series from CLF.
Disclaimer: The views and opinions expressed in this blog are those of the authors and do not necessarily reflect the official policy or position of the Neuro-Optometric Rehabilitation Association unless otherwise noted. This blog is for informational purposes only and is not a substitute for the professional medical advice of a physician. NORA does not recommend or endorse any specific tests, physicians, products or procedures. For more on our website and online content, click here.
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