This post is part of the Epilepsy Blog Relay™ which will run from June 1 to June 30, 2017. Follow along!
I recently had the opportunity to interview Dr. Sarah Collard, CPsychol, a Postdoctoral Research Fellow with the Faculty of Health and Social Sciences at Bournemouth University. Dr. Collard’s article on Epilepsy and Exercise is now available in the journal, Epilepsy and Behavior.
Living Well With Epilepsy: What is your connection to epilepsy?
Sarah Collard: I have it! Diagnosed at 19, I have focal seizures with impaired awareness (complex partial). My seizures have never been controlled and typically I have at least 15 seizures a month.
LWWE: Why epilepsy and exercise?
SC: Epilepsy and exercise is of interest to me as it has shaped who I am. Before I was diagnosed, I was a runner. I was quite a good runner and was ecstatic to be offered a place on the track and cross country teams at Villanova University. However, these weird black out moments continued (started when I was 17) and often occurred while running.
When diagnosed my freshman year, the new drugs took their toll on my body and I was so frustrated with this new barrier to my previously wonderful life. Eventually, as I would frequently have seizures on runs, my coach had me run only on the track or on the grass. A new fear of running developed and I was left upset and frustrated.
I had wonderful support from my family, friends, coach, and teammates, but I was so upset at this huge change in my life. In my constant search to try to get over the fear of running, I couldn’t find any answers to my problems. As luck would have it, I found a book on sport psychology and it felt like I found my calling! I found techniques to help me get over my fear as well as decrease my stress levels. After college, I went on to do a Master’s in sport and exercise psychology in London. Throughout this time, I was constantly looking for research showing people’s experiences exercising with epilepsy, but nothing. There were numbers- 25% are scared, 15% exercise alone, etc. However, I wanted to see someone like me out there! This constant searching eventually led me do research on my own experiences of running with epilepsy and then a PhD on the narratives of people with epilepsy exercising over one year.
One of my passions is to present the benefits of exercise for people with epilepsy. By putting people’s experiences out there, it helps others with epilepsy see that they are not alone and perhaps they could learn new ways of exercising safely and confidently.
LWWE: What are some barriers that prevent people with epilepsy from exercising?
SC: Common barriers to exercise are the fear of triggering a seizure, no one to exercise with, and incorrect advice from friends, family members, and even neurologists. Medication side effects also caused some to feel too tired to exercise. However, if they managed to exercise, they felt physically and mentally better.
LWWE: Is confidence a barrier?
SC: Confidence to exercise alone and at certain times can be a barrier. Confidence to disclose epilepsy to a safety official could also be a barrier and a safety hazard.
LWWE: What has your research shown about people with epilepsy and their psychological and physical well being?
SC: People with epilepsy psychologically and physically benefit from exercise. It allows people to recover faster from seizures as well as keep them away! For those who have intense exercise or overheating as a trigger, they still are able to exercise and have learned ways of adapting their exercise routine.
LWWE: Why is it important to have research (data) on this topic?
SC: It is important as this provides new insight into why people may not exercise, but also how people are adapting and continuing to exercise. It also shows that stigma can be a barrier to exercise. The lack of knowledge about the condition continues and makes people with epilepsy not want to disclose their epilepsy as well as frustration at being treated differently if they do.
LWWE: Where can we find more of your articles?
SC: My articles can be found in these journals:
- Qualitative Research in Sport, Exercise and Health
- Psychology of Sport and Exercise
- Epilepsy & Behavior
Here are a few titles to look for:
Scarfe (maiden name), S. & Marlow, C. (2015). Overcoming the Fear: An Autoethnographic Narrative of a Runner with Epilepsy. Qualitative Research in Sport, Exercise, and Heath, 75 (5), 688-697.
Collard, S.S. & Marlow, C. (2016). “It’s such a vicious cycle”: Narrative accounts of the sportsperson with epilepsy. Psychology of Sport and Exercise, 24, 56-64.
Collard, S.S. & Marlow, C. (2016). The psychosocial impact of exercising with epilepsy: A narrative analysis. Epilepsy and Behavior, 61, 199-205.
Collard, S.S & Ellis-Hill, C. (2017) How do you exercise with epilepsy? Insights into the barriers and adaptations to successfully exercise with epilepsy. Epilepsy & Behavior, 70, 66-71.
LWWE: How do you hope to take this research to the next level?
SC: I am aiming to develop this further by making a more personal impact through health development programmes and promotion of the benefits of exercise. Also, I would like to decrease stigma for people with epilepsy, particularly within a sport and exercise setting.
Thank you to Dr. Collard for taking the time to speak with Living Well With Epilepsy. I encourage you to read Dr. Collard’s article on Epilepsy and Exercise.