INTRO: You’re listening to Seize Your Adventure, the podcast that shares stories of adventure and outdoor living with epilepsy.
[Calm, acoustic guitar music]
FRAN (over): Hello Adventurers, Fran Turauskis here and I’m back with what’s going to be a super-quick episode for you today. And it’s something that I have been meaning to address for a little while but I recently had an email come into my inbox that has reminded me about the subject.
[Music fades out]
The epilepsy and adventure crossover is such a niche area and because Seize Your Adventure is currently the only place dedicated to that crossover, I do get a lot of people contacting me. Most often it is people who have adventurous souls and lived and breathed their sports, and then they started having seizures and get given this diagnosis of ‘epilepsy’. I am honoured to be the one that these people speak to and I appreciate the trust it takes to reach out to me, and the hope that Seize Your Adventure can provide.
I do my best to merit that trust and I do as much research as I can, speak to as many people as possible.
But the question I get asked most is ‘can I do this sport with epilepsy?’ I know some of you listening have asked that question. And you’ll know that no matter what the sport is, even if it’s something I am very familiar with, my answer is always the same: “I cannot tell you”.
But I do promise, I will always do my best to try and help you decide for yourself. Quite often, my help is signposting you towards someone else with epilepsy who has more experience of that sport. Sometimes it is gleaning information from guidelines set out either by sports authorities or epilepsy groups. And sometimes, others send me something useful to share.
For about a year, I’ve been talking to a gentleman called Ian Johnston, who after being diagnosed with epilepsy at 48 stopped playing sport. Now I am going to be speaking to Ian in a future episode so I won't go into his story too much today. But Ian has been doing a masters degree, and he got in touch with me because his dissertation was looking into the relationship between epilepsy and sport. And now he’s coming to the end of this course, he recently sent me an email with some of the research he’s been doing and a very valuable resource from the International League Against Epilepsy or I - L - A - E. And I wish that I’d known about this sooner because it’s two tables that clearly lay out some guidelines around all kinds of sports, including some adventure sports. The first table is about seizure risk levels in sport and its label is categorization of sports by level of ‘Risk of injury or death for persons with epilepsy or for bystanders should a seizure occur during the event’. So obviously a lot of people want to get focused on the idea of ‘risk of injury or death’ here. But this is a table which goes into detail of three different groups of sports. Group One are sports with ‘no significant additional risk’. Group Two are sports with ‘moderate risk to the persons with epilepsy, but not to bystanders’. And Group Three sports are ‘high risk for people of epilepsy’, and for some of the sports, it could be high risk for bystanders as well.
Now the second table is about whether these sports are recommended by the type of seizure that someone has. So on one side, it has the three groups, so ‘no significant additional risk’, ‘moderate risk’ and ‘high risk’, and then it also has the type of seizure or the symptoms of the seizure. So if you have a single, unprovoked seizure, how much risk that would be, sleep-related seizures only, seizures with impaired awareness. And it also goes into things like if you're on medication withdrawal, or if you've had your epilepsy resolved - so no seizures for more than 10 years and you are off any epilepsy medication. Now, these tables are very clearly laid out on. There are a couple of things that made me particularly excited about them.
The first thing that made me excited was that there were a number of adventure sports on there, which are unusual enough that they don’t feature on most advice webpages. Things such as NHS or Epilepsy Action have advice on standard sports like swimming, running, cycling. But a lot of the other adventure sports are often left off. This table goes into more detail, so you have things like-- ‘dancing’ is on there. That's a ‘no significant additional risk’ sport. You have canoeing, archery, shooting, skating, snowboarding. They all fall into the ‘moderate risk’ category. And you have other sports, which we would call extreme, so things like climbing, diving. Solitary sailing is on there, and all of those ones fall into the group of ‘high risk for people with epilepsy’. Some of the sports there might also be dangerous for bystanders, for example, aviation or motor sports.
The second thing that made me happy when looking at these two tables was the fact that none of the sports fell into a category called ‘absolutely, no way, never uh-uh’, or something maybe a bit more scientific than that. The closest the advice gets to a ‘no’ is where it says, ‘generally barred but maybe considered with restrictions at neurologist’s discretion for sports posing no risk to bystanders’. And, there is still that caveat there ‘at the neurologist discretion’, so long as something isn’t posing a risk to anybody other than the person with epilepsy.
I recently went to speak to my neurology nurse for my six month catch-up and when we were talking, we obviously went into detail about how I was feeling, any symptoms. But we also talked about a number of things, including the hiking I did in Colorado and the ultra run, and we talked about staying safe, but also about the importance of quality of life.
If are having seizures and a neurologist says to you, you shouldn’t do a sport, you should absolutely listen to them and talk about the reasons why they are advising against it. But if you love skiing, climbing, hiking, surfing, running, whatever it is you love, don’t be afraid to make them listen to you as well. Ask them if there is discretion to be had. Work together, figure out compromises, and you can use resources like these tables from the I-L-A-E to come to a decision.
Those tables will be on the SYA website so do head to them for reference and obviously, you can refer to them when you're speaking to your neurologist.
That is for today so until next time, and my sign-off is very apt this time, Safe Adventures everyone.