If you’ve been following along with my blog the last week, you may have read my two very lengthy articles; “All Lit Up Redux” and “Seizures & Epilepsy – Dispelling Myths” regarding epilepsy and bike light research. You may also be familiar with the original BikePortland article which spurred my interest to compile this data all into one spot. It was something that I wanted to do for a long time, and at one time I had a file cabinet full of amazing stats, figures and studies on lights, helmets, bike lane and all those kinds of bicycle transportation planning goodies. If this cabinet still exists, it’s about 800 miles away and no longer accessible to me.

Such is life.

After some tweets (seriously, don’t quote me on this, but I’m pretty certain the topic came to fruition through Twitter) an email came through asking if I would be available to be a guest on BikePortland’s July podcast.

Umm yeah.

Even though I felt uber prepared after all the recent research, it’s still nerve-wracking and anxiety-inducing to be recorded for me. So of course it’s something that I want to push myself to do. I do really well in written interviews or highly edited format and have a history of sounding like an idiot on badly edited or unedited footage. (Not going to provide you direct fodder, but there’s some interesting stuff over at my Article archive if you want to peruse that.)

So it happened. I felt that it went pretty well. What I liked about the experience is that it didn’t feel like I was at a job interview or doing a presentation. It was three people that I have been friends with for years and we were all sitting around talking about things that we talk about pretty much every day all the time.

I mean, yes – there was structure to it. And thankfully some of my flubs were edited out.

To all the fans of my vagal nerve stimulator: (I know you’re out there!) If you listen at 17:47, it’s hardly noticeable unless you’re used to hearing it, but there’s a warble to my voice. THAT IS MY VNS DEVICE ACTIVATING! Kind of sounds like I need water or am talking into a fan, doesn’t it? If I hadn’t pointed it out, no one would notice, I’m sure. But this is the kind of blog where it makes sense to mention it.

I did say something in error at about 16:24 in the podcast. I corrected my mistake in the comments, but I want to apologize and correct it again. I said that 10% of people in the United States are afflicted with epilepsy. That would majorly suck and the already long waits to see neurologists (sometimes 6 – 8 weeks even for established patients) would quadruple. What I meant to say was that 10% of people in the United States will experience a seizure sometime during their lives. I apologize for bungling terms when I just wrote an article differentiating them!

Doh!

Then I went on to say 2 – 4% of those with epilepsy have photosensitive epilepsy. That number is actually 3 – 5%! I really botched the most important part of my guest appearance! No one called me out on that point.

Maybe because no one cares to point out when the stats are actually higher and more detrimental to safety. 

Also in the last week while I was writing the other articles and doing the podcast, I have received several personal emails and comments through my Contact Page from other cyclists with epilepsy or that have family members and friends with photosensitive disorders. Thank you for sharing your personal stories with me and I look forward to speaking more with you in the future. Maybe a guest profile feature in the future!?

More tidbits I found but wasn’t able to fit anywhere in other articles, though seems topical here:

• Epilepsy accounts for 0.5% of the global burden of disease, a time-based measure that combines years of life lost due to premature mortality and time lived in states of less than full health. Epilepsy has significant economic implications in terms of health-care needs, premature death and lost work productivity. (source)
• At any one point in time, between 2.2 and 3 million people are treated for epilepsy and it’s the 4th most common neurological condition that affects more than 65 million people worldwide. (source)

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