Hi, my name is Andrew and I have a version of Autoimmune Encephalitis called Central Nervous System Vasculitis. I was first diagnosed with the broader AE in 2017, and more recently with the more specific CNSV. I’m running the Ironman 70.3 Victoria, BC at the end of May to raise awareness for AE.
According to the Encephalitis Society, 78% of the general public worldwide do not know what encephalitis is. In order to increase awareness, I have brainstormed various ways I could promote dialogue for this disease. Someone once told me the best way to raise awareness is to do something you know. I’ve run countless races to benefit various organizations throughout the years and thought this would be the perfect way for me to show support to this organization and the disease that affects many. Through working with Kimberley De Haseth at the Autoimmune Encephalitis Alliance, I was able to have printed their logo on my triathlon suit and started to write this blog series.
So why am I doing a triathlon? To answer that question, I have to give a little background. In the winter of 2019, my neurologist realized that the immunosuppressant pill I was taking to suppress my T-cells was not functioning as it should which, in turn, was not allowing me to taper off my steroid. The decision was made to put me on another treatment that would eliminate my B cells. B cells are cells that tell your T cells what infections/diseases to attack. When you suppress and destroy B cells, the information they carry gets taken in through the blood in your body. So if you don’t have T cells to fight, you could get very ill as your body would have to fight multiple diseases at the same time. To prepare for this transition, my neurologist told me that I needed to be in the best condition I could be in to help the new treatment work. When I asked what that meant, he said I needed to work out 6-7 days a week and eat a healthy diet. As a previous marathon runner, I knew that I didn’t want to run 6 days a week. I was actually sitting at a stoplight and in front of me was a cycling group. One of the members of the cycling group had the Ironman logo on his jersey. That got me thinking that could be something I could do as it would vary my training since there are three components to a race – swim, bike, run. I Google-searched “how long do you need to train for an easy triathlon” and found 12 weeks as the most common answer. As luck would have it, there was a race 12 weeks out, and thus began my training. After 2 weeks I had gotten into my groove and started a healthy habit that would continue from there. For my first triathlon, I did a Super Sprint that consists of 400m swim, 10km bike, and a 2.5km run. After finishing the race, I felt a deep sense of accomplishment realizing just how much I enjoyed the whole experience, not just the race itself, but also the process of training that had gotten me to that point. Since that first race I’ve done two others, a Sprint distance (750m, 20km bike, 5k run), and a relay version with my wife where I completed the swim and bike portion and she did the run.
In terms of how this is helping, it offers me time to just be alone and reflect on the frustrations that accompany the disease aiding in the healing process. In most triathlons, there are rules where you are not allowed to wear headphones. So that’s 2-7 hours (depending on race length) by yourself, with your own thoughts. For training, I try to do most sessions without headphones so I can prepare for the race itself. When I was first diagnosed I was overwhelmed with things that could happen. You hear stories about people diagnosed with AE who don’t survive or they get on medicine that helps, but this medicine can have severe side effects and potentially lead to other illnesses. My triathlon training allowed me time to deal with what is happening to me. Additionally, it has led to me developing healthier habits and a better sleep schedule. As I always say, in the bad there is always something good, you just have to look for it.
Please follow along with my journey, and thank you for reading and all of the support.
PS: I’m not a doctor or medical professional. I’m just a guy that has been dealing with a horrible disease for the past 3 years, and I want to raise awareness the best way I can. I write my own blog detailing my daily struggles and triumphs. Feel free to check it out at www.mylifewithae.com.
We, at AEA, want to thank Andrew for raising AE Awareness during Brain Awareness Week and giving us the opportunity to follow him on his journey to the Ironman 70.3 and beyond at www.mylifewithae.com.