Mark Aguilera has always been a sporty guy, and still is! After he graduated, he was diagnosed with Ataxia, but the type was still unknown. Many years later, he finally learned that he has Ataxia with Ocular-motor Apraxia Type 2 (AOA2).
Growing up, I was pretty athletic. I played soccer, basketball, football, wrestling, and I also was also on the Swim Team. I loved the competition and the fun of it all.
But, as I grew up, things were getting to be more difficult. My skills decreased and my coordination was noticeably lacking. All this was pretty frustrating, and it ultimately led me to stop playing the sports I loved.
My symptoms were not all that bad, but I knew there was something wrong. I went to a handful of doctors to try to get answers, but they all seemed to brush off my concerns.
Shortly after I graduated, I went to a neurologist, and he diagnosed me with neuropathy. He could tell there was something else going on, but it was a mystery to him. So he set me to the Mayo Clinic in Minnesota, for a full neurological workup.
So, in 1997, my parents and I flew to the Mayo Clinic for a week. I was poked and prodded for several days but finally received some answers. My cerebellum had severe atrophy and my nerves were demyelinating (nerve damage). I had Ataxia. However, that diagnosis was not very specific. I had an unknown type of Ataxia, so there were new questions yet to be answered…
I came home depressed, and a little disappointed I did not receive all the answers I was looking for. However, I was determined to figure out the whole story of what was going on. After some “googling,” I decided to go to the neurological department at UCLA. For years and years, I did not receive any definitive answers. Then, in around 2013, I was finally diagnosed with having Ataxia with Ocular-motor Apraxia Type 2 (AOA2).
This journey was quite daunting, at times. I was scared, depressed, and uncertain about the future. The first ten years were probably the worst. Then, things totally changed!! In 2009, my son was born! My mindset and attitude were totally changed forever. I was responsible for another human being. I wasn’t about to let Ataxia stop me from being the best that I could be.
I began to be more proactive in managing my disease. I started to work out and become more active. I finally learned to accept my diagnosis- and even embrace it! I learned to laugh at myself and be patient. In some ways, I think being disabled has even made me a better Dad.
But, having Ataxia is hard! It’s so frustrating. I have good days, and I have bad days. Ataxia is always there to remind me, that my body can’t always do what I want it to do- but, that’s okay. I’ve become pretty good at adapting and evolving to my situation.
Currently, I work out at the gym, have physical therapy twice a week, and do Pilates on Fridays. I enjoy hanging out with family and friends, going to the movies, and watching TV. My son also mainly lives with me, so we go on a lot of fun adventures together!
At age 42, I have lived more than half of my life with the diagnosis of Ataxia. At the time of my diagnosis, I had very low expectations for my future. I didn’t believe I could actually have a useful and fulfilling life. But now, 24 years later, I’ve never been stronger (both, mentally and physically!)
So, if I was to offer any advice, I’d tell my fellow Ataxians to just keep moving and be as active as you can be! But most importantly, do what works, for you!!
We are happy to hear that you are feeling stronger than ever, keep up the good work Mark Aguilera!
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