Hi, I’m Meg, a 31 year old with a rare disease called Spinocerebellar Ataxia – Type 1. I used to be a high school English teacher, but now I’m a stay-at-home mom who’s sharing this next chapter of my life to promote SCA awareness through several different outlets! Since Ataxia affects each person differently – depending not just on the type, but the age of onset, progression rate, family history, other medical issues, current lifestyle, etc. – I’d like to share my story with you.
Basically, I had a completely normal life growing up: I was captain of my high school’s varsity gymnastics team, I participated in national cheerleading competitions, my family went on extensive vacations to various places each year, and I earned both a bachelor’s and master’s degree at a state university. But around age 20 I noticed I couldn’t run as well as I used to. And then walking in heels turned into more of a struggle than it naturally was. I’d sit in my car before work, waiting to go inside until I knew I was completely alone so no one would see me go up the stairs because it took me a long time and I’d get out of breath. When I coached, I’d have my gymnasts demonstrate drills that I could no longer do without losing my balance.
I knew what was happening, I had watched my dad go through the same thing.
You see, my dad had SCA. And my grandpa had it. And his dad, too. It’s a hereditary disease; children have a 50/50 shot of inheriting it, and then could pass it down even if they don’t show symptoms. I knew this. And I know there isn’t a cure. So I didn’t rush out to get a diagnosis; I just didn’t see the point. But in 2015 my dad died, and the stairs at my school’s graduation didn’t have railings so I had to awkwardly ask co-workers for help, and then my fiance and I were trying to buy a house and would’ve preferred a ranch but a 2-story would do for now, and I got denied entrance to a bar because the bouncer thought I was drunk because I couldn’t walk well.
So, I saw a specialist and was genetically tested and diagnosed with Spinocerebellar Ataxia Type 1 when I was 26. Right now, running and jumping are terms of the past; any movement requires my trusty wheelchair. Writing and other fine motor skills have gotten to be impossible. My shaky voice and slurred pronunciation make me difficult to understand. Brain fog sometimes causes confusion and difficulty concentrating. Plus, the fact that this disease is progressive adds another layer of surprise – I can do something one day that I can’t do the next. And I have no control over it and no premonition.
Yes, my symptoms are frustrating and tiring and debilitating. But here’s the thing – I have Ataxia; it is part of my life, but my world includes so much more. I’m married to my best friend – a man who has so far stayed true to his vow of pizza once a week and cross-country road trips every year. We have a perfect one-story house, a German Shepherd named Bogart, and the most awesomely supportive group of friends and family you could imagine. And – thanks to IVF and PGD – I gave birth to a healthy, Ataxia-free baby last year! Becoming a mom has granted me so many opportunities, including presenting at NAF’s Annual Ataxia Conference and founding the Parenting with Ataxia Facebook page/support group. Plus, I’m pretty sure I have the cutest son in the world.
I highly encourage visiting my blog to find a wide variety of posts, centered on living life to the fullest with Ataxia!
We would like to thank Megan for sharing this inspirational story with us. If you’d like to know more about her, be sure to follow her on her personal Facebook page and her Instagram profile @meg.mcnally. If you would also like to get involved and share your experience with Ataxia or another rare condition, please get into contact with us through our social media channels below.