One day in 1994, I went in for an MRI. I was having issues picking things up and navigating narrow spaces. I was a young, active, healthy college student and was very scared – if I was undergoing such a major test, there must be something very wrong! I remember that fear vividly, wondering how it might affect my future plans. Previously, the doc had diagnosed me with vertigo, but we felt that there was something else. And there was. The neuro told me I had SCA, but he didn’t really know anything about ataxia *sigh*.
My thought, my opinion only, is that he found SCA in a book or something, but he honestly didn’t know about ataxia or different types. From then on, I was labeled as having SCA. Why would subsequent doctors doubt that diagnosis or a fellow neurologist? He was an accomplished and a prominent guy – they had no reason to!
So, 27 years later, I did a genetic test. I had many of the common ataxia symptoms, but I wanted to pinpoint the type. So, when the neuro called me with the diagnosis, I was taken aback. Not because it was a terrible result but because it wasn’t SCA as I’d thought for over 25 years!
It was 2010, and I was searching on the web. I stumbled upon a group called the National Ataxia Foundation, and they were having a conference in Chicago. My mom lived in Chicagoland, so I visited her and was curious about NAF, other ataxians, friends and family, ataxia, … at that conference, and I was hooked. Then and at later conferences (I’ve been to 9 now!), I especially liked the Birds of a Feather breakouts, hearing about medical advances, and seeing friends.
Back home, I joined the Chesapeake Chapter (DC, MD, VA support group) and the Johns Hopkins Under-30 Group. I lived in Washington, DC for 13 years. I had a good government job and bought a condo there. I volunteered at a Smithsonian museum. Life was good! When I first moved there, I was walking unassisted. Then I had to use a cane. I fell a lot. I fell really bad on concrete stairs once and got to meet some EMTs. I fell another time (boy, the skull is strong!) and met some more EMTs. Last straw, I fell at work and knocked out 2 front teeth for $11,000 of workers comp. Enough! I had to file for disability.
I moved to be closer to family, to the Chicago area. There, I joined 2 more ataxia support groups. In 2016, I started to use a rollator. My cane just wasn’t cutting it anymore.
In 2017, I moved to St Louis. Again, I joined the local ataxia support group. Wait – there wasn’t one! What a shame – St Louis is home to lots of medical centers, hospitals, med schools, and medical knowledge. Surely there are others with ataxia in the area beside me. I came to the realization that I might just start a support group.
I’m overjoyed to say that we just celebrated the 4th anniversary of the founding of the St Louis Ataxia Support Group. We’ve had our ups and downs, but we’ve made friends and become a unit. We love new people too! I am happy to welcome anyone, hereditary ataxians, acquired ataxians, and friends and family. (Our members mostly live in MO or IL, but on Zoom, during the pandemic, we have several members from other areas!)
Over the years and from my experiences with various ataxia groups, I’ve learned a lot about ataxias. I’ve also learned the benefits of joining an ataxia support group. In addition to learning about medical research, we share info about participating in research studies. We explore local supports and resources to improve the lives of ataxians. Most importantly, it’s very comforting to see and interact with others with the same or similar issues as you. Many of us can feel isolated; “you are not alone!” Others in STL Ataxia understand and are more patient. Even though there is no cure, we can treat symptoms; in our meetings, we share our challenges, medications, activities, and what does and doesn’t work. We also work to increase awareness of ataxia for National Ataxia Awareness Day and International Ataxia Awareness Day.
It’s 2021, and the COVID-19 virus has changed our support group. Not totally good and not totally bad. We’ve been on Zoom and have missed 2 national conferences. However, I look forward to the day when we can see each other again and enjoy meetings and outings. I know that the time will come!
Thank you for sharing your story Shannon and let’s hope that face-to-face meetings will soon be the norm again!
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