Susan Stiles – Let Our Voices Be Heard

All my life I have been clumsy but didn’t know why. I kept falling down without a moment’s notice, but just got back up and went about my business. In June 2017, I kept falling down at least once a week. Then the dreaded fall happened and sprained my wrist, twice in one week. I was called into my manager’s office and told me that she is going to put me on short-term disability so that I could figure out what was going on with me. I was working at a law firm as a patent paralegal for 14½ years, looking forward to celebrating my 15^th anniversary with a cake, never made it there.  Now I was on a quest to find out what was the matter with me. I had always been athletic, loved walking and bicycling at a nearby bike path. Also, I was dedicated to my job, and even authored a book entitled “Patent Professional’s Handbook: A Training Tool for Administrative Staff” so I was devastated!

So for the next several months, I went to a local neurologist who said that I was 100% healthy but has ataxia. I had no clue what ataxia meant, didn’t understand what he was saying,  and did not authorize me to go back to work. Then I decided to go to another neurologist at a nearby hospital and he referred me to Athena Diagnostics to get blood work taken and analyzed.  I finally got my results, and he told me that I have EA2, but when I showed my first neurologist my bloodwork results, he said that I do not have EA2 because I do not have any attacks and/or episodes, he’s sticking with SCA6. So I decided to go to Georgetown University Hospital to visit a movement disorder specialist but that took about a couple of months for the appointment. I finally visited with that doctor and she told me that I have EA2 too. The good news is, I was placed on long-term disability for the next couple of years and received 50% of my salary from the law firm until social security kicked in. I was diagnosed at 64 and was forced to retire 6 months later.

Now that my job career was over, I had to think about the future and what I needed to do next.  I was the breadwinner in my family so we moved from a busy metropolitan area to a quaint house in Culpeper, VA, and there I visited an ataxia doctor at the University of Charlottesville and he definitely told me that I have progressive EA2, but it’s the same gene of SCA6.  It doesn’t really matter what type of ataxia I have because it’s all the same – lack of coordination and balance.

Someone once asked me what were my hobbies?  I couldn’t think of any at that time.  I was a workaholic, loved my job, and didn’t have enough time to do any worthwhile projects at home.  Now that I’m at home, my hobbies are genealogy/ancestry and creating family photo albums.  Also, I do part-time work as a proofreader for 2 attorneys which I can work from home (no traveling involved).

Most of the day was with my computer and cell phone to keep in touch with the outside world, 7 days a week. I needed to do something more but felt I was alone and didn’t know how to reach out to people.  Then in April 2020, I found Terry Boyle (who operates sca6.org) and signed onto the Zoom teleconference with Dr. Gomez (Birds of a Feather). I realized that I missed connecting with real people and wanted to connect with people in a social atmosphere, not just the research part. I believe that there is a need to connect and get to know other people who have similar symptoms as me. I thought that this would be a great opportunity to reach out to other people and listen to other people’s stories to see how ataxia has affected their lives for enrichment. I believe that we need to have our voices be heard. So I started to host zoom group meetings every Monday at 1 pm (EST) with other SCA6ers and now it has expanded to other ataxians and it still going strong a year and a half later. We are all in this together is our motto.

I tried to raise awareness among my family and friends but don’t see them at all as they live in different parts of the country. None of them really understand what I’m going through on a day-day basis.  Every now and then, I will post something on Facebook about me being diagnosed with EA2 but didn’t receive much feedback.

Since I’ve been diagnosed with EA2, I see life a little differently now. I have learned not to be judgmental and to empathize with others. I’ve accepted, my diagnosis of EA2 but it was a challenge as I miss walking and bicycling that I could not do anymore. I’m grateful to have a husband and son who supports me but it was not easy for them to accept me as my life was changing around them.

My advice is to keep on moving and get busy with the things that you want to do. A busy person gets things done faster, has feelings of accomplishment. And to not let ataxia define you. I am hopeful that there will be a cure someday within this generation or next, as there are so many more resources available now than it was over 20 years ago and every day we are learning something new.