This week we hear from the inspiring Amy De Leon. Take a look at her story of perseverance and tenacious-ness.
Do you know someone who is tenacious and seems to be content showing that something CAN be done, when they’ve been told (or warned) by others that it CAN’T be done? Well, if you don’t then it’s very nice to meet you!
As long as I can recall, I’ve been more motivated by reverse psychology and on the alert to volunteer to make anything better. Ya, I’m a fixer by nature. These days I’m more about challenges, improvements and fixes for myself though.
When Ataxia was merely a suspicion for my symptoms, I was a 30 something, mom of teens and a VERY BUSY Extension Agent. Working hard in my community to spread important education, being a good wife and hauling kids to their activities were priorities. I certainly didn’t have time to slow down and “mess” with anything that may hinder my priorities.
Frankly, everything I read about this condition was bleak, depressing and a bit scary. After denial and ignoring didn’t seem to be helping, my problem-solving skills focused on me for a change. I decided firmly that I should lose weight and see if that might help. I continued with my life adding some supplements and eating better. Losing over 100 lbs. was fantastic for my body, but I feel strongly that exercising and increasing my activity level was crucial in keeping the Ataxia symptoms from becoming more pronounced. An official lab test would confirm SCA8 in 2015.
My life has changed in the last 13 or so years from when Ataxia was 1st suspected. I stopped working in 2018 and was approved for SSDI right away (hallelujah). It was simply too dangerous for me to continue working in a traditional environment. I stay active – now I exercise daily and get paid for just being awesome! I had lots of creative ideas when I was working but never had an excess amount of time. I’ve written quite a few children’s books – currently searching for a publisher and illustrator … I’ve started drawing and painting again (my Etsy shop is coming soon)!
No longer in a hurry to get here or there, being able to say no and set boundaries, doing my own thing when and how I want has been a HUGE stress reliever! Yoga, meditation/prayer and enjoying nature are now things I get to do more often, if not daily – so good for my soul! I flip-flop between trying to find out more about Ataxia, to just ignoring it and washing the dishes, taking out the trash or cooking something delicious. The educator and fixer in me, of course, wisely reminds me that knowledge is power. A major determinant of the success or failure of a thing is if there is a strong tendency to hold on to a way of doing something because it was always done that way. I don’t know about you, but I want to continue to thrive and see the day when there is a solution to this condition!
Thanks, Amy De Leon for sharing your story.
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend, or relative. You may fill out the form below to get started.