Beth Hebron, diagnosed in October 2013 at age 26.
In October of 2013 I was diagnosed with ALS. In the Spring of 2012, I began having symptoms of weakness and loss of coordination. Particularly I noticed this when my kickball league started, and I missed my first pitch completely and face planted mid-kick. That winter I went snowboarding with my family and the minute I tried to put my boots on my legs went wild, shaking uncontrollably. I tried desperately to sit up on my board, but no matter how hard I fought I just couldn’t do it, which left me to sit in the lodge all weekend and wonder what is happening to me?
In the spring my speech became slurred. Every time I went to speak it felt like I was choking on my words. So I finally decided to go to the doctor. After seeing how I could not hold my arms out in front of me anymore and my unsteady gait walking down the hallway she immediately sent me to a neurologist. 3 months, two MRIs, a barium swallows test and EMG later I found out I have ALS.
It is difficult to accept that you have a disease that is incurable and terminal. So when my life became full of doctor appointments, making living wills, and filling out medical directives I made the decision that I needed to start living my life the way I want to live it. Dye my hair, get a tattoo, go to Vegas, skydive–you name it–I am going to do it and I’m not going to wait. Planning these experiences has brought all of my friends and family together and helped bring me memories that I will have forever. It pains me to know that I might not be there for all the milestones in my family and friends. Watching my parents struggle with me having this disease is the hardest part of all. This is why I am actively doing all that I can to raise awareness for ALS, so that no parent has to suffer this way again.