I was a young, athletic 28 year old who just finished winning a softball tournament. Everything should have been great, but it wasn’t. The very next day I noticed my arm twitching. This twitching has never stopped and continues to be a part of my battle. This story goes all the way back to the summer of 2011.
Let me take you briefly down the road of my ALS diagnosis. After a few weeks of twitching, I knew something was up and went to my mother. She is a nurse and never messed around with anything regarding my health. This was no different. We went to a local neurologist and began the journey towards diagnosis. At the time, I was still very strong. I was just dealing with this odd twitching and struggling to figure out why it wasn’t stopping. Within a few weeks, the twitching had moved to my right arm. Now, with 2 arms shaking and twitching, I knew something was wrong. The local neurologist was still extremely optimistic because of my age and strength, but decided to recommend me to more of a specialist.
This next part of my journey lands me in New York City. This is where I would go through more tests than you could imagine. Blood work, cat scans, brain scans, MRIs, EMGs, spinal taps, and even a muscle/nerve biopsy were all performed. All would come up inconclusive or negative. Let me tell you, it wasn’t fun either!
I was so young and my progression was slow, so it was a diagnosis that took very long. I was sent up to Johns Hopkins on March 8, 2013. This is the day that will forever change my life. Although I had done my research and kind of saw it coming, I always held out hope it wasn’t the worst. I really wanted to hear ANYTHING, anything but those 3 horrible letters. It wasn’t meant to be. After another full day of poking and testing, I was diagnosed with ALS on a cool, sunny day last March.
After a tough few weeks of reality setting in, I decided I wanted to be a fighter. I was going to do everything I could to change the game of ALS. We started Quinn for the Win and immediately started raising awareness and funds for ALS. It has lead me to writing this blog today to show support to Project A.L.S. and the research they fund. Please come out this Saturday to my next big event called Quinnstock. It will be an amazing day for all to enjoy with live music, entertainment, carnival style games, and fun for the whole family! Please check out the flyer for more details or check out Quinn for the Win on Facebook. Thank you for all your support!