Kevin Swan, diagnosed in February 2012 at age 30.
Later this summer, it will be 5 years since my first symptom. Like most pALS, my diagnosis took nearly a year and a half thanks to that horrible game, “process of elimination”. My actual final diagnosis was on February 15, 2012 at Northwestern University Hospital.
Like every family, after receiving the ALS diagnosis, there was a lot of shock and disbelief considering my age at the time was 30 years old. I have always been a very adventurous and determined person and, thankfully, that did not change after the devastating news.
Two weeks after our world got flipped upside down, friends and family from my hometown in Sarasota, Florida created a team for an upcoming ALS Association walk. The amount of support was overwhelming and so were the donations. Our team raised over $80,000 in just 6 weeks. It was a success, no doubt, but something was missing.
At that point, I decided I wanted to get into the ALS business. My professional background was in advertising and technology. I was so angry when I had to explain what ALS was every time I mentioned it that I decided to start my own foundation, A Life Story Foundation. I wanted those people fighting ALS to be just as important as the fight itself.
Running a nonprofit with one employee (me) would be absolutely impossible if it were not for my family. My girlfriend, Elizabeth, and her two amazing kids are my drive to defeat this son-of-a-b!&%h! Not only is Elizabeth an amazing human being, she’s also the foundation’s Director of Fundraising. Talk about double duty!
I am so incredibly proud of the work our team has accomplished. My mom, aka the CFO, may be a retiree, but she is a full time volunteer. Along with former colleagues and friends, from Arizona to New York, they are all dedicated to Rewriting The End Of ALS.
This disease is absolutely tenacious. All things considered, I have progressed slower than most. I am in a power wheelchair and have lost the ability to do anything on my own, especially involving my upper body. I opted for a feeding tube just in time. I am still able to eat some foods, but it is mostly for enjoyment at this point. I need the tube to make sure I maintain my weight and nutrition.
As scary as powerchairs and feeding tubes sound, I am very happy. Don’t get me wrong, there are hours (not days) that I am angry or overwhelmed, but I always try to keep a positive outlook and adjust. ALS is a moving target, that took a while to understand. But thanks to Elizabeth, we always just take a deep breath and find out what our “new normal” needs to be. I think the right balance of humor, hope, and toughness are all necessary tools to navigate this insanely difficult journey.