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.
Hi Kevin – I actually went to St. Giles grammar school with your Mom AND my connection to Sarah is that my daughter Emily is good friends with her sister Liz (also from Oak Park IL).
I am so impressed with your courage and how you articulate living with ALS as well as your drive and motivation to obliterate a nasty nasty disease thru fundraising for research. You are an example to many and your mom must be so proud of you. Please tell your mom Pam Renzi Mauro said hello and I hope to see her at our 50th reunion in October. – Take care and I’ll continue to follow you. You are a real inspiration.
Prayers for strength and comfort for you and your family.
I grew up in Oak Park and still live there. I was diagnosed at Northwestern in March 2011 and can remember my first symptoms from 2009. At this point, I can barely remember life without ALS. It took me a while but I know it’s just a day at a time. I wake up stiff as a board and ready to give up. Slowly I decide that I’ll try to do a couple of things and then make up my mind about the day. Thankfully, every day so far I have decided to keep going. I am sure this is in large part due to my wonderful family who help me without making me fee like an invalid.
I admire the work that you are doing and your commitment to raising awareness and money for ALS. We all fight ALS in different ways but we share the determination to not go down without a fight and keep the hope for a cure. I hope you’re still fighting