My Multiple Sclerosis (MS) story started in November of 2009. I was competing in the 2009 Florida Ironman in Panama City, and after the first 1.2-mile lap of the swim I got out of the water and couldn’t feel my legs. They went numb and had bad cramps. I thought it was just from the race, so I continued on and swam the second lap. Throughout the next portion of the race, the 112-mile bike leg, the same issues continued on-and-off all day. By the time I got to the run leg, a 26.2-mile marathon, my feet and lower legs were like rocks, but I managed to get through the entire race.
When I got home my legs and feet were still completely numb, I just thought it was from the race and would eventually go away, so I kept training. I then signed up for a marathon that would be held in April. During training runs, I started getting more new symptoms. The numbness in my lower body had moved up to my mid-section, where I would experience hot electrical-types of sensation. This finally made me go to the neurologist to get checked out. After a checkup and an MRI I was diagnosed with MS. The first thing my doctor said to me was that all of his patients with MS lived “normal lives”. I asked him to define “normal”, because I wanted to be able to keep doing what I was doing with endurance sports. His only answer was that I may need to redefine what my normal was.
Right after the diagnosis I knew I wanted to keep doing what I was doing with endurance sports, and use that to help me stay ahead of MS and to raise awareness for MS. I started searching the internet for “endurance sports and MS” but wasn’t finding much. Then I ran into a story about MS Global, which is a group of people with MS and others with connections with MS. They were led by Tyler Hamilton, a pro cyclist in the 90s, who were riding the Tour De France routes to raise awareness and funds for MS research. That motivated me that if they could do it, so could I. I decided to use my ability to still ride as the biggest part of my treatment plan, hoping to inspire others.
Soon I was invited to a cycling event in Asheville, NC in 2014 that ended up being a MS Global event supporting Can Do MS. I realized there that I had come full circle from the day I was searching the internet and first found the group that inspired me, and now I was meeting that team in person. To this day I still ride for that team, and we have riders across the country—and around the world—who join our week-long event that happens each year.
On top of that I set goals each year to challenge myself and to raise awareness. When the Covid-19 pandemic hit, all events were cancelled so I decided to start my own cycling challenge. I ended up riding 100 miles each weekend for MS, completing 76 weekends in a row with at least one of those days being 100 miles or more. Sometimes, both days were 100 miles each. The longest one day ride in the streak was 270 miles. My upcoming goals include adding 12- and 24-hour cycling races to my yearly calendar.
I will continue to ride and challenge myself until I cannot do it. If that ever happens I will find other ways to challenge myself, but I hope that day never comes. One example of having to adapt was losing my ability to run because of the onset of footdrop that often affects people who have MS. I finally tried an ankle-foot-orthosis (AFO) to help improve my stability, and since 2022 the Toe Off® AFO has been helping my walking so much that I may be able to try running a bit. Time will tell, but I will always live by “Every Step Beats MS” and plan to keep moving forward and finding ways to adjust as needed.
Gene Caffrey was first diagnosed with MS in 2010 and later developed spasticity in his right leg/lower ankle which caused footdrop. He is originally from Atlantic Highlands, NJ and has been living in Cary, NC since 2011. His family includes wife, Leanne, son Matthew and daughter Leanne, and 6 cats… or 8 if you count the cats his kids have at college! When he is not working as a National Account Manager for CCL Label he spends as much time as he can on his bike, his favorite hobby for sure. When asked how being diagnosed with MS has changed him, he shared this: “MS has definitely changed me for the better, I believe I am more focused on living my best life. Without my diagnosis, I would not be the person I am today. I would not be so focused on setting goals on my bike, like racing in endurance cycling events, to inspire and support others. I also would not have had the chance to meet so many others facing similar challenges, nor the ability to help them as they are finding their own ways to adjust.” He added that his best advice for “living your best life” is to surround yourself with people who are dedicated to helping you find ways to overcome any new issue or obstacle that may arise. For more about Gene, please check out this link to a recent video: Gene Caffrey – Every Step Beats MS