Cheryl Hile is hard to catch up with.
Hile is a marathon runner. When I first interviewed her, nearly eight years ago, she had just finished running a marathon in Cape Town, South Africa. It was the first race in her goal to run a marathon on each of the seven continents in the following 12 months. Goal accomplished! Hile followed that race with marathons in Buenos Aires, Honolulu, Antarctica, Tokyo, Vienna, and finally in Christchurch, New Zealand.
All of this was done while wearing a lightweight carbon fiber ankle-foot orthoses (AFO), which Hile uses because she lives with multiple sclerosis (MS). The AFO holds her right foot at a slight angle to counter her MS foot-drop and help her to prevent tripping. Her left side is still very strong so, as she runs, she pushes off with the left leg and the right side follows.
In an April 2024 interview with Brain and Life Hile called running her therapy.
“I feel like it just keeps my body stronger for the daily battles against MS because not only do I have right side weakness, but I also have foot drop…I feel like being physically active by doing a sport that I really love and that I enjoy, that I can stay relatively fit, and healthy, and strong so that I can go forward and push forward throughout my day.”
Catching up
Recently, at age 50, Hile revealed that her diagnosis has been changed from relapsing to progressive MS. That progression has changed her running routine a little.
For one thing, her collection of AFOs has grown from the half-a-dozen, or so, that she used in 2016 to what she now calls “an arsenal” of more than twice that many, and she switches. distance run on a cold day because she knows her leg won’t tire as much when it’s not hot. If it’s a shorter 5K race in the summer, she’ll wear a stiffer AFO. She needs the extra support because she knows her running form will break down faster when it’s hot.
Hile’s orthotist recommends she get a new AFO every year because running puts extra stress on it. A broken AFO during a marathon wouldn’t be a good thing. All of her devices are light and dynamic and are custom made to address her changing body posture and gait as her MS progresses.
Another difference since she started marathoning is the distance she can run. Hile is transitioning from running full to running half marathons. “I still love to run and I can still run halfers at a somewhat decent pace and it does not take all day to finish,” she says. Her post-race recovery, which “takes forever and a day” after a marathon, is much easier when she goes only half the distance.
Hile’s secondary progressive MS has brought with it “cog fog,” the sluggish thinking that’s a common MS symptom. She switched her disease-modifying therapy (DMT) to Ocrevus (ocelizumab) in 2021 and says, though she has and no new lesions, she feels like things are getting worse. “I know it is all relative,” she says, “I can still run.”
Running with RAMMS
Hile isn’t running alone. Seven years ago, she created Run a Myelin My Shoes (RAMMS). It’s a group of people with MS, their families and friends, healthcare providers and MS advocates that supports athletes who live with MS and other illnesses that compromise their mobility. The group meets each year for a walking/running event in the US. It also helps others to create similar events around the world. This year members have participated in races in Mesa, Arizona and Helsinki, Finland and other events are coming up in London, England and Hartford, Connecticut.
RAMMS and Hile are good examples of a belief I try to follow: Life isn’t about hiding from the storm, it’s about learning to dance in the rain.
When they run, they dance.
| Have you checked out my book about living with MS? It’s great for MS “newbies,” or anyone with questions about this illness. |
(This post first appeared on the Rare Disease Advisor website.)
(Photo courtesy Cheryl Hile)
