Faced With MS, Jill Walsh Rolls With the Changes
November 2016 Issue
The biking leg of triathlons was Jill Walsh's least favorite aspect of the event, which may surprise some given the name she has since made for herself in the sport of paracycling. The 53-year-old former runner turned triathlete became one of the 24 members of the U.S. Paralympic Cycling Team, who competed at the September 2016 Paralympic Games in Rio de Janeiro, Brazil.
Among Walsh's paracycling career highlights, prior to being named to Team USA, are a silver medal in the T2 road race and bronze in the T2 time trial at the 2014 UCI (Union Cycliste Internationale) Para-cycling Road World Championships in Greenville, South Carolina; a gold medal in the T2 road race and a silver in the T2 time trial at the 2015 UCI Paracycling Road World Championships in Nottwil, Switzerland; and a gold medal in the T1-T2 mixed-that is, men and women racing against each other-time trial at the 2015 Parapan American Games in Toronto, Canada. This is particularly impressive since she only started competing in 2014. (Author's note: The T1 class is for athletes with severe locomotive dysfunctions and insufficient balance to use a regular bicycle. The T2 class is for cyclists with more moderate loss of stability and function compared to T1. Athletes in both classes use tricycles and include people with a variety of disabilities.)
Facts From the National Multiple Sclerosis Society
Multiple sclerosis (MS) is a disease in which the myelin-the sheath surrounding nerve fibers-in the central nervous system is damaged and interferes with the transmission of nerve signals between the brain and spinal cord and other parts of the body. While the exact etiology of the disease is unknown, scientists believe it is caused by the interaction of immunologic, environmental, infectious, and genetic factors. The average person in the United States has a 0.1 percent chance of developing MS. Two to three times more women than men are diagnosed with MS, and patients are most often diagnosed between the ages of 20 and 50. The disease is more common in Caucasians of northern European ancestry and in areas farther from the equator. Among the most common symptoms are difficulties with gait, fatigue, numbness or tingling, dizziness and vertigo, and pain. For more information, visit www.NationalMSSociety.org.
The retired New York State trooper has always been very active. It was in 2010, while training for her first half Ironman, that she was diagnosed with multiple sclerosis (MS). Walsh says she experienced persistent vertigo and dizziness and sought care from her physician. Several months and an MRI later, she received the life-changing diagnosis. "I still have bouts of [vertigo and dizziness] now," she says. "It comes and goes. If I get really hot it flares up. Cold triggers me, too."
Walsh says, in hindsight, some of the signs were there, such as the numbness in her foot that persisted for about a month, the more-than-normal fatigue, and heat sensitivity that she attributed to over-training. "It made sense when I pieced the other things together," she says.
Rolling With the Changes
Rather than slowing down after the diagnosis, Walsh's activity level has increased over the last several years, although she makes accommodations as she adapts to the changes her body is going through.
For example, in July 2012 Walsh completed her first full-length Ironman, the Lake Placid Ironman, New York, using an AFO on her left leg-a Kinetic Research Noodle for cycling and an Allard BlueROCKER® for running-due to MS-related foot drop. It was two years after her diagnosis and seven months after a relapse that severely limited her ability to walk for a month-yet she had set a goal and was determined to accomplish it. Walsh crossed the finish line after 16 hours and 16 minutes, to the cheers of a crowd of well-wishers. The following year, she took third place in the Accenture Challenged Athletes National Championship triathlon in New York, and second place in the USA Paratriathlon National Championship in Austin, Texas. That October she participated in the Challenged Athletes Foundation Million Dollar Ride, a 620-mile ride from San Francisco to San Diego.
"It was the longest week and a half of my life," says Walsh about the Million Dollar Ride. She trains in rural New York State, where she can ride nonstop for lengthy periods, she explains. However, the ride down the California coast required her to stop many times for traffic signals, pedestrians, and other traffic-related conditions, and she often fell while stopping due to the MS-related balance difficulties she was experiencing. Despite the difficulties, it was a pivotal point in Walsh's para-athletic pursuits because a man who was a stroke survivor was also participating in the event riding a modified road racing bike with a rear conversion axle that transformed it into a tricycle. The conversion axle piqued her curiosity. So several weeks after she returned home, Walsh e-mailed the man and he offered to lend her a spare axle with one caveat: She would have to race her modified bike.
"I said I'm not interested in racing it, but I'd love to borrow it," she says. "He said, 'No, no. You have to race it. I have seen you ride and you are really strong.'" Walsh agreed to the terms, and has proven to be a strong competitor in the sport. "No adult really wants to ride a tricycle, but it keeps me riding," she says.
Continuing to Face the Challenges
As her disease progressed, Walsh had to taper off on running before ultimately giving it up; she now focuses on cycling. To deal with balance and movement compensation issues, she works with a personal trainer to strengthen her core muscles. Her orthotist has also fitted her with a second AFO, this time for her right leg. "I wore one [AFO] for a couple of years and then it was about two years ago that I got the second one. Although my orthotist, Jim Hettler, CO, with Orthopedic Appliances of Central New York, knew I'd be back in for a second [AFO], I was in a little bit of denial," she says.
Today, Walsh is a bilateral AFO user-she wears BlueROCKERs for walking because they are sturdy and provide the support she needs, especially when walking outdoors on uneven terrain, and Noodles for cycling because they are more rigid and she is used to them, she says. "We tried all different brace combinations, and right now I get the most power from that setup."
She continues, "I'm a little more involved on my left than my right [side]. I can push down on my right foot but I can't pull my toes up, whereas on the left I can't push down or pull up. I have sensation in my [left] foot...but when I close my eyes I don't know where it is in relation to my body."
Robert Meier, CO, BOCO, has over 15 years of experience with Allard's ToeOFF and BlueROCKER family of products, and has lectured worldwide about them. Although he has not personally worked with Walsh, he has worked with many marathoners and cross-country cyclists who use these carbon composite, energy-return AFOs, and speaks about their benefit.
"The energy-return AFO loads potential energy as the tibia progresses over the fixed foot just using gravity, and then...when the heel comes off the ground it helps spring the foot off the ground. Instead of just picking the foot up during swing, it actually augments the function of the calf group," he explains. "The foot biomechanics are going to work better because the heel is able to function more appropriately. With the foot biomechanics functioning better, then [Walsh] is going to function at a higher level because all of the biomechanics are working." In addition, compared to custom-molded plastic AFOs, carbon composite AFOs allow some ankle motion. "Studies have been done taking people out of plastic and putting them into carbon composite AFOs and their calves actually get bigger, because there is some motion, there is some function going on," he says.
Maintaining function and being active remain high on Walsh's priority list. "I can't imagine not being active, and if something stops working you just have to find a different way, like when I needed two braces," she says.
During the Rio Games, Walsh competed in the women's T2 30k road race and in the T2 15k time trial. Cheering her on from the stands were her husband and 17-year-old daughter. Her two college-age sons remained stateside as the semester had started, but they were in constant contact via text. Also rooting for her stateside were her family, friends, community supporters, and fellow members on Allard's TeamUP. The time trial was held September 14 and the road race on September 16. Walsh claimed silver in both events, which now allows her to add "medal-winning Paralympian" to her list of achievements.
"Be willing to accept the changes and [keep] your goal [because]...there is a way to do it. You don't have to give up on everything," Walsh emphasizes. "Change is hard but it's not bad or good-it's just different." She continues, "You just go forward."
Laura Fonda Hochnadel can be reached at .
Editor's note: TeamUP is the first national team composed of people who live with foot drop-due to any etiology, from all walks of life, and with varying activity levels-who overcome their mobility deficits with an Allard device. The team's goal is to educate and inspire others to "Get Back Up" after adversity, regardless of condition or circumstance. For more information, visit getbackuptoday.com.