Keep moving with MS
You can still enjoy your favorite summer activities—with a little adaptation.
by Vicky Uhland
Hundreds of studies show that exercise is physically beneficial for people with multiple sclerosis. Hundreds more report that sunshine provides a psychological boost for virtually everyone. So what could be better than biking, hiking, playing a game or just running around on a summer day?
If that last sentence made you cringe, you’re likely one of the estimated 70 percent of people who have heat sensitivity related to MS.
Lisa Green, a psychotherapist in Colorado Springs, Colo., is well acquainted with this phenomenon. “I think I came out of the womb hating heat,” she says, a trait that leads her to believe her nervous system may have been “going crazy” well before she was diagnosed with MS in 1997. As her MS has progressed, so has her sensitivity to heat. “It turns me into a wet blanket,” she says. “Everything slows down, fatigue sets in, and my strength is zapped. It’s what anyone would feel in 96-degree heat, but 10 times more.”
Green could just spend her summer indoors, but she feels that would be even more torturous than the heat. Prior to being diagnosed, she ran an average of 5 miles a day and was a regular hiker. She says she was so fit that when she went to a gym, “people would ask me if I was a trainer.”
When heat started interfering with her exercise regimen, Green devised a plan that allows her to still enjoy her favorite outdoor activities in the summer. “First, I had to grieve the fact that I can’t do what I used to do. I can’t exercise to the point of sweating anymore, and my 80-year-old mother outruns me,” she says. “Once I got through that, it was all about finding resourceful and creative ways to keep my body moving.”
Running, biking, hiking
Green replaced outdoor running with a treadmill workout. While she goes to her physical therapy clinic to use a specialized treadmill, called the Alter G, which holds her up and reduces the effects of fatigue and balance issues, standard treadmills are also widely available at local health clubs and city rec centers. These facilities may also have indoor tracks. You’ll get the benefit of air conditioning while being able to run or walk at your own pace.
Wherever you choose to run, Noriko Yamaguchi, PT, DPT, with University of Southern California Physical Therapy Associates, recommends starting with run-walk cycles, which are short bouts of running mixed with walking or a full pause when you need a rest. These types of drills help you gauge how much the heat is affecting you and allow you to quickly adjust your workout based on your energy levels.
If biking is your preferred sport, several alternative bicycle designs can help you expend less effort and energy on hot summer days. Tandem bikes allow you to ride while a partner does more of the work; recumbent adult trikes help with balance issues and also enable riders to lean back; and power-assisted bikes have an electric motor that kicks in if you get tired of pedaling.
Green is a fan of the BerkelBike, which is a hybrid between a recumbent bike and a handcycle. “I can use my legs and arms or just my legs or just my arms, and because I’m sitting I can really push myself,” she says.
“I often wear a cooling vest, a visor or headband with cooling beads, and I plan extra time in case I need to stop and rest and spray myself with water.”
Physical therapists also recommend wearing bike helmets with extra or larger-than-usual vents to help keep your head cool, and carrying a cellphone with you in case you overexert yourself and need to call for help.
BerkelBikes are pricey—about $6,500—but Green hunted around for money to pay for hers, scoring grants from a pharmaceutical company and a local organization. The Challenged Athletes Foundation is also a good resource for equipment grants. Last year, it awarded over $2 million in grants to more than 1,100 people with disabilities. The program is closed until September 2014, when it will begin accepting grant applications for 2015.
Dave Bexfield, who was diagnosed with MS in 2006 and runs the nonprofit website ActiveMSers.org, still enjoys cycling and other summer activities despite balance, leg weakness and eyesight issues that are exacerbated by exercise and heat. For summer hiking, Bexfield switches out his cane for forearm crutches, which give him more balance and stability on uneven surfaces. Yamaguchi says even if you don’t use an assistive device for walking, you might want to consider hiking poles—particularly when you’re hiking downhill, which demands more muscle strength for shock absorption and balance. Bexfield’s wife, Laura, carries a small portable stool, and every 15 minutes, he sits in a shady spot to cool down, sipping ice water from a hydration pack he froze the night before. He also wears a cooling vest and, often, a wide-brimmed hat. Following this regimen allows him to hike for a couple of hours, or two to three miles.
Time of day also matters. Bexfield, who lives in Albuquerque, N.M., restricts his hiking and biking to the cooler morning and evening hours—a strategy that medical professionals recommend for exercise in the heat. “You can achieve your fitness goals even by exercising in increments, so consider breaking up your workout into smaller, more manageable sessions,” says Mandy Rohrig, PT, DPT, with Horizon Rehabilitation Centers in Omaha, Neb.