10 Ways to Stay Active This Summer With MS
Stay cool and prevent heat-induced flares with tips to maximize warm-weather fun.
Summertime is easy living for most folks—but when you have multiple sclerosis (MS), hot weather can really drag you down. “The raising of your body temperature by as little as a quarter of a degree can actually cause MS symptoms to re-emerge or worsen,” says Cherie Binn, R.N., an MS-certified nurse in Rhode Island who’s also had MS for 45 years. When you overheat, she explains, it messes with the speed and strength of nerve signaling—whose interruption is at the root of most MS symptoms.
For many people with MS, heat and/or humidity can make them feel like they’re having a relapse (at least the first few times it happens, before they understand what’s truly happening). However, Binn says that “any symptoms that are heat-related are not a relapse, they're a pseudo relapse.” The difference? A true relapse will last longer than 24 hours and won’t go away if you rest or bring your body temperature down. For instance, Binn’s vision gets so “wonky” in the hot weather, she can’t see well enough to drive—so she has to blast the A/C until she’s able to hit the road again.
Whatever your main MS problem is—vision issues, chronic fatigue, nerve spasticity, mobility limitations, to name a few—you can expect it (or them) to get worse if you suffer from heat sensitivity. Still, people with MS want to enjoy June, July, and August just like anyone else does. The cure for any heat-related pseudo flare is to cool down, pronto, or rest (or both). And yes, while you could camp out near the A/C for hours, that’s not always possible—especially if you like to exercise outside, get invited to a fun outdoor event, or are standing in line at Six Flags with your 8-year-old. Here are 10 ways to make the most of the balmy summer months while protecting yourself from MS flares.
1. Work Out Early (or Late)
Kara Skorupa of South Florida was diagnosed with MS nine years ago. When a heat-induced flare comes on, she says her legs start to feel heavy, and her hands either develop spasms or they become so weak it’s tough to open the fridge. She also happens to be training for a half-marathon these days, which is scheduled for the second half of 2021. That means she swims (mostly) or jogs at 7 a.m.—and her early-morning training schedule is non-negotiable, she adds, to avoid these symptoms.
Emily Reilly, a healthcare provider engagement manager for the National MS Society, loves playing volleyball. After 15 years of living with MS, Reilly says it’s better if she plays after the sun is down (or in an air-conditioned space) during the summer—and she no longer tries to fight this reality.
Water aerobics are good, too, as long as the pool temperature is less than 86 degrees, she adds. “Water is a great source of resistance that allows you to move more freely than on land while also keeping your body temperature cool.”
2. Give Someone a Heads Up
When Skorupa goes out to exercise, someone knows where she’s headed in case her legs feel too heavy to make it back home, which has happened before a few times, she says. “Even when I’m swimming, I want to make sure that I'm not totally alone, just in case. I always say MS is like a sneak-attack disease. It’s hard to know what's coming next and you can't totally plan for it.”
Koreen Burrow, of Northern Idaho, and her husband took along a SPOT transmitter when they hiked the Appalachian trail a few years ago. These transmitters use GPS tracking so if you get into a tough spot, you push a button to send a message to friends or emergency services and they’ll know where you are.
3. Put Yourself on Ice
Several MS patients swear by their portable cooling devices, whether it’s a high-tech cooling towel or a cooling vest. Here are tips for how they work best (from MS peeps who use them all the time):
Invest in a cooling vest that comes with pockets filled with frozen cooling packs (the larger the better, everyone agrees). Steele makes a cooling vest which looks like a field jacket, while Polar Products vests are more fashion-forward. Purchase a spare set of inserts, suggest Binn, or simply buy a few cooling packs (the kind for kids’ lunches work well) from Target or the drug store.
A wet towel can keep you chill for a couple of hours. Shambrieka Wise, of Dallas, TX, carries one around everywhere. (Try this four-pack by U-pick.) Another option is to keep a cooler full of ice water and towels handy if you’re at an event or at the beach, suggests Reilly. “A cool towel on the neck or wrists will cool body temperature down very quickly.”
Or, wear an ice collar, advises Jenny Lawless of Champlain, IL. Lawless, who’s had MS for 14 years, keeps one in the freezer and when she overheats, puts it on the back of her neck and rests for a bit. “It really helps,” she says.
Be sure to put on a cooling vest with frozen wrist wraps or a neck collar for at least 30 minutes before exercising. Studies show this can help you cool for another two hours as you work out. It’s like getting really cold and then exercising to warm up.
4. Plan One Big Thing Per Day—Then Be Flexible
When Skorupa vacations with her family, “I don’t do stuff back-to-back,” she says. That could mean tackling one big event—like the hike she took up Cadillac Mountain at sunrise when she and her husband were in Acadia National Park—or simply calling it a day while the rest of the family stays out exploring. “We make adjustments and everybody knows not to be offended if I back out,” says Skorupa.
But do have a back-up plan for your one big event. “Make alternate plans for those days where the heat may be too much for you,” suggests Reilly. “Giving ourselves permission to make changes to our plans to accommodate for how we are feeling is key to our well-being. It takes some pressure off to enjoy those well-deserved vacations.”
5. Call in the Reinforcements
The beach is Lawless’ happy place. “When we go, we are all adamant about renting a place that is right on the beach, usually one with a short board walkway that leads out past any dunes,” says Lawless, who uses a cane or crutches to help her walk. “I have a set of older arm crutches and use them to walk along the hard part of the sand by the shores. Sometimes I take a crutch out in to the water and walk around where the water is over my feet.”
6. Drink up
You’ve heard it a hundred times but staying hydrated is important—especially when it’s hot. “When you're hydrated, you can sweat a little bit more efficiently, which cools your temperature down,” explains Enrique Alvarez, M.D., a neurologist at the Rocky Mountain MS Center at the University of Colorado, in Aurora, CO. Drinking iced water does double duty. “Ice water can cool your core temperature down,” he notes, adding that he recommends patients freeze a half-full water bottle and then fill it up with regular water so it stays cold when they’re out and about.
But don’t be afraid to drink more than usual, especially if you exercise. Wise drinks two liters of water each day. Michael Tomlin, of Frederick, MD, carries two 32 oz. water bottles on bike rides outdoors, and drinks one every 10 miles.
7. Take a Cold Shower
When Burrow overheats while bike riding, she has to cool down or she loses her balance. She also battles fatigue and has more trouble walking and running. Her solution: Taking a cold shower or bath and then resting in the A/C. “I start with [the water being] kind of warm, and then I cool it down, and cool it [more], and then it actually is cold by the time I get out,” she adds.
8. Partner With the First-Aid Station
“Most amusement parks, like Six Flags or Disney[World], have a first aid station that’s also a cooling station,” says Binn, who makes a point of visiting one when her cooling vest inserts are no longer frozen. “I change out my packs and leave the melted ones in their freezer so I can go back and get them when they're more frozen,” she adds as an extra tip. More advice? Scope out the first-aid station as soon as you enter into the park—then, make arrangements before you need help cooling down. “That will often give you four, six, even eight hours in a park that you might not have otherwise without cooling attire,” she notes.
Be sure to build in some rest along the way. “Space your time so you get into the indoor events in-between rides out in the hot sun,” Binn suggests. Stand in the shade, bring an umbrella to protect your from direct sun, and spend time in a pool (if the park has one).
9. Join an MS Summer Event
The National MS Society sponsors bike rides (Burrow and Tomlin have both participated in several Bike MS rides) as well as walkathons, where participants ride or stroll to raise funds for MS in every part of the country. The beauty of these events, besides raising money for a good cause, is that they are designed for people with MS. “They have rest stops every 10 to 15 miles, they have medical staff on duty, they have all kinds of cooling options,” explains Burrow, who is participating in a bike ride across Iowa this summer. It’s a way to stay active, see new things, and stay safe (and cool) at the same time.
10. Just Do It
Staying active or going on vacation in the summer can seem daunting, but people with MS will tell you not to be afraid to try. The key is having a plan, says Burrow. “I always think there's a way I can get it done. It may be using my cooling vest. It may be riding early in the morning and then finishing up in the late afternoon. I don't know what it's going to be, but I know I can do it,” she says. So take that thought with you and make this the best summer ever, no matter how high the temperatures soar.
MS Precooling and Exercise: Multiple Sclerosis and Related Disorders. (2019.) “Impact of pre-cooling therapy on the physical performance and functional capacity of multiple sclerosis patients: A systematic review.” https://www.msard-journal.com/article/S2211-0348(18)30498-X/fulltext