How to savor the summertime
This time of year can be a challenge to people with MS. Tips to make the living a little easier
by Matt Alderton
For many people, June is joyous, July jolly and August awesome. For the nearly 1 million Americans who live with multiple sclerosis, however, summer isn’t always sublime. It can be stifling.
“When nerves are heated, they conduct electricity more slowly. When multiple sclerosis strips the myelin off nerves, the nerves are even more susceptible to heat and conduct electricity even more slowly,” explains Christopher Langston, MD, medical director of the Madlyn Borelli Multiple Sclerosis Center at Montefiore Nyack Hospital in Nyack, New York. “As a result, when their internal body temperature rises, people with multiple sclerosis often experience worsening of their symptoms, including numbness, tingling, burning, weakness and fatigue. Therefore, in the summertime, staying cool is an important part of managing MS symptoms.”
Staying cool isn’t always easy. But by preparing for the heat instead of avoiding it, people with MS can turn summertime into a season of activity and fun. Here’s how.
1. Stay hydrated
In otherwise healthy people, dehydration can cause unclear thinking, mood swings, overheating, constipation, kidney stones and urinary tract infections, according to the U.S. Centers for Disease Control and Prevention (CDC). In people with MS, the consequences can be even more severe.
“Dehydration can exacerbate MS symptoms, so it’s important to drink plenty of fluids — especially water — during the hot summer months,” says neurologist and MS specialist Achillefs Ntranos, MD. To increase your water intake, drink a glass of water with every meal and carry a water bottle that you can refill throughout the day. Adding a slice of lemon, lime or cucumber or an herb like mint can enhance the taste.
Keep drinks on ice
Even better than a water bottle is an insulated tumbler that can keep your water chilled. “Carry an ice-cold beverage with you at all times so that if symptoms worsen, it can soothe them,” says Christine Kingsley, health and wellness director of the Lung Institute and an advanced practice registered nurse who has experience caring for people with MS.
As long as they aren’t too sugary or are made with sugar-free syrups, frozen drinks like slushies and snow cones can be an indulgent way to cool down quickly.
Cut down on coffee and cocktails
Alcoholic drinks like beer, wine and liquor, as well as caffeinated drinks like coffee, tea, soda and energy drinks are diuretics. That means they increase urination, which can lead to dehydration. So, it’s best to avoid them, Ntranos says.
2. Keep your cool
An elevated body temperature can wreak havoc on your health. So, when the mercury rises, it’s important to stop sweat in its tracks.
Put your body on ice
“When venturing outdoors, body cooling devices can be very helpful, such as cooling bands for the wrist, neck and head,” Langston says. Cooling vests are another good idea.
If you don’t have cooling gear, try strategically placed ice packs on pulse points like your wrists and neck, Ntranos suggests.
Or there’s always the “wet towel trick.” “This involves taking a regular towel and moistening it with cool water before lying it over or draping it around you like a duvet. This can be done most easily by placing it beneath a shower running cool water for a few moments,” explains physical therapist Lalitha McSorley, owner of Brentwood Physiotherapy Calgary in Calgary, Alberta, Canada. “Placing the towel over your body creates an instant cooling sensation and will help to keep temperature levels even.”
Take a dip
“If you have access to a body of water, such as a pool or lake, consider going for a swim to cool off,” advises Ntranos, who says a cold shower can substitute for those who don’t live near water. “A cool shower or bath can be a quick and refreshing way to cool down on a hot day.” The ideal water temperature is 84 degrees for people with MS.
Let your hair down
In winter, parents caution against it for fear of catching a cold. In summer, however, walking around with wet hair can be advantageous by creating a cool barrier between your head and the environment. “The evaporative effect will ensure that the water is retained in the hair while some of it evaporates, thus helping to keep you cool,” McSorley says. If you have short hair, wearing a wet hat or bandana can have a similar effect.
Fan your flames
“Fans can be a simple and effective way to keep cool, especially when used in conjunction with air-conditioning,” Ntranos says.
If you don’t have air conditioning, a fan can simulate one, says Carly Campbell, author of the blog Mommy on Purpose, who has a family member with MS. “You can place a bowl of ice in front of a fan to create a DIY air-conditioner,” she says.
Dress for success
“Tight, heavy clothing can trap heat against your skin, so opt for loose-fitting, lightweight clothing made of natural fibers such as cotton or linen,” Ntranos suggests.
3. Take it easy
While lowering your body temperature can soothe MS symptoms, it might create its own challenges, especially for those with mobility challenges. “While nerves work better in cooler temperatures, muscles generally do not,” Langston says. “So, keep in mind that cooler temperatures may worsen muscle stiffness and the possibility of injury.”
Cook without cooking
“Focus on no-cook meals that are quick and easy to prepare. This can help to reduce the heat and humidity in your home and make it more comfortable to be inside,” advises Campbell, whose favorite no-cook recipes for the summer include salads, cold soups and smoothies. “For example, one delicious and easy-to-prepare no-cook recipe that I love is a refreshing watermelon, feta and mint salad. Combine diced watermelon, crumbled feta cheese and chopped fresh mint in a bowl and drizzle with olive oil and lemon juice. This salad is light, refreshing and perfect for a hot summer day.”
Never mind the glistening runners who populate the sidewalks in summer. Jogging in the mid-day sun isn’t the only way to exercise, points out Ntranos, who suggests activities like water aerobics, which provides cardiovascular exercise in the cooling confines of a pool; yoga, where slow, controlled movements can challenge the body without overheating it; and walking, which can be done under the shade of trees or even indoors in the air-conditioned comfort of a grocery store.
Mind your medications
Some drugs — for example, beta-interferons like Rebif or anticholinergic medications, which doctors sometimes prescribe for bladder overactivity — may exacerbate heat intolerance by increasing body temperature or reducing sweating, which is the body’s way of cooling itself. If summer’s a struggle, consider reviewing your medications with your healthcare professional.
Do you enjoy cooking, walking or gardening? Do you have errands to run or yard work to do? Summer doesn’t have to change the things you do — just when and how you do them.
Rise and shine
“Starting tasks early in the morning, before it gets too hot, can make them more manageable,” suggests Ntranos, who says evenings can be just as cool — and, therefore, just as productive — if you’re a night owl.
The right tools can make easy work of difficult chores, according to Ntranos. For example, consider using a power washer, leaf blower and riding mower to make yardwork easier. While you’re at it, wear a hat and use an umbrella to shield yourself from the sun, and bring a misting fan for a refreshing burst of cool air when you need one.
4. Know your limits
If you need to do errands or chores outside, be aware of your limitations and schedule your time accordingly. “Set a timer for outdoor activity,” suggests Elissa Dickey, author of the MS-themed novel “The Speed of Light.” “I love working in my flower garden in the summer, so I set a timer for 10–15 minutes to make sure I take frequent breaks.”
Evidence suggests that exercise can decrease the severity of MS symptoms like fatigue while improving gait and balance, so it’s important to maintain your fitness routine.
Join a gym
Commercial gyms and community recreation centers often have indoor running tracks, lap pools and weight rooms that are kept deliberately cool with the help of industrial-sized air-conditioners. Before you join, ask what temperature they maintain in their facility and pool.
Take a swim
“Many people with MS find success exercising in the pool,” Langston says. “The water keeps the body temperature lower, the buoyancy of the water assists with moving weakened muscles and the resistance of the water strengthens affected muscle groups that are hard to target with standard exercises, such as dorsiflexion of the ankle and hip.”
If you use a wheelchair or other assistive device, your doctor may be able to help you find an accessible swimming pool in your area, Langston adds.
Find alternative outdoor activities
The outdoors doesn’t have to be off-limits, according to Ntranos, who says there are many al fresco activities that people with MS can enjoy without overheating. A few favorites include hiking, which can be suitable for people with disabilities on trails with smooth, even surfaces; gardening, which can be made easier using raised beds or containers that allow you to garden from a seated position; picnicking, opportunities for which are plentiful at parks with accessible picnic tables and shaded pavilions; and birdwatching, which can be enjoyed from shaded benches in public places. Because they can be as sedentary and shaded as you like, even fishing and camping are fair game thanks to accessible campgrounds and adaptive fishing gear.
Cycling is another good activity for people with MS, according to Ntranos, who says biking in the heat “allows you to move quickly and stay cool” from the cooling breeze that’s created by your momentum.
Adds Kingsley, “Bicycles are easily customized to accommodate physical needs, with backrests and leg straps providing security in the event of loss of balance. Cycling tracks in parks are also generally covered by tree canopies so there’s less heat.”
Don’t forget your helmet: Look for one with extra or larger-than-usual vents to help keep your head cool.
5. Rethink recreation
Summer is supposed to be fun. You don’t have to miss out. Seek new ways to enjoy yourself away from the sun’s swelter.
In addition to swimming — which is as great for recreation as it is for exercise — consider water sports like rafting, kayaking and stand-up paddleboarding, all of which can help you stay cool since they take place on the water.
Or head to a water park. “Water parks are one of my favorite summer destinations because it’s something the whole family can enjoy together,” says Kimberly Conover Dickerson, author of the lifestyle blog Winter & Sparrow. “Many of the areas are disability-friendly, and who doesn’t like floating on a rubber tube in a cool stream of water? It requires little energy expenditure, and you get to enjoy time outdoors.”
Reclaim the beach
“Many people with MS find it very difficult to enjoy the beach. Not only does heat pose a challenge, but also sand is more difficult to walk through and foils many walking aids, such as canes, crutches and braces,” Langston says. Fortunately, there are walkers and wheelchairs designed specifically for the beach.
Embrace the indoors
While many people flock to outdoor activities during the summer months, indoor alternatives abound. “Some of my patients’ favorite indoor activities in the summer are sitting by a fan and reading, playing board games with family or friends, writing down thoughts in a journal and watching movies,” McSorley says. “These activities can help to keep them cool while still providing some fun variety.”
If you’re itching to get out of the house — if you’re a parent with children who are home from school, for instance — consider field trips to air-conditioned escapes, Ntranos adds. Movie theaters, museums, bowling alleys, climbing gyms and trampoline parks are all cool ways to spend an afternoon, literally and figuratively.
If you can’t tolerate being out during the day, look for nighttime activities like concerts and movie screenings. Drive-in theaters, for example, are a great option because you can enjoy the movie from your air-conditioned vehicle until it’s cool enough to sit outside.
6. Get out of town
When temperatures rise, your instinct is probably to hunker down and stay put. The best thing for your body and your mind, however, might be the exact opposite.
Although they tend to be more crowded in summer, national parks can be an ideal travel destination for people with MS, according to Tarita Davenock, who was diagnosed with MS in 1995 and later founded Travel for All, a travel agency specializing in accessible travel. Most parks, she says, have accessible routes and tours, not to mention accessible bathrooms and scenic overlooks that can be enjoyed from the air-conditioned comfort of a car or park shuttle. Plus, U.S. citizens and permanent residents who have disabilities are eligible for a free lifetime Access Pass to any national park.
Flock to higher elevations, cooler temps
“One of the best ways to escape the summer heat for people with MS is to travel to a place with cooler temperatures and higher elevations,” says McSorley, who suggests mountainous destinations like Colorado and coastal cities with cool summers, like San Francisco. Thanks to their geography, both have mild summer temperatures and plenty of outdoor activities for people of all abilities.
7. Set sail
It’s naturally cooler on the water. A cruise can therefore be a great summer vacation option for people with MS, according to Ntranos. Along with air-conditioning and a variety of indoor activities for guests to enjoy, most ships have elevators, accessible staterooms and onboard doctors. Plus, there are many options in northern latitudes; for example, an Alaskan cruise, a Nordic cruise or a European river cruise.
Take your time
If you’re susceptible to fatigue, hot weather and travel can be a double-whammy. If you’re going to take a trip, therefore, try to build plenty of rest time into your itinerary. Plan your activities during the times of day when you have the most energy. “Organize a slightly longer trip if possible so you don’t have to be in a hurry to visit a place or attraction,” advises vlogger Maytee Ramos, who was diagnosed with MS in 2015.
Do your homework
Because heat can deplete your energy more quickly when you have MS, it pays to think ahead and eliminate barriers that might further reduce your limited energy supply. If you’re flying, for example, Ramos recommends contacting your airline ahead of time to arrange for a complimentary wheelchair to transfer you between terminals. Likewise, if you’re traveling by train, you should contact the railway before your trip to confirm which train stations have working elevators.
Be sure to similarly contact hotels, restaurants, museums and attractions, suggests wheelchair user John Sage, who founded Houston-based Sage Traveling after experiencing a spinal cord injury in 2001. Because people have different definitions of “accessible,” he says, ask for photos or video of hotel rooms, bathrooms, elevators and building entrances to confirm that your destinations have the accommodations you need. And while you’re at it, check Google Maps’ Street View to see if the areas you’ll be visiting are flat and shaded or hilly and sunny. The latter might require extra planning, cooling gear or mobility aids.
Entrust travel agents, tour operators
Travel agents and local tour operators can be great resources for heat-intolerant travelers. Along with accessible accommodations and activities, travel agents can help you find a healthcare professional at your destination if you need one or arrange for you to be airlifted home in the event of a real emergency. If you make arrangements ahead of time, Sage says, local tour operators can give you a private guided tour on your first day to point out things like public restroom locations, accessible tourist attractions and local places that offer refuge from the heat in the form of air-conditioning or shade.
Keep track of toilets
If you’re a heat-sensitive tourist, you’ll need to drink lots of water — which inevitably will require lots of bathroom breaks. Be prepared by wearing protective undergarments and downloading restroom-finding apps to your phone or tablet, like Flushd, SitOrSquat and Airpnp. You might also want to scope out nearby fast-food restaurants in advance, suggests Sage, who says American chain restaurants typically have reliable, accessible toilets no matter what country they’re in.