Travel is an exciting way to broaden your horizons, whether you’re off on an adventure or simply visiting friends and family. But for people with multiple sclerosis, travel can be daunting. “There are many reasons why people with MS may be reluctant to travel,” says Debra Frankel, director of MS professional workforce development for the National Multiple Sclerosis Society. “They may have to worry about mobility issues and access to bathrooms, restaurants and hotel rooms.”
About MS
MS is an autoimmune disease that damages nerves in the spinal cord, brain and optic nerves. It occurs when the immune system mistakenly attacks the coating on the nerves — called myelin — as well as the nerve fibers themselves. That damage shorts out or slows the body’s ability to communicate, causing a long list of symptoms or secondary conditions, such as problems with muscles, walking, balance, bladder or bowel control, cognition, mood and vision.
People with MS are prone to extreme fatigue and overwhelming stress. They can also become overheated easily, which can cause a temporary flare-up of MS symptoms, a condition known as Uhthoff’s phenomenon. “Symptoms of this include reversible problems with vision; severe fatigue; weakness in the hand, foot or limb; and loss of core strength, which can predispose someone to falling,” says Dr. Elliot Frohman, a professor of neurology and director of the Multiple Sclerosis and Neuroimmunology Center at Dell Medical School at the University of Texas at Austin.
MS treatment typically involves medications that are given orally, by injection or by IV infusion. Some of the newer, more powerful medications help keep the immune system from attacking myelin, which then helps slow MS progression and reduce relapses. However, the drugs can also leave MS patients vulnerable to other infections, since the immune system is suppressed.
[See: How to Boost Your Immune System.]
How MS Complicates Travel
Even for the healthiest people, travel comes with frustration: planes and trains may run late, sitting in cramped seats may be uncomfortable and getting through security checkpoints can be difficult.
Those common challenges can create a perfect storm for MS patients. Take the risk of overheating or stress, for example: “You’re on the tarmac or you’re waiting at the gate and stressed out, and it’s hot, and 70 percent of MS patients don’t sweat adequately, and you get overheated,” Frohman says. “Then maybe your leg or foot won’t move because you have Uhthoff’s.”
Other common travel risks for MS patients include the following:
— Dehydration. “A lot of our patients purposely dehydrate themselves when they travel, so they won’t have to go to the bathroom frequently. They void before they travel, and then they don’t drink anything. They get a concentrated urine, which puts them at risk for a urinary tract infection,” Frohman says. “A UTI can lead to more MS symptoms and possibly serious complications.”
— Constipation. If you’re not staying hydrated, you may become constipated.
— Diarrhea. Drinking the water in some countries can lead to diarrhea, which can result in dehydration.
— Illness. “Planes are like large metal petri dishes. You’re breathing in the same air as 300 other people, but you’re taking immunosuppressants, so you have a risk of getting sick,” Frohman points out.
— Clearing security with medications. “If you’re traveling with injectable medications and an auto-injector, security may wonder if it’s a weapon,” Frohman warns.
— Clearing security with a leg stimulator to help you walk. “You can’t take it off or you’ll fall, but security may not know that,” Frohman says.
— Accessibility. You may encounter spaces that aren’t wheelchair- or scooter-friendly. “The room in the hotel may be easily accessible, but maybe there are stairs to get into a hotel lobby or restaurant,” Frankel says.
— The loss of medications. This could happen if you pack medication in your checked bag, and the bag doesn’t make it to your destination.
— Leg or arm spasms. These can be caused by stress or sitting in cramped spaces for long periods.
[See: 16 Ways Your Body Adjusts to a New Climate.]
Planning Helps
The best way to reduce risks and hassles when traveling is planning ahead. “You can’t just say, ‘I’ll go next week,’ hop on a plane and go. There can be a lot of planning required, particularly if you are traveling with a mobility device, from getting on the airplane to what happens when you get to your destination,” Frankel says.
She recommends taking advantage of the wealth of travel information available on the internet. For example, the National MS Society website offers travel tips. And there are numerous apps that list wheelchair-accessible restaurants, hotels and parks. Frankel recommends two apps: TripAdvisor and It’s Accessible.
Frohman emphasizes the importance of talking to your health care team well in advance of traveling. “If you know you’re going away and you need medications early or you need more of them, let the clinic know,” he says.
He also suggests getting a letter from your health care team that spells out your particular medical needs, such as medications, an auto-injector, leg brace, wheelchair or scooter. You can present that document at security checkpoints.
The Transportation Security Administration recommends calling the agency with questions at least several days ahead of travel if you have questions about screening procedures at security checkpoints.
Make sure your mode of travel can accommodate your needs as well. Remember to ask if you can roll your wheelchair or scooter onto an airplane, train or bus; how your wheelchair or scooter will be stored; and if you can get a seat near a bathroom.
Other Travel Tips
There are many important aspects of travel that you’ll need to address, depending on your individual needs. It may be helpful to have a family member or friend assist you with plans and then go with you on your trip to help coordinate transportation, get suitcases and contact a clinic if you get sick while you’re traveling.
Here are some other suggestions:
— Try to take a direct flight, so you don’t have to worry about connections.
— Once you get through airport security, use the restroom before boarding the plane, and buy cold liquids to bring on board.
— Take advantage of early boarding procedures.
— Keep your medications with you in a carry-on bag, so you won’t lose them.
— Consider a cruise. “It’s very attractive to someone with mobility limitations. Everything is in one place — restaurants, cabins, entertainment options and a spa,” Frankel says.
— Stay hydrated throughout your travel day and your trip.
— Perform simple stretches if you’ll be sitting for long periods to cut down on muscle spasms.
— Maintain reasonable expectations. “Don’t try to do 21 cities in 21 days,” Frankel offers.
— Bring cooling devices with you, such as seat pads, vests or cooling packs.
[See: 10 Lessons From Empowered Patients.]
Finally, don’t give up before you start. “You’ll have to be a determined traveler, but it’s well worth it,” Frankel says. “Travel and new experiences are important to your well-being and your quality of life.”
More from U.S. News
8 Ways Meditation Can Improve Your Life
9 Ways to Boost Your Immune System
11 Strategies for Staying Sober While Traveling
The Challenges of Travel for People With MS originally appeared on usnews.com
