Take the bite out of traveling this season with a bit of planning and some tried-and-true tips.
by Maureen Salamon
Shari Short, 43, a comedian from Wilmington, Delaware, who lives with multiple sclerosis, knows it’s no joking matter to prepare for the rigors of road trips or plane journeys during the winter holidays.
Long hours in transit, endless security lines, and traffic and flight delays are frustrating. Add in symptoms like fatigue and impaired mobility, and people with MS may wonder why they ever left the comforts of home, Short says.
Diagnosed with MS in 2008, Short’s wry sense of humor helped her adjust—eventually—to her mobility issues. Now she doesn’t hesitate to ask for a wheelchair at airports to avoid prolonged periods of standing in line and to help span the distance between gates. “By doing that, I’ve conserved so much of my energy that I can go shopping before my flight,” she quips.
Short’s insight was hard-earned. She has logged many miles in the air and on the road for travel related to her job in market research, as well as for professional speaking appearances, and opening for such performers as Shawn Colvin and Sandra Bernhard. She and several other experts have tips for holiday travelers with MS.
Choose your companions
Traveling with a trusted companion—such as a supportive family member or friend—is a tactic prized by many people with MS, including Short and Annan Paterson, 59, who has lived with progressive MS for the past six years. An ideal travel companion, Paterson says, is someone who has an understanding of MS and a giving attitude, rather than someone who is easily frustrated or in a hurry.
Both Paterson and Short say it’s important to discuss limitations and strengths with travel companions, hosts and visitors, both during transit and after arrival.
“One thing that helps is to talk with my travel companions ahead of time about our expectations,” says Paterson, a communications consultant from The Sea Ranch, California, who has also been a speaker in the Self-Advocacy Skills Training program offered by the National MS Society in the Northern California area. “Fatigue is a huge issue for me, and if I don’t take care of myself energy-wise, it’s easy for me to get mad or sad or anxious,” Paterson says. “When you add on the stresses of traveling and the holidays, it’s kind of a quadruple whammy.”
Short offers common-sense advice for making her needs known, both to travel companions and to her hosts at holiday destinations. “You need to communicate, ‘Here’s what I can do, what I can’t, what I need and what I don’t,’ ” Short says. “I just love the lack of any kind of awkwardness because I’ve put my situation out there. To me, that’s part of traveling—just like picking out restaurants.”
Where fatigue and jet lag meet
Even with the best communication, the nature of travel itself can create problems. Delays, rushed connections and schlepping luggage through an air terminal or train station are all enough to wear anyone out.
The best overall travel strategy is to pace yourself, says Dr. David E. Jones, an assistant professor of neurology at the University of Virginia.
Paterson practices that advice, saying she’s finally learned to acknowledge her limitations while traveling, rather than soldiering through and paying the price later.“In the past, I would schedule 45 minutes between connecting flights,” Paterson says. “Now I give myself two hours so I can sit down, have a light meal and close my eyes ina chair somewhere.”
As if the hectic pace of holiday travel wasn’t enough, many people commonly experience jet lag, a feeling of extreme tiredness that can occur when traveling rapidly across time zones. The science of jet lag hasn’t been widely studied, but the physical and psychological toll of crossing time zones seems to intensify MS-related fatigue and other symptoms, according to Dr. Jones.
“Jet lag can affect fatigue, appetite and concentration, and cause headaches or a feeling of malaise in anyone,” Dr. Jones adds. “And if you’re already dealing with MS fatigue, as up to 90 percent of people with MS are, it can be a compounding factor. Add in secondary issues like depression, sleep deprivation and holiday stress—when you don’t feel like you have enough time for everything that needs to be done—it can be a perfect storm.”
Dr. Jones says the best way to prevent jet lag is to minimize changes in the sleep-wake cycle. One way is by taking melatonin supplements—which help regulate this cycle—or by timing your light exposure so you gradually shift to the time zone you’re entering.
Dr. Jones also advises drinking plenty of water to combat dehydration (which can worsen jet lag), and consulting a doctor about using sleep aids if jet lag interferes with sleep. In general, he does not recommend planning to sleep on the plane, as it’s better to be well-rested before beginning your travels.
Preparation is key
Being prepared can help people with MS anticipate many of the other obstacles that can crop up when traveling.
“Buying your tickets well in advance, arranging your ride to the airport or train station, and figuring out what you’re going to pack, if you’ll need help with your luggage and whether you’ll need a wheelchair at the airport can all reduce the stress of leaving,” says Kathleen Costello, a nurse practitioner and associate vice president of Clinical Care at the Society. Reserving a wheelchair at the same time you purchase your airfare may be a wise move—even if you don’t ordinarily use one—because of the vast size of many airports, notes Dr. Jones.
People with MS and clinicians also recommend the following strategies to prepare for trips:
- Do your research: If you’re planning to take your battery-operated scooter to your destination, be aware that each airline has its own regulations. Call your airline well before your travel dates to learn itspolicies. If you’re traveling by train, visit amtrak.com/accessible-travel-services to learn the services Amtrak provides to travelers with disabilities, including wheelchair and scooter access. For more information on accessible travel, including by bus and car, search for the Society’s resource list, “Travel Resources,” at nationalMSsociety.org.
- Stay in touch: Consult your healthcare provider for guidance about how to best transport medications or fill prescriptions, and what to do if you experience an MS exacerbation while traveling.
- Keep calm and carry on: Pack your medications in a carry-on bag so that you will have them with you even if your flight is delayed, and keep injectables in an insulated pack. Currently, the Transportation Security Administration (TSA) requires travelers to inform TSA staff at the beginning of the security process if they are carrying liquid or injectable medications. However, as TSA regulations may change, visit tsa.gov ahead of your flight for the latest updates.
- Build in down time: When possible, schedule holiday activities during your usual times of least fatigue, and let your friends and family know that you’ll need time to nap, read, meditate or just relax.
- Shop smart: Save energy by purchasing holiday gifts or foods online and having them shipped to your destination, or asking relatives to shop for you.