Two to three times a year Karen Utley, who lives in Clute, TX, boards a plane with her now 10-year-old daughter, Samantha, to visit family. Samantha loves to fly, and her mom delights in seeing how much her daughter enjoys the travel, especially trips to the ocean. But travel for Karen and Samantha is hardly a cinch. Samantha, who has CDKL5, a rare genetic form of epilepsy, has two or more seizures each week and requires a feeding tube and a wheelchair some of the time. Yet, despite these complexities, Karen packs the needed supplies, including liquid food for the feeding tube, medications, and Samantha's wheelchair, and sets off on their trips. “I want us to experience life fully and even with the extra packing and planning, travel makes us happy,” says Karen.
The Utleys are in good company. Each year people with a broad range of neurologic conditions—from multiple sclerosis (MS) and stroke to epilepsy and dementia—embark on trips from local jaunts to exotic adventures, taking into account any special needs. “I encourage my patients who can to travel,” says John Ferro, MD, FAAN, a neurologist at Vassar Brothers Medical Center in Poughkeepsie, NY, “but I also urge them to accommodate their needs so they come home energized and not set back.”
To ensure your next trip does just that, follow this 10-point plan.
1. VISIT YOUR DOCTOR
Schedule an appointment with your neurologist, says Dr. Ferro. If you've had any physical changes or new symptoms such as fatigue or incontinence since your last visit, your doctor can adjust your medication. You can also discuss specific precautions, says Dr. Ferro. For example, if you have Parkinson's disease you'll want to stick to your normal sleep routine since fatigue increases the potential for falls. Or if you have MS, you'll want to avoid getting overheated, which can exacerbate symptoms, says Barbara Giesser, MD, FAAN, professor of clinical neurology at the David Geffen School of Medicine at UCLA. You can also ask your doctor for the name of a doctor or hospital where you'll be traveling in case of an emergency. And be sure the medications and other items listed on your patient portal are up-to-date so they can be accessed remotely, if necessary. Most importantly, a visit gives you and your doctor a chance to discuss whether you should postpone or amend your trip.
2. ORGANIZE YOUR MEDICATIONS
Be sure your medications and refill orders at the pharmacy are current. If you'll be in a different time zone, ask your doctor or pharmacist for help scheduling your pills, especially in the first and last days of the trip. Also ask what to do if you miss a dose. Make a list of the generic names of your drugs; if you lose any while in a foreign country, you're more likely to find the drugs by their generic names. And store your medication in your carry-on baggage, advises Dr. Giesser. If your checked luggage gets lost, you'll have your drugs with you. Find out if medications or vaccines are required for your destination or if you should pack an antibiotic in case of an infection.
3. DO YOUR RESEARCH
Explore websites about travel for people with disabilities: Long lists of travel sites are maintained by the Society for Accessible Travel and Hospitality (http://sath.org) and the Disabled Travelers Guide to the World (http://disabledtravelersguide.com), created by Nate and Nancy Berger. Nancy, now in her seventies, had multiple strokes a couple of decades ago and cannot walk or use her hands. Yet, until her health began to decline three years ago, she and Nate had visited seven continents. Their website, which is continually updated, and a downloadable book (http://bit.ly/DTG-Book) offer details on how to plan and undertake trips to dozens of countries. Patient organizations such as the Parkinson's Foundation, Epilepsy Foundation, and Christopher and Dana Reeve Foundation also offer tip sheets. The Reeve Foundation, for example, suggests requesting a seat with removable armrests, which can make it easier to be transferred to the seat from a wheelchair. If that seat is in the same cabin as the ticket you purchased—economy, for example—there is usually no surcharge for someone with a disability. However, if the aircraft equipment is changed, the airline cannot guarantee that seat.
4. PLAN AHEAD
Call the customer service numbers for every place you'll go, from airlines and bus stations to restaurants and national parks, and discuss logistics, suggests Jill McClure, an information specialist at the Parkinson's Foundation. Some airlines, for example, limit the size and weight of wheelchairs, although they can sometimes store one wheelchair on board, depending on size. You generally can't reserve that wheelchair space online, but getting to the gate early can help improve your chances. For a summary of airline services for people with disabilities, visit http://bit.ly/CheapFlights-Disabilities, but also double check with the airlines themselves in case there have been changes. For a general travel checklist from the US State Department, which includes accessibility information for many countries, go to http://bit.ly/StateDept-Travel-Disabilities.
5. PACK YOUR PAPERWORK
Like all travelers, you need the usual papers when traveling overseas, such as passports, visas, special IDs if you're a senior, veteran, or student, and your itinerary with all your confirmation numbers. As a traveler with a disability, you'll also need a list of all your medications, a description of your condition, medical supplies you carry, and your limitations signed by your doctor, which the Transportation Security Administration (TSA) and foreign security agencies may want to see. You may also need letters or emails from hotels, airlines, cruises, cab companies, and recreation sites confirming their disability services. (These confirmation letters can help you get backup services—such as an accessible room at another hotel—if what you were promised is not available.)
6. LOOK FOR SAVINGS
By booking early, you improve your chances of reserving accessible hotel rooms and cruise berths—and securing lower prices. Ask about travel options. Amtrak offers 15 percent discounts on many fares for both travelers with disabilities and a companion, for example. Many tourist attractions offer discounted or free admission to travelers with disabilities and at least one companion. Check websites for up-to-date information. For expenses that don't come with a disability discount make sure you have a current AARP or AAA card as well as student, military, or veteran IDs, if applicable.
7. TRAVEL WITH A FRIEND OR TWO
Traveling with a friend or family member may be critical, not just a good idea, especially if it's your first trip. Karen Jackson, 56, of Alexandria, VA, a retired athletic trainer and administrator who has MS, says she usually travels with a friend both for the fun factor and the unexpected needs. “On a recent trip to Chicago, the hotel bed was higher than I could climb onto,” she says, “and I needed my friend to help me up.” Her friend also helped with storing Jackson's wheelchair before takeoff.
8. ALLOW TIME BEFORE TAKEOFF
Travelers with disabilities should allow more than the recommended time at the airport for domestic and international flights, especially if you'll be getting a wheelchair at the airport or stowing one in cargo. If you have time to spare, you may be able to buy a day pass for an airline club, which often allows you to store your carry-on luggage. Clubs also have accessible bathrooms, snacks and drinks, and outlets to charge devices. If you purchase the pass at check-in, you may pay less.
9. CHECK OR BORROW A WHEELCHAIR
Many travelers have their own system for folding and storing their wheelchair before flying. Karen Jackson asks to meet the person in charge of cargo to show him or her how to fold the chair, which reduces the chances it will be broken at her destination. She also wraps the joystick in bubble wrap, and takes the seat cushion with her on the plane. If you have any problems with your wheelchair, or any other travel concerns, look for the “chief resolution officer,” advises Jani Nayar, executive coordinator of the Society for Accessible Travel and Hospitality. Since travel can be more fatiguing than your normal routine, consider using assistive devices such as canes, walkers, and wheelchairs, even if you don't use them all the time, says McClure. You can request one at airports and often at recreation sites such as Disney World. For airports, request a wheelchair when you book your flight, says Nayar, then call the airline 48 hours ahead to be sure your request has been documented. You'll need to check in at the counter rather than at a ticket kiosk in order to meet the attendant with the chair.
10. SIGN UP FOR PRECHECK
Being in a wheelchair does not guarantee that you'll be able to cut a long security line, so for US airports consider applying for TSA PreCheck at http://tsa.gov/precheck. This prescreening program from the TSA requires an online application, a brief in-person interview, usually at a local airport, and an $85 fee. You may have to wait a few weeks to get an interview so apply early. In February 2017, 97 percent of TSA PreCheck members waited less than 5 minutes, according to the TSA, compared to 20 minutes on average for the regular line—which can be longer during busy times.
If you're traveling internationally, consider a Global Entry card from US Customs and Border Protection. It costs $100 for a five-year card but includes TSA PreCheck privileges and a likely shorter wait at Passport Control when you return to the United States.
If you're unable to get out of a wheelchair for the airport security screening, call TSA Cares at 855-787-2227 or email TSA-ContactCenter@tsa.dhs.gov at least 72 hours before your flight, advises Mike England, a TSA spokesman. This special office can answer questions about screening and medical supplies, including liquids, you can take with you. You can also ask for a passenger support specialist to meet you at the screening checkpoint to help with the process. And go to http://bit.ly/TSA-SpecialProcedures for information on what you can carry on board.
All this planning may seem daunting, but getting each piece in place increases the chance for a more enjoyable and seamless trip, says Jackson. And the extra effort is worth it, she says. Dr. Giesser agrees. “Don't let disease limit you,” she says. “If you possibly can, get good medical advice, plan accordingly, then go ahead and get on the road.”