If you’re a person with multiple sclerosis (MS) who uses a wheelchair, you’re familiar with the day-to-day challenges and inconveniences that this can present — from locating ramps and accessible public restrooms to navigating your way around the grocery store. But for better or worse, you’ve probably developed a routine that helps you avoid the most potentially inconvenient aspects of using a wheelchair.

Your normal routine, of course, gets thrown out the window when you travel — which is exactly why many people travel for leisure and adventure. But this also means that if you use a wheelchair, you’ll need to do some extra work to make sure that inconveniences don’t pile up and ruin your business trip, visit, or vacation.

Whether you’re an occasional or seasoned traveler, you may benefit from the advice of other people with multiple sclerosis who have traveled with a wheelchair — both by following useful tips they’ve learned, and by avoiding some of the mistakes they’ve made.

Should You Use a Travel Agent?

If you’re planning a vacation that involves more than just a simple stay at one location, it may be a good idea to contact a travel agent who specializes in travel for people with disabilities, says Shelley Peterman Schwarz, an author in Madison, Wisconsin, who has written several guides for people with MS and other conditions, including Multiple Sclerosis: Tips and Strategies for Making Life Easier.

While using such an agent is more expensive than booking a trip yourself or going through a traditional travel agent, “They offer services that other places do not,” says Schwarz, including arranging accessible travel options both at and between destinations on your trip.

A travel agent may be an especially good choice if you’re traveling abroad, since there may be language, currency, and cultural differences that make it more difficult for you to arrange lodging, transportation, and activities.

Keep in mind that while there may be benefits to dealing with a local travel agent, you may be able to find an agent outside your community who has more experience helping clients with disabilities, especially if you don’t live in a big city.

Arranging Accessible Lodging

If you’re booking a hotel yourself, says Schwarz, “You have to be very clear about what you need” — which means not just requesting a handicapped-accessible room, but also clarifying that you use a wheelchair, whether you need a barrier-free shower, and what help, if any, you’ll need checking in and out of the hotel.

Asking questions can help a lot, says Mitch Sturgeon, of Portland, Maine, who was diagnosed with primary-progressive MS at age 38 in 2001. “Any time I book a room of any kind, I’m a pest,” he says, adding that mentioning past hotel “horror stories” sometimes makes hotel staff more understanding and cooperative.

“Each hotel’s definition of a wheelchair-accessible room is different,” says Sturgeon, so he asks about details, such as how much space there is around the bed, whether there are any steps around the shower, and what the hotel’s entrances are like. He also asks if it’s possible to see photos of the room, which has had a mixed rate of success.

While charming, older hotels may offer a certain allure, Schwarz notes that newer hotels are much more likely to be wheelchair-friendly than historic ones. Once, she couldn’t even get her motorized scooter through the front door of a hotel in Old Town Alexandria, Virginia.

At another hotel, Schwarz reserved a wheelchair-accessible room but found that she couldn’t even get into the bathroom. When she contacted the front desk about the problem, she found out that she had been given a room for people with hearing impairments.

“You have to be very willing to work with a system that isn’t perfect,” says Schwarz. “No matter how many questions you ask, be aware that there are going to be glitches.”

Air Travel Travails

If you're driving your own car or accessible van to your destination, transportation probably won’t be much of an issue throughout your trip, Schwarz notes. But if you’ll be taking an airplane, you should be prepared for a lengthy, involved travel process.

The most important rule of thumb when you get to the airport, according to Schwarz: “You have to be very clear about what you need and how you want them to help you. You cannot expect them to do the brainwork.”

This means telling the airline how much assistance you’ll need getting from your wheelchair to your seat on the plane. As Schwarz notes, you can use your wheelchair all the way up to the entrance of the airplane itself, after which airline staff will take your chair to the checked baggage area.

At this point, if you can walk short distances on your own or with a cane, you may need only one person to take your arm or help guide you to your seat. But if you can’t walk, crew members will help carry you to your seat. “For me, it’s a total lift,” says Schwarz. “Thankfully, they’re being trained these days in how to do it.”

Once you’re in your seat, if you need to get up to use the lavatory, you’ll be able to use the onboard wheelchair that every plane has. In Schwarz’s case, since she can’t stand on her own, her husband has to lift her into the chair, then go with her into the lavatory.

If you use a large, powered wheelchair and will be traveling by air, it’s worth looking into taking a smaller wheelchair or scooter instead, says Jennifer Digmann, of Mount Pleasant, Michigan, who was diagnosed with MS at age 23 in 1997. “Everyone who works for the airline, they’re troubled” if she brings her regular chair, she says. So instead, she travels with an older, smaller motorized chair, which is also better for navigating unknown territory, like restaurants, hotel rooms, and restrooms.

When Sturgeon travels by air, he uses his regular, large motorized wheelchair — and sometimes even takes along two wheelchairs and a wheelchair lift, he says. To make sure that the airline is prepared for all of this, he’ll sometimes call ahead as many as three times in the day or so before his flight leaves.

When discussing the boarding process with airline staff, “Really give them detail,” says Sturgeon. “I’ll say, ‘These are my traveling companions. He’s going to pull on my legs, he’s going to pull on my arms, and you’re going to push.’”

Sturgeon, with his companions, also takes any breakable parts off his wheelchair and brings them onto the plane with him. His companions then cover his chair in bubble wrap and duct tape, and affix signs that point to the brakes and seat adjustment mechanism, as well as one with his cellphone number, in case the crew has any questions.

Even if your operation isn’t quite as elaborate, it’s critical to arrive very early and recognize that the travel process will be complicated. “Pack your patience,” says Digmann. “We’re the first ones on the airplane, and we’re the last ones off the airplane.”

Getting Around at Your Destination

If you’re traveling to a large city, Schwarz notes, it’s a good idea to look into the accessibility of public transportation, which varies widely from city to city but has been getting better consistently. “As the years go on, buses become more and more accessible, because they’re mandated to have wheelchair lifts on them,” she says.

In some cities, Schwarz will take an accessible taxi, which is usually offered by a company or companies separately from the regular taxi system. “The cabs have been fantastic” overall, she says, adding that it’s important to research how the system works before you arrive in the city.

Another option may be to rent an accessible van at your destination, which Digmann and her husband once did to avoid a short connecting flight in a small airplane, since it’s extremely difficult for her to board small planes. This option can be expensive — as much as $150 per day — but it also offers a measure of convenience that other transportation options may not.

Sturgeon tends to use a mix of transportation modes when he travels, doing online research ahead of time to find out what his options are. “If I’m going to Los Angeles, they have wheelchair-accessible taxis, wheelchair-accessible public transportation, and several companies that you can rent vans from,” he says.

But never assume, says Sturgeon, that an unfamiliar city will offer the mode of accessible transportation you’re looking for. “You have to verify all of these things,” he says.

Don’t forget that no matter where you’re staying, you’ll have a mode of transportation readily available: your wheelchair itself. If the option is available, “Get a hotel in a location that’s easy to get to” from activities and attractions, Schwarz suggests. That way, she says, “you don’t need any other transportation.”