More MS news articles for June 2001

Going mobile: A disability doesn't mean you can't travel - it just means more planning

http://www.post-gazette.com/healthscience/20010612htravel0602netp2.asp

Tuesday, June 12, 2001
By Anita Srikameswaran, Post-Gazette Staff Writer

For many people, travel health means remembering not to drink tap water in exotic locales, getting the required shots and packing hats and sun block. But for travelers who are disabled or have a chronic disease, trip preparation can demand the tactical skills and determination of a five-star general. This is particularly important entering the busy summer travel season, which may be fraught with more airline delays and travel snafus than ever.

At the very least, have a phone and don't be afraid to use it.

Traveling with a disability "just takes more planning," said Carol Randall, of Wheat Ridge, Colo., who has multiple sclerosis and uses a scooter. She and her husband produce Access-Able Travel Source, an Internet information site.

And contrary to stereotype, many disabled people are "both financially and physically able to travel," Randall added.

Make your list

The first step in travel preparation is to know what your needs are, said Adam Lloyd, a quadriplegic and editor of the Web site he dubbed Gimp on the Go in Bethesda, Md. For example, if you use a wheelchair, decide whether you need a roll-in shower and lowered light switches in your hotel room. Do you want to get to area attractions independently, or will you need to be driven to them?

"Make a list of the things that are going to be important to you on your trip and then start calling," Lloyd said.

Planning will probably take longer than it would for an able-bodied person.

"You may have to search two or three accommodations before you find the one that's right for you. Make a lot of phone calls, check off your list and when you find what fits you, go ahead and book."

Randall suggested getting clerks to describe the facilities and available equipment rather than letting them respond to questions with "yes" or "no." They may say, yes, there are shower benches, but may not know that some freestanding plastic shower seats are prone to tipping when a person is too close to the front edge.

Try faxing to the hotel pictures of common shower benches and have the staff identify what is provided.

Sometimes, it may be worth compromising, Lloyd said. Substituting a sink, washcloth and soapy water for a bath may be a small sacrifice worth making for a visit to famous places.

When making reservations for travel, whether by air, rail, waterway or road, tell agents what kinds of services you need.

"To expect that they would automatically accommodate the full spectrum without any advance knowledge is unrealistic," said former flight nurse Joan Sullivan Garrett, president and chief executive officer of MedAire Inc. in Phoenix. "Be up front about your illness or your disability so that everyone can work together."

The company provides MedLink, a medical consultation service, to USAirways, British Airways, Continental Airlines and others.

Lloyd suggested departing on the earliest flights to minimize the impact of delays elsewhere. Direct flights tend to be most practical, although some may prefer a stopover during long-distance travel because restrooms are more accessible in airports than in planes.

Check it twice

A few days before the trip begins, call back to confirm that the arrangements are in place.

Before heading to the airport, check that the flight is on time. Delays can present particular problems to travelers who are disabled or who use supplemental oxygen.

Unlike the able-bodied, a paralyzed person doesn't shift body weight while sitting, Lloyd said. After many hours in the same position, skin may break down over pressure points, which can lead to infections and other problems.

Arrive at the departure point early enough to make adjustments to wheelchairs, such as unhooking batteries. Tape dismantling and reassembling instructions onto equipment.

Because there are "horror stories" of airlines damaging equipment, Randall checks her scooter in at the gate.

"That way, they have to either take it around to an elevator or hand carry it below," she said. "It's treated different than [regular] baggage."

Keep medications and important devices with carry-on luggage so that it will be close at hand.

Garrett recalled the case of a paralyzed traveler who packed into his checked baggage the catheters needed to empty his bladder. His plane was delayed, but his luggage traveled on without him. Because the situation was medically dangerous, MedLink dispatched a nurse to catheterize the traveler in the airport restroom.

People who require extra oxygen at home will need it in a plane, where the cabin is pressurized to an altitude of about 8,000 feet. In fact, some people with heart or lung disease who don't routinely use supplemental oxygen may need it when flying.

"If they walk up a flight of stairs and are very short of breath, I can guarantee they will be short of breath during the flight," Garrett said.

Airlines are not responsible for providing oxygen tanks in the terminals. Those arrangements must be made by the traveler. Local oxygen suppliers may be part of a regional or national network or may be able to suggest resources in other cities.

Travel Web sites for the disabled often list companies who can provide oxygen services.

You can't take your own oxygen canisters on board. The Federal Aviation Administration requires that airlines provide the oxygen based on information from the passenger's doctor. It costs anywhere from $50 to $150 per leg, in part for coordination services like those of MedLink.

Typically, Garrett said, a few hours of extra oxygen are built into the order in case of flight delays and diversions. Ask the flight attendant to notify the airline representatives if you unexpectedly need oxygen or other assistance at your destination.

Trains, cruise ships and tour buses all have different rules for oxygen use, so check them out ahead of time.

Getting in and out of airplane seats may require assistance from airport staff. Tell them exactly how to do the transfers.

Transportation to the hotel from the airport or station requires planning, too. There are companies that rent accessible vans and bring them to disabled travelers at airports.

How the market looks

Air travel became more accommodating of disabled travelers with the passage in 1986 of the Air Carrier Access Act. In fact, the entire travel industry is slowly becoming more friendly.

"They're looking at this more as an issue of customer service, and the fact that this is a real market and a lucrative one," Randall said.

American Airlines recently began its SkyCaare program. For an hourly fee, a nurse will occupy a seat, discounted by 30 percent, next to the passenger who needs assistance. Other airlines may soon offer similar programs, Randall said.

Garrett said her company will be using a recently approved device that can measure a sick traveler's heart rate, blood pressure, oxygen level and heart rhythms and instantly sends the information to medical experts for assessment.

She said that in the future, airbuses that can carry more than 500 passengers will probably include medical bays and trained personnel.

In the meantime, the first-time or novice traveler may do well to follow the advice of the "Gimp on the Go," who said travel first to popular spots like Las Vegas or Disney theme parks, or somewhere near home.

As Lloyd put it, "Try to make things as familiar and safe as possible the first time out. Then as you get better traveling, you take bigger risks. Go to Europe and fly by the seat of your pants."

Getting help

Resources

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