Jan and Jim Sluiter enjoy Hanauma Bay on the island of Oahu, Hawaii, in November 2003. Jan Sluiter relaxes in a rented beach wheelchair.
Retired nurse Jan Sluiter, of Cedar Falls, Iowa, received a diagnosis of ALS in 1988 and uses a power wheelchair. Sluiter, 55, and her husband, Jim, travel twice a year by van to Ontario, Canada, to see family. They’ve also flown to the Bahamas, Hawaii, Arizona, Florida and Washington and don’t plan to slow down.
Here’s some advice from Sluiter that’s helped make her travels more enjoyable:
- Always travel with your living will, for emergencies.
- Never book flights online or through a travel agency. Sluiter reserves through the airline’s headquarters (usually Northwest Airlines) to ensure they understand her needs. Before the flight, she calls the airline to confirm she’s coming.
- Choose flights that use jetways to avoid steps to the airplane. If there won’t be a jetway, Sluiter ensures there will be a forklift with a platform and a forklift operator to raise her in the chair up to the plane door.
- Arrange for an aisle seat near the front. If Sluiter can’t get a seat toward the front, airline employees are trained to take her down the aisle in a straightback wheelchair or aisle chair.
- Never take your power chair when traveling by air, to avoid damaging it. Sluiter checks her manual wheelchair at the gate instead of curbside or sending it through with the luggage. Somebody will bring her chair right to the front of the plane when it’s time to exit the aircraft.
- Allow at least an hour between connecting flights for gate changes. Wheelchair users are the last passengers off the plane.
- Call ahead to the rental car company to make sure the shuttle is wheelchair accessible. (Hertz has accessible shuttles.)
- Always reserve the hotel room in advance. Sluiter specifies her exact requirements. Of course, the bathroom has to be large enough and have a raised toilet seat and grab bars, but she also spells out that she wants a roll-in shower. She’s been happy with the Sheraton, Marriott, Holiday Inn Express, AmeriHost, AmericInn and Homestead Suites. Before leaving home, she calls again to double-check that her needs will be met.
Steve and Helene Nichols of Clifton, Va., drive all over the East Coast, and they’ve cruised Alaska, Bermuda, Russia, some Caribbean islands, the Panama Canal and the Hudson River. A retired computer network specialist, Steve, 54, has had ALS for 10 years and uses a power chair that he operates with a knee switch. He also has a tracheostomy and a feeding tube and uses a communication system to speak. Steve’s the 2005 MDA Personal Achievement Award recipient for the state of Virginia.
|Steve and Helene Nichols set sail for Bermuda from New York City in August 2004.
- Organization’s the key. Helene makes supply lists for all equipment needed for Steve’s care. The lists include everything from portable lifts to Steve’s eye-tracking communication device.
- Once the Nicholses are on a ship, all their supplies are easily available. There’s no need to haul them around because the hotel travels with them.
- Do your homework. The couple ask for specific accommodations such as a roll-in shower. Larger ships, they say, tend to be more accessible, with larger cabins and larger bathrooms, wheelchair-accessible entertainment and medical facilities. Steve and Helene ensure the ship docks in a port because transport boats to the ship are generally too small for the power chair. They’ve found Holland America and Royal Caribbean to be very accessible.
- Call ahead and make sure that there are vans with wheelchair tie-downs for any land travel.
- Don’t go on trips in the winter because of the risk of exposure to the flu.
- Get some help. A friend often travels with them, so that if Helene wants to do her own thing, their friend makes sure Steve is safe.
- When traveling in the United States, always carry the phone number of your MDA clinic doctor. When driving, the Nicholses carry a list of dealers that can help with their accessible van.
- Carry travel insurance at all times. The Nicholses are always prepared to evacuate the ship by medical transport and know ahead of time how to get off the ship in a medical emergency; travel insurance would help pay for it. The couple also carries extra health insurance forms.
- Don’t put it off. The Nicholses wish that they’d flown to Australia and other faraway destinations while Steve had greater mobility. They advise you to go to the distant places before your needs expand.
For more information on airport security, see “Leaving on a Jet Plane…,” in MDA’s magazine Quest, March/April 2003. To find out more about airplane travel in general, see “How to Fly Through the Air with the Greatest of Ease,” in Quest, April 2000. Quest’s regular column “To Boldly Go” explores accessible travel destinations.