ReadySetEnjoy

by Andy Vladimir

Several people have suggested I write about preparation for a trip. Traveling involves more hassle of one sort or another than staying at home and this goes double for those of us with neuromuscular diseases. Here are some general hints distilled from experienced travelers.

The Essentials

First, as a general principle you should always travel only with essentials.

Of course, essentials can encompass a pretty wide range of items. For example, I always carry a 2-foot, folding, aluminum ramp in a nylon case that I hang on the back of my scooter, even when I travel by air. This is useful for getting on and off curbs, and for entering restaurants and shops and homes of friends. I also carry a 5-foot ramp on road trips or to specific destinations where I know well need it. I have friends who travel with portable Hoyer lifts and oxygen.

Wheelchair users tell me they carry toolkits and, before leaving home, they check to see that everything is screwed tightly together. Its also a good idea to get your wheelchair serviced before you leave, and get the address and phone number of the nearest service center at your destination.

If youre on a cruise, theres a good possibility they can fix your chair onboard, but watch the process closely because personnel may be unfamiliar with your equipment. When flying, I carry documentation from the manufacturer of the batteries stating that theyre the nonspill kind permitted on airlines.

The Room

Always call to reserve your own hotel rooms unless your travel agent is experienced in travel for people with disabilities. Ask how many handicapped rooms the hotel has and whether any have roll-in showers. Then try to get the hotel to reserve a specific room on the basis of what they tell you. Some hotels will do it, others wont.

If you need an elevated toilet seat, you may find it difficult or impossible to rent one. I ask the hotel personnel if they have one, and if they dont, I bring my own. I also request an extra mattress or bring a set of bed leg extenders which raise the bed 6 inches.

On cruise ships I dont worry about these things. Handicapped cabins are always assigned when theyre reserved. Almost all cruise ships carry the toilet seats and extra mattresses.

Packing

My personal method of packing luggage is very simple. I call it the "look-in-every-drawer" system. I open every drawer in my dresser and if I see something that I think I should take along, then I put it on my bed; next, I take everything on my bed and put it in my suitcase. Then I go through my closet the same way.

Many people, however, prefer the more systematic approach of a packing checklist. There are several good ones on the Internet. Use a search engine like Google or Yahoo and enter the words "packing luggage."

The most complete one I found is Mats Henricons Universal Packing List, which you can customize (upl.codeq.info/customize). Its a good idea to think through your day after working through the checklist to ensure that you havent overlooked something.

Getting Around

A problem you often encounter when youre away from home (and its a big one) is local transportation. You must figure out this one in advance. When you land at an airport, what happens next? If you can fit into a regular cab or climb aboard a bus, you have no problem. But if you cant, recognize that every destination has different transportation options.

In many cities you can rent an accessible van from Wheelchair Getaways or one of its competitors. Although this is the costliest method, its also the most convenient. Theyll meet you at the airport with the van and pick it up there when you return it. In other places you can arrange for a van to pick you up and deliver you to your destination. Cruise lines will generally arrange to do this if you tell them you need an accessible transfer from the airport to the ship.

Cities vary greatly in their accessibility. Regular buses are fully wheelchair-accessible with lifts in cities like New York and Honolulu. Miami has accessible buses on some routes but not others. In London, most regular taxis are large enough to accommodate my scooter. Paris has accessible taxis, but you need to reserve them in advance. Washingtons accessible subway and rail system is a dream.

I often call the state or local tourism bureau to inquire about what transportation is available, or I ask at the hotel where Ill be staying. You can also check www.access-able.com.

Medical Needs

Finally, heres a word about medications.

Rule number one: Always carry the important ones with you so that youre covered if your bags get lost or delayed.

Rule number two: Know how to replace medications quickly if you lose them. One simple way is to make certain that your doctor has given you refill orders on all important drugs. Carry the phone number of your pharmacy with you. If you lose something, you can call the pharmacy and ask them to FedEx medications to you overnight. Or, identify the names of doctors (and even hospitals) in cities youll be going to. (Check the MDA clinic list.)

Its also a good idea to prepare for medical emergencies. Be sure you have information in your wallet or on your person about your condition, any special handling you require, and doctors to call so emergency personnel will know what to do in an accident. If youre traveling outside the United States, have the information translated into the local language.

Abroad, American embassies usually have a 24-hour emergency number and will tell you where to go if you need help. Once, in Rome, I couldnt reach the American embassy so I called the Irish one. They were terrific.

(Click here for a useful Quest story and list of resources about airlines regulations, security and equipment handling.)

 

Kennedy Space Center in Florida This fascinating attraction, three times the size of Manhattan, has enhanced its facilities for visitors with disabilities. With an ongoing schedule of live NASA launches; a remarkable collection of rockets, launch pads and aerospace technology; and special behind-the-scenes access to historical sites rarely open to the public, this place is worth a visit any time (besides, its located at Cape Canaveral, 45 minutes east of Orlando, home of Disney World).     Astronaut Story Musgrave greets a visitor to the Kennedy Space Center at Cape Canaveral.   The Kennedy Center now has a new fleet of wheelchair-accessible tour buses, and wheelchair lifts at both of its IMAX theatres, where companion seating has also improved sight lines for guests. If youre really a space nut, check out Project Interact, a two- to three-day career-development program that encourages students with disabilities to pursue careers in the sciences, mathematics and engineering fields. Students meet and interact with astronauts and engineers, participate in job-shadowing experiences and explore space station grounds via the NASA Up-Cloe tour. Since the programs inception last year, Kennedy Space Center has hosted more than 200 high school students with disabilities who have experienced the space exploration program. For more information on accessibility programs at Kennedy Space Center or to arrange reservations for guests with disabilities, call (321) 449-4364 or visit www.kennedyspacecenter.com.