While worries about the unknown can keep people with neuromuscular diseases from enjoying vacation travel, a number of people served by MDA find that the benefits far outweigh the discomforts. Even full-time reliance on a ventilator hasn't kept Lori Hinderer from crossing the ocean. Here, eight other avid travelers with neuromuscular diseases share their experiences and tips for great vacations. All agree that the keys to success are patience, a sense of humor, a positive outlook, imagination, flexibility -- and planning.

Rose Acampora, 22, and Dina Valicenti, 20, are students at Vista Community College in Berkeley, Calif. They met as children at an MDA summer camp in their home state of New Jersey. Both have spinal muscular atrophy and use power wheelchairs. On their 1994 spring break from school, they flew to San Diego with Robyn Levine, a friend who also works as their personal assistant.

Rose: We wanted to get away and go somewhere warm. We had a friend in San Diego we could stay with. We called the public transportation service before we left, and they sent us copies of bus maps and schedules. It was not quite as accessible as the Bay area but the buses were all accessible. It was a lot of fun.

They visited the famous San Diego Zoo, drove in a rental minivan to Los Angeles and toured Universal Studios, visited other friends, rode the trolley into Tijuana, Mexico, and enjoyed the boardwalk by the beach.

Dina: You always wonder how much you're really going to be able to do. I was surprised.

That experience was so successful that last November, Rose, Dina and Robyn took a Carnival cruise on the Mexican Riviera. They set sail in a spirit of adventure.

Rose: We didn't know what to expect. We didn't know if we would be able to get into the bathroom, what kind of shower situation there would be. But the people on the ship were willing to do whatever they could to make our cabin accessible. There was a six-inch step into the bathroom. Somebody came and built us a little ramp. There was a drain in the bathroom and a handheld shower, so we just took our showers in the middle of the bathroom.

Dina: To get on and off at ports, we went to the bottom level of the ship where they store all the garbage, and they put us on these (forklift cages) that raised us to ground level. It was a little odd but it was an experience.

Rose: At Cabo San Lucas, the ship stopped in the middle of the ocean and we couldn't get on the transfer boats that take passengers in. But we knew ahead of time that we wouldn't be able to do that.

At Puerto Vallarta and Mazatlan, they went ashore, saw the sights and shopped. They also enjoyed the cruise ship's wonderful cuisine.

Dina: I'd try any vacation, no matter how much of a pain it would be or if I wouldn't be able to shower for a couple of days. I think you should try and experience the most you can.

TIPS FOR A POSITIVE ATTITUDE

Rose: You just can't go around saying, Oh well, we can't do this. After all, we paid money to enjoy it, just like everybody else.

Barbara Babbitt of Houston is also a big fan of cruises. Until retiring from her job as a ticket agent with Delta Airlines two and a half years ago, she traveled several times a year, seeing the world with her mother or a friend.

A cruise is so easy. On a cruise ship, you spend a week in the same surroundings and the people get to know you. If you need help, there's always help. Cruise ships are really getting updated. The newer ships are much better.

After her condition was diagnosed as SMA about 20 years ago, Babbitt continued traveling with tour groups, using a walker and later a manual wheelchair. She now uses a power chair.

That's when I could get on and off a bus. When it got more difficult, Mother and I continued to take tours, and she would help me and all the men on the bus would try to help me. I just kept going.

If you take a tour group and they know you're handicapped, that's fine. Otherwise, you have to scout around and find things out for yourself. Tours are real nice because you become friends with other people and they become familiar with your needs.

Barbara advises a planned tour or a cruise as a beginning vacation for someone with a neuromuscular disease. A large city in the United States would be easy to see without a guide, using public transportation and taxis, she said. Many cities now have taxis that are accessible to power wheelchairs.

Barbara recalls many memorable trips. On yearly trips to London, she would use the same cab driver throughout her stay, to simplify dealing with her walker or wheelchair. In France, taxis charged an extra $1 for her walker, calling it luggage.

No matter where you go, you have to make sacrifices from your normal routine. Especially when you travel in Europe or the Orient, it's not going to be the same. We have gotten ourselves into some pickles.

In Moscow, she couldn't climb the steps to board the bus that met the plane. After conveying this information to the personnel by gestures, Barbara and her mother were left standing on the tarmac in the dark. Soon, an ambulance arrived and took them to the baggage claim area.

Travel has certainly broadened my knowledge of how other people live and other cultures. I've seen changes in the world and I've made wonderful friends. It's extremely good for you, mentally stimulating, to change your atmosphere a little bit. I'm adventurous. I like to show that you can still be a regular person even though you're in a wheelchair.

TIPS FOR WORLDWIDE ADVENTURE

Go with a friend. I would make sure I had an able-bodied person with me, to open doors, if nothing else.

And have a good sense of humor. Go with the flow.

Jan Michalski of Troy, Mich., and his wife, Ursula, like tours geared for groups of people with disabilities. Through one such organization, Flying Wheels, they've been to Spain, Portugal, Italy, Germany, Austria, France, the Scandinavian countries and Israel, and this fall, they plan to go to Egypt.

We feel comfortable traveling to the Caribbean islands or Hawaii on our own. But we wanted to do some things that were a little more exotic without running into problems that would make it more frustrating than fun. We were concerned about the language problem, hotels and getting around in the cities.

Flying Wheels knows which hotels are accessible, how to handle things with the airlines and with tour operators in different cities. They know where they can park and where they can take the buses. On a lot of these tours, you're required to take a manual chair. The power chair doesn't do you any good in places where there's cobblestones and stairs because nobody can lift the power chair. Occasionally I've seen people with power chairs or scooters.

There are a lot of difficulties in travel. You've got to really want to have that experience. You've got to be very desirous of seeing things in order to put up with the inconvenience.

You learn what to take. If you're going to be on cobblestones, you take straps to tie your legs to the footrests with. You bring repair things for the wheelchair, transfer boards. You learn to pack effectively, and not take a lot of luggage or things you may not need.

The major drawback of tours like those the Michalskis enjoy is cost. Overseas tours can cost from $2,000 to $4,000 a person plus airfare, depending on the destination.

I'm kind of unique in that I have limb-girdle muscular dystrophy, which has allowed me enough strength and flexibility to pursue a good career as an accountant.

A lot of people go on their own with tour groups. Generally I've found, unless you have upper-body strength, you need to have somebody with you. If you don't, you don't get the full enjoyment.

TIPS FOR INTERNATIONAL TRAVEL

Start with trips that are more comfortable, to a country like Germany which is used to dealing with people with disabilities.

Rather than using a local travel agent, deal with tour service directly.

Leslie Washburn, 28, a graduate student in counseling at the University of New Hampshire in Dover, loves the outdoors as well as city travel. Her leisure hours, including her vacations, are filled with canoeing, rowing, swimming, bicycling and camping.

I like canoeing because you can actually fold a manual wheelchair and take it with you, depending on the size of the canoe. You don't have to feel stranded once you get where you're going. Canoes can be adapted, with the seats lowered, for more stability.

Leslie prefers the spontaneous approach to travel, whether driving through Europe with her fiancee, Hugh Stafford, or on a camping weekend.

Being outdoors has psychological benefits. The better attitude I have and the better I feel about things, the better it is for me in general. Doing things like canoeing and swimming has kept me limber and flexible and helped keep my weight down.

Whether you're tenting or camping out, you're going to want to use services at national parks and state parks. They're getting better about putting in fireplaces where you don't have to reach down and accessible bathrooms.

Being in the woods does kind of wreak havoc on your wheelchair. It's a lot of wear and tear on the tires and the frame.

Leslie received MDA's 1993 National Personal Achievement Award because of her leadership of recreational programs for people with disabilities. She's served as president of Northeast Passage, a group providing activities such as kayaking, scuba diving, skiing and canoeing for people with and without disabilities.

You have to be flexible. You have to be willing to be piggybacked. I've always found that if there's something I really want to do, we can find a way to do it.

As a kid, my parents had a summer cabin up in Maine. It was very rustic, with no electricity, no running water. It was an effort for my parents to help me and my older brother, Andy, who also has MD, do things up there, go fishing and swimming. I'm glad they did it. I remember never missing TV. I could be outdoors all day long and I just loved it.

TIPS FOR ENJOYING THE OUTDOORS

One of the best things my parents did was not to be overprotective of us. Parents should try not to be too frightened of kids' roughhousing or falling down within reason.

For adults with neuromuscular diseases, think about your own comfort level. Be aware of things you're going to need. Be willing to try things but be specific about how somebody can help you if they need to.

In recreational programs, tell specifically what you can and can't do. Some instructors can't understand that when I fatigue I don't just bounce back in a couple of hours.

Kathy Toth of Chesterfield, Mo., a suburb of St. Louis, finds that vacation travel provides many benefits for her family, including Michael, 13, who has Duchenne muscular dystrophy.

The family takes at least one vacation a year. For a trip to Washington, D.C., this summer, they bought a larger van that allows Michael, who recently had spinal fusion surgery, to sit in his wheelchair while Kathy or her husband, Steve, is driving. The van has a lift that Michael can operate himself. In past years, they've flown to California, but haven't tried flying since Michael began using a power wheelchair.

Their vacations have had varying degrees of success.

We went to Disney World (in Orlando, Fla.) in 1994. It was fine, very accommodating. We probably went on twice as many rides as anyone because the lines for people in wheelchairs were shorter.

Three years ago, the Toths drove to Rocky Mountain National Park in Colorado and met some friends who drove from California. They fished, hiked and enjoyed the outdoors. But the family was disappointed on a trip to Chicago when Michael's wheelchair couldn't go on the submarine or the coal mine ride at the Museum of Science and Industry.

On family vacations, Michael and his sisters, Sara, 15, and Angie, 11, take turns choosing an activity for the day.

On vacation we pretty much do things together. Generally, if he can't be included, we don't do it.

The girls are real patient with him. They realize he takes longer and they have to wait for him. At the same time, Michael has to wait and let them play Goofy Golf.

TIPS FOR FAMILY VACATIONS

Almost anything is doable. A city works out better for us.

Don't try to pack a lot of things into one day. It takes time to get ready.

If you never go out to a movie at home, then going on a trip is going to be harder.

Detailed planning paid off for Ron Brown and Karen Lucas of Sacramento, Calif., who went to Hawaii in August 1994. They left nothing to chance and, sporting a "Just Married" sign on Ron's power wheelchair, had a perfect honeymoon.

Karen: We started planning for Hawaii about a year before the wedding. We got brochures and talked to travel agents to find a destination that was wheelchair-accessible. My number one concern was that wherever we went he would be able to walk with me. I did not want my husband to be in a setting that he could not fully enjoy.

Ron: We made some phone calls to Hawaii and wrote to all the independent living centers in the area and got brochures for attractions and transportation services.

After deciding to fly on United Airlines, Karen, who has a disability but is ambulatory, went to United's local office and had the staff find a copy of the federal Air Carriers Act, which spells out the regulations on flights with wheelchairs. It's available from the U.S. Department of Transportation.

Ron: With a lot of persistence and backup information, we were prepared to prove that the wide-body plane, a 747, does not require taking my chair apart. They were able to store it upright in the baggage hold, and it was ready to go when we arrived.

Ron, MDA's 1994 National Personal Achievement Award winner, has SMA. On other flights, he's been required to remove the batteries from his power wheelchair so they can be packed separately to avoid spilling, then arrived at his destination to find there's no one available who can reassemble the chair.

By driving to San Francisco and flying to Honolulu from there, the Browns saved about $500 and also avoided traveling on a smaller plane that would have required dismantling the wheelchair.

They reserved a van with a ramp, which was waiting for them at the Honolulu airport. Planning also helped the couple find a hotel room. It had a fully accessible bathroom, but...

Ron: Because of the way they had the furniture, I couldn't get by the bed and chest of drawers. They forgot that the person coming in the room was using a wheelchair and wouldn't be able to get through the space. We called the captain, and they came up and fixed it. Everything else was fine.

Sightseeing was also a big success. A dinner excursion on a cruise ship, a luau and evening's entertainment at the Polynesian Cultural Center, the International Marketplace, a sidewalk by the ocean all were highlights and fully accessible.

TIPS FOR TRIP PLANNING

Ron: It's a real bummer to go somewhere and find out you can't get in. I never go anywhere without checking ahead of time. If I have to make a bunch of long distance calls, I make the calls.

Karen: Bring an electrical plug adapter for your battery charger, and put the charger in a small bag as a carryon.

Ron: Mark the battery cables on your wheelchair. Sometimes the airlines disconnect everything. And get to the airport a minimum of an hour ahead of time.

Paul Duke and his parents know that "accessible" can have as many meanings as interpreters. Bill, Cheryl and Paul, of Woodford, Va., operate The Opening Door, a nonprofit organization that promotes improved accessibility for travelers with disabilities.

Cheryl: The travel industry still sees people with disabilities as liabilities, not as consumers with money to spend. But it's a tremendous market.

Attractions have made more of a good faith effort to improve accessibility than the lodging industry. One of the best examples is Monticello in Charlottesville, Va., Thomas Jefferson's home, which has been made accessible without compromising the historical authenticity.

Paul: The Chincoteague National Wildlife Refuge on the eastern shore of Maryland and Virginia has paved bike paths that go out into the marshland, where you can watch all kinds of birds and wildlife. Right next to it, Assateague Island National Seashore (populated by wild ponies) has a boardwalk with a ramp to the beach. They'll put rubber mats down on the beach so your wheelchair won't get stuck.

Paul, 25, has Duchenne muscular dystrophy and uses a power wheelchair and ventilator full time. He has traveled with his parents and sister since he was a child, serving as the "guinea pig" for the travel guides the family wrote, such as "The Virginia Travel Guide for the Disabled" and "The New Mexico Travel Guide for the Disabled."

Paul: I'm not always willing to be daring. But when I get there, I really enjoy it. As a kid, there weren't that many places that were accessible.

Cheryl: Our rule was, if Paul can't get in, none of us went in.

TIPS FOR ENSURING ACCESSIBILITY

Cheryl: Don't be afraid to tell people, hey, I'm a consumer, I'm paying money, and if you want my business this is what you need to do. Have a list of questions when you call about the accommodations. Request specific information, avoid yes-no questions, be aggressive and get it in writing.

It's important that parents of a child with a disability do things they enjoy, knowing it is going to take more time and energy. You'll live a more ordinary and fulfilling lifestyle, and you'll teach your child to meet challenges head on.

RESOURCES FOR A GREAT VACATION

The experienced travelers interviewed for this article all emphasized the importance of careful planning. This means asking the right questions of the right people. For example, if you call a hotel chain's reservation line and say you want a wheelchair-accessible room in a certain city, you could be in for a rude surprise. A room that falls short of your standards or isn't accessible at all.

To be sure you get what you need, call the hotel itself and speak to a manager. Ask about each feature that concerns you: door width, bathroom door width, steps from the parking lot to the room, shower chairs, etc. Be prepared to explain your requirements in detail to someone who may never have dealt with these questions. If you make a reservation, get the room number and written confirmation spelling out the room's features.

Take the same approach with airlines, cruise ships, tourist sites, meeting sites, quarantines on service dogs at some overseas locations, local transportation, local personal assistant services and other needs. Persistence in advance lets you leave your worries at home.

Books

Directory of Travel Agencies for the Disabled, Travel for the Disabled, and Wheels and Waves: A Cruise-Ferry Guide for the Physically Handicapped by Genie & George Aroyan, Twin Peaks Press, (800) 637-2256.

Easy Access to National Parks: The Sierra Club Guide for People with Disabilities by Wendy Roth and Michael Tompane, Sierra Club Books, (800) 935-1056.

Describes in detail accessibility and other features of 50 national parks, and lists groups providing outdoor recreation for people with disabilities.

Great American Vacations for Travelers with Disabilities: A Fodor's Vacation Planner, Fodor's Travel Publications, (800) 533-6478.

Describes 48 U.S. cities, national parks and other vacation locations; also lists hotels, airlines, agencies, state and city tourism offices, other resources; includes section on planning trips and questions to ask.

Handicapped in Walt Disney World: A Guide for Everyone by Peter Smith, Southpark Publishing Group, (214) 296-5657.

The Real Guide: Able to Travel: True Stories by and for People with Disabilities by Alison Walsh and Peg Smith, Viking/Penguin, (212) 366-2000.

Organizations

Accessible Journeys, (800) TINGLES. Worldwide tours.

Flying Wheels Travel, (800) 535-6790. Worldwide tours.

Mobility International USA, (503) 343-1284. International travel and student exchange programs.

Northeast Passage, Chapter of Disabled Sports U.S.A., Durham, NH. Outdoor recreation in New England.

Travelin' Talk, (615) 552-6670. Newsletter and network of travelers.

Very Special Traveler, (410) 635-2881. Newsletter.

Wilderness Inquiry Inc., (800) 728-0719. Outdoor recreationand adventures for people of all abilities.

Destinations

Most states and cities have accessibility guides. Check with the state's division of tourism or the city's convention and visitors bureau.

National Park Service accessibility guides to individual parks, (202) 343-3674.

The Virginia Travel Guide for the Disabled and The New Mexico Travel Guide for the Disabled, The Opening Door Inc., 633-6752.

Van Rental

Directory of Accessible Van Rentals, Twin Peaks Press, (800) 637-2256.

Disabled Driver's Mobility Guide, American Automobile Association, (407) 444-7961.

Wheelchair Getaways, (800) 642-2042.

Wheelers Accessible Van Rentals, (800) 456-1371.