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We provide you with articles on brain science, timely topics, and healthy living for those affected by neurologic challenges or seeking better brain health.  

By Orly Avitzur, MD, MBA, FAAN

These Globe Trotters Show How to Travel with a Disability

For these intrepid explorers with neurologic conditions, traveling with a wheelchair is just another way to hit the road.

Michael Glen's vehicle of choice is a hot-air balloon, which he has taken 1,000 feet above the ground on voyages all across the United States, Canada and Mexico.

Carole Zoom visited 22 countries last year, trekking through populated cities in China as well as remote islands off the coast of New Zealand.

Justin Skeesuck recently crossed the dangerous vertical terrain of the Spanish Pyrenees—4000 feet in elevation in one day—as part of a 500-mile journey across the Camino Trail. This legendary pilgrimage route has drawn people of all faiths for more than a thousand years.

Beyond their love for exotic travel, these three free spirits share one other thing in common: they are all confined to wheelchairs due to neurologic conditions. Neurology Now asked each of these explorers to give us advice on how to enjoy travel both close to and far from home.

Into the Clouds

Thirty-nine-year-old Michael Glen, of Phoenix, AZ, has been a paraplegic since a motor vehicle accident left him with a spinal cord injury at age 21. He caught the bug for air travel early in life from his father, a balloonist. In fact, Glen was able to fly a hot-air balloon solo by the time he was six.

A dedicated athlete, Glen played sports year-round until 1996, when a single-car rollover left him in a wheelchair. However, even while hospitalized for his injury, he never lost sight of his passion for hot-air ballooning and set a goal to earn his balloon-pilot license. The Federal Aviation Administration (FAA) denied his request several times because of his disability. Still he pushed on, and with the support of other balloonists and FAA employees who vouched for his physical ability and upper-body strength, he succeeded in getting his license in 2006, earning his title as the world's first paraplegic hot-air balloonist.

He also had to find a basket that allowed him to operate the controls sitting down. For that he found the Duo Chariot, which looks like a ski-lift chair and allows him to take one passenger up at a time.

Jason Skeesuck and family in mountain valley at Yosemite National Park
Justin Skeesuck with his wife, Kristin, and children (left to right) Jaden, Lauren and Noah in Yosemite National Park in 2012. (PHOTO COURTESY JUSTIN SKEESUCK)

Glen, who is on the road all summer long, stows his balloon and wheelchair in his Ford F-150 pickup truck with hand controls. He travels about 30,000 miles to various balloon shows during the summer and spends the rest of the year inspiring students and others to achieve their goals. He describes his flights on his Web site, rollingpilot.com, and hopes to raise money to purchase a basket that can accommodate wheelchairs and will take up to six people on flights.

"I get as much information ahead of time as I can," Glen says. Like all the travelers we consulted, he stressed the importance of preparation. For example, he calls each hotel ahead of time to make sure that a wheelchair-accessible room is available.

"It's also important to be willing to ask for help," Glen advises, recalling a recent trip to England when he unexpectedly encountered hotel steps with no ramp. Within seconds, several people offered to help carry him, no small feat given his 6'4", 220-pound frame and 20-pound wheelchair. "I consider myself an independent person, but despite that, I recognize that there are going to be times when I need help," he says.

Zooming Around the World

Maui-based artist Carole Zoom was on the road sightseeing for most of last year. Her journey included the remote South Island of New Zealand, where sheep outnumber people 10 to 1, and the Hainan Island off the southern coast of China, where she didn't see any other travelers in wheelchairs.

Carole Zoom and husband Patrick Carpenter on Great Wall of China
Carole Zoom with husband Patrick Carpenter at the Great Wall of China in 2013. (PHOTO BY JERED MOLINSKY/COURTESY CAROLE ZOOM)

Zoom, 48, was diagnosed with congenital muscular dystrophy at an early age. Her mother, a pathologist—a doctor who identifies diseases by studying cells and tissue—suspected that the young Zoom had a neuromuscular disorder, which affects the nerves controlling voluntary muscles. Congenital muscular dystrophy is a disease present at birth that causes weakness and degeneration of voluntary muscles.

At age 13, Zoom began using a manual wheelchair; at 15, she switched to an electric scooter. At 34, Zoom experienced a symptom common to these kinds of primary muscle disorders—diaphragmatic failure—when her diaphragm, a large muscle used for breathing, became weak. She has been using a ventilator ever since. "As long as I have enough battery power, I can travel anywhere," says Zoom, who carries extra batteries and emergency breathing equipment with her on trips.

Last year, Zoom traveled to 22 countries, including China, Taiwan, Hong Kong, South Korea, Australia, New Zealand, Iceland, Denmark, Germany, Belgium, Spain, and Ireland.

Zoom's fighting spirit was evident at a young age, she recalls, setting the stage for her first solo international trip to Belgium at the age of 15. Her determination kicks in when she encounters challenges on the road. She has been kicked off planes twice due to skittish pilots reluctant to take a ventilator-using passenger on board, and she has had to face other forms of discrimination on a regular basis.

"Each country has its own regulations when it comes to the rights of people with disabilities," she explains. In the United States, the Americans with Disabilities Act (ADA) provides protection, but the UN Convention on the Rights of Persons with Disabilities, a similar piece of legislation covering those rights internationally, has yet to pass. The U.S. Department of Transportation responds to discrimination by air carriers in areas other than employment under the Air Carrier Access Act.

"You can duplicate any situation you have at home when you travel," says Zoom, who encourages others to have no fear. "I'm one of the most severely disabled travelers. If I can do it, anyone can," she says.

Like Glen, Zoom recommends that you do rigorous research ahead of time. Find out exactly what to expect at your hotel, she says—the height of the bed, the bathroom's accessibility features, and whether there is a step to the front door. Zoom also tries to uncover as much as possible about local transportation, although not much has been documented about some of the more remote locations she's visited.

She was pleased to discover that high-speed trains in China are fully wheelchair accessible and that in Copenhagen, every passenger in a water taxi uses a ramp. But you can discover a great deal of information about most locations online, details such as whether the Great Wall of China can be navigated in its entirety by wheelchair (no), whether all the entrances to the Museum of Modern Art in New York City are wheelchair accessible (yes), and which cruise ships offer the best cabins for people with wheelchairs.

Traversing the Pyrenees

Neurology Now caught up with Justin Skeesuck by Skype from San Juan de Ortega, a Spanish town with a population of 18 that—as Skeesuck points out—nevertheless includes a hotel bar with Internet access, a church with a long-abandoned monastery, and a parish hostel. He is definitely a cup-half-full kind of guy. The WiFi in his room—which has no wheelchair accommodations—is spotty. Still, he feels like he's in the lap of luxury, he says, considering this is day 14 of his six-week journey across rock-studded mountains, dusty roads, and muddy trails. Skeesuck travels with his best friend, Patrick Gray, who helps lift him out of beds, rooms, and buildings along the journey, which is being chronicled for a documentary.

Skeesuck first developed neurologic symptoms at age 16, when he noticed weakness in his left foot. His condition evolved slowly over the next few years, moving up the leg. By his sophomore year of college he had lost control of his right foot as well, and was wearing leg braces. Initially misdiagnosed with amyotrophic lateral sclerosis (ALS, also called Lou Gehrig's disease), the weakness progressed to his waist over the course of several years, during which time he got married and had his first two children.

Justin Skeesuck in wheelchair and Patrick Gray at Monasterio de San Julian de Samos in Spain
Justin Skeesuck (in wheelchair) and Patrick Gray at Monasterio de San Julian de Samos in Spain this summer. (PHOTO COURTESY I'LL PUSH YOU)

During that time, he also received several failed experimental treatments, as well as intravenous immunoglobulin (IVIG), which led to spinal meningitis—a potentially fatal inflammation of the fluid and membranes around the brain and spinal cord. Skeesuck left the hospital in a wheelchair, and he has needed one ever since. Ultimately, he was diagnosed with multifocal acquired motor axonal neuropathy, a rare immune-mediated condition—meaning the body's immune system attacks the nervous system—that affects muscle strength. He currently has minimal use of his hands, so he uses a power wheelchair and is dependent on others to bathe and feed him.

Throughout it all, Skeesuck's lifelong fascination with travel never ebbed. After a career in graphic design, he decided to help people with disabilities learn how to travel. He is the first person in a wheelchair to cross the treacherous terrain of the Pyrenees in 24 hours, a task that was previously deemed impossible. Accompanied by two friends, he is currently logging 15 to 20 miles a day on what he estimates to be a six-week journey. "I left home with none of my usual comforts—no spare wheelchair, no commode chair (a chair that allows patients with limited mobility to use the toilet with ease)—just me, my friends, and our off-road wheelchair," he says.

Early in his expedition a wheel broke, which led him on a search for an aluminum welder in Pamplona, Spain—a challenge he likens to finding a needle in a haystack. Prior travels have been far less physically demanding or resource-limited. One of his favorite trips was to a little town called Lucca in northwestern Tuscany, where he lived for two months with his wife and their three children, aged 5, 8, and 10.

Skeesuck recommends that those who have never traveled start locally. "Gather yourself a small budget and call to book an accessible room at a hotel in another part of your home town," he suggests. That way you can get out of your home environment without being too far away, and you can be secure in the fact that you can always go home.


Travel Tips for People with Neurologic Conditions

We asked our road warriors to share their hard-earned wisdom on how travelers with neurologic disabilities who want to venture out in the world can get started.

  1. Take a staycation. "It's a perfect safety net for first-timers," says Justin Skeesuck. A staycation will get you used to being outside of your comfort zone. If you live in a small town, go to a neighboring town. Local travel gives you an out: you can get back home quickly.
  2. Try a cruise. Another great option for more adventurous first-time travelers is to take a two- to three-day cruise, according to Skeesuck. Cruise ship lines generally go above and beyond the accessibility requirements; all ships have elevators, the staterooms have roll-in showers and tend to contain more space, and the decks are easy to navigate because they are mostly flat.
  3. Choose the right destination. Some cities are more accessible than others. Candy Harrington, the guru of accessible travel, has written several books on barrier-free travel to destinations like the Grand Canyon and B&B's throughout the US, as well as guides for road trips and for vacation seekers. Cities that have hosted the Olympics tend to host the Paralympics soon thereafter, and regulations dictate that those cities accommodate disabled travelers, according to Michael Glen. Cities with Paralympic competitions tend to have streets with wheelchair curb cuts and accessible hotels and restaurants, as well as accessible subways, buses and trains, he adds. Look into Barcelona, Sydney, Vancouver, or London.
  4. Try to select American chain hotels. Carole Zoom tends to use U.S. hotel chains because those lodgings follow the Americans with Disabilities Act (ADA) guidelines and offer wheelchair-accessible features.
  5. Go with a travel partner. Zoom travels with her husband, Patrick Carpenter, and her friend, Jared Molinsky, who have learned the fine art of when to help out and when to allow her to be independent. Skeesuck travels with his best friend, Patrick Gray.
  6. Consider using a travel agent who specializes in accessible travel. Skeesuck says that travel agents who specialize in accessible travel can customize your trip based on your interests, abilities, and energy level, and act as an advocate for you, answering queries about your safety and security. He recommends Able to Travel, Easy Access Travel, Sage Traveling, and Hammer Travel.
  7. Don't settle for verbal descriptions. Photos are far more reliable, says Zoom, who asks for detailed pictures of the room, bathroom, and entrance to every hotel she visits. She encourages others to be persistent: call and call back as much as is necessary to get answers in advance of your trip.
  8. Call your airline in advance. Air travel requires its own extensive research, especially as it applies to your device and equipment. Call in advance and ask detailed questions about boarding and landing procedures. The Air Carrier Access Act, not the ADA, covers regulations on nondiscrimination on the basis of disability in air travel.
  9. Post handling instructions on your wheelchair. Zoom once asked a bilingual hotel clerk to write instructions on how to disassemble and reassemble her wheelchair in both Mandarin and Cantonese, right next to the English. Most travelers encounter difficulties related to airline storage of their wheelchairs at one time or another, so it pays to be as explicit as possible. Attach instructions that detail how and where to disconnect the batteries, as well as any other preparations that might be necessary for transport.
  10. Carry a portable ramp. Zoom is always prepared for curbs and entrances that are not accessible. She uses a portable lightweight fiberglass travel ramp for doorway thresholds and vehicle entrances, similar to the ramps used in Japanese subways to bridge the gaps between train and platform.

 


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