How to make car travel more comfortable for wheelchair users
Chinese philosopher Lao Tzu is noted as saying, “A journey of a thousand miles must begin with a single step.” For those of us with neuromuscular disease, we know that step may not literally be a physical movement, but rather a plan of action.
This past year I had the good fortune of going on a road trip with my parents for an extended stay in Florida. Before we left our Traverse City, Mich., home, we realized we had several factors to consider in order for our travels to be smooth and successful.
Since I have type 2 spinal muscular atrophy, our primary questions were:
How are we going to carry my equipment, including my wheelchair, bathroom commode and bedding, in addition to the standard necessities for a more-than-two-month trip?
How many miles could I travel in a day without becoming unbearably uncomfortable?
What could I do on the trip to occupy my mind and help make the time pass quickly?
These concerns, it turns out, are ones that many travelers with muscle disease consider. I learned that through practice and experience, it’s possible to determine the best approach to meet individualized needs.
Explore products for comfort and safety
In the days preceding our journey, we decided we would use our GMC Envoy to tow a Haulmark trailer carrying our load. I am petite enough to fit in an infant seat padded with towels, pillows and an egg crate cushion.
We purchased a Kurgo Auto Tray Table (www.kurgo.com/products/att.html) that hooked around the front passenger seat and provided me with a table in the backseat. It worked well because I had just enough ability to move my arms and operate a mini notebook computer while I was riding.
As we progressed on our trip, I gradually determined that 400 miles, with periodic breaks, was a feasible goal for me to cover per day.
Mark Casto, a physical therapist for the Sentara Leigh Therapy Center in Norfolk, Va., recommends people with MD start with short trips, determine their tolerance and add miles as they can tolerate. He suggests, “A two-hour trip with one break would be a good starting point.”
Pressure relief and prevention of deep vein thrombosis (DVT) are the main concerns with prolonged sitting bouts, Casto warns.
Movement every 15 minutes can help prevent these kinds of issues. Wheelchairs with the tilt feature and adjustable footplates can be useful. Casto says T.E.D. hose, available with a doctor’s prescription, can prevent DVTs or blood clots from forming. These stockings keep pressure on the legs and stop blood from settling.
Neck collars are support devices that may be beneficial for those taking road trips with facioscapulohumeral muscular dystrophy (FSHD) and other forms of neuromuscular disease that cause neck and shoulder weakness, Casto says.
Keep wheelchair in place
A secure means of transporting a wheelchair is, of course, fundamental.
The wheelchair must be secured with straps or device(s) to prevent it from moving, and riders should use proper seat belt systems.
|The family's travel rig -- a McEnvoy and Haulmark trailer -- all packed up and ready to hit the road.|
We transported my chair in the trailer, which my parents bought for about $2,000. Here was our logic: To make our trip, it would cost $350 to rent a trailer one way. The more trips we take, the closer we get to the total purchase price. By purchasing it, we have our own equipment and something we can sell when we decide we’re finished traveling. It wasn’t necessary to buy a ramp/lift because the trailer’s back door lowers and makes a ramp.
Guidelines about legal standards for transporting wheelchairs can be found by reviewing online resources. The Ride Safe Web site, developed and supported in part by the University of Michigan Health System, offers pointers to ensure safety, including:
• Always position the wheelchair and rider facing forward in the vehicle.
• Do not attach tiedowns to adjustable, moving or removable parts of the wheelchair such as armrests, footrests and wheels.
Go to www.travelsafer.org for comprehensive information or call (734) 764-2171 to request a brochure. The National Highway Traffic Safety Administration also maintains an index of links that lead to consumer information, reports and notes pertaining to “Automotive Safety Issues for Persons with Disabilities.” It’s at www.nhtsa.gov/cars/rules/adaptive/index.html.
To my surprise and delight, our trip went much more smoothly than I expected. I don’t think we intend to make any big changes next year because it went so well. Our main hope is that we all can do it again for several years to come. It takes quite a bit of effort for my parents, and the three of us aren’t getting any younger.
Diana Humphrey, 47, of St. Louis, Mo., understands the importance of proper wheelchair transportation. She has SMA2 and for three decades has traveled the United States extensively in a large van capable of pulling a full-size trailer. With her family, she visited places such as the Florida Keys, the White House, Maine’s Pemaquid Point Lighthouse, the Mall of America, the Grand Canyon and even Al Capone’s prison cell on Alcatraz Island.
“We started out with short trips to nearby areas and expanded outward as our capabilities and adaptability grew,” says Humphrey. “We researched, we planned, we packed, we packed some more, we made lots of notes and checklists, we forgot things, we had flat tires, and … we traveled!”
She emphasizes that her family’s ability to problem-solve and to adapt made their adventures on the roads enjoyable. When Humphrey’s SMA progressed to an extent where she could no longer take pictures, for example, she turned to collecting postcards of the destinations they visited.
In November 2004, Humphrey and her family were on their way to see the Branson, Mo., holiday light displays, when they were involved in a rollover accident. Their camper and everything in it was demolished. Their van was totaled. Humphrey’s wheelchair was damaged beyond repair. She spent six weeks in the hospital recovering from broken bones and pneumonia, which ultimately caused lasting significant weakness and loss of mobility.
That serious incident and increasing discomfort covering the miles led Humphrey to put an end to her traveling days. Still, she enthuses: “I have seen so much and will never forget that awesome chapter in my life. Besides, I always kept travel logs of our trips and have typed them all up into one book to consult whenever I need a lift to a dull day or want to share our fun times with others.”
Go with friends
Kevin Mulholland, 22, of Chesapeake, Va., meanwhile, intends to keep on hitting the road. He is a power soccer player with Duchenne muscular dystrophy (DMD) who estimates he has taken hundreds of road trips in his lifetime. Lately, if he isn’t on his way to a game, he is likely headed to visit his brother or sister attending college.
As a passenger during long car trips, Mulholland likes to watch movies, listen to music, chat, eat snacks, solve crossword puzzles and nap. Last Christmas, Mulholland traveled with his family to his grandparents’ house in Massachusetts. Trips at holiday time generally require a bit of extra patience, he says. “Despite the traffic and snow, we still made it.”
His suggestions for fellow travelers: “Take a reliable vehicle on your trip. Know where you’re going. Arrange hotel check-ins (checking carefully on accessibility) and bring people who can help you.” Above all else, Mulholland concludes, “Have fun and get out there.”
Ryan Berube, 28, of North Ogden, Utah, is another person with DMD accustomed to taking road trips. He travels in his van with dropped floor and push-button ramp. His advice: “Take the trip in a vehicle where you can stay in your chair. If you don’t have one, rent one if possible.”
Mark Griffin, 34, of Norfolk, Va., has Becker muscular dystrophy (BMD) and still has mobility without using a wheelchair. Nevertheless, he must think about details such as the terrain’s degree of incline and proximity of parking because he has difficulty walking.
Historic sites, he explains, can be particularly tricky. With the help of someone who can drop him close to his destination, however, Griffin has even been able to see the Statue of Liberty.
Traveling with her husband, Henry, is what enables Patricia Banks, 62, of Wasilla, Alaska, to keep enjoying road trips as her amyotrophic lateral sclerosis (ALS) progresses. On occasions where they have covered long distances such as going to Texas, the couple didn’t always know where they would be stopping each night.
At hotels, Henry would go in to the front desk and ask to see the “wheelchair accessible room” before unloading her from the vehicle.
While baggage and room accessibility can be an issue during road trips, Banks reasons, “Travel by car is much easier and more comfortable for me than a plane trip. When we fly, I don’t take my power chair because we’re afraid it will be damaged.”
Roland Winters, Jr., 62, of Surprise, Ariz., understands the appeal of traveling by road. He is the current treasurer of the Handicapped Travel Club (www.handicappedtravelclub.com), an international organization with approximately 200 members that sponsors rallies across the United States.
Winters has BMD. To reach club events, he uses a full-size Ford conversion van with a TV, stereo, electric foldout side power lift, six-way power transfer seat and hand controls. Many in the club, he said, have accessible RVs.
“Fun and fellowship” is the group’s motto.
“I encourage anyone, with or without a disability, to travel through this great country as often as they can,” Winters says. “As we say in our club, we have a GOAL — Get Out And Live.”
|Freelance writer Bethany Broadwell is always ready now to hit the road.