Name almost any scenic part of America with decent roads, and chances are good it’s been visited by someone with ALS in a motor home (RV).
Far from being a barrier, having ALS — at least in the case of these three families — has been the motivation to hit the road in a big self-contained motorized rig and see the country.
The Melott family of Ranchos Palos Verdes, Calif., has always loved the outdoors, and that didn’t change when Jackie learned in August 2006 that she had ALS. Today the family (husband Tim, children ages 20, 16 and 13, and the family dog) are out in their RV nearly a month of every year. They usually take along a caregiver.
Works as an antidepressant
Jackie, 51, has severe mobility impairments, uses a power wheelchair and is vented full time via a tracheostomy. At home she sometimes gets depressed. Tim says he knows then that it’s time to fire up their 34-foot diesel-powered RV and head for the country. “She visibly perks up, almost as soon as we’re out of the driveway,” he says.
Tim modified their motor home by replacing a window behind the passenger’s seat with a 36-inch-wide doorway. To get Jackie and her wheelchair up and inside, they use a Superarm motorized lift with 600-pound capacity.
Their RV sometimes tows a trailer with four ATVs (all-terrain recreational vehicles). Other times they tow a rented accessible van for transporting Jackie when the RV is parked. They often link up with friends who meet them in the boondocks and stay in their own RVs or simply pitch tents around a campfire. The Melotts prefer to “dry camp” away from organized RV parks and campgrounds so they can run their ATVs. Their motor home travels have taken them throughout California.
Betty Surtees, 73, received an ALS diagnosis in November 2006. Her assistive equipment includes a bilevel positive-airway-pressure respirator (BiPAP), cough assist, suction machine and feeding tube. “I have a machine that can talk for me, but so far I prefer to use the dry-erase board for communication,” she says via e-mail.
Surtees, who has bulbar-onset ALS, is ambulatory if she’s careful (last year she fell and broke her hip), so their 36-foot motor home hasn’t had to be modified yet — except, she notes, “one drawer is lost to clothes as it now contains all the tube feeding supplies.”
Whereas the Melotts pretty much confine their travels to California because Tim still works full time, Betty and her husband Bob, are veritable globe-trotters. They both retired in 1987, she as a rehab nurse.
In May 2007, the Surtees set out for Maine by way of San Antonio, Tucson, Seattle (to put the cats in a kennel) and an Alaskan cruise, she says. After the cruise they picked up the cats and enjoyed the San Juan Islands for a few days, then visited Yellowstone National Park. From there they traveled to a family reunion at Niagara Falls and then toured the Adirondacks before finally visiting the grandchildren at their home in Maine. They arrived home in Cummings, Ga., four months later.
The Surtees prefer to stay in RV parks. “The trick is to get there in early afternoon so there is space available,” Betty notes. “We prefer to use our own facilities, even our own laundry machine — much easier and private. But we always check ‘Trailer Life’ for ratings of the facilities, for cleanliness, as it usually is a clue as to the neatness of the park itself.”
Their trips often include their three granddaughters and Boomer the cat (his buddy Henry the cat died last year). They also tow a small sport utility vehicle for side trips, and put nearly as many miles on it as they do on the RV.
The Surtees sold their “port” or stationary home three years ago. If they feel the need to give the motor home a break, they rent lodging in their old neighborhood.
A lifelong wish fulfilled
Steve and Sandy Ennis of Tullahoma, Tenn., often take their two granddaughters on motor home sojourns these days, although their trips are seldom lengthy because Steve, 67, still works full time as president of Coca-Cola Bottling Works of Tullahoma. They’ve taken two trips to Florida on the Gulf of Mexico and also visited Dollywood. “Steve was in a wheelchair, so he got to hold all of our junk!” Sandy says.
|Steve Ennis’ travel gear includes a beach wheelchair.
Steve has a tracheostomy and uses a ventilator, feeding tube, assistive speech communication devices at home and work, and computers for e-mail at several locations.
Shortly after his diagnosis in summer 2005 and before he needed assistive technology, Steve and Sandy spent five weeks in their RV doing something he’d always wanted to do: traveling the Lewis and Clark Trail from St. Louis to the Pacific Ocean and back. Along the way they visited Glacier National Park, jet-boated the Snake River, heard the Mormon Tabernacle Choir and drove through a tunnel in the base of a giant redwood.
In those days they pulled a full-sized SUV behind their 43-foot RV, but Sandy says that now they usually tow a trailer carrying Steve’s adapted van.
The only modification they’ve made to the motor home is adding a lift that can hoist Steve up to and through the front door. Until he got his trach in 2008, Steve drove, but now pilots only his wheelchair. “But he makes a GREAT backseat driver!” Sandy chuckles.
They’ve also made some personnel changes. “When we travel now, we get someone to help us drive. Also, we might get a nurse to go with us now,” Sandy says.
She counted among the rewards of traveling by motor home being able to take family and friends along, as well as having their own food on board so they don’t have to stop at restaurants.
Challenges remain the same
“The problems with traveling with an RV and a person with ALS are the problems you have wherever you are,” Sandy Ennis says. “You have to take a lot of stuff to care for him, but we have plenty of room in our RV.”
For the Melotts, restaurants are not such an issue. Tim says, “Some people with ALS don’t want to go out in public, but we think it’s important to do that. Ninety percent of the people you encounter are gracious, helpful. Sometimes we have to suction Jackie in public. It’s a fact of our lives and doing so helps us make family life as normal as possible.”
One downside of RV travel is the cost of modifications, he says, calculating that the price of creating the new doorway on his RV was about $7,500, and the cost of the Superarm lift was close to $6,000.
Tim recommends talking to a tax expert about modifications because they may be tax deductible. Further, he says, the cost of replacing an inaccessible RV with an accessible one could be a tax write-off of up 50 percent. He speaks from experience, as their current big rig is the second one they’ve owned.
Renting an accessible van runs the Melotts about $500 a week. “Yes, it costs a lot of money,” says Tim, an architect and project manager for a large engineering and construction firm. “But you refocus your priorities in life.” His advice to others who may be considering the motor home mode: “Look to see what you enjoy in life, then figure out a way to do it. We enjoyed camping, and we still do.”
The Melotts lived for years in the Philippines, China, Australia and Europe, but they still prefer camping, RV-style, here.
For Betty Surtees, the rewards of motor home travel include “good people along the way, interesting sights to see, beautiful scenery to enjoy and a definite change of pace.”
What will end their RV travels? “Age, not ALS,” she predicts. “We’re getting to that time when it’s advisable to put up the keys to the RV or at least take shorter trips closer to home.”