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Learning to Fly: Traveling with ALS
Eric Lowen sings, swims and skis with Lou Gehrig's Disease.
By James Klein, Editor
Musician Eric Lowen was diagnosed with ALS in 2004. Since then, he has lost much of the use of his body, relying on a motorized wheelchair and other assistive devices, as well as friends and family, to help manage his busy personal and professional life.
Despite physical challenges, the professional singer, songwriter and guitar player continues to travel and tour, play and record music, and even go on ski vacations with his wife, Kim Ferguson, and their five children, Sam Lowen, Annie-Claire Lowen, Thomas Ferguson, Katelyn Ferguson, and Hailey Ferguson.
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“It's a progressive disease so you learn a little at a time, and I've been going on tours steadily,” explains Lowen. “I travel once a month, so I've learned a lot about traveling with ALS. For example, to get to the airport, Super Shuttle provides disabled transport and they don't charge you any more than you would get charged otherwise. You can take a person with you, and usually they send a contracted cab. I live in Valencia, and it costs me $56 to get to LAX with another person. And they pick you up when you come home and the whole deal. I arrange for it online. You just have to make sure you check the ‘Do you need special assistance?’ box.”
Lowen advises, however, that PALS be prepared to pay extra for renting equipment and obtaining assistance while traveling. For those able to handle the additional expenses, he insists it is not difficult to arrange even complicated travel plans. Indeed, his itinerary for a recent trip to perform on the East coast would exhaust anyone.
“I played in a folk festival in upstate New York,” says Lowen. “So we flew to Newark, New Jersey and then went up to the folk festival in upstate New York. And then we went to Quebec and we spent four or five days in Quebec. Then we went to Vermont. Then we went to New York City. So, it was a pretty extensive trip and a very expensive trip.”
“The folk concert was in the Berkshires. We stayed there for a couple of days. I went swimming in a lake. I carry something with me called Love Handles. Three or four people can carry you easily. Two really strong people can carry you, and they're waterproof and everything. So I went in a hot tub and went swimming.”
The key to traveling with ALS, Lowen asserts, is to start planning your trip as far in advance as possible, and to seek help from The ALS Association’s chapters.
“I started almost a month before I left,” he recalls. “I contacted ALS Association chapters, and in the case of Quebec, it was the ALS Society in Quebec. They're all very willing to help in any way they can. They referred me to caregiver companies in each city I was going to…The ALS Associations either gave me a Hoyer lift and a shower chair or arranged one for rental to be delivered to the hotel.
“I called the hotels and made sure that the handicapped equipment was right. Having space under the bed, for example. Sometimes I take bed risers, which they sell at Bed, Bath, and Beyond for 20 bucks, to give enough room for the Hoyer lift to fit under the bed. And making sure the commode chair is one that will fit over the toilet.
“You want to get a handicapped room that has enough room to get into the bathroom. Preferably with a roll-in shower, but I didn't shower that much. You can't have everything. There was a bit more sponge-bathing.
“I prepared as much of that stuff as I could beforehand. Got the hotels. Got the van. I told them what I needed in the van, and they had it all set. We figured out mileage, so we had enough mileage available on the van. They delivered the van to the airport. Initially I got a ride to the airport, somebody drove me in my handicapped van and brought it home, which worked out really well.
“I take a transfer board with me. I take some other things for my own comfort, and I always ask for extra pillows at the hotel to prop myself up. I took the charger for my wheelchair. Then I took my clothes, and I took gloves for the caregivers and wipes and stuff like that. A cervical collar is really handy when you're traveling to keep you from bouncing around too much.
“So we set off for the airport. We got there in plenty of time. I had arranged previously with the airlines and made sure they knew I was coming with a power wheelchair and I needed help out of the wheelchair and into an aisle chair and out of the aisle chair and into the seat. And then I needed to sit in the front bulkhead on the aisle, and have somebody sitting with me. I arranged for all those things in advance…Southwest Airlines does the best job in my experience.
“We got to the airport. We used the Red Cap at the curb, and then we had the passes all printed out and everything. You sail right through security because they let you all go, everybody goes with the handicapped person. The handicapped person gets taken in separately and hand-checked, but they let the other people cut in line. So everybody meets you on the other side.
“You go to the gate, check in, and get your special things for pre-boarding. Find out how many people they'll let you pre-board with. Make it sound like you need a lot of help, and of course I do. And I use my gel pad from my wheelchair to sit on the plane so that I'm somewhat comfortable.
“You know, there were challenges. Things came up. The elevator was broken to get down to the baggage claim at Newark Airport, and I thought I was going to be living in the airport for a while. But they finally figured it out, and my wheelchair was waiting for me at the gate. I gave them instructions on how to fold the back down on the wheelchair so it wouldn't get broken and so they'd be able to fit it in. Then we picked up our baggage and walked across to where the van was, and there was a text message on my phone when I got to the airport, and they told me what spot the van was in, in the parking garage.
“We went over, we loaded the van, and we were off. It was really pretty exciting. And then I had a person, a caregiver come every day from nine to 12, while my family did other things. I had them bring me a cup of coffee and a muffin or something, and I did my exercises and I went to the bathroom and maybe had a little sponge bath.
“You know, the Hoyer lift and the shower chair were waiting in the hotel room for me, because I had reconfirmed with the hotel several times, and everything worked out perfectly. And it was just great in every city. Things worked out very well.”
Lowen’s family ski vacation last year was made possible through companies that specialize in providing ski equipment and instruction for people with handicaps. “I went to Mammoth. There are several places where the skiing was a little difficult because the caregivers I arranged for didn't show up -- it’s a little different in ski communities and smaller towns,” says Lowen. “For the skiing, I used Disabled Sports Eastern Sierra, at Mammoth. They were really accommodating. It was $65 for four hours of skiing, and it was really fun.
“I showed up at the appointed time, all the kids went with me, and they put me in this little, they call it an egg, and it's got skis on the front and on the back, a place for your bottom and a place for your feet. And it's got a handle on the back, sort of like a dog sled. And they strap you in there, and they bundled me up and we were off. We went to the lift, they lifted me up on the lift. I went with two guys, and we got up to the top of the bunny slope and we went down. They showed me how all I had to do was turn my head to steer the thing, but of course, one was tethered to it and was holding on to the back. Gradually they let go more and more. They're not allowed to let go completely, but he said, ‘You're doing the steering,’ and I went side-to-side down the mountain. That was big fun. We went up again and we did it again. The other guy, who was a special forces guy from the ski patrol in the Army said, ‘I'd like to take you down and show you a different side of things. I'm going to take you down really fast.’ So we rocketed down this hill. It was just incredible, so exhilarating. We got to the bottom and they said, ‘Now we're going to go on a different lift. This next lift is ten times as long as the one you just went on’!
“So we went up and it was just incredible. It was April, but it was 14 degrees at the top and the wind was like 60 miles an hour. We got off the lift and we actually got blown back towards it again. But we started down and I was with the gentle guy first, halfway down. Then the other guy said, ‘Can I take over?’ And we rocketed down the second half. It was insane, but it was exhilarating. Oh, and my kids were skiing all around me during the whole way down. It was just great to be able to ski with my kids, my family.
Lowen’s recommendations for other PALS wanting to travel? “I would say one very important thing is don't be afraid to ask for help. And make sure that you're well prepared…a disabled person I met on a plane once gave me a very good piece of advice. They said to approach the hotel that you need and just tell them, ‘This is what I need’ and let them work it out. Be aware of the fact that most of the people in the hotel have never even been in the disabled rooms. They don't know the difference between having one bar on a wall in the bathroom and actually having a roll-in shower. Sometimes they call them a ‘barrier-free’ shower. So the whole thing is to actually get somebody to visit the room and make sure you get the right room.
“Oh, and one more thing,” Lowen adds. “Choose your family very carefully. If everybody's in the frame of mind to have fun, it works. The guys I travel with for my band, they don't like to travel without me because they have to wait in security lines and they have to wait to get on the plane and choose their seat and everything like that. When I go with them, we breeze right through.”
For twenty years, Eric Lowen and Dan Navarro have written, recorded and toured for a growing national audience, producing nine CDs including their highly-awaited new album, "Learning To Fall", available now through their website, http://www.lownav.com/. |
The ALS Association Greater Los Angeles Chapter
