For ALS Awareness Month, we asked members of the Les Turner ALS Foundation’s Support Services Committee to help us explore topics in ALS that people should know more about.
For the first week of May, we’re looking at a day in the life of someone who’s living with ALS. In this essay, Matt Creen talks about the challenges of traveling with ALS.
When I was first diagnosed with ALS, my wife and I were shocked, not knowing what lied ahead. In the subsequent 11 years we have been living with ALS, we have gotten into a rhythm of living with this disease. I am not saying it is easy, but with the right attitude, you can get back to enjoying life.
One of the most challenging things is traveling, especially traveling by airplane. I am determined to travel, so I got a friend of a friend to introduce me to the former New Orleans Saints player, and founder of Team Gleason, Steve Gleason. I sought Steve’s advice because he was the only pALS (Person with ALS) I knew of who traveled by plane, who was in the advanced condition as I was.
With Steve’s advice, we took our first flight when I was in a wheelchair on December 28, 2017 to Ft. Myers, where my brother-in-law has a home. Since Steve had a whole team around him, they carry him on and off the plane. So we decided to have my two adult sons carry me. They practiced carrying me at home for a few times in the weeks before the flight, which was a good idea, because they dropped me a couple of times, while laughing a lot. I was not injured and I laughed also.
Before the flight, I emailed the airline through the “contact us” section of their website, at least 30 days before the flight. We fly Southwest Airlines because of a few reasons, some of which will end this year. I explained my situation, and asked for specific accommodations. The flight was great. They greeted us at the bag check in, and when we checked in at the gate, they told us that we would board first, and then the ground crew checked in with my son to get the plan for loading my power wheelchair, after I was boarded at the plane door. They let us drive my wheelchair to the plane door, and took my wheelchair to the tarmac, to be loaded in the cargo hold.
We have only flown to Ft. Myers. I arrange a hospital bed, an IV pole, for my tube feedings, and a Hoyer lift to be delivered to the home before we arrive. We have traveled by vehicle to destinations where we stayed in a hotel. We bring a Hoyer lift with us, and I a wedge for me to use to keep my torso elevated in the hotel bed. It’s not a great situation, and the wedge is not as comfortable as a bed that raises. We have only done that for trips that lasts a couple of nights. When we fly, we try to make it at least 10 days. It usually takes me a day to recover from the flight. A few years ago, my sister in law was driving to their home in Ft. Myers, and she took the extra manual Hoyer lift we have with her. Also, after we unsuccessfully tried to improvise with different things, we finally ordered the same bath chair that we have at home to be delivered there. So, we are really thankful to my wife’s brother and his wife for giving us a place to escape winter, and store the equipment.
In subsequent trips, we asked the airline for lift assistance. At Midway Airport in Chicago, they provided four guys, usually some of the same guys. Even though they are supposed to lift me to the aisle chair, and then to my seat, since I always a full body sling under me, they have always carried me by the sling from my wheelchair to the seat. In Ft. Myers, they have always used the fire department for lift assistance.
Every time we have flown was a great experience, until January of 2022. I had emailed the airline 30 days before departure , per my usual practice, and they responded at least a week before, and as usual, they said they would alert the personal at Midway Airport, and they were looking forward to welcoming us. We did something we had never done before by flying on the first direct flight in the morning. There was also a snow storm that morning. We got to the gate in plenty of time before the departure time and learned that the departure time was delayed by around a half hour, presumably because of the snow. Things were progressing as normal, with my son discussing with the flight and gate crew what assistance we needed.
All of the sudden, a woman shows up and says that I am not flying. Laughingly, she was the designated complaint resolution officer, which I learned afterwards that the airlines are required to have someone designated for that role. In my correspondence with them after that, I pointed out that she was not the person who should have that role because there were no complaints until she got involved. I had stopped printing the emails I got from the corporate office who responded to my emails, because we had never a problem. Of course, that morning, the public WiFi was down, so I couldn’t pull up the email to show that they were supposed to accommodate me. She misconstrued something my wife told her about prior flights, and convinced the pilot to deny boarding. The pilot has the final word, so we didn’t make the trip.
In my correspondence with them after that, I asked them to guarantee that I would never be denied boarding in the future. They wouldn’t do that, because I guess that the pilot always have the final word. Of course, they refunded all of the fares, and gave us $1400 in flight credits for future flights. We have taken one trip since then, and there were some questions by the gate agents when we first arrived, but after I showed my correspondence, the four guys who lifted me in the past showed up. Interestingly, when we returned to Midway Airport, they had the fire department lift me.
We have taken a trip by airplane since 2023. This has been because of personal scheduling issues, not anything to do with the airline. I tried to arrange something for this spring, but we couldn’t find anyone who was available to fly with us both ways. We need assistance when we fly, in addition to the assistance from the airline. We are definitely going to Park City, Utah next spring. My best friend lives there, and my pulmonologist introduced us to doctors from the University of Utah, who run a skiing program for disabled people. They have experience with ALS patients on ventilators, so we are excited to do it. I can’t wait to get back on the slopes. It won’t be easy, but you have to put in the effort to live life to the fullest!
In addition to his personal experience, Matt Creen is also an advocate for accessible air travel. He submitted public comments on the U.S. Department of Transportation’s proposed accessibility rules and wrote to members of Congress in support of the Air Carrier Access Amendments Act. As Matt notes:
“It is very important that this year’s FAA reauthorization bill included the most comprehensive update to accessible air travel requirements in the past 40 years. Of course, the ultimate goal is to be able to remain in your wheelchair on a flight, like you are able to do on ground transportation, but this bill requires training for those who assist disabled travelers and those who store mobility devices. It also provides for ongoing study for the goal of allowing disabled travelers to remain in their wheelchairs. Overall, it is an important step forward for accessible air travel.”
