Traveling over any holiday weekend is never easy – there are long lines to contend with at the airport, and traffic jams coming and going from most major cities. Add safety the necessary safety precautions around the COVID-19 pandemic to the mix, and there’s just as much or more planning to be done for getting to your destination.
This is especially true for people living with a disability-causing disease like amyotrophic lateral sclerosis (ALS). As every individual case of ALS is unique, every person living with ALS’ experience with travel will be different – everyone will need to determine what accommodations and precautions they need in order to get to their destination safely and comfortably.
Since she was diagnosed with ALS in 2014, Andrea Lytle Peet has done a remarkable amount of traveling. Recently, she became the first person with ALS to participate in a marathon in all 50 states. In 2021, while she was still in the process of accomplishing this feat, she was kind enough to share some of her considerable experience with us – as well as her best advice for others looking to safely and comfortably travel while living with ALS.
What kind of travels have you been on since your ALS diagnosis?
I am trying to become the first person with ALS to do a marathon in all 50 states, so I fly a lot (with my recumbent trike – aka my "mobility device" which flies for free). During COVID times, I've done a lot of road trips to race – even driving to Idaho last year. I'm very lucky to still be able to drive, so I share the driving with my husband.
What kinds of transportation have you used? Any problems/benefits related to different modes of travel like planes/cars/trains etc.?
Only planes & cars. I used to LOVE public transit before ALS, but driving & flying are just easier now.
What kind of trips have you enjoyed? What kinds have been problematic?
Our best trip of all time was to South Africa where we went on safari. It is cliché to say, but that trip was truly life changing. It was like seeing evolution and the circle of life all up close. For that trip, we used a travel agent for the first time – it felt right to enlist a professional who knew more about accessibility at the different places we would be going. I could climb the three stairs to get into the safari jeep and then just sit and watch the animals.
Any advice for other people with ALS who are interested in traveling?
For me, traveling is one of the great joys in life. Exploring new places, different cultures, and just breaking out of the daily routine all brings me a new perspective. Travel is harder with ALS, but is more meaningful now – I find that it refreshes my faith in the kindness of people, helps me to appreciate the struggles that others have, even gives me confidence that I can problem solve (or at least I feel really good about getting home!). I often ask myself: 'if not now, when?'
Tips:
- If you plan to travel a lot, get TSA precheck for you & your traveling companion. It costs $85 for five years. No need to remove your shoes, liquids, or laptops (sometimes you get a pat down if you can't walk through the scanner).
- Even if you just have early mobility challenges (e.g. cane or walker), go for it and get wheelchair assistance. Not only is it easier, you get to skip the lines at TSA and get to board first. And they'll help you all the way to your rental car at your destination. It's just a lot less stressful. I try to tip $2-3, but not necessary.
- I LOVE my walker for many reasons (light, easy to fold, easy to navigate tight spaces), but it is perfect on planes because it collapses to fit down the aisle and stows in the overhead bin. Not for everyone if you're able to walk just a little way, this will help you avoid the aisle chair. Costs about $100.
- I prefer to take my GoGo Traveler Elite 3-wheel scooter (which I got from an ALS loan closet) rather than my wheelchair when traveling. It costs so much less to replace if it were damaged ($1000 v. $20,000+) and it's easy to take apart to travel in any kind of vehicle. This is only an option because my hands still work.
- Make sure you know what kind of battery your wheelchair/scooter has (the airlines always ask) and verify that it is safe to fly. Know the weight too.
- Occasionally I rent scooters at my destination rather than traveling with mine. Usually the company will deliver it and pick it up from my hotel.
- In hotels or Airbnb, I try to avoid tubs, but usually bring my own suction grab bar with me.
- Look for hotels attached to the airport for early morning flights (or hotels with airport shuttles). That way you can return the rental car the night before and not have to deal with it when trying to leave.
Bring your handicapped tag – better yet, get two so you can leave one in your vehicle at the airport and have one to travel with.
- Pack your patience -- plan your trip as well as you can, but know that unexpected/situations WILL arise. Try to go with the flow!
To learn more about Andrea Lytle Peet and her mission to participate in a marathon in all 50 states, visit teamdrea.org. For additional information about traveling with a disability, see recommendations from the US Department of Transportation and the Center for Disease Control.
To learn more about the ALS Therapy Development Institute (ALS TDI) and our research to end ALS, click here.
Please note that this article does not contain information regarding any specific travel precautions and restrictions related to COVID-19. For information see the CDC’s latest travel guidelines.
