I'd like to share the realities of traveling with Spinal Muscular Atrophy (SMA) and how I overcome them. I love traveling and have taken trips pretty much around the world. While traveling with SMA can be difficult, nothing is impossible. After all, where there's a wheel, there's a way!
I'm going to share four realities I face when traveling and how I overcome them. These tips can be used on any trip (domestic or international), and altered to work with any form of transportation, destination, and trip length.
1. Air travel can be tricky when it comes to using the bathroom
I can't easily use the restroom on a flight, which means I plan out my meals and food intake days before flying. This makes it more feasible to fly each leg of my trip without using the on-board bathroom. While limiting my food intake during a travel day and having to go hours without eating isn't fun, I love travel more than anything else, so for me, it's worth it. I find that planning ahead of time makes the trip easier and makes my travels more enjoyable overall.
In addition to adjusting my eating schedule, I am also sure to use the bathroom after I get through security and before boarding my flight. Most airports have great family restrooms, which are quite spacious and accessible.
Once I get to my destination, my first stop is finding a bathroom. Depending on where I'm headed, my flights can last for hours, so a bathroom is essential upon landing. I can usually find a family restroom on my way to baggage claim. I personally like to take my time and work a bathroom break and a stack stop into my schedule before getting my luggage. I makes waiting a bit easier, and I'm fresh & ready to embrace my destination as soon as I leave the airport.
I almost always pack and travel with snacks. While I typically don't each much on the plane, it's a lot easier to take a break while waiting for my luggage and have a snack instead of waiting until I get to the hotel. This is especially necessary since my eating schedule is altered in order to avoid the on-board bathroom. Knowing I have a snack I enjoy is always preferred over trying to find something quick at the airport. It makes having to wait while on the flight a little easier since I know I can eat once we're on the ground without any further waiting.
2. Cold temperatures make it very difficult to drive my wheelchair
Due to SMA, I have very weak muscles and when I get too cold, it becomes incredibly difficult for me to even drive my wheelchair. I physically can't move the joystick with my fingers if I'm too cold. The easiest tip to overcome this reality is to only travel to warmer destinations. I don't always do this, as I've been to some great cold and snowy destinations, but booking a warmer trip makes it a little easier to stay warm, especially in the colder months.
When I do travel to colder destinations, I make sure to pack extra layers, hand warmers, and functional gloves or mittens to keep my hands warm. I plan indoor our warmer activities while I'm there so I'm not outside for too long, and there are usually plenty of things to do inside that still let me enjoy the outdoors.
I like to book a driving tour in really cold and snowy places. This allows me to do sightseeing and visit all the best places without having to spend the whole day outside. I book wheelchair accessible services for the best ride and view from the warm car. These tours also stop at the tourist destinations or can be customized to my preferences, which gives me a break from the cold weather and makes for a memorable trip without missing anything fun.
3. Traveling with SMA requires more planning
As someone with SMA, I can't book a spur-of-the-moment trip and head out the door without some planning beforehand. It can be a pain to have to spend more time planning my trips, but it's always worth it in the end.
Planning ahead allows me to take my limitations and preferences into consideration. I know it isn't always fun negotiating trip details, but knowing that all the planning will hopefully make the trip run smoother and be more enjoyable is well worth the hassle and stress that planning, calling ahead, and booking reservations can bring. I'd rather experience the stress and complications at home before the trip instead of during my vacation.
I like to look up my transportation options before I leave so I know if I need to have an accessible taxi service number in my phone, which public transportation options are available, and how far my destinations are from the hotel, dining, and anywhere else I want to visit. It also saves a ton of time looking up the restaurants ahead of time so I know where I may need a reservation and if I should call ahead in terms of accessibility and hours of operations. Plus, it helps knowing which dishes I'm most excited about and want to enjoy before my trip ends.
4. For most trips I have to request or rent equipment
Lastly, I will either have to request equipment from the hotel or rent equipment and have it delivered to my hotel room. I use a Hoyer lift sometimes, so in addition to requesting an accessible room with a spacious layout and bathroom features, I'll either need to borrow a lift or rent one from a third party. This extra step makes my trips so much smoother and easier, so it's worth the time it takes to set things up. When requesting equipment, it helps to be as specific as possible about your needs so they can accommodate you if possible. Needing to rent equipment can also make international travel more difficult, but it is totally possible! Don't be afraid to call ahead, email, and ask questions.
Traveling with SMA is possible and you shouldn't be intimidated to plan a trip. With some planning and preparation, you can easily navigate travel and enjoy your trip. With a little research, I've had a blast in so many places, both driving and flying domestically and internationally. In my experience: have wheels, will travel.
About the Author
After being diagnosed with Spinal Muscular Atrophy at the age of two, Cory Lee's thirst for adventure never ceased. He went on many trips around the U.S. when he was younger, and then started taking things internationally when he turned 15. Since then, Cory has traveled to 21 countries across six continents, all while managing to start up his travel blog Curb Free with Cory Lee, where he shares his accessible, and sometimes not-so-accessible travel adventures with others. Cory is a member of the Society of American Travel Writers (SATW) and the North American Travel Journalists Association (NATJA). He has been featured in the Los Angeles Times, USA Today, in a nationwide segment for CBS News, Lonely Planet, and many others. His blog won the 2017 Best Travel Blog Gold Lowell Thomas Award. He hopes to inspire other wheelchair users to roll out of their comfort zone and see all of the beauty that the world has to offer.
Cory Lee's ride is a Quickie QM-710.
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