With SMA, there’s important prep work to do before I can hit the open road

Travel has always felt like freedom to me. Some of my favorite memories were made on long road trips with friends, crisscrossing the country in my van — from Maine to Florida, the Carolinas to California, Texas to Washington, and through about a dozen national parks along the way.

I live with SMA, and that reality carries a whole van load of travel logistics that only get more challenging as I get older.

I will admit that the easier and more comfortable choice would be to stay home in my safe and predictable space. As Frodo Baggins reminds his friend, Samwise, of the words of his cousin Bilbo in “The Lord of the Rings:” “It’s a dangerous business, Frodo, going out your door. You step onto the road, and if you don’t keep your feet, there’s no knowing where you might be swept off to.” Still, I can’t imagine giving up beauty, adventure, and the chance to keep living fully just for the sake of safety. That tension between comfort and possibility shapes every trip I take.

This summer, I had an opportunity to go to Nashville, which is about a seven-hour drive from home. Not “The Odyssey” by any means, but still an endeavor to plan and prepare for. I like to imagine I am a low-maintenance traveler, and I do what I can to pack light and simplify, but there are some things that cannot be avoided.

Recommended Reading

June 15, 2026 News by Lila Levinson, PhD

SMA specialists face high rates of burnout, leading to delayed care

Ensuring accessible accommodations

I love the idea of staying in an Airbnb, and I have done that a few times, but there are so many variables that are hard to control and know ahead of time, so I usually opt for a hotel.

For my Nashville trip, I called the hotel to make a reservation months in advance because I’ve learned that one cannot assume online bookings are accurate or sufficient. I specifically need a mobility-accessible room with two beds. This means wider doorways, space for turning around in my chair, space to park beside the bed, and adequate space to navigate the restroom. Some hotel restrooms are more accessible than others, but by calling I can make sure it is set up according to my personal needs.

Choosing a travel buddy

When I travel, I reserve a caregiver friend (or two, if possible) early on in the process, narrowing it down to someone who knows my care routines and would most enjoy that particular experience with me — after all, it will be their vacation, too.

Since my vacation depends on their participation, I also consider who would be least likely to have to cancel. Then I find out who is available on the days the trip will happen, meaning who can take time off work, who can get someone to cover their church/community commitments, and who can find someone to watch their kids and pets while we’re gone. The person who can get that all sorted out first is my official travel buddy!

Packing smart

Summer packing is so much fun because a swimsuit, shorts, T-shirts, and sandals hardly take up any space in a bag! But I also need to take my wheelchair battery charger, portable lift system and sling, special hygiene kit, extra pillows, and medicine.

I make the list and check it twice — every day, for a week! The day before we leave, my living room is piled with all the essentials and a few additional just-in-case items, too. It’s good to be prepared, but not to overdo it. On the day we leave, my wheelchair and I get secured in my van first, and my friend packs all our bags around me. Then we set up our GPS, pick some great tunes, don our aviator shades, and hit the road!

For me, that thrilling moment is more than the start of a vacation; it is a reminder that while travel with SMA may require extra intention and preparation, the freedom, beauty, and joy of the journey are still worth every bit of the effort.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.