Vacationing With SMA as Your Travel Companion

My family and I have just returned home from a fun-filled, relaxing vacation in Orlando, Florida. We haven’t taken a vacation in over two years, and it was long overdue.

Vacations offer opportunities to explore a different part of the world and take a break from normal routines. But sometimes there are things you can’t take a break from.

SMA is one of those things. We can’t leave it with the house sitter or turn it off during the trip. Even on vacation, we have to set aside time for medications, rest, and thrice daily medical routines. There’s also the possibility that we’ll encounter inaccessible locations.

None of that means we don’t enjoy our trips, though. With a bit of creative planning, flexibility, and my mom’s expert strategizing, traveling with SMA can still be fun.

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Have List, Will Travel

Our planning starts with organized packing. My bags are always filled to the brim with typical vacation essentials and what feels like a somewhat ridiculous amount of medical supplies.

My bedroom looks almost bare by the time my luggage has been loaded into the van, and it feels like we’ve literally packed everything except the kitchen sink.

Medical equipment and luggage are carefully stacked like Tetris bricks in the van while traveling to Florida. (Courtesy of Halsey Blocher)

There’s a laundry list of items that can’t be forgotten, as they’re essential for my health, and unlike a toothbrush, not easily replaceable. To ensure that nothing important gets left behind, my home care nurse and I have developed a simple system that is tremendously helpful: a packing list.

This list is divided into four categories: personal items, medications, medical equipment, and miscellaneous.

I start working on the list at least a week before I intend to start packing, and I add to it whenever I remember something else. Then, I grab a highlighter and mark everything that can’t be packed until the morning we leave. This includes things like my hairbrush, machines I use to remove mucus from my lungs when I wake up, and my Evrysdi (risdiplam), which has to be kept cold.

Before leaving, we check and double-check the list. The list can also be used throughout the trip to ensure nothing is left at hotels.

Speaking of hotels, accessible destinations are another important part of traveling with SMA.

When preparing for a trip, an internet search will provide an array of options for hotels with accessible rooms, but just because a room is advertised as accessible doesn’t mean it will work for your individual needs.

Look for information about the hotel’s accessibility features on its website, and utilize the photos to decide if the rooms can adequately accommodate your needs.

My mom calls our hotel before we arrive to kindly provide staff with a better understanding of what we need in an accessible room. I suggest that you also contact your hotel in advance to confirm your request for an accessible room, and discuss any specific accommodations you require.

For destination ideas, check out this list of breathtaking accessible hotels that travel blogger Cory Lee recommends. Cory has SMA, and his blog, Curb Free With Cory Lee, is a great resource to help plan a spectacular vacation.

By now, you might be itching to go plan your next vacation, but before you do, we should talk about the elephant in the room.

We currently live in a world where the COVID-19 pandemic affects daily life and necessitates additional precautions while traveling. It may not be safe for everyone to resume traveling, so talk to your medical team about your personal risk level and appropriate safety measures for your trip.

My family wore masks indoors, and I took my pulmonologist’s recommendation to bring lightweight scarves to wear over my neck to protect my trach in crowds. We are also fully vaccinated against COVID-19.

For safety and to soak up the sun, we took advantage of Florida’s outdoor dining and entertainment options. We found that most places weren’t as busy as they would be during the summer months, so it was easier to keep our distance from people.

From left, Doug Dye, Halsey Blocher, Heather Dye, and Lucas Rosbrugh watch the rain after eating dinner outside at Disney’s Boardwalk. (Courtesy of Halsey Blocher)

We always try to minimize my exposure to harmful bacteria and viruses, so we normally travel with an abundance of hand sanitizers — even when we’re just running to the store.

For our trip, I also purchased disposable wipes to clean surfaces, and I packed a sanitizing UV light wand that I received in a support package from Cure SMA.

Our trip still had some unexpected challenges, but our planning, teamwork, ingenuity, positive outlooks, and years of experience helped make traveling with SMA as a companion a fun and memorable journey.

What tips and tricks do you have for traveling with SMA? Share your ideas in the comments below.

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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.