LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing their experiences with LEMS.
Bustling airports and busy highways are hallmarks of the holiday season. But when you have LEMS, travel can be intimidating. We asked Ambassador Jamie to share her best tips and tricks for making your next adventure an easy and enjoyable one.
Before You Go
“When you have LEMS, travel involves a lot of preparation. Many of my tips have come through trial and error. Here’s how I try to ensure I have the best trip possible.”
- Start Planning Early. I generally travel mainly in the United States, and I take my husband with me as a travel partner, but it’s still true that advance planning is a huge part of travel.
- Pack Light. I’ve found that having travel-sized items that I keep in my bag year-round is super useful. This prevents me from needing to take heavy, full-sized bottles with me, and since they’re already in my bag, I don’t have to remember to pack them, either.
- Consider your Mobility Aids: If you’re traveling with a power chair, call the airline customer service line and ask how your scooter will be transported. Many people have a special case made for their smaller chairs, like the ones made for musical instruments, and if you travel frequently that might be a good long-term investment. Walkers or less heavy power chairs are usually easy for the airline to accommodate.
- Take Precautions: I always plan for an extra two to three days in case there’s a delay or cancellation. This is particularly important when traveling during the holiday season. It’s even true if you’re driving or taking a train to your destination since the weather and other delays are still possible.
- Take Photos: I’ve never run out of prescriptions while traveling, but I know many people who have had that issue. I’d suggest snapping a photo of your medication bottles, so you have that information in a convenient place.
- Request Wheelchair Access Early: Request wheelchair access or other accommodation when you’re booking your ticket. That way you know it’s taken care of.
The Day of Travel
- Keep the Essentials Close: I carry my meds on board in the bag I put under my seat. That way, if it’s time for me to take my medication, I don’t have to ask anyone else to get up or hand me my bag.
- Travel Pillows Can Ease Your Ride: Wheelchairs at the airport have little to no padding, which means you can be bumped around a lot while trying to get to your gate. I’ve found that a travel pillow is convenient because it can be used as both a seat and a neck cushion.
- Consider your Bag: Having snacks and water when I travel is an important part of my travel day. Carrying a lightweight backpack helps me keep those items close but leaves my hands free. People are normally very kind to me when I travel, but I prefer to be as independent as possible, and that means being able to eat and drink as I need to without needing to rely on others.
- Take Care of Business Before Boarding: It sounds odd, but airport bathrooms are really nice when you have LEMS. They’re roomy, and there are even “family bathrooms,” so your care partner can help you if needed. It’s also much easier to use the bathroom in the airport than on the plane!
- Take Advantage of Priority Boarding: If you board before others, you can hold onto the seats as you walk. My husband usually walks in front of me when we board, so if I were to trip, he’s right there.
At my Destination
- Let Others Off First: Often, your assistive device or walker will need time to be taken off the plane and made ready for you. Unless you’re in a rush, letting others off the plane first can make you feel less rushed. Sometimes getting off a flight feels like avoiding a stampede!
- Reserve an ADA Accessible Room: I never used to think about requesting an accessible room at a hotel, but that changed when I realized how amazing it was to have a roll-in shower. In general, accessible rooms have lower countertops and wider doorways, which makes it easier to navigate the room with a walker, cane, or power chair.
- Ask for What You Need: If you need a fridge, ask for one! If you need a particular type of bed or a shower chair, ask someone at the front desk. I’ve found that hotels are usually accommodating, but you do have to be willing to speak up for what you need.
- Have a Backup Plan. Things don’t always go as planned, so it’s important to know what you might do if your wheelchair breaks, or if you miss an important connecting flight. This is when having a travel partner can make all the difference. They can help you rework a travel route or make other last-minute shifts as needed.
- Know your Rights: Travel always requires an ability to be patient and flexible, but it doesn’t mean you have to settle for less than equal access. Know that you have a right to be treated with dignity and respect.
© 2024 Catalyst Pharmaceuticals, Inc. All Rights Reserved. LEM-0397-1 September 2024