5 ALS Travel Tips
I have been lucky enough to travel a fair amount in the 4 years since my diagnosis at different stages of my ALS progression. When I initially book a trip I get a jolt of excitement, envisioning getting out in the world, beyond my living room and even the backyard. Ah, the sense of adventure, escaping the same boring routine. This feeling is followed immediately by panic because while I will be taking a vacation, unfortunately ALS will not. So I take a deep breath and get to planning. Here are five ALS travel tips to help you prepare for your next trip and ditch the panic.
Set your expectations. When I think of my favorite parts of vacation I think of action-packed days, jumping in the water, exploring on foot, trying all the food! These days vacation looks, well, different, but you can still have a blast. Don't put pressure on yourself to keep pace with others or your pre-ALS self. It might take you some time to find your vacation groove, so give yourself (and your caregiver) some grace. It's helpful to communicate your expectations for the day and plot out meal times and bathroom breaks loosely.
Resist the urge to think about all the things you can't do and focus on what you are fully enjoying. Time with family and friends, beautiful scenery and a break from the mundane. It's okay to have moments of frustration and even a total change of plans based on how you feel. Be prepared to go with the flow and make adjustments as needed.
Do your homework. Unfortunately, accessibility isn’t a guarantee, so you need to do some research before arrival. Even if you booked accessible lodging, always reach out to confirm if there are stairs, if the doorways are wide enough for your mobility aids and what the bathroom situation is. Contact a few restaurants, bars or attractions you plan to visit to confirm their accessibility.
Ever since I've gotten an accessible van, the idea of transferring into a regular vehicle makes me squirm. Luckily, you can rent an accessible vehicle across the U.S. through companies like Mobility Works, so comfortable car rides are possible even in destinations you have to fly to. Pro Tip: ALS Ride for Life has a grant program for accessible vehicle rentals that covers the cost of the rental and connects you to their nearest rental partner at your destination. (Thank you HAS sister Desi for sharing this program!)
Taking a trip to the beach? Inquire about beach wheelchairs. If they're available, there is usually a limited amount, so you may have to reserve in advance. I take a trip to the Jersey Shore with my family every summer and a quick Google search led me to a free beach wheelchair rental program from the township. What a find! Lastly, look up the nearest emergency department just in case. Not that you would ever dream of having an ALS whoops on vacay, but better to be prepared.
Consider your mobility devices. It's important to consider bringing different mobility aids to conserve your energy and make things easier and more enjoyable. Warning: You may need to leave your ego at home.Just because you can walk doesn't mean you should walk the entire time. Consider bringing a foldable power wheelchair to give your legs a break. Some charitable organizations like CCALS or Team Gleason will gift you a device like this. Not ready for a wheelchair? I get it. You can also consider renting a scooter at the location you're visiting. Hotels usually can recommend a rental company nearby and I've personally used Mobility on Wheels and Scootaround for scooter rentals.
Primarily use a power chair? Me too! I recently got a manual chair from Ki Mobility to use for travel and it made things much simpler since my steering ability is waning. It's lightweight (30 pounds), folds and is almost as comfortable as my big girl chair with a supportive back, headrest and a roho cushion. The process for getting a chair like this is usually a couple months, so advanced planning is required. If you decide to bring a new device with you, be sure to test it first so you're familiar with it and comfortable in it before the trip.
Make your airport plan. Flying with ALS definitely comes with challenges, but there are also some perks you'll want to take advantage of. Contact the airline in advance and explain your mobility limitations, they can upgrade you to a bulkhead seat. No more squeezing in the back of the plane. When you arrive, request an escort. This allows you to skip the security line like a VIP.
If you're bringing your own wheelchair chair, you can drive it right to the gate. Before gate checking your chair, remove and carry on anything that can easily pop off to avoid losing precious pieces like your joystick knob, cushion and headrest and footrests (if removable). Label each part with your name and contact information. Bring an empty tote bag that fits all of these parts and carry on to the plane.
I don't know about you, but my post-diagnosis booty is lacking some cushion, so be sure to bring your own. The cushion from your wheelchair works great. Plop that puppy down right before you transfer to the seat. Think you'll need a bathroom break on the plane? Make sure there's an aisle chair on board and the bathrooms at back of the plane can be combined into one for a more accessible experience.
Create a master list. Where are my obsessive list makers? This is your time to shine! Take note of all the miscellaneous items you use throughout the day from adaptive utensils, straws, your favorite slippers, to that cream you use when you get a random rash. Don't overlook anything. For example, I can no longer just jot down ‘toothbrush’ because now I need the little cups to drink from and the small bowl I spit into since I don't reach the sink.
Think through your routine and be sure to include anything therapeutic you use like hand splints, AFOs, cough assist, or suction machine. Also pack your just in case items that you don't use every day like the pump for your wheelchair cushion, ambu bag if you use NIV, allen wrenches for your chair, extra meds and formula - you never know when you could be stranded in paradise. You'll also want to bring a sealed replacement for your g-tube and trach, if applicable, just in case you need an unexpected change. I learned the hard way that most hospitals don't carry mic keys or low profile feeding tubes when my tube fell out during a trip to Miami, but that's a story for another blog!
Try to recreate your environment so you can be as comfortable as possible while you're out of your element. A few of my travel must haves are a portable electric pill grinder, food scissors and a portable bidet.
The idea of traveling with ALS can be daunting, but with the right preparation it's totally doable. I hope these tips help you prepare for your next trip and encourage you to book one if you haven't yet. Get out there and make some memories. You deserve it.