TRAVELING WITH MS:

The Ultimate Guide

ActiveMSers has prepared an exhaustive guide for traveling with a disability, with a focus on multiple sclerosis. This practical advice has been collected from fellow MSers, travel agents, airline staff, cruise lines, disability specialists, and personal experience. There are many aspects to consider when traveling with a disability, from the earliest of planning stages to packing advice to medication tips and tricks. Whether you are jetting off to explore the Himalayan Kingdom of Bhutan or driving out of town for a quick overnight at a nearby bed and breakfast, here’s how to manage all of it.

dave in wheelchair at joshua tree.JPG

As one of the most seasoned MS travelers on the planet—having explored over 50 countries on six continents—I have learned the ins and outs of touring the globe while coping with myriad challenges. Walking difficulties. Fatigue. Bathroom challenges. Wheelchair impediments (sooo many impediments). Even full-on relapses. Alas, the days when I could just touch a spot on the map and then go vanished after my 2006 diagnosis of multiple sclerosis. Navigating the globe when you are juggling a disease, chronic illness, or permanent disability is the very definition of touch and go. But damn, if I don’t still go. I seriously get around. You can, too. This guide will show you how

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BEST ADVICE FOR DISABLED EXPLORERS
 

If you read only one section of this guide, read this one.

 

 

  • Ditch the checklists. See what you can see and do not fret for a moment if you can't see it all. I know, the guidebook says you CAN’T MISS something or other. Whatever. Prioritize a few special things and let the rest unfold as it unfolds. Over planning only sets you up for disappointment later. 

  • Pace yourself. You know your body better than anyone. If you know going all-out is going to put the hurt on your body, save that climb of Kilimanjaro for the end of your holiday and recover on that plane ride. And remember, you don't have to do everything in the guidebooks for your holiday to be called a success. Choose activities wisely and build in recovery time.

  • Check the ego. You have lots of tools at your disposal to make traveling easier—use them. Wheelchairs, canes, trekking poles, scooters, rollaters, disposable undergarments, you name it. Is someone staring? Who bloody cares. And please, ask for help if you need it. People are amazingly accommodating if asked nicely with a smile.

 

  • Don’t panic. There will always be hiccups when you travel some little, some bigger. It happens. And I’ve been through so many messes: missed connections, lost baggage, shuttered hotels, no-show guides, entire legs of vacations cancelled due to unrest, unexpected MS relapses, the works. Catch your breath, count your lucky stars you are in one piece, and set about to fix the situation. Don’t let it fester! Yeah, it sucks. But it won’t ruin your trip unless you let it.

 

  • Seek a travel partner. Do not underestimate the importance of a reliable travel companion or caregiver. When you need a little extra assistance, an extra pair of able-bodied hands (and legs) can be a godsend. Treat them well. After all, this is supposed to be their vacation as well!

 

  • Eye restrooms. Mentally note all bathrooms and, when traveling internationally, avoid passing up a good one. There are cell phone apps that help you find public potties, but watch data fees overseas. And if you do, remember where it is so you can hustle back to it when nature calls. She always tends to ring at the most inopportune times!

 

  • Don't wait. Don't save that dream trip until you retire. Or until the kids are grown. Or until you feel better. MS is unpredictable; go now.

 

  • Carpe diem. Seize the day, savor moments, and make your vacation unforgettable for all the right reasons. Focus on the instances that make travel enjoyable, not on your disease.

 
dave in wheelchair on a dock.jpg


MS-SPECIFIC CONSIDERATIONS WHEN TRAVELING
 

Becoming an MS globetrotter requires a few extra steps in order to successfully navigate planet earth with a disease. This advice may apply to other chronic illnesses, but since I don’t have an ostomy bag or wear a blood glucose monitor, I can’t speak to those.

 

 

  • A doctor’s note. A letter from your doctor stating you have multiple sclerosis is a good idea. I read about a woman denied an extra drink on a flight because she looked drunk. She claimed she had MS. Now a doctor’s letter might not have helped in that particular situation because you can still be drunk and have MS, but I digress.

  • Contact info. Keep with you your MS specialist’s phone number, e-mail, and off-hours emergency number. If you are traveling out of the country, don’t forget to add on the country code when you dial.

  • Original bottles. It's probably wise that you don’t take your medication out of their original labeled containers when it comes to cryptic pills (disease-modifying injectable MS meds are okay since they are labeled). The dudes, especially in customs, don’t really like to guess what pills are what.

  • Infusions. Taking an infused MS treatment, like Tysabri, Lemtrada or Ocrevus? Be sure to plan around your infusion dates. Katmandu likely does not have an infusion center you can use. Same goes for Mavenclad, the oral medication that is given in infrequent cycles.

  • Pills. On an oral drug like Gilenya, Mayzent, Aubagio, or Tecfidera? Avoid extreme temps. In other words, don't leave them roasting in the glovebox of a hot car or exposed when you are camping overnight in Siberia in January. And if you are camping in Siberia in January, I recommend you see a therapist.

  • Injections. Taking an injectable like Copaxone, Rebif, Betaseron, Extavia or Avonex? A small, soft-sided cooler (with an ice park or two, but watch that you don't accidentally freeze your meds) works great to tote your medication and can be stored in a carry-on backpack. Taking a cooler is always a good idea when traveling with your injectables even if they don’t require refrigeration because you never know when your drugs will be sitting in a hot car while you are out on a hike.

  • Xray scanners. The Xray machines used at airports should not harm your medications. And TSA generally does not care about your sharp needles. I personally have never been stopped at security for having a boatload of potentially subcutaneous weapons, but I’ve been pulled aside for an eyeglass screwdriver that was immediately confiscated with appropriate scolding.

  • Prednisone. Before I transitioned to secondary progressive MS, I traveled with a 3-day oral course of high-dose steroids to treat surprise relapses. You may want to ask your neurologist for an advance prescription as a stop-gap measure to save a vacation, particularly if you are traveling outside your country to remote areas. That way, if you have an exacerbation on a long trekking trip, say in Nepal, a dose of oral steroids could trim your attack symptoms big time and save your vacation. NOTE: Only do this if you have previously taken oral steroids and are aware of how the drug affects you.

  • Pseudoexacerbations. Remember that there is a difference between an exacerbation and a pseudoexacerbation. According to the NMSS website, a true exacerbation “is a worsening of old symptoms or the appearance of new ones that last at least 24 hours. This is important because stress, heat, and/or fatigue (all of which easily happen while traveling) could cause a temporary symptom flare, which should clear by the next day.”

  • Exercise. Don’t forget to stretch regularly and exercise. I know it’s your holiday, but your health doesn’t take a holiday. MS researchers have found that regular exercise reduces fatigue, so even on vacation I try to squeeze in workouts, especially if I feel that icky fatigue fog start to roll in.

 
Pile of Pills
 


GENERAL MEDICATION ADVICE
 

There are some notable steps to take when traveling with medications, steps that tend to be overlooked by novice travelers. 

 

 

  • Carry on only. Always keep your medications with you as part of your carry on luggage. That’s one piece of luggage you can’t afford to lose.

  • Refrigeration. Meds require refrigeration? Call ahead to your hotel and ask that a portable refrigerator be put in your room if it does not have a mini bar. Most hotels will be able to honor that request. Note: when removing items from your minibar to make room for meds, be sure to later check your bill. Some minibars have the ability to automatically charge your bill for items removed from the fridge, even if you put them back.

  • Temperature check. If you need to keep meds chilled, consider bringing a digital thermometer that records the ambient air temperature. Do NOT store your medication in the fridge unless you are certain they won’t freeze, 36 degrees or above. One trick if you don’t have a thermometer: a bottle with just a touch of water (a tablespoon) will do nicely. Put it in the coldest part of the fridge BEFORE you add your meds. Wait at least a few hours. If it freezes, even on the warmest setting, find a new fridge.

  • Needles. Instead of lugging around a big sharps container for your needles, you might consider a needle clipper / storage device like the BD Safe Clip, allowing you to store the syringe safely. A word of caution, medical waste usually can't be tossed in the trash, so you'll need to find a place to store the empties. At least you won't get poked.

  • Extras. Bring a few extra doses just in case you do something stupid and pooch one of your injections or drop a pill down a gutter. And if the weather causes delays or cancellations, you won’t be stuck without your medication.

  • Cannabis. Medical marijuana in any form can get you into deep do-do, especially if jetting about internationally. Even driving across state lines can be cause for concern. That said, domestic travel in America with cannabis, even flying, is unlikely to land you in serious hot water unless you do something stupid. So don’t be stupid.

  • A final warning. A friend had her baggage confiscated twice--coming and going--because her drugs were packed with her checked luggage. Of course, it didn't help matters that we had a transfer in Singapore, noted for hanging folks with too much Tylenol (actually kilos of heroin, but you get the picture). Her bags were delayed for a couple of days, but fortunately her stash of pills was preventative in nature and not critical.

dave biking tetons wyoming.jpg


FAVORITE ACCESSIBLE DESTINATIONS
 

Having been to thousands of cities and towns around the globe, I can say from personal experience that virtually every place I’ve ever visited can be experienced—at least to some extent—with a disability, including if you use a wheelchair. And even if there are major accessibility issues, there are almost always workarounds if you have assistance and patience. That said, “doable” doesn’t necessarily mean “enjoyable.” Here are a few destination ideas that are more reliable than most. 

 

 

  • National parks. In the U.S., the National Park Service generally does an adequate job in accessibility. Each park’s website details ease of disability access and many have full and extremely detailed guides. Yellowstone is a standout with detailed trail guides (hills to steep for wheelchairs, steps on the trail, etc.) and their guide even identifies every wheelchair-accessible bathroom and vault toilet.

  • Major amusement parks and tourist attractions. While many of the rides may be off limits, they cater to so many people from so many walks of life and generations, that accessibility is standard. Scooters and wheelchairs are almost always available to borrow or rent at major tourist attractions.

  • Olympic cities. Cities that host the Olympic games also host the Paralympics, and that means accessibility. Cities are required to meet certain benchmarks to aid handicapped travelers, from wheelchair users to the visually impaired. Host cities like Barcelona, London, Tokyo, Vancouver, and Athens have all been improved—from sidewalks to public transportation—to accommodate disabled visitors and are noted for their accessibility. 

  • A cruise. Consider a cruise, even if you are not a "cruiser." I've traveled by ship extensively pre and post MS, and it has a host of advantages. You unpack once (great for fatigue), disability access is good (especially if you need mobility aids), a doctor is always onboard (helpful if you have a relapse), and your travel time is often at night when you are sleeping (no exhausting car rides). See my detailed cruise guide here. 

  • African safari. Want a far-flung adventure? An African safari is a good option for those with limited mobility because you travel by vehicle, which means access to A/C and that you are seated. The lodges can be spectacular (in Kenya I actually slept in a bed that was 11x9, the size of a bedroom!) and the staff will cater to your special needs. Wheelchair-accessible safaris are an option in some countries.

  • Ziplining, Water Skiing, Ballooning, Sailing, Riding Camels. For virtually every passion out there, there is an accessible solution. There are many outfitters, far too many to list here, who are specially geared to aid wheelchair adventurers and those with other disabilities. In the Grand Tetons I managed to tack on an afternoon of unbelievable handcycling with Teton Adaptive Sports.

 
Dave and Laura in box seats at Real Madr
 


PLANNING YOUR ACCESSIBLE TRIP
 

So you are going on vacation!? Woohoo! There are so many things to consider before traveling that you might need a vacation from planning your vacation. Here are some things to think about as you gear up to go on your next adventure.

 

 

  • Budget. I’ve got all sorts of rules when it comes to spending money on travel, and then inevitably I break them. In general, I prefer to spend money on experiences rather than things, so I give myself flexibility to splurge on trips. Over the years I’ve rarely regretted spending the extra cash for something special, even though at the time I’ll often think to myself WHAT THE HELL AM I DOING. But I’ll never forget watching Ronaldo score a hat trick from a sky box in Madrid instead of watching a tired touristy flamenco show that was the original (and far more affordable) plan.

  • Length. Listen to your body, it’s the ultimate arbiter. If three weeks sounds exhausting, don’t suck it up—shoot for a shorter trip. I’ve discovered that these days my sweet spot with MS is 10-14 days. Long enough to get into vacation mode, but not so long that I’m ready to go home. Plus it doesn’t exhaust my caregiver. And of course I love short weekend adventures.

  • When to go. The time of year you travel absolutely makes a difference. I prefer to travel in the off season (less standing in line, easier to get into restaurants, better seats at special events) and when temperatures are cooler (heat and MS go together like cereal and gravy). If heat wears you out, traveling when it's toasty could turn a vacation into little more than a quest for A/C.

  • Travel agents. Consider using a travel agent who specializes in making arrangements for those with disabilities, especially for those big trips. This is particularly useful if you require a wheelchair and often doesn’t cost extra—you may even save. Be sure to inform your agent about your special needs: your current mobility, equipment you will be bringing (or need at your destination), seating preferences, etc. Here is a detailed list of travel agents around the US and around the world who are experienced in working with handicapped folks. For Europe, Sage Traveling has gobs of trips in dozens of cities that are wheelchair accessible. Travel agents specializing in MS include Tarita Davenock with Travel for All and Sylvia Longmire from Spin the Globe.

  • Insurance. If the trip is $$$ and the loss of those funds would be detrimental, consider purchasing travel insurance when you book your trip (we like Travel Guard). Most travel insurance companies WILL recognize pre-existing conditions like MS, but only if you purchase the insurance within 10-15 days of putting down a deposit on the trip. If you miss that window, any MS event will void out your travel insurance and you are on your own. 

  • Doh, insurance! Now if you meant to buy travel insurance and spaced it (I can be such a dolt!), there are plans from Travel Insured International that you can purchase up 30 days after your initial deposit. Remember, "initial deposit" includes any funds to the trip down to the penny. And a word of warning: if you buy your insurance from the same company you are traveling with and they go belly up, you are SOL. So I always recommend buying your insurance from a third party and NOT through your travel agent/company or cruise ship.

Hotel Bedroom Entrance


DISABILITY HOTEL ROOM RECOMMENDATIONS
 

Extra care needs to be taken when booking a hotel room if you have a disability, particularly if you have a disability that impairs walking or if you use a wheelchair. Expect issues, even with major hotel chains. When I have the time, I plan to have a heart-to-heart with all the major players. And maybe some public spats if that’s what it takes for them to be more cognizant of disability issues.

 

 

  • Trust and verify. View your accommodations online before you make reservations. Note stairs, pool access, restrooms, exercise room, etc. Have questions? E-mail or call. You don't want to be stuck going up stairs at a B&B when you thought it was a single level. Also, don't trust "handicap accessible" declarations. What some folks think is accessible is downright laughable. The best solution if you have severe mobility issues: ask for pics and even video.

  • Trust only so much. Even then you can't trust areas to be accessible. In Peru, I cannot count the number of bathrooms that were "wheelchair accessible" that, despite appearances—oversized with grab bars galore—required getting out of the chair before you were anywhere near the toilet. Stall doors often would not close if you brought in the wheelchair. On another occasion, the bathroom door when open blocked the toilet! If I was 100% restricted to my wheelchair, the only way to access the “accessible” bathroom would be to remove the door.

  • Accessibility if you need it. A room with an accessible bathroom isn't just for folks who use wheelchairs. As one fellow member of ActiveMSers discovered, having a bathroom with grab bars was essential after an exhausting day. But if you don’t need the extra assistance, save the room for someone who needs it more.

  • Shower chairs. Some hotels will have shower chairs available if the shower is not already equipped with one, but again its smart to ask in advance or bring your own. And even that might not always help. Our lodge in the Grand Tetons only had a tub/shower combo for wheelchair users. That combo can only work if you have a transfer shower bench. They said they had one. No, they just had a standard shower chair. That wobbled. If the chair is too unstable, request another one. And if one isn’t available? Sponge bath it is! 

  • Get creative. If you travel it is bound to happen: something won’t go right, and that includes your base lodging. The bed might be too high… so ask staff to remove the box spring or request a rollaway. The room might be next to the ice maker that makes ice only between the hours of 2-4 a.m…. so ask to switch rooms or use those earplugs. 

  • Measure. Sinks may or may not allow you to roll under them, so if you are wheeling it, ask. And doorways and/or bathrooms (heck, even bedrooms) may not be wide enough for your chair, especially if you are traveling overseas, so have a tape measurement of your minimum requirements needed.

  • A forewarning. If you get an accessible room, a forewarning: it’s likely going to be bigger… and subpar. Oh, it’ll have much of the same amenities as the other rooms in the hotel, but almost certainly the view will be worse, the location will be worse, the noise disturbances will be greater, and there is nothing much you can do. Except complain. Remind management about the ADA. And demand an upgrade or a discount.

 
Researching and Writing


BEFORE YOU GO
 

As your departure date approaches, you’ll want to start doing your due diligence in the trip-planning department. The earlier the better to keep stress levels at a low burble.

 

 

  • Create a packing checklist. I have my own that I’ve used for decades, updating it for every trip. I’m constantly tweaking it depending on the type of adventure (so I don’t forget a bike helmet if I plan to bike) and the level of disability (I no longer list a cane because I use a wheelchair). There are plenty of list templates online that you can build off. Remember to add your meds and disability aids. 

  • Generate a prior-to-departure checklist. I tack this on to my packing list, and it reminds me about all the little things that tend to get overlooked. Reminders to make a plan to water plants, stop the mail and newspaper, inform the neighbors, set the DVR for that show I don’t want to miss, take down the hummingbird feeder so they don’t get pissed off drinking air, stuff like that.

  • Research online guidebooks. Sure, you can use Tripadvisor. But before you do, research your own city on that website. Not helpful. Instead I steer to the recommendation of expert travel guides. Frommer’s, Fodor’s, Moon, and Lonely Planet. For short adventures, I’ll cut and paste advice. For longer ones, the $15 is a pittance compared to what my trip costs. 

  • Get specific. For a trip to Yellowstone, I researched specifically for wheelchair advice in the national park. I skimmed a handful of blogs and cherry picked their best recommendations. I might have skipped an out-of-the-way accessible trail that wasn’t trumped in any of the mainstream guides, but one wheelchair reviewer said it was a must see. He was right.

  • Download maps. If you are traveling internationally or to areas with sketchy cell service (hello Death Valley!), this is especially helpful. Maps are useless if your phone can’t access them, and overseas they can chew up gobs of data if you try to load them. While Google Maps is the standard, I especially like HERE WeGo (apps for Apple and Google Play). Their maps show stairs in the pedestrian mode, so if you use a wheelchair you can avoid sidewalks with stairs, which I discovered are surprisingly common in Chicago.

  • Download apps. Can you say multiple sclerosis in 35 languages? If you are traveling to a country where you don't speak the language, then download onto your phone the free Accessible Travel Phrase Book PDF by Lonely Planet. Asking for an accessible bathroom, an elevator, and countless other essentials when you have a disability just got way easier. There are many other accessibility apps, including those that help you find bathrooms, that could be a boon in your travels.

 
dave in a wheelchair with a pile of suit


WHAT TO PACK
 

I have a detailed “trek checklist” that I have used for decades, expanding (and deleting) items as my level of disability has progressed. Before each trip, I print it out and cross off items after I round them up. I recommend you create one for yourself. 

 

 

  • Handicap placard. Have a handicap placard? Bring it! Even if you never plan to drive. With proof of a disability, many entrance fees are waived for you and your caregiver, especially outside the US. If your country offers a disability identification card, don’t leave it at home.

  • Walking aids. Ideally, bring multiple forms of walking aids. Why? If you lose your cane, you still have your trekking poles and vice versa. Also, if you primarily use a rollator/walker, bring a cane or forearm crutches! I heard from one MSer who had so much trouble with cobblestone streets in Italy that her rollator was essentially useless. The cane, although it meant slower going, saved her vacation. A pair of forearm crutches offers three times the support of a single cane and can make getting around on uneven surfaces a cakewalk. Incidentally, I don't like the cane/seat combo (oh, but it sounds so convenient): it's a crummy cane and a crummy seat. Get your pants a little dirty and sit on a curb if you must.

  • Gait belt. I travel with one now (I own this one), and it should have been in my arsenal a long time ago. Basically, a gait belt secures around your waist and makes for a great handhold for a caregiver or crew member to grab and assist you. It can be used for transfers (say bed to wheelchair), help you stand after a fall, or save your bacon in a dicey situation, like getting off a tender on a cruise. I don’t wear it around, but it’s nice to know it’s available if needed.

  • Cooling vests and wraps. Since usable freezers while on the go can be hard to find, my preferred all-around travel vests are those phase change vests that recharge in ice or at room temperature. The easiest cooling vest to pack is one that is evaporative, since it is lightweight uncharged, but they perform poorly in humid conditions. Refer to ActiveMSers’ cooling vest guide for more. Another convenient cooling companion is a lightweight wrap that you dampen, like those from WrapMeCool.

  • Carry-on luggage. Smart packing advice taken from veteran travelers: when flying, make whatever you bring fit into a single carry-on bag, especially if you are going to be traveling to multiple destinations. Yes, this includes if you are going overseas for three weeks. You'll never lose a bag, it's far easier to handle than larger luggage, substantially lighter, and you can pawn it off on a travel companion if need be! This one from Briggs & Riley checks all the boxes and comes with a lifetime warranty.

  • Or a large wheelie bag. I know, I just recommended small. But as my disability has progressed, I’ve gravitated to one large shared bag (we use this one, it is pricey but dynamite). The larger bag is always checked, easily hold all of my aids, and is convenient on driving trips. Laura rolls this while I roll my wheelchair. If need be, she puts it on my lap, and I become the luggage cart. If we add on luggage, it is usually a carry-on and a backpack, which can also carry loose wheelchair parts when flying.

  • Sun protection. This sounds like a no brainer, but with heat being an issue for MSers, every cooling trick helps. I like a wide-brimmed floppy sun hat. I’ve tried sun-protective clothing (Solumbra is highly recommended, but it’s still warmer than I’d like, so I tend to use sunscreen liberally. Finally, a UV umbrella makes a difference, and our testing confirms they really do keep temps cooler under their canopy. Amazon has many options, and this lightweight version would be ideal for travel. Umbrellas also have an added benefit. You know, for keeping you dry in a rainstorm.

  • Lighten up. I like a tiny, lightweight digital camera or cell phone (keep a smartphone in airplane mode if abroad to avoid outrageous bills; FaceTime and WiFi can still be used) to record my travel memories: photographs, audio and video. The weight savings and convenience of just slipping it in your pocket is invaluable. Of course an SLR is great, but not so great to lug.

  • Portable grab bars. In the past when stability aids weren’t mandatory but merely helpful, I’ve used portable suction cup grab bars (I recommend this one). These are a boon when staying in a standard room or bed and breakfasts when you need a little extra help getting in and out of the shower.

  • Rolling considerations. If you need a wheelchair when traveling, a foldable manual chair, especially one with removable wheels, offers the most flexibility. Rigid chairs usually work fine, but not in all situations. Scooters and electric wheelchairs may limit you in ground transportation options, but if you use these devices you already know that drill. Renting a wheelchair is an option in some countries (e.g., most pharmacies in France rent them), but I’d only rely on that in a pinch. Renting scooters is also an option. You can have them delivered directly to your hotel. I’ve tested and reviewed the best travel mobility scooters.

  • Bedside commode. For road trips, this can be an unexpected boon. Bathroom out of service? Lines too long? Rest stop closed? Restroom not wheelchair accessible? If you *need* a bathroom and can’t do the squat pot, having one of these in the car for emergencies is a nice security blanket. Plus you could use it as a shower chair. Ideally find a spot out of the way (duh) and for bonus privacy, you could always drape a sheet or pop an umbrella.

 
southwest airlines handicapped entrance.


FLYING WITH A DISABILITY
 

One of the most stressful aspects of traveling with a handicap can be the simple act of flying. For many of us, taking to the air used to be so carefree, but now hazards are everywhere. Here’s some advice to help you breathe easier.

 

 

  • Preboard. Take advantage of early boarding and ask a flight attendant for help if you need it. If you are unable to walk, you’ll want to request an aisle chair. Note: airlines have various rules. Southwest lets you board early and gives you extra time, while other airlines may have you go on after first class and business. And then others might actually have you board dead last, because, you know, they are assholes.

  • Walking aids. Canes are allowed aboard airplanes, trekking poles are as well (tell anyone who asks that they are mobility aids), ski poles are almost always frowned upon. Forearm crutches are no problem, but a flight attendant may have to store them in another area on the plane if they don’t fit in your overhead bin. If that happens, you’ll need to ask for them back for restroom visits or be relegated to seat surfing. Note: Picked up a cool sword-cane in Kenya? If you can't fit it into your checked luggage, I guarantee you it will be confiscated, walking aid or not. And then all you'll have is a cool sword-cane story of woe.

  • TSA advice. “One thing you have to watch is that the TSA loves to search bags that are carrying cooling vests/hats/scarves that have hydration beads. Avoid someone pawing through your luggage. Take them in your carry on and inform the screener.” — Mary, Washington

  • More TSA advice. A United Airlines security rep wants me to remind all of you with cooling vests NOT to actually wear it when going through security. You know what those gel packs look like when they scan your body? Like a bomb strapped to your chest! Take it off or tell your friends to break out their cameras to film the chaos.

  • Final TSA advice. Review the rules for disabilities and medical conditions here.

  • Wheelchair assistance. “Request wheelchair assistance when booking your flight if you are not bringing your own. When you check in, tell the ticket agent that you had requested assistance and they will call someone for you. This person will take you and whoever is traveling with you thru security—without having to stand in the long lines and right to the gate. If you have to switch planes because you’re not flying direct, they will have someone waiting for you to take you to the next gate. If there isn’t anyone there, let the gate agent know and they will call for someone for you. When you arrive at your destination, someone will be there and take you to baggage claim. Remember to take some dollar bills to tip with. The wheelchair assistance will help you conserve your energy.”     — Mary, Oklahoma

  • Personal wheelchairs. If you are traveling with a personal wheelchair, be sure to gate-check your wheels, so that you can take it all the way up to actually boarding the plane. When you leave your chair at the plane's entry, detach all easily removable items and take them aboard the plane personally as a carry-on item. That includes seat cushions, footplates, and armrests. I like to bring a small stuff sack to, well, stuff everything into so that my wheelchair knickknacks stay in one place, limiting the risk of something falling out of the bin and clunking an innocent stranger on the head. And by taking gear with you, it will minimize the risk of losing an important piece of equipment. It will seriously suck if they lose a left footplate and you've got to enjoy your entire vacation with your legs crossed... even when you don't have to tinkle.

  • TSA Precheck. Is TSA Precheck worth it ($85 for 5 years, Global Entry is $100)? If you fly more than once or twice a year, probably. You get to speed through the security check, waits are usually less than 5 minutes, and you get to keep your shoes on, belt on (I you are brave enough to wear such things with an unpredictable bladder), and your liquids can stay in your bag. If you use a wheelchair, there is usually no pat-down and they just test your hands and chair for explosive residue. Super quick and easy.

  • Batteries. If you are traveling with a scooter or electric wheelchair, it's best if you have a "gel cell" or "dry cell" battery. If you have a wet cell battery (a rarity these days), the airline will have to remove it from your chair for special storage, a hassle. Again, don't forget to remove seat cushions, etc., to prevent them from getting lost in the belly of the plane as your scooter will either be gate checked or go through checked luggage. Don't forget to secure the key (or power pin) with something a bit stronger than a rubber band. Some suggest fishing line. And setting the throttle on the slowest setting and taping over it will help prevent speedy joyrides.

  • Weight considerations. How much does your scooter or wheelchair weigh? If it is too heavy, it may not be allowed on some flights. We recommend calling ahead to check for any restrictions.

  • Power chair tip. On your power chair, if you can remove the joystick, that is recommended. Or at least point it downward. Those little buggers, sticking up at attention, have an uncanny ability to attract errant luggage.

  • Curbside check-in. Consider using curbside check-in and the luggage porters when you arrive at the airport. Saving your energy for a few bucks is usually worth it.

  • Recommended seating. Request an isle or forward seat on the airplane. The closer you are to the front of the airplane, the less walking you have to do. Another reason: hey, sometimes when we MSers have to go to the lavatory, well, we really gotta go. If the front of the plane is not available, head to the rear. On international flights, I always check www.seatguru.com to find seats close to the toilet, since there are a number of them located in various areas of large planes. Also note that in the last row the seats may not recline fully, but if you have walking aids, you often can store them behind the seat, which makes retrieving them cake.

  • Change of clothes. Speaking of bathrooms, it wouldn’t hurt to have a change of clothes in your carry on. In fact, I’d consider this mandatory. Sometimes our bodies don’t do what they are supposed to do, and wearing clean clothes is a lot better than wearing wet clothes washed in the airplane lavatory.

  • Bathroom advice. And I’d suggest hitting the restrooms just before boarding. Now, of course, don’t dehydrate because of the above advice. Drink plenty of H20.

  • Jetlag. Jetlag may be mitigated with a sleep aid and it can make even an 18-hour plane trip a relative breeze. BUT a few important words of caution. 1) Never drink alcohol and take a sleep aid. 2) Don't try it for the first time on an airplane. 3) Only take it if you have a companion. A United Airlines security rep warned me that altitude, alcohol and Ambien can be a dangerous mix.

 
dave trekking in Paro, Bhutan.JPG


AT YOUR DESTINATION
 

Pat yourself on the back, you’ve arrived! Here are some tips to make your holiday enjoyable and stress free. Okay, there will always be a little stress. Sorry.

 

 

  • Time your adventures. You know your body. If you have morning energy and splat in the afternoons, maximize mornings. Personally, my bladder gives me fits until 10 or 11, so we rarely are on the road before then. It is what is!

  • Don't rush. You don't have to cram everything in. Be selective and enjoy what you do. When you get home you'll have far better memories than racing the clock to hit all of the Smithsonian Museums in one D.C. afternoon.

  • Daypack. I always have one and it has all the essentials. A touch of extra medication, a water bottle, hand sanitizer, a lightweight raincoat or poncho (I’ve got this for my wheelchair), and an emergency clothing pack (replacement adult undergarment, sanitizing wipes, and a pair of pants).

  • Skip to the front. If you are using a wheelchair, especially internationally, museums and sights are often free and you go straight to the front of the line, no questions asked. Eiffel Tower with a 2-hour wait? Bam, next elevator. Hordes of people surrounding the Mona Lisa? Bam, front-row access, even closer than any able-bodied person. Sistine Chapel access? Bam, through back corridors and hidden passages of the Vatican.

  • Toilet scouting. When you get to a cafe or hotel that you will be hanging out at for a bit, ask where the toilets are located before you need them. Some are so well hidden, you would never find them. Ever. At one hotel after dinner I was befuddled as to where the bathrooms were. It was around a screen, in a closet, behind a closed door. Also, some are downstairs, requiring a new plan if stairs are off limits. In one case, a waiter took me to a different building altogether to get me to any easy-access toilet. If you don't see an accessible bathroom, ask. One cafe had it hidden behind brooms and boxes.

  • Wheelchair assistance. If you need help getting around the airport or a massive hotel or a museum, ask. Don’t be shy. This is your vacation and you don’t want to spend two days recovering from what amounts to stubborn pride. Most facilities have wheelchairs you can borrow, although be forewarned: you'll often get a beater. On a trip to Boston, I got overconfident and failed to bring my wheelchair. And none were available to rent. So we switched hotels to one that provided a chair to guests and used it all weekend. It saved our trip from being a series of short cab rides.

  • Take advantage of breaks. Seek shade, drink some icy beverages, and sit down when you can. The energy you save will come in handy later, trust me.

  • Splurge. Sometimes convenience costs a little extra. It's often money well spent. Remember that.

  • Sidewalks. If you are rolling, your travel companion may need to scout ahead and alter your route to find curb cuts, since some will be blocked or nonexistent.

  • Folks are accommodating... if you ask. A table by the wall (perfect for stashing my forearm crutches), a spot near the bathroom (for those uncertain times), a seat upfront (to avoid the maze of diners).

  • Souvenirs. Okay, so you found some incredible (and easily breakable) souvenir on the last days of your trip that will not fit into your luggage with all your clothes ... because you listened to me imploring you not to take a large suitcase. And if you ship it home, odds are high it will break. What to do? Ship home your clothes and toss your new treasure into your bag. 

  • Keepsakes. Laura and I have collected a souvenir from virtually every place we’ve ever traveled. Now before you think our house is nothing more than a pile of cheap trinkets and commemorative shot glasses littering every available shelf, I’ve got to let you in on a secret. Christmas ornaments. They are small, easy to pack, and affordable. Every holiday we decorate the tree together and relive our adventures and experiences for a good month before tucking them away to get discovered anew the following year. Um, yeah, we’re gonna need a bigger tree.

 

That’s a wrap, our best recommendations and advice for traveling with multiple sclerosis or other disabilities. For more specific tips on how to cruise with multiple sclerosis, don’t miss our exhaustive guide on cruising with a disability.

 

Happy and safe, stress-free travels!

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