Traveling with multiple sclerosis doesn’t have to be an ordeal. But it can be a bit more complex, especially if you have a bit of disability (mobility wise especially) or are on a disease-modifying therapy like the injectabes (Copaxone, Rebif, Avonex, Betaseron, Extavia). All are shot therapies (needles+airplanes=hmm), and all require you to keep an eye on temperature: not too cold, not too hot. Here’s some practical advice ActiveMSers has culled from fellow MSers and personal experience—I've traveled to 50 countries on six continents, many of them after being diagnosed.
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.
Keep with you your MS specialist’s phone number, e-mail, and off-hours pager number. If you are traveling out of the country, don’t forget to add on the country code when you dial.
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.”
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.
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.
Taking Tysabri, Lemtrada or Rituxan? Be sure to plan around your infusion dates. Katmandu likely does not have an infusion center you can use.
Don't underestimate the importance of a reliable travel companion. When you need a little extra assistance, an extra pair of able-bodied hands (and legs) can be a godsend.
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!
If you are traveling to remote areas, in particular if you are venturing outside the US into non-industrialized countries, you may want to ask your neurologist for a prescription of oral steroids (Prednisone). 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.
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.
Planning Your Trip
Consider using a travel agent who specializes in making arrangements for those with disabilities. This is especially useful if you require a wheelchair. 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 US who are experienced in working with handicapped folks: http://www.disabledtravelers.com/travel_agents.htm. For Europe, Sage Traveling has gobs of trips in dozens of cities that are wheelchair accessible: http://www.sagetraveling.com/
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.
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.
A room with an accessible bathroom isn't just for folks who use wheelchairs. As one ActiveMSer discovered, having a larger bathroom with grab bars is especially helpful after an exhausting day.
Some hotels will have shower chairs available if the shower is not already equipped with one, but again you better ask.
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.
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. If heat wears you out, traveling when it's toasty could turn a vacation into little more than a quest for A/C.
Consider a cruise, even if you are not a "cruiser." I've traveled by ship extensively pre and post MS, indeed one trip was nearly four months that took me around the world, 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). Recommendations? I like Alaska during the summer, the Caribbean during the winter, and Europe for the fall and spring. Note: there are travel agencies that specialize in adaptive cruise shore excursions.
Want a more far-flung adventure? An African safari is great because you travel by 4x4, 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. Of course I can personally recommend any number of great trips, so feel free to e-mail me:email@example.com.
Purchase travel insurance when you book your trip (we like AIG 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.Now if you meant to buy travel insurance and spaced it (I can be such a dolt!), there are plans from Travel Insured International (www.travelinsured.com) 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.
Unless you need them to help you walk around in the airport, pack your trekking poles in your luggage to avoid juggling two poles. 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, just seat surf to the bathrooms. Better yet, you could be lucky enough to own a set of jointed forearm crutches, like this trick pair developed by Dick Fate: https://www.youtube.com/watch?v=_iMEJao8GOw. They fold up in a jiff and can be stored under the seat in front of you.
The easiest cooling vest to pack is one that is evaporative, since it is lightweight uncharged. But they perform poorly in humid conditions. Since usable freezers can be hard to find, my preferred all-around travel vests are those that recharge in ice (Glacier Tek's vest, www.glaciertek.com) or at room temperature (First Line Technology's vest, www.firstlinetech.com).
"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
If you are going to carry on your cooling vest into the plane, a doctor's note is extremely helpful or it could be confiscated due to the gel or other filling. Evaporative vests are okay if they are not charged. On a recent trip, TSA let my gel vest through without a question, although I announced I had one before sending it through Xray.
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.
I like a tiny, lightweight digital camera or cell phoneto record my travel memories: photographs, audio and video. The weight savings and convenience of just slipping it in your pocket is invaluable.
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.
Get a wheelie bag if you don’t already have one. No sense in burning up energy lugging around your granddad’s old military-issue trunk because it looks cool and has a lot of stickers.
The absolute smartest packing advice taken from veteran travelers: 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!
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 cake walk.
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 recent 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.
A personal favorite travel companion in the summertime is a travel umbrella, in particular the sun-safe umbrellas from Gustbuster (order at www.innovagolf.com). They handle winds at up to 55 mph and provide instant shade and relief from the heat (great for spectator sports or long lines outdoors). Plus, it comes in kinda handy if it rains.
If you need a wheelchair when traveling by plane or ship (and you are not a full-time scooter user), most MSers suggest taking a manual chair if at all possible. You don’t have to worry about recharging batteries and dealing with the hassles of stowing the chair. Manual chairs can be brought up to the gate without a problem and are easier to tote in cars. If you own one that is lightweight and has removable wheels, even better.
You can rent wheelchairs easily in some countries. For instance, in France virtually all corner pharmacies have a chair to rent (the quality is iffy, though), usually for less than 10 Euros a day. This made train travel much easier as I didn't have to lug a wheelchair on and off public transport, as I would just get a chair in our destination town. But you can't always count on this. In Italy, wheelchairs were impossible to find.
So you don't have to lug your scooter around or worry about getting it broken, rent one at your destination. Companies will usually deliver your ride directly to your hotel and then pick it up when you are finished, dramatically lowering the hassle factor (how many cabs are equipped to tote a scooter). Thanks for the great tip, Ruth!
On the Plane / In the Airport
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 removeable 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 knicknacks 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.
"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
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 pervent 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 rubberband. Some suggest fishing line. And setting the throttle on the slowest setting and taping over it will help prevent speedy joyrides.
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.
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.
"Look carefully at the airports in which you will change airplanes to know how far you will have to go between gates. For example, in Perth and Brisbane, Australia, the domestic and international terminals are actually separate airports. Not an easy transfer for the mobility impaired. And, always allow longer time than suggested to make any transfer." - Mary, Washington
Take advantage of early boarding and ask a flight attendant for help if you need it.
Consider using curb-side check in and the luggage porters when you arrive at the airport. Saving your energy for a few bucks is usually worth it.
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 us 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.
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.
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 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.
If you are on lots of meds, keep them on your person. 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.
Picked up a cool sword-cane in Kenya? If you can't fit it into your checked luggage, I can pretty much guarantee you it will be confiscated, doc note or not. And then all you'll have is a cool sword-cane story of woe.
At Your Destination
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.
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.
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.
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.
Sometimes convenience costs a little extra. It's often money well spent.
If you are rolling, you may need to scout ahead and alter your route to find curb cuts, since some will be blocked or nonexistent.
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.
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).
MS Medication and Travel Advice
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 (so it won’t count as an extra carry-on). Copaxone, Avonex, Betaseron and Extavia should never be stored at temperatures higher than 86 degrees Fahrenheit; Rebif should never see the light of day above 77 degrees Fahrenheit. Taking a cooler is always a good idea when traveling with your injectables. Even if you are on Betaseron or Extavia, which don’t require refrigeration, you never know when your medication will be sitting in a hot car while you are out on a hike.
On an oral drug--Gilenya, 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.
Always keep your medications with you as part of your carryon luggage. That’s one piece of luggage you can’t afford to lose.
It’s smart to have a prescription for your drugs as well as a letter from your doctor stating that you have multiple sclerosis. 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.
The Xray machines used at airports should not harm your medications.
If need be, 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.
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.
Bring a couple of digital thermometers that record the ambient air temperature. Put one in the hotel fridge and keep one in the cooler you are transporting your drugs in. Do NOT store your medication in the fridge unless you are certain they won’t freeze, 36 degrees or above.
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.
Instead of lugging around a big sharps container for your needles, you might consider a needle clipper / storage device. These little gadgets clip off the needle (they can store up to 1,500 needles), allowing you to store the syringe safely. Look for one at your local pharmacy (BD Safe-Clip is one brand). 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.
Bring a few extra doses just in case you do something stupid and pooch one of your injections or drop a bill down a gutter. And if the weather causes delays or cancellations, you won’t be stuck without your medication.
Have other travel tips you’d like to share with fellow active MSers? Write me: dave@ActiveMSers.org.