Have Arthritis, Will Travel

Summary of a presentation at the Living with RA Workshop at HSS


Melanie J. Harrison, MD, MS

  1. Introduction
  2. Timing Your Trip
  3. Choosing a Destination
  4. Booking a Hotel
  5. What to Pack
  6. Getting Through Security
  7. Luggage
  8. Booking Sightseeing Tours
  9. Consult Your Doctor Before Traveling
  10. How to Get There
  11. Medication Refrigeration
  12. How to Pack Medication
  13. Additional Helpful Hints
  14. Traveling within New York City and its Suburbs
  15. Conclusion

Introduction

Thanks to the Americans with Disabilities Act, there is much more information than in the past about traveling with conditions like rheumatoid arthritis (RA). A growing segment of the travel industry is becoming more aware of customers with special travel needs, and there are many things you can do when traveling with RA to make sure your trip is as enjoyable as possible.

Timing Your Trip

The first thing to consider is when to go on your trip. If you know there is a particular time when you have flares (e.g., in the heat of summer or right after the holidays), avoid planning trips during that time of the year.

Schedule your departures during non-active hours to avoid standing in long lines and being jostled in crowds. Speak with the airline or resort staff to find out when the low traffic times are. (Friday through Monday is typically the busiest time in airports.) Another advantage to traveling during off-peak hours is that there are more staff members to help you based on your specific needs.

Be sure to schedule a time to recuperate and acclimate upon your arrival. Consider adding an extra day to your itinerary so you can be sure to find some rest after arriving.

To try to avoid arriving tired, stiff, and uncomfortable. Avoid rushing; provide yourself with long breaks during your trip. For example, if you are traveling somewhere internationally and have a layover, instead of just boarding the next plane, schedule a day between the legs of your flight and spend a day or two in the layover country - not only to rest, but to enjoy your surroundings.

Choosing a Destination

Be realistic about choosing a destination. You can take a vacation from many aspects of your life, but you have to take your RA with you. Plan ahead and be practical about what your body can do.

When deciding where to travel, there are two major things to consider: environment and climate. If you know you do not do well in heat and humidity, going to the South or to a tropical location in the height of summer may not work for you. 

Consider the distance of your destination from your home. How long will travel take? How worn out will you feel once you get there? Also, how challenging will it to be for you to be far away if you need to get back to your doctor or to your home to recover?

Research the availability of local transportation at your destination. For example, if you want to go sightseeing, find out if there will be taxis, bus services, or other means of transportation. Resorts where everything is on one property may be a good idea for anyone with limited mobility.  Find out if there is transportation from the airport to your accommodations and if it will be readily available after you disembark the plane when you may be feeling stiff and achy. 

Investigate the types of activities that will be available at your destination. Consider not only what you will be doing, but also activities for the people you are traveling with. If you need to rest at a certain time, you do not want to feel an obligation to do something you’re not feeling up to in order to entertain your companions.

Disney World in Florida is one of the best places to visit if you have any limitations in mobility. They make many resources available for people facing different illnesses. For example, they have scooters that can help with your mobility and staff members who can assist you. Also, there are many hotels and restaurants on the grounds, thus keeping everything close together.

Booking a Hotel

There are three things to consider when booking a hotel:  Location, location, location.

Hotel location can be one of the key factors in making your trip comfortable. If you are going to a resort and everything will be in close proximity, just consider how far the resort is from the airport or station where you’ll be arriving. However, if you are staying in a city and will be sightseeing, you will want to know how close your accommodations are to local transportation and the places you would like to visit.

Be aware of hotel facilities. While having a spa, pool, or exercise room may help you loosen up your joints at the end of the day, there are some amenities that are just as important. First, find out if they have a restaurant and room service. This is key because if you don’t feel up to leaving the hotel at mealtime, ordering room service can be very helpful. Another way to be sure you have food and beverage on hand is to request an in-room refrigerator. It can also be helpful for refrigerating medication.

When making reservations, ask the hotel staff to tell you exactly where your room will be. Find out its distance from particular amenities and whether there are steps, ramps, or elevators near the room. When booking your room, request a location close to the elevator and on a lower level in case there is a blackout or some problem where you cannot take an elevator up or down. Also, if you are traveling alone or have an emergency, hotel staff can more quickly aid you if you are closer to the lobby.


Let the front desk know if you have any mobility issues, especially if you are traveling alone. If there is a fire or an emergency, they are required to make sure you have assistance in evacuating the hotel. 

What to Pack

When packing medication, include prescriptions and over-the-counter remedies you  think you might need. If you are having a flare-up and also have a headache, you want to avoid having to leave to find a drug store.

Pack a list of the medications you are taking and include a list of medication allergies. Make two copies of the list; leave one in your room and keep another with you.

Bring a brief medical history in case of emergency. It is easier to provide a physician with a list rather than explaining your medical history. Include the contact information for your physician and your rheumatologist.

Be absolutely sure to bring your insurance information. If you are purchasing travel insurance, check to see if they will cover a pre-existing condition. Most do not. It is best to contact your medical insurance company and ask them what to do in case of an emergency. 

Wear your MedicAlert® bracelet. This is especially important if you are on steroids. A serious accident or injury could create a situation known as steroids-related shock. If you have been on Prednisone for up to 6-8 weeks in the last year, you should have a MedicAlert® bracelet that says you are - or have been - on steroids. There is a number they can engrave on the bracelet that allows health care providers to call and obtain important information. Remember to keep this information up to date. 

Other key items to consider packing:

  • Your own food and drink for taking your medication or if you have any long delays. Energy bars can be especially helpful.
  • Travel sized heat packs and cold packs.
  • Assistive devices, even if you only use them occasionally. If you use a tool to button your shirt, devices to pick up your silverware, or similar tools, be sure to bring these items. Flares can happen at any time, so bring all of the assistive devices and aids you might need.  
  • A cervical collar or horseshoe pillow to ensure that if you fall asleep while traveling, your neck will be supported and you can avoid stiffness.
  • Any special pillows you normally use at night.
  • A nightlight or a flashlight and batteries to prevent being disoriented at night.
  • Comfortable clothes and shoes are a must.

Getting through security

Canes and walkers are generally allowed, but check with the airport to make sure you are meeting the most up-to-date security requirements. Walkers and canes have to be stored during takeoff and landing, but they can be returned to you during the flight so you can move around. Do not put canes or walkers in your checked luggage in case your luggage is lost. Remember to put an ID tag on your assistive devices. Canes, walkers, and medication in insulated bags do not count as your limited carry-on pieces.

Bring a letter from your doctor about your medical history and the medications you take. This will provide backup if security questions you.

Luggage

Select a bag on wheels with a handle that will lock in the upright position. Then push the bag instead of pulling it to avoid strain on your shoulders. Even some small bags like knapsacks and computer bags are equipped with wheels and can help you avoid stress on your joints.

Do not lift your bags when you are checking them, going through security, or putting them in the overhead bins. If you need help getting your bag through security, let someone from the airline know in advance that you are going to need assistance and they will send somebody down to help you.

Although it’s pricey, you may consider the possibility of sending your luggage beforehand via UPS or FedEx.

Booking sightseeing tours

Plan ahead and understand the pace of a tour before you book it. If it is a bus tour, find out how many times you are going to have to get on and off the bus. Ask if it is a full size bus or a minivan and if there will be a guide to help you. Find out if the tour bus will drop you off close to an attraction’s entrance or if you will have to walk a long way to get there.

If the tours are very structured and limited by time, and you need to take a break, the tour may be too restrictive for you. Find out when you are planning your trip what each sightseeing tour entails.

Some tours allow you to get on and off the tour, which allows you to have more control over your pace—and enjoy smaller segments of the trip. There are also some “flexible tours” where you can enjoy one part of the tour on one day and then join another part of the tour the next day. Some senior tours will even allow non-seniors to participate.

Consult Your Doctor Before Traveling

Many RA patients are on medications that suppress their immune systems, so ask your doctor about the kinds of diseases you might encounter if you are traveling, especially if you are going overseas. Flu season varies depending on where you are, so you may need a flu vaccine when on a trip when otherwise you would not have needed it at home. Make sure your other vaccines are up-to-date. Travel to some locales requires certain kinds of immunizations that RA patients may not be able to receive.

Keep in mind that as you travel across time zones, you may need to adjust the times of your medications. This is especially important with steroids, which have to be administered at certain intervals throughout the day. Speak to your physician to determine how to best address this timing issue.

Discuss an “in case of emergency” plan with your doctor. He/she may be able to tell you how to alleviate certain symptoms. Your doctor might be able to recommend a rheumatologist where you are traveling

How to Get There

Air Travel

Try to book a non-stop flight or direct flight.

Arrive extra, extra early. This gives you more time to talk to the airline people and to let them know what your needs are. The following are simple tips to consider as you arrive at the airport:

  • Get assistance at the airport when you arrive, when you make transfers, and when you get to the airport. Take advantage of the airline shuttles or transport carts, especially if you are changing planes. You might also consider asking for  a wheelchair. Do what is best for you. Do not be self-conscious or concerned that you are putting people out – they provide these amenities solely to assist those who might have difficulty moving about the airport.

  • Be sure to have your most important items (medication, special braces for sleeping, etc.) in your carry-on in case your luggage is lost.

  • Wear a pair of shoes you can easily remove as you go through security. If you need to, show them a letter from your doctor stating you have RA and cannot remove your shoes. Just be aware that in this case, you might be subjected to more rigorous security tests.

  • Most newer artificial joints will not set off security alarms, but it is possible that some of the older ones may. Carry a doctor’s note stating the joints you have had replaced.

  • Take advantage of pre-boarding. Ask to be boarded first so you can be settled in your seat before the rush of people boarding the plane. Ask for an aisle or a bulkhead seat. These seats give you a chance to stretch more and move around. Be sure that you are not being given an emergency exit seat. If you are unable to help people disembark the plane, you will be asked to move from that seat.

  • Make sure to do range-of-motion exercises. Raise your arms and move your hands and fingers at least once an hour. If you have an aisle seat, stretch out your legs, rotate your ankles, and bend your knees. Stand or walk once an hour and don’t forget that your upper body - including your shoulders, hands, and wrists - can get stiff as well.

  • Hydrate during the flight. People often get sick on airplanes because they become dehydrated. As you become dehydrated, it is easier for bacteria and viruses to get through your mucus membranes.

  • Wash your hands, use Purell® hand sanitizer, or use baby wipes to prevent illness.

  • Check the Transportation Security Administration website 24 hours before boarding the flight. Things change very quickly and you want to be sure you know what you can bring in your carry-on.

Train Travel with Amtrak

Amtrak’s special services desk can be a great asset as you prepare for your trip. They may be able to arrange for you to have overnight accommodation in larger rooms and can reserve seats with more room or special swiveling seats that make it easier to get in and out.

In some ways, train travel is better than air travel for those with RA. Trains have handrails, which are helpful for holding on while in transit. Legroom on trains is better than on airplanes. You can also walk to the café car when you need to stretch.

Many trains require climbing up stairs to get into the passenger car, so arrange to have someone there to help you board and disembark. Some stations have a mechanical lift to get you on and off the train.

Amtrak will also help you coordinate your luggage pickup with your destination station by arranging for people to help you and your luggage off the train.

Trains do have refrigerators available for your medication if necessary.

They will often bring food to your seat if you request it in advance, and some train routes provide a refreshment cart.
 
Car Trips

The advantage of automobile travel is that you are in control. When you need to stop to take breaks, you have the complete freedom to do so.

Bring the right things to make your car ride comfortable. Stock the car with food and beverages in case you are hungry or need to take medication but are not up to stopping. Have a neck collar or a horseshoe pillow so you aren’t straining your neck while you rest. Bring a beaded car seat to increase you back’s comfort, or try sitting on a large garbage bag, which makes it easier for you to get out of the car.

Customize your car. Cars can be retrofitted to suit the needs of people with RA.. But if you are renting a car, make sure it is a vehicle that you can easily get in and out of. You probably do not want an SUV, which is high off the ground, or a two-door car if you are going to be riding in the back seat.

AAA is a great resource and can help you arrange an “accessible” trip. They will work with your limitations and help you find appropriate accommodations and activities.

Bus Travel

This can be a difficult way for people with RA to travel if you will be traveling for more than a couple hours. Most buses do not have lifts.

Inquire about how often the bus will stop. You may want to get off the bus and stretch, but that means going up and down stairs. Also ask how far the bus will be parked from rest stops.

One advantage of bus travel is that if you can provide a doctor’s letter saying that you need a travel companion, you can usually get two-for-one or reduced fare for the person accompanying you.

Cruises

The cruise industry is very accommodating and goes out of its way to welcome people with disabilities.
 
Cruising is one of the best ways for someone with limited mobility to travel. There are many cruises that cater to people with disabilities, and every cruise ship has some kind of medical facility and staff. Often, there are special cruise managers for people with health issues.

A major advantage of cruises is that they are self contained. Food, activities, lectures, and entertainment are all close by. You can choose not to leave the ship when it docks in a port of call and just enjoy the quiet of the ship. Furthermore, cruises provide activities of all kinds that accommodate not only your needs but also will be entertaining for the people you are traveling with.


You might want to consider some kind of travel insurance for cruises since most cruises are in international waters and your medical insurance will probably not cover health care while onboard a ship.

Before you book your cruise, know that newer ships are more disability-friendly. Choose a cabin that is near the area you want to be in. This may depend on your desire to be near an elevator or, if you are sensitive to seasickness, on a lower level toward the center of the ship.

If there is assigned seating in the dining room, ask the staff to place you close to the door so you won’t have to walk far.

Be aware that one of the major issues with cruises is having access to a handicapped bathroom. In many of the cabins, you have to step over a ledge or lip in the doorway to enter the bathroom.

Another issue with cruises is that getting on and off the ship can be difficult. Find out how many ports of call there are and how often you might be exiting the ship. Learn about the shore excursion and decide if you want to participate.

Medication Refrigeration

Bring personal identification that matches the name and address on your medication. Be sure the prescription is in its original bottle. Bring a written prescription in case you misplace your medication and need it filled when you arrive.

Carry a letter from your physician to show your medications are valid. This is especially important if you are traveling with liquid medicine or if you need to carry needles.

Bring ice packs in transit to keep medication cold until you get to security. They will probably not let you through with any kind of ice pack, so be prepared to throw them away. Once you get to the gate or onto the plane, ask for an ice pack or even a cup of ice.

Order a refrigerator for your hotel room before you arrive.

If checking out in advance of your departure, ask the concierge to arrange for storage of your medication.

Most biologics do not “spoil” unless exposed to extreme heat. You can contact the pharmaceutical company that makes your drug to see how long it will last without refrigeration.

How to Pack Medication

Have two sets of medication just in case something happens to one bag. Keep one in your carry-on and one in your checked baggage.

Keep all medication labeled and bring extra doses for your trip just in case you lose a dose or two.

Additional Helpful Hints

Get ample rest before traveling. Don’t leave packing to the last minute to ensure that you are well-rested upon your departure.

When you are arranging travel, try to use a travel agent. Ask for specifics about the amenities or arrangements you are making to be sure they will work well for you.

Don’t assume anything – research as much as you can. Fodor’s has a book specifically about traveling with disabilities which might be helpful.

Reduced fares are often available for someone who is helping you travel, but you probably will need to provide a doctor’s note. With tighter safety constraints, security will typically not let an escort past the screening area.

Time your medications before you go. That is especially important for drugs like Remicade®. Be sure to take medication properly so you are at your optimal health for your vacation.

Traveling within New York City and its suburbs

Know which subway, train, and bus stations are handicapped accessible. There are only 39 stations in New York City that have elevators. Long Island Rail Road and Metro-North Railroad have accessible stations and terminals, but some have limited access. The MTA website will show you which stations and terminals are handicapped accessible.

When boarding a train, get the attention of the conductor. For the subway, stand in the middle of the platform when boarding because the conductor is in the middle and will see you. For the LIRR and Merto-North, the conductors are at the front of the train. Hail the conductor so you can get some assistance. Do not be shy about asking for assistance when boarding a train.

The buses in Manhattan should “kneel” to help you board. However, some people have reported that not all bus drivers are receptive to lowering the bus for them.

If you have a letter from your doctor stating that you need a travel companion, that person may be able to ride for free.

You may be eligible for door-to-door paratransit services or “Access-A-Ride” in New York if you are unable to ride public transit. The MTA website has information on these services. They also have a training program to help you learn how best to board and disembark from buses and trains.

Conclusion

New resources and services are helping to make travel with chronic illness and limited mobility more accessible. With a bit of extra research and planning, you should be able to enjoy your destination – and your journey.

About the Living with RA Workshop at HSS

Summary by Sara J. Allen

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