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Preparing to travel is often a time-consuming task. When you have a medical condition like multiple sclerosis (MS), it can be even more so. One MyMSTeam member said they had stopped traveling because of all of the complications. “We gave up traveling years ago, especially airplanes. I really don’t trust them and I have too many things I need.” But your diagnosis doesn’t have to mean the end of your travels.
Whether it’s making sure medications can get through security checkpoints or checking to see if your destination is accessible for people with disabilities, many things can add frustration to travel. However, planning ahead can make travel a lot less frustrating. Here are some things you can do to make travel as stress-free as possible with MS.
Packing for a trip can take a lot out of anyone, even someone without MS, but some tips can help make travel planning a bit easier.
It can be helpful to pack a little bit at a time over a week or two. It reduces the stress of finding everything at once and makes dealing with fatigue easier. If you use a wheelchair, be sure to bring a backpack and bungee cords that can allow you to attach things to the chair while leaving your hands free. If you are renting a car and usually use disabled parking, bring a disabled placard.
If possible, get a map of the hotel and any destinations you plan to visit so you can figure out how to access them most easily. Call ahead to ask the hotel about their experience in accommodating people with disabilities and their accessibility options. One member explained, “In the U.S., hotels are required to have handicapped-accessible rooms. You just need to tell them that as part of your booking.” Also, if your medication requires refrigeration, make sure you will have a mini-fridge in your room or suite.
Get a note from your doctor or neurologist for any injectables and medications you need to carry, if needed. One MyMSTeam member mentioned that even with a note, some medications still pose a problem. “When it comes to meds, it can be an issue in countries that do not accept certain pain medications or narcotics, even if you have a doctor’s note,” they said.
If you need vaccinations for wherever you are traveling, make sure your medications won’t interfere with their effects.
Make sure you and your travel companions are on the same page. Talk about any concerns and make it clear who is responsible for what to prevent headaches on travel day. As one member shared, “I would suggest cutting down the traveling time especially — for your own health.” Discuss your travel expectations — for example, how long you’re willing to be in a plane or car.
Travel insurance can be valuable if there is a chance you may not make the trip. Travel agents can help you find insurance.
The Air Carrier Access Act prohibits discrimination based on disability in all forms of air travel. Although airlines generally do not need advance notice of a passenger with disabilities on a flight, certain items (like an electric wheelchair on a flight when the plane has 60 seats or fewer) might need 48 hours of advance notice. Check what kind of plane you will be flying on in advance if you have a wheelchair you need to use. If an airplane has 100 seats or more, the crew is required to store a folding wheelchair in a priority space in the cabin. Most planes are required to have accessible bathrooms. If you have disabilities, you can usually request early boarding to have extra time to get settled on the aircraft.
Additional tips to make flying easier include asking for a seat near the aisle or bathroom. “Request an aisle seat close to the bathrooms while in flight,” one member advised. Another agreed: “Sit in an aisle seat so you can get up and move around whenever you need to.”
Also, take steps to make your time in the airport as easy as possible. Make sure all carry-on medications are in bottles that clearly label the type and who it is prescribed for so there will be fewer delays at security check-in. Although the TSA doesn’t have a specific labeling requirement, there are different laws for prescriptions in different states, so it’s best to be prepared. “If you keep the medication in the original labeled container and have a doctor's note, that should help you overcome any questions,” one member said. See if you can enroll in the TSA PreCheck program beforehand, too. If you are accepted, you don’t need to follow the rules for removing liquids and can wear a jacket, shoes, and a belt through security.
It can be helpful to tell an airport worker about any special needs you have. One member suggested, “Ask for wheelchair assistance at the airport.” Another shared, “I called the airport ahead of time to set up assistance and they picked me up at the entrance and took me everywhere I needed to go.”
Some injectable medications can be stored at room temperature and others need to be kept cold. The National Library of Medicine can help you determine which one you have. If you do need to keep medication refrigerated, a travel cooler with an ice pack can help. You must declare all injectables and anything that is used to cool them at airport security checks. To make it simpler for you and the security officials, put them in a plastic bag inside the cooler so they can be taken in and out more easily. “Make sure it’s in original packaging with the prescription on the box,” one member advised. Another said, “I also advise keeping your medicine with you, rather than risk it getting lost in your luggage.”
Once you finally get to your destination, there are a few things you can do to make your stay more comfortable.
You might want to tell workers you’ll have regular contact with (for example, at a restaurant or hotel) about any noticeable symptoms. Explaining to them that these symptoms are not things to worry about can help ease their minds.
Find out where the nearest emergency services are and the quickest way to them, in case you experience any exacerbations, flare-ups, or worsening of your MS symptoms.
Take rest days. It can be easier to see all the sights if you come back to your hotel room and rest for a while between them. If you usually don’t use mobility aids, consider renting a scooter or a walker. That way, you can still do what you want while reducing fatigue from mobility issues.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. Members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Looking for advice on how to best travel with MS, or have some tips of your own? Comment below or start a new conversation on MyMSTeam.
Amit M. Shelat, D.O. is a fellow of the American Academy of Neurology and the American College of Physicians. Review provided by VeriMed Healthcare Network. Learn more about him here.
Annie Keller specializes in writing about medicine, medical devices, and biotech. Learn more about her here.
