For the average person, traveling is a minor frustration. Security lines, delays, crowded airports and cramped and long lines at snack shops and restaurants are par for the course. However, if you’re living with Parkinson’s, those things aren’t just frustrations, they can be so troublesome and aggravating to deal with that you choose to stay at home.
That’s why we decided to reach out to our Davis Phinney Foundation Ambassadors, many of whom are avid travelers, to get their best tips for traveling with Parkinson’s. Armed with this information, when you get out and about this summer, we hope you’ll do so with greater ease.
Managing medications topped nearly everyone’s list. Here are a few suggestions our expert travelers offered.
Bring more than you need. (And always know how to get more in a pinch.) When you’re headed out for a long trip, it’s easy to miscalculate; so, bring extra.
Put your medications in more than one location. This way if something happens with your luggage or you forget a backpack somewhere, you’re covered. Ideally, keep them in your carry-on bags or on you if possible.
Set timers or alarms on your phone so you’re always prompted to take them, even if you’re caught up in another activity.
If you’re going to be in multiple time zones, plan a consistent schedule for taking your medication. Your body doesn’t care that you started in Boston and ended up in LA – it wants Sinemet every three hours.
Sometimes travel days will stretch on and on, far beyond a typical day at home. If your awake time demands it, take an extra dose of something and make sure you account for those extra doses when packing your meds.
If you’re traveling with a companion or care partner, have them carry an extra dose of your medications.
Always carry a complete list of medications with you. And be ready to show them if asked.
Make sure at least one set of your prescriptions are in Rx bottles with labels. If someone in authority questions the contents of your pill bags or bottles and you can’t prove what the medication is, they can take them if they must.
If you have any liquid medications (e.g., the gel form of carbidopa/levodopa for the Duopa pump that’s approved in the US), you’ll need a letter from your doctor. Although you’re allowed to travel with medications greater than the three-ounce limit specified by the Transportation Safety Administration, those medications will be subject to additional scrutiny, and you’ll need the documentation from your doctor as part of that process. Be sure to keep these medications with you in your carry on. Do not put them in your checked luggage.
Consider traveling by train rather than getting trapped in those tiny airplane seats. Trains have plenty of legroom, there’s no TSA and you get an amazing view. In addition, train staff and riders are very friendly and usually more than willing to help out. Just be careful if you decide to walk around while the train is moving.
When buying plane, train or bus tickets, be sure to allow enough time between legs if you have to have a layover so you have the time you need—and more—to get to your next gate.
Travel when you’re at your best. For example, if you feel best in the morning because that’s when your medications offer you the best relief from symptoms, consider flying or traveling at that time.
Make a list of everything you could possibly need for your trip and save it. You might have different lists for bike rides, road trips, weekend getaways, international trips, work trips and long-term travel. Update your lists on your computer each time you travel so they’re ready to print out when you prepare for your next adventure.
Check the weather! If you need to pack a few days before you leave, and you pack for the current weather report, you could get stuck with the wrong clothes. Be sure to check again the day before you leave since weather reports change quickly, and you may need to adjust what you pack. Many people living with Parkinson’s don’t do that well in the heat or in the cold. Not having the correct clothing can be a real problem.
Put all of your paperwork in an easy to access location. This might be in the top pocket or your backpack or maybe the pocket of your pants or jacket.
Consider including in your paperwork an emergency contact list with information about your neurologist, primary care physician and other healthcare providers as well as the names and contact information of family members or other people who should be contacted in case of emergency.
If you tend to run late, avoid stress by getting to the airport extra early. Everything takes longer than you expect, so think through the steps you’ll need to take for airport security, airline boarding, baggage handling, lines at the bathroom, snack shopping, etc.
If you’re going to be out of town for a while, take a quick picture of where you parked or make a note in your phone in case you forget exactly where you left your car when you return.
Read up on flying with a disability so you know what’s available to you.
Carry a cane or a walking stick, even if you think you don’t need it. Stress often makes Parkinson’s symptoms worse, and travel is stressful. Even if you don’t need it, it’s a warning sign to others to not crowd you or run over you in the terminal or on the street.
Arrange for a wheelchair to get through the airport. This can help a lot in crowds or in unfamiliar places.
If you need to use a handicap bathroom, use them when you see them.
Take advantage of TSA Pre✓® and Clear.
If you need help, ask for it. If help is offered, take it. This includes having someone carry your bags, taking advantage of extra time allowed for boarding, having someone get food and bringing it to you, etc.
Take a disposable plastic grocery bag with you so you can open it up and sit on it on the plane. When you want to get out of your chair, the plastic reduces friction which makes it much easier to get out of your chair.
Practice getting in and out of your airplane seat (or any seat) before you go. One of our Ambassadors Amy Carlson made this great video to show you how to do it with greater ease.
Food & Drink
Have your food items at the ready since you need to separate them when going through security.
Fill your water bottle after security and between flights.
Bring more snacks than you think you’ll need on the plane in case you get stuck, delayed and re-routed and suddenly your two-hour flight turns into a six hour one.
Remember that communication is on the person with Parkinson’s. As Kathleen Kiddo says, “Nobody can read our cue cards so it’s our job to let them know what’s up.”
Consider wearing or traveling with a card that says something like, “I’ve got Parkinson’s and I need a bit more time and space. Thank you.”
Some people with Parkinson’s carry this card.
Or this card from the Parkinson’s Foundation.
Sleep and Rest
Slow down and don’t overschedule your days. Choose the activities that are most important to you rather than trying to rush through to hit every possible spot. You will have the most enjoyable time if you learn how to conserve energy so that you have it when it matters most.
Try to time your travel so that you have plenty of time to rest once you arrive at your destination. For example, if you’re traveling to Europe, consider going a day early so you have time to get your body clock adjusted.
If you travel somewhere that has a significant time change, take a one to two-hour nap when you arrive. Go out for dinner and then go to bed at what would be a normal time for the part of the world you’re in. Immediately try to assimilate into the routine of your new environment.
Bring a sleep mask and earplugs. Many people with Parkinson’s have difficulty sleeping. Keeping a sleep mask and a pair of soft foam earplugs nearby can help you get some rest when you’re traveling. You might also consider bringing an inflatable neck pillow for additional comfort.
Pack light and feel secure knowing that, unless you’re traveling to a remote area, you’ll be able to pick up anything you need once you reach your destination.
Travel in comfortable clothing that’s easy to get on and off in bathrooms. Slip-on shoes or sandals, shoes that don’t require you to lean over to take them off, are great for airports. And keep an extra pair of socks in your carry on for cold planes.
Wear knee-high compression socks for road trips and air travel. They keep the blood flowing and reduce swelling.
Bring a change of clothes in your carry on bag just in case.
Consider bringing a jump rope. It travels well and it offers a great workout. It’s an aerobic and motor challenge, a great exercise for travel.
Whether in a car or on a plane or train, take time to get up and stretch every 30-45 minutes.
As much as possible, try to continue to exercise and do the things that are part of your daily routine for living well while you’re on the road. It can be a challenge when you’re in a different place and don’t have access to the same routine or equipment, but veering too far off schedule can create problems both when you’re traveling and when you arrive home. Adjust as needed, but continue to do the activities that make you feel well.
Use a label maker to put your name and cell number on loose objects, like canes.
If you don’t have a handicap placard, get one.
While you’re exploring new areas, consider checking out the local Parkinson’s offerings. Does the place you’re visiting offer something in the way of support for people living with Parkinson’s that you don’t have where you live? If not, do they need your skills? Could you bring something to share with the community you’re visiting?
Don’t be afraid of letting your travel companion(s) know that you’re too tired to do certain activities and you just need time to rest.
If you have DBS, bring the Medtronic device wallet card (or whatever company made yours). You may be asked for it. It’s best to not try and explain DBS to security people. Just say you have a “medical device” or even just say you have a pacemaker as that’s something they hear all the time. Remember, you can’t go through the old style security check machines or let them use wands to check you. Be prepared for a pat down.
Pay for luxuries and conveniences while traveling if you can. They’re designed to make your life easier and if you ever need that, it’s when you’re traveling.
If at all possible, travel with others who get you so well that they know when you need help and when to back off. They know when you need to rest and when you’re ready to go. And they, more than anything, can gracefully manage the unpredictability of Parkinson’s and not let it get in the way of a fabulous trip.
Maintain a sense of humor. Travel is difficult even under the easiest of circumstances. When something goes wrong, and it almost always does, the way you handle it will have a big impact on your physical and emotional well-being. Eventually, you’ll get where you need to go; so, in the meantime, have a good laugh about it.
Finally, while there’s a lot that happens when you travel that you can’t control, you can control your experience. Don’t let Parkinson’s stop you from traveling. As Jill Ater says, “Most people in the word are incredibly understanding and patient. If you like to travel, then it’s part of your living fully with Parkinson’s.”
And Remember, You Have Rights!
Airline Passengers with Disabilities Bill of Rights – In July 2022, the US Department of Transportation announced the official adoption of a new set of disability policy priorities, including a bill of rights for airline passengers with disabilities. The Airline Passengers with Disabilities Bill of Rights summarizes the fundamental rights of disabled passengers on flights in accordance with the Air Carrier Access Act. This document outlines disabled passengers’ rights to be treated with respect, to accessible airport and airplane facilities, and to assistance at airports and on aircraft.
Thank you to the following Davis Phinney Foundation Ambassadors and friends of the Foundation for sharing their travel tips with us: Carl Ames, Edie Anderson, Jill Ater, Amy Carlson, Cidney Donahoo, Steve Hovey, Kathleen Kiddo, Corey King, Lily Reedy and Rich Wildau.
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