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Sunday, July 9, 2017

Transportation and Travel With Parkinson’s

By Sara Riggare, Ph.D. Candidate, and Rebecca Gilbert, M.D., Ph.D.

“People with Parkinson’s may take several medications and it’s critical that people take those medications on time. But during travel, most of us change our normal routine, making it easy to get off track. Preparing to stay on your medication schedule will improve your trip.“

If you have Parkinson’s disease (PD) and love to travel, can you? Yes! Many people with Parkinson’s continue to enjoy travel, and the opportunities it brings to explore new places and visit loved ones. Others may need to travel for business or may need to move about their communities. The secret to a successful trip is to plan ahead. Together, we have put together these tips to help you feel confident about traveling. We draw from our respective experiences as a person with Parkinson’s (Sara) and a neurologist specializing in Parkinson’s (Rebecca). Remember, PD symptoms vary from person to person and evolve, so use the information that makes sense for you.
Local Travel
Whether you are visiting a new community or want to get around your own city or town without a car, research the local public transportation before you set out to take a bus or subway. Some cities have excellent, accessible public transportation, but many do not. Look at maps to find stops labeled as wheelchair accessible.
Some local governments provide wheelchair-accessible, door-to-door public transportation for people who qualify. This is offered at the same price as mass transit. New York City, for example, operates Access-A-Ride for people with disabilities. This is a great option, but when using services like this, remember to build in extra time for pick-up if you need to be somewhere at a certain time.
If you need assistance traveling to doctor’s appointments, consider asking friends and family. Find out whether organizations such as Friends in Service Helping (FISH) or Disabled American Veterans, which will take people to appointments at Veteran’s Administration facilities, are available to you (look online at

Long-Distance Travel
If there is one rule about long-distance travel, it is to expect the unexpected. Sara was caught off guard in 2010 when she and her family flew from their home in Sweden to London. The trip coincided with a volcanic eruption in Iceland, grounding air traffic in Northern Europe indefinitely. Once in London, Sara did not know how long they would have to stay or whether her PD medications would last. Fortunately, everything worked out and she learned a lot about preparing for travel. Consider these tips for minimizing travel stress.
Before You Go

There are things you can do before you even book your trip, to make travel more enjoyable. For example, if possible, travel at less hectic times of year. You may want to avoid travel around major holidays, and during the last two weeks in August. Also, think about which times of day you feel your best. Choose flights during those times. If direct flights are not possible, choose connecting flights with plenty of time in between to minimize the stress of rushing from one plane to the next. Lastly, prep for medical care in advance. Let your doctor know that you are traveling. Identify the medical centers and pharmacies in the area of your destination. Hopefully you will never need them, but if you do, you will already have the information you need.
At the Airport

Even if you don’t normally use one, ask to use a wheelchair. This will make everything easier. When you arrive at your gate, ask if you can board early to avoid navigating crowds or standing for long periods of time.
What about security? There are a few steps that you can take to ensure a smooth experience. First, print and fill out a Disability Notification Card from the Transportation Security Administration (TSA) website at If you are carrying this card, official TSA policy says that you do not have to remove your shoes and can ask to have a portion of the security check done seated. The card also provides a phone number you can call 72 hours in advance to request support when at the airport. To be on the safe side, ask your doctor to write a brief letter to corroborate the information on the notification card.
It’s also a good idea to apply for the TSA Pre√® program. As part of this program you do not need to remove shoes, laptops, liquids, belts or light jackets during screening. Note: there is an $85 fee, which covers you for five years before you have to renew.
Keep in mind that anyone with cognitive difficulties is entitled to accommodations. First, inform a security officer of the difficulty. Travelers with cognitive difficulties will be screened without separating them from their travel companion. In addition, a travel companion can advise TSA officers as to the best way to conduct the screening. If necessary, screening can be done in private.
If you have undergone deep brain stimulation (DBS) surgery for Parkinson’s, take extra care. Pack the DBS identification card provided by the device manufacturer and a letter from your doctor about DBS. Instead of using the security gate, ask for a hand search. If you must walk through, do so at a normal pace through the center of the machine. If a security wand is used, ask the officer to avoid placing it directly over the stimulator. Have your remote control with you in case the stimulator turns off.
Managing Medications

People with Parkinson’s may take several medications and it’s critical that people take those medications on time. But during travel, most of us change our normal routine, making it easy to get off track. Preparing to stay on your medication schedule will improve your trip. One tip is to avoid making any changes to your medication regimen within two weeks of departure. If your doctor recommends changes, ask if they can wait until you return. Second, prepare for contingency. Pack three sets of medications in three different bags. If you get stuck, or stay longer than expected, you have plenty of back-up.
Special Tips: Adjusting Medications Across Time Zones
When you cross several time zones during a flight, you will “gain” or “lose” time compared to the local clock time of your destination. The goal is to maintain the interval at which you take medications, and also be able to take them at your usual clock-time when you land in a new time zone. When Sara flew west from New York, NY, to Portland, OR, for the 4th World Parkinson Congress last year, she took an extra dose of PD medication during the trip to compensate for the gained time. On the return flight, she skipped a dose. If you are crossing time zones, ask your doctor for help plotting out a medication schedule. Also ask your doctor about taking melatonin. If you think you might use this sleep aid when you arrive in a new time zone, try it out a couple of weeks before your trip, so you know in advance how it affects you.
Enjoy Your Trip
What’s next? Upon arrival, build in time to rest and adjust to your new surroundings! By preparing and understanding travel challenges, you will have made your trip easier. Of course it isn’t possible to anticipate every situation, but preparation will minimize stress. Then you, and your loved ones, can feel confident about traveling and enjoy the experience. Bon voyage!

Sara Riggare is a doctoral candidate at Karolinska Institute, Sweden, and Dr. Gilbert is Clinical Associate Professor of Neurology, The Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders at NYU Langone Medical Center, a Parkinson’s Foundation Center of Excellence.

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