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Tips on Traveling With Parkinison’s

Posted Oct 18 2013 6:07pm

Travel
Traveling can be stressful for people with Parkinson’s who travel alone, travel with a companion or spouse, or travel with friends and family. The following are some tips for bringing back some of the fun to your travel experience.

In Preparation to Travel

Being well prepared for your trip can reduce a lot of your anxiety. To help you get organized, set up a binder to keep all of your travel documents in one place. Use sheet protectors for documents that you don’t want to hole-punch. Set up dividers and tabs in the binder such as: Air, Hotel, Car Rental, Passport, Contact Persons, Physicians and Medications, and Maps.

Prepare a list of contact information of those people you are visiting at your destination, including dates and times that you are visiting, as well as their names, addresses, home and cell phones, and driving directions.

Bring your hotel confirmation information.

If you are renting a car, bring your car rental confirmation information and your automobile insurance card.

Prepare a list of the details of the activities and events during your trip e.g., dates, times and locations of the activities you have scheduled and the events you are attending.

Prepare a list of the contact information of your neurologist including name, organization, address, phone, and email.

Prepare a list of your medications with names, dosages, and timing of medications. Make sure that you have enough medication for your entire trip plus a replacement supply. Talk to your doctor and request enough medication refills to get you through the trip. Carry on all your medications in their original bottles in your carry-on luggage. Bring a small weekly pill organizer to hold the pills for a week while you are en route. If you are staying longer than a week, you can refill your pill organizer from the original bottles. Bring a pill-cutter, if needed.

If you have Deep Brain Stimulation (DBS), ask your doctor for the phone number of a DBS Therapy specialist at your travel destination in case you need some help with your DBS system.

Other Things To Do In Preparation For Traveling

Check the passport’s expiry date to make sure that your passport is current.

Know the details about your medical insurance coverage in case you should require medical care while you are traveling.

Even if you generally don’t use a wheelchair, you may want to consider getting a wheelchair to get through airports if you have tight connections and gates that seem miles apart, for sightseeing and to help prevent fatigue.

When Booking Your Flight

Try to book a non-stop, direct flight.

When you make your reservation, request preferred seating, either disability or a seat near the plane’s entrance.

Provide advance notice to your airline, travel company or travel agent if you require assistance at the airport. Often there is a designated person who coordinates travel, provides information, and answers questions ahead of time.

Consider purchasing trip cancellation insurance so that if you need to cancel, you will be covered. Review the details of your coverage under your trip cancellation insurance.

When Checking-In

Arrive at the airport well ahead of your check-in time.

Bring your medications in your carry-on luggage.

Carry-on luggage limits do not apply to medical supplies, equipment, and mobility aids carried on and/or used by a person with a disability. Mobility-related items are allowed through security checkpoints after they are cleared through screening. These include: wheelchairs, scooters, crutches, canes, walkers, orthopedic shoes, tools for wheelchair assembly and any other disability-related equipment and associated supplies.

If you require a family member or companion to accompany you through the security checkpoint, obtain a gate pass for that person at the same time you get your gate pass/boarding pass.

Screening

TSA (Transportation Safety Administration) has a program for screening people with disabilities and their equipment, mobility aids, and medical devices.

Your traveling companion may accompany you and assist you during your screening.

If you need to sit down during the screening, you should be allowed to remain in your wheelchair if you have one.

Screening For Those With DBS

For those with DBS, traveling by air gets a little more complicated.

You can go through the security line until you reach the metal detector.

Do not go through the metal detector. If you go through the metal detector, your neurostimulator device may set off the alarm and the security equipment may turn off the neurostimulator.

If they try to force you to go through the detection device or be screened by means of a security wand device, calmly and firmly insist that you need a pat-down instead.

The TSA employee will call for a male or female “assist” to provide the pat down, and will advise you where to wait.

When the pat-down person arrives, repeat to this person that you need a pat-down. If they asks you “why,” tell him or her that you have an implanted medical device. Don’t try to explain the intricacies of DBS.

Show the person your Medtronic Patient Identification Card, if necessary. It contains information about you, your device, and your doctor, plus Medtronic’s Patient Services number. This card will NOT exempt you from the screening process.

Once your carry-on items have cleared security, they will be taken by the TSA employee so that you can keep them in your view during the pat-down.

Before starting the pat-down, the TSA employee will ask if you want a personal screening or a private screening. My suggestion is to have a screening in public view in the event that anything inappropriate occurs and you might need bystanders to provide documentation.

The TSA employee will do the pat-down with his or her hands instead of a metal detection wand.

When the pat-down is finished, don’t forget to pick up your belongings including your carry-on luggage which has gone through the same screening machine as everyone else’s.

Once you’ve cleared security, use your patient controller to make sure your DBS system is still on. If it has turned off, turn it back on.

During Your Flight

Let airline employees know your needs during travel, like stowing luggage, opening beverages, and bringing water to take with your medication.

Make sure you stand up and stretch every hour or so and/or do a set of seated exercises.

On long flights, your doctor may recommend compression stockings to manage the circulation in your legs.

Bring some snacks and bottled water to enjoy during your flight.

On Your Trip

Maintain your usual medication schedule and diet, drink plenty of fluids and keep yourself hydrated with water.

If you are changing time zones, most doctors suggest that you continue to take your medications as prescribed with the same time intervals.

For those with DBS, check your neurostimulator once a day. If you suspect that it was turned off, make sure you and/or someone is able to turn on your DBS system again.

Pace yourself and balance busy days with restful breaks.

Speak up and let others know what you need. Most people are happy to help.

Bon Voyage!

 

References

“Daily Living--Travel Tips” by Medtronic at http://www.medtronic.com/patients/parkinsons-disease/living-with/daily-living/traveltips/index.htm?PC=13442c6668300

“Traveling with Parkinson’s” by Fran Squire in a Parkinson Society Ottawa publication, Volume 34, Issue 2, Summer 2011.

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