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Parkinson’s Disease Foundation
PD ExpertBriefing:Getting Around: Transportation and Travel with PD
Led By: Sara Riggare, person living with Parkinson's, Ph.D. CandidateKarolinska Institutet, Sweden
&
Rebecca Gilbert, M.D., Ph.D.Clinical Associate Professor of Neurology, The Marlene and Paolo Fresco
Institute for Parkinson's and Movement Disorders at NYU Langone
This session was held on: Tuesday, September 13, 2016 at 1:00 PM ET.
If you have any questions,please contact: Valerie Holt at [email protected] or call(212) 923-4700
Introduction
Robin A. Elliott, CEOParkinson’s Disease Foundation
2
Getting Around: Transportation and Travel
with PD
Rebecca Gilbert, M.D., Ph.D.
Sara Riggare, M.Sc.
Learning Objectives
• This session aims to:
– Increase the participants’ understanding of someimportant challenges related to traveling with PD
– Provide some useful tips and tricks
– Increase the confidence of people with Parkinson’s(and loved ones) for traveling
Who Are We?
• Sara Riggare, M.Sc., Ph.D. Candidate, Stockholm, Sweden
• Living with PD
Photo
: C
hristo
pher
Kern
Sara
Traveling with PD
Traveling with PD: London in April 2010
Traveling with PD: Crossing multiple time zones
Who Are We?
• Rebecca Gilbert, M.D., Ph.D.
• Parkinson’s doctor in New York City
Local Travel• Some cities have excellent, accessible public
transportation, but many areas do not
• If you have trouble navigating your community by
walking or using the available public transportation, look into the following options:
– Local government-funded accessibility transportation – door to door transportation for the same price as public transportation for those who qualify
– FISH – Friends in Service Helping – an all-volunteer organization that operates in various communities across the United States and brings people to doctor’s appointments
– Disabled American Veterans will take people to appointments at the VA (www.dav.org/NeedaRide)
Long Distance Travel:Basic rules
• Plan, plan, plan
• Consider traveling at less hectic times of year if possible (that is, avoiding travel before major holidays, last two weeks in August, etc.)
• Choose flights during times of day when you tend to feel your best
• Let you doctor know that you are traveling
• If direct flights are not possible, choose connecting flights with plenty of time in between to minimize rushing from one plane to the next
• When you know where you are going, identify the medical centers and pharmacies in the area
Resources
• Barrier-Free Travel: A Nuts and Bolts Guide for Wheelers and Slow Walkers. Third Edition by Candy Harrington. Available on Amazon
• The same author also wrote three other books covering specific destinations: Grand Canyon, Olympic and Mount Rainier National Parks, Utah National Parks
Navigating Airport & Transportation Security Administration (TSA)
• Print out a TSA notification card and fill it out
– www.tsa.gov/sites/default/files/disability_notification_card_508.pdf
Navigating Airport & TSA: Before
Navigating Airport & TSA: Before
• Have your doctor write a brief letter about your condition to corroborate the notification card
• This is especially essential if you have DBS
• Even better! Apply for TSA Pre✓® program at www.tsa.gov/precheck for an easier trip through security. As part of this program you do not need to remove shoes, laptops, liquids, belts, or light jackets during the screening process. Note: there is an $85 fee, which covers you for five years.
Navigating Airport & TSA: During
• Ask to use a wheelchair even if you do not normally use one. Airports are very stressful and this will make everything, including security, much easier
• Official TSA policy is that if you have a disability, you do not have to remove your shoes at security and can ask to have a portion of the security check done seated
Navigating Airport & TSA: During
• If you have DBS:
– Carry the DBS identification card provided by the manufacturer in addition to the letter from your doctor
– Ask for hand search
– If a security wand is used, ask if the officer can avoid placing it directly over the stimulator
– If you do walk through the security machine, walk at a normal pace, through the center of the machine
– Have your remote control with you in case your stimulator turns off
Navigating Airport & TSA: During
• Official TSA policy allows for special accommodations for people with cognitive difficulties
– Inform security of the cognitive difficulty
– Travelers with cognitive difficulties will be screened without separating them from their travel companion
– Travel companion can advise TSA officers as to the best way to conduct the screening
– If necessary, screening can be done in private
For more information
https://www.tsa.gov/travel/special-procedures
Navigating Airport & TSA: During
Most airlines allow passengers who need extra time boarding to board early. Ask at the gate if you can have extra time to board. Allow more time than you think you will need to get to your destinations to reduce time pressures and stress.
Navigating Airport & TSA:After
You made it! Congratulations!
Medications: Before
• Do not agree to medication changes within two weeks of travel. Wait until you get back
• Pack at least three sets of medications in three different bags
• Make sure that you have at least one set of medication in your carry-on bag
• If traveling within the US, identify a pharmacy close to where you will be. Your doctor will be able to e-prescribe your meds there, if necessary
Medications: During
• Inform security that you have medications with you
• Make sure that the medications packed in your hand luggage are in their correctly labeled bottles
• Medications in pill/solid form may be opened during security checks
Medications: During
• Liquid medications are exempt from the normal liquid volume limit of 100 ml
• You are not required to place liquid medication in a plastic see-through bag
• Liquid medication may be opened during screening
• If you do not want liquid medications to be opened, tell the TSA and they will screen in other ways
Medications: During
One strategy of how to adjust medications while traveling across time zones…
Traveling WestNYC Portland
You will gain time. Take one extra dose of medication to cover you
• Example:
– Sinemet 25/100 1 tab at 8-12-4-8
• Flight is at 8:00 AM EST Landing at 11:00 AM PST
• Take medication at 8:00 AM and 12:00 PM EST and then at 12:00 PM-4:00 PM- 8:00 PM PST
Traveling EastPortland NYC
You will lose time. Skip one dose of medication and then resume as normal
• Example:
– Sinemet 25/100 1 tab at 8-12-4-8
• Flight 8:00 AM PST time Landing at 4:30 PM EST
• Take medication at 8:00 AM and 12:00 PM PST then at 8:00 PM EST
Medications: After
• Despite jetlag, try to keep to the correct medication schedule of the new time zone
• Consider melatonin to help reduce jetlag. Take before you want to go to sleep in the new time zone. Do NOT take melatonin for the first time on your trip. Try out your response to it before the trip
Ph
oto
: C
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ph
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Ke
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Traveling with PD: WPC in Portland September 2016
Rebecca and Sara’s Top Tips for Traveling with PD• Before:
Three full sets in different bags,one set in carry-on
Rebecca and Sara’s Top Tips for Traveling with PD
• During:
Rebecca and Sara’s Top Tips for Traveling with PD
• After:
Thank You!
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“I have always enjoyed photography, but before I retired, I was usually too busy to take a camera on my extensive travels. After I was diagnosed with Parkinson’s in 2009, I found photography to be a wonderful distraction. I just have to look
out my window for inspiration.”
Hmong Women Vietnam, Patricia DaviesPDF Creativity and Parkinson’s Project
Questions and Discussion
37
Resources from PDF
38
Parkinson’s HelpLine •Available at (800) 457-6676 or [email protected]•Monday through Friday•9:00 AM – 5:00 PM ET
Fact Sheets•Traveling with
PD•Making a
Move with PD
Online Seminars•Driving and
Parkinson's: Balancing Independence and Safety
