*Update November 22, 2018 *
Thank you to Diane Sherman, editor of the Dartmouth-Hitchcock Parkinson’s Newsletter. This handy tip is from their November 16, 2018 issue:
The European Parkinson’s Disease Association (EPDA) has a new “My Parkinson’s Passport” that will help you to
• communicate about Parkinson’s
• list your personal info and emergency contacts,
• list all your essential medical info (including whether you use apomorphine rescue injection or have Deep Brain Stimulation or Duopa Pump), and
• inform which medications should NOT be given to someone with PD!
It might be handy to have this information in your pocket, purse or backpack whether or not you are traveling far from home!
Click here to download and print EPDA’s My Parkinson’s Passport.
*Update July 23, 2018 *
In July 2017 at our cafes we talked about traveling and shared travel tips. It was so much fun and we got so many great ideas that we did it again in 2018. I’ve combined both years worth of travel tips so as to organize them better. I hope you find some fun things to do below. Words and phrases in light green are links to the websites.
Wheelchairtravel.org – is written by a passionate traveler who is a triple amputee
Travelonthelevel.blogspot.com tracks accessible travel destinations.
Accessible Journeys (disabilitytravel.com) is a tour operator for people who use wheelchairs.
Sage Traveling (sagetraveling.com) is an accessible-tour operator for European travel for people with mobility issues.
Federal Aviation Administration (faa.gov) provides a summary of rights for people with disabilities navigating airports and flying.
National Park Service (nps.gov) offers an Access Pass, which provides discounts for those with permanent disabilities.
Washington.org provides details on accessible destinations in Washington, D.C.
U.S. State Department (travel.state.gov) provides a roundup of disability access in foreign countries.
*Update 7.26.18* From Insight Memory Care Center (our Cafe Fairfax hosts!): 5 Tips for Caregivers – Tips for (Successful!) Travel
*Update 7.1.18* From the Davis Phinney website: How to Travel (with greater ease) with Parkinson’s.
– When planning your trip, find out as much as you can in advance about your mode of transportation as well as your accommodation.
– Also, contact your accommodation provider and tell them what you need. e.g. bed needs to be a certain height, not against the wall, etc. They may be able to offer assistance in ways that you haven’t thought of.
– Use a checklist to help you plan and pack so you don’t forget things
– Pace yourself! Schedule times to rest and recover.
– Take your own prescription antibiotics just in case.
– Take your own folding seat for the shower
– some have an add-on to make the seat higher as well as the frame to help you stand up safely.
– Corkcicle came highly recommended as a way to keep drinks icy cold for several hours. Triple insulated and available from Amazon.
– Cell phones: May need to be unlocked. Check your plan to see if you can use your phone overseas. Some airports rent phones.
– Another alternative is Google Voice. The phone number is free and it can be used through Wi-Fi when cell phone reception is poor or nonexistent.
– If you want to dive and you live with PD, get a letter from your doctor. It will help the dive operators to feel more confident about you diving with them.
– It doesn’t hurt to ask . . . For instance when faced with long lines at security, you may be able to get to the front of the line quicker if you explain your predicament. If you forget to buy water before boarding and you need some for your meds, just ask the attendant.
– Vests with lots of pockets can come in handy. Check out SCOTTeVEST or Magellan travel vest.
– Pack layers in case the weather is different than what you were expecting.
– Google have a translation app. When someone speaks into it, it will translate and show the results on the app. Another good thing about it is that it can be used online. Language books helpful, too.
– After your vacation, use Shutterfly to create a book of memories with your photos.
– Make it stand out with a colorful strap (also may help luggage from opening up and spilling everything) inflated balloon. Paint initials with nail polish on the bottom of your case.
– eBags.com: app to track your luggage. Not necessarily 100% reliable
– Use TSA approved travel locks
– Porters – airport, train. Worth the tip to help negotiate airport/station, get your luggage to the right place, board early.
– Pay the extra for baggage carts.
– To help find your luggage if lost, take a photo of it. Also, make a list of what is in your luggage and keep it separately in case it is lost.
– Damaged luggage to the point it is no longer useful – some airlines might give you new luggage.
– Delta have a 20 minute guarantee for SkyMiles members that your baggage will arrive at the carousel within 20 minutes. If not, members receive points.
Cruise – they sure were popular!
– When starting a cruise in another city, travel there the day before and stay in a nearby hotel and ask for their parking cruise rate. You can leave the car at the hotel while they take you to and from your ship by shuttle, and start your cruise relaxed.
– Recommended cruise lines: Royal Caribbean, Carnival, Celebrity and Holland American (fewer kids, more adults). Smaller ships got the thumbs up. Staff are generally very helpful.
– Call in advance and let them know your accessibility issues.
– You can rent wheelchairs, walkers and scooters.
– There are a limited number of handicapped rooms
– Ask for room close to the dining room
– Shore excursions can cater to you if you need extra assistance/accessibility.
– Don’t go during spring break (self-explanatory).
– Use www.SeatGuru.com to choose your seat. It provides information on why some seats are a better choice than others.
– Toilets on plane are small.
– Arrange for use of wheelchair and/or transportation between gates at airports. (Charlotte NC airport is larger than you’d think.) Using a wheelchair cuts down on stress, and is less tiring. Volunteers will push. When you get to the gate, double check that a wheelchair will be waiting at your destination or next stop.
– DBS and International travel – Medtronic has a card explaining equipment in multiple languages.
– Boarding a plane – let them know at the gate that you need extra time to board and when you do, check the layout – bathrooms, exits, etc.
– TSA PreCheck – if you have TSA PreCheck remember to add it to your flyer profile
– In July 2018 Kiplinger magazine on page 13 is an article entitled “Flight Delays – Expect more scrutiny from TSA.”
– Keep feet moving when on a plane. Practice your dance steps!
– Use family bathrooms in airports.
– AutoTrain (Lorton, VA – Sanford, FL) Get there early and grab a bite at the shopping center nearby.
– There are handicap accessible rooms as well as bathrooms available on the lower deck of the sleeper cars, and family rooms are large, too. Other rooms can be somewhat cramped. Meals can be brought to your room.
– Amtrak – reserve seating in advance on Acela but only from point of origination
– Pack a picnic basket with car food. There are lots of reasons for when this comes in handy such as dietary restrictions, when restaurants aren’t open late at night, small town with limited options, public holidays.
– Overnight ferry travel – get a cabin so you can sleep
– Contact the hotel when booking and confirm that they can accommodate your needs.
– Be specific. For instance, if you asked about their handicap accessible bathrooms, what they have and what you need may be two different things
such as the hotel offers a shower in a bathtub with handrails, when what you need is a walk-in shower.
– Ask for a room close to where you parked your car
– Rent wheelchairs
– Take your own: night light, folding bath bench, toilet frame, handrails (If taking your own with suction cups, check them out at home first), rubber mats or decals for bottom of bathtub or shower floor
– Don’t use towel rails as handrails – they are not strong enough.
– People in a hotel who aren’t porters, like maintenance people or front desk will help you with your luggage, too.
A couple of handy websites/apps:
Ride Guru Compare various rideshare companies, taxis, limousines, etc. You can get accurate estimates and compare fares, and find answers to questions about how rideshares and ride hails work.
SpotHero & SpotHero in Washington D.C. Find available parking, how late the garage is open, how much it will cost, and reserve your spot!
The Kennedy Center also offers prepaid parking.
Where to go? What to see?
Suggestions for where to go for a weekend getaway? (if you live in the DC area)
– Road scholar – www.roadscholar.org
– Residence Inn and Springhill Suites in Virginia Beach have the same floor plans, including accessible ground floor rooms with a large terrace
– Inn at Leola Village, Lancaster, PA – Chesapeake Hyatt in Cambridge, MD
– Longwood Gardens, Kennett Square, PA
– ADA accessible vacation homes available on the Outer Banks – contact local real estate agents.
– Luray Caverns Falling Water, SW Pennsylvania. Designed by Frank Lloyd Wright, this house is built over a waterfall and is a National Historic Landmark.
– Gettysburg town.
– Inn at Little Washington – pricey but worth the experience
– Fredericksburg, VA – Battlefield (below), Gari Melcher’s home and museum, James Monroe Museum & Memorial Library
Things to do in DC:
President Lincoln’s Summer Cottage at the Soldier’s Home
Library of Congress
National Railway Historical Society – DC Chapter Travel on their Pullman Car – Dover Harbor – restored to its authentic 1930s appearance
Western Maryland Scenic Railroad (Hagerstown, MD)
Great Falls National Park
DC Circulator – The Circulator is public transportation that will take you to the District’s main attractions for $1.00 or less. Yep, you read that right! There are several routes that will take you to places like Georgetown, the zoo, and Dupont Circle, as well as one that travels around the Mall. If you’re planning to see the sights around the Mall including around Tidal Basin, keep in mind that it travels counter-clockwise. There are maps and schedules and everything you need to know on their website.
Inspired by “Hamilton” – From catching the show at the Kennedy Center to a guided tour at the National Gallery of Art, check out 13 different things to do in DC.
Hillwood Estate, Museum and Garden Home of Marjorie Post. Tip! Good idea to call ahead
Museums in and around DC:
Museums on Us If you have a Bank of America credit card, you have free access to museums such as the Newseum on the first weekend of the month. National Museum of American Jewish Military History
National Gallery of Art – also offers free jazz concerts
United States Army Women’s Museum
Women In Military Service For America Memorial (Women’s Memorial)
National Postal Museum
Museum of the Bible
DEA museum – across from Pentagon City Mall
Antietam Battlefield (Near Sharpsburg, MD)
Fredericksburg Battlefield – Tip! Because it’s in the city, you may want to time your visit with peak hour traffic in mind.
Gettysburg National Military Park – Very moving in winter when it’s quiet – not a lot of visitors
Things to do in Alexandria:
Mt Vernon (George Washington’s estate)
Reenactments in Alexandria: Fort Ward, also at Mt. Vernon
– George Washington Masonic National Memorial
– Alexandria Historical Society
Things to do in Northern Virginia:
Picnic at Great Falls National Park – see if you can find a Weather Stone 🙂
Not part of our discussions, but here are links provided by other Parkinson foundations. They have lots of great ideas!