Written by: Dr. Caitlin A. Bender, OTR/L
For most people, traveling can bring at least a few minor frustrations; planning, security lines, crowds, and delays are to be expected. For someone with Parkinson’s Disease though, these aren’t just minor frustrations, they can be daunting barriers. With proper preparation though travel can still be possible, so here are some tips and tricks to ease worries and ensure you are ready for a fun packed trip. Buckle up!
OT Tips and Tricks
Planning:
At least 4 weeks prior to your trip, schedule an appointment with your physician and neurologist regarding the outline or your trip. They can discuss any potential precautions, medication management with time changes, referrals to PT/OT for assistive devices prior to travel, or referrals in your destination city in case something should come up on your trip.
Check ahead with any health or travel insurance to make sure you’re covered in case of emergencies.
Prepare your Aware and Care Kit to ensure you are provided proper care in case of emergencies. (We provide Aware and Care Kits if you need one).
Write your name and contact information on all assistive devices.
Consider how you will travel: direct flight vs non-direct, cruise, train, car. Each one will have their own pros and cons specific to you, however many people with Parkinson’s Disease report preferring traveling by train.
If you have a DBS and are flying, then plan to bring your DBS card and discuss with TSA regarding how you have a pacemaker-like medical device so you can obtain a pat-down screening.
Plan travel times during “on-times” if possible. This will reduce freezing episodes or gait difficulties while navigating long stretches.
Call hotels ahead of time to ask about accessible rooms: is the shower walk-in, do they have grab bars, are the rooms close to the elevator?
Plan reservations at restaurants that are easy to navigate and with meals that are high in fiber. Constipation can worsen with travel, and constipation is a common symptom of Parkinson’s Disease.
If possible, plan traveling with someone who is experienced with your Parkinson’s Disease journey. They can help with communicating to staff, stow heavier items, and make sure that you feel safe and comfortable during your trip.
Plan to give yourself 1-2 hour rest break upon arrival to assimilate to time zones quicker.
Plan to see fewer sites and enjoy them more! By giving yourself more time for each activity you can save energy and reduce stressful transitions.
Medication management:
Keep all medications in their original container with the label containing the doctor's name/number, generic and brand name of medication, frequency and dosage.
Keep medications on your person while traveling in case luggage gets lost or delayed.
Refrain from adjusting your medication time with changes in the time zone. Instead, maintain your same dosing schedule when traveling, especially on long train or airline flights, and use an alarm to remind you when to dose.
Store light snacks and water for taking medications. Take a seat if possible and ensure good breathing practices prior to taking medications to reduce aspiration.
Packing:
Start with your essentials and everything else you can probably get in your destination city if you do happen to forget something. Keep a checklist of must have items and a printed itinerary to reduce stress.
Medication
Identification stating that you have Parkinson’s disease
Transportation tickets
Government ID & Passports
Medical Insurance Card
Cash (determine a set amount for your trip)
Credit cards (don’t bring all your cards, just one or two to get you by)
Assistive devices (foldable canes, reacher, button hook, etc.)
Communication device and chargers (phone, hearing aids, etc.)
Aware and Care Kit
Pack light and versatile clothing using the rolling method instead of folding when packing. It can reduce wrinkles and save time.
Getting around:
Keep your load light so you have less items to manage, and use a rolling carry-on to save energy.
Carry a cane or walking stick, even if you think you don’t need it. Stress often makes Parkinson’s symptoms worsen, and travel is stressful.
During travel, try wearing elastic band pants that are easy to get on and off when using the restroom, and elastic shoelaces that won’t come untied and be stepped on when in large crowds. Adult Depends can be used to help with urinary frequency while traveling to reduce trips to the restroom.
Try wearing knee-high compression socks for car and air travel to promote blood flow and reduce swelling.
Take a disposable plastic grocery bag with you so you can sit on it during travel. Plastic reduces friction which makes it much easier to get out of your chair.
Accommodations:
Train platforms and airport terminals are often large, long, and incredibly busy. Even if you don’t use one regularly, request a wheelchair or electric cart to help you move around in these spaces. You can book and reserve them in advance.
Notify the boarding agent that you have Parkinson’s. They may board you and assist you to your seat earlier than everyone else.
Some travel options allow you to choose your seat. Pick one with the most legroom but never an emergency exit, as they don’t recline and require you to perform extra duties in the event of an emergency. Choose an aisle seat closest to the bathroom.
Exercise:
Rigidity is a common symptom of Parkinson’s Disease and more likely to become problematic the longer you are seated. If possible, try simple seated exercises to reduce rigidity.
Ankle pumps
Forward heel taps
High knee march
Overhead reach
Hand pumps
Neck rolls
If feasible, try to stand every 30 minutes and take a short walking break. Be mindful of tight aisles and tripping hazards.
During your travels, try to keep up your exercise schedule. This will help to reduce your symptoms during the trip, and keep your body ready for when you jump back into your typical day to day routine. www.bridgesforparkinsons.com has short videos for you to do that address rigidity!
Try bringing a jump rope for portable and lightweight aerobic activities, or try a virtual tai-chi routine on the www.bridgesforparkinsons.com site.
The APPDA also has a Be Active & Beyond exercise guide that can help people exercise on the go with a daily exercise program, complete with step-by-step instructions and images for clarity.
References
Davis Phinney Foundation For Parkinson's. (2019). Every Victory Counts Manual.
Parkinson's Community Los Angeles. (2022). 2023 Guide To Traveling with Parkinson’s Disease.
American Parkinson’s Disease Association. (2017). Be Active and Beyond. A Guide to Exercise and Wellness for People with Parkinson’s Disease.
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