By Sara Penhale
This is the second article in a special series on Travel and Parkinson’s. To read the first, go here.
Now, the story turns to you. Your travel experience will vary according to what type of traveling you are doing: flying to a single destination to visit family, touring on an itinerary you have planned, embarking on a group tour. And it will depend on your own particular Parkinson’s issues. Your goal is to become aware of common travel challenges and consider how best to prepare for them.
Packing
Follow general principles of traveling light. Minimize the amount of clothing and other items that you carry. You don’t need as much as you think and bringing it adds to weight and the confusion of living out of a suitcase.
Start with a packing list. If you have memory issues, bring the list with you. Note on it where you have put important travel documents and medications so that you don’t need to rumble through your luggage trying to figure out whether you brought something or not.
Decrease the stress of on-the-spot decision making by planning full outfits you can wear ahead of time. You don’t need to accessorize to create different looks. Simplification is more important.
Bring walking sticks to help with balance and alert others to avoid you.
Don’t forget to bring a refillable bottle so that you have water with you for daily medications.
Bring a small powerful flashlight and carry it with you daily. Light levels are often low in hotel rooms and restaurants. At night, low outside light levels can make walking more hazardous for those whose walking is already compromised. Your cell phone’s flashlight is not strong enough.
Medications
Travel with the names of your doctors, insurance company, emergency contact, and a list and schedule of your medications.
Ask your doctor if you can safely take travel-related medications such as anti-malarials, drugs for motion sickness or high altitudes, or antibiotics for intestinal problems.
Pack enough medications to last the entire trip, plus a few days extra. Do not plan on relying on out-of-town pharmacies for refills.
Keep all your medications with you in your carry-on. Never put medicine in checked baggage, as luggage can be lost.
Carry a day's dosage of medication readily at hand in your pocket or purse. Have water with you.
Set alerts on your cell phone or smart watch to remind you to take pills, since you will be distracted by your activities
If you travel across time zones, begin taking pills according to the time interval between doses, not by thinking about time of day. Say, if you ordinarily take pills at 8am, 12 noon, 4pm and 8pm, each time you take a dose, set a timer to alert you when four hours have passed and it’s time for pills. As you move to a different time zone you may need to take an extra dose or skip a dose to synchronize your dosages with the clock again.
Travel by Air
Book a non-stop flight if possible and call the airline to ask for an aisle seat.
Distances in airports can be challenging and directions confusing. For instance, in Atlanta it requires about 40 minutes to walk and ride a tram to the most distant concourse. Bring walking sticks. Ask the airline to arrange for someone to take you to your gate in a wheelchair even if you don’t ordinarily need one.
If you have your own wheel chair, you can check it in as luggage and retrieve it at your destination. Airport personnel will take you to your gate in one of their wheel chairs.
Check your main bag and carry just a small bag with you. Consider a small backpack because this leaves your hands free.
At the gate, ask for early seating to give yourself more time to settle in
Use the bathroom before you get on the plane. Airplane bathrooms are small and awkward to use.
Join TSA Pre-Check. Its expedited screening program means you don’t have to remove your shoes or light jackets, and you can leave your laptop and limited amounts of liquid in your carry-on. For all passengers over 75, you don’t have to remove your shoes.
Lodging
Consider what limitations you have and then ask your lodgings staff if they can meet your particular needs.
If you cannot climb stairs, ask for a room on the ground floor. If your room requires using the elevators, request a room as close to the elevator as possible.
Ask for a room that is handicapped-accessible if available.
If your room doesn’t have grab bars in the shower and you feel unsteady, lay a towel on floor to stand on and increase your traction.
Before you undress to take a shower, make sure you can figure out how the shower works. There are all kinds of arrangements for setting temperature and water flow and you might need instructions.
Before you take your glasses off, check which containers hold the shampoo, conditioner and shower gel.
Consult the website Handiscover for accessible hotels, B and Bs, and vacation rentals worldwide.
Activity level and rest
You will probably be walking more than you usually do. Get ready by taking daily walks well before departure.
If you are planning your itinerary, allow time for leisurely sightseeing. Schedule in rest time.
Consult the website Handiscover
If you are on a group trip, conserve your energy by choosing to do the activities you are most excited about and skip others.
Travel requires adherence to schedules. If you move slowly, allow extra time to get to planes on time.
Sleep
Bring a sleep mask, ear plugs and a neck pillow for sleeping on the plane.
Hotels all seem to have huge extra firm pillows. You might want to travel with your own pillow or fold a piece of clothing and put it in a pillow case.
Be forewarned that many hotel beds are now higher and have soft cushiony tops that make it harder to turn over.
If you are crossing time zones, get adjusted as quickly as possible by spending time outdoors in the sun and by immediately getting on the sleep/wake cycle of your new location.
Misunderstandings
Parkinson’s symptoms like an unsteady gait or slurred speech can lead to the conclusion that you are drunk. In one British study of people with Parkinson’s, about 20 percent said they experienced this.
Thirty percent of those surveyed reported that their frozen facial expression was interpreted as being unfriendly.
While rude comments are generally due to the fact that most people know little about the disease, it still hurts. You are not obligated to educate others. Do what you need to take care of yourself.
Cognitive issues
Be aware that cognitive changes such as forgetfulness, difficulties with decision-making, poor orientation and navigation can all affect ease of travel. Add in anxiety as a factor that can impact your experience.
Being well organized and making lists can help you remember important things. Put medications and travel documents in secure yet accessible locations and keep them there.
To help create memories of your travel, keep a very brief diary of what you do each day. Type it into your cellphone or record a narration if you have difficulty handwriting. If you are traveling with others, take turns writing the daily entries.
Travel with a companion who can manage the details of travel and issues that develop during the trip.
The Most Difficult Travel Challenge
Asking for help
Many of us find it difficult to ask for help. We prefer to maintain a sense of competence and independence, ready for whatever experiences come our way. In fact, that’s one the reasons that travel can be rewarding. It puts you in the path of new experiences.
You will travel better if you have physical stamina and emotional reserves. Accepting assistance will help you master new activities. Something as small as helping someone put on their coat makes a difference, as I well know. Something more substantial, like allowing yourself to be wheeled through an airport is fair game. It may feel odd to be in this position, but it is okay not to wear yourself out walking. Embrace new approaches to keep you traveling.
Finally, traveling with people who know you well can make things even easier. They know what kind of assistance you need without asking. They know when to stand aside and let you do something unaided. And you can share the joys of travel together.