They say, “it’s not the destination, but the journey that matters most.”
Whoever they are haven’t tried to plan and pack for a trip to a most awesome destination while managing their Parkinson’s (or many other conditions for that matter).
If you’re planning to get away in the coming months, here are some tips to make your journey just a bit more enjoyable, so you can be stress-free once you reach your vacation destination.
Carry identification and doctor’s note
A tough reality of living with Parkinson’s is being stigmatized in public for the way your body moves. Stories of people assuming someone with Parkinson’s is intoxicated or being impatient or curt with someone they don’t know has Parkinson’s, are not uncommon.
When traveling by air, if you’re comfortable doing so, consider a sticker, pin or even a hand written note that says “I have Parkinson’s” to account for moments when your voice may feel weak, you’re having an off-period or your meds are causing strong dyskinesia. Ask your doctor for a note that states as such as well, should you need additional assistance.
Prepare your meds for all scenarios
Keep your travel meds in a separate bag within your carry-on.
A large Ziplock bag would do the trick! While at your final doctor’s appointment before you depart on vacation, ask your doctor to provide a secondary note describing your medication and keep that note in the medication bag. Many people recommend keeping some meds in their original bottle if you typically use a pill organizer to keep your doses at the ready. Bringing the original bottle may help with some conversations at security.
Do you have a Duodopa pump and use the gel form of Levodopa? Airport security will definitely be asking about the liquid medication and a doctor’s note will surely come in handy! Pack more medication than you’ll need for your trip.
We can never predict what will happen while traveling. All we can do is cover our bases and have a back-up plan. If you lose your meds, your car breaks down, your flight is delayed, or your layover is longer than expected, you will find yourself needing more doses than you would have if everything went as planned.
Changing time zones? Time your next dose by the number of hours past, not the time of day.
Your medication works best when you keep your doses tightly timed. When traveling through different time zones, it’s not about the time of day but rather the amount of time that has passed. Our digital devices like smartphones or smart watches update to the new time zone automatically, which can be problematic if you’re used to watching the clock!
Your digital device can make this time zone swap easier to manage, though. Consider setting a recurring alarm, set to the hour interval between doses, not the hour of day. You’ll have the prompt reminders you need while you’re soaking up your vacation.
Arrange for assistance
Making sure you have support and comfort at your departure and arrival airports, and any layovers in between will make a huge difference. Every airport can offer shuttles or mobility aids like wheelchairs for yourself and your travel companions to cut down on the amount of walking you need to do in between gates. Imagine passing up this awesome service only to discover a 20-minute walk in between your gates just as your medication off-time kicks in. Take the help that’s offered and know you’re one step closer to your vacation!
Have your own wheelchair, cane or other mobility aid? Here’s what the Canadian Transportation Industry has to say about travelling with mobility aids and other assistive devices.
For comfort, consider wearing a fanny-pack style bag or cross-body satchel for your carry-on so your hands are free to help you balance while walking. Shoes that don’t require much effort to get on and off are also highly recommended when dealing with security.
If you struggle with sitting to standing, you can take a disposable plastic grocery bag with you to put in your seat on the plane. When you want to get out of your chair, the plastic reduces friction which makes it much easier to get up and out of that tight space.
Oftentimes, if you’re hoping to visit a museum or other attraction while on vacation, you can call and arrange to avoid standing in long lines if that is something you struggle with. Calling in advance to inquire about such a service can’t hurt.
For more helpful travel tips, including stretches you can do in your seat, tips for traveling by car, bus, or train, and more, check out Traveling with Parkinson’s resource at Parkinson Canada.