How (Not) to Travel with Parkinson's
Recently, on one of the Facebook groups, a woman asked if she should travel long distance since she has Parkinson’s disease (PD). The easy answer is that if she feels like she can, she should, but the more difficult answer is that “if the answer is ‘yes,’ then there are challenges a Parkie should be aware of before traveling.”
As a PD guy, in the early part of the game (somewhere in stage 2), my wife and I are in a race against time to actively see what we can of the world. Whether by foot, car, train, plane, taxi, boat, or winged monkey, there are just some things worth seeing. Recently, we went to Italy, which was mostly great (the Sistine Chapel is incredible - words can't describe it) though in part rough (being overstimulated trying unsuccessfully to find the meeting point for our Colosseum tour - having a meltdown was not my favorite). Thus, I present my advice to you so you can benefit, should you want to venture out and about.
Eating and drinking while traveling
There are standard times we eat and drink. If we don’t, we get rundown or sick. I'm also someone who gets "hangry," and I bet some of you do, too. This isn’t good. Planning ahead is a good thing since it can be costly to be buying water everywhere, though awkward to carry.
Bathrooms while traveling
Some places charge to use public restrooms. Since urination intervals can be shorter with PD, this can require a lot of loose change and discomfort. Also, some countries have different toilets. When I went, Italy had no seats. Turkey had holes in the floor. In a world where system changes can create irritability, we need to be ready.
Time schedules while traveling
A planned schedule is beneficial, but what if there's traffic, dilly-dallying other people, unforeseen events, getting lost, or just not being able to move because of our symptoms (for instance, dystonia, exhaustion, and apathy)? The key may be more spontaneity or minimizing the have to do things.
Having perspective while traveling
Missing a scheduled tour led to rearranging it for another day. We eventually got to the Colosseum and didn’t lose our money, but we lost Tivoli Gardens. Is my life going to be crushed because I will have to let Monty Day visit for me, or can I be thankful for what I did do?
Sleep while traveling
Bon Jovi once sang something about sleeping when he was dead, and on many vacations, usually you see as much of one area as possible in a small amount of time. Travel is expensive, so why not? However, between jet lag and early rises, lack of sleep leads to exhaustion, crankiness, and sickness. The PD person needs to assess this.
Personal space while traveling
Crowds can be a nightmare because of size, volume, and boundaries. In certain places, vendors will be up in your face hawking things you don’t want. Then, they won’t leave, even if you say “no,” “no!” or “NO!” If you can’t get to your quiet place and “just be,” are you going to be OK, or are you going to go into overload? Being constantly annoyed was one of my big downfalls.
Traveling by plane
If you travel on a long, overnight flight, you may want to sleep. Can you fall asleep on a plane? Will you act out in your dreams? When I did, I was twitching and popping my arm on the flight back, jolting myself awake. When I realized this, I stayed awake rather than explain my PD issues to angry inquisitors. Knowing your limits and advance planning help.
Pace of life
Right now, I’m used to town life. I don't worry about pickpockets or being in the wrong part of town. I know how cars travel on the roads around me. When we go somewhere else, we may find that we have to worry about these things. Whether it’s not being able to determine if we can cross the road safely or wondering about what will happen in a sea of bodies trying to see a site, these things can be scary. I definitely felt this.
From failures to communicate to getting the “tourist rates,” we can feel out of our element because we're used to things our way. We can love a culture, the geography, and the people, but sometimes we can really feel left hanging in the wind by ourselves when we don't mesh. Real and perceived can be the same thing in the mind. When irritability is a concern for us, it’s important to have a strong caregiver with to help navigate.
My mind went haywire after a combination of all of these things gone amiss. As the Colosseum hovered behind me, I found myself sitting in a sort of isolated area crying on my wife’s shoulder because I just couldn’t take it. All I could say is, “You don’t know how bad this feels.” In the midst of so much beautiful history, architecture, art, archaeology, I was a quivering mess.
Doing what I needed to do, I regrouped after my time out. We enjoyed the rest of the trip, but I will say that the surprise Christmas present Athens vacation this spring will be a lot different. I’m already cutting back on things we have to do and focusing on best case options.
For those of you able and willing to travel, I hope that life affords you the opportunity as long as possible. Don’t let Parkinson’s win, even if it makes your hands claw up while you're trying to hold up the Leaning Tower of Pisa. The world is still yours. Enjoy it and all of its beauty.
Do you participate in a support group for PD?