Traveling with Parkinson’s Disease

By Sara Penhale
This is the first article in a special series on Travel and Parkinson’s.

In getting ready for my winter trip to Iceland, where temperatures range from 28-36 degrees Fahrenheit, I paid careful attention to the packing list provided by Road Scholar, the tour company running my trip. As instructed, I brought plenty of layers of clothing. I wore an undershirt, a thin wool/synthetic sweater and one or two layers of leggings as my basic daily clothing, then I added layers of outerwear as needed. I had a down vest, a hooded down coat, and an outermost waterproof jacket. I could barely squeeze all layers on at once and I looked like a sausage bulging at the seams when fully suited up. 

I soon discovered that I couldn’t manage all those layers. Like many others with Parkinson’s, I have limited flexibility in my torso, shoulders, and arms. My weak and clumsy fingers can’t easily manipulate buttons and zippers. I might have been able to dress myself if given enough time, but I never had enough time. Each day we would layer up to go outside and visit glaciers, geysers, and frozen waterfalls. While in the bus riding from place to place, we might warm up and need to remove a layer or two and then we would need to suit back up to face the 55 mph winds at our next stop. All of the other travelers could accomplish this quickly and leave the bus while I was still in the aisle struggling to layer up.  

Prior to the trip, I thought that keeping warm would be the main challenge. Instead, it was putting on and taking off all the layers needed to combat the weather. I needed my husband’s help in making all the en route layering adjustments. I wasn’t happy looking like a second grader getting dressed by a grown up, but the real problem was how tired it made me. It was draining to be continuously anxious as I frantically pushed myself to move faster and keep up with the others.

Eventually I wore only the two thickest outer garments and skipped the third. My husband and I got better at pulling up sleeves and getting zippers going. I forced myself to not feel self-conscious about my limitations. I don’t know how I could have anticipated this issue. I had carefully read the descriptions of the activities on the tour and the physical condition expected of participants. I carefully chose my clothing but I didn’t foresee that all the layering would cause such a difficulty.

I am telling his little story to illustrate what I consider to be two key elements of travelling for persons with Parkinson’s; or for that matter, anyone who travels.

  • Prepare yourself as best you can

  • Be prepared to adjust, as best you can, to unexpected circumstances

My story also reveals that I failed at a third important principle of travel: Have a sense of humor. If I had a been bit more light-hearted and joked, either to myself or to other travelers, that my dressing skills had dropped to those of an eight-year-old, I could have shed some of my anxiety and enjoyed myself more. Laughter may not solve a problem but it can help lighten the load. 

Stay tuned for Part 2 in this special series on Travel and Parkinson’s, coming in April! In the next installment, Sara details potential pitfalls for PWPs traveling and ways to combat them.