When we landed in Dallas-Fort Worth, I had a message from American Airlines that it had changed our seat assignments. For our leg to San Antonio, we’d be sitting in the inside two seats of a back row. We had just come to terms, on that first leg from Fort Myers, Florida, with the fact that my husband could no longer occupy his favored window seat. It was near impossible for him to get up out of it.
At the gate, I spoke with an agent and explained my husband’s situation — the first time I’d publicly voiced it, and I felt a little like I was taking advantage of his health issue. The agent, however, was more than compliant. She not only got us back to our original seats but had us board the airplane first, ahead of all the other passengers. It is one of many lessons I’m learning on this new journey I’m taking in life: Don’t be afraid to ask for help.
Note: Some of the travels described herein were sponsored in part.
Parkinson’s Plus COVID: Crashing Into Change
We had heard Rob’s diagnosis two weeks after I returned from Japan in December 2019: Parkinson’s Disease. Right before Christmas. A couple of months before coronavirus impacted our lives. He was 68.
In early January, I took a short, planned work trip to the Bahamas, one of my regular beats as a freelance travel and food writer. I didn’t suspect it would be my last flight for more than a year.
We looked forward to a birthday weekend in St. Augustine, Florida, in March and a trip to Ireland in April. Of course, neither happened.
Yes, my husband’s PD has changed the way I travel, but COVID-19 also affected things in ways bad and not so bad. Because Rob was anxious to travel while he still could, we hit the road soon after lockdown and as often as possible. Then he was diagnosed with bladder cancer. Then skin cancer. (“You’re not going to get much on trade-in for that model,” my friend quipped in a text.)
Rob and I have always traveled. We’ve covered ground from a Maine Windjammer sail and a week in Quebec to excursions to New Zealand (where he scuba-dived, I wimped out because of the cold), Iceland (where we did two ATV adventures), and Croatia (where we island-hopped with two friends). Now grounded by a pandemic, we yearned for the escape travel afforded us from the respective businesses we run.
Road-tripping at last, we traveled to North Carolina’s Blue Ridge and the Great Smokies in September 2020. The necessity to change my travel patterns already began surfacing. His fear of heights reached crippling altitudes and the slowing of his pace made me pause. It became apparent: No more researching for in-depth destination articles with Rob along. I would have to travel without him — which I’ve done much of my career of 30 years. Or change lanes.
Then, in December, a short road trip across Florida resulted in a COVID-19 infection for both of us. Another roadblock. In February 2021, I flew again — to St. Croix, USVI, for work. We took that flight to San Antonio for our birthdays the following month — our first flight together since COVID.
Learning New Rules Of The Road: The Hills And Valleys
As he progressed to stage 2 PD, I feared leaving him home alone. He insisted, I acquiesced. Maybe for the last time, I thought as I left, I flew alone to West Virginia for a travel writers’ meeting. All went well on both ends, despite my fears of him falling and being unable to get back up.
Now, just off a two-week road trip and in the midst of a one-week leaf-peeping jaunt, we’ve learned more hacks and tips for making it work while continually adjusting to a merciless disease that keeps changing the rules of the road.
What has surprised me most, as I change my way of travel, is how rewarding slowing down to Rob’s pace can be. Sure, I’ve had to sacrifice some adventure. After he attempted driving the hairpins and needles of Grandfather Mountain in North Carolina, elevation 5,946, we brought it down several thousand feet.
I write this from a rustic cabin in the Kentucky woods of Red River Gorge. Yesterday, we drove up to 1,100 feet and did a half-mile hike to Whistling Arch. The trail was rutty, rocky, and slightly inclined, but I had bought Rob a set of hiking poles, which helped him keep his balance and feel secure. The trail was a challenge that he felt proud about overcoming.
Prepare, Learn, Prepare, Lean In
That’s the trick: gauging his ability and knowing when to turn around or say no. Being physically equipped is equally important to being mentally prepared. For instance, driving: My husband is an excellent driver who has done some speed racing in his time. It’s crucial he keeps that confidence. This last trip, we discovered the lane-assist feature on our car, which was a big help on twisty mountain roads. I’ve also found that occasionally forsaking interstate highways for backroads goes a long way towards lowering anxiety levels.
Flying requires careful timing. Plan long layovers or arrange for a wheelchair, I’ve learned. Ask for help: People are particularly understanding and sympathetic when it comes to PD.
Building in extra time and not over-scheduling are important no matter how you’re traveling. Allow for napping. I’m not a patient person, but I’m learning. I would sometimes forget how long it takes him to get dressed, eat a meal, get in and out of the car. (Speaking of eating, ask for a serrated steak knife at restaurants whenever cutting anything is involved).
Where accommodations are concerned, avoiding stairs and tripping hazards is a no-brainer. PD victims are often bed-thrashers, so separate beds, even bedrooms, is ideal. Rob finds that satin sheets allow him to roll over more easily, so if we’re staying in a vacation rental for a few days, we bring them along. A year ago, we glamped in an Airstream in Tennessee. That would’ve worked okay for us this year, but a two-bedroom cabin, roomier and less restricting, was more comfortable.
Pick appropriate activities. No ziplining or mountain climbing or even kayaking for us in Red River Gorge. We stopped at the welcome center and asked for a scenic drive and a few short, easy hikes. Stops along the Bourbon Trail were more Rob’s speed.
Accessible travel has become a rising niche as the baby-boomer generation ages and keeps on the go. Resources are mushrooming, such as accessibleGO.com.
If the time comes when you need to travel on your own, leaving your spouse at home, make sure he or she has proper assistance — whether that’s a medical alert service or a family member or professional to check in or stay in the house.
Looking out my cabin door at Rob soaking up the cool fall day on the deck, I’m gladdened. Traveling takes the tedium and worry from a disease that haunts us every day of our lives, but more potently, his. It keeps Rob active, engaged, and curious. We shall continue and amend as long as we can.
Health issues often affect travel. Here is more advice to consider:
