Traveling with Parkinson’s disease is a little different, but I got this

In 1991, my husband, John, and I got married, quit our jobs, and cycled around the world for a year. John was an engineer and I was a chef, and we had friends who’d traveled to Australia and Asia the previous year. “Why not?” we thought. It was a fantastic decision.

We cycled 21,000 kilometers (about 13,050 miles) through 16 countries. It was a year of incredible adventure and many challenges. We met new friends and wrote endless letters home. It was a blissful start to our new life together.

Since Parkinson’s disease crashed into my life in 2015, we can’t help but reflect on how lucky we are to have made this trip when we were both strong and healthy. Every day, we talk about our life together and how fortunate we are.

During our trip, we planned very little. We used maps to navigate our route, took flights between a few countries, and camped most of the time. When camping wasn’t an option, we stayed in many guesthouses and hostels. Once, in India, we stayed in a jail, and in Thailand, we stayed in a brothel. Another time, we camped in a potato field in Turkey. One horrible night, a drunk driver almost ran us over in a campground on the North Island of New Zealand.

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A couple of times, when cycling became an overwhelming task, we would “hitch-bike.” Yup, we stood at the side of the road with our bikes and put out our thumbs. A soft-drink truck picked us up. It had a giant pile of plastic cases filled with empty pop bottles in the back of the pickup. With our bikes, we climbed to the top of this immense mound and balanced ourselves precariously. A terrifying trip through the mountains of Turkey ensued for the next hour. I don’t recommend this method of travel.

Were we sick? Yes, violently and frequently. We’d brought a powerful antibiotic with us, but it came with strict instructions: Take it only if you have bloody and explosive diarrhea. So if we couldn’t tick both boxes, we had to improvise. Usually, we’d eat our meal, judge how we felt for an hour or so afterward, rate the place’s cleanliness, and then go to a pharmacy where John would point at me and say, “Diarrhea.”

Finally, in Nepal, I took the nuclear option antibiotic, and 20 minutes later, I felt completely fine and was good for the rest of our trip.

Planning our trip today

Recently I’ve been planning a winter trip for us. Why does everything seem so complicated now? I’m booking everything in advance. There’s no room for error and flexibility. We need to rent a car, which is completely stressing me out. Cycling through a roundabout in central Bangkok seemed like a breeze 32 years ago, and now I’m worried about driving in Europe.

The luggage we’ll take for 10 days is about three times what we took for a year. In our bike panniers, we each had one pair of pants, one pair of shorts, three T-shirts, one sweater, one jacket, and three pairs of socks and underwear. We each wore one pair of shoes, and that was it. For this current trip, we’ll need an entire suitcase just for our medications, vitamins, and footwear.

In 2020, we were in Portugal just as the COVID-19 pandemic started churning everything up. At that point, I remember thinking that trip might be my last because I found it very challenging. My tremor and slowness from Parkinson’s, my difficulty walking, and my overall fatigue were exhausting.

Then, after I had deep brain stimulation surgery in 2021, I felt that I had a second chance at life and decided I could indeed travel again. So here I am, stressing about it when I should be celebrating.

Parkinson’s can play tricks on my mind. It whispers in my ear and tells me I can’t do something when I clearly can. Sometimes I think back to that first year of marriage to remind myself that I’m strong and capable. Parkinson’s tries to make me feel weaker and incompetent, but I’m stronger than I’ve ever been! So take that, Parkinson’s.

I had a wonderful life before my diagnosis, and I intend to continue it.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.