Traveling with Parkinson’s disease is predictably unpredictable

Planning a vacation or any type of trip can be exciting; it’s fun to have the calendar full of events. Our family has been fortunate to have traveled to many parts of the world.

We traveled often before my husband, Arman, was diagnosed with early-onset Parkinson’s disease in 2009, at age 38. We loved to take our kids on exciting adventures to create lifelong memories. I believe that giving our children these experiences is much more valuable than a tangible object would be.

Today, travel isn’t easy, especially when airports are involved. I recall the good old days before we had to remove our shoes, belts, jackets, and other items just to get through security.

Adding a chronic illness like Parkinson’s disease to travel plans can complicate the logistics even more, especially when, like my husband, you have a deep brain stimulator and can’t go through the traditional security scanner. There are perks, however, and the best we’ve found is pre-boarding with a wheelchair.

Recommended Reading

May 4, 2023 News by Marisa Wexler, MS

PharmaTher seeks fast-track status for ketamine

With Parkinson’s, packing for any trip, long or short, takes effort. In our case, medications must be sorted, counted, and re-counted to ensure proper quantities. Extended trips may also involve early medication refills so that we never run low. Additionally, we can’t forget to pack the charger and programmer for Arman’s deep brain stimulator.

Travel can be exhausting, with connecting flights and delays that can take a toll on anyone. Another significant challenge with Parkinson’s disease is changing time zones. Adding a time change to the normal exhaustion of travel can cause a Parkinson’s patient a double dose of pain. The disease doesn’t give you a break, even on vacation. Arman’s Parkinson’s prefers the comfort of our home, time zone, routine, and familiar surroundings, and it doesn’t take kindly to the unknown.

Rolling with it

Recently, Arman and I attended a family friend’s wedding. We had to travel across the country, and although we knew it’d be a challenge, we wouldn’t have missed it for the world.

We were fortunate to go with great friends who did everything possible to make our journey easy and fun. Luckily for us, we had a smooth day. Both flights were on time, we made our connection, the luggage arrived, the rental car was fresh and clean, and we made it to the hotel with time to spare before the rehearsal dinner.

The rest of the weekend was more challenging. Arman wanted to attend many events, but often his Parkinson’s had other plans. By the second day, he was unusually slow and stiff, undoubtedly a result of those flights and a long day. Arman listened to his body, which meant we could only attend the start of the reception.

We were both physically and mentally exhausted on the return trip. His body needed to be home. We canceled all of our plans for that week so he could rest, and rest he did.

Unfortunately, there’s no way to predict how Parkinson’s will react to travel — or anything, really. We do our best to manage what it throws at us and roll with the punches. We won’t let the unpredictability of Parkinson’s stop us from attending important events, visiting family, and enjoying our life. And we’ll continue to make modifications to keep Arman comfortable and safe.

After almost 15 years as a caregiver, I’ve come to accept that as we make plans, Parkinson’s laughs.

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.