Vacationing With Parkinson’s: A Success Story
Taking a vacation when you have Parkinson’s disease (PD) is not simple. There is always anxiety about the disease making things go wrong.
Mrs. Dr. C. and I were invited to a family wedding, and the six months’ notice greatly benefited us. Not only did we have time to plan a trip to fit our limitations, but we also had the time to test our limitations. How much driving could we do in a day without being totally exhausted? How many days in a row could we travel before we needed a complete day of rest? But no amount of planning can account for everything that can happen.
On the flight out, there was a mechanical delay and we were stuck on the tarmac for an hour. We arrived at our first destination almost exactly when our next flight was to leave. Fortunately, the airlines held the plane for us, having registered us with medical issues. We deplaned at the last airport, and having missed lunch, my muscles were becoming rigid. Taking PD medications with a small bag of stale pretzels barely covered the levodopa protocol.
Our destination was chosen so we could attend the wedding (which was in one state) and visit a sibling (who lives in another state). This decision meant Mrs. Dr. C. had to drive a rental car. Seems like an easy thing, right? But not all cars are the same. It took us forever to figure out how to open the gas tank so we could fill up the tank and continue driving. Our new nephew-in-law was very patient and helped with the dilemma. We rented a comfortable car knowing that there would be many hours of driving, but we had not planned on the amount of time it would take to figure out where all the controls are.
The drive from the last airport to the wedding venue was at our maximum mileage limit. We met family halfway and followed them to the retreat. We had planned for lunch. But again, it didn’t happen. We had been texting family as we got closer, and we didn’t want to stop. After meeting up with them, we felt uncomfortable asking them to stop. We had planned to take rest breaks, but it didn’t happen. The long duration of sitting really took its toll. Fortunately, we planned rest time into the drive schedule (and before the wedding), and that helped.
Describing the limitations of PD to family is difficult, especially when the disease is virtually invisible. I kept hearing from family during the trip, “Oh my, you look so good. You haven’t aged a day in 25 years.” I’ve always aged slowly. I was still getting carded in my 30s. I may look all right on the outside. Internally, it’s a constant struggle to monitor pain, emotional surges, and motor movement. I was on high alert the entire trip, losing focus only once briefly during a late dinner. I apologized, to which the wedding couple responded, “We didn’t notice a thing.” We probably should have informed family that scheduled meals between levodopa doses helps to alleviate symptoms. But we did not. It was their wedding.
My biggest worry prior to this trip was that I would have one of those dreaded combinations of “ugly day and off period.” The bride specifically asked me to dance at the reception. I kept praying that I would have the resources needed and was grateful to enter the dance feeling fairly good. During the dance (I shuffle rather than dance) she whispered in my ear, “You saved my life, and I will love you deeply forever.” At that moment there was an intense emotional surge of love, joy, and gratitude. My eyes flooded with tears. I turned my back on the numerous cameras, took a deep breath, and asked the bride for forgiveness because I had to leave and regain composure. Emotional surges for me include positive emotions, and I cannot focus on motor movements during such a surge. Mindful motor movements are my primary mental state. It’s hard to describe to others how important this is for my well-being with Parkinson’s and how hard I work at it.
The anxiety of a vacation filled with PD mishaps was minimized with proper planning, mindful motor movement practices, and the support partnership. The success of the vacation was in large part due to Mrs. Dr. C. handling all the logistics, hours of driving through two states, and getting the gas cap open.
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.
Dr. C, great article! I am glad you enjoyed your vacation. The link you posted to Dr. J. Eric Ahlskog' s article was very, informational. His book is my PD bible. I also so relate to the comment about how great one looks. I understand how you feel when people say that, yet I am so torn up and miserable inside and so uncomfortable in my own body.
Wonderful article, Dr. C. Thanks to Mrs. Dr. C for her organizational vacation skills as well. Sounds like it was a memorable vacation!
Thank you for sharing your vacation success and all the "mechanics" of how you worked toward success. My cousin/best friend was recently diagnosed, so I make it my business every day to learn something new about PD. So, thank you again. Since we live in different cities, I assure my cousin, at every opportunity, that I will always be here for him. I ignore his "pulling back", including canceling our plan to spend time together. It's physically difficult for him to text, and he will speak over the phone / Facetime only when he initiates the call. I have had to back off calling him as he will seldom pick up. Understanding PD is helping me keep my determination to help someone I love!
My husband suffers from oarkinsons and we can both relate to the problems on your journey.
I. IIn a crowd I too am uncomfortable and Ian extra worried about my balance.. Has anyone tried the theracycle.