Vacationing with Parkinson’s

I just got back from a weeklong vacation in Maui with my wife and two boys! We had a great time! You would never know it from looking at the great vacation pictures but, the trip was not without its challenges. Having Parkinson’s disease made it a bit extra challenging in several ways. Read on to learn how my Parkinson’s affected my family’s vacation.

Parkinson’s doesn’t take a vacation – Many PwP have special regimens to help manage their disease. Some have special diets. Most do some form of regular workout. These special measures taken to help manage the disease can’t really stop just because you’re on vacation. To help manage my Parkinson’s disease symptoms, I usually work out…a lot. Most days you’ll find me squeezing in climbing, or mountain biking, or Jui-Jitsu, weight lifting…anything to keep me moving. While on vacation, it’s tempting to ease up a little on the exercise. It’s a vacation, you should relax…right? Well, for me it’s not that simple. Either I put in the extra effort of finding alternative ways to keep up my movements (and relax a bit less), or I can blow off my workouts a bit and endure the resulting increase in symptoms. I found it hard to maintain a good workout schedule and didn’t workout nearly as much as normal for the week in Maui. As a result, I noticed an uptick in the frequency and severity of my symptoms, particularly my walking. It’s easy to forget how effective regular intense exercise is at controlling my Pd symptoms. This past week served as a reminder for me. While I definitely did enjoy the vacation, now that I’m back home, I’m eager to get back into my workout routine.

Take all the challenges of travelling, then throw medications into the mix – I take medications every 4 hours to help control my symptoms. When I’m on vacation I have the extra stress of making sure they are nearby and accessible at nearly all times. If my medications were to get lost this would present a huge problem. It’s not like food, that is available on every corner. I suppose I could possibly get some emergency pills at a pharmacy but they would likely need a prescription from my Movement Disorder Specialist (MDS). Also, suppose it’s the weekend…and I’m in a time-zone with a 6 hr difference… and it’s not like this medicine is to ease an upset stomach. If I don’t take them, I feel absolutely terrible and I. can’t. move.

Shudder…

I simply can’t let that happen.

Also, I found it was hard to get back into my medication regimen with the time change. In fact, with the 6 hour change, the reduced exercise, and a sleep schedule way out of whack, I found I never quite got my medication regimen back on track the week I was in Maui. That is, they never quite seemed to be quite as effective as normal. This, despite dutifully carrying around a small pharmacy with me wherever I went.

Planning is nearly impossible – You might have planned to go for a hike, but if your Parky body isn’t cooperating…well….you can either forgo the hike or accept that it might take a lot longer than you anticipated. Either way, your plans get altered. With Parkinson’s. this is just the reality you have to get used to, like it or not. Besides widely varying severity of motor symptoms, I (and I think many if not most PwP) am also susceptible to bouts of fatigue. This seemed to be particularly true while on vacation. These things can work to quickly unravel your careful planning. That’s why with Parkinson’s, flexibility is key. It is also important to just have the mindset that is accepting towards inevitable changes in plans.

People will notice you, for better or worse – With Parkinson’s, you can say goodbye to just blending in with the crowd. When stumbling around in an “off” state you’re sure to draw some funny looks from people. Most people don’t really care or say anything but sometimes they will. I overheard some folks making some snide comments when I parked in the handicapped parking spot at one of the beaches we visited. I started to get up to educate them on the fact that there are ailments in this world that you can’t see but stopped short when it was clear they weren’t going to stop and wait up for me and, walking poorly at the time, I just wasn’t up for limping after them.

It adds extra burden on your family – From needing to accommodate all your exercise needs (or your frequently being unable to move very well otherwise), to being patient with your un-predictableness, vacationing with a PwP is, unfortunately a bit more work. My wife did most of the planning for the vacation, really out of necessity. At times I just can’t move and speak well enough to keep things rolling. So even if I’m feeling good and moving well, she always has to be fully aware of the plan, so in the event that I start getting “Parky” she can take over and orchestrate while I lay low until I’m moving better. This is of course more burden on her. Sometimes I’m feeling fine and I’ll jump right into the water with the kids to splash and frolic or take part in whatever family activity is going on. Other times, not so much…which can be a bit disappointing for the family…and me.

Sometimes you miss out – The final point here is pretty obvious but just want to be clear here. Parkinson’s will make you miss out on some things. Simple as that. The one that hurt me the most in Maui was when we took surfing lessons. I misjudged how quickly I would blow through my meds while surfing so while I started out great as time went by my balance got worse quicker than anticipated. I didn’t have any meds on me so there was nothing I could do. When the photographer came out and invited everyone to show off their new skills I got to watch as everyone surfed to shore high fiving and showing off. Me? I was so Parky I needed the instructor to help me get out of the water. While it was still worth doing and I’m so glad my family had a great time, it was a little disappointing for me.

All in all it was still worthwhile to vacation with the family, regardless of Parkinson’s making itself an uninvited guest. That doesn’t mean that Parkinson’s didn’t have an impact. It did. But with proper planning, built-in flexibility, and a good mindset, my family and I still managed to make great memories that will last a lifetime! Despite Parkinson’s!

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