As I have mentioned previously, PD can be a real annoyance. This is especially true when traveling with PD. Old Mr. PD will do just about anything to mess up your trip and make you miserable. And unfortunately, he is always hanging around! (Personally, I'd love to leave him beside the road somewhere in the desert with the coyotes, never to be seen again!)
But with a little forethought, you can travel with PD and still enjoy yourself and your trip to the fullest. My wife and I just finished a number of small trips for our nieces' graduations plus a mini-vacation to St. Louis to visit friends... so I thought I would, for this post, give some ideas for traveling that I have used - I hope you too can use them to enjoy any summer trips you have planned.
First and Foremost - Your Meds!
This is almost a no brainer for us Parkies, but it is the first thing I think of and do now when I travel. And that is to make sure I have all the necessary meds with me. So here are some tips that I have found helpful:
The obvious: Don't Forget Them! There's nothing worse than going down the road only to remember that you left your meds sitting on the kitchen table! They are always one of the first things I pack up. (And I always double-check to make sure they are packed before I leave the house)
Bring Extra - Because you never know if, for some reason, you lose a few pills here or there; drop them on the hotel floor (yuk); or if for whatever reason you have to stay an extra day somewhere. I always make sure I have at least an extra 3-day supply with me.
Pack All Your Meds in Your Carry On - Because you know as well as I do that if you are traveling by air (or even by train or bus) there is a chance that your checked luggage might not make it to your destination when you do (if at all). Carrying them with you makes sure that they are there when you need them and won't get lost (or delivered to timbuktu!)
Always Keep a Full Day's Supply of Meds On Your Person - This is by far one of the most important things you can do with your meds. I always have a full day's supply of my PD meds with me at all times. If you get stuck somewhere for the better part of the day (or stuck in a traffic jam) and your meds are with you then you'll be set.
Bring Water - Because that way if you need to take your meds on the go you'll have the liquid necessary to take them. Nothing is worse (for me anyway) than having to dry swallow a Sinemet!! (Hack, cough, hack)
Stick to your Routine - Try as much as possible to stick to your normal med routine while traveling. That means taking your meds at the same time each day that you would at home. Remember, your brain is used to getting its dopamine 'fix' at the same intervals, so changing that around will only mix it up and cause Mr. PD much glee as he jumps all over your brain!
I am one of those crazy people who, as my wife says, packs everything including the kitchen sink! (You never know when you might need a kitchen sink!) Usually lifting my suitcase requires the help of five gorillas plus a herd of Clydesdales! But now that I am traveling with PD, I'm 'trying' to learn to pack a little lighter but definitely smarter. So here are my tips for packing:
Pack Early and Light - Pack early so that you are not rushed at the last minute - with Parkinson's this only makes us more anxious and that usually makes our symptoms worse. And try to pack as light as possible. I find that having some of those 'space saver' bags helpful - you know, the ones you put clothes in and then use a vacuum to 'suck' all the air out. They make it easier to pack things into your suitcase.
Be Comfortable - One of the most important things I do is to plan ahead and pack clothes that are comfortable. This means looser fitting, lighter clothes (if possible) especially if you have movement issues. If you are going to be out in the sun a lot a hat is probably necessary. And make sure you bring comfortable shoes - nothing is worse for a Parkie than trying to walk around with shoes that don't fit, are too tight, or just plain uncomfortable.
Pack Snacks and Drinks If Possible - Don't rely on always being near food nor watering holes. Bring snacks you can eat in the car (My wife rolls her eyes whenever we travel by car because I always get Tootsie Rolls), and make sure you bring some bottles of water. Use a small cooler if necessary to keep them cool.
Use a Checklist - If you think you might forget something, make a checklist beforehand. Don't wait till the last minute to do this, though: Do it way in advance of your trip so that you can continually modify and add to it if necessary. Having such a list will help greatly in ensuring you pack the right items but not too much.
One of the most important things we seem to forget to do while traveling is maintaining your exercise schedule. Exercise, remember, is the only proven thing so far that slows down our disease. If you are out and about seeing the sites and walking a lot, that can definitely count as part of your daily exercise. Don't forget, though, that a lot of hotels these days have exercise rooms - so remember to take some exercise clothes with you and make use of those facilities! Trust me, it will help you keep in shape while traveling.
One of the things that PD likes to inflict on me is fatigue. And some of us travel so hard that by the time we get home we need another vacation to get us over the vacation we just finished!!
So first and foremost, pace yourself while traveling. Know when your body tells you to slow down, and make sure you get enough rest. I like to (if possible) always have at least one day during my trip that I call a 'rest' day - a day when we don't do much of anything... Maybe just hang around the pool and read a good book. Or take a long afternoon nap in our room. However you do it, make sure you take care of yourself and don't go hog wild with activities - take a breather occasionally. Your brain (and body) will thank you!
Prepare For Security
This is something I just had experience with myself. We went to St. Louis and not only went up the Gateway Arch, but also went to a ballgame. Having DBS, I could no longer go through the metal detectors, so I had I to plan ahead by arriving a little early to take into account the extra time it would take for me to be 'frisked' instead of setting off all the alarms because of the metal in my chest and brain!
So make sure you plan ahead for security, and arrive early if possible. And most importantly, if you have DBS or any other 'hardware' inside you, make sure you remember to bring your medical ID card to show to security! (And if you have DBS, be prepared to explain what that is - "What's your medical condition?" "I have DBS." "DBS - what is that?" "Deep Brain Stimulation - I have two wires inserted into my brain and a neurostimulator in my chest." Which then usually results in strange looks from the security guard.)
When traveling, you usually end up eating out quite a bit (or eating with friends or relatives).
If you're like me, though, and have digestive issues due to PD, remember that not only do you have to watch WHAT you eat, but WHEN you eat. In my case, Parkinson's has slowed down my digestive system to a crawl so eating a big meal late usually results in issues at bedtime and into the night (because of PD, my stomach usually takes about 8 hours to get a relatively large meal moved through). So if possible, eat smaller more frequent meals, and don't eat too late. Also, make sure you bring any stomach meds with you just in case (such as Tums, Dulcolax, Pepto, or a specific prescription if you have one). There is almost nothing worse that not getting the rest you need because you are up half the night with heartburn or indigestion!
Other Medical Accessories
Remember to bring any other additional medical devices you need during your trip. For me, that includes my MedicAlert bracelet, a list of my current meds, my doctor's name and phone numbers, and in my case, my DBS Patient Programmer.
And as I mentioned before, don't forget any medical ID cards you may need!
Enjoy yourself! And Don't Be Ashamed!
Remember, having Parkinson's doesn't mean you have to stop enjoying life nor, in most cases, stop traveling. If you can, don't be afraid to travel - just prepare beforehand. Yeah, I guess you could call me somewhat of a pessimist for saying this, but I always think before traveling to prepare for the worst but hope for the best. Thinking that way, for me anyway, allows me to prepare ahead of time for anything that might come my way, and be ready to tackle it head on.
And don't be ashamed of having Parkinson's - it's not a sign of weakness to ask for help if you need it. Most importantly, no matter if you travel by car, train, plane, ship, or hoverboard (!) make sure that you ENJOY YOURSELF! And tell PD to take a hike!
See you out there on America's highways and byways!