Traveling With Parkinson’s Disease
By: Alison Monette, R.N.
Someone once said “Never traveling is like reading the same chapter of a book over and over again.” Receiving a diagnosis of Parkinson’s Disease does not mean the end of traveling, whether it be to new places around the world or back to the places you know and love.
RESEARCH YOUR TRIP
The most critical task when planning to get away is researching your destination. Gone are the days of spontaneous travel. You need to know where you are going, who you are going with, what kind of resources will be available to you once you get there. This is important, even if you are traveling back to a familiar place. It is important to look at places you have been with a new set of eyes, taking in to consideration your diagnosis and the restrictions associated with it. The more you research, the more prepared you will be. Do not assume you will find your way around once you reach your destination.
Consider all of your options carefully, especially lodging. Look for places that have an elevator or ask for rooms on the ground floor if navigating stairs are difficult for you. Ask if handicap accessible rooms are available, since they tend to be closer to the entrance, roomier and fitted with assistive devices to make mobility easier. Take advantage of what is available. For example, when choosing between resorts on a Caribbean island, look for the facility that provides golf carts to drive between your room and the beach or restaurants if walking long distances is difficult for you.
Once you have decided where you are going to stay, educate yourself about the location of the nearest hospital and pharmacy. If you are traveling outside of the country, make sure you know the limitations of the local healthcare system and what your health insurance plan will and will not cover. You may also consider adjunct health insurance.
When it is time to decide who is going to go with you, consider your travel companion carefully. Decide if whoever goes with you needs to be aware of your diagnosis, needs, and limitations. If you are more advanced and need a greater level of care, think about if it would make sense for a caregiver to accompany you on your trip.
While your goal should be to engage in the things you enjoy, plan activities that match your physical ability. Safety should always be at the forefront of your mind when planning how you are going to spend your free time. For certain outdoor pursuits, consider discreetly informing a guide or activity leader of any concessions you may need.
NAVIGATING THE AIRPORT
Allow yourself plenty of time to navigate your way through the airport. Airports tend to be crowded, fast paced and stressful…three characteristics that may make Parkinson’s symptoms increase. For example, gait freezing tends to gets worse if you are rushing or in the midst of lager numbers of people. Consider smaller airports if they are an option, and try to take non-stop flights so you do not have to make your way through multiple airports. Ask for assistive devices (wheelchair, cart) if you have to cover long distances between the parking lot and your gate. Use rolling luggage, and take advantage of curbside check-in if it is an option. Make sure you wear appropriate clothing and shoes, keeping in mind you may have to empty pockets and remove shoes to get through security. With Parkinson’s, rushing may actually make you slower, so try to stay calm and focused. Ask if your neurologist would be willing to write you a letter stating your diagnosis to bring with you. That letter may inspire the staff at the airport to be more patient and allow you extra time to complete tasks.
Aisle seats on airplanes are preferable to window or middle seats because they allow more space to stretch your legs and prevent you from having to climb over another passenger to get to the bathroom. Ideally, a person with Parkinson’s should not sit inactive for more than 20-30 minutes at a time, so move your legs and stretch regularly, get up and walk when you can.
It is crucial to make sure you have enough medication with you to last for your entire time away from home, and may be beneficial to bring extra with you. Plan ahead and request refills to be authorized by your physician if you do not have enough medication on hand. Medication is your lifeline when you have Parkinson’s Disease, so do your best to avoid having to stop anything abruptly. Pack your medications in their original bottles with up-to-date directions to avoid any confusion. If you use a pill box, bring it with you and separate medications in to the boxes once you are settled. Don’t forget to pack other accessories as well, such a pill cutter or alarm if these are the things you are used to using at home. Outside of having the pill bottles, keep a current list of medications on your person at all times in case of emergency.
Many Parkinson’s medications are taking multiple times daily and work best when a strict schedule is followed. Discuss with your neurologist how to adjust your timing of doses if you will be traveling across times zones on your vacation. The rule of thumb is this: Maintain the same number of hours between doses throughout the day based on the time zone you are in when you wake up in the morning. For example, if you take your medications every three hours and you wake up in Illinois but travel to California, continue taking your medication every three hours from your first dose in the morning until you fall asleep in California. When you wake up the next morning, you adjust to California time. The time interval between doses is more important than the actual time of day. Keep in mind, this may mean you will need to add a dose at the end of the day of traveling if it is a longer day than usual (make sure your neurologist is aware of additional doses).
Since you want to enjoy your travels to the fullest, don’t overdo it! Give yourself time to acclimate to new surroundings, and schedule time for rest every day. If you know there are times during the day when you function better and have more symptom control, plan activities around your “on” time. Keep hydrated and remember to drink more if you are in the sun or more physically active than usual. Eat frequently. Remember, any stressor like hunger, dehydration or fatigue will make your Parkinson’s symptoms worse.
CONSIDERATIONS FOR THE DBS PATIENT
Always carry your Medtronic card with information about your device(s). Have it accessible when you are at the airport, and provide it to the staff at the security check point. You should be pulled aside and patted down instead of going through the metal detector. Make sure to pack your Access Review (patient remote) so you have the ability to check you stimulators, and turn them on or off. DBS is performed in major cities world-wide, and you can always find the nearest provider by contacting the manufacturer, Medtronic. If you have to be hospitalized while away from home, make sure to communicate to hospital staff that you cannot have an MRI.
WHEN TRAVEL IS NOT A GOOD IDEA
A small percentage of people with Parkinson’s have cognitive deficits, which may include forgetfulness and confusion. Some may also have hallucinations, often as a side effect of their medications. It is important to know that cognition and hallucinations may increase with changes in location and/or routine. Traveling is not contraindicated, but you should have a plan of action in place for mental status changes. Some ideas include bringing familiar items with you, bringing along someone you know well to help reorient you, and asking your physician to prescribe medication that you can take on an as needed basis for disorientation.
There is a class of Parkinson’s medications called Dopamine Agonists that have the potential to cause compulsive side effects. Examples of dopamine agonists are Mirapex, Requip and Neupro. Very few people who take these medications experience compulsive thoughts or behaviors, but if you do you should be sure to discuss with your neurologist. Never plan trips with the intention of satisfying compulsive urges.
So, with the right preparation and planning, you can lead an active healthy life filled with travel and adventure, despite your diagnosis of Parkinson’s Disease. Bon Voyage!!