For those who care for someone with Parkinson's disease

Parkinson's disease Caregiver Commentary

Traveling with a Parkinsonian
By Susan Hamburger

Editors Note: Susan was caregiver to her husband Stan, diagnosed with Parkinson's disease in 1980. He passed away on August 12, 2008 at the age of 73.

Traveling with a Parkinsonian can be an undertaking of mammoth proportions or not a big deal, depending on many factors. If the caregiver is a person who has traveled quite a bit and the Parkinsonian is not greatly impaired, one might find it quite simple to take a short trip, or even a long one for that matter.

When the caregiver is an inexperienced traveler and/or the Parkinsonian is quite advanced, the logistics of traveling can be a little overwhelming. BUT it is still doable. Lets take it one step at a time so it does not become overwhelming. Traveling can be a WONDERFUL experience if you are able to plan ahead for the problems that might potentially arise. That's the secret – PLAN AHEAD. Planning ahead means not just deciding where or when you want to go someplace, but also actually getting every duck you can think of in a row. If you can do that, you most likely will be greatly rewarded with a pleasant experience. I wish I could guarantee that this would happen all the time, but you know that sometimes, things just go wrong!!! What you want to try to do is make sure that the things you have control over always go smoothly.

What are some of the things that one can do to plan ahead?

  1. Arrange for your transportation (cab, relative, or friend) to the airport or train station to arrive early so you can get there early. It is stress reducing to be there early or at a minimum, on time.
  2. If you use a travel agent or do the trip planning yourself, make sure that the train or airline personnel know that you might need help. ALWAYS ask for a wheelchair to be available at the airline gate or train station. Even if you don't know if you will need it, have it available and make things easier for yourself. We travel with our own collapsible wheelchair and sometimes I use it for carrying extra luggage if Stan does not need it at that moment. It is really nice to have it there. Skycaps can be an enormous help when you are juggling lots of things - purse, luggage, Parkinsonian, tickets, etc.
  3. Ask ahead of time for handicapped accessible hotel rooms – access to the rooms and bathrooms is much easier.
  4. Pack extra pill containers and put them in several places. One never knows what might get lost, stolen, or misplaced and we don't want the medication to be vulnerable to loss. I carry one bottle in my purse, one in Stan's pocket, one in our carry-on luggage and also in the bigger suitcase. I'm ready for anything.
  5. Ask for front aisle or bulkhead seats on an airplane. You can ask the agents at the gate to arrange this for you if you get there early enough. It's much easier to get on and off the plane if there is not too much maneuvering down the aisles. Also, take advantage of the opportunity to get on the plane ahead of time to avoid being rushed and trampled on.
  6. Pack and check as much luggage as you can. Just in case you need to help the Parkinsonian, it's much easier to do if you don't have a lot of luggage to deal with.
  7. Stan and I used to love to travel on our own in Europe. When that became too difficult for me to manage everything, I found that a guided tour works very well – especially with a good company like Tauck Tours. The tour guides and other travelers are usually very helpful, we were given accessible rooms and we encountered very few problems. I really recommend it.
  8. If you are traveling to a different time zone, within the USA or other parts of the world, maintain the medication schedule according to the clock where you are – NOT the time it was at home or on the plane. As soon as you arrive at your destination check the time there and give the medication accordingly. It may mean giving the meds early, but that is far less confusing for you and the Parkinsonian and maintains the usual regimen.
  9. The one thing that I have had the most trouble with is allowing other people to help. I always think I can do everything myself and don't want to bother others but the smartest thing to do is to allow them to feel good about themselves by letting them help you – whether it is opening a door, pushing a wheelchair up the ramp from the plane, or letting you get in the front of the line - do it and smile gratefully. You deserve whatever perks life offers!

About the Author
Susan Hamburger earned a Bachelors Degree from the University of Wisconsin in Elementary Education, and two Master's Degrees, in Educational Psychology and Biostatistics/ Epidemiology. She has been a kindergarten teacher, a school psychologist, and retired as Biostatistician at the National Institute of Mental Health.

Susan has served on the Board of local Parkinson's disease support group organizations since the early 1990's. She has served Chair of the Patient Services Committee, Vice-President and President of the Washington DC area chapters of the Amercican Parkinson's Disease Association and the National Parkinson's Disease Foundation. Susan has also spent many hours on Capitol Hill, lobbying our Senators and Representatives to increase the funding for Parkinson's disease research.

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