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Making a Move with Parkinson's
By Bruce Talbot
Originally published in the Spring 2007 issue of PDF News & Review.
This column literally is from the mailbag. It was sent from Chiapas, the southernmost state of Mexico. In late December, my wife, Judith, our two children and I packed up our things and moved from our home in Vermont to the city of Comitan.
We chose to live for six months in Comitan because we knew that there would be few, if any, people there who spoke English. We wanted to maximize the opportunity for our son, Alex, 14, and our daughter, Sofia, 11, to learn Spanish. They readily agreed to our plan because we would be crossing the nearby border into Guatemala, their country of birth, several times during our stay. Alex will meet his birth mother and sisters and wants to be able to talk with them. Sofia will meet her foster parents, who loved her and cared for her in the first months of her life. We also chose Comitan because of its proximity to fabulous Mayan ruins and an enduring Mayan culture.
As Judith and I began brainstorming about our move to Mexico, we agreed that we would plan it not around my Parkinson’s disease but, rather, around the kids. We decided to go for it and, one way or another, make it work!
Prepping with Parkinson’s
Before committing to Comitan, Judith went on a late-fall reconnaissance mission to find a place for us to live and schools for the kids. She made sure the house was easy for me to navigate (not too many steps) and convenient to public transportation. It was a load off our minds to know that such a home awaited us.
Another thing I did before the trip was to get a thorough going-over by my neurologist (and my primary care physician, my urologist, my gastrointestinal specialist and my dermatologist) in the weeks leading up to our excursion.
About two months before our departure, I began addressing the task of making sure I could get a big enough supply of medications to cover my long absence. I was able to obtain from my Medicare Part D pharmaceuticals insurer a six-month “vacation override” which I was told was the maximum supply allowable. My carry-on baggage full of meds ended up weighing 13 pounds! Needless to say, that raised an eyebrow or two en route.
A fellow Parkinson’s traveler gave me excellent advice: Have each of my physicians write a “To Whom It May Concern” letter explaining that I had PD and listing all of the meds they had prescribed, including dosages and schedules. The letters were invaluable at the Mexico City airport when checking in with a skeptical customs agent. I had all of my meds in one piece of carry-on luggage, all in original labeled containers, all in clear plastic bags. The one thing I did not do that would have been helpful was to have my doctors’ letters written in both English and Spanish. Nonetheless, the letters got me onto the plane. I also typed out — and reduced to miniscule wallet size — my entire medication regimen.
Once We Arrived
Have we found Comitan to be a PD friendly city? Yes and no. You pretty much walk everywhere, which makes for great PD exercise. The problem is that the sidewalks of this old city are uneven, cracked, frequently narrow and sometimes a good 18 or more inches above the street, making for quite a step up or down. I have come close to taking some pretty dramatic spills. This is a good reminder to me to keep a sharp eye out for possible problem areas.
Since we have been here, several things have occurred to me that may have been smart to have done before we made the move, such as finding out if there was a movement disorder specialist in town. National Parkinson’s organizations, including PDF, can be very helpful in locating care providers, senior centers, pharmacies and other services. People who are really on top of things should arrange to have copies of their medical records forwarded before their move.
Another thing that can be helpful is to investigate patient and caregiver support groups. In our efforts to center the trip on the kids and not my PD, I did not go this route. Maybe I will try to start one! Another thing that we did not do ahead of time, but is probably a good idea, is to get travel insurance, including medical evacuation coverage.
I am slightly embarrassed to admit that we did not do a lot of things “by the book.” That has been pretty much my modus operandi ever since I was diagnosed with PD about a dozen years ago: Do what you want to do and, as much as possible, do not mold your life around your disease. Weigh your options carefully and decide what steps are going to make your move more comfortable without overburdening yourself.
I have seen time and again that if we follow our dreams (and take advantage of some of the good advice that comes our way), our PD-affected bodies will usually somehow follow along. And that, I guess, may be the most important message of this column.
Bruce Talbot is a member of PDF’s People with Parkinson’s Advisory Council. His permanent home is Moretown, VT.