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What Every Person with Parkinson’s Needs to Know About Air Travel

Plane Travel!

Don’t be alarmed– but be aware, my fellow Parkinson’s disease travelers!

As if we didn’t have enough to worry about along our journey, it was released recently, that the Transportation & Security Administration (TSA) has a program called “Quiet Skies” that is noting behavior, looking for excessive fidgeting, perspiration, and cold stares by passengers. Supposedly, fifty passengers a day are identified.

We are being tracked and monitored both on the ground and in the air. Our habits, reading material, and reactions are noted and logged, if we bring any kind of attention to ourselves. The knowledge that anything out of the ordinary needs investigation is understandable, but when you are faced with a neurological disorder that can alter your walking, uncontrollable movement and body temperature regulation (both hot and cold), tremor, or balance issues- these physiological reactions are possibly red flags that could bring focus on those of us living with an illness.

Maybe, just maybe, through education and identifying ourselves as people with Parkinson’s and educating TSA agents about facial masking, dyskinesia, bradykinesia, as well as the numerous subtleties that can come with Parkinson’s, might be just what the doctor ordered. Instead of making the TSA wonder what we are going through, we need to create a teachable moment that might just lead to real changes.

People suspect and often fear what they don’t know about. Unless you live with Parkinson’s disease daily and are aware of the wide variety of symptoms and unpredictability of this illness, only through education and extra training will those unfamiliar with neurological disorders come to be educated.

A Danger In Profiling

Is Profiling Really Right?

I am worried! I’ll tell you why. The Transportation Security Agency (TSA), the people looking out for us at the airports and train stations are going to be profiling passengers. They are on the lookout for people that stand out in the crowd—people that move differently and may appear to be nervous, stutter, or seem to have something to hide.

Parkinson’s patients may fidget, tremor, or shake to and fro, at any time for any unknown reason. Stuttering, stammering, or broken speech can be part of the illness—does TSA know this? Who is training TSA about the thousands if not millions of people who travel with neurological disorders? If isn’t Parkinson’s, it could be one of the many other illnesses that calls attention to the patient. Stress and anxiety strike even the healthiest of the population at certain times of his or her lives—how does a TSA agent, someone unfamiliar and void of neurological conditions make the judgment to dismiss one person acting strangely over another to a traveler acting strangely due to a medical condition?

About 4 years ago, my wife and I were traveling to go to Florida. On this one occasion, I would take a walking stick that hikers use and can be adjusted to work as a monopod for stabilizing a camera. I decided it wouldn’t be a problem since the stick was retractable and very portable.

Security went smoothly, until I passed through the metal detector. I was fine, but the young woman scanning my carry-on and now, the stick, eyed it like she had never seen a walking stick before. Her perplexed expression confused my wife and me but we hoped that wasn’t going to last—it did. She called over a tall, pushy, young, man in his late 20’s to ask me what this was and to tell me how he was going to proceed to dismantle it in front of me. I immediately snapped back,

“If you break it, you buy it! It’s a simple spring-loaded walking stick! I have Parkinson’s disease and on occasion I find it helpful! Last week, the tension spring on the stick got stuck and it took me an hour to get it right and if you disassemble it, this thing will never work right!”

 To my amazement, the kid eyed me, eyed the stick, and handed it back to me. My outburst had paid off and we were free to be on our way.

Here is an example of our culture making life more difficult rather than easier. I understand the need for security on our planes, trains, ships, and highways, but I also think that those inspecting the cargo and passengers should have knowledge about what and who they are inspecting—don’t you?

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