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.
It isn’t often that I write a movie review.
Okay! In fact, I NEVER write movie reviews. I’m feeling nostalgic and re-connected with the past from a long-awaited 14 years. After 14 years, the sequel to The Incredibles is here! I saw it on Thursday, and it did not disappoint! I wish it hadn’t been over a decade and a half, but it was a blast!
If you loved the original, The Incredibles2 picks up right where the first left us—and that’s all you need to know about the sequel. Just know that the movie is full of action and humor. Enough said!
The geniuses at Pixar did not skimp on detail, sound, or music. This sequel is a fun house, chock full of gems including mid-century motifs of Knoll, Noguchi, Saarinen, Herman Miller furniture, clothing, cars, and architecture.
We had played hooky to go make time to see this movie, something we don’t do very often. The message here, as hidden as it may seem, you might want to:
1. Plan future events to look forward to
2. Treat yourself
3. Savor the little things
4. Avoid always being so serious
5. Laugh as much as you can
6. Work hard and play hard
7. Remember, it’s fun to act like a kid—when the time is right
Let your inner kid out, every so often and take it all in!
It is far easier to succumb to the will of gravity and fall than it is to fly. Flight takes practice, focus, precision, concentration, and fearlessness. There is only one way up and one way down, but getting up rarely is as fast as the way down. We all fall down, it is the determination in getting back up that matters.
Today, the clouds and winds may not be accommodating for flight, but the winds may shift and the clouds will part for you to try again to take your place among
Join me and my wife and carepartner, Angela, for a Q & A as we talk about our views on Parkinson’s disease. We are excited about this opportunity and encourage you to join us at 11 AM EDT on April 19th. Just click the link below to see how to enter our talk. We hope that you can join us!
If you didn’t know, April is Parkinson’s Disease Awareness Month!
Also, if you didn’t know, in September, the World Parkinson Congress 2016 (WPC) meets in Portland, Oregon where thousands of people with the illness, doctors, researchers, authors, and other experts in their fields will convene to meet and discuss what is new in the fight against Parkinson’s disease. If you haven’t looked into going, I would highly recommend that you do. This will be my third WPC event. For more information on the event, visit WPC2016.org
I was going through my files of paperwork and came across years of documents that I considered to be motivational, inspirational, and truly worth being read and reread. You might even remember it.
Although this following post is not specifically Parkinson’s disease related, I find it to be sound and practical advice for everyone. I hope that you enjoy it, find at least 1 of the 10 pieces of advice to be a morsel to take away, and may even share once again with others:
Palo Alto High School Speech by Guy Kawasaki 6/11/95
10. Live off of your parents as long as possible.
9. Pursue joy—not happiness.
8. Challenge the known and embrace the unknown.
7. Learn to speak a foreign language, play a musical instrument, and play no contact sports.
6. Continue to learn.
5. Learn to like yourself or change yourself until you can like yourself.
4. Don’t get married too young.
3. Play to win and win to play.
2. Obey the absolutes.
1. Enjoy your family and friends before they are gone.
If I were to add to this thoughtful list, I might add – Tell the people in your life and those you care about, just how much they mean to you, while you still can!
Yesterday, I had the honor and privilege of testifying in front of the United States Food and Drug Administration (FDA), about symptoms of Parkinson’s and how they impact daily living. The event brought out at least 20 or more of the FDA’s neurological specialists and decision makers. I watched as they listened to my fellow panelists testify about their struggles with Parkinson’s disease and many took copious notes about what was said.
I am confident that they were listening to the plights of those of us facing a variety of issues related to our illness. It is my sincere hope and plea that something positive, like an ongoing dialogue between FDA and patient, or even a rapid push for speedier development of therapies is implemented. It is encouraging and wonderful to see interest from the FDA and the Parkinson’s community. This can be nothing but positive and hopeful!
No matter what you want to call it, patterns, cycles, or habits, I believe that we are capable of achieving the change that we are seeking. When we are too inflexible for change or correction we begin to lose that part of ourselves that brings us to our higher self.
Focus can be good but when we tunnel-vision too much in our mind, we lose perspective and the importance of what is going on all around us. There is too much to miss if you focus solely on yourself. We must know our place and not be so focused on ourselves or others but to maintain a healthy balance of our connection with the world around us.