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.
AsoftVoice.com Recognized as one of the Best Blogs on Parkinson’s Disease for the 4th Year in a Row!
I am so grateful and honored to announce that for the fourth year in a row Asoftvoice.com has been chosen by Healthline.com as one of the best blogs on Parkinson’s! I am elated to be picked with so many outstanding bloggers and such exceptional websites that I respect so highly! I congratulate all of my friends and fellow bloggers who also received this award!
Thanks to Healthline.com for including AsoftVoice.com as one of their 2018 Best Blogs Parkinson’s Disease and everyone who reads this blog! I hope that I can provide content that you will find to be interesting, educational, and helpful! Thank You!
I recently joined a Rock Steady Boxing class! The class and the instructor are wonderful! If you have Parkinson’s disease and haven’t tried the Rock Steady Boxing program, I encourage you to find the nearest program in your area. The camaraderie and encouragement amongst the participants is uplifting and inspiring.
The workout is tough, lively, active, loud, motivating, and rewarding. I hate to admit it, but I am getting older. I’m rediscovering muscles that I have not used for a good while. For an hour and a half, the boxers either move through a series of exercise stations made up of quick thinking and moving games, flexibility or core exercises, many of them borrowed from yoga focusing on balance, strength, posture, and mobility. The program is flourishing, as it should. It’s novel, fresh, and effective! This program does something amazing—it makes working out fun again, for me.
Rock Steady Boxing NOVA has been an experience that I did not expect! The whole class has bonded and become a unified group. Everyone supports the other and encourages their fellow boxers. Our coach and leader, Alec, is a charismatic and inspired young man who really strives to make improvements in our class’s lives.
My first two classes, the workouts kicked my butt! I am happy to say that I can see an improvement in my strength, balance, and overall fitness. Rock Steady Boxing is a welcomed break in my day and week. I see the boxing as a moving meditation. It is a break that I look forward to, as well as seeing my boxing friends and putting on the gloves. I think this program builds your confidence as much as your body. Rock Steady Boxing is like a fast-paced support group that makes you sweat.
If you are looking for an opportunity to get a great workout, build some muscle, make some new friends, and pound some punching-bags, then I encourage you to try Rock Steady Boxing in your area to see if it’s right for you!
Parkinson’s Disease (PD) knows no boundaries, when it comes to age. Young, middle aged, or older, we are all susceptible to the throws of this illness. Parkinson’s is a complex illness that is still not fully understood as to why one person may get the disease but others do not. It may be that PD is actually more than one disease, under a dome of many.
I don’t know that there is making any sense of this illness. The diversity of symptoms and effective medicines vary so much that it is rare, if ever that two patients share the same symptoms or find the same benefit from a similar regimen.
Unraveling the complexities of this mysterious illness or illnesses continues to be a challenge for medical science. New discoveries may require a new and less conventional methodology for explaining this most elusive and cunning illness.
Today, the newest James Bond blockbuster, SPECTRE, is released in the United States! The Bond films are now over 50 years old, just like the gold standard Parkinson’s drug, L-Dopa. The movie cost over $300 million and made $80 million in a record breaking weekend in the United Kingdom.
I am and have always been a huge Bond fan so don’t get me wrong. I am wondering why and how we can devote so much capital, time, and labor into the entertainment and sports industries and see so much innovation within those industries but see such little innovation within medical breakthroughs?
If your first experience with Parkinson’s disease (PD) was anything like mine, I went into a state of shock, disbelief, and a spiral of “what do I do now” syndrome. That was a long, long time ago, here in this galaxy, not so far away.
Since then, I have had almost 28 years to digest and understand (or at least try to) what it means to face the diagnosis of Parkinson’s disease. While in my very first neurological waiting room I found myself, a 23 year old, surrounded by much older patients in wheelchairs with various conditions. At the time, I, like most of the public was positive from all that I knew that only the elderly get Parkinson’s disease. A few years after my diagnosis, it was bittersweet reinforcement from Michael J. Fox’s release of diagnosis that Parkinson’s was not exclusive to those over the age of 60. I would like to think the world outside of the Parkinson’s community has a grasp on the nuances of our Illness, but I think I would be wrong.
Many are surprised that I was diagnosed so young despite that the face of Fox has largely become synonymous with this Illness. Both,
he and I and many others that I know are not anomalies. We are young and we are a growing segment of the population with Young Onset Parkinson’s disease.
At the time of my diagnosis, I was said to be in the rare two percentile of patients. Now, according to the Parkinson’s Disease Foundation (PDF) it is estimated four percent of people with PD are diagnosed before the age of 50. It is estimated that 60,000 new cases are diagnosed a year and somewhere between 1 million to 1.5 million people in the United States are living with it. The truth is, until data collection is put in place, all these numbers are sheer speculation. To learn more about data collection for Parkinson’s disease and what you can do go to http://parkinsonsaction.org/our-work/data-collection/.
Neurological disorders largely remain a mystery mainly due to the sheer complexities of the human brain. Better government funding, a drive for expediency, better institutional sharing and cooperation about data, and a public outcry that urgency is required right now must be reiterated over and over.
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!