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.
Bring a bit of peace and beauty into your home! If you are a nature lover and need a calming force that mesmerizes, might I suggest you turn on the captivating vistas of NatureVision TV now on Netflix. Season 3 unveils about 10 hours and 10 episodes of natural world diversity from ocean to jungle.
Whether you meditate with the video and soothing music softly playing in the background or choose to mute the sound just to appreciate the awe of the bounty of creatures and places, this video collection would be great for parties and get togethers. Try using this marvelous collection just as TV art, instead of your TV just being a blank canvas.
If you are a Netflix subscriber and want something unique and attractive to play throughout the day, like moving art, or just want peaceful television to wake and go to bed to, consider this wonderful collection of our planet’s gifts.
I will report more, soon, on other Netflix finds, both nature-related, and not, very soon.
Tomorrow, James Parkinson‘s essay will be 200 years old. Since his discovery, modern medicine has made strides with L-Dopa and Carbi-dopa breakthroughs that have become the long-standing gold standard of regimens. Not to diminish the importance of the Levadopa breakthrough, but that was over a half a century ago.
New drugs and procedures are slowly trickling out, but no one drug that I know of has impacted Parkinson’s disease as that of L-Dopa. To this very day, since my 1991 diagnosis, I have found benefit from this most amazing life-changing drug. I am very lucky to report that my dosage, even after all this time, is a lowly 3 pills (25/100) a day. I aim to keep my pill consumption to the utmost minimum, but only time will tell.
I am hopeful but impatient as I plead with any pharmaceutical company, researcher, doctor, or anyone connected with creating new innovations to the neurological world that a huge need is there, right now, and an escalating problem that will impact so many. I would offer detailed numbers, but at this time, as we have no hard numbers, for lack of a registry devoted to Parkinson’s patients, the numbers just aren’t gathered, yet.
On World Parkinson’s Day (4/11/17), like millions around the world, I will be participating in #UniteForParkinsons. Please join us to spread awareness via social media to the world about Parkinson’s disease. Visit https://www.worldparkinsonsday.com/#world-parkinsons-day for more information!
Parkinson’s Disease agonist medications (Requip and Mirapex) have been shown to cause compulsive behavior for some users. Some users have been shown to be prone to gambling addiction, sex addiction, shopping addiction, food addiction, and gaming addiction may occur. Compulsion may even entice users to go beyond legal limits to feed their desire or lose sense of time.
If you find yourself facing any kind of compulsive behavior that may be taking you away from friends and family, or is disrupting your life, tell your neurologist and someone close to you about breaking the cycle. Communication is so vital to your well-being. Carrying secrets only fuels the tension and stress on the mind and body. Letting go and making a change (with your neurologist’s help) might just be the right move forward.
As a child, I used to love winter. I would sled and ski and didn’t give the bitter cold a second thought. Now, I am less oblivious and less tolerant of the cold. My body functions and just moves more freely in warmer climates. Cold seems to cause greater constriction of the joints and even the muscles.
Winter doesn’t just bring on change of the physical body but with light changes and shorter days, the changes may impact your mood. Keep a close eye on your daily attitude and if you experience thoughts or feelings that you need to express (sadness, possible depression, or anger) consider getting help and stay on top of it, before it manifests into something you can’t control.
I am so pleased to have Robin Elliott, the Executive Director and CEO of the Parkinson’s Disease Foundation answering my questions on my blog today. This is right before the World Parkinson Congress in Portland, Oregon, where thousands will congregate to discuss, share, convene, and educate one another on the latest research in this illness.
Here are eight questions. Five of them are strongly encouraged that you answer them. The remaining three questions are your choice whether you want to provide an answer or not. Thank you for participating.
Chinese, Thai, Italian, Mexican, or Ethiopian—what is your favorite cuisine?
What do you like on your pizza?
Of the four seasons, which is your favorite time of the year?
How many World Parkinson Congress events have you attended?
Four (including this one in 2016)
What are you looking forward to most in Portland, site of the WPC 2016?
Riding a bus tour (if time allows) of the one major city in America that I have never visited
Tell us something about yourself that we might not know about you that you would like to share.
I love to play the piano — preferably in private — and the church organ
Where would you like to go, that you have never been before?
Australia and New Zealand
What is the Parkinson’s Disease Foundation (PDF) working on that you would like to tell us?
PDF ‘s new program of research and education on the special problems that are confronted by women who have Parkinson’s Disease
When you live in or very near our nation’s Capital, Washington, DC, American national news becomes your local news. The constant bombardment of fighting and badmouthing gets overwhelming. How do two parties, both made up of flesh and blood, elected to oversee, govern, and protect millions of fellow humans also made up of flesh and blood who are in a position to help so many and capable of making life better for others, so dormant and implacable? Time is of the essence.
Since 1995, almost every year since, I have consistently pleaded with my representatives about increasing the funding for more Parkinson’s disease research for the National Institutes for Health (NIH), implementing telemedicine, expanding better and faster drugs and devices, and made a loud cry for the importance of creating a national data collection system for neurological diseases. There were moments of fleeting successes, scattered over the years, but our current Congress shows little signs of budging, even on issues that could save immediate lives. This is about real people in need.
If the current estimate of 60,000 people are diagnosed with PD every year is nearly accurate, it is probable that many patients are either misdiagnosed or not at all. It took me 6 years and 9 doctors to get my diagnosis. I know many others who faced the same journey to a diagnosis.
No one should be forced to be faced with the decision to either afford groceries or their medications. No one should be homeless with Parkinson’s disease. Something is terribly wrong when it has come to this.
Whether one has an illness or not, for the betterment of the country as a whole and all those seeking progress, compromise must be acted, immediately.
Checkout the artistic innovators at http://www.forgingresilience.org and assist them in creating art for the 4th World Parkinson Congress in Portland, Oregon this September 20-23, 2016.
Provide them with a photo and/or a quote for their art installation. A tree of resilience with thousands of leaves with each leaf representing a quote or photo. It will be on view. Share your story and be represented on the tree (see photo on their site) by providing your information by Friday, April 22. If you or someone you know is touched by Parkinson’s disease, please let them know about this project.
Visit their website for details about how you can be part of this event – http://www.forgingresilience.org
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!