Today, I have a slight deviation to my usual positive message for an expression of frustration and a plea that I strongly feel needs to be expressed. Consider this my contribution to advocacy:
Congratulations if you are watching and reading the world news and can remain calm. I for one, am unable to digest the vitriolic, bombastic, childish, unproductive, hateful, remarks coming out of our nation’s capital.
When I was a child in the 1970s and 1980s our greatest fear out of Washington was the threat of nuclear war. The fear generated countless classic Hollywood blockbusters and the story slowly faded in the background, until now. The threat was probably there the whole time, but it did not remain on the front page and now, in addition to the chaos of the Trump White House, the threat of climate change, and the shake-up celebrity marriages, it makes one ponder just what to do?
If you are dealing with Parkinson’s or any disease, this is the last thing that you need on your plate. Healthcare, doesn’t mean much, until you need to access it. Our Congress, Senate, and President are entitled to full lifetime health coverage for little or no cost. It is more than a nice perk. They don’t need to vote on a healthcare plan for themselves, they’re just fine, thank you.
As for the rest of us, who actually, could use affordable healthcare, many of us are left dangling in the wind and waiting for a solution. It isn’t pretty, sexy, or exciting, but it sure is needed. I have never seen our government at such a standstill as it is at this time. A stagnant Congress and a President in turmoil leave the millions of people in need of affordable care under undue duress and the inability to move forward.
I know of many friends and fellow people with Parkinson’s who have to make the decision to cut back on their grocery bill to be able to pay for this month’s medication bill. It shouldn’t have to be that way. Sacrificing from your already reduced food budget to eke out enough for some or all of your medications is a sad and scary trade off.
Therapy caps have created a huge problem in limiting coverage for appointments for those of us who benefit from occupational therapy, physical therapy, speech therapy and rehabilitation. These outpatient services keep many of us out of the expensive doctor’s offices, crowding hospitals, and keeping patients active in their community.
I wish I had an answer. I wish I wasn’t so frustrated. I wish someone would hear our voices!
If you follow me and read this blog, you know that I have a passion for the environment and the creatures that inhabit it. Yesterday, on a dreary, dismal, dank, and overall gloomy day, my wife and my father visited the National Geographic Museum in DC to see the amazing work of Joel Sartore. His Photo Ark of extinct or near extinct species on this planet is moving, inspiring, tearful, shameful, eyeopening, jaw-dropping, and purely beautiful. His images capture a one-on-one connection with every being that he encounters. This is a collection and an exhibition that every human on this planet needs to see and inhale. If it doesn’t move you or cause you to question your actions as a human being, then something is terribly wrong.
I have included a few of my wildlife photos–I hope you enjoy!
Just in case you missed it, here is the video link to the Champions of Change for Parkinson’s disease.
The event was held at the White House.
Left to right: Karl Robb, Angela Robb, Greg Wasson, Davis Phinney.
As we near April and Parkinson’s Disease Awareness Month, I would like to publicly thank and recognize the carepartners and caregivers who make our lives better. The carepartner/caregiver can be a tiring and sometimes thankless task.
To my wife, best friend, partner, carepartner, and true love, Angela, I congratulate you on being honored and recognized at the White House as a Champion of Change. I am so proud of you –today and everyday! I am so grateful to be in this life with you by my side! I am so happy that everyone, besides me, sees just how amazing you are!
Next Monday, hundreds of the United States’ most dynamic and involved advocates for the rights and issues affecting people with Parkinson’s Disease will convene in our Nation’s capital. The goal is to be heard and represented but mostly to be understood that we, as a collective force need better funding and services.
Neurological disorders are rising as is the aging population. Even more importantly, younger and younger people are receiving neurological related diagnoses that one might find in an older patient. Whether the cause is our growing toxic world and/or a genetic component that gets triggered or some cocktail of switches, a desperate portion of our population seeks a solution to a real problem that plagues them everyday, all-day.
In less than a century our country replaced vacuum tubes for Silica chips, went from the horse-drawn carriage to the space shuttle, put a man on the moon, and mapped the human genome. Where is the push to eradicate or even slow neurological illnesses? Great strides have been made in other diseases. New therapies and drugs, while slow to come, only slow or mask symptoms. It is time for a push and a unification of voices to be heard in DC and across the nation that more must be done.
The PAN advocates are coming to DC to speak for the countless victims, both directly and indirectly, touched or shaken by Parkinson’s Disease. They are speaking for those who are unable to speak for themselves.
To learn more about PAN and to view an online webcast of our symposium, go to www.parkinsonsaction.org.