Category Archives: Politics
Today, of all days is the perfect time to discuss the subject of change. Today, in the United States, millions of voters will have the opportunity to let their voices be heard with a single vote to impact their government. Millions of dollars will have been spent in campaign advertising to insult their opponent, praise or question the current or past administration, or just be terribly annoying, until the next election.
I, for one, cannot wait to see these divisive, bitter, mudslinging, name-calling, unbecoming, childish, messages turn into vapor and return to the barrage of those amusing pharmaceutical ads that we all enjoy at breakfast and dinner time.
If just a small percentage of this political advertising bounty were used to inform the public about the needs of the Parkinson’s world, we could educate the planet on identifying, treating, and caring for patients far earlier in their treatment and improving their care for a disease that has no cure. What could be a more noble use of funds than educating the masses about an illness that is so misunderstood and so poorly explored publicly?
Parkinson’s disease is the second most common neurological disorder in America with an estimated 6 million cases worldwide and approximately 1-1.5 million people in the United States. Even these numbers are suspect for lack of updating and availability to necessary data for making better estimates. For as far as we have come over the 52 years of my life and the 30 years that I have lived with Parkinson’s disease, I see a need for a similar buzz for change, much like the excitement that is in the air on this election day and eve.
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!
It is April and that means it is Parkinson’s Disease Awareness Month!
Everyday ought to be Parkinson’s Awareness Day! For each and everyone of us who lives with this illness, we know that our awareness is real and constant. Now, bring that awareness to those who you encounter or who are less familiar with this illness. Too often, much to my amazement, I meet people completely unaware of what Parkinson’s is and what it can do. We have got to do a better job of telling the world about this illness, and what it is all about.
I refuse to mix politics and ethics. I try to keep my nose out of politics on this site and provide my readers with a perspective that informs and allows you to make your own decision.
I have seen the life-changing impact that Meals On Wheels has made and continues to make on lives. Just the thought of erasing a program as important as this one, is heartless, cruel, and the sign of a system that is out of touch and totally unfamiliar with real human needs.
To reduce funding for the FDA and the NIH reduces our hopes for a speedy breakthrough or drug development. Our health matters and many of the best minds in research and future developments come from these organizations.
The elimination of the EPA could cause numerous devastating changes and have even more repercussions on climate change and various environmental factors that impact genetically sensitive people. The future of the animal kingdom on this planet is in even greater jeopardy, than it is right now.
Speak up! Let your voice be heard!
It is so important to share your story and how governmental decisions impact you and those you love.
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.
In just over a month, the United States of America chooses a new leader. One wants to repeal the Affordable Care Act (ACA) and the other supports providing insurance to those who had none. One said they heard terrible things about the National Institutes of Health (NIH) and the other will support funding research. One denies climate change and the other has concern about the global impact that it does, and will have on our planet.
As someone with Parkinson’s disease, I want a leader who will move science ahead, take a hard look at research for all illnesses, and expedite funding for promising studies. This really hasn’t been a topic that has been thoroughly discussed by either candidate.
Our health is on the line and the decision of our next President will play a huge role in our future health, on so many levels.
Be kind to the Planet and it’s creatures, today and everyday. Here is something that I wrote awhile ago but never shared. Feel free to pass it on to others:
A Prayer for the Planet
May those living in fear, sadness, and pain be relieved of their continuous agony.
May the voiceless children and animals of this planet be heard and helped.
May the environment be aided, cleansed and respected.
May violent abusers, bullies, hate mongers, and racists be enlightened of their wrongful nature.
May we salvage sanity, compassion, and love.
May clean air, water and food be free of pollution.
May mankind invest in cleaner energy solutions.
May government do its duty in serving its people.
May we endeavor to cure the ills.
May kindness be more valuable than money.
May war be stricken from the planet.
May we accept others unlike ourselves.
May we have the strength, determination and character to make just one of these changes.
Writing and Photo by Karl Robb
Copyright 2016 Karl Robb
April has been proclaimed to be Parkinson’s Awareness Month, but just how aware are we really of Parkinson’s disease?
Those of us living with the illness as well as our care partners, caregivers, and close relatives, are all well aware of the physical, the mental, and the spiritual toll that Parkinson’s can take. Unless you live with the disease on a daily basis, it is difficult to comprehend the wide range of symptoms, drug side-effects, and varying degrees of overall health issues that are truly Parkinson’s related—but I ask, how much real awareness is there of this disease?
Just getting a diagnosis with Parkinson’s can be an arduous endeavor. The journey with Parkinson’s is riddled with unknowns that neither scientists nor neurologists can explain, at this time. Dedication to unraveling the mystery of our gray matter is crucial to ending all neurological disorders.
In 2017, the bicentennial of James Parkinson’s observations and discoveries will be recognized. If you look at the landscape of successes in battling this illness, for all the time, money, and attempts at awareness, there is so much need that is left unmet. After all this time, there is still so little known about this elusive condition.
Maybe, spreading awareness and information, when at all possible is a key. Consider sharing your story with the uninitiated and those who are unfamiliar with Parkinson’s, for this offers an opportunity to demystify an illness that is so unique for each individual. Let’s not limit Parkinson’s awareness to just 30 days!
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!
On Wednesday, State Directors and Assistant Directors representing the Parkinson’s Action Network (PAN) stormed Capitol Hill to advocate for issues facing our community. We met with our Senators and many of our state representatives in Congress. Even though I have done this a dozen or so times, the experience is exhilarating and empowering. I don’t deny that walking the miles of marbled corridors left a few souvenir blisters and left me with a good night’s sleep, but it also gave me a sense of accomplishment.
The experience on the Hill was remarkable but even more wonderful is the camaraderie and friendship generated when we all got together. I thank you all for your advocacy work and the difference you make and strive to make. I truly enjoyed seeing all of you and look forward to our next encounter. Until then, I wish you well.
Illness isn’t partisan. Both sides of the aisle are subject to health problems. Both sides are going to need more and better healthcare. Illness doesn’t care about socio-economic status, race, or anything else. It has but one mission , and that is to disrupt and challenge the patient. Life is challenging enough without illness, but when illness combines with everyday existence, life can seem overwhelming.
Lately, there has been talk by politicians and the media about colonizing the moon. Only in a comedy club would this even be funny! I am a huge NASA fan and fully support a space program. Let’s be rational. The technological costs and manpower to perform an operation like this would not only take an astronomical cost but it would require years of preparation, and for what purpose?
For the past 20+ years, I have been told that in 5 years we are going to have a cure for Parkinson’s Disease. I heard it from renowned neurologists and even former leaders in the Parkinson’s community. They assured me that a cure was in the pipeline. I was and remain skeptically hopeful. Until the cure comes, it is up to us, as patients, to do what we can for ourselves.
The United States put a man on the moon, largely to prove our abilities to the Russians during the Cold War, but the USA did it, and in a very short time period. It is this kind of focus and dedication to achievement that is needed to make a breakthrough in Parkinson’s Disease and many other illnesses.
Neurological disorders are usually chronic and degenerative, so time is critical. There ought to be a sense of urgency to uncovering the mysteries of illness on this planet before we go colonize anywhere else.