I first learned I had Parkinson’s Disease (PD) in 2007. It is a disorder that kills off brain cells that make dopamine — a substance the body needs to control movement, speaking, swallowing and a multitude of other functions. PD afflicts over 1 million people in the U.S. and millions more worldwide. At present, there is no cure and a limited number of therapies to mitigate symptoms.
A positive attitude and exercise are literally the best medicine. I do fitness boxing and belong to a local Parkinson’s chorus.
When I heard that the group was invited to sing at the 4th World Parkinson Congress taking place in September in nearby Portland, Ore., I decided to go in hopes of finding out about the latest treatments and the state of the fight against the disease.
What I found out was both inspiring and disturbing. I was inspired to encounter so many courageous fellow fighters against PD from a range of occupations, backgrounds and countries, and hundreds of dedicated doctors, researchers, healthcare professionals and caregivers. I found a wealth of information and resources, mind boggling at times. They ranged from the mundane (chewing gum to control drooling) to cutting edge technology (future possibilities for stem cell transplants and gene therapy.)
Drug companies were omnipresent as sponsors, donors and exhibitors. What was disturbing was that few people dared to state the obvious: Big Pharma’s focus on profits is a barrier to progress — it only brings to market drugs it can make a lot of money on. There were only a couple of pointed comments about price gouging and the unavailability of therapies that can’t be patented.
My chorus, along with singers from other cities and countries, performed a song of hope written for the congress. It reads in part:
Yes! We can imagine a world without Parkinson’s, A world without tremors and shakes.
We care enough so we will make it happen. Yes, we’ll make the effort it takes.
A pretty audacious statement, given how few advances have been made in the treatment of this disease in the past 50 years since the primary drug, levodopa, was discovered.
I was surprised how choked up I got while practicing the song — it is what we all want to hear. But, I was troubled about raising all of our expectations under the existing pharmaceutical monopolies and healthcare system.
The clock is ticking. We were told by one speaker after another that concrete advances are five or 10 years down the road. But as a man with young-onset Parkinson’s said, he’s been hearing this same estimate for over 20 years! Without a timely cure, PD will continue to severely impact the lives of millions.
What is the way to turn hope into reality? It is to dedicate many more resources to medical research and a full range of human services.
The National Institutes of Health reports that only 20 percent of research applications for all neurological disorders and stroke were funded in 2015. More resources are not going to be forthcoming under our privatized medical system, which rations both research and treatment, and forces people to pay a high cost for their care or go without.
As a lifelong social activist and radical, I put my faith in the larger struggle for social and political change.
The money is there. The National Institutes of Health spends $146 million a year on Parkinson’s research. This is a pittance compared to the $598.6 billion in military spending in 2015. And most tax dollars come from working people, not corporations or tax-dodging billionaires like Donald Trump.
We should join with health activists and other movements to demand taxing the rich and redirecting billions from the military to medical research, socialized health care, education, housing, public employment, social services, environmental clean-up and other pressing priorities.
Our best hope for curing Parkinson’s is to work together to reorder society for human needs, not profit. Since the election of Trump, this fight is more needed than ever.
Fred Hyde is a retired state employee and civil rights lawyer. He grew up on a cattle ranch where he was exposed to toxic chemicals linked to Parkinson’s Disease. Contact him at firstname.lastname@example.org.
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